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Saturday, December 29, 2007 9:00 AM CST
www.cotaforsavannaha.com
savannah got the call.. she is getting her liver transplant as I type this. Please pray for her, and her donor family.
Savvy, we love you, and can't wait to hear about how amazing you will do post transplant.
No more Biliary Atresia Baby. No more.
Love, Lisa
Wednesday, December 26, 2007 3:46 PM CST
Is there anything better (besides being a kid yourself) than being woke up to your children on Christmas day? I could barely sleep on Christmas eve thinking about what the kids would be feeling in the morning.
Joey and I woke before the boys. Joey made me coffee (as he does every morning! how sweet is he?!) and we sat and waited for the boys to come out. It didn't take long before Aiden was rubbing his eyes, and coming around the corner.
He ran to the window to see if the reindeers had eaten the reindeer food we left them. I had the video camera going. I asked Aiden what on Earth was in the BIG box next to the tree. Mason was already there.. did a B line. (thats MY boy!) Aiden was still foggy from being sleepy, and didn't notice the enormous box next to the tree. Again I pointed him toward it. And in Aiden fashion, he pretended to faint.
Aiden recieved his first "real" train. Lionel train. And it has not stopped moving since yesterday morning. Seriously, who knew those train going in a large cricle could be SO much fun?
Aiden was drinking his rice drink last night, and all I could hear him say was, "rice drink, meet choo choo.. choo choo, meet rice drink. Ahhh life is good".. seriously this kid is happy.
mason on the other hand was more like a typical 2 year old.. thrilled with the paper and the bubbles in his stocking. Not interesting in openeing the rest of the gifts. So Since Aiden didn't get much under the tree he opened Mason's other gifts. Mason would say, "WOW.. OHHHH " but back to the bubbles from his stockings.
My best friend/husband was so sweet and got me my favorite gift. A coffe mug that says, "worlds best teacher"... I cried. Sometimes we forget that homeschooling mommies aren't JUST mom's with books.. we are teachers too.
Christmas was great. Now I sit here procrastinating packing and cleaning. My house has been hit by hurricane BOY and I am totally unmotivated to clean. I did the kitchen, but the rest of the house remains in shambles. We leave in the morning to head to Joey's families house. Again another Christmas, more gifts for my boys. Sigh... I need another room!
I wanted to send out an update on one of the babies I had recently asked prayers for. Little Sofia recieved her call for her liver transplant... ON CHRISTMAS DAY. She was transplanted and is currently in the PICU recovering. Please keep them covered in prayers. And do not forget to keep praying and praying for our little princess Savannah to get her CALL. She has been waiting for 7 months. And her momma and her are living in the ronald Mcdonald House for over a month.
Needless to say it has been an emotional Christmas learning of little children who are exactly in the shoes we were 5 years ago. But like my friend Barbara said in the guestbook... if I knew then what I know now.. I would have slept a lot better.
God Bless you all! And even though not many can top the Christmas Gift baby Sofia got, I pray that you all had wonderful days like we did.
Assignment America: (fun project for the guestbook) feel free to share your favorite gifts or memories in the guestbook!
God bless and photos coming soon!
Joey, Lisa, Aiden, & Mason
Monday, December 24, 2007 10:05 AM CST
We had a wonderful day celebrating Aiden's 5 year transplant anniversary. Joey came home a tad early and we went to play mini golf. It was so much fun. Mason has been doing the silliest thing ever, he has been a puppy. I mean non stop. for about 2 weeks he has been crawling on his hands and knees and acting like a puppy. Ruff Ruff. No words. Just ruff. When I lay him in his crib and say "night night" and he responds.. "RUFF"... wakes up.. "RUFF!! RUFF!!!" I go and get him. On the phone he even says, "Ruff.." instead of good bye.. but say's it with the perfect inflection in his voice. "Ru-uff"..
So back to mini golfing. We had a blast, and the puppy, carried the the score card in his mouth the entire time. here are some cute shots of the family on Aiden's transplant anniversary:
Aiden LOVES mini golf!
I love Joey!!
ruff ruff
hole in one! (or 21)
so after mini golfing we went to dinner at Chick fil A. The boys played in the play area, and Joey and I watched them and ate. 
aiden thought this was "hilarious"
Saturday Joey had to work to make up for days he lost while saving the grapefruit. So Saturday night we made some hot chocolate, and went to this awesome neighborhood in Seminole that was all decorated to help raise money for Hospice.. It was so great.
here is a house all lit up with Gator colors.. orange and blue.
thought this was a neat photo.. 
Uhh can you tell joey was driving? Slow down!
We all sang Christmas carols and had a great time Saturday night.
Yesterday Joey worked most of the day but we had some friends visit for a bonfire and burgers. The kids had a blast! They roasted hot dogs in the fire.. and the boys had fun throwing acorns and twigs in the fire. 
the kids also made gingerbread cookies
Mason loved this project
Aiden loved to lick the icing!
All in all it was a wonderful night. So nice to share this time with loved ones.
I can't believe today is Christmas eve! Joey is working for most of the day, and I am getting ready to bake my famous apple pie and sugar cookies. (ok only famous by family's standards).
We will be going to Christmas eve service tonight, then coming home to watch our annual tradition.. the Polar express. We will leave the cookies out for Santa, and then the kids will be nestled in their beds.
I hope everyone has a Christ filled Christmas. I pray you have your family close, and are surrounded with love and joy.
Merry Christmas everyone...
The Hawk Family
Thursday, December 20, 2007 10:07 AM CST
Please hit play to the above montage. If nothing else I worked hard on it, and I hope you enjoy it. Happy liver day my wonderful boy.
I know this is a VERY long update that is about to follow, but it is why I have a website. It is the reason why I write, and I share. It is the story of Aiden's Gift. Two years ago I shared this exact story. But I felt like sharing it again this year. It is simply copied and pasted from an online website, it is the story of Aiden's transplant. His gift of life. Of course there is many missing peices, but this is the guts and soul of the story. So get a cup of hot chocolate, burn your fav yankee candle, get a box of tissues... and read Aiden's story.
The updates below were written by three people at the time of transplant 5 years ago. Myself, Sara (aiden's almost donor) and Kitt, Aiden's God mother. If you have read this once before, read it again. For me I have read it several times this year to remind me what this fight is all about. How we were given a miracle.
Tomorrow Aiden will be celebrating his 5 year transplant anniversary. But that also means 5 years ago a baby passed away and donated to Aiden. Always remember them in your prayers. THANK YOU
Just for back up information: Aiden had just been through a procedure (sclerotherapy) a few days before to help treat the veins in his esophogus that were bursting and bleeding. They found bad news, they were all huge and “ready to pop”. His esophogus was so constricted he couldn’t eat solid food, from the swelling of the veins. He was developing fevers everyday. He was sick. He was a 40 peld, (very high score on the National waiting list). We were just waiting. Waiting. Waiting…… I prayed and prayed for that call... and then this day happened:
~~~~~
posted Dec. 21, 2002 05:42
WE GOT THE CALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
at 5:10 this morning our transplant coordinator called me and said, " Lisa, we got the PERFECT liver." sara was laying in the next bed over and I turned around and she had her hand clasped over her mouth and was crying with me.
Joey is all the way down in Florida getting the baby ready to come for his new liver. They should be here by 9:00am. God placed me all the way up here because He knew that I needed to be "here" and let Joey take care of the "getting here".
I will post as soon as I know something. Please remember the family that lost their baby right before Christmas, that is making this possible. There are angels watching over us this morning. God bless that family.
OKay I am spinning and need to go and get ME ready for this surgery. Thanks you please pray harder than ever. Love you XOXO
~~~~~~~
11:55 AM
Aiden is in surgery now...
Sara here--signed in as Lisa so I could change the thread title
They took him in at 11--all of Joey's and Lisa's family are either here or on their way--it was no false alarm--the liver was PERFECT!!!!!!!!
I ran back here to the guest house to post and will do the same when we get a real update--especially when there is an end in sight--I can't possibly explain the roller coaster we have been on--ESPECIALLY Joey and Lisa!!!!
~~~~~~~~
Update 12-22 - Aiden in PICU and doing okay...
Hello, all – Problems with breathing and clotting. He is very swollen, and is hooked up to any machine imaginable. there is a virtual column of machines next to his crib - on both sides. He will gradually be taken off machines one at a time, as he becomes more stable. Issues like his breathing will delay removal of some machines as the medical team is watching Aiden VERY closely. This is definitely the most risky time for Aiden, and possibly when the prayers are most important. Please keep him in your thoughts and prayers for the next 72 hours.
~~~~~~~
update 9:44
PRAYERS NEEDED
Just talked ith Lisa--there MAY be some complications with this liver--the next few hours are CRITICAL. Amidst the joy and relief please keep those prayers coming--we aren't out of the woods yet--Aiden is awake enough to recognize Lisa's voice so we know he is fighting--pray for God to lend him the strength and the will. I will post more as soon as we know something.
~~~~~~~~~~
2:37
Aiden is in stable but serious condition
HI everyone, it is Lisa. We are exhuasted and worried. It is 1:30 on Sunday. I just left the hosptal to get a shower and get away. Aiden is now resting very comfortably and in his Daddy's care. (along with a million Dr.'s and nurses) Aiden is having some serious problems with his new liver. It is not working. His liver functions (LFT's) are very high. Normal numbers run around 75. Aiden's when he was with his OLD liver was running around 300. His new liver LFT's are 6,300. This is not a good sign. The surgeon and the team is discussing putting him back on the national waiting list for another liver. This will be decided soon. They are testing his lab values every four hours. Trying to see if his liver will sort of kick in. Every hour that goes by is making it more unlikely. The last lab results showed that his LFT's did not increase any more. They sort of stayed the same. This is good news for me. At least it isn't worse.
There are parts of his liver that are working. (his new bile ducts) My beautiful child is now almost rid of ALL jaundice. He is that goergous pink baby I always dreamed of. Although we do not know how well he is going to do, I can tell you he does NOT HAVE BILIARY ATRESIA ANYMORE!!!!!!!!! I want to shout it from the roof tops. He is not diseased any more. His bilirubin is all the way down to 2.4. Never in his entire life has it been that low. EVER! Mine and yours is about 0.7. I asked the surgeon what the old liver looked like. He said that it was as hard as his chest bones.
When I was in Aiden's bed side, Joey and I were praying and telling Aiden to FIGHT! I said Fight my little baby, you need to FIGHT!! I told the angel that gave us this gift to help Aiden fight for his life. Sunddenly Aiden opened his eyes and began to reach out to us. He has his arms strapped down, but he held up his legs. I knew at that moment everything will be okay. One way or another, he will make it. He will live.
The Dr.'s are not promising us anything, but I don't need their promises. I have faith that my son will come back to me. I know it and I am telling all of you, he will fight and he will LIVE!!!!
I am going ot go back to the hospital soon. I will call Joey before i do see if anything has happened. If so I will post again. Keep checking in. Also know.I feel the prayers wrap around me like a blanket. I feel your words and know you are there for my baby and my family. Thank you for that.
XOXOXO kisses from Aiden
~~~~~~~~
Dec. 22, 2002 03:27
They just drew more labs and they are doing an ultrasound, to check where the blood is flowing. He is more stable than before. They kept having to sedate him, because he is fighting so hard he keeps waking up!! (that's with a morphine and versad drip going!)
I am rushing back to the PICU to be with my sweet baby. I love him so much. I just love him. He hears those prayers! Today Heaven became a more beautiful place as it welcomed in the precious child that gave my son his gift of life. God Bless that family.
~~~~~~~~
Dec. 23, 2002 12:27 (written by Kitt)
AIDEN IS BACK IN SURGERY
The ultrasound showed that his portal vein was not flowing--they are going to go back in to see if the liver is able to be saved. If it is, they will re-do the portal vein connection. If not, they will just close him up and re-list him for an immediate transplant. They may also have to take his spleen out and re-route all of those vessels. This surgery will be anywhere from 2-12 hours, depending on the route the surgeons must take.
We are all stunned by this turn for the worse--PLEASE pray harder than ever and send your angels to watch over the little guy during this surgery.
~~~~~~~~~~
Dec. 23, 2002 03:42
The surgeons just told Lisa and Joey that for now, Aiden's liver appears to be viable. They are attempting a graft with a cadaveric vein in order to facilitate the blood flow to the organ.
Lisa wanted me to please ask for a gift from each of you--talk to just one person you know and convince them to be an organ donor--it could change SO much--Aiden's status could have been addressed much earlier--before all the damage to his veins caused by his portal hyper-tension if there had been plenty of organ donors--this is a subject we just don't talk about or educate people about nearly enough. Right now a small section of vein could save Aiden's life!!!! She was on quite a tirade and I promised her I would pass this along. As for the surgery, it will last several more hours so I will update you as soon as possible.
~~~~~~~~~~~
Dec. 23, 2002 08:07
Just spoke to Lisa - AIDEN IS OUT OF POST-OP AND BACK IN PICU
She said Aiden is back in the PICU, and out of the post-op area. The surgeons are VERY pleased with how the surgery went, and expect his labs to improve through the night. Aiden's new vein is working amazingly well. He is completely pink (NO jaundice), and his Bilirubin is 1.3 All of his numbers are getting better in dramatic fashion, and Lisa said he squeezed her finger this morning!I was so happy for Lisa to have that happen. They are still going to keep him on a vent for a while, becuase the fluid is still present, as is the corresponding threat of pneumonia. They will keep him in the PICU and on the vent until his fluid goes down.
Fly like the Hawk you are, Baby Boy!!!
~~~~~~~~~~~
Hi everyone! Merry Christmas Eve from Aiden
Hi it is Lisa here,
A Christmas Miracle is happening. I am back at the guest house showering and getting Aiden's little books and toys ready for him for when he is awake. I had to go to Target because I have no clothes. Joey just grabed Aiden's stuff and ran to the airport. So here I am: no shower, no clothes, etc... Time to take care of me.
But I wanted to update you guys this time! I just saw Aiden. Now his bilirubin is normal. No toxins in his body! His amonia is finally back to normal! His fluid is decreasing, and he tried to open his eyes! I can not tell you what a fighter he is. He is fighting every second. He is still sedated and on morphine drip, but that boy is even trying to wake through it! The nurses keep saying Aiden is laughing at all of us, saying "you are gonna have to give me more if you wanna keep this boy down!" I believe it.
His liver enzymes are now decreasing and moving in the right direction. I am bawling my eyes out telling you this. MY SON WIL LIVE! MY SON WILL GROW AND PLAY AND HE IS GOING TO MAKE IT! I just know it. I was telling everyone at Target. "MY BABY GOT A LIVER FOR CHRISTMAS!!" they all thought I was nuts. HAHA
I am tired and need a shower and some good food. I am going to go back to the hospital shortly. My parents are with Aiden now. I love you and Aiden loves you. I am so hapy we are doing good. Of course we all know to be prepared. The dr.'s said this is a roller coaster and we need to keep the seat belts fastened. Go Aiden Go! I am the luckiest woman in the world, I am the mother to Aiden Hawk. ~~Lisa~~
~~~~~~~~~~~
Dec. 24, 2002 06:37 PM
HE'S OFF THE VENTILATOR!!!!
Just talked to Lisa--he's off and breathing on his own! WOW--I'm just speechless!!! Tears of joy, and a great feeling of triumph is coursing through my veins at this moment--I know there are more obstacles out there but WE HAVE TURNED A CORNER!!
What a Christmas present for Lisa--she gets her baby boy back, awake and able to recognize and respond to her--it'll take dynamite to blast her away from him tonight!!Pray just as hard but also take a moment to thank Him for all the blessings He has already granted.
~~~~~~~~
Update:
AIDEN'S NEW NICKNAME
Well guys--it seems the nurses have nicknamed Aiden and given him a mascot. They call him "Lionheart" Some nurses have even gone so far as to bring him various stuffed lions. So Lisa and Joey are busily procuring lions for Aiden--we are going to surround him with these noble proud strong beasts. He is on the beginning of a long road to recovery...but HE IS ON THE ROAD!! As I read Lisa's earlier post, tears were just streaming down my face as I'm sure they were for many of you--what a perfect Christmas story--complete with miracle!
~~~~~~~~~~~
posted Dec. 26, 2002 09:29
Improving with some bumps in the road
As the Dr.'s said it would be, this is not easy to watch him go through this. They had to take Aiden off most his pain meds. (don't even understand their resasoning!) I was furious yesterday. I had to watch the hardest day of my life. Poor Aiden. As some of you know his inscision was not able to be closed due to his intsestines swelling so much. SO he is left open in his abdomen. He has this thing called a Gortex. Kind of like a pad covering his insides. It is so awful to look at. Aiden is having some difficulty breathing. He picked up a lot of fluid after the two surgeries, and the fluid sort of stopped off in his lungs. So he his getting albuteral and breathing treatments. He hates it! He just fusses and tries to bat the mask away.
His swelling is down so much. He has lost 1.8 kilos in water weight. The surgeon said it is like me loosing 60lbs in water weight in one day! SO he looks like himself. We have been taking pictures like crazy! I have a pictures from almost every hour of the day since his surgery. Some are graphic and some are cute. His body is covered up it is just this sweet little face.
Last night Aiden's ng tube slipped down to his duodium (intestines spelling??) and it started to suck all of the bile out of him. I was scared because they had to do an x-ray and move it. But everything is fixed now. The new nurse this morning is awesome! first thing she did was call one of the criticle care doctors and got the okay for some more morphine and versed. So for the first time in 30 hours Aiden is resting comfortably. She just couldn't stand to watch the pain. Me neither.
We also got another ultrasound today. It showed excellent flow still. Aiden's new liver is kicking butt!!! It is awesome, He is fighting and making it a part of him. His bili is normal his liver functions are almost perfect! First time ever! I guess Aiden is goign to stay in the PICU for a few more days. When I tell everyone that he has moved to the floor that is the day to celebrate!!!! If anyone wants to visit, please feel free. I am bored right now, because I am letting Joey sleep. My family has gone home, my dad has surgery tomarrow. Aiden may not have visitors right now, but soon he can!!
Prayer requests: Please pray for him to have less pain. Please pray that he gets rid of the fluid in his lungs, please pray for me and my sanity. (I think I am loosing it slowly ) And pray for our donor family.
~~~~~~~~~~~
posted Dec. 26, 2002 12:13 PM (Kitt)
AIDEN IS IN DADDY'S ARMS!!!!!!!!!!!!!!
Just talked to Lisa...JOEY IS HOLDING AIDEN IN HIS ARMS!!!!!!!That is the best pain medication he could EVER get!!! He is also down to ONLY 5 monitors--that's down from like 14 after surgery!! Lionheart is fighting his way back to us!! I promise to bring lots of memories back with me this weekend
~~~~~~~~~~~~
posted Dec. 26, 2002 12:26 PM
OK I asked many questions..
I asked Why? I asked my favorite doctor our GI and he gave me some reasons about the pain meds. He doesn't totally agree with the surgeon, so he wrote for some if we MUST have them. I have a peace of mind now.
So here is what he said:
Some reasons to cut or discontinue pain meds are 1) they might make you retain fluid, 2) they might mask problems such as neurotoxic reaction to the IV Prograf (immuno suprresent), 3) they might mask after effects of all the anesthesia, 4) they might skew the results of the kidney functions or other blood work...plus its important to make sure Aiden is alert and having proper reflexes and responses.
So I am still suffering watching him in pain, but I can reason with it better.
Good news!:
Aiden is eating and taking his first bottle. He is also being held by Daddy. I am so proud. I am just so proud. The surgeons came in and said that Aiden is doing "excellent!". I never expected less. My little Lion-heart. He even played a little bit. sort of banged on a stuffed animal lion the nurses bought him. Talk to you soon. Getting a shower and going to shave my legs! Yahooooo Joey, will appreciate that hahhaaa
~~~~~~~~~~~~~~~~~
posted Dec. 27, 2002 10:27 AM (Sara)
Hey guys--just talked to Lisa--AIDEN IS GOING BACK INTO SURGERY--they want to see if they can fully close his incision He will be going in this afternoon so keep him in your thoughts! Am planning on heading to see them tonight or tomorrow morning--will make sure I post from there--am taking him a LION!
~~~~~~~~~~~
posted Dec. 27, 2002 04:23 PM
He is doing great!
They were able to totaly close him up, his swelling had gone down enough. He has a severed lymphnode and it is leaking stuff (whatever lymphnodes leak) so the sutured it up as well. He has done wonderfully all day, and I have even better news!!His bili is now 1.0!! His AST is now 28 and ALT 56!!!! Perfect! His liver is wonderful.
~~~~~~~~~~~~~
posted Dec. 28, 2002 10:06 AM
BAD NEWS (sara)
Wanted to update you on Aiden--he had a bad night and had to be re-intubated--here's why. When they were able to completely close him up with yesterday's surgery, that left very little "extra" space in the little guy for swelling--and swell he did--soooooo that compromised his lungs--they were just barely inflating and basically he was struggling just to breathe--in Lisa's words--at one point he almost started to quit and his heart rate went down to around 50--FROM 170! Alarms were going off and everyone was rushing in.
So, the surgeons decided to re-intubate in a hurry, in order to help him breathe while his little body is fighting to get rid of all this blasted fluid! Some severed lymph nodes are leaking, his intestines are swollen from the surgery, his liver is swollen AND they discovered (after MUCH badgering from Lisa) that his Foley catheter wasn't working!! So it is out now and a Urologist will see him today.
Lisa and Joey are exhausted from last night and the hour's sleep they got--they are going to only peek in on Aiden so that he will get no stimulation as the little guy is already trying to fight the sedation! He just needed a breather and now he's back fighting!
~~~~~~~~~~~~
posted Dec. 28, 2002 12:20 PM
He is very weak.
Little Lion heart is taking a break. He is very weak. I am not sure what is happening with him, but he is just too tired right now. He can't open his eyes, and he can't even fight. The vent hopefully will give him this time to recharge his batteries and get that ROARRRR going.
My little wisp of a baby has lost so much weight. He is now down about 3 lbs in a three days!! He is so skinny. His fluid retention is primarily his tummy. I just want him use this time as a "cat" nap. My Little Lion heart has impressed all of the nurses with his will to fight.
Please pray. We are so worried. We love him so much. This is a set back. BUt still he is going to pull though with flying colors. His new liver is working wonderfully. Aiden must regain some strength. Thank you for the jingles. Keep em up. XOXOXO
~~~~~~~~~~
posted Dec. 28, 2002 05:31 PM
Hi everyone, he is still the same
Spoke to the surgeons and a bunch of doctors. He is about the same. Not realy interested in waking. He is on very very minimal sedation and pain meds, but he is not wanting to wake up. He is responsive to the neurological tests so his brain is fine, according to the docs. He is just exhausted.
I just know that my little lion heart needs his rest to come back fighting. Little Aiden looks so peaceful. He is like and angel. Every once in a while I will be singing to him and he will suck his little lips like he has a binky. So sweet. He is just dreaming. Maybe playing in his dreams with his angel donor from Heaven.
They are giving him nutrition through his ng tube and through his veins (TPN). Keep jingeling. Thank you so much anyway, thank you for praying just wanted to update again. we are much beter rested. Devil can't get us down for long! I am going to support Aiden and remind HIM how special he is so he begins to fight back! Just watch he will, I know it!!
here is the link for Aiden's story in St. Petersburg Times
Here is Aiden's story:
http://www.sptimes.com/2002/12/29/SouthPinellas/Tiny_donor__giant_gif.shtml
~~~~~~~~~
posted Dec. 30, 2002 03:32 AM
New hurdle--COLLAPSED LUNG!!!
Little Lionheart has a collapsed lung His heart rate has been around 180 even with sedation but his blood pressure remains good. His left lung is collapsed--they are trying to get him to dislodge some mucous plugs (or as an utterly exhausted Lisa calls them "booger plugs"--we had quite a moment of hilarity over that one) The did a culture and we will know tomorrow if he has developed pneumonia or not. He is running between 99.5 and 101.5 temp. Just before she called me, Lisa and Joey were in the room when suddenly every alarm went off and Aiden's heart rate plummeted from 180 to 20!! They were terrified--they kept hearing the nurses and doctors yelling about Aiden being "unresponsive" until they finally got him stabilized. I can only imagine the terror and helplessness they felt.
Another issue is that he can no longer take even minimal nutrition through his stomach. They tried just 5ml over an hours time (about a tablespoon) and he just vomits it back up--anything that goes to his stomach is vomited back up. He has not had a bowel movement in 2 days now.
Please pray that we get these issues diagnosed and treated quickly. I have made Lisa promise to get one of the doctor's to script her some sleeping pills so that she and Joey can sleep when the opportunity arises. She was exhausted when she callled at about 2:45am but was too wired to sleep. Please also pray for Lisa and Joey to catch sleep where and when they can. We need your prayers now more than ever! Goodnight for now.
~~~~~~~~~~~~
posted Dec. 30, 2002 11:13 AM
Still Struggling
Aiden is very swollen this morning. On a positive note, he has had a poopy diaper but still no urine output. They have put the catheter back in and we are waiting for the cultures to come back. The big concern is a bacterial infection and pneumonia. An infection is actually more deadly than rejection for an immune suppressed baby.
He also needs to be transfused again and Joey is trying to donate blood right now. The biggest hurdle is tring to figure out what is causing all of this--once we know what it it, they can treat it agressively.
~~~~~~~~~~
posted Dec. 30, 2002 11:23 AM
Doing poorly, but we are praying for a speedy recovery
I have only a few seconds to post to you all but I want to thank you for praying and let you know what we have going on:
1) collapsed lung. His entire left lung is whited out on the Xray. He has some junk in his lungs, and they are doing all the albuteral, suction and CMP treatments on him. They have sent out for a culture on his lungs, in fear of pnemonia. If he has Pneumonia we will be dealing with a very serious situation. Right now we are treating him for pnemonia as if he has it, and if they find he doesn't they will stop those antibiotics and treat whatever the infection is.
2) He has some type of infection. His WBC count is VERY high. He is now HUGE puffy and swollen. In about 5 hours he gained almost 2 lbs in fluid. ???!!!!! We are not sure why. Many tests are being done. He is back on Lasix and albumin.
3) He is getting a blood transfusion. They are getting a bank set up so Joey can donate.
4) He was running a temp, but that is gone for now. His liver numbers are great. BUt that may change. They are checking for viruses etc... When it comes to transplants, rejection vs infection, you always avoid the infection.
I am scared. I want answers, but the team, hospital, staff etc.. is working on it. I trust them. I just KNOW he will pull through!!
~~~~~~~~~~~
posted Dec. 31, 2002 06:13 PM
Well, he is about the same but with some improvements.
We also have one peice of good news! Here it is. When they took him down to CT scan they went to look at the fluid and see what it looked like. If they were able to find a pocket that was accessible for a draw they would draw some out and send it to pathology. That could tell us more about what is happening. well they took him down there and they trid to draw some. It wouldn' come. Then he tried a second time. It wouldn't stop soming. They took off 330CC's of fluid. That is like 3 pints.(?I think)
It wasn't Blood from a bad bleed, it wasn't bile from a leak. It was benign Eventually it will go away.
I am in such a crazy hurry to get back to Aiden I am typing so fast. He is about the same sympotmatically wise. He is still needing major assistance breathing and went into respitory failure a bunch of times, even on a ventilator. It is SO hard to watch. All the alarms go off and they all rush in.. they have to bag him to breath for him. It is horrifying.
I KNOW he will be okay. I know he will pull though. He is looking a little better to me today. (maybe just the Mommy instinct again)Please pray for no more respitory failures. He needs to stay strong. Love you
~~~~~~~~~~~~~
posted Dec. 31, 2002
It is 11:10
I was suprised by Kitt and Matt tonight. They baked us lasagna, brought Italian bread, chocolate cake, sparkling grape juice (where's the good stuff??), plates, cookies, silverware, salad...Mine and Joey's own picnic for new years. Thanks so much Kitt and Matt.
OKay just for those who keep updated frequently, It is 11:10 New Years Eve, and Aiden is still doing perfectly. He has not had one respitory failure yet. No codes. At least this evening) But night time is when it happens. SO keep your fingers and toes crossed. It looks like we may have a smoother ride tonight. (knocking on wood right now)By the way, Aiden is resting MUCH more comfortably now that they drained so much. Phew! It makes me feel better.
~~~~~~~~~~~~~~
posted Jan. 01, 2003 09:31 AM
Quiet in the PICU
Last night our little cub slept beautifully. The first night in 4 days (that sounds weird) Aiden slept peacefully and did not have to be bagged or have any alarms go off, or sounds, or nurses rushing in. I slept for 4 hours!! Joey too!!
Aiden has opened his eyes every so often. I know he is sad. He even had a tear come out.I can't wait to get him off the vent, and squeeze him!!!! It is now our 11th day in the ICU and these four walls are getting old. I am ready to bundle him up and put him in his stroller and wheel him in the garden.
Kitt bought him a little sweatshirt that says: HERO. I love it. I can't wait till his tummy is healed enough to dress him in it!! This New Years is going to be one filled with health and recovery.
~~~~~~~~~~~
posted Jan. 01, 2003 07:13 PM
Aiden is doing awesome, breathing so good!
You guys, I am so happy to be telling you GOOD news for a change. Not only does Aiden NOT have a collapsed lung anymore, he is also breathing so good that he is breathing all by himself!! They have the ventilator set on "supported breaths" which means he can breath all on his own, but the vent just "helps him".
I was so excited!! The only thing is, we had to leave his room. They did not want to up his pain meds or sedation, becuase he deosn't seem to be in pain, (his heart rate is fine now) but whenever I walk into the room he struggles and fusses. I know it is because he doesn't understand why I am not picking him up. SO they have asked us to use the “minimal stimulus pain managment therory." That means I don’t want to bug him right now. I kind of agree because he gets really upset when he sees me. The he starts to choke and struggle with the vent. One time he even coughed and choked so hard blood came out. For some reason, Joey is ok though, he just soothes him. But with me he gets upset.
I am so happy right now about his recovery. I am so glad!!! I know it will only get better.
~~~~~~~~~~
posted Jan. 02, 2003 09:32 AM
Still doing very good
His liver is still perfect. They are hoping that the ascities goes away before too long but it shouldn't cause him any problems. It is taking is WBC and his albumin away, but they are giving him stuff for that. The surgeon came in today, and said that he was doing very good, and if the respitory team feels that Aiden is ready to come off the vent they will begin to wean him down! I am not sure if they will, but they might! Just don't want it to be to early.
He is such a fighter. He still fighting all of his sedation.
~~~~~~~~~~~~~
posted Jan. 02, 2003 12:00 PM
Aiden coming off the Ventilator!!!!
I want all of you to know that they are going to take Aiden off the ventilator this afternoon, or "extubate" him. This is great news, as it implies the confindence of the pulmonary team in Aiden's ability to breathe on his own.
Extubation is no fun, though, and they will have to let Aiden wake up so he can cough when they take out the vent tube. He will probably be very scared, and not like it much, but hopefully will be more comfortable afterwards. And hopefully Mommy and Daddy can HOLD him soon!!!!!
~~~~~~~~~~~~~
posted Jan. 02, 2003 03:40 PM
AIDEN IS OFF THE VENT!!!!!!!
Aiden is off the vent/extubated and doing well!!!! Lisa said it went much better than expected, and he's sitting in bed trying to figure out his tongue again. He's making funny noises with his mouth, and making little bitty sigh sounds when he breathes.
This is GREAT news, as this should mean nothing but improvement from now on (hopefully!).
***********************************
Back to 2007-
so much more happened, but i felt so compelled to share this amazing story with you all. Aiden spent 200 days in and at the hospital that following year. We spent 4 months in Atlanta away from home. He has CMV (a serious virus) in his liver, and many rejection episodes. But no matter what the complications... he made it through. That sweet innocent baby. That innocent young married couple, I feel so changed. I feel like it was some terrible, but beautiful movie I watched. But instead it was and is my life. Now you know why I say we are blessed. why it is hard to feel TOO down in the dumps. We have lived a miracle. And for that we are truelly greatful.
be a hero.. be an organ donor.
GOD BLESS,
Love the Hawk Family
5 years post transplant!
Wednesday, December 19, 2007 5:05 PM CST
Aiden and Mason are the luckiest boys!
Not only did my kids get to sit in Santa's lap... 
Mason
Aiden
BUT this Santa wasn't just a regular run of the mill Santa... it was their grandpa! 
And a silly grandpa at that!!
My dad dressed as Santa at the Christmas Party for the MOMS club, and after all he has endurred this year with constant pnuemonia, lung disease, bladder cancer... it was the best feeling in the world!
I love you daddy!
Friday, December 14, 2007 7:48 PM CST
Oh my GOSH I have to get rid of that update! I was depressing MYSELF!! Geesh.. ok so whatever.. diagnosis -shmosis.
How can I be depressed when I have the ultimate Aiden story for you?? Ok yes this is borderline totally innapropriate. But aren't ALL of Aiden's funny stories?? I just know it makes me laugh. You guys have to know this kid, to know he how ridiculous he can be.
I sit here listening to beautiful Christmas music with the lights on and my new fav candle burning (more on this later). Of course the Christmas music is sung by Alvin and the Chipmunks, but still there is something nostalgic about that. (I am wondering why my Alvin voice isn't nearly as perfect as it was when I had this music as a kid)
Anyway, so here I am all feeling good and sassy so after much debate I thought, "heck why not share this Aiden story. Yes it isn't even PG-13 it is definitly R, but you guys are used to it. if not maybe read another update LOL.
So we are heading to aiden's Dexascan. I have bribed and discussed and pleaded with him to just be good and believe it when I say it won't hurt. Aiden has created every sassy comeback he can think of and finally submits to me and says, "ok mommy I will do it." (oh was there a choice??) So we are heading back to the dexascan room. The radiologist are NOT ammused with Aiden at this point because he has already freaked out on them, cried, and lost it totally. I tried to tell them he hates imaging for some reason... so Aiden is angry and pouting but very silent. He is standing in the door way of the room and finally just puts his hands on his hips and declares:
"OK people you can do the dexascan.. but please NO pictures of my penis."
WHAT??????????????????????????????????????????????????
WHAT DID HE JUST SAY??
"No penis pictures at all."
I
Am
Speechless
My
CHild
is
making
me
age
at
a
rapid
pace.
So yes.. That is the funny Aiden story. I am sure some of you are pretty horrified, but hey I think it was pretty logical. He had seen the imaging on the screen of a lady's dexascan.. I think he thought, " if you are gonna have my picture up there for everyone to see.. make sure my privates are NOT in the pic."
So who knows why these horrifying moments make me laugh till I can't possibly be in a bad mood. BUT it works. he is a walking "most embarressing moments", and I love him!
I am sad a tiny bit cause Joey had to run into a phone booth and change into his "super citrus saver" costume. Joey was called off to leave town for several days because they found another medfly somewhere in florida. Pompano Beach Fl to be exact. So the State of Florida's, dept of agriculture, division of plants or something, called Joey from their special red phone and Joey zoomed off. :-( So we miss him soo much. But hopefully they won't find anymore of these "dangerous" fruit flies and he can come home next week sometime.
(if you are new to this site, let me say 1st I am sorry about the penis talk, and then second Joey works for the state and makes sure no dangerous pests or bacterias kill our citrus, thus effecting our farming and then economy. To sum it up.. Joey is America's true hero.. saving the economy of the world.. one fruit fly at a time.)
Ok sorry I am feeling a tad sassy tonight. Those little chipmunks have me going!
Another thing I want to discuss... did you know that Yankee candle is ACTUALLY WORTH IT???? I have never ever ever owned a Yankee Candle before. But it was one of my good buys on Black Friday. I bought "cinnamon sparkle" Yummmmmmm
Anyway.. I am obsessed. Who know a candle could mesmerize me in such a way!! I have never seen a candle actally melt perfectly around the top so there is NO wax on the jar! WHAT??? So here I am smelling delicous holiday smells and it is from a tiny candle across the house. These candles never lose their smell, they melt perfectly, I am in love. Who knew??!!! (well it seems a lot of people since I am the only woman I know who has never owned one before) YAY for Yankee Candles.. buy one this year as a gift for someone. Not those monster big jars, but the little jars. they seem worth it to me.
OK and my last rambling topic. This will be towards the United States Postal Serive:
Oh USPS.. Thank you for being way more reliable than UPS this year. Thank you USPS for delivering my cookbooks in incrediably speedy fashion! For not losing them (uhh I actually can't say I know that for sure) like UPS did. And thank you USPS for the invention of the "flat rate" envelope. Ahhhhh Love that.
BUT United States Postal Service, what on EARTH were you thinkin with those post office toys? Like seriosly WHO buys them? There are these beenie babies with big Mariyln Monroe Stamps on their stomach. Then there are some random picture framed stamps on the wall. Why? Why are these there? I take issue with these toys because THEY ARE TORTURING AIDEN! I can not take that child into one more post office trip and hear him beg me for one more Elvis bellied beanie baby or minature Mail box. Last week Aiden help onto the tiny blue post office box toy and cried. Like real tears. The real deal.
HIM: "PPPPLLLLUUEEEEASSSEEE MOMMMY! PLEASE SANTA IT IS ALL I WANT!!!!"
me: "You want a 2 1/2 inch mail box?"
tears streaming down his face. "More than ANYTHING I EVER WANTED. IT IS MY DREAM."
rolling eyes, yawning. (I had just heard this about 10 minutes before at the grocery store over some other random toy.) "No Aiden put it back. We aren't getting it."
He has repeated this same ridiculous dramatic display every day when I mail cookbooks out. Finally the USPS worker said, "Oh give it to him and put it in his stocking!" even she was ready to buckle.
I on the other hand have said no over and over and over.. tears and more tears and tears.
A few days ago, Aiden had a 24 hour heart monitor. A few days ago he got a new diagnosis. A few days ago I was reminded how precious everyone's time on Earth is. And how much I would do anything for him.
So on the way to the store, I swung by the post office. I walked up to that ridiculous toy area. I moved aside the dusty toys no one will ever buy. I picked out the post office box. I held it in my hands like it was some treasure. And bought it for Aiden. Aiden doesn't know. I can't wait for him to see it on Christmas morning. I guess if it wasn't for the tears, dramatics and the real "agony" he felt wanting that toy... we would never know the joy of watching him unwrap it on Christmas day. It is kind of like life. Sometimes the pain and the heartache is totally unavoidable. You know something we didn't cause, or do to ourselves. Sometimes it comes in the form of sickness, and a child hurting. I hate that he has endured so much, but I guess knowing what we all have overcame, it just makes days like these all the more sweeter. Sitting listening to Alvin and the Chipmunks, smelling the worlds greatest candle, and cuddling my two boys aching for my husband to be home.
Have a great weekend!! With deep love and thankfulness from our family to you.
Prayers for Savvy and Sofia. Please Lord give them the same Christmas Miracle Aiden was able to get. PLease Lord give them their second chance at life.
Love Lisa and Family
Wednesday, December 12, 2007 8:58 AM CST
So monday we went to the cardiologist. Aiden officially has been diagnosed. Aiden has Dysautonomia.
(Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated disorders)
I believe the type he has is called pure or true or primary dysautonomia or auotonomic failure. Once in NY we will know more of the specifics.
The appointment was good overall except well.. the news. (well accept the appointment! ha) I guess I should be feeling all exctied we have a diagnosis, but as the days pull further from Monday the sadder I am. I feel like a jerk for being sad when so many things good have happened to our family. I feel selfish and ungreatful that I am still heartbroken for my son, for my husband, for my family. Not only have we sold out of almost every single cookbook, but someone here in St. Pete was soo amazing and went to her company and they all together are making a $3450.00 donation to Aiden's American Liver Foundation account! What a blessing! We also have recieved two generous donations from the same church in Perry Georgia (Perry United Methodist Church) two Sunday School Classes donated to The fund. Not only that but so many other blessings have come to our family in the past weeeks. So why am I still sad?! You know why? Because it hurts. It hurts to have a sick child. It hurts to see him cry and to ask why he is so sick. It hurts to hear the things we heard at the cardiologist. It really hurts. I feel God's hand all over our family. I feel us being lifted in prayer. I know that we will be taken care of and that no matter what happens we will be ok. But it still hurts.
You all know the drill, you have been reading this site for years. You know when we have a bad day or two it is usually followed by a ridiculous amount of silliness and playing. We will get through this. We have learned the art of denial. We have learned how to focus on our blessings and how to defocus off the pain.
The cardiologist explained to us in a very sincere voice, "I want you to know up front, there is a large chance we will not be able to help Aiden."
Stop breathing. echoes in my ears. Fuzzy dots in my eyes.
don't faint.. don't faint in a cardiologist office.
OK so. what are you saying?
"He has at least 4 organ systems effected by this dysautonomia that I can tell. " (heart, lungs, Kidneys, GI)
There is a chance if all the things line up the way we want it.. and this is a BIG equation.. we can do a betablocker on Aiden. This may control his nervous system. If not.. then I am not sure what options we have.. I do know I will travel the ends of the earth for him. I will go to NYU I will go to VANDY I will go to Mayo I will go to Cleavland.. whatever it takes. I want him better.
So for now.. we just finished his Holter Monitor, we have a card monitor for one month.. and now we wait. We wait and see what they tell us. I am praying. I am hoping that soon we have some incrediable options for him.
Please keep praying for him and our family. Thank you all for everything. the notes, the love, the phone calls. We need it. And if I haven't called you back and you have left me a message.. it isn't personal. things are tough and we are trying our best. Just keep calling, and I swear I will talk with you.XOXOXO
Love you all,
Lisa
Sunday, December 9, 2007 1:22 PM CST
So today's update is simply the life and times of the Hawk family... via photos. There is an update and some good ole fashion venting at the bottom, if you should choose to read.
So where did I leave off?? Oh yeah, the hospital. Well you guys don't want to see the sad photos, so lets just show you what Aiden's 'club house' looks like at the hospital...
Note.. you have to knock to enter. And absolutly no exceptions... NO WHITE COATS ALLOWED.
And of course when you are in the hospital, you MUST have your "lady friends" visit. Nothing like a little Spongebob house coat and some slicked back hair to charm the girls.
Then life gets a tad better and we get to GO HOME! Well but only for a few days and then back into the hospital. Phoey. But luckily it was so short momma didn't even bring her camera.
So life resumes as planned and the tradition of fighting and screaming and crying over the Christmas photos continues. Ahhhh tis the season.
First we have the ultimate photo. THIS was to be everyone's card this year but many friends veto-d my sense of humor. Of course if you would like to reply in my guestbook that this was actually funny please do so. (hint hint)
Card to read: "We got you a present... But Mason ate it." Merry Christmas
Anyone think that is funny? I do.
But of course there were more adorbale shots, such as these...
Does Mason look like he is planning something evil?? This photos cracks me up to tiny peices.
Well not too bad, Aiden looks absolutly genuine and darling.. Mason well, sort of zoned out.
the real photo to be annouced later, even though I will be making a special few of the mason nose picking ones for some certian people who I KNOW will think it is funny.
Onwards... So then we FINALLY got to go on the BOAT!! Gosh Aiden and Daddy had planned on fishing together for ages, and wouldn't you know EVERY single fishing date we planned Aiden was sick in the hospital. So... as a family yesterday we shared in an wonderful and special time
Ok so Rolex was floating away, yes no passengers on board, just the dog. But joey pulled his little saftey line and saved the day. 
Mason had a good time for the first 5 minutes...
then promptly fell asleep like always.
Aiden assumed his normal position as first mate, and then nearly wrecked us into a crab cage.
Then... we saw these little black humps in the water.
MANATEES!!!!!!
Seriously.. wait for it.. these photos are soo precious...
there he was, with a family of manatees, they came to our boat to say hello.
one lifted his gentle head out of the water just inches from us!!
Another one came to the back of the boat at the same time!!! It was about 20 minutes they played by the boat. I was starting to panic though that some jerk would come flying through in their boat and hurt them. We had our motor totally off, and the trolling motor to pulls us through, but some people don't have any sense. And I am like the manatee police waving my arms and yelling at people. Yesterday fortunatly I didnt' have to.
Other than the wonderful manatees, there was Christmas cheer on the boat! Rolex donned his Santa hat!
And so did Aiden.
Mason finally woke up and drove a little. Thank Goodness there was no one on the bay barely, because driving isn't Mason's top qualities. Organizing my cubords, sweeping the floor, picking up tiny fragments of dust on the rug.. yes mason... Driving.. No.
It was a beautiful day. 80 degrees and sunny. Then on the horizon we saw a beautiful rainbow.
Of course rainbow.. means RAIN... so we headed in.
as did the pelicans.
I was at church today and they were talking about how florida is so amazing this time of year. I have to agree. Yeah, get over it, no sweaters or fun winter clothes. But the boys are swimming in the kiddy pool, and it still feels like summer but with less humidity. Life has been so good these past days. I slept better than i ever did on Friday night. Last night not so good, but after hearing the news of a probable diagnosis for Aiden, I feel at a tremendous peace.
It has been over two years since Aiden FIRST fell to the bathroom floor unconsious. He was pale, and sick. I was terrified. I rushed him to the Emergency room and remember that day like it was yesterday. The ER doctor said he was fine he just had some weird syncope. I was panicked. Something was NOT fine. I knew it. My child doesn't faint. My child doesn't do this. His lab results come back and his red blood cells were severely elevated. He got labs once a month, I had never seen this in his 3 1/2 years. They again said it was nothing. From that day I knew in my heart something was wrong. I knew that you don't just start falling unconsious and pale and then red and then veiny and then have crazy labs and then vomitt and then have water diahrea and then stop sweating and then have a crazy low heartrate at night, and then develop severe high blood pressure out of no where and then and then.... IT JUST ISN'T NORMAL. I finally found a place where yes they all agreed it wasn't normal. And even yes they agreed it wasn't just some tummy bug... but then what? I still had that voice inside screaming in panic for them to figure it out. It never went away. never. Not until last week.
After two years, lots of hospitalizations, IV's blood draw, bonemarrow biopsy, testings, echos, EEG and EKGs, sleep studies, and oxygen moniters. Scopes of this GI tract, antibiotics when not needed, steriods when not needed, ultrasounds, MRI and MRV of his brain,... after finding second opinions and then thirds, finally switching his entire transplant care to a new hospital... all of that. It went came down to a phone call, to a doctor in New York. She knew immediatly. And then we all did.
Can I just tell you that in my heart of hearts, I believe again this year, we have another Christmas miracle. And yes finally we have some Peace.
Thank you for traveling on this road with me. I can never tell you how it feels to finally have it all fit. To even find out that there is most likely a medicine or even a surgery that could help Aiden from ever enduring this hell again. Thank you for the prayers and the love and the well wishes over the years. For listening to me go on and on and on about his labs and his veins. YOU GUYS listened. Sometimes when the doctors wouldn't. Do you know how hard that is?!!?? But finally I believe it is coming to an end. I at least have HOPE that this is coming to an end. They will make him better.
Tomorrow Aiden will see a cardiologist. They will place a simple heart monitor on him for three days. It is called a holter monitor. Pretty common. This will tell us what his heart rate is doing during the day and especially at night. I already know what it does at night. I have known for 18 months. I have documented it for 18 months. But now we will 'offically' know that his Heartrate drops dangerously low at night and thus we have all of his problems. A high level of hemaglobin to keep his oxygen levels high. Fainting, vommitting, diahrea, dehyrdation and dusfunction of his autnomic nervous system, due to basically his body doing everything it can to keep his heartrate up. All becuase of this thing.
Christmas 2007 defintly nothing compated to Christmas of 2002, his Gift of life. But this year I am praying thathe will get the Gift of a QUALITY of life. After that... what else can we ask for?
I hope you enjoyed the photos and thank you for stopping by.
Check out the counter on the bottom of the page and PLEASE sign my guestbook if you are guest number 200,000!!!!
With love and thankfulness
Lisa
Thursday, December 6, 2007 2:38 PM CST
OH MY GOSH... My (wonderful) Pediatrician just called me and told me she spoke to Dr. Axelrod in NYU. They discussed Aiden and she said, that she suspected that Aiden's heartrate drops very low at night called bradycaridia and then his sympathetic nervous system kicks into a full gear causing these horrible spells. It has a special diagnosis...a special name to this disorder, so she told us to get a 3 day holter monitor and a loop monitor to check his HR at this time. At that piont I was like jumping on the couch saying, "YES YES His Heart rate drops really really LOW at night. we know this because when he has been admitted and monitored over night from anaphylaxises and even his sleep study they have to change his HR settings because he sets off ALL kinds of alarms. He started do that when he started getting sick two years ago!!! He was even given a sleep study and his HR dropped really low, but his O2 sats were perfect.
(WELL I WONDER HOW THAT HAPPENS?? Maybe the fact his bone marrow makes extra hemaglobin to supply oxygen with a low HR?? )
OK am I getting ahead of myself?? I am just wild thinking they really ARE going to diagnos him. we just need some testing to verify this. Then yes possibly there is a medicine they can give him?????? Please please pray. PLEASE. We have not given up an ounce of HOPE! our HOPE rises and rises with each day.
THANK YOU and I will update you more. ASAP
PS/ BEST news she cancelled the MRI of his brain and spine.. no need to do that right now. Praise the Lord.
Praying and praying
Lisa
PS/ Below is some older journal histories where I talked about his very low HR ...
Here are few things I pulled off my journal history from before talkin about his low HR.. we also have to adjust the monitors at the hospital. How strange
Wednesday, May 31, 2006 5:50 PM CDT
I only have a quick second to update the nurses are sooo sweet they are letting me use the "nurse computer" :D
Aiden is heading to a sleep study in a few minutes. He had a CR monitor on him all night respitory and breathing and heart rate or something... Anyway, his HR was in he 50's and he only had 12 respirations a minute.
~~~~~~~~~~~~~~~~~~~~~~~~~~
Thursday, June 1, 2006
The sleep study came to a dead end. He has no sleep disorder. Just a low HR when he sleeps, but his O2 is fine. It isn’t the easy little fix I hoped for.
~~~~~~~~~~~~~~~~~~~~~
April 2006
His heartrate was low for his normal, but they kept saying it was the benedryl. He was screaming at the top of his lungs and his HR was in the 70’s.. not typical AT ALL. But 4 hours later when he was setting off the pulse alarm with a 65 pulse, I just wasn’t buying it. Benedryl is something he takes EVERYDAY.. he never is sleepy. He slept a lot of the time. He even laid there and wet him self and never got up. He just wasn’t normal. His blood pressure was lower than normal as well, But it was all in the normal range. Just not normal for what he was going through.
Tuesday, December 4, 2007 5:58 PM CST
Please visit
www.caringbridge.org/ga/haley
Cheryl has taken the time to share her story. To really share it and what it means. I was there for it. Most all of it... but to read it and then to just glean some wisdom from her tragedy, well, it is just hard to describe.
~~~~~~~~~~~~~~~~~~~
UPDATE
OK. So I can not even believe that I am about to type this BUT.... I have to make a second order of cookbooks!!! The 567 I ordered appearently was no where near enough considering I have people asking us for BOXES of them! whoo hooo... I am just so happy about this. The exciting thing about odering more cookbooks is I just have to fax something instead of all that work. (oh and pay) I am so happy though this fundraiser has been a great sucess!!
In other news. Aiden good, but is acting a tad weird. Pretty much normal, but every so often he says his arm is weak. His leg is weak. He complains of his groin hurting him. He asks me to "stretch" his muscles. Pull his arms. Pull his legs. It is sooo strange. I thought the arm thing was his IV arm but now it is still happening for a few days. I took him in yesterday and one of the Pediatricians took a look. She said she didnt' see anything abnormal. But to keep an eye on it. I am just watching him.
Tomorrow Mason Grady has a nuero appointment follow up. Aiden will also share in on the fun and get seen by the neurologist. maybe I will mention the weird weakness in the arm thing. Who knows.
Joey's birthday was yesterday. He is now a whopping 34 years old. We got to get out to dinner together, it was nice. Wish every year we didn't have so much stress on his birthday. Last year you may all remember we were awaiting bonemarrow biopsy results for the same thing Aiden has going on now, after a long admission. And the year before that Aiden had Pnuemonia and Parainfluenza virus. Admitted again. The year before that we were coming off a trip to Atlanta for an endoscopy and his allergic reaction flares. He had an anaphylaxis. The year before that Aiden was scoped for eosinophils and that is when Joey and I had discussed possibly moving to Altanta due to the number of admittances he was having up there. And the year before that... well Aiden was very ill. Waiting for a liver transplant. He was bleeding at the time. But soon.. his liver would come.
So yeah, this time of year typically is difficult for us. But it can't keep us down for long! Because we are soon to celebrate Aiden's transplant anniversary. Celebrate his life. FIVE years post transplant, is such a monumental number. It is the number where the statistics stop counting. I don't have to wonder, "what does UNOS say about Aiden's survival rate THIS year?" Cause I don't care. I don't like numbers. They are just numbers. I feel so lucky and blessed and thankful that Aiden is here with us and he usually feeling great. I know the hospital visits and the stays are difficult but he is so full of joy he reminds me to keep laughing and smiling. Even though I do feel like crying sometime.
I have to tell you a rather hilarios Aiden story. OK or maybe a few funny stories.
Aiden was admitted a couple weeks ago (time before last) and I was collecting his pee. Remember the pee on ice playdate? Well anyway, He had his little visitors in the room. So Aiden and I went into the bathroom and shut the door behind us for some privacy. I was reaching for the little urinal for him to pee in, and all the sudden Aiden gets this really loud voice and starts yelling:
"GOD MERCY!! GOD MERCY!!!!!!! "
Uh huh? WHAT is he saying?
"GOD MERCY!! PLEASE DON'T HIT ME! DON'T HIT ME!!!!"
WHAT IS HE DOING???
"NO NO I BEG YOU PLEASE PLEASE GOD MERCY DON'T HIT ME!!"
OK so yes Aiden thought it was hilarious to go into the bathroom with me and and start screaming for me to stop hitting him. I was laughing SO hard because it was SO out of left field and I just kept thinking, where does this kid get this sense of humor?? He is so funny. So him and I are hysterical in the bathroom, I can't even scold him for pretending about something like that. But then he proceeds to later go to the nurses station and scream it there!!! They were all just DYING on the floor. I was beet red, saying... "I swear I do not hit him. I do not hit him!"
And he is only 5.
His new favorite thing to say is this little phrase... "Good times, Good times" He just smiles this little smile and says those words. He is really just the funniest kid I have ever met. There are times I wonder if this is a "hospital kid" thing. Haley was like this. Sarcastic sarcastic funny.
Last admission Joey was telling me about another funny thing Aiden did. Aiden was sitting in the hospital bed playing video games...
"Aiden can you read those numbers? What is the number to the cafeteria?"
"6336 daddy"
Joey dials the number and calls down to the cafeteria to order some of Aiden's rice drink and food. The next thing you know Aiden cups his hands over his mouth and just starts yelling...
"JOHNNY!!! THAT LIVER BOY IS BACK! YOU BETTER CLEAN UP THAT FLOOR!!!!... JOHNNY HE HAS ALLERGIES PICK UP THAT FLOOR!!!!!!"
Ummmm....
what on EARTH? This is Aiden speaking for the cafeteria staff.
DID I mention he flushes his own IV lines? Did I mention he uses the call button and calls the nurses when his lines beep? Did I mention that he is just the best? I love this kid!
Mason fell down today at the park. I ran to him. Aiden beat me there. Aiden kissed his legs, kissed his everywhere, while I held a crying Mason.
Last night I was tucking Aiden in bed. He said to me, "Mommy do you want me to rub your back? I want you to be comfortable. I love you Mommy."
What would I do with out him? Too hard to even think about. For now I will just rejoice in the fact that my very smart team of doctors are working hard to give him a good quality of life, and have faith that it will happen. We have come this far, I know it will happen.
Anyway, have a wonderful week. Make it a special one.
Love, Lisa
Saturday, December 1, 2007 12:49 AM CST
HOME!!!! Aiden is home, and feeling OK. Not perfect, not great... OK. one minute he is all silly and digging holes in the back yard, and the next he is laying on his floor resting. I am not thrilled with that but what can we honestly expect. He doesn't feel good. I am shocked he has been so resiliant so far.
Anyway, I am just so thankful he is home, but now we are back to our normal. That means the house which is trashed needs cleaning, and the dirty dishes washed, and the beds stripped, and the laundry done, and oh geesh make dinner and hang christmas lights and joey has to work his landscaping jobs and I have to.............
Breath.... Breath....
Last night I was all decked out in my leopard print flanel PJ's and headed to the grocery store with baby in diaper, and Elmo PJ shirt. We make a B line to the icecream and I purchased a 1/2 gallon of breyers chocolate, and a box of WHitman's samplers. Yes I was in my PJ's at the store. Whatever, I dare ONE person to look at me and say something.
MY KID IS IN THE HOSPITAL FOR THE 3RD TIME IN THREE WEEKS!
I swear one person challenging me would have been so theraputic! But instead I engorged my face with junk food, read two gossip mags (Did you know Britney is preggers AGAIN!?) and watched House Hunters.
So like I said, back to normal, whatever the heck THAT seems to be. I do know that there was a lot of kissing and hugging between brothers when Aiden came home. That there is a lot of kissing and hugging and loving each other in this family. Nothing taken for granted. Nothing. I love my boy, and I am determined to get him through this.
So... New York Here we come. The big Apple will never be the same.
I will let you know more about dates soon. I have some V.I.P. that we will be seeing. Jack, Angus, Dayton, Ashlee, and of course some grown ups too! LOL
XOXOXOXO
Holding my sweet boy at HOME
Lisa
Friday, November 30, 2007 2:07 PM CST
Hey all back at club med, aka spa ala Children's hospital. Aiden is bouncing off the walls being silly with his daddy, after getting his IV fluids and IV zofran. I on the other hand am at home with baby Mason, who is sick and feeling pukey. Nice.. so I got to wake up to my sweet 5 year old's voice saying, "Mommy I need IV fluids", watch him collapse, vommitt, diahhrea, turn pale then turn veiny then pale, rush him to the ER hold him while he gets the 10th IV in a month, wash out puke buckets, and change dirty undies... ALL to come home to a tiny baby who is listless and sick and miserable.
YAY this is FUN!
On the other hand sweet daddy is with Aiden watching Spongebob and eating cafeteria food... sounds like a nice day in my opinion.
OK I am not bitter. This is what MOMMY'S do! This is what the ovarie carrying individuals do. And we suck it up and hopefully get a REAL spa day for a reward. Of course hearing Aiden tell me he loves me and thanking me for loving him was all I need. My sweet boy.
SO anyway.. Aiden Update:
Aiden's pedi (super Pedi who is on her day off and calling and working for hours on this) called me to tell me that she spoke with cinci. She actually said, "wow they are GOOD!!!" they wanted Aiden to go to the clevand clinic, where they specialize in this dysautonmia, but said the NYU would also be a good option since we have a local child here with dysautonomia who goes there as well. I am just praying that God is guiding them all and that we will end up the right place.
I guess they have a laundry list of labs and evaluations ready for Aiden and we are just waiting to see where we are going next.
I asked, "why on earth is this happening all the time and we have been good all year?" and she said, "This is how dysautonomia works, the brain tells the body to not work, and it happens in these stints." I am so sad about it. I am still holding out hope it is another diagnosis and they are all just wrong. Boo hoo.. But it just doesn't look that way.
I just pray and pray that his brain won't tell his heart to stop beating or the vessles won't cause him to have a criticle situation. I am so scared of that. How long can Aiden go like this? How many things can be stacked against him? I am still full of HOPE but it do feel exhausted.
I love our doctors, I love esp my pedi for being his champion and working so hard to save him from more of this. I am just feeling blessed that he is in good hands. Of course of all he is in his Father's Hands. I think of Jeremiah 29:11 and remember He has plans for Aiden. Plans for hope and a future.
Mason is alseep finally he is feeling better after a little "duce" aka Juice.
XOXOOXXO I will update soon.
Friday, November 30, 2007 8:08 AM CST
This is Jen & Jon's mom posting for Lisa. Aiden is being admitted again. The same stuff as the last two admissions. Poor little guy told Lisa he needed IV fluids. Lisa has been giving him over a gallon and a half of fluids a day but(as I understand it)his brain is telling his body to pull the fluids from his veins so it doesn't matter how much he is able to take in by mouth. This family so needs a break. I am hoping and praying a referral comes soon to a doctor who can help Aiden.
Karen
Wednesday, November 28, 2007 1:58 PM CST
YAY
Cookbooks arrived Last night!!! WOW it was a lot of cookbooks.. you know how much?? (you are dying to know right??)... keep waiting keep waiting...
Well.. Barbara, you got it right! 568 lbs! exactly how on EARTH did you know??!!! I will have to say that Ms. Vicki Lynn was the second closest! Funny thing both of these people are of the very first mailing of the cookbooks! How exciting!!
If I have recieved your payment, your cookbooks have been SENT! THANK YOU! If you are wanting a cookbook please go ahead and email me! RolexH@aol.com I have already sold about 200 or so cookbooks, actually I think more.
I would like to say a special special thank you to my brother Tim and sister n law Vera for the most generous effort on selling cookbooks. If this was the girlscouts you would defintly get the badge for the most sold!! THANK YOU!! You are just so special to us. XOXOXO
I love the cookbooks. I just love them. They came last night and I opened the first box, pulled out the first book, and wrote on the inside. 1st edition. I have it saved in my Hope chest.
Things are good here, The boys are well. Mason is sassy and cranky, and not being a 'good boy' in therapy. He has just started music therapy, it was so cute. Too bad I couldn't hear the lady singing over Mason's blood curdeling screams. Yes the peircing shreiks of his cry was just not meshing with the acoustical guitar and the sweet rendition of Wheels on the Bus. Oh well... at least he has some spunk.
We have appointments aproaching. Dec 5 is nuerology for mason AND Aiden. Nice to fit them both in at once. Gee, one stop shopping. And I am waiting to hear about the trip to the dysautonomia hospital. Dr. Axlerod at NYU seems to be one of the people they want us to see. It should be fun to get up there, we have many friends up there as well as family! Hey who else can say their hospital trips are vacations? It is one way to view things.
So anyway, I just wanted to make one note. Just wanted to say a prayer for our sweet neighbors. Our neighbor Mike passed away over a week ago. Tonight was a beautiful service in his memory. Please keep this family in your prayers. Mike was only 60, he has three children, and an amazing wife he has left behind missing him. I will never forget his smile. He was a wonderful man.
Anyway, God bless you all and I will update soon with all the photos I have yet to share.
XOXO Lisa
Monday, November 26, 2007 7:41 PM CST
Ahhh Christmas time. I love it! It makes me just so happy to put on my sweaters and cuddle in front of the fire... OH wait! I live in florida and it is steaming hot here. Like sticky hot. So hopefully a cool breeze will be coming soon. This weather is just not working for me, as I am setting out the christmas lights and decorations.
So Black Friday. Did you all go shopping?? It was a good one this year. I mean not GOOD, but you know, better I guess. Last year as you might recall I went for the first time. It was brutal. I was an ametuer. I figured that yes since I have braved the streets at 4 AM last year, I will be soo much better off this year. No not a chance. INfact this year, I have learned something from the more wise shoppers people like my sister in law Shelly. She is the real deal. Not afraid to set up lawn chairs and wait in big scary lines. WHO does that??? Shelly does. So I thought, ok I wil do that too. But as usual I did it all wrong. I drove all over the land picking up item here and there, grabbing my coupons, rushing and panicking at Micheals for that last scrapbook caddy. WHEN darn it all.. You can JUST do WALMART. They match everyone's coupons. So why not just get your ads, find what you need, and then do the one stop shopping? OK yes, Walmart to me sort of equates to what Hell must be like, but it is easy. I could have gotten the grill cleaner for my brother, the elmo garage for mason, the jumbo remote for my father in law.. all in one roof. So go figure. Even though I have checked my entire list off, I have learned in my sophmore year of shopping that I know soo little.
IN other news.. COOKBOOKS. Are you sooo sick of hearing about this?? well Gosh it JUST began! I had a tiny drama with the cookbooks. They were set to arrive on Sat over a week ago. Aiden was admitted in the hospital, things were crazy for us, but I realized.. "Hey WHERE the heck are the cookbooks????!!!!!" So I get ahold of Morris Press and they tell me they never recieved payment. Ummmm NO..?? We HAVE the confirmation. WHAT ON EARTH? SO after a few minutes of investigating they realize that since my mom has paid for the upfront costs of the cookbooks they created an account for HER and didnt' apply it to OURS. Uhhh HELLO crucial information here. So since I was sitting uhh, about 3 feet from my son's hospital bed they managed to catch me in the right frame of mind. You know, "when we are in the hospital we DEFINLTY don't sweat the small stuff" Ok even though this wasn't THAT small, and yes we PAID for a rush shipping for a guarenteed date, I was still amazingly calm. (call it delerium) The very nice customer service lady thanked me for my calm responce. Infact I could almost see her wincing and flinching ready for me to hit the ceiling. SO they refunded us ALL of the rush payment fee we paid. A total of $385.00 and they were put on a truck THAT day. Soooo.. that leads me to say. I have been tracking the cookbooks... and they are in ORLANDO... ready to arrive tomorrow in the morning! WHOO HOO.. I am soo excited.
Copying from Cheryl's "ASSIGNMENT AMERICA":
I have told a few people how much this shipment weighs, but I thought we would play a little game. So if I haven't told you how much the total shipment weighs and you want to play along.... we will do a fun little game. Go ahead and make a guess on how much these cookbooks weigh. I was shocked, maybe with a little logic others won't be shocked. But I sure was. We have 565 cookbooks arriving... sign the guestbook and let me know you estimate. Who ever is the closest wins!!! What do you win you ask??? ...well.. um.. How about, I will gloat and tell you how brilliant you are. How is that?
OH yeah Medical stuff. You aren't here to hear about my Black Friday, you are all sitting skimming looking for a REAL update! So here it is: Aiden is doing AMAZING. I am so excited. This ridiculous amount of fluids seem to help him so much. I just heard from someone in cinci today, and our local pediatrician called me today to tell me that they have a refferal for us at NYU. (now use your best country accent and say with me... "NEW YORK CITY???") Yep New York. I am not sure if that is where we are heading, but Cinci will be making the final arrangements. I am just ready to move on and get him fixed. Although I am just so scared at what all this really means.
And THAT is that! I will upate when we get the cookbooks. Remember, if you have pre paid and pre ordered I have your envelope labled and ready to GO! ( or box for some of you awesome folks who bought many cookbooks) So if you want a cookbook just email me at Rolexh@aol.com
They cost $15.oo each with a $2.00 shipping fee. If you buy more than one it is $14.00 each so bascially 2 for $28.00 etc... the shipping fee is one flat fee.
They are GREAT for teachers, and your pediatricians, or your neighbors, or people at church, or that great aunt that collect cookbooks.. or.... or... OK ANYONE!
Just remember to type in the title COOKBOOK or something like that, so I know it is YOU. :-)
And let the guessing on the shipment weight begin. Can't wait to see what you think these puppies weigh. ( just go along with me folks I am working on small amounts of sleep)
XOXOXO
Lisa
Thursday, November 22, 2007 8:09 AM CST
Home... ahhh... it took all of 15 minutes to be normal again. Even though every few moments I think of what we have been through, and how scared I am for Aiden, and I dont' feel so normal.
I figured yesterday I would either 1) be a hermit and wear PJ's and not leave the house or 2) put makeup on, jewlery look cute, and get out and pretend like we are JUST like everyone else in the grocery store.
I chose number 2. We went to Aiden's friend Spencer's house. They boys had so much fun. Aiden was totally back to his normal self. He did start to heat up and we sprayed him and all the kids with water. Then the boys thought it would be fun to play in the kiddy pool/ hose. So sure why not? It was 85 degrees out. So we put on their swim suits and they played and played in the water. Ahhhh I was able to relax because it cooled down his body tempature quickly.
Aiden looked amazing yesterday, so happy and just the only way I like to see him. He was sad in the hospital, and it shatters my heart to a million peices. He also is drinking drinking.. by 10:26 AM he had finsihed 32 oz of gatoraide. But the end of last night Aiden had drank over 1 1/2 gallons of fluid. This is normal for him. This is what we have been doing for over a year because we didn't know why, but it kept him cool and out of the hospital. Now.. we know why. If he has this autonomic nervous system disorder, then this is how you help treat it. I am praying we can stave off a port (IV on his chest) and nightly IV fluids. I think that sounds terrible. But it is also a possible way to make him have even a better life. We will see.
So here it is Thanksgiving. We are home. In the tradition of this holiday, we have never been admitted. Thank God. I guess some of our dear dear friends didn't like the idea too much of pizza for thanksgiving, so they gathered together a Thanksgiving meal for our family, including turkey and pie. I feel so lucky. Joey was in shock, and just couldn't stop thanking one of our friends. It just really really really ment a lot to him. All of us.
So this thanksgiving, the things I am thankful for are pretty much the things others are thankful for. But to me... I just mean it to the n-th degree. I am so so thankful.
I am thankful Aiden is here with us. He is doing ok. They are working to make him well. I am thankful that I have my boy. That I am holding him and he is squirming to get away because he is so busy playing and being full of zeal and life and just energy.
I am thankful for Mason, that he reminds me to slow down. SLow down and just sit and watch. He reminds me that yes people are born with an inherited sweet nature. That picking flowers, and petting puppies are things that are free in life and can make you feel so good. I am so thankful for Mason.
I am so thankful for my strong husband. A man who makes scavenger hunts in the hospital for his boy, a man that holds his wife when she needs it. A man that has made our finacial burdens JUST HIS. WHo provides, and leads the home with an incrediable peace and love.
I am thankful for friends. Ones who walk this walk with us, with sick kids of their own. And the one who choose to be here in this world even if they don't have to.
I am thankful for our family. So many people leave you when you live the life of a chronically ill family. SO many people think, " that is too sad. " " that is too negative".. but not family. For better or worse, we have each other. Thank you to my parents who keep Mason so much, and to Joey's parents who are currently here helping with this admission. We know this isn't what you expected either, but just like us... you see the beauty that comes from it.
I am thankful for so many things just like everyone is today. But there are some that aren't having the day of celebration. The ones who are still in the hospital, or who are grieving their loss. Today I will hug my children tighter and I will savor the moments more, because I know they would if they could. They would want everyone to know that is what we are supposed to be doing.
Thank you my friends for reading, and for signing the guestbook, for taking the moment to let me know you care and that you are reading and praying. It means so much.
Happy Thanksgiving. God bless your family and Home.
The Hawk Family
Tuesday, November 20, 2007 3:22 PM CST
Goodbye nervous break down.. hello breaking free! we are getting DISCHARGED LATE TONIGHT!!!!!!! :D
whoot whoot..... inserting photo of Aiden dancing like a fool
this even calls for a circus baby photo! Whoot whooot
We are waiting for the nuerologist to come in and speak to us. I am just imagining what he might say. I am sure it will be somehting like, "gee didn't I say this diagnosis over a year ago?" Nahhhhh he is a nice guy, and so happens to be Mason's nuerologist so I know he won't. But anyway, he is coming to see Aiden and then since MRI threw a temper tantrum and won't do Aiden's MRI "because he needs an anesthesia consult since he is allergic" we are leaving. MRI basically had a hissy fit because it is thanksgiving week and no one is working and putting in a 4 hour scan was not making them happy. Yes you read that right, the MRI was going to be FOUR hours. Uhhh no thanks.
SO here we be! Aiden is using the bed as a slide, Joey is setting up a scavenger hunt for him, I am nursing a migraine from the wave of emotions.
THANK YOU for your prayers, I will be updating tonight about the nuerologist and what he has to say avbout this. They are working with our transplant team in cincy and they are getting him ready for a refferal for dysautonomia.
Aiden is pale as pale can be, but his labs are still out of whack, but normal for HIM. Just wanted to tell you all, I know I may be "jinxing" the discharge but I am not a superstitious person, (I say that as I knock on wood).
XOXOXOXOXOXOXO
thank you for all the visitors, it brightens his days, it makes mine go by faster. I just love you all for caring. I don't ever want to be a burden to others, I feel like the debbie downer of friends, but I guess at this point we have weaned out the ones that mind it. Sometimes our life is dramatic and sometimes it is hard to watch and live, but usually it is pretty typical and life is pretty good. And soon hopefully with a new diagnosis will come even more stability and normal life. But heck.. what is normal anyway?
Ps/ I have some hilarious aiden stories to share... stay tuned! and the new joke that is being repeated till my ears bleed is:
What is a cow from the North Pole called?
An ESKIMOO!
(courtesy of natalie!)
Packing her bags,
Lisa
TUESDAY
Tuesday AM
staying one more day. Getting ready to do MRI on his brain, spine, and abdomen. Gee... feels like we just did this. Oh yeah, we did. with Mason. Lord help me, I am loosing my composure. let the freaking out begin. Dr. Cross is calling Cincinnati and getting information. We are also drawing a carnitine level on Aiden, lets see if these two brothers have more in common than just blue eyes, blonde hair, and the most beautiful smiles ever.
Ps/ I am being hounded for the computer, Aiden has discovered the world of Webkins. At least it is something fun to do while he is in the hospital.
KEEP PRAYING!
Lisa (who ate all the chocolate and now her tummy is grumbling and regretting it.)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Monday PM
PM update: well I am in the "shutting down" mode. I will have to update another time, but just wanted to say things are progressing here and I just am dealing. Barely. Today his core body temp rose because he went out in the sun for 20 minutes. It took stripping his clothes off and wetting him to get his temp down. It was down in 30 minutes. This is part of this disorder. You can not regulate your own body temp, hense he doesn't sweat.I am just wiped out. I went into a frenzy/ panic... all I could think about was sepsis and a fever and just panicked. So now I have eaten three chocolate cookies, one hersheys crunch bar, 2 diet cokes, and am eyeing my twizzlers. It helps. I will deal with the consequenses at my next weight watchers weigh in.
Anyway... I am checking out. No pee to collect, only chocolate to eat and little nasty fold out chairs to sleep on. Ahh hospital life sucks,
ps/ I am so totally ordering Pizza for thanksgiving, and Joey better not complain. Period.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
AM update
It is really really looking like he has a diagnosis. Autonomic nervous system disorder. Dysautonomia.
http://www.ndrf.org/
Now we have to find out what the diagnosis under that huge umbrella he has. At the point we know that IV fluids are his first and maybe only line of defense. Over the past two years we have kept about 3 to 4 times the normal amount of fluids in him a day that a child takes. He does that orally with lots of gatoraide. BUT it isn't enough. Even though his electrolytes are perfectly normal and BUN is very low, his body has taking fluid out of his veins and loosing it. (Seriously this is so over my head, I am just attempting to explain this like it was explained to me.) This is somehting the autonomic nervous system does when it malfunctions. So they are talking about doing a port in his chest maybe at some point, and we will do maintence IV fluids at home, indefintly. I am thinking we need to think long and hard about infection risks before something like this would happen, but again it is all premature to say. We will finish the rest of the investigation and then decide. We are still looking for an andrenal tumor with a 24 hour urine, and then we are looking at metabolic disease with certian labs.
THEN we will be heading to one of the centers in the country that have ANSD as a sub specialty. There are only 2 in the whole US. We are meeting with hematology to make sure this isnt' some strange type of bone marrow issue but it is unlikely.
Labs improved with the 24 hours of 1 1/2 maintence fluid plus PO fluids. We will continue IV fluids even though it makes no sense to me, cause he will float away. But this is the consenses amoung ohhh about 6 speicalists so far.
IN the meantime I am finding entertainment in the collection of my child's pee and placing it on ice, for his "24 hour urine". Yes this is what I call a good time. I might try to have a play date where we do this, seriously it can be like a new craze! everyone's doing it I swear! Just don't eat the yellow snow.
Just wanted to say thanks to his vistors, and also say my cell phone is dead so if you want to call and lure me out of my boredom just dial 727-898-7451 room 366 (cheryl this means you lol)
I will update this afternoon with more on the hematology visit.
The pee collector
Lisa
Sunday, November 18, 2007 6:21 PM CST
OK so deja vu?
Aiden is back in the hospital. Again. Same thing. Same exact thing. Same exact labs, same exact symptoms... HECK, same exact nurses and doctor from last week.
we had been home for all of 12 hours and bam back into the hospital. I guess if there is a plus side to this, (just trying to find something positive to keep us sane) is that when we were in cinci they said they had a list of labs that they wanted to run while he was doing his "episodes".. so we at least got all the metabolic labs out of the way. So if this is or isnt' metabolic we will know.
They are also doing the 24 hour urine to test for the adrenal tumor, I guess that is a good thing. I don't know anymore what good things are but I do know that this timing is strange and freaky and that it must be from the Lord. It must be. Afterall he has been perfectly healthy (well not really but kind of healthy) all summer and then he does his deal the days before we are to leave for his big eval in cinci. Then we go up there, get some ideas of what we may be looking at, and then they day he gets home he repeats it exactly. Maybe it is just the only way we will be able to make him better. I just don't know. But I choose faith and I choose to think that this is all for the good of his future. And that is all I want for him... a future.
I am doing ok, Joey is ok, Mason is ok even though he does know something is wrong with his "A.A." Aiden though, it has been hard on him. I am just being honest. I am so used to saying, "well at least Aiden is ok, and he FEELS ok with it all." I can't really say that right now. He did come into the ER tellin the nurses to "just go ahead and give me an IV. Put some zofran in it". yes he actually said ZOFRAN. I will say that I got him some paints and paper and he is painting spongebob right now, and half watching Drake and Josh. About every hour he will mention that he is ready to leave. I understand that.
So tomorrow we will be consulted with hematology, and we will speak with out transplant coordinator in cinci again, and then also do more testing. I am prayin that we find the answers, that he gets some miracle and that we can have our healthy boy back. You know what I mean by healthy, JUST a kid with Biliary Atresiam liver transplant and allergies. That is enough.
Anyway, keep praying, and seriously, while I sit in the hospital I plan on getting the cookbook packages ready to send. If you want to order a cookbook, please email me at
Rolexh@aol.com
God bless and I will update in the morning.
XOXOXOXO
Sunday, November 18, 2007 10:37 AM CST
This is Jen & Jon's mom posting for Lisa. Aiden is back in the hospital at home. Same sort of stuff as last week. Lisa said he feels so bad that he asked for an IV to be put in, poor little guy. Aiden's team in Cincinatti has already been contacted and asked for certain labs to be run that may help with Aiden's diagnosis.
Please join me in saying extra prayers for Aiden and for Lisa & Joey too.
Thursday, November 15, 2007 11:39 PM CST
UPDATE
WE ARE DONE! HEADING HOME! POO POO HOSPITAL! STINKY BUTT HOSPITAL! SEE YA LATER! (from Aiden)
OK so we areheading home it is SO late, Lord knows when we will ever make it to Georgia, but we will. Aiden saw an endocrynologist and the appointment took forever. She was so thorough and was askin every tiny detil about him. Askin about his meds and his steriods and his "spells" as she called them (she was from england and had a lovely little accent). So we talked and talked and talked. It was like sitting with Dr. House from the show on Fox. Well except for the drug addiction, bad attitude, sexisim, and no care for patient life or bedside manner. Ok so it was nothing like that, but she was thorough.
After inviestgaitng the labs and information she felt strongly that it wasn't a blood sugar issues. She then also said after doing a calucation on her handy dandy calculator that since Aiden was taking 3 times the amount of steriods his body would actually make that it isn't actually likely it is an adrenal insufficency. We did get down to one thing though, one possibility. An adrenal tumor. They said they need to check his 24 hour urine and check for some hormone (catecholamines) that is produced with this fancy type of tumor.
http://www.umm.edu/endocrin/adretum.htm
http://www.endocrineweb.com/pheo.html
Basically when they are having a "moment" or spell or whatever you want to call it... they can present like Aiden does. Also it can possibly connect with the anaphyaxises as well.
She said something that was helpful, and almost felt like it was ment to be just some motherly advice: she said, it is a arare diagnosis, but whatever we find with him will be rare. If someone wants to diagnos him with a typical illness that isn't fitting, keep searching. This is a "global" problem, invloving multiple systems. Whatever is going on is complicated, rare, but needs to be exahaustivly searched.
It was an interesting peice of advice. When she told us that it felt like she was saying, you must not let someone give you a simple "migraines" diagnosis. This is all his body goin hay wire. If it is an adrenal tumor she said that the hormones effect the sympathetic nervous system and can look just like this.
So with all of that.. we have bioled down Aiden's diagnosis so far to three possibilites.
1) autnomic nervous system disorder
2) adrenal gland tumor
3) metabolic disorder (although least likely)
Aiden will be followed up soon with new doctors and new things. This will take some time to organize but they are on the ball. I am so tired of this. when I said I want to figure this out... what I really meant was I want it to stop. I just want it to stop and go away. Figureing it out has been hard on us. So hard on him. I feel terrible.
So anyway, we are all exhausted. I have so much more to update with. So much more. Gosh to think this was ALSO our annual liver transplant appointment. Liver transplant? Oh yeah. Forgot about that! (ok not really) Aiden is now offically part of some study about kidneys and DNA and prograf. He has come down on his medication, halleluia! Lots of things happened, not to mention we stayed with the most lovely family ever. They put us up in their home and just hosted us all week. I want to tell you all about them.
but I will later. Once we get the photos uploaded, and I get some good rest. I will have a good update. well you know us, we still had fun even when it wasn't much to have fun about. My favorite was the IV with the two lumen's that looked like a puppet. Aiden and I made a video puppet show with his IV. It is actually 'pee your pants' kind of funny.
So all that later, for now, we have it all narrowed down. We will see what comes of it. Keep praying, and THANK You for all the kind words.
If you want to order a cookbook, they come in TODAY. They are $15.00 each or 14 for 2 or more. the shippin is $2.00 please email me with this information:
Name
Address
how many you want
They will make PERFECT christmas presents for that friend or aunt or teacher!
email is RolexH@aol.com type in the title : Cookbook
THANK YOU. and God bless!
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Previous update
ok so when I say red veiny skin.. this is what I mean. Now I have learned from the team here that this is called vasodialating. the red veiny is his veins swelling trying to keep fluid in his body. and THAT my friends plus 50 cents can by me a can of coke.
anyway.. on to the update
We are almost done. one more big blood draw, one more fancy shamncy ologist and we are out of here. Endocrynology is tomorrow and we have some major labs to run afterwards. I don't know the results of the GFR (kidney functioning test), but since I didn't get a scary phone call about it, I will assume it was ok. Of course do not doubt I will be calling tomorrow just to double check. wink wink.
Ahhh updating. I feel like I am sitting down with a big mug of coffee with some old friends. I guess I sit here thinking about what it would be like if I was home telling my 'peeps' about the new news on Aiden. I would be brave and strong but then after a glass of wine (or more?) I would be a bucket of tears. So here I am with you, the computer screen, a bucket of tears.
I am trying not to get side tracked and just fall out and bawl my eyes out at every venture, but after reading the guestbook, I just am a mess. I want to wake Aiden up right now and tell him about his tball friends signing his guestbook, about the medal that is awaiting him when he gets home, and how the Cubs won their last game... and heck every game, like all the kids do in t ball. He was so heartbroken he couldnt' finish the season, and didn't even know it until it was too late to say goodbye to his buddies. He was a class clown out there, little did they know it is the only class he gets to go to. So a little extra silliness and excitement is just because he is so happy with all the kids.
Anyway, thank you for the nice words, it really helps.
So back to the medical stuff. I think we will be getting a diagnosis soon. We are finishing the week of appointments, but I think we will be gaining a new nephrologist, neurologist and cardiologist. It is all up in the air, and I am afraid to comitt to any diagnosis until we hear it after the final tests, but I will just say... it looks like Aiden has some disorder of the autnomic nervous system. They have some ideas in mind, I didn't ask. They want to do a work up with some specialists, they mentioned vanderbilt, and then california. I am just again, waiting. we have no more time off from work, so it will be just me going if this happens. I am ok with that, since Mason is hard to take along anyway. Poor Joey is just Mason's chair so, that wasnt' much help either. but anyway, we will see. at least they are really interested in him and are thankful for all the history they received.
I told them how shocked I was that they could figure this out, but they were humble and said, when we have the benefit of hindsight we can look very smart. I think they are just humble and I am so thankful for them.
The hematologist thing was kind of weird. I don't know what happened there. I will contact our liver docs and see if we were zapped into another dimension. I was a tad confused when the hematologist said: "wow you need a hematologist". Ummmm... aren't YOU a hematologist? "no I am an immunologist"... so before I droll on and on about how I felt like it was a big waste of time, I will just wait to hear from the liver team first. I think we were just way too numb at that point from the GFR to really give it too much thought.
the GFR sucked. It sucks especially when you have NO veins, and are admitted the week beofre and the one vein you have has blown from an IV and fluids. Yeah that was fun. NOT.
We did see a genetics doc yesterday who was all frothy and foaming at the mouth for ... MASON. She basically looked at Aiden and was unintersted, but then sees mason on the floor playing with a toy and she her eyes sparkeled with excitement (or whatever genetisists feel when they see Mason). She called him "loosy goosy" before she even saw him move. But alas that appointment was a dead end also. Not to mention it was the end of a 12 hour day of testing and appointments. mason was like a drunk person flat on his back under the desk moaning and giggling. Aiden was a total luenatic on the exam table playing with his trains. droppin them, climbing, kicking, acting like a maniac. I think Joey had mentally checked out and was staring at the celing tiles and counting the little tiny dots on them, and I was giving medicaly history and honest to God I totally forgot what child I was at the doctor for, and just told the doctor all of Mason't history.
So needless to say, not only did genetics release us they probably filed our chart away in the "do not call back" slot. We were all just DONE.
Today was a different kind of day, we got to see an allergist. Ahh like an old friend I tell ya. They get me. They get Aiden. They just do. Of course it is always a cordial visit, just "hey howya doin'." I mean really what IS the point of us seeing an allergist? It isnt' like they have some magic pill or something. Allergies are allergies. Aiden has them. There is no cure, so we just deal. Hoepfully grow out of some... But as an added bonus, I did love this doctor. she was lovely. So we will just switch his care over to her. It is easier to have it all in one place. She knows his allergist at Emory and felt that he had done a great job on the meds he perscribed, and she just ordered some more tests. She is checking his blood for an autoantibody and some chronic uticaria panel, I just was pleased as punch because she was just a nice lady on top of being awfully intelligent.
SO that is that... so far. On other fronts, I will say that things actually have been hard on AIden this trip. Last night he laid in bed with me, and cried. It started with him rubbing his eye. Of course I turn a light on and think it is a hive, but then I see some tears.
"I am crying real tears mommy"
"That is ok. Today was hard. let your feelings out."
And then it was a rush. A wave of sadness. He cried and cried and cried. I have never had that happen before. He seemed so old to me. So wise. IN the past I just could distract him, and just try to keep his mind off of things. But now, just telling him, to let his feelings out, was like setting a dam free and watching the river overflow. As I held him in the bed, he asked me the same thing he asked me and Joey all week.
"So am I sick or what? Am I a sick boy?"
"DO you feel sick Aiden?"
"no."
"then you must not be sick."
He is getting older, and his questions are so honest and so raw sometimes. I just want to go home for a change of scenery. One more doctor, one more blood draw, and we are coming home.
Just so you know, in perfect timing too... The cookbooks are arriving TOMORROW. UPS has them and we have them tracked. I just can't wait to see them.
OK my friends. I love you guys. Aiden loves you. Things are ok. They will be ok. As much as I wish this wasn't a part of our life, I am so thankful to God for just blessing us with answers. even if they are answers I am not really liking. Knowing is better than not.
Keep praying. I will update tomorrow with endocrynology appt. That should be interesting I think. God bless you,
Lisa
Tuesday, November 13, 2007 8:31 PM CST
day one
Ok let me preface this by saying, this only LOOKS like the world's longest update. but actually the update part is short, the other stuff I actually did a tad bit of research for any readers that wanted to know the history of why we are trying to "fix" Aiden. I just went to my journal history and picked out some random updates from the past that just spell out how frequent this is for him, and how hard it has been for us. Anyway, there is SO much more I didn't post, but I did post a ton of stuff at the end of this update. I doubt anyone will read it, but whatever, it was validating to myself to do it anyway.
OK so today:
well.. where do I begin. I will just say the day started at the crack of dawn with an abdominal ultrasound. I basically had to hold Aiden down in the beginning.. because if any of you have read this site, you know Aiden hates imaging. ALL imaging. Go figure.. stick a big needle in him and he is ok, but pull out an ex ray or an ultrasound and we have some trouble.
So, after that we rush over to nephrology (kidney) we meet this very very nice doctor who basically shows me this 3 page letter written by our GI. It just tells his story and how we have some suspicions that the kidneys are playing a roll. I have no idea what this three page letter actually says, but I am going with her word on that.
So she just says, "so what brings you to nephrology."
uhhh... I actually have no real answer. I told her I don't know where we belong. I don't know who it techinically should be that follows Aiden and fixes him but something isn't right and there is a blood pressure component and this "dehydraton" component. I told her that it makes NO sense that this child would be dehydrated. BUT clincically he presents with severe dehydration and that his labs reflect a possible bone marrow issues. I just tried to be funny and said, "so either he is YOUR patient.. or hematology. I would rather him be yours." hahah??? ok not funny.
So we go over Aiden symptoms over the past two years. lets review them shall we???
Red "veiny" skin. I call it mottled. but he doesn't get red and veiny when he is cold like most people.. he only is red veiny when he is hot.
High hemaglobin, hematocrit, and redblood cells. Polycythemia.
NO sweating.
High blood pressure.
"syncopes" fainting spells/ passing out
vomitting/diahrea coming on very fast no warning, and then followed by insane CBC labs. cured in 23 hours each time with fluids.
Pale pale pale pale but he has a very very high hemaglobin.
Over heating.
OK there is so much more, but you can read it all in my journal history.
So we are talking and she says, "Umm so have you ever heard of the autonomic nervous system?"
OK freeze.
Yes. yes yes I have! Yees
Yes I have. Aiden's nuerologist suggested this 15 months ago. He suggested that Aiden was having autonomic seizures. I thought it was a really weird thing, but passed the info onto his doctors, they decided to pursue it with other nuerologist, and those nuerologist felt there was nothing nuerological occuring.
So anyway, yes I have heard of it, and I am very interested in why this nephrologist is talking about it. So she goes on to explain that they have one girl that is very similiar to Aiden. She said we just actually recently were able to diagnose her. So it is fresh on the top of my head. But this could explain everything. ALL his symptoms.
yes even.. drum roll the million dollar question. WHY does my kid with super high hemaglobin look so PALE? The answer?: vasodialating. the blood vessles shrink and restricts after it shoots the fluid out of it and it causes for a very pale apearance with high hemaglobin.
no sweating? autonomic...
high blood pressure? autonomic
fainting? autonomic
http://www.merck.com/mmhe/sec06/ch098666/ch098666a.html
the list goes on and on. So SHE thinks he IS dehydrated, and has been severely dehydrated for two years. BUT not do to fluid intake. BUt due to his autonomic nervous system pulling fluid out of his veins and body and placing it in pther spaces.
Ok bla bla so on.. I don't totally get it. BUT let me just tell you the interesting info. THE front line treatment for autnomic nervous system disorders? FLUID. Aiden drinks on average 3 times the amount a normal child is required to drink. He has an INCREDIABLE urge for salt (his body's way of keeping his fluids retained and not lost) . the reason why this year has been so much tamer that last, is because we have been giving him gatoraide every day for breakfast lunch and dinner. with out know it, we may have really staved off some serious problems.
THAT IS ... IF.... he has this diagnosis.
So, we spoke to his liver transplant team, they actually feel very very strongly this is indeed his dignosis. They want us to finish up the rest of the weeks torture ... ummm errr.. I mean testing, and then they will be getting him ready for a nuero/cardio work up. Tilt table and all. Who knows when that will be. They are still trying to diagnose this. But they are also very interested in what hematology has to say.
I honestly am already over it. Ready to run home, and pretend this hasn't happened. What sick kid? I don't know what you mean! No sick kids here! I walk these hospitals, whether it is altanta, or florida, or ohio.. and think, is this really real? Is this our life?
anyway, enough of that, I am depressing myself! It's not THAT bad (snicker snicker snicker) So tomorrow sucks. Labs first thing in the morning, then IV in his arm. Then 20 minutes flat on some radiology table (this will never happen he wouldn't do 8 seconds with out being held down for the dexascan) then 4 more blood draws over the next three hours while the radioactive isatyope fills his kidneys. WHOO HOO....
NOT
OK so anyway, off to go to sleep and then back at it again. PRAY this is going good. It is hard to hear, but it is still goin good.
XOX Lisa
BELOW is a "not so brief" history of Aiden and this weird stuff he does. It is long, but interesting.
Monday, April 17, 2006 11:49 AM CDT
April is National Organ Donation Awareness Month! Please talk to your loved ones about being an organ and tissue donor.
Aiden is very reactive-y to everything. Hivey and red. He really hasn’t stopped itching since his latex reaction. But I don’t think he is reacting to latex. I think he is just flaring from it. I think it spiked his IgE again. SO now he has a billion little antibodies ready to attack anything.
Aiden had one of his ideopathic anaphylaxises friday. I probably should be updating about this when it isn’t so early in the morning and I am less depressed, but who needs details? Lets me just say to those who know me well…(it was like the BBQ potato chip all over again). Basically he went unconsious in the car, “My eyes want to sleep” and when the ambulance showed up I had to leave Baby Mason in the car with a paramedic as the turned the lights on and flipped it to high gear. I swear it was still moving as they were shutting the doors. He was all swollen and his lips were big. He was so upset and scared. I have yet to experience the “fast” drive to the hospital, this was pretty scary for me, so I know he was terrified. Aiden really started to calm down and improve with the next five minutes. By the time we were nestled in a bed in the ER. He was very sleepy. His heartrate was low for his normal, but they kept saying it was the benedryl. He was screaming at the top of his lungs and his HR was in the 70’s.. not typical AT ALL. But 4 hours later when he was setting off the pulse alarm with a 65 pulse, I just wasn’t buying it. Benedryl is something he takes EVERYDAY.. he never is sleepy. He slept a lot of the time. He even laid there and wet him self and never got up. He just wasn’t normal. His blood pressure was lower than normal as well, But it was all in the normal range. Just not normal for what he was going through. So since he wasn’t “sick” we went home after being there for hours. We will be going to Atlanta shortly to see them about this. Really this is just out of hand. There was NO food trigger AT ALL. This was all ideopathic. (fancy word for DON”T HAVE A CLUE). It started days before with hives all over his arms and legs while playing in the sprinkler. He has had hives on his cheeks all day and a rash as well. The transplant team put him on 60mgs of prednisone tapering back down through the week. This is the second time in a month he has been on this dose. If anyone isn’t aware of the side effects of prednisone.. let me just say. EMOTIONAL EMOTIONAL EMOTIONAL.. In the past when he was on such high doses, it was really laughable cause he would be so up and down. But this time he has been just down. After a 2 hour meltdown and crying last night I just was so frusterated FOR him. He just is so emotional. The tears started this morning as his eyes opened when he woke up. Litterally.
So I am just ready for him to be back to normal. Hoping the steriods do the trick this time. And just looking forward to talking to the team and his immunolgist. Things need to be investigated. I am not leaving till they are. I have no idea what exactly I am talking about, but we need to look into this more. Check out his immune system better, run more tests, see WHY this is happening. People don’t just go unconsious from playing in water. People who are on the amount of medication he is on SHOULD NOT be reacting like this. To say the LEAST the kid shouldn’t be having a hive with 60mgs of prednisone. And hiving from what? There is NOTHING in this house. Nothing. UGHHHH
Thursday, May 11, 2006 6:55 AM CDT
UPDATE: shortly after I wrote this early yesterday morning, Aiden had a seizure. (or some nuerological event)He got discharged from the hospital with a "seizure diagnosis". He will be having his MRI and EEG and other tests sooner thasn later. He is fine now. He also has very high red blood cell counts called polycythemia... But to me it explains why he is all red and veiny all the time. Also number one symptom to this is "itchy".... I finally know why. SO I will let you know what this all means asap. Please keep praying that God is revealing enough to make him all better. Thank you so much
Tuesday, May 16, 2006
Aiden's skin has been red and blotchy. He is very itchy. When he sleeps even then, he itches. We are rechecking labs when we do the MRI.. which is still not scheduled. Hopefully the last two draws were a glitch and he looks more normal on paper. Then I think I will feel better. maybe... well actually he woudl need to not be red and itchy and rashy. THEN I would feel great. My mom took him out today and she was shocked at looking at his skin. She was so glad I warned her cause it is so red and veiny and blotchy that she thought he was having an allergic reaction. I told her that it wasn't, that he just looks like that on and off in the day. weird.
Sunday, May 21, 2006 8:30 AM CDT
Things are good here. Aiden hasn't had any more "episodes" seizures" "events" whatever. He has been fine. He does wake up in the morning red and rashy. It comes and goes in the day.
*** gee doesn't this sound like LAST week? May 24th 2007
Little Aiden has been sick. :( I just have a moment to update (he is sitting here reading a book while I am in the library and that will last all of 10 seconds lol)
He has been in and out of the ER since Thursday and finally (and appropriatly) admitted on Saturday night in St. Pete. They discharged the little traveler and we came to Atlanta. We are admitted here and I just learned they will be doing a lot of testing on him. I have to say even though I finally feel heard and listened to... I can't help wish we could just be home playing with Mason and Daddy.
Anyway.. when the doctor said to me this morning.. "I dont' want to overwhelm you will all the things we will be testing for.." I asume it means we will be here at least a few days.
Like I said before transplant patients don't need to be going unconsious for no reason. So hopefully we will get a reason. Now that we aren't out of sight and out of mind suddenly his weird veiny skin (mottled) is getting attention (hello!) and I am certian we will see cardiologist as well as nuerologist.
I think MRI of brain, video 2 day EEG and also echo, ekg and other things are in store.
Wow He is still reading!
Aiden is feeling pretty puny. Really isn't eating. (3 grapes for breakfast). He was actually admitted for "acute renal failure" his creat was so high! But with 36 hours of fluid being soaked into him, he is looking pretty good on that front. They said they will be interested in see what happens when he isn't so "tanked up".
Monday, May 29, 2006 9:07 AM CDT
Tuesday Update:
Well lasb are back.. the kidney and stomach sickness/headache whatever he had is history, but we are now in patient getting him figured out. he will be consulted by all the three grous I mentioned. Cardiology, nuerology, and immunolgy. He had a chest X ray this morning. It was normal. They were looking for an enlarged heart. His hemoglobin is still running pretty high abover normal, It is mainly the H and H that are high and the RBC.
I did find out the bone marrow biopsy is NOT happening, unless one of the three other people who are seeing him thnk so. BUT they are going to do some other whacky things. Blood gas study. (OUCH! blood from artery) Sleep apnea study. Oxygen study. They said he is not getting enough O2 through the system so that is why his hemoglobin is high and all the other things. ALSO that is why his skin looks weird cause his circulation is not great. But they suspect it may be happening in his sleep??
So we have and MRI of his brain tomarrow, he has lots of weird nuerology stuff includnig EEGs (again) and they are gonna try to figure him out.
I do have a very specific prayer request. His veins are already shot. His hands and arms and elbows and everything are bruised and his line that is from Florida is still in, but we may be loosing it. SO pray that the line either stays or at least it can stay till he is under anethesia for the MRI and we can find a better vein there. I am just not looking forward to him having another line put in if he is awake. Poor guy. So pray for good veins and a good line
Thanks so much for all the support! I am just always amazed at so many people who care and want to help. I can't wait to get him home. I am missing my baby sooo much. I just want to kiss my Mason too.
Thanks for the prayers. we love you
Lisa and Aiden
Ps/ Aiden has just fnished a tme out for throwing a wad of play dough in the face of his surgeon. nice.... Real nice. (and if it wasn't enough he figured his aim wasn't perfect enough so he shot him in the face a second time. And he KNEW he was gonna get in trouble but it was worth it!
Uhh ohh... gee does this sound familiar too??
June 2 2006
SO we were leaving to get discharged and he beigns to cry and rub his eyes and tell us his is sick. He continues on by falling asleep on my while the nurse was looking at him. Geesh. They look concerned and say he looks really pale. (uhhh kind of weird for a child who has such a high hemoglobin). So we let him sleep and he woke up crying and said he was sick. He said he was hurting.
Here we sit. I am thinking he is scared to get the IV out, well becuase he just said, "Mommy I don't want to get the straw out. It will hurt" (I am real intuned :D) So I hope he was just pooped from the long week and is just emotional and sleepy. The nurses have already paged the transplant team even though I am hoping he will perk up before the come.
IF he perks up and gets to leave, this is our plan:
Once home we will see a hematologist. They can help us investigate why his hemoglobgin, hematocrit, platelets, RBC are high. (polycythemia) The transplant team said that aiden is just a complex child that doesn't fit in the box. But they had to investigate ALL "in the box" things they could just to make sure there wasn't something big they were missing. (for this I am SO greatful) he came back negative and normal to every test. All except his labs. SO they want the blood docs to get involved, and see if they have any input.
IN the mean time we were planning on being discharged today (papers almost signed) . If we go home, we will go to the Ronald Mcdonald house. Then have a fun day in Atlanta and fly home tomarrow. Stone Mountain and a real steam engine tomarow!( his choice. He wanted to do that vs going home first)
June 2 2006 later that day
Friday, June 2, 2006 3:20 PM CDT
7:00pm update
change of plans. We will stay in the hospital
Note to self: Aiden's doesn't fake it.
He began vommitting again. So far 9 times. Also diahrea. He is SOO pale. Which is so weird cause his labs are sooo high he should be all red with red ruby lips and cheeks. He is not feeling well. Just like last week. So please pray for him. I pray we can get to the bottom of this.
they are about to run some metabolic amino acid tests on him. Nuerology said major long shot. Although the migrane thing is really becoming a big thought. He has NO head ache though. (my kid would be the ONE that has no headche with his migranes.) They said something about abdominal migranes. They are also running electrolytes and labs again. Poor sweetie thought he was done. He was so hysterical when they told him they were going to flush his IV that he kicked the nurse.
The doctor is getting him fluids, and anti emetic? Zofran. I used that in pregnancy, it works.
OK soooo It seems we are here for some more days. Joey is driving up with my little meatball Mason and stay at the RMDH. Aiden is begging for Daddy and I need both of them.
June 4 2006
9:30 AM update:
well they are doing a liver transplant right now, please pray for the families involved. In the mean time we just sit and wait to speak to someone about discharge.
His labs are better (and should be with 2 days of IV fluids) and he feels better as well. Still pale, still puzzling us.
The nuerologist came in a few minutes ago and was in the room for about 1 minute.
"I think there is nothing nuerological going on."
the end.
That was probably at least a $250 consultation. LOL But in the mean time he was totally in agreements with me (us mom's like that) that it was way too soon for the abdominal migraine diagnosis. Puking twice in 8 days doesn't really make sense to diagnose him with a new chronic condition. And I know if these docs give him a label and they won't drop it for the rest of his life.
In anycase I just want out of here! I am tense and snappy and just want to go take the kid to Stone Mountain. Now it seems we will get discharged late this evening just in enough time to not be able to go. Then in the morning we will have to drive back. BUt believe me, we still will go ride that train even if it is the only thing we can do before we leave town
(ps/ the next one just makes me laugh.. haha.. that was one of two normal draws in over 26 months. ONLY TWO!)
Friday, July 14, 2006 10:05 PM CDT
Looong story of the hospital trip will be posted when I can get the steam that keeps billowing out of my ears from blocking my view of the keyboard. Needless to say not pleased with the trip. 'nough said for now.
BUT SOME AMAZING WONDERFUL FABOULOUS NEWS:
My son's labs were NORMAL for the first time in 7 (seven) months. NORMAL
Chew on that for a while ....
NORMAL
Praise God!
(well not ALL numbers were normal... but NO red itchy pale freaky veiny high hemoglobin/hematocrit polycythemia-ish labs! WHOO HOO)
keep checking in.. update soon. and you wouldn't wanna miss this scene from "Days of the Transplant Life"
HUGS!
Proud and Happy/relieved Momma
Lisa
Monday, July 31, 2006 8:23 PM CDT
Hello everyone! (is there anyone out there? hahaha) I swear sometimes I even forget people read this site, I just journal here to vent, or document, or just as therapy.. then suddenly I am at the grocery store and I run into someone I haven't seen in a while, and they are talking about my deep dark secrets.... OH YES! I POST THEM ALL OVER THE INTERNET... AHA! forgot for a moment.
SO anyway, things are pretty calm here still with moments of excitement. Aiden fainted last week, we thought it was surely his glucose, but today's fasting glucose level was 92.. so that wasn't it. Then on Saturday, he woke up.. LITERALLY crawled out of bed with his face HUGE and swollen and red. Like his whole head was one big hive. It was bizarre.. He was digging and itching, so I gave him benedryl, and nothing. It wouldn't go away! I decided after an hour and finding a red rash (keep this fact in the back of your head, it will apear later) that maybe for once it was viral and not allergic. So I called the pediatrician and they told me to come in. (love Saturday office hours). She sat and stared at his swollen nose, (about 2X it's normal size) and red swollen ears which were HOT to the touch, and said, "uhhh he needs a steriod pulse"... SO back on 30mgs of prednisone for 3 days, then 15 for three then back to our normal 7.5 mgs daily. Nice. The face is clear and he is HUNGRY and wild. (haha anyone who has been on steriods gets that joke)
SO now onward to labs today.. they are all up again. Hemoglobin high, hematocrit high, MCH, all these RBCs High high high.. weird weird weird.. but yes the rash is back.. and yes it is a symptom of the high counts. I knew it before labs were drawn, I could just tell. He was red/ veiny and rashy again. And I don't get it.
September 22 2006
Fridays' update below:
"Mommy how do you spell SAD?"
this is what he asked me an hour ago.
Aiden is in the hospital in St. pete (all children's hospital) He woke up ready to take on the world, but then proceeded to projectile vommit, diahrea, and then faint several times. His liver labs are as usual normal, but he is showing infection somewhere his WBC is 19 and he normally runs 4. He also has very very high hemoglobin about 4-5 points above normal range and all his RBC are HIGH. (hmm sound like a broken record??) He is red .... lets all say it together.. VEINY and ITCHY.... this just sucks.
Tomarrow is my precious pride sweet baby Mason's first Birthday and it looks like Liver disease yet again stikes a Hawk Birthday down. Of course the baby could care less, but I am having a pity party.
I better go before my buckets of tears come, better not start now or I may never stop.
Pray for my Big boy. The best big brother in the world. We had big plans again for the weekend, and he is SOO sad things went bad again because he got sick.
Lisa
September 23rd (mason's 1st b day)
Saturday afternoon update:
Hi all, Aiden still has an infection going on. His WBC is lower but still way too high. He is feeling better and is playful and usual. We are noting that he has been having very high blood pressure readings since admission yesterday, and I pray and wonder if God is revealing what we have been begging him to reveal. It seems like nephrology will be consulted this weekend.
Aiden's RBC's and his hemoglobin, hematocrit etc are just way too high. Not budging with ALL the fluid on board and just going up! I am about to stick a needle in his bone marrow myself if I knew how to do the biopsy. (uhh for those who are overzealous at judging my crazy moments... that was a joke ... sort of)
I just want to thank you for the comments in the guestbook. You have lifted our spirits. Even all the way from Canada. XOXO Like karen said, "Maybe we will figure out what Aiden's body has been shouting for us to learn" I hope you are right my friend.
Tuesday, October 3, 2006 7:59 PM CDT
All is normalizing here. well except the
Blood pressure. Egads! Is this for real. Like some Blood pressure button got pushed and suddenly we are dealing with this all the time?! 140/86....138/84... calm child.. quiet child.. (well not quiet in the litteral meaning.. quiet as in not moving a lot.. he IS my child after all and we aren't quiet often) Best readings we are getting have been 118/78 and that was on Sunday. So nephrology called again and upped his norvasc to 2mgs BID oops that was fancy med talk for twice a day. See all the amazing benfits I get from being Aiden's mom? I can talk fancy med talk. BID... I am cool, I know it! They want his BP to be 100/60 - 109/68 SOLID. Stay THERE.. this is just TOO high. So weird we just never dealt with this before.
Wednesday, November 29, 2006 6:08 AM CST
UPDATE: They are admitting him... his pediatrician called me this morning and said she wants him in. IV antibiotics and IV fluids... but mainly to see hem/onc... she wants to do that bone marrow biopsy. We will see what happens though. Anyway, I told him, and he said "THAT is what I said LAST night! I am sick!".... He knows, it is his body.
Anyway... below is the other part of the story. thanks for your prayers, I am sure this is just a quick little deal and hopefully just to be on the safe side since his WBC is so high although they think it is related to the polycythemia at this point.
Well Aiden is sick. It started yesterday with diahrea. I was assuming it was allergic at first but then it kept on coming. He was feeling fine, then later in the afternoon I am noticing how quiet he is while he was watching TV. Yep, he was asleep. His little cheeks were flushed and red, and I felt his head and knew he had a fever. UGH!
So he wakes from his nap (which is a bad sign that he is asleep in the first place) and he starts crying and screaming. Joey come home, and my pediatrician (since it was after hours) wants Aiden to go to the ER get labs run.
Aiden wanted Daddy to go down there, and of course I am sitting there thinking.. NO! pick me ! pick me! but Joey can handle it and I guess he felt I needed to sit and worry from the best vantage point. With a sleeping baby and no noise in the house. ALONE with my thoughts. (what a scary place to be)
Long story short. They did a U/A on him and it was normal. BUT Aiden's labs are terrible again. Hemoglobin is so high. RBCs sky high, (the reason for his bone marrow biopsy is back) all his labs are crazy. WBC is high at 19.79, (nuetrophils are sky sky high 14,900 is his ANC what does THAT mean?), and dang it (insert more offensive word if you care) his kidney (creat only) function is high. Oh man oh man! I talk to Aiden's pediatrician on the phone and she says that she wants to admit him if he doesn't have some explaination for the fever. We get the labs back and after seeing the kidneys are playing a roll in this I guess they decide to send him home, with lab follow up in the morning. This is his thing. He has definitly hit a pattern.
My pediatrician doesn't want Aiden near the hospital unless he would need IV antibiotics or IV fluids and he needed neither as of last night. There is SO much sickness and germs this time of year. So she sent us home. (I kept telling myself.. I trust her.. I trust her.. she is so smart.. but I was scared I will admit) So we are to get repeat labs this morning.
SO last night, Aiden woke up in the middle of the night trying to pee..."but it just goes in and out, it won't come out" This is what he tells me. He goes back to bed after not peeing, and then wakes with another fever and is SO thirsty. Crying real tears for something to drink. We run and give him gatoraide. I will admit, that I was really scared. This has never happened with him. But we gave him some tylenol and he went back to sleep. He is sleeping right now.
I will let you know what labs say this morning. We need to call his nephrologist this morning as well to talk about his creatine being high, his crazy thirst, and the high BP we got too. (I don't understand the thirst thing.. he does this everytime!) Just pray that he feels better when he wakes. Although the bone marrow biopsy is defintly in the future for him now. The repeat of this, including the high wbc is the thing that they were looking for in the first place. All his cell production high high high... and that is weird weird weird.
Tuesday, January 16, 2007 11:30 AM CST
So with all that said, things have been good. Aiden's blood pressure has been peaking but we are managing it well. I think the heat doesn't help when he is so active. The diahrea is a whole nother update (one that i have been avoiding for some time)... it is all kidney related. Basically the kidney doctor said that the body is trying to preserve a normal kidney function by drawing fluid of the GI tract. When this happens he is dehydrated and have diahrea. This explains the low potassium levels, cracked bleeding lips for a year, and even yes the polycythemia is due to dehydration. (it doesn't matter how much he drinks, it is all about renal function) It seems Aiden has a thing called hyper-reninism or something. High amounts of renin which increases the blood pressure too.
THURSDAY, February 7, 2007
Well, Mr. Aiden got his labs yesterday. Can you even stand it? Aiden for the first time since his BIRTH actually skipped a calender month for a blood draw. That means for the entire month of January Aiden didn’t get a poke or a needle, or a prod. (ok so I did do that ladel and the poop thing.. but that doesn’t count). Yes, the great thing about being a tiny bit non compliant when it comes to labs is that he got to skip a month. WHOO hooo.. It was 6 weeks since our last draw. And what is the point of labs really anyway? (dont' answer that seriously) His labs are still ridiculous (or re-dik-LE-lus as Aiden would say). His Hemoglobin and hematocrit HIGH HIGH his RBC HIGH, the MCHC, MPV.. all very very high. And yes.. go figure the kid who nearly was killed by the plastic/ latex garment bag.. his eosinophils are RE-DIK-LE-LUS-LY high.
Eosinophils______ normal 0.0 – 3.3 ________ Aiden’s are 12.1
ABS eos ________ normal 0.0 – 0.2 ________Aiden’s are 1.3
What does this mean to you?? The kid is ALLERGIC. And his bone marrow is still over producing the certain type of cell. The reds, and the eos are closely related according to the hematologist. And yes it is still happening. (infact his labs have not been normal in 14 months.) Good news: We now know that it isn’t caused by a type of mailgnacy (from the bone marrow biopsy) and that it is caused by his medication, so now what do we do with that information? Nada… Nothin… that my friends is why I was late on labs.. because what can I do with the information? It isn’t like anyone is willing to pull him from the meds they suspect is causing it. I am still trying to schedule something in Atlanta, but with little luck. I will keep you informed on that. IN the mean time, pray that the itching stops.. I can’t imagine how much it drives HIM crazy to itch ALL the time, when it makes me nuts just to watch him. I just feel terrible for him!
Thursday, March 22, 2007
"Mommy I have bad news. I am sick"
And with that I see my once skipping boy; pink and normal, turn ghostly white and close his eyes. Aiden passes out. The nurses run over and I grab his blood pressure cuff. After three tries we can't get a reading on him. I pick him up and and put him on the couch and he is awake and pale and sweaty and drowsy. All he could squeak out was "are you going to epipen me?"
They told me to take him to the ER, but I knew we just got labs and that is ALL they would do in the ER. I was kind of glad we JUST minutes before had labs so we could see if it was glucose or what on Earth caused it this time. I told them he has a history of syncope (fainting) and that he just needs to perk up and I will call his pediatrician.
After some Oreos and 7-up Aiden looks fine and has all his color back.
and so on and so on.... till now.
Monday, November 12, 2007 1:49 PM CST
An Ode to Thomas
(Only an essay that can be written due to boredom of a 10 hour car ride.)
I found you little blue train at a garage sale when Aiden was only 1 1/2 years old. I didn't think about the fact you would fit nicely in hospital bags, or that you would be there for falling tears, and an unhindered imagination. I thought, a toy, for cheap... why not? Little did I know.
You were just a single train with some tracks, soon to have many new friends. With every lab draw, and hospitalization your little train brood grew. A movie here and there, helped encourage a tremendous love for you.
There were times where you were lost, and a little three year old cried and begged to find you. There were times where you swam at the beach, and even played in snow.
Over all Thomas you have been loved and played with. 
You even have recruited a little Hawk to love you! 
Thomas, do you remember the time where your friend Toby was lost? Aiden was going under anesthsia and Toby was lost in the room we were waiting in. All the nurses remember Aiden with the sheets on the ground with his elaborate train tracks and knew this was a real emergency. Everyone searched for that brown little train. It was like finding a friend when one of the nurses found it nestled on a window ledge in another room. We figured Aiden has Toby perfectly placed to look out the window to watch the construction on the new hospital. Aiden woke from his procedure calling out for Toby, mommy didn't bother telling Aiden of his adventures.
Of course to a mommy.... the is only one reason I would make an "ode to you"...
This is why
you have brought a smile when there isn't much to smile over
You have been a place for a weary head to rest
SO tell the other trains at the train sheds and depot, to make some room for some new friends. There may be some boo boos this week that only the peep peep of Thomas can fix. 
But don't worry Thomas even though there are many new ones there will always be only one you. His first train.
Monday, November 12, 2007 1:49 PM CST
An Ode to Thomas
(Only an essay that can be written due to boredom of a 10 hour car ride.)
I found you little blue train at a garage sale when Aiden was only 1 1/2 years old. I didn't think about the fact you would fit nicely in hospital bags, or that you would be there for falling tears, and an unhindered imagination. I thought, a toy, for cheap... why not? Little did I know.
You were just a single train with some tracks, soon to have many new friends. With every lab draw, and hospitalization your little train brood grew. A movie here and there, helped encourage a tremendous love for you.
There were times where you were lost, and a little three year old cried and begged to find you. There were times where you swam at the beach, and even played in snow.
Over all Thomas you have been loved and played with.
You even have recruited a little Hawk to love you!
Thomas, do you remember the time where your friend Toby was lost? Aiden was going under anesthsia and Toby was lost in the room we were waiting in. All the nurses remember Aiden with the sheets on the ground with his elaborate train tracks and knew this was a real emergency. Everyone searched for that brown little train. It was like finding a friend when one of the nurses found it nestled on a window ledge in another room. We figured Aiden has Toby perfectly placed to look out the window to watch the construction on the new hospital. Aiden woke from his procedure calling out for Toby, mommy didn't bother telling Aiden of his adventures.
Of course to a mommy.... the is only one reason I would make an "ode to you"...
This is why
you have brought a smile when there isn't much to smile over
You have been a place for a weary head to rest
SO tell the other trains at the train sheds and depot, to make some room for some new friends. There may be some boo boos this week that only the peep peep of Thomas can fix.
But don't worry Thomas even though there are many new ones there will always be only one you. His first train.
Saturday, November 10, 2007 6:42 AM CST
WHOO HOOO Going home! He is going HOME!
Packing bags and heading to Cincinatti. read below with our schedule and please keep praying.
~~~~~
Still in the hospital. READY to leave.
There he is... in his little pose. Leg up, hand behind the head. Still even here he is so darn cute.
So I have a trivia mystery question for you... the winning prize is an honory medical degree by the school of Aiden.
WHY exactly does a child who has a hemoglobin that is FIVE points HIGH out of normal range... LOOK PALE?
Can someone tell me?
Whatever... I don't know.. but I think the anxiety of learnign what is wrong with him is at an all time high because we are about to see his new docs in Cinci. I know they will know. I just have this gut feeling that they will know. This is the plan in Cincinatti
Tuesday 13th
8:00 AM Abdominal Ultrasound with doppler
9:45 AM Dr. Jackson, Nephrology (kidney), clinic appointment
11:30 Dr. Nada Yazigi, Hepatology (liver), clinic appointment
1:45 PM Hearing exam- Audiology
3:00 PM DEXA scan, clinical research
Wednesday 14th
7:45 AM Blood draw
8:30 AM GFR with differential/ nuecler medicine
12:00 PM Dr. Bleesing, Hematology/ oncology clinical appiontment
3:15 PM Dr. Leslie Human Genetics
Thursday 15TH
9:00 AM Allergy/ immunolgy (off main campus clinical appointment)
Friday 16th
9:15 AM Dr. Rutter Endocrynology Clincal appointment
I am assuming SOMEONE on this list will get this figured out. I know they are taking this very seriously and the fanciest Schmaniest doctor: Dr. Bleesing... I just have a good feelign he will get this figured out. He is pretty brilliant, and not to mention the bone marrow transplant doctor that works with the liver transplant children.
Aiden had a very sad afternoon. He was crying for about 2 hours. I just sat and rocked him. He was crying so hard that he would make this lamb sound.. I finally got him giggling when I was asking if he swallowed a lamb. I wanted to cry. I want to cry. He begged and begged everyone who walked into his room.. "PLEASE take the IV out"... and ofcourse the usual... "I want to go home".
Sigh
Sigh
This is hard. I know we have a good life most of the time, but I wish he was NEVER SICK! I am feeling those jealous feelings, I wish wish we just could never be this scared for him. I am scared for him.
Anyway... Hopefully he will come home and we can jump right back into our normal life, normal denial and get our behinds up to cinci and get him fixed.
PLEASE if I ever have asked you to pray.. THIS Is the time. Pray for wisdom for his team.
hugs
Lisa
Friday AM 8:27 PM CST
OK I just have to post this link
http://www.kutv.com/default.aspx?articleID=30199
one of my friends from our liver support group has been enduring a real nightmare. Someone has stolen the identity of her sweet baby with liver cancer/ transplant. Please check out this link... there are some SICKOS in this world. This family is SO precious and little Tanner is an angel from Heaven. we all love this little boy so much and it sickens me that someone would use their pain, struggles, and triumphs for profit and attention.
check out the link above and watch the video they have of it. (get tissues ready)
OK back to us.. and our update
Friday 10:45
Ugh
So he is overhydrated now. Labs are back. He was probably never dehydrated in the first place. This is just the weird stuff he has been doing for 2 years. Even though his BUN reads <1 and all his electrolytes show him being over waterlogged, his RBC and hemoglobin are still very high. His hemaglobin should have a false LOW reading from the over amount of fluids, but because we know his hemoglobing and RBC don't elevated from dehydration, they don't lower with over fluid.
this is all bonemarrow.
his over production of cells (myeloproliferative) causes "sticky blood" this has some symptoms.. and those symptoms are Aiden.
http://www.nlm.nih.gov/medlineplus/ency/article/000589.htm
High blood pressure, red itchy skin, head ahces, nausia, fainting etc. Having him overhydrated helps his symptoms because it DILUTES his blood.. making it less "sticky".
So... we have some issues. I have been only screaming this for 2 years... but whatever I am not bitter. I am just TRYING (and trust me that is hard to do sometimes) to focus on the future and the hope of curing this vs the fact that it has been ignored for so long. (makes my hair tingle just typing that)
So Aiden is weepy this morning, got labs, they missed his magic cream area, so he cried and cried. He didn't get good sleep, and neither did I. But they unhooked the IV fluids because is wayy too waterlogged and suddenly he is perked up and frisky. He loves to have his "freedom". You know as much freedom as a 12x 12 room gives you.
Soooooo.... waiting to hear but I am pretty positive we will stay in. we need to see his labs now that the fluids gave him false readings. Nobody wants to travel with a kid who isn't safe in the car. I am checking with Angel flight, but that leaves out two members of the family (joey and Mason)
Aiden had a mild latex reaction this morning. His eyes are nice and swollen. this view finder toy he won at bingo has latex eye rests... I took some badage scisors and cut the latex off. All is good. (although it doesn't help my big fat denial on latex allergy)
Anyhoo... keep praying.. I will update today later when we know the plan.
Ps/ Aiden and I laughed SO hard at the jokes in the guestbook! he already told the beef jerky one! haha Thank you for all the notes. It means so much
XOXOXOOXXO
Signing out from Club Med
ala All kids Hospital
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thursdaay night update
Hello everyone
So a little excitement here. Aiden is in the hospital admitted at all kids in st. pete. He is in room numer 374. He is doing good now. He is about 8590ormal. Just a little tired. He had a very scary morning. Honestly it feels like a dream... Oh wait that is because I WAS dreaming.. I woke up to him having diahrea. soon it turned into vomitting and not just normal vomitting.. it was back to back, can't catch his breath in between. Then suddenly as if it wasn't all dramatic enough, he slumps over in the yellow chair, and then just slinks out of it and is now on his back in a heap on the floor. Yep, pale, white, eyes rolling in his head. So then I knew OK so we have to make it to the ER, clearly this isn't good. Joey had just left for work, so I packed the kids in the car and dumped Mason at my moms house and on to the hospital we went. Aiden then has more diahrea and vomitting in the car and more crying, and I carry him and his messy pants into the ER. I would have cried at this point, but I was too out of breath, this kid is HEAVY, and that parking lot is way to far away.
So anyway, He is cold and pale, BP is normal, but they need and IV. Aiden is TOTALLY out of it. I am starting to freak out. They actually STICK AN IV IN HIS ARM, and he doesn't even wake up.
He is laying on the bed with his eyes shutting and him trying his very very hardest to open them, slurring, "I am trying to open my eyes. My eyes want to sleep." UGH. more freaking out by me.
I knew labs were back and I was imaging having to argue with the docs that this isn't normal and that they need to take this seriously. Before I can I heard something about the ICU. I am not sure if they ever were going to place him there, but whatever.. I heard the word. or letters, or whatever. So more freaking out by me.
they tell me that he is defintly staying and say, "I don't want him to throw a blood clot."... ahh yes the good ole polycythemia. High Red blood cells. I actually have a warped bet in myhead going on on his exac numbers. I was thinking 15 or so.. but when they said his hemaglobin was 17.1 I about keeled over. You see the normal range here at our hospital is 10 - 12.4 Yep. So 17.1 that is NOT good.
So for all the non medical people out there... let me sum up Aiden and his medical situation:
Aiden is totally whacked out.
Yep.
for my medical cb moms and liver moms...
Aiden is totally whacked out.
double yep.
Who the heck knows what is wrong with this kid. Thank God for this journal. I can at least go back into the history and read about his previous "episodes" and see the similarities. Of course would have been nice if a certian transplant team would have managed to listen to me for umm well uh TWO YEARS!
So here we are. getting ready to leave TOMORROW for cincinatti and Aiden get's admitted. This timing SUCKS. I have to ask myself where is God's plan in all of this. And it comes to me. I have begged and prayed that we find out what is wrong with Aiden. WHY is he sick, why does he pas out? WHY does his labs look like this? SO here we are embarking on the big event. the BIG doctor trip, and this happens. I guess, in some weird way, it is ok. It is better now so they can see him like this, so they can learn from this, so they can heal him. It is better now that we have SO many doctors ready to meet us that this happens so they have fresh labs, fresh notes, and me and this fresh memory to share.
I am just praying and trying to remain faithful that this is all part of that bigger plan to get this boy better. Life is good for him, but it could be better.
I will update in the morning, we are waiting for cultures and more labs. Aiden's WBC was very very high at almost 30,000. I am praying it is lower and we can get this kid hydrated and up to his center.
Thank you for the loving notes in the guestbook. It helps to read them. With out blatently asking for notes.. I will just say.. PLEASE SIGN MY BOOK! I am desperate!! (oh um dear, that was a little forward!) ok just kidding. But anyway, Love and hugs and keep this little cutie in your prayers.
Ps/ He has been telling his new fav joke tonight.. ."what kind of phone does a turtle have?"...."a SHELLphone"
XOXOX
Me and the big boy
Thursday, November 8, 2007 10:47 AM CST
*** Update 2:20PM - This is Lisa's friend Kelly. They have been admitted to room #374 at All Children's Hospital in St. Pete. Aiden is perking up...demanding video games. The doctor knows his labs won't fall into normal range right now so they are just hydrating him and stablizing him so he can safely travel to Cincinatti. They hope he will be discharged by Saturday so they can leave on Sunday. Thank you so much for all of the prayers. Lisa was very scared this morning as everything happened so fast, but in her typical fashion she is functioning amazingly well...at least on the outside. Please continue to lift their whole family up in prayer.
This is Karen(Jen & Jon's mom). Lisa asked me to update on Aiden. Aiden is very sick. He was almost admitted to ICU but went to the floor instead. His Hemoglobin & hematocrit are 17 & 50, way high. WBC is 30,000. He may need a bone marrow biopsy soon. He was puking & had diarrhea and lost consciousness at home. Lisa is concerned that something is going on with his bone marrow. Their pediatrician is paging the team in Cincinatti.
I hope I got all that right. He is just really sick. Just please pray for wisdom for all the doctors involved to figure out this little mystery boy. Lisa, we are praying hard & will be thinking of you all.
Friday, November 2, 2007 6:56 AM CDT
Today marks the first day of the incrediably hectic next few weeks. This morning Myself, Aiden and Mason will leave for Georgia. Monday is Angel Haley's Birthday. Should would have turned 14. Every year Cheryl and Bruce, hold a Birthday Party at the hospital to honor her memory. EACH child in the hospital will recieve a gift. We have crafts for the kids, and snack and drink. A party in memory of an awesome kid.
I wouldn't miss it for the world, even though we are officially NOT patients of Atlanta, there is no hard feelings. (although I can't possibly tell you how amazing the difference has been between Cinci and Atlanta) So Joey's mom will watch Mason, and I will take Aiden up to help celebrate. WE HOPE (me and Aiden) Nick will be able to make it up there, but he is finishing midterms so we will see. Aiden has his fingers and toes crossed!
So we are off to make the 9 hour trip with NO DVD player! My DVD player is BROKEN. But it will be an adventure. Lots of singing Laurie Berkner, and The Wiggles.
Please pop over to Haley's page and offer some prayers, This is as always a tough time for the family. But as usual they have endured with grace and strength that only God can give. They truly are amazing.
So I will be back on Tuesday, only to regroup, and pack again and get ready to go to Cincinatti. I am getting nervous. Just pray for us.
SO Have a wonderful day! I will post pics of ALL of us in our costumes.. as a teaser.. Joey and I dressed as TWINS. Ohhh hahahhaha it was too much!
XOXOX
Lisa
Tuesday, October 30, 2007 7:48 AM CDT
HAPPY HALLOWEEN! (tomorrow)
I just wanted to share with you all the incrediable sucess Aiden's fundraiser had! It was SOOOOO much FUN!! Once I get the photos I will be posting them here! But we raised.. drum roll... ta ta ta ta ta ta ta....
$2450.00 !!!!!!!!!!!!!!!!!!!!!!!!!
Glory to God!!!!!
Besides the fact it was the MOSt fun party I have ever thrown or been too, it was SOO precious and touching. I seriously thought we may raise about $600.00. I NEVER in my wildest dreams imagined this. I am so thankful. THAT along with the pre sales on the cookbooks, will PAY OFF the down payment! ($3190.00) I share these figures with you all because after all YOU are the ones who are so generous to donate.
NOW.. when people write the checks for the cookbooks they can have the option of making it out directly to Aiden's fund. It will be your choice! (American Liver Foundation with the Memo stating AIDEN HAWK)
I just wanted to thank everyone who attended, sent donations, donated food and items, and sent well wishes. It was a wonderful night that I will NEVER forget.
Love to you!
Lisa
Thursday, October 25, 2007 9:13 AM CDT
OK so this is MY website of which I solely own, so therefor I have decided to spend this update doing a shameless brag on Aiden. Just for memories sake, for the sake that this will move to the journal history, and over time I can come back and remember what he did yesterday.
It was a rainy day so one my friends and I decided to take the kids to the indoor play place. Soon after we got there Aiden made friends with another boy, and so Aiden and his best buddy Spencer and this boy ran off to play. Everything seemed fine, Mason was enjoying organizing the play kitchen and learning the mechanics of the motoring system of the toy train, (aka playing quiety and analyszing everything) and Spencer's baby brother was doing his best to keep up with the big boys. Ahhhh time to sit with a girlfriend and just enjoy the kids being at such peace.
Across the room I see the trio (Aiden and his buddys) standing and seems like arguing. Of course I am thinking, I knew this moment of peace wasn't going to last long. And as I am watching them argue I see the new boy shove Spencer down. It was like watching a movie in slow motion. Aiden's eyes watch as his best friend gets shoved and he slowly looses his goofy grin and this new look comes across his face. I see Aiden fuss at the boy and then the boy yell at Spencer again. Aiden took it apon himself to push the boy off of Spencer and yell at him. He reached down to Spencer helped him up and the boys came running to us.
"AIDEN! What happened?? Please tell that boy you are sorry for pushing him." Aiden marches over to the boy (of which I will NOW start calling the Rotten Boy) and apologizes and runs back to us. Spencer is sitting next to his mommy and Aiden sits next to him. Aiden turns to us and says,
"Mommy that boy called Spencer a Dainybutt! And he pushed him down!"
Rotten Boy comes over. "Come on Aiden lets play!" then turns to spencer and says, "YOU are a DAINYBUTT!"
Spencer is nestled up to his mom, obviously Rotten Boy has no problem bullying kids in front of adults. Before we can adress the situation with this child, Aiden... (this is the proud moment.. the piont of this story) scoots very close to Spencer. Puts his arm around his shoulder. Pats Spencer on the leg, and says...
"IF HE is a DAINYBUTT... then I am a dainybutt! I am on the DAINYBUTT TEAM!"
R.B. looks confused. You can tell this is a first. I am assuming his bullying ways usually make other kids laugh, but not this time. He ran into the wrong pair of best friends. "Come on Aiden lets play!"
"No! Spencer is my FRIEND and you called him a DAINYBUTT! I am not playing with you. I am a DAINYBUTT TOO! DAINYBUTTS are COOL." Aiden says with his arm over Spencer's shoulder patting him and hugging on him.
This conversation carried on for about 4 mintutes. Spencer's mommy and I are just sitting there, watching this totally in the midst of this. I am laughing so hard to myself that tears are rollingdown my face. ARE YOU KIDDING ME? Aiden the hero?
There is some things you can teach a child, and somethings that just come natural. This just is Aiden. When he loves you... he loves you forever and more than any kids loves a kid. At five years old, I got to teach Aiden a new word. Integrity. Aiden, YOU have integrity. He just does.
Rewind to when Aiden and Spencer were three years old. We were at the beach. The boys were playing nicely with Spencer's boogy board, when suddenly this TEN year old kid walks up to spencer and takes his boogy board. Three year old Aiden, whom by the way looks like he is two, marches over to this big muscular kid, snatches back that boogy board and hands it back to Spencer. They were to far to hear the word exchange, but it was something like, "DONT take my best friends board!" The 10 year old turns with his tail under between his legs and walks away. ON the shore we just laughed our heads off thinking about how this little boy with the big scar.. the kid who should be the one who gets bullied.. steps in and is the bully stopper. Of course we were also laughing because we kept thinking Aiden was REALLY saying, "No one takes that boogy board from Spencer besides ME"... But in all seriousness, there are just some things you can't teach.
OK so I am his mom. How much do I jump in and save the kids? As a kindergartener he would be exposed to this behavior all day everyday. I am glad that even though he doesn't go to school, and all the homeschool critics say he isn't socialized, he has learned loyalty, compassion and to stand up for his friends. I wish I could take credit for some of that.. but I can't. Aiden just loves loves loves his friend. But it begs me to ask the question... WHY? Why does he love these kids?
Maybe it has something to do with the fact that they taught HIM how to be loyal.
I remember the first time Hannah came to see Aiden in the hospital. It was around his third birthday. I remember him saying, "Give me a blanket so I can hide my IV". It broke my heart. Hannah's mom and I talked about how we can make hannah comfortable with the IVs and machines. When Hannah walked into the hospital room.. there was no IV's at least not to them. They never cared. The played and sat on the bed together and Hannah watched as Aiden got all of his reports run, patiently waiting for nurses to leave so they could get back to being silly.
Last year Aiden had all three of his friends visit him in the hospital. They had brought him goodies and they decided to play hide and seek. I sat there with my friends weeping at the beauty of children. Aiden pulled that massive IV pole all over the room and each friend pretended not to see him. Hide and seek after all is half imagination.
So when some kid shoves and calls his best friend a Dainybutt... It does only come natural for him to Join the dainybutt team. Afterall... All his friends have been on the allergy team with him. All his friends have been on the hospital trip team with him. Afterall, not one friend has ever made fun of his tummy, or called him short, or made fun of him not going to school.
Sometimes I think we all could learn some lessons from five year olds. 
lesson 1 Sometimes you get to ride the bike, and sometimes you get to run behind. Just have fun where ever you are in life
Life Lesson 2 Team work always gets the job done a lot faster. Even if you don't know what the job is.
Life Lesson 3 There is nothing wrong being yourself and expressing your true inner being
Life Lesson 4 sometimes not saying anything when things are tough, is all you need to do. Just be there.
Life Lesson 5 It feels good to really really have a crush on someone.
Life Lesson 6... know a good thing when you have it and keep it going, having a crush for 4 years shows that you are loyal.
Life Lesson 7 ... Family isn't just family, sometimes they are your best friends too.
Life Lesson 8... there is nothing wrong with stopping, taking a break, and staring at the clouds. The world is beautiful we just have to look.
Life Lesson 9... make sure there are people in life that "get" WHO you are.
Finally Life Lesson 10....
Love yourself... we are the way God made us.
Yes sometimes I want to pull my hair out, lock myself into a little room with out kids calling my name ever 2 seconds, but today... Today.. I am just proud of my boy and all that he is becoming along his short journey of life, and I just wanted to share with you.
Blessings,
Lisa
Thursday, October 18, 2007 7:20 PM CDT
UPDATE!
Just got this preview in for the cookbook! This will be what the front cover will look like! I am so excited!
Aiden drew brains and hearts in his and Mason's picture. I think that is why I love this one so much. SO here it is!! This is what will be gracing your kitchen and cookbook collection! Nobody said it wouldn't be unique!
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Yes I know I don't update for two weeks and then BAM two updates in a few days. I am tricky like that. Or Jiggy like that.. or whatever I am. So I got a rather humurous phone call From cincinatti (our new transplant center) and they said that they have an appointment/ appointmentS set up for Aiden.... NEXT WEEK. Well techinically she wasn't telling me she was asking if it would be ok. My reply was... "Do you KNOW we live in FLORIDA?" ok so... now we are trying to November 13th and 14th. It seems there is one of the doctors they want us to consult with that is very difficult to get into. I am not sure who he is.. or she for that matter. I think they said Beesly? or Beninly or something like that. I don't know if they are GI or hematology... but just hearing that they have someone to consult sort of sent a tiny shiver in my spine. Infact the plan is to consult several doctors from several teams. It was explained to me that they want specifically the bone marrow transplant doctors who deal with the liver team, and the GI doctors that specialize in eosinophillic disease to meet with us. I think we will be meeting an endcrinologist which makes it offically a new "ologist" that we haven't seen yet. So it should be really eventful and I am hoping if the slides and pathology showed no scaring in the liver from his rejection episodes, then maybe a med change. At least stopping the cellcept was discussed. That would be great. Less immunsupression sounds heavenly, as long as he doesn't reject.. (duh, that was dumb to say)
So Anyhoo.. Halloween is coming, and I don't know if I am just getting more laid back, or if Aiden is just the worlds most amazing resiliant child or a little of both, but it doesn't seem to be an issue. You know the whole candy, trick or treating deal? Well.. it just is what it is in our home. Aiden is So totally happy with what we have done over the years he is already hitting me up for what great new toy he is getting when he trades his candy in from trick or treating. WOW... ok .. great toy? Last year there was some spider rings, a thomas, and then some pencils and other things. It wasn't a BIG toy. SO I had to explain that the Halloween ghost or whoever it is that brings him the goodies (he totally knows it is me) is on a tight budget and there will be no BIG toy. Seriously, why is it that I can already feel those pre teen years when the kid comes to the parents and says, "Hey mom for Christmas this year, can you just give me cash?" And the wind is knocked out of the mom wearing the antlers and the red and green socks. Of course we aren't there yet, He still thinks rocks and grass and sticks are the greatest toys ever.
I have a confession to make. My child is a horder. You know that disorder where people keep everything and hord it? That is my child. I saw this show on TV once about people who did this, and I saw my child. EVERYTHING has a personality. EVERYTHING is loved. We went to T ball last week and as he was walking to the concession stand he saw a clump of clay. Kind of like a rock... He says in total seriousness..
"Mommy... look at that rock. I want it."
"No, Aiden that is a clump of dirt."
"But MOOOOMMMMMMMMYYYYYYYYYYYY, it will MISS me!"
So he crams the clay in his pocket.
It will MISS him? Yes. EVERYTHING will miss him. Or everything is cute. EVERYTHING has to go to bed with him. EVERY SINGLE stuffed animal that he has ever owned... sleeps in his bed... comes to the couch in the morning... Goes to my room in the afternoon.... even makes it to his grandparents house when they watch him. I try to limit him to just a bag full of stuff... but honestly he wears me down. Please please please... Beary or whaley or Liony or Mousey.. or any thing with a Y at the end will DIE with out Aiden and vice versa.
SO yes, Aiden is indeed a horder. But that is ok. He takes after his Dad, whom when I just cleaned out his closet I found his old baseball pants from college. Seriously. Ummmm... No. I ask him, "Joey can I give those away to salvation army?" and he looks at me like I said I wanted to give away his ARM! I am now begging him to wear them for halloween it would make my DAY (and I promise YOURS too.. cause I will take photos hahaha)
So I am busy cleaning, busy putting the thousand and one stuffed animal children away because tomorrow the Tampa Tribune is coming to my house to take some pictures of Aiden. WOW... he is going to be in the paper. They are doing an article on food allergies, and they asked to photograph him. Sure! No problem! Gives me an excuse to clean.
So we are gearing up for a big day tommorrow, then a big weekend preparing for Aiden's fundraiser for his fundraiser. (the jewelry party for the cookbooks). I am excited and just looking forward to the festivities of the night! (ps/ God again, if you are reading.. NO RAIN..just a small request)
We already got some prepayments for the boy's cookbooks! WHOO HOO! AND I have a fancy shamncy spread sheet that Joey did for me on Excel. (ok yes to computer literate people it isn't fancy nor shamncy... it is just a spread sheet but to me it is sooo cool) I have those who have sent checks in advanced marked in Red as paid. They will be getting the very first shipments of books! Books will be arriving in only few weeks! If anyone is wanting to make a pre order, you don't have to pre pay, just pre order.. please email me at RolexH@aol.com please include your shipping address, email, and how many you want.
Cookbooks are 15$ for one and $28.00 for two (and then multiples of that) A $2.00 shipping cost would be appreciated.
So that is it.. Have a great weekend!
Love, Lisa
Tuesday, October 16, 2007 6:04 AM CDT
Playing at the park yesterday, a little blonde girl in a school uniform approaches Aiden.
(cute girl) "Hi, What's your name?"
(you know who) "Aiden! AIden Joseph Hawk. I have a baby brother his name is Mason Grady Hawk."
(cute girl) "What school do you go to?"
(my child- who is now using a voice that is much deeper than his normally is) "Oh yeah... I am in kindergarten. I am homeschooled".
Little girl smiles and runs off.
Aiden looks at me and I swear he is puffing his chest out. And that deep boy voice is still lingering...
"Hey Mommy, I told that girl I am in homeschool.. but I think she thinks I am in HIGH School. Yeah She thinks I am in high school." And runs off to play with her.
I find it actually hilarious at the complexity of a five year old. One minute he is stomping his feet whinning becuase he doesn't want to leave the play area at the Chick fil A and the next he is acting like a teen age boy. Am I the only one?
ANyway... sorry it has been SO long since I have updated! I am just in shock actually. I wonder if that was a world record for me. Things actually have been rather busy and crazy! More than the usual therapy and playing and homeschool. (homeschool? what's that!) But also added to that we are fundraising for our cookbook! Yes I know that sounds ridiculous. We are fundraising for our fundraiser. But we are! With out sounding obnoxious, lets just say the up front costs of the cookbooks were very very high. So we are working feverishly to pay that off.
So we are having a jewelry party fundraiser at my home on October 27th at 6:30. All proceeds will go to Aiden's fund. And then we are doing some amazing raffles! Including a Vera Bradley Bag set, Brighton Bag, Resturants gift certificate, jewelry and other amazing things! It has been a lot of work, and now I am in the party planning stage. Did I ever mention that I have a tiny home? I mean TINY. Somewhere on our homeowners stuff it says that it is 980 squarefoot.. but I like to say the 1010 square foot. I am not sure where that number came from.. but lets just say it is small. SO we are planning a lot of ladies, and I am praying to God the merciful merciful (hint hint God) that it won't rain. We will be decorating the back with buffet tables and tea lights and I am praying it will be a great night.
It is so weird because this is the first real fundraiser I have done for Aiden since he was transplanted. Yes people have been incrediably generous and have donated to his fund since then, but I have not held a fundraiser in 5 years. I actually don't think I ever held one for him in my life. The ones pre transplant were held by what I like to call "Aiden's Angels". It is weird to go door to door asking for businesses to help support a fundraiser for your child. I was just ABOUT to have myself a tiny pity party but was smacked over the head with one amazing story after the next.
It has been amazing how the people who have donated have touched me. Some tell me of stories of loosing a friend waiting for a liver. Or some have said, "I have liver disease" I know there are no coincidences in life so I just have been BLOWN away at the generosity, kindness, and compassion I have seen.
It reminds me of when we were pre transplant and the ladies from the Chronicle of the Horse gave so much and how it re SHAPED my entire being. I guess it takes sometimes to be down and out, and laying in a heap, to see the many kind hands that will reach out to pull you up.
To be shown this type of graciousness is a gift in itself. Do I wish we never had any of this? Yes. Every single day of my life. every single day of my life. I wish wish wish wish wish wish it never happened. I wish wish wish wish that he was born healthy. That there isn't fears that still exist, that he didn't have this. Oh my gosh.. now that he is 5 I wish it sooo much more. But that is all in vain. There is no wishes that can happen. PLus if wishes were real, I would have to give it Cheryl, so she could have one more moment with Haley. Another wish wish wish wish I have.
But they aren't real, and we are to take what we are given and find the good in it. So here I am, stuffing the feelings of pity I feel and just rejoice in the goodness of others. Don't believe the news folks, it is a scam. There ARE good people out there.. LOTS of them.
Speaking of which... Fatima. Aiden's phlebotomist. Kim and Sue, the Lab techs at All Childrens...Please be reading this.
Thank you for making a day that we dread, now a day where my son skips and runs to. Thank you for teaching him to hold his own tubes, and pull his own turnicate when the blood is finished. Thank you for pretending you were doing his Karate routine, and pitching him pretend balls and catching them. Thank you for asking about his care and worrying about him. Thank you for the ABOVE-anything-you-ever-had-to-do, care.
Labs yesterday were abnormal as usual. 10 out of 19 values completely out of range. The H's and L's that dust on his CBC still make my stomach churn. I hate looking at it. But know that we are at a transplant center that is investigating that really sees the red flags waving furiously.
As I tell people Aiden's story asking for raffle donations to his fundraiser, they usually say... "And he is doing good?" WOW... what a complex question. No there is no cure. No magic button. It is all about perspective. Look at him on paper, I say no. He isn't. Look at him from the eyes of the average mom of a kindergartener who has never stepped foot in a hospital or a surgical room, I would say no he isn't. Look at him from the eyes of a mother who has endured Biliary Atresia I would say, he is doing ok.. not great, not bad.. just ok. But I look at him from the eyes of his mother. ME...The woman who held him while he was on a ventilator. The eyes of a mother who rushed to him as he choked and turned blue from 19 anaphylxises. The eyes of a mother who gives ALL those medications everyday. But also the eyes of the mother who sees him hitting balls at T ball. Running with his friends at the park. Watching him play with his brother and jump on his bed. Oh it is so complicated, but yes.. he is doing good. He is amazing to me. He is my hero. He is the little booger that ruffles my feathers sometimes. He is doing great because today is a good day. I have him. He is with me. He is doing better than good. After all he is a little boy that just told a little girl he was homeschooled.. and "Mommy I think she thinks I am in Highschool"...
SO yeah, I just say to the folks, "yes he is doing good, but please keep praying."
Speaking of which, Aiden went to the dentist, and he had NO cavities. I was pretty excited because often times with immunesupressed kids they have terrible problems with their teeth. I was feeling so prideful (like this was anything other than luck) but like, "yeah you know it.. we brush his teeth all the time, perfectly" and then I was talking to Aiden about his appointment. Infact I was reading him a book about going to the dentist, and I said, "Aiden did they use that to look in your mouth? Did they shine that light in there... " etc etc.. He would reply No. No. No.
Finally I asked Aiden well WHAT DID THEY DO? He just replied, "I cried the whole time so they just brushed my teeth. " Hmmmm.... not sounding too official to me. No x rays. Nothing. So now I see this picture. Aiden screaming his head off like a lunatic (becuase he hates people touching his face) and them saying... "whatever just tell the mom it is fine see her in 6 months." Yeah that is more like it.
So at least now for the next 6 months I can say my son was cavity free. we will see what happens next time. So that is it. That is my update for the week. Rambling like the best of them. But I promise later today I will get the new photos up here. Keep checking in.. and thanks so much for stopping by. Love to you all XOXOXOX
Lisa
Tuesday, October 2, 2007 3:46 PM CDT
Great news.. first step of the many blood tests that were sent out on Mason came back normal! They ordered a broken down chain of his chromosones, searching for some specific disorders they had in mind.. all of which came back normal!!!! Now we wait for the luekodystophy tests, and the ones they sent off to Texas and Philedelphia to come back. I was So relieved to get that call, but honestly I wasn't even expecting it or even thinking about it. It was really just God's grace to allow me to forget about the blood tests that were out there. At this point Mason is just not really on my 'worry radar'. (yes that is something that comes natural for us moms.. 'the worry radar') SO I am thrilled to tell you all the wonderful news about that. I suspect that he will end up having "just" the metabolic issues that can be treated with suppliments and diet.
What does that actually mean?? WHO knows. I assume he won't be the star athlete of his class, but who cares? I bet he won't be the fastest runner in the world, but again who cares? I assume that he will have a different learning technique and different path than others in his grade, but again, who cares? He is sooooo sweet. And tiny and sweet and ohhh so cute. He is so stinking smart to me, even though he doesn't score well on his development technically, I think sometimes.. he seems smarter than ME! Seriously though... his speech.. is amazing! I am soo impressed. He has so many words.. If I was more organized like some other moms, I would count them and be able to really tell you what he says.. but lets just say, yesterday in speech he said, "I want bubbles!!" of course it was baby talk.. but it was 3 words! I am so proud of Mason... seriously how fast can one child possibly develop? I am so proud!
Aiden is doing good.. his exzema is out of control.. but his pediatrician and I agree it is because he has done so good on the lower dose steriods. No boluses in a long time. (again I would tell you how long.. if I was that kind of person, but I can't even remember what happened last week none the less months ago)
We are gearing up to head back to cincinatti next month. I am waiting to hear about when his appointment is. The later in the year.. the COLDER it will be! YAY!!!! I will keep you posted as I am getting more nervous and excited about the appointment.
OK COOKBOOKS! DID you think I forgot?? OK here is the scoop.. we had to pay for them in advanced. This is the cause of the hold up. They are now paid for and will be arriving shortly. BUt JUST in time for Christmas presents! Each cookbook will be full of 600 recipies, cooking tips, baking ideas, and of course some very special donors. The cookbooks will be $15.00 each; or 2 for $28.00. If you are interested in making a pre order please contact me at:
RolexH@aol.com
IN the title please state : Cookbook.. in this include how many you would like to pre order, your adress, name etc... and I will begin making my list.
All profits will be placed into Aiden's transplant fund. I am praying and hoping we have sucess with the books as I know we really need to replenish his transplant fund. But I also know God will provide.
I am also planning on doing a jewelery party/ fundraiser here in St. Pete to help pay for the prepayment of the cookbooks. If you are interested in this fundraisor PLEASE email me. I will be sending out more information on that ASAP.
OK enough of that.. buisness stressful stuff.. let me show you what Aiden has been up to!
It's OUT OF HERE!
SAFE! (well he would be safe if he was about 3 feet to the right haha)
Special time together
Have a great week... Love, The Hawk Family!
Wednesday, September 26, 2007 3:25 PM CDT
Turn up your volume: The song play was written for a transplant center to benefit the transplant camp in Michigan. Listen to the words. It's a wonderful and very touching song about being a transplant recipient.
You can also visit: http://cdbaby.com/cd/campmichitanki
To purchase the MP3 or the CD... all of the money goes to benefit the children at Camp Michitanki! (a camp for children who have undergone an organ transplant)
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Of course hearing this song really just gives me time to reflect and look at the roads we have traveled. Someone out there decided to donate... that person was a hero in my eyes. No matter what terrible circumstance laid around the passing of that tiny baby, they decided to give a second chance to my son.
I may have said it a thousand times.. but please please tell your loved one that you wish to donate your organs if that is your wishes. They are the ones that decide, even if it is on your drivers liscence. Every day 18 people die waiting for their second chance. It breaks my heart, because I know those 18 people. I know their families. They are my friends at support groups, they are the mothers I talk to at the latest hours in the middle of the night beside my child in the hospital. They are the ones who spend their time praying and hoping along side me... that we weren't one of those 18, as I do for them. Please know that it isn't some miracle drug we are looking for.. the miracle drugs have already been discovered! We just need selfless people to make the choice to donate. So more children just like Aiden can also have their second chance.
XOXOXOX
enjoy listening to the music... Update coming soon
XOXOOXX
Friday, September 21, 2007 1:46 PM CDT
The boys are healthy! Both boys on antibiotics and it worked. It seems that Mason will have a healthy birthday after all.
TWO YEARS OLD?? I can't believe it. He is so tiny and so adorable.. I can't believe he is two already. I love my children so much.Both of them are so different but when I look at them, 
I can't think of one and not the other. Most of you have followed Mason from my pregnancy, (the bun in the oven) through his first year and then all through the nightmare of this year. Finding out he has a benign tumor in the middle of his brain was surely the low point of the year, but so much better when we found out we don't have to do anything with it just ignore it. (yeah sometimes that is easier said than done) SO much hard work! The last 8 months of physical therapy... MAson is my hero!
He has worked SO hard to learn to stand, and walk and move forward. He is SO amazing. He could just lie down every day in those therapy sessions screaming but he works. Sits on that darn ball and leans over and builds his muscles. It is work.. not play.. and I am proud of him! I can't believe this year we have had SO many medical tests on Mason and it isn't even over yet. 3 MRI scans 1 CT scan, countless IVs, EEGs, and blood tests.
And HE is my healthy child!!! He finally was approved for SSI and is "offically disabled" with a cerebal palsey diagnosis, but I look at him and think.. that doesn't really fit. Nuerology, nuerosurgery, genetics, three different therapies.. this kid has had a BUSY year! ( not like he is driving himself there lol.. I have been busy too!)
But with all of that, you know what stands out?? HIs stong will. His precious soul. His sweet sign language. Signing that you love me, signing that you want more. 
How he falls and falls and falls again and then stands right up. How it must feel so strange to be off balance and how he just giggles and smiles when he is wobbly. He is RESILIENT and BRAVE and STRONG.... and that is why when I see him .. I can't help but think of his brother.
How did this happen? How did I get so lucky? My eyes are weeping full of tears thinking about how rich these children have made me. To sit and think about their accomplishments and their spirits... I sit in awe. They are my babies but often time my teachers. And my littlest angel will be two years old on Sunday. 
Happy Happy Birthday my little Elmo lover. My little blonde beauty.
Daddys little mini me. Happy Birthday my sweet sweet Mason. So quiet just sitting and watching taking everything in. Happy Happy Birthday Strong spririt and hard worker. Your mommy loves your more than I could ever tell you..
Monday, September 17, 2007 7:12 AM CDT
OF COURSE they both are getting sick this week.. OF COURSE Aiden is crying all night in his bed. (then moved to our bed still wailing at 12:00, 3:00 4:40, and so on... OF COURSE he wakes with a stuffy nose and a low grade fever and "head-wache".... because you know why? Saturday is Mason's birthday party. Sunday he turns two. And yes we have a non refundable deposit down on the party. OF COURSE...
Lets review: Aiden's first birthday, came home from liver transplant. 2nd Birthday was postpone because he was admitted in the hospital, but we managed to do a mommy, daddy and me party. 3rd birthday, admitted in Atlanta had to cancel his first Thomas party. Served cupcakes to the floor. 4th and 5th we finally were out of the hospital PHEW! But then when Mason's first arrived, Aiden got admitted again, so even Mason celebrated 1st birthday in the hospital.
No not to complain actually just for the drama of the post, they were actually PHENOMINAL birthdays. Yeah ok so 2 out of 6 were "normal" but the other four were actually pretty outstanding. Of course being sent home after 4 MONTHS in atlanta for his first birthday, even if he had tubes and was really immune supressed, lets face it.. that is a MIRACLE. Second birthday, it was only a short admittance and he never knew when he dived into his baseball cupcakes that it wasn't his real birthday. I knew, but I was learning to accept that things were a tad different sometimes. Third birthday. OK so this one actually did really wrap around a very critical illness. But even though he was sitting in the hospital for 2 weeks, we had the best birthday guest in the world. And she sang us happy Birthday. Birthday with and Angel
Here is Haley and Aiden on his third birthday. Aiden's wasn't feeling too good. And sweet Haley had just had her brain surgery and that is why her long blonde hair was cut short. But it was a special bond, and a memory I won't forget.
That was pretty phenoninal even though it was a very very bittersweet time. Then there was Aiden's 4th birthday the extravagent Pirate ship party. It was more precious than it would have ever been if we hadn't been through so much, because we were HOME and healthy. Then Mason turns one. I figured this was a no brainer, of course no birthdays in the hospital, but Big brother decided to have a major hypertensive episode and get admitted for a few days. But a dear family friend showed us incrediable compassion and planned a birthday party IN the hospital for Mason. 
Icing, candy, and the whole thing, Just our family, IVs and all. It was a birthday to remember, one where friendship and compassion surrounded us.
OK so seriously the kids JUST have a cold. I promise to not get to dramatic on you, but having them get a tad sick the week of Mason's 2nd birthday really only brings one emotion...You just gotta laugh! It is just the perfect allagory of my time as a mother ..
It wasn't what I hoped for, it wasn't what I expected, but when it finally happened it was much richer... deeper... and full of love and life's lessons. Honestly I am just thankful they HAVE birthday; that they get older.
This weekend I went to an all day scrapbooking Fundraiser for a little Biliary Atresia baby. She is SO cute.I have a good feeling about this little one. Her mommy and Daddy remind me of Joey and I. Both active in their child's care, positive and just smiling through the pain. What a GIFT it is to be able to be 5 year out and be able to not say ANYTHING, just show them Aiden's photo to offer HOPE. I tell this family, in 5 years she will be standing in my shoes, showing off a dancing sweet little healthy child offering HOPE to another family. I pray this is how it goes. And would love if you would pray for baby Savannah too.
It is so weird. Somedays I just don't really ever think about the fact that Aiden was born sick and has endured so much. I usually don't even think about it. The allergies really get us more than anything. But There are times where it comes back and it hits me, like when he isn't feeling well. When he cries of headaches like he did this morning. I can't help it sometimes not to worry a tad. I don't like hospitals, I don't like him getting IVs I don't like seeing him cry. But I guess if I did like those things I would have some serious problems.
(An aside: Speaking of which.. this is totally off topic... but Umm am I THE ONLY ONE who heard that Rosie O'Donnel used to break her bones with a BAT to get attention? EEKS...Not sure if I would have mentioned that in my personal memoir, but Hey.. she is on a roll lately)
SO that is it.. I am suspecting labs again this week, but hoping to avoid it. Hopefully the boys will kick their sniffles by wenesday, although one is in my lap as I type this, and the other laying about 3 feet from me and they both look fine... just cuddly. Aside from the comments from the larger boy, "I gotta stay in bed ALL DAY.. Go get me hot chocolate"... YES MASTER. Yes sir.. anything you request master.. I am your servant....
Ahh Motherhood... We don't get paid anything, it can be awfully messy at times, ok and a lot of tears are spilled.. But NOTHING in the world can beat the feeling when those little monkeys are hugging their momma's neck.
PS/ this Fall T ball is offically starting THIS WEEKEND. Joey is asst coach again and Aiden is on the CUBS! Uniforms come this saturday and we meet our head coach.. Might I mention it is a woman! WHOO HOOO GIRL POWER! You know photos will be coming soon!
I will update if the little colds develop into something more serious. Say a little prayer! LOVE and hugs!
The Hawk Family
Tuesday, September 11, 2007 12:23 AM CDT
Today was Mason's genetics appointment. We made it a family affair, Aiden and Joey went along. Little did I know that infectious disease and genetics SHARED a waiting room. Uhh yeah.. Not the best for immune supressed kids, but oh well. This appointment was different. I mean they took photos of Masons face! Front and side profile. Like a mug shot! That was a true first. I thought I have seen it all. And genetics docs.. they are just so smart. You can tell. Like super smart.
I always feel like I am either giving the wrong information or too much. I made sure I didn't mention the hairy legs (you remember when I did at nuerology? and joey said I had hairy knuckles? yes so I avoided that question.) But I did go out on an embarressment limb and mentioned my concern about Mason's hair. But I did start the sentence like this:
"Doctor, I have a weird comment to make. It is probably because I watch too much TV..."
This was actually really true. It is EXACTLY because I watch too much TV. ONe of my fav shows is called mystery diagnosis. (please don't pyscho-analyze me; I know I am nuts) But one night Joey and I were watching TV and we see this show. There was this little girl. She first off looked JUST like Mason. And then they started to talk about her. It was spooky how much she was like Mason. But they noticed that her hair was brittle and that it broke off. Joey and I were just sort of spooky staring at each other. Mason's hair does this. SO anyway.. it turns out that she has developmental delays, she isn't growing, she is SO much like Mason! They send her for metabolic testing and she has this metabolic issue. Similiar to some of the things we found wrong with Mason's testing. Anyway, they gave her a diagnosis and it was just so similiar to Mason. SO today, I step out on a limb and say to the doctor... can you look at his hair?
She too thought it was brittle and broken. She said also said that they wanted to study his chromosones. They are breaking them down and checking for different doagnosises. They then did the weirdest exam. With a measuring tape they measured his face. ears, eyes, etc. I heard her say "broad nose and tip" and then the other geneticist would scribble. She said, one crease on left hand, two on right all other normal. Bla bla bla.. his whole body. It was weird!
So after that she explained that they wanted to look into lysomes, mitochondria, carntitine, amonia, and alanine. Also Looking into the cells that are in charge of energy in the muscles. It was weird. I mean who knew that if one tiny cell was made wrong that it would make you low toned?
I am often confused about all of this. Mason is weak/ yet he is strong. They gave him a diagnosis/ yet we are still looking for more. He has things wrong in his MRI and his labs, but what does it mean?? So I asked her these questions. I specifically said at one point: "Mason's Nuerologist said he was hypotonic cerebral palsy. Is that his diagnosis?"
She said, "It is his symptom. We want to find out why. We want to find out why he has low tone, delay and especially the changes in the white matter of his brain."
She said if he was a premie she would never look into the lysomes or even worry about his MRI and the white matter stuff she said it would be a PVL and just left that way. But because he was full term and has NO reason to have damage in that part of his brain they want to double check that it isn't something more serious. ALTOUGH the MRI repeated was good news that it hadn't changed. SO who knows. I am not terribly concerned, only mildly concerned. But any discussion of a Leukodystrophy is scary. No matter how unlikely it is.
We talked about Aiden and then Joey decided he would ask the BIG question.
"I know you probably can't answer this now, but do you feel that there is a link to Mason and his problems and Aiden and his?"
She said nope. Two kids, both medically complicated NO genetic reasons why they both have issues. Just what God decided to do. Period. That was what I wanted to hear. We will however follow up and do some metabolic stuff on Aiden if Mason gets a metabolic diagnosis.
SO over all we will know in 4 weeks about the exetensive chromosone testing. But probably pretty soon on all the other ones. I am sure we will get through all of this drama and find out that the original diagnosis I gave him "Cute-precious syndrome" will be the winner. But anyway, we did all the labs and it is over and done with. We may be looking at that two day EEG again, but we will see.
Bla bla bla bla bla bla bla
I am so over it.
There has to be something BIGGER happening. And there is. Mason's stuff isn't worth worrying over until we have a reason to worry. But let me tell you There are sick kids out there that need serious prayers. Take for instance little Jessica. Oh this little girl will melt your heart. She was born with Biliary Atresia like Aiden, but now has developed hodgkins lymphoma. Yes you read that right. It is terrible. These kids who get cancer after transplant, it just seems SO unfair! Liver disease is unfair, cancer is unfair, but then to have it all together?! C'mon! They could use some prayers and maybe pop in and sign their guestbook. Then there is little Shania. She is also maybe facing PTLD (post transplant lymphoma) And has spent a ton of time in and out and in and out of the hospitals. It just stinks. To take the words from another CB mom; this is a suckfest. Sick kids are everywhere. I drive by the hospital and the HUGE new one they are building and I think, SO many rooms. So many children.
I know the people who read my site already are involved. You already care. You get what I am saying. But so many just turn their cheeks and not think about it. I just wanted to challange everyone this week, pay that extra dollar at the grocery store for the miracle children's network. Signup for the Light up the night" walk, for the luekemia and lymphoma society. Go to that little baby's fundraisor like little Savannah's this weekend, or simply say a prayer for these children. There are so many of them. I have two. Whether or not mine are doing great or not, I have two. Both have endured a life time of medical stuff, testing, therapies, and doctors. Take my word it IS a suckfest; and we have it GOOD!
Yes it is one of those updates, you know those rambling ones. It may not be very eloquent, but it IS on my heart. Today I was at the hospital heading towards the elevators and there sitting on my right was the cutest little girl. She was wearing all denim. Little embroidered flowers on her dress and her denim hat covered where she had lost all of her hair. She smiled at us sweetly as we passed by. I smiled back, and felt that ache in my heart.
Sick kids may be rare, but it is still there. It is still there.
SO that was my day. I have a headache. I am so over it. I just am ready for looking and looking for answers to be done. I am thrilled with my two boys. They are amazing. Maybe not so much on paper and according to very very smart doctors, but in person, they are so full of life, normalcy, and just the most beautiful amazing children in the world.
Go hugs your kids today... I am heading to do the same right now.
God bless!
Lisa
Wednesday, September 5, 2007 9:16 AM CDT
Teacher Mommy here… school has officially begun.
We really are having fun. I love this ciricullum It is done so much better than I could have done it because it really is clever. Tracing waves to practice the cursive I. Phonics, class manners, writing skills, Bible, etc. I will say though because we are watching a video based out of Pensacola Christian School and because Aiden's class is full of prodigies I have found myself fast forwarding through some of the video. For instance… When you answer a question you can't just raise your hand. You must raise your hand, Stand to speak, but BUT not just stand to speak, stand BESIDE your chair. Poor little Johnny on the video seems to be a tad like Aiden. Mrs. Behr will use that super sticky sweet molasses voice,
"THANK YOU JOHNNY, I can SEE you are trying to answer Mrs. Behr's question, but you are not standing BESIDE your chair."
Two minutes later…
"Eyes on Mrs. Behr… I can tell Johnny is TRYING to look at Mrs. Behr, but really likes to look at his paper."
Two minutes more…
"OH Johnny I LIKE how you sing that song SO LOUD, but please try to use an inside voice."….
I am basically expecting Mrs. Behr to totally LOSE IT on DVD lesson 45. We will see. And of course, we can't just watch the video. Aiden is SO much like me, I heard him yesterday call from the living room as we were beginning the dvd.
"MOMMY!! Mrs. Behr is wearing a black dress today! And her hair is still really poofy!"
Little does he know that I was in the kitchen and wondering, "what will Mrs. Behr wear today?" Because lets face it… the dvds are tragically boring for me. BUT I have to be there watching because if I leave Aiden with the lesson on his own … lets just say, I usually find him upside down on the couch under all the pillows talking to his trains.
So that is that… The lessons come with art projects, but I humbly admit my art projects are better. Was that humble? Ok whatever. And I really have a passion for science like Aiden does so we are doing science projects as well. Here is our very first science project. 
We discussed how not all liquids are the same. Some are thicker than others. Oil is thicker than water and rises in a glass. We dropped food coloring in the glass and it made tiny explosions of color. Got that one from a kids magazine. Cool idea.
But at any rate school is FUN. Aiden loves it. Next week we are going on our first field trip. My parents will watch Mason and just me and Aiden will be going. I will take photos.
In the mean time we had a terrific time last week at the hospital volunteering for Lifelink! (organ donation procurement agency) 
Aiden was just hilarious. He is SOO shy! … NOT! He was hilarious. I stood in the back ground while Mr Aiden just walked down the halls of the administrative areas of the hospital, "Hello, we are selling (we weren't selling it but he thought we were) Ice-cream and sorbet. I am allergic to ice-cream, but you can have some. We have strawberry, raspberry and flamingo flavors"… we would all laugh our heads off. Of course the flamingo flavor was actually mango, but it was so cute hearing him say flamingo. 
He showed off his scar to everyone. I was pretty shocked since he usually is very shy about it. At one point he was standing with some surgeons and he was slowly pulling his shirt up saying, "It's coming… it's coming… here it is! MY BIG SCAR!"
~~~
Let me interject here if you are reading this and wonder if this is healthy for him. I actually wasn't so sure if we would do this. I really didn't know. Aiden hasn't really ever been a part of any of the stuff we have done talking about organ donation or liver disease. I really gave HIM the choice. I asked him if he wanted to and he said yes. I NEVER asked him to show his tummy or to show his scar. I am not in the business of exploiting my child. I was though SOOO proud of him. I was so proud that he felt comfortable showing people something that at times he was ashamed of. This is HIS BODY. I am proud he is learning to be proud it. But never have I pushed or encouraged him to talk about it or show others. I just wanted to throw that in there, because it I feel like it is worth sharing.
At any rate, one nurse knelt down by Aiden and asked him a few questions. Joey and I never do this. We never just talk about his transplant, we do show him his photos and he loves to look at them, but we try not to make it the number one focus, because he is FIVE. So to hear his answers were precious to me. I just never knew.
Nurse- "Aiden why did you get a liver transplant?"
Aiden- "Because I had a rotten liver"
Nurse- "Wow, how do they do a transplant?"
Aiden- "they take a big knife and cut me open and put a new liver in."
Nurse: "do you feel better now?"
Aiden: "Actually I never felt a thing!"
Nurse: "wow you are so lucky"
Aiden: "I know."
I was so touched by this. First I was so thankful for Haley. Through he music she gave Aiden the words, "I had a rotten liver". I wouldn't have thought of that. It is so simple. It is so true. I was then totally shocked at the whole "they take a big knife and cut me open" thing because we always told him that the scar was from the angel wings when they saved his life. I mean OBVIOUSLY he was gonna figure that out but I was pretty surprised he figured it out and never really mentioned it to us. And third… I am so glad he knows that he is blessed and lucky. I am so glad. If there is one thing I hope to teach Aiden as he grows in this body. As he inevitably spends time getting blood drawn and spending days in hospitals, I hope to teach him that even through that… he is blessed. He is lucky. Just because others do not go through the same things he has, he is still lucky and should be proud and never ashamed.
So his first time volunteering was a total hit. He wanted to go back the next day. I am not sure when I will let him do it again. I want to make sure he has a healthy balance and not spend his childhood doing things that are just about transplant. But we were thankful for that awesome experience and hoped it did indeed show the hospital staff that organ donation isn't just about adults… there are little vibrant happy children that need that gift.
Anyway, that was our week wrapped up into one update. I just wanted to add one more thing… please visit www.miracle4savannah.com if you are local and would like to participate in her fundraiser.
HUGS and love!!
Lisa and her A student Aiden
(prayer request for next week.. Mason's genetics appointment)
Tuesday, August 28, 2007 6:48 AM CDT
Yesterday was Aiden's first day of Kindergarten. My big boy! we had a lot of fun. We went on a "Letter scavenger hunt" looking outside for things that begin with each letter of the alphabet. We made a book out of construction paper and he had to write each word in. We reviewed all of our upper case letters and then did an art project. Today we review lower case, finish the scavenger hunt, and yes again have an art project. Of course Aiden is already begging me to do the number hunt which I have scheduled for Wednesday... "Pleaseeeee can we hunt for numbers?" Like Music to my ears.
If I had a penny for each time I heard, "wow Homeschooling is so hard" or "wow, it takes a special person to do that"... I would be rich. Homeschooling a 16 year old in Calculus might be hard. Homeschooling a 15 year old in chemistry could possibly be hard... Homeschooling Aiden.. is.. not... hard. It is just fun! But I will be glad when his ciricullum comes in. Aiden will be doing the A Beka Academy. www.abekaacademy.org His class room will be on the TV, through a DVD program. He will learn the kid's names in the class, stand and say the pledge, have prayer time, and even do the same exact homework as them. (they send me a HUGE box with everything).
Thursdays are our "kindness day". This thursday Aiden is volunteering with Life-Link (organ donation procurment) to hand out sorbet at the hospital. I guess they have a recipient do this every month, and they called and asked Aiden to do it. Sounds like fun, and I asked him if he wanted to, and he said...
"I always wanted to be a Bolunteer!"
Healthwise, Aiden has done awesome. He has the occassional headache, and his skin doesn't look good, but he has been full of energy. This year has been such an awesome year for his health. I am just so thankful to God that we have not be in the hospital much and that Aiden has stayed so stable. If I just don't look at his crazy labs we are doing great. Life is good.
Mason is still progressing a ton. He walks everywhere now. Usually pooped by the end of the day so he crawls then. But his speech is tremendous. It wasn't 5 months ago when he score at 6-9 months for receptive language. I can't get over how well he has done. That was pretty alarming back then. "mason get me the ball"... Blank stare. Now he is bright and receptive. Like a miracle. He still is mildly delayed where as he doesn't know animals, animal sounds, colors, shapes, or anything like that. He is in a phase that they call imitating... he will do anything if we do it first, but when asked, "what does a cow say" he can't answer that. He knows there is an answer, he waits till we say Moooo and then he usually says GAGAGAGA. Close enough. hahaha The therapist all reasure me that cognitivly he should catch up that he had such a great deficit that now we are just in fast forward to catch back up. I am just floored at the progress he makes already! Plus he is so cute!
So that is the update on the kids, you know the real reason why I have this site. "to keep loved ones informed" so now that I got that out of the way, lets talk about something a tad more serious.
Big Love.
You know the show on polygomy on HBO? Does anyone else love that show like me? Ok WHAT is up with Bill? He is turning into such a slimeball! I swear I watch that show and I am pacing and biting my pillow and just way too into it. Sometimes I am watching and I am totally identifing with Barb (uhh you know the first sisterwife of a polygomist husband?- ok so no idea why I am identifying with her lol but anyway) and I just want to tell Bill ENOUGH! I mean how can they NOT be jealous? And How can Bill possibly be into Nicki? Seriously she needs to go.
OK ok. enough of that .. now I have to wait for another season of Big Love to be able to watch a family on Tv that is way more screwed up than any I have ever met. Ahhh.. I love how we can find function in dysfunction. (Hense why my new favorite show is "Flipping Out" on Bravo channel- love that show too)
IN a few weeks Mason finally goes to the genetics doctors. I am nervous and excited to finally hear what they think about Mason. Excited for the hopes that they say there is nothing genetic or metabolic with mason. Nervous that they will say there is. I know I had already said I would be rich if I had a dime for everytime someone said how hard homeschooling was... but I would like to also add if i had a penny for everytime someone said to me,... "Uhh you aren't having more children are you?" I know the people who ask that don't mean to hurt me or mean it in any other way than just honestly curious. BUt I never really know how to answer. I usually say in a joke or something "No... because you know we would have...." and then fill in the blank with some other weird illness. But my heart doesn't actually feel that way. I would like to tell people, "well actually we saw a genetics doctor and they said, there is NO correlation between my two children. They both were just put here by God and we love them." I would like to say, "That is personal please mind your own beeswax" but I usually go with the sarcastic joke instead.
So seeing the genetics doctor will be great because I CAN tell others offically that Aiden and Mason are just two examples of how NO BODY is perfect. Nothing more than that. And ps/ I love my non perfect boys I think they are amazing and wonderful and if I was blessed with more non perfect children I would be only so lucky... so there.
Well this update might really fall into the hall of fame of babbling. True rambling at it's highest form. It is what I do best. I admit it. So on that note... have a great week! New photos coming soon!
Love Lisa
Monday, August 20, 2007 11:56 AM CDT
Dear Aiden
How can so much time have passed? It feels like yesterday when I first held you. You were so chubby and soft and just perfect to me. And now you are getting ready to start kindergarten, and I can't believe it. I remember when you were so small, and the doctors told us so much bad news. It was worse and worse everytime we talked to them. Mommy and Daddy just wanted you to grow old. We just wanted to see you take your first steps, make your first friends. We hoped you could one day play T ball and learn how to swim. Of course I always tried to never think that far ahead. I told myself, 'Don't have so many dreams, because it would hurt to much if they were crushed.' But I always dreamt and hoped you would go to school.
I always imagined that first day of school. You would be so handsome. You would meet your teacher for the first time, I knew she would be sweet and pretty. I would tell her... "My son is a miracle!" I always imagined seeing you scamper down that hallway to your very first class room, finding your desk, and meeting your new friends. So here we are. Now you are 5 1/2. My dreams are coming true, even if they are exactly how I saw it.
Now instead of me telling a stranger that you are my miracle, I am your teacher. No one has to tell me how precious you are. That you have angels that watch you, that you have fought to live. You may not get to run down that hall and sit next to your newest best friend, but instead you get to cuddle in my arms and get a kiss from me when we are reading and learning new things.
There was a time when you were fed by tubes, where everytime I would look at you I would ache. Just ache for you. Now my heart aches with joy. I ache with laughter. You are my delight. Never will I forget the tears that we shed for you, because it only makes this time a more precious and happy time. I love you my sweet Aiden. I am so proud of you. Thank you for teaching me that dreams can come true. Thank you for being everything I hoped for.
Love, Mommy
Wednesday, August 15, 2007 11:00 AM CDT
Just want to say: THANK YOU for all the entries in my guestbook.. you guys just make me smile. It means a lot.
I'll start with the little one first: Yesterday and today Mason had his 6 month re evaluation for physical therapy. I can't believe it has been 6 months already, although sometimes I feel like I have spent his whole life in therapy.. (Ok so just 1/4 of it.) Anyway it was really great because Mason has met ALL but two of his short-term goals! 
here he is working hard. Back, neck and hand muscles!
how cute is his little butt? "100oy"
He still has to walk with holding the railing up a few small steps, and he still has to kick a ball. (this is not really kicking.. more like letting foot hit the ball softly and it propels forward 3 inches) So we now have NEW goals. She will create new goals to get him to be at his age appropriate level. He is scoring in "scattered in the 12-14 months range". Kind of feels like we haven't gotten very far if you focus on the age thing since he score 6 months ago at 10 months age.. But there is a LOT of developing that takes place in that crucial 1-year-old mark. From crawling to standing, walking, etc.. If you LOOK at Mason he is just doing great! I actually had a HUGE milestone this weekend at Home Depot, a man walked up and said, "Your son is so cute how old is he? Around 2?" I almost kissed the man! I said.. "YES YES he will be two next month!" Before he was upright people always would assume he was 11 months. 12 months. But now I am getting TWO? WHOO HOO..
_ Ok let me add a small note here.. and interject into my own tangent with another tangent. Honestly I know I have ranted and raved about how the strangers at the park, grocery store, etc.. should just keep their opinion to themselves, but now that the opinion is in agreement with my own.. I am all about it! Yes yes it is a double standard, but hey that's life!.. ok back to the story..
So anywhoo… He now has new goals set, of which I have no idea what they are, this is where things will be more detail oriented… this past 6 months I mean it was pretty obvious.. Goal= walk but now it will be more obscure things like, walk with a closer base of support (he legs are wide set apart), jump, weight bear on one leg, etc…So thank you for all the prayers, I know that we are so blessed by them and that he is gonna be just fine! The next time he is due to see a physician is in September where he will be getting genetic testing for metabolic stuff that he tests slightly abnormal with.
On to the other one. Aiden. You know the 5-year-old, that totally skipped his terrible-twos and now thinks it is time to play catch up? Oh yes that would be my son. Aiden has always been a 'black and white' child.. good day/bad day.. Lately I have found, I actually have to give this kid some serious thought cause I think he has outsmarted me! Of course he is my sweet hearted loving Aiden, always hilarious… well you know what? NOT ALWAYS… sometimes lately, it isn't THAT funny. Aiden is a kid. A "cool kid." I just have NO idea where he gets his sarcasm from! (wink wink)
Lately I am finding that I really have to explain to Aiden, 'just because I laugh loudly (with a look of horror on my face) when you say some of the things you say to me, doesn't mean it IS actually FUNNY.' Maybe these are laughs of agony? Well.. Ok it IS funny.. but I gotta step it up. This isn't Last comic standing. This is parenting. SO anyway… When he was 2 yrs old I used to call him Bob Barker, "COME ON DOWN.. THIS IS THE AIDEN JOSEPH HAWK SHOW" and now I am wondering if he is hedging more towards some of the HBO comedy series stuff. Anyhooo… I will keep you updated on this… and ps:
Him: "DID YOU KNOW THAT SPONGEBOB ISN'T REAL???????!!!!!!!"
Me: "Uhhh yes.. I did??"
Him: "Well Good, BECAUSE HE IS JUST AN ACTOR MOMMMY!"
Gotcha buddy.. thanks.. thanks for clearing that up for me. (rolling eyes out of my head)
Or my real favorite: I only post this because I AM an equal opportunity embarrasser (this means I can be the blunt of jokes too.. not just my poor grapefruit saving husband)
Picture it: Joey rubbing my shoulders … Aiden walks in and says the following:
Aiden: "Mommy can I scratch your back too?"
Me: "Uhh sure thanks my sweet." wow what a thoughtful loving precious son.
Aiden: "Uhh Mommy?"
Me: "Yes my darling precious?"
Aiden: "Don't take this the wrong way… but…"
Me: gulp
Aiden: "You really DO have a fat back!"
Uh yes.. this is all true.. and as he tried to console me, my husband is now nearly wetting himself from laughing so hard. Gee… lovely. This is how it has been in my home. 5 years old.. uhhh that was a year no one warned me about. SO I AM WARNING YOU! Hahahaha… ok just kidding. No warning needed… I love it.. . fat-back and all.
~~~~
Back to the update: SO I know so many of you were wondering why I hadn't updated (all the crickets chirp in unison) well, it is because we have been finishing our renovations on our kitchen. We actually started this when I was preggers with Aiden. Of course back then I assumed he would not be living in the hospital for a few years. But instead I have been waiting and waiting to get this finished … but ohh the anticipation (Joey calls this: me nagging him) has caused for even a deeper joy now that it is DONE! It looks SOO pretty… and of course like any good project it had to be way bigger than we expected.. a little wall building turned into a lot more.. But I love it. 
Amazing what you can do with some plywood, beadboard, and paint. SO now my dining room is also Aiden's school room. (basically Aiden's school room only because lets face it the TV trays our are real dining room). But anyway our house is little less than 1000 sq ft. but I love it.
Anyway… Aiden got labs this week, they looks the same as usual. I wasn't too thrilled to see "Atypical Lymphs- high" but I am sure there is some good explanation for that. Probably associated with the polycythemia stuff/ allergy/ immunolgy? Who knows. Aiden's prograf level was 3.6 low, I have no idea why that level just jumps around so much. It does it for every kid. It is a weird drug.
Aiden was awesome at the lab. He is amazing to me. I mean it. I am amazed at him. What an incredible kid. Just jumps in the chair, sticks his arm out, yelps a little and then he is done. Hugging the nurses and just high fiving everyone. He amazes me. I am a wimp. Total wimp. I actually got blood drawn this morning. I asked my friend Karen if it was dorky for me to put EMLA (numbing cream) on my arm for my blood draw in the morning. She simply said. YES. Thanks Karen. I would have done it.. but.. I agree, kind dramatic. But dramatic and blood draws sort of go hand in hand. Yes I am a fainter. Who would have thunk it? I faint with my own blood. Go figure.
So anyhooo… this is the excitement here at the Hawk house. I am waiting to hear about the cookbooks.. Hang in there I can't wait to see one. I am assuming it is all running late. But we will see. I will let you know asap. Have a GREAT week… And hopefully if you are one of those in that terrible heat wave you are staying cool.
Oh and I thought I would end with Mason's latest excitement: Guess brother was getting too much attention
yep those are hives...
don't worry he is crying cause he wants to hold the camera
So anyway... no more hummus for Mason.... 'and the beat goes on.. and the beat goes on.. and on.."
Love
Lisa
Monday, August 6, 2007 12:56 AM CDT
OK so back to PART II to our trip. Obviously it was an eventful trip medically- but it was also a lot of fun to travel across country with the kids. I already have told you about all the "stuff" that comes with being a liver kid/ allergy kid on the road. 
'uhh sir please do not let your children ride on the carts.'
You know coolers full of food and we even bring our own toaster oven on the road with us so we can cook. But it was one of those weird things to have to stop on the road for medicine time... 
12 medications most of which are liquid is like a mini- meal!
And of course the kids got rowdy so we would in frequently pull off to some rest stop and let them "run"
This reminds me of when we drove to Cumberland Virginia for pony finals one year (horse show) and we let the pony's out to excercise and stretch their legs. Kind of the same thing, but no lunge whip needed. (horsey friends get that one)
Of course Mason said.. "lets get this show on the road!" 
Do not fear he wasn't using the right set of keys! (That was later when we let him drive us so Joey and I could get some shut eye. I told you he was advanced!)
But anyway... back to one of the best parts of the trip.. seeing other liver families! (yes we DO like being called that... and yes I do imagine a little family of livers everytime I say it.)
Here is Aiden and Heather... (notice how Aiden is posing lately.. this is the "I am cool" look that him and Nick were perfecting.)
Isn't she a beauty?! Those liver kids have the strong "cute gene"
Here is Marisa, speaking of cute! 
And yet again with the leg.
We had SO much fun. The kids swam at the pool. 
(yes those are the world's largests floaties)
Look how sweet marisa's siblings are... and then there is Aiden. "ME!!!!" (gee not like he isn't my child or anything)
Of course we LOVED meeting them all in person. It is like a real family, even though pediatric liver disease is so rare, we have this bond that just brings us closer. I love these kids. I really do. Sometimes people will say things like, "why don't you step away from the other families, so it isn't so sad"... I just can't. Life has changed, and I am no dummy.. it isn't perfect for anyone. I love these people, they have been there for me and I am there for them. I wouldn't change one tear I shed for them for the joy I feel when they have victories and good health. I feel like it is our duty to not turn our backs on others that are hurting. So because of that, we all have come very close and made some incrediable friendships. Not to mention Aiden's realization that none of his friends have scars so when he sees these kids with scars, he just is so proud.
So after cincinatti we had the fun job of driving for 10 hours to Georgia. Our last pit stop to get home. Of course the kids were thrilled to be at Nana and Babus house, and I was thrilled to be in a real kitchen and not eat any more french fries. (I was feeling like we were getting 'vacation induced scurvy' from the lack of anything not carb)
But anyway, Nanas was a nice little stay. Only one night, but the boys were riding bikes, and playing in the garden and in the sand box.
here is Mason performing his newest "I am so cute" smile. I swear I know he practices this stuff in the mirror.
playing in the sandbox
OK this is a tad much... but even Rolex is enjoying himself.
But you know it was all about them getting it all out of their systems for when they get home and back to 'mommy isn't as fun as a grandma mode'. But hey that is why we have another fun Grandma that lives here!
But there you have it.. that was part II. It was a long trip.. dare I say.. even though we saved several hundred dollars with driving that I will less the likely NEVER do that again? Not that it was TORTURE per say... but ummm... ok yes.. it was torture.
Aiden is headed back to Cincinatti in October. He will be having some extensive testing done, and already meeting with teams of doctors. I am nervous but thankful that we can just schedule it, that he is doing so good that nothing is emergent. We are very lucky.
Mason is doing incrediable!!! I wish I could do a video.. you should see him! He is walking SO much!! He walks about 50f the time now. That doesn't sound like a lot, but if you think about it, that means 50f the time he is mobile, he is ON HIS FEET! I am thrilled. I sit and think to myself, how much we have been through with him, and just how bad it could have been and how lucky we are with him too. Life is really been good to us considering the options.
Well, I will end it there, with the big teaser of " I think we have a dead animal in our home"... yeah.. lovely. All I know is we can't find the smell, and even though I would like to believe in my heart that it is an unlucky lizard or something, I am just in fear that something has died in the attic or in some wall....
OK ok.. I know you will be on baited breath.. waiting to know what type of corpse we find tonight through our search.. but do not fear photos will NOT be taking place. If I can help it.. I won't even be here for that discovery.
So on that lovely note.. have a great week!! And thank you so much for checking in our my boys!
Love Lisa
Friday, August 3, 2007 5:43 AM CDT
As of two nights ago, Aiden has officially switched transplant teams.
I wish I could've slipped that one by and never really made it official. But I know you all would "notice" when I would be saying" We are going to Cincinatti" verses Atlanta. So since I am putting this on the site, I want to let you all understand something about this switch.
Thankfully Aiden's liver is very stable and his allergies, and immune system issues are more on the forefront that his liver is at this time. Cinci has top immunolgists that deal with the stuff that Aiden experiences. It just makes it easier to get all his care 'under one roof'. So we will be switching transplant teams to the Cincinatti team to make it easier for him to have complete care.
I want to say that it is very important that people who read this site know… we love Atlanta. I love Aiden's Dr.'s and I love what they have done for Aiden. I am not mad at them… they are not mad at us. We are leaving with a sad heart. But also knowing it is what is best for Aiden and his medical problems.
Unless you have been in these shoes.. (transplant life) I just don't know if I can possibly tell you what kind of respect and debt I feel for the team that has given life to my child. I have memories of that center and those people, that play like a movie in my head. I can hear the voices of the surgeon and hepatologist as they came out of Aiden's transplant to greet us and let us know that Aiden was on his way to ICU. I can smell the soaps, and the blankets, and the mystery smells of the cafeteria. It has been my home for months at a time. I was pregnant with my Mason, fighting by the side of my Aiden in that center. SO many memories that I will never forget.
You know some moms would read this and think.. why on earth does this woman feel such an affection for a place that would be their worst nightmare. And I have to say, it is a phenomenon that I can't put into words.
That place… was our hope. A hope that our son who was born and then dying… would have a chance to live. That place was a place where tears and pain, turned into gasps of joy when Aiden first opened his eyes after transplant. It is a place that I wish we never have to be or go to… but thank God for because it was our only hope.
Never do I want some new mommy of a sick liver kid to read this site and say… "oh that mom left Atlanta… there must have been something bad happened"… I want people to know, that this is what feel is best for AIDEN. Because of the rare and complicated issues he has.
So today, that is all I am saying on this topic. It is with a sad heart… but with a new hope that we are switching centers. A new hope for a quality of life for Aiden, that is every parent's dream. And most parent's reality. Please pray for us during this time, and lets celebrate that we have been blessed so much in the past with wonderful care, and to the future with more wonderful care for our son.
Love, Lisa
Saturday, July 28, 2007 7:43 AM CDT
I have been trying to get all 324 photos onto my very OLD computer (lets say I had it in college) and for some reason it makes this ugly screaming noise at me. I know all my local friends are rolling their eyes because they all say.. "Of ALL people who need DSL and a new computer..." (yes I have dial up too) I am just waiting for the computer to tell me when it is ready to be put to rest. And I think this week, it has been telling me!
SO, not to delay ANY MORE!! Before I talk about the trip I have the best news about Mason!
We went to see his follow up neurology appt yesterday. With all the information, months in therapy, it seems Mason has himself a diagnosis! Tbey said that the MRI, and the physical findings are consitent with hypotonic Cerebral Palsy. So basicially it was our "best case scenario" a few months ago. This is a good link about Hypotonic CP
Anyway... I was just so happy because we are cancelling the two day EEG!! Mason has been doing awesome. He is taking great steps all over the place. He still tires easily but his gait looks very stable and strong. He also is progressing in his speech tremendously. He says Mama and Dada all day long. "Mamma... dada.. Mama... dada.." I have to admit he is going over on the cute-o-meter.
So this week we see the nuerosurgen, just to have him say the same thing hopefully. And then we will make a plan on how frequent we will watch the lesion on his cerebellum. We will also be seeing the genetics doctor but not till september 11th to discuss the metabolic stuff. The repeat labs were still NOT normal. So maybe there is something to that. BUt for now I am just happy that we don't have any degenerative issues. YAYYY
OK so if that took several paragraphs I think I need to figure out a way to fit this all in... OK lets say:
PART 1 to our trip
I know what you all really want to know.. the Sea monkeys. Lets just say, they sadly had an untimely death. We never got to see them grow old, but Aiden reminded me "Don't worry mommy you can go online and buy more!". We will see.
So bla bla bla.. we drove and drove and then drove more. We finally arrived in TN on Friday to stay at our friend's house, Angel Haley's house . Aiden was just making us NUTS because that is ALL he wanted to do. And once the van door swung open... he was just a blurr. Can I say.. My child is obsessed with Haley's younger sister kendall? And of course he just wants to BE Nick. Nick is "cool". That is all Aiden says. "cool".. I swear Aiden has just been a tiny Nick since we have been back. Like he went to cool camp or something.
Here is Aiden in teenage boot camp:
Learnign how to wash the car. Oh this is extra cool especially when you are 16 and have your first car. 
Sitting cool. 
Finally watching Nick on the trampoline do tripple flips (we BBQed one night that is Joey, Cheryl, Kendall, Luke, and Aiden)
So needless to say, I am pretty much thrilled because Nick is the best kid in the world, and i just would LOVE Aiden to turn out like him. Seriously what 16 year old guy would hang out with a 5 year old and be THAT sweet to him? Love that family.
OK moving on... So Aiden went to teenage bootcamp, and Cheryl and I went BABY SHOPPING! (see her site for details)We had a blast. Of course you know me with my two boys, buying all pink was just so fun! But with someone elses money... it was the BEST!
We had BBQs 
and went to the park,
(ok the worlds most unflattering photo of us.. but were having so much fun)
and just played in the yard. it was just perfect weather. My hair just didn't know what to do! 78 degrees?! NO humidity? Yeah.. it was a NICE break from July in Florida.
At one point we were sitting on the deck outside in the morning and while Bruce was talking, there was this giant Hawk just floating above us. I mean like STANDING STILL.. right above us. That thing was in the air above us for at least minute or so. Just lingering. Cheryl and I think, it would be just like Haley to send a "Hawk" to say Hi to the Hawks. And right above Haley's garden there is the most precious Cardinal and his baby birds. Just feet away from us. I loved just watching him bring little worms to his babys. (I told Aiden if he didn't eat his veggies I was going to bring HIM worms too) But at anyrate, it was special.
We sadly had to leave Cheryls but we knew we were heading to Cincinatti and it was going to be worth the trip. And it was. With out going into too much detail, lets just say we were pleased with everything that came of the visit. 
Here are the boys getting their teeth brushed and ready for the visit with the docs.
Here is Aiden sitting waiting for the doctor to come into the room.
OK let me stop there.. that will be the end of Part one... (this actually means I need to go back and finish resizing the last of the 324 photos for part two) But PArt two will include some awesome photos of our visit with two liver families, as well as more form the trip.
In the mean time, we are so thrilled about Mason. The Hypotonic Cerebral Palsy diagnosis is something that we have been hoping for compared to some of the other things we have been testing and looking for. Aiden also is doing great, and I know that he will be doing even "greater" soon. Life is good.
Keep posted for the rest of the trip!
Off to battle my computer, and resize the rest of the pics
Love Lisa
Monday, July 23, 2007 1:58 PM CDT
Hello from Cincinatti!
Well I don't have a lot of time to go into details (don't fear I will have hour by hour coverage with photos and diarama later) but we just finished leaving the hospital, meeting with a hepatologist on the team as well as a coordinator. The meeting was excellent very informative. They went over protocol and other things they would like to do with Aiden and just really introduced their system to us. We were really blown away. It was pretty impressive.
I just wanted to let you all know that we had a great visit and that we have a plan in place. They also seem to be interested in some of the metabolic information we have on Mason. They have contacted Atlanta and our local docs. I am just trying to stay out of the whole picture other than just be the mom that wants the best for her son. But thankful I am not feeling like I am his care coordinator.
Please keep praying for us. We are planning on making a NON emotional deicision coing up... on a very emotional topic. Thank you so much for your thought and prayers. It has helped us so much over this time.
In a moment we will be meeting two liver friends. The kids are coming over to the hotel to swim in the pool... I can't wait to see little Marisa. I just can't wait, and they should be arriving in moment!!!
We had an incrediable visit with Angel Haley's family as well. I cant' wait to tell you all about that. And oh did I mention driving with the boys across country has been .. uhh well.. interesting! But still a lot of fun.
XOXOXO.. more details later. but just keep us in your thoughts!
Love Lisa
Wednesday, July 18, 2007
NO CHANGES!!! Preliminary RESULTS IN!! No changes in the status of the lesion. The nuerosurgeon will report on the myelin. They did discover both sinuses infected.. but he isn't even sick! LOL.. so we will get some antibiotics for that. (whatever)
BUT ANYWAY... WE ARE SOO HAPPY!! YAYYY YAYYY YAYYYYY No changes no changes.. doing he happy dance!!
WHOO HOOO
XOXOOXX
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Mason is done with his MRI! YAY.. it all went really well. I was so thankful to have my friend Michelle go with me. It just helped so much to have some moral support. (Joey is still saving the grapefruit...)Poor Mason baby had to get three pokes to get that IV started. I felt so bad for him, he just don't understand what is happening. But after that everything else went smoothly. They also drew his carnitine levels again (metabolic).
So tommorrow we are off to cincinatti for Aiden, then when we come back we will have on the 27th Mason's nuerology appointment. Then on the 31st he meets with nueroSURGERY, then on the 2 and the 3rd he has a TWO DAY EEG done on his brain to test his brain activity over a longer period of time. THEN... ok just kidding. Seriously though, I am just ready for this nightmare to be over with already. It is tough to do this with both kids. Emotionally.. it is tough.
So anyhooo..Our pedi will call tommorrow with the unnoffical results of the MRI. I am not nervous about it too much... It is all out of my hands.
Thank you for the prayers! Keep praying:
"NO MORE CHANGES IN THE BRAIN"
"NORMAL SCAN"
God bless!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Monday update:
Super Joey has been saving Florida's citrus. Yes, a lot of people ask me. "what does Joey do for a living?" And everytime I answer, and he is in earshot, he usually bursts out laughing because how grossly wrong I am. But NOW I get to tell you through a link!
http://www.tbo.com/news/money/MGBWK78Y14F.html
Joey is the inspector of the trees looking for dangerous pests that can damage our state's agriculture.. I like to call him "SUPER TREE SAVER" or "Fruit Fly Tamer" or "God's gift to grapefruit". Of course because of the issues with this fruit fly, he had to work 7 days in a row over the weekend etc… Who would have thunk a little fruit fly could cause so much trouble??
SO That is Joey.. my hero. XOXO
Anyhoo… Mason did his Yoga last week. He loved it. Unfortunalty I tried and tried to get some cute photos but I managed to get the same shot about 15 times. The room was dark and they were playing yoga music and I guess my camera flashes unofficially were "distracting"… So.. I only have one to share. 
This week I will get some better ones. Of course I have NO earthly idea how I will even MAKE it to yoga with him. Wednesday Mason has his follow up MRI scheduled. (I am not nervous.. I am not nervous.. I am not nervous. ) To determine if the lesion/ cyst on his cerebellum has grown. Also to check out the myelin changes. If there is more changes in his myelin then he officially has a demyelination.. if it is the same over time then we will assume it is some 'damage' to his brain from unknown causes. (and who cares why!? As long as it isn't worse!) Honestly I am SOOO certain that nothing is worse up there, in his cute little head, that I just can't even fake it. No I am NOT looking forward to the anesthesia, the IV, the test, etc… but I just feel GOOD about the results. Honestly he is just doing so great that it would almost go against his physical symptoms to see more problems up there. But still pray… we always could use prayer.
I learned long ago from Aiden, Look at the child.. not the tests. The tests are just tests.. look at the child. (of course this is easier said than done sometimes). So just looking at Mason I would say.. he is doing really good!
So after his MRI on Wednesday (which is at 1:30) I then have to pack the car for our "vacation" (more on this later). Then have everything ready to leave by the morning because Mason has double therapy (aka Yoga) on thursday. Then we leave town from there to pick up Joey to drive to Georgia for our first leg of the trip. SO that is why I think Yoga won't happen this week… because I know that I am a supreeme procrastinator, and that I will leave it all till Thursday and pack in a mad panic. (like I always do)
Hey listen I have better things to do than pack and be organized.. I have doggie fashion shows to put on!
Yes this is Rolex wearing his "smart glasses" as Aiden calls them. We spent an abnormal amount of time taking photos of rolex like this. Lets just say, Aiden and I were really into the whole "making rolex talk like a smart person game". Ahhh to be a stay-at-home- mom. I SWEAR NO BON BONS and soap operas… just Pjs and dressing up the dog. (all crucial to a child's development right???)
And that segways me into my last topic. Our "vacation". I only "quote" the word vacation because c'mon let's face it, we are driving to a hospital to speak to specialists about Aiden. Not EXACTLY a vacation, but we will make the best of everything we are given. So, Like I said previously we will head to Georgia drop Rolex off with Joey's parents, get a little shut eye and then head up to TN on Friday morning. We will be staying in TN at Angel Haley's home for a few days then heading to Cincinatti! When we are up there we will get to visit some other liver friends (yes this is what we call each other) and then of course meeting with the docs at Cinci. (pray pray pray pray) I am so excited to see Cheryl (I actually have recently hijacked her webpage so you can have double the ramblings if you click her link). I just love them.
Aiden though brings excitement to a whole new level. He has officially been "packed" to see Kendall, Logan and his 'best friend' Nick. He has every single train he owns, sleeping bags, stuffed animals by the door. To make matters even more complicated, Aiden best buddy Spencer got Aiden "Sea Monkeys". :D Oh how can I possibly explain the confusion of why these floating bacteria have yet to become furry monkeys that eat banannas under the water. (did I mention Aiden was literal?) So yes, Aiden wants to bring his Sea Monkey's to "SHOW" Kendall.
A) like Kendall cares
B) Uhh you want to put WHAT in my car?
C) I was hoping they would all have a sudden death while we were out of town.. wink wink ..
SOOO, Aiden starts in on me.. "Mommy.. can we bring Cutie cutie cutie cutie (these are ALL their names) to vacation?"
"No" - me. Not even willing to discuss this.
"Please please please.. I love them. They are my babies"
"No. what if they spill" -me… oh man I have opened a crack into my standing firm.
"Oh No.. I will make sure we won't spill them. Please????"
"No" me. Realizing no more comments neccesary.
2 hours later and he has now worn me down , I am relieved to see Joey… Joey walks into the door. Being a professional 5 year old manipulator he runs to Joey,
"DADDY!! Can bring my Sea Monkeys to vacation?? PLEASE??"
"Yeah sure! They can be our Mascots!" Joey says and then heads to the kitchen.
WHAT? OUR MASCOTS? ARE YOU KIDDING ME? These sea "monkeys" look like bacteria that float in water.. and now Joey tells Aiden (after I have said NO for 3 hours) YES to bringing the gross little worm things on VACATION with us? Is this a joke?
SO no it isn't a joke. They are coming. All the way to Ohio with us. Joey thinks it is funny. And you know what?? You know what I think is funny?
THIS
THAT is funny… Joey, hunny. I know you love to read the site at work.. be sure to show the "guys" at the office your "Breakfast Club look"… I love you baby and just can't WAIT to travel for 16 hours in the car with you, the kids, and now the sea monkeys! XOXOXOX
Check in on Wednesday, I will update about the MRI. God bless! And go hug your kids today!
Monday, July 9, 2007 8:11 AM CDT
It has been HOT here.. I know yes it is florida and it is July.. but I forget every year just how HOT that is. So what do we decide to do as a family? Cram ourselves on Joey's boat, and float our selves in the middle of the reflective water... yeah that will cool us down ... NOT.
We did have fun though! 
Rolex Loves the boat too
Aiden and Joey go out fishing so much while I stay home that I was just shocked over and over at how well Aiden knew the water and what to do. At one point we were in the shallows in a bunch of water grass and I said, "Wow this is a great place to go fishing!" and Aiden replies, "Nah mommy, we will get our hooks tangeled in the grass." Oh of course you will.
I just sat there much of the time watch Joey and Aiden, kind of in awe at the relationship they have formed on the boat. They are such a team out there. It is really neat.. I just sit there and think about 5 years from now Joey and both boys... It just brings me joy.
So anyway... we had a blast baking in the sun.. err umm I mean in our wonderful quality family time. Things have been so good for us. Aiden is doing so well. His labs were about the same, some of the mysteries with the polycythemia (hgh red cell counts) are still there. But even on his high dose steriods his blood pressure remained stable and of course there isn't a hive or red mark anwhere. Mason is trying to talk up a storm. yesterday in church the lady in the nursery asked me "Does he sign? Cause he has been signing to me all morning!" She works with the deaf and she said he was just doing great with all his sign language. I thought that was so neat. I don't care HOW he communicates, I am just so glad he does! He is sort of stuck in the same spot physically but I know that will just take time. The use of his right hand is so much better, it is about 60% of his left hand. He isn't taking but a few steps here and there, (from couch to couch- or mommy to daddy) but you should see his face when he does. He is SO proud! And so are we.
We are planning on driving to Cincinatti next week.. yes.. florida to Ohio. Sounds sort of insane, but it actually saves us about $400+ in airfare, car rental, and we have places we can stay along the way to save on hotel. One of those pit stops will be Angel Haley's family . That will be a lot of fun. The boys travel pretty good in the car. I admit I a tad more adventerous than Joey, I can already see the little gray hairs sprouting everytime we talk about our trip. Hey what is better than a road trip for family bonding? Plus not to mention it takes ALL the stress off of us regarding Aiden's allergies on a plane. You wouldn't believe how many flights still have peanuts on them.
Anyway... So that is the story with us. This week Mason starts Baby Yoga at All Children's... This is one of those.. 'pictures are worth a thousand words' moments I am sure. (Still searching for a head band and leg warmers for him...) Mason's MRI is scheduled for the 18th. And then hopefully nothing exciting will come of that.
Thanks for checking in! And please say a prayer for my dad (the boy's grandpa) he is currently in the hospital for a lung infection - he has COPD. He is in good spirits though.. yesterday during a fever he was having, the nurses asked him: "Tom who is the current president of the United States.. " And he replied.. "Roosevelt! Of course!" Wink wink... I love you dad... XOXO
Love, Lisa
Friday, July 6, 2007 9:51 AM CDT
This is just one of the best days ever!!!!!
Got a call about Aiden's allergy tests. And almost all of them have come down a tad. Most of them have stayed the same; corn went higher; but... but... but... beef the one I have been specifically praying for.. has come from a class 5 to a class 3!!!! Milk... the one that was so high it was a 100 or a class 6 off the charts.. has come down to a class 5.
I can't even tell you in any words what this means to me. There are no words...
We will redraw in a month to see if the high dose steriods have had an effect on the total IgE in his system and thus cause a false result... but I know in my heart that this is his first step to healing.
It is in my prayers every night, every morning when I wake, that this nightmare with his allergies goes away. That he can be a normal child who can play anywhere, go anywhere, eat anything. He wants so bad to go to the baseball games with Daddy, or eat a birthday cake at a friends party. He wants to go to the movie theatres and sit down and eat some popcorn. I pray that he can JUST be a liver transplant kid.. let that be enough.. let us be able to stop with this nightmare and let him have what all the other kids have... at least what feels like a normal life.
I am just on my knees Thanking God that He has given us a glimpse.. a glimpse that it can get better. Jehovah-raffa... God is a healer.
Have a wonderful day... I know we will!
Tuesday, July 3, 2007 11:59 AM CDT
IN theme of the holiday, Aiden on 30mgs (just weaned from 45mg)of prednisone is similiar to having fireworks all day and night in my home. He wakes up from bed SPRINGING into action. He is SO hungry. I just made him a tripple decker "crabby patty" (chicken patty sandwich with 3 pattys on it). He ate it, drank a huge thing of gatoraide and begged me for a 5 layer sandwich. I said no... but sliced him an apple. He ate it all.
Mason has had two excellent days of therapy. Yesterday in PT he wore a new orthotic vest (for his trunk muscles) and he was really amazing in it! Mason is also starting "baby yoga" next week! They have him signed up for a 1 hour yoga session where there is on PT per one child. There are 5 kids in the trial class, it counts as a double session of therapy. So for one month he will get PT three times a week. I hope it just helps him so much! He will have to hold poses to work on stabilty, balance and muscle strength. And don't you worry.. I am not coming in my leotard and leg warmers... this is JUST for the kiddos.
Aiden is getting labs on thursday. Nice to have thursdays off from therapy so we can ...oh go to the same place for other reasons. We will be running the following allergy tests on Aiden.
Latex
millk
soy
beef
pork
wheat
egg white
egg yolk
rice
chicken
turkey
peanuts
treenuts
shellfish
oat
The last time we had him tested all of his allergies had increased and gotten worse EXCEPT wheat. That went down. I am very curious what his levels look like now. It has been since late 2005 since we tested him. His last IgE (antibody in his blood that attacks allergins) was at it's alltime lowest 1200. (normal I think is 5-20) So all of Aiden's allergist/ immuno docs all agreed.. not to keep testing all the time cause it was just not gonna get better in a few months. So it has been over a year and half. I honestly just wanted to do the latex, but his pediatrician and I agreed.. why not do it all in one poke. SO now I am curious and excited.. hoping that all of the time that has past where we have had NO exposures to egg or beef or some of ther other ones that they maybe have improved.
Only one month till the cookbooks are ready for sale! I just can NOT wait! It is really wonderful that so many people have contributed and even after it was closed so many still wanted to get recipes in. (if you are part of that group.. thank you, but we had to max it at 600 cause of cost efficiancy.)I so appreciate the emails and the people who have offered to help sell the cookbooks.
Well everyone have a wonderful Holiday! We are just BBQ-ing. Laying low and hopefully visiting with family. God bless America!
And a BIG Happy Birthday to our sweet little Dale! Happy 1st Birthday little one we love you!
(Aiden and Dale above when he was only a few months old. Aiden was singing to his God brother)
Happy 4th!
Love the Hawk Family!
Saturday, June 30, 2007 7:29 AM CDT
Aiden had a bad allergic reaction yesterday at one of best friend's houses. The best we can figure is it was from the latex on the swimming goggles strap. I am not sure how many of Aiden's allergic reactions have been latex orginated.. but I know in the past year it has been the forerunner.
I have been in serious denial about the latex allergy but I can't anymore. I just have to treat it like milk or peanuts or other things. I looked at the swim mask and said to my friend, "doesn't look like latex".. But when we start to see angry red hives grow all over his ear and cheek, then travel down his chest. I am kicking myself thinking.. even though he has days where latex doesn't SEEM to bother him, and some like this.. I have to just be even more careful.
He was doing ok..we gave him a big fat dose of benedryl immediatly just some awful hives ; but as he was sititng with us on the bed I had him sing his ABC's and it was ABC- breath- DEFG- breath- HIJKL- breath... I asked him the usual questions.. "does your tounge itch.. does it feel like someone is squeezing your chest... does your throat feel tight." and he says yes- but only to the throat question. CRAP! I have no pulse ox on me. I listen to him breath. I hear no wheezing.. we decide to call 911 and let THEM access him. If he is ok.. then fine, good.. great. If not then they are there are we can go.
Once the ambulance got there a lot of the hives have gone and he looked better. He was really scared, and so was I. They put him on the pulse ox it was good 98. They said he sounded pretty clear. Phew. So as we start to give medical history, he BP came back 138/104 and the pulse ox starts to lower. stays at 98 for a few minutes.. then- 97 then-96- then 95- then sits at 94 for several minutes. The paramedic says.. 'I am not comfortable sending him with you to the ER.. we need to go'. Aiden's nose gets stuffy, he coughs once.. and I run inside my friends house to get my stuff to go to All Children's.
Besides the high blood pressure which never normalized even until release he improved more and more. They gave him steriods and we are doing 45mgs for 5 days. Help supress the immune system even more. AFter we left the ER a few house later Aiden fell asleep and woke with more hives and a very stuffy nose. Talk about nerve wracking. In hindsight they should have not let him leave so soon. Aiden was ok.. but we just kept dosing him with benedryl and steriods.
Today he hasn't mentioned one word of it. He has a stuffy nose and some cough.. but that is the classic post anaphylaxis symptoms. He is sweet and cuddly and alert. I am lucky to have him.
The ambulance drivers and paramedics were amazing. They took it apon themselves to later call administration at the fire house to have a tag on our home address. IT sends a note when 'the bell rings" explaining.. "Liver transplant, immune supressed, latex precautions."... They were so smart. They took a white sheet and cut a hole in it for Aiden's head and then wrapped him in it so he wouldn't touch the straps on the ambulance nor anything latex. They also told me to keep a box of latex free gloves at the house so when help arrives I can hand that to them. It was really educational. And I just thank them so much.
You know.. Aiden looks terrific. He is amazing. He acts normal.. he his life isn't normal. You aren't supposed to almost die from goggles, Or dress shops, or lolly pops or popping popcorn in Target, or balloons, or the circus. It isn't normal to pack the type of medications we pack on our vacations. To have an entire BAG dedicated JUST for medications for my child's "normal life." AIden is wonderful and amazing and my joy.. but his life is NOT normal. And you know that is only ok...if we are doing everything we can....
So on July 23rd.. we are flying to Cincinati Childrens medical center. We are sitting down with specialists and we are asking THEM... what would THEY do.. with my son. This trip has been in the works for close to 1 1/2 years. It just so happens that Aiden would have a reaction weeks before hand. It only firms in my mind my goals for Aiden. I want a LONG healthy life.. a Better quality of life. I am his mother.. I have HOPES for my child. Doesn't every mother?! Am I supposed to live by the rules of "Take him home and enjoy what time you may have?" Or and I supposed to go with my gut and "search, seek and find how I can ensure that the time Aiden has will go way beyond his parent's time."
About a year ago I asked for you all to pray for us as we made some big decisions. Some people emailed me, "are you pregnant?" Some people thought we might move.. but the truth was.. it was this. DO I think that Aiden's doctors are wrong? No. Do I think they are bad? No. I think that the stance they take on medicine is a very valid stance. I just want to LEARN more about the centers that are doing different things with the kids who are like Aiden. And take it from me.. there are TONS of kids who are like Aiden. Maybe not this severe.. but honestly.. they are younger. Aiden develops more and more allergies every year.
People say to me.. "wow he is doing great! he is growing out of his allergies".. No.. Joey and I are doing this. We keep him safe. We have figured out the ways to have a good life and to keep him safe. We already know that having him go off with hospital staff who know about his allergies isn't safe..(aka anaphylaxis at transplant camp)..We already know that touching things with allergies on it DOES cause problems. Peope here see it. My friends can tell you, about how when Aiden was playing on his friend's computer how his right hand was covered in hives from touching the mouse. Or when he sits at the table with no shirt on, his chest covers in hives. It is still here. It is still a big deal, and we have to do something.
SO get ready for a new ride with Aiden. I feel like I am "coming out" with the truth. It is time for our second opinion.. and I pray that all the prompting the Lord has done for us. ALl the pushing that God has done in this area is for Aiden to be cured. Please pray along with us.
It is time... time to have a new beginning.. a better one for Aiden. Please pray for him as he is on the high dose steriods. His blood pressure is very high, and the steriods do not help.
Praise God for our wonderful friends here. Thank you Michelle for the sound mind you had yesterday. For your benedryl. Thank you for your benedryl. Thank you for keeping Mason safe when I left. Thank you.
Thank you to my friends who call me when I am sitting in the ER, yet again. I am lucky to have you guys.. Aiden is lucky to have your children.
Thank you to my mom and dad who take Mason no matter what they are doing.. no matter what is happening. I love you guys, I am so thankful for you guys, and just can't say it enough.
Love Lisa
Below is a few article titles on this topic.
1)Allergic disease after pediatric liver transplantation with systemic tacrolimus and cyclosporine a therapy.
Arikan C, Kilic M, Tokat Y, Aydogdu S.
Transplant Proc. 2003 Dec;35(8):3039-41.
PMID: 14697973 [PubMed - indexed for MEDLINE]
From PubMed
2) Tacrolimus and food allergy.
Pacifico L, Frediani T, Simonetti A, Chiesa C, Cucchiara S. Transplantation. 2003 Dec 27;76(12):1778. No Abstract Available. PMID: 14688538 [PubMed - indexed for MEDLINE]
3)Systemic FK506 and post transplant food allergy in children.
Atkins FM. J Pediatr Gastroenterol Nutr. 2003 Oct;37(4):525-6. No Abstract Available.
PMID: 14579850 [PubMed - indexed for MEDLINE]
4).Angioedema in pediatric liver transplant recipients under tacrolimus immunosuppression.
Lykavieris P, Frauger E, Habes D, Bernard O, Debray D.
Transplantation. 2003 Jan 15;75(1):152-55.
PMID: 12544888 [PubMed - indexed for MEDLINE]
From PubMed
5).Food allergy after pediatric organ transplantation with tacrolimus immunosuppression.
Nowak-Wegrzyn AH, Sicherer SH, Conover-Walker MK, Wood RA.
J Allergy Clin Immunol. 2001 Jul;108(1):146-7. No Abstract Available.
PMID: 11447402 [PubMed - indexed for MEDLINE]
6.)Food allergy and tacrolimus.
Inui A, Komatsu H, Fujisawa T, Matsumoto H, Miyagawa Y.
J Pediatr Gastroenterol Nutr. 1999 Mar;28(3):355-6. No Abstract Available.
PMID: 10067752 [PubMed - indexed for MEDLINE]
7.)Life-threatening food allergy in a child treated with FK506.
Lacaille F, Laurent J, Bousquet J.
J Pediatr Gastroenterol Nutr. 1997 Aug;25(2):228-9. No Abstract Available.
PMID: 9252915 [PubMed - indexed for MEDLINE]
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tuesday, June 26, 2007 2:06 PM CDT
We are finally home from wedding number 2 (two weddings in 2 weeks). I can’t say that I am not glad to be home, Traveling with two small children for 9 hour car rides… just isn’t the MOST fun thing to do.
This is the view from the front seat. Often with these two innocent looking faces, send cries out of: “ARE WE THERE YET?? IS THIS the pan handle?! I have to go POTTY! My belly hurts!” or in the even cuter voice of Mason.. “WAAAAAAAA!!!! WAAAAAAAA!!!” and “WAAAA”
So there were mishaps with the camera and I have NO photos of the wedding, Aiden in his tuxedo, or Joey and I all gussied up. Him in tux and me in dress. I DO though have for your veiwing pleasure the toruterous- ahem .. I mean wonderful trip we took to the USS Alabama. An old battle ship from WWII. All those with the XY chromosone fully enjoyed this and “could have stayed all day” but I promise, every woman I walked past on the steaming hot old stinky battleship.. we all had the same expression…
SO here are the boys thrilled to be at the battleship and aviation museum.
here is Aiden going to the next level deeper in the battle ship. It was pretty amazing that so many men were on this ship together fighting for our country.
Here are the little ones sitting on the battle ship.
And here is Joey and the boys climbing into the submarine they had there. I admit that was pretty cool.
So after that we really didn’t have any time to “vacation.” The wedding took up a lot of the rest of the trip. Aiden informed us that since he was already a ring bearer “You don’t have to worry about me.. I know what I am doing.” And he did. His little counterpart (cousin Paris) was shy and nervous so Aiden was sure to “take her under his wing.” Show her the ropes of the wedding circuit.
At one point at the rehearsal we were lined up in the back ready for our practice and I could see Paris trying to hold Aiden’s hand. Aiden pulls back and says, “WAIT.. do you have any cheese on your hands?” Everyone thought.. oh how funny- what a weird kid… but Joey and I looked at each other and smiled thinking.. Alright AIDEN! I was really proud.
The wedding part went off with our a hitch.. Little cousin Paris the flower girl was like a professional flower petal distributor! That little girl had every petal placed on the aisle perfectly. In order to do this she had to walk VERY VERY slow up the aisle… this was not working for Aiden, who still thought he was “showing her the ropes” so as they proceeded down the aisle Aiden loudly tells Paris, “JUST TOSS THEM IN THE AIR!” Everyone got a little giggle out of that, but I could tell Aiden was all business.
It was so good to see family we don’t often see. Everyone passed little Mason around and he just loved it. Thanks so much to Suzy, the girls, Daune and Vann for helping us.
Aiden is all about weddings and marriage. A few people asked him if he was going to marry Paris (the flower girl) and he said emphatically that his girlfriend Hannah was the only one for him. Yes young love sounds pretty ridiculous at five.. but when you find out the requirements you will see it has nothing to do with “love” but rather… who can dive to the bottom of the pool; who tells the funniest jokes; who has the coolest toys; and most of all… who is nice to him. And that is all Florida Hannah wrapped up in one.
This week we have our first week of the new therapy schedule… No more Thursdays we are doubling up on Wednesday! So that means 6 therapy sessions in 3 days. Still better than 5 days a week.
I am waiting to hear back on Mason’s MRI, and genetics counseling. (seriously are those people ever in the office?!) Aiden is due for labs next week. And The cookbook stuff is being over-nighted to the cookbook publishers.
I am SOO excited to see the cookbook in person. It will be amazing and delicious. We decided to go with a custom cover, and Aiden drew a rather hilarious version of him and his brother holding hands. No sneak previews yet! I will show you the final result very soon. Cookbooks should be ready in August!
If you didn’t get your recipes in the cookbook.. don’t sweat it.. You can always buy one or two or three! ? They will make great gifts, and take it from me, the recipes are AMAZING! ALL 600 of them!!! Also anyone who wants to help… please start asking around to friends who own businesses and people who know contacts if they would be interested in helping sell the cookbooks.
For family in Georgia, (or some of the people who volunteered) I will be sending some big boxes of the cookbooks out to you as my distributors so there won’t be a shipping fee for your local people. I am so thankful for all the hard work put into the cookbook (especially PEGGY). I am so very proud of it, and just looking forward to seeing the finished copy!!!
Have a wonderful week!! Lots of love!
Lisa, Joey, Aiden and Mason Hawk
WED June 20, 2007 6:49 AM CDT
OK we are back from Mason's appt. Preparing for the worst.. actually was a good method this time.. cause everything he said.. wasn't so bad!
1) move MRI to the beginning of next month. check for change in the white matter/ myelin
2) Re draw the carnitine levels and the organic acids (metabolic disorders) SO we can check to see if that is his diagnosis or just a secondary deficiancy.
3) Get an ambularoty EEG done.. this is a 2 day EEG where they hook him up to the monitors and we can stay at home. then bring the computer thing back and they can see how his brain waves look over a longer period.
4) Take a closer look at AIDEN and his unusual symptoms (vommitting, fainting, dizzyness, etc) There may be a link to the metabolic issues.
So basically it was good cause he didn't say.. "THIS IS HIS DIAGNOSIS" and he wasn't really freaking out about the metabolic stuff.. although he said it was more than likely he will have to be monitored and supplimented for this carnitine deficiancy.
He also just gave us some excellent advice. He said, "be patient".. Mason isn't "typical" He isn't a perfectly normal toddler... So don't compare him. Don't torture yourself trying to make him JUST like the other 21 month old kids. Patience.. patience..
It took Mason almost 1 year to learn to take some steps.. it may take him another 6 months to really walk on his own. It has nothing to DO with walking. It has to do with development. It is all in Mason's timing. It isn't because I haven't "worked hard enough".. it isn't because he is "lazy"... It isn't because he just "gets around faster when he crawls" It is because something is wrong with him. So DON'T COMPARE HIM.
(this is coming from our neurologist whom is also a father of a child with severe neurological issues)
I think he was thrilled to see that Mason's cognitive development was really expanding so much. I know I am! And he was interested in reveiwing Aiden's charts and medical history to see if there was a link between the two children.
So the plan is above... more labs, more medical testing.. more therapy...but so far no scary awful diagnosis. And that to ME is a Great day.
Love you all.. thank you for praying.. I know the Prayers are being Heard!
Now off to finish packing.XOXOXOXOX
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
You know when it rains it pours? This week we are planning on leaving town for Joey's youngest brother's wedding. (ok I surely hope all home invaders are not reading that- cause we have nothing to invade) And what would you know? Aiden is getting sick. Two eye infections, ear infection, and this morning a lovely cough to go with that. He is already on antibiotics so hopefully this won't turn into some type of Aiden-getting-admitted-while-out-of-town-disaster, cause we aren't exactly heading to a metroloplis.
Mason on the other hand is perfectly healthy. But I see him more like a clean canvis ready for anything...
-mental note, pack the boy's nebulizer machine.
So, here we are I am doing the last minute cleaning of the house. You know so it is immuculate for nobody. I like that 1 mintute that after you return from a trip and you walk in the house and it is clean and untouched. One minute is really all I get though, cause with the amount of stuff we have to bring with us where we go, it gets trashed in no time. So working really hard getting the house clean... for that minute.
Packing with Aiden is a whole nother story. We don't just get to eat at normal resturants and snack where ever we are... Aiden can not eat anywhere. So we bring the big cooler fill it with ice and pack frozen hot dogs, chicken nuggets, rice drink (cause you know the vending machines are STILL not carrying rice drink!?- she says sarcastically)Then the joy of refilling the cooler with ice every day, draining the melted water, and carrying baby coolers everywhere we go. I hate food allergies. Ps/ that also means Joey and I eat in shifts. Oh what is it LIKE to go to a resturant sit in front of a menu with your family and just eat? Lucky lucky.
Gotta pack those meds and sryinges too! With the new antibiotics Aiden currently is on 11 medications. Unfortunatly of these eleven medications only 2 of them are in a pill form. The rest are sticky messy bottles of his drugs. Packing that is always fun. One time we were in Atlanta and we had just been discharged from the hospital. It was late close to 8:30 when we were ready to give Aiden his prograf (his main immune supression medication) and when we opened up the medication cooler.. there it was.. sticky pink liquid spilled all over. This was NOT good. Firstly, no one compounds prograf. It isn't just at your local pharmacy. It is very complicated to get and compoud, and so there for.. it spilled we had no medication. Thank goodness I know other transplant moms in almost every state from our support group, and late at night I dialed one mom's number. "HELP we need prograf". That sweet family drove to "Mr. McDonald's house" where we were staying and brought us a few days of doses. Thank God for them, cause spilling medication late at night on a weekend.. could mean rejection by monday morning.
Ahhh to be a liver mom. You know it is funny... even though the allergies and the blood pressure and the kidneys and the no school and the other things are what really take up my mind.. it is all that liver. The original disease caused it all. I don't think of myself as a "liver mom" everyday. You know I am just Aiden's mommy. But when you are packing, getting ready for a wedding, just wanting to enjoy the bliss of new love, 'Liver mom' has to step out of the sidelines and help me pack. She has to help me locate good hospitals along the way. Liver mom has to plan for emergencies and make sure she doesn't forget blood pressure cuffs like she did last time. I don't really care for Liver mom... she is kind of a know-it-all and a perfectionist. Can't we just relax? Nope not like others do. Liver Mom justy reminded me to be thankful we weren't flying... you know airplanes' and peanuts? Oh yeah.. Then she would have to get Allergy Mom and that lady is a FREAK! Her and her clorox wipes!
Ok ok.. so Is it THAT obvious I am all revved up? Lets just get down to the REAL reason.. it isn't the packing. It isn't even Aiden. Tomorrow... Mason's neurologist appointment. The long awaited appointment. You know the one where he looks at Mason, waiting to see VAST improvement, looks at those metabolic tests, and then schedules the muscle biopsy and skin biopsy. You know the one that I AM GOING ALONE TO?? Yes. that never sets us up for a good scenario.
Setting the scene for bad news:
1) Lisa is alone at appointment
2) We are leaving town the very day we have the appointment
3) I am in full rich denial that there is something wrong with my baby
4)The other child is sick at the same time
5) yes.. it is close to a holiday. (ok a wedding isn't a holiday, but it is pretty similiar!)
The ONLY thing we have going for us for tomorrow's appointment is that I am ACTUALLY preparing for bad news. That is different. Usually I go into the nuerologist with that "everything is fine" attitude, and then I am blown away. So this time.. I am going a different route. Maybe it will work.
I am So not superstitious.. but if you follow any other caringbridge families you will know.. after 5 years of being a mom to a chronically ill child.. we just pick up little superstitions and "habits" along the way.
Joey always packs the same boxer shorts for every admittance. He can't even wear them any more cause they are so torn up, but there they sit in Aiden's over night bag. They are the same ones he wore during our wedding.. (sorry joey to tell your secrets all over the internet)
When Aiden was transplanted he was in Atlanta for FOUR months. Not to step foot in our home for four months. (that stunk) We wanted to go home SOOO bad.. so then my parents drove up to Atlanta with Aiden's excersaucer in the back of their SUV and Poof it was like Magic.. we were discharged. Every admittance we had after that for about 9 months... the excersaucer joined us. (even if we drove to Atlanta vs flying JUST because of the excesaucer)
We always pack Aiden's special bed sheets and special trains.. There are certian trains that just always HAVE to go to the hospital with us. (you know the ones with LEAD BASE PAINT??!! - if you didn't hear Thomas the Tank Engine did a recall on all of their red trains.. you know the ones- Aiden's favorite?!! They carry lead base paint.. nice huh?)
SO for me to stand back and look at mason's neurology appointment with a tad bit of superstition... is only natural. I am hoping and praying that it is fine that the string of bad news that we keep getting for my Grady is done. That we just have all these mild issues all that sound scary that really aren't scary.
"
Mason has Global Delays.... but it isn't SO terrible.
Mason has a lesion in his brain...but it is a SMALL lesion
Mason has changes in his myelin... but unless it progresses, it isn't THAT bad
Mason has cerebral Palsy.... but only MILD CP
Mason has metabolic disease..... but _________(we will find out tomorrow)"
So there you have it!! The confessions of a "vacation packing, house cleaning, antibiotic giving, inpatiently waiting for appointment- MOM"
Keep us in your prayers.. I will update tommorrow when I find out what the scoop is on our sweet Mason Grady.
XOXOXO
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
CookBook contributors:
Last week for recipes! Last I looked we had over 520 recipes! The cookbook looks SOOOO good. If you havent' had time to do a recipe... do not worry... you can buy a cookbook or two or three! Next week I will have ALL the information about purchasing and ordering the cookbooks!!
To enter last minute recipes go to:
go to:
http://www.typensave.com/login.asp
or Aiden and Mason's cookbook
Step 2:
contributor: YOU
Login: donatelife
password: hawk
Monday, June 11, 2007 3:53 PM CDT
If you know Aiden in “person” then you really can appreciate how “literal” he is. Halloween.. dressed like Thomas… “I am not Thomas I am Aiden.” When his friends play dress up, the sincere confusion about “being” someone else.. just doesn’t really register with Aiden. He does have an imagination… but more as the operator of the imagination. Thomas the Tank Engine is real so therefor he can play all day with them.
So when my very literal child is standing in a tiny tuxedo next to a little girl in white, standing before people standing before God, sharing vows.. It is only natural for him to take it a little differently than most children who are a little less literal.
Aiden thinks he is married. 
(Aiden and my daughter in law???)
He and the little girl named Hannah (not his playmate Hannah, we will call this Hannah ‘Georgia Hannah’) are now husband an wife…
“Oh mommy.. now that I am married to the ‘Georgia Hannah”, What will I tell my “Florida Hannah’ when we get home?” Aiden says wiping his brow.. really in a quandary.
“I just don’t know what to do… I guess my Florida Hannah is now just my ex girlfriend.”
After hearing this, I have only one question…”WHERE has my 5-year-old learned the idea of an EX GIRLFRIEND???!!!!!” To which my sheepish husband and sheepish son say… “Josh and Drake” simultaneously.
Josh and Drake is cute pre-teen show on Nickelodeon that Aiden and Joey watch together at night. I have shared my DISAPROVAL loudly, quietly and all over the place about my 5-year-old learning the ways and wiles of a pre teen, but Joey thinks it is funny.. and now my 5-year-old is not only married, but also has an ex-girlfriend. BOTH named Hannah.
The wedding was amazing. Seriously, I am not just saying this, it was really amazing. The love was everywhere and it felt great to get out of town and be surrounded by family and people who were so full of hope and excitement. It was good for the soul. 
(at the beginning of the rehearsal, Aiden walking down the aisle, with his famous "thumbs up")
(alright, everything looks pretty good here at this point in the rehearsal)
(Aiden sort of praying that it would be over soon)
(the mushy gushy stuff... it was all Aiden could take)
The wedding went off with out a hitch… well ALMOST with out a hitch.
Picture it now… HUGE glorious wedding in front of old antebellum mansion on the lawn. The bride and groom who could have been cut out of a magazine standing on the grand marble steps of the mansion in front of 400 or so guests.
It is now Aiden’s turn to walk down the brick path ringing an old bell announcing the bride. It was very moving. As he passed us in the aisle and stood on the step in front of everyone, he gave his classic thumbs up. And of course wouldn’t put the thumb down until, everyone gave it back to him. Ahhhh ok.. not so bad. He is now standing with his hands crossed like all the groomsmen. He is perfectly still. OK ok.. this is gonna work... breathing a little easier.. The bride is standing before her groom, Aiden is watching, I can tell he is gonna be good. Then suddenly his legs stiffen… his back straightens… and I know what is about to happen. OH NO!
Aiden slowly turns around.
Faces me (and 400 or so guests)
And mouths ever so softly and obviously…
“I HAVE TO GO POO POO”
If that wasn’t enough… he continues to mouth it perfectly so that every single person in the entire property can read his lips.
“I HAVE TO GO POO POO”
I am in a full panic.. I think I might faint. Thank GOD for sign language.. and I sign to him… “WAIT WAIT WAIT WAIT” He clamps down and turns back around.
Everyone near me has seen it. I hear the words “America’s funniest video” muttered. And I look beside me and I see not only my Mom but also my Dad praying… I would love to be the angels and hear THAT prayer.. “Lord let him not poop.. let him not poop”
So Aiden is perfectly still we are able to hear the vows, to be moved to tears, and see them Kiss as husband and wife. (to which Aiden covered his eyes)
It was told to me that when Aiden walked down the aisle and held the hand of his cousin (the Father of the groom) that Aiden turned to him as they watched the groom and bride be carried off in horse and carriage… and said
“That Boy used to be my cousin… but now he is married.”
I guess I know how Aiden must have felt watching his cousin ride off on that carriage, cause I keep looking at Aiden this morning and thinking.. “That used to be my baby… but now he is married.”
I hope you all have an incredible week… we are rejoicing the news that Mason’s tests from the Mayo Clinic for the Long Chain Fatty Acid diseases came back NORMAL.
God Bless!
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
**** ONLY 12 DAYS LEFT FOR RECIPES!!!****
Please check the journal history for the link to the cookbook stuff. Thank you everyone who has participated.. at last count we have had over 80 contributors. Keep passing it on, the more recipes the better the cookbook.
Thursday, June 7, 2007 12:20 AM EST
Well... we are off this weekend to see my cousin get married! I remember Tee when he was just a baby at my Grandma's house. The cutest baby in the world... and now he is getting married. She is as amazing as he is, and they will be getting married on June 9th... mine and Joey's wedding anniversary. What is more romantic than sitting next to the man you adore and love, watching someone else say those same vows you once said together?
And of course the added bonus we didn't get to have at our wedding.. the ring bearer.. well lets just say, I hope Aiden doesn't grab the microphone and do his best rendition of "Happy Birthday". Yes you heard that right... not only one.. but TWO people have asked our Aiden to be the ring bearer in their wedding this month. That means that they are family loving, laid back people that love my son, and are a part of our family... OR... their live entertainment cancelled, and Aiden is their fill in.?? I guess we will see when we arrive!
Joey: My love. I remember 5 years ago laying on that hospital floor together after Aiden had his Kasai, watching Toy Story, celebrating our very first wedding anniversary. I remember you promising me, that it would get better. That life would be better for us the next year... and baby.. you were right. It is better everyday with you. I love you. Happy anniversary.
Mason is doing amazing... who cares what these stupid tests say... he is amazing. Smarter than a whip, learning to walk, learning to talk. I am done being worried. Done being sad.. life is still good.. even if on paper it sucks. Life is still good.
XOXOXOXOX
God bless you for the cookbook entries.. Thank you.. and keep em coming!
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Previously posted:
WE ARE READY TO START THE COOKBOOK!
As most of you know we have decided to do a fundrasing cookbook for both Aiden and Mason's ongoing medical expenses. We emailed out to some family and friends and the responce was overwhelming and supportive. We are so excited about this cookbook because not only will it be a treasured keepsake for us, but also it will include your recipies and names.. all the people who have fought along side us. So with all of that said... we are ready for phase one! THE RECIPES!
THIS IS SOOO EASY with modern technology... here is how it works:
Step one:
go to:
http://www.typensave.com/login.asp
or Aiden and Mason's cookbook
Step 2:
To log in, enter your name as the contributor, then use the Group Login: donatelife, then use the Contributor password: hawk . Add as many recipes as you can. We are looking for 3-5 per person to start, but will take more!!!!
contributor: YOU (ex: Joe Shmoe, friend of Aiden and Mason)or (Stacy, liver transplant mom)
Login: donatelife
password: hawk
STEP 3:
You will then see it is very easy how to do it! It has the spots for the serving sizes and measuring amounts, it will make it nice and neat for you! I also added a special catagory called "ALLERGY ALLEY" I hope to have this filled with safe foods for the allergy children! So may kids who have biliary Atresia suffer from life threatening allergies! And a good recipie is a LIFE SAVER! (litterally)
STEP 4:
do it again and again and again!
We have a recipe deadline of JUNE 23rd!!. Dig through your old cookbooks, even off the top of your head! Under the this and that section include things for arts and crafts... like homemade playdo etc...
THAT IS IT!
Please know, if you are unable to purchase a cookbook, we would still love your recipes. This cookbook will help rebuild Aiden's transplant fund and offset some of the therapy and medical costs from Mason.
We just love you all to peices and thank you so much for that amazing responce we got when we started this process!
LOVE AND THANKFULLNESS!
Thursday, June 7, 2007 12:20 AM EST
Well... we are off this weekend to see my cousin get married! I remember Tee when he was just a baby at my Grandma's house. The cutest baby in the world... and now he is getting married. She is as amazing as he is, and they will be getting married on June 9th... mine and Joey's wedding anniversary. What is more romantic than sitting next to the man you adore and love, watching someone else say those same vows you once said together?
And of course the added bonus we didn't get to have at our wedding.. the ring bearer.. well lets just say, I hope Aiden doesn't grab the microphone and do his best rendition of "Happy Birthday". Yes you heard that right... not only one.. but TWO people have asked our Aiden to be the ring bearer in their wedding this month. That means that they are family loving, laid back people that love my son, and are a part of our family... OR... their live entertainment cancelled, and Aiden is their fill in.?? I guess we will see when we arrive!
Joey: My love. I remember 5 years ago laying on that hospital floor together after Aiden had his Kasai, watching Toy Story, celebrating our very first wedding anniversary. I remember you promising me, that it would get better. That life would be better for us the next year... and baby.. you were right. It is better everyday with you. I love you. Happy anniversary.
Mason is doing amazing... who cares what these stupid tests say... he is amazing. Smarter than a whip, learning to walk, learning to talk. I am done being worried. Done being sad.. life is still good.. even if on paper it sucks. Life is still good.
XOXOXOXOX
God bless you for the cookbook entries.. Thank you.. and keep em coming!
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Previously posted:
WE ARE READY TO START THE COOKBOOK!
As most of you know we have decided to do a fundrasing cookbook for both Aiden and Mason's ongoing medical expenses. We emailed out to some family and friends and the responce was overwhelming and supportive. We are so excited about this cookbook because not only will it be a treasured keepsake for us, but also it will include your recipies and names.. all the people who have fought along side us. So with all of that said... we are ready for phase one! THE RECIPES!
THIS IS SOOO EASY with modern technology... here is how it works:
Step one:
go to:
http://www.typensave.com/login.asp
or Aiden and Mason's cookbook
Step 2:
To log in, enter your name as the contributor, then use the Group Login: donatelife, then use the Contributor password: hawk . Add as many recipes as you can. We are looking for 3-5 per person to start, but will take more!!!!
contributor: YOU (ex: Joe Shmoe, friend of Aiden and Mason)or (Stacy, liver transplant mom)
Login: donatelife
password: hawk
STEP 3:
You will then see it is very easy how to do it! It has the spots for the serving sizes and measuring amounts, it will make it nice and neat for you! I also added a special catagory called "ALLERGY ALLEY" I hope to have this filled with safe foods for the allergy children! So may kids who have biliary Atresia suffer from life threatening allergies! And a good recipie is a LIFE SAVER! (litterally)
STEP 4:
do it again and again and again!
We have a recipe deadline of JUNE 23rd!!. Dig through your old cookbooks, even off the top of your head! Under the this and that section include things for arts and crafts... like homemade playdo etc...
THAT IS IT!
Please know, if you are unable to purchase a cookbook, we would still love your recipes. This cookbook will help rebuild Aiden's transplant fund and offset some of the therapy and medical costs from Mason.
We just love you all to peices and thank you so much for that amazing responce we got when we started this process!
LOVE AND THANKFULLNESS!
Saturday,June 2, 2007 2:21 PM CDT
Hi all,
I just wanted to do a little family update, plus medical update on some of Mason's tests. The last few weeks have been really exciting with the cookbook etc. Lots of playing outside, but also seeing the heat has been effecting Aiden a little. He just gets over heated, and we see a spike in his Blood Pressure. But only once this week I had to do the mid day dose. I think with the kidneys and the BP stuff we will just be doing a lot of water playing, to keep cool. Aiden also got a nice little X ray on his "BUTT" as he calls it... cause he managed to jump on his back from our waterslide. When the pedi asked, WHY he did it.. he responded an answer that just seemed so obvious to HIM, "Cause I wanted to see what would happen".... Of course.
So, I also had the JOY (sarcasm dripping) of drawing BOTH of my children's labs on wednesday, Aiden's normal stuff. (which looked like his usual CBC mess, but perfect liver) And then Mason's Metabolic labs and organic acids etc.. Well i was sure sure nothing would show on those tests, and unfortunatly I recieved a call yesterday from our pediatrician, confused and informing me that he has a carnitine deficiancy. Ugh. So.. needless to say, the ONLY test that is back from the 20 or so that was run was NOT normal. Metabolic issues, rare of course, and now we will for sure need that muscle biopsy, and more tests. I managed to google (you know BAD IDEA) "carnitine, myelin, developlmental delays" and well lets just say, it was pretty horrific. SO here I sit waiting to know what is next.
I do know that our pediatrician had contacted nuerology, and that we STAT ordered the labs that were sitting there waiting for a batch to be run. I also know that we will be seeing a genetics doctor to see what THEY can reveal about our Mason.
So as you can imagine, I am seriously heart aching broken sad. Not really cause of what it could mean, but cause I have had my fill. I am just heart broken aching sad cause I am so over it. Just as I was celebrating that he "JUST had mild HCP (hypotonic CP) and JUST had myelin changes, and JUST a cyst not cancer on his brain." JUST AS I was ok with all of that.... more peices to Mason's little puzzle.
So I feel like a bus is sitting on my chest and I am just sick at the wait for the rest of the results. I am just sick about it. And so because of that..... Mason decided to begin walking for real.
Walking.. steps steps... stand up... waslk ing steps steps... The biggest most precious grin on his face when he walks. SO proud! Oh and I also wanted to report that my child now is totally saying these words:
DA (for daddy)
UUUUPPPP (up)
DOOOOSE (shoes)
UHHH - OHHHHHH
Tears flow reading what I just wrote. I know that the doctors will do their job and discover what they need to discover, and we will do our job, loving him and basking in his growth.
Can I just say THANK GOD that we found the carnitine deficiancy.... cause if we didn't.. the outcome would not be good.
keep praying.. for all of us. And thank you so much for the recipes. We reached 200 in one week. Keep them coming, pass it on to family and friends... The sooner we fill our 500-600 goal, the sooner we can publish them and sell them.
The cookbook title:
"Snip, Snails, Puppy tails... and other favorite Recipes."
Love and thankfulness for all of you...
Love,
Lisa and the 3 boys
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Previously posted:
WE ARE READY TO START THE COOKBOOK!
As most of you know we have decided to do a fundrasing cookbook for both Aiden and Mason's ongoing medical expenses. We emailed out to some family and friends and the responce was overwhelming and supportive. We are so excited about this cookbook because not only will it be a treasured keepsake for us, but also it will include your recipies and names.. all the people who have fought along side us. So with all of that said... we are ready for phase one! THE RECIPES!
THIS IS SOOO EASY with modern technology... here is how it works:
Step one:
go to:
http://www.typensave.com/login.asp
or Aiden and Mason's cookbook
Step 2:
To log in, enter your name as the contributor, then use the Group Login: donatelife, then use the Contributor password: hawk . Add as many recipes as you can. We are looking for 3-5 per person to start, but will take more!!!!
contributor: YOU (ex: Joe Shmoe, friend of Aiden and Mason)or (Stacy, liver transplant mom)
Login: donatelife
password: hawk
STEP 3:
You will then see it is very easy how to do it! It has the spots for the serving sizes and measuring amounts, it will make it nice and neat for you! I also added a special catagory called "ALLERGY ALLEY" I hope to have this filled with safe foods for the allergy children! So may kids who have biliary Atresia suffer from life threatening allergies! And a good recipie is a LIFE SAVER! (litterally)
STEP 4:
do it again and again and again!
We have a recipe deadline of JUNE 23rd!!. Dig through your old cookbooks, even off the top of your head! Under the this and that section include things for arts and crafts... like homemade playdo etc...
THAT IS IT!
Please know, if you are unable to purchase a cookbook, we would still love your recipes. This cookbook will help rebuild Aiden's transplant fund and offset some of the therapy and medical costs from Mason.
We just love you all to peices and thank you so much for that amazing responce we got when we started this process!
LOVE AND THANKFULLNESS!
The Hawk family!
Saturday, May 19, 2007 1:23 PM CDT
An update about nothing....
Summer is here! Oh wait.. I live in florida.. summer is ALWAYS here! But it is official, T ball season is over and it is time for the kiddy pool in the back yard, and summer BBQ's. My favorite time of year.
It is so weird, even though no one is attending school in our home, the mark of school's last day has me all excited! Aiden's little friends are home for longer days...and lets face it, this is a nostalgic time.
I was raised in the Chicago suburbs and we had real season's and when school was out there was just a "smell in the air"... you know, the smell of summer. I remember being a little girl and having field day on our last day of school, and having to empty out my cubby and that exhailarating feelign you get when you are on your last day of school, running home to just put all your effort into playing and riding bikes and swimming. Of course it also ment I could spend ALL day at the barn riding my horse and driving my trainer crazy. Summer is a time of freedom and fun and well.. I guess I just described Aiden and Mason's life...No wonder they are such happy kids!
I can't believe we are at the brink of Aiden's kindergarten year. It just seems so quick and just like it was yesterday when he would walk around with his binki and cuddle in his crib. And now.. well...Today he recieved his frist trophy. A big red white and blue trophy with what he calls "some man and a bat" on it. T ball trophy to Aiden Hawk 2007. Aiden already is thinking about next season, and told me that he can't wait till he plays on the "big" field. Slow down! Your only 5! What is the hurry?
Sometimes I look at this journal and think wow we have come SO far... but looking at this as the year that "School" (even if it is homeschool) is beginning... I think we have SO much farther to go. Parts of me can't wait, and I am so hopeful for his future. He is doing tremendously well! His liver looks so happy on his labs. He still has the polcythemia (bone marrow over production) but his kidney's are happy and his blood pressure is so stable that I only take it every so often in the week. I admit it.. sometimes... sometimes I look at him and just forget. And that to me is a miracle.
We went to a neighbor's birthday party today.. Aiden's precious little friend, and she had a pony at the party. At this point all I have heard for the last hour is.. "I want a pony" And as most of you know... I want a pony more! BUt Mason... Oh to see him on that pony, he LOVED IT. He just signed "more more more more" and "GO GO GO GO GO" he was so floppy and relaxed, and I just loved to see him on it. He was recommened for Hippotherapy, aka horse therapy, and you know I AM ALL ON THAT. It is amazing how the movement of a horse is exactly the same as a human. So even if he isn't using the muscles for walking the horse under him makes his body do it. I volunteered for years at a 'horses for disabled riders' in Georgia, and then when I graduated college/ got married the first job I was offered (and was about to take) was at a facility for children with severe dissabilities. The first aspect of my job was a social service positiion and the other was incorperated in the horse therapy. Weeks later after I was offered the position, I started feeling queazy... and sick to my stomach... More tired than usual... and viola! I was pregnant with Aiden.
It is "funny" how life lead me full circle. I was ready to work with children with dissabilities, severely and moderatly handicapped children. I loved the job that I was offered, but once I knew I was having my own baby, I knew I would stay home with him. And home I have been. Who would have thought that I would one day bring my own child to horse therapy? It is just amazing how God has blesses us in this life. Not only sympathy but empathy I have learned to have for others who have a more challanged life.
So Mason loved his first pony ride. I think we have to wait two more months for the therapy to begin for him with the horses. The silly goose isn't walking at all. He didn't take any more steps in therapy this week. Nor any at home. He just didn't know it was HIM doing it. He thought he was being held, so when I encourage him to take a step he looks at me like... "ARE YOU NUTS LADY?!"... so hopefully soon, he will realize what he did, and will be walking.
Life has been so good lately. And to mark the beginning of summer, I am off to set up a picnic blanket in the back yard, and watch the butterflies in the butterfly garden, and listen to the sweet sound of my children playing.
Go and enjoy this time we have been given!
Love
Lisa and the boys (3 of them)
Saturday, May 12, 2007 9:08 PM CDT
MONDAY UPDATE:
Today MASON walked.
didn't hear me?
TODAY MASON WALKED!!!!!!!!!!!!!!
During the best PT appointment, with is trunk orthotic (superman vest) and his new ankle orthotics that little boy decided to give me a very happy mothers day present. He took His first steps!
(of course he has no idea he did it, and won't repeat, but it WILL come.. I just know!)
Next thing you know the lesion on his cerebellum will be gone and the spots of changed myelin will be normal and we will have ourselves a miracle!
I think I am going to write a letter to that nuerosurgeon when Mason is talking and showing his brilliant self and say, "Please never tell a family that their child is most likely will have a low IQ and low cognitive ability.... cause some parent's believe in PRAYER!"
Keep praying! I know this is just gonna get better and better!
I am getting my running shoes on ready to chase around the worlds cutests toddler.... I just can't wait!
Love, Lisa
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Mother's Day....
Oh what a journey this has been. Being a mom has been more than I ever thought it would. When I was pregnant and carrying Aiden, I sure thought it would be different. All in all, it has been the most amazing and fufilling experience of my life. 
Aiden was born at 9lbs even. It was a tough labor, but the following days were like a blur. We knew he was sick, but the extent of HOW sick was up in the air. I remember taking him home, after him staying in the hospital for ultrasounds, multiple labs, and of course the bili lights. Here we were nestled in bed. He was only 10 days old, but I felt like we had already conquered the world together. 
Oh how I adored to feed him. I remeber that little gulp gulp.. SQUEAK.... gulp gulp ... SQUEAK....Of course that too was effected, instead of nursing him I had to pump and feed him formula until the tests came back whether or not he had a rare disease called glactosemia. At two days old he was spilling milk sugar in his urine, little did we know it was "just" his famous milk allergy, not the terrible disease.
Like most new mommies, I was rarely out of PJ's... and Aiden was rarely out of hospital gowns. In the first few weeks we had many tests, this picture was the day before his liver biopsy. The first of many. I was just so in love with him. I look back at that new mommy and feel so proud of her. It was at this piont, I realized it I couldn't do this stuff alone, and I turned to my faith. 
It was official he had been diagnosed with Biliary Atresia, and was out of the hospital for a week stent. At only 3 months old, this was the best month we had and will have until his liver transplant only 5 months later. It was such a great month. And honestly I feel SO lucky that I can remember the months Still now. I remember what we did, all I used to do with him. It was such a time of joy and rest.
Motherhood has been amazing. OK yes there are the moments where I am pulling my hair out, yelling acrossed the playground at my hpyed up 5 year old, and lugging a non toddling-toddler on my hip. Uhh wait that just described my EVERY day. (And I love it!)
Sometimes I sincerely ask myself, WHAT was I doing before I had children??? What could I have POSSIBLY been talking about? Yes it is true I have changed. I am a different person, what do you expect? Am I to stay the same young girl who thought life was about horses and all the stuff inbetween the times I was riding? Gosh, that girl would never make it through the stuff I have seen. Not everyday has been pretty....some days have been scary..
Oh wait.. not THAT scary.... try again...
But yet still, you are looking at the face of a mother. None of us expect HOW much our children change us and help us grow. But they do. All children do. My growth just so happens to be around different topics than the average mom... but it is still average mom stuff too. 
Today THIS face finished his very first season of t-5 tball. Yep folks, no admittances. No problems with the peanuts. Nothing but getting dirty, hit the balls, and making memories. Being a mom to THIS child has been amazing...
and then came you.
Here I am holding my new precious baby Mason the day I delivered him, showing him to his big brother Aiden. Oh my heart SWELLS with pride when I see this photo. Yes Aiden, he is finally here. Your built in best friend... Mason
I remember this day not just because it was the day we saw the face of our second child, but it was the day I became a mommy 2 times. 
A day when my greatest loves finally met.
Mason Grady was born a tiny 6 lbs 15 ounces... (well tiny compared to his hoss brother) And yet again, my second child doesn't come home with momma. Blood draws, labs, and more bili lights for this peanut too. Jaundice, and even worse off than his brother, well... at least in the beginning. But he came home and joined the family just 6 days later. Most of you were reading my site back then, and remember what we came home to. And where we went next. Tenessee.... To be with my friend Angel Haley's mom, Cheryl, as she said good by to her child who had flown to Heaven. No mother should experience THAT kind of motherhood. A ministry of sorrow. 
We came home and I held my children tighter, and haven't softened my grip. Things have been amazing with both of my boys. I have been humbled and humbled and humbled again and again. Each time I think I have it all figured out... we have a new suprise. And that is just fine, by me.
The laughter is what I want my children to look back on and remember, when they are having children of their own.
But for now.. while they are young... this mother on Mother's Day is just greatful and thankful that God picked these two monkeys, these two precious children, to be mine.
Happy Mother's Day to all of you. And a special HUG to all of the Caringbridge moms, Liver moms, and especially the Angel Mommys who miss their little ones So much.
God bless
Lisa
Monday, May 7, 2007 5:50 AM CDT
OK let me start by saying, THANK YOU for praying for Baby connor, he is home now recovering and looks like he is healing and going to be just fine! THANK GOD!
~~~~~~~~~~~~~~~~~~~~~~~~~~~
SATURDAY WE HAD A BLAST!
THE MAKE-A-WISH walk for wishes was wonderful!!
We had a GREAT time! Who would think I could have THAT much fun before 8:00 in the morning? But we did! Of course MAW is an amazing organization, with incrediable support from the community. These kids deserve SO much and are given this unfair shake at life. Some with cancer, physical dissabilities, organ transplant, etc... life threatening problems. MAW makes sure that even though life has dealt them some poopy circumstances that they have SOMETHING that just makes them smile.. specifically because of their illness.
Aiden's Wish was his "club house"... He has a beautiful wooden playset, that was donated by "Woodplay" and since Aiden has a fascination with firemen, he also got to spend the afternoon riding in the firetruck, having lunch with the firemen, and they helped put the playset together! Aiden thinks the firemen gave him the playset, but it was all just so wonderful. And the BEST part about Aiden's wish is... He gets it ever day all the time. Whenever we walk out back and he runs into his clubhouse, and touches the sign that says "Aiden's club house" He knows that someone else CARES that he has to go through so much. So...THANK YOU Make a Wish!
OK back to the walk...Aiden was one of two "spokes children" for the walk, so it was extra special for us. I have to admit, I was LOUDLY choking back tears many many times that morning.
Here are some pictures! (be sure to see them all especially the last one)
Here are the Tampa Bay, BUCS cheerleaders, and some of the Mascots from the local sports teams. 
Aiden thought that "Raymond" the D rays guy was the BEST! Of course when he was hugging it, he wasn't so sure why he "smelled so bad" haha
Ok so it isn't the best picture... but it is a close up of our family lined up with all the families that got wishes... the next photo is the same but incluiding everyone who had a wish kid.
So many amazing kids!
They had a warm up... it seems THAT was why the Bucs cheerleaders were there. And Aiden went out and did the warm up...HOW CUTE!
Then When the walk was ready to start, Aiden got a microphone (YES this could have gone one of two ways folks... "Hey lady you have bad breath!") But thankfully he was precious and sweet and said what he was supposed to: "ON YOUR MARK, GET SET, GO!" 
Aiden led of the walk. He had everyone laughing so hard, cause he just SHOT out of there with out me or Joey... he just started running with that dog thing.Aiden was yelling, "I am gonna WIN the RACE!".... Ummm Aiden, it ISN'T a race...But he couldn't figure that out. So when a jogger went by, he said, with his big annoucer voice, "IT LOOKS LIKE THE RUNNING GIRL IS IN THE LEAD!" And everyone arond us burst out laughing! (too much Nascar with daddy I am afraid)
Here is a photo of some of the walkers... pretty impressive huh?
After it was all over and done with Aiden posed with yari, his MAW sponsor. Aiden was the first wish she had done. And I just love her. Thank you Yari!
It was definitly a day to remember.. err uhhh a morning to remember. And we can't wait till next year. Hopefully the preceeding months won't be so hectic like they are now, and we can really plan a team.
When it was all said and done, there was one person we had not forgotten about. The reason Aiden got to be the spoke child, the reason Aiden is here with us... His angel donor. We know that angel is always shining down on us, and thankfully I got to catch that on camera:
Have a blessed week!
Much love,
The Hawk family!
Friday, May 4, 2007 2:36 PM CDT
PRAYER REQUEST
I just wanted to ask for some prayers for baby Connor.
4 1/2 years ago a wonderful person came to Atlanta to offer being a donor for Aiden. She went through two days of testing, and was found to be Aiden's perfect match. THAT night, Aiden got the call for a cadaveric liver, and Sara (our friend) was not used. She was ready though to lay her life on the line for my son.
Today Sara's baby Connor is sitting in a hospital fighting menengitis. He is less than a year old, and is so sick. Please offer prayers to this family. I am now sitting in HER shoes, as a helpless onlooker as she watches her baby sick in a hospital.
We love you Sara and just want to let you know that to me... you are an angel on earth, and prayers are being offered all day.
jingles and prayers for you baby connor...
Aiden sends some Lion roars to you.
Love, Lisa
XOXOXOXOX
PS/ Sara's previous last name was Mason... And we are proud that our second child shares the same name. WE LOVE YOU
Tuesday, May 1, 2007 12:40 AM CDT
I am just exhausted. I guess it is all of what has been going on for the past few months finally catching up with me. I feel like I have been in fast forward for months now.. and finally a breath.
Sometimes with the "breath", I just let my guard down and really "take in" what is happening. This is a good thing, but a tough time. It is a process we have to go through.. sort of like we grieve the loss of what we thought we had... (a healthy child that will never see the inside of a hospital unless he gets a boo boo or a cold) and accept that instead we spend 4 days a week in intense therapy, have been under anesthesia several times, and have more pictures of my baby's brain that I know what to do with!
Don't get me wrong, I am the first to know how lucky I am, and how thankful we are that things are this way. But... it is true, I wish it was easier. Especially on the boys. Especially on people who love us. ANd of course on Joey and Myself.
I was talking with my pediatrician (yes I say MY pediatrician, cause she is MINE and the boys..) and she made a comment to me... "Lisa the road to motherhood is paved with guilt, please don't walk down that. This has NOTHING to do with YOU."
She knows me too well. She knows there would be a time where the whirlwind would settle and we would be in between storms. And of course, I can't help but to hear the dreams in my head tell me that maybe if I did something different this would not be happening with Mason. Or the dreaded question... WHY TWO of my babies?
Hypotonia. Global delays. Brain damage. Cerebral Palsey, Myelin changes. I ask my self, when I was pregnant with Mason and we had the high fluid level warning us a problem with his central nervous system... why didn't I look into that? I mean I just let them do the ultrasounds every single week for 3 months and just smiled and waved at my baby...I just assumed... that I already DID my 'time'. I assumed that there could be NOTHING wrong...I already had a medically complicated child.. I was SURE it can't happen again.
Don't get worried folks, I know the answer to these and the other thousand questions I pose... I know it has nothing to do with ME. Because I know my hearts desire is to have my baby have a healthy normal and easy life. I know that God has a plan for all of us. Even if I had a different plan.
I guess I feel somewhat fooled. Fooled by the lie I think we all like to tell ourselves. "Good things happen to Good people"... But sometimes bad things happen to good people. SOmetimes tragic terrible things happen to good people. And it doesn't make a ton of sense, but it isn't MY job to make sense of the world. Just mine to get through it. Finding the joy in everything, and then when there are days or weeks like this.. when I feel pain and sadness... just FEEL it. It is OK. It is OK to just feel sad sometimes.
I was sitting at the hospital today with Mason, and suddenly it dawned on me after the fourth person said Mason's name (including the lady at the starbucks) that again, one of my baby's is on a first name basis with all the employees at All children's Hospital. Ouch. Why isn't it when I am at Target and I run into someone it isn't some random teacher at a school or a waitress at our favorite family resturant? Why is it ALWAYS nurses, or doctors, and now therapists? I guess that is ok. Nurses are great people. (they are some of my very best friends!) And I love most doctors... I said MOST. (*tee hee)It is ok.
So it is official, I never really GO back in my journal history (mainly because I get a migraine from the drama) but there are times like these in there somewhere, where I just need to say... I am sad. Ok there I said it.. I am dissapointed. NOT dissapointed in my AMAZING children. NEVER! But dissapointed that the road seems to be bumpy, and that I had assumed it would be smooth. Kind of stupid to just assume that. But I did.
So anyway... The amazing selfless ladies of the MOM's club donated a house cleaning (or 2 or three!) to our family. They came, made my house sparkle... and today I just sit and relax. Taking it all in... Mason is doing tremendous. He is just tremendous! He is so mentally "there"... waving and smiling and now shaking his head "no no" and even saying some sounds that sound like real words. Like Bye... "IIII" and Hi "IIIII" ... he is signing like a pro. I mean seriously it is so cute. And even been enjoying working his muscles in his Mimi's and Grandpa's pool. Mason makes my heart explode. I am so proud of him. And then there is my Aiden. I got to sneak away last night from the concession stand in T ball, and watch him smack the ball. That was cute and all but the best part was watching him on the bench with his friends. He is like the "little rascal" swinging his feet, making boy sounds, and clapping his hands with his buddies. Talk about your heart exploding! Oh.. I am so in love with my kids. (And their daddy isn't half bad as well.)
A lot of people say to me things like "Lisa I don't know how you do it." Infact I hear that more than I hear ANYTHING. I talk about this a lot with my sweet friend Cheryl. We talk about how the Bible says, (yes AGAIN with the Bible talk! :-) that His grace is sufficient in us. It doesn't say that His Grace is abundant.. or a lot.. or exceptionally overboard... Just "sufficient." That means JUST enough to get by. And on days like this.. I KNOW that is true.
SO anyway... take a moment, hug your kids, or if you have none, call your parents, or if you have none, kiss the family pet.
Love and gratitude for all the prayers and support. I know that BOTH my children will have wonderful miracles and they will amaze us all.
Ps/ to all those I sent out the idea of the cookbook to... THANK YOU for the ovewhelming replies!! We are going ahead with the cookbook fundraiser, and I can't wait to tell you all when we are getting started (just waiting on my information package!)
Hugs and love!!
The Hawk Family
Joey , Lisa, Aiden and Mason
Friday, April 27, 2007 6:03 AM CDT
Hello everyone!
I just wanted to share a funny story from our nuerology appointment... Mainly so I can have it my journal so Joey and I can have SOMETHING to laugh about when thinking of these times.
So we are at the nuerology appiontment and the nuerologist takes very special interest in Mason's nose. Also high arched palate, and some other characteristics he has. So one day I am at home and I am looking at him, trying to notice anything at ALL that is out of the ordinary. You know, help anyway i can with a diagnosis.
SO back at the appointment, The nuerologist again says, "where does mason get his pug nose?"... we talk about it and some other things he was looking at and I decide to give my bit of information to "HELP"... and this is how it went:
Nuerologist: "So where does he get his pug nose from?"
Me: "well since I think he is Joey's clone, I say Joey."
Joey: "I don't have pug nose"
Nuerologist: "No you don't. There are just a few things I am curious about."
Me: (Thinking I am SOO clever for figuring this out) "well Dr. Casadonte, I noticed something!"
Nuerologist: "what did you notice"
Me: "He has really hairy legs for a baby..."
I look up from Mason's legs and notice the looks on Joey and Dr, Cassadonte's faces...
Me: "ummm errrr... ummm.. I mean.. is it NORMAL to have this much little white haris on your legs when you are a BABY? ummm"
I see Joey starting to grin a tad.. but thankfully the nuerologist sees me blushing cheeks and rolls closer to Mason.. Looking at his legs for the hair. unfortunatly the look of "Uhh what are you talking about" he can't hide.
Me: "well I know you can't see the hairs here.. but if you go in the sun you can see it! they are white!" (getting desperate)
Nuerologist: With a sweet look on his face at the crazy mom " Hmmm... never heard that before"
Joey (as plain faced as possible.. not even a grin) "WELL. if you think THAT is hairy... You should see my wife's KNUCKLES! What is wrong with HER?"
HAHAHAHAHAHAHA!!!!!!!!!!!!
And this my friends was the introduction to the Hawk family into the nuerology department.... nice. REAL nice...
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A week from tomarrow is the Make a Wish Walk for wishes! Aiden is the "honory Make a wish kid" that will be starting the walk off with a bang! Here is some information:
Who: The Make-A-Wish Foundation(r) of Central and Northern Florida,
Suncoast Region
What: Inaugural Suncoast Walk for Wishes
When: Saturday, May 5th, 2007. Registration begins @ 7:00 a.m.; Walk
begins @ 8:00 a.m.
Where: Al Lopez Park - 4810 N. Himes Ave., Tampa, FL 33614
The Make-A-Wish Foundation(r) grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy. Born in 1980 when a group of caring individuals helped a young boy fulfill his dream of becoming a police officer, the Foundation is now the largest wish-granting charity in the world, with 69 chapters in the U.S. and its territories. With the help of generous donors and nearly 25,000 volunteers, the Make-A-Wish Foundation grants more than 12,600 wishes a year and has granted more than 148,000 wishes in the U.S. since inception. For more information about the Make-A-Wish Foundation, visit www.suncoast.wish.org
and discover how you can share the power of a wish*.
If you would like to walk on Our team please email me at RolexH@aol.com .... Because of finding out that Mason has some issues I have been really too busy to get anything formal set up for the walk, but we will be there for sure! It is early but they have a GREAT playground in the middle of the place we are walking. I hope to see some of you there! :-)
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LOVE,
Lisa, Aiden and Mason... and my ever sooo funny husband Joey
Monday, April 23, 2007 12:38 AM CDT
A day in the life of Mason Hawk:
ingrediants for a crazy day:
You take 2 dozen or so colored wires
Glue and creamy stuff that sticks in hair
Bandage your baby's head like frankenstien
and then sit in the dark for 30 minutes..
after you think you are done, flash strobing lights really fast at the baby.
(caution mommy may faint from neurosis from the flashing lights)
"Ummmm.... what kind of 'play date' exactly is THIS?!"
"Ok admit it... I am still looking cute."
Is this some freaky Deja Vu? Oh no... it is just my OTHER son't EEG from last year! (aren't we lucky lucky lucky?! We get EEGs on BOTH of our kids! ~ rolling eyes) 
"NOT MY HAIR! nobody told me I would have a bad hair day!!!"
After the EEG we went home attempted a nap, but only after sleeping for 15 minutes had to leave for therapy. First off, Occupational therapy:
"You want me to touch WHAT?!"
Here is Mason sitting in front of shaving cream working on his tactile sensory motor skills. After thirty minutes of screaming at the shaving cream he slowly creeps up to it... sticks out one finger and then... touches it with THIS facial expression.
"Ok, I touched it... now can we move on?"
After the big shaving cream therapy day we move onto phnysical therapy where Mason got his new ankle braces! 
Here is Mason stradling on the therapy ball. This helps him with his balance. It took him over a month to sit on it, his fear of falling off of it has finally been conquered!
REACH, MASON REACH! Mason is working on his trunk muscles.. the most important ones used when walking!
You can see Mason's therapist is laughing, it is because of the loud grunt Mason lets out everytime he sits back up. (He sounds like Monica Sellas on a backswing. UGH!)
Last but not least: Mason's favorite part!!! Wearing his Superman outfit! Here is Mason's superman vest. Used to support his abdomen and also give him the sensory input of that muscle group! He loves the stairs!!!
Here is Mommy all tuckered out after 3 hours of nuerology, and 2 1/2 hours of therapy... err wait! that isn't me...(silly me! :-)
I hope you enjoyed the pictures! Just know I rushed home and baked a home made meal and cleaned my house immaculatly also! Well ok.. not really, a dear friend cooked us dinner and some other wonderful ladies donated a house cleaing for us! THANK YOU SO MUCH! I love you guys!!
ALl in all... it sucks to hear that your son has damage in his brain. It is a shame to hear that he has cerebral palsey (especially since I can't spell it yet), it is especially tough knowing today he turned 19 months old and that he should just be running and playing at the park instead of getting orders for lab work and genetics and muscle biopsies...
BUT....
BUT.. (you knew it was coming)
It always could be worse.
We are still feeling blessed as can be! Twice- blessed actually... twice blessed.
Love, Lisa
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Nuerology appointment update
I will update later tonight with more information, but I wanted to say a brief update:
The EEG was normal! YAY
But the MRI showed the de-myelinization and also Periventricular Leukomalacia(PVL) (click on that to read about it... basically it just says that for some reason (he was not a preemie) he has some damage to the white matter in his brain. The myelin is also changed in certian spots (which we found out last week is not good)... basically it is just one of the things going on..
The nuerologist is testing for metabolic disorders, with a TON of very specialized lab work (that means I never heard of it before lol) and also we will see a genetics specialist.
If (and he told me and Joey to hope that we find nothing)the labs show nothing, then we will do a muscle and skin biopsy to check for nevre and muscle information. He did mention that he did NOT think it was a form of Muscular distrophy.
He was leaning towards a syndrome of some form with Mason, since he has soo many symptoms. Until we get a diagnosis (I like to call it precious-cute syndrome). There was much more in the conversation than this.. repeated MRI to see if the dmage to the myelin and brain are progressive (this would be worse case scenario, but I am just not worried about that at all.. ok a little, but we aren't even "going there")
He also said that one of the things he can "coin him with" today was "hypotonic cerebral palsey." Finally at least some diagonosis, to help with getting him some assistance with dissability. (currently his copays average $2000.00/ month- and yes I know about all the grants, early intervention, and stuff we are applying but are waiting for the paper trail to end- trust me I am on it!)
So officially today was an ok day... tough to hear about the PVL, and de-myelinization, cerebral palsey, but happy to hear about clean EEG and the a plan.
Please pray for us, during this time. This obviously would be hard on any family to deal with... but in the mean time I also worried about my first child.. oh you know? the one with the LIVER TRANSPLANT? Kidney problems? Lief threating allergies? Bone marrow proliferation?... yeah that's him!
Prayers always gratefully accepted!
Love and Hugs
Mommy to Aiden- liver transplant and amazing child
Mommy to Mason- precious cute syndrome and amazing child!
Saturday, April 21, 2007 5:29 PM CDT
I can't believe Aiden is FIVE! It seems like yesterday when he took his first steps, and when he used to fit in the little onsies that Mason now wears. But now he is five. He said, "I don't feel five yet... I still feel four" When he was getting dressed this morning, he just couldn't really figure out why his "four year old clothes" still fit. After all he was FIVE now!
We celebrated his birthday low key this year (compared to a big pirate ship last year)... and we had a wonderful day. Honestly not once did it cross my mind that we are "going through something" with Mason. It was just a day to remember, or a day to forget. which ever!
I found the best cake for his allegeries and it turned out wonderful! I made it last night and had a lot of fun decorating it. (don't laugh....artist I am not! lol)
I also made some sugar cookies. Since we did a Spongebob birthday I had a squirelle cookie cutter, and did some squares and stars too. 
Aiden sure had a blast opening a few gifts....
And then blowing out his candles.. (all five of them!)
Aiden told me later this afternoon, as he was giving me one of his wonderful hugs, "Mommy do you know what I wished for? That you and Daddy love me more than ever!" I kissed him and said, "I love you more than ever!" and he smiled saying his wish came true. You know what? Know Aiden, that was really his wish. What a sweetie.
Of course I will admit it was nice to get my sweet boy back, the last few days he has been pretty cranky and not himself.. gee I can't imagine why. Funny how he is back to his normal self when he sees mommy and daddy back to ourselves. And we are (at least on the outside)
So after a fun day playing with his new toys and eating his cake and his cookies we were all tuckered out... and looking something like this:
(a few days ago...I found Spongebob in my bed with a wet wash cloth, and his blue baby tucked in under the blankets. Aiden told me that Spongebob wasn't feeling too well so he took care of him. wet washcloth and all!)
It was a good day and that was all we wanted!
Happy Birthday Big boy Aiden! Mommy and Daddy and brother love you so much.
XOXO
Upcoming this week:
Monday
9:00Am Mason has EEG (!!PRAY!!)
10:30Am Meet with the nuerologist (!!PRAY!!)
2:00 Pm Occupational Therapy for Mason
3:30pm Physical Therapy for Mason
Tuesday
8:30Am Occupational therapy Mason
Wednesday
8:30 Am Speech Therapy Mason
Thursday
8:30 Am physical Therapy for Mason and he gets his ankle braces!!!!!!!! YAY!
Friday
DAY OFF FROM APPOINTMENTS!
Love and hugs!
The Hawk Family!
Thursday, April 19, 2007 5:38 AM CDT
Mason Update
We are back from the neurosurgeon. The cyst on his cerebellum is tiny. It isn't the problem. I believe in my heart it was what allowed us to see a neurosurgeon so she could see what the radiologist missed. As she was looking over the MRI she showed us two very obvious white patches/ circles in the "wrinkly" part of his brain. Both sides. She left the room called the radiologist because the white patches were not on the radiology report. She came in to tell us that it was changes in the myelin. what is myelin? I knew some of this from biology and anatomy but this definition helps:
"Myelin is a sheet of lipid, or fat, with very high cholesterol content -- the highest of any brain tissue. The high cholesterol content allows myelin to wrap tightly around axons, speeding messages through the brain by insulating these neural "wire" connections. myelin is a key component of brain development through childhood and well into middle age. "
People with MS have problems with their Myelin. AT this piont, I am just waiting to see the nuerologist on monday, but I am thankful we went to the surgeon so she could see the white pacthes in his brain that somehow the radiologist missed.
from a surgical standpoint, we will see her in 3 months for a repeat MRI to see if the cyst on the cerebellum has grown, (it is tiny) and also to see if the demyelinization has continued?
But from here on out I think we the nuerologist has his hands full.
This is terrifying for us. This is a nightmare. Mason is our wonderful beautiful child. No matter what... He is our delight and joy. Pray for all of us as we continue on with this scary road.
here is a link to something about myelin disorders...I am not sure which is valid or good information. I just wanted to stick these here since I know this is all weird foreign stuff to us.
Myelin disorders and information
Monday morning he will have an EEG of his brain and the meet with the neurologist. After speaking to the nuerologist last week, he said, "I think there is more to Mason.. and we need to get down to the bottom of this fast" I have been slowing excepting that whatever this is we have going on, it is will be ok. We will be ok, because this is our wonderful child that we love. Maybe not exactly perfectly normal or exactly like the gerber baby or the parenting magazines tell you he should be... but he is perfect just the way GOD intended him to be.
sure I wish and wish and am jeolous FOR both of my children that they just don't have it easy. I am jealous for me... I wish I could just do the normal mommy stuff. I am sad for Joey...But wishes aren't real and that isn't what we have been dealt. It just hurts to dwell there.
instead I am just thankful for all we DO have. My wonderful husband, a happy marriage, and two amazing children with hearts that burst with love and joy.
Please keep praying.. maybe the prayer requests have changed, but that is ok... we just know we are asking for the best news possible at this point.
Now back to the important stuff: AIDEN's FIFTH BIRTHDAY! Off to make allergy free cupcakes and eat as much icing we we want! Love and hugs...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Aiden
Five years ago today You were the greatest gift I have ever gotten. I held you in my arms when you were born and I remember how chubby and beautiful you were. White peach fuzz looked like glitter on your head. Your skin was so red and soft. It seems like for a long time I was searching trying to get back those days before we knew you were sick, but those days never revealed who you realy are. Your bravery, your compassion, your strength.
At five years old you are my comedian, and my entertainer. You are my cuddler at night, and my grouch in the morning. I can always count on you to tell me where I said something wrong, but also to laugh at yourself if you said it wrong too.
At five you still love Thomas, and T ball. You now know all the jokes in your joke book, and you can read some of them by yourself. You have so many questions, that I love to answer for you. And even more questions I don't know the answer to. You ask about Heaven, and sickness, and scars. You understand that world in a way most children would never.
YOU MAKE ME LAUGH! You say the funniest things! I just love you Aiden. I love you so much. You tell me I am your best friend. But it seems everyone you meet also gets to share in that roll.
Happy Birthday BIG boy. Today is YOUR special day, no matter what we are learning about baby brother. Today I rejoice that it was ME God chose for you. People say to me all the time, "I don't know how you do what you do Lisa." But "what I do" is just be a mommy to my wonderful boys. I can't imagine myself NOT doing what I do. That would be the worst thing to imagine..anything short of that, I am thrilled to be a part of.
Happy 5 years precious boy....
Love you to the moon and back;
Mommy and Daddy and Mason
Tuesday, April 17, 2007 2:15 PM CDT
5:00 update...
I don't know if it is the celebratory glass of wine or if I just had the overwhelming peace from the Lord come over me, but I am now just SURE this will all be ok. I just have a feeling. A very good feeling.
2:15 update below
MRI RESULTS:
They think it is benign because it didn't glow when they did the contrast.
The said they prelim chromosones were NORMAL...
The think it is a benign epithilial or epidermal cyst located on the left choroid plexus
They think the cyst is made up of spinal fluid.
This is a huge victory so far.
We now need to know if we can remove this. I want him to walk and run and jump and sing and talk.
We see nuerosurgeon on thursday morning, please pray that we get simple answers that lead us to a miracle cure.
Prayer request number 1.. benign.. checked off the list.
Love and thankfulness, Lisa
Monday, April 16, 2007 6:34 PM CDT
Hello everyone...
Mason did great. It took them forever to do the MRI.. this one was two different kind of imaging.. They used IV contrast to see the "lesion" (I hate that word) at differnt angles and also took pictures of it in sections. They said it would be an hour but it was almost 2 hours before we could see our pumpkin. The wait was tough but he was no worse for the wear when we got to him. So darn cute, and lets just say he comes out of anesthesia A LOT better than big brother.
Speaking of anesthesia we had the same anesthesologist as I was complaining about last time.. lol he was just as odd.. but now I think he really DOES think he is funny. He said this time , "Beside his brother having Many many many many many problems.. is there anyone else?".... uhh one many was enough. Joey just said that he was dorky and trying to be funny but as a mom I think that there is nothing funny about any of this.... I think we are waaaayyy past funny. many many many many many times past funny. :P
So we should get results back in 24 hours or so, my pedi will get those results and then we will see nuerosurgery on thursday and then monday EEG and nuerology. I am in a serious daze lately, so if you are trying to reach me.. keep trying I am coming to.
I love you all so much. I can't tell you how many times I sit and read my guestbook and just feel strength and love. I wouldn't wish this on anyone but I do wish you all felt that feeling of support and love I feel. we love you all back... so much.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Now on to business... I have to adress something that I don't really want to adress right now but I need to say, that some of the emails that are in my guestbook or otherwise on this site are private. They can not be taken for public use and they are not to be shared. I have told by A LOT of people that there was a mass email sent and it looked like a SPAM email regarding "your friend lisa and Mason" praying and Jesus healing. I have emailed the sender of whom I do not know. Just to ask that they simply sign the guestbook if they have a thought, but not to use the names on my list. Also you may check the "do not show my email box" when signing.
I am hopeful this was an innocent mistake, and apologize to those who emailed me and were upset about the email. (many people have emailed me about this) I am really sorry. So anyway... this is NOT what I want to focus on... there are so many bigger issues than this...aka the tragic shootings in VA.
Go hugs your kids today, cause it isn't just sick ones that are precious.... they all are.
Saturday, April 14, 2007 2:08 PM CDT
Thomas was wonderful... It as just a beautiful day and Aiden I think was just the happiest kid there. Well that and 200 kids lol... But it was all we hoped it would be and more.
When we pulled into town the moms were the first to see Thomas... I knew Aiden would be seeing him right when we turned the corner and I wanted to catch a photo of him when he first laid eyes on Thomas... and this is what I caught
do you think this is the face of someone excited?
We all were just so exicted to be there so we lept out of the car (after a 2 hour drive) and immediatly Joey gets pooped on by a bird. Welcome Hawk Family! We couldn't manage to make a dark rain cloud hover over you all day so we thought this was second best
I more than anyone thought it was HILARIOUS that it was joey's shoulder.
Obviously riding Thomas was the highlight for the kids. I wouldn't book Thomas the Tank engine for it's first class comfort and luxery, but the kids loved it.
Joey and Aiden getting ready to ride!
Aiden on the train, looking out the window
Aiden, spencer, and sophie all looking at the scenery ... oh a parking lot!
I took this shot when he was sitting in my lap.. a self portrait...
After we got off Thomas we ate and played. Aiden found a FROG (I saw this as more than just a frog.. I saw it as a F. R. O. G. fully rely on God) 
Joey and I were impressed in the "Jack Hannah quality of how Aiden caught the frog" (shhhh don't tell the transplant team he held a frog!)
Over all I just had the best day. I wish we didn't have the news from the day prior in our heads. I would walk around and then it would hit me like a ton of bricks.. "something is growing in Mason's head" and then shake it off when I saw the belly laughs from Aiden. I definitly had real long moments where I forgot but the sudden rememberance was like a panic.
I am so glad we could have a day of joy like we had. I am so thankful my Aiden who will be FIVE years old this thursday got to do this. It was a wonderful time shared by wonderful company.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
So on the way up I scheduled Mason's appointment with the nuerosurgeon. This will tell us if the lesion is opperable (please God let it be!) I noticed it said the lesion was located in the Posterior Fossa on the Cerebellum. It just shakes me to the core to think that Maosn isn't walking or speaking because there is a lesion in his brain. I want him to walk and speak and I want this thing out.
Monday at 1:00 He has an MRI with contrast and a different way to view it. And then thursday at 9:00 we will know more. Thursday of course is Aiden's 5th Birthday, but Maybe the best birthday present will be that his brother has wonderful news about his health.
There are so many family members and friends and even strangers who have been so dear and caring. Calling and emailing. I love you all. I sometimes am having a hard time talking about this so if I don't call you back right away I promise I will soon. I think the shock is still in effect. I just can't believe that 'lightening' HAS struck twice in my home.
We are just having one of our lazy days.. feasting on popcorn watching SPonge Bob and playing trains. It is how I cope sometimes. Just watching the boys be happy.
Mason and Aiden were playing in the pillows like they always do and Mason tumbled off and landed on his back. His head ever so slightly boinked on the ground and I was sick. Does that hurt him? Is that BAD? What should I do?
I have had moments where I feel SOOOO thankful that I have chose to be the mom I am. I have learned that when your baby cries hold them. And when they want to be held "just because" hold them more. I am so glad I never was guilted into believing the parenting magazines that fussy babies or babies that a developmentally delayed can be JUST because they are never "put down"... THANK GOD... I just never put him down when he NEEDED me to hold him. When he looks off balance and we thought it was muscle... it was a tumor in his brain. MY GOD how he must be dizzy at times. How being held by his mommy must comfort him. THANK GOD I had Aiden to teach me that the GOOD moments like snuggles and love and being held are what being a MOMMY is all about! I am just so thankful I don't carry that guilt.. cause there is so much OTHER guilt I am having.
Anyway... change of topic because I am over that one for now...
I found this fabulous scrapbook at the Thomas thing. A beautiful Thomas scrapbook and Thomas papers. So today I am organizing and printing photos of Aiden and Thomas over the last 3 years.. and now pictures of Mason with Thomas on our table.It is so much fun and bringing me some real peace. Just a time to reflect on all the Good days.
Anyway.. pray for this little precious one for Monday. I have some photos of him at his last MRI
here he is signing "more" ( is that cute or WHAT?)
And here he is getting his "first" hospital sticker.
Thank you everyone for being so caring and thinking about us at this time. It is a shocking wild horrible thing isn't it?! i just feel like saying, " I just can't believe it".. but with all your prayers and support Joey and I will be able to accept at the right time.
We love you
The Hawk Family
Friday, April 13, 2007 4:49 AM CDT
I opened my eyes this morning and tears came out. I didn't even cry yet. It just knew I was sad. The tears were waiting all night, but my wet pillow tells me that they fell even as I slept.
For 1 week shy of 5 years we have fought for the life of our son Aiden. Today is a day we dedicated to joy and to reward and normalcy. Thomas the Tank Engine today. I just sit here and think, how can I feel joy, rewarded and normalcy today? I must not let Satan take this joy from us. Today is the day we waited for And because Mason had a fever yesterday his MRI was post poned to Monday. I guess maybe that was luck or grace or whatever. But we are going.
I just read my guestbook and think, all these people care? That is amazing, then why do I feel so alone? So I re-read your words and feel so comforted. I know your prayers are real and heartfelt and I DO beleive that they will work.
Today is a day where we will have joy, because "joy comes in the morning"... Keep praying and think these three thoughts:
benign
easily removed
with no long term damage
Thank you so much and we WILL make it through this. No matter what it always could be worse. It always could be.
Lisa
Thursday, April 12, 2007 11:47 AM CDT
Keep us in your prayers.. Mason has a growth on his brain. His cerebellum. I never expected a brain tumor. I never expected this.
Please pray.. Monday MRI with contrast of his brain and neck. they will splice it on the pictures and they will then see a nuerosurgeon.
Pray pray pray
"For I know the plans I have for you," declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
Thursday, April 12, 2007 11:47 AM CDT
Keep us in your prayers.. Mason has a growth on his brain. His cerebellum. I never expected a brain tumor. I never expected this.
Please pray.. Monday MRI with contrast of his brain and neck. they will splice it on the pictures and they will then see a nuerosurgeon.
Pray pray pray
"For I know the plans I have for you," declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
Tuesday, April 10, 2007 9:55 AM CDT
done.. we are done from all that scoping Aiden had to do. done done done...
He was perfect angel with halo attached even getting his IV.. he was charming everyone to peices and I was thankful that he was so cute cause it helped take my mind of the moron anesthesiologist and his comments... (aka "yes he is allergic to the_____ items and has had 19 anaphylaxises.." and his reply was "COOOOOOOOL" NOT COOL you moron!)
Anyway, it is done.. he had a paradoxal effect from the medication and went into a major screaming fit, ripped out IV, pulse ox tube, and then tried to bite the nasal canula.
I just signed my papers and everyone was very concerned, I was telling them get ME OUT OF HERE! I knew he just needed his bed, and a TV and some rice drink and just some comfy less scary place to rest.
And that is exactly what Dr. Mom ordered. And he is doing GREAT!...
The results were over all the best ever! I mean the big concern about Aiden is his history with a serious disease called eosinophilic gasterointeritis. Fortunatly Aiden is on steriods and immune supression which is how you treat this disease in rare and serious cases, but since he is already on it for transplant he has a double benefit from the medications. It is treating it and the scope looked good! (of course we are waiting for biopsy, but lets just say last time his colon looked like it had a million white bumps in it.. this time it was smooth and pink)
what this ALSO means to me, is that he IS NOT having any GI reactions to something he is eating that maybe he is allergic to.. which is WONDERFUL! (sometimes children can have allergic reactions that are ONLY GI and you can't see unless you scope and biopsy.)
SOOOOOoooooo That brings me to the upper GI the esophogus.. It wasn't as good. The dr. felt he had cellular changes in his esphogus and possible eosinphils there. The did a biopsy on that as well as biopsy on his small intestine.. by one nodule they found.
BUT we will get the biopsy results back in the next few days. Dang it.. that reminds me I need to schedule Mason's EEG.
UGH! I am ready for a serious relaxation day. SERIOUSLY.
SOOO speaking of relaxation.. it may not be MY DREAM.. but it is surely Aiden's. If you are old enough to have a dream, one that lasts for years, this would be it. Aiden is going to ride the REAL THOMAS THE TANK ENGINE on Friday.
It is called "Day out with Thomas." I can't tell you how many times Aiden has laid in a hospital bed, crying or sad and we talked about "happy things" and always always he happy thing is this:
"Mommy I wish Thomas was real. I wish I could ride on the real Thomas and Annie and Claribel. I wish The Island of Sodor was a real place for real boys.I think Heaven is the Island of Sodor."
I have stroked his head in some bad scary moments, and today was one of them. As he lay there sleeping with IV's and Oxygen and blood sitting on the corner of his lips, I said to Aiden, "In three days, you wish is coming true. IN three days you get to ride the REAL Thomas."
You have to know Aiden. I mean really know him to know.. this means so much. ANd I am so thrilled to see it happen.
You know, I often get questions from friends and family.. ."What are you going to do for YOURSELF Lisa? What are you gonna do to make some happy days." I just want to tell everyone. Stop worrying. Our days ARE happy. We have sad moments, and moments that just are NOT fair, but we have happy days. I think our days are sometimes HAPPIER than other people's days.
I was at the hospital yesterday and I was about to turn down a one way street by accident, but I caught myself. Well an onlooker was giving me the most horrible looks and waving at me like I had just ran over a deer. She was DISGUSTED with the fact I inched my car to the left 5 mm, so she took it apon her self to express this the only way possible... MEAN FACE. I was smiling and waving at her, cause it was my first response, "silly Lisa" but then I see she is STILL giving me the look of disgust. Maybe it was the Laurie Berkner playing in my stereo, but I just burst out laughing and mouthed to her, "Thank you have a good day"... You know why? Because we do. We have good days!
I am just saying, that there is one positive drawback to having seen the things I have seen and having it be my son who it was with. There is only one positive that I can think of right now for having a child that has coded in front me, and has been bagged and recusitated, and poked, and hurt, and bleeding and crying... there is one thing that is good.... and that is
IT HAS CHANGED EVERYTHING.
So go hug your kids today. I know I am typing this as fast as I can, so I can cuddle in the bed with Aiden.
Thank you for your prayers, and there will surely be an update soon about his day out with Thomas
Love, Lisa
Sunday, April 8, 2007 7:07 AM CDT
HAPPY EASTER!!!!!
I will make this short and sweet (is that possible?) Mason's MRI went exactly fine as it was planned, no issues with anesthesia. The actual MRI was over 1 and a half hours! (then plus recovery from general anesth) That is because it was brain AND total spine. Joey and I were a tad suprised at how long it would take, but it was fine. We were BLESSED enough to delight in the delicious hospital cafeteria! (this is sarcasm if you didn't catch that) After two pokes they found a vein and and got his IV placed. I took a few photos for Aiden, because he thought it was SOOO cute that Mason had a "baby IV"... and mainly that it was SOMEONE ELSE getting one.
They also did the chromosone study, CBC, CMP, Thyroid testing, and kidney and heart muscle testing.
I now have to wait for the next appointment with the neurologist and Mason will have an EEG on that day as well. I have NO CLUE how that will go since he threw a ten minute fit about wearing a hospital bracelet.. I am sure 20 electrodes taped to his head will not go nearly as well. (yikes)
It was weird coming with Mason. When we got down to imaging, Mason's nurse has known Aiden and known him well. I didn't know her, but she was telling me about how her father would eat at the "seminole family resturant" which did a big fundriasor for Aiden when he was pretransplant. She said her father ate there 3x a day and was following Aiden and very attached to his story. With tears in her eyes she told me that her father passed away last week, and she was just so thankful to hear how Aiden was. It meant a lot to see his cute little T Ball picture I had with me.
I of course was misty just connecting with this woman, and amazed at how small this world can feel. Then the anesthesologist sits down and looks at me and Joey and says, "don't I know you two? Do you have another son?" OK not THAT small of a world when you are in a hospital.
All in all we are no worse for the wear, it is now in our past. Some amazing friends offered to bring us dinner and I just can't thank you enough. Fast food is all we can seem to manage at times, so it was so helpful and heartfelt.
OK so the MRI is in the past....now onto the next obstacle, On tuesday Aiden is getting a total lower and upper scope. EGD and colonoscopy. We were going to go to Atlanta for this, but long story short, we are happy that we can just get this done locally. (there is way too much going on in our family to travel 8 hours to do something we can do here)It is mainly just a recheck (his yearly which is LONG overdue.) Aiden has a history of eosinophilic disease in his lower GI tract, as well as lymphoid hypersplasia, (which means lumpy bumpys in the GI tract) and reflux and ulcers due to steriods. SOoo... we will see how he looks on the inside.
The bad news is that Aiden will have to have NO SOLID foods starting tomarrow till tuesday. He has to drink a whole bunch of miralax so he "empties out" and also clear liquids. So juice, gatoriade, and popsicles all day tomarrow. So please pray that he is oblivious as he has been in the past, and that the liquid diet doesn't bother him.
OK folks... go enjoy this wonderful holiday and remember that Jesus is the reason for the season! Happy Easter!
Love, The Hawk Family
Thursday, April 5, 2007 1:51 PM CDT
Well tomorrow is Mason’s MRI and labs/ chromosone testing. When they called me to confirm today they went through the whole ‘fasting him after midnight speech’, nothing to drink after 9:00 AM story. I sat and listened and had to remind myself WHO this was for. This is obviously NOT my first rodeo, but it feels like it is. I thought about how crazy it would be to fast him for so long with out a snack (after midnight) and how frustrating it will be for him. Then (I SWEAR look at my caller ID) registration called me three minutes later for Aiden’s Scope on Tuesday. Talk about fasting. He can’t have ANY solids for 36 hours prior to his scope. He has to drink miralax and gatoraide for the entire DAY before his scope. Kind of puts fasting in a whole new ball park huh?
I guess because I have been to the rodeo (with a different horse), I am supposed to be calm and logical and not worried about my youngest baby going under general anesthesia for his first time. I guess I have to follow the “super mom” rules that seem to have magically fallen on my head. I guess I am not supposed to cry when they try to place Mason’s IV in his tiny totally un-scarred arms. Well who says? I know no one reading this expects any of this from me.. so why do *I* expect this from me? Why is it that I feel like I don’t give myself permission to cry my head off that my baby is going to be getting and MRI of his head and spine to diagnose some kind of nueormuscular disorder?
I keep telling my eyes to just CRY darn it. But the old scars from the last few rodeos have toughened my skin. You know the skin, the outside stuff…. Not the inside stuff that is hurting and terrified.
here is Mason waiting for PT to start
self portrait of mason and myself...at PT
My little Mason has been doing tremendous in PT. He gets to wear this HILARIOUS vest (kind of like a stiff west suit) but it makes him look like superman. Aiden was in the waiting area with me while Mason was with his PT Kim, and when Mason was walking around the corner holding just a baton with his super man vest on.. Aiden and I looked at each other and just burst out laughing. It was a sight, with his little arms raised up in the sky and his blue suit on.
Kim told me that Mason is doing tremendous though… he even stood on his very own for FIVE seconds!! And then plop… which was followed by a delighted squeal. I can’t wait to see him get his ankle joints supported because I know he will be taking off then.
I really appreciate those who have emailed or signed my guestbook. I know it is just some words to you, but to me and Joey it is our support. It means everything knowing that people care, and are praying.
I will keep you all posted when we know more, but in the mean time.. keep this little precious one in your prayers tomarrow. Pray that nothing bad is found in the labs they are running, or the MRI. I am sure it will all lead us to the same conclusion we have always known… Mason is just Mason… especially cute, cuddly, and sweet.
Love
Lisa
Ps/ Please pray for my Dad. His bladder cancer has come back again. They tried to do some testing buut his creatine was too high for the contrast. Thank you!
Friday, March 30, 2007 8:00 PM CDT
I feel semi speechless at times when it comes to Mason. SOmetimes it is like the whirlwind that just won't stop blowing. The other night Joey said to me, "Lisa maybe because we never got to enjoy the baby time with Aiden, God gave us the never ending baby..."
Mason had his OT evaluation. OK so.. I mentioned to a friend or two (both nurses) that I am sure he will be too young or just not needing OT, they both scoffed because they knew what I was about to find out was... OT is the missing link for Mason.
Where or where to I begin? Or maybe I shouldn't maybe I should just wait one tiny more week for his MRI of his spine and head. I don't know. But here is on interesting tid bit I learned...
Mason has low tone all over his body (nothing new) but HIGH TONE in his right scapula, shoulder and rhomboid (rhombus? or something.. isnt' one of those a shape?) anyhooo.. that is very indicitive of mild Cerebral palsey, which of course if he has I would have to learn to say and spell properly. His nuerologist and others have hinted at the mild CP now for over a month, but I thought it might have been thrown out the window when the talk of chromosonal tests and EEG's came about. so we will see... it probably would be a good case scenario.
Mason also has his hand in a "posturing position" as well as does not use it often or well.
Other things that were mentioned are just so complicated and tough for me to talk about yet. But in the mean time we have now gotten our full Mason schedule and here it is:
Mondays:
8:30 AM speech
2:00 - 3:00 Occupational Therapy
1/2 hour break
3:30- 4:15 Physical therapy
Tuesday:
9:00 Am Occupational therapy
Wednesday
8:30 AM Speech
Thursday
8:30 Am Physical Therapy
FRIDAY DAY OFF!
Mason is also getting fitted for BI-Lateral orthotics next week!! That means two feet will have ankle braces. He will get them in a few weeks. ( I am sure they will be as precious as his little feet are!)
I will say this.. Mason is KICKING BUTT in therapy! He is a super star! (well maybe not.. but so much better) He usually comes and starts to flip out the second we pass the waiting room, but now that I am leaving the room the tantrums are shorter and he is really trying hard. He is walking with some much lighter assistance. He has major balance issues, and control issues. But he is getting a lot more endurance. All of this work exhausts him, but it is worth it long term.
I am just coming to terms with all of this. I look back on my pregnancy and remember my high fluid levels: (polyhydramnios) and know now that the most common factor with polyhydramnios is central nervous system disorders. This is what Mason was diagnosed with by his nuerologist. I think about how I used to call him my "noodle" or my "blob" or even my "good baby" who would just sit and watch for hours.
Hind sight in Mason's case has been stinging and difficult. But I know it is the only sight to have because of his age.
The OT stated today that for every single thing he has been tested for and evaluated for he has fallen far below the bell curve. on everything. even social. Ouch. Ouch ouch ouch.
So friday nights have changed in the Hawk House... it used to be family night and Tv and popcorn.. now it is watching SIgning time dvds and learning sign language. You know we look like a bunch of weirdos from the street, if you are looking in at us. Me Joey and Aiden all signing silly things to each other. Mason just sitting and smiling, while we all do it for him.
I will update later.. but for now I am going to go enjoy my weekend.
Love,
Lisa
Tuesday, March 27, 2007 7:45 AM CDT
Signing Times is my new favorite thing. It is the DVD series that is allowing me and Joey to learn sign language so we can see Mason's speak. Mason has no words yet. No "Mamma" when I walk in the door, No "Dadda" when he sees Joey. Nothing. No BBbbbb.... orr DDDdddddd... or anything that sounds like an association with anything. He can babble, but nothing attached to any object. The only thing we hear from him is Choo Chooo, and he hums the "I Love YOu" Barney song. I know he is so smart and just has so much on his mind everyday, and finally we are unlocking all of it with sign language. I know eventually he will talk and he will speak sentences around me, but for now, I can't tell you how it breaks my heart to see other kids just fly past him in so many ways.
The story behind Signing Time seems so similiar to mine. Although it techinically has nothing in common other than the emotional connection, it just speaks to me. (and obviously millions of others) Their first child was born deaf. They take this and create this amazing education tool that has taught so many children sign language. When they were pregnant with their next baby they thought for sure it would finally be their time to relax and have it easy... and the baby was born with Cerebral Palsey and Spina Bifida.
So there is this song they sing, and it breaks my heart and it just showers me with hope at the same time. I just wanted to put the words here and share it with you.
"Show Me A Sign"
(written by the creator of Signing Times:
Two years after Leah, we planned our second child. I imagined sunny mornings with our new baby, while Leah
attended Preschool. Hearing or deaf, this would be so easy! Our 18-week ultrasound showed our new baby had
hydrocephalus and spina bifida. “Easy” slipped right through my fingers. Lucy was born and we found something
better than “easy.” Suddenly we found something to celebrate every single day!
At 2 years of age, my daughter Lucy had no words and no signs. Lucy has spina bifida and cerebral palsy, both of
which affected her ability to communicate. Her doctors cautioned that we should be prepared for Lucy
to be diagnosed as mentally retarded, unless she could show them a sign that she wasn’t. I wrote this song
as a prayer; a prayer that Lucy would prove her doctors wrong—she did. She is the first “Signing Time Miracle.”)
How are you doing little one?
My little one, my little one
I’d like to know what’s on your mind
Our days together, time together
You and me, our one on one
These are the times that make me smile
You make me smile
Tell me that you love me
Tell me that you’re thinking of me
Tell me all about the things you’re thinking
Day and night, both day and night
Tell me that you’re happy
And you love it when we’re laughing
Tell me more, oh, tell me more, show me a sign
Show me a sign
Every day you grow up more
And teach me more about what I’m here for
And every day I love you more
I love you more. I love you!
Tell me that you love me
Tell me that you’re thinking of me
Tell me all about the things you’re thinking
Day and night, both day and night
Tell me that you’re happy
And you love it when we’re laughing
Tell me more, oh, tell me more show me a sign
Show me a sign—show me a sign—show me a sign
~~~~~~~~~~~~~~~~~~~~~~~~~~
Just like a Baby's first word's I will never forget Mason's first Sign. It was "play". Of course it was. Now Mason offically knows 5 signs and has imitated about 8.
For me, I know it will get there, he has done so well in PT already. Speech starts next week, and his OT eval is this friday. I just have my own little selfish prayer, one that I say every night when I go to sleep, and I don't mind sharing it here:
I can't wait to see my Mason RUN (or maybe just walk)across a room calling me Mommy... I am praying it will come soon, cause I just can't wait.
Lisa
Ps/ Prayers for my Aiden. He had a terrible allergic reaction yesterday and even through the night he couldn't rid himself of al the hives. His steriods are trippled, he is on Atarax, and benedryl around the clock.
Thursday, March 22, 2007 3:20 PM CDT
OK folks this one is a long one... get in your comfy chair and be prepared to take a moment.
ON tuesday we woke up early to get Aiden's labs and Mason's hearing appointment. The day started out normal, I got the boys in the car and while I was chatting with my friend on the phone, Aiden decides to share with me his dream from the night before. He does this almost everyday, and I love it. His dreams are usually hilarious versions of our household or some great episode from his cartoons. But this was different...
"Mommy I dreamt about Haley last night"
I freeze, and my friend hears him as well and she freezes. This is the third dream he has had of Haley.
"I was sleeping in your bed and Haley knocked on the door to the room. I jumped out of bed and stepped on the clothes on the ground, and I opened the door. Haley was there, and we hugged and hugged. She hugged me and told me that she didn't know I was getting labs but she was going to come with me. Mommy, she said she was very happy!"
"Se was silvery like Nemo and her hair was long. I really miss Haley. But I think she is on the Earth because she said she is with me!"
Now I am sure some people may think I sit and talk about this stuff with Aiden, but I don't. I don't fill his head. The Love Aiden has for Haley is HIS love. All on his own. He remembers her singing with him, playing in the snow, playing games with him, and his love is a pure love of a child.
Of course he hears me talk about Haley, we have pictures of her here at our house, he cuddles one of her little stuffed animals she gave him, her memory is alive here. But these three dreams he has had of her, have always been out of the blue, and on days where... well... lets just say it makes sense.
So... with that said. My friend on the phone and I just sighed and got a tad emotional thinking about how God just loves us so much that He sends us comfort even when we don't know we need it.
I arrive at the hospital and Aiden, Mason and I head into the lab. Once in there, Aiden's old charge nurse for 3 south was there! It was so neat to see Nurse Janet! What an amazing woman and friend she was to us when Aiden was pre transplant. We caught up and Aiden played video games waiting to be called into the room.
Once he was getting his labs Aiden was SUCH a big boy.... he sat all by himself and asked me to "video tape" him. I snapped this little picture:
She got the stick (barely) but she got it, and we were off. I stopped to say goodbye to our nurse friend and Aiden in the midst of skipping freezes and says,
"Mommy I have bad news. I am sick"
And with that I see my once skipping boy; pink and normal, turn ghostly white and close his eyes. Aiden passes out. The nurses run over and I grab his blood pressure cuff. After three tries we can't get a reading on him. I pick him up and and put him on the couch and he is awake and pale and sweaty and drowsy. All he could squeak out was "are you going to epipen me?"
They told me to take him to the ER, but I knew we just got labs and that is ALL they would do in the ER. I was kind of glad we JUST minutes before had labs so we could see if it was glucose or what on Earth caused it this time. I told them he has a history of syncope (fainting) and that he just needs to perk up and I will call his pediatrician.
After some Oreos and 7-up Aiden looks fine and has all his color back.
I am a mess by this point, Hands shaking, and probably about to pass out myself, but he was ok. SO I decided that staying on the hospital campus was probably a good idea, and just went to Mason's hearing test.
Mason's hearing test.
So have you been to an infant hearing test? I have. I have with a very different personality. Aiden is my entertainer. Mr. social, even when he was 18 months like Mason. Mason is my gentle baby. Sensitive and cautious. So here we are in this room with three toys in boxes and two speakers. As each speaker makes a tiny noise the toys above it will dance or bang if Mason turns to look. It is supposed to be a "REWARD" if the toy bangs or dances..... And yes when Aiden was 18 months and he was tested in the exact same room.. he clapped and waved and talked to the dancing toys.
My cautious child... Mason...
freaked.
SOOOOO did he pass the hearing test? I have no clue. He passed one ear, and possibly failed the "middle ear" testing on his right. They coudn't even begin to touch him with the inter ear camera or the weird vibrating thing, because he was too busy trying to get away from the scary Big Bird toy.
So.. this prompts the tech or audiologist (or whatever she was) to just diagnose him with autism. yep. You read that right. this is how it goes:
"OK so.. he has hypotonia, devlopmental delays across the boards, he obviosly is having a hard time calming from sensory issues... I suggest you see THIS (and she hands me a name and number) doctor. She is a behavioral pediatrician (who specializes in autism) and she will welll...just tie all the pices together. I mean, it is obvious Mason has some .... diagnosis... and well she can help."
Huh?
UHHHH
can he HEAR?
ISN'T THAT WHY I CAME HERE????????????
I felt like the cartoon characters with the steam that pours out of the ears when they have hit their limit. I have HIT MY LIMIT!
So after I restrain for killing, I smile and leave and take my boys home.
Aiden's first part of his labs came in and I notice his creatine was elevated, and my heart sunk. This is a kidney function, and just never thought it would start going up so soon after we found out about his kidney issues. I knew I had to call the transplant team anyway since Aiden passed out this morning.
I call Atlanta and as I am leaving a message with the hepatologist my phone rings and I get a message on voice mail.
"Mrs. Hawk, This is chemistry calling from All Children's Hospital. We need to have you call us back immediatly. ONe of the tests run on Aiden came back in "critical levels" and we need to know what physician to call."
Uhhhhhh.....
WHAT IS GOING ON?! For the second time today I am feeling my heart pound out of my chest. I immediatly know it must be his prograf level. I call the chemistry number and they tell me the can't tell me the prograf level over the phone, but they will be faxing it to me as well.
THEN...My cell phone rings and it is our transplant team's hepatologist calling. "Hi Mrs. Hawk, I tried to call the other line but the fax is on. Lets talk about what happened with Aiden and his labs... "
The fax comes in.. I tell Dr. R to hold on one second while I see the prograf level, and I see it and say out loud: "well I bet I know why Aiden went unconscious today and why his kidney numbers are up... His prograf level is 37.8"
37.8
And that in a bog long drawn out nutshell.... was was our Tuesday.
Maybe you are reading this and you are wondering what the HECK is a prograf level of 37.8 mean? Prograf is Aiden's main immunesupression drug. It is the craziest drug, it can climb high or dip low but if it gets too high it is nephrotoxic and nuerotoxic (bad the for brain and kidneys and heck the whole body) IN any case let me just add that before I KNEW it was nearly 40... I then gave him ANOTHER DOSE!!! This means at his peak I am sure his prograf levels were so toxic that it is a wonder he was having a seizure or worse.
So another few hours on the phone the day ends and all is fine..... I am getting ready to lay my head on my pillow, although it is aching and throbbing, I suddenly remember the first hours of the day and the sweet dream Aiden told me.
I know in my heart that God does watch us. That he is with us. That he send us moments of comfort. Maybe for me comfort is in a friend's words or a scripture, but to Aiden... a day where he needed comfort before any of us knew it, God comforted him with a dream of a happy, silvery shiny girl with long hair.
God is good... He is so good.
Monday, March 19, 2007 11:58 AM CDT
So I was praying for calm... but instead we got stomach flu.. ALL of us except Mason. Aiden managed to NOT be admitted (which then I felt launched me to super mom status).. It was a night to forget...as Daddy and Aiden were throwing up in synch in the middle of the night on friday... then little Mason wakes up from the excitment and I am on the phone with Aiden's doctor thinking... CALM I said.. CALM!
So we are all recovered and doing fine.. no one has been sick since friday night Phew... Nothing like bleaching my whole home to keep my mind off of the things.
IN trhe mean time things are good. We are settled and doing fine. Spoke to the pinellas county school board today about Homebound for Aiden. Still haven't figured out what I will do on that. Probably just homeschool with out the school registration, but I am still thinking about my options.
Aiden gets labs in the morning, (holding off one more day just in case they decided to bump from the yucky tummy bug) and then Mason has his audiology appointment at 10:00. SO... They both get to go to Toys' R US and get a little something.
We have Mason's schedule thus far:
Monday 8:30Am Speech
Monday 3:15 Physical Therapy
Wednesday 8:30 Am Speech
Thursday Physical Therapy
He is getting his Occupational therapy eval and that I am sure folks will shut me up forever... No more saying "I don't do anything all day"... Geesh.
In the "good news" front Mason has learned 4 signs!
More
eat
play
all done
It is precious, adorable.. sweet litte bugger, eat him with a spoon kind of cute!
Aiden on the other hand has learned a million signs and now has ceased using words and just signs to me... Unfortunatly these are of the "Aiden language" and I get to stand there confused while he is dancing and slapping himself in the head. Nice... SPEAK CHILD SPEAK!
SO enough from here... I will update and let you know if Mason has a hearing deficit or "ignoring me" runs in the family... (rolling eyes)
Love
Lisa
Friday, March 16, 2007 1:04 PM CDT
ok ok... enough of that sad stuff... moving it to the journal history. Oh wait.. it isn't that easy?? Oh DRAT!
Right now Joey and I are planning on spending some special time together with the boys, just being a family and enjoying all we DO have. Which in my estimation is a lot. We have our sense of humor and of course love, and each other.
Aiden has a T ball game in the morning, I am coming off a serious bout of stomach flu (or food poisoning?) (or nervous breakdown? haha???) so tomarrow I will leave the house for the first time since the bad news about Mason. I am hoping for a sunshiney florida day to perk us up and get us moving.
I can't tell you how many tears I have wept over the precious things I have been emailed and the things you wrote in the guestbook. I can't tell you how much having support has gotten us this far. SO many of you I haven't met, but I know you and your children so well from caringbridge. Wow, how this little world can pull us together. Thank you for being there when we needed you, and hang in there... I just KNOW we are gonna have a big fat miracle soon. You won't want to miss this!
I guess I only have room for an Aiden brag... my other miracle. The main story line here on this site... Aiden read his first book today. It is called "fat cat"... and when he stuck it in there with the first word "fat" he laughed and laughed. And then looked at me and said, "Mommy reading is SO fun!"
I know Mommy's say it all the time and I just don't know when we will ever stop, but I keep thinking when Aiden hits a new stage.. "THIS is the best yet!"... and then I look at Mason and I think, but "THIS is the best too".... I am just so happy to be the mom of these two boys and I just love all the things motherhood brings me. I wish the pain was something we could forever eliminate as mommies... one big band-aide, but I have learned that with Hope and prayer and some really good friends we can get through the bad just in time to see the good.
So maybe staying in my PJ's since Tuesday may seem "unhealthy" but I got to see Aiden read his first book and I held my Mason the entire time.
Thank you for being there... please continue to pray that God is revealing His plan and it doesn't have much to do with any hospitals and more drama. Pray for CALM... PEACE...well you get the picture.
Love,
The Hawk Family
Tuesday, March 13, 2007 8:05 PM CDT
So we went to the Mason's appointment.. It didnt' go exactly as I had hoped. Infact he was pretty sure it wasn't muscular that it was indeed central nervous system issues.
At this point I am just not in the mood to get into any detail. He will be having an MRI of his brain, and spine. then he will be having an EEG and lab work. The lab work is CBC, CMP, CK and CS... chromosonal study. We will then "go from there".
In the mean time we will also just continue on with PT and now OT. We are on a waiting list for speech. I am signing to him all day, which is adorable. I am just gonna love him and kiss him and just be normal.
I am sad; and angry; and feel like I just got crapped on by a big stinkin' bird. But Joey and I will get through this and anything, because we have faith and God can guide us. And nothing will ever shadow His Love from us.
selfish request: Please pray that some medication magically appears at my door.. you know.. the "happy pill" and I am just in a blur until this week of test happens. (which of course in perfect Hawk Fashion is on Easter Weekend.)
Still F.R.O.G.-ing
Lisa-
Mommy to the most perfectly amazing wonderful brothers you ever have known. Both with big wonderful hearts and the best smiles in the world! I am so proud and lucky.
Monday, March 12, 2007 8:05 AM CDT
I can barely see my computer with my puffy crusty eyes this morning. Did anyone watch Extreeme Makeover Home edition like I mentioned?? It was about a donor family?? If you missed it... you missed something so powerful I have no words.
If you got the chance to see it.. please sign my guestbook and let me know what you thought. thanks!
In other news, I am sad this morning because a long loved child from Miracle Mail has passed away in the early morning. Keep Angel Kelly's family in your prayers.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Monday Update:
I wanted to keep this update brief.. for fear I really sound like a whacko. Or I might really step off that deep end that seems so dang close to my toes right now. Tomarrow is Mason's nuerology eval to see if what is going on with his muscles is JUST Muscles or if it is more than that. JUST muscles is already enough for me to accept...At first the HYPOTONIA diagnosis was something I really blew off. But now, I see this isn't going away next week. BUt just keep him in your prayers.
We did get a speech eval done and here are some of those results:
With the Rosetti INfant Toddler Language Scale
He was diagnosed with
"EXPRESSIVE LANGUAGE DISORDER"
at a moderate level
scored at 6-9 months of age
decreased vocal/verbal imitation
Impaired verbalization of intent
Reduced expressive vocabulary
also
"RECPETIVE LANGUAGE DISORDER"
scoring at 9-12 months
reduced understanding of age level concepts
reduced understaning/processing of age level instructions
reduced understanding/processing of age level questions
Under that and more information about where he was delayed it says:
Stregths:
Parent support
OH and he is cute! And you should see his smile! And man oh man he loves his momma. Boy those blue eys are killers.
Oh wait..that is NOT what it said. That is what I was screaming when I read this.
The plan of action is way too long to retype but it also mentioned
"presents with decreased mouth opening when vocalizing" and "does NOT resily imitate words. Does NOT say "mama" or "dada" meaningfully, does NOT imitate a variety of non speech sounds, and does NOT imitate the name of familiar objects. He does NOT readily identify body parts he does NOT understandsimple questions, he does NOT point to actions in pictures and he does NOT understand some prepositions.
But again it says:
Strengths:
Parental involvement
Did I mention he is my snuggle bug? did I mention he loves trains like his brother? DId I mention that this seems all too ridiculous to be happening to another one of my children? That I thought it would all be just perfect? That I thought it would all be fine and we would never see his name as a regerstered patient at All Chidren's Hopspital. that I thought we just "bought" ourselves out of any bad luck with Anyone else for the rest of our lives for all the pain we have watched Aiden endure? All the hell he has been through and all the uncertainty that lays in front of Aiden?
I am reminded by one of my dear sweet friends who knows this world well.. that if he has some hearing loss it would explain all of this. SO he sees a pediatric audiologist for a screening on the 20th.
Please pray for us tomarrow. It is my birthday and I just want a really sweet present for my baby boy at his nuerologist.
FROG
(fully relying on God)
Lisa
Wednesday, March 7, 2007 8:39 AM CST
Do you remember THIS:
(it is a poem I wrote to Aiden about him and his brother Mason...I wrote it when he was 6 weeks old the same age Aiden was when he had his Kasai and his diagnosis. I remember looking at Mason and holding him and it all sinking in. All of what I had missed, all of what I had seen with Aiden at such a young age.)
6 weeks and 3 days
Looking at Baby Brother
I discover a hidden secret.
So small and helpless,
Can’t even hold his head up yet.
What was I doing,
When you were this young age?
Was it watching you coo?
Or Making you safe?
I think back with sadness,
I feel I CAN do that now,
You got ripped off my little one,
I see we both missed out.
I count biopsies, and needles,
Parents who were not there.
We were busy crying and grieving
Things we just could not bear.
Behind a hospital mask
They say your name.
“Just a minute more?” I ask.
“It’s time to go”, they say.
How do I hand you over
To someone I don’t know?
This wasn’t in the parenting books!!
I just can’t let you go.
They said if it wasn’t THE disease,
Surgery would be finished in minutes.
Hours go by………..
I have learned a new emotion.
I feel something for the first time, it is hatred.
It wasn’t for a person; it was to a thing.
A disease called Biliary Atresia, I hated that name.
Aiden, you are loud and laughing as I write this.
You are full of life and God’s Grace.
In the past three years,
I learned another new emotion
Some call it acceptance,
But I call it FAITH.
Thank you, Baby Brother
I didn’t know until today.
You showed me a secret,
What I should have been doing that day.
He is 6 weeks and 3 days old,
just like you were
He has no scars,
He has no pain.
I am sorry my Big Boy
You ever had that day.
Thank you God for showing me though,
Just how it SHOULD be at this age.
~~~~~~~~~~~~~~~~~~~~~~~~
Now here I am Mason is 18 months old and I did it again. How on EARTH is it possible that I made the same mistake TWO times?? I remember being pregnant with Aiden and thinking I was having a Gerber baby like we are "supposed to"... and then no Gerber baby. For years I told people this story about how shocked and sad I was when Aiden was born sick. And then like a fool... with out knowing it... I did it again.
I just wanted to thank thank thank those few that have really been there for me about Mason. I had no idea I even "needed" anyone to BE there for me. (seems ridiculous really) But it slowly is creeping up. And I did need it. You know who you are, and thank you sweet friends.
The irony of it all.. my Sick child looks like a million bucks... and my healthy child... well lets just say he looks like a million bucks too.. but about a 9 month old million dollars.
Also words of advice to those who just don't know... if you see someone at the park with a very capable baby who can climb everywhere with his arms and slide down slides and you think the mom is ridiculous for letting the '9 month old' do all that.. DO NOT SAY ANYTHING TO THEM... and wipe the look of horror off your face please......because he isn't 9 months... he is a toddler in his mind. Enough said.....
Mason will be seeing a neurologist next week to make sure there isn't anything nueromuscular going on... I doubt there is but they wanted to make sure. Keep him in your prayers.
Oh and his Big brother you ask???.... well lets just say he is doing wonderful! Wonderful wonderful.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
IMPORTNANT INFO:
I just HAD HAD to tell you all about the very moving upcoming Extreeme Makeover Home Edition episode that is coming up. The family is an ORGAN DONOR FAMILY and they will actually meet a recipient of their son's heart on the show.
Please tune in on Sunday at 8:00 for this show! (ABC)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I also wanted to link you to Cheryl's page (gee never done that before)... she has some links on there for some children who really could use some prayers. Especially Kelly who is earning her angel wings ...
Thank you for checking in on our family...
Lots of love,
The Hawk Family.
Tuesday, February 27, 2007 6:45 AM CST
We dream in LITTLE dreams... not the big ones.
T ball yes it is just a little dream, but it came true.
Saturday was the opening season for the T ball and little league. It was precious precious. The kids all had to parade onto the field and the have their opening ceremony. I actually have no clue who that first little kid was who stepped on the field, but the waterworks started flowing.
There I was, like some tourist. I had camera (yes we found it) in one hand and video recorder in the other. I kept muttering things like, "this is so cute." "I can't believe we are doing this"... And I know some people who heard me thought I was a tad dramatic. But it wasn't till I was crying like a fool when I started leaning to my right and left and whispering to people , "He just has been sick.. and I just am thankful"...
Oh yeah that explains it to perfect strangers I am sure. Sick with what? The flu? Wow lady, get a grip.
But you all know. No not the flu.
It seems like I just had to say, I am just so thankful he has made it this far.
I am
i am just so thankful he has made it this far. I have faith he will make it very far and God will protect him, but I am thankful he has made it this far. It is a miracle.
So back to opening day. Joey is Aiden's asst coach, and I can see him out there. I really wanted to share in the moment with him but I was just so glad that Joey got to have his own moment with his son.
Watching Joey hurt over the years with Aiden's illness has been so difficult for me. When things go bad or we have some rough patches, my heart breaks that Joey doesn't have the privledge to break down, and stop for a moment. He always has to work, provide and be the strong one. I will never forget when Aiden came out of his Kasai surgery and the way Joey sobbed. He cried so deeply, and I felt so helpless. I felt my heart break in a way that never healed, and when I saw Daddy sitting out on that field with Aiden, I knew it wasn't the same moment I had in the bleachers, but it was his own amazing moment.
Does Aiden like it? you ask. Um lets just say...
YES!
Last night was Aiden's first game. Again precious. All the little boys on Aiden's team are just sweet natured children. It was hilarious to see the dad's have 12 little 4 and 5 year old lined up on one single bench. Those little cuties all ready for their first time at bat. The game went with out a hitch, no crocidile tears or sad kids. When it was all over, I asked Aiden if he made any new friends and he said, "YES! but I don't remember all their names. But can I invite my team to my birthday party?!" I was so glad for him. I loved watching him on the bench just being a kid with all the boys.
Just being a kid.
I pray this season we don't have to have any admissions to the hospital, that he can finish the next two months out with out problems. I pray the few scattered peanuts I have seen don't cause a problem, and that this just gets to be the time where he has a normal life.
Oh how I hope that when there are mom's reading this site who may have little baby boy's waiting for liver transplant and wondering what their child's future may hold, that they see this smiling little boy and know it can hold great things. It is a future of Hope. I know there are several little baby boys at our support group that tug my heart deeply reminding me of my Aiden. They are so sick, waiting for organs to give them a second chance. I hope you know I am praying for them. I am praying and hoping to see them grow older so they can have their "little dreams" come true too.
In honor and memory of Aiden's donor family
Thank you.
Love, Lisa
Wednesday, February 21, 2007 8:05 AM CST
Question:
What happens when a 4 year old boy, who loves playing with cars, grows up????
(Nascar guy on left, Best buddy Jason in middle, Joey on Right)
Now which one of these three men are the professional Nascar Pitt crew members?? No it isn't Joey... although he seems to have the "look" mastered.
SO we are doing Mason's PT at home, and sign language and Things are moving right along. Mason seems happier with all the attention, and man it made me realize all the attention a "first" child gets. The second little one, ohhh well it just isn't the same. So now All the signing, and playing, has just made for a very happy baby. Ok so slighlty spoiled or even rotten child, but I am glad to hear the gutteral screaming at a minimum.
SO this week is a BIG BIG week for us.Drum roll.... Aiden Joseph (or use his Tball nick name AJ) will begin TBall this week! He is on the "T Rays" sort of like the Devil Rays (our local NAL team). And his coach is... drum roll.. DADDY! Of course.
ok let us re-visit: 
This was last year when Aiden was having a lifetime of "spring training" we found him all decked out in his T ball socks, batting gloves, sweat bands, etc... and just his whitey tighties... Yes yes I know you have seen these shots a million times, but maybe there is someone new at the site that hasn't seen them? ever think of that? :-P
Anyway the camera is still lost, so you get what you get.
So T ball this week. we got our schedule and honestly it is pretty insane. Games all the time. How do kids that have school DO this much activity? How did I as a kid? I remember Brownies, gymnastics, swim team, tennis, cheerleading.. of course my dad was the Director of recreation in our town, but still. This is a lot of commitment.
We are just so excited though that T ball is here. I love to see Aiden play and practice. And you know it all goes back to... let's say it together.... Organ donation. Sometimes I wish I knew the family so I could thank them every single morning and every single night for my Aiden. And everytime we hit milestones and live normal life, I always think of them.
Organ donation is the topic that we are covering at our new BLOG at the foundation. We have added a blog at our site
www.thehaleyvincentfoundation.com
The blog's page is directly at:
www.thehaleyvincentfoundation.blogspot.com
Cheryl and I will be doing topical blogs every monday. Sometimes even having "guest bloggers" discuss their view points on different topics that effect the families that recieve Miracle Mail or Angel Hugs. The blog will also have information about meetings, fundraisors, and other ways to get involved. Currently with organ donation being our topic this and the next few weeks Cheryl and I obviously will be talking about it from different perspectives, but both perspectives that can help educate ourselves on this incrediable need.
I hope you check out the blog and head over there every once in a while to see what we are chatting about. We will also be having a "links" page with kids who have received miracle mail so you can read about them, sign their guestbook, and support those families. SO many of them!
Keep little little little Sasha in your prayers. She is still waiting at the top of the list for a new liver. She is hanging in there but needs the Gift of life desperatly.
Also Continue to pray for Kelly and her precious family.
God bless and have a good week! I will have a camera one way or another by T ball.... so stay tuned!
Love the Hawk family!
Friday, February 16, 2007 8:10 AM CST
Saturday update:
Mason's CT Scan was NORMAL! Thank you for your prayers!
Normal normal normal.... love it.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Friday update:
Let me start with my darling Aiden. He is doing very good! The itching and the little scabs are so much better.. basically gone. His red ruddy skin looks so much better. And all thanks to the wonder drug.. prednisone. OK so we hate to give him extra but this flare was getting out of hand. So his docs said.. Double that dose!.. and follow his blood pressure. He did great! Thank Goodness. And since my two boys already believe in silbling rilvary… I will now segway into my story about yesterday:
SO we had a lucky day yesterday… as I was procrastinating making Mason’s speech eval I finally decided ok, just call. Once I got through they told me that they had nothing open until April… pause.. well except “today at 1:00”. OK switch gears, sounds like a winner. I find out that I am fortunate enough to be evaluating with Aiden’s little friend Hannah’s speech therapist. I mean coincidence? I think not. This woman already mildly knows about my family, and I already know she is valid and not just some one I can deny knows her beans.
Now speech is gonna throw you a loop.. I mean it totally did me.. but here is the deal. When you have hypotonia in all your muscles you also have hypotonia in your mouth muscles. I know, I know what you are all thinking (maybe not all) “MY child didn’t speak till….” I thought the same thing. But I guess it is different, because unless he learns how to USE those muscles.. he would be incrediably delayed.
So we went to the eval….and he scored at 11 months old. It didn’t sting so bad as the 10 month old PT eval. She was super nice and explained so much to me. I really understand better what we are talking about. So now we are teaching sign language to help him “speak”.. she said he will learn his signs faster than he will the words. She said that the signing serves as one obvious goal.. communicating what he wants/ needs or what I want/ need with out him getting too frusterated.
Over the past month or so Mason’s new noise is.. AHHHHHHH a gutteral angry little scream and LOTS of crying. I thought ear infections, teething molars, but now I see how obvious it is.. he was just frusterated. So Yesterday we learned several signs and I know this sounds like I am exagerating.. but last night and this morning.. I have not seen him THIS happy in months. I mean I do the sign.. make him do the sign and he kicks his legs and smiles.. Phew! He is thinking.. “YES, LADY THAT IS WHAT I WAS SAYING!”
So Physical therapy potentially two times a week and speech two times a week. Uhhh can anyone say.. CO PAY? So I am now searching for some grants or assistance. Otherwise.. this is gonna break us.
I received an email from a good friend of mine, another liver mom (actually if we lived near each other I think we might be cloned families two boys, both wonderfully perfect.. right Sheryl?) and she said in her email… I am putting this under the “Karma is crap” category. Ahhhhh Yes. Cheryl (Angel Haley’s mom) also carries the Karma is crap theory. I always love how she puts it… “If Karma was real: innocent children wouldn’t suffer and rapist wouldn’t walk free.” Well said Cheryl.
I guess this is just the “well That’s life category”… and for some reason that actually brings great comfort! I mean.. it is just life. Having two kids needing some form of therapy and having some form of issues.. not really that unusual. Go look at my guestbook and read about the darling byesiblings… I mean, this happens, and it stinks.
I did say with a wink wink to my friend yesterday at Mason’s speech eval, “Uhh this guarentees me that my children will be perfect precious angels when they are teenagers, right???” NOPE… you see because THAT would be Karma. And we know that is a load of well… doo doo.
A family I love and adore to follow at caringbridge is this little boy Zach . A terrible type of cancer, sick and tortured with illness, and left with little medical hope, Zach has beaten odds that were unreal. A hero! So now he is hitting preteen and his hilariously witty father is telling us the real deal on how tough that is…. It is heartbreaking, it is funny, it is just… Life.
So now here I am… all about Mason on Aiden’s page. No folks I will NOT be setting up a caring bridge page for Mason.. (I say this laughing so loud my coffee is spitting onto the computer screen) But yes.. sometimes I may just cover May- May’s progress. Yes we call him May May. We also call him Mayer May… and Macie… Note to self.. when naming children make sure nick names actually sound cute… Aid-ey just isn’t that cute.
Well anyway that is the scoop. The whole story. I am now doing the sign for “all done”… Thank you for all your prayers, please remember Matty and Kelly as well as precious adorable: Penelope
Pray for all the liver families, especially little Sasha who is listed Status 1A in desperate need of a miracle.
God bless
The Hawk family!
Tuesday, February 13, 2007 12:16 AM CST
Wednesday (valentines day)UPDATE!
Mason is done!!!
The ct scan was amazingly different with a child that was obviously never traumatized before. I mean totally different. He started screaming and crying once they pappoosed him and strapped his head down, but then like any professional hospital mom, I started singing every stinking Barney song I knew as loud as I could. I was basically tap dancing around the CT scanner. I could see the rad techs rolling on the floor... by the time Mason's scan was finished he had only one expression on his face:
"My mommy is a freak"
HAHAHA
Thanks for the prayers. Results are in a few days! I will update you asap!
No matter what they see on CT scan, there can't be anything wrong with THIS child...
He is JUST perfect for THIS crazy family!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tuesday Update
Ahhh hello there, my journal. Place for deepest thoughts to be spread amoungst just a few friends (err thousands of people?) time for me to just tell it like it is. *like it is for at least THIS mom/ woman*
You know when I was pregnant with my first baby, illness never really crossed my mind. I mean the fact was, his ultrasounds all showed a perfectly healthy baby boy. (nince pounds!) All of those scary blood tests that they suggest you do came back fine, so when he was 2 days old and we KNEW something was wrong since he had a specific type of jaundice that isn't normal, I was shocked. Blown away... I couldn't at all ever re-create those emotions if I tried. And I am NOT going to try. I mean I was shocked..but POSITIVE all those "worst case scenarios" were absolutly him.
For example:
ON day 3 of Aiden's life this adorable and tiny GI doctor came from the children's hospital to talk about Aiden's direct bili being elevated.
He said, "well it could be a ton of reasons why he has this type of elevated bilirubiun. We have to start ruling out the obvious to the rarest." He held his arms outstreched showing me all of the things it could be and how he would finally get to the last and rarer things.
I pointed to his left hand which indicated worst case scenario and simply said, "what is THAT part of the gamut? Because test it today. I know he has it."
Nice. This is what we call positive thinking at it's best folks! I say.. WHAT IS WORSE CASE? BECAUSE THAT IS WHAT HE HAS.... lovely. A proud moment of my part. However when the answer included a disease called Biliary Atresia ... we all know it was probably mother's intuition at it's finest.
So time has gone by. Most of you all know this story, but since this is my journal I want to say it again. Aiden was diagnosed with Biliary Atresia. We were told all the horrific things about it, we immediatly saw all the horriffic worst cases scenarious. It began like this:
"He MAY develop some complications that SOME kids get... this can progress his road to transplant.." again my adorable GI doctor mentioned.
"OK what ARE those horrible complications, because he WILL have them." That is me. To the piont. Prepare me, tell me, educate me and please most of all don't be buttering things up and beating around bushes.
And as you know 3 days after his Kasai sugery at 6 weeks old we started the complications with a nasty bout of cholangitis. Then the ascities.. and of course the worst of worsts his blood was hard to clot and he began to suffer life threatening bleeds.
Not much room again for positive thinking.
Yet....
Joey and I would sit in the cafeteria of the hospital with our bright yellow baby WILLING him, praying OVER him, saying, "Aiden FIGHT this! Tell your liver to let the bile flow... Tell your heart to be a fighter." We knew whatever God's will was...it would be done. But we still fought, with hope.
It was these months and times where we really learned the art of education, perspective, and denial.
Educate me.
I want drink in every ounce of REAL and VALID information I can about Aiden's very serious disease, and the serious side effects. Some people (usually only doctors) said DO NOT go to Support groups. They will just scare you and misinform. Well good thing I didn't listen to that. My support groups have brought the deepest friendships, and have probably saved Aiden's life many times. A topic about a little girl named Drew (and I still remember the name of the topic... "DREW HAD A MAJOR BLEED") probably saved Aiden's life.
I found him in the middle of the night covered in blood, walls covered, bottles covered... black and red blood.. I immedialty went through the steps I had learned from the little girls' mommy that saved her life. And I followed. My first 911 call....
So educate, learn... That is one of the things that gets me through. That get's Aiden through.
Next: CHANGE THAT PERPSECTIVE! Oh Could I just type all about this every day, all day, every minute. It started when Aiden was in for a very long hospital stay at the very beginning. I was sort of a wreck. Like a train wreck of a mess. I was sure that if I stayed awake, I (me alone) could protect Aiden from illness. It was delerious talk, but I was sure this HAD to be the worst thing anyone ever had been through or went through ever. No one ever could have it worse because after all, my heart was broken and shattered so deeply for my baby that NOTHING could feel worse.
So then our private room became a shared room. The little girl in the crib/bed next to my tiny baby was an angel. She changed my perspective. She would never walk. Never probably even speak. She couldn't swallow, and she never had a visitor. She would moan and gag. It was heartbreaking. And then shortly after meeting this little girl, It came to me. Put it into perspective Lisa. This darling little girl...oh...it doesn't even compare.
so the perspective began to change slowly. But then rapidly once I prayed for it to change. I would see much worse than what we faced... much more difficult times... and it made my heart grow greatful for in a strange way, and always humble for what others endured. It was a good thing at this time that I lived pretty much ONLY in a hospital because stepping back into "real world" killed that perspective and I always felt very alone and different. But none the less... my changed perspective has grown daily. The more pain and suffering I watch of others, the more I see it as an oppertunity to live and love and rejoice in what we have. I feel great compassion for my caringbridge friends. Great love compassion, and gratitude for teaching me so much.
So along with wonderful education that is wise, careful, and cautious, I changed my perspective. A bad hair day JUST ISN'T gonna make it a BAD DAY ANYMORE. It is just hair. Bad traffic... nope doesn't bother me. Just more time to crank up the music and sing (or howl in my case) a little longer.
But denial has been my savior in so many ways. OK I know that sounds sooo weird, but believe me, it has. I truelly beleive that God gives us denial (or whatever you wanna call it) to help us handle the things we just can't handle.
Did you know...Kids who have liver (or any) transplants .... their survival rates DROP every year. Most people think.. "ahhh the longer you have the liver your body must get used to it..." Well no... and surely the body does NOT get used to the meds that make that liver stay. The meds are terrible. Terrible drugs... but in the same breath they are miracles for us. They are dreams come true for us. (I love those meds, but wish they weren't so dangrous.) But to sit and think of things 10 or 20 years from now, well honestly, it can be painful. I don't know what is in store (and healthy parent's please don't say you don't either), but denial gives me the freedom to just think about NOW.
If I have a scary thought (whether it is based on reality or not)... I just welcome my good pal denial to take it away. And it is that simple. I love denial. And I know you fellow liver moms.. you know EXACTLY what I mean.
Ok so you are all probably wondering what on earth I am talking about. Well unfortunalty I am not really talking to YOU... I am talking to ME. I am reminding myself how to handle the recent news I have learned. I am reminding myself... how to take this information in, in a way that has worked for me.
Mason went to his PT appiontment. Mason has some mild issues. He has been diagnosed with Hypotonia . He also has a CT scan scheduled for tomarrow to see if his brain stopped growing due to his skull closing too soon. After a 2 hour evaluation, He scored out at 10 months old yesterday for his gross motor. He is nearly 17 months old. He has to have a lot of physical therapy, speech therapy, and who knows what. He still has torticollis of his neck. His spine is twisted to the left. They are suspecting he might have some mild level of pain.
UHHH hello...?? anyone else jaw dropped like me?
So here I am reminding myself lets get educated. (uhh that is why I say do this cautiously! This stuff can be scary!)
I have to tell myself (which isn't hard with Aiden staring at me red and itching with another headache) I need to put this in perspective... 'Will he have a good life? Will he play with friends???' Yes.. then fine... We will deal.
WHY MORE for us to deal with??? (ok shut up.. you forgot your third one Lisa... denial) Deal with this then let it go...
I can't allow myself to walk into some "I must be tainted" pity party or "why can't it just be easy????" load of questions... it hurts way too bad. It breaks my heart to even GO there. I don't know the answers. I don't understand. And I don't even like to ask those questions for the fear of others saying, "everyone has problems"... yes.. I have no problem with "problems".. I would just like my problems to be MY problems. NOT my children.
I mean it IS what it is... He will be in therapy. It won't hurt him, he won't need medication that kills his kidneys' like his brother, he won't have scars. But it isn't easy. Oh well. Easy SHMEASY. I am up for the challange. I am fine with this.. this is NOT a big deal. NOT a BIG DEAL....
(and THAT my friends is denial)
:-)
Prayers for tomarrow's ct scan on Mason. and Prayers for his mommy who has been in that room too many times before.
Leaning on HIM,
Lisa
F.R.O.G.
Fully rely on God!
THURSDAY, February 7, 2007 6:53 AM CST
quick update
I must ask for prayers for the following children: Pray hard for them. (click on their names to be directed to their sites... and take a moment to sign their guestbooks. It means a lot to know that people care)
Matty
Kelly
Roger
Hunter
Please cover them in your prayers. Also pray for these recent Angel Families:
Catie
Ellis
Thank you so much. Keep fighting and don't stop believing!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Wednesday update:
Good news, I found my phone.. bad news camera still missing. And my poor innocent baby was blamed. Oh the injustice! Where was the phone that was missing for 3 weeks? In my purse of course!
So I don’t have the camera yet, but I do have photos that one of Aiden’s friend’s Mommy took from a trip to the aquarium. Thank goodness for others who have camera’s. I just refuse to buy one though when I know it is just been stuffed in one of the overly messy spots in my home.
Well, Mr. Aiden got his labs yesterday. Can you even stand it? Aiden for the first time since his BIRTH actually skipped a calender month for a blood draw. That means for the entire month of January Aiden didn’t get a poke or a needle, or a prod. (ok so I did do that ladel and the poop thing.. but that doesn’t count). Yes, the great thing about being a tiny bit non compliant when it comes to labs is that he got to skip a month. WHOO hooo.. It was 6 weeks since our last draw. And what is the point of labs really anyway? (dont' answer that seriously) His labs are still ridiculous (or re-dik-LE-lus as Aiden would say). His Hemoglobin and hematocrit HIGH HIGH his RBC HIGH, the MCHC, MPV.. all very very high. And yes.. go figure the kid who nearly was killed by the plastic/ latex garment bag.. his eosinophils are RE-DIK-LE-LUS-LY high.
Eosinophils______ normal 0.0 – 3.3 ________ Aiden’s are 12.1
ABS eos ________ normal 0.0 – 0.2 ________Aiden’s are 1.3
What does this mean to you?? The kid is ALLERGIC. And his bone marrow is still over producing the certain type of cell. The reds, and the eos are closely related according to the hematologist. And yes it is still happening. (infact his labs have not been normal in 14 months.) Good news: We now know that it isn’t caused by a type of mailgnacy (from the bone marrow biopsy) and that it is caused by his medication, so now what do we do with that information? Nada… Nothin… that my friends is why I was late on labs.. because what can I do with the information? It isn’t like anyone is willing to pull him from the meds they suspect is causing it. I am still trying to schedule something in Atlanta, but with little luck. I will keep you informed on that. IN the mean time, pray that the itching stops.. I can’t imagine how much it drives HIM crazy to itch ALL the time, when it makes me nuts just to watch him. I just feel terrible for him!
In other news Mason has his physical therapy appointment on Monday. I am looking forward to this.(although it is at 9:00 am and a morning person I am not) I think it will be good to have some pointers for Mason, yet I do see him improving a tad. And it seems the babble button got turned on and it won’t turn off.. the child just talks non stop. It is HILARIOUS actually. He loves to say “run away” from the little song “where is thumbkin?” cute as a button! Oh I just love these little kids!
I would have many more children if it wasn’t for all of our circumstances. (my husband is fainting right now reading this) I know a lot of mothers have that same feeling. I wonder if I will ever loose that urge to have more children or if your head just gets louder than your heart and by the time you know it biology takes over and you have no choice. I KNOW we are finished with our family, and honestly I am looking forward to hauling around T ball uniforms and skate boards, and ditching the diaper bags etc. Heck just two kids that can walk, that sounds like heaven.
OK so onto some exciting and wonderful. As you all know Aiden was given a wonderful gift from the Make a Wish Foundation a few years ago. That wish was his club house and swing set. We love it and he loves it, and everytime he is on it squealing with his little friends, I just smile and think how thankful I am.
In case you have lived under a rock your whole life and never heard of the Make a Wish Foundation (ok just kidding folks) let me tell you a little bit about it:
"Since 1980, the Make-A-Wish Foundation® has enriched the lives of children with life-threatening medical conditions through its wish-granting work. The Foundation's mission reflects the life-changing impact that a Make-A-Wish® experience has on children, families, referral sources, donors, sponsors and entire communities..."
My definition: Basically it is for kids who have been dealt a crappy hand at life and who have lives that may be, or surely will be shortened because of what they have endured. They aren't born and cuddled, they are born and sent into surgery. They are told they have ____ amount of years they MAY survive. So this foundation gives them something to make them smile, whether it is a trip, or a gift, or a visit with someone they want to meet. And no it doesn't take away the bad, but in our case it does help create some good too.
SO why am I harping on the MAW foundation?? Well... Aiden was asked to be the "Make a Wish Spokes-Child" for the very first Walk for Wishes! Of course we are honored, and accepted. (although I can only imagine what he would actually say if given a microphone... "BOOGERS! STINKY BUTT!") But now I need your help. If you are local and can possible join "Aiden's Team" on the walk, please sign up! Here is how:
go to: http://suncoastwalk.wishcentral.org
IT may be one morning out of your life you are walking, but with every step I pray we are imagining the pain that children like Haley felt when she walked, or the triumph of every step a child takes after more surgery, or children who are now only walking with just the hope that their last days are peaceful. (ps/ you might wanna click on those links and start praying!)
The date of the Walk is May 5th (cinco de mayo) and I know it will be a beautiful thing. Email me if you have any questions!
OK so I have to tell you all about my Joey. This one is for you hunny! Who said life isn't full circle? Joey, my darling, will be a JUDGE in the Strawberry Festival/ and state fair for the 4-H plant and garden contest! Oh Hunny.. I am praying and praying your photo of you showing your pig, as a child, in FFA shows up. Yes, it seems now he has hit the big time. Hint Hint to all of the 4-H-ers out there, he said he would be judging on the difficulty of the actual plant is to grow. I just can't wait to get a picture of him with his little blue ribbon and his judge's tag. Like Charlotte's web...
Anyway, Have a great week/ day or whatever you choose to make great!
God Bless!
Lisa
Friday, February 2, 2007 8:49 AM CST
Prayer request: pray for my Daddy as he is in the hospital getting his heart tested from chest pain. Thank you..
Update:
wanna hear about our fun day??? (she says with scarcasm dripping off her voice)
Yesterday my oldest friend (she isn't old.. but we have been friends the longest) and I went to David's bridal shop to try on dresses for her. Aiden and Mason came along. As we were there and Jennifer tried her dresses on, I see Aiden getting all red. His top right thigh looks like it has mesquito bites on it, and his right arm is also now patching with hives. He isn't any worse for the wear, he is just talking to some tiny baby next to him. I try to tell myself that he doesn't get hives like he used to (and he doesn't) but a friend every once in a while will remind me of a time or two. (Like when he was in Atlanta at the foundation party in Nov and he was all hivey and itchy while our friend Karen was playing with him.) But tiny hives I can handle. Hives everywhere... well that isn't so fun.
So we just walk over to the dresses all lined up. Aiden sees these hundred white dresses covered in plastic bags as the coolest thing ever. *(yes my child is that annoying kid that tries to run in the dresses and play peek a boo in them) so off he goes... weaving in and out like a little crazed man. I am trying to get him to stop touching all the dresses (all in the plastic clear garment bags) but he still mannages to emerge himself in a sea of them. (OK admit it.. you did it when you were a kid... and it IS fun.. NAUGHTY but fun)
So I finally see his little arm in one of the racks poke out. AHA! got you! But to my suprise there is my child looking like a faint memory (or nightmare) from the past. COVERED in hives, red inflamed skin, blood shot eyes, sneezing, and coughing. OH CRAP! Tell me those clear garment bags aren't LATEX. CRAP CRAP... they are I am sure of it.
OUT! We quickly leave the store. I am so unprepared! I know I have epi pens with me, of course, but where is my benedryl!? where is my pulse ox? Dang it, this hasn't happened in SO long, I just am not prepared.
OUtside it is a windy day and we he is just standing there and things start to look better. He told me his skin was stinging, but after 10 minutes or so the redness goes away except a few on his cheek and his right arm. I am feeling better a tad. Poor little Aiden was rambling on about how epipens hurt. I am just thinking to myself.. I can't even believe my little guy can't go to a stinking dress store. UGH.
So of course like any good mother of a chronically ill child would do... I immedialty looked at how much cash I had in my purse and bought him something. We actually purchased a little aquarium of Sea Monkeys. He declared that it was his "dream come true" ... more on this later.
So I am now on the hunt for a store with benedryl. Jennifer and I swing into a Wild Oats Store. Anyone? Anyone know what I am talking about? All organic, healthy, beautifully looking, and EXPENSIVE food? Jennifer takes Mason in her cart, I take aiden in mine, and off to the "pharmacy" area. Uhhhh what the heck? This is like holistic ala natural stuff. And it STINKS. Like lavander, and every other fragrance and aroma therapy known to man mixed in one area. I am quickly realizing they probably don't "believe" in benedryl. I see a sign that says, "Allergy health support" ohhh fancy shamancy. I head that way. Fig leaf extract? Ummm coral cucumber oil? ummmm... WHERE IS THE BENEDRYL? I am searching for diphenhydramine and then I see Aiden rubbing his eyes, and his nose pour out all over.
I am sure he is probably allergic to all those fragrances... So i hollar to Jen and tell her we are leaving to sit outside. I take Aiden outside. He is hyper hyper hyper. This my friends is how MY child shows stress. Running dancing.. trying to make me laugh. Bionking his head. and then scratching his eyes and nose so hard when he thinks I am not looking.
ANd I remember! I had my pink bag in my car.. it has benedryl in it. I run to the car he squirts it in his mouth and AHhhhhhh....Well not really. The poor kid is sort of grunting his words out, although I DO have my stethascope and blood pressure cuff and I am not hearing any great wheezing for the epi. It is borderline, but we chose to just go home and see how he does.
Ok I know it is a long story. And if you have made it this far.. You win a new car! ok no new car.. but I have to document this. I have to remind myself that he ISN"T cured. he isn't better. Just because he is getting WAY better treatment with the steriods and with our prevention.. I need to try to keep myself OUT of this denial place. Because denial with life threatening allergies.. is what makes it more life threatening.
He got an extra dose of prednisone once home, and as I was giving him the steriods, I looked at that bottle of liquid kidney-killer and just wanted to MARRY it! Thank God that we have more than flax seed oil and cucumber cream.. those MAY be wonderful in some parts of our life, but I am just so thankful for these steriods sometimes.
ANd THAT my friends was yesterday. Well except of course Aiden's new "little buddies" or his "little fellows" the Sea monekeys. He had those things tucked into their own bed. He kissed the containor a hundred times, and it seems today is their Birthday.
WHAT is a sea monkey?? well you can see for yourself.
www.sea-monkey.com
He wanted to know if they crawled around. I told him no. He was so dissapointed, but I explained how they lived in a bowl like little fish/ worm/ things. He just sayed he was going to pray to God that they would learn to crawl so they could kiss him.
This morning Aiden is all itchy.. but that isn't new. He has been itching for about 10 days. He actually has drawn blood. I think we are going to fill a script for atarax to help some. But overall we are no worse for the wear. I have learned something new though.. dress stores are a no no and latex is everywhere.
keep him in your prayers!
Itchingly,
Lisa
Wednesday, January 31, 2007 7:52 AM CST
He is so funny to me:
Last week we were getting ready to go to the hospital for his kidney appointment and he showed me just how insightful a 4 year old can be:
"Aiden hunny, get ready we need to be at the doctor's office"
"Is it for me or Mason?" he says...
"It is for you Aiden," I reply gathering up our bags and video games for the waiting room.
He is standing firm and giving me a scared face..."Am I going to get a Bumblebee (this is code of blood draw)?"
"No sweetie, no Bumblebee today" I say, patting him on his head.
Aiden stares at me and you can see the relief is immediatly replaced with another lightbulb.. "SO what are we doing there then??"
"This is the appointment I just talk to your doctor. Now, come on Aiden we will be late." I am rushing around grabbing my sqwaking Mason and all the bags that come with him.
Aiden is standing there, now with a smirk on his little face, "IF all you do is talk to the doctor, then WHY can't you just call him on the PHONE?!" and with that he lets out a big "UGH!" and heads out the front door.
Good point, Aiden... Good point.
Monday, January 29, 2007 9:46 AM CST
OK so I lied... well not lied on purpose.. but just by accident. (I borrowed that excuse from Aiden)
So did you know that on my video camera there is a button that says "snap shot" and you push it and it makes a cute little camera noise and then you THINK* you are taking a photo.. but basically it is a big fake out?? Yep sir-ie I have tried and tried to figureout how to transfer the "photos" onto a disk or anywhere.. and come to find out it is just a fake out feature. So basically No pictures of the parade. (Joey was sweating that I would show you him in the red ruffled pirate shirt)
And to top it off... I have this prankster baby. He thinks he is SOO funny. You know.. crawl crawl... "look at what i stumbled across.. mommy's keys..." crawl crawl.. hide it in large toy box.
SO currently I am missing a cell phone, and my digital camera. I can only blame Mason at this time (as I have never lost ANYTHING before.. groan) So not only am I going through camera withdrawls, I have no cell phone. 11 days in counting. (please don't call my phone if you actually want me to know about it)
Ahh yes.. THESE are the things mothers should write down about their children. NOT all about about their first squeak or favorite food.. but the fact that babies like to hide things. Now I remember.. Aiden did the same thing to me. I remember his obsession with my cellphone and how it one day ended up floating in our toilet.. ahh the toilet obsession. Not the BEST thing for an immune supressed toddler, but offically it never did hurt him. So baby brother is now following big brother in behavoir and the outcome is no photos for me or this site. BOO HOOO.
In other news, Aiden's kidney appointment was good! No new news to report. Same level of norvasc (his blood pressure medication). His BP is overall very controlled now. It does spike, but we can handle that with an extra pill here and there. Things look good on that front. Keeping Aiden hydrated all the time is all we have to do. And that is about it. We are due for his monthly labs and that will be a good way to watch him as well. Things have looked good on that front, except the STILL elevated red counts, hemoglobin, hematocrit, etc.. Officially over 1 year of this. It is so strange.
Joey and I will be meeting with his transplant team in Atlanta soon, I am just waiting on the date to be scheduled. It hopefully will be productive and we will be able to have some long overdue discussion about Aiden his overall health.
When Aiden was born and they told me that he had to have a liver transplant, we chose Atlanta. It was a decision I believe that God directed and we were just passengers on for the ride. It was the right choice and a choice I do not regret. However years out, with him being a complicated kid, it is HARD to live far from your center. It is very hard. It can be difficult to manage your child's care in two main locations. Locally and in a whole 'nother state.
I remember when Aiden was 1 year post transplant, and his liver enzymes had yet to fall below the 900 mark (normal 10-40). He had gone through many rejections, contracting CMV hepatitis and CMV gastritis, as well as an eopsinophillic disease. We spent 200 days in the hospital or away from home out of 365 days. TWO HUNDRED. Joey and I came to the conclusion...we need to move. Move closer to the hospital, closer to where the best care is for him. SO life would not be so interupted every admission or every clinic visit. The day came that we were going to make the final decision to leave florida and move to Atlanta area...And that day was the first day in 11 1/2 months his labs begain to drop. Coincidence? Nope. From then on, Aiden's liver labs have been phenominal. Better than mine I am sure. Rock solid (praise God)....
But today after 4 1/2 years of this life.. I do sometimes think, gosh... it still is so hard to be so far away. So we will be having a meeting with the team to just best clarify how to optimize our distance and our two teams of doctors. Please pray over this meeting. I have faith that it will be productive and positive.
Wow all of that to say..so little. Maybe it feels good to get it off my chest. You know it is funny how there are SO many levels of living a transplant mom's life that get effected. I honestly didn't know that life had this many levels. I sometimes do feel alone on my own Transplant Mom Island (NBC this could be the next reality show). I have so many caring friends and family, but there are just sometimes where Joey and I cast away to a different place. A place where our worries are by the minute but can't really be declared because of the lack of understanding. I know a lot of parents who are in our shoes feel similarily. I know it seems that we would be used to all aspects of this, that it shouldn't even really bother us, that we should suck it up and count the blessings. But Honestly, it takes work.
My mom and I are doing a fantastic Study together. Last night I was telling her, how frusterating it is sometimes when people think my Faith is a "gift" from God. I told my mom something my friend Cheryl and I say. Faith is an everyday effort. Not faith in God, or Faith in the big picture, but FAITH and letting the FEAR GO. It is a daily if not minute by minute effort. I am thankful that I have support and it seems effortless to the outside, but sometimes... it can be tough.
ok ok ok... you see what happens when I don't have cute pictures to show?? I get deep... Ok everyone deep breath.. in... then.. out.... Ok, in... then.. out...
Lets hope that I find my camera soon I can already feel some sappy poetry getting created in my head...
Have a good week. God bless
Lisa
Tuesday, January 23, 2007 10:31 AM CST
(OK ok... no pics yet.. I am actually (GASP!) having to read my owners manual on my video camera on how to get the pics onto a disk. But check in very soon...)
update
Wow the Gasparilla parade was an incredible experience! I really couldn't believe all the people! Joey and I just kept looking at each other in shock. But let me back up.. The people on the Algeria float were So sweet and accommodating! Thank you too all of you who invited us on your float. It was an amazing experience that we will remember forever!
We got to sit on the second level of the float, and we were given a huge bag of beads to throw. In case you didn't check out the link, go to www.gasparillaextravaganza.com
It was all about the beads. Thousands and thousands of people were there. I was pretty well... let me say it again... Shocked! The parade couldn't have been on a more perfectly beautiful day. I even got a tad bit of a sunburn on my nose.
Joey, Aiden and I were all decked out in our pirate wear, and I have to be honest, I felt like a total weirdo until I got down to the parade wearing a "wenches' shirt" or Peasant blouse, but it was sincerely nothing like Joey in his red satin shirt with ruffles and a black pirate do rag. I told you it was going to be hilarious!
The people were SO into it!! I mean not just little kids screaming, "throw me beads" the grown ups were killing me! They even had make shift bead collection things that said, "throw beads here" with a basketball hoop stuck to a board with a box under it for the beads. Then there were the people with the 10 thousand beads around their necks. I even saw a police officer UN attaching a young boy who was stuck to the barricade with his beads on his neck.
Screaming, waving and yelling for your beads... Uhhhhhhhhh..... uhhhhhhh.. I was trying to figure out if there was some sort of place they were handing their beads in for money. I mean did I MISS something?? Are beads ... uh... fun? I mean it was a tad bit overboard. But all in good fun.
Now next week is the adult parade ... and lets just say, the beads become an even hotter commodity. And things get a tad wild. So safe to say we won't be coming to THAT!
But in any case the weekend was so much fun, I videotaped from the top of the float and took pictures of the pirate invasion and ship. But I just hit "snap shot" on the video camera and now I have to read the owners manual on how to convert those "pictures" to real photos. So stay tuned... pics are coming.. (did I mention red satin ruffled pirate shirt on Joey??) And not to mention the cutest 4 year old pirate there. The pictures are worth waiting for!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
So other than the parade we laid very low this weekend. Tinkering around the house. Grilling out, and again eating outside. The weather is still in the low 80's although the weathermen keep telling us that we are going to get a cold front. It hasn't happened yet, and I am thankful! I am just going to submit and put the winter clothes back into the attic and accept that we are just going to skip winter totally here. (that will bring the cold weather for sure)
Aiden has an appiontment with his nephrologist tomarrow at 3:45. Joey will be meeting us there. I am always nervous when we go to nephroplogy, it seems like a place we shouldn't belong. But we seem to at least belong a little. Enough for them to make us come back monthly.
Aiden again has the dehydration thing happening today, so it will be interesting timing for tomarrows appointment. I guess we will get labs in the morning as well. I hate getting labs. No, after 4 and 3/4 years I have never and will never get used to it. I hate it.. HATE it HATE it... (this is where I kick my feet and whine like a... well..four year old.) I am sure some physchologists could have a field day with moms of chronic kids... we are a resiliant tough bunch, but it doesn't mean we go along with out a fight.
Little Mason is getting a Physical therapy eval in a few weeks, on the account that he has some issues with walking. (issue= doesn't walk) I am sure just one day shy of his appointment Mason will walk, just so I can go and have the PT people look at me like a over reactive medical mom. But let me just say, I have dragged my feet on this appiontmet for so long. He sat late, held his head late, crawled late, and yes wow shocker he walks late.... BUT man he is a professional sassy baby! Like a real prodigy! Sassing like a 2 year old! ha ha....It does though seem silly to have a "date or age" on which it is "normal" for a child to walk. But at 16 months I can see why it can't hurt to teach us some pointers.
In other news, I just want to request that you pray for our family as we are making some important decisions regarding Aiden's medical care. I know that God has wonderful things in store for our family, and I just pray that we have some clear direction in regards to this.
Check back asap for the pics of the pirade.. HUGS!
Tuesday, January 16, 2007 11:30 AM CST
The Beach?? In January?? The weather here, (like everywhere) is just been SO strange. They call it El Nino. I never understood it the first wave of El Nino talk, and I don't get it now. But it sure makes me want to go see that Al Gore movie... yikes.
Little Guestbook Quiz: If you are signing my guestbook, I am curious what is the weather where YOU are?
SO things have been like outdoor adventureland. First the Beach, at Fort Desoto (I think ranked one of America's best beaches) and played all over the fort, had a picnic, and then at the beach:
here are the boys at Fort Desoto... They had been "captured"
You know THIS picture at our little picnic just goes to show you the things ONLY a parent would do. Kiss your child while they have half chewed slobber filled chicken hanging out of their mouths. ONLY a parent.
Then we mosied out to the beaches, where Aiden and Mason both had a blast just digging and digging and well... digging. It's a BOY THING.
So then Joey left town. EGAD!! He was gone for a whole week. Well work week. I was then suddenly eternally greatful Joey doesn't travel. Yes I missed my husband, but man I never ever realized how much I despise taking out the trash!! (just kidding hunny!)
So when Joey got back this weekend into town I was so excited and ready to just conquer the world with home improvements and family outings. So Saturday morning, Aiden declares he is sick. Diahrea. Over and over. Great. So this is about once a month now. I look in the toilet (too much info? too late.. you already read that; might as well keep going) and I see blood. Double Great.
So I do what any mother of a chronically ill child, and a child with GI issues does. I find an old soup ladel and take out some of the blood and then test it. Yes, again this is what seperates me from regular moms, I do OWN hemacult cards and devloping drops.
Ok so you all are now cringing and grossed out thinking one thing.. "WHY ON EARTH DID SHE DO THAT!!!" (or why on Earth did she TYPE THAT? pick one) I did it because of two reasons.
Reason to ruin a perfectly good soup ladel #1
Because they tell me to!! When he has blood in his stool they tell me to get a sample! They want to check it, for a host of wonderful information. They (as in all the gross doctors) want it!
Reason to ruin a perfectly good soup ladel #2
(this by the way is the real reason) Long story short, we have a new throw blanket. It is red. It is made out of red fiber material. The blood in the toilet looked like peices of this blanket, and yes... it did cross my mind that somehow Aiden ATE some blanket.
Thankfully he didn't EAT The blanket, but unfortunatly it was blood. SO I wait. (oh and YES I threw AWAY the ladel) I tell myself (Dr. Mom) that if he "does it again" I will take him to the ER, as I know they (gross doctors) would want me to. If he DOESN'T have more blood in his stool, then I will just call them on monday. Thankfully Aiden was fine, no more blood. Although I was uneasy to be honest. But once again these are the choices we make.
So with no more soup ladel experiences we dive fully back into our normal denial mode and have a wonderful weekend. We ventured to Busch Gardens on Sunday, and man oh man it was PACKED! Peak flu season, I have my tripple immune supressed transplant patient in the midst of thousands of strangers... all goes back to choices. And LIVING the life his Gift gave him, is the choice we make.
Busch Gardens was great, as usual. Aiden had a really awesome experience there. He got to go to his first MOVIE!!! They have a theater that does a 4-D movie. No food or drinks allowed. SO there he sat, in a movie theater... first time in his life. And he was floating on air. It was GREAT! It was a pirate show (stay tuned I mention pirates in a minute). Mason even came into the theater, and both decked in their cool 4-D glasses
(Aiden thinks this picture of Mason is HILARIOUS... I printed it just so he can have a good laugh whenever he wants it.)
SO Busch Gardens was a lot of fun. Hot as it was in the low 80's. I love the animals the most, Joey loves the hospitality house (free beer), and Of course Aiden is all about the train.
Mr Iguana wants a frito!
Built in best friends! (at least for this moment)
Sunday was great, while yesterday was more of a lazy day. Aiden still complained of stomach pain, and his reflux is so out of control. He will be getting scoped very soon I bet it is a mess all in there.
But yesterday, we did get a very exciting call!!
The Make a Wish Foundation coordinator asked if Aiden would like to be a "wish child" on their float in the Gasparilla parade (children's parade) Of course we are THRILLED!! Joey and Aiden will dress like pirates for the invasion and hand out beads to the kids. It will be HILARIOUS be sure to check for photos next week. The parade is Saturday and it is HUGE in Tampa. Check out the link, and read the very interesting history behind gasparilla!
So with all that said, things have been good. Aiden's blood pressure has been peaking but we are managing it well. I think the heat doesn't help when he is so active. The diahrea is a whole nother update (one that i have been avoiding for some time)... it is all kidney related. Basically the kidney doctor said that the body is trying to preserve a normal kidney function by drawing fluid of the GI tract. When this happens he is dehydrated and have diahrea. This explains the low potassium levels, cracked bleeding lips for a year, and even yes the polycythemia is due to dehydration. (it doesn't matter how much he drinks, it is all about renal function) It seems Aiden has a thing called hyper-reninism or something. High amounts of renin which increases the blood pressure too.
(Don't you like how I squeaze all that scary medical stuff in at the end?)
Basically Aiden's kidneys are functioning normal but at the sake of abnormal fluid levels, and hypertension. His nephrologist (who is on the kidney transplant team here) has expressed that Aiden might need to have some serious changes in medication to help his kidneys from more damage.
I will continue all part of the update at a later time.... at this point we only know that we are to keep him very hydrated and make him drink drink drink.
SO that is what we do... that and just have a good life, enjoying one another and not worrying about things that haven't happened yet. Of course, and PRAY. Pray first.. FROG (fully rely on God) and then have a good life and not worry.
Well check back here soon, with details on the parade! I am just rolling on the floor imagining Joey as a pirate. Oh the family in Albany will get a kick out of this one.
God Bless,
Love the Hawk Family!
Wednesday, January 10, 2007 6:42 PM CST
Good bye 2006! Hello New Year!
Of course that meant saying goodbye to Christmas, which was wonderful this year. But a new year means putting away the Christmas decorations and lights. As well as saying good bye to our Christmas Cow “Moo-ey”. (who needs light up deer anyway?)
It is also time to say good bye to even some really good memeories. 2006 (and 2005, 2004, 2003) was the year of Aiden and his deep love of trains… and well this year I think it is now a “family thing”
We celebrated New years with the usual big bonfire and hot dogs. 
We lit off some fireworks, 
(Uhh something just seems wrong about my 4 year old holding fire)
Over all New Years was so much fun. I mean it is a weird holiday. It is just a day that marks the use of a new calender.. but it stands for something. People make these wonderful resolutions and everyone seems fresh and ready to take on what lies ahead, well at least until the roll out of bed and scrap that idea.
But when I see New Year, I still see….
New beginning
I know that every single year I start the year out with the same comments.. “THIS is the year we won’t get admitted…” of course I am usually saying that from a hospital room on New Years day, but none the less I DECLARE it every year.
This year will be the exception. I am not declaring this ridiculous goal, instead I am just gonna accept that this year may have some bumps and some admitances, but it won’t be a failure. It won’t be a failure or a set back or another step backwards. Not anymore.
I think I had some epiphany (possibly several at once) but the new “new year” mantra is more like..
“I really HOPE we don’t get admitted”
Hope will be the theme of this year. I just have a really good feeling that things are going to change this year for the better. I am hopeful. And why not? Isn’t that what God instructs me to do? Have HOPE in him?
Joey and I requested Aiden’s medical records recently for some treatment he will be getting at another hospital. It arrived recently. Just summaries and just notes… 659 pages of it. I didn’t expect it to shake me like it did, after all… I WAS THERE for it all.. so why when I glanced. (mearly glanced) Why did it feel like I was struck upside the head with a bowling ball? The headache began immediately, and I started to read. I see these words:
“Ashen apperance, unresponsive upon arrival”…. And other disturbing words. I look at the diagnosis and see anaphylaxis at the top. Just a day in the life. I pick the stack up about 1/4 way down and see… “steriod resistent moderate to severe rejection….” Go to glance at a more recent page and the tears, the smells of the hospital, the word jump out at me and make me physically sick. “Renal insufficency. Severe hypertensive episodes, near syncope”
STOP! Stop. And it comes to me. (this is the epiphany)
Praise Him. Praise him for these 659 pages of answered prayer. Praise God for 659 pages of days we MADE IT THROUGH! Don’t believe this is something for self pity, but instead look at this with the eyes that God intended me to look at it with. Eyes of greatfulness.
“Be joyful always, pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus” 1 Thes 5:16
So this my friends marks a new year.. a year of Hope and a year of greatfullness. I am ready for 2007 and what it has instore. I know already the Florida Gators have just started it off with a bang by winning the National Championship! Go Gators!…(where are those Dawgs in the rankings?? Hmmmmm just don’t see them!)
With Aiden’s next lab draw we will be running some allergins. It has been a year and it is time to see if the very very strict elimination of these foods has helped his immune system to become less allergic. I am soo HOPEful. Heck I already know the answer. This child is so different that the child one year ago regarding his allergies. (Thank God!) I am praying for him to get his beef lower. Beef and pork.. Please pray.. no beef and pork.
You are probably wondering why not pray for no peanuts or milk.. well I said 2007 and was the year of Hope.. not DENIAL! (that was last year) Hahaha.. But on a serious note beef and pork is in all of his medications in the pill form and I want SO bad for him to change from all liquids to pills. That would make everything so much easier. Aiden is currently taking 8 medications Prograf, prednisone, cellcept, singulair, zyrtec, zantac, previcid, norvasc, and will probably start vasotec this month to help control his blood pressure. That is A LOT Of sticky liquid for one little guys to swallow. Plus his reflux is terrible from the liquid steriods. So I am HOPEFUL that he is better with those allergies.
Anyway, here is to the new year. A new beginning of the same ole junk. A time of even more celebration of life and thankfulness of what we have. It is a time to set my eyes hopefully on him healing, so the only way to continue this hopeful feeling is to pray. I always pray for my family, for Aiden. But today I will specifically be praying for Aiden’s kidneys, his blood pressure, and his body as a whole. I do believe in healing; I do believe God can work miracles…. (I just saw 659 pages of God’s intervention.)
This year is going to be good.. and if it ISN'T… well, we have some practice with that. Hahahaha
Happy New Year!
The Hawks
Tuesday, December 26, 2006 11:23 PM CST
If you are my 100,000 visitor please sign the guestbook saying it was YOU!! The counter is at the bottom of the page. If you are the "winner" you get a prize! (haven't figured this out yet... but work with me folks) So check your number and just take a second and let me know who it was. Thanks! (it will probably be ME since I read my own site 3x a day like a big dork.. like I don't get enough of the reality here???)
anyway.. back to the update:
On Christmas eve-eve we all decided to go out on the boat. It has been unseasonably hot here, (although we FINALLY got a cold front today) and it just felt like the most Florida- chirstmasy-thing to do, so we all geared up with our fishing poles, and life vests and went Dolphin and manatee hunting. OK so yes.. the day that I rececntly wrote about (Joey's birthday) with flipper and his buddies playing with us and teasing us, well it didn't exactly happen again. But that was only because I brought my camera this time. We did see one manatee, but by the time I was done screaming at Joey to turn the engine off (it was already off) and getting the camera out.. he went under the water. I got a wonderful picture of well...
him UNDER the water.
we saw Florida's version of some "partidge's in a pear tree"
We later kept going and spotted some stingrays, I got their pictures, but it wasn't that exciting.
Not exactly bringing me me to tears with their magestic beauty like the dolphins, but that was ok. We had a great time any way.
Aiden had begged Daddy if he could hold his pole and fish with the shrimp bait, so Daddy had one pole, 
and Aiden the other. Mason and I just splashed in the water and he fed me fritos.
Then suddenly Aiden said, "DADDY DADDY! I caught something!" Joey began telling him to reel it in. Showing how to lift the rod up, and reel fast (Aiden's favorite) and without dropping Mason, I found my camera, had that puppy turned on and managed to get some shots of this exciting event.
here is daddy helping Aiden reel it in...
lifting it out of the water....
ok so it isn't a whale or anything...
but it doesn't matter when you look at the smile on Aiden's face...so proud
Ok so it wasn't dolphins swimming and manatees floating to the top, but yes I managed to find my son catching fish on the 4 year anniversary of his second serious surgery post transplant, (His portal vein revision.) more beatuiful and tear jerking than anything. Yes I know, it seems that I can cry at the drop of a hat. SO this was not a big stretch for me (don't get me started on the Disney Christmas parade, for some reason that thing had me boo hoo-ing like crazy) But it was just adorable to see Aiden so FULL of life and just being such a boy, with is fishing pole and his yucky fish. What a miracle that is. A real honest to God miracle.
SO anyway, Santa has made his mark this year. With more than one letter, back and forth, it seems Santa had a tele-port mail box that hung on our tree, and with every letter Aiden crammed in the tube, and return reply would be waiting for him in the morning. Joey got the clever idea that we could take the hess truck bag and photo copy it and print the picture of the Hess Truck and put it in the Santa mailbox. So in the morning, Aiden nearly flipped his lid, saying " I believe I believe!" when he saw the peice of paper with the Hess truck's photo on it. It was priceless.
I didn't have the oppertunity to share all about our one week with no TV that we had here at the Hawk House, but it so happened be the entire week before Christmas we unplugged the television and just spent time talking and playing and being a family. So Christmas eve was the first night we had it on, Joey and I every year watch the "Yule log". (You know the camera that only shoots the cheesy fireplace and play even cheesier Christmas songs? Yep that is the one. And we love it.) So once the boys finally found their slumber, which might I add was INCREDIABLY late, JOey and I pulled out all the presents, that made noises and were give-aways when you shake them, and I began to wrap. It was a wonderful night, 
I loved the way the tree was glowing with all the lights (even if it IS a charlie brown tree), and with the packages under them. I even made a tiny train track and put fake snow all over it.
We had Santa's gifts all laid out, ready for the boys in the morning. We figured when they woke up they would walk (or crawl in Mason's case) in and find their stuff just layed out by elves and Mr. Clause himself.
NOPE..
NOT what happened...
INstead, Aiden woke up at 2:30 AM and quiety tip toed into the living room. Me being the world lightest sleeper (except when I am kicking joey to get a baby or dog) I heard him in there. I tapped Joey and we listened as he tipped toed, and breathed so heavy it was heard in the next room.
"whoa"...
That was all I heard, and then tip toe... tip toe... He's staring at us. ... keep your eyes closed... he doesn't know we know he peeked.... he is still standing by the door to our room staring at us... tip toe.... tip toe..... heavy breaths....
"MOMMY I AM SCARED!"
I guess Santa feels a little like a prowler to a 4 year old. A little freaky with all the letters and now the gift. Lets just be thankful that Santa is on the "good guy" team with all that magic, huh?
IN the morning, Mason was first to rise, then Daddy and myself. Aiden, completely content that Santa (aka the prowler) DID come, stayed in the comfy bed. So with a little prodding, Aiden and Mason were at once both under the tree admiring the gift that Santa brought...
It was a beautiful site, although even more beautiful if the photo showed their faces.
The rest of the morning was a blurr. 
("A kendall and Logan Lightening McQueen)
(sensory overload for Mason)
(uhh WHOSE gift is this??? Meant for Mason, but I think Aiden is claiming it)
(that's ok.. claim it all you want.. Im taking the hess truck brother!)
(even the dog, wants in on the action)
(while poor daddy, puts batteries in toys)
The boys opened their gifts, (well Aiden opened Masons too) and they just played and crawled around and had so much fun. It is just how I remember it as a child. Waking up, tip toeing and the wonder and amazment. I love to relive all of that now, but as a mommy.
The rest of the day was spent with our family. My mom made a wonderful dinner, all Aiden safe. We opened presents, and prayed, and told the Christmas story out of the book of Luke. The day was lovely, ending with a perfect cuddle on the couch with Joey. I feel like the luckiest woman ever. It seems I have almost all my dreams come true and I have only begun.
SO onward to real life soon. Aiden is over due on his lab draws, and me over due on scheduling appointments and getting records sent to a new Dr. Ahhhh that stuff can wait just a tad longer... I am loving the holidays. Even though this year I tried so hard to seperate the "sick child" from Christmas time, I can't do that. I will have to make a special note to 'Mommy of 2007 Christmas'.. don't bother. Let it all flow. Christmas is a time to celebrate Jesus's birth, and also the rebirth of my son. It all connects because it was part of God's plan to connect. And for THAT... I am eternally greatful.
I truelly hope you all had a wonderful holiday. That you spent the time with your family making memories, and continuing on old traditions. Thank you for checking in on us. We love you all,
Merry Christmas
The Hawk Family
Wednesday, December 20, 2006 11:11 PM CST
4 years ago I was sleeping in a bed next to a dear friend who was being tested for living donor for you Aiden. You were with Daddy in Florida, and I had never been apart from you before. I remember thinking, how scared I was not being with you for those two days. You were so sick. I remember kissing you goodbye and praying that you were safe till I got home. But that night 4 years ago my phone rang. It was 4:00 in the morning, and the voice said
"Lisa... we have a liver."
I cried then, like I do now. I remember just saying "No No No..." but really my heart meant "YES THANK YOU GOD! YES!"
"Lisa, it is perfect. The perfect liver" Miss Jill told me.
I found out that you had already been awoken from your sweet slumber in Florida, and Daddy was so brave and getting you packed up for a very important private flight all by himself. How I had dreamed for months of this phone call, of this night. I imagined others hearing the news. We knew you were so sick and it was needed now. Your new life HAD to start now. Your wonderful daddy put you in one of my favorite sweaters, and you climbed on that small plane headed for hope.
I sat in this hospital room (one we have stayed in many times since) and looked out the window at the ambulance recieving bay. It was directly below us. I felt you coming, even though I couldn't see you yet. The other half of me was getting closer, and I just new it. The ambulance opened up the back door, while men climbed out to escort their very precious passenger, I saw you my son, wide eyed and curious.
I remember Daddy coming in the room and us expecting to wait a very long time. I cuddled you and placed you on the bed. I remember acting so normal, but in my head I was thinking. "God will it be the last time I see him smile? Will it be his final hours? Be with my son. God be with my baby."
Then they were ready. No x rays or long wait. It was a rush, a hurry. I wasn't ready. I wasn't ready, but I had been waiting for so long. I remember turning to your Daddy and saying, "why did they bring a stretcher?! Do they think I am not going to HOLD my baby as I walk him to his liver transplant?!" I was outraged, that stretcher seemed SO ridiculous as it drove your records and paperwork down the hall. But you my sweet, were safe in Mommy's arms. You were sick Aiden. But so happy.
The red line on the floor to the OR was where they told me to stop. I looked at Daddy and said, "How come this is so fast!?" They were waving us in. They told me they were doing us a special favor by letting us walk past the red line to another set of big metal doors, and since it was Christmas and a weekend, no one else was there.
Step one to the door: "My baby, I love you."
Step two to the door: "Fight hard my baby"
Step three to the door: "When you are sleeping say hello to your angel"
Step four to the door: "I have loved you forever. I will see you pink and strong and healthy, soon Aiden. It isn't your time to go. You have work to do. Fight my baby. Fight."
They reached and took you from my arms, I turned to Daddy, and he told you to 'fight Bubba'. And you were gone.
You were being carried off, and played with, and sang to by some very sweet nurses. But what you didn't know was Daddy and Mommy stood on that red line for a long time. Staring at that yellow circle on the metal door that read, "authorized personel only". That was You baby, you and Jesus.
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Aiden did you know that Mimi and Grandpa, and Nana and Babu, and all your Uncles, and your cousins and your family was there?! Miss Sara was there too. Sore from her testing for you. DId you know that we layed out on the chairs bonding, laughing, crying and praying? Did you know that in your Mommy's life, I have never seen your whole family love from the depth's of their hearts like we did that day? All for you! We all came because we love you Aiden.
Your Mimi and Grandpa loaded their truck up with your toys and clothes. Your Nana and Babu packed all your presents from under the tree, but you know Santa really had you on a special list that year. We didn't need any presents because you were getting the GIFT of LIFE.
Your surgery was taking a very long time. It had been 7 hours so far. I was very scared, but also feeling prepared and ready for this day. Your Mommy sat in the chair closest to the phone. Infact, I sat right under the phone. Daddy sat next to me. When it rang, it was so loud, but I just prayed and prayed for them to call me. And soon they did:
"We have taken the old liver out. We are now placing his new graft in...."
Oh Aiden did you know that we all cried and cheered and gasped and prayed? We were loud and free with our feelings. Because it was at that very exact moment, you were done with Biliary Atresia, and all that horrible disease was doing to your tiny body. It was gone.
We all held hands together and formed a circle. We prayed one at a time. Out loud. Tears never stopped and we prayed for your angel. You know the special baby that helped give you life.
Seven hours to take your old liver out, but only 3 more to put your new liver in. They called again, I had to be the one to answer, I knew I couldn't even stare at anyone else's face while recieving any news. It had to be my face they were reading. I earned that right, since it had only been months since I had carried you in my belly.
"They have attached the bile ducts and he is flowing bile wonderfully."
Oh Aiden my fighter. I had only seen you pink once. The day you were born. Never again did I see how fair skinned you were. Yellow and green colored your skin and your eyes. Even your hair looked dark, but it was really just clear white snow. But NOW... your new bile ducts were flowing. You would be pink soon, and I couldn't wait to see it.
When the surgery was over, Your doctors came in. They were laughing and smiling and that made Mommy and Daddy SO happy. They told me that you were upstairs getting cleaned so we could see you in your ICU room. We didn't care if you were dirty we wanted to see you right then.
It was 12 hours after we had said good bye at the red line on the floor. But when Mommy and Daddy walked in to your room, we rushed to kiss you and touch you and stroke your soft baby skin.
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My precious Aiden. We love you so much. I love that your belly looks like it has train tracks all over it. I love that your are a fighter and strong and brave. I love that you are sweet and loving and kind. You make me laugh so hard. You say the funniest things. Just tonight, while we looked at your transplant scrap book you said called Mickey Mouse's dog "plud-olph" like pluto and rudolph all mixed up. You laughed so loud and turned bright red. I love you Aiden. I love everything about you. Your stinky feet and and your messy hair. I can't wait to wake you up in the morning and sing to your puffy belly "Happy birthday."
Mommy and Daddy know that being sick isn't fair and that it just doesn't seem right. But Aiden, God does love you and he has wonderful plans for you. Be strong my big boy, and keep fighting this fight. I can't wait to celebrate yet another year with you and your wonderful gift.
Mommy and Daddy and baby brother love you.
Happy 4th Liver Birthday.
XOXOXOX
Friday, December 15, 2006 6:26 AM CST
how can it be that it was already 4 years ago? IN less than a week, it will be his anniversary. A time of celebration, a time of rememberance, and a time to mourn his angel donor.
I always think for the other 11 months of the year I am NOT going to "go back" and do this. But then December hits. The lights, and the smells, and now the old sweaters my sick baby used to wear are warming the arms of my Mason. How can I not GO Back sometimes? Am I to forget forever what we went through? It has been ONLY four years, yet it feels like it has been SO long.
Who would have thought that 4 years ago today I would be getting my baby ready for yet ANOTHER scope of his esophogus. To take a machine and burn down his veins that were bleeding in there. I remember sitting there this paticular time at All Children's. It was now so common for him to be getting scoped, it was routine. My mom and I were sitting in the waiting room, adressing envelopes for thank yous for families that participated in a fundraisor we had for him. We had all our cards lined up, on the table just doing it like it was nothing. I see Dr. Reinstien and he says, "His varicies are much bigger than last week. I am afraid his portal vein has thrombosed. We need to call Atlanta now. We need to get an ultrasound."
I remember thinking, "Oh NO.. this is bad." There he was. Once plump and chuncky at 9lbs at birth, and now, yellow skinny and in such danger. He had already had so many bleeds I couldn't count. ONe that will never leave my mind although I wish it away forever. His PELD was a 40. He was sick. He needed a liver.
Every year I think, I am NOT going to do this. I am NOT going to relive that time. But WHY NOT?? God gave it to us, it can't be erased, and then he took it from us.
Most all of my clothes I had for Aiden are gone. I gave them away. They just made me think of bad times. I think of the hospital a lot. BUT there are a few things that make me have happy thoughts, so I kept them for keepsake. Little did I know for his baby brother to wear. SO it was just last week, at Aiden's soccer game, I dressed my Mason in Aiden old sweater. Oh my gosh... They do look alike sometimes. It brought so much back. All of that time. How precious it was to see my baby wearing this sweater that used to clothe his brother, and then at the same moment turn my head and see his brother alive, standing on the sidelines of soccer, pouting and being sassy.
It seems as much as I try to escape what happend on the BAD end of 4 years ago, I can't because in 1 week the GOOD end will start. Does that make sense? DO my tear that fall on my cheeks make sense? The migraine I suffered from two days ago make sense? I probably need some very expensive therapy, but... I know hang in there because the celebration is about to start. Just 6 days and my baby, my 4 year old will be celebrating his gift of LIFE.
Stay tuned. Many love and hugs, and PLEASE be an organ donor.
Lisa
Mommy of two wonderful boys
Sunday, December 10, 2006 2:14 PM CST
hit play above, and turn up the volume...
Ever hear that saying, "Good things come in small packages?" I know a good thing in a small package. Her name is Jillian. Just 9 years old. A very very good 'thing' in a small package.
Jillian, her amazing family, and the Wyoming Antelope Club, Florida Chapter... suprised me with a gift. I had no clue, never even crossed my mind when her momma told me that she was doing "organ donation" as her gifted class project. I had no clue that meant MY organ recipient.
I am stunned, speechless, humbled and thankful. The Gift you gave our family was so generous, and reminded me of how many special and loving people there are in this world.
I shoed you out my door, so I could cry on my couch. SO I could cry in my car on the way to the grocery store, so I could cry the next day... your gift was perfect timing. It was from God. THANK YOU so much. SO much.
Humbly yours,
The Hawk Family.
Wednesday, December 6, 2006 6:40 AM CST
Sunday, my parents took the boys while Joey and I had a fantasy (his fantasy- and don't let your minds sink to the gutter folks) birthday alone. This consisted of getting his net and poles and tackle, getting on our little fishing boat, and going fishing. I, of course, was doing my best to fake it that this was exactly what I wanted to do with no kids and a day to ourself. But once I got out there on that boat I had one of the most amazing days ever.
First let me say it was 83 degrees here Sunday. And not a cool breezy 83 I mean a FLORIDA 83. WARM and beautiful. Right after we put the boat in the water, I am sort planning how I am supposed to “lay out” between the trolling motor and the bait buckets, I hear something….
“PPFFFOOOOOOOSHHHH”
I know exactly what that is. If you heard it you would know. I looked 10 feet from our boat and two dolphins are come up, blowing air in a spray that makes a rainbow above them. Humping on and through the water. Then I FEEL a bump. There they were, on their sides, looking up at me, touching our boat! Playing with us. Joey wasn’t moving the boat and we were just amazed at these beautiful creatures. There probably was a family of 5 of them, circling us and coming up to out boat. If I wasn’t such a wimp I would have petted them. They were surely close enough.
After I am done screaming and yelling and cheering and yes… crying. I mean Come on.. it was so beautiful. I settle down and Joey drives the boat forward. I hear him say to me, “what is THAT?” and we both see it.
A nose covered in whiskers just dragging the waters surface. And then he dives deeper. Slowly, barely moving, but enough for his big grey back to hump out of the water and his tale to come out as he went below. His tail was all knicked and cut up, but so big. I was trying not to scream with delight, but it was surely the closest I have ever been in the wild with a manatee. He was also 3 feet from our boat. 100 yards from our family of dolphins. Joey and I were like two small children. Squealing and just so excited. (I am going to hear it from him when he reads that I wrote he "squealed") Joey is in the boat a lot and sees the dolphins often, but this was a first to be so close to the manatees.
Now of course the draw back was I was like a neurotic Mantatee saver the rest of the entire boat trip. Waving boats down to go idle.. making Joey drive slow even in the deep waters. At one point this nice couple went past on their jet-skis and I asked Joey if it was weird if I told them about the manatees… He said, 'it was weird that I was flagging strangers down', and so instead I tried my hardest to stare at them.. I was hoping they would feel my intense gaze and turn to have eye contact with me, so I could wave, and then if they waved back I would just say, casually to one friend of the sea to the next, “HEY THERE ARE WILD SEA ANIMALS OVER THERE! MANATEES AND DOLPHINS!”.. but my intense staring didn’t work. And they missed out.
We got out to the deep, and in all the years of living here and all the weekends Joey fishes in the same spot, neither of us have ever seen the water so clear and like glass. I could see every tiny grass and fish and it was such a treat. Stingrays would just fly through the water, and we even spotted another manatee about 10 feet from our boat.
I was so glad I went. It was so very special. Joey and I glowed the rest of the day. (again- him glowing was more like sweating in the 83 degree heat) All the stress and anxiety from the biopsy was washed away. It was a wonderful birthday for him. SO much better than the last two we spent in the hospital.
While we were out there I was frantically feeling the need to write something down. This NEVER happens, but a Bible verse kept coming to my head. And lets face it, if I even know where half the books in the Bible are, I am doing GOOD! So I kept thinking, "Matthew something 25 something" It just fell onto my heart..
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body.....Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? See how the lilies of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these...Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:25 and more
Now I was really feeling like the dolphin whisperer, coming up with good Bible verses that totally applied to our wait for the biopsy results. There was no anxiety left we knew the tests would be fine. I was more being driven crazy by the wait but... no worry in my heart.
SO we spent the rest of the day on the water, stingrays flew through the water like birds, but as usual not one fish could be found. (fine with me.. I just had a 'deep moment' with the sea animals; it didn't feel right hooking and catching one for "FUN")
IN other news SANTA WROTE AIDEN BACK! Amazing how Santa is SO prompt! I am sure you recall Aiden's letter to Santa, you know the one where he wanted his toy from the gas station? The Hess Truck. Well Santa has checked his list and YES Aiden was indeed on it!
When he saw that red envelope and his name on it.. "with some other numbers" he freaked out. 
(I look at this picture and think WHO IS that little boy? he has gotten SO big)
Aiden just thinks this is the most amazing thing. He has decided to write him another letter for Mason. He is working on it right now. With out my help. I am assuming it will consist of drawing and scribbles, but I know he is concentrating, his tounge is sticking out and all.
Anyway, things are good in the Hawk House. Soccer practice tonight, and game Saturday. Aiden missed the picture day, but we know how that goes in the Hawk house so I thought I would post a picture of home made soccer photo. 
I hope you all have a wonderful week. Let me add on more thing:
Joey, Happy Birthday. I love you so much. I am so glad we have each other in this life. I am so thankful for your sweetness and your strength. I can lean on you, and you never give way. You are the best father I could have dreamt of for the boys. I am so glad we got to spend that day together on the boat, and the day after and everyday from here on. Happy Birthday and tonight I will let you share the blanket, even if your feet are always cold.
Love your wife, Lisa
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Prayer requests:
Baby Donovan needs your prayers.
Little Ellis passed away, please pray for his family.
Please pray for Jon, as he is getting treatment and we want him to be healed. Pray for this family who also chooses to walk with joy even in the life they have been handed
Monday, December 4, 2006 8:42 AM CST
preliminary results say:
"No sign of malignancy"
Praise God
The nurse said, "we will call as soon as the chromosonal and (the other test)are back. It will probably be a week from now."
Amazing how something 'I never was worried about' has suddenly making me feel light as air...
Thank you for your prayers!
SATURDAY, December 2, 2006 9:43 PM CST
Saturday morning: WHO was that person who was so worried yesterday? LOL I am just updating so you all know I am not about to foam at the mouth with anxiety.. I am actually feeling pretty good today. Slightly miffed they didn't call back, but not really scared or worried. Logic has settled back into place and slapped me upside the head a few times. BUT I still want you all to keep these sweet cancer kids in your prayers. Baby Donovan is so sick, and Hunter is sick, and it just makes me sad. SO thanks for the support and the guestbook entries. (I know you were just curious about the secret number you had to type in haha) it all means so much.
Prayers for Haley's mom as well. This is such a terrible time of year for them. It has been only 1 year and I think people just expect them to be "moved on"... how do you ever move on from that? You don't. Forever missing someone, and with the pressure by loved ones to hurry past grief just makes it harder. Thanks for praying for them.
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FRIDAY'S UPDATE:
So it is 6:30, I am sitting waiting..... all day waiting.. My children have been with my parents all day. Waiting...Ok yes, and when appropriate with a glass of wine, or two. Let me just be honest for a moment. I mean real to the CORE honest. IN all of this bone marrow junk, I never thought he could have cancer. Never crossed my mind.. He is a kid on drugs that DOES THIS. Yes it is only a 3ccurance of pancythemia, but it DOES happen. Not typical, but it happens. MY transplant team may have never seen it, but SOMEONE DID to make it 3f an occurance. No one ever once has been worried about this. Me? I couldn't even FAKE being worried. I have been very confident with this whole thing... BUT today, this waiting, it is torture.
I called at 12:30 like they told me to. They told me the nurse wanted to talk to me but she was busy and needed to call me back. Immediate panic. WHAT? TALK to ME!?- (uh yeah Lisa what did you expect when you call? get a grip.)
SO I wait... I call back 4:00. I know, I shouldn't do that, but It IS a friday after all, I am not taking chances here. Immediatly I have more inner diaglog:
" How could they let a mommy wait over a long weekend for results? Wait, that must be a GOOD thing. OF COURSE it is a GOOD thing Lisa. GET A GRIP"
But I still call at 4:00. They said they will call me back with results between 5:00 and 5:30.
It is 6:45. So I am sure the nurses are thinking, "It is Friday, a weekend, lets go home call this mom on monday because she already KNOWS we don't think we will find anything". And that was true... until I sat and started waiting.
OK back to the CORE HONESTY. I have cried more tears today, (with the help of my Beth Moore Bible Study- the study of Job, yep Job) than I have in a while. I have wept thinking about the Mommies that get that call that say their babies have cancer. I have wept FOR them. I weep for the children we send care packages through the foundation with cancer (the largest majority of who we give packages to are cancer kids) What and awful beast of a disease. I wept for Lizzie, and Hunter, and Kendrie, and Matty, and ohhhh Sarah S, and all my little sweet cancer kids.
"MY cancer kids?" you ask? Yes. The ones that I love. The ones I have loved since I read their sites the first time. Maybe like you love Aiden. The ones me and Cheryl have loved for years, the ones she has linked me to. Sending packages to them. Praying and praying for them. Asking for mercy for them.
So I wait, knowing that we already got our rare terrible diagnosis when he was just a tiny infant. I wait with sadness and empathy for others who have waited this wait, but with the sadest news to follow. I hate this wait. It makes me think of the wait of when he was only a baby. Waiting in that dirty surgical waiting room. Standing there, sick, shaking, waiting. My belly was still puffy from JUST giving birth to my first baby. (what's my excuse now you ask?) It wasn't right. That wait wasn't a wait any one should have. When the phone rang I would shake, run, knocking everyone down in my path. It had to be ME who talked to them. My baby who was JUST in my belly was on a surgery table open and sick.
I want this phone to ring. I am writing this now, it is close to 7:00pm. I won't post it till past 9:00pm, because I am a dinasour on dial up. And I don't want to tie up my line. OK maybe I'll give the doctors till 10:00pm to call me. Yeah that seems more reasonable. Just in case.
If you haven't started already, just pray for us. Thanks so much
Friday, December 1, 2006 5:27 AM CST
home.
The best word Joey could use to describe the biopsy was, "Barbaric". and Joey is the one with the thick skin. So weird becuase when you have a liver biopsy he is TOTALLY out and they make you sign your life away. All the risks and all the scary things that could happen. But with this, he was basically totally awake and no papers to sign. Joey also said "there just HAS to be a better way to do this." My heart ached for all the sweet little kids who have to have that done. But I am now certian I am going to have the foundation donate a few small prizes to the bone marrow biopsy room.
I will call today for some preliminary results, but the real ones will be back in 10 days. They need to do 3 different types of testing. One is a chromosonal one to see if he has changes in his bone marrow. (bad) and the one I find out about today is just something they can see under a microscope the cells morphology. Then there is some other one too. Basically I will call today.
Noone is really concerned that he has a real problem here, but they all are fairly certian his medication is causing this. But once we know for sure then we can deal with this in a more dierct way.
He thinks he had an IV in his butt. (his words) and he he said he remembers crying and crying. I hope when he wakes up this morning all of the memories will be lost in the versed la la land. He has just a band aide on his hip, and last night he was active and physical with no pain. They said he would feel the soreness today and tomarrow.
Anyway, Thanks for the kind words and prayers. You guys have helped so much. I am exhausted and have a lifetime worth of cleaning and laundry to do. HUGS
Thursday, November 30, 2006 11:23 AM CST
Update 4:15
He is getting the biopsy now.. I had to leave the treatment room, I couldn't take it anymore.It felt like I was going to kill everyone who made my baby cry like that. He is with Joey in there. Daddy's are made for this stuff I think. He was screaming and screaming... I pray what they say about the versed being an amnesiac is true. I hope he never remembers this. I am so sorry my little boy. I love you and and just so sorry.
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12:00pm update
OK so we have a plan.. and it is a good plan. Aiden will be getting a bone marrow biopsy (boo hiss) TODAY and then GO HOME TODAY!! (whoo hooo!)
Not happy my baby has to have a bone marrow biopsy, but I am happy this will be over today. He will then go home on oral cipro afterwards to cover him IN CASE it itsn't the bone marrow making the WBC increase. does that make sense? Liver friends? you following me here?
Basically all I can think about it that last thing.... GO HOME... ONe night on this chair as a bed is enough.
Aiden has been through so much and I just want to be able to cuddle him and love him at home. Kiss all his bruises on his arms and then after the biopsy the bruise on his hip/back. I just want to be back wrestling on the floor with the boys and Daddy and NOT Here. Plus we have just about given him all his Christmas Presents early haha.
Sunday is Daddy's Birthday, I can't WAIT to just be HOME on that day, last two years we have celebrated in-patient.
PLEASE PRAY for Aiden. Today may be tough, but hopefully we will find out what we want to hear, and be done with this whole thing.
Thank you for all the signing of my guestbook.. we love you guys so much and feel so supported by you.
Love, Lisa, Joey, Aiden and Mason
Thursday, November 30, 2006 7:36 AM CST
day two in the spa-ala-hospital
we had the most amazing visitor this morning
music therapy...
this was a first for me. I have never. ever. ust makes me sob and cry like a whacko thinking about how beautiful it was and I just can't help but think of Haley. It was soooo beautiful. Amazing.
she wrote a song about Aiden and this is how it went... he filled in the blanks.
This is a song about Aiden:
Aiden's favorite color is: red
Aiden's favortie food is: chickens
His favorite animal is a: frog
Aiden to likes to: play trains
But he doesn't like to: eat vegitables
This is a song about Aiden
I was having a bad morning, (basically a drama centered around my coffee, getting it then spilling it), but this changed it all around.
Aiden's labs are back.. and after 18 hours of IV fluids he is defintly NOT dehydrated... hopefull we can stop the fluids. and then see what others have to say.
labs look pretty good today, I hope it means we can leave tomarrow or something.
I will update later with information from hematology.
HUGS
Wednesday, November 29, 2006 6:08 AM CST
UPDATE: They are admitting him... his pediatrician called me this morning and said she wants him in. IV antibiotics and IV fluids... but mainly to see hem/onc... she wants to do that bone marrow biopsy. We will see what happens though. Anyway, I told him, and he said "THAT is what I said LAST night! I am sick!".... He knows, it is his body.
Anyway... below is the other part of the story. thanks for your prayers, I am sure this is just a quick little deal and hopefully just to be on the safe side since his WBC is so high although they think it is related to the polycythemia at this point.
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earlier update
Well Aiden is sick. It started yesterday with diahrea. I was assuming it was allergic at first but then it kept on coming. He was feeling fine, then later in the afternoon I am noticing how quiet he is while he was watching TV. Yep, he was asleep. His little cheeks were flushed and red, and I felt his head and knew he had a fever. UGH!
So he wakes from his nap (which is a bad sign that he is asleep in the first place) and he starts crying and screaming. Joey come home, and my pediatrician (since it was after hours) wants Aiden to go to the ER get labs run.
Aiden wanted Daddy to go down there, and of course I am sitting there thinking.. NO! pick me ! pick me! but Joey can handle it and I guess he felt I needed to sit and worry from the best vantage point. With a sleeping baby and no noise in the house. ALONE with my thoughts. (what a scary place to be)
Long story short. They did a U/A on him and it was normal. BUT Aiden's labs are terrible again. Hemoglobin is so high. RBCs sky high, (the reason for his bone marrow biopsy is back) all his labs are crazy. WBC is high at 19.79, (nuetrophils are sky sky high 14,900 is his ANC what does THAT mean?), and dang it (insert more offensive word if you care) his kidney (creat only) function is high. Oh man oh man! I talk to Aiden's pediatrician on the phone and she says that she wants to admit him if he doesn't have some explaination for the fever. We get the labs back and after seeing the kidneys are playing a roll in this I guess they decide to send him home, with lab follow up in the morning. This is his thing. He has definitly hit a pattern.
My pediatrician doesn't want Aiden near the hospital unless he would need IV antibiotics or IV fluids and he needed neither as of last night. There is SO much sickness and germs this time of year. So she sent us home. (I kept telling myself.. I trust her.. I trust her.. she is so smart.. but I was scared I will admit) So we are to get repeat labs this morning.
SO last night, Aiden woke up in the middle of the night trying to pee..."but it just goes in and out, it won't come out" This is what he tells me. He goes back to bed after not peeing, and then wakes with another fever and is SO thirsty. Crying real tears for something to drink. We run and give him gatoraide. I will admit, that I was really scared. This has never happened with him. But we gave him some tylenol and he went back to sleep. He is sleeping right now.
I will let you know what labs say this morning. We need to call his nephrologist this morning as well to talk about his creatine being high, his crazy thirst, and the high BP we got too. (I don't understand the thirst thing.. he does this everytime!) Just pray that he feels better when he wakes. Although the bone marrow biopsy is defintly in the future for him now. The repeat of this, including the high wbc is the thing that they were looking for in the first place. All his cell production high high high... and that is weird weird weird.
Thanks for praying... HUGS and love
Friday, November 24, 2006 12:28 AM CST
*****NOTE: My guestbook has been getting hit with some pretty SICK things. I am just shocked at the vulgarity that would strike at a SICK CHILD's website. But since I am no fool, I know it is all over this world, we have added one of those little things that makes you put in the number when you sign Aiden's book. Just so no automatic creepy loosers don't keep signing his book with vulgar words. I hope you all keep signing and I apologize if your eyes were bleeding when reading my 4 year old's guestbook. YIKES! SO problem solved. (and if you missed the excitement you can call yourself's lucky I guess haha)
continue on with the more important stuff... my accounts of the holiday shopper...
Is it called "Black Friday" for the "black circles" under my eyes? Or is it my swollen "Black and BLUE feet"? I am trying to figure out why we say BLACK friday. I mean I can see GREEN for the money that I just dished out. Or maybe RED for the bad attitudes I found in the yarn department at Micheals.
Yes folks, I did it. I braved the mall, the stores, the ROADS. I was just like that commercial with the husband and wife laying in bed, the alarm goes off the man rolls over to shut it off, rolls back and there is his gleaming dressed wife already headed out the door. Yup that was me.
If you KNOW me, you understand the actual hilarity of this. I HATE shopping. I mean I can't even handle the 7-11. My mom and I went to Miami for the weekend, planning on hitting some serious stores for shopping, and I look at her and say with my pleading eyes, "Mom. I would rather you shoot me in my brain and get this over with." My mother: Adorable, matching, organized, cute. And me: NOT. I get sweaty armpits when I think about shopping. Yet Today... I did it.
So I get up and yes before the SUN was risen, I am driving to Micheals. (this should say something about me in itself; I choose Micheals as my number one store..) I get there all because they have two bonus's... they sell Thomas there, and they sell CRAFTS and scrapbooking. So I think, Hey I am safe. I am at a craft store...no one is gonna be mobbing anyone or being stupid like you hear about. UHHH I guess I wasn't really thinking. These women with their coupon books.. THEY are the professionals. Don't let their shopping cart full of cross stitching threads fool you, they are vicious I tell you!!!
I see they have these tiny individual Christmas trees there for $2.00. I think, PERFECT for the foundation I can get all the kids when we visit the ICU to hand out their gifts, their own Christmas tree!
IT IS 5:00 in the MORNING PEOPLE!
The sweater knitting, cross stitching, ladies... they WANTED those trees. So there I was.. I put 6 in the cart and muttered something like, "Ohhh these would be perfect for the sick children in the hospital on christmas"...thinking it would tug a heart string. It made them grab faster. And then once the grabbing started for these tiny trees, it woudl catch the eye of another savy crafty lady...like a fish when you put something sparkly in the water and they all flock.
Yes so I am feeling guilty. WHY? Oh it is just what I do best. And i decide to put 4 in my cart and drive around the aisle. Pretend I am done. You know FAKE them out. My plot worked. They must have seen a flash of excitement in Aisle 2-tempura paints. When I got back to the aisle I find 10 more trees and I promptly throw them all in my cart. ALL of them. I felt greedy and yes.. guilty. (did I mention I am NOT a shopper? all these EMOTIONS when you SHOP?!) BUt then I felt it.... a bubble of excitment. The Thrill of the hunt.. and then the capture of the prize.
OK yes. ridiculous, but this only wet my taste buds for bigger and braver territory: THE MALL.
OK so that is where the fun stopped. ANd like an adict looking for that first high, I leave the MALL in disgust and move onto, (ohhh shudder) TOYS R US.
BLACK Friday. Maybe it means "Black/ dark room where you nurse your migrane".
SO home now, I have my goods. I have my victorious items for the HV foundation, and even I am feeling good. Aiden sees me come in the door, and says "MOMMY, what did you get me?! DID YOU SEE SANTA!" I have to think quickly, If I tell him I got hims something he will wear me down like a hostage. If I LIE to him he will crumble in to a ball of self pity (you know the child is NOT perfect ALL the time right?) SO I say,
"Aiden Mommy needed you to write that letter to Santa! I went to the store, and he needed the letter!" I search his eyes. Will it work?
Dear Santa, I love you. Hess Truck please, Aiden.
Yes and all of that shopping and searching, and coupon clipping and people sassing, "black circles" and "Black feet"; and all of it...
MY CHILD ONLY WANTS A TOY FROM THE GAS STATION.
Oh the season begins, and it isn't even December.
Hope all of you have a wonderful weekend trimming trees and being with your family. Love and hugs
Lisa
Tuesday, November 21, 2006 12:07 AM CST
Today we went to the cardiologist to check on Aiden's heart as a baseline for his hypertension. They did and EKG and and echo. All was perfect. The doctor said, "His heart doesn't know his blood pressure is so high." That was GREAT news. We won't need another echo for 6 months. Also Aiden's BP was normal AGAIN. The meds are really doing the trick now. We must have found just the perfect balance. His BP is just so much improved. PHEW!
We see the kidney doctor tomarrow. I am ready to talk with him about all I have thought of over the last month. They are also giving him an ambulatory cuff (or something like that) to just measure his BP all day long. To catch the spikes. They will do this for just a 2 day period. So that will be no big deal.
Things have been AMAZING here. I feel like we have time warped back to a very healthy time. Aiden's allergic stuff is REALLY really under control right now. I am just so thrilled. His labs were perfecto last week. I never want to go back and re draw...hahaha... and his BP is under control. SO I have so much to be THANKFUL for this week. SO much.
I always look at my family and think how thankful I am. I love my husband so much. He is my rock, best friend, and my love. The best father to our boys. I am so thanful for my children. My boys who have such a strong bond. Love that is so deep, only brothers can share.
The list of things I am thankful for just seems to go on and on... I thought how could I possibly share all that I feel? It would take a thousand words to tell you just one day... and so here it is:
A picture is worth more than a thousand words... so enjoy.
I am thankful for this...
for this....
and this....
and this....
and this....
ohh and most certianly this...
and this...
and getting through this...
Thank you the simple things....
Thank you God for this face....
and SO thankful I had the camera on THIS day...
and us...
and most thankful for this....
Happy Thanks Giving!
Love,
The Hawk Family
Thursday, November 16, 2006 2:02 PM CST
Biopsy CANCELLED!
SO the weirdest thing happened! My parents watched Mason, Joey and I took Aiden to the hospital. Once we get to the hem/onc office they decide to do on last CBC before his bone marrow biopsy. And you know what that test showed?? His cbc was NORMAL! I am talking every single number on that cbc. (last friday 9 values were off on his CBC not including his diff-) For 1 year Aiden has had weird hematology and today... normal.
SO Aiden's hematologist came in the office and all looked confused... but we figured, why test today? It is normal today. It isn't like he won't get labs in a few weeks anyway. SO if his numbers are terrible we will do the biopsy then.
The biopsy does hurt, it is very invasive, and Joey and I, although we couldn't believe his labs were so normal, were thrilled to leave the office with just a blood draw. Joey muttered something like, "you know they will be terrible next week" and I thought..."what if IT is gone?" you know IT being the weird reason we were getting this biopsy in the first place?
But I am praying whatever that has caused his bone marrow to over produce red cells for over 9 months has just vanished. Joey and I are just so thankful for your prayers.
Love,
Lisa and Joey
Thursday, November 16, 2006 6:22 AM CST
Aiden will be getting his bone marrow biopsy this morning.
I will update later, keep him in your prayers.
Love and hugs
Lisa
Monday, November 13, 2006 7:30 AM CST
I am confused, is it the middle of november? Because it was 82 out yesterday and it just seems like our weather men here have some issues. THIS is the cold front? C'mon..
I was walking in Sams club yesterday and was just so annoyed at all the christmas stuff everywhere. I just kept thinking, "It is SOO soon to be selling this stuff!" and then I hear someone say, "just 6 weeks till Christmas". Um hello... why is THIS a news flash for me?! I mean I have been telling Aiden since December 26th of LAST year that if wanted a toy to put it on his Santa wish list, but now the wish list is one mile long. I just think we are deleting it and starting fresh.
SO far THIS is what Aiden wants
A train track, NOT THE THOMAS ONE MOMMY!I WANT THE ONE LIKE THEY HAVE AT NATALIES HOUSE! (uhh "natalie's house" is Give Kids the World in Orlando. This isn't her house, it is where we just saw Natalie They must have a train set up larger than the entire front end of my home. Yeah, No can do Aiden.)
A monster truck. Not a play one.. he wants a real one.
Thomas the Tank Engine (AIDEN! this just seems silly to me since he has 200 Thomas's. And I mean the actual BLUE train #1)
I told Aiden about his friend's Spencer's wish list which was more relistic to give him an example. 1) growy alligater thing 2)sponge bob watch... etc.. I look at Aiden and say, "Make a list that is something like that."
and he says
"OK! I want a growy alligator thing, and a spongebob watch...and a train like a natalies house, and a monster truck...." So we just now added to the wish list.
SO christmas is coming, which means, Aiden's 4 year transplant anniversary is coming. I always think, "how can it be his FOUR year anniversary when he is only 4 years old.." then I remember ALL of that happened when he was a baby. Why then does it all feel like today? Why is it I can't remember what I ate for dinner, but I can see every single nook and cranny of Aiden's ICU room on Christmas morning 2002.
Tis the season, the season of something always bigger than Santa and lights. Of course it is The birth of Jesus, and then the re-birth of Aiden. So even though it seemed to blind side me (yes the summer like weather has A LOT to do with it) I am getting into the spirit. Ready to decorate the house, and pick out a tree... oh wait...it isn't even Thanks Giving yet.
I just hate it when people start Christmas season so early
hee hee hee
err
Ho Ho Ho
Love Lisa
Saturday, November 11, 2006 11:01 AM CST
This is Karen(Jen & Jon's mom). I'm updating for Lisa, she is away from home today.
The little baby that Lisa has asked prayers for passed away last night. Jackson earned his angel wings. Please, Please be an organ donor.
Friday, November 10, 2006 1:44 PM CST
that was a quick update.. lol (for my rant about organ donation see journal history.. or spare yourself the agony and just be an organ donor and tell everyone :D)
I just wanted to update asking for prayers. Aiden has had labs 3 days in a row, by today we had to lay across his body and hold him down. He is over it. He seems healthy enough but his labs on Wednesday looked fine, then we saw hematology and they were all crazy from that draw, so they made me go back today to make sure he wasn't having something go on. His WBC is high, so we are doing cipro on him. although he seems ok... If he has a fever I am assuming we will be admitted for some IVs. His glucose STILL high (yes fasting...yikes).. his diff is so weird.. his ANC is 9,400.. what they heck does THAT mean? OK so I won't bore you with more numbers but his labs have just a bunch of H's and L's next to them (meaning Hgh and Low) so I am just asking for prayers. (uhhh as usual liver is fine whoo hoo)
The Bone marrow biopsy is scheduled for Thursday with hematology. Dr. Barbosa will be doing it. They said just some numbing cream on his back, an IV in the hand with some pain meds.. YIKES! But he is an awesome hem/onc doc so I knows what he is doing... still yikes! Aiden had to be SAT on to do labs today... (one more YIKES for good measure)
Pray for Jackson.
www.caringbridge.org/visit/jacksonriley
Lots of love!
Thursday, November 9, 2006 8:28 PM CST
warning: it LOOKS like a harmless update... it SMELLS like a harmless update... but it isn't.. rant ahead.. warning read at your own risk
SNip snails puppy dog tails?
Ok I don't have a clue what a snip is... unless it is snips out of my curtains with scissors. Or maybe snips out of my furniture with constant banging from train wheels. Maybe snips are when he is sassy and "snippy" saying "I TOLD you so..." then of course with a cute little grin that makes the sassy seem sweet.
Snails... yes this one I can attest to. Yes snails and little boys. I have learned that a snail can live aproximatly 29 hours before he dries out in a bug containor, but always leaving me with the question, "where does his little snail body go? always just the shell" Life's deep mysteries
Puppy dog tails... Well since Rolex's tail is aproximantly 1 inch long we have no tails around here. All though one inch IS indeed long enough for a 13 month old to grab ahold of and tug.
So forget the Snip snails and puppy dog tails I like MY version:
sticks, stinky feet and things that go beep
Mason who is now only 13 1/2 months old pushes a car/ train all over the house when he crawls. Just sticks it in his fist, and crawls and pushes. I could watch him do this all day. And then there is Aiden. Oh my sweet. Whom I once tortured in linnen smocking till he was 3 years old, is now always dirty with something gross in his pockets. Rocks, wet matchbox cars (why are they wet?!), old peices of bubble gum.
And this is amazing to me. A dream come true. When I held that pregnant belly at my 20 week ultrasound with both boys... I saw this. I saw all of this in my dreams. Today again, I am rejoicing in the now, hugging my boys, loving them, and being thankful for what we have. Because again today... right now... another baby fighting for his life.
I pray to God that little Baby Jackson , will be pushing cars on his knees, digging rivers in the mud, and living life.
I can't help but say it again. please please tell others about organ donation. You all may think.. "well geesh Lisa, we have heard this before. We are donors we are donors..." (and thank you for this.. I love you for this.. I just can't tell you thank you enough for this... but for those who don't want to be donors cause it is "GROSS" ..... keep reading-- here is where the warning applies)
Did you know...that putting it on your liscence means nothing? Did you know that?? Because your next of kin makes the final choice. SO tell them. Tell them today... "Hey by they way, I know this is weird.. but I want to be an organ donor." There done. SO easy!
You know I will just go out on a limb and just say I used to be really tollerant of people who chose NOT to donate. And know I am not talking about the ones that don't really understand that the myths are myths.. I am talking about people who get what it means, gets why we do it... and just say no. I used to think "it is their right"... but I am wayyy over that. Yeah I know it isn't Politically CORRECT... but it is morally correct.
Did you know that every major religion supports organ donation?
Did you know that 17 people die every single day waiting. And that little statistic includes CHILDREN. These are not murderers.. or drug addicts... or whatever people say they are.. they are MY FRIENDS KIDS. My friends babies.
While I am on the roll... let me also say,
I learned a new name that is used in the Bible for God. It is:
Ancient of Days....
Do you know what that means? It means Judge.
He loves us, waits for us.. but he is still our Ancient of Days.
Have I listed them here?
Jayli
zane
Ava
Gracie
Brianna
Mitchell
Jacob
Brook
Haley
Fin
Rani
Sarah
Natalie
Allison
Romina
this week... Dillon
Oh Ancient of Days, hold those angels in your arms.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Medical news:
Aiden will be having a bone marrow biopsy on thursday. We saw hematology today, and it is time. I will update again with more one that.
Fun news:
We saw sweet Natlie Bear today. We stalked her and hunted her down on her MAKE A WISH TRIP to Disney... I will update on this next time. XOXOXOX
Happy 36th wedding Anniversary Mimi and Grandpa (my parents) ;)
Happy Birthday Ron XOXO love, your sis.
Tuesday, November 7, 2006 11:46 AM CST
Well the party in Atlanta was wonderful! There was many special little moments that I shared with the kids or parents. I was touched that they were touched. My favorite part was when a little boy came in who looked so tiny and sick. He was shy and quiet and in a wheel chair. I had bought a balloon for Aiden but when we saw this boy look so sad, even at the party, Aiden crept over to him and handed him his balloon.
Aiden used his tiny baby voice and told the little boy, "I don't have an IB (IV) in my hand, you can have my bawoon" The little boy took the balloon almost in slow motion, still not speaking.
His mommy told Aiden (whom by the way was wearing an HVF shirt and no one knew he was also a patient of the hospital), "Ohh thankyou. He has and IV because he had something called a LIVER TRANSPLANT" she looked at Aiden and just smiled. I have smiled that smile... I know what she was thinking.
With a tug of his T shirt he shows her his tummy..."Oh I had a liver transplant too!" and with that the mom's head whipped around and she saw Aiden as something different. Not just a nice little boy sharing his balloon, but as HOPE. Hope for her boy... whom was also 4 years old. Hope.. my Aiden...that my friends, was a wonderful feeling.
So the party was amazing, I was touched by the beautiful array of children. Infants, teenagers, bald heads, puffy cheeks, big tummies, and every color in the rainbow. Illness doesn't descriminate and these children are not statistics. I loved to watch the kids pick out their present on the gift table. Siblings and children all got a gift. It WAS a birthday party after all! But my favorite was the nurses who would come in like scavengers DESPERATE for "their kids" who had nothing.
"I have a 6 month old, a 3 year old a 13 year old.. they have nothing. Can I bring them something?" it was the same story that they all had. And of COURSE we said YES! that is why HV foundation HAD a party. So the kids could have something that would make the smile. Although the nurses GLEAM was nothing but a testament to how much can be done with just some kindness.
Aiden had a great time, mainly stalking the Vincent children. Poor Kendall.... she never knew that a 4 year old could wear her down like that. "wanna play? wanna play...." Of course Aiden is a minature Nick (Haley's oldest brother) so he enjoyed taking Aiden on rides with the luggage rack and in a moment of desperation to wear Aiden out he let Aiden "run the stairs" for some time.
Healthwise: Aiden has been doing better with his BP. He has been spiking at times in the day and they suggested him wearing a BP machine for 2 days all day I guess some type of portable one, to keep an eye on the peaks it reaches. He will be seeing the hematologist in their office thursday, and then we will be scheduling some testing with them and nephrology. They want to do it together since it will require anesthesia. We see Nephrology next week, and then cardiology the next. Aiden will get labs in the morning, and I will finally get that red cell mass drawn tomarrow as well. He is all hivey lately, but it reminded me how long we have goen with him under such good control. The steriods may be bad for his body long term... but short term, we are just thankful for them.
I will admit, my heart is heavy again today, even though I feel so lifted after the HVF party, I found out of the passing of another angel. Baby Dillon. Waiting for his liver this sweet baby trasformed his sick body and gained new wings.
It makes me want to go on a big long rant about how it should be against the law that people die waiting. That CHILDREN don't get a chance at life all because we dont' donate organs. But I don't feel like ranting.. I feel defeated in this area. SO many children. Sooo many.
This little baby boy followed a similiar time line to my Aiden. Born in April... BUT not transplanted in December, instead he never got a chance. I look at my little Aiden and think, oh how I wish Baby Dillon could have AT LEAST had the chance. How I wish Haley could have AT least had that chance... how so many could have ... they should have had just a CHANCE at life.
So instead, our support group, gathers together, cries together and endures. All of us hoping there is no more losses.
Little Dillon, I can see you being held by others who went before you. I can see a little a little Jayli sharing her paci with you, and little Romina kissing your cheeks. I can see Angel Haley singing your lullaby while Zane cuddles in for a nap too. Is that Brooke running around in her go go boots? And Rani and Fin playing with the stars? I see your family of children, all of our children, welcoming you Home to Heaven.
Please be an organ donor and please tell everyone you know.
Love Lisa
Prayer request
Jackson ... we are fighting with you sweet baby boy.
Tanner recently had a severe allergic reaction after a food trial from his food allergies. Pray for this family because I know first hand the stress and dissapointment they feel.
Sami and Kyle are both dealing with bumpy numbers for some times. Please pray they docs can figure this out.
Thursday, November 2, 2006 3:58 PM CST
I am packing, getting ready to leave to drive to Georgia to celebrate an angels 13th birthday.
We are going to have angel Haley's beach party at the childrens' hospital in Atlanta. Every child will get a toy. A nice toy. We will have games and snack and we will let them know we care. All in honor of a little girl who taught us through her couragous battle with disease that we are to HELP others, not turn our heads.
SO wish us luck, and maybe sign Haley's website. Angel Haley and wish an angel happy birthday.
I wrote this for Cheryl last year, they read it on her Birthday and sent up balloons.
For Haley:
Daddy's little girl, but Mommy's best friend
Only eleven, that is too young to have her life come to an end.
The day she got a fever they knew she was sick
But they flew her to Duke trying to make it better quick
Duke didn't know what to say or what to do
Leukemia maybe? There was NO WAY it was just the flu.
Time went by and the diagnosis came.
A disease they didn't know, but Autoimmune Hepatitis was the name.
After several treatments, centers, and lots of doctors notes
The found their way to Atlanta along with a glimmer of HOPE
Just pig tails and pink cheeks, Haley was only eight
But in the next few years, the lives she would impact would be great.
With this disease a new pain crept in
But her smile never faded, she just wouldn't give in
It started with a rash, just on the cheeks,
Supposed to be gone in days, yet it had been weeks.
Mommy said lightening had just struck them twice,
The new bolt was fierce and LUPUS wasn't nice.
Haley stayed strong and began to sing.
It started with a sassy song, such joy it would bring.
The Dirty Rotten liver blues, and then songs about yellow,
But it was a song for Sarah when we first saw Haley's HALO.
So tender and sweet, she sang through her pain;
So caring and precious, it was our gifts to gain.
They said she was so rare, she was one of a kind.
The world had never seen a child with this body or mind.
As she grew sicker, they begged God, "No MORE!!"
Perfect was she, though history said she was only one of four.
It isn't for US, we are reminded, that we live,
It is for the Glory of God that the time He does give
The time she spent here, thousands had been touched
But God looked down, and said, "OK THAT IS ENOUGH!"
Her gifts to us so many, even salvation to some.
Lessons of living, no matter what awful things would come.
She left us songs that gave God the Glory,
She gave us other gifts that told us her story.
One night in October, The fluttering WINGS
Came down to Earth, and made Haley an angel that sings.
She drew her last breath with us all here,
Then opened her eyes with her MAJESTY near.
Singing in a chorus of heavenly hosts,
Is where we all see her fitting in the most.
One day her loved ones will once again embrace
A new child, healed and whole, with no more pain.
Until that day, we promise to honor Haley
Carry on her torch, to carry one for her daily
She reminds us that when we pass, to donate our organs
An unselfish gift that can save thousands of children.
The most important thing to know of this child:
Is not of the illness, the pain, or the disease
It is of her love of children, and to follow her lead!
We miss you sweet songbird, we miss your sweet smile.
Maybe in Heaven you can sing for us a while.
Love, Lisa
Monday, October 30, 2006 6:09 AM CST
Magnet Ball
that is what they call it. There is a ball, and then there are children just glued to it, following it where ever it shall go. Out of bounds, in bounds, there side, our side... Magnet ball.
"I am a soccer player. I am a soccer boy. I can run so fast!"
This is the chant I hear coming from his room, playing with his trains. I think it might be the beginning of a new obsession. 
(Aiden at practice)
(getting his uniform- Aiden is #2)
We arrived to the game field ready to go, I don't know who was more excited, the parents, or the kids. The kids all arive and do some warm up kicking. 
This is where I take a million photos, assuming I had more film for the actual game, but of course... I don't. And let me add that my digital camera was dropped in my Mom's pool last weekend. (yes it was hot enough to actually swim here) so I had to go back to the usual point and click camera. I wish I got pictures of the actual game, but there will be more. 
Aiden has kids on his team ranging 4 years like him to 6 years. Some have played before and some have not. I wasn't sure how he would fare since he is one of the smallest, and so new to it. But... hello it is JOEY's child. He was like a little bulldog out there. I didn't think Aiden COULD focus like this. He was hilarious!
Aiden did make the first goal, and in Aiden like fashion. All the kids were kicking the ball towards the goal, and it wasn't going in. It was just next to it, so Aiden knew how to fix this problem, he just bent down, picked the ball up, walked over to the goal set it in front of it.. and kicked.
SCORE!
I don't know where he learned to do the victory dance he has, but fist shoving in the air, and a booty shake. "I did it!"
I am still glowing from the game. It was one of the best nights of my life. 
Baby Mason loved to watch the kids, crawl around batting a tiny soccor ball, and he really loved all the cheering and screaming. I am excited to think I get to do this again with him. I love being a mommy, I can't ever imagine my life with out children. There is nothing more wonderful than seeing someone you love with your whole self, be so happy. 
True joy
I hope you enjoy all the pictures. I will have some new ones up very soon. Have a happy and safe Halloween, and remember that "This is the day that the Lord has made" even if it is Halloween, God made this day, so celebrate in Him.
Much love,
Soccer mom
Friday, October 27, 2006 8:11 AM CDT
OK so I never do this. But This morning I had a real prayer answer. I mean almost like God was actually sending me emails. lol (and nobody better than through Joey's oldest friend Keith)
I was sitting here crying at my computer. Frusterated and just lost about a personal topic. I was praying at what I should do. I wrote an email adressing the situation, but wasn't sure how to express myself in the email (yes this actually happened)and then THIS pops in. This forwarded email. My answer to prayer.
I felt like I should post this here, I am thanking YOU GUYS for being the team that gets closer to home plate for my Aiden. I wish everyone could see the tears in my eyes when others accept my child for ALL he is. My sweet little boy that never asked to be sick. Never asked to have allergies that could kill him. He never asked to be born with a deadly disease, or take meds that are now damaging his other organs.
Two Choices
What would you do? You make the choice! Don't look for a punch line; There isn't one! Read it anyway. My question to all of you is: Would you have made the same choice?
At a fund-raising dinner for a school that serves learning disabled children, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question:
"When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"
The audience was stilled by the query.
The father continued. "I believe, that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and it comes, in the way other people treat that child."Then he told the following story:
Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked,"Do you think they'll let me play?" Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.
Shay's father approached one of the boys on the field and asked if Shay could play, not expecting much. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning."
Shay struggled over to the team's bench put on a team shirt with a broad smile and his Father had a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.
At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible 'cause Shay didn't even know how to hold the bat properly, much less connect with the ball.
However, as Shay stepped up to the plate, the pitcher, recognizing the other team putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least be able to make contact The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.
The game would now be over, but the pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.
Instead, the pitcher threw the ball right over the head of the first baseman, out of reach of all team mates. Everyone from the stands and both teams started yelling, "Shay, run to first! Run to first!" Never in his life had Shay ever ran that far but made it to first base. He scampered down the baseline, wide-eyed and startled.
Everyone yelled, "Run to second, run to second!"
Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to second base. By the time Shay rounded towards second base, the right fielder had the ball, the smallest guy on their team, who had a chance to be the hero for his team for the first time. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions and he too intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.
All were screaming, "Shay, Shay, Shay, all the Way Shay"
Shay reached third base, the opposing shortstop ran to help him and turned him in the direction of third base, and shouted, "Run to third! Shay, run to third" As Shay rounded third, the boys from both teams and those watching were on their feet were screaming, "Shay, run home! Shay ran to home, stepped on the plate, and was cheered as the hero who hit the "grand slam" and won the game for his team.
That day, said the father softly with tears now rolling down his face, the boys from both teams helped bring a piece of true love and humanity into this world.
Shay didn't make it to another summer and died that winter, having never forgotten being the hero and making his Father so happy and coming home and seeing his Mother tearfully embrace her little hero of the day!
Tuesday, October 24, 2006 8:02 AM CDT
We went garage sailing on Saturday and Aiden was allowed to bring $1.00 to spend. Little did I know I would suddenly have a little Donald Trump on my hands. It wasn't a matter of spending the dollar on the very first thing he could find (which is usually the case) He waited and waited for the right purchase.
We knew we found his sale when I saw a very adorable 5 year old holding a sign up that said "TOYS FOR SALE" he too was looking very serious about his job. Aiden hopped out of the car, holding the crisp dollar behind his back. He walked up to the 10 or so toys laying on a blanket and stared. I heard him humming and then saw him tapping his cheek with his finger.
The little salesman was going over each item with incrediable detail, including how much dirt the bulldozers could shovel, and exactly how many times he had lost it in the toy box. Aiden hummed and rocked on his heals considering the purchase of his new toy. The boy was a master salesman, waving his arms towards where ever Aiden's gaze would lay.
"I am liking the almbliyenace....How many dollars is it?" Aiden can't even say ambulance, but he held that dollar billl behind his back not letting the little used toys salesman know what he had to offer.
"How about one dollar?" He said looking hopeful....
Silence.
(oh can you drag this out any more?!)
"OK then I have one dollar for your almbliyenace" Aiden said, handing it over. I thanked the little boy, and his mother and I exchanged glances, both of us rolling our eyes at the drama of it all, and just thankful both boys were happy.
Aiden was very pleased with his purchace. The amblance lights up, makes real noises, has a voice calling a CODE... Oh yay.!! "REARRR REARRRRR CODE 3 RAERRRRR EARRRRRR" I am just LOVING the little TRAUMATIZER.. yeah.. I love stepping on that one in the middle of the night. I have actually found my self when locking up the house at night, intently looking for that thing and making sure it is up hihgh so there is no "REERRRR RERRRRRR CODE ! STAT" in my living room at 3:00Am..
Last night after bath time, Aiden and I played "saving Rusty" (yes one of his trains). I am assuming there are only a few children who put EMLA on their toys with tegaderm.. It has been intersting to watch this. Pretty hilarious actually. I find it most interesting that whenever the "doctor" (aka Toby the train) comes to help The ambulance quickly runs him over and "breaks his funnel and whistle"... hmmm running over the medical staff.. don't want to comment on that one. But I will say I believe in PLAY THERAPY.. LOL
Anyway, things have been good here although blood pressure is not under control yet. Still getting high readings, but I am checking way less often. Aiden is now taking 2.5mg twice a day of the norvasc, and if BP is high we add a mid day dose.
He has been sweating though, and way less red! I had to check in with his nephrologist and they strongly beleive the headaches were actually a symptom of his BP lowering. Aiden has been running in the 150/95 range on and off and they said, that the norvasc relaxes he vessles which will lower the pressure.. which makes the brain "not happy" as it was used to a totally different level of oxygen/ pressure. So basically it is temporary, and I have seen the headaches decrease a lot.
It seems that Thomas is the outfit for the year.. Big shocker.. although Joey will probably be SpongeBob. Mason is going to be a duck, and I am going to be a cat, and Rolex is going to be superman/dog. All a wide range of things from the Hawk House. Maybe next year we can organizes something but I fear that woudl mean we would all be trains. No thanks.
So Trick or Treating is an interesting thing for a kid who is allergic to every candy. It actually works out beautifull though. We do take him trick or treating, and allow him to gather all the poison err umm I mean peanuts, chocolate, and candy then at the end he hands it in for a surprise. This year it was going to be the Thomas spooky halloween tales DVD.. but he got that early in his last hospital admission. So I am waiting, because I have a tendancy to give gifts right away, to get him his goody bag.
Homeschooling theme for the week is: "Things that are orange"... Daddy brought home some tangerines from a citrus grove he was inspecting, and we are going to go to Busch Gardens on Wednesday and try to spot all the orange animals. Homeschooling has been fun, and really laid back. My favorite thing this week was what words he picked out to spell and write..
gross
weird
smelly
Ohh boys boys boys....Wednesday night is his first soccer practice, and Saturday morning is his very first game! Keep fingers and toes crossed that all goes well!
Thanks for checking in on us! I will update tomarrow with new karate pics!
Lots of Love,
Lisa
PRAYER REQUESTS:
Baby Dillon: Please Give him strength while he waits in very serious condition for a new liver
Baby Antonio: Please Lord Give him Strength while he waits for his new liver
Sweet Baby Jackson: Lord Give him strength as he recovers from his liver transplant, and is having complications
Oh My heart is heavy for these little baby boys. These sweet little angels on Earth. I hate Liver disease! I hate what it can do to a family, a body, a baby, a child. Please pray for these families.
Friday, October 20, 2006 8:14 AM CDT
Where do I begin? There has been so much to say these last weeks but I see myself not updating the site because it feels like the can of worms will explode all over this page… so here they are slimy and icky, worms on my page.
It was about 4 years ago when the thought originally crossed my mind. It is a useless thought, one I have heard other parents have and with no results. SO I never ‘go there’… but I can’t help but think it daily now..
I wish it was me and not him. I wish it was me and not him. I wish I could take all of this away and give him normal; 100ormal. I wish it was me and not him.
Ok so the wishing star is not sparkling over the Hawk house, so therefor I say it for nothing. But I can’t tell my heart to stop feeling it daily. Every mommy wants their children to have either equal a childhood to their own or better. I can’t even go there. I think of myself as a little girl…carefree running to friends houses next door, “can Julie come out and play?!” “Oh little Julie is having snack? Ok I will join her thank you!” I think of swim lessons with no scars, and tennis in the heat.. no blood pressure cuffs, or headaches. I don’t think I ever had blood drawn except the torturous finger pokes and ohh that one mono scare.. I am a fainter so blood draws were totally traumatic. Aiden had 43 blood draws out patient last year. I think of sleep over at friends… He can’t even have a babysitter. School. OF COURSE I went to school. The nurses room was just to get out of boring class assigmnents. Arts and crafts.. no label reading. No ingrediant checking. No mother standing on top of me with epi pens, with cellphone charged in case 911 was needed.
Yesterday Aiden went to karate. And let me just plug Superkicks right now.. The first place where there has not been an ounce of descrimination, or someone thinking Aiden=liablity. There has been only Aiden is a normal kid. Aiden has done it all to scare them, and it doesn’t even phase them. Thank you GOD for this. Thank you SUPERKICKS
But there was yesterday. No ones fault, we are new. I didn’t know it was picture day. I wouldn’t have gone if I knew. I wouldn’t have done that to Aiden or myself, and then of course his grandparents who showed up as well. From walking in the door, he wouldn’t move. I was dragging him through the door. I thought he was being silly or naughty. I never even saw the big photo area set up. But he did. The lights, the back ground the flashing camera. I am sure people are reading this and thinking, “so.. what is the point Lisa?” and maybe some fellow hospital moms already know why Aiden stopped dead in his tracks.
Aiden doesn’t ‘do’ professional pictures. He sees this stuff and thinks of pain, of CT scans, Xrays, and immediate fear. He panics. I have said it 100 times that you should see Aiden with an Xray… he flips. Panics. PANIC. Have you ever really been in a panic? A real panic? That is my Aiden. This isn’t him being a bratty kid. Aiden is NOT a bratty kid. Doesn’t have an ounce of temper tantrum in his soul. He was terrified. And of course stupid Mommy didn’t catch on until he said, “Mommy I am scared”… Well.. it went from bad to worse. With no weeping noise, he wept. He shivered. He grabbed his arms where the blood draws go. He asked "what are they going to DO TO ME" It is post traumatic. It is what sits on the inside of this smiling little angel. It is what wakes him at night, crying out.
And for those skeptics reading this, who have not met Aiden, who think there may be a little over exageration here… I would like you to email me directly. I have a few words for you. I would like to educate you.
What makes it ok for people to think that CHILDREN are uneffected? Just because the smile and laugh in the hospital? Just because the don’t know how to use the words to express their fears and there pain? BELIEVE me.. it is a BIG FAT LIE when you see the media portray these beautiful warriors like they are invinsible. THEY cry too. They are in pain. And yes they ARE amazing. Ask my friends who have children who are sick. Facing their own mortality. These children are filled with such a wisdom and special spirit. They draw rainbows and sing praise songs. But they still are scared. They still are human. IT IS NOT NORMAL to go through the stuff sick kids go through.
So there we were.. No one knows but my one friend who was there, that Aiden was terrified because he has a right to be. No one knows his sweet little soul his sweet loving spirit. Just a victim of his body. But the looks came from the other parents. My parents of course came to just watch class, little did they know they would be witnessing and enduring a pain they couldn’t fix either. My mom on her hands and knees on the mat.. cajoling Aiden to just sit near the other children. My dad begging him to BELIEVE him it was ok. It never worked. He wasn’t budging and he wasn’t taking his eyes off the strangers. We left and I sobbed. I guess you had to be there.
I wish it was me and not him.. I wish it was me and not him. I wish I could take this away and let him be normal; 100ormal. I wish it was me and not him.
I don’t want to hear people tell me… “Oh I had a child who was scared of cameras when they were little and they had no health problems.” Keep it to yourself. It doesn’t help. .
I turn my cheek at the million play groups we have to miss because only a few people think of him and his safety. Even though it wounds me that their cookies are more important than this child. I am exhausted at asking and begging others to call or email us when we are in the hospital. No you aren’t bothering us. Lets be truthful…It is just bothering YOU. I am trying to rally up for a new set of problems. The marathon continues.. yet I still feel blessed. I beg God to let the marathon continue for all my days if it means him staying with us.
He said to me this morning. “Mommy I don’t want to do karate on picture day. It makes my heart feel scared. It makes me have those memory things” This was his exact words. Oh I pray to God when he is a young man that his childhood isn’t ‘these memory things’.. I pray it is all the other stuff. All the stuff his Daddy and I do to try to make it better. The kisses and the hugs. But sometimes the primal fear of ‘those memory things’ take over those efforts we make, like fun karate. And I think to myself
I wish it was me and not him. I wish it was me and not him
Please pray for Rani, Fin’s and now Julia’s families. Three infants who have died this past two months waiting for livers. Pray for their families who will miss them everyday. Pray for Cheryl and Bruce. Do I need to say why? Because they wish it was THEM and not her.
Tuesday, October 17, 2006 6:57 AM CDT
Nephrology didn't go like I expected, it seems he has damage in his kidneys 'something something nephropathy' or "something something vasodialation" I was stunned and not really listening well. Basically we really have to get his BP under some control. Last weeks's 150/100 just isn't good. BP was very good in the office, on their machine, then mediocre on my manual cuff. But they said the manual is more accurate.
We will see cardiology in a few weeks to get and echo.
We have to report BPs every week to nephrology and we return in a month for follow up. I will bring a note book and husband to the next meeting. (not just any husband, my husband LOL not gonna just pick one off the streets)
Aiden had Karate yesterday and was awesome. I must say that seeing him swimming in that white outfit (note to self: don't call it a costume- teacher doesn't like that) was just too cute! He is so darn serious too. My favorite is when he practices the self defense. Oh yeah.. Aiden the tough guy is gonna really take someone down. hahaha.. If only I knew how to do vidoes on this page.
Keep Aiden in your prayers. XOXO
Lisa Joey Aiden and Mason
Friday, October 13, 2006 7:22 AM CDT
SO Aiden has restarted Karate! He had a lot of fun, although he wasn’t feeling quite himself. He has been off the past few days with headaches and then last night he seemed to have a little blood sugar issue. I am not really sure since I know close to nothing about it. (excluding what I have learned from the great educational portrayal of glucose problems in the Steel Magnolias)
So we are off to do labs this morning. Really curious about his prograf levels. Aiden’s blood pressure has been just not managed well. The past 3 days very high. 140/87 is often the readings we are getting. I am anticipating the neprhology appotinment on Monday at 2:45. Hopefully a lot of our questions will be answered. Mainly what happens with this blood pressure problems and in the event he may need epinephrine for an apahylaxis. That can’t be good. Would it make it go to levels that could be very dangerous. But I don’t know.. and it is one of the questions I have. (don’t get me wrong in the case of an anaphylaxis.. epi is our only hope. and I woudn't think twice, he would get it)
So the NEW karate is excellent, and with Aiden acting all sleepy, loopy and weird, they owner was giving the private instruction, he asked me, “is this how he normally is?” as Aiden lay against me eyes rolling in his head saying he is sleepy. I said “no never. He normally would be all over the place.” I was waiting for the man to tell me forget it, Aiden is too sick to be here. But to my joy (although it came only secondary once I got Aiden back to normal) he said, “If you are comfortable with all his medical issues being here… I am totally ok with it.”. I was relieved. He was very compassionate. Little does he know that Aiden’s medical issues actually almost NEVER reveal itself physcially and that will probably be the last time he sees him as a medical kid. It was pretty abnormal. It even prompted the owner to let me know they children would be ‘doing jumping jacks, and if Aiden could do one.’ LOL… I assured him, normally, Aiden could handle a jumping jack or two.
Anyway... to a lighter topic. Well not in the mind of my child though.
The halloween drama… Please pray for the cluttered mind of my struggling four year old.
Will it be THOMAS the Tank Engine?
Or
Sponge Bob?
Oh Heaven help us.. The torment!
And yes I told him he can be both.. after all we have both costumes… and I use the term costume very loosly especially since spongebob costume consists of one of the Miracle Mail boxes painted with some holes in it.
So put your wagers in… I am not sure what outfit will win, but the decision has yet to be made. I am rooting for sponge Bob.. but I think the classic Thomas is in the lead.
Much love,
Lisa
Monday, October 9, 2006 9:52 AM CDT
6-0… FLORIDA GATORS…. Oh Joey my love… I am very sorry about the defeat of your Georgia Bulldogs.. I can NOT wait till Oct 29th. I love you!
(for those who do not know…Oct 29th is when the Florida Gators traditionally STOMP the Georgia Bulldogs…aka: victory day for Mommy)
********
As of this morning… things are much better in the mucous/ coughing/ cold department. Aiden is feeling much better, still coughing some and getting about 1-2 breathing treatments a day depending on the cough. But basically is almost all better. Mason on the other hand has had it too. He has to do breathing treatments every 4 hours and then because he has re-occurring croup decided it would be better for him to be on pulmacort for several months just to help while he grows out of a “small trachea” or whatever his deal is. Basically, he will grow out of it, and just need to take a breathing tx once a day for several months. 
kisses make breathing treatments all ok
And of course, now the child LOVES his breathing treatments so much he will often carry his tube in his mouth while having an afternoon crawl. Is this type of behavior really genetic? Or do we just train them up nutty.
So, I was sitting on my couch Saturday morning holding a screaming and upset Mason with one hand and then holding the machine in the other.. singing loudly (after all, the nebulizer is LOUD)
“Row Row Row your boat!!” “ITSY BITSY MASON!” “ Whheeeee!! Look at Mommy’s NOSE!!”
Meanwhile, I keep hearing this low grumble coming from Rolex (the Jack Russell terror) and I finally look out my window to see what it was he making such a fuss about. Low and behold it was 2 people on the sidewalk staring at ME! Just standing there, not walking by, just staring! Lord knows what they were thinking, but they boldly stared in the window as if to say:
“We SEE you lady... You better not cross the line… I don’t know what you are doing to that child…but we SEE YOU”…
Oh for crying out loud! I am sure the yells and screams that were coming from the room Aiden was in could be interpreted like some form of torture, but it was simply Spiderman “flying” from His bed, screaming: “BOMBS AWAY!!” “WATCH OUT THOMAS! DEISEL 10 IS RIGHT BEHIND YOU! AHHHH!!”
I am sure the side walk it sounds more like “HELP ME! MY MOMMY IS INSANE!”
Anyway, so here I am doing all I can to help my little baby stop coughing, and I am getting “looks”. It doesn’t exactly help the Mommy Guilt-o-meter. The funniest part, was I just smiled a crazy wild eyed smile, because after two kids and three breathing treatments ALL IN MY LAP, I am certain I have over dosed on inhaled steroids.
At any rate, Aiden’s blood pressure is on and off still too high! I am in shock at why it isn’t normal all the time yet on such a high dose. Or maybe it isn’t a high dose? I don’t even know! I guess this question is for the nephrologist, which we will see next week. Prayers please for that.
Aiden has been doing school at home (brilliantly named: homeschool) and admittedly if he was at a more “important” education age I would probably be considered somewhat neglectful, but at this point a few days a week of serious studying is fine. (and when I say serious.. this means actually TURNING the spongebob off the TV)
But the home-schooling has been fun, and I love it. I really do! OK I will admit a tad bit of jealousy when I hear about fun days at preschool, and field trips, and parents becoming friends at their kid’s school, but it all evens out in the end. I am thrilled with his progress. In fact we had a moment of ALMOST genius the other afternoon.
“If you read a word on that page, you get a prize! Any word, just figure one out”… As I am folding a load of laundry in the kitchen, I can hear things like
“BBBBBB-KKA KA KAKKkk_ BBUuuu the the the the ”
All the sudden, Aiden excitedly runs in exclaiming, “Mommy! I read the WHOLE thing! It says, “Bertie is a bus!” I look down and it DOES! Ok so before I jump with joy and proclaim that he now can read.. I ask him, to show me how he sounded it out.
“Mommy I just looked at the big picture of Bertie and I KNOW he is a BUS!” And there it was, Bertie smiling back at me; a large picture of the big red bus did seem to give it away. Well that and we have been working on this book for a week.
So, no I am not winning teacher of the year.. not yet anyway. But as long as he loves to do school with this passion, I think we are doing well. Today is Columbus Day and we are planning our own field trip… to the back yard. We are going to play “discovering the club house”… Just work with me folks, He is only 4.
In other news, Aiden’s first soccer practice begins next week! Fortunately it is in the evenings and games will be early in the morning. And hopefully we will have the blood pressure/ kidney stuff a little better controlled. Although two of Aiden’s doctors are not for him playing, but thankfully Dr. Cross, said “Oh for Glory’s sake! Just let him TRY!! If we can’t keep his blood pressure under control then quit… but let him TRY!” I have yet spoken to any other parent on Aiden’s team although an email went out about snack.. I of course could feel my heart pound in my chest with visions of peanut butter and pudding coming to practice. I will admit I am pretty nervous about telling them about Aiden and his ‘stuff’. Some people really don’t handle it well.
(Note: there WAS a 2 paragraph long rant I just deleted/ edited. I am feeling generous today and decided to spare you all. Haha)
So Joey and I are feeling better. (Emotionally speaking) We had a nice afternoon pulling the 12-foot weeds in the back yard and placing mulch where the dirt had become Aiden’s sandbox. Just in time for a summer evening fire. (Yes folks it is STILL summer-ish here. with highs of 85 it just does not move me to say “fall”) It was a nice night, and it reminded me so much of last year when things seemed less stressful. Maybe that is just how memories work, focus on the good.. and forget it was stressful back then too. Once the boys are feeling better we will go to the pumpkin patch and spend all of our hard-earned cash finding the right pumpkins to portray everyone in the family. (Including the cat and dog).
BIG things are happening here, that I can only ask you to pray for. We just am not ready to announce, but in due time we will. Just know we need prayers and guidance, so we know God’s will is being done.
God Bless, and please pray for:
Gilbert (who is having problems with his liver and his bile ducts, and is itching horribly and in and out of the hospital)
Baby Jackson and his mommy who are recovering from a liver transplant with her as his donor
Natalie… PRAISE: the little bear is going on her wish trip, and pray she gets to feel all the wonder and happiness all that Disney can give this deserving little girl.
Isaac, who is still away from home and still going through so much!
Roger.. I just love this little boy! I can totally imagine him and a few others from our liver support group meeting and being best buds. Since he received his liver (2nd one) he has been through so much. They may now be facing a new transplant at some point as well.
And as always my dear friends The Vincents XOXO
I will leave you with an Aiden funny:
We were laying in bed saying our prayers and this is how it went:
Me: “Dear God Thank you for Daddy, Mommy, Mason, Rolex, Rufus, and Nemo. Thank you for the my toys, and my family, and thank you most of all for being our loving God!”
Aiden: “uhhh Mommy aren’t you forgetting something?” he asks with his hands still in front of his eyes praying.
Me: “I am not sure, who am I forgetting?” Typically it is some train or a little playmate.
Aiden: “MRS. God! What about MRS. God? Isnt’ she getting all the food for all the tiny baby God’s?”
ME: I was thankful his eyes were still shut because I found this hilarious.
“There is no Mrs. God, but if there was, I am sure she would be getting all the food for the babies.”
Aiden: “NO MRS?! (pausing and thinking) Oh Ok….. Amen.”
Much love,
The Hawk family
Tuesday, October 3, 2006 7:59 PM CDT
So Aiden is much much better, we got a chest X ray on Sunday in the ER (along with 2 pokes and an IV) and it only showed "streaking" SO.. I suspect that means no more pnuemonia. Although Pnuemonia really is just a scary term for a wide range of fluid in the lungs. It can be really terrible, or not so bad. I am thankful we fell in the "not so bad" catagory!
All is normalizing here. well except the
Blood pressure. Egads! Is this for real. Like some Blood pressure button got pushed and suddenly we are dealing with this all the time?! 140/86....138/84... calm child.. quiet child.. (well not quiet in the litteral meaning.. quiet as in not moving a lot.. he IS my child after all and we aren't quiet often) Best readings we are getting have been 118/78 and that was on Sunday. So nephrology called again and upped his norvasc to 2mgs BID oops that was fancy med talk for twice a day. See all the amazing benfits I get from being Aiden's mom? I can talk fancy med talk. BID... I am cool, I know it! They want his BP to be 100/60 - 109/68 SOLID. Stay THERE.. this is just TOO high. So weird we just never dealt with this before.
Seems like we need to go BACK to the pediatrician tommarrow.. now they little Hawk, Mason, is coughing. we really DO feel the prayers. There are just moments when a warm feeling gushes over me and I feel loved. I can't explain it, other than it must be prayer. So thank you if you are thinking of us. We really thank you.
Keep Gibert, Kyle, Angel Haley, Jon, Natalie, Antonio, JD, Annika, Jamie, and ALL of these precious little liver kids in your prayers! Things are haywire everywhere.
I will leave you with Aiden's newest stand up comedy routine:
Aiden: "Mommy, what is a tree's favorite fruit to eat?"
Mommy: "I don't know. What?"
Aiden: "PINE- APPLE!! get it?? get it?? HAHAHAHA I am SOOO HILARIOUS! I am a JOKER!! HAHAHAHA"
Who needs an audiance when you have THAT self esteem??
XOXO
Lisa
Saturday, September 30, 2006 1:54 PM CDT
Just saying the lyrics to the song playing.
"Sometimes He doesn't give you what you had in mind.
Sometimes you don't like what you find.
But He has something in store for you, just trust Him and He knows what to do..."
Thank you Haley... you were so wise, and just a child.
Aiden has Pneumonia.
the latest of our dramas. And weirdly enough the least of my concerns right now. (well that is a stretch) Aiden has pneumonia in his right lung. He is getting Antibiotics, breathing treatments, and pulse ox readings. Right now he is hanging in there just fine. The really bad thing is this: the albuteral is making his blood pressure very high. We were going to try the Xopenex but we are afraid of it climbing even more! The nephrologist called me last night and upped his Norvasc because it is so high. I am concerned! I just am not knowledgeable about BP so that makes me nervous in itself.
HOWEVER I have seen some small miracles come out of this situation, if it wasn't for Aiden getting admitted for the heat exhaustion/ bigh RBC etc... then we would have never known about the high BP... if we didnt' ever know about the high BP then this weekend his BP would have been so dangerously high with out his meds, and on the breathing treatments. So I am just SOOO thankful to God that he allowed this to be revealed together.
Aiden has the cutest blood pressure cuff, it has embroidered teddy bears, and even the pumpy thingy is a teddy bear, but the inside is a pink satin. Not that he doesn't love pink, but I thought I would see if anyone knew of any Thomas Blood pressure cuffs they could sign my guestbook and let me know. Maybe SPongebob? Who knows. Pink satin teddy bears.. it is cute, but this is a new way of life for us, so I wanna find the best cutest.
I really didn't want to even update about Aiden, but the pnuemonia sort of blind sided us too. I just wanted to link you all to Haley's site . Please keep them in your prayers this weekend, but also EVERY weekend. When you loose a child, that doesn't go away no matter what anniversary you have pass you. They feel the depths of sadness everyday not just Oct 1st. Although it is a helpful reminder that bad hair days, bad traffic, and even pnuemonia is just not that big of a deal. So, we are off to play trains.
To angel Haley,
We miss you, but are just so thankful that you gave us SOO much! I love love to listen to the CD with Aiden, and love that I was taught how to put it on my site. God knew that you would be here on Earth long enough to write an anthem to Aiden's and SO many other children's lives. I won't forget you and love doing the foundation work with your Mommy. Thank you for watching out for Aiden. We will see you in Heaven one day, and I want to hear you sing with your angel's voice a new song of healing and grace.
Love, Lisa
In memory of Haley amd other children who have lost their couragous battle, if you would like to make a donation to the Haley Vincent Foundation or *would like to be reffered for a package* please visit:
www.thehaleyvincentfoundation.com
or just email me or cheryl! We are here to do these packages and want to send them to the kids. don't be shy, just let me know if they would like one! Especially if they are having some sad times.
I will update soon, to let you know more about us. Please pray for Aiden. I am a tad scared for him right now. Joey and I are just accepting some of the things we have been told, and it is taking a toll. Thanks for everything.
XOXOXOX
The Hawk Family
Thursday, September 28, 2006 8:24 AM CDT
Aiden is really doing good. He seems to have caught a cough/cold, so please pray for him. No more admittances!
Aiden is fatigued from his meds.. AIDEN FATIGUED?? Is THAT for real?? When I first noticed his head haning low, walking slow with big breaths, I was freaked. He was at our Dr.'s office and they looked in the PDR and said it was probably the medication. It causes fatigue. I was relieved because that is NOT normal for Aiden. But through the day he had MANY non fatigued moments, and remember folks Aiden's version of fatigued is normal kid's hyper.
So the labs aren't back, they were send outs. Hematology wanted to do the CT scan on his chest and abdomen, and we will do that all out patient. They just want to make sure since we have some hematology issues. He also is getting a dexascan for his bone loss (yes you all heard this one before, but this time nephrology really wants it.) And other than that we await on baited breath the results of that Erythopoietin (or EPO) test. Praying it is normal so we don't have some real big issues here. If that is normal (doing the EPO happy dance) the thing is they really think the meds are the reason. Infact the nephrologist walked in and said,
"there could be three reasons this is happeneing to Aiden. Medication, medication, medication....I think it is medication"
I liked him a lot. So since we can't become UN-liver transplant recipiants and frankly don't want to, we will adjust and figure this out! we have NO choice. We can only take care of what we have been handed.
Aiden's functions are normal (creat normal) and BUN is not normal but it runs very low, which is what happens with this kind of problem with your hydration, cooling, etc.. whatever that is wrong with him. The creat has bumped tripple too high several times which is an indicator that his kidneys are less resiliant. But as for now we have normal function. (high end) It sounds like the liver kind of.. normal function, but some scarring.
SO that is all good. I guess.. even though when I type it I want to vomit. I mean heart beating fast, real vomit. Probably not what you wanted to read here. But it is the full real story of our life. Mostly wonderful, moments of terrible and all the other stuff just is what we have to deal with.
I am thankful for the people who offered to bring dinner. Joey and I have been really blessed by this. Normally we don't accept help well, but I think our "stress-cup" runeth over and we need help sometimes. Joey has to work extra hours to catch up on missed work, and we didn't even see him till past 7:00 last night (he leaves at 6:00AM for work) I know we will both crash this weekend.
The excitement of this whole mystery being over is coming down, and we are just sad now. But that too shall pass, because the wall shaking laughs coming from Aiden's room remind us that hey.. if HE can do this stuff, we sure can too. We are just thankful that he has the stuff he has, and got his liver in the first place. We knew it wouldn't be a perfectly normal life, and it isn't like all the moping around will change anything.
I am in the midst of a great Beth Moore study and I think I am about to order online Breaking Free again. My mom and I are going to do it together. I think this will help me let go of the things we dont have control over.
Anyway, prayers for the EPO (everytime I say that I think of EPM which is a horse thing- and it makes me laugh-COTH)
Pray for Haley's family too. XOXOXOX
The song on my computer now is Everywhere. I just needed to hear that today as well. Haley wrote and sang all these songs. This one I firmly believe was a gift to her Mommy and Daddy (written shortly before she passed away)
Love to you all,
keep praying!
Lisa
Monday, September 25, 2006 10:40 PM CDT
HOME!! HOME HOME HOME HOME HOME!!!!
Wednesday
I have zero energy to update, so here is the short version. They did and ultrasound on his kidneys and renal vein, and they are waiting for some more tests to come back to see if there is damage or more problems or all meds.
For the first time I looked at him this morning with his red face and veiny arms, and thought... "that is normal for his condition" and not been in a panic that they haven't figured him out.
I am in shock we are going down the kidney road already at 4, but my wise friend reminded me that with kids like Aiden you don't worry about 5 years down the road you can only think about today. And today we are ok. He is heading in for his own blodd pressure cuff right now, re check his readings. they may want to up his meds again (norvasc). Pray they Eurthopoietin comes back normal, if it is high then... well heck I dunno
Also pray for my wonderful friends the Vincents, they are coming on the saddest anniversary this weekend. Haley who is forever 11 years old has been gone for almost 1 year. not one day and rarely one hour has gone by with out me thinking of her.
I will promise to update with all the information and soon. But for now, I am just too tired to type. God bless and thank you for loving Aiden and our family. I can't tell you how much your support and emails have ment. XOXOXOX
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Monday update
We saw nephrology and hematology today. NO ONE blew Aiden off. They both claimed him as their patient. This was like a miracle in itself. I sigh, thinking about how many people have scratched their heads and said, "I HAVE NO CLUE"... but I guess we just didn't really have enough clues. He has some obvious problems with his kidneys.
They think his RBC is high (erythrocytosis) for the same reason he has just been diagnosed with hypertension. High blood pressure. His kidneys. Ugh. This happens often with kids on the medications Aiden is on. It is a complication to transplant. ONe that seems to have blind sided us.
Secondly, hematology feels that Aiden is producing too much Erythropoietin This is a hormone sent out by bone marrow and the kidneys that makes RBC or something like that. They want to see if he has some kindey disease occuring, or if there is something more serious. (however rarer and we won't even get into that here.) So anyway.. tomarrow we will do the Erythropoietin test, and also most likely do a CT scan on his chest and abdomen to rule out some other stuff.... if Dr. Cross feels the timing is right.
SO a lot is being done. We add a new medication, which sucks but hey at least we know he isn't allergic to it. (Phew!) and he has high blood pressure at age 4. Stinks again. But can you imagine if we get this all figured out? All the red veiny itchy? All the problems treated?....I can. I imagine it every day in my prayers.
I won't deny that I am not frightened and very tired. But we don't get a choice. This is how it goes. I am Aiden's mommy and this is the job requirement. I know that other liver moms, or other caringbridge moms understand that:
Just because we do this often doesn't mean we ever get used to this. I know people who hesititate to call or email or visit think, 'hey this is just how it is for them. They are used to it. They are strong', but I just have to tell you that we never get used to it, and if feeling sad means we are weak then we are weak. We just do what we have to do.
I just thank God for his timing. I have faith that we will know more soon. That we will complete this journey only to begin a new one with a healthy Aiden again. Please pray for us and this to be God's will.
Thank you to those who have been praying.
With love,
Lisa
Friday, September 22, 2006 3:49 PM CDT
Saturday night update:
Aiden had a wonderful visitor tonight. I have to be honest, we never really get visitors. I mean most of the people who follow our family don't live here. Usually the hospital gets pretty lonely and we just hope to leave soon. But tonight was different. Our good friends came to cheer Aiden up, and help spread some icing with Mason. Seeing Spencer for Aiden was JUSt the medicine he needed.
Aiden's nurse (I must add the nurses are SOO amazing at All children's I just forget how amazing they are) unhooked Aiden from his IV and let us go to the cafeteria. Aiden is as usual in isolation when he is in the hospital. SO to get a pass to go down stairs was exciting! Aiden and Spencer led the way both wearing masks to the basement where we were going to eat dinner and make Masons cookies.
The boys just ate their snack but you could tell all the wanted to do was PLAY! SO off they went. After singing a beautiful chorus of Happy Birthday to Mason, they ran around the empty area and played like they were at the park. 
WHo cares about the IV in the arm? And the fact it was in a hospital cafeteria snuggled way in the back? Aiden sure didn't. It was just an oppertunity to be a kid. carefree and normal. I had to stop watching at a few points because I could feel the tears coming and I know they would never stop. But reality would snap me back as I could hear the usual "AIDEN! GET BACK HERE!" when the boys got a little loud, or too far away.
I could see the: "LOOK AT THOSE TWO KIDS 'HAVING FUN' IN THE CHILDREN'S HOSPITAL" kind of looks getting thrown our way.. you know what they really are thinking is, someone get a hold on those kids.. this is a place to be SAD! No thanks, we don't buy that philosophy.
So the "party" was great! Here is my one year old looking so cute!
Mason loved his "cake" basically icing on a plate. But I think the entertainment of the boys was the best part of the night for him. 
I just want to thank Spencer for coming tonight, and for Sophie visiting yesterday (boy I sure wish I had pictures of them playing hide and go seek in Aiden's hospital room. That darn IV pole just gave Aiden away everytime! ha!)
It means so much to see Aiden smile and laugh from his whole body. There is no medicine like happiness. I know that for sure. And even with all of this crazy life and crazy stuff we have been handed I know how blessed we are. How much we have. I am just thankful for the four year olds in my life that remind me when I need it, that happiness is simple if you just let it come.
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Saturday afternoon update:
Hi all, Aiden still has an infection going on. His WBC is lower but still way too high. He is feeling better and is playful and usual. We are noting that he has been having very high blood pressure readings since admission yesterday, and I pray and wonder if God is revealing what we have been begging him to reveal. It seems like nephrology will be consulted this weekend.
Aiden's RBC's and his hemoglobin, hematocrit etc are just way too high. Not budging with ALL the fluid on board and just going up! I am about to stick a needle in his bone marrow myself if I knew how to do the biopsy. (uhh for those who are overzealous at judging my crazy moments... that was a joke ... sort of)
I just want to thank you for the comments in the guestbook. You have lifted our spirits. Even all the way from Canada. XOXO Like karen said, "Maybe we will figure out what Aiden's body has been shouting for us to learn" I hope you are right my friend.
And because it is the day that I can not deny no matter how I know HE doesn't know the difference. I DO... I know today is Mason's birthday, and so here is to you:
My dear Mason,
Mommy loves you so much. Today you are one. Today I live a milestone with you that I have yearned for even before you were born. I held my breath for a few months when I got to know how sweet your soul was. I thought, oh this can't be. I can't be THIS lucky! But I was. You are the most easy going, precious and full of light and love child I have ever known. Your sweet soul shines from you and I just adore you. God chose you for this family, and as He would have it, we are celebrating your beautiful life in an unconventional way. But it seems the only way God will have us know. I cherish you and the joy you have brought me over this year. You have been my suprise and my wonder. I have experienced everything new with you, and you allowed me to cherish your brother even more.
Happy Birthday my sweet blue eyed boy. I love you to the moon and back.
Mommy
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Fridays' update below:
"Mommy how do you spell SAD?"
this is what he asked me an hour ago.
Aiden is in the hospital in St. pete (all children's hospital) He woke up ready to take on the world, but then proceeded to projectile vommit, diahrea, and then faint several times. His liver labs are as usual normal, but he is showing infection somewhere his WBC is 19 and he normally runs 4. He also has very very high hemoglobin about 4-5 points above normal range and all his RBC are HIGH. (hmm sound like a broken record??) He is red .... lets all say it together.. VEINY and ITCHY.... this just sucks.
Tomarrow is my precious pride sweet baby Mason's first Birthday and it looks like Liver disease yet again stikes a Hawk Birthday down. Of course the baby could care less, but I am having a pity party.
I better go before my buckets of tears come, better not start now or I may never stop.
Pray for my Big boy. The best big brother in the world. We had big plans again for the weekend, and he is SOO sad things went bad again because he got sick.
Lisa
Ps/ Happy birthday my sweet Mason. My sweet love
Wednesday, September 20, 2006 7:36 AM CDT
OK so I promised I wouldn’t bore you with the million photos but I am sitting here sifting through these pictures and just thinking.. Ohhhh I love that shot.. and AHHHH I love that shot. SO be warned maybe I will have to make this second part of my update another two part-er. And so on…
After many hours in the car, Joey and I could only take so much more of the continuous Sponge Bob playing in the background. At one point we were like the Hawk version of the National Lampoons vacation. Singing in chorus (ALL of us) songs from our Veggie Tales CD. Songs like “Are we there yet?” and “Dina won’t you blow your horn?” perfect for a road trip. It was my job to make note of all the “just married” signs on the cars. I waved at them all as we passed, and honked our horn. I am sure the blushing brides had second thoughts of their blissful marriage, as they saw our white minivan approaching, us smiling with beef jerky in our teeth, and Sponge Bob blaring from our car, honking and waving at them because we too honeymooned in the mountains.
Road trips are fun, but sometimes the hours in the car can be just boring. Especially with the invention of DVD’s that keep the usual kid fighting to a minimum. Even in our boredom though, God would give us a good laugh every once in a while, like this truck that kept tailing us. 
(Have I mentioned conspiracy theory yet? Who else has peanut trucks follow them on road trips?) 
Once we finally saw mountains we got off at the rest stop. We were in Asheville, and the weather was cool and damp. Ahhhhhhh kind of like a cold drink on a hot beach. As Joey entertained the passer-by-ers with Mason’s circus tricks (yes he does this in public!) Aiden and I explored the rest stop like two dorks. I must have 100 photos of this furry caterpillar that was on a rock. Joey kept muttering something about me capturing the “wildlife” on film. I just ingnored him and took my photos. If I only would have known how much more fun was coming, maybe the Rest Stop wouldn’t even be on this update, but here it is. One of the few family shots from the trip. At a bathroom, on the side of the road. Classic. 
Finally we are soo close to the cabin and Pigeon Forge that I could taste it… but like a LEMUR diving off a cliff, Joey could not turn the correct way off the exit. Some brilliant businessman decided to plant the largest Bass Pros Shop store right there… on our last leg. And so it was.. the second grouping of photos are at Bass pro shop. A store. A big big rednecky kind of store. You know with a million fishing poles, boats, and dead animals frozen in time with scary looks on their faces. Wow.. now THIS is what I call vacation.
(this is what Joey said I look like before coffee)
So finally we make it to the cabin. Aiden promptly dumps all his trains out on the carpet and makes a perfect track to play in. Gotta test out the train playing environment before you know for sure if you like the place or not. That is the night we braved the Super Wal-Mart (not my favorite place in the world) and got the groceries. I kept wondering when it was going to feel like vacation, but then we found out. As the sun was setting on the mountains, Joey and I sat with our boys on the wrap around porch watching the trees glow reds and oranges from the sun, and we knew we were in OUR paradise.
The boys on the wrap around porch. This picture has become and heirloom, I just love these boys!
So in my last (an inadequate update) I told you about our road trip to the tiny train town of Dillsborough. Yet on the way there we had many adventures. The landscape was amazing, with creeks, and rivers, to water falls and forests. At one point Joey quickly pulled the car over at one of the 100 look out spots, and we decided to adventure up a beautiful rocky waterfall. We were all in the mood for a hike up a mountain, and we just couldn’t have picked a prettier spot. 
Here are some more pictures of Dillsborough. Aiden couldn’t get over the train and how it was a real engine. All the coaches had names on the sides and we had so much fun reading their names and saying hello as the train steamed past us out of town. 
The consolation prize, as I previously mentioned for NOT riding the amazing train, was the largest Thomas collection I have ever seen. 
It was well worth hanging out in the train store. Three train tables and all the trains he has always wanted to play with. Needless to say he was in Heaven. I just lavished and loved watching his wonder, but seriously… It was like a mini version of Daddy at the Bass Pros Shop. Enough already, it’s vacation people…
Did I mention that 5 ½ years ago Joey and I honeymooned in this very place. We both thought that was just the neatest part, redoing some of the things we did on our honeymoon, but this time as a family of 4. One part that I remember loving so much when I was just a innocent young bride
(hey any moment to show a wedding pic is a good moment! :P)
was going to Cade’s Cove. So I was adamant we go there with the boys, explore the wilderness and hike till our hearts content. Amazing how motherhood crashes that reality. The Cade’s cove experience was more like: going to the visitors station, buying silly masks from the gift shop, driving ¼ of a mile into the 28 mile drive and turning around. It was a good enough version of the wilderness for this family. Thank God for gift shops!
Yes this does mean a perfect stranger took our family photo with me in a bear mask. If they only knew. Heck..if YOU only knew! HA!
We did stop by a stream just so Joey could give stone skipping lessons to Aiden and Mason:
I had to climb down this SLIPPERY little rock/tree root path, I almost had face meet dirt a few times
So the day was blissful, and the evening ended in dinner on the porch and watching the red ball sun setting again into the mountains. We listened to the crickets and the birds, and stayed out to watch the fireflies. Fireflies are a natural wonder that we just don’t see in St. Pete.
Drum roll… Yes I have finally moved on to Dollywood We woke up bright and chipper… I think this is the morning Joey woke me up BEFORE the sun rose, to drag me on to the porch with blankets in tow to watch the sunrise. See photo posted of me at Bass Pro Shops (the bear) and you will note that I am not an early riser. It was romantic and all… but give me my coffee. After wrestling the boys and packing a days worth of food for Aiden. The park’s rules state: if you have a medical need for food then you can bring it. I was prepared to have to explain WHY Aiden had to have everything packed and why he couldn’t eat any food elsewhere, but we pleasantly found out once we arrived, it was not even question.
Dollywood. Yes the name in itself is just the cheesiest thing. I mean HOW much fun can you have at DOLLYwood? Uhhhh don’t let this name confuse you, it was amazing. The best best part of the whole trip. (didn’t I say that 4 times already?) OK so besides the fact that it is nestled on God’s beautiful wonders the Smokey Mountains. It is landscaped with beautiful flowers with covered bridges and little creeks. Everyone there is dressed in some period outfit and it feels so charming. There was basically no one there because school was JUST in session, and it seems we came at a very quiet week. Everyone has those precious southern accents (not like the Georgia drawl, this is mountain twang... totally different), and the food! If we could eat it… I bet it was good.
So with nothing further to say here SOME of our Dollywood pics:
trains trains everywhere!!
here we were on the train, This was the conductor and Aiden was about to explode. Mason was bored out of his mind. 
Ahhhh that is better! They had this AMAAZING baby area. I think Mason didnt' stop smiling once!
Dolly wood has these amazing tree houses here is the bigger boys playing in those. The kid's areas were just wonderful!
Well that is it for now. Thank you so much for checking in with our family. We are much recovered from the trauma of the anaphylaxis, after all what can we do about it now?? Notta.
This weekend, we will celebrate the birth of Mason (that is right he will be ONE year old!). And what a delightful and wonderful one year he has brought us. Mason is the easiest sweetest soul, and I love to watch him grow up to his little self.
Take care and hug those loved ones!
More pics coming soon!!!! (still have to cover about 6 more rolls! hahahaha)
Love, Lisa
Wednesday, September 13, 2006 6:44 AM CDT
** congratulations to Uncle Alan and Heather. I just want you to know how excited I am to have Heather as my soon to be sister n law. I feel almost as blessed as lucky Alan is. So congrats on the engagement guys and we love you!
OK ok... moving on to the good stuff. So this will be a part one of two for the vacation, and seriously the only reason for that is because my camera is not uploading to my computer and I am using pics from the real camera scanned. SO there are only 349 more photos to show you... uhhh just kidding I will reserve that kind of torture for my local victims.
So on day one we had to drop Rolex off at Nana and Babu's house. 
(above: Aiden in front of Nana and Babu's house riding his bike before the long car ride)
(Mason on his wagon ride)
Rolex loves staying at his grandparents they spoil him so much. I catch them mircrowaving his breakfasts, lets face it, we just can't compare.. so Rolex was on vacation too.
We also then visited our good friends with their wonderful, adorable, and tiny and cute and adorable new baby. (uhhh those were the hormones talking) SO precious. It was incrediable to see them, and just relax and hang out with old friends.
The car rides were amazing. Both boys are great travelers. There was the intermitent "the cabin must be REALLY far!" but other than that we knew there was an adventure around every bend.
Our cabin was better than our house. 
(the cabin!)
(Joey on the top floor and Mason on the bottom)
I mean we just got lucky. I can't get over how in the moutains you can stay in a cain verses a hotel for the same price. It was perfect. The first day after arriveing we had to find a bank. We just figured this would take us down the road, but the closes wachovia was 1 1/2 away... road trip! So we got in the van, and road through the most beautiful landscape I have ever seen. The Great Smokey Mountians National Park. It was breath taking!! There were screams, and oohhs and ahhs... and that was just from MY seat.. Aiden kept saying, "we are in the real clouds!" And we were! We traveled on to this small adorable little moutain version of mayberry and found that the next town over was Dillsborough. AKA train world. It was amazing and of course Aiden's favorite part was the enormous Thomas the Tank engine superstore at the actual station. Why did we even come this far? take him to a thomas store... and that is all that matters.
We walked the tiny little town and the weather was a ridiculous low 70's and we were just in Heaven. There was an adorable Christian book store on the rail road tracks, called "railway to Heaven" and I of course was loving that. I bought a little book called, "Home sweet Homeschooling" and I LOVE IT! It was so encouraging! It makes me want to homeschool both my boys forever.
So after leaving train Heaven, we track back over the moutains to Pigeon Forge and to the cabin. It gave a whole new meaning to "day trip". It wasn't like anyone was saying, "seen one mountain you've seen them all" it was just breathtaking.
Our cabin was semi secluded but just a minute from a super Walmart. Which was like best of both worlds. Seriously, with a kid as food allergic as Aiden NO eating out is possible. So we got groceries and the first night we made Chicken Fajita's. It was SO yummy! Aiden played the free arcade game in HIS room (how could my 4 year old become this KID so fast?? "mommy I wanna go back to the cabin so I can play video games!"... Lady pacman was discovered and he loved it).
Basically the first days of the vaction were amazing, but actually tied for how fun they were for the next. I am off to the drug store this morning to figureout how to import my pictures from my camera. I will be back with Part 2 soon.
In medical news, Aiden is pretty stuffy and congested this morning. Red faced and sleepy. I think the 30 mgs (was 60mgs) of prednisone he is taking is so hard on him. His little cheeks are swelling, and he just looks miserable. So keep him in your prayers. I am sure by the time I finish typing this he will be jumping on the couch and wanting to play outside.
Much love to you all, and thank you for all you said in the guestbook. I can't tell you how much we appreciate your prayers. Things have been tough for the last 4 years on and off, but we can rally back and get back to our 'loving life, and feeling blessed attitude'. Sometimes though, it does not come naturally. As my good friend Cheryl says, Faith is something you have to work on. It isn't just granted to you like a magic wish... sometimes just having faith is the ultimate goal, not the thing you are praying to have faith in.
We love you,
and check in soon for 349 more photos.. :P
(suddenly the web counter turns to zero)
Monday, September 11, 2006 8:47 PM CDT
We are back! 10 days gone, no matter how you put it is a long time. The trip was pretty amazing all EXCEPT transplant camp. Since this is Aiden’s medical journal (not just my ramblings…) I will tell you the not good news first. Camp was ruined. To say it was a disaster wouldn’t be me being dramatic or over exagerating. It would be really the understatement to describe the horrible time we had.. or “DIDN’T have”.
Only a half a day in on Saturday at camp, due to a ‘miscommunication’, the nurse assigned to follow Aiden like a hawk gave Aiden a tootsie pop. You know, the kind with MILK. Yes that would imply that we for the first time ever allowed him to go to his age group activities with out us. The camp director made a huge announcement that there will be no peanut butter on site. That there was a severely allergic child there. (of course this was a journal entry in it’s own all about how the “severely allergic child’s mom got teary eyed) They thought they covered all bases, all except the one rule: “don’t feed him”. The blame isn’t really important, and I know how terrible they feel.
Joey and I were sitting in a rather interesting lecture about “getting your child back into school” it was neat to learn about the programs they have installed for kids who have been transplanted, to make sure they have their rights met. Joey and I sat there for a little bit, but we whispered back and forth how we couldn’t never trust Aiden in school because he could be fed something and die. Aiden is going to be homeschooled, and I am thrilled and excited about it. We decided to leave early and find Aiden. I had a tug on my heart. I just wanted to see Aiden.
I walk up to the play ground and admire my little boy playing for his very first time in his life with a group of kids, and no family standing around. (yes you read this right… First time… ever… last time ever.. last time until he is better) He is swinging on the swing, head thrown back looking at the sky. He looks tired. He notices me, and comes running. Arms out stretched. But I knew something was wrong. (thank you God). He seems a little drunk. Slow. And I see this tiny piece of brown crusted candy on his cheek.
“What is that!?” I am in shock. My worst fears? Someone fed him something he was allergic to??
“Oh don’t worry I called to find out, and they said it was ok for him to have this. It wasn’t FOOD it was a lolly pop.” The nurse says.
“NOOOOO!! He can’t have lolly pops.” I say, getting dizzy.
“It was a tootsie pop” The nurse looks panicked and immediately you can see she KNOWS what is going to happen to him. She was an ER nurse, she knows anaphylaxis. She ran off, grabbed the package out of the trash and there it was in bold letters: “MILK”.
(ok so let me interject right here, so I can get past this post traumatic stress. This had to be the scariest moment of my life. I am staring at him, AFTER he ingested his CLASS 6 100+ highest off the score allergin and all I can think is, “why hasn’t he died? Is he cured? Maybe he is cured!” Yes I know that seems ridiculous, but this is the denial I actually live in. This is what happens when you have such a good four months… you believe, that your child CAN be healed. I guess he can still be healed, but lets just say he wasn’t.)
So immediately the cloud of protection came off him, and we see him deteriorate immediately.
Grabbing his Daddy’s legs hugging him, “I am tired. I want to go lay down.” Not MY Boy. Not at CAMP. The place he has been thinking about for months. Lay down?? Oh God!
We carry him into the med lodge and the nurse sits Aiden, now very quiet and with only one fat hive on his cheek, on the couch. She says, with her stethascope pressed to his back, “Aiden breath in.” And across the room… I hear the wheeze. The grasping of his lungs. It was like he was breathing through a straw. I am just now praying that noise gets removed from my memory banks soon. Although I think it is stored now with all the other terrible vissions of him blue and wheezing I have tried to pray away.
His nurse stands up, and looks at me and says, “I think we need to epi pen him now before this gets even worse.” Aiden begins to scream which of course triggers baby Mason to scream. And there I am in the midst of my two sweet boys screaming, I calmly grab the epi pen look at Aiden and tell him, it will sting for a moment but you need this. Nothing calms him. With three people hold his fighting body down, I find the spot on his leg, and do it. Jab. Number 18.
So did I mention camp was ruined? That it was a nightmare? At this point, I am still not sure if he will live through this because this is his worst food allergy, MILK, and for the first time in his life, he INGESTED it. Not just touched it, and rubbed his eyes, he had it IN HIS BODY. I wanted Aiden to vomit it out. I wanted it out of his body. Because I knew this was bad. In him, it was like a time bomb and I just wanted it out. The ambulance arrives, at our very remote location at camp, and the nurse steps in and tells them he needs IV solumedrol (steriods) and benedryl asap. They paramedic is cocky and thinks this is no big deal, but after we pounded them with Aiden’s history and through out words like “cardiovascular shut down” they decide to react. They want him in Atlanta, at his transplant center. I wanted him there too, but what if while in the ambulance he did it again?? We already gave him massive doses of benedryl, so we decided to take the 1 hour drive to atlanta. They assured me they could do every measure to save him there, and if not they would re-route to another hospital.
Did I mention camp sucked?
SO they call it a ‘code 1’ and blast the sirens and fly out of there. Code one may mean: “we better get there fast or this mother will kill me” I dunno… but it is what they called.
So Aiden can’t keep his eyes open. He is drunk. His o2 sats sat were lowered, but his heart monitor was showing some abnormalities. Aiden slept, not waking to prompting. And I had a heart to heart with the paramedic. Lets just say, he “got it” when we arrived in Atlanta.
Aiden wakes up at “Hope and Will hospital” or “Wheezy and Queazy hospital” or “ The hospital with a the good play room” which ever Aiden calls it. And he hates me. HATES me. Won’t talk to me. Doesn’t want me in his room. Hey he is only 4, and he knows I just punched him in his leg with a HUGE needle. Once the super hero Daddy sweeps in, all is better and I am asked to leave to go back to camp to pick up Mason. (yes our friend’s the Lincolns were dumped an 11 month old baby in their lap, and watched him and loved him while Joey and I focused on Aiden. Thank you Karen and Mark, I don’t know what I would have done with out you guys. Thank you for loving Aiden and our family. We love you too.)
So because he INGESTED the milk, not just dropped from touching it or breathing it like normal, but because this poison was sitting in his body, they admit him. They keep him on a heart montitor all night, since they saw some abnormalities earlier. And little Aiden has now left Transplant camp and has entered Camp Egleston, or children’s healthcare of Atlanta. The crappiest camp around. (no offense CHOA, but you don’t compare to canoeing and mini golf, and you surely don’t compare magic shows, and swimming in the pool)
Aiden did ok through the night, his heartrate jumped to the low 200’s a few tomes while he slept. He had high dose IV steriods, and then high dose oral prednisone he will be taking for the next few weeks.The problems really didn’t start until yesterday about 7 ½ hours into the car ride home from Atlanta. Aiden began to sneeze. Cough, turn red. His nose was running and he was borderline anaphylactic AGAIN. Just because he is so on fire. Maybe it is because there are tiny milk protiens floating in his blood, I dunno, but he is sick.
We dosed him with benedryl through out the night, and all day today. He has been sneezing and coughing on and off. Through the benedryl. I am honestly getting a little freaked out. In about an hour I will be taking him in to see his pediatrician and see what she thinks. The steriods, immune supression, Zyrtec, benedryl, and every other drug he takes isn’t calming him down. I also have a call into Atlanta. I have to say I am feeling defeated, and miserable. I am angry and just all over the boards. My two main issues are as follows:
1) He has been exposed to milk in a big way. He hasn’t ingested milk since he was an infant, and now I am scared any chances of growing out of it, just got thrown out the window. (and yes this is the denial I have that even allows me to think he can grow out of this MESS his immune system is in, although all his immunologist think it will never happen) SO I am just feeling defeated and sad that in one stupid lolly pop, all those antibodies to milk, that we have tried to stave off, have been triggered. With one careless mistake.
2) Don’t feed him. Just don’t feed him!! I almost lost my child. My love. If Joey and I wouldn’t have been there, would I have even been able to be at his side? Kids don’t have to eat all the time do they? Can’t they just not eat for 1 hour? Just don’t feed him
So basically, camp was terrible, it wasn’t even camp. It was a needless hospital stay, and now a child who is sick and not well in result.
The days before camp though, I will emphatically state were some of the best of my life. I have never been so happy as I was all week with my family. It felt so good to be just with one another, feeling rewarded for all the bad stuff our Aiden has been served. I relished in seeing him ride the water rides at Dollywood over and over. And of course the big black steam engine just brought tears of joy to his Daddy’s and my eyes as we heard the “ALL ABOARD!”
Anyway… check in soon for chronicles of a family vacation, with more pictures. I promise it will be less about this part, and more about what we all try to focus on… the GOOD STUFF.
Love, Lisa
Friday, September 1, 2006 6:49 AM CDT
*** Just updated: Baby Rani, has flown to Heaven. Fly sweet angel. You are now whole and healed in Jesus's arms. Please pray for this precious family, that we have grown to love on our liver support group. Angel Rani.
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Orginal Update:
ok yes... I know the fall leaves back ground is a bit much considering it is still full hot summer, but lets just pretend and get into the spirit...
Today we leave for vacation, and then Atlanta, and transplant camp.
Transplant camp.
I am getting choked up thinking about it honestly. When Aiden was diagnosed many things blew me out of the water. I was half way in shock just waking up bedside my baby in the hospital. The looks from the nurses, told me how seriously ill he was, but after time I acquired a thicker skin, and knew to make it to the goal (which hasn't been yet defined) I would need to put my guard up. Incedently, MY "guard" is like a 500 foot thick steel wall. To chissle through it, sometimes takes a sledge hammer, but there are moments when only a feather can shatter my wall. And there are three things I know that have done it effortlessly. Halloween in the hospital, Happy Tails, and...
Transplant CAMP.
When I was pregnant I saw this adorable Halloween costume at Old Navy clearance. It was an ear of corn. Little did I know when Aiden’s first Halloween rolled around we would have been in the midst of a 2-month stint in the hospital, with our matching yellow jaundiced baby. (also little did I know the whole transplant team were a bunch of corn-huskers from Nebraska and loved his costume)
(this picture is us many months before halloween.. Aiden was so healthy and I was so excited about him being dressed up that I would make him wear this out fit all the time.... when Halloween came around, he had cholagitis, and was the color of the suit)
The nurses on the floor dressed the children, who didn’t have Mommy’s and Daddy’s there, in Bug costumes and so many other outfits. Winnie the Pooh walked the floor on several occasions holding hands with Strawberry Shortcakes and even a few Spider Men joined in. We all paraded around the hospital trick or treating at every floor. The families were all there, smiling through their tears. It was like these little sweet children, were brought out of their sickness spell for one night.
It was especially tough for me that day. I always imagined Aiden running door to door in our neighborhood carefree and screaming TRICK OR TREAT!! Instead we placed him in a wagon ran his IV pole next to him and pushed him through halls along with cancer children, and children so immobile they couldn’t leave their beds. (litterally pushed on beds on wheels) Aiden became seriously ill Halloween night so instead of continuing the trick or treating, we put him in his crib and watched the beautiful array of children walk from floor to floor. That was a gift from God, because it changed my life.
Sitting there, I was able to witness one of the most beautiful sights of my life. Fairy princesses dressed in glitter. Fire men who turned their wheel chairs to Fire trucks. Kids were clever and decorated their IV poles. Who would have known there was Chemotherapy pumping in their veins as they smiled and giggled like it was the best Halloween of their lives? However for some it was the best... and some it was their last.
Another time when I was blown down by a feather was from a little inservice thing they do in Atlanta called, Happy Tails. What, you wonder, is this? Well. Let’s back track. In college I volunteered with a group of friends from the vet clinic. I was a Vet tech, and my co-workers/friends and I would visit the local nursing homes and children’s center with certified pets to bring cheer to them. I remember doing this in college, where I was young free and of the "it doesn't happen to ME" mindset. I remember thinking how terribly sad it was to have to bring just something as simple as a DOG into these people’s centers to brighten their day. Little did I know that these wet noses and furry tails wagging would come full circle and make my baby smile too.
It was yet another 6 week stay in the hospital. He was getting worse. We came down the elevator saw the rush into the family playroom, and I never knew I would not be able to enter. The pain of the acceptance that NOW I was here needing a “Happy Tail,” and that my sick little son was getting to see a dog for the first time in months. I watched Joey wheel him into the room with white sheets and kids squealing with joy. I stood outside catching my breath and sobbing out loud. (you know the gasping, choking sobs? that was me.) I wiped my tear-streaked face and entered the room. I thought about our Jack Russell (Rolex) at home, and missed him terribly. I thought about the huge leap my life had taken in just the two years since college. I choked it down and got back into Mommy role. Back to my mantra.. “this is just the beginning.”
I seriously could NOT look those vounteers in the eye, because I was afraid my big mouth would let loose, and reveal my newly found revaltion.. "THIS COULD BE YOU!" and then I would scare them away.. not what I would want. So looked at the puppies and Aiden. I cringed when the puppy licked Aiden’s face but then smiled when I saw his eyes sparkle with life and joy. It had been a long time since we saw that sparkle. The feather had attacked again, and I never saw it coming.
Then camp... can you imagine? (uhh if you are a liver mom reading this I bet you CAN imagine) When Aiden went to camp for the first time he was just a little guy. He had his broviac still, and couldn't swim or really participate. It was probably a good thing, because it was just me and him. Joey was at home, and I needed to just soak this all in. Little warriors everywhere. But what struck me so amazing and moving was how I never knew which ones were the warriors or which ones were the siblings. Sometimes I could tell, but on most occasions I reveled in the fact that once healed they all looked the same. Well.... with shirts on.
In the pool, that is where I was struck down for good. A pool full of holes, scars, and lines and most of all happy faces. None of the ones who were puffy from steriods were picked on, no one was afraid of their scar showing. Parents gleamed.. and I mean GLEAMED at poolside watching their children FIT IN. We were all thinking the same thing, "That child is one year further out than my child..." HOPE
Camp, a place where I just never ever thought i would be when I was pregnant with Aiden, but now a place I am just honored to attend. I have memories at camp that I won't forget. The last time I attended, Haley was there.
Kendall, Haley, Sarah, Joey and Aiden
We all hung out in the "cool cabin" Sarah's and Haley's cabin. The kids would do some kind of modern "cool" patty cake thing dancing and hooting... and I of course the big adult dork jumped in dancing and hooting with them. I can remember Haley's face laughing at me. She just thought I was a nut. I remember Cheryl and Bruce cuddling Kendall on their bed, smiling at their girl, and now I think it was my favorite memory I have ever had with them. Karen and Mark were on another bed laughing at us all, the old vetrans of the group. Three livers and 18 years into the game.
I remember little Brooke, just two years ago, running up the hill with her baby sister. That is the last time I saw her....she too will be missing next week, as she is in Heaven with Haley.
Camp was always the happiest place on Earth, now a tinged with sadness because I know that some kids have their last season there. That it isn't just one child, it happens every year. I cry for their mommies almost everyday, they love their children so much and miss them so much.
Camp though, is also a place of VICTORY! It is also a place where I get to see the teen boys who are so handsome and grown. I am like a sponge soaking up their lives. Listening to their mothers tell me about winning the baseball championship that year, or learning to drive. 
Daddy and Aiden at camp 2 years ago
So here we are 2006, getting ready to go to camp, see old friends.... miss old friends.
I can't wait to come back and tell you all how it went... Have a joyous week, and Praise God for all we have.
Love and hugs,
The Hawk Family
Tuesday, August 29, 2006 9:54 AM CDT
Oh that just stinks... after writing a puliltzer prize winning update... yep you guessed it. Lost it. Other CB moms are more savy than myself, and have learned to do it on Word or some other safe place, but I like to walk on the wild side... and man I lost that update.
SO here we go again:
prepare yourself for TMI (too much information)I have been puked on, snotted on, diahrea-ed on, ear infection-ed on over the past several weeks, but we are finally healthy. As my good friend Cheryl says, "tis the season"... So to celebrate the wonderful fact that no one is leaking from either end in this house, and that there is a hurricane that is sucking some of the humidity from Florida, we went on a nice long walk/bike ride last night.
My very cool son, ran excitedly to his room to get his "bike riding outfit" on. Joey and I had to litterally look away to keep a straight face and encourage him to express himself. He was strutting his his very cool outfit, and muttering something about being a big boy, and "cool" and "awesome". Great. Prepare yourselves, I am sure that this is going to be on the cover of the fall issue of BOY VOGUE..
Yes ladies and gentlemen, his very cool hat is tilted just enough to accent that he is indeed the real deal… 
Note to whomever designed the “Thomas the Tank Engine Conductor outfit”: In desgning the hat, it seems to make him look more like the guy that works at the bakery at Publix. I am not sure what you can do about this but maybe a little more firmness to the material? Thanks signed, consumer of all Thomas products (especially the cool ones like this)
And of course, little brother is just at styling and profiling. (Gotta love friends who have perfectly well dressed little boys that are a tad bigger than yours)
“hey ladies…. goo goo …….ga…..ga”
Ok so things are finally calm in our house, infact I got a call from the tx team yesterday and they told me we can move Aiden to once a month labs. I just love that cute little gesture. I mean it isn’t like it ever works out that way, but hey… it is the thought that counts right? Aiden has an appointment with a new “OLOGIST” as we call it in our home. This one is a “NEPHR-ologist”… Aiden has been spilling protein in his urine and they are hoping that she may have a clue on the abnormal labs, fainting, vasculitis, etc… Of course, I am sure it will be yet another official diagnosis of, “Ummm I dunno…err.. he sure is cute”.
For all of you medical coders out there (KAREN) that is:
Dx:: cutebutconfused
That appointment is October 2nd and we are waiting (always waiting) for the referral to cincinati for his eos. The team likes to tease us like that. “We want to refer him to a specialist in this field…” ok…. Waiting… but enjoying the health of our son while we wait.
He was doing no hives for two weeks, but decided to break that little streak the last few days. Hivey, itchy, red, bla bla… but still NO ANAPHYALXIS since April. Wow… amazing. I am now in the fantasizing mode of : “maybe Aiden got one of those “poof” miracles” but the recent hives, and swollen lips remind me that God works in His own way. Maybe it is the cellcept. After months of grueling talk over what meds would make him better, what level of suppression would work, my medical advisor (Cheryl) and I thought the cellcept would be it. It didn’t’ work the first time around, but there was so many different issues then… maybe now it is working. Although I do think that the steroids are just the “poof miracle” I was looking for. So God be the glory what ever it is. Aiden is good.
It looks like we have decided on a ciriculum for Aiden’s homeschooling. www.abekaacademy.org waiting for my demo DVD but it seems like we have a winner. People keep asking me, “Has Aiden started his homeschooling” I honestly think of our days together, playing Thomas, in the dirt, in the slip n slide…. Uhhhhhhhhhh “he is on summer vacation still”…. Sorry kid; The teacher needs a detention. Lol
Well of course I want to end with a prayer request or two. My dad, (Aiden’s grandpa) will be retested for his cancer next week. Please stick his name in your Bible, pray for his healing.. I just would love to see that man enter the Buc’s season with no treatment. And of course, my mom could use a break from the worry. Married 36 years and loving him more every day.
And please please pray for baby Rani. Things are looking terrible there. She is so sick, and just needs to hold out a little longer for her liver. Keep fighting Rani! We are praying! Baby Rani
Thanks for checking on us!!
Love,
The Hawk family!
Tuesday, August 22, 2006 3:23 PM CDT
NEW FAMILY MOTTO:
We may be crazy but at least we are having fun!
So I just wanted to update with the "day in the life" of Aiden getting his labs. I have actually never taken pics of him getting labs...*(well probably because he wasn't sitting this good before, and it was slightly traumatic. lol)
SO anyway.. His phlebotomist Fatima, has asked Aiden to draw a picture of her drawing his blood. I assume she wanted to psycho-analyze the mind of a kid who gets labs done as frequently as him... but as you can see in the drawing Aiden made, not too much to analyze. Just a bunch of happy faces, getting labs.
if there was anything to analyze it would be the figure to the left.. ME.. sort of drawn crazy. In the green chair is Aiden. He is red for the blood, and you can see the tiny needle in fatima's hand. Aiden noted that Fatima's head looked like a pineapple. Nice. Also on the cart there are more tubes and stuff. He was thrilled to give it to her. (ps/ Fatima has been Aiden's phlebotomist since he was 1 week old!!!!)
OK so getting labs:
step one: waiting and playing nintendo. 
Fatima getting his arm ready. Look at Aiden all by him self!!
"are you sure it won't hurt??" he is so brave!
"It didn't hurt! and I didn't cry!" My brave big boy! you have come soooo far!
Blood draw is all done, and Aiden is all smiles. Sitting in Fatima's lap with her picture.
So that is a day in the life. Not so bad. He is amazing to me. So brave and just submitting. He knows it pinches, but he knows he doesn't have a choice. I am so proud of him each time he goes, even if he throws a fit and needs three people to hold him down. Sometimes when he throws the fit, I am even prouder that he has such fight. But obviously I am more happy that he trusts us and is ok with it all.
So results weren't too great. his hemoglobin, and hemotocrit back out of normal. High again. His eos were super high, and that allowed for his whole differential to be messed up. Labs here and there were out of whack, his platlets are rising again. Go figure. But it is just numbers.
At this point in time, Aiden is healthier symptom wise than he has been in a very very long time. Maybe years. He has not had an anaphylaxis in 4 months. He has not required benedryl in 13 days. This has never happened. I know the steriods are supposed to be terrible and dangerous and all that garbage. I know... BUT they work. And they make him healthy. So numbers may be weird, and out of whack... but my big boy is doing better than ever in MY opinion. :D
Thanks for checking on us!
Give you kids a hugs today!
Love, Lisa
Friday, August 18, 2006 6:22 AM CDT
Two boys on Steriods...
yes you read that right. BOTH of them on steriods. ahhhhh!!!.... I woke up this morning at 6:00 to find Mason was up at 3:45AM and Aiden up at 5:00AM.. My husband doesn't even wake me up, the three maniacs are all loud and watching TV in the living room. I felt terrible that I was asleep through this (terrible might be too harsh of a word...I shall not tell a lie....I am actually thrilled I slept through this) but now I am wondering if Joey is taking sips out of the prednisone bottle. Who knows! But the Hawk House is WILD today! WHoo hooo
OK, why?, you might be wondering is Mason taking prednisone? Is it some sort of steriod fantasy of ours? Do we just think it will help him grow big and strong? Do we like the added energy that the super-baby-11 month old now has??? Nope none of the above: Mason simply has croup/ parainfluenza virus. No biggie.
But now.. the dreaded sneezing is coming from the big boy. Ugh. Did I mention that we are scheduled for our very very very first family vacation ever in the world in 2 weeks? Did I mention that? Ughhh so lets just hope that IF Aiden gets this, we get over it quick (lol immune supressed) and that it doesn't hinder our plans. Because the first leg of the trip, we are seeing tiny, adorable, precious, cutest-ever, baby Dale, and I am not willing to be the bearer of illness into his little life. So although this is a tiny prayer request, completely selfish in motive, can we just pray that the steriod-boys get better soon?
SO moving on to much more pressing news: Aiden is now offically regeistered for SOCCOR! He gets to meet the coach on Sept 16... uhhh yes in a MONTH. Talk about a tease. Aiden (whom like I said was already awake when I woke up)ran to me and said, "Is it SOCCOR TIME!"... oh my goodness, another month of this? Well... actually more, because then I was informed by the soccor league that the atcual GAMES don't start till October 29th... uhhhh so it is offically torture. I am sure once he has forgotten about the "mysterious soccor" that he will meet his coach.. just in time to harrass me for ANOTHER MONTH till it starts for real. Geesh.
I must add.. as I was signing him up... there was large bags of peanuts in the shell at the concession stand. Ugh. This must be a joke. But alas... I DID manage to sign to vounteer to work the concession stand at his games.... Muhahahaha (evil laugh)
Peanuts? "uhhh I am sorry, we sold out."
yes and don't worry, I won't tell a lie, I will just be sure to purchase every bag at each game. sneaky aren't I? (well there was only 3 bags there.. so I am assuming I just didnt' commit to buying boxes of peanuts.) What I will do with the 'death capsules'? I don't know. Give them away to some cast aways on a deserted island ...
So now Aiden is "signed up" for soccor, although it will months before he gets to see this dream come true. I am already thinking about all the T shirts and parafanalia I will purchase as my speedster plays his first Game. I am imagining the crazed Bucaneer fans with their priate hats, face painting, and beaded necklaces (yes I did just describe my parents - HUGE bucs fans) I can adorn my self with one of those "MOM BUTTONS" you know one with a picture of him smiling cheesy. I am sure no one would think twice when I come with my fog horn, pots and pans, and soccor hat that I will contruct from an old soccor ball with a hole in it..... There is one thing I WILL guarentee... as I stood there like the biggest dork filling out his registration and medical release form (a whole nother update).. I will guarentee that Aiden was has the only Mama with tears brimming her eyes as she handed in the forms. The lady was staring at me smiling, I was smiling back at her... I thought we were really having a moment... and then she says through he clenched smile, "uhh is that all?? Can you move aside for the next mom?" realizing of course I was probably looking like a freak. Hey.. if the shoe fits!
OK so enough about me rambling. I have just one set of photos I have to share. Our very wonderful friend Michelle babysat Mason last week. Mason and her son Ian are just the cutest little buddies.. so here is the photos that she sent me: 
1.) Mason has phone
2.) Notice Ian's happy "I got the phone" face :)
3.) Ian thinks he got away with it!
4.) Mason says, "I don't think so!"
5) Now they both have phones.. "What is the fun in THAT??"
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I really liked this, thanks Frank:
He maketh no mistake
My Father's way may twist and turn,
My heart may throb and ache,
But in my soul I'm glad to know,
He maketh no mistake.
My cherished plans may go astray,
My hopes may fade away,
But I'll trust my Lord to lead
For He doth know the way.
Tho' night be dark, and it may seem
That day will never break,
I'll pin my faith, my all in Him,
He maketh no mistake.
There's so much now I cannot see,
My eyesight's far too dim;
But come what may, I'll simply trust
And leave it all to Him.
For by and by the mist will lift
And plain it all He'll make,
Through all the way, tho' dark to me
He made not one mistake.
A. M. Overton
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Prayer request:
Pray for The Haley Vincent Foundation, as some very exciting things are progressing! We are really seeing God work with us. please visit:
THE HALEY VINCENT FOUNDATION
to find out how YOU can help!
Love to all! and be sure to remember the following in your prayers:
Aiden and Mason with their colds
Sami and her brother kyle SAMI just got her LIVER!! Kyle is in the hospital too!
Isaac As always
Precious Natalie Bear who is still dealing with the on and off again hospitilzations with her PTC tube.
And all the kids who I have not mentioned!
Love, Lisa
Wednesday, August 16, 2006 7:44 AM CDT
Well, things have been hectic and crazy around here. Yesterday was that day that I just needed to veg out on the couch and play with my boys.
Last week, Aiden developed a nasty ear infection, and with out going into details, I just never knew that you would need klenex for an ear infection. Take my word, it gives new meaning to the word disgusting.
So with that, I left for the weekend (left really doesn't apply since I was 12 miles from home) with my fellow liver moms. The weather was beautiful and the company was great. I really had an incrediable time just laying by the pool, and relaxing. OK well.. I admit I did have nightmares both nights away from the boys (anyone say control freak?) but hey.. I was relaxed as much as I could be. We could have asked for more beautiful weather! It was so really incrediable just being able to talk about things you sometimes feel guilty mentioning because you know you have everyone else glazed over. So it was really great!
I unfortunatly had sad news hit in the middle of Saturday, My dear sweet Uncle Vernon passed away. SO my Dad and I just the two of us drove 6 hours up to be with the family.
Now let me tell you, I don't even know if we make men like him any more. I am pretty certian that there is a country song like this, but I think he is a of a dying breed. Uncle Vernon was the County Extension Agent for farmers in west Georgia (are you reading this with your accent? Geo-w-gia) for 35 years. That means this man, who always had bushells of peaches and tomatoes in the back of his truck, drove for hours and kicked up dirt with the toe of his boot, talking about the weather and the heat... not because it was just on his mind, but it was the livelyhood of the farmers. He was a man of integrity! He was soft spoken, southern, and gentle. I remember being a little girl and playing on his back porch. Something good was always on the stove, (yes m'am I DO eat my collards and cornbread sometimes) and Uncle Vernon would show me things out in the garden. Giving me an onion, or a big red tomato. I remember thinking how much like my Daddy he was, and how sweet and pure loving he was. It wasn't just the veiw point of a little girl enamoured by the country life, but it was what everyone said of him even till his death.
Uncle Vernon, thank you for taking your car driving to that awful city of Atlanta, and sitting there for hours on hours while my baby was being transplanted. Thank you. I always knew when our family would come and visit, you would always come over, hands trembling a bit, but always ready and willing to play with a rambuncious Aiden. You drove to our wedding, and you always thought of us. I am glad I got to know you as an adult and I hope my sons somehow grow to be somewhat like you. As much as they can be in a life so indulgent and so worldly.
As I sat there in the summer heat in the small town of Butler, I thought to myself, if only there was a good children's hospital right here... but for now, our lives are leading different roads. Please pray for Vernons' family, but let's rejoice because this is a man who lived a long wonderful life and we KNOW when he closed his eyes on Earth, his eyes opened anew with the face of Jesus smiling at him.
Prayer request:
Isaac is still not well... www.caringbridge.org/sc/isaacsjournal
pray for healing and strength.
Pray for the Lincoln family as they deal with Jon's infection www.caringbridge.org/ga/jenandjon and if anyone wants to donate to a worthy cause this family has been dealing with transplant for 20 years and their transplant fund has dwindeled due to the incrediable copays they have to pay.
God bless,
and rest on the Blessed Assurance that your you have a place in Heaven like my Uncle Vernon if you just accept Jesus.
Lisa and the whole Hawk family!
Monday, August 7, 2006 6:47 AM CDT
Well the butterflies from our butterfly garden have "hatched" or developed or whatever butterflies do from they "emerge". 
So after having Orange-y (and the gang) fly around their little habitat for a few days we decided to set them free. 
(this is them from the top view of the habitat.. they are in there somewhere)
Joey, Aiden and I (Mason wasn't helping to much) planted a butterfly garden in the back yard so they could live here at the Hawk Plantation. 
It has been so exciting to "grow" butterflies and now see them in your yard. Of course 'Orange-y' is probably NOT OUR Orange-y but good enough, even I get a tad excited when I see them drinking from the flowers in the yard.
I was reading that the butterfly is the international symbol for organ donation. It makes sense. Growing from one thing to another... changing dramatically for the better. Of course organ donation is so complicated and not everyone gets to have their chance to be butterflies, if only there were more donors. More people who would just tell their loved ones that they want to donate. (this is your cue)
Speaking of butterflies/recipients: I am so very much looking forward to this weekend. Two women who I have become friends with from our liver support group are flying down and we are going to the beach together. What a sight. All three of us Mommy's to boys that were born with Biliary Atresia. All three recieving liver transplant before they turned one years old. All three boys with amazing stories and battles behind them and ahead. Anthony and Tanner
The odds say about 250 children are born, in the US, a year with Biliary Atresia. Of them less than half are boys. And three of their mothers will be soaking in the rays this weekend, patting ourselves on the back for a "job well done"... well a job.. that is not done. I think for me it will be sureal and emotional. (imagine that... ME, emotional?) We all have so much in common, and Tanner's mommy and I have one extra thing in common, Tanner suffers from severe food allergies post transplant as well.
Speaking of food allergies, I ran across this little drawing display the other day and just had to post it here. Little kids who have food allergies, drawing what they dream life would be like for them if they never had food allergies. I thought it was sweet, and honest. I wanted to post a few here.
Being a mommy of both a transplant and life threatening food allergies I think I am fortunate to be able to know that I should rejoice that my child can just eat. That he isn't tube fed, and that he is here. It is a blessing to me that the transplant came first (although since the prograf is likely the cause of the second it would HAVE to be this way...) because I have a 'live life to the fullest' kind of attitude. However, I am only a human. A Mommy who loves her child. And sometimes I want to draw my own drawing.. one with my son at school, eating snacks, or at a baseball game with Daddy, or running after the icecream truck instead of us packing up and leaving because now all the kids are sticking milky messes. I think about my drawing and I think these kids did a pretty good job for me.
Prayer request:
Isaac is needing prayers. He has been a regular on my prayer list and I just hope you have visited his site, read his story and pray for him. I spent an evening one time reading his entire journal history, and I was just in awe of the faith and love that family has. If you have the time, take it and read about his travels. About how he is a fighter and why we are praying for him.
Also please continue to pray for Angel Haley's Family as well as a few others:
Kyle
The Lincoln's
And my Dad, whose last cancer treatment is TODAY! We love you Grandpa Lovern! XOXOXOX We know you beat it this time!
God bless,
Have a wonderful week!
Lisa
Monday, July 31, 2006 8:23 PM CDT
Hello everyone! (is there anyone out there? hahaha) I swear sometimes I even forget people read this site, I just journal here to vent, or document, or just as therapy.. then suddenly I am at the grocery store and I run into someone I haven't seen in a while, and they are talking about my deep dark secrets.... OH YES! I POST THEM ALL OVER THE INTERNET... AHA! forgot for a moment.
SO anyway, things are pretty calm here still with moments of excitement. Aiden fainted last week, we thought it was surely his glucose, but today's fasting glucose level was 92.. so that wasn't it. Then on Saturday, he woke up.. LITERALLY crawled out of bed with his face HUGE and swollen and red. Like his whole head was one big hive. It was bizarre.. He was digging and itching, so I gave him benedryl, and nothing. It wouldn't go away! I decided after an hour and finding a red rash (keep this fact in the back of your head, it will apear later) that maybe for once it was viral and not allergic. So I called the pediatrician and they told me to come in. (love Saturday office hours). She sat and stared at his swollen nose, (about 2X it's normal size) and red swollen ears which were HOT to the touch, and said, "uhhh he needs a steriod pulse"... SO back on 30mgs of prednisone for 3 days, then 15 for three then back to our normal 7.5 mgs daily. Nice. The face is clear and he is HUNGRY and wild. (haha anyone who has been on steriods gets that joke)
SO now onward to labs today.. they are all up again. Hemoglobin high, hematocrit high, MCH, all these RBCs High high high.. weird weird weird.. but yes the rash is back.. and yes it is a symptom of the high counts. I knew it before labs were drawn, I could just tell. He was red/ veiny and rashy again. And I don't get it.
So otherwise he is fantastic. Joey came home the other day from work, and Aiden was running around in his tighty whities... He heard Daddy's truck pull in, and ran to his room and grabbed the "T Ball" bag. You remember the official T ball gear. the socks that pull up to his butt? well Aiden gets the gloves on, the socks, the wrist band things, and tells me he is gonna play some ball with Daddy... well, I dont' totally know why, but my heart swelled like it was going to explode when I sat and watched my boy, playing ball with Daddy. There is just something about him, in his pure raw BOY-NESS that makes me glow. 
getting his gloves on... doing "boy mouth".. why can't boys close their mouths when they concentrate?
still working on getting dressed. But man he has his crocks on.. he loves those things
with him standing here.. I just melts me.
ATA BOY! You had your eye on the ball! Great job!
And what was my baby Mason doing all the while?
sitting with me watching of course!
Boys. Gotta love em. I love how they just can't sit still. How they can launch themselves from any peice of furniture, land on their head, and laugh at themselves. I love how they get dumb expressions on their faces when watching sponge bob. Half smile, half zombie. I love how they wanna be super heros and save the world. I love how they can snuggle in their mommy's lap just when their tank is empty and fall asleep. I love the little dinsours on socks, and cars and trucks on diapers. And of course my favorite I love how I can already see their Daddy in them.
I can see the Daddy in my little one especially:
ON a different note, please note that there is a very sick little boy that I just am rooting and praying for. Isaac we love you, and we know you have been through so much more than any child should. Get well, and feel our prayers.
Have a great week, and hug your family!
Much love,
Lisa and the Hawk boys :D
Wednesday, July 26, 2006 11:13 AM CDT
In medical news:
It has been 13 1/2 weeks since Aiden has had an anphylaxis.
The longest he has ever gone. I am thrilled. Thrilled doesn't cut it. I have enough adjetives to fill a page. They range from Happy to hesitant, to hopeful to greatful. So I will just say.. I am thrilled.
IN other parts of life: (general update)
We had a wonderful time in TN. Aiden loved loved playing with Kendall (Haley's sister). I never saw him. he was so independant and off on his own. We knew he was around though, cause we would intermidently hear:
BANG! CRASH! BANG! CRASH...
and it would be followed by a barrel laugh from our boy.
The foundation raised $2000.00 over the weekend. And we were thrilled with that. I was just happy to see the Vincents. Always missing that one little Vincent that connected us in the first place, Haley.
****
Aiden has been swimming and playing and just enjoying summer. He recently played "daddy" with his friend Sophie, as he was not only the Daddy but the doctor that delivered their baby "Rose". And in typical Aiden fashion, as they were playing doctor, Sophie had to "ride in an ambulance, and was in room 689" ummm.... seriously how many kids, when they play doctor, know to have a room number?? This made me laugh SO hard.
Yesterday though, Sophie and Aiden played "married" I was glad that Baby Rose was going to have a Mommy and Daddy that were married. As Aiden slipped the ring on to Sophie's finger, I just thought wow...this was a whole new domestic life he has learned from his little 'girl play mates'. SO fun! Although it did cross my mind that it wasn't a terrible time for some play with Spencer so they can roll in the dirt and play with rocks and sticks.
Life is good.. our little stinker Mason is crawling all over. So quiet he just sneaks up on you. He even tried to pull up on the couch. I was shocked to seem him standing there. And then he was shocked and began to flap his arms in excitement that he threw him self on the floor. Oopsie daisy!
With him crawling I have now I have realized how filthy my house is. Cat fur and leaves on the floor. This morning the rambling man, Mason, was chewing on a gum wrapper. Pretty disgusting, and of course forcing me to get my butt in gear.. off the couch with my bon bon's, magazines, and pedicures, and get to work. (uhh can you smell the sarcasm?)
In other news, my Dad is doing good! He changed his treatment days to Mondays so this friday we will be dropping the boys off for a night out for me and Joey. A date. Ahhhh the good ole days. But dad is feeling great and has two more weeks to go, and then we will see if the cancer comes back again.
Summer is here, but homeschooling starts next month. We are doing an "animals around the world" theme for our first lesson. We also ordered a butterfly garden for Aiden. The butterflies came in as caterpillers, they are in their chrysalis (aka old school called it a cacoon, and in the Hawk house either is right) right now, and soon will be emerging as beautiful 'painted ladies'! I love to have these hands-on lessons. Aiden is learning how all of God's creatures are formed perfectly for their duties. And the little butterfly in their cacoon shake and wiggle when they feel threatened. I told Aiden it was a "natural instinct". ANd that we have them too... (hence my mommy claws that come out when certian people of the medical world blow my kid off.. but I digress) It has been great! I think homeschooling is going to be so exciting, and he is so hungry to learn. I also love this time with him. Really something that seemed like a sad thing, him not going to school, has turned out to be a gift!!
In other news: Joey and I are also looking forward to our first family vacation ever. NO HOSPITAL at all. We will be taking time off, for the first week in September, going to the moutains, and enjoying some family time. The trip will end with transplant camp in Atlanta area. A two day family weekend that is filled with a bunch of wonderful children from all three solid organ transplant aspects of the hospital. There is cannoing, cabins, swimming, mini golf, and then education for the parents. They even decided to not have ANY peanut butter at the camp because of Aiden. YAHOOOO! I and a few other parents will be lightening a candle for the children that we have lost. Haley and Brooke are just two I know about.
I have updated about everything I can think about, except the dog, so here it is:
Rolex is getting his teeth cleaned monday. I am embarressed as a vet tech (yes... seven years as a vet tech) that I have allowed his little mouth to look the way it has. Poor dog, so he will be heading to the dentist/vet monday and Aiden is all excited about it. I told Aiden he can help me brush Rolies teeth. He looked shocked and horrified... then thought about it and said: "Mommy.. that is awesome" I don't know what he thinks is awesome, but whatever.
So that is it in a nutshell. Hope all is good with you, and thanks for checking in on our family!
Love
The Hawk family!
Sunday, July 23, 2006 9:15 PM CDT
Top 10 ways you know you have had a BAD flight:
(all research was gathered by the Hawk Family, on a small plane heading to Charlotte)
1)You know you had a bad flight... if you are flying, and your entire body raises off the seat. Meanwhile the drink you are holding is now floating effortlessly with no gravitational pull.
2)You know you had a bad flight.... if while you are flying peacfully, and suddenly everyone is screaming. Even men. Even your husband, whom you are not fortunate enough to actually be sitting by.
3)You know you had a bad flight.....if the small fragile woman that you sat next too actually now has your fingernails permently scarred into her arms.
4) You know you had a bad flight......if the screaming from the passenegers is so loud that the flight attendant, has to come on the speaker saying, "Everyone, please calm down". (revert back to #1 and you can see this didn't happen)
5) You know you had a bad flight.......if you can see the tops of the heads of the people in the FRONT of the plane. stop.. picture it.. yes, bad flight
6)You know you had a bad flight.......you spontanously break out into sobbing, cursing, or praying while flying. of course if you are some people I know...(whom shall remain nameless) this can happen even at Busch Gardens in the kiddy planes.
7)You know you had a bad flight.......if you are actually sore from the flight... Specifically head and neck pain. (Although your arms may be sore from holding on to the small fragile stranger next to you as well)
8)You know you had a bad flight.....if when you are flying and the pilot comes on to annouce that he will be choosing "a much lower altitude for the remainder of the flight, due to "turbulance"... and the plane errupts cheers/ cursing/ and crying again.
9) You know you had a bad flight......if when you DO finally land, and you are able to walk out with your knees still knocking, you quickly make it off the plane. Only to pass the cockpit with a pilot, and now several crew members laughing hysterically, with tear streaked face and tissues dampening their brows. NOT a good sign.
10) And finally the last way to know if you had just had a BAD flight IS......when you run to make your connector flight (with a four year old, 10 month old, husband, and all the junk that goes with them.) The flight attendant offers you TWO COMPLIMENTARY glasses of wine (yes she knows what flight you just got off of)... and you drink them very fast looking for something just a little stronger.
update on the weekend coming.... I need to get back to icing my neck.
LOve, Lisa!
Thursday, July 20, 2006 10:16 PM CDT
Hello everyone!
We are off! leaving on a plane to TN...the whole family is heading to the very first fundraisor for the Haley Vincent Foundation! A pancake breakfast at Applebees! I am really excited to just got see my friends Cheryl and Bruce.
Please say a prayer the air plane travel is safe for us. I have called and been assured they aren't serving peanuts (just this past month they stopped at US Air! yay!) Also pray for the fundraisor and the Vincent family as the are so bitterly-happy about all that has unfolded.
Visit:
www.thehaleyvincentfoundation.com
Much love!
Lisa
Wednesday, July 19, 2006 9:36 AM CDT
OK so... part two of my frusteration with no one being on board with the prograf causing allergies: thought I would share somethings with you all.
(FYI:prograf, FK506 and tacrolimus are ALL the same drug, just different names.) Please see below and know why I am fursterated:
What you are reading is the TITLES and info of how they suspect the prograf has caused food allergies. these are research studies, or papers on the topic.
1)Allergic disease after pediatric liver transplantation with systemic
tacrolimus and cyclosporine a therapy.
Arikan C, Kilic M, Tokat Y, Aydogdu S.
Transplant Proc. 2003 Dec;35(8):3039-41.
PMID: 14697973 [PubMed - indexed for MEDLINE]
From PubMed
~~~~~~~~~~~~~~~~
2) Tacrolimus and food allergy.
Pacifico L, Frediani T, Simonetti A, Chiesa C, Cucchiara S.
Transplantation. 2003 Dec 27;76(12):1778. No Abstract Available.
PMID: 14688538 [PubMed - indexed for MEDLINE]
~~~~~~~~~~~~~~~~~~~~
3) Systemic FK506 and post transplant food allergy in children.
Atkins FM.
J Pediatr Gastroenterol Nutr. 2003 Oct;37(4):525-6. No Abstract Available.
PMID: 14579850 [PubMed - indexed for MEDLINE]
~~~~~~~~~~~~~~~~~~~~~~~
4)Angioedema in pediatric liver transplant recipients under tacrolimus
immunosuppression.
Lykavieris P, Frauger E, Habes D, Bernard O, Debray D.
Transplantation. 2003 Jan 15;75(1):152-55.
PMID: 12544888 [PubMed - indexed for MEDLINE]
From PubMed
~~~~~~~~~~~~~~~~~
5) Food allergy after pediatric organ transplantation with tacrolimus
immunosuppression.
Nowak-Wegrzyn AH, Sicherer SH, Conover-Walker MK, Wood RA.
J Allergy Clin Immunol. 2001 Jul;108(1):146-7. No Abstract Available.
PMID: 11447402 [PubMed - indexed for MEDLINE]
~~~~~~~~~~~~~~~~~~~
6)Food allergy and tacrolimus.
Inui A, Komatsu H, Fujisawa T, Matsumoto H, Miyagawa Y.
J Pediatr Gastroenterol Nutr. 1999 Mar;28(3):355-6. No Abstract Available.
PMID: 10067752 [PubMed - indexed for MEDLINE]
~~~~~~~~~~~~~~
7)Life-threatening food allergy in a child treated with FK506.
Lacaille F, Laurent J, Bousquet J.
J Pediatr Gastroenterol Nutr. 1997 Aug;25(2):228-9. No Abstract Available.
PMID: 9252915 [PubMed - indexed for MEDLINE]
~~~~~~~~~~~~~~~~~~~
HERE ARE SOME MORE WITH LITTLE EXCERPTS: (they may be kind of tough to read, but they are worth it)
The Development of Food Allergy After Liver
Transplantation
Robert J. Boyle,1 Winita Hardikar,2 and Mimi L.K. Tang1,3
The acquisition of new food allergy after orthotopic liver
transplantation is now a WELL DESCRIBED PHENOMINON, mainly reported in children. The etiology of this phenomenon is at present unclear, but has been ascribed by some
to tacrolimus treatment......
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
(this is the one was my HOPE...)
Journal of Pediatric Gastroenterology and Nutrition
37:525–526 © October 2003 Lippincott Williams & Wilkins, Inc., Philadelphia
**Systemic FK506 And Post Transplant Food
Allergy In Children**
Lykavieris P, Frauger E, Habes D, Bernard O, Debray D.
Angioedema in Pediatric Liver Transplant Recipients Under Tacrolimus Immunosuppression. Transplantation 2003;75:152–
165.
Summary: Lykavieris et al evaluated 121 children treated
with FK506 after orthotopic liver transplantation (OLT) of
whom 12 developed food allergy (Transplantation 2003;75:
152–155). Liver transplants were performed for chronic cholestatic liver disease at a mean age of 1.3 years. The onset of allergic reactions to foods occurred a mean of 28 months after beginning oral FK506....
The suspected foods to which the children reacted included
egg, cow’s milk, peanut, soy, wheat, almond, lentil, fish, beef,chicken, hazelnut, lamb and kiwi, all foods known to cause allergic reactions. The timing of children’s reactions was consistent with an IgE-mediated process in that they began during or shortly after ingestion. The symptoms - angioedema in 12, hoarseness in 2, shortness of breath in 2, and anaphylactic shock in 1 - were also consistent with an IgE-mediated reaction. Recurrent diarrhea was observed in 9 children and caused failure
to thrive in one.
**** Switching from FK506 to cyclosporine A (CsA) in 8 of the children led to a sustained resolution of symptoms even after reintroduction of the suspected food allergen. The time frame and criteria used for the reintroduction of suspected foods were not provided. Total IgE level normalized and peripheral blood eosinophilia resolved in approximately 6 months in 3 children. Diarrhea resolved in 5 of the 9 affected children. Diminished sensitivity on skin testing was noted in the 3 children who were
skin tested a year later. The 4 children who remained on systemic FK506 because of chronic rejection did not fare as well. Total IgE levels and eosinophil counts remained elevated in these children and two experienced symptoms to new food allergens.*****
~~~~~~~~~~~~~~~~~~
EGO
Edging God Out
Lets please pray for no more EGO
I know that Aiden's doctors care about Aiden. I know that we are all human. I just am doing what I feel is my part to help. And it all boils down to PRAYER.
Thank you for checking this all out.
Check in soon for happy go lucky updates... I assure you the reseacrh will be minimal from here on.
XOXO
Lisa
Monday, July 17, 2006 12:08 AM CDT
Georgia was fun. Aiden and Mason had a blast. The clinic visit was less than thrilling. Infact I can feel my blood pressure rising just typing this. And I really am not kidding. Basically long story short: I went to Atlanta, I carried along with my two very new and recent articles on how prograf causes the “known phenominon of food allergies after transplant” this is now the 12th or so article that I have brought to their attention by myself. Along side THAT article comes with a research study on how switching the child from Prograf to cylcosporin has cured these children (8 kids) completely of their life threatening food allergies post liver transplant. I wasn’t really caring either way if they wanted to try the cyclo or not. I wasn't delusional thinking they would just cure him...
I was bringing HOPE and it was smashed.
I just wanted to give them the articles and allow THEM to decipher then and do what they will. But it is like square one. Minus one maybe? Suddenly what they KNEW 1 1/2 years ago when they TOOK Aiden OFF his prograf (see March journal entry of 2005) due to it causing life threatening food allergies… now suddenly certain members of our team are saying NO. No it isn’t valid it isn’t caused by the prograf. Bla bla bla….. Huh?? HUH HUH HUH?? OK so…. Then why did they believe it last year? And now with even more evidence are they so opposed?
Basically I am so frusterated. They didn’t want to try to cylco.. NOT because of rejection issues.. but because of the cosmetic side effects it has. COSMETIC. Like I care, if it made him grow an extra arm and he was SAFE I would be thrilled. OK SO HERE IS MY GRIPE: They don’t yet, after 17 anaphylaxises, daily hives for 2 ½ years, and tens of tens of emails regarding our concern, GET just HOW BAD Aiden’s allergies are. Ummm did I mention that when he was sleeping he went into anaphylaxis? Did I mention he can’t go to school? Did I mention that can’t eat out, or have his friend’s birthday cake. That he can’t go to baseball games with Daddy cause of the peanuts. The circus. When we travel we have to lug bags of food. When he walks into Target he COVERS from head to toe into hives from the popcorn being popped with butter. (don’t’ believe me? Ask Karen!) But alas.. you read my site you know my kid. You know how bad it has been. How many times he has nearly died from a TOUCH of cheese or a lollypop. So, cosmetic effects: him getting a little hairy, not exactly a big deal to me.
There is yet even another aspect of the visit that makes me so stressed and nearly tearful I am just choosing not to type it here. Basically, I am not happy about the visit. I am glad now that after stomping my feet they are finally gonna ‘look into’ a treatment (that my very intelligent immunolgist has recommended). “Looking into it” is probably just another way of saying, “shutting up the Mom”.
OK enough of that.
HOWEVER: We did have fun seeing Karen and Jen. 
(Jen has had 2 liver transplants and was transplanted the same week as Aiden. We met in ICU)
After the whole day with Karen and Jen, Aiden said, “Umm Miss Karen, where is that girl? You know.. the one that has been following you all day?” JEN! Oh Aiden you are so silly. Can’t remember a name for anything. SO I took some pictures of him at Clinic. Never thought to do that before. Nice to have it documented where he goes. Although it was not a great visit. We do have a lot of memories there. Some wonderful. 
I remember seeing this sign for the first time in my life and thinking: "We don't belong here! And now I forget to even look at the words... "
Standing next to "wheezy and queazy" as Haley called them
Mommy and Aiden at clinic
getting his "squeezy squeezy"
clowns are the best thing about the hospital. we love these volunteers!
Aiden is growing!
"How much does it say??!!!!"
waiting for the doctors... (at clinic in this room for 3 1/2 hours)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
After all said and done, we are doing the best we can. I know I expressed myself clearly at the clinic appointment. They understand how I feel. Well maybe not understand.. but received it. And so I can only put this in God's hands at this point and hope that wisdom and clarity are acheived.
I know that no matter what happens the GREATEST PHYSICIAN loves my child more than even I do. Hard to imagine that! But God never leaves us and he always is here.
Thanks for checking in. And if you are Stacy, or Tammy, or Ladonna, or Jill, or Angie, or any of the other moms whose child sufferes from severe food allergies after transplant, I love you guys, and soon we will get this all figured out.
XOXOXOX
Lisa
Friday, July 14, 2006 10:05 PM CDT
Looong story of the hospital trip will be posted when I can get the steam that keeps billowing out of my ears from blocking my view of the keyboard. Needless to say not pleased with the trip. 'nough said for now.
BUT SOME AMAZING WONDERFUL FABOULOUS NEWS:
My son's labs were NORMAL for the first time in 7 (seven) months. NORMAL
Chew on that for a while ....
NORMAL
Praise God!
(well not ALL numbers were normal... but NO red itchy pale freaky veiny high hemoglobin/hematocrit polycythemia-ish labs! WHOO HOO)
keep checking in.. update soon. and you wouldn't wanna miss this scene from "Days of the Transplant Life"
HUGS!
Proud and Happy/relieved Momma
Lisa
Ps/ HANNAH HAPPY 4th BIRTHDAY! WE LOVE YOU!
Monday, July 10, 2006 3:09 PM CDT
In prayer.
I visited my dear friend Cheryl's site. I have been hurting for her. I see her site, and read what I already knew. Her suffering is great. Her faith is tremendous. She is in need of prayer and love. Not just today, but everyday as long as she lives. She will always be a Mommy of 4 with one in Heaven and 3 on Earth. When people are greiving know... time doesn't heal, it just makes OTHERS forget. But the ones who are greiving never forget. And day 228 can be as painful as day 1. Have compassion for those who are hurting. Some silently because others think it "has been long enough" and others openly working as a minstry for others greiving, like Cheryl.
I am thinking of my friends.
The ones who lose their children. Cheryl and Bruce... I love you guys.
We lost another child to liver disease this week.
BEAUTIFUL Romina, you fought a couragous battle, and now are healed in Heaven. 4 years old forever. We prayed for you, and miss you.
PLEASE BE AN ORGAN DONOR. TELL PEOPLE ABOUT YOUR WISHES.
TOO MANY ARE GONE. 1 is to many.
Haley
Romina
Jayli
Sarah
Zane
Grace
Ava
Allison
Natalie
Brooke
Jacob
Brynne
all angels all missed deeply....
Right now I just completed working on a power point presentation I am doing at the MOM'S Club social on organ donation. Talking about these miracle children... always leaves me heavy hearted for the ones that only had healing in death. ETERNAL HEALING WITH CHRIST
Keep them in your prayers.
God bless... I will update wednesday after clinic visit. Aiden is with Nana now.. playing and living that gift he was given.
BE TISSUE, BLOOD, MARROW, and ORGAN DONORS.. please.
Love love you all
Lisa
ps/ Joey we miss you XOXO
Friday, July 7, 2006 11:37 AM CDT
Fourth of July was SO awesome! We hosted a little BBQ here with just a few friends. The kids had a blast.
We just did some 4th of July arts and crafts, ate some hotdogs and burgers, and set up the slip n slide. Of course Joey and David, (spencer's Daddy) had to rig the slip n slide so the kids had maximum slip-age. The placed it under the slide. The slide that was wet with water.... but heck that wasn't enough.. they grabbed the kids and swung them down it. 
sophie getting flung by both Daddy's
the kids think this was a GREAT idea!
Even Baby Ian loves it!
Chery, Haley's mom , once told me that every man has a 12 year old boy in them.. with Joey this is very true. (see previous journal entry for proof)
After the BBQ was done it was nap time for the babies and Mason as usual objected. Did I say as usual? So it FINALLY got dark enough to do the fireworks we got. Well Joey went with Aiden to get them... so back to the 12 year old boy thing.. he got more than we could ever need. It was so much fun. 
"I LOVE FIRE!... err umm FIREWORKS!"
"Uhh Daddy that was a LOUD one!"
This is the way I would like to spend every day of my life. Just enjoying the family/friends, the beautiful weather and living summer again through the eyes of a child.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I have the most exciting news ever! We are JOYOUSLY welcoming the arrival of Aiden and Mason's God-Brother.
Dale Joseph Kirchner
This beautiful little baby boy was born yesterday after an emergency C section on my dear friend Kitt. Kitt and Matt (Aiden and Mason's Godparents) are already the most beautiful parents and we just love you Baby Dale and can't wait to see you in person.
******ALso for all you Georgia folks: (Joey's family and friends) There will be a bone marrow drive this weekend in Warner Robins. Please check out Angel Jay's website for more information. This beautiful boy passed away after bravely battling cancer. Visit:
www.caringbridge.org/ga/jay
or CLICK here!! to be re-directed.
Have a wonderful week. Aiden Mason and I are all driving up to Perry this weekend. We wil be there on Sunday. The Clinic on Wednesday.
Much Love!
Lisa
Monday, July 3, 2006 10:11 AM CDT
Happy 4th of July! (baby Mason's very first Fourth of July)
Joey decided last friday that Aiden needed the "offical" T ball gear, aluminum bat and all. So in 96 degree weather he gets Aiden on his wool socks (official) and his thick wrist bands (official) and batting gloves (official) and might I add Joey made sure Aiden had BOTH gloves since he throws righty but hits lefty. So needless to say the official balls and Tball bag (bigger than the child) was also purchased. 
"Lisa, Aiden crowds the plate.. you can tell he will be a power hitter".... Great Joey. great.
So my four year old.. whom is NOT actuall IN T ball.. is playing on his own team in the back yard with Daddy. Aiden thinks Joey is the best thing ever. I always used to complain he wasn't a momma's boy, but now I just love the fact he has such a strong relationship with Daddy. Even if Joey could be featured on A&E's "Sport's Mom's and Dad's" and Oprah. But it is all love. Love in the form of Baseball, high fives, and "ata boys"... love testosterone style. 
One day I will be in the stands with my fog horn, and pots and pans, (yes I am sure the little league people will love the crazed parents of Aiden Hawk).. until then, I sit in the yard on my lawn chair hooting and hollering with every hit. 
Summer is here and life is good.
ENJOY THE FOURTH! God Bless America and all the men and women who have fought to keep it the great country it is!
Love,
The Hawk Family
Wednesday, June 28, 2006 7:28 AM CDT
I made him a milk free, egg free, soy free, PIZZA a few nights ago, and the reaction I got from all three of us (even the dog was excited..although Mason was not too moved) was better than I imagined! Aiden helped me make it When I said, "would you like Mommy to make you a special pizza that you can eat?" He looked at me like I was crazy. Then he said, "with no cheese?" And I said, "it would be TOTALLY safe" He jumped up and down and screamed and yelled "I AM A PIZZA EATER!!"
SO here are some shots of my pizza eater
"Thank you God for Mommy making special pizza"
"Everyone is excited, and I get to chew this toy?"
I LOVE PIZZA!
"Bark bark.. I love pizza TOO!" says Rolex
SO the best part of the night, (and let me tell you I felt like Super mommy) was when I was walking around the corner of the dining area Joey was standing behind the wall. He grabbed my shoulders and just hugged me SO tight. He just kept thanking me over and over, I knew it ment SO much to him too. I never knew how much of a toll it took on Daddy too, but it does take a toll on all of us. All the "No you can't have that..." just sucks sometimes.
ANyway, things are really calm and good here at the Hawk House. Thanks for checking in on us! Have a GREAT day/ week!
Hugs your family!
Luigi.. err I mean Lisa
Monday, June 26, 2006 8:33 AM CDT
Memory Lane:
http://www.sptimes.com/2004/04/28/Neighborhoodtimes/After_life_saving_tra.shtml
I ran across this the other day I couldn't get over it! It feels like a million years ago when this was in the paper. I just wanted to share for the new friends we have gained along the way... Enjoy! (how was he EVER THAT small?? OH my he has grown SO much!)
Joey,
Did I ever tell you how wonderful you are? I need to tell you that today. I love you sweet husband. You are my rock. Thank you for the hugs and the kisses, and the way you make me feel secure. I needed that this weekend. I love you.
I will leave for Atlanta on the 10th... Not today, just wanted to let you know of the plan change!
God bless!! and HUG your children today!
(even if they are stinkers that push their best friend off the trampoline, then crawl over their crying body to jump freely and with no one in the way)... oh I am a proud mother
Friday, June 23, 2006 10:45 AM CDT
If you live locally and would like to join the LOCAL chapter (or just learn more) of The Haley Vincent Foundation 501(c)3
www.thehaleyvincentfoundation.com
We will be having our first local meeting soon. We will be getting ready to discuss Miracle Mail drives, a fun big fundraisor (don't want to miss this!), and other ways to help chronically ill or terminal children.
Contact me if you have ANY questions at RolexH@aol.com make sure you put Miracle Mail or Caring bridge or something that would allow me to recognize you in the email title.. (You know don't want to confuse it with all the "fan mail" haha just kidding.)
Hope everyone has a beautiful weekend! We plan on doing some bowling, swimming, busch Garden-ing (this is not gardening in bushes by the way), or something very exciting. To kick off the "LEAVING DEPRESION BEHIND" state of mind, I am in. :-D
OK seriously please check out the foundation's site, and email me for ANY questions! We have some very exciting things ahead, and I promise to not bore you with the latest personal drama of the Hawk house... this will be entirely about helping the children.
God Bless!
Hug you children today!
Lisa
tuesday and wednesday updates
So we have wonderful news! Found out yesterday that my dad's pathology came back that the cancer was contained to the bladder. No spread to the kidneys. I can't even express the relief we feel. Dad isn't going to start therapy JUSt yet, they want to do a recheck and see if any grow back in the next week. It is very fast growing! Then therapy starts, and they are adding interferon in the bladder as well. So keep praying! I know he will whip this and we will have many more years left with him!
I went to the pediatrician yesterday with Aiden and Mason. Mason is such a noodle. 17 lbs 6 ounces at 9 months old. BUT he is 30 inches! Long and skinny. My pediatrician is once again not phased by the fact he can't really sit up all that well yet. She said it is because of that Loooong torso. But he is progressing just fine. YAY! SO ironic (yet I am sure there is some sort of lesson God has for us) that he is developmentally so much behind where Aiden was, my sick child. I guess I had it in my head that my healthy one would be all these things Aiden couldn't. Like fat and rolly polly. With all those creases and chins. Nope. God said, I made Mason JUST how I wanted him. Skinny like the first one, but Healthy as can be. YAY! I need to chew on that for a little while. It sure is interesting when I "expect" things from God how He manages to just show me a different path. But Praise God for Mason's health! I love my noodle. 
SO we had a 2 hour visit with the pediatrician. Mostly talking about Aiden. We are hoping what ever is causing his bone marrow to over produce will subside on it's own. Just wait and see. Although, I will be making a trip to GA next week, to see the team. Wednesday is clinic. We shall be there.
So the pediatrician and I were commenting on his supression level. He is 3 1/2 years out and still tripple supressed. And in high doses. It works for Aiden. And with his history of rejection, it makes sense. In any case Aiden's pediatrician and I were discussing how well he has done, and how in the grand scheme of things, he is an incrediable SUCsESS. She then made a comment, "I think it also has to do with the fact he is relatively secluded." Which is a segway into my next group of photos. Well, true he doesn't go to school, and won't (due to FOOD allergies only) but secluded... nahhh.. not my kid.
Here is Aiden with Spencer.. yes boys DO play dress up!
ok the next one is hilarous to me.. They are in full attack mode. ON the way to run over something and they get a Bob the Builder hat stuck under the jeep... "WHAT IS THAT??"
TURE LOVE... a GIRL that loves Thomas the tank engine??? Here is sophie and Aiden
you could here them from the other room:
"thomas thomas! I am stuck on the bridge!" .."I am coming Lady!" choo chooo!
Mommy, seriously this is NO time for pictures! someone is PLAYING Thomas with me!
OK so anyway, things you can see are wonderful here. Aiden was speckled with a lovely red rash yesterday after hitting baseballs with Daddy. Bright red cheeks and I am assuming high hemoglobin. Bath time was not much better as he covered with hives and red blotches..
here is itchy picture of him at his grandparents house. His simply laid his face n Grandpa's chair and .... his fave swelled up and got hives everywhere.
Ps/and so you don't think I am a total freak, (too late?) when I took these pictures I told him I was taking a picture of the drawing in his hand... so he wasn't aware that it was of his face. just wanted to add that... 
Well anyway.. no real point to this update rather than sharing all the great pics! Life is good, and we are blessed. Give your kids a hug today!!
And I could NOT delete Joey's update. Let me imortalize it one more day. haha love you joey!! XOXOX
Being as it is Father’s Day Week end, I thought I (JOEY) would contribute a bit to the journal.
Our week end was spent getting caught up on things around the house, and celebrating Father’s day on Sunday. The kids made their own cards and they presented me with a nice picture frame to put on my desk at work.
Aiden continues to still have hives, and weird skin rashes, and with his labs being still out of whack, we have to decided to go back to Atlanta for more testing. I will have to stay home and work, so my selfless wife will take both kids up to Georgia. My parents should be able to help with Mason while Lisa takes Aiden on to Atlanta. I hope she is able to return with some answers.
I have promised Aiden that this upcoming week end I will take him bowling. It seems that this is a new and exciting hobby for him. So I will teach him everything that I know. (The lesson should not take long in that I can barely break 100 myself.) I look forward to spending time with the family during this upcoming week to try and make up for not going on the trip with them to Atlanta.
That’s all I have for tonight. Mr. Tom (Lisa’s Dad) has had his bladder surgery and is recovering. He is waiting on the pathology reports and treatments. He is in good spirits, and is ready to do what ever God has in store for him so keep him in your prayers
Joey
Saturday, June 17, 2006 1:21 PM CDT
As promised!
one looking eager.. the other his usual
Nice shoes babe
JUMPING FOR JOY!
love,
"the loud ones on lane 3"
Friday, June 16, 2006 11:28 AM CDT
Bad day for my daddy. (Lisa's Dad)
Went excitedly to his oncologist and found out his bladder cancer is way worse. Spread to three spots and is a Stage three and Highest grade. Immediate reaction, was to be sick to my stomach. My dad, who is a spiritual mentor of our extended family, and just a precious man of God is feeling GREAT and said, "the surgery God will walk me through, but having to wait 3 hous to drink my morning coffee.. that will need prayers". I get my humor from him, and he is just a real hero of a Dad. The kind I was blessed to find in my own husband.
Please pray for healing for my Dad, and a quick resolution with surgery and treatment.
Also got labs today: Here is his hemoglobin:
Hemoglobin *14 H 10.2- 12.7 normal range
Hematocrit *40.5 H 31.9 - 37.8 normal range
I guess hematology will get a copy. My pediatrician will be pulling out hair. We will redraw next week.
Eosinophils are very very high too.. hivey little turkey. We are upping the prednisone for the week and getting this before it turns worse. Yay for mood swings and midnight snacks LOL...
Pics coming soon!! Bowling and of him and his brother!! YAY
Prayers for Grandpa!
Love
Lisa
Wednesday, June 14, 2006 1:04 PM CDT
We went to the hematologist! He was a nice man, I liked him right away. Good with Aiden. They did a cbc in the office, his hemoglobin and RBC were slightly elevated above normal. His platelets were up from “Aiden’s normal” but in normal range. They basically said, keep drawing labs, IF it something to worry about it won’t go away, and if it persists to come back for more invasive studies. We will also check is IgA and immunoglobulins again, because the IgA marker is high as well. ??? At this point I think we are just watching. Which was the second best outcome I had hoped for.
(Ideally, I wanted: “oh here, let me do a fancy shmancy blood test and we will tell you what is going on… oh look the fancy shancy tests says ‘don’t worry!’” but that didn’t happen. So outcome #2 was great. “hmm it isn’t normal.. but it isn’t THAT Abnormal….lets wait and see” good enough for me!
I have to be honest I was so moved by being in the hematology/oncology office I prayed aloud in the exam room. Just as plain as day in my regular voice. I prayed for these families that get such bad news there. I prayed for the kids who were there, getting infusions. Just being there… I prayed for them.
Aiden looked at me as if I had really lost my mind this time.. “what are you saying mommy!”
I told him “ I am praying for the other children.”
He asked me “WHO? Where are they?”
And I said, “lots of them Aiden. I am just praying for ALL of them”
I guess that was ok to him, cause he just said “Ok mommy.. Amen.”
I was chatting with my friend, Tanner’s mom, and when we said goodbye, I just said, how “blessed we were”… “Blessed because we KNOW we are blessed”. Does that make sense? I am blessed because I KNOW BOTH my son’s are gifts from God. Blessings from Him! I am blessed because I am AWARE of this every day. That I am pretty darned good at never taking either child for granted. A lot of us parent’s of chronic kids (I like that term better than ‘sick kids’) are just blessed to KNOW what we have. Gifts! IN all shapes and sizes.
OK so anyway.. Hematology was very good, we will get labs in the morning. And it is safe to say that Aiden’s “abdominal migraines” are conatigious! Haha.. (Tounge planted firmly in cheek) I was sick with the same “mystery symptoms” as Aiden. Miracle of miracles.. it seems to be JUST a virus. Infact he spread the good cheer to many of his play friends and other family. Uhh thanks for the million dollar nuerology consult, but abdominal migranes just ended up being the “pukes” TRUST me. I know. YUCK!
So anyway.. I am taking Aiden and Mason bowling in just a moment. I have no idea why I am doing this all alone, with my two darlings.. but I feel like bowling with Aiden and experiencing something new today. Something fun
Please pray for Jacob’s family as he earned his wings this weekend. www.caringbridge.org/fl/jacob
Blessings!
Go hug your family today!
Lisa
Sunday, June 11, 2006 12:57 AM CDT
Just babbling, and a bunch of cute pics!!
Normally roller coasters are fun. I love the ups and especially the downs. The comaprison of illness (or heck life for that matter) to a roller coaster just doesn't really do it justice. After all I pay to ride roller coasters, and in illness we have no choice. With roller coasters we are buckled in securily with out really every having any fear of falling. With illness.. I am insecure and fears flood my mind when I least expect it. The ups are full of anticipation of the exciting "downs" but in illness the ups.. ARE the excitement, and the down... well, I could just do with out all together.
But since I love cliches... I will say, that we are riding a roller coaster. This roller coaster has been pretty spectacular, but we really need to speak to the engineers who designed it and let them know that there are some spots that are very uncomfortable, and honeslty down right scary. There are even parts I can't tell if I am upside down or right side up. But all in all, I would ride this ride over and over again. Relying on my faith, that it does end well. That lessons are learned and that I won't upchuck the cotton candy I scarfed downed before I got on.
Joey and I celebrated our 5 year anniversary friday. It was pretty much a perfect replica of our 5 year marriage. It started out with high expecations, but quickly Aiden covered from head to toe in hives (eating NOTHING), that includes hairline, and fingers. We gave him benedryl at dinner, (sonny BBQ yet again) and he fell asleep in the car on the way to mini golfing. We managed to get lost, Mason pukes all over the car seat cause he was crying so hard, and once we decide to throw in the towel and just go home, Aiden hears us and wakes from his sleep hysterical begging to go to golf. SO after dirivng 1 hour cause we got lost, we make it to golf, where we did indeed have the BEST time!
So the theme for the night was the scenic tour, with some scary moments.... buy we still ended back at a very happy place. Just like our last 5 years.
So here are some great pics of us golfing, Joey about drove me crazy the whole night (along with everyone behind us in line) showing Aiden's how to swivle his hips and grip the club. Geesh.. he is FOUR. LOL
Aiden had the BEST time! It was awesome just seeing him have so much fun! Mason of course was a wonderful little blob cause he was in the snuggly on front of me. His perfect world, being held all night. (someone say spoiled?? and proud of it!)
here are some from the hospital/stone mountain!\
Finally! On the train!! YAY
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Daddy and the boys watching the "doggie circus" Aiden was getting a little tired here
But he got jazzed up playing in this fountain that spit water at him.
Here are my three favorite people in the world. This was sunday when we all just wanted to leave
THANKS BECCA, JAY, AND NATALIE for the balloons!!
breakfast in bed for my prince (ps that actually could be breakfast lunch OR dinner cause that is all he ate the whole time LOL)
here he was reading... Thomas. Wow what a shock :P Even when he felt sick, Aiden can always muster a smile. I love you Aiden!
Last night Aiden concerned me a tad cause he had a low grade fever for no reason, and had again hives in weird places. This time they were IN HIS EAR! all on the lobe, and in the hole. It was terrible. He just kept digging which just made it worse. I put him in the bath and he had hives all over his arms. I began to wash him and he looked at me and said, "Why mommy?" I assumed he wanted to know why I was washing his hands AGAIN, so I told him, "I need to wash you hands cause of the hives" and he looked at me in a way he never has before and said, "NO MOMMY... WHY do I GET hives? " I had no answer. I don't know, baby. I don't know. No food. nothing to eat. Nothing new in the house. Just because. But hey there are much worse things than that. He still had a blast playing Thomas on the floor with me, hives and all.
Monday Morning we will be getting labs, and also this week we will be seeing the hematologist. I hope we get some very easy and wonderful answers! With last nights fever.. I am just thinking.. "virus virus virus" that would be great.
HUGS!
Friday, June 9, 2006 7:25 AM CDT
Hello everyone! Things have been so wonderful here. Aiden has had a great week. He hasn't been a bit pale since we came home, and he has been just SO happy. It is so sweet to watch. Yesterday we had a few of his friends over and he was just glowing. He had the best time playing for hours with his friends. They played slip n slide, and in the room, and trains, and swings, and he just wanted to do everything. I had the best day just watching him. To see him happy made me SOOO happy!
We got an appointment with hematology next week. As it sunk in who we are seeing, I am a tad more nervous than even yesterday. But don't expect anything except a good explanation for his high counts.
I had many people ask me why we didn't "just" see the hematolgist in Atlanta, and I wanted to explain what exactly we DID do in atlanta. (since it seems slightly confusing to all of us lol) While in Atlanta they had a priority of symptoms that they were investigating. It was Aiden falling unconsious. They felt they needed to get that figured out QUICK in case it was something very serious and and something that could cause harm quickly. They put him through a million tests to rule out any type of "liver related" complication. This included nuerology (*the most obvious possiblity) as well as cardiology. They did sleep studies, amino acid studies, tons of test. UA's and just looked everywhere. In the MEAN time Aiden has had this blood count issue as well. They were hoping that maybe Aiden wasn't getting enough O2 in his system at some point in the day (called hypoxia) and that made him want to increase his hemoglobin (his oxygen carrying cells) to compensate. Soooooo they DID actually search for the obvious reasons Aiden's is doing what he is doing. When they concluded all was normal. (thank the Lord) Then they suggested that the experts in the field take over. Hemoatology. There was NO question in MY mind that after 11 days of this drama we would GO HOME and do that here. A whole new work up that would take who knows how long. After all I DO have another child, that needs to be taken care of, and we DO live in Florida. hahaha. (although some doctors feel we can just pick up at any point and have no consequenses) SOoooooo The transplant team told us it was no problem to see a hematologist in St. Pete (considering I have heard at least THEY are wonderful at All childrens). And that is where we are.
Joey has a job, Mason has to be watched, Aiden hates the hospital in Atlanta, and I just want to be HOME. (and did I mention it is very very expensive being in Atlanta?) So we are home seeing hematology. It SHOULD be just another RULE OUT visit. I am praying we are having a med side effect. Or something viral, or immunological or something. So hematology hopefully is another rule out.
Anyway.. I do realize it is all very confusing to read my updates. They pretty much lack in the medical info but go on and on and on about emotions. (poor Joey has to live like this) SO I wanted to be more thorough and explain what is happening. Make sense of this maybe also for my OWN benefit.
I wanted also to thank my friends for nurturing me as well. Besides that Cheryl came to visit me and support me so selflessly ( I honestly can't imagine what this cost her emotionally) I also have the best local friends as well. Last night was fun at dinner, and thanks for letting me droll on and on. Debbie downer has LEFT the building. lol
Prayer request:
Please pray for Aiden to just recover and be back to normal. Pray for healing or whatever it takes to just eliminate any cause of worry or concern. I KNOW that prayer works and I have seen the healing he has had in the past, and I truly believe that so many praying has made such a difference. I am not saying that God isn't sovereign, but it does in my opinion make our lives easier as we are USED for God's perfect will. I feel that yesterday's joy was a result in prayer. I know that my marriage and it's strength has been in a result in prayer. I do not think.. 'if you pray hard enough you are healed and life is fine,' because I know so many people who have prayed HARD.. begged and pleaded but had no EARTHLY healing for thier children. Instead they were made perfect in the sight of the Lord, in Heaven. So I ask you to pray for PEACE, and JOY. For WISDOM and GRACE. These things I have felt and do feel still. Pray for Joey right now also. Things have been difficult for him as well.
Well today is my 5 year wedding anniversary. We are going on a family date tonight. Minature Golf and to the beach.
thanks for checking in on us.
Love to you.
Lisa
Tuesday, June 6, 2006 6:24 AM CDT
WE ARE HOME! (prepare yourself for an emotional/ sleep deprived update LOL)
Oh my gosh... we finally got discharged early yesterday, and we decided to go for broke (or exhaustion) and headed to Stone Mountain. It was SOOO beautiful. We immediatly went to the train we have been promising him, and he was so excited. He got very tired on the train, and nearly fell asleep. I sat on the bench in front of him, and it was all I could do from crying everytime I would turn around to see the wonder on his face. (crying from joy, but also sadness ater reviewing all he had been through during the week) He was pretty weak, which had Joey and I worried, and he was so pale. (although he is the oppisite of anemic) He nestled in Daddy's arms and he just looked at the mountain with this tired little smile. The played "Dinah blow you horn" and he just looked at me, knowing I would sing along and make him laugh. His smile was like a huge glass of water in a dry baren desert.
We played at Stone Mountain for only a short time, but we vouged to him we would come back and camp there soon. I kept telling him, "Aiden you were SO brave, and SO good at the hospital." and he would get sad, and tell me he wasn't.
We got home last night around 1:00AM. And I know this sounds like I am being dramatic, but I don't think I have ever been happier to lay in a real bed in my life! I think of this admission, and while admittedly it was a very difficult process for him, I sit in awe of the old me who used to do this for 200 days out of the year. Even now I look back on the past few years and think... "How have we done this? And how have we managed to stay so happy?"... and I know it is God. Only God.
Aiden had 37 pokes in 11 days. That includes 5 IV's and a ton of blood work. Often drawing on him two times a day. He had EEG, flash studies, CR monitors, Sleep study (hands down the worst), echo, EKG, MRI and general anesthesia. The had him pee in cups, take his vomit and put it in sample cups, (this HUMILIATED HIM) and stand around all day talking about him like he wasn't there. They said things like, "complex" and "difficult" he listened to every word. Being 4 years old in the hospital is very new for this family. So needless to say, Stone Mountain was something we NEEDED to do, and I know it helped a lot.
One night, we sat there and played Bingo down stairs. As we piled into the room (about 75 people) Aiden wanted to sit in the front. With every child who came in, he would say to me in REAL suprise, "Mommy! They have a straw (IV) JUST LIKE ME!" and he would smile. He leaned into a sweet little boy next to us, a cancer warrior, and asked him why his "tubes" went under his shirt. The boy, lifted his shirt and showed Aiden his port on his chest. Aiden wanted to know if it hurt. And the boy said, yes. Yes. child to child... patient to patient. It hurt. We played Bingo,( a rigged Bingo that allowed every child to win a prize). But Aiden never caught on to that, and was so suprised when he won. He ran to the prize table and got his prize.
I sat there and even after 4 years of being a parent of a transplant patient, I thought to myself, "I don't belong here. How did we get here?" I kept trying to suck the tiny little tear that wanted to fall so bad, back into my eyes, but it persisted and along with that tear came more. The mom of the beautiful little boy smiled at me and patted my hand. Her eyes were wet too. I just looked at her and said, "You know I can't believe this is our life sometimes, it just suprises me every time." I felt bad for saying it to her. Cause she was surely not in the denial I was. Her son was bald and small, she had been a hospital mom for a long time too. But to my relief she looked at me and said, "sometimes it seems like a dream. Like I don't belong here." I was shocked. She said EXACTLY what I was thinking. She TOTALLY knew what I was thinking. It was a huge moment for me cause I always to say to people, that I never think of Aiden as sick. I am feel like he is so "healthy". But it seems after talking to this mom, she does it too. Even with the chemo and the meds, she sees him as normal. Like they don't belong in the hospital as chronic children. I guess even today I sometimes have that fantasy in my head, "it happens to other people" but it doesn't. It happens to annyone. I can't tell you how comforting it was to see that I wasn't alone in my thoughts.
We both shared a tear together, and then the strangest thing happened, we both began to smile and immediatly tell each other how thankful we were it wasn't "so bad". And that "it could be worse". We ment it. From the bottom of our hearts, we knew it could be worse. And for others it is. So even though I am sad sometimes that Aiden has ever been down this road, I am joyful in my everyday, that our road is with such ease (compared to..). I can not lie to my heart, Life is good. And we are happy. Aiden is happy, so we are happy.
Thank you for praying, please keep him in your prayers, while we try to find some answers. We already have spoken to hematology in Fl and my pediatrician has some labs we need to get drawn. I will give him a day before we go back to draw more labs.
"..weeping may endure for a night, but JOY cometh in the morning." (Ps 30.4-5)
YAYYYY for being home! Thanks for my friends, and family who support us. we are home, and I am just so happy.
SMILING AND JOYUL,
Lisa
Sunday, June 4, 2006 9:28 AM CDT
6:45pm Update:
we are still here in the hospital. No discharge. I will let you know if anything happens tonight (nothing will) but other wise. We are a sad bunch wanting out of here. It has officially been 1 week in Atlanta. poo poo yuck yuck poo. :D (ahhh nothing like immature potty talk to make me feel better haha)
OK also check out Angel Haley's site Not that I am narcistic and love to read about my kid, (which you know is true) BUT you can see why this woman inspires me SO much. Her grace, and love, and friendship blesses me to the core.
Anyway... still working on my Merriness
(Proverbs 17:22-
A merry heart doeth good like a medicine: but a broken spirit drieth the bones)
But having my family here with me has been good for the soul. I hope we can go home soon and bask in my clean home.
Love you guys and MISS YOU!
Ps/ just met two liver kids in a row with severe anaphylatic food allergies... (the wheels in my head keep on turning.. la la la la)
9:30 AM update:
well they are doing a liver transplant right now, please pray for the families involved. In the mean time we just sit and wait to speak to someone about discharge.
His labs are better (and should be with 2 days of IV fluids) and he feels better as well. Still pale, still puzzling us.
The nuerologist came in a few minutes ago and was in the room for about 1 minute.
"I think there is nothing nuerological going on."
the end.
That was probably at least a $250 consultation. LOL But in the mean time he was totally in agreements with me (us mom's like that) that it was way too soon for the abdominal migraine diagnosis. Puking twice in 8 days doesn't really make sense to diagnose him with a new chronic condition. And I know if these docs give him a label and they won't drop it for the rest of his life.
In anycase I just want out of here! I am tense and snappy and just want to go take the kid to Stone Mountain. Now it seems we will get discharged late this evening just in enough time to not be able to go. Then in the morning we will have to drive back. BUt believe me, we still will go ride that train even if it is the only thing we can do before we leave town.
at home the follow up is this:
hematology
and now nurition (he has a low calcium, protien and his albumin has been low all week )
I am glad he feels better, and although I want him to just make all these crazy things go totally away, I just would like it to go away long enough to get home. haha...
Hopefully the next update will say: Going home!
thanks for checking on us. Please keep Aiden in your prayers as we still have no idea what is going on with him. I ask for you to pray for all his doctors but now especially the ones in florida who will be continueing on is care. Pray for WISDOM, and for open minded-ness.
God bless!
Proverbs 17:22-
A merry heart doeth good like a medicine: but a broken spirit drieth the bones
Merrily (well at least my best effort),
Lisa!
Saturday, June 3, 2006 8:30 AM CDT
Just remembered today is the 4 year anniversary to Aiden's diagnosis. The day he had his Kasai surgery. Happy anniversary big boy. 4 years and you are a hero and a fighter.
OK so I have been talking about his skin, and I wanted to put a few pictures here while I have this "time" on my hands. The flash really mutes the color out. IN person it is much more contrast-y (yes a new word) I tried to take the pictures with out flash but my digitial camera makes it blurr. Anyway, this is the best I have of the skin. This way you can see what I mean, although many times I it is much worse. WEIRD
Today's update:
Aiden has water diahrea, no more vommitting though. He is getting perkier and sassy again. They have him on fluids and some electrolytes. And yes... we are STILL watching Sponge Bob. (good thing I like it.. kind of like chinese water torture when we watch Thomas over and over and over)
DADDY and Mason are at Joey's mom's right now. Tanking up on jar peaches and a ba ba. Aiden is soo excited to see his baby brother. I have a picture in a frame of Mason here right next to his bed, and he makes me point in in the direction he is sitting. A few minutes ago he was on the toilet (sorry too much info) and he made me face the photo to him. He sat there talking, "May May.. do you want a BA BA? Big Brother loves you"
Well, I will update soon. Lots of love
"For I know the plans I have for you," says the Lord. "Plans to prosper and not to harm you, plans for a hope and a future." Jeremiah 29:11
Still Praying,
Lisa
Friday, June 2, 2006 3:20 PM CDT
7:00pm update
change of plans. We will stay in the hospital
Note to self: Aiden's doesn't fake it.
He began vommitting again. So far 9 times. Also diahrea. He is SOO pale. Which is so weird cause his labs are sooo high he should be all red with red ruby lips and cheeks. He is not feeling well. Just like last week. So please pray for him. I pray we can get to the bottom of this.
they are about to run some metabolic amino acid tests on him. Nuerology said major long shot. Although the migrane thing is really becoming a big thought. He has NO head ache though. (my kid would be the ONE that has no headche with his migranes.) They said something about abdominal migranes. They are also running electrolytes and labs again. Poor sweetie thought he was done. He was so hysterical when they told him they were going to flush his IV that he kicked the nurse.
The doctor is getting him fluids, and anti emetic? Zofran. I used that in pregnancy, it works.
OK soooo It seems we are here for some more days. Joey is driving up with my little meatball Mason and stay at the RMDH. Aiden is begging for Daddy and I need both of them.
To Michelle and Lynne and all the MOM's CLUB. I am just in tears thinking that when we get home I won't have to worry about anything. THANK YOU.(ps. and now if Joey takes the baby out of there it will stay clean while I am gone. :P )
Love you ALL.
I will update very soon.
Lisa
earlier update:
ohhh that is annoying. I just typed a long update and bam it is gone. arghhh
SO we were leaving to get discharged and he beigns to cry and rub his eyes and tell us his is sick. He continues on by falling asleep on my while the nurse was looking at him. Geesh. They look concerned and say he looks really pale. (uhhh kind of weird for a child who has such a high hemoglobin). So we let him sleep and he woke up crying and said he was sick. He said he was hurting.
Here we sit. I am thinking he is scared to get the IV out, well becuase he just said, "Mommy I don't want to get the straw out. It will hurt" (I am real intuned :D) So I hope he was just pooped from the long week and is just emotional and sleepy. The nurses have already paged the transplant team even though I am hoping he will perk up before the come.
IF he perks up and gets to leave, this is our plan:
Once home we will see a hematologist. They can help us investigate why his hemoglobgin, hematocrit, platelets, RBC are high. (polycythemia) The transplant team said that aiden is just a complex child that doesn't fit in the box. But they had to investigate ALL "in the box" things they could just to make sure there wasn't something big they were missing. (for this I am SO greatful) he came back negative and normal to every test. All except his labs. SO they want the blood docs to get involved, and see if they have any input.
IN the mean time we were planning on being discharged today (papers almost signed) . If we go home, we will go to the Ronald Mcdonald house. Then have a fun day in Atlanta and fly home tomarrow. Stone Mountain and a real steam engine tomarow!( his choice. He wanted to do that vs going home first)
So hopfully the next update will be from the RMDH!
ps thanks to Becca, Jason and Natalie for the awesome book and balloons! ANd the the MOMS club for cleaning my house!! WHOOO HOOO I am soo thankful. A HUGE relief so I can come home and sleep.
I love you guys so much, and am humbled and honored to have such good friends who stand by our family in times where we just need help keeping it all together.
XOXOX
Lisa
Thursday, June 1, 2006 3:52 PM CDT
“He doesn’t LOOK sick”
Ohhh if I only had a penny. I think I might make a memoir called “he doesn’t look sick” and tell the good ole story of liver transplant children. It seems to be the song that plays on the liver transplant floor here in Egleston. It is the same thing I hear at home.. and praise be to God it is true that he doesn’t LOOK sick. None of them look THAT sick… well unless they are yellow. THEN the saying is: “He doesn’t LOOK sick, except he has a tan”……..
Well last night was probably the most torturous night for Aiden ever. The sleep study. I never thought he would react that way. He went bizerk. It was so horrible to see him thrash and scream and beg people to stop. He has hit his limit. Anytime people come near him he wants to know "what are you going to do to me?" He is so nervous and stressed he is all over the place. He is happy and wild one minute the next hiding under his sheets cause a new person has walked in the room. Last night they had to put things all over his body and IN his nose. So the two things he hates more than anything.. Imaging, and his nose. (which all stem back to one thing.. his old ng tube.)
Anyway, I lost it. I was crying so hard while he was begging and screaming and gagging. I couldn't stop the tears. It was like someone put a little tube in my eyes that just poured out the tears. No need to blink, they just poured out. I didn’t even really make “cry face” the tears jus rolled out furiously. I was so sad!
I hear him screaming, "DONT HURT ME! DON'T TOUCH ME! GO AWAY! LEAVE ME ALONE! LET GO OF ME!" and they have to hold him down. I have never been held down while I screamed for someone to stop, but the closest memory I have to this brings me back to my childhood. I remember when my brothers would hold me down to tickle me. You know, all love and good intentions, but then I start to laugh so hard I think I might pee my pants (yes I DID just say that) and I would get scared. I wouldn’t be able to catch my breath. And I was more scared. I remember begging them to stop but that just kept them from stopping and making them tickle harder. I remember feeling angry and panicked. I remember thinking that I was scared, and helpless... and it was JUST tickling.
I saw Aiden’s eyes last night. Pure panic. He has hit his limit. He begged with all his heart to stop… and it never did till they were done. It hurt me to no end to watch… but worse it broke my heart to be one of the people that held him down. (you should see the report from the study: “Screaming and kicking were noted through out the procedure. The leg leads and the end title CO2 were not applied due to the patient level of agitation.” (at least it didn’t say “due to the mother’s hysterical fit..”
I am NO drama queen when it comes to Aiden. Infact, I am ususally pretty logical and know that all of this will come to an end soon and we will get home and we just cope. But as most of you are my friends from my support group that read this, you all know it doesn’t end here. They are transplant patients, they are the “healthiest sick kids you will ever meet”. And believe me… I am the first to admit he is “healthy” but friends who hear me say this do not be fooled… I say this from the perspective I have lived. The perspective of what we have seen and been through. The comparison between him and others who have it worse. Because after living some horrible nightmares… it becomes easy for me to call him healthy. Healthy=happy…. That at least in my mind is true. And he is a happy child, Praise God.
Being here has yet again humbled me to the core. We are just SOOO blessed! So blessed to have just this. JUST this to face. I am so greatful and thankful for the reminders I am given that everyday is a gift and every kiss should be cherished.
So anyway…. I have more and much better “update worthy” news.
The sleep study came to a dead end. He has no sleep disorder. Just a low HR when he sleeps, but his O2 is fine. It isn’t the easy little fix I hoped for. He had an MRI, MRA and MRV on his brain today. He is watching Spongebob season 1 recovering. He was so furious he woke up with yet another IV in his arm. Man he was mad. Coming out of anesthesia, he was kicking me and the nurses… the little fighter. The nurses joked he was a mean drunk. Lol I guess that is funny?
Well anyway, the echo, heart studies, ekgs, all are normal. The nuerologist would like to wash his hands of this whole thing as well. (although the nuerologist in St. Pete probably won’t agree) It seems like we will probably leave with no answer. But as his mommy, the “guilt o meter” has been emptied and I at least feel we made a huge attempt to figure Aiden out. I just have to concede with the fact we may have to have him “show” us more so we can fix him. Time may be his best friend, although I hope when/if whatever it is that is wrong with him reveals itself, it does so in an easy and simple way. Nothing too complicated. (definition of denial= Aiden not complicated)
And let me finish this update with yet more more amazing thing. Aiden had the most unexpected but most welcomed visitor. Haley’s mommy. Cheryl, my dear friend, drove the same 6 hour drive her and her sweet Haley used to drive only a year ago in hopes to make her better. Cheryl, came to see us, and support us. In her grief, she inspires me. It was too short of a visit for me, but so wonderful. To be able to see her sit across the familiar hospital pull-out couch, but to know how tragically things have changed, broke my heart. She told me that God laid it on her heart to come see us. She is so obedient to Him. She came and although it was heartbreaking and painful, it was the first of many trips she expects to make with the foundation. And hopefully, and prayerfully those trips will bring her peace and comfort knowing that they are helping others who need it through the foundation,
I love that family. God placed us together 4 years ago knowing that one of us would lose a child. But also knowing that our friendship would last through everything. I have been her support as much as I can, and she as always has been mine. So, I just had to share that. I will let her tell you her perspective of visiting us here. (link below to her site)
As she was getting ready to leave, we sat in the play room. Aiden never mentioned Haley the two days he was with Cheryl. (although he did make Cheryl climb under the sink cabinent, and I KNOW Haley was laughing up a storm in Heaven) well, right before we said goodbye. Aiden grabbed a play phone and said, “It is for you” and handed it to Cheryl. Cheryl (like any good mom) pretended it was spongebob. Aiden was obviously annoyed, and said, “NO! It is Haley. She wants to talk to you”.. I held my breath and my newly found tear tubes began to flow. And this is what she said,
“Haley it is mommy. I miss you. I love you. I hope you are having fun with Jesus in Heaven. Thank you for watching out for Aiden. I love you.”
Oh how that moment reminded me as a mother how blessed I was to have my baby there to tell the same thing to. Oh Cheryl…. You have taught me so much, I wish it was so different for you. I am sorry to you and your family. I love you for your selflessness.
Ps/ Finally but soooo importantly: I need to thank some people! Thank you so much to the MOMS club for sending Aiden the Thomas balloon he LOVED it. He was jumping on the bed screaming. It made his whole day. Thank you Michelle for the box of goodies for us. Thanks to Kelly, Karen, Frank, Shannon, Stacy Z., Katherine, Kitt, and everyone who has called and left messages to let me know you care. And that you are thinking of us. I know we are thinking of you. I can’t wait to be home, take the boy to the beach. Maybe Busch Gardens, and just kiss my husband and baby Mason.
Thank you for signing our guestbook and for just praying. Our family feels lifted by you. I will update soon and let you know what he plan is.
Lots of love,
Lisa
Wednesday, May 31, 2006 5:50 PM CDT
I only have a quick second to update the nurses are sooo sweet they are letting me use the "nurse computer" :D
Aiden is heading to a sleep study in a few minutes. He had a CR monitor on him all night respitory and breathing and heart rate or something... Anyway, his HR was in he 50's and he only had 12 respirations a minute. It seems my little turkey may be not getting enough oxygen in his blood and causing him to make more hemoglobin and RBC to carry blood to compensate. Oh and guess what? that would make him mottle all day. I am really hopeful and excited they were so smart and came up with this. It was his heaptolgist who thought that there was times in the day he wasn't getting enough O2 but we could clearly tell he was getting plenty duing play and awake time
Cardiology basically gave us the all clear, although they were sad they couldn't help. They wanted to help so much, but nueorlogy was less helpful and wanted to say he had "migranes" uhh no. You know the migranes that don't make your head hurt but do make you go unconsious?? exactly! So we basically are saying thanks but no thanks to that diagnosis.. lol.
Anyway.. nurses are staring at me and I am not a rule breaker... I will let you know what happens when my little sleeping angel wakes up.
Ps/ maybe the coughing and gagging he does every single night is really from no oxygen. That is the thought.
Lots of love!
Lisa
(a very hopeful mommy right now!)
Monday, May 29, 2006 9:07 AM CDT
Tuesday Update:
Well lasb are back.. the kidney and stomach sickness/headache whatever he had is history, but we are now in patient getting him figured out. he will be consulted by all the three grous I mentioned. Cardiology, nuerology, and immunolgy. He had a chest X ray this morning. It was normal. They were looking for an enlarged heart. His hemoglobin is still running pretty high abover normal, It is mainly the H and H that are high and the RBC.
I did find out the bone marrow biopsy is NOT happening, unless one of the three other people who are seeing him thnk so. BUT they are going to do some other whacky things. Blood gas study. (OUCH! blood from artery) Sleep apnea study. Oxygen study. They said he is not getting enough O2 through the system so that is why his hemoglobin is high and all the other things. ALSO that is why his skin looks weird cause his circulation is not great. But they suspect it may be happening in his sleep??
So we have and MRI of his brain tomarrow, he has lots of weird nuerology stuff includnig EEGs (again) and they are gonna try to figure him out.
I do have a very specific prayer request. His veins are already shot. His hands and arms and elbows and everything are bruised and his line that is from Florida is still in, but we may be loosing it. SO pray that the line either stays or at least it can stay till he is under anethesia for the MRI and we can find a better vein there. I am just not looking forward to him having another line put in if he is awake. Poor guy. So pray for good veins and a good line
Thanks so much for all the support! I am just always amazed at so many people who care and want to help. I can't wait to get him home. I am missing my baby sooo much. I just want to kiss my Mason too.
Thanks for the prayers. we love you
Lisa and Aiden
Ps/ Aiden has just fnished a tme out for throwing a wad of play dough in the face of his surgeon. nice.... Real nice. (and if it wasn't enough he figured his aim wasn't perfect enough so he shot him in the face a second time. And he KNEW he was gonna get in trouble but it was worth it!
Little Aiden has been sick. :( I just have a moment to update (he is sitting here reading a book while I am in the library and that will last all of 10 seconds lol)
He has been in and out of the ER since Thursday and finally (and appropriatly) admitted on Saturday night in St. Pete. They discharged the little traveler and we came to Atlanta. We are admitted here and I just learned they will be doing a lot of testing on him. I have to say even though I finally feel heard and listened to... I can't help wish we could just be home playing with Mason and Daddy.
Anyway.. when the doctor said to me this morning.. "I dont' want to overwhelm you will all the things we will be testing for.." I asume it means we will be here at least a few days.
Like I said before transplant patients don't need to be going unconsious for no reason. So hopefully we will get a reason. Now that we aren't out of sight and out of mind suddenly his weird veiny skin (mottled) is getting attention (hello!) and I am certian we will see cardiologist as well as nuerologist.
I think MRI of brain, video 2 day EEG and also echo, ekg and other things are in store.
Wow He is still reading!
SO ANyway, I want to say thank you to my friends, and to Kitt and everyone up in NC that just supported me so much. And to all of Aiden's friends who are praying. Thanks for the sweet voice mails.
Aiden is feeling pretty puny. Really isn't eating. (3 grapes for breakfast). He was actually admitted for "acute renal failure" his creat was so high! But with 36 hours of fluid being soaked into him, he is looking pretty good on that front. They said they will be interested in see what happens when he isn't so "tanked up".
Aiden has his Thomas's and I had only a second to catch the flight here so underwear and socks were forgotten. (for BOTH of us.. joy)
He is in room 464 at Egare joyfully watching Mason during the week. YAY... Mason has been swimming so much at their house, it has been a blessing they have bonded so much.
Anyway, pray for Aiden and all the children here.
My heart is especially sad for Haley's family. So many have already expressed their sadness to me, about that great loss. She has not been forgotten. And I love to see the beautiful photo of Haley and Aiden on the wall of Fame on the transplant floor.
OK so pray for this and that we get down to the bottom of Aiden. All his issues. We even are doing Ige's and Immunolglobulin testing.. Immunolgy is frothing to get their hands on him again. (roll eyes)
Love to you all!
Kisses and hugs from The Spa retreat at Egleston :P
ps/ he loves that book... time to go check it out. wow!
s and hugs from The Spa retreat at Egleston :P
ps/ he loves that book... time to go check it out. wow!
Sunday, May 21, 2006 8:30 AM CDT
Things are good here. Aiden hasn't had any more "episodes" seizures" "events" whatever. He has been fine. He does wake up in the morning red and rashy. It comes and goes in the day. It is worst when he is wet, or hot. But he feels good! We had a wonderful day at the park with his friends. It was just well needed for all of us. The weather has been phenominal. LOW HUMIDTY which is rare and weird here in FL, but I am loving it.
Aiden has had a revival in his Thomas obsession. He has been on his hands and knees playing Thomas with a new passion I haven't seen before. It is so amazing to watch. The conversations each train carries one with one another just makes me smile the biggest smile. It seems that Thomas and Emily (the green girl train) had a race. During that race Emily won and yelled that "THOMAS IS A LOSER!"..... well then Sir Toppam Hatt announced that saying "looser" was hurtful. So Emily got a time out and had to apologioze...And MEAN it.
I just sat at my computer listening to this elaborate play laughing to myself. What a JOY he has become. A naughty joy somtimes, but a joy.
Little Mason is about to be 8 months old. As you know that was how old my baby Aiden was when he finally had his liver transplant. I am in a funk. There is nothing I can do to make this a non emotional time for myself. I just am going to live it and be blessed that God is giving me an oppertunity to HEAL. When Aiden heading into surgery, and being sent back to more surgeries, you don't get time to really feel much. You just live it. Now I get time to heal. And it is a blessing.
I get to have Aiden kiss and play with his 8 month old baby brother, it is sureal. Both with thier white hair and big smiles. It is precious. I feel blessed.
Tuesday, May 16, 2006 3:10 PM CDT
We spent Mothers Day together, and it was just wonderful. Joey made me a really special card. It was his hand print, then Aiden's on top, and the tiny little Mason hand print on top of that. I was so touched. I know it was probably not easy to get Mason to coorperate. Joey pointed out it came with a ketchup stain and all on Aiden's hand print. Like a real authentic peice of art. So after taking my mom out for brunch, Joey and I packed the boys into the van and went to Busch Gardens. Aiden loves it there, and so do we! Like a mini vacation. Escaping for a moment.
Aiden rode his first big boy ride! Daddy and he rode the big log ride. I could see him waiting in that long line all nervous and bored. I kept waving at him. I know he loves the little train and stuff, but I was wondering if he would get up there and back out at the last minute. But Joey was brave.. hahaha... Just kidding hunny. In case you didnt' know, fact #1002 about Joey is that he hates rides! So he was a big boy with Aiden. They went down and splashed and were soaked. I missed it. I was too busy fiddling with my camera and watching every other person go down. Of course, it was one of the highlights of my day.. Mason slept in the stroller, and I just sat and people watched. Ahhhhhh... a good 1/2 hour of silence. It was heaven. here are some pictures of the day:
(me looking like the only one having fun.. after all it IS mother's day :-D )
Aiden climbing into the gorilla exhibit.. Joey winning Daddy of the Year award
Mason and Daddy on the train
Aiden standing with the "gorilla's in the mist"... he wasn't so sure about the mist. He thought it was smoke. Stop, Drop, and Roll????
Yesterday was Aiden's EEG. I was hoping it would be easy and smooth for him. He waited so perfectly in the hall. tip toed and was quiet cause another one was in session. We got in the room and they were too rushed. The one nurse just started immediatly grabbing him and putting him on the table. Geesh. Why couldn't you have just slowed down given him a chance? This isn't some kid that hasn't been around the block. He was scared. Show him stuff! Introduce yourself! Take 5 minutes... it would have changed everything.
OK moment to rant.
I know that people think 'well just hold them down get the things on them.. they will get over it'. BUT let me explain what happens to a chronically ill child. It goes into the memory bank. The file cabinent for the NEXT time. (cause there are always next times) All it takes is a moment to help break the chain of fear. "Yes Aiden, last time was scary you were at the hospital, but this doesn't hurt. Do you want to sit and think about it for a minute?" That is all it would have taken. He trusts people, but she grabbed his face. Nooooo don't grab the face. It isn't rocket science. I know they think the kids are like little Cattle, that one day he will be old enough to either forget, or get over it. But next week with his MRI it will be scarier. It will be worse than it needs to be, because she grabbed his face. If they would take the moment to just break the chain of fear... it would change them. Not only does it change the immediate experience, but the experience the child takes home with him. Like the nightmares, or how he feels about it. The daily fears.
When in the room there was a camera in the ceiling. We couldn't tell what it was. Aiden said, "Mommy what is that?" I told him I didn't know. He said, "I do. It is to make me dead. They are gonna make me dead.".... This isn't normal. Kids may talk about bugs dead. Or fish dead. But to talk about an something MAKING THEM dead. That is not the normal everyday 4 year old conversation. I assured him it was nothing. He wasn't assured. SOOO if you are a pediatric nurse and you are reading this, please just take the 5 minutes to introduce yourself to the child. Give them a moment, it can change SO much. (of course we normally have very good experiences and most nurses are experts at kids and their fears. But sometimes a burnt out one comes our way)
So anyway.. after they got the wires on and "plugged him in" he rested in Mommy's arms. 
They asked him to close his eyes, and he refused. He wasn't taking one eye off of them. Of course when it was all over, the nurse exictedly annouced she was off to LUNCH. SO THAT, was the big hurry. That is why we had to rush him through another procedure.
Aiden's skin has been red and blotchy. He is very itchy. When he sleeps even then, he itches. We are rechecking labs when we do the MRI.. which is still not scheduled. Hopefully the last two draws were a glitch and he looks more normal on paper. Then I think I will feel better. maybe... well actually he woudl need to not be red and itchy and rashy. THEN I would feel great. My mom took him out today and she was shocked at looking at his skin. She was so glad I warned her cause it is so red and veiny and blotchy that she thought he was having an allergic reaction. I told her that it wasn't, that he just looks like that on and off in the day. weird.
Prayer request: Jen is in rejection. Please pray the med change turns it the other way.
Just for fun: I also wanted to link you to Tanner's site. I just love love reading what Tanner's mommy's posts. He is a twin and the photos alone are worth the visit. Always some adorable picture of him and his sister getting into something. Little tanner and morgan were 28 week old preemies. Then tanner was diagnosed with Biliary Atresia, and recieved his gift of life soon after. He is doing aweseome! SO just for fun, I wanted to link you there. I always smile when I see their pictures.
Last but not least..I wanted to say Happy Mothers day to everyone and a special happy Mothers Day to my friends out there with chronically ill children, or who has lost their child to disease. Some of you mothers (and you know who I am talking to.. haha) could teach an accountant a thing or two when it comes to spreadsheets of lab results, and how you file the 1000 EOBs you get each year. I give you a hug: for having to hold your child down while they beg you to stop (poking, prodding, or just scaring them). For the mothers who rock their child only in their heads and hearts because their children are not here on Earth anymore to touch. For the mothers who get a diagnosis that could be the end, but bravely still teach your child how to sing and dance. For the mothers who give up their beds, to sit on a chair just to be close to the little one as they lay in a hospital bed. For the mothers who have pagers and cellphones waiting for THE call. Hoping that the next one is the call to say that their is a new life waiting. For the moms who never get that call. For the mothers that don't really fit in with their friends. But so glad that their loved one's don't "really get it," because that would mean they would have to live it too. For the mothers who have to weigh the odds of "is it worth the risk?", everytime they do something, (and live with the guilt when it was the wrong choice) And for the moms who know we must live like it is the last day we have.
I have a new baby, my first mothers day with him. And with all the stress it never crossed my mind that I was a mother 2X. (that means 2x the presents right??) My brain is so straight focused on Aiden, this last week. But my sweet baby Mason brings me a joy, that I didn't know exsisted. Ease. Freedom. Just sitting and enjoying.
I think to myself, 'God, I would have appreciated Aiden if he was born healthy'. Why was it him that was chosen to be born with disease? Sometimes I think, 'I would have not taken him for granted and if it were as easy as Mason, I would have had tons of siblings for him.' Being a mother to Aiden is wonderful, precious, and sometimes heartbreaking. It breaks my heart to see him sad.. just like any mommy out there. I feel alone some days, so I have mastered a skill of denial so I am not alone. I feel judged by others somedays, because they don't live my life. They don't know how hard it can be. But how rewarding it really is. I don't care if I break any parenting rules with too many hugs, or letting him slip into bed with us in the middle of the night.
Being a mother, to me, is why God put me on Earth. I have hopes for both of my sons. I hope for them to have a heart that loves God. I hope they can grow old, and live full lives. I hope that they can find peace when given trials. I hope that they know how much I love them.
A special Happy (late) Mothers Day to all of you moms who I have grown to love at CLASS and Liver Familes. To all the Moms on Caring Bridge. And specially to the moms who have lost their children.
God bless, and hug your babies today!
Lisa
Thursday, May 11, 2006 6:55 AM CDT
UPDATE: shortly after I wrote this early yesterday morning, Aiden had a seizure. (or some nuerological event)He got discharged from the hospital with a "seizure diagnosis". He will be having his MRI and EEG and other tests sooner thasn later. He is fine now. He also has very high red blood cell counts called polycythemia... But to me it explains why he is all red and veiny all the time. Also number one symptom to this is "itchy".... I finally know why. SO I will let you know what this all means asap. Please keep praying that God is revealing enough to make him all better. Thank you so much
The orginal update (ironic as it is)
Chris got voted off of American Idol!!!? geesh... and David Blaine gets a 1 hour prime time special to hold his breath and turn blue by choice?! Uhh David.. Oxygen is your friend! Take it from Aiden.. Blue = BAD what is this world coming to?
after being poked 7 times and tortuting my son yesterday labs looks like a mess. probably a lab error.. we will see if we have to re draw
In other medical news.. there is none. It has been 3 weeks since we asked Aiden’s transplant center to check on the experimental treatment Aiden’s new immunolgist wants to do. I have heard nothing. I have been bursting at the seams to share all of the progress. But there is no progress. My pediatrician wants Aiden to have a full neuro eval for seizures, also done in Atlanta, and again heard nothing. SO we are just scheduling it all here. I am, as usual, in total denial and avoiding all of it so I have done NOTHING to pursue it. AT least I am honest :-D
IN other areas of life:
Things have been very good!! We had a really wonderful visit from Aiden’s Uncle. Uncle Thad.. or Uncle ‘Dad,’ as Aiden called him cause the “th” sound is a hard one, had a lot of fun too with our ball of energy. He was still coming down from the 60mgs week and a little spit fire. They swam on Sat, and went fishing on Sunday and Aiden had a blast! And of course when Uncle “dad” left town, Aiden cried and pouted for a good while. Here are some really cute pics of Uncle T and the boys. 
SO Aiden and I had a very sweet date on Saturday night. It was like the prom.. except my date was 3 foot tall and WAY cuter than any high schooler I have ever seen. Lol. (non biased I am sure) 
This recent Saturday I went to the American Liver Foundation “Salute to Excellence”. Aiden was great the whole night, my very good friend Michelle came to help me with Aiden (Thank you!!) so we were being escorted by a very adorable and very very full of himself 4 year old. 
(here we are dancing up a storm)
It was a wonderful event held at the Hyatt in Down Town Tampa. There was a good show of people, and it seemed very successful in raising money and awareness about liver disease. I was asked to speak about Aiden, and about our experience with liver disease. I prepared my very first WRITTEN speech, (verses just winging it like I normally do) because I knew that I would need that paper to help me get through the emotions of the evening. I have spoken at several large events, and in fact this very event two years ago, and just like that event.. I was preceded by Haley. Two years ago, Haley came all the way from TN to Florida to sing at the Salute. She wowed them with her voice, and her presence. Saturday night, again she wowed them, but sadly it was in the words of her last poem, that I had the honor of reading. It was written just two days before she passed away. It was a lovely evening, but bittersweet for the whole ALF board, as little Haley was on all of our minds. The American Idol Teen winner sang two songs… and my favorite one was “Think of me…” and she sang it in honor of Haley. There wasn’t a dry eye, when we ‘thought of her’.
SO I spoke, and it felt good to tell people that liver disease breaks the stigmas that society places on it. The faces of liver disease aren’t what people think. It is innocent faces like Aiden’s and Haley’s and SO many other children that we have grown to love and know.
Other than that things are pretty typical in the Hawk household. Joey is continuing on with tradition with being the weirdest person I know. I Love him so much, but boy he is so stubborn. He has this “thing” about carrying in the groceries. It isn’t something he has ever stated.. but no matter HOW many bags I bring home he must carry them all in to the house in one trip. Seriously the man has had blue fingers from twisting heavy plastic grocery bags cutting the circulation off.
SO on Sunday he tells me he wants to go to the store with me. He buys groceries like a famine is coming. So for all his Albany, Ga fans…this one is for you. (wink wink) here is Joey.. my insane husband carrying in the groceries Sunday. He didn’t know I was taking the picture, but when he saw me.. we both died laughing…
He just HAD to get it all in one trip… total freak.
Love you
The “sane one” Lisa
Prayer requests:
Natalie.. the sad verdict is in. She will be relisted for her second transplant in the future. Pray for her family as they struggle with this news
Isaac: PRAISE! He is engrafting his bone marrow. His ANC is up and things are looking better.. but still needing prayers. He is considerable pain.
Angel Haley's Family. Yesterday was Haley's younger brother's birthday. A time of remeberance and happiness. But always sad, with out Haley to sing Happy Birthday.
“Blessed are those who weep now, for you WILL laugh!” Luke 6:21
Thursday, April 27, 2006 5:34 PM CDT
As most of you all know my Dad, he recently was diagnosed with Bladder cancer. He has done wonderfully! SO far so good. But with it's drawbacks obviously. His treatment is a thing called CBG (?) and they inject a TB virus into his bladder. It kills the cancer cells and has great success. Kind of weird though. I knew when I read/heard about my Dad's treatment this was gonna be tricky. I called the transplant team in Atlanta and much to all of our dismay, Aiden can't be around it. Although totally safe for regular people it is just the rules we have. So we are nearing week 3 of Aiden not seeing his Grandpa, and it has been tough. He missed Easter at their house, and he asks about him all the time. So please send out prayers that the next 3/4 weeks of treatment go smoothly so we can see Grandpa/dad again. We love you Daddy!
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Aiden's Birthday Party
Finally things have calmed down here (literally with him back on his normal 7.5mgs of pred from the 60mgs things are MUCH calmer) SO I wanted to tell you all about Aiden's amazing 4th birthday. We rented out the Captain Memo pirate ship and sailed on the bay. 
Pirate Aiden had an amazing time, so did all of us. Nana, Babu, Mimi, Grandpa (this was a few days before treatment started), myself and Joey all got to see Aiden have his first birthday real party. There were some quick tears, and mist-ed eyes but it was so joyous that it was usually just all smiles. After all he has been in the hospital every other birthday and we just were so thankful for his good health!
They had face painting, games, water-gun battle with the pirates, 
singing, dancing, cake, (see below) etc... the time was limited on the boat so all Aiden's wonderful gifts were bagged up for later at home. As we were docking the ship Aiden (who was on the second deck) got everyone's attention
"EXCUSE ME!! I have to say something (he is so much like me it is a shame)... Uhhmmmm aren't you forgetting something?" He says with a very concerned look.
"No, Aiden what??"
"MY presents! Don't I get presents???" Aiden says matter a factly, and rather politely considering you can tell he was thinking about the presents through the entire boat ride.and patiently kept that to himself till he was certain they weren't coming. It was hilarious to me. We all got a laugh and told him that we can open presents at him. His usual response:
"Phew! That was close" as he swiped his brow and ran to get off the ship.
The party was wonderful and Aiden had a blast. And darn it the dairy free, soy free, peanut free cake was wonderful! (it fell apart and was all crumbly without the egg, but it was tasty enough) I decorated it myself as a treasure chest
(yes I know you are all shocked at my AMAZING cake design I should get paid for this stuff right?? HAHA) ... the yellow things are gold coins, Joey was very confused by the yellow dots. When I showed Aiden I said, "Do you know what this is??" And he stared at me with the most genuine confused look. He said, "a rainy day?" .. please keep laughter to a minimum it was an effort to be remembered hahaha
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SO the boys and I went to the grocery store yesterday and Aiden decided to get Rolex some doggie treats. I, of course, have to read the ingredient label on the dog treats to make sure they are safe, and so the search for the safe treat was on. After realizing that they actually put MILK in the "T-Bonez" snacks.. We moved to the "Beggin Strips" (fake bacons made from pork by-products, and something that feels like 'play dough'. )
SO We come home and Aiden excitedly feeds our already FAT Jack Russel a Bacon stip. Then another.. I pick up the bag and see where this is headed. Fast forward to today. I am folding clothes in my room, watching a little Oprah on the side. (no Joey, bon bons were NOT involved) and I pass through the living room to find Aiden with the Beggin Strips bag. A conversation begins:
"Aiden I told you to please ask Mommy if you want to feed Rollie a treat. " I give him a little look and pick the bag up. Hmmm??? it is alomst empty?!
Aiden eyes widen, and look at my innocently.
"Aiden did you feed Rolie ALL of these treats?!" I am shaking the bag and think even Rolex who is a conesour of all things "meat-ish" couldn't possible eat this whole bag! Then I see Aiden's guilty grin. My mind blanks out. Please please please tell me child...oh...
"Aiden," I ask in complete horror at my question " did YOU eat these bacon strips?"
A big grin apears on his face. At first I am comforted. I believe he is giving me one of those looks like, 'mommy you are nuts'... but then I think the smile looks more like,"mommy you are so smart'
"No mommy... tee hee hee" aiden giggles with GUILT
"Aiden DID YOU EAT THE DOG"S TREATS?"
"No???" now in a questioning answer
"AIDEN, TELL MOMMY...."
"HAHAHA NO MOMMY I DIDN'T EAT THOSE TREATS" and he still looks guilty.
I suddenly realize that the things STINK. They stink like the nasty Bacon smell you ever smelled. SO I lean down and tell Aiden to let me sniff his breath.
"Aiden blow on Mommy's nose. I want to see if you ate one."
Aiden looks at me, thinks for a moment, still with his tiny smile. He blows on my nose. And then he says this:
"So, Mommy? Did I eat them?"
With that question I will never know the truth. I have no clue if he did, but I am just thankful that I read even dog food labels. In this home you just never know what is happening next. Good Grief!
So that concludes this weeks update, of course excluding a prayer request list:
Please pray for the following
Isaac He finally ha dhis bone marrow transplant. He is in the most dangerous stage of the transplant. zero immune system and he just spiked a fever. PRAY for him PLEASE.
Annika her liver is slowly getting worse, and we just pray for wisdom, strength and faith for them as the proceed for a third liver this fall.
Cheryl, Haley's Mom ... A woman who inspires me. Who has taught me. She has held me up when I was desperately needing a friend who "got it." And I just ask for you to pray for her. Pray for her for the long haul. Her grief is in it's infancy. Her family is learning life one day at a time without Haley. Pray as hours tick by she feels comfort from her Lord. That Haley will come to her in ways she can believe.
Please add Natalie to your prayer list. She has been doing good, but Lord I just ask for FULL healing in her bile ducts. That her Mommy's liver is the one she will keep for life. A long wonderful life
Pray for Aiden, as his doctors are creating very exciting things for him. Still, I will wait to share once we have approval. Once I know if we are taking part of a new study and a new plan.
God bless you all!
Lisa
Wednesday, April 19, 2006 1:24 PM CDT
Aiden is 4 years old today
I am just so overwhelmed today with emotion. Unlike my normal self though, I have few words for this precious day. But here are the words that do come to mind:
Aiden IS:
Baseball and sports,
Playing at the park.
The world's loudest laugh
but still scared of the dark.
Thomas the Tank engine,
and riding his bike.
Cuddling his baby brother
silky hair that's so white.
Karate chopping pillows,
and fishing with Daddy.
Singing silly songs,
and dancing like his mommy.
Perfect labs,
spongebob and squidword.
"Blue baby" is still special
especially when he gets hurt.
Peeing on trees,
much to my dismay.
learning to swim
Always time to play.
Aiden is LOVE
A miracle; a joy.
He's 4 like Gordan,
Happy Birthday sweet boy.
Here is Aiden... 1 year old (oh how he would KILL me if he knew this was on his site haha)
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Ps/we had an incrediably wonderful visit with a new immunolgist yesterday. He has some amazing plans for Aiden. I will update that soon.. but let me say that things are looking up!
Have a wonderful week. Hug your loved one, and thank you for checking on us. It means so much to me. Thank you for loving Aiden and taking the time to pray. You have all been such a tremendous support over the last 4 years.
Love,
Lisa
Monday, April 17, 2006 11:49 AM CDT
April is National Organ Donation Awareness Month! Please talk to your loved ones about being an organ and tissue donor.
Aiden is very reactive-y to everything. Hivey and red. He really hasn’t stopped itching since his latex reaction. But I don’t think he is reacting to latex. I think he is just flaring from it. I think it spiked his IgE again. SO now he has a billion little antibodies ready to attack anything.
Aiden had one of his ideopathic anaphylaxises friday. I probably should be updating about this when it isn’t so early in the morning and I am less depressed, but who needs details? Lets me just say to those who know me well…(it was like the BBQ potato chip all over again). Basically he went unconsious in the car, “My eyes want to sleep” and when the ambulance showed up I had to leave Baby Mason in the car with a paramedic as the turned the lights on and flipped it to high gear. I swear it was still moving as they were shutting the doors. He was all swollen and his lips were big. He was so upset and scared. I have yet to experience the “fast” drive to the hospital, this was pretty scary for me, so I know he was terrified. Aiden really started to calm down and improve with the next five minutes. By the time we were nestled in a bed in the ER. He was very sleepy. His heartrate was low for his normal, but they kept saying it was the benedryl. He was screaming at the top of his lungs and his HR was in the 70’s.. not typical AT ALL. But 4 hours later when he was setting off the pulse alarm with a 65 pulse, I just wasn’t buying it. Benedryl is something he takes EVERYDAY.. he never is sleepy. He slept a lot of the time. He even laid there and wet him self and never got up. He just wasn’t normal. His blood pressure was lower than normal as well, But it was all in the normal range. Just not normal for what he was going through. So since he wasn’t “sick” we went home after being there for hours. We will be going to Atlanta shortly to see them about this. Really this is just out of hand. There was NO food trigger AT ALL. This was all ideopathic. (fancy word for DON”T HAVE A CLUE). It started days before with hives all over his arms and legs while playing in the sprinkler. He has had hives on his cheeks all day and a rash as well. The transplant team put him on 60mgs of prednisone tapering back down through the week. This is the second time in a month he has been on this dose. If anyone isn’t aware of the side effects of prednisone.. let me just say. EMOTIONAL EMOTIONAL EMOTIONAL.. In the past when he was on such high doses, it was really laughable cause he would be so up and down. But this time he has been just down. After a 2 hour meltdown and crying last night I just was so frusterated FOR him. He just is so emotional. The tears started this morning as his eyes opened when he woke up. Litterally.
So I am just ready for him to be back to normal. Hoping the steriods do the trick this time. And just looking forward to talking to the team and his immunolgist. Things need to be investigated. I am not leaving till they are. I have no idea what exactly I am talking about, but we need to look into this more. Check out his immune system better, run more tests, see WHY this is happening. People don’t just go unconsious from playing in water. People who are on the amount of medication he is on SHOULD NOT be reacting like this. To say the LEAST the kid shouldn’t be having a hive with 60mgs of prednisone. And hiving from what? There is NOTHING in this house. Nothing. UGHHHH
OK so that is the scoop. The last two weeks really have been just a mess. Also pray for karate… Aiden was so proud and excited he received his very first stripe on his belt last Tuesday. It was for Teamwork. I was all choked up when we clapped for the children as they got their stripes. I just kept thinking “THIS is what it is all about!” My wonderful high feeling was soon KNOCKED Out of me when the teacher sits down holding a white grocery bag. Gee… what could this be? She pulls out individually wrapped goody bags full of chocolates, snickers (yes peanuts), candy. GOOD FEELING GONE. Aiden joyfully and for the first time, accepts the goody bag thinking it was all safe, cause a TEACHER gave it to him. I am now looking at my girlfriend and we are both cringing. Aiden runs over to me and I try to be smooth, and just take the bag. But he WANTS it. Ugh….. The teacher is looking at me like I am some whack job, taking his candy. I lean down and tell Aiden that he is allergic to some of these candies and that we will go get a really neat prize. Crocidle tears, and the bottom lip pokes out. He is devastated.
OK let me just vent and interupt right here. WHY MUST WE REWARD OUR CHILDREN WITH JUNK FOOD for everything?? Do kids have to eat CANDY like it is some right of passage at EVERY event? I mean, not to sound like my mom or anything, but WHEN I WAS A KID.. (lol here it goes you know I just turned 30 and it is showing) I never got candy! We didn’t eat out, and my school lunches were a sandwich, fruit, and a quarter for milk. I mean wasn’t the STRIPE on the belt reward ENOUGH?? He was gleaming from ear to ear with his stripe.. but NOO not in this society. We must shove candy and junk into our kids cause that is just what we do.
OK back to the story: SO The teacher thinks I am some mean mommy, and I know this is the time where I must tell her that she can’t give him candy or ANY food, he has allergies. I tell her very casually, not to alarm her, because for some reason when I am telling people this is what happens:
WHAT I SAY:
Aiden has some food allergies, and it isn’t safe to give him candy, can you please tell me the next time you plan on doing a goody bag so I can make one up for him and give it to you?
THIS IS WHAT SHE HEARS:
“Bla blabal bla bla bla bla bla bla ALLERGIES bla bla bla CANT bla bla LIABILITY!!! LIABILTY!!! LIABLITY!!!”
SO her reaction isn’t good. She is actually pretty upset, but just in case she wasn’t there yet I KNEW from this reaction that I could NOT keep his liver transplant from her. She was just saying to me “YOU NEVER SAID ANYTHING!” over and over.
SO I realize that she is probably a tad of a control freak.. (aka black belt in karate) and I tell her about his liver transplant too. She flings right into the deep end. I reassure her that he is FINE. His liver won’t POP OUT on any kicks or punches.(rolling eyes) That there is NO need for concern. After all he was just a baby.. it isn’t like we have to think about that NOW (and the crowd laughs in unison)
SO we leave karate, go to the store find him some kind of treat for his stripe.. (realizing that now the stripe was second fiddle to the candy).. I don’t think she is going to kick us out or have him leave karate. I think I would have received a phone call by now. So things look good there.
And that segways into my last thing. Back to the first actually. April is organ and tissue donation awareness month. And I wanted so badly to tell you what this means. It stands for LIFE. Too many children are gone. Too many people die. 16 people every day, die waiting. They don’t die because people don’t want to be organ donors. They die because people don’t make their wishes KNOWN. You must tell your loved ones that you want to be an organ donor. They say 90 f Americans INTEND on being organ donors, but only 13 re. Why? Because when it comes down to that time their loved ones, who are already hurting and grieving, just DON’T KNOW what to do. SO please not only decide to become an organ and tissue donor, but TELL your next of kin. Because there will be great peace for them, than to fulfill your last wishes.
Please take a moment to pray for these families. They all have lost a child either waiting, or from complications from liver transplant. If there were more organs available, then children would not have to be SO sick. So even if they get their organ the toll of waiting is too great.
Angel Haley
Angel Zane
Angel Sarah
Angel Ava
Angel Jayli
Angel Grace
Angel Hunter
Angel Jacob
Angel Brianna
Pray for the families that suffer these incredaible losses. There are SO MANY other children. So please, tell someone today. Take that one minute it takes to tell someone, and do it in honor of these children. Children who deserved to live. Do it in honor of Aiden’s donor. A newborn that GAVE LIFE.
Thank you,
God bless, and have a wonderful week.
Lisa
Wednesday, April 5, 2006 7:10 AM CDT
With all the meds, suppression, and prevention, Aiden has developed a new allergy. He is now allergic to latex… no problem cause it isn’t like goes to hospitals or anything. (rolling my eyes) It all started last Wednesday I was at the party store getting stuff for Aiden’s birthday party (more on this later). Of course he wanted everything, so I got him a “free” balloon to suffice. Mason was letting out his newfound laugh every time Aiden bonked himself in the head with the squeaky latex-y balloon. Then it was just minutes. Hives everywhere. Itching from head to toe. I was sort of in shock cause I thought, maybe it was the shopping cart, although I wiped it down as I always do. He kept digging at his scalp and itching his hair, and I see that even there it was bright red and irritated.
“Oh C’mon this can’t be a latex allergy,” my immediate thought. So like any other mother who lives in the wonderful city of Denial, USA I take the balloon and firmly press it to his arm. I hold it there and sure enough…minutes later red and puffy. HOW MANY BALLOONS has Aiden had? I mean we hadn’t had a problem before. So coming out of Denial, where the skies are speckled with sunshine and silver lined clouds, was difficult. No breathing, runny nose or even runny eyes problems.. nothing. It was just hives thank goodness. I was sure it wasn’t the balloon. But even after I gave the balloon to some kid in Target, and flushed Aiden with Benadryl the itching never went away. All night, next day, and the next day. Benedrylling him often but he was still itching.
I finally succumb and take him to the doctor on Friday. So sure that this HAD to be viral and I was loosing my mind, I cancel the first appointment I made that morning. We head to Toys R Us and again, red itchy and now he is all blotchy. Oh for crying out loud! So finally to the doctor. After sitting in the room for a short period of time.(directly next to a box full of latex gloves) I mention, “But he has never had a runny nose, no lung involvement, no runny eyes etc” Aiden’s pediatrician is staring at him as we talk, and Aiden is digging at his skin.
Sneeze Sneeze Sneeze… cough cough.. ..runny eyes, runny nose…..
ALL ABOARD! ONE WAY TICKET OUT OF DENIAL… TRAVELING QUICKLY TO REALITY, USA……
La la la la …And so forth. You know the drill…
Yucky icky poopy latex….
I always manage to find some maturity when dealing with a new drama. After Aiden’s doctors and nurses (and myself) scraped our jaws off the ground, it was official. Aiden has developed a latex allergy, and a bad one at that...anaphylactic to gloves and other medical stuff..
So my best friend Kitt calls me, Friday night, she learns of our exciting day from Joey and then asks me. “Hey how are you? What are your plans this weekend? Hermit-hood?” oh she knows me well.
I sigh, think to myself, well it IS a Friday.. what a waste it would be to ruin a WEEKEND in hermit mode.. so I reply, “Nahhhh I will just dive right into being a hermit in my pity party tonight, and this weekend we will enjoy”..
And that we did. Saturday was fine, although another itchy day. He was on MEGA Steroids from his allergic reaction IN the docs office, and also prescribed Benadryl around the clock
So Sunday was glorious. A beautiful day. Joey has a brilliant idea we will ALL (including the six-month-old) go on the boat. Now when I say we are going on the boat I am sure some have a nice family boat in mind. No.. this is Joey’s little fishing boat. Not exactly a luxury on the waters but it floats.. and it is fun!
So Joey is all excited and decides we can put Mason’s excersaucer on the boat. (umm if you had any doubts that HE was the odd one in our family please read the journal entry about Aiden and casting his fishing line in the bucket) So off we go.. it was wonderful weather. Almost cool on the boat, but we docked it at the beach and it was HOT.. needless to say Joey is a new shade of RED that I didn’t know was humanly possible. And yes even Aiden (GASP) is sunburned a tad on his back. (oh I hope his transplant team isn’t reading this)
Here are some pictures of the incredible time we had. I hope you like it. Of course my favorites are of Mason, squeezed into a life vest, squeezes into his excersaucer. LOL that will be a memory for life! (and the last time we do it too!)
UPDATE: I just got off the phone with Aiden’s doctor.. Oh my gosh.. They are actually creating a latex free exam room for him there. It seems that there is SOO much latex in normal exams rooms including the beds, all instruments, gloves, and much more, that they are completely renovating a room for him. Oh my gosh…
ALSO we had to cancel Aiden’s dexascan, and glaucoma and cataracts testing which was scheduled for tomorrow. No one (especially me) feels like he is stable enough with his immune system to handle general anesthesia in a room full of latex.. no thanks! So we will do it another time when he isn’t flaring. Phew… that makes me happy.
OK enjoy the pics!
playing in the surf
Mason in his life vest
Mason in the excersaucer LOL!!
Aiden, and our boat in the back ground
I hope you liked!! have a blessed week!
Prayers for Mason he has croup, and prayers for Aiden he stays healthy his birthday party is SATURDAY!!
Love, Lisa
Wednesday, March 29, 2006 12:33 AM CST
Aiden's Grandpa/papa (not to be confused with Babu) My dad, is in good spirits. I brought him BBQ for dinner last night at the hospital food, knowing just how lovely the food hospitals have. yuck. He was so greatful he called this morning.. BBQ for my Georgia boy daddy is like giving him the moon.
He has been diagnosed, with High grade but only stage 2 carcinoma. Bladder cancer. They found NONE so far on the outlying areas that they removed. It is looking very good. It is a FAST growing cancer, and just 3 months ago it was NOT there on his scope. They said that time was very precious in finding this cancer.
The plan is to do a radiation and follow with his oncologist. I just ask you to continue praying for my Dad and my mom. They are in great spirits and have an unshakable faith... Dad comes home from the hospital in a day or two. Aiden is very excited.
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ok as promised.. here are some karate pictures.. I can't wait to show them to my Dad, I know it will help raise his spirits too.
here he is waiting to leave at the front door
Aiden was kicking this bush practicing before class
here are the kids making a "fort" showing one of the 7 principles.. TEAM WORK.. (Aiden proceeded to sing the entire wonderpets song on team work) I blurred the other kid's faces 
and here he is doing his back kick.. this was hilarious.. he was so serious... 
Mason all ready for Karate too!
and finally if you can believe it.. I found another peanut on my outside patio table! C'mon squirrels! Geesh... This was scary.. Aiden was about to touch it.. geesh
please pray for my dad, Annika, Isaac, Haley's family, and Natalie, and little Caden
lots of love,
Lisa
Sunday, March 26, 2006 7:15 AM CST
***** UPDATE: Please pray for my Dad he is having a surgery to remove a growth on his Bladder today. It looks like it is Bladder cancer, and I just ask you to cover him in your prayers. Also pray for my Mom during this time. THANK YOU!!****
Previous update:
OK today’s update will be a several parter.
Part one: MEDICAL
We got labs back. They looked great. Boy I am sure glad Joey and I pushed to get that prograf lowered.. after dropping it another 1mg his level is still 9.7 . I love our transplant team, but that is crazy. He was running high teens/close to 20 for his prograf; high prednisone; and high dose cellcept. That is like when he was JUST transplanted. SO anyway, it is lowered. But even with the big drop it is still not low enough .. so hopefully another drop will be in the future. When I said this to Joey he simply scoffed, “yea right”… I tend to agree with his sentiments.
I also just scheduled Aiden’s dexa-scan, and cataracts and glaucoma testing. (as the crowd cheers) it has only been 2 year I have put this off for. But after a brief discussion on Thursday by his pedi.. she encouraged me to schedule it. I guess my “What are they gonna find.. He had a liver transplant?” comment didn’t go over well. Her reply was, “Well lets just hope when he is a teenager, and he is wanting to run track, all his bones don’t break…” well put. Ok. Touche’ I love my pedi…. she is almost like family at this point.
Back to the labs. YAHOOO his Ggt: it was.. 8 (oh yes liver friends if you want to comment on the 8 Ggt I would love to read it). Like a proud mom with her kid’s report card: Straight A ’s! “LOOK Mom! MY GGT it’s 8!!” Oh Hunny I am so proud! :-D You can also tell from his labs he is back on that cellcept (boo hiss… booo hiss) The cbc is all pretty normal just lowered. ANC lowered, WBC lowered, and so forth. Pray for no bone marrow supression in the next month. This boy is having a birthday party THIS year. lol
SO over all medical wise we are excellent. Not thrilled about general anesthesia coming up with the dexa/ eye stuff, but whatever gotta do what,we gotta do. Just more trips to Toys R Us. (something about a yo yo ball)
Part 2: RAMBLING
School:
It is coming soon. Soon, Pre-K is starting. And so shall Aiden’s homeschooling. I am thrilled to be the one responsible for my child’s intellectual demise. Oh the panic and horror of ME, being in charge of teaching my child. I mean, I am capable of the ABC’s, (though you all can verify the spelling is horendous) yes counting.. I am pretty good up to about 20 or so. But I just have this fear about forgetting something. BIG.. Like he is 18 going to college and they say, Aiden can you fill out this application? “Fill out? Write!? My mom never taught me to write!?” Ok so that seems a little silly, but a fear none the less.
Recess:
Aiden started Karate! (pics coming on Tuesday) He loves it!!!! As you all know, he is a SpongeBob freak (uhh me and Joey are addicted as well) and Sandy Cheeks (the underwater Texan squirrel) and SpongeBob love karate. Or “KARE-ROT-TAY” So Aiden went to his first “Little Ninga’s” class last night. He was so excited. ALL over the teacher as usual. Even held her hand once. She asked for a high 5, Aiden gazed lovingly at her, High fived her and then held her hand. Oh my child…. Sigh. He also “chopped” the bag, did his kicks, rolled on the mat.. and recited the 7 little principals. I have no idea what they are. Something about respect and listening. I don’t know… I wasn’t listening. Haha just kidding. So he has his little uniform and he is a “white belt” or as Aiden says, “I AM NOT A WHITE BELT! I AM AIDEN. AIDEN JOSEPH HAWK” right gotcha Mr. Literal.
SO with that and his little Wednesday Science class, he is just loving all his new things. He is so hungry to learn. He wants direction from teachers SO bad. He loves to raise his hand and stand in lines. He loves to hold hands and do what they do in school. I am glad for him, that he gets to do this. Now if I can only figure out how to get him on a yellow school bus. Shhh don’t say it too loud knowing Joey it is probably some redneck fantasy of his to live in a school bus or something.
After school detention:
My favorite thing about his Karate class is, we are trying something new. Instead of me going into the class, walking up to the teacher and saying, "I need to tell you about Aiden. he has.. bla bla bla" and then give and entire medical history. I am just keeping it to myself. After attending the class, there was no risk to him what so ever. There is no food there. There is no body contact for me to have to worry about the liver. SO guess what? I am not telling anyone (unless someone asks). I signed my waiver like I should. The waiver never asked any questions.. just a spot that says "sign here". I am never leaving him there. I have my epi pen. It isn't like other parents have to go up to teachers and tell them their child's life story, so me neither. I honestly am excited that for once in his life he is gonna be the “normal” kid not the LIABLITY kid. I am tired of having people tell us “they aren’t comfortable with dealing with his special needs” or even just the look of fear on people’s faces when I tell them he has life threatening food allergies.. geesh throw liver transplant in there.. and they turn white. SO for Aiden’s sake he is a kare-rot-tay chopper and that is it.
Of course this will all back fire on class number two when Aiden announces as he usually does, “ I am allergic to milk. I am allergic to peanuts. It makes me puke” whatever…
Part 3: I HAD A BLESSING OF A WEEKEND.
I had such a wonderful weekend last week. I was blessed enough to go visit one of my dearest friends in the world. I flew up to Tenessee and stayed with Angel Haley’s family. Oh how I wish I didn’t ever have to say “angel” Haley. I wish she was here. Cheryl and Bruce are pushing forward in their grief for Haley’s foundation. It is going to be amazing. I can feel it. I had a peaceful trip, I loved looking at Haley’s photos and listening to her sing. I loved just sitting on the couch and stuffing my face with chocolate with Cheryl. We watched some little monkey ride a border collie like 10 times on her TIVO.. it was hilarious. The only kind of hilarious you can have on such a sadness soaked visit. I visited her church. Oh Praise the Lord for them. Loved it. Felt right at home. But alas, as a christian, I am at home in the house of God, it doesn’t really matter what the sign on the door reads. We sang and we felt talked to by the spirit. I know that Haley is so proud of her Mommy and Daddy. I know I am too. Please check out her site if you have a chance. (even though most of you probably read this because she links you here.. ironic)
SO that is it. I have some serious prayer request. Sadly familiar names on my site:
1) Sigh… fellow train lover Isaac . How he has endured 104 days in the hospital with at least 4-6 more months left to go. He is an amazing child that will touch you. Please cover him in Prayer, as well as his parents. Who would have thought liver disease could have gone down this road…
2) Annika.. sweet little girl has been bleeding again. A new liver may be on the horizon, please pray for her that she is strong enough to keep enduring more of this bleeding.
3) Natalie.. The worlds cutest little girl. She has struggled and been through SO much.. another liver transplant may also be on her horizon as well… pray for healing!
4) Fiona has been through a marathon battle, but also her Daddy as well. Please pray for This whole family. They are so dear to me.
5) And of course pray for Angel Haley’s family. Pray for Peace and hope to rise from the beginning of Haley’s foundation.
let me end with a few pictures I like to title:
NO MORE PRESS (mommy paparazi LOL)
call my PR person.. no pictures please!
With love!
Lisa
Monday, March 13, 2006 11:04 AM CST
Aiden’s new favorite joke:
Q: “Why did the bumble bee have to go to the doctor?”
A: “Because he had hives!”
Amazingly enough even after it has been told 100 times it is still hilarious to him. My little class clown… He LOVES to make people laugh.
Someone sent him the most awesome CD mix through the Make a child smile (www.makeachildsmile.org) program. It is all these great Disney songs. One of them is “Whomp there it is!” And goofy and Mickey sing with it. Well like His Mama, Aiden loves to dance! He just jumps on the coffee table and shakes his groove…
(My dancin’ fool: some of my friends may attest that Aiden has inherited MY cool dance moves LOL )
Well life is so wonderful here. Mason is turning 6 months next week.. Oh how I love him and his million smiles. The happiest little baby ever. He doesn’t sleep much, but he is a happy baby. 6 months was a pivotal time for Aiden. He was listed on a national waiting list for a new liver. It was at 6 months of age the doctors told us Aiden wouldn’t live to be a year with out a new liver. I am so greatful and thankful and in awe of our donor family. They gave us this precious gift through their grief. Aiden was all smiles when he was 6 months old. He was full of joy and smiles and soon to be healed with his new liver.
Here are some shots of Aiden at 6 months. He was a different shade of color than now.. and his tummy was bigger.. but look at that grin. Still my same boy.
It just goes to show you how thankful and blessed we are to have our dancing fool. Our little class clown. God is GOOD!
Have a great week!
Tuesday, March 7, 2006 9:17 AM CST
Hello all!
The power of prayer is amazing. Somehow Aiden and Mason completely avoided getting that NASTY upper respiratory infection. Aiden was getting it and then he just woke up one morning with no signs of being sick. So thank you for praying!! Also Atlanta called and said just to forget the whole lab schedule they originally put him on (once every two weeks for 2 months) His labs are so perfect they just said go to once a month. YAYY
I got a lot of calls about my "Attack of the Killer Squirrels" update, and my neighbor two houses down was reading the site (hi Lori and Merrit!) and mentioned it. The house directly next to me is their Mom, and I turned to her and asked, "SO PLEASE tell me you are getting peanuts in YOUR yard too" and for just a moment I thought.. Oh my Gosh maybe it IS a conspiracy from the squirrels. maybe they REALLY ARE out to get us.. LOL.. To quickly pull me off the ledge she assured me that they too were getting the peanuts in their yard as well. Phew! I was beginning to start wondering about that one. The peanuts have ceased since the update maybe there is some closet website readers that live in my neighborhood and read it and said,,,, "OOPS! I don't want to hurt the kid in the white house" If that is the case thanks!! Or maybe I should thank the squirrels?? Either way.. finding half eaten peanut shells all over Aiden's play fort is not ideal.. so I am glad we haven't seen too much peanut action of late.
Well, since we are still doing super-awesomely-wonderful around here, I am thrilled to be back to updating with family antics. This time the tables have turned and I would love to reveal the hidden secrets that are.. MY HUSBAND. I am sure it has run across your mind that.."Wow, Lisa is awfully quirky and silly" But the QUIRKINESS actually lies with my husband. This update is simply to reveal information that I already have known and yes some of our dear friends (i.e., Kitt you know oh so well) also fully know of Joey. The quiet sweet demeanor of Joey is really a mask hiding what truly is "him."
It is a beautiful evening at our house. The weather has been amazing. mid 70's. low humidity ... just perfect. I am inside the house picking up toys and the usual destruction from Hurricane Aiden. Joey has both boys in the back yard. I hear "TRY again!!" then an "ALMOST!" ... I perk my ears up and think, what are they doing back there? I hear Daddy say to Aiden, "Flick your wrist" and then I hear, "Mason, this is how you do it.… you have to keep your eye on the bucket"...WHAT Is he doing now?
I look out the back door and see a bucket. Hmmmm... Then about 20 feet away I see my son. Holding a fishing pole. Oh dear. Aiden has a look of determination as he is casting into the bucket...As I approach the back door so many different moments like this flood my mind.. The time where Joey SPRAY PAINTED our grass for where Aiden's feet should be placed to hit the his T ball, and the time where he "worked with him" to do the slip and slide..only after 1 hour did he finally realize that running and falling on your butt is easier...and more fun.. I think back to the times where Aiden was 6 months old and Joey would wrap Aiden's fingers around a baseball and then teach him to do a throwing action. Yes, by 8 months Aiden could throw a ball, overhand and hit you square in the eyes. Never missed. Oh the Basketball hoop.... At 18 months my toddling Aiden was hitting free throws 5, 10, 13 in a row...Even with his meds, Joey worked with him for days on how to hold it in his mouth shoot it down, and be done...Aiden was only a tad of a year then...BUT NOW, it is fishing??
"Hunny!? what are you doing?" I ask already knowing but still just interested in hearing his take on it.
He smiles at me and states "I am teaching the boys.. (yes you read that right..BOTH boys ...the 5month old BABY included) how to place your hook." He says obviously and matter a factly.
Aiden is thrilled he actually GETS it into the bucket.... I just laugh and roll my eyes. Typical. Poor Mason just sitting there drooling.. hoping he can just hold his head up and now Joey has managed to teach him to pull the fish in... UHH JOEY YOU WOULD HAVE TO CATCH THE FISH FIRST... one main point he always forgets to cover. It seems that Mason is also a "natural.".
So there they are bonding like men do.. boys whatever. Having a blast. Quirky and silly; but SO loving as a Daddy. Saturday Aiden and Joey went for a 7 hour fishing trip on the bay. (7 HOURS!!!) All their "hard work" paid off they caught a keeper ... but Aiden (being his Mommy's son) emphatically reminded Daddy that he MUST THROW IT BACK !! Poor Joey. Aiden also instructed Daddy.. "Can we bring home those two baits? The shrimp are my friends!!!" Joey says that the shrimp want to swim to be with their Mommy's in the ocean, but Aiden pouts and is sad cause he thinks HIS mommy (me) wants to see his newly found shrimp "friends"... Uhh NO THANKS AIDEN. Joey must have thought it was cute, and brought those two shrimp back to the house. Great.. now what? IS THAT YOUR CATCH OF THE DAY? Forget the fat Sea trout you threw back, I get two bait shrimps. YUCK.
SO as you can tell life is good here, we are loving the weather and just being out doors. I wanted to include one last thing. If you can please check out Angel Haley's page... Cheryl's message on her site is one for everyone to read. Please take a moment to visit www.caringbridge.org/ga/haley .. Jesus told us to be "fishers of men" so in tune with Joey working so hard at throwing that line right there in the bucket .. I wouldn't want to miss this opportunity to share how much God loves you and wants you to be with Him in Heaven one day. SO I cast out my line, and hopefully it will land in your heart.
John 3:3 In reply Jesus declared, "I tell you the truth, no one can see the kingdom of God unless he is born again." A simple gift that is given to us. we don't' have to be perfect. (obviously) we don't have to have perfect faith, or know everything about the Bible. All we have to do is just BELIEVE GOD. And Accept that Jesus DID die for our sins. If you believe then you are born again...
I hope everyone is having a GREAT week. I know I am going to have a WONDERFUL weekend, I am turning 30! WHOO HOOO... I can't wait. Finally a REAL grown up. tee hee.. I feel so blessed. I was chatting with a girlfriend who also just turned 30 last month, and we were talking about how blessed we felt. I remember being a teenager and thinking about my dreams. I always dreamt that by the time I was 30 I would be a married, be a mommy, and be able to stay at home playing with my children and enjoying life. It seems that my dreams have come true. No, I never thought that my first born would have faced so much but OH how I am just thankful to God that he chose us. We don't have a lot of money, or a big fancy house... but we have each other. I wouldn't trade this life for anything.
SO have a great week! Kiss those kids and hug your loved ones. I know I am hugging my sweet Joey for being the best (albeit silly) Daddy/ hubby in the world.
Love,
Lisa
Tuesday, February 28, 2006 11:51 AM CST
ATTACK OF THE KILLER SQUIRRELS:
OK is it just me or are PEANUTS "in season" or something?? They are everywhere lately! From the fire station play group, to my friend getting on in the mail in some advertisement. From me getting a bag of CrackerJacks on my front door as a marketing scheme for a local realtor, to Publix grocery store spilling a bag and "using the peanuts to make a big sign that reads PEANUTS"... Peanuts everywhere! Joey and I went to the park .. laid out a blanket. Sure enough a family was so sweetly cracking into their big bowl of peanuts as their peanuty kid's played all over the play equipment. Last week I was getting Aiden into the shopping cart the and PEANUTS on the SEAT!
And now the SQUIRRELS ARE CONSPIRING AGAINST US!.....
As I was playing with Aiden in the yard.. I see a Peanut shell. IN MY YARD.. and another. and another.. What one EARTH!?? There it lay with it's little crack in the shell where they squirrels took their goods and planted the shell in my yard. Are you kidding me?? 
Joey says to me.. "WHERE ARE THESE PEANUTS COMING FROM?" as he picks up another half eaten shell out of Aiden' s play area.
I am assuming someone in my neighborhood is feeding squirrels peanuts (either that or.. someone is really out to get us) What is next? Is Milk truck gonna have a "spill" in our front yard?!
OK so obviously with "attack of the killer squirrels update" nothing is going on in our home. Still getting over our colds. Still feeling blessed and happy. Aiden is doing good. And now with his Prograf levels back down into a more reasonable level... I realize my wild child is just that.. MY wild child.. no drugs to excuse this crazy behavior hahaha .... I love it anyway.
Labs next week.
pray for Mimi and Grandpa as they travel
God bless!!
XOXO
PS/(FYI: if you are reading my kid's site for the first time .. I am sorry this is the update that is welcoming you haha.. also I need to let you know my son is allergic to peanuts, I swear I don't have a personal vendetta on the peanut industry lol..)
Saturday, February 25, 2006 6:48 AM CST
Hey everyone.. just a quick update. As I signed out from my last update I noted I had a low grade fever.. we the whole house is sick now. We all have just a terrible cold or whatever this is. Aiden was SO whinny yesterday but eating and drinking like normal. He would just cry at the drop of the hat though. I went to feel his head and knew he had a fever. UGH!!!!
For Aiden to get a fever it usually means something big.. I wasn't scared that anythign big was happening though this time, but I had to be cautious and take him to the hospital for cultures and labs. He had a cough forming and as runny nose as well. You see, when a child is on the drugs Aiden is on, especially the steriods (an antinflamatory) fevers are masked. It would be like he was on Motrin all day every day but at high doses.. fevers don't come easy for him so when he has one we react. (onfact in Aiden's history post transplant three of 5 fevers were sepsis 1 fever pnuemonia and this fever... we don't know)
Once to the ER I was aware that it was going to be a crazy night.. probably the most packed I have ever seen it. YUCK! Aiden had his mask on and a hooded sweatshirt to protect him, sitting in a stroller, but I could just feel the germs all creeping around him.. ATTACK THE LITTLE BLONDE KID!! Aiden kept saying:
"Mommy, I am baby Mason .. GOO GOO GA GA.. hahaha I am just JOKIN with ya momma!" He cracked himself up! SO silly cause he was sitting in Mason's stroller. He thought that was HILARIOUS!
I am way too exhausted to tell the whole nights story but he didn't get home till early this mornign.. maybe 5 in the AM, and we had arrived at 6:00pm. They got and IV in him (drama) they got xrays on him (big time drama) nose swabbed (proud moment) and then they decided to run a dose of IV vanquomycin just due to his history of sepsis while we wait for cultures to come back. The transplant team in atlanta spoke to our ER doc (nice guy) who told them to hit him with a dose while we wait.
So Aiden is nestled in bed.. Joey is nestled in Bed.. I am coughing up a lung trying to sheild poor baby Mason.. whom I now hear is coughing a tad too.
OH MAN! SO say some prayers for us this weekend. Small stuff really.. but stinky stuff.
Please keep these people in your prayers:
Fiona
Carly (whom is just diagnosed with a new liver disease :-( )
Tanner (yay celebrate one year transplant anniversary!)
Haley's family
Isaac
Annika
Aiden
Monday, February 20, 2006 8:36 AM CST
URGENT PRAYERS NEEDED FOR A LIVER FRIEND RIGHT NOW. PLEASE I ASK YOU ALL TO STOP WHAT YOU ARE DOING, AND PRAY FOR FIONA RIGHT NOW. PLEASE LORD YOU KNOW THIS FAMILY'S NEEDS RIGHT NOW.. WE PRAY FOR HEALING
***********************
All things aside, last week was a nice week where Aiden, Mason and I lived in our Pajamas. It always goes like this for me. Sometimes I call it my "hermit" side after a reaction. But in the end it is a precious time for me to really play and bond with Aiden. We usually sit on the floor playing Thomas and cuddle in the bed all three of us watching something. (this week was more Sponge Bob and the Care Bears)...
He had swelled lips for the next whole day on and off. No other problems other than the usual GI reaction that follows as well. 
I was supposed to take him to the firestation on Wednesday but still in my 'hermit-hood' I chose to keep on the PJ's and not go. Got a call from a wonderful friend, that there was peanuts there. I was thankful for my sense to stay home... I would love to say it was 100istening to the Holy Spirit, but I will admit it was still a fear base decision to stay home and we were just blessed by it anyway. Thursday was the bowling alley. I had both the boys dressed and ready and just lost my nerve. I kept thinking about possibilities for another reaction, and just stayed home yet again. Aiden didn't mind.. it just meant more THOMAS for him. And indeed we made the 'coolest' track the wound under the chairs and around the coffee table, passing the toy basket. The toys would "avalanche" onto the tracks but thankfully Thomas was always prepared with his "break down trains," like Butch and Harvey. Phew! It was a close call.. that got repeated 500x that day.
So then came Friday. I am talking to my friend on the phone telling her about my longest stint ever in my PJ's and my other line clicks in. "Are you getting ready to go to the Cinderella play at the preschool?" Oh gracious. It was Hannah's mom and it had been discussed for weeks earlier that we were gonna go to the preschool and attend this "field trip". But I thought we knew all bets were off cause it was my 'hermit week' ... and also the Cinderella play was held in my Church's sanctuary where just 5 days earlier Aiden was epi-penned and taken by ambulance to the hospital. Great, the last place I wanted to be. (Hmm anyone smell Satan there?? Me not wanting to be in my church?)
I was then reminded about how there was a curly haired little sweetie sitting at her school thinking it was the happiest day ever that her best friend was FINALLY coming to school. And the loving comment made by Hannah's mom, "GET OUT OF THE HOUSE, YOU HERMIT!" SO I begrudently went. I got the boys ready, and as I peeled my PJ's off I felt a sense of relief and thankfulness.
I started to feel a little excited cause I was able to say to Aiden, " YOU ARE GOING TO GO TO SCHOOL TODAY!" To watch his reaction was so heartwarming! He ran grabbed his back pack , stuffed a few crayons in there a colloring book, (and of course Thomas). He was so excited and asked if we were taking a school bus. It was really cute. 
Aiden's back pack
Once we got there, he was a tad hesitant and asked, "Mommy are we going into the big church, or the "fun church"? " (fun church is Sunday school). I said the "big Church" and he just stopped for a moment, thought about it.. and then said.. "OK!"
We saw Hannah and we sat in the back. Ready for Cinderella. 
Me, Hannah, and Aiden
Cinderella and her "prince" lol
It was wonderful. Yes probably the only mother or person in history to actually CRY at the show, but I couldn't stop the tears. It was so good to see Aiden just sit with his backpack and laugh at all the funny things and yell at the prompted questions.
Aiden had a wonderful time. The little performance was cute. Although this is what Mason thought of all of it:
I just want to Thank NorthEast Park Preschool and their amazing love for Aiden. Thank you Ms Bonnell for always thinking of us, and although you may or may not have planned it that way, it was the perfect thing to pull us out of the hermit week. And onward to a wonderful weekend.
Sunday Aiden attended his friend's Birthday party and yet again was amazing. Never a moment of feeling like he is deprived. The ice cream was being handed out and and he 'fake gagged' and promptly said, "I don't like icecream I am allergic.. do you have any sorbet?" Praise God! He munched on his snack and just seemed delighted to be there. fake gagging and fake choking when he would look at the bags of chips that weren't safe or the ice cream. kelly and I got a big laugh out of that. Although I had to instruct Kelly not to keep eye contact with me cause I could again feel the tears of relief just brimming.
The "tunnel" keeps opening. The light at it's end is shinning even brighter. Oh what a wonderful thing it is. So that is it, We are back to the usual. I am feeling ready to take on whatever is thrown at us again. I am reminded that no matter what, God is in control, and that I need to keep him safe, but I can only do what I can do.
It is fun to cuddle and play Thomas for a few days in our PJ's.. I recommend it to every family. Memories that I would never want to replace with rushing around from one play date to the next... but play dates are fun too. Today I am getting the courage to have labs drawn tomarrow. His meds have been changed. Prograf lowered a great bit, cellcept added, and prednisone staying where it has been.. HIGH. He is to get labs every 2 weeks for 2 months. YAY for Magic cream. Last lab draw was pretty terrible though, 3 people holding him down, screaming in protest...all because of a bad draw the month prior. I know that typically after getting the epi the next lab draws are pretty terrible too. But we have to do it. Gee you would think after nearly 4 years of continous lab work I would have gotten used to it. No such thing. I know that all my "liver-friends" feel the same way. No matter how pleasant or awful it is.. How quick or prolonged. It is never fun or normal.
Thank you for checking in on us. Thanks for taking this journey with us! It is a fun ride with just some downs but mostly ups. We are thankful for everyday! Please keep praying Isaac, Annika, Little Marisa, Carly, and always Haley's family. Just took my own tempature.. it is 100.6. Gee great. Ok also pray for Aiden and Mason that they stay healthy too.
God bless...
Monday, February 13, 2006 12:14 AM CST
15
You would think we were some kind of neglectful parents or something. But that isn't the case, we are good parents. Parents who love their children very much, are sad when we have to reach numbers like 15 when we are talking anaphylaxis.
Yes, so as you guessed, Aiden had another (and lets say hopefully his LAST), anaphylaxis yesterday, during church. It was Mason's baby dedication.
Here is a picture of what Aiden looked like all dressed up ready for his Baby brother's big day: 
Our Pastor spoke precious words about us, about Aiden's health and the blessed health of our littlest one, Mason. We had finished the dedication, went back to our seats and onward with the worship and singing. Mason is an old traditionalist, he isn't a fan of the drums...yet, so I took him to the back of the church and rocked and swayed while Daddy held Aiden in the front. Aiden was enjoying a lollipop. A dum dum, supposedly allergin free... come now to find out they have sent out warnings about possible cross contaminations.
I know God just gave me "mommy ears" (as my pastor called it) and I knew he was coughing. I took two steps to my right, cause I couldn't see since everyone was standing and singing. Once two steps over I see a face I have seen before. Not yet frozen like in the past, but slightly panicked and red and coughing. A few steps forward, and I see the lips, slightly swelling, slightly bluing. I am rushing now to the front, do a pass off to Joey from one child to the other. I yell to grab the diaper bags, and epi pens and we rush to the back of the church. I think it all happened so very fast that no one knew what was happening, not even Joey for a moment. By the time we hit the back of the church, his lips were bigger, darker shade of blue. I grabbed the epi and chose a leg.
'chose a leg' yes this is a real thing. I actually sit for a millionth of a second and think.. "no not the right leg Lisa, do the left. Last time you epi'ed the right leg." How weird is that?! I remember thinking that in my head and then wondering why on Earth did I just sit and pause to remember what leg to choose. Like the other leg is "less forgiving" cause it just got epi'ed a few months ago? whatever.. it was weird..
Aiden fought kicking screaming yelling. He was back to his chanting, "NO IT ISN'T A REACTION MOMMY! NOOOO!" It always rings in my ears for a few weeks after hearing him say that. Oh if wishes could be true, he would be right.
Joey was busy on the phone with 911, I knew Aiden was OK for the moment cause immediatly his lips were pinker and then pale, and he was ok and not wheezing. Got to love that epi pen. (epi dagger)
The ambulance arrives, Aiden is hysterical again. He doesn't want the "mask." But the real issue was the poor EMT was just not a "kid" person. They don't know his history, and they talk to him like a novice.
"ok little Aiden, this thing is called a Pulse ox. We will put it on Mommy's finger to show you it doesn't hurt" Not knowing he owns one at home cause it this is number 15. The place the pulse ox on me, I am busy rambling away wishing they would just call medical alert and not ask me anything, let me console my boy. But obviously that isn't how emergency medicine works. SO I am busy answering questions as the non "kid person" EMT is trying to put the oxygen cannula on Aiden. Oh please just give up. He keeps trying all the time making Aiden more hysterical. They try to put it behind his head.. Nope. It isn't gonna work, I keep thinking to myself, get that thing away from him before he hyperventilates and REALLY needs it.
I look at the pulse ox machine and I see heartrate: 190. 190!! "Are you kidding me? His heart rate is 190?"
All at once the three paramedics look at the machine, then follow the gray wire that attaches the machine to the "patient"... me. Uhh it was still on me, I had totally forgotten. I sat looking somewhat calm talking about medical history and his long list of allergies ... but the machine was more like a lie detector test showing the truth of what really was going on inside. Heart rate 190..... I actually had a moment of hilarity from it.
SO on to the ambulance, Joey was able to claim the "coveted" one parent seat for the first time. I was able to follow in the van, free to cry and just get a grip. I kept thinking to myself..."Oh man it happened IN church. Oh man!"
Long story short, (did I hear someone say "too late?") the hospital which are normally stellar in performance must have been busy, cause they were less than stellar yesterday. They try to put Aiden in a room with just a curtain blocking us from some insane germ that would indeed not be pretty. I remind them of hospital policy that he is a TRANSPLANT patient, get a private room. They comply with a rolled eye or two.. and there we sit.
After almost 5 hours go by, they are about to give us our release. Aiden had finished watching a terrible 1987 cut of the Care Bears, then we watch Lion King, "Acuna Matiada? No worries.. our philosophy on life" thanks Pumba and Timon for the reminder. and we are finishing off with Spongebob movies. Joey and I are of course completely SUCKED into Spongebob, BARELY paying ANY attention to the child that is sitting in hospital gown miserable on a bed. All three of us SO absorbed watching Bubble Buddy and Spongebob wreak havoc all over Bikini Bottom. All the sudden Aiden does a full head dive off the bed. His hands are tangled in the bed railing looking as if both arms are gonna snap off from the way he was falling and bending them... I instinctively (super mommy) reach out to catch him before our next wound is "closed head trauma." I though, forget completely about the BURNING HOT COFFEE in my hand. By doing so douse Aiden from head to toe with coffee.. that yes, my friends, Had non dairy creamer in it. But the non dairy creamer ... drum roll has... DAIRY. UGHHHH
So after scalding Aiden with hot allergens I rip his clothes off throw him in the sink and wash him clean. At one point we all just break out in the most pathetic moment of exhaustion and laughter you have ever witnessed. Like the guilt isn't enough... Aiden of course keeps telling me "No problem Mommy, you didn't mean to it was an accident" geesh getting consoled by my 3 year old. Ughh I can barely take the guilt.
Aiden is fine. Acuna matada.. no worries. We took him home bathed him from head to toe, and put him in his favorite comfy PJ's. Of which he had diarrhea in, and then promptly changed him into whatever we could find. He slept with me, secretly my most cherished thing that results in an anaphylaxis. And today he is barely any worse for the wear.
He thinks he has a "cold in his nose" but it is simply the allergens. He also has diarrhea, but again the allergens. He is painting and playing and I asked him if he wanted to talk about "it", and he promptly said No. That is fine, I am now just dealing with what his doctors just told me we are going to do.
Lower the Prograf, add back on high dose cellcept (300mgs BID) UGH! And keep the steroids high. Labs draws every 2 weeks for 2 months. I had a very candid talk with our doctors, and Joey and I are just ready now to say, we are done. We just accept it. It is who he is. I have not lost HOPE but we do feel we hit the 'wall' of the obvious. The kid has a problem that has no cure. So just move on accept it and live our lives accordingly.
Allergies stink. Please if you know anyone that has a child or family member with food allergies, dont' give them the "that is no big deal look" understand that this is life changing. This is stressful. It means always being on high alert all the time, everywhere. I think of people who just take their kids out to dinner order off a menu, eat and enjoy. I feel like I can't even wrap my brain around that. How does that work? I see kids eat pizza and I have anxiety attacks. How does that work? It almost seems like being a Mom of Aiden has become the way of life that I actually don't understand or remember other ways of life. One of my allergy friends just got a PEANUT in the mail. A whole peanut from a mortgage company, advertising. Another mom joked it was like sending ANTHRAX in the mail to them. I guess not a joke. A reality.
OK so anyway. If you want to do this Mom a favor today, please be an organ donor, be a blood donor, and last but not least if you know someone with life threatening allergies or has a child with life threatening ... know this. They may need a hug...cause some days it just sucks. Most days are fine.. but every so often.. a very bad day happens.
After writing all of that I must make one thing very clear. Today I am in fervent prayer for my "liver friends". Things have been a mess for us liver families. Isaac is in very serious condition, poor little Annika is going home just to be home for the first time in forever. They know very well that they will be headed back immediately, just to be located near their hospital.. just 'in case'. The little Natalie Bear oh how she just has to keep on truckin. Doing their best to just run the marathon. And now one of my best friends in the world has to learn to stop running the marathon of sickness and now is starting up the marathon of grief, as their daughter Haley is at rest in Heaven. Oh there are more. Many more, kids waiting for livers, kid's just getting diagnosed with PTLD (post transplant lymphoma), kid's recovering from transplant.
So in the end, I just thank God for our blessings, ask for the courage for us to keep running OUR marathon, and ask for healing for all of those who need it so desperately.
Thank you for reading, and checking in on our boy. Keep posted, I am gonna post pics of Mason's dedication soon! (the good parts lol) ...
Blessings,
Lisa
Sunday, February 12, 2006 8:24AM CST
***URGENT!***
PLEASE PRAY FOR ISAAC AS HE HAS JUST BEEN SENT TO THE ICU. ISAAC IS A WONDERFUL LITTLE BOY THAT DESERVES TO BE HOME NOT SICK AND SUFFERING. OH JUST PRAY FOR THIS FAMILY AS THEY HAVE SEEN HORRORS I CAN'T IMAGINE. www.caringbridge.org/sc/isaacsjournal
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Friday 10th update:
Today is a tad different. I am going to post a letter I am about to send to my family and friends. Please take a moment to read this letter, the topic is oh so important to me, Thank you!!!
Dear Family and friends:
As some/most of you know, I and another mother, Cheryl Vincent, started an organization called Miracle Mail. Several years ago we both felt it was placed on our heart to send care packages to sick children. Some were children waiting for organs, some where children with cancer, and yes some were children in hospice ready to pass to Heaven. After several years of my kitchen table being littered with boxes, and toys, and trinkets, I felt an even harder push for Miracle Mail this past year. Somehow on a tight budget, Joey and I were always finding the means to fill the boxes and send them. I feel God just made it happen, as the most important item in each box was the scripture and/or a Bible we would send.
God just works everything out perfectly in His time. Last year Aiden became very ill. So many of my friends and even strangers wanted to help us. They offered to bring meals, or do whatever they could. It was humbling and precious. But I had only one request, please help with Miracle Mail. After spending that time in the hospital it was just like God had thumped me over the head and said.. GET TO WORK!
Without any prompting my MOMS club did a toy/Miracle Mail drive. It was SO wonderful!! Supplying us with so many items that were essential! It made it possible for me to send out more packages just in time, for the long list of kids that started being linked my way. Things were getting exciting cause people were just wanting to help so much.
We had only one more request/need. For the past few years my friend, Cheryl and I had been seeking desperately for someone to help us go into an official non-for-profit. It seemed like the Lord just shut that door a million times. I sent out emails asking people to help, even to people who I know had the ability and it wasn't happening. I was confused at first but always trusted that it was not the right timing. Cheryl and I just kept on plugging away making our boxes and sending them, knowing God had big things ahead for us.
The worst day of our lives.
Cheryl's beautiful daughter, Haley, passed away suddenly on October 2, 2005. She was gone. Life forever was changed for one half of this foundation. I cannot possibly tell anyone about Haley Vincent in a page or two. She was a gift from God. She had a missionaries heart and lived to touch others. She was just as much a part of Miracle mail as was Cheryl and I...after all she was 1/2 of the inspiration that started it all. Aiden and Haley.
It wasn't until now that I can see an amazing plan unfold. At Haley's side, as she was passing from Earth to Heaven, Haley's parents promised her that they would HONOR Haley for the rest of their lives. They decided to create a foundation, to carry on what Haley started. Spreading cheer and God's word to others. They weren't sure what the foundation would be like, what it would do, but they knew God would tell them when the time was right.
Last month, as a grieving Cheryl and I spoke, she said that they had a vision of the "Haley Vincent Foundation" being like a well oiled version of Miracle Mail. And now the pieces began to come together. The 501(c)3 that we had been seeking for almost 3 years was ready and in place. Tax attorneys, accountants, and a board of trustees at the Vincent family Church helped outline how The Haley Vincent Foundation could happen. The time it takes to run such an organization was also sadly now available for one of us. But the vision and the goals have become SO clear. And now I see why this all happened this way.
3 1/2 years ago my relationship began with Cheryl, in a hospital room with Aiden. She, Bruce, and Haley simply brought us a care package before ever knowing who we were. I was changed forever, and now 3 1/2 years later, Miracle Mail will now have its home in the Haley Vincent Foundation. It all seems so clear. The Lord knew that Haley would be called home, and He knew he was going to CALL Haley's parents to something great as well.
I am humbled to be part of something that seems so breathed by God. I am honored but also do not take this responsibility lightly. I am still sending packages from my home, but soon Miracle Mail will be no longer. Instead The Haley Vincent Foundation will be in effect, doing even greater things than our tiny little back room (or dining room table) organization could ever do.
Please pray for all of us involved. Pray for Cheryl and I, as we sadly look back on this plan that has unfolded, and now seeing the missing link to make it what GOD wanted. Please pray that if you are so inclined that you will find a way to help this foundation honor a memory of a beautiful little girl, and bring smiles to the faces of so many who need it. This is only my introduction on this topic. There will be more discussions and calls for help. But for now, just pray that God will lead us with clear vision. Add thank you for reading about this very important part of my life.
Lisa
Monday, February 6, 2006 7:07 AM CST
Well last week was a good week! a great week! I saw less of the red rashes than the few weeks before, which made me very happy. I might be pulling strawberry from his diet.. we will see. Aiden had several really fun play dates last week! One was so fun I didn't even take pictures. Although now I wish i had them. Oh well... Aiden went to the park with his friend Spencer and I did get some cute shots of them playing in the sand:
Also here is them posing.... This is the closest they would sit together. LOL SO silly!
And then looking over the seawall at the hermit crabs and fishies...
Last week was so much fun! But the highlight of the week but probably of my HISTORY with Aiden and his allergies was yesterday. Yesterday his friend celebrated her 4th Birthday. Before we went, I sat Aiden down and talked to him. (it was SOOO great that he is getting older and we can really talk about this stuff)
"Aiden we are going to go to your friend's house for her birthday party. There will be food and cake you can NOT eat. But you can sing happy Birthday and play with all of your friends! If that makes you feel sad, please tell Mommy. "
Aiden says, "OK MOMMY!" I think to myself.. well ok he knows I warned him and lets see what happens. I gave him a choice of special treats to choose from instead of eating cake, and he chose a fruit roll up (healthy choice huh?) and cookie dippers.
The party was SO much fun. Totally up our alley. The Birthday girl was so cute and it was time to sit down and eat the cake. Aiden gets into his seat at the end of the table. And while the cake is being served, A big fat piece is set in front of him. Before I could tackle the cake or child (which ever would have been fine) Aiden says this:
"Umm excuse me, I am allergic to that. I can't have cake. It will make me puke and go to the hospital" (followed by a puking gagging sound..not exactly appropriate for table time) and he continued on eating his fruit rollup happily and whole heartedly licking his fingers like the other kids...
AT that moment...I sat stunned. shocked. It took ALL I had to choke back the tears. It finally happened. In one single moment the tunnel opened up.. and I saw the light. Oh Gosh. I know that for other people maybe it is a ballet recitle of a homerun in baseball, but for me... THAT WAS THE MOMENT OF VICTORY I had prayed for. Of course it woudld've been totally inappropriate for me to dance on the tables and shout HALLELUIA! so I just kept it to myself.. maybe whispered something to my friend who was also watching (also ready to tackle the cake..)
It was like with all the weight I carry on my shoulders, a little tiny pebble came off. And with that the HOPES of more and more pebbles and rocks coming off as he learns and grows older.
OK so I am just on cloud nine. Not only was that Birthday party just one of the most warm and fun parties I have ever attended, it was a big day for us as well. I just am so thankful for my friends who care so deeply and do so much to keep him safe.
Ok I better quit now... I am just crying again. Oh if I could only tell you how it feels to see him express it. For him to "get it"... I know he has never cared before when others eat things in front of him (excluding a few rare moemnts) and he has never been tempted to try something he knows isn't safe. But this was just different. HE kept himself safe. OK boo hooo hooo happy tears.
Please keep praying for our "liver kids:"
Isaac and Natalie-bear and Annika
Also little Malcom is having his surgery today!
God bless and have a WONDERFUL WEEK!!!!
Lisa
Thursday 2, 2006 9:19 AM CST
**UPDATE: I need to add an URGENT prayer request for Natalie It has been a long time since I have had her on my prayer request list, and I although I want to always pray for her, I want her better ASAP and off. She woke up with a HIGH HIGH bilirubin and is immediatly admitted into the hospital. This is very shocking and honestly I don't even know what it could be. So just PRAY for her to be healed. Oh I love this family so much. God bless!
UPDATE on Annika she is bleeding again. pray for them, I have her listed below as a praise report. I am still praising God for her, but she needs our prayers again.
*******************
Original Update from Wednesday
Hi all! Things are well here. Mason has rolled over for the first time, SO CUTE! and I think he might be cutting teeth too! Aiden didn't get his first tooth till he was almost 14 months. I think I might start calling Mason Chompers.. he is always chewing. hee hee
I dont' want to make a big deal out of it, (with so many people who have such serious problems,) but Joey and I have a tad bit of concern for Aiden. Joey and I can't shake the feeling that something may be "brewing". I am not sure what is going on. We have had some hives again, welts, rashes, and some other weird things going on with his skin. But when I say rashes it isn't like something you can feel.. like that kind of rash, it is like a red rash IN the skin.
Sometimes it looks like red prickles. (same thing he used to get all summer long) But just on his cheeks or weird spots. Backs of arms...I dunno.. nothing too obvious, but enough to raise an eyebrow by his Mommy and Daddy. I went out Sunday night to a friend's house to just sit and chat, when I came home Joey was flustered and said he thought Aiden was having a reaction. He was coughing and gagging again. And the day before that, Aiden was having some kind of reaction that after benedrylling him I had to actually sit there and wonder, am I supposed to epi him? Suddenlly forgetting what the symptoms for anaphylaxis were. Can you believe that!? that sounds pretty ridiculous. I guess fear can confuse you sometimes. He was fine, his O2 sats were good. 95 and 96 although he was a tad wheezy.
Basically though, Aiden is doing wonderful over all. He is 1000X less reactive than before. I guess now I bring this up cause things have been so good; this is the first time we have been able to see a possible "warning sign" for a flare. Hopefully it will simmer down and be nothing. I can't help but remember that this time last year was when Aiden started going bizerk. The circus, lollipops, airfresheners, oh my gosh the list goes on and on...
## EXCITING NEWS ON THE HOME FRONT!
I am thrilled (am I?) to say that Aiden has had his FIRST REAL HAIR CUT!!! Can you believe that?! Yes almost 4 years old.. it is time to cut the mop. I have one time in the past trimmed his neck line but never his little cotton ball puffy hair. Boo hooo... It was so good though. He was scared at first but once he saw there was the striped pole thingy and the real Barber shop chairs like on Blues Clues it all went well.
He was pretty leary at first, thinking it was gonna be some kind of boo boo, he started chewing his fingers (a new gross thing he has started..not top of the list for immunesupressed patients but oh well) 
After we attemtped the cut on Daddy's Lap, that didn't work.
He climbed in my lap and he let them cut. At first not trusting them that it wasn't some kind of elaborate scheme to give him a boo boo, but then he settled in as the Barber shaved and cut away with a speed that made ME nervous. I didn't get the oppertunity to say, "can you cut a preppy boy cut? or maybe a surfer cut?" It was more like.. "OH MY GOSH HE IS SITTING...JUST CUT CUT CUT!!" haha
So, he looks so different. SO different to me. All that fine wipsy baby hair, is gone. Boo hoo, And suprisingly enough he actually has some thick white hair under it.
The first few minutes I was in shock, I was staring at him and Joey finally said, "Lisa, turn around you are gonna freak him out!" and we both laughed.. ok yes.. silly Mommy..get a grip.
Anyway now I am having fun with it, he looks so grown up (AT LEAST 4 years old HAHAHA) And when I gave him his bath last night I had fun combing it. Yes I am sure all my friend's with little girls are thinking I am a little over the top, but it is FUN! 
OK well that is it for now. Things are great here, we are happy and feeling blessed.
Praise report: Annika is out of the hospital and doing good! What a miracle we have witnessed. I pray that she does well and can stay out. No more bleeding and no more complications.
Prayer request: Another liver family just lost their sweet 6 year old suddenly. Please pray for this family. This was a child that was doing perfect with never a complication post transplant. I can't even imagine their horror.
Prayer request: Continue to pray for Isaac , he is one tough kid. (and a fellow train and spongebob lover too!).. I know Isaac will win this battle!
Prayer request: Baby Malcom is soon to have surgery to maybe remove his trach tube. He is one of those AMAZING tiny mini preemie babies that has just done so well, against ALL ODDS! So pray for him, as well.
Thank you for checking in on Aiden,
Love to you all!
Lisa, Joey, Aiden, and Mason
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Tuesday, January 24, 2006 9:45 AM CST
4 months old and 14 lbs
This is the weight and age of which Aiden stopped growing, and this is weight and age of his brother Mason today
My sweet Aiden
My sweet Mason
***************
Last time I felt this nostalgic was when Mason turned 6 weeks... (read journal history if you missed that post partum moment. ha!).. the same age Aiden was diagnosed. DO not fear, I am not sitting around every day staring at Mason sad for Aiden. On the contrary! I am blissfully reminded just how blessed I am with TWO perfectly wonderful children. Both with their own paths, and with their own wonderful histories. Just know today is what it is.. a DAY, a day of reflection. A joyous day of reflection... OK with that stated.. continue on. :-D
Those who know Aiden now in the physical, know he is a big sturdy solid boy. He has caught up and looks great! he is SOO GREAT! But there is those thoughts I have every once in a while when Mason hits a milestone that Aiden also had hit in such a different way.
some pics of Aiden:
here is Aiden smiling and happy.. his spleen is enlarging and telling us that he is getting sick
first time at the beach.. and first day we saw him internally bleeding he was 4 months old
*****
So now I excitedly anticipate the normal growth of Mason. The normal-ness of weight gain and health.
I am asked OFTEN how it is having a second child. (mainly mom's who are pregnant with their second or planning it) If it is people who I don't know well, I just smile and tell them "it is fun and wonderful." just not enough time to tell them HOW wonderful. Of course, I would probably scare them off by the tears of joy and descriptive details of why it is so good....I tend to run at the mouth (no comments please)
Lately though a few of my friends with "liver kids" are pregnant with #2 or thinking about trying for another after their last one was/is sick. I have a different answer for them. One saved for this journal, a place where mainly the people who read this "get it cause they lived it" .. So this I write to you My fellow 'hospital warriors":
Prepare yourselves:
You will have a lot more free time.
Below is my equation I created to explain how more time is allotted:
TAKE THE TIME YOU SPENT WITH YOUR SICK CHILD AND - MINUS THE FOLLOWING::
Minus the time that it took to give meds on crazy med schedules
Minus running to the ONE and only pharmacy that knows how to compound these bizarre meds that no one has ever heard of.
minus the fever checks (which my house translated to FINDING the thermometer first)
Minus all the pediatrician visits, GI docs, surgeons, clinics, etc.... (yes it feels like home but say good bye.. you won't really need them either)
minus the hours on-hold with insurance companies
minus FIGHTING those same insurance companies
minus being disconnected from insurance companies and starting over
minus the paper work! filling out tons of paper work.. I swear WHY CAN"T WE JUST DO IT ONCE?
Minus logging labs (yes us hospital moms are weirdo's, we can tell you our kid's most unique qualties .. like MY SON'S Ggt is:.....bla bla bla.. Nope no Ggt is not run on healthy kids)
Minus getting the mail and having to open tons of EOB's
Minus the hours of research you have to do online cause you know NOBODY that has a child like yours.. and I still have never met one randomly ever! (not counting the ones from my online support group)
Minus the obvious: Hospital time: in patient out patient.
minus flushing IV's and do weekly dressing changes (or once again in my house every few days cause my baby managed to get himself NASTY all the time)
Minus holding your child cajoiling it to eat.. one ouce. ONE LITTLE OUNCE!!!
Then minus the time it takes to go to hosital for fluids and ng tubes, that darn one ounce wasn't enough anyway
Minus the weird looks, the questions about jaundice and color. the people who tell you, "my cousin'sbrother's sister's neighbor had a somthing wrong with his liver, er um was it a kidney..well he is fine now."
Minus the pointless argueing and the much needed crying.
*******
I am sure there is more, but you get the point.
It is easy.
It is wonderful.
It is WEIRD,
It is unusual.
It is new.
It is something I have had to learn to do.
Just sit.
Just hug.
Just cuddle.
Just be his mommy.
Yes yet another milestone has come today and I am sentimental. 4 months and 14 lbs.
Every day on this site, I list the blessings of what it is like to have a child with illness. Every day I tell everyone I COULDN'T BE HAPPIER BEING THE MOMMY OF AIDEN! And I mean it!!! OH MAN, DO IT MEAN IT!
All the times listed above were precious and dear to me (uhh excluding the insurance ones) believe or not even the bad ones, cause it reminds me how lucky and blessed and how healthy and wonderful he is. It all helped create a type of bond that is none like I have ever felt between me and my son... but for TODAY.. a milestone day... I will say:
Having a healthy baby sure is easy.
Love
Lisa
feeling like the most blessed mommy in the world
Wednesday, January 18, 2006 11:41 AM CST
Best Big Girl Friend
So how long am I going to be Aiden's "Best big girlfriend?" This meaning BEST (a true honor) BIG (duh) Girl (which I am) and his FRIEND. He tells me everyday that I am his best friend. Although I know he is very fickle. Almost ALL his friends at any given point of the day are his best friends. Rolex the dog, Daddy, and even this Manatee card he got in the mail from the "Make a Child Smile" organization. He sat there kissing that card/picture of that manatee calling it his best friend. But I digress. Today I am his 'best big girlfriend'. And it makes my heart soar. Today is one of those lazy days. You know the ones, where I am SUPPOSED to be cleaning and picking up trains and toys. But it feels like a snuggle day to me. I got my best PJ's out (aka Joey's PJ's), popped popcorn, and am relishing the fact I am my oldest son's "best girlfriend".... it is one of those days I just whisper up to Heaven and say, "Thank you God for our donor family, and every day we have together."
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Joey's new job is great! I am in Heaven. I get to see my husband when the sun is out! And then there was Monday. MLK day. Joey got off of work, as most all State employees do. We took advantage of a day off of work, that wasn't used for a hospital stay or whatever we used to hoard them for in the past. Instead we went to Busch Gardens!
(this picture is the closest I could get to him sitting still! haha)
It was so much fun! Of course as I have journaled here in the past, Aiden pretty much B-lines for the trains and we sit and ride them for hours. We saw some animals and took some pictures. 
(look at those Gators ... uhhh is that a Bulldog in their mouth? sorry...SEC football humor)
I saw this boar that resembles how I am feeling today ... fat and lazy. :-)
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So things are good here in the Hawk house. Still dealing with some higher Prograf levels, but he is doing so well. It has been our longest stint in almost a year without an anaphylaxis. Going on 2 months. a real miracle! Oh I pray he is heading for remission from IA. I pray that we can keep this up. I don't care what meds he has to be on, they are working and they are great!
Called about Aiden starting his first season of T-Ball, the league I spoke to told me they weren't able to do his age group this spring.. but then the dreaded question.
"Umm here is a weird question for you. They don't sell peanuts at the games do they?" I mumble
"Yes! they do!" replies the woman with an excited voice, "Cody's Steakhouse donated HUGE bags of peanuts in the shell to each game! They all have so much fun cracking the shells and pretending they are at a major league game!"
Oh man..."well the shells and peanuts don't actually get ON the feild do they?" getting desperate.
"Uhhhhh...." getting the sense I wasn't nearly as excited as she was, " Uhhhh....well peanuts DO get everywhere uhhhhhhh"
"Oh well,.. thanks for letting me know. It is just that my son....well nevermind thanks, and we will call back in the fall." I hang up. and just feel sad.
Oh well.... things are good and we are happy. T-ball won't define us and neither will his allergies. (although this kid can knock a ball over any fence you point him at with out a T) oh well.
In other news: Aiden is still one of the featured kids for the www.makeachildsmile.org foundation. Aiden so far to day has recieved 132 letters from 35 states and three countries! (Wisconsin is in the lead thanks to a brownie troup) It is his favorite thing in the world to go to the post office and open his po box. He kisses some of the letter and some of them include stickers or little things like that. He loves it! It has brought so much joy to all of our lives and it just amazes me how many people care and pray for people they have never met.
I also started a Bible Study last night... Believing God. A Beth Moore Study. (my third)... I already am so excited about getting in the Word and getting a closer relationship with God. If anyone has done this study, sign Aiden's guestbook I would love to hear from you.
Please keep our friends in your prayers as always:
Isaac, he has still several weeks of his chemo regimen and his hair is starting to fall out. Pray this chemo works and that they won't have to continue on with more chemo and ultimatly a bone marrow transplant. PRAY FOR HEALING!
we are so blessed with good health right now. If you would just take a second and sign his guestbook it would mean so much to them.
Thank you for caring and checking in on us
God bless!!!!
The Hawk family
Joey and Lisa pictured below:
Saturday, January 14, 2006 10:52 AM CST
We finally got labs drawn on Aiden.. my procrastination worked. I held off actually for another several days and got his labs drawn. Problem being, when I was finally ready to get labs... a new year has started and no authorizations have been requested for labs. Yuck. So after "dealing" with my insurance company (hopefully for the last time since our new PPO policy should be in effect) we finally got it authrorized.
Aiden had gone to bed tuesday night with a headache. More like: Playing playing playing... STOP "MOMMY!!!! MY HEAD OWWWWW OWWWW OWWW OWWW" grabing his head screaming....STOP.. Playing playing playing playing....
A terrible night of sleep, and then wakes with one more weird head ache. He said he was itching from head to toe, I put him in the bath. No sign of anything except a lacy type modeling of his skin. Then I leave, get labs and off to the doctor we go. CBC came back fine except his platelets completely wiped out.. OH MY GOSH! come to find out it was just clumped and a lab error. Phew! All other labs were lovely. Ggt 8, ALT and AST 18 and 30, bili 0.2, just perfect. But prograf came back at 15. It actually still took me a long time to realize "OH the head ache! it was the prograf."
After running around like a maniac he explains to me: "Mommy I feel shakey and wild". Yup prograf. I thought that was a good way to describe him when his prograf is high. Needless to say he is doing great, and the meds are a simple fix. As far as the allergies and anaphylaxes we are doing AWESOME. Only had unexplained hives a few times in a MONTH. The increased steriods are awesome. Our "neccesary evil", isn't looking so evil, it is looking more like "miraculous"!!!!
Well it is that time again! The American Liver Foundation has matched a runner to Aiden for the Boston Marathon! This is a fantastic program that is done every year in order to help raise funds to find the cure for liver diseases! Specifically it could help find a cure for Biliary Atresia! As you all probably know, Biliary Atresia is a very rare disease (only about 250 children a year are born in the United States each year with BA) that, at this point, has no known cause. They are coming closer to what they think is causing this disease, and every step closer we get... the closer we are to maybe fnding a cure. Oh and what a day that would be! Although it is one of the rarer pediatric liver diseases, it is the most common reason for liver transplant. The ONLY way to actually "cure" our kids of this disease at this point is to actually get them new healthy organs. And obviously transplantation is not the "cure" we are hoping for since it also has it's life long complications and dangers. So a real cure would be the MIRACLE so many are praying for!!
So this year Aiden's runner, Alyssa, has a goal of raising $5000 for this cause. I want to include part of her fundraising letter below. If you are interested in donating, info will be at the bottom.:
Hello!
As many of you know, I will be running the Boston Marathon on April 17, 2006. It will be my second marathon, but the first with real meaning, as I will pounding the pavement to help put an end to liver disease with the American Liver Foundation's Run for Research team. The mission of the American Liver Foundation is to prevent, treat and cure hepatitis and other liver diseases through research, education and advocacy on behalf of those at risk of or affected by liver disease.
Many people believe that most liver disease is caused by excessive consumption of alcohol or that most victims of liver disease are alcoholics. While it is true that alcohol is one of the many causes of liver disease, there are more than 100 types of liver disease that affect both adults and children. In fact, more 25 million Americans are or have been affected by it and over 2,500 children are diagnosed with liver disease every year.
My race this year will be dedicated to my liver disease patient-match, Aiden. . Aiden was born with Biliary Atresia, a rare liver disease that affects young infants. He received a liver transplant on December 21, 2002 and will celebrate his 4th birthday on April 19, 2006. The cause of Biliary Atresia is unknown and thus research is the key that will unlock this mystery.
If you are in a position to help me and the ALF financially, please consider sponsoring my marathon run and contributing toward my goal of $5,000. No donation is too small! If you cannot donate at this time, please consider organ donation and keep me and those who suffer from liver disease in your thoughts for all 26.2 miles on April 17, 2006!.
Thank you so much for your support!
Running for Research,
Alyssa
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YAY! so when the race gets closer I will update you all with more. email me if you have any questions. (Rolexh@aol.com) I am really excited and just proud that we are play a small role in such a cool event. It isn't exactly like I would be able to run 26.2 miles. (Lets get real, walking to my car I get winded.) But surely doesn't take away from how impressed I am with those that can. SO THANK YOU ALYSSA!
If you would like to send a check, please make it payable to American Liver Foundation and send it to Aiden's PO box at :
ALF donation
C/O Aiden Hawk
PO box 7505
St. Petersburg, Fl 33734
Well I hope everyone has a wonderful week. I do ask that you continue to pray for the following children again this week.
Isaac is also very sick still. (liver transplant patient also) just started chemo and is going to be in the hospital for a long while. (sign his guestbook to make his smile!)
Annika is still in ICU. (a child with biliary Atresia, 2 liver transplants)
Savannah doing a little better but still needs our prayers, and also a note of encouragement! (liver transplant patient, waiting for her second liver)
I am also including some new pictures on Aiden's photo page of the family and stuff. I am off to play "hide" and seek with Aiden. He is just so silly. He always tells me where he is planning on hiding. And JUST IN CASE I can't find him (yeah right) he laughs and giggles EXTRA loud so I can hear him. Silly silly beans. He just told me:
"Mommy I am gonna hide under Mason's crib... you come and find me!"
OK silly boy. I will......
Lots of love and hugs!
Lisa, Joey, Aiden and Mason
Friday, January 6, 2006 7:42 AM CST
Happy New year!
Off to get lab drawn this morning. I hate doing it, even though he is totally awesome about it now. At least the last few months have been fantastic. No crying, just a brave face and a faith in his "magic cream". Pretty neat to see, but none the less I hate going. Usually coming up with every excuse in the book to not go. Today's excuse is the one I commonly don't like to use, but it is all I have left... I need to clean! Yes, I am willing to actually clean the house (GASP) instead of do this little blood draw that we do all the time. I swear labs draws have become more about me (and my little pauses in sanity,) than him sometimes. If only his resliancy was contagious. But the real truth is labs are harder to do when he is THIS healthy. I love living in "healthy world". I don't want to visit "sick world". I just want to stay here and enjoy, bask in the sun in healthy world. sounds weird, but it is just me, how I am. I hate hate hate lab draws. And for no good reason, it is "fun" for him. He gets to see his "friends" at the hospital, and then after the harmless 2 minutes is done, we usually have a "special mommy and Aiden day" (uh and Mason too). SO it is just me, as usual. Although I know my liver friends "get it" most feel the same way. Like i said ESPECIALLY when we are healthy.(go figure)
We had the MOST wonderful day at the park yesterday, Aiden just loves meeting new people. SO social. He thinks that everyone the park is interested in knowing him, and of course his baby brother. "EVERYONE! EVERYONE! HAVE YOU MET MY BABY BROTHER? THIS IS MASON GRADY HAWK! HE IS A BABY!!"
Yes Aiden, everyone has Met Mason. Maybe Aiden will work for a show like the Price is Right.. "C'MON ON DOWN FOLKS! I AM AIDEN HAWK AND I LOVE TO ANNOUNCE THINGS TO THE WORLD!" or more likely my friends and I think he will make is calling in stand up comedy. Not the talking kind of comedy though, more physical humor like Jim Carry. Aiden is already walking into walls for laughs. Bonking his head.. it always makes the girls giggle. And there I sit, still confused.. "God you are SURE you said 2 boys? cause I really understand girls..I totally get GIRLS".. but blessed I am with my two boys, well techinally 6 boys counting the husband, dog, cat, and fish.
So a new year has begun. I offically have a few things I want to get on the record.
1) NO HOSPITAL ADMITANCES
2) NO MORE ANAPHYLAXISES
3) CALM CALM CALM
How does that sound? Well heck, the year 2004 after he had sepsis on the night of New years eve, I declared: THAT IS IT AIDEN, NO MORE THIS WHOLE YEAR... and it worked! I loved that 2004 year it was great. Just some tonsils out... well and of course the allergy thing started then, but no real drama until 2005. So I am making it official, I would like to request the above mentioned items. (1-3) and then Thank the Lord in advanced for whatever he has got in store for us.
We have exciting news! Aiden was chosen to be the Make a Child Smile, child of the month. I request that you go look at the other children who are featured and send them a card. It is really precious. We have had 2 days of cards, and they made him SO happy. His favorite thing, is the "golden key" for the PO box. Pretty cool stuff. It is an amazing organization. We were honored to be chosen, and thankful for it. I am secretly hiding a few cards for Aiden for next admittance.. oh wait I need to review request number 1 above.. ok so I am holding it for some day where I know he will really need it. here is the URL: www.makeachildsmile.org
Prayer requests:
Aiden has some very sick friends right now, I want to request prayers for.
Annika is still in ICU. (a child with biliary Atresia, 2 liver transplants and now a horrible complication from transplantation) it has been a real nightmare. PLEASE PRAY.. we are very worried.
Isaac is also very very sick. He was born with another liver disease, and transplanted years back. He has had one of the toughest transplant roads I have ever seen. His parents are full of faith, grace, and are amazing. He is very sick and also in ICU
Savannah is very sick, I know very little details except she is also waiting for her second liver transplant and is in the ICU as well. Please pray for her.
Always Haley's family as well. It has been 3 months since she passed. Difficult beyond comprehension. In this three months, so much has happened, Haley would have been 12 years old, Halloween, Thanks giving, Christmas, New years, and a new house for the family. Their pain is not gone not even begun to lift. Please keep them in your prayers as they learn to cope with people who just don't understand (including myself). Please ask God to lift them from comments that people make, and give them a Peace that is above all of this world.
Thank you friends, for coming to Aiden's site. For loving him, and caring about him. Thank you for your prayers, I am faithful that this year will be a year of health and discovery. I am hoping that 2006 will lead us down roads we didn't know exsisted and that we begin to see his ideopathic anaphylaxis go into remission. I am excited about 2006. I can't wait to see what is in store for us. God Bless!
Wednesday, December 28, 2005 2:59 PM CST
Firstly since most of you come here to find out about how Aiden is doing I will start with a general health update. Aiden is GREAT! Period! No more cough. No more ear infection. His pink cheeks assure me his CBC would be looking just as good as it did before the bone marrow suppression. We will draw labs next week, but till then we are just thrilled with a healthy spurt. His hives have gone down tremendously.(still having a few mysterious hives but the increased steroids are defiantly helping in that regard.) He is doing better with his reflux at night, not as much gagging a coughing since the med change. His sleep is better once he falls asleep, but the steroids deprive him of that sleepy bedtime feeling. I am just thrilled with the turn of events. SO healthy healthy healthy! YAY!
OK so here has been what has been happening with the Hawk family.
December 21st was Aiden’s transplant anniversary. I hope you had an opportunity to read the past journal entries I wrote in 2002 (recently posted). But if not, to sum it all up. He was sick and now he is better! YAY… SO Wednesday was also the date of our Mom’s Club Christmas party, but with all of the foods that are unsafe we just could not attend. I planned as usual to sack out in my PJ’s all day, hang with Aiden, go down Nostalgia Lane, and just sit in the glory and the somberness of that day. (some of my friends call it being a hermit but it is a ritual none the less.) My friend Kelly had said she would bring Hannah by for Aiden to have a playmate, but convinced me it would be casual and nothing to worry about. SO I stay in the PJ’s.
DING DONG (well actually I don’t have a working doorbell but you get the picture) and there are two of my sweet friends and their precious children bearing gifts and food. SURPRISE! Ummm Uhhhh Ummm Uhhhhhh………. Now I get it. These sweet gals have planned this for sometime. They forfeited going to the Christmas Party and came over to share this precious day with us, knowing we couldn’t attend. I was delighted.and SHOCKED. (Did I mention shocked?) They all had he best time. Some other friend’s were going to join us, but unable to attend at the last minute due to a low-grade fever. (Ebbie one day we will see you!)
The kids played, we all laughed and it was so much fun. 
Aiden and Hannah
all three kids just doing their own thing
Swing to the sky!
Honestly I don’t handle surprise well..heck any kind of generous offering I usually clam up and freeze. It is so against my nature to just know how to accept that kind gift. I guess I usually sit in awe at people’s kindness. Humbled would be a good word to use. But later that night there were tears of happiness, in the privacy and safety of my room. Tears of relief that I have been SO blessed by so many friends and people who care truly, and deeply.
Later that night my parents, and our little family went to the park to set off the balloons in memory of the angel that donated their liver. The Gift of LIFE. It is a tradition we have done for three years, and it is so precious and tender. But unfortunalty the idea of letting three perfectly good balloons fly away to the sky for a three-year-old is more than he could handle.
“NO! I want them! I don’t want to let them go”
“But Aiden, we got you that awesome Sponge Bob balloon at the house! Let these go to the sky, and we can go home and play with your balloons.” I argued.
“No.” And the tears begin well…..
OK so what in the world? If the child who is the one we are celebrating is now about to cry in horror at the thought of the balloons going away, what is the point? So fine. Let’s just say our prayer to God, and we can go home. So after a few more catastrophes, like forgetting his new cool hat and seeing the ice cream truck drive by playing that ridiculous song (YES IN DECMEBER! Florida is just so weird), and then finally popping a balloon in the grass. We pile BACK in the van and go home.
“I WAS WRONG! I want to make the balloons go! I want them to Fly away! I WAS WRONG!” Hysterics in the back seat. We calm him down, take the balloons to the play set in the back yard, and ask him to let them go. 
“NO! I don’t want to!!!” He fakes like he is going to just enough for some pictures, buyt he can't get the nerve up to do it. He askes his Daddy to do it, and finally the balloons are floating above the trees into a darkened sky. It was beautiful, and I smiled hoping that all of the drama that comes from a three year old, all of that LIFE that pours from him, floated up there to show that baby that we are doing it. We are living, and loving it. Even the when things don’t go perfectly as planned.
Christmas Eve was a blast.
I finished a tad bit of shopping, and then we came home and prepared for Christmas Eve service at our Church. Aiden and Mason were SO cute. They dressed in matching sweaters, and sat through the singing in the pew next to us. Amazingly well behaved. I was actually shocked, thinking it must be another Christmas Miracle, when through the entire service not a peep came from Aiden’s mouth. He loved it, and hummed along to the familiar Christmas carols. Late that night Joey had been having frequent fires on his new “outdoor fireplace” and planned on one that night. We all got our snuggly clothes on sat by the fire and just had a blast. We cooked Turkey Hot dogs and on sticks in the fire and Aiden chanted over and over again;
“It is my dream come true. This is a REAL dream. I am so happy. I am the happiest ever.” 
I think he takes after his Daddy, the Eagle Scout (hee hee had to throw that in there). He loved it that night, and honestly it was a precious thing for all of us. We cuddled and hugged him, we could hear the sweet breathing of Mason on the Baby Monitor, and it just felt complete.
Christmas DAY!
Sleepy boy. With his sleepy eyes and messed up hair, Aiden strolled out of his room remembering what that day was. He walked over and saw the stockings, asked if Santa came. “Santa DID come! He ate your cookies and rice drink, and even left a note for you!” ( and no the note didn’t say, RICE DRINK IS GROSS! Haha) the eyes got wider, and he began to open presents. Mason lay there and cooed. Not knowing that this was his first Christmas, and that he even got visited from Santa.
(Sleepy eyed Aiden loves his Sponge Bob shoe laces)
No one told me how fun this age is. 3 and ¾ years old. Oh my goodness. Cute and funny and just a joy. He got his Thomas the Train FireHouse, and was just pretty much stopped at that point. It didn’t matter that other presents sat under the tree, he just couldn’t get enough of that fire station. Then His GodParents, Kitt and Matt sent him the Thomas the Train, Train wash. Oh geesh…. It was official; Christmas was the best day he had known.
We spent the afternoon at families. I double drugged him and bendrylled him before we went. One parent surrounded Aiden the entire time. The food was delicious and also EVERYWHERE. The family was pretty good about washing hands, and being careful. Joey and I had very little time to enjoy, we just prayed and hoped for no 911 or ambulance rides, and stalked him like crazy. He never once knew. He had the best time playing with cousins, and being around so many people. I of course watched as fingers held cookies, then touched a chair, or doorknob. I could see those deadly food proteins sitting there waiting for Aiden to touch, but it never happened. It was perfect. Some hives on the wrists, hands, and knees is all that happened.
So overall this has honeslty been one of the best Christmas’s ever. I can’t ever beat that year in 2002 when Aiden was given his Gift, but this is number 2. We are so greatful for all the wonderful moments we shared, and are going to share for New Years. Tomorrow we head out for Georgia. We will be going to Stay at Nana and Babu’s for New Years. We want to ask that you keep a few families in your prayers. Annika is still so sick and desperately needing healing. Also Tanner and Morgan who just got diagnosed with RSV! Both Preemies and one is a transplant patient. Havalah is recovering from major surgery, and of course Angel Haley’s family all need your love and prayers.
God Bless and may your New Year be a “NEW year” full of Good Health, Love, and Joy.
The Hawk Family
Saturday, December 24, 2005 8:25 AM CST
PART II
(in Honor of Aiden's 3 year transplant anniversary I am posting some of the old updates I have saved from when I posted them before I had Caring bridge. PART I is in the journal history)
Well in honor that it is Christmas Eve I am starting with December 24th 2002.... PART II is long.. but hang in there, please read it all if you have a chance, it is the "Story of US" and how we became this family.. with our Precious Aiden. I hope you enjoy and remember Jesus is the reason for the Season. The 'Prince of Peace' has been born! Praise Him!
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Hi everyone! Merry Christmas Eve from Aiden
Hi it is Lisa here,
A Christmas Miracle is happening. I am back at the guest house showering and getting Aiden's little books and toys ready for him for when he is awake. I had to go to Target because I have no clothes. Joey just grabed Aiden's stuff and ran to the airport. So here I am: no shower, no clothes, etc... Time to take care of me.
But I wanted to update you guys this time! I just saw Aiden. Now his bilirubin is normal. No toxins in his body! His amonia is finally back to normal! His fluid is decreasing, and he tried to open his eyes! I can not tell you what a fighter he is. He is fighting every second. He is still sedated and on morphine drip, but that boy is even trying to wake through it! The nurses keep saying Aiden is laughing at all of us, saying "you are gonna have to give me more if you wanna keep this boy down!" I believe it.
His liver enzymes are now decreasing and moving in the right direction. I am bawling my eyes out telling you this. MY SON WIL LIVE! MY SON WILL GROW AND PLAY AND HE IS GOING TO MAKE IT! I just know it. I was telling everyone at Target. "MY BABY GOT A LIVER FOR CHRISTMAS!!" they all thought I was nuts. HAHA
I am tired and need a shower and some good food. I am going to go back to the hospital shortly. My parents are with Aiden now. I love you and Aiden loves you. I am so hapy we are doing good. Of course we all know to be prepared. The dr.'s said this is a roller coaster and we need to keep the seat belts fastened. Go Aiden Go! I am the luckiest woman in the world, I am the mother to Aiden Hawk. ~~Lisa~~
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Dec. 24, 2002 06:37 PM
HE'S OFF THE VENTILATOR!!!!
Just talked to Lisa--he's off and breathing on his own! WOW--I'm just speechless!!! Tears of joy, and a great feeling of triumph is coursing through my veins at this moment--I know there are more obstacles out there but WE HAVE TURNED A CORNER!!
What a Christmas present for Lisa--she gets her baby boy back, awake and able to recognize and respond to her--it'll take dynamite to blast her away from him tonight!!Pray just as hard but also take a moment to thank Him for all the blessings He has already granted.(sara)
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Merry Christmas Eve
My Letter
Finally got my lap top up and running. (Lisa, Joey and Aiden are here sending you this update and Christmas message)
As we sit here in the ICU room, I can hear the beeps of his 17 monitors and pumps. There is a soft blow of oxygen pumping to my litle baby giving him the strength he needs. It is Christmas eve and we sit here looking at the Christmas gift we have hoped for, for months.
When I found out I was pregnant, I was so excited. I was to give Joey a son. I did not know My baby would have this amazing grin, and I didn't know he would be so special. I did know my hopes and dreams for him were endless.
When I went into labor, Aiden and I were a team. I went into the hospital on a Wednesday and Finally that stuborn perfect baby was born on the Friday. April 19th. I remember holding him and looking at his beautiful skin. He was like a china doll. SO white and rosy. By day two the tones changed and my baby was not going home. They told us that he had jaundice. Well I was sad that I was discharged and he wasn't, but I knew jaundice was not a big deal, so we just waited paitently for the now yellow baby to come home and turn back to that pink and white baby I held at birth. When the doctors came in and told us that he was sick, but they didn't know what it was, I was scared. Then I asked the question that still rings in my ears. I asked, "Could it be fatal?" Then our specialist looked at me and said yes. He said, "If Aiden has this rare disease his only chance at life will be from the gift of another. He will need a transplant to live. He probably won't make it past the first birthday with out it."
Joey and I cried. I remember crying and crying. I was so furious and angry I even tried to kick the wall with my foot. Not such a good idea since I had no shoes on. It was just too overwhelming. I was this new Mommy trying to fgure out breast feeding and how to COVER the pee pee with out getting sprayed. Instead they were telling me I was now the mommy of a child with special needs.
It seems like I never heard good news from that day forward. Joey and I kept hoping that he didn't have Biliary Atresia, but he did. He had it, and he was very sick. (notice I say HAD) I held my son through infections. I laughed as I watched in his first bath time. I was there when he had surgeries. I even held him in the back of a speeding ambulance with blood covering my sweet child.
Through all of this I shared with my friends online. I told them of our struggles and of our little victories. Aiden inspired people to comitt to organ donation and inspired people to have faith. Every step of the way I was able to share that first jar of carrots and the first time his PELD score was bumped to the top of the list. What a ride. I am so glad you have taken it with me.
But now here we are. Months have gone by while I waited to see that little new born with his pink and white skin. As a new mother I craved him. I needed to see that vision of health. I wanted him to come back to me. December 21st, 2002 my son was reborn. He was given a fresh new start. He is now my pink little angel all over again. He is finally home in his mommy's arms. He is back. I promised him I would get him healthy, and we did it. He is back. No more cholangitis. No more bleeds. No more disease, and no more talk of seeing his Lord in Heaven. No more talk of him leaving us too soon. My sweet mittle baby is now in my arms and he is the one I have loved though all of this, and the one I am now going to be blessed to have for the rest of my life.
Things are not easy right now. I have seen him drop in his oxygen twice now, He cries in pain, and he has a long road of recovery. His fight is changing, but also just begining. I know we are up to the challange. And our faith and love as a family is now stronger.
Last Christmas, I remember hoping that the child I carried would be blessed and have a full rich life. God gave me my Christmas wish. I want to hold him and take his pain from him. But like the other bumps and problems, this too shall pass.
God bless our donor family. May their special angel be sitting on the lap of Christ watching over my son with a smile. Thank you for my beautiful friends. Thank you for helping me fight this battle. The war is not over with. Let's hope for him to be awake and alert soon. Hope for no more pain, and pray for no rejection or infection.
I will kiss him and tell him How special everyone thinks he is. I will tell him all of the beautiful things you say. I will begin on page 1, telling him about his gift of life.
OHHHH wait.. DO I hear bells jingeling? Oh yes! I think I see Santa! Hey Santa, no need to come down this chimney, You gave us our gift. Our precious Aiden has come back to us.
XOXOX Merry Christmas.
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Aiden's new nickname (Kitt)
Well guys--it seems the nurses have nicknamed Aiden and given him a mascot. They call him "Lionheart" Some nurses have even gone so far as to bring him various stuffed lions. So Lisa and Joey are busily procuring lions for Aiden--we are going to surround him with these noble proud strong beasts. He is on the beginning of a long road to recovery...but HE IS ON THE ROAD!! As I read Lisa's earlier post, tears were just streaming down my face as I'm sure they were for many of you--what a perfect Christmas story--complete with miracle!
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posted Dec. 26, 2002 09:29
Improving with some bumps in the road
As the Dr.'s said it would be, this is not easy to watch him go through this. They had to take Aiden off most his pain meds. (don't even understand their resasoning!) I was furious yesterday. I had to watch the hardest day of my life. Poor Aiden. As some of you know his inscision was not able to be closed due to his intsestines swelling so much. SO he is left open in his abdomen. He has this thing called a Gortex. Kind of like a pad covering his insides. It is so awful to look at. Aiden is having some difficulty breathing. He picked up a lot of fluid after the two surgeries, and the fluid sort of stopped off in his lungs. So he his getting albuteral and breathing treatments. He hates it! He just fusses and tries to bat the mask away.
His swelling is down so much. He has lost 1.8 kilos in water weight. The surgeon said it is like me loosing 60lbs in water weight in one day! SO he looks like himself. We have been taking pictures like crazy! I have a pictures from almost every hour of the day since his surgery. Some are graphic and some are cute. His body is covered up it is just this sweet little face.
Last night Aiden's ng tube slipped down to his duodium (intestines spelling??) and it started to suck all of the bile out of him. I was scared because they had to do an x-ray and move it. But everything is fixed now. The new nurse this morning is awesome! first thing she did was call one of the criticle care doctors and got the okay for some more morphine and versed. So for the first time in 30 hours Aiden is resting comfortably. She just couldn't stand to watch the pain. Me neither.
We also got another ultrasound today. It showed excellent flow still. Aiden's new liver is kicking butt!!! It is awesome, He is fighting and making it a part of him. His bili is normal his liver functions are almost perfect! First time ever! I guess Aiden is goign to stay in the PICU for a few more days. When I tell everyone that he has moved to the floor that is the day to celebrate!!!! If anyone wants to visit, please feel free. I am bored right now, because I am letting Joey sleep. My family has gone home, my dad has surgery tomarrow. Aiden may not have visitors right now, but soon he can!!
Prayer requests: Please pray for him to have less pain. Please pray that he gets rid of the fluid in his lungs, please pray for me and my sanity. (I think I am loosing it slowly ) And pray for our donor family.
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posted Dec. 26, 2002 12:13 PM (Kitt)
Aiden is in his Daddy's arms!!!!!
Just talked to Lisa...JOEY IS HOLDING AIDEN IN HIS ARMS!!!!!!!That is the best pain medication he could EVER get!!! He is also down to ONLY 5 monitors--that's down from like 14 after surgery!! Lionheart is fighting his way back to us!! I promise to bring lots of memories back with me this weekend
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posted Dec. 26, 2002 12:26 PM
OK I asked many questions..
I asked Why? I asked my favorite doctor our GI and he gave me some reasons about the pain meds. He doesn't totally agree with the surgeon, so he wrote for some if we MUST have them. I have a peace of mind now.
So here is what he said:
Some reasons to cut or discontinue pain meds are 1) they might make you retain fluid, 2) they might mask problems such as neurotoxic reaction to the IV Prograf (immuno suprresent), 3) they might mask after effects of all the anesthesia, 4) they might skew the results of the kidney functions or other blood work...plus its important to make sure Aiden is alert and having proper reflexes and responses.
So I am still suffering watching him in pain, but I can reason with it better.
Good news!:
Aiden is eating and taking his first bottle. He is also being held by Daddy. I am so proud. I am just so proud. The surgeons came in and said that Aiden is doing "excellent!". I never expected less. My little Lion-heart. He even played a little bit. sort of banged on a stuffed animal lion the nurses bought him. Talk to you soon. Getting a shower and going to shave my legs! Yahooooo Joey, will appreciate that hahhaaa
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posted Dec. 27, 2002 10:27 AM (Sara)
Hey guys--just talked to Lisa--Aiden is going back into surgery--they want to see if they can fully close his incision He will be going in this afternoon so keep him in your thoughts! Am planning on heading to see them tonight or tomorrow morning--will make sure I post from there--am taking him a LION!
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posted Dec. 27, 2002 04:23 PM
He is doing great!
They were able to totaly close him up, his swelling had gone down enough. He has a severed lymphnode and it is leaking stuff (whatever lymphnodes leak) so the sutured it up as well. He has done wonderfully all day, and I have even better news!!His bili is now 1.0!! His AST is now 28 and ALT 56!!!! Perfect! His liver is wonderful.
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posted Dec. 28, 2002 10:06 AM
BAD News (sara)
Wanted to update you on Aiden--he had a bad night and had to be re-intubated--here's why. When they were able to completely close him up with yesterday's surgery, that left very little "extra" space in the little guy for swelling--and swell he did--soooooo that compromised his lungs--they were just barely inflating and basically he was struggling just to breathe--in Lisa's words--at one point he almost started to quit and his heart rate went down to around 50--FROM 170! Alarms were going off and everyone was rushing in.
So, the surgeons decided to re-intubate in a hurry, in order to help him breathe while his little body is fighting to get rid of all this blasted fluid! Some severed lymph nodes are leaking, his intestines are swollen from the surgery, his liver is swollen AND they discovered (after MUCH badgering from Lisa) that his Foley catheter wasn't working!! So it is out now and a Urologist will see him today.
Lisa and Joey are exhausted from last night and the hour's sleep they got--they are going to only peek in on Aiden so that he will get no stimulation as the little guy is already trying to fight the sedation! He just needed a breather and now he's back fighting!
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posted Dec. 28, 2002 12:20 PM
He is very weak.
Little Lion heart is taking a break. He is very weak. I am not sure what is happening with him, but he is just too tired right now. He can't open his eyes, and he can't even fight. The vent hopefully will give him this time to recharge his batteries and get that ROARRRR going.
My little wisp of a baby has lost so much weight. He is now down about 3 lbs in a three days!! He is so skinny. His fluid retention is primarily his tummy. I just want him use this time as a "cat" nap. My Little Lion heart has impressed all of the nurses with his will to fight.
Please pray. We are so worried. We love him so much. This is a set back. BUt still he is going to pull though with flying colors. His new liver is working wonderfully. Aiden must regain some strength. Thank you for the jingles. Keep em up. XOXOXO
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posted Dec. 28, 2002 05:31 PM
Hi everyone, he is still the same
Spoke to the surgeons and a bunch of doctors. He is about the same. Not realy interested in waking. He is on very very minimal sedation and pain meds, but he is not wanting to wake up. He is responsive to the neurological tests so his brain is fine, according to the docs. He is just exhausted.
I just know that my little lion heart needs his rest to come back fighting. Little Aiden looks so peaceful. He is like and angel. Every once in a while I will be singing to him and he will suck his little lips like he has a binky. So sweet. He is just dreaming. Maybe playing in his dreams with his angel donor from Heaven.
They are giving him nutrition through his ng tube and through his veins (TPN). Keep jingeling. Thank you so much anyway, thank you for praying just wanted to update again. we are much beter rested. Devil can't get us down for long! I am going to support Aiden and remind HIM how special he is so he begins to fight back! Just watch he will, I know it!!
here is the link for Aiden's story in St. Petersburg Times
Here is Aiden's story:
http://www.sptimes.com/2002/12/29/SouthPinellas/Tiny_donor__giant_gif.shtml
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posted Dec. 30, 2002 03:32 AM
New hurdle--COLLAPSED LUNG
Little Lionheart has a collapsed lung His heart rate has been around 180 even with sedation but his blood pressure remains good. His left lung is collapsed--they are trying to get him to dislodge some mucous plugs (or as an utterly exhausted Lisa calls them "booger plugs"--we had quite a moment of hilarity over that one) The did a culture and we will know tomorrow if he has developed pneumonia or not. He is running between 99.5 and 101.5 temp. Just before she called me, Lisa and Joey were in the room when suddenly every alarm went off and Aiden's heart rate plummeted from 180 to 20!! They were terrified--they kept hearing the nurses and doctors yelling about Aiden being "unresponsive" until they finally got him stabilized. I can only imagine the terror and helplessness they felt.
Another issue is that he can no longer take even minimal nutrition through his stomach. They tried just 5ml over an hours time (about a tablespoon) and he just vomits it back up--anything that goes to his stomach is vomited back up. He has not had a bowel movement in 2 days now.
Please pray that we get these issues diagnosed and treated quickly. I have made Lisa promise to get one of the doctor's to script her some sleeping pills so that she and Joey can sleep when the opportunity arises. She was exhausted when she callled at about 2:45am but was too wired to sleep. Please also pray for Lisa and Joey to catch sleep where and when they can. We need your prayers now more than ever! Goodnight for now.
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posted Dec. 30, 2002 11:13 AM
Still Struggling
Aiden is very swollen this morning. On a positive note, he has had a poopy diaper but still no urine output. They have put the catheter back in and we are waiting for the cultures to come back. The big concern is a bacterial infection and pneumonia. An infection is actually more deadly than rejection for an immune suppressed baby.
He also needs to be transfused again and Joey is trying to donate blood right now. The biggest hurdle is tring to figure out what is causing all of this--once we know what it it, they can treat it agressively.
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posted Dec. 30, 2002 11:23 AM
Doing poorly, but we are praying for a speedy recovery
I have only a few seconds to post to you all but I want to thank you for praying and let you know what we have going on:
1) collapsed lung. His entire left lung is whited out on the Xray. He has some junk in his lungs, and they are doing all the albuteral, suction and CMP treatments on him. They have sent out for a culture on his lungs, in fear of pnemonia. If he has Pneumonia we will be dealing with a very serious situation. Right now we are treating him for pnemonia as if he has it, and if they find he doesn't they will stop those antibiotics and treat whatever the infection is.
2) He has some type of infection. His WBC count is VERY high. He is now HUGE puffy and swollen. In about 5 hours he gained almost 2 lbs in fluid. ???!!!!! We are not sure why. Many tests are being done. He is back on Lasix and albumin.
3) He is getting a blood transfusion. They are getting a bank set up so Joey can donate.
4) He was running a temp, but that is gone for now. His liver numbers are great. BUt that may change. They are checking for viruses etc... When it comes to transplants, rejection vs infection, you always avoid the infection.
I am scared. I want answers, but the team, hospital, staff etc.. is working on it. I trust them. I just KNOW he will pull through!!
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posted Dec. 31, 2002 06:13 PM
Well, he is about the same but with some improvements.
We also have one peice of good news! Here it is. When they took him down to CT scan they went to look at the fluid and see what it looked like. If they were able to find a pocket that was accessible for a draw they would draw some out and send it to pathology. That could tell us more about what is happening. well they took him down there and they trid to draw some. It wouldn' come. Then he tried a second time. It wouldn't stop soming. They took off 330CC's of fluid. That is like 3 pints.(?I think)
It wasn't Blood from a bad bleed, it wasn't bile from a leak. It was benign Eventually it will go away.
I am in such a crazy hurry to get back to Aiden I am typing so fast. He is about the same sympotmatically wise. He is still needing major assistance breathing and went into respitory failure a bunch of times, even on a ventilator. It is SO hard to watch. All the alarms go off and they all rush in.. they have to bag him to breath for him. It is horrifying.
I KNOW he will be okay. I know he will pull though. He is looking a little better to me today. (maybe just the Mommy instinct again)Please pray for no more respitory failures. He needs to stay strong. Love you
~~~~~~~~~~~~~
posted Dec. 31, 2002 10:21 PM
It is 11:10
I was suprised by Kitt and Matt tonight. They baked us lasagna, brought Italian bread, chocolate cake, sparkling grape juice (where's the good stuff??), plates, cookies, silverware, salad...Mine and Joey's own picnic for new years. Thanks so much Kitt and Matt.
OKay just for those who keep updated frequently, It is 11:10 New Years Eve, and Aiden is still doing perfectly. He has not had one respitory failure yet. No codes. At least this evening) But night time is when it happens. SO keep your fingers and toes crossed. It looks like we may have a smoother ride tonight. (knocking on wood right now)By the way, Aiden is resting MUCH more comfortably now that they drained so much. Phew! It makes me feel better.
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posted Jan. 01, 2003 09:31 AM
Quiet in the PICU
Last night our little cub slept beautifully. The first night in 4 days (that sounds weird) Aiden slept peacefully and did not have to be bagged or have any alarms go off, or sounds, or nurses rushing in. I slept for 4 hours!! Joey too!!
Aiden has opened his eyes every so often. I know he is sad. He even had a tear come out.I can't wait to get him off the vent, and squeeze him!!!! It is now our 11th day in the ICU and these four walls are getting old. I am ready to bundle him up and put him in his stroller and wheel him in the garden.
Kitt bought him a little sweatshirt that says: HERO. I love it. I can't wait till his tummy is healed enough to dress him in it!! This New Years is going to be one filled with health and recovery.
~~~~~~~~~~~
posted Jan. 01, 2003 07:13 PM
Aiden is doing awesome, breathing so good!
You guys, I am so happy to be telling you GOOD news for a change. Not only does Aiden NOT have a collapsed lung anymore, he is also breathing so good that he is breathing all by himself!! They have the ventilator set on "supported breaths" which means he can breath all on his own, but the vent just "helps him".
I was so excited!! The only thing is, we had to leave his room. They did not want to up his pain meds or sedation, becuase he deosn't seem to be in pain, (his heart rate is fine now) but whenever I walk into the room he struggles and fusses. I know it is because he doesn't understand why I am not picking him up. SO they have asked us to use the “minimal stimulus pain managment therory." That means I don’t want to bug him right now. I kind of agree because he gets really upset when he sees me. The he starts to choke and struggle with the vent. One time he even coughed and choked so hard blood came out. For some reason, Joey is ok though, he just soothes him. But with me he gets upset.
I am so happy right now about his recovery. I am so glad!!! I know it will only get better.
~~~~~~~~~~
posted Jan. 02, 2003 09:32 AM
Still doing very good
His liver is still perfect. They are hoping that the ascities goes away before too long but it shouldn't cause him any problems. It is taking is WBC and his albumin away, but they are giving him stuff for that. The surgeon came in today, and said that he was doing very good, and if the respitory team feels that Aiden is ready to come off the vent they will begin to wean him down! I am not sure if they will, but they might! Just don't want it to be to early.
He is such a fighter. He still fighting all of his sedation.
~~~~~~~~~~~~~
posted Jan. 02, 2003 12:00 PM
Aiden coming off the Ventilator!!!!
I want all of you to know that they are going to take Aiden off the ventilator this afternoon, or "extubate" him. This is great news, as it implies the confindence of the pulmonary team in Aiden's ability to breathe on his own.
Extubation is no fun, though, and they will have to let Aiden wake up so he can cough when they take out the vent tube. He will probably be very scared, and not like it much, but hopefully will be more comfortable afterwards. And hopefully Mommy and Daddy can HOLD him soon!!!!!
~~~~~~~~~~~~~
posted Jan. 02, 2003 03:40 PM
AIDEN IS OFF THE VENT!!!!!!!
Aiden is off the vent/extubated and doing well!!!! Lisa said it went much better than expected, and he's sitting in bed trying to figure out his tongue again. He's making funny noises with his mouth, and making little bitty sigh sounds when he breathes.
This is GREAT news, as this should mean nothing but improvement from now on (hopefully!).
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Back to 2205 Christmas Eve:
The Holidays are a time of rememberance and Thanks to us for this miracle we were Given. Don't forget to spread the word about Organ Donation.. It is the Gift that gives more than just material.. IT SAVES LIVES
Merry Christmas!
The Hawk Family
(all four of us!)
Wednesday, December 21, 2005 10:19 AM CST
Today is my sweet child’s 3 year anniversary. Three years since the first day of the rest of his life. I thought about posting a letter I had written him, but instead I will do something different. I didn’t have my caring bridge page back then when this happened so I thought I would show you some of the online updates that I posted at a message board (COTH) that litterally was (and is… love you yahoo coth) my life line. I will let the words of THEN, tell you the story of what we are celebrating today. It won’t be everything I have archived, but bits and pieces of this amazing time in our lives. As most of you know we had been testing and testing people to be Aiden’s donor. No one matched. It was horrible. Then a “Earth Angel” named Sara offered herself for testing. She was part of the online group COTH, (Chronicle of the Horse) and was tireless in begging the transplant team to be tested. Calling them and emailing them, and more and more calls. SO when you see the name Sara just know that I am refferring to one of the most precious and FAITHFUL women I have ever met in my life. Also some of these updates are written by Kitt, my friend and Aiden’s Godmother. I know this is long. But it is the story 3 years ago today.
Just for back up information: Aiden had just been through a procedure a few days before to help take care of his veins in his esophogus that were bursting and bleeding. They found bad news, they were all huge and “ready to pop”. His esophogus was so constricted he couldn’t eat solid food, from the swelling of the veins. He was developing fevers everyday. He was sick. He was a 40 peld, (very high score on the National waiting list). We were just waiting. Waiting. Waiting……
posted Dec. 21, 2002 05:42
WE GOT THE CALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
at 5:10 this morning our transplant coordinator called me and said, " Lisa, we got the PERFECT liver." sara was laying in the next bed over and I turned around and she had her hand clasped over her mouth and was crying with me.
Joey is all the way down in Florida getting the baby ready to come for his new liver. They should be here by 9:00am. God placed me all the way up here because He knew that I needed to be "here" and let Joey take care of the "getting here".
I will post as soon as I know something. Please remember the family that lost their baby right before Christmas, that is making this possible. There are angels watching over us this morning. God bless that family.
OKay I am spinning and need to go and get ME ready for this surgery. Thanks you please pray harder than ever. Love you XOXO
11:55 AM
Aiden is in surgery now...
Sara here--signed in as Lisa so I could change the thread title
They took him in at 11--all of Joey's and Lisa's family are either here or on their way--it was no false alarm--the liver was PERFECT!!!!!!!!
I ran back here to the guest house to post and will do the same when we get a real update--especially when there is an end in sight--I can't possibly explain the roller coaster we have been on--ESPECIALLY Joey and Lisa!!!!
Update 12-22 - Aiden in PICU and doing okay...
Hello, all – Problems with breathing and clotting. He is very swollen, and is hooked up to any machine imaginable. there is a virtual column of machines next to his crib - on both sides. He will gradually be taken off machines one at a time, as he becomes more stable. Issues like his breathing will delay removal of some machines as the medical team is watching Aiden VERY closely. This is definitely the most risky time for Aiden, and possibly when the prayers are most important. Please keep him in your thoughts and prayers for the next 72 hours.
update 9:44
PRAYERS NEEDED
Just talked ith Lisa--there MAY be some complications with this liver--the next few hours are CRITICAL. Amidst the joy and relief please keep those prayers coming--we aren't out of the woods yet--Aiden is awake enough to recognize Lisa's voice so we know he is fighting--pray for God to lend him the strength and the will. I will post more as soon as we know something.
2:37
Aiden is in stable but serious condition
HI everyone, it is Lisa. We are exhuasted and worried. It is 1:30 on Sunday. I just left the hosptal to get a shower and get away. Aiden is now resting very comfortably and in his Daddy's care. (along with a million Dr.'s and nurses) Aiden is having some serious problems with his new liver. It is not working. His liver functions (LFT's) are very high. Normal numbers run around 75. Aiden's when he was with his OLD liver was running around 300. His new liver LFT's are 6,300. This is not a good sign. The surgeon and the team is discussing putting him back on the national waiting list for another liver. This will be decided soon. They are testing his lab values every four hours. Trying to see if his liver will sort of kick in. Every hour that goes by is making it more unlikely. The last lab results showed that his LFT's did not increase any more. They sort of stayed the same. This is good news for me. At least it isn't worse.
There are parts of his liver that are working. (his new bile ducts) My beautiful child is now almost rid of ALL jaundice. He is that goergous pink baby I always dreamed of. Although we do not know how well he is going to do, I can tell you he does NOT HAVE BILIARY ATRESIA ANYMORE!!!!!!!!! I want to shout it from the roof tops. He is not diseased any more. His bilirubin is all the way down to 2.4. Never in his entire life has it been that low. EVER! Mine and yours is about 0.7. I asked the surgeon what the old liver looked like. He said that it was as hard as his chest bones.
When I was in Aiden's bed side, Joey and I were praying and telling Aiden to FIGHT! I said Fight my little baby, you need to FIGHT!! I told the angel that gave us this gift to help Aiden fight for his life. Sunddenly Aiden opened his eyes and began to reach out to us. He has his arms strapped down, but he held up his legs. I knew at that moment everything will be okay. One way or another, he will make it. He will live.
The Dr.'s are not promising us anything, but I don't need their promises. I have faith that my son will come back to me. I know it and I am telling all of you, he will fight and he will LIVE!!!!
I am going ot go back to the hospital soon. I will call Joey before i do see if anything has happened. If so I will post again. Keep checking in. Also know.I feel the prayers wrap around me like a blanket. I feel your words and know you are there for my baby and my family. Thank you for that.
XOXOXO kisses from Aiden
Dec. 22, 2002 03:27
They just drew more labs and they are doing an ultrasound, to check where the blood is flowing. He is more stable than before. They kept having to sedate him, because he is fighting so hard he keeps waking up!! (that's with a morphine and versad drip going!)
I am rushing back to the PICU to be with my sweet baby. I love him so much. I just love him. He hears those prayers! Today Heaven became a more beautiful place as it welcomed in the precious child that gave my son his gift of life. God Bless that family.
Dec. 23, 2002 12:27 (written by Kitt)
Aiden is back in surgery
The ultrasound showed that his portal vein was not flowing--they are going to go back in to see if the liver is able to be saved. If it is, they will re-do the portal vein connection. If not, they will just close him up and re-list him for an immediate transplant. They may also have to take his spleen out and re-route all of those vessels. This surgery will be anywhere from 2-12 hours, depending on the route the surgeons must take.
We are all stunned by this turn for the worse--PLEASE pray harder than ever and send your angels to watch over the little guy during this surgery.
Dec. 23, 2002 03:42
The surgeons just told Lisa and Joey that for now, Aiden's liver appears to be viable. They are attempting a graft with a cadaveric vein in order to facilitate the blood flow to the organ.
Lisa wanted me to please ask for a gift from each of you--talk to just one person you know and convince them to be an organ donor--it could change SO much--Aiden's status could have been addressed much earlier--before all the damage to his veins caused by his portal hyper-tension if there had been plenty of organ donors--this is a subject we just don't talk about or educate people about nearly enough. Right now a small section of vein could save Aiden's life!!!! She was on quite a tirade and I promised her I would pass this along. As for the surgery, it will last several more hours so I will update you as soon as possible.
Dec. 23, 2002 08:07
Just spoke to Lisa - AIDEN IS OUT OF POST-OP AND BACK IN PICU
She said Aiden is back in the PICU, and out of the post-op area. The surgeons are VERY pleased with how the surgery went, and expect his labs to improve through the night. Aiden's new vein is working amazingly well. He is completely pink (NO jaundice), and his Bilirubin is 1.3 All of his numbers are getting better in dramatic fashion, and Lisa said he squeezed her finger this morning!I was so happy for Lisa to have that happen. They are still going to keep him on a vent for a while, becuase the fluid is still present, as is the corresponding threat of pneumonia. They will keep him in the PICU and on the vent until his fluid goes down.
Fly like the Hawk you are, Baby Boy!!!
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Back to 2005:
These are just cuts and excerpts of pages and pages I have from that time. SO much more happened. It was a tough post op, but he lived! He fought and God allowed him to stay with us. I think I will do a part two to this story so if you did not know us then, you can see what it was like. I will leave you with that for now, and just one other thing. Thank you donor family. Thank you for giving my child a fighting chance. Thank you for stopping in your worst of grief and saying, “let us donate our baby’s organ so that another can live” You saved our son, and no Thank You will ever cover it.
In honor of the donor family, please today, talk to someone about becoming an organ donor. Tell your loved ones. Tell them that it saved lives. It even saves the lives of tiny innocent children who just want a chance at life.
And now that we live that life, Now that it is here, and our wonderful reality… I will say it is the best life I could ever imagine. I am so happy and thankful. Happy Anniversary Aiden Joseph Hawk. It has been a long road, and wonderful road, with laughter and tears and I would do it all over again in a nanosecond.
Keep posted, I think I will continue this story soon. God Bless and please pray about that amazing family.
Love,
Lisa
The most blessed Mommy in the world
Monday, December 19, 2005 7:22 AM CST
Oh my goodness can you even believe that Christmas is almost here??!! Only 6 days!! I am so in the Christmas spirit this year, probably more than ever. It doesn't hurt that Aiden is at the perfect age of wonderment and joy when it comes to CHRISTMAS! He knows it is the birthday for Baby Jesus, he knows that Mary is His Mommy and that Jospeh (just like Aiden) is his Daddy, but Jesus has a "Big Daddy" in Heaven: God! He also knows that Santa is coming! In fact on Saturday we did it. We braved the halls of the mall.. we SAW SANTA!! This was an event in itself, but let me tell you what we woke up to on Saturday.
"Mommy I can't hear. My ear is broke"
"Aiden let me see...." I look to find blood seeping from his right ear. Gross... I then look further and find it on his pillow. Grosser... "Aiden doesn't that HURT!??"
"Nah.. I just can't hear."
We take him to the pediatrican, they diagnose him with yet another raging ear infection, our second BLOODY one this year, (yes he has tubes). We all are amazed at his pain tollerance, although secretly I am saddened by it. SO more anitbiotics, and we are off to see Santa.
Oh the Mall was like a real nightmare. I kept telling him not to touch, heck don't breath if you have to! People everywhere... and very few of them seemed happy to be there. Lots of grouchy faces, and rushing around. We get to the Santa line... Holy cow. Santa was on his 20 minute break. Aiden annouced to the whole world that "EVEN SANTA PEES ON THE POTTY!" yes he does. So Joey stays in line with Mason and I head off with Aiden keeping him occupied. We come back to the line, and it was insane. You would think we were at Disney or something. Kids everwhere. And many not so happy parents. Well except us. We were happy. SOO happy to have Aiden see Santa. His first time since he was a baby. (pic below)
And was that a time to remember. I will never forget that trip to Santa for as long as I live. EVER. Aiden was the sickest ever. He had been bleeding internally now for almost a month. Every day blood in the diaper, and then of course you know the story of the massive bleeds he had, vommitting it and calling 911. Not pretty. So he was for lack of better terms "failing". His PELD score was 40, (this is his score that places him on the national waiting list for his liver...this is very high, he was on the top of the list) And we were so afraid it could be his last Christmas ever. We held our little one, and someone in line recognizes him from his news paper articles. we begin to cry in line, and Mrs. Clause sees this. She asks us what is wrong and the sweet people in line, tell her how sick Aiden was. It was our turn next to put him on Santa's lap. We got up there and as any good baby would do, he went hysterical. YIKES! BIG HAIRY MAN!! Sweet Mrs. Clause, who was actually this Santa's REAL wife, walks up with tears in her eyes. She leans down and tells Santa. "Santa, this little baby wants the most special gift for Christmas. He wants to live. He wants a liver." We all start to bawl at the sound of it, at the raw reality of it. Even Santa begins to cry.
5 days later... Aiden got his liver. Aiden got his Gift. I would thank Santa, but I know who really granted that wish. Thank you Jesus.
SO back to 2006. It is Aiden's turn. He creeps up to Santa. Leery of the whole thing, although minutes before I got the whole entire story of what trains and tracks he wanted. "Lots and lots and lots Mommy!!" OK ok... So he sweetly walks up to Santa. "HO HO HO!!!! Come here little boy"
"Ummm... excuse me Santa sir. Sir, I wanna ask you somethin"
"OK what do you want to Ask?" Santa says.
"Sir, where are your Reindeers? And your sleigh?"
"ON the roof" Says Santa. Although he says it with an accent with sounds like "ruff".
"huh? NO SILLY SANTA! NOT DOGS... REINDEER!" Aiden rolls his eyes. Silly silly Santa.
The dialog made perfect sense to me, but Santa looked at Aiden like he was half crazy. So Aiden plops on his lap, he proceeds to tell me.
"Ok Mommy. Just one picture then I am done." Ok Aiden. realizing that my obsession with my new digital camera is probably traumatizing him. HAHA
We place tiny Mason in the arms of Santa, I immediatly go back to the 2002 day when I place my sweet baby Aiden. and I smile, triumphant because we have had so many blessings since then. So thankful for all of them.
The picture was so adorable, I made it our Christmas card this year. :-)
Well one more thing before I go. Aiden asked me this morning. "Mommy where is Rollie's picture on my puter?" (puter=computer) He asked me to put a picture of his doggy on his web page. I went to get a photo and he waved his drawing at me. "NO MOMMY THIS ONE!!" So here it is. Rolex, aka better know as 'Rollie'. He looks a little flat in this picture, and a little pale. But normally he fits his nick name Rollie.. with his Rollie Polly tummy.
Well GOD BLESS all of you!! Check in on Wednesday, the 21st. It is Aiden's 3 year transplant anniversary. We will be celebrating his Christmas Miracle, but a family out there will be grief stricken, mourning their baby. SO please think of this family, that we don't know, that saved our son this week. Much love to you all.
Celebrating and rejoicing in Christ's Birth!
Lisa, Joey, Aiden and Mason
Monday, December 12, 2005 4:31 PM CST
YAY!!! Aiden's labs are fine today! His ANC was 1560 plenty enough to have a play date tomarrow. PHEW! I know he and I are BOTH ready for him to have a play date. He is defintly acting like he is on higher steriods. No sleep. I thought last night we were gonna get lucky. But nahhh no such luck.
6:00pm I come in from fighting the lines at Toy's R Us (yes I know I am brave this time of year but someone has to do it) I walk in to see Aiden all flopped over the couch. Legs sprawled and sippy cup in just the range from his mouth where you can see the collapse of exhaustion.
I make noise.. nothing. Of course I immediatly think, "Is he sick?" Joey sees my eyes and says with out any prompting, "I checked.. no fever". WHO ME?? I NEVER EVEN LET IT CROSS MY MIND... hee hee hee. I laugh and grab the camera. Well no wonder he is out cold, he has been up every night for 4 nights. STEROIDS. I hear the oven clicking.. (yes it clicks when it is on.. I don't know what that is, but it does.) Joey tells me it was Aiden's french fries and Chickens he was making, before the pass out. I take them out of the oven.
"MOMMY!! I want my chickens!!" Oh.. he is awake. ANd not grouchy.. weird. OK so I get his plate ready and we serve him his 'chickens'. I leave the room head for the closet where the wrapping paper is and re enter the living room. Aiden: Out like a light once again. Now he is sitting up. I laugh, and grab the camera for round two of my silly boy passed out, dinner next to him, untouched. 
*note in the photo his pullover jacket is a size too small and on backwards, but he likes it that way*
So Joey and I are feeling pretty sure we are getting to bed nice and early. Aiden is out, Baby Mason is out, our turn. Yeah right. Suddenly the grump monster stirs. He is awake.. After asking, then TELLING and finally PLACING him in his bed for the million'th time, I glance at the clock it says 11:45pm... and off in the distance I hear a whistle. "blow.. whistle...blow...whistle.. AWW MAN! I am NEVER GONNA GET MY WHISTLER TO WORK" he practiced his whistling till he finally fell asleep. ANd I fell asleep with a smile on my face thinking of him laying there trying to make his "whistler" work.
So I am once again a Happy Mommy. Labs were good, Aiden's cough is so much better, and no hives for a few days.
Prayer requests:
Grandpa had a surgery today, please pray he feels perfect soon.
Annika is still in the hospital needing your prayers
Angus is needing some prayers as he is undergoing complications after transplant
Also Babu's Birthday is this Wednesday! YAY Babu!!
Have a blessed week!! Love, Lisa, Joey, Aiden, and Mason!!
Friday, December 9, 2005 2:35 PM CST
Well I am not sure if this is the normal gloating a mommy does, but let me tell you what MY kid can do! Last night he swallowed his first pill. And today he climbed up in that blood drawing chair, "Mommy I don't want to cry anymore, I can do it like a big boy." He got his blood drawn, not a tear was shed. He did say it "hurted", but he said he was done crying. So this is my little guy's accomplishments thus far, Not only is he adorable, kind and charming, he can whistle, he knows his lefts and rights, he can "read" all his numbers, and he swallows pills and sits for blood draws. He is who he is and I am ONE PROUD MAMA!!!
There is a kid's band called the "Laurie Berkner Band" and she has this song called, "I am not perfect." I LOVE IT! We sing it all the time like an anthem...
I'm not perfect,
no I'm not
I'm not perfect
but I got what I got.
I do my very best
do my very best
do my very best each day
No Im not perfect
and you know, I LIKE IT THAT WAY!!
SO cute!!!!! We sing it often. I need to Google her and see if we can find that CD. OK so we got labs today and his ANC dropped to 900 and his WBC is 3.2. He needs to be hangin out at home for a while. No playing with anyone. he hates being isolated.. and he is SOO bored! It isn't so bad, but I called it, this is how he trends. His bone marrow always supresses after an infection. It will probably get worse.. but always gets better pretty quick.
Joey and I were talking about having his Gift of Life party and invite all his friends to make up for the fact his birthday got cancelled and he was admitted this year with the "R word". Darn it, looks like no party again. OK so his fourth Birthday is going to be a wonderful party! Mark my words. If not for him, for ME! haha.. I still have a ton of Thomas streamers and table clothes and Thomas gift bags. I finally opened the Thomas Napkins and Paper plates, he kept saying, "Is it my pretend party" at every meal. SO silly!
His liver looks terrific, thank you Lord for that! Tonight I am heading to my church, watching Aiden's best friend at her preschool music performance, (Hannah's night of Stardom) and also just was told I am speaking about organ donation at it. I think I will bring Haley's CD and play her song, Everywhere. After all, what better than her angel voice to encourage others to become organ donors.
OK so I am assuming labs repeat on Monday. I am just laughing cause you all haven't heard about our health insurance drama, but the "buggers" (nice Christian word i will use instead of the mean naughty one I usually say)wouldn't approve ANYTHING. I mean ANYTHING! They need to have my team write a letter telling why a child with a liver transplant needs to get labs drawns?!!!??!! So after we finished our 30 authorized lab visits in September, we had to beg and beg for more. They gave us 4!!! 4 more lab draws. I said to my pediatrician's office, "DOn't worry Aiden won't use four by the end of the year," OK so we have one left. ONE. SO I am laughing thinking, hoping his labs look perfect by Monday, so we won't have to fight the mean buggers at Blue Cross Blue Sheild again. But I already know.. My poor PCP will have to fight. Oh I really need to get them a good Christmas present this year.
Anyway, Hope all is well. I will update very soon. Geesh they way it has been lately, I may update tomarrow. HAHA
PLEASE PRAY for Annika or (www.moreena.blogspot.com) she is very very sick. She has been suffering with life threating bleeding. (she has already had 2 liver transplants and just needs a BREAK already!) And I mean SUFFERING. Moreena is an amazing writer you will be just so moved by this mother and her heart, as it is so exposed with her daughter in such a dire situation. ALso pray for Havalah or www.brokebox.com/baby she is having a lot of days and nights in the hospital with rejections and bile duct issues. She is just the cutest little girl, and I just want her to be home healthy and having no more boo boos. I guess I pray that for all the children here at caringbridge, or CLASS, or the ones that I haven't learned of. God bless all the little kids who suffer. God bless them all!!!
Love, Lisa
Wednesday, December 7, 2005 9:22 AM CST
YAY!!! We are HOME! Aiden slept in his bed for the first time since The night before ThanksGiving! It is 10:00 and he is still asleep, so He must be having happy dreams of being home. YAY!!
Yesterday Aiden had an echocardiogram before we left and an EKG both looked normal. Ok so he was sent home on some weird drug called Gadoflaxin(spelling?) and we had to hang out while he had his first one just in case he reacted to it.. which he didn't. He is back to his sassy, silly, train playing, goof ball self. But still sick. The para-influenza virus may take a little bit to get rid of, but he is not sick like he was. Praise God!
SO on to the REAL reason I wanted to post... ATLANTA....
OK I finally am going to update what happened in Atlanta during Aiden's visits and his scope. It was so very interesting, and helpful. (I think)
* Tuesday we saw the Immunolgist Dr. Phillips. He is great. SO smart and caring. We actually sat and talked in the room for 2 1/2 hours. Just doctor time. It was crazy. Aiden was so bored, but did good enough. Dr. Phillips had some really interesting points, things to say. Aiden is now officially diagnosed with Idiopathic Anaphylaxis. (the disorder's true meaning is: "Anaphylaxis from unknown reasons") In children it is SO extreemly rare about 17 kids in the US. As adults it is slightly more common. What does it mean? Well NOT ONLY does Aiden have life threatening food allergies to Milk, soy, peanuts, nuts, beef, egg, shellfish, fish he also can just have anaphylaxis to "nothing". Which is what he has done in the past. It is a scary diagnosis, but I ask myself what does this change now that he has the "label" of this disorder? One thing.. maybe a treatment that works to help. SO I am accepting the diagnosis although the immunolgist was slightly annoyed that I ignored him when he said it last FEBUARY, I finally concede and am just hoping the medicine regimen works. Aiden is now taking high doses of three new meds and they increased his prednisone. We added three immune blockers that are common drugs for everyday use. (actually we have been on one of them for a long time) SO Singluar, Zantac, and zyrtec as well as high dose oral steriods. This is to actually BLOCK or reduce the inflamatory aspects of the allergic part of his immune system. So a few harmless drugs, except that prednisone. But the said for Aiden it is an "neccesary evil". It may or may not help.
SO here is the intersting part! Thyroid! Here is the newest theory on Aiden: Aiden's thyroid is not sending the hormone to the adrenal gland that sends out ADRENALIN. (they still know the drugs are the reason for his problems, but this another reason it gets so out of hand) Here is what they feel is happening: A little Play I call "The Darn Thyroid" will help explain it: (yes this is my offical plea that I have lost my mind)
"The Darn Thyroid" written by a sleep deprived crazy mommy.
Aiden takes a daily dose of prednisone for the past 3 years.
His Thyroid says, "Hmmm well there is always a level of cortizone running through my body I don't need to really work any more sending out the hormone when I have an issue." SO there sits the lazy thyroid.
Aiden then comes in contact to SOMETHING (lets use egg for instance since it was our most recent). His immune system says, "What it that weird egg? Yes I know I have had it a million times, but I don't like it!! ATTACK!! KILL the egg!!! ATTACK!!!!!"
The immune system then begins to send out it's attack anitbodies to the egg. He think's he is doing it's job but really the Immune system is just an OVER-ACHIEVER! He really needs to take a vacation, but he likes his job A LOT! So the antibodies bully the poor egg, (which is in the shape of an innocent cookie might I add).
This is where the Thyroid is supposed to send off his helper hormone called "cortizone". Umm Thyroid.. where are you? Hellooo? are you there? Thyroid sleeply replies, "Nah.. I am NOT sending out the hormone to the adrenlin gland, I just am just resting. Aiden takes enough of that hormone it SHOULD just fix him." and the lazy Thyroid just sits there.
Who will play the part of the life saving adrenlin? No one? Oh no! what would have just been maybe a little hive is getting out of control! Immune system is just ATTACKING! Chill out immune system! But me telling it to chill out does not work. It needs Adrenalin... wait was it that? Is it a bird? A plane? Noooooooo it is THE EPI PEN!!!!!!
ON comes Mommy with the Epi pen (renamed epi-dagger for fun)... It Jams into his leg. The FAKE adrenlin goes to the site. "Chill out Immune system antibodies. geesh! Let the kid eat the cookie!!!"
And there sits the Thryoid. Smug and lazy... "See I didn't have to do ANYTHING. that crazy "Mommy" lady took care of it again.
THE END
Silence by all who just read this I am sure. Are you all calling the paddy wagon? Well don't... That is how I learned it in my head.. and that is how I am telling you guys. So that is the story of what is happening and why just about EVERYTHING is anayphyaxis. Even in his sleep. His immune system just sees things it wants to ATTACK and a normal body would say, "chill out" but Aiden's doesn't. It doesn't work right. He can go into anaphylaxis to anything. It is beyond real allergies at this point. Whatever his antibodies want to pick on.
OK so.. The plan? We are doingn thyroid work ups, weird Immune system blood work, and other things I am waiting to hear about. I am thankful for every step closer we come to figuring him out. Oh how I love this little boy, and how the look in the immunlogists eyes said it all. Dr. Phillips simply said to me as we were leaving, "Mrs. Hawk. WE MUST FIND a way to treat Aiden." I know. I know we MUST. 13 anaphylaxises is just too many.
Wednesday.. clinic at the hospital: They all agree that Aiden needs more steriods. We reluctantly increase it again. Hoping that something will happen and he can not have to take this horrible drug. But for now Prednisone is our friend. Clinic was quick and easy we just made plans for the next morning's upper and lower endoscopy. But I have to tell a funny story. Really I am putting this on here for my gal Haley... it made me think of you, and i know you were laughing and laughing in Heaven when it happened.
Aiden was bizerk. Jumping and playing with Mr. Todd (surgical PA on the team), Dr. Romero (our hepatologist/medical director,) came in. After Todd had Aiden all wound up Dr. Romero wanted to do a physical exam on Aiden. He asked Aiden to lay on the exam table, which was just minutes before a launch pad for his some broken wheel Todd and him were playing with. Aiden says "No." Ughhh... So Dr. Romero said, "Oh Aiden yes sir, now jump here in my lap." Dr. Romero is just the sweetest man by the way. He picks up a squirmy Aiden and lays him in his lap. Aiden laughs and laughs. Dr. Romero begins to palpate Aiden's tummy checking his spleen and liver. Aiden thinks he is getting tickled. Dr. Romero says, "does that tickle?" and he tickles harder. Aiden is now laughing so hard he is gasping. Through the gasps he musters out, "Dr. Rolero... stop! hahha Stop!! hahahah.. I am gonna BUTT FROG on you!" All the three doctors and team members say almost exactly at the same time, "WHAT DID AIDEN JUST SAY?!" Aiden then through the tickles and laughs says it again, (to my horror might I add). "I am gonna BUTT FROG on YOU!!!!!!!!" Dr. Romero will all his grace and shyness is laughing so hard that tears are running down our faces... he says, "Aiden did you just fart on me??!!" No one can speak as Aiden says "YES!!!!" we all just laughed and laughed and laughed... It was truelly so funny. And perfect timing. The trip was so somber really. Everyone was so sad for him for what he has been through, and then that little turkey "Butt frogs" on his doctor. Thanks Aiden we needed that laugh.. of course it leaves me with the same question I ask God often... "you were sure you wanted ME to have two BOYS?" Butt frogs are not something I used to find funny.. but I guess I can change too. hahaha SO Haley girl, that one was for you. I could almost HEAR you laughing from Heaven, as your favorite doctor got stinkered on.
Thursday: The scope. Aiden had to be at the hospital for his upper and lower endocsopy at 7:00AM. I bought him a new "Toby" train the day before. I can't believe with all the trains we have, we never had TOBY! Toby is one of the main characters of Thomas. So go figure, I went and bought him Toby after the Butt frogging experience. So Toby, me, Babu (joey's dad), and Aiden all sat and waited for the scope. The nurse was so precious, she knew that another room had a window that could see all the amazing construction they are doin on the new hospital. So we change rooms. Aiden is so into looking out the window at the "bob the builders" that we loose Toby. Oh man... Babu and I are searching everywhere... Aiden is totally annoyed and he is called to the Opperating room with out Toby. The nurses were sent on high alert.
The scope went well. He was intabated for the procedure, so I knew he would be in recovery for a little bit. In the mean time I meet with the team's psychiatrist (Dr. Mee) and child life person, (Lauren.) We discuss all the things that can help me with Aiden. He has had some real problems coping with the allergies, the fear of hives, and the anaphylaxises. Really he is just "traumatized". Guess that is why it is called Trauma medicine.. when he is having an anphylaxis. The liver stuff he is good about... but the fast scary anaphylaxises have really effected him. I got some great pointers.
Next, Toby is found. Phew.. Toby was looking out the window of the old room. The nurses found him there. That made the next thing much easier.
Aiden is wheeled out from recovery, and I see his face. Totally swollen, covered in hives.. You know the drill. I really don't want to tell this story but yes he has another allergic reaction.. this time to the tape they put on his eyes while he was under general anesthesia. It was scary, but he is just fine. I guess it was a "good thing" he did it there. Showed the Atlanta folks his amazing "Attacking abilities" (see the play "The Darn Thyroid" above for reference hee hee).
The scope results were much better! Biopsies still pending. But the lymphonodular hypersplasia was ALL GONE! That must mean we are doing something right! Also he reflux damage was a little better. He did have a healing ulcer on his colon, which explains the blood in his stools. And they are biopsying all of it, I will tell you what I know when it comes back.
SO all in all, It was an interesting trip. Obviously the thyroid and immulogy appointment was excellent. It opened new doors for us. I hate to have the ideopathic anaphylaxis diagnosis, but if you go back over my journal history you will see sometime in Febuary the immunolgist telling me THEN he had it. I just didn't want to believe it. SO anyway.
Sorry this is so long. I am not sure I have actually kept anyone's attention after that crazy update. But if you are still reading at this point, thank you. Thank you for praying for Aiden. Oh how I thank you. I know that only God is the author of Aiden's path. And I faithfully wait to see Him heal Aiden.
"And the prayer offered in faith with heal the sick" James 5:15
SO off we go to finally get our Christmas decorations out and remember the aniversary that is quickly apon us. Aiden's 3 year transplant anniversary is December 21st. God bless you guys, and thanks for coming and reading this whole thing.
Love, Lisa
Monday, December 5, 2005
** Aiden is in the hospital right now, please read the journal history for the whole story**
Monday 8:00 PM update
PM Update
He is feeling lots better! Fever free too for over 24 hours. He finally cultured positve for the Para-influenza virus type 1 and 2. So yay we have a culprit and with a culprit there is a method of treatment, and it just so happens to be what he has already been getting. He has been getting breathing treatments, IV vanquomycin, IC Clindomycin, and now is doing much better in that area, and the cough has gone from juicy to a more drier cough. ALL GREAT NEWS! Labs look about the same as I had posted last night, but his ANC (immune fighting abilty) dropped quite a bit in 12 hours.. went from 4000's to about 1400. Still in an ok range though. Just watching the trend. Hoping the bone marrow kicks back in again. So over all he looks MUCH BETTER and maybe we can manage him at home. They hate to keep him inpatient with all the germies at the hospital.
Today he had a CT scan of his sinuses, and tomarrow he will have and ECHO cardiogram of his heart because of all the multi anaphylaxises he has had. So hey that is a nice bonus to get it inpatient.
So I am a happy mommy cause my boy is happy. LOVE it when he just perks up and plays his Thomas. I knew he felt better when I heard, "Mommy set up a COOL track for me!" so there I was like an architect making the most awesome track for his trains. I had many twist and turns set up on the floor of his hospital room. (of course on a blanket) so for hours we played Thomas. Then when that got old Aiden used the bed as a slide. You just simply crank the head part of as high as it goes.. the feet really low.. and WHEEEEEEEEEEEEEEEEEEEE.... **** I do not condone this behavior, I Just simply help him with the buttons on the bed. hee hee hee***** We then watched Sponge Bob. (LOVE THAT SHOW) and we even got to paint the window on the door! We made snow and a big Christmas tree with presents under it and a star on top. He was totally into painting the window and then it was weird, .... A nurse peeks her head into the room and says, "Gee MOM that sure looks good!" I look around and no Aiden anywhere... he must have gotten tired of me hogging the paints and went to the bed and ate his Chicken nuggets. I was way too into it. Sorry Aiden. But hey I let HIM paint the snow.haha
So thank you so much for the prayers! Once again we felt lifted today and I know it was just God's power! Prayer requests; Continue to pray for him, his over supression stuff, the parainfluenza, the pnuemonia, and If we get to go home tomarrow I know he will be on isolation cause of the bone marrow supression. But PRAY for DISCHARGE! (not nasal discharge, but discharge from the hospital)
God BLESS!!
Lisa
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Monday AM update:
We re ran labs this morning. Aiden was AWESOME and reminded them they weren't allowed to do it unless he had his "magic cream" on. Way to go buddy! So they left got the EMLA and then came back later to draw labs. The first time he took some control over what happens to him, he was so proud. So they are rerunning labs this morning to watch him due to the way he becomes nuetrapenic when he is sick. SO far labs are fine, just watching the trend and how it is dropping.
We saw pulmonology yesterday (totally wonderful doc she was so nice) she recommend we see cardiology while we were inpatient just to do a nice little check on his heart due to the many anaphylaxis's he has had. The drop in heart rates etc...So that will be today. And then also we are seeing Infectious Disease to see if they can help sort out the meds for when he is discharged and what he can take orally. So, lots of consults today.
They are highly suspicious of the Para-influenza virus. The culture on that is a long one, and they said as of now we are treating as if it were para-influenza. They swabbed his nose for a million viruses (which really made Aiden "back flippin" mad) RSV, Adenovirus, and more. Ran EBV, CMV, and a bunch of other ones. Also today they are running the IGG IGA IGM Titers on some other viruses and illnesses. THE HUNT FOR THE VIRUS.. haha..SO anyway, because he is so allergic to antibiotics it just makes it more tricky to treat especially the pneumonia, so they are trying really hard to figure it out. But like I said it is looking like para-influenza. The super high glucose they said indicated that there was an infection so infectious disease will also deal with that.
So I slept here at home last night with Mason, Daddy slept with Aiden, and I am about to shower and do the switch-a-roo again. Aiden called and told me to hurry. It stinks that he is old enough to say how things hurt and ask it to stop, but on the flip side of that he is also old enough now to say, "Mommy I love you." or "Mommy you are my best friend"..And it is so sweet to my ears.
Anyway, love you guys, keep praying.
Sunday, December 4,
Sunday PM update
Well he is doing his usual bone marrow supression with a virus. Since last nights labs he has dropped quite a bit in all his numbers.
Platlets went from 278 to 174,
WBC from 9.6 to 5.6,
Hemoglobin, 13.7 to 11.3
Hematocrit 37.6 to 31.7
Glucose is 349!!!!
His ANC is dropping, everything is dropping. Liver stuff is fine although
Albumin went from 3.9 to 3.4
This is just how Aiden gets sick. Some kids just get fevers and get past them, we have never ever in the history of Aiden had a fever and NOT had this happen. I hate it for him. He feels crummy. He feels awful. I just talked to him on the phone and all he said was "Mommy the water hurts" whimpered and then passed the phone to Daddy. He means the heparin in his IV. It does sting, I know I just had one when I was delivering Mason. TRUST ME, the whole time that stupid IV was in my hand, all I could think about was how Aiden had this IV sticking out of his chest for over a year, then played and played with his PICC line for months. Amazing. I am such a wimp.
Anyway, PLEASE pray for Aiden. I am confident they will get this fixed as they have the 3 other times it has happened. But the pnuemonia and the high glucose scare me. New territory. I am just going to sleep tonight the best I can and then take my shift tomarrow. Also preparing myself for a possible transport to Atlanta.
Off to bed for at least another 2 hours.. Baby Mason you know he is a hungry little stinker.
Love to you,
Lisa
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10:45AM Update: he is still having fevers they are contacting pulmology to check him and to see if they feel he is on the right medication tract and so forth. He is sleeping all morning Joey said. He hasn't yet really woke up. Once, to ask for some ice and then back to sleep. I guess he needs it, but it is so foreign to Joey and I to see him ANYTHING but active and UP.
So weird. He woke up with a "barky" cough in the morning yesterday... by night it had turned to Pnuemonia with fever and a very listless little Aiden. Maybe that is "normal", but for this mom, it seemed so fast and scary.
OK well I am just spending some time with Mason. Packing Aiden's Nemo sheets and blankets, (man I should have bought those Buzz Lightyear Sheets he wanted, he is sort of "over" Nemo) packing his favorite trains, and of course FOOD. The thing about being admitted is he can't eat anything safelty there. They even sent the Dietician to us, and she once said, "I would not trust letting him eat here. The cross contamination risk is way too high." Of course no need to tell me.. so I am packing up the Dino Nuggets and the Rice drink.
So Send up some prayers for Big Brother. He was SO incrediably BRAVE yesterday. Oh I am so proud. And As and ASIDE:
HAPPY BIRTHDAY JOEY... You are the most incrediable Daddy in the world, but as a husband you have made all my dreams come true. I love you and so does Big boy, and Baby Brother.
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4:00 AM update
Pnuemonia.. Aiden just got finished getting admitted to All Childrens hospital in St. Pete. He has Pnuemonia, fever, cough, and now maybe some other viral thing. He has developed a rash on his body and his is miserably sick. Please pray for him. I have been holding him while he has been stuck 4 times for an IV, chest X Rays, throat swabs, and tons of prodding and looking. He is scared, and he is feeling really sick.
I will update more when I can. I just am asking for some prayers tonight and then when it isn't 4 in the morning I will be able to tell the whole lovely story.
Ps/ Atlanta was interesting. Stay tuned.
Love,
A tired Mommy,
of a tired boy.
Wednesday, November 23, 2005 10:00 AM CST
Happy thanksgiving! Here is a few things I am thankful for. (thanks Karen for this cute idea!)
T- two beautiful children
H- healthy days
A- angels above (love you Haley)
N- never giving up HOPE
K- kisses from my best boys
S- Salvation
G- Gift of LIFE (organ donation)
I- imaginations that go wild
V- very sweet friends
I- immune suppression drugs. (weird but I am thankful!)
N- not being admitted on this holiday!
G- God's Wonderful Grace
I want to immediately link you to Haley's site yet again. Please pray for my friends during this very difficult time. I know that God ONLY can be the one that can help them find some peace on a day that means THANKSGIVING. I imagine that without God, a day designated to be thankful must be on of the HARDEST days ever after loosing the joy of your life. But as I read her words she wrote this morning I am reminded, that even in the worst of pain and the worst of tragedy, there is still one Glorious thing to be thankful for: Jesus and His Promises. So please go to her site, sign her guestbook and let them know you are praying. It takes only a second to sign the guestbook, but it means ALL the world to people who need the encouragement. Her link is at the bottom of my page. or just go to: www.caringbridge.org/ga/haley
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Aiden update: Allergy results are back. We lost egg. darn it. No more egg. This equates to "basically" no more baked goods (not that he had many to begin with) unless I get very creative, also mayonnaise and the many other things that eggs is in and on and all around. Oh well.. so what. Moving on; not gonna dwell. He still has food and he still will be happy. I am THANKFUL for the limited foods we still have that he can eat safety.
We are heading to Nana and Babu's house early early tomorrow morning.. (hoping that driving in the dark will be easier for the two boys. especially Baby Brother who just got four vaccines yesterday and is experiencing a mild cold as well.) We will be having a Thanksgiving party/ Aiden party with Joey's extended family. I am excited to see them all, but of course very nervous about him being around so much food and stuff. Pray that we have a wonderful and SAFE visit with all our loved ones.
After this weekend, (if my "not so helpful" insurance company approves it), Joey will be heading home to St. Pete and myself and the boys will stay in Georgia for the entire week. Aiden will then go to Atlanta (our hospital) through out the week for different tests, doctor visits, a complete colonoscopy and endoscopy (top to bottom so to speak). Hopefully getting a new game plan on the whole allergen issue and transplant meds and all the confusing stuff that has come along with this crazy immune system. SO that is a BIG prayer request. Pray for wisdom for the doctors, and safety for Aiden, and SANITY for me.
Last but not least, Aiden has a cold as well. So far it is not too bad. I will bring the nebulizer with me, but pray that Aiden's cold is gone soon. Thank you.
Well, everyone, Hug your loved ones this holiday. Also please keep Aiden's friend Annika in your prayers. And just know that of some of the things I am most thankful for, I will say it is YOU. The friends who have supported us and prayed for us all this time. THANK YOU!!
Love, The Hawk Family
Friday, November 18, 2005 9:48 AM CST
Well, this week was just us trying to get through it. I think with every anaphylaxis, my sanity might go down another notch. Of course those who love me and know me, know the sanity stuff was thrown out the window a long time ago. HA! Thankfully, Aiden has only mentioned the anaphylaxis a few times. It was almost like this week was a better week for him in some terms. Probably because I am always a better Mommy after this stuff. Hug a little longer, play Thomas on the floor a little more, and yes there is that occasional lolly pop for breakfast I give.
I just want to tell you the best little story, Aiden got labs on Wednesday. Normally this can go either way. Screaming crying, or brave face with some crocodile tears. But every so often, he will choke back a tear and be a "big boy." Well, Wednesday, was incredible. He went back for his labs, and Fatima (his phlabotomist that we have been using since he was 3 weeks old!!) had him sit in the chair. Baby Mason began to cry, and Aiden tried to soothe him by telling him all about the blood draw. Aiden was proud to show Mason that he was a "big boy". We had to draw 14 cc's, because we tested a whole series of allergens. So in went the bumble bee (needle) Aiden did not cry. He helped with the tubes holding them. He declared, "My heart will make MORE "Aiden Juice", Mason, don't worry" I was so proud. When it was all over, he sort of looked at us in shock. He said, "Mommy, I DIDN'T CRY!" Fatima and I cheered and clapped. I was so proud of him. He was very proud as well. As we were leaving, Fatima walked out into the waiting area. She said in a loud voice, "EXCUSE ME EVERYONE.... I have an announcement to make! Aiden Hawk did NOT cry today when I drew his blood." The whole room began to cheer and clap for him. Some people even stood up! It was rather surreal. He was high fiving people and clapping for himself. I of course was put over the edge and just cry to myself, I didn't want anyone to see, cause I am sure I looked like a whacko. After all it was only 2 days since his anaphylaxis. They are so kind to him at All Childrens, Aiden is a regular there. Just since January till September Aiden maxed out his authorized 30 blood draws. Poor kid. SO needless to say, it is like family there. And boy that was a wonderful day for Mommy. He shows me time and time again, his resilience and strength. Thank you God.
SO his labs looked very good! His white blood cell count was elevated some, about double his normal, but then he just woke up with a runny stuffy nose. That is probably the culprit. His liver looks wonderful! Praise God! We drew about 10 food allergens as well as dust mites, and that will be back in a few days.
I wanted to share some photos of Aiden and Mason's room. There are several family and friends who have wanted to see what we did with the boys room. I have promised to post these earlier, so here they are! 
Next week is the holiday, and we have big plans to be in Georgia for a week. We will be up at the hospital trying to find an answer for Aiden. I will post more next time about that. In the mean time, thanks for your prayers and sweet words. I cried when I read the guestbook. It gave me so much strength from your support. Thank you for caring about Aiden, and our family. God Bless.
Ps/ here is a cute picture of Aiden. I took it the other day. He was laying on his back and looking at the clouds. He was pretending he saw animals and funny shapes out of them, so I grabbed the camera and took it. Just thought it was cute.
Monday, November 14, 2005 10:17 AM CST
OK its a long one.. but here it goes.
Lucky number thirteen? I don't know what good couting is getting me, well you know what? Probably no good. Too late to stop though. Aiden had his thirteenth anaphylaxis last night. I am in shock still. I probably shouldn't be writing this journal because I may come across as some bewildered-exhausted-crazy mom- of a child that turns blue in front of you.. well wait that IS what I am, so that is what you get. The unfiltered, very real story of my life. It is usually pretty wonderful and nice, but when it is bad it can get UGLY.
We had a delightful day with Aiden's best friend Hannah. They hadn't seen each other in a really long time, Hannah took a trip to "Noba kotcha" (Nova Scotia). So after leaving Hannah's, we came home and I was feeling pretty frisky. SO I decided to make Aiden his "special cookies". My friend Ivey gave me this fabulous recipie for the best cookies.. (all allergin free!) We make them ALL the time, and they are so quick and easy. Anyway.. I let Aiden lick the spoon and he is so happy. Covered in cookie dough, but happy. I then hear it from the next room.
"Sniff sniff... sniff sniff.. sniff sniff....."
Oh CRAP!!! Hives. Small little pink "harmless" ones on his mouth. I give him benedryl. Thinking well that was a close call, but nothing big. SO I make a phone call. I call Hannah's mom. I say, "Kelly the weirdest thing happened, Aiden had an allergic reaction. Hives on his mouth from the cookie dough he always eats. SO weird. I think he might be developing a more severe egg allergy. I don't know." It has been about 15 minutes since the benedryl, I call him in there he looks fine. I go get him his rice drink, he is fine. I am still chatting on the phone, nursing Mason. Then I see him frozen in my living room, about 15 feet from me. I know immedialty what is happening. I yell, "I GOTTA GO!" and Start running for the epipen. I have the phone in one hand and the epi in the other. Aiden starts to run from me screaming "NO!" His tounge is black/blue. Swollen. His top lip is so big it is pressing on his nose. He is crying. He is crying so hard. I tell him I love him over and over. I tell him I am so sorry. I AM so sorry. I jab the epi pen (dont' know why they call that thing a "pen" it is a needle.. it hurts. Pen's don't hurt they write.) in his leg. I hold him. He is flinching from me like I am a monster. Mommies are ment to hurt their children. He doesn't know that it saved his life again.
My hand is trembling so hard I can't dial 911. I dial 91 hang up.. dial 91 can't get that last 1 in . Finally 911. I am holding him he is screaming. I call them and tell them. They want a medical history over the phone, I silently to myself think YEAH RIGHT, how much time do you have people? I can't hear a thing they are saying... Aiden is SCREAMING in my left ear and the tiny baby is screaming on my bed not understanding why his meal was ripped from his mouth. I am having to remind myself, "Lisa, Mason is ok. He is just hungry. Stay on the phone." But with the two of them it was awful.
The paramedics are on the way..they want me to stay on the phone.. I can't. I hang up and call my parents. I still can hear NOTHING cause of the wailing and gasping. I don't know if the phone even rang or if they answered I just scream into the phone.. "GET OVER HERE!!" over and over. They were there before the paramedics. (they live a few blocks away, thank God) I tell them to take Mason, I am going to the hospital in the ambulance with Aiden.
Aiden is trembling, pale, and scared. They come in, knowing I just saved his life and they just have to make sure he doesn't go into a bi-phasic reaction (second anaphylaxis after drug wears off.) I am holding Aiden, as they ask me a brief history. I say, Aiden has allergies..Then the heartbreaking part. Oh my poor little boy. He says litterally choking back tears, "Guys, I don't have allergies! Guys, I don't have allergies!" he won't stop saying it. He wants so bad for it to be true. I hold him and hug him. He is mildly wheezing still, but the epi is a wonderful drug. Swelling was down. He was ok.
I have my own pulse ox. Measures how much oxygen you have in your blood, during the 911 call I stuck it on him. his o2 level was 91 AFTER the epi. I am sure he was seconds from crashing. We get in the ambulance, I was sure to bring Lady the special train from the Magic Railway, and the Golden Thomas engine, also a special one. Blue Baby came along for his umpteenth ambulance ride. Poor blue baby, he has endured a liver transplant, scopes, surgeries, Ct scans, and everything Aiden has. The ride scares Aiden. I guess I can't keep fooling him that it is "fun". He has figured it out. It isn't fun. I hold his hand cause he is in a car seat on the ambulance. So precious, he answers the questions the paramedics ask. He lets them do blood pressure, and EKG, and other things. He just sits there tired.
So where is Joey you all are thinking? Well maybe not, but I am thinking it. I guess the Lord has it planned that I am the one that gets this burden. I don't know why. That will be question number 312 when I reach those pearly gates. Joey is at the Buc's game with a friend.
So we arrive at the hospital, Aiden is now acting more normal. SO resiliant. He even laughs as I grunt when I pick him up. (he is a whopping 39 lbs!) "Don't forget Thomas!" Close call, Gold Thomas was about to be history.. we go back and get Thomas from the ambulance stretcher where I had him bucked in the seatbelt. Aiden was happy. I told him, "Aiden you saved the day! You saved Thomas!" He was gleaming from ear to ear. Thanks Lord, for that little moment. HE needed that.
We sit in a very cold isolation room in the hospital ER. Freezing cause I undressed Aiden incase he had allergin on him. The nurses and docs come in and say many times, "Good job Mom. You did our jobs for us. You did a good job." I don't feel like i did I good job. I feel awful. We sit there till late, and Daddy shows up 30 seconds after I sign the discharge papers. He come in bearing a gift. We had bought Aiden a really cool Buzz Lightyear sweatshirt for Christmas, and I called Daddy and told him to run by the house to get it so he could have it in the ER. Aiden slips it on, and we leave to go get Baby Brother from my parents.
Of course like every anaphylaxis Aiden has to sleep with me in case it happens again. I sleep with one eye open. I hold him and hug him and touch him all night. I love him so much. He cried in his sleep. I cried in mine.
So there you have it folks. Number 13. No worse or less than number 6 or number 12. They all suck. They all scar me. But in the end I always feel so lucky that he comes home with me. I always thank God for one more chance. It could always be so much worse. But man it really is hard to watch. It takes me a long time to get that look on his face out of my head. This is the first time he looked fearful of ME. I hated it.
So please say a prayer for us. Pray for him. And of course just Praise God for the days we have with each other.
Love,
Lisa
Tuesday, November 8, 2005 1:03 PM CST
We had good weekend! It started Friday with a wonderful day at the park with his friend Spencer. (Mason's 6 month old friend Ian was there to show him the ropes as well. haha.) Spencer is the cutest kid! Aiden and him have the most.. funny play together. 
Both of them off in their own little la la lands running and laughing. Every once in a while they will cross paths as they "pretend play" and then realize, "HEY! You're here too! lets run together!" then they are chasing one another for a few minutes laughing and being silly. Suddenly a bug or a rock or a stick will catch one of their eyes and they scatter.. It is so funny! Needless to say they wore them selves out!
Then his little friend Brylee showed up, so it was just a fun day! Also, the park is on the water, and there were manatees there!!! Us mom's were very excited, but the kids weren't too moved by the "humps" in the water.
Saturday was a day of rememberance. It was Haley's (who got her wings on October 1st) 12th Birthday. Her mom and I are very close, and it kills me to see her family ache like this. They miss their little girl so much. Cheryl posted a beautiful essay that Haley wrote to her two days before she passed, it is on her website. Go check it out: www.caringbridge.org/ga/haley
Joey and I worked like dogs the rest of the weekend. Well Joey is probably rolling his eyes reading this, because HE really worked hard, I barely put in a 10th of the effort and am SO SORE! We did a lot of work in the yard. But it looks really pretty. A lot less muddy when we play outside! And now we can have friends over for a BBQ if we want. 
Oh and Aiden!! .. Is THAT why you come here? I guess I can tell you about his health! haha. This morning I was in the kitchen. I heard.. "sniff sniff.. sniff snifff.." This went on for a few minutes. I basically TIED myself to the kitchen trying not to run to him with every sniff he makes.. don't want to make him as nuerotic as me haha. SO I let the sniffing continue.. hoping it wasn't a reaction. The I hear "aa--chooo!" a sneeze.. then a cough.. Oh NO! I run in there and find Aiden on the floor in front of the TV. His eyes are all red, and his nose is running. "Sniff sniff!" Then I see red coming from his nose. Holy cow! Tell me he isn't having some kind of bleed.. (oh yes, I AM that warped folks) It only takes me a second and then I see the red play-do all over the table and floor. And on his hands... and YES, SHOVED UP HIS NOSE! No reaction today, just play-do shoved up his nose. HAHA! I laughed (which I know is totally not a good idea) and get a tissue. LOTS of play-do. LOTS. YUCK!
SO no reactions.. NOT ONE HIVE since the fourth day he was on the high dose steriods. YAYYYYYY He is doing terrific! SO terrific in fact, I forgot to do his labs!! A first ever since he was born! I just think we are having so much fun and doing so good, that I actually forgot about bloodwork! Praise God! So health-wise he is great, I am getting labs drawn on Friday morning.. maybe thursday we will see.
Well, have a good week!
Love, Lisa, Joey, Aiden and Mason (aka "stinker butt" and other gross names Aiden calls him)
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November 4th Update:
6 weeks old
Looking at Baby Brother
I discover a hidden secret.
So small and helpless,
Can’t even hold his head up yet.
What was I doing,
When you were this young age?
Was it watching you coo?
Or Making you safe?
I think back with sadness,
I feel I CAN do that now,
You got ripped off my little one,
I see we both missed out.
I count biopsies, and needles,
Parents who were not there.
We were busy crying and grieving
Things we just could not bear.
Behind a hospital mask
They say your name.
“Just a minute more?” I ask.
“It’s time to go”, they say.
How do I hand you over
To someone I don’t know?
This wasn’t in the parenting books!!
I just can’t let you go.
They said if it wasn’t THE disease,
Surgery would be finished in minutes.
Hours go by…………………….
………………………………….
I have learned a new emotion.
I feel something for the first time, it is hatred.
It wasn’t for a person; it was to a thing.
A disease called Biliary Atresia, I hated that name.
Aiden, you are loud and laughing as I write this.
You are full of life and God’s Grace.
In the past three years,
I learned another new emotion
Some call it acceptance,
But I call it FAITH.
Thank you, Baby Brother
I didn’t know until today.
You showed me a secret,
What I should have been doing that day.
He is just 6 weeks old,
just like you were
He has no scars,
He has no pain.
I am sorry my Big Boy
You ever had that day.
Thank you God for showing me though,
Just how it SHOULD be at this age.
~~Love Mommy
******************************************
Aiden had his Kasai surgery, and diagnosis at just 6 weeks old. Now here I am holding Mason. Baby Brother is already my teacher. How wonderful that my two sons have taught me so much. I love you my two boys. Mommy loves you both so much.
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Friday, November 4, 2005 9:41 AM CST
6 weeks old
Looking at Baby Brother
I discover a hidden secret.
So small and helpless,
Can’t even hold his head up yet.
What was I doing,
When you were this young age?
Was it watching you coo?
Or Making you safe?
I think back with sadness,
I feel I CAN do that now,
You got ripped off my little one,
I see we both missed out.
I count biopsies, and needles,
Parents who were not there.
We were busy crying and grieving
Things we just could not bear.
Behind a hospital mask
They say your name.
“Just a minute more?” I ask.
“It’s time to go”, they say.
How do I hand you over
To someone I don’t know?
This wasn’t in the parenting books!!
I just can’t let you go.
They said if it wasn’t THE disease,
Surgery would be finished in minutes.
Hours go by…………………….
………………………………….
I have learned a new emotion.
I feel something for the first time, it is hatred.
It wasn’t for a person; it was to a thing.
A disease called Biliary Atresia, I hated that name.
Aiden, you are loud and laughing as I write this.
You are full of life and God’s Grace.
In the past three years,
I learned another new emotion
Some call it acceptance,
But I call it FAITH.
Thank you, Baby Brother
I didn’t know until today.
You showed me a secret,
What I should have been doing that day.
He is just 6 weeks old,
just like you were
He has no scars,
He has no pain.
I am sorry my Big Boy
You ever had that day.
Thank you God for showing me though,
Just how it SHOULD be at this age.
~~Love Mommy
******************************************
Aiden had his Kasai surgery, and diagnosis at just 6 weeks old. Now here I am holding Mason. Baby Brother is already my teacher. How wonderful that my two sons have taught me so much. I love you my two boys. Mommy loves you both so much.
******************************************
Please please pray for my dear friends this weekend. Tomarrow is Haley’s 12th Birthday. She is eternally 11 years old in Heaven. She never made it to this special day. Her parents and family miss her terribly. Tomarrow Joey, Aiden and I we will be letting 2 balloons go. One yellow and one pink.
I hope, my little friend Haley, those balloons fly all the way to your new home. God bless the Vincent Family. Hold them tight in your prayers. www.caringbridge.org/ga/haley
Love, Lisa
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Halloween 2005:
It started at a wonderful party at a friend's house. All of Aiden's play group was there. Some I hadn't seen in a while, but it was great to get together with them. I will say they were the cutest collection of pumpkins, super hero's, doctors, fairies and other wonderfu things. The kids played and laughed and then we hurried onto my mom's house. Family tradition. Aiden was so precious. He sat at the dinner table at my moms and said, "Everybody I wanna say somethin.. This was the bestest Halloween ever!" We all awed and oohhed.. looking at his sweet smile. He was glowing. I almost cried just so thankful he is so unaware of the pains Joey and I take to make him just be carefree and happy on a day like that. He didn't know about the bendryl we had in our bag, and that as we walked from door to door I clutched the epipen like it was my life-line. 
There he was in his awesome Buzz Lightyear costume, with the laser beam glasses that Mimi splurged on, and he would shuffle his way up the nieghbors sidewalks, waiting patiently if there was another goblin or ghoul there before him. He then held out his little arms saying Trick or Treat, and then followed it every time with a shout over his shoulder, "I LOVE YOU!" to every unsuspecting person who delt him out his candy.
When we got back to my mom's house, Joey took Aiden into another room, and I did the switch off of the bags. Waiting for him was a bag I made for him, with little toys, whistles, snakes, stickers, and other goodies. He squealed with excitemtent as he dumped out the pumpking bag on the floor as he saw his suprises he got. It was wonderful. Perfect execution, and Aiden never missed those peanutty treats covered in chocolate. Although I was eyeing them like the chocolate addict I am. Darn diet!
All of these wonderful things got me pondering and wondering, Why is it that I have wanted so bad for him to be "just like others"? Isn't it just God's perfect will and design that Aiden is this special?!? I sit and think about the other night, (normally I run at the mouth about these things to my friend for hours, but she is on vacation.. bet you are glad you missed this one Kel) And I finally come to the same conculsion, I always come to after days like this. I am SO LUCKY! I wake up every morning, sit at my computer groggy, grouchy and just tired. Then comes around the corner, my puffy eyed little boy. No matter how grouchy I am I always think ,"Another day with my child, thank you Lord!" 
Yesterday I sat and watched Aiden in the back yard. He sat there with the hose making the "Mucky Muddy River" so he could have his dinasour toys splash as they saved the pretend animals with Diego. (his newest favorite show) I got tears in my eyes because all of his doctors said 3 years ago, that his first Birthday may never come. Get Dirty Aiden! I love to see the mud built up in his stubby toe nails. When he was diagnosed, this was not what I imagained a liver transplant kid looking like. I never thought it could be so precious!
I sat on the phone with one of my best friends. She is home mourning the loss of her WAY too perfect daughter. I listen to her and think: For Haley I will let him play like that in the mud for a little longer; For the liver donor who died at such a young age, I will let him get the floors messy as I walk him to the bath; For the days on ventilators and liver biospies, and IV sticks and CT scans, and more and more and more torture, I will let him stay in the bath tub for just another 10 minutes.
SO (you are probably thinking,) was it just Halloween that has me feeling so crazy? Nope. I feel like this everyday. (my friends can vouge for my craziness haha) But when days like Halloween, or Birthdays, or milestones come and go... that makes me want to share with everyone the secret I have learned being a mommy of a "special" child. A mother of a sick child. The secret is, I won. I am the luckiest Mother ever. The luckiest person to have been taught this priceless lesson. So I hope you all had a Happy Halloween. If you have little children I hope they were full of the same wonder and happiness mine was.
Love, Lisa
(Ps/ here is the Mason-a-sourus, this is not a happy dinasour, but he was SO cute!)
Wednesday, November 2, 2005 8:54 AM CST
Halloween 2005: It started at a wonderful party at a friend's house. All of Aiden's play group was there. Some I hadn't seen in a while, but it was great to get together with them. I will say they were the cutest collection of pumpkins, super hero's, doctors, fairies and other wonderfu things. The kids played and laughed and then we hurried onto my mom's house. Family tradition. Aiden was so precious. He sat at the dinner table at my moms and said, "Everybody I wanna say somethin.. This was the bestest Halloween ever!" We all awed and oohhed.. looking at his sweet smile. He was glowing. I almost cried just so thankful he is so unaware of the pains Joey and I take to make him just be carefree and happy on a day like that. He didn't know about the bendryl we had in our bag, and that as we walked from door to door I clutched the epipen like it was my life-line.
There he was in his awesome Buzz Lightyear costume, with the laser beam glasses that Mimi splurged on, and he would shuffle his way up the nieghbors sidewalks, waiting patiently if there was another goblin or ghoul there before him. He then held out his little arms saying Trick or Treat, and then followed it every time with a shout over his shoulder, "I LOVE YOU!" to every unsuspecting person who delt him out his candy.
When we got back to my mom's house, Joey took Aiden into another room, and I did the switch off of the bags. Waiting for him was a bag I made for him, with little toys, whistles, snakes, stickers, and other goodies. He squealed with excitemtent as he dumped out the pumpking bag on the floor as he saw his suprises he got. It was wonderful. Perfect execution, and Aiden never missed those peanutty treats covered in chocolate. Although I was eyeing them like the chocolate addict I am. Darn diet!
All of these wonderful things got me pondering and wondering, Why is it that I have wanted so bad for him to be "just like others"? Isn't it just God's perfect will and design that Aiden is this special?!? I sit and think about the other night, (normally I run at the mouth about these things to my friend for hours, but she is on vacation.. bet you are glad you missed this one Kel) And I finally come to the same conculsion, I always come to after days like this. I am SO LUCKY! I wake up every morning, sit at my computer groggy, grouchy and just tired. Then comes around the corner, my puffy eyed little boy. No matter how grouchy I am I always think ,"Another day with my child, thank you Lord!"
Yesterday I sat and watched Aiden in the back yard. He sat there with the hose making the "Mucky Muddy River" so he could have his dinasour toys splash as they saved the pretend animals with Diego. (his newest favorite show) I got tears in my eyes because all of his doctors said 3 years ago, that his first Birthday may never come. Get Dirty Aiden! I love to see the mud built up in his stubby toe nails. When he was diagnosed, this was not what I imagained a liver transplant kid looking like. I never thought it could be so precious!
I sat on the phone with one of my best friends. She is home mourning the loss of her WAY too perfect daughter. I listen to her and think: For Haley I will let him play like that in the mud for a little longer; For the liver donor who died at such a young age, I will let him get the floors messy as I walk him to the bath; For the days on ventilators and liver biospies, and IV sticks and CT scans, and more and more and more torture, I will let him stay in the bath tub for just another 10 minutes.
SO (you are probably thinking,) was it just Halloween that has me feeling so crazy? Nope. I feel like this everyday. (my friends can vouge for my craziness haha) But when days like Halloween, or Birthdays, or milestones come and go... that makes me want to share with everyone the secret I have learned being a mommy of a "special" child. A mother of a sick child. The secret is, I won. I am the luckiest Mother ever. The luckiest person to have been taught this priceless lesson. So I hope you all had a Happy Halloween. If you have little children I hope they were full of the same wonder and happiness mine was.
Love, Lisa
(Ps/ here is the Mason-a-sourus, this is not a happy dinasour, but he was SO cute!)
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October 31st
Things have been a lot calmer since we stopped the higher dose steriods. Joey and I have never seen it make such a difference in him! But is is wonderful to have our boy back. Phew! Since he was so "active", and the weather was lovely, we did a lot of outside activities. We went to the park with his buddies, pumpkin patch, and then we went to Busch Gardens again. (season passes) 
He loves it. As most of you know he is slightly OBSESSED with Thomas the train, and when we get to Busch Gardens all we end up doing is sitting on their big train and making circles. But he loves it! Mason is also getting so big here he is just hanging out at the park the other day!
We have been trying to get a date to come to Atlanta, the issue being getting some time off of work. Joey is in the process of changing jobs. Please keep us in your prayers while we make this transition. But once we get this under way we will be heading to Atlanta, meeting with his transplant team, as well as the immunlogist at Emory. The good news in the short term is that the steriods really helped stop this flare. He is doing much better. But we can't go on for the next 20 years on all of these meds. we need to find out the source of the problem, and pray for a miracle cure.
Well life has been a little more normal and peaceful here, but I just ask you to keep my friend's in your prayers. Angel Haley's family is in terrible pain. They miss their little girl so much. I ache for them and we all have been so torn up about her passing. If you get a chance go to her site and read about this little girl's amazing life. You will be changed forever. www.caringbridge.org/ga/haley here is a pic of Haley and Aiden over three years ago. 
Last but not least: Halloween! Oh a nightmare of a holiday for parents of kids with life threating food allergies. BUT with the help of my parents, and sweet neighbors, we have a good day. I usually "stock" my neighbors with stuff that is safe for Aiden. (apples, fruit snacks, dum dum lolipops) and then he thinks he is so special to get to trick or treat. We will be attending a halloween party so pray that we are safe there as well. Aiden is going to be Buzz Lightyear and Mason is going to be a little dinasour. (Mason-a-sourus).
Also, here is a cute picture of Aiden and Hannah a few weeks back, doing what they do best... having fun!
I can't wait to share pictures of tonight. Have a safe Halloween to everyone!! Thanks for checking in on us. We so appreciate it.
Monday, October 31, 2005 8:28 AM CST
Things have been a lot calmer since we stopped the higher dose steriods. Joey and I have never seen it make such a difference in him! But is is wonderful to have our boy back. Phew! Since he was so "active", and the weather was lovely, we did a lot of outside activities. We went to the park with his buddies, pumpkin patch, and then we went to Busch Gardens again. (season passes)
He loves it. As most of you know he is slightly OBSESSED with Thomas the train, and when we get to Busch Gardens all we end up doing is sitting on their big train and making circles. But he loves it! Mason is also getting so big here he is just hanging out at the park the other day!
We have been trying to get a date to come to Atlanta, the issue being getting some time off of work. Joey is in the process of changing jobs. Please keep us in your prayers while we make this transition. But once we get this under way we will be heading to Atlanta, meeting with his transplant team, as well as the immunlogist at Emory. The good news in the short term is that the steriods really helped stop this flare. He is doing much better. But we can't go on for the next 20 years on all of these meds. we need to find out the source of the problem, and pray for a miracle cure.
Well life has been a little more normal and peaceful here, but I just ask you to keep my friend's in your prayers. Angel Haley's family is in terrible pain. They miss their little girl so much. I ache for them and we all have been so torn up about her passing. If you get a chance go to her site and read about this little girl's amazing life. You will be changed forever. www.caringbridge.org/ga/haley here is a pic of Haley and Aiden over three years ago.
Last but not least: Halloween! Oh a nightmare of a holiday for parents of kids with life threating food allergies. BUT with the help of my parents, and sweet neighbors, we have a good day. I usually "stock" my neighbors with stuff that is safe for Aiden. (apples, fruit snacks, dum dum lolipops) and then he thinks he is so special to get to trick or treat. We will be attending a halloween party so pray that we are safe there as well. Aiden is going to be Buzz Lightyear and Mason is going to be a little dinasour. (Mason-a-sourus).
Also, here is a cute picture of Aiden and Hannah a few weeks back, doing what they do best... having fun!
I can't wait to share pictures of tonight. Have a safe Halloween to everyone!! Thanks for checking in on us. We so appreciate it.
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October 23rd update:
STEROIDS!! We have a love/hate relationship with them. After doubling the dose last friday Aiden actually had one day with no reactions, yesterday!! He did have a little bump or two, but that is fine. So they are doing their job, but the havoc they wreak is awful. No sleep. Screaming and crying. The poor baby has cried ALL night now for three nights. Then in the day time his attention span is that of a flea. He is SO moody. But hey his appetite is great! Fortunalty we will be down on them on Saturday, back to our normal dose of prednisone.
The date for visiting Atlanta is not set. I will let you know what we decide. HUGS!
PS/ yes I know in the picture above Aiden's shirt is dirty with ketchup and other wonderful things, but take note on what it says: "Warning: I'm three and on steriods!" LOL The back of the shirt says: "Ask me about my liver transplant!"
October 26th
STEROIDS!! We have a love/hate relationship with them. After doubling the dose last friday Aiden actually had one day with no reactions, yesterday!! He did have a little bump or two, but that is fine. So they are doing their job, but the havoc they wreak is awful. No sleep. Screaming and crying. The poor baby has cried ALL night now for three nights. Then in the day time his attention span is that of a flea. He is SO moody. But hey his appetite is great! Fortunalty we will be down on them on Saturday, back to our normal dose of prednisone.
The date for visiting Atlanta is not set. I will let you know what we decide. HUGS!
PS/ yes I know in the picture above Aiden's shirt is dirty with ketchup and other wonderful things, but take note on what it says: "Warning: I'm three and on steriods!" LOL The back of the shirt says: "Ask me about my liver transplant!"
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October 23rd Update
Well well well.. Things are just getting hairy around here. I am sitting typing this while we are experiencing the beginnings of Hurricane "WILMA!!" (have to yell it like good ole Fred does). Aiden is not doing as well as he was. About 3 weeks ago Aiden had his flu shot. Since then he has been experiecing a "flare" in his immune system. He is a MESS! Every day he is either covered in hives, welts, or even having anaphylaxis. It is really scary. He isn't being exposed to ANY foods he is allergic to, and when he reacts it is all with no real stimulus! ONce he was just sitting playing cards with Daddy. The BAM his arm was covered in welts.
We will be heading to Atlanta very soon to see the team, and then the immunolgist. They doubled his steriods again for the next week to help. I don't know what is wrong with him. I know he is an usual case, and they say no one is like him. But that doesn't mean we can't take measures to figure it out. The transplant team is sort of sitting with tied hands. They are experts on ASPECTS of the immune system. They balance meds with the risk of infections and rejections, but this is sort of on the outskirts of their knowledge. So we see the fancy shamncy immuno guy. he says he has seen kids who have severe hyper Ige issues and hives and anaphylaxis to one or two foods. BUT never ever has heard of a child who is like Aiden.. WHat makes Aiden so different than your run of the mill allergic person? WELL, he takes the TREATMENT for all of this whacked out immune system and allergies daily with his powerful immune supression drugs. Yes his meds that he is on for his transplant SHOULD be making this issue GONE. They raise them and raise them and still he is in a life threatening mode!
So everyone is lost and confused. This leaves me taking pictures of him when he is flaring and just saving them. So I have figured I will post what he has looked like lately. They will be on his photo album page. Go check it out if you are interested.
My house has ZERO foods he is allergic to in it. (as of now there is none and hasn't been any for a while) Because this is the ONLY safe place he knows. If he can't feel safe here, then WHERE can he?? I wash the sheets, I eat NO dairy, beef, soy, peanuts, treenuts, etc.. I have been on a STRICT diet for 3 months so JUST IN CASE my breast milk gets on him (or anywhere) he doesn't get sick. I have made it clear to family when they come here that things have changed and we can't risk him anymore. SO AFTER ALL OF these measures.. he still goes into anaphylaxis, he is STILL covered in hives and rashes from NOTHING. Just sitting there! Reacting while sitting in the pool and playing. He does this every day! reacting while sitting on the couch. Once in my bed. Reacting while in his SLEEP!
Ok so please pray. I am just letting you all know I am just a little on edge.
OK so go check out the pics and see what we see. This is just one little example of what he looks like on a DAILY basis.
Thanks for reading this update. I know it isn't my usual, but let me just say. I will Give God the GLORY for one thing. He has kept this boy here with us this long. He has given us faith and strength and we are feeling lifted every day! Life is wonderful here in our home, but it still has it stinky scary days. SO Praise God for what wonderful blessings we DO have.
Love, Lisa
Ps/ Mason is one month old! Praise God for him as well, I JUST LOVE THAT LITTLE BABY!!! XOXOXOXO
****************************
October 16th update:
Aiden has had a pretty good week this week. By AIDEN'S accounts it has been GREAT! Although by mine, he has had some hard days with allergic reactions. One day in paticular this week has been very shocking. I knew he would have his battles in life, but I never imagined it would be AIDEN vs. MARKERS!! Aiden and he his best buddy Hannah went into his club house (the one from the Make a Wish foundation); I sent them up there with a pad and some washable markers. Hannah's Mommy and I sat and enjoyed each other's company when we began to notice how long the two had been up in the club house. Hmmm.... I don't know about other 3 year olds, but I know when Aiden is quiet we may have a problem. After some time, I see this shameful head pop up by the slide. I nearly have to rub my eyes because of what I saw. He was covered head to toe with marker. It seems that Hannah, wanted to make them "Kitty Cats" and out emerges the OTHER kitten. Hannah and Aiden covered. It was a moment I have spent going over and over in my head. And each time the smile grows wider and wider. 
then he was so tired he fell fast asleep! what a face!
I want to say, PLEASE be an ORGAN donor, because if it wasn't for this GIFT someone gave my son, I would never have this memory locked in my banks for ever. No matter how much time Aiden has on this Earth, I know that he is LIVING it to its fullest. Enjoy the pictures of him and Hannah!
********************
PLEASE KEEP ANGEL HALEY'S FAMILY IN YOUR THOUGHTS AND PRAYERS.. HALEY FLEW HOME TO BE WITH JESUS. www.caringbridge.org/ga/haley
Wednesday, October 5, 2005 4:19 AM CDT
Saying Good bye:
I am off to Tennessee to say good bye to our sweet song bird Haley. I will be leaving first thing on a flight this morning and will return tomarrow. The baby will come with me, but Aiden of course will not attend.
Please pray for Haley's family today and for a long time. I know that their grief is just too overwhelming. I am aching for them.
As days now have gone by since the news of her passing, I have sat and thought about many special memories. There are many tender, sweet and loving moments I have locked away in my memory box. Mainly those tender moments are with her mother. But through the days it is the sassy and funny Haley that I have missed the most. Man, she was HYSTERICAL! Her sense of humor was WELL beyond her age. She was so witty, she had me tounge tied all the time.
When she was about 10 years old, They came to Tampa to sing at an American Liver Foundation event. I had been writing a story or a chronical about Aiden and his liver disease and told Cheryl I wanted her to read it. Well being the flake that I am, Cheryl and I were sitting on her bed in the hotel, and She asks me, "Lisa did you bring the book?" I stare at her with a blank face scanning my thoughts on what book she was reffering to. Suddenly, while jumping from bed to bed, I hear Haley's very sweet yet SASSY little voice say, "WELL I GUESS WE CAN TAKE THAT AS A NO!!!" I looked at her and we all started laughing. She just loved to pick on me, and man I loved it too.
I met Haley when she was 8 years old. Her little pig tails and strawberry pink jumper said it all. She so beautiful and sweet. I love to remember her like that. She was so healthy looking, and no one knew the awful truths of what her disease was to bring her in the next few years. But most of all no one knew that out of that lupus/ autoimmune hepatitis wreckage would emerge a resiliant and gifted child. Haley touched so many and thought of others through out her battle. In doing so, lives have been changed forever. Mine being one. I am so Thankful for God to allow ME to know Haley. I wish she was able to stay longer. But today, I am just grateful I knew this child and family, so that I can say good bye.
Please pray for all of the family today. It is one that No mommy and daddy should ever have to live to see. The day they say good bye to their baby. Thank you.
Love, Lisa
Sunday, October 2, 2005 1:49 PM CDT
The saddest day I have known.
Our sweet song bird Haley has passed to Heaven last night. Haley died at only 11 years of age. She suffered for years from two very rare diseases, and now she has broken free from those chains that bound her. She is soaring into the arms of Christ. We love you Haley.
www.caringbridge.org/ga/haley
(above is a picture of Aiden and Haley 3 years ago next week)
Haley wrote songs that made people laugh, she sang them with her angel voice. She wrote songs for other children who were afraid, and she even wrote and recorded one for Aiden. "Hots" or "Aiden's song" She would sing about how he had to get his "bumble bee stings" (blood draws) and how his french fries from McDonalds always made it better. The song was precious. A gift I will have for the rest of my life.
We met Haley when Aiden was 6 months of age. At his sickest. Our families have become very close. PLease take some time to look at the pictures in the photo album on this site. It is a few I have of the two of these sweet friends.
We are bound to her forever. PRAY for her precious family I know they are aching in a hell I can't imagine. God bless them all.
Sadly,
Lisa Hawk
Saturday, October 1, 2005 8:50 PM CDT
Hello all!
Baby Mason is home. He is still jaundice but doing well. It is still just normal jaundice, but seeing that color on another child of mine, is still hard. Brings back a lot of memories, that I would like to be buried for ever.
Aiden is the happiest big brother ever. he is so patient and kind and gentle. No signs of jealousy yet.. so keep your fingers crossed. I am really proud of him.
I am actually updating this evening because one of my dearest friend's little girl is very very sick tonight. Haley is in critical condition, and needs out prayers. PLease please stop what you are doing and pray for Haley.
visit:
www.caringbridge.org/ga/haley
for her story and info on what to pray for. God bless and thank you.
Lisa
Sunday, September 25, 2005 7:09 PM CDT
Mason Grady Hawk was born on September 23rd at 4:21 AM. Aiden is finally the big brother he always dreamt of being. (or at least for the past 9 months haha) He was 6 lbs 15 ounces. 20 inches long.
I added some pictures to the photo page also. Please check them out.
Unfortunatly I am home, but baby is still in the hospital. He has ABO incompatablitly. Basically he is jaundice. NOT liver disease, just baby jaundice. Not fun to leave your baby in the hospital under the bili lights, but I know the outcome is is a good one. He is doing much better, got an IV because he was dehydrated, but he loks adorable and Aiden can't wait to have him home. ME TOO!
Joey and I are going back and forth to the hospital, so I can pump (feeds) and then we can feed him. Other wise he is under the lights and no holding now. Ohhhh and i want hold him so SO badly! He is so cute!
We are a very happy family. I will update when he comes home and is healthy and fine. Thank you for all your prayers. We are feeling on top of the world tonight.
Love,
Lisa, Joey, Aiden and Mason. XOXOXOX
Friday, September 23, 2005 6:41 AM CDT
Mason joined his mom, dad, and big brother to become the newest member of the Hawk family very early this morning, around 4 am!
He weighed around 6'13", and was, in Lisa's words "perfect".
She said the labor was difficult, and she was going to try and get some rest.
Thanks to everyone who has been praying and pulling for this special family.
WELCOME BABY MASON!!!!
Cheryl, Haley's mom
Sunday, September 18, 2005 6:50 AM CDT
Hello everyone!
At the request of a friend, I am going to give a quick update on ME! Well not really "me", I am nearly the vessle for Aiden's new baby brother. And let me tell you, I hope I can pry Mason out of Aiden's arms when he DOES finally arrive. I can't barely walk to the car, and back inside, with out having Aiden look at me with BIG ROUND eyes, "Mommy did you have Mason yet?!"
Yesterday Joey and I were leaving a store, and I had a sharp pain. It was probably a foot stomping on some vital organ, but needless to say, I gasped loudly. Aiden never een looked over, or missed a step. He said in this tiny little squeaky voice, "Mommy Baby Mason just said, 'I am baby Mason! I want out! Let me out!'" Joey and I just laughed and laughed.
OK so anyway. Thursday (yes THIS thursday) is the day! I am so excited they are inducing me at 7:30am on the 22nd. I have a chance to go on my own before then, but we know that by the end of the week I will be holding our newest family member in my arms. I am so thrilled and excited about having a new baby to love and cuddle and watch grow into his own person. So anyway, I will post an update or have Cheryl (Haley's mom) do that for me when he arrives.
Thanks for the prayers. Things have been going very well with all of us, and I can't be more grateful to God right now. I had just hoped one tiny thing when Mason came. I prayed and hoped Aiden would not be in the hospital and that I would not be torn that way. I am just so grateful that he is healthy (doing wonderfully) and that life can be normal during this time.
SO Next time you hear from me.... I should be skinnier!! and a new mommy. :D
God Bless,
Lisa, Joey, Aiden and soon to be Mason
Friday, September 9, 2005 7:10 AM CDT
Hello everyone!
Well Labs came back wonderful! And the best news was Aiden didn't even CRY!! This is is huge I was so so proud. Aiden's prograf level was 7.8 Nice and low. His liver enzymes are trying to mimick the old ones. Almost; but not quite there. That rejection did just confuse that little liver, but they are all normal and healthy. I just liked his old "freakishly low numbers".. But as we say: "Normal IS normal!" Aiden's CBC was good. I could tell that the cellcept was on board again cause it was a little funky, but nothing really that mattered either. So labs were a success and we will wait to re-draw in another month (technically three weeks from today cause it took me so long to update )haha.
Otherwise here at the Hawk household we are just preparing for the little Hawk bird to arrive. I This last weekend poor Joey was my very hard worker. He helped me do things I just physically can't.. AKA: pick things up off of floors, my tummy is SO big! The house seems ready enough. Although I know i can keep cleaning. It would never be clean enough.. I am NESTING for my HAWK baby.
The docs gave me thrilling news yesterday at my Ultrasound. I am NOT going to get a Csection of things stay the way they looked yesterday. He was head down, although not "engaged", and the fluid level actually went down 1cm. Not a lot, but we will take it!! I was very happy. That will help him stay standing on his head.
Aiden is just as thrilled as ever. I told him the doctors said they want Baby Mason to come in less than TWO weeks, and he said, "NO MOMMY!! ONE WEEK".. I am pretty sure he has ZERO clue what a week is. But it was cute to see him barter.
Anyway..Thanks so much for checking in on us. We do so appreciate you caring about our family. God bless!!!
Lisa, Joey, Aiden and baby Mason (coming very soon)
Thursday, September 1, 2005 7:13 AM CDT
Hello all!!
Was going to update you with lab results, but I will just tack them on when I get them. I wanted to let you know that things are great here with Aiden. He is doing very well. Next week he will start "cubbies", the Awanas program at our church. It is very exciting for me, since he has never been left for any type of class. They have arranged for us to be the snack provider so food allergies hopefully won't be any issue. The class is nice and small and his little friends in there are the ones he hangs out with in the nursery on Sunday's with. He will learn scripture and Bible stories, and I am just so happy.
I am getting very close to my delivery date, Mason will be here soon. They are planning on inducing me, because of the high risk pregnancy. Please pray for us. They are still doing ultrasounds weekly and we are just praying that Mason is born with no complications. I try to never say, "As long as he is healthy" cause that is ridiculous. I do pray he is healthy, but even if he isn't we will love him and handle whatever God has in store for us.
I am very struck by the horrors of Hurrican Katrina, I am just praying that there be no more suffering and that relief comes soon for all of those poor folks down there. I am just so sickened by these events. I am thinking of all the families in hospitals that are stranded with no power, sick and ill. I pray for all of them to have God's comfort right now.
Coming up in Aiden Land:
Today: Play with friends, then go to worship dance
Friday: Aiden is getting labs, It has officially been ONE MONTH since his last draw!! Friends coming over to play afterward.
Sat-Sun: GET READY FOR MASON
Monday: Rolex the dog is the patient. He is getting his teeth cleaned. Oh my! Rufus the cat is also unlucky enough to be vaccinated... haha
Wednesday: More ultrasounds and maybe find out the date of my induction!
and so on.....
Lots of love! Thanks so much for checking in on Aiden!!
Thursday, August 18, 2005 6:36 AM CDT
Hello everyone!
This is a quick update just wanted to fill you all in on our progress. It has been officially 2 weeks since Aiden's last blood draw, and you know what?! It won't be for another two weeks till he gets one!!! YAHOOOooooo I can't believe it! This entire year this little boy hasn't had this much of a break, and we are just jumping with joy!
Things are good here. Aiden had a miserable ear infection. I say miserable cause it LOOKED miserable, but he never really mentioned it. Go figure. Other than that we are having a good ole time. PLay dates with his buddies, and getting the house ready for baby Brother.
I went to my Ultrasound and they found a huge increase of the fluid. (I have polyhydroamnios) The baby looks good, and big, but the fluid is a complication we are watching very closely. Now I am getting ultrasounds every week. I have to say I am a little concerned knowing what the risks are. The little stinker is also breech. So we will see what God has in store for us. I am forced to "slow it down" some and rest a lot more. Bed rest is not required but they INSISTED I lay down as much as I can. "Feet up, drink water, and lay on my left side" So that is what I am doing in between chasing Aiden all over the place. haha
So just a brief update. Thank you for the prayers. We are thrilled about Aiden. He has had many allergic reactions over the weekend, seems the cellcept isn't working, but at this point traveling to Atlanta is just not in the near future. So we are waiting till baby is born and we will head up there as a family of 4.
lots of love!
Lisa
Tuesday, August 9, 2005 10:43 AM CDT
UPDATED: added new pictures!!!
Also just heard that Aiden can go to once a month labs! The first time this whole year! YAHOOOOOOOoooo!!!!!!!!!!
Hi everyone!!
Well let me just say that we had the best time on Sunday at the carwash!! Aiden was out there scrubbing tires and using the hose with all the big kids. The youth group at our church is just SO outstanding! They were so sweet and worked in the heat and then even it started to rain. Joey, Aiden and I were just so greatful!! I will post pictures very soon!! So thank you NEPBC Youth and all that came to get their car washed! We love you.
Also more great news! Once again Aiden's labs were PERFECT. He is doing great. He has been swimming in the pool, and going to a TON of play groups and play dates. Almost one a day! Phew I am tired. ON Thursday he is having his buddies come over to play again. I am looking forward to it!
I went to the OB today. The last we heard was great news about the baby, the fluid level had decreased 5 cm. That seems to be a lot I have been told. So we were so happy.. today I heard the heartbeat again, and it just marks one more week closer till we get to hold this little bun. I can't WAIT!!!!
We did do the dentist last week.. Ummm that was NOT fun. No Xrays could be taken he was too freaked, but he has NO cavaties from the exam. YAYHOOO The doc was sort of aprehensive because he is allergic to the cleaning stuff, and then the flouride and pretty much everything. I had to sign a million things and waivers and they STILL made my pediatrician fax over a signed consent from the doctors. After all of that, We had to hang out afer wards cause even with out any type of stuff in his mouth (except some pumice)Aiden had hives all over his face from something.
Then that leads me to Saturday. Yes another allergic reaction. It was scary and no fun. But Since everything else has been so great lately I am not gonna dwell on it. Life goes on.
I am also hoping we can maybe we can move to once a month labs, I would be THRILLED. I should hear back some time this week. And until then we are just gonna keep playing and having fun!!
Thanks for all the prayers and the awesome car wash!!
Love, Lisa, Joey and Aiden
Tuesday, August 2, 2005 3:00 PM CDT
Hello eveyone!
Just a quick update. Aiden is doing very good. He goes to the dentist tomarrow for the first time. YIKES... I am way more nervous than he is. He HATES things around his face.. I can't even imagine what he will be like tomarrow with them doing stuff to him. SO pray he isn't scared and does great!
Aiden also has a fundraiser this weekend so please come and get your car washed if you need to! It will be held in the back of our church, the youth has been so sweet to offer this idea. THANK YOU!! It was such a surprise to hear they were trying to raise money for him. It will be held after church and I believe there will be a BBQ or some type of food also offered. I don't know many details these angels are doing it with out really getting us involved! Email me for directions if you are interested in attending. :D
I went to the OB today and yet another praise, my fluid level decreased 5 whole cm's!! The smimming pool is now down grading back to a kiddie pool. This is great and reduces my risk of preterm labor. Also my blood pressure was normal. So I was really thrilled. The baby looks adorable and I can't WAIT to hold him and hug him. I know AIden is DYING to see him, he asks every day about "WHEN will Baby Mason stop growing in your tummy??" I told him, SOON!! Just about 7 more weeks. YAHOOOO
OK so all good news here.
Coming up in "Aiden Land":
Wednesday: DENTIST (YAY)
Thursday: Aiden is getting LABS.. the we will go to play group
Friday: playing at another friends house.
Saturday: Maybe a date with my husband, but probably just being lazy at the house.
Sunday: Go to church and then the CAR WASH!! YAHOOOOO
Sunday, July 24, 2005 9:06 PM CDT
***** New PHOTOS!! Check them out on his photo album!! ******
Update:
Well, I love good news. Aiden's labs on Friday were awesome. His liver is still happy as ever. That mean ole rejection never stood a chance against the power of prayer! haha And it looks like Aiden's CBC was as perfect as it has been ALL year. For the first time in months his ANC (immune fighting ability) was back to his normal range. He is still immune supressed, but it isn't that dangerously low level it had been. His bone marrow production is back to his normal and he isn't anemic. YAHOOOOOOoooooooo
We have been taking the cellcept now for about 5 days. He has done fine with it. No side effects yet, and hopefully it will stay that way. I am already feeling more confident about things; just having the break from the emergencies is nice. I go to the OB (Aiden calls it my tummy doctor) again tomarrow and I will find out about travel then. If it is a go then we will all be heading to Atlanta to meet with his immunolgist there.
Things happening in "Aiden land":
Aiden has been having a blast lately. He has gone to swimming parties, and birthday parties, and even has friends coming to visit all next week. Life feels "normal" again for us, and for this emotional pregnant woman it is enough to bring tears to my eyes. At his friend Michael's 5th birthday party this weekend (HAPPY BIRTHDAY MICHAEL!) Aiden was just one of the gang. Daddy and Aiden jumped on the jumpy-things (moon-walks) Slid down the big air slide. Ran around sweaty and had a blast! I was just loving seeing him back to himself.
As far as "Baby Brother" is concerned. Things look very good, although I am having contractions. (yes the real McCoy not Braxton-Hicks) Joey and I went on a date the other night and went mini golfing. It was a sight for very very sore eyes. Surely what was I thinking?? BIG pregnant woman in 90 degree heat, mini golfing in jeans and the wrong kind of shoes. Ughhhh.. Of course normally I would have won the game, but the baby was throwing me off balance. hee hee Joey beat me by AT LEAST 5 strokes. (won't admit to any more than that!) Needless to say.. it was not good for the contractions.
The docs tell me that having this "high amniotic fluid level" has one real draw back. It tricks my uterus into thinking I am full term. So pre term labor is common. They said if the contractions were more frequent than 4 in one hour, then off the the hospital. They can give me a medicine to stop the labor, and then ....BED REST. yeah sure, did I mention Aiden was 3 and running wild? SO needless to say the docs told me to "take it easy" and lie down when I have a contraction. SO mini golfing was just not the rigt idea for our date. HAHA There will be a rematch though!!
Things are GREAT here!! I am just so happy to update with such a great report. I do have some prayer requests and just want to thank everyone for praying for our family. We love you guys!
Prayer requests:
1) Natalie is still struggeling with her PTLD. PLease pray for strength for her and her family. www.natialiebear.com
2) "my" Haley girl has had pain issues again. Her meds have been decreased and it makes her joints hurt. Pray for God's perfect will with her on the list for a new liver.
www.caringbridge.org/ga/haley
Many hugs!!
The Hawk family
Monday, July 18, 2005 1:47 PM CDT
**** Quick update: I went to the OB and it looks like that I have a bunch of extra fluid but so far no signs of any problems with the baby. They are going to watch me closely with another ultra sound in 2 weeks, and I go back to the OB again this in two days. So we are just praising God for the good news and praying that all stays well with this new sweet bun. :-D
Update:
New pictures posted.. go check them out. (including one of Me and Mason)
I spoke to the transplant team today. They are putting him back on a pretty good size cellcept dose. 200mgs twice a day. They are going to have us draw labs on Thursday, check the prograf level, and his WBC count and his ANC, oh and also liver numbers. Kind of "funny" how the liver is on the back burner of my mind. I never would have guessed that a few years ago.
We are waiting for my OB to tell me about traveling to Atlanta. If they give me the OK, then we will probably go next week. If not then DADDY gets to do it on his own. What would I do while they were gone?? Eat bon bons and put my feet up?? HAHAHA Just the thought is weird to not go.
Well life is good here. Kind of stressful. I am feeling a lot of pressure from all the "excitement" lately (some call it trauma; I choose to say excitment)I think after tomarrow maybe I will be able to sit and chill. Just hoping that baby number two doesn't want to already be competing with his older brother for attention. Hoping for healthy and wonderful. But I know God is in control no matter what.
My church and the youth group is holding a fundrasier for Aiden on August 7th! After church they are doing a car wash/BBQ. Our family was SO thankful for this.
So off to go play with my little guy and finish getting the boy's room ready! YAY!!!
Upcoming this week:
Tomarrow: My OB appiontment with High risk
Wednesday: play date
Thurday: Another OB appointment; Aiden gets labs
Friday-Sunday: just relax and enjoy life!
Thursday, July 14, 2005 10:48 AM CDT
Another anaphylaxis. I am too pooped to go through the whole thing, just know it happened again. Here is the "summary": He was sleeping last night, we heard choking, vommitting, and then the drama continued. Aiden was alert and talking but He was swollen on the face, and blue on the bridge or his nose. We have a pulse ox here and his o2 levels were 92 and 93. I didn't know the magic number where Epi is given. We gave bendryl called our docs, and the on call doc was basically useless. Aiden did ok, Joey and I were convinced it was just "one step" away from anaphylaxis cause he was talking. But after a "firm" conversation with our doctors I have seen that, we are wrong about that assumption too. It was anaphylaxis since there was blueing, since he was wheezing. SOunds pretty obvious as I type this... NOTHING is obvious when it comes to Aiden and in the moment though. The good thing, is I don't feel like I did anything wrong, he is here with us today from the actions Joey and I took. But once again we will use this as a stepping stone for the next one. Yes.. the next one.
Plan of action: I have several calls into all different kinds of doctors. Mainly the transplant team. His "fancy shamncy" immunolgist in Atlanta said they don't have any appointments till Oct 26. Umm not waiting that long.. so I know the transplant team can get us worked in faster to see him. Right now medication and immunesupression adjustment is the next step. And it seems that the diagnosis of ideopathic anaphylaxis is possibly coming true. He would be one of 20 children ever diagnosed with it in the United States if he does indeed have it. Whoopie... More stuff to add to the baby book. haha
So anyway, We are plugging along. Trying to get back to get a play date with his buddies. As my horsey friends would say: "Eyes up; Kick on" so that is what we are doing. Still waiting to hear about when to do labs, but now they are probably adding a immunolgy panel again to them. So it will be interesting to see what is ticking in that little body of his. (Besides a lot of heart and personality).
Please keep us in your prayers as I know God is trying to lead us down a road to recovery, explaination, and maybe one day a normal life?? And if not, then we have faith that God's plan is perfect.. even if sometimes very scary. ((HUGS))
Coming up this week:
Friday: Having friends over to play
Tuesday: Level 2 ultrasound for tummy baby at the high risk OB
Wednesday: get labs for Aiden??
Thursday: Back to my regular OB to discuss "plan" and pregnancy
OK off to go read some more of that wonderful book of Job. Lots of love!
Lisa, Joey, Aiden, & (baby coming soon)
****************************************
Quick update:
Talked to the transplant team they are putting Aiden backon cellcept on a low dose. That was the drug taht caused the bone marrow problem a few weeks ago, but on the low dose they feel that it should be ok. They are also going to keep his prograf level lower, NOT take him off. (that cause a serious rejection) so at least we have a plan. They were obviously concerned, and seemed very eager to help lift this awful burden... But I know it is frusterating cause they and every doctor, hasn't seen a child like him ever. So, they are helping me move an appointment up to see the Immunolgist in Atlanta, and we will go from there. Keep praying for him!! THANK YOU.
Friday, July 8, 2005 12:25 AM CDT
Hello! What an exciting week. Phew I am glad it is over. Well heck it has been an exciting year. I wanted to update on Aiden's labs and how he is doing. The liver stuff came back great! His ANC is down a little, (little low from normal) so we will still maintain a little caution as we go on our daily life. Just good handwashing and staying away from KNOWN germies is all we can do. So over all labs looked pretty good.
I went for another Ultrasound and saw the next big boy. My due date got moved up to September 25th. (my actual calculations at first) Baby is big and growing. PLease say a little prayer, I am being sent back for another Ultrasound at the high risk center in a little over a week. I am not gonna give Satan any credit with worry, just praising God for giving me a new baby to love. So I will just wait and see what the doctors say when I see them. Until then.. prayers for the big tummy. :-)
Joey and I completed the boy's room and it looks fantastic! gotta go get that film developed.. gotta remember. It is so cute and Aiden is BEYOND himself with excitment to see Mason. (the new baby) that is ALL he talks about. Even carries areound an imaginary "baby Mason" in his pocket and on his shirt.. etc. Very sweet.
So things are ok here. I am just getting some much needed rest and am looking forward to the next week. I am not sure when we are getting labs again, hopefully we can space it out a little bit. It is getting tough to find veins on him, and emotionall tough on Aiden and MOMMY.
Prayer requests:
1) pray for Tanner still. he is having troubles with his ANC still. A lot worse that Aiden, very low for a very long time. Also Tanner's grandma is still recovering from an serious infection. www.caringbridge.org/ks/tanner
2) always haley.. prayers for that wonderful family www.caringbridge.org/ga/haley
3) Prayers for my new baby. No bumps with this one please.
Ps/ Happy birthday to little Hannah!! You are 3 years old!!
much love!!
The Hawk Family
Tuesday, July 5, 2005 8:09 AM CDT
OK enough already. I cried all weekend, and feel encouraged and strong today! Aiden is absolutly NO worse for the wear. He keeps asking me when he can go back to that fun park. The nice thing about lack of oxygen to your brain (if there is a nice thing) is that I think he just can't recall what happened. Either that, or he gets his amazing denial ability from me. hee hee
I wanted to thank you guys for the support you gave us, I know it has just helped me so much. As far as the "embarrassment" of what happened, I have been able to wrap my brain around that better. I want to clarify first that it isn't of AIDEN I am a embarressed, never! But I guess I was more sadddened that others had been scared in the events that unfolded. Well after thinking long and hard (all weekend) I think what it boils down to is, I AM SADDENED at the events that unfolded, and now that others have seen it, I can't bury that feeling any more.
You see, crying and feeling sad do not come easily for me. I just am so THANKFUL all day and everday for God's gift of Aiden that being sad about something is almost unnatural. I have a tendancy to bury some hurt and just focus on our blessings. But I think after looking in the eyes of Aiden's little friends, scared and afraid, I saw ME.
SO after crying at the breakfast table yesrterday morning, crying while I painted the walls in the boy's room, crying... (you get the picture) I feel GREAT! I am rejuvinated and strong again. Aiden, like I said, is resiliant and doing great. I am praising God for getting me hot. I know He couldn't get my pregnant behind off that picnic table bench with out lighting a fire, and so to speak.. he lit a fire. I could see Aiden playing, he wasn't far away, but I couldn't see the hives until I got a few feet closer. SO I am just praising God for that help. (ok tears coming again as I type this...)
Alrighty.. so the transplant team upped his prograf due to the reaction, and now we have to get labs this week. SIgh... SO This week I am going to get labs, and just keep on living like we are. Maybe even get another play date in while I am at it. Thank you for your prayers.
ON a very positve note.. The boy's room is finished! It is SO cute! I need to get some pictures and post it! It feels so good to look ahead to the future like this. YAYYYY
Much Love,
Lisa, Joey and Aiden (baby Mason coming soon)
Saturday, July 2, 2005 9:54 AM CDT
Aiden had a very scary experience yesterday, and I just thought I would let you all know we are in need of some prayers.
After being isolated from the low ANC for 2 weeks, yesterday I finally ventured out to play at a little park. They call the park "spray park" cause it has a bunch of cute sprinklers and stuff. Anyway, he had an anaphylactic reaction to, God knows what. Aiden was playing in the midst of the water and holding an orange bucket (about 30 feet away). I suddenly got really hot and went to get cooled off in the water. I take a few steps towards the water area and catch Aiden's face. He is swollen and red, and he is staring frozen. He is SQUEAKING out little tiny breaths and grunts. He is just frozen standing holding this bucket. I grab him, his tummy was covered in hives, upper lip huge and swollen, even bleeding in one little spot. (probably from clawing at his face to breath). I rush him back to our picnic tables and my girlfriends were all there. My hands were to wet to open the epipen, so another friend opened it. Another mom imediatly called 911, and I admistered the epi-pen injection in his left thigh. He cries out and almost instantly you can see him breathing and the hives just going down. All of my mommy friends with me were phenominal. Getting car keys, my cellphone, bags of stuff. It was so fast. From the second I saw him to the time he was injected with the pen was probably 20 seconds. I know it saved his life. (and that is the most haunting aspect)
He was more alert when the ambulance arrived and they took him into to access his vitals. After getting an IV started he had another horrible bout of anaphylaxis in the ambulance. The parmedics start grabbing a re-breather oxygen mask and I heard the word "clear air way." All I could do was imagine them intabating him in front of me. It was very scary. He recovered from that and at that point we were speeding to the hospital.
They gave him solumedrol (30mgs) I thought a cute little dose after all of his steriods from rejection. And he just laid there being monitored in the ER. My mom friends swapped out kids, got my car to me, and were a phenominal support.
NORMALLY, (like the past 8 times this has happened) I have bounced RIGHT back. But this time, I am just traumatized. I am feeling this weird embarresment and shame from it. I am just shameful that I dragged my friends into my world. I am embarresed that I can't keep up the "oh it is JUST allergies" game anymore. They saw it, they shed tears of their own. I feel bad that i have to step out of my own denial of what is really happening to Aiden. We don't know the trigger that set him off. And honestly, I don't know what to do. How many more times can he be this lucky/blessed? He has had 9 anaphylaxises. 9! "practice makes perfect" and I finally was good at assesing him and injecting him, with out second guessing or making an error. How can I be sure that WHEN Aiden has this happen again, he will survive? How can I be sure that WHEN this happens again, he is with ME! It has taken me making 8 mistakes and finally doing it right on the 9th. What if the next person he is with doesn't have the oppertunity to make a mistake.
The doctors said that the stress on his heart from the respitory arrest, and the lack of blood to his brain is very serious. In other words, we just can't keep this up. I am beyond greived that, I have to admit... It isn't just allergies. It is very serious, and I am scared. I can't erase the vision of him and that look in his eyes. Unable to breath, and just terrified.
I really don't know why I am sharing this on my journal, but I guess so others know that we need some prayer. I do have so much faith that God loves Aiden and that he is going to complete HIS will. But I just am not sure what that will is. I just am not sure.
I am THANKFULLY surrounded by the best Mom's in the WHOLE World. My friends in my Mom's club/ play group are amazing. They all do EVERYTHING in their power to make it safe for Aiden. I never have to ask, they are just so caring and giving. I feel so lucky to have them there yesterday. THANK YOU LADIES!
Just pray for us and pray that he is healed from this problem he has.
Thursday, June 30, 2005 12:47 AM CDT
Hello ALL! Well its a time to celebrate. Aiden's labs came back excellent today! Looks like they have him on the perfect balance of immunesupression. Not too much so he doesn't have that bone marrow problem, and not too little so he doesn't reject again. Today his labs looked great! His WBC is almost right where it was before, as well as his ANC. All in the normal range. They dropped his dose of prograf (anti-rejection meds) and his liver is doing great with that dose! ALL liver functions are normal FINALLY! And his kidneys are happy too! (they took a little hit from the drug over dose we had)
I have been on house arrest for the past few weeks since this began, and tomarrow, I am GOING OUT! Aiden and I are gonna play with his play group for the first time in a while. I am thrilled! The docs feel his immune system is strong enough, and we are going for it! Of course I will bring a lot of clorox wipes, and hand sanitizer because of MY fear. hee hee. But that will go away soon enough.
I am hoping that his transplant team will let him go out to every two week lab draws. He has been on once a week (at the minimum) since FEBUARY! Once every two will be a nice break for him. (ME TOO) He deserves it. At three years old, it is hard to explain why Mommy keeps making him have boo boos. I tell him it is so we know he is healthy, and he say, "BUT MOMMY! I'M NOT SICK!" Of course I smile, cause that is what I want him always to feel. I want him to know that he isn't sick, he is just special. God just likes us to check on him a little more often.
This weekend is the mark of my third trimester and to celebrate it, Joey and I are getting our hands dirty. Yes doing the nursery. Aiden and Mason will be sharing a room and that room will be, what is now, MY current bedroom. It is a little bigger, and The two beds will need the space. None of us can wait, Aiden loves to feel his baby brother in my tummy. He plays "imaginary baby" games all the time. He cups his hands and holds an invisiable baby. He kisses it and loves it. I think he is going to be a precious BIG brother.
Thank you all for checking in on little Aiden. I am so grateful for all the love and support. After being a mom of a child with chronic illness, I have come to learn a few things. 1) it is all out of my hands. No matter how much I THINK I know what will happen or SHOULD happen, God's plan is more perfect 2) when other's say "I am praying for you" I know it is the reason I am so lifted and at peace. 3) and that although this world is nothing like I thought I would be living when I was carrying Aiden in my tummy, I am grateful for every second I have in it with my loved ones.
Prayer requests:
1) Please pray for little Haley. She is doing well right now, and we just want to ask God that he gives them peace and healing. please visit www.caringbridge.org/ga/haley
2) natalie is still fighting with her new diagnosis of PTLD (a type of lymphoma/cancer that transplant patients get) Pray for her family and for her to beat this quickly. www.nataliebear.com
3) Malcom is improving slowly, but needs our prayers. He is a TOUGH little baby. Born at 26 weeks he has been through a tremendous battle to live. I know he will make it home soon after he gets past this latest hurdle! www.caringbridge.org/ga/malcom
4) also pray for my Dad who has been struggling with lung disease, and my mother in law is recovering from reconstructive surgery from her fight with breast cancer.
God bless! ANd have a beautiful Independance day!! I know I am feeling so "FREE" knowing Aiden is home and healthy again. ((HUGS))
Lisa, Joey, Aiden and soon to be...Mason (only 3 months till he is HERE!)
Friday, June 24, 2005 12:04 AM CDT
(tuesday brief update) We haven't gotten labs yet this week, I will hear today when they want us to get them, but I wanted to add something to my update. Another prayer request. I will update with Aiden as soon as I get labs. Just please keep little Malcom in your prayers:
Prayer request: I have a friend whose little premie baby has struggled a lot in the past months. He has developed several infections and needs our prayers! He was just about to finally go home. PLease pray for this little baby. Also pray for his family, and that they find the strength to keep fighting for the long haul. Thank you! Here is his website: www.caringbridge.org/ga/malcom
Here is the previous update from Friday:
YAY for lowered immune supression! Aiden's bone marrow is in high gear! It is sending out lots of new cells and making him strong and healthy again. Ahhhh ok so I am going to show you how much better his labs are since Tuesday. ON the left will be Tuesday and on the right will be todays labs:
White blood cell:_____(tues) 2.4_________(fri) 4.73
Hemoglobin :__________(tues) 9.2_________(fri) 12.5
Hematocrit:___________(tues) 25.9________(fri) 36.7
ANC (**infection fighting) (tues)450_____(fri) 1160
platlets _____________(tues) 43__________(fri) 213
OK so even if you are looking at this and saying HUH??? you can see that in just a matter of days his bone marrow went from WAY TOO low to much higher!!
Basically he is going very good. We are still on a precaution and I will find out when we get labs next to see how much better it is. I am just so happy for such a quick return on his numbers. He was just way too supressed.
SO thank you and praise God for protecting him! YAYYYYY
Love, Lisa
Prayer requests:
1)Prayers for Aiden's friend Haley: www.caringbridge.org/ga/haley Although she is doing pretty good right now, I know that she and her family need to be covered in prayers. They are very special to us.
2)Little Natalie has developed a condition called PTLD. This is a type of lymphoma (yes cancer) that transplant patients can get. She is just a special little baby and I know she needs your prayers. website is: www.nataliebear.com
Also little Anthony, Tanner, and baby Malcom. THANK YOU!!
Wednesday, June 22, 2005 11:11 AM CDT
Holy cow!SO here is the quick run down of the events of the past few days. I couldn't update cause Joey flew home a few nights ago,and coming to the library to update was NOT gonna happen by my little 3 year old gate keeper. BUT we are actually flying home today!!
I found out on Monday late, that Aiden's prograf levels got majorly over dosed in florida, so it probably helped his WBC spiral out of control. THAT is NOT a drug that should be Over dosed, it is can have very deadly outcomes, But he was being protected by God,and just managed to only have some short term side effects. SOOOOO once that error was caught, Atlanta massivly reduced all his meds, and even took him off his cellcept (yay) to give his bone marrow a boost. Yesterday his labs were HORRIBLE and it just seemed we would never leave. BUT Then today......
Labs really began to rebound and we cancelled his PICC line placement and begged to go home!! I am thrilled. I can't wait to sleep in my bed!! Aiden did great, except during the Over dose, he handeled it as well as expected. He is MUCH more frightened of the hospital than before, a lot of tears, and "GET OUT!" were screamed at the poor people who drew his blood. He was like a pin cushion. SOOO many bruises and pokes. for two days he had three blood draws a day!! SIgh
BUT he is resiliant and brave, and is SOO happy to be flying home to see Daddy!! He will have to be on a careful watch at the house. Frequent lab draws, and won't be able to play and go out in the "general public" for a little. But hopefully once his labs go back to where we are comfortable, I hope to say this will be our LAST hospitalization of the year. OK God, that was a specific request. Only hospital we wanna see is when Baby Mason comes.
OK so praise God we are coming home!! YAHOOOOOOOOOO
Thanks so much for all the prayers. ((HUGS)) XOXOXOXOX Ps/ his liver looks AMAZING! NO rejection at all!!!!
Love, Lisa
Sunday, June 19, 2005 12:26 AM CDT
We are here!! Thank you for praying about the plane ride. It went ok, but it seems that everyone was JUST let outof school; went to Disney; and took OUR flight back home. Geesh I had to laugh there was a MILLION kids, drooling and sneezing. But Aiden wore his mask and slept the whole time. We didn't arive into our hospital room until almost 11:00, it was a long day. But once there we all nestled into our cots and couches, and slept ok.
Labs today were just a LITTLE worse. His platelets are even lower today, as well as the WBC, and the nuetrophiles. Basically the verdict is: Aiden got exposed to some virus. This virus got into his bonemarrow. (our bonemarrow is where we produce our new blood cells) because he is on a lot of drugs that already effect his bone marrow, it just made for a mess. The hepatolgist said he could feel the tip of Aiden's spleen. So it is slightly enlarged, but he said he expects that with whatever virus that attacked him. They are running viral titers in the AM. EBV, CMV, Parvo b-19, and some other stuff. He is active and acting pretty normal, although a little whiny. But who wouldn't be?? I know I am! Although not really I feel pretty good considering this is all gonna be resolved relativly quickly.
So that is about it for the CBC, BUT.... DRUM ROLL....Liver looks great! After 2 months from the rejection, numbers are FINALLY normal! (yes that is a little longer than my orginal "oh it only will be a few days with this rejection" theory) So they said this will give them more room to change his imune supression around. If he was still having some of that rejection, they would not be so keen. So all is good in that department.
Transplant is a tedious thing. You have to constantly balance out the need to supress the system so it doesn't attack the new liver, but you can't have them too supressed cause then these common cold viuses can be deadly. Thankfully medicine has advanced so much, that there is fast ways to fix issues, giving children like Aiden longer lives.
Thank you for your thoughts and prayers! I feel very lifted and confident. The docs were very confident as well, they will get this undercontrol. So I will update you tomarrow with new lab results and news. Take care!!
love, Lisa
Saturday, June 18, 2005 12:44 AM CDT
Off to Atlanta.....
Aiden's blood cell numbers took a plummet over night. The type of WBC that we all have that prevents infection is dangerously low (Absolute nuetrophile count). He doesn't have the immune fighting abilities that he should. His bone marrow has some type of virus in it that has stopped it from producing more cells. Basically the "little soldiers" that are his immune system took a really long lunch break. This paticular issue has never happened to us like this, I guess it can be pretty dangerous. SO he is on a strict NO visitor rule until we are notified. He will probably get a few doses of a drug called nuepogen ?? to boost his immune system.
I am very confident they will correct this with ease. They are masters of the immune system and know the perfect balance between supressing him so he doesn't reject, and giving him enough immune system so common viruses aren't life threatening. Somehow Aiden's balance is off, so they will fix it.
Thank you for your prayers. It is so "funny" how much this year has reminded me of 2003. We were in and out of the hospital for 200 days of that year. It was so tough on us all, but you sort of get "used to" getting back on the roller coaster. Bumps happen, that is life for everyone. We are still just SO grateful we have him and there are fixes.
Lots of love,
Lisa, Joey, Aiden, and Baby Mason coming this fall.
Friday, June 17, 2005 8:20 PM CDT
Well, today was interesting. Feel like we rode a gamut of emotions. Once I was riding the waves of one emotion, the next would flow in unexpectedly. I am not THRILLED about some of the issues this past day, but nothing life altering. Basically there was a big error made and some little ones.
Aiden was admitted for possible sepsis. The orders were written very clearly to draw a blood culture asap when he got in. That way they could then start him on some heavy hitting broad range antibiotics to cover any possible blood infection. Last night I went home and Joey stayed with Aiden. To all of our dismay they did NOT run the very important blood culture at all! Instead they started pumping him full of his antibiotics and mosied in this morning after TWO doses to do a culture. What, you ask, is the big deal? Well, it totally null and voids the culture. So we have NO way of knowing if he has sepsis, or even if something will grow, because the antibiotics cover up all results. Geesh. (might I add he probably does NOT have sepsis, but medical proof of that would have been nice..sigh)
OK So I get a call from our Doc in the AM and she is steaming mad about this, but then says, "Well we will just look at him symptomatically and see how he is." I look over at him. He seems lovely. Quiet, but smiling. I tell her. We hang up and I feel ok with the error. Immediatly about 5 minutes later, Aiden begins projectile vomitting. YIKES! Good feeling gone, now feeling horrified. Aiden begins to be mopey and puny for a few hours, I worry during the entire time, SURE it is sepsis and bad things will happen, until My dad comes in. He brings Aiden a teddy bear that sings and dances, and then Aiden comes back to life. OK So now Good feeling BACK. Aiden is perky and wonderful, I get labs results in, and they mildly improved and the good feeling stays.
It is past lunch, and Aiden's doctors comes in. She is still fuming mad about the culture, but then imforms me they also wrote for fluids to be run. She says, I would not look at the labs today as very accurate because he was probably somewhat dehydrated. Good feeling gone. Sigh... Are you seeing a pattern? Do i sound as crazy as I feel sometimes? HAHA
The rest of the day unfolded like this. Aiden was perky although becoming unruly. My mom was so sweet and showed up with a Nemo baloon, and got on the hard floor and played trains forever with him. He is in totaly isolation can't leave his room, so that makes it a little more tough. But at this point, life was good in Aiden-land. Then his precious friend Hannah came to visit and Mimi (my mom) brought the cake that I WAS gonna bake, but she ended up doing it (THANK YOU!!). Life was wonderful again for HIM, although I am exhausted and frazled. Sigh
Aiden's prograf came back at 23, and that is ENTIRELY too high for a kid with "something" going on. so they dropped his dose. down 1 mg. He is now on 3 mgs' 2x a day. Still 3x his usual dose. But they don't want to risk any rejection. And neither do I! So with the super high level of drugs this explains the wild 3 year old I have been dealing with. But alas, his father comes in and in a few minutes of his visitors leaving he is asleep in Daddy's arms. OF COURSE! I get to be the 3 year old's entertainment, displinarian, chaser-arounder, for 12 hours and Daddy gets the sleeping baby. SIgh.. I know THIS is what Motherhood is REALLY about.
So you all are wondering why they heck is she babbaling?? Basically: I know nothing. He IS improved. But is it because he has received heavy hitting drugs? Or because he is truelly better? We won't know cause of the lack of the blood culture. He is still in the hospital, we are getting labs tomarrow as usual. They are also running a few Viral tests. So I will know more later.. Or not. Hopefully the ideal would be go home tomarrow with oral antibiotics, and just sit and watch him at home.
Sorry about the long drama update, but you might be able to see a tinge of pregnancy hormones in there too. HAHA. I love you guys. Thanks for the prayers! And thanks to our sweet visitors today. I loved having you. Keep on praying, I know it always works! The good Lord hears our hearts requests. HUGS!!
Love ya! Lisa
Thursday, June 16, 2005 3:22 PM CDT
Quick Update: Being that my tummy is getting a little too big for a fold out chair, I came home to sleep and Joey is sleeping with Aiden. We will switch off very early in the AM. Tad bit of info, it looks to be that he has caught something viral, it has gotten into his bonemarrow, and his meds that he takes are supressing his system a little too much. So we will see what the plan is tomarrow. They were VERY successful getting an IV started, Praise the LOrd! So he is getting hard hitting IV antibiotics, and they will be doing blood cultures to double check the septis, and his labs. SO that is what I know. Below is the orginal update: ((HUGS))
earlier update:
SO sorry it has been so long since I updated.. things have been hectic here. I jsut wanted to let you know the latest: We are heading back into the hospital in a few minutes. (in florida) Basically with out being too medical his CBC has changed a lot in a few days. They think he is either 1) septic, or 2)his bonemarrow is just getting way to supressed from some virus/ bacteria and all these drugs. He is still on a TON of prograf, max dose of cellcept (I think the cuprit) and steriods. Yuck.
Ggt is looking good at only 22 but the ASt and ALT both doubled. But still not biggie liver-wise. Of course showing that just "something" is going on. So basically we are getting some IV antibiotics, fluids, blood culture, and the stuff. I am sure we will be out in a day or so. But they want to be agressive with this high fever and low WBC.
If he is septic this will have been his third time in his life. Ugh... But the tx team said that the kind of immune responce he is showing is so typical of him. his immune system is just so dang strong. SO that WOULD be good exceptin his case it is the oppisite. Hi little immune system that thinks FOOD is the enemy... and the liver..and sunlight) haha OK
Well, I am gonna bake him a cake, and then we are going into the hospital. He has had nothing to really eat or drink the whole day and he wants a cake. And YES, I am gonna do it. SO there. No, I know, I don't win mother of the year award, but oh well. Something to eat is just want he needs. Plus he has been to a birthday party a few days ago, and saw me eating cake the other day. It is HIS turn. (yes those are all excuses I am telling myself to make his cake. Boo hoo I just want to make it cause he is sick)
Anyway, just say a little prayer that this is just a bump that is nothing. He WAS gonna have a play date with his best buddy Hannah tomarrow, and he is SO SAD he can't see her. :-(
Lots of love!!
The Hawk family
Lisa Joey Aiden and baby Mason (coming this fall) haha
Tuesday, May 17, 2005 8:30 AM CDT
CAN WE SAY DOUBLE DIGITS!!
I am so happy to report Aiden's labs are just doing awesome!! Now TWO liver enzymes, are NORMAL and the GGt is 91!! YAHooo that is not normal, but hey it is double digits! I am so relieved. It looks like we avioded any long term damage, and maybe will back to "normal" in a month or two!!
We are ready to have this IV out. But he doesn't mind it so much. He calls it his, "straw". Now his little friends talk about his special straw too. Kind of cute in a warped weird way. haha If it were me though, I would be sucha whiner. I know it is uncomfortable, and it itches, and he can't play like he wants to.. but he just trucks on. I am really really proud of him. He is just a dream chiild.
Life is getting back to normal. My friends from Aiden's playgroup, sent a maid service to our house to help out, and dinner has come every weeknight since we have been home. The support has been so wonderful. I still haven't finished unloading my car. I am not superstitious, but I just have seen the pattern of.. unload the car = back to Atlanta. haha. So I think today I am feeling that I can unload it with confidence.
Aiden gets labs tomarrow, his prograf has been runnung high and he acts it, but it is helping those numbers so we take the good with the bad. I will update asap when I get new labs back. Thank you for the prayers and love and support. God is GOOD!
Love,
Lisa, Joey, Aiden and "baby Mason" coming in the fall
Friday, May 13, 2005 1:03 PM CDT
Well it is a mixed bag, mainly good, but still mixed. Aiden's GGt came down a little more. It is now 121. I am very happy about that. (although normal would be GREAT hee hee) The other two liver enzymes have increased slightly. I mean one went from 37 to 48 and the other went from 48 to 52. So nothing tragic. BUT there is a little trend starting here. This is two lab draws in a row that the liver enzymes are creeping up. I am not sure this would concern the team, at all, I am just not thrilled about it. So please pray that this is over soon. I want to see that boy swim... and a BATH! OK YIKES a three year old BOY with no bath in a month. Oh yuck!
I feel like a whiner. I mean he is home (all I asked for a few weeks ago) and his numbers are better than they were. I guess that is the struggle I have with just wanting more and more. I shoudl be so thrilled we haven't had real damage to the liver. That I have a happy wonderful boy, and it's FRIDAY!I get to see my hubby all day tomarrow and Sunday. YAY! OK so I am better.
Thank you so much for all the prayers. I am so happy that if nothing else we are on the road to recovery. Lots of hugs
PS/ check out Aiden's new pictures!! SO cute!
Thursday, May 12, 2005 9:53 AM CDT
****** Updated the pictures! Look at some recent pics of me while at the Ronald McDonald House!! click on "View Photos" at the bottom!*****
Update:
Well, numbers didnt' do exactly like I hoped, but they still are going in the right direction.(except one) The one enzyme that was normal, is still normal, but did go up 8 points. The other two did come down but just not by a ton. So we will see. I am sure it is just reminding me how stubborn this rejection is/was, before it plummets to normal. Just keep praying we continue to improve.
Aiden is doing great other wise. He had his best friend Hannah come over yesterday, and it was a wonderful delight. They played on his "club house" for a few hours, ate watermellon, and a popsicle. By the end of the play date, Aiden was FILTHY! He had red sticky popsicle all over his face, hands, and knees. (of course Hannah was clean as anything, not even a drop on her pretty purple dress!) Then Dirt stuck to it. I look at him and just walked him to the front yard. Got the hose, and a wash cloth, and began to clean him. (he still has an IV in his arm so no baths yet!) he loved it! He played in the water, and my eyes just brimmed with tears. I can't tell you how it makes my heart swell, to see him dirty, silly, and just as normal as ever.
Anyway, he is also acting better, they lowered his prograf to 5mgs 2x a day, cause his levels were just too high. Ithelps with personality when it is lower. (phew!)
Keep them prayers coming! God bless!! I will update tomarrow with new labs results!!
Love, Lisa
Tuesday, May 10, 2005 1:49 PM CDT
WOW... I am just so thrilled to report our awesome labs. ONE of Aiden's liver enzymes is NORMAL! Aiden is loving being at home and his liver loves it too! The GGt is only 185 (still needs to come down to under 20) But it is looking very good.
I am so thankful for all the prayers that were lifted for Aiden. God heard them! I wish I could meet every single person that has prayed and wished us well, and just thank you from the bottom of my heart. We have been so blessed recieving meals, and calls, and just notes in the mail that say people care. Thank you for all of that.
Aiden is still getting nursing at the house Monday, Wednesday, and Fridays. She draws the labs those three days. I am hoping all his liver numbers are normal soon, and we can pull this PICC line (IV) out of his arm, and he can go swimming, and play with his friends soon.
His prograf levels are very high (mid 20's ) and you can tell! He isn't sleeping and he is grouchy and confused. PLease just pray that the minute this is all over we can get those levels down. Poor guy is even having hand tremmors. He is also anemic with all the blood draws, so please pray that he won't need a blood transfusion before this is all over with. Joey may go down and do a direct donation of blood this week in case he needs one in the next few weeks.
Anyway, thank you so much for everything! We love you all very much.
PS/ The picture above is kind of silly, but it is him at Easter. (only a few weeks before this mess started) I know I really can't get away with dressing him in little white linnen smocks anymore, But I love it!! Thank GOODNESS I am having a new baby soon so Aiden is off the hook. haha Also new pictures in the photo album! Go see :-)
Lisa, Joey, Aiden, and baby boy...coming soon
Thursday, May 5, 2005 8:01 AM CDT
Wonderful news in so many ways! But one prayer special request:
Well I know you are all wanting to know: I made it to my Ultrasound and I am having another: BOY! Another precious little boy. He was perfect! The doctor said no signs of anything wrong. (although biliary Atresia is not detectable on Ultrasound... it is also NOT Genetic and will NOT happen again) My heart is so full of joy. I can't wait for my little Aiden to have another little bald white haired little brother. I know he will look up to Aiden and even maybe protect him when he feels down. A little brother for my son seems like the perfect way it should be. I wanted a boy so bad, I imagine baseball games, and me with pots and pans yelling for my two miracles. I am feeling blessed beyond belief. Honestly I just know Aiden may have some more sad days ahead, some more pain and owies. And maybe a little "buddy" on his side, will be encourangement he needs.
Second wonderful news: I Guess all we needed was to come home. Aiden's Ggt went from the mid 700's to the mid 400's!!! They dropped 300 points. YAhooooo! THAT was what they were supposed to do! Silly Ggt. HAHA. The other two enzymes look a ok. ONe went up a tad, and one went down a tad. But TIME is all we need. The transplant team said with all the cell death he had, and with the moderate to severe rejection sometimes the liver needs to "re-graft" a little. This may even make the numbers kind of shift around. So we are ALL pleased!
Aiden actually gets one day off for labs too! Today he can just hang out with mommy. Tomarrow blood draw, but today just rest. Good cause we have a TON of laundry and cleaning to do. Ahhhhh The simple life. :-D
I want to tell you guys how thankful I am for the friends we have made. I don't know how I can ever say the right words to everyone who has just begged to help and put Aiden in the light. When we got home on tuesday night (at 2:00 in the MORNING!) There was a banner saying: "WELCOME HOME AIDEN", balloons, and gift bags full of homemade cards from his precious little play group friends, there was miracle mail stuff, there was things to help Joey and I. I was STUNNED! Of course Aiden wakes up and thinks, "ITS MY PARTY!" yes little Aiden, it was.
People are so precious, they are bringing by meals, and just calling with words of support. I am so humbled by all of this. A lot of you know it is hard for me to accept help and these kind of outpourings, but I am just so thankful you did it ANYWAY. I am feeling so lucky and blessed. I just want to thank you so much.
I do have a special prayer request, and I know you guys have a direct line to the "Big Guy" so here it is. I have some sweet online friends that have prayed for Aiden everyday for the last 3 years. (coth_yahoo) They are just so special to me. We are all experiencing tradgedy right now, and if you will just hold, All the "boys" in the light. God will know what we mean. Prayers for my dear sweet Sara as well. Sara is Aiden's human angel. She was the Abraham willing to sacrafice for Aiden when we were searching for a donor.
Thank you so much!! I will update tomarrow with Labs results. LET STAY HOME FOR GOOD!!!!
Love,
Lisa, Joey, Aiden, and baby boy coming this fall
Tuesday, May 3, 2005 2:31 PM CDT
GOING HOME!! ALL OF US!
OK so my son's wonderful transplant team is giving us a temporary pass to go home! If his numbers go perfect it won't be temporary, we will stay! We have set up lab draw first thing in the morning at ALL Children's and then home health will come daily to draw blood from him. If the numbers turn for the worse tomarrow.. we come back. By airplane. BUT I am feeling hopeful that it will continue to drop.
The other option is sitting here and doing labs and then being readmitted. SO with the fact we can hop on a one hour flight and then get admitted, we chose to go home. Even if it is one night in our own home, it will be worth it.
I was sitting here in the Ronald McDonald House holding back the tears, just thinking that we already missed half of April I just want to go home. Then I got this news. SO I am just so thankful to have numbers that may not be going down like we want, but are stable enough to allow us this trip back.
OK enough talking! I am getting packed!
Thank you for all the prayers I will continue to update daily, as we get labs in Florida. PLease pray that his numbers don't take a turn for the worse, and pray for tomarrow for me. I am getting my Level 2 Ultrasound to see if everything is ok with the little bun I am carrying. I will also get to see the sex. So prayers for a healthy sibling for Aiden!
God bless! Thank you again!!!
Lisa, Joey and Aiden
Monday, May 2, 2005 2:18 PM CDT
Sorry guys for the lag in updates. I was vegging from the whole thing. We are actually STILL out of the hospital. His labs on Sunday were weird. His ALT and AST went down 10 points, and his GGt went up 70 points. So the transplant team said, ok lets wait a day. So we got labs today... they actually fell (all of them) by a few points (like 10 more) Not exactly Earth shattering. We are still hoping for that one Ggt to cut in half. This has held us from the OKT3 yet another day! His ggt is 810 . So basically the same numbers as the other day. BUT like I said they don't want to rush into OKT3 unless they have to. They have him on a TON of prograf 6mgs twice a day, and high doses of cellcept and prednisone, and actigal.
The good news is that although his numbers are not cooperating, we are at the Ronald McDonald house. (couldn't afford the Mason house. After only 3 nights it was over a 100$) So we transferred to the RMDH this morning.
The plan: (this kills me cause it changes every day) is to draw labs tomarrow first thing in the morning. I totally respect the sit and wait approach. I will know that if they DO anything like the OKT3 I will know it was well thought out.
My OB appointment. Well I called and said, "My son is in the hospital in Ga. Is there anyway you can put my level two Ultrasound at noonish so I can fly in and out in one day?" They said yes!! SO I haven't made any flight arrangements for Wednesday because Lord knows he could GO HOME for all I know!?!???
Yes GO HOME.. that was the flavor I got this morning. They have mentioned, you can get a 30 minute turn around on labs in St. Pete with All Children's there, so what is the difference of sitting here and sitting there? They said they would send a flight if they would admit him. BUT they also said in the same breath, we may admit him tomarrow??!! SO BASICALLY I have NO idea what to expect. I am just praying the numbers start falling, the drugs do the trick, and we just get home soon. (Tomarrow marks TWO weeks of this joy ride.) Who knows though. At this point NOTHING would suprise me.
Anyway, thanks for all the prayers.. keep them coming!! We are feeling SOO blessed that if nothing else this little boy is happy and feeling ok. What a gift.
PS/ Aiden had hives all over his face today at lunch. I was very scared. I had that epipen ready. That was a scary moment. So just add a little prayer for the allergies too. That is what got us in this whole mess to begin with. Yuck.
We love you guys!
Lisa, Joey and Aiden
Saturday, April 30, 2005 1:21 PM CDT
Bad news.... Numbers are back up again. I think the writing is on the wall, (and the floor and ceiling). We are waiting to hear from transplant, we need to do something so we can save this liver from perminent damage. At this point, I think the OKT3 is what it is gonna take. It is a last resort medicine, and has nasty side effects. It is really scary, but another liver transplant is even scarrier.
We are at the Mason house, (transplant housing), and I spet last night pretty good. I did wake up at 4:00 and 6:00 (scheduled vital signs while we were in the hospital) my internal clock thought we were still in the hospital I guess.
I actually have been napping this afternoon, and plan on crawling right back into bed when I am done updating his site. Some peope call it temporary depression, I call it just bumming in my PJ's and sleeping all day. Needless to say I need it, and so does this little baby I am carrying.
Joey and I feel like we keep getting kicked in the gut. I know it can be 'so much worse', but I just want to go back to the 'so much better' side of life. I will update you with the real plan as soon as I hear. And also with mailing information when I know where on Earth we will be.
Lots of love,
Lisa
Friday, April 29, 2005 4:26 PM CDT
WE BROKE FREE! They discharged us to the Mason house for the night, possibly longer because he they aren't going to do anymore solumedrol, the next step would be the OKt3 and they are pumping him full of his prograf. So they said, we can go to transplant housing for the night, come back to the hospital tomarrow morning and our nurse said she will draw his labs on the floor even though his isn't techincally IN the hospital (didn't know they could do that) and then if his numbers are worse we go back in. If his numbers are better we just sit here and wait.
The news today wasn't the good news we hoped for, but the transplant team is being kind and letting us have a night of reprieve. I need it. I just spent the past 20 minutes SITTING ON A BED. There is CARPET in our room. I just took my shoes off and felt it. Ohhhhhh.... ANd to think we were in the hospital a total of 200 days in the year 2003!! I am spoiled, these 10 days being in while pregnant have been not so fun. But it could ALWAYS be worse, so I am just thankful we are out for the evening, praying it is longer than just a night.
Thank you guys so much for your prayers and kind words. I sometimes feel guilty, knowing it is kind of a bummer being friends with us. I hate that you guys have to ride the roller coaster too, but am so thankful to have loving family and friends along to help us.
Aiden is gonna grow up knowing that he was so loved, and so cared for. This little baby that I am carrying will have a wonderful example to live under. I will update as soon as I have some news to report. I am suspecting some time around 11:00am tomarrow. Grab those Bibles and pray that these stubborn numbers GO DOWN! I think the transplant team is giving us a day break, before they do the OKT3. I just know God can work miracles tonight. I can't wait to update you tomarrow with some wonderful news. If it ends up being bad numbers, then I know it is all part of that perfect plan. So Off to have a GOOD nights sleep. (it is actually bring me to tears just thinking about it)
Lots of love!
Lisa
Friday, April 29, 2005 9:22 AM CDT
And the numbers STALLED... They were SUPPOSED to cut in half. (aren't you getting tired of me saying that?) But nothing. They just are stuck again. The hepatologist came in and said since the PTC cholangiagram showed no obstruction, then there is less to worry about severe damage; we just have a stinker of a rejection. "JUST"... But hey yesterday was a good day we did have some change in numbers. I just get frusterated when things don't go the way I want or expect.
The surgical team just came in and said, they may even do ANOTHER dose of sulomedrol on him today!! They are also upping his prograf to 6 mg's twice a day!!!! His normal dose is 1 mg twice a day. YIKES!
Since we are just sitting here doing nothing but entertaining the staff, there is talk about sending us to a the Mason house. (transplant housing)He would come back to the hospital for lab draws, and be very close by to be readmitted if we had a problem, or the numbers went up again. Then DEFINTLY they would do the OKT3. At least we would be out of the hospital that would be better. But that is another "sit and wait" scenario. We'll see what the docs say.
Joey was so wise, yesterday he told me not to put all my eggs in one basket, and get so excited about one day of labs, that today we could have a bad day. He was prepared, I am just riding that rollercoaster. OH well. The ups are fun it is those little dips that aren't so great.
So forget this number talk, let me tell you guys a little about what Aiden's life is like here in the hospital. His nana and Babu came over and brought him a golf set, so as I type this, he is practicing his putt. Aiden is a full fledged steriod monster. He is hungry all the time, hyper, wild, and having the best time just dragging mommy and daddy to the play room, down the hall, to the fish tanks, to the garden. You name it. After being here he is like a little politician. He is waving to everyone at every station, they all know his name.
He wants to go home, but he said he also wanted to go to work with Mr. Todd and do the rounds with the liver team. (Mr. Todd is the surgical PA and Aiden loves him). I am so thankful that Aiden is not too traumatized and he seems to even be doing better with the breathing treatments. Less struggle. The dinasour mask helps!
So needless to say, we aren't thrilled to be here but feel so blessed he is perky, happy, and resiliant. As a mommy I would much rather have bad numbers and a happy child than a sick sick child and good numbers. So always giving the Glory To God.
Keep praying these numbers budge and we can get out of here soon. Thank you so much!!
Love, Lisa, Joey and Aiden
Thursday, April 28, 2005 8:50 AM CDT
I love to report GOOD NEWS! His numbers finally started to respond and came DOWN some!!!! Yahooooo
What does this mean? Well, it means we still have to wait to see what the biopsy shows, we still have to see if tomarrow with no solumedrol the numbers continue to drop, and then if he is indeed trending in the right direction, then we are in good shape. :-D There is still a big possibility that they creep back up, and in that case, we will probably have to do that OKT3. But I am thinking down down down!!!!
So I am just happy for good news, and JUST in the nick of TIME! They said they can't do any more steriod boluses. SO if tomarrow we have a trend downwards, then I can breath MUCH easier. So keep them prayers coming I can't wait to see what wonderful things will happen tomarrow. Thank you SO much for all the prayers and sweet notes. Aiden just LOVES to hear me read the guestbook.
Today he said he wanted to go home and play at the park with his friends and his dog Rolex (aka Rolly). I just can't wait to get to play group and just be "normal" again.
God is so good! I love just knowing that after a wonderful Wednesday night prayer at our church, and probably a bunch of others, Aiden's numbers went down. We don't believe in coincidences here, I am just thankful that God's timing is the perfect timing.
Keep them prayers going! THANK YOU!!!!
Love, Lisa
Wednesday, April 27, 2005 3:50 PM CDT
OK he is done! and what a relief we have some good news. Best case scenario happened and we found no new bad problems. There was no obstructions or destroyed bile ducts. Praise God. Phew. I was getting scared. That is not the road you want to go down. You only get one major extrahepatic bile duct per liver. Of that one is a gonner, then so is the liver. so I am happy to say we are hanging in there.
What does this mean for Aiden? Well then we are JUST (haha) in a severe rejection. They gave him his last bolus of solumedrol. They won't go any more after this. There is a time where you just have to say it isn't workign and we need to move on to the OKT3. I surely haven't given up hope that this is all over tomarrow... and the liver just kicks in. I have seen so many little miracles with Aiden, I never say never.
I am just SO thrilled to have some happy news. When I saw the labs this morning, I was so sad. Yesterday was a totaly Satan attack. Car accidents, me SO sick, Aiden so miserable, and then Joey sat on his airplane for over 3 hours delayed. Stuck. Finally arriving after 11:00pm.
Now, I got a big goofy grin just praising God for a NASTY rejection and 8 days doing this hospital thing. It could be worse. It is amazing what bad things you will accept and embrace when the horrible is placed in front of your face. And when the horrible is your reality, God just gives you that extra peice of strength to embrace that for the unimaginable. We have been there and done that, and I can tell you it is no fun. Last week I was dreading this awful OKT3 and this week I am jsut wondering when they will start it.
Who knows. I just am gonna go squeeze that precious little baby of mine. Thank God for his liver donor from 2 1/2 years ago, for the gift that has fought to stay with him and save him. And Just wait to see what tomarrow brings.
Lots of hugs,
Lisa, Joey and AIden ("bunny" too)
Wed, April 27, 2005 10:00 AM CDT
***Wednesday little update***... Numbers went UP again by a lot. He is heading into Intervental radiology at 2:00. He hasn 't eaten since 8:00 last night. This is gonna be a long day. PLease pray for him and his hunger. Also when he is hooked up to the IV he is a different kid. He hates it. So our sweet doc just let him come off the fluids for a little bit of play. I am so glad. The unhooked him, and he said, "OH I feel better!" and off back to play Thomas.
I am not thriled about the numbers getting worse. We are probably heading down the OKT3 road for sure. I am suspecting to find out when that will happen soon.
This is not a mild rejection, this just is stinky. I am really getting tired and discouraged, so I am gonna go read my Bible. I need a little fuel from God. James 5:15!!
Love you guys, and please pray pray pray.
Lisa
ps/ I corrected the hospital address below, I have recieved a few emails to send get well cards to Aiden or care packages. Just adress it to Aiden Hawk room 463 and the adress. Thanks so much I know it will cheer him up.
*****************************
(last night's update, in case you missed it:)........
OK, the ggt is now 740 yuck. It went up 100 points over night, not good. They raised his porgraf again and this mornings level was 20.5. They want that. They are doing yet another (his 4th) bolus of soumedrol. These aren't little boluses either, huge numbers for a child this little. I can't beleive how much they have given him and nothing, it isn't better only worse. I guess this is why they keep saying it is a "steriod resisitant" rejection. Not two words you want to hear when the word rejection follows.
So they are fasting him tonight at 2:00AM in case the numbers raise again, and they are going to do a PTC cholangiogram and liver biopsy at intervental radiology. Ok, so what does that mean in English? It means they are taking him to CT scan, sticking a fancy needle into his liver, take a piece out, and then do a even more tricky manuever and stick a fancier needle into his tiny bily ducts to see if he has any new issues. This is a first for us. SO PLEASE pray. It is not nearly as minor as they liver biopsy done in the OR.
I already mentioned the fentanyl and the lowered Heart rate and they said they would figure it out with anesthesia people. I am pretty frusterated this hasn't gone the way I have thought it would. Not a typical rejection, but I am confident they will figure it out.
The OKT3 threats have still been lingering, but they OBVIOUSLY don't act rash about that, since we have been doing this for a week and he came in with a Ggt of 161 and now we are at 740 after 900mgs of steriods. I figure if they give it, they have to. I won't object.. how could I? They are the docs. I am JUST the mom. (and the people who really know me, can see me rolling my eyes) haha
I am still confident (although I feel like a little mouse when I say that vs the lion before) that this is all just gonna be better tomarrow. Pray for lowered numbers tomarrow that is EXACTLY what we need. Hold off any more invasive stuff. I have FAITH that no matter what happens this was all for God's glory and that only good will come from this eventually. The road may be a little poopy, but I know there is light at the end of the tunnel.
With prograf being such a great drug the rejection rates that result in scarring and loss of organ have plummetted to near nothing. But the docs said, the way Aiden is reacting (because he was off of it) is how it used to be. Agressive, fast, and tough. Fortunatly they have him on prograf now and it is high.
So anyway, off to be sick some more. I am so sick. I have a migrane, and I just want my husband back. he will be back tonight late. I am getting a room at the Ronald McDonald house to rest so I can be there for Aiden.
More bad news we need prayers please: My inlaws were coming up here so I could go to the RMH and sleep and they got into a car wreck in down town Atanta on I-75!!!! They are ok, but my MIL is bleeding from her face, and the car was my FIL's work vehicle and it a big mess! Oh man. I felt so guilty they were coming to help me. Geesh just say a prayer for them as well.
Thanks for the prayers.. PLEASE keep them coming for lower numbers. ((HUGS))
Sunday, April 24, 2005 9:57 AM CDT
Hello all!
I Just added some new pictures! Here is Haley and Aiden in bed resting. Almost all of you know Haley but if you do not, PLEASE go to the link at the bottom of my page to read about this amazing child. She is a true miracle doing God's work every day. IN this picture she is doing the job of making little Aiden happy, and she does that very well.
Well the labs have stalled. :-( They haven't increased which is good, but them not going down any more is not ideal either. The way it is SUPPOSED to work, is that he RESPONDS to the treatment and his numbers should cut in half every day. This absolutly has not happened, and it is getting to the point where they either give more drugs or even re-biopsy to see what is happening.
There is a more serious issue in the PICU right now, and the surgical team is very busy handeling this. There was a time where Aiden was the one that took up all their time cause he was so critical, and now I am just thankful that he is on the back burner for the next few hours. You DON'T want to be the one that takes up all their time, it isn't a good thing.
We have seen his hepatologist, as well as both surgical PA's but just waiting to get orders for whether we sit and watch labs one more night, or continue on with more solumedrol.
Aiden is pretty much 80 imself. He is feeling perkier and happy. I just LOVE to look at him while he plays his Thomas and talks with his toys. He is such a happy child. What a spirit! Now if we could just get that stubborn liver to cooperate.
The general feeling is that he needs more time (oh fun) and that they need to get a grip on this. If numbers increase AT ALL we are in for biopsy to see if we have yet a new issue brewing.
Joey is flying home in a few hours, so that leaves me and the little guy. Pray for my nausia. I am taking phenagrin, but I can't take it at night cause I need to be alert if something happens with Aiden. Please pray for Aiden's Daddy I know it is very hard for him to have to leave. He is our hero in this family. The glue. I am so blessed to have him. I know Aiden will miss him, but he will be back very soon.
SO pray these numbers kick in, I feel very confident it will.. EVENTUALLY and then this nightmare can be over. It is a little disturbing that it is not responding the way it should, and the looming OKT3 keeps being whispered everywhere. EEK!
Thanks for all the prayers I know they are working, if nothing else he is a happy boy.
Lots of love!!
Lisa, Joey, Aiden
and the 18 week "bun" in the oven :-)
Saturday, April 23, 2005 10:40 AM CDT
*****Quick Update***** Aiden's chest X ray is normal today. That is good news! we will take evey piece of Good we can take! His heart rate is still low even hanging out in the mid 50's.SO they are watching it. But I feel really good with some good news. Give me some energy. Pray for tomarrow!! ********
(Previous Update)
Not the best news:
Well so far Aiden is not responding to the steriods like we hoped. After three days in a row of the solumedrol, and an IV infusion of Zenapax, and super high doses of prograf oral, (not to mentiopn cellcept and prednisone) his rejection numbers have worsened. The main emotion I feel is shock. I just "assumed" that he would get one dose it would work and he would be out of the hospital in a few days like every other rejection. I do have faith that will still happen, but this is a trickier road. If he does not respond soon they may have to use a very agressive treatment called OKT3. This would be last resort kind of a thing.
Second issue: Aiden had this little cold a few weeks back. In the past few days with all the immune supression it has worsened into a nasty cough and now some "noise" in his lungs. The ordered a nebulizer and albuteral to help him out. Just pray we don't get a pnuemonia, that would be really bad since his immune system is so compromised right now.
Third issue: He feels bad. Please pray for strength for him. I just watched him moan in bed for 3 hours. It is hard to watch. Then he sat up spit his binki out, and played for 5 minutes. He crawled back in bed and is there again. He is TRYING so hard to feel better and play when he does. That is how these little guys work. You ask any mom at his liver support group (CLASS) and one thing they all have in common is a ZEAL for life. They just don't like to be down.
The plan: I think as of now we wait and see. I think they may give him one day to see if the numbers catch up to the drugs, if not maybe more steriods maybe that OKT3 I dunno. I think we might be here for a while (thorugh the week) so those of you who asked to send letters/ cards, feel free. The adress is below and his room number is 463. Just send to Patient Aiden Hawk. His Nana's kindergarten class made him get well cards and I taped them to the wall so he could see it. He liked it a lot.
Thanks for the prayers and emails. I love you guys and just want you to know that I KNOW this is gonna get better. God has his hand all over my little boy and I just know he will heal him.
Lots of love,
Lisa
Ps/ the bun in the oven is fine, I know a lot of you have emailed me about this. I am getting good rest, and I am keeping my stress down. Heading to the chapel now to do that.
Friday, April 22, 2005 7:53 PM CDT
Finally and update!
So after two days of complaining about not having a computer and wishing I had one, my husband states: "ummm.. well you know I brought my lap top, right?" NO! I wouldn't be moaning and groaning for a computer for 2 days but I digress... we are under some stress. (Poor guy)
I am in shock right now. Nothing has gone like I expected. Normally Aiden is his charming little self in the hospital and nothing phases him. NOT this trip. Poor guy has had a horrible time. The first day was a nightmare. He was so sick he was limp. He wouldn't walk, never talked.He was just a limp little rag. I have never seen that in him. Oh it was no fun. It tok 6 hours to get a PICC line (IV that sits near his heart) started. It was awful. It went into hsi jugular (spelling??) and then they had to pull it back out, but anyway, finally it is ok.
The second day was awful too. He was vommitting for two days now hadn't eaten for almot 3 and then he was NPO fasted for his liver biospy. He had more spunk, that is an understatment, he was like a tasmanian devel screaming kicking and crying the whole day. Joey is actually sore from holding him down.
Today, my little angel slept for 14 hours and then was a doll. But the biopsy results were the bad news today. well the update was not what I expected. The biopsy showed much worse results than I thought, but not what the team thought. They came back as moderate to severe rejection. They found massive amounts of lymphocytes in his bile ducts and also cells all over his blood vessels in his liver. They said they next and last step is the immune system attacking the hepatic artery and other major veins and the liver is lost. (of course that is my dumb mother version of the long detailed explaination) EEks! I just said, but it was only 5 days! I just am horrified at the thought that the labs that made them "nervous" were a GGt of 10, ast 27 and ALt of 42. I was just so sure they were being a little nuerotic for making me get labs ASAP on his birthday. But Thank GOD that they did. I know they are smart and all, but as a Christian I am really knowning that was a "God thing". If it would have been later (like the two weeks we were scheduled... I shudder to think) BUT of course with the way he was acting it was OBVIOUS something was wrong.
So the plan: well they have done 2 boluses of the soulmedrol (very high level steriods to wipe out his immune system) two days in a row. And yes tonight another big bolus. Normally the way they do it is one of two ways. A tapering dose, or bolus...wait a day... bolus ...wait a day until they get the trend they want. It is unusual to do two boluses in a row, but 3 boluses more uncommon. They said they will not do anymore after this they are going straight to the OKT3 or whatever it is called. I don't know what that is, I just know it is very serious. HOPEFULLY todays bolus will get the trend in the right direction and stop this. I am still in shock on how severe the rejection is considering that it was only 5 days. But anyway. This is his 6th official rejection (all the others were when he was JUST transplanted and had a terrible virus that attacked his liver) and we have had a moderate once but usually they used to be mild/moderate. He is just an agressive rejector they say, so you guessed it. BACK on the prograf (His primary immune supression drug they took him off of). Which is FINE with me! INfact they are blasting him in that department too trippled the dose said they want it sky high then they will "lower it" to 20. They said we want to save this liver. Holy cow! So please pray no seizures for Aiden, he has had seizures in the past due to toxic levels of prograf.
SO that is the scoop. He has a seriously strong immune system. That is why he is anaphylactic to everything, that is why it happened so fast. But the good news is once he gets better and over this bump he fights cold faster than me! Gotta look on the bright side. God gives is what we can handle right?
Good news: We had the BEST time today even though we are here. Aiden had his birthday party, and our liver friends Cheryl and Haley came, Karen came, and Mina sent a wonderful little gift. Aiden was just having a blast. We made dairy free cupcakes and handed them out on the floor (not telling anyone they were dairy free) and everyone LOVED them, then I told them they were milk free, they were shocked. hee hee. So Aiden is in TERRIFFIC spirits and that is what I really prayed and hoped for. I can handle ANYTHNG when I see that smile!
I love you guys and thanks for praying and giving our family so much support. I have faith they will get those numbers down today. Last GGt (rejection number) was 500 Up from 169 and then up from 10 so hopefully a downward trend. And I imagine with all these drugs it will work.
Keep us in your thoughts and I will update as soon as I can!
HUGS!
Lisa
Tuesday, April 19, 2005 11:41 AM CDT
Update: OK labs are back they are terrible. He is in rejection. Boy that transplant team is smart. Anyway, pray for the admission, biopsy, IV lines, etc.. I am bringing all of his streamers and Thomas the Train party hats and table cloths with me. I am gonna decorate a party for him ANY WAY.
Lots of hugs,
Lisa
(previously posted)
HE IS 3 YEARS OLD TODAY!!!!!
And, we are off to Atlanta. Yuck. Had to get a boo boo on his Birthday. His numbers are Slightly elevated. Now we are heading to Atlanta because No one here can do this IV drug he needs. If his numbers are worse and he IS rejecting, we will probably be admitted and biopsied etc... I am hoping though we can avoid that little drama and just get the IV drug; say our Hello's to the team; and get OUTA of there. LOL
He has his first real Birthday party this weekend and honestly as his Mommy, I would be SO sad if it was missed due to an admission. Of course we could reschedule and will if we have to, but I don't want to. So pray that labs look fine. (I have plenty of faith they will!) and we just spend 16 hours in a car with a tired 3 year old, JUST to get a 30 minute infusion. haha what a prayer request.
Lots of love to my prayer warrior friends who have helped us get this precious child this far. It is a miracle he is so healthy and happy, I won't ever take that for granted.
LOVE,
The proudest mommy in the world.
Lisa
Friday, April 15, 2005 3:20 PM CDT
well just got an email that said Aiden can move to once every two week labs. Pretty exciting and scary! :D His labs are so rick solid I have faith it will be jut fine. But I don't think I am gonna allow much longer than a two week interval for a while. Not till we have a little longer off the drugs. We'll see.
Aiden has done great. I am thrilled that he has. I have a fantasy of him coming down on the other drugs now. High steriods and high cellcept just can't be good for a little body. But that may take some convincing of the team. Another, "we'll see".
I am sad becuase Aiden is going to miss the "take me out to the ball game" event in Atlanta. We just can't risk the peanut exposure. The Atlanta Braves have the transplant children walk the field, and have a picnic with an actual player. We went two years ago, and it was a wonderful experience. But not worth an anaphylaxis to peanuts. It is crazy how food allergies have changed our lives in the most subtle but frusterating ways.
Great news is that Jonathon S. is running in the Boston Marathon "for" Aiden! He has raised money for finding cures for liver diseases on the behalf of the American Liver Foundation. We have never met Jonathon but he sounds like an amazing young man. Say a prayer for him to have success and a wonderful time. I know he will be rewarded for his love of children he doesn't even know. Thank you Jonathon and GOOD LUCK!!
We are all doing good here, I am still suffering with morning/afternoon/night sickness. Aiden is telling everyone, "Mommy is puking!".. Ohhh how embarressing. But I feel blessed to be carrying a new precious child inside of me. What a miracle it will be. I am thinking for sure it is a boy. And to me that would be WONDERFUL. I love being a boy mommy. I can't wait to go to baseball and soccer. But a little girl would be so neat too. How can a person really "care" what the sex of a baby is when it is such a GIFT???
I hear people always say, (including myself), "As long as this one is healthy..." But as I sit and think. Even if this one is not healthy I am blessed. I can handle anything God has in store for us. I would like to REQUEST to God that this one is healthy, but hahaha God has his own plan. No matter what I can't wait to be a mommy X 2.
So thank you for your prayers for Aiden, they are working! Keep them coming and don't forget to sign his guestbook. I still print it and save it for him. He knows he is loved from all over the place. Thank you for that!
Till next time!
Love, Lisa
Thursday, April 7, 2005 7:28 AM CDT
Labs came back perfect again. But Aiden isn't feeling well. It started last Saturday with a cough. But now it is pretty bad. He has a sinus infection, terrible cough, can't sleep (AT ALL!), and he is hoarse. His little voice is so scratchy.
I hate to see him feeling so sick. But at least we are home and staying out of the hospital as of now. Please keep him in your prayers. He just got perscribed a new antibiotic I am hoping it will help.
Got to hear the "bun in the oven's" heartbeat yesterday at my OB appiontment. It was really fun. Find out the sex of the baby in just a few weeks! YAY!!! Hoping for a healthy baby who will grow to love God. Boy or Girl, I would be blessed with anything. ((HUGS))
Wednesday, March 30, 2005 5:33 PM CST
OFF PROGRAF ONE MONTH!!!!
Just wanted to let everyone know Aiden is doing PERFECT so far off his primary immune suppression drug! His labs are perfect and he is looking GREAT again today!! The next few weeks are really going to be a huge test to how he will do. I am really looking forward to seeing how this plays out. I know that his team in Atlanta is optimistic. I am just happy that we have managed to not reject yet!!
Aiden is almost 3 years old. Just a few more weeks! It is always so special to me when he has a birthday. I can still hear his doctors tell us that he may never see his 1 year birthday. Now it will be 3. We feel blessed.
Aiden has been getting blood drawn once a week for the past month and it will continue that way. The veins are hard to find and it is something he really hates. I am hoping he stays healthy and doesn't reject so we can just spread the blood draws out further and further.
I just wantewd to update and let you know what is going on. Thank you for all the prayers!! Keep em coming!!!
Thursday, March 24, 2005 8:12 AM CST
Well!! Things look AWESOME So far! His labs are rock solid perfect. We have been to Atlanta two times for IV infusions. Pretty simple. Get to see Haley last time again for only a minute, but it was fun. Her newest hit was just released: "Aiden's song" Gotta say.. I LOVE it!!
I know I hadn't made it totally public, but I wanted to now. Aiden is going to be a big brother this September. We have a lot of wonderful things happening this year. I watch a miracle unfold in Aiden as we take him off his drugs. I pray for no rejection and pray for no more immune issues.
I have a sad heart for a friend this week. Her little precious baby was born just too soon. Little Malcom. I ask you to keep them in your prayers as Malcom fights to stay here on Earth. He is already an angel and a miracle, but his Mommy and Daddy want so desperatly him to make it so they can hold him. SO thank you for praying, they are very special to me. here is is website:
www.caringbridge.org/ga/malcom
Thank you for checking in on Aiden. He is doing great. His 3 year birthday is coming up. Another day to celebrate that gift his donor angel gave him. Once again pray for no rejection. Much love and hugs to all of our precious friends.
Love, Lisa, Joey and Aiden
Thursday, March 3, 2005 6:13 PM CST
Hello everyone,
Aiden's trip to Atlanta left us with an unexpected twist. We went to Atlanta for the severe life threatening complication he has been experiencing from his Prograf. Prograf is his main immune-supressing (antirejection) medication. This is what keeps Aiden healthy, his liver healthy and basically alive. Aiden is our odd little ball though. Instead of this drug helping him, Aiden has developed (Over the past year) an immune disorder. The drug has sort of turned on a switch in his immune system that NEEDS to be turned off or the outcome will be devastating. Aiden has developed an anaphylactic reaction to multiple foods, oils, and scents. His T- cells (a type of lymphocyte?) is very very high and on overdrive. He has on average been having an anaphylaxis a month. I have watched him nearly slip away too many times.
We flew to Atlanta on Monday in hopes of a new treatment, an answer something. We met with a new immunologist on Tuesday and then followed that with our transplant team on Wednesday. They came into he room and told me the shocking news. Aiden's Prograf was going to be stopped. They are going to be doing some very experimental immune-supressing treatments on Aiden. Yesterday Aiden received his first IV dose of Zenapax, he will also be starting high doses of cellcept as well. Aiden will remain on his level of steroids and add 3 more medications on top of these. The Zenapax will be IV infused every two weeks and he will be getting weekly lab draws. The removal of the Prograf obviously increases his risk for rejection. I just ask if everyone will pray that Aiden does not reject and that he will stay healthy through this new transition.
The transplant team explained to us over and over again that this is just a theory. Aiden is a case report, meaning there are no others that he really is like. They don't have some book to tell them what meds to follow or how to save him from this life threatening anaphylaxis or how to make sure he doesn't reject. I do though, know that God's hand is all over this. I have a sense of peace over me. I won't say it isn't weird or even a little horrifying to NOT give his Prograf. It is like my hands are yelling at me to DRAW UP his MEDS! It just has been a way of life for so long.
Aiden may be getting a new Broviac replaced to help with the IV's, blood draws, and maybe rejection (knock on wood!). Yesterday it took over 1 hour to find a vein and 4 pokes to his little body. He is still so scarred up from the years of blood draws and IV's. I will say, I am so thankful that 2 1/2 years ago, God sent Joey, myself, and our little bundle of joy up to Atlanta to meet our transplant team. I am constantly reassured that we are in the center of God's will and that we are where he wants us.
We are on a new road and I pray that we are heading to the fully healthy Aiden that we have striven for. Please pray for wisdom for the doctors and for peace for Joey and I. We love you all. Your years of love and support have gotten us through so much, thank you!
We did have a wonderful aspect to the trip to Atlanta we stayed with our dear friends.. Haley's family! (go see.. www.caringbridge.org/ga/haley ) It was a blast! Aiden and haley seranaded us with 100 verses of Happy Birthday and Haley sangthe most amazing sassy version of Aritha's R-E-S-P-E-C-T...... That Haley can sing!! It was so nice to have them and our friend Karen there to help us through all the travel, visits, etc... I have to say I laughed myself to sleep. It was a real blessing. Many hugs to all of you!
The Hawk Family
www.hometown.aol.com/rolexh/Aidenshope.html
Tuesday, February 15, 2005 8:31 AM CST
Hi all it has been a while since I have update. Aiden is doing great. His liver numbers have been perfect but his allergy and immunology stuff is out of control. He is hyper sensitive and has had 2 MORE life threatening anaphalxis since I last updated. His transplant team is approriatly concerned and he finally got a refferal to an immunologist in Atlanta. We will see Dr. Phillips on April 1sr. He better hold on to his hat, Aiden is one interesting kid. They are discussing psossible steriod pulsing on Aiden, and other ways to help supress his immune system. SOMETHING needs to be done. School is NOT an option at this point.
Aiden is also having some nuerological things happen. I guess it is from being "acidotic??" My good friend is a neuro-rehab nurse and God placed her in our pressence during a frightening reaction. (To a GLADE SCENTED OIL!!) She noticed some nueorlogical issues that he had.He is unable to speak. If we asked him to say Elmo he says" WAAAAAAAA" and at other times he is sort of just not able to make words. It is scary and weird. Aiden has a history of seizures so I think it wouldn't hurt to go back and speak to his neurologist about some of this. All I know is his transplant team is on the ball and finally seeming to make notice about Aiden's issues.
I am goingto post some of my favorite pics of Aiden's wish I hope you all enjoy. I still can't get that awesome day out of my head. THANK YOU.... Make a WISH!!! I will update soon. We see allergy today, and then transplant clinic next month. God bless! Love, from the Hawk family
Sunday, December 26, 2004 11:21 AM CST
Where do I begin? Yesterday was one of the most amazing days of our lives. I have witnessed so many giving and amazing people. Aiden got his wish and THEN some! Monday A.
M the Woodplay people came to put up the swing set. The two guys were super nice. Aiden and I made them a batch of cookies and I video taped the swing set getting put together. Let's just put it this way. The slide was NOT even attached yet and Aiden was on the ground sitting on it, sliding his butt acros it with all his mite screaming "WHEEEEEeeeeeee". It was precious. Once the "Club House" as Aiden calls it, was put together I think he was in hog Heaven. He never expected yesterday to be the REAL Wish day.
We Met Yari, his wish coordinator, and she was so sweet. We knew that they were trying to get some form of media there, but I never expected 4 news stations! All four stations, NBC, ABC, FOX, and Bay News 9 all showed up! Aiden was overwhelmed! Then here comes the guests of honor, the fire fighters! All these amazing men and women come with hands full of gifts for Aiden. A fire jacket, helmet, tool belt, with hose, and gloves, and walkie talkie. It was amazing. Aiden was so excited. Then it happened! "HONK HONK" the big red fire truck with a green wreath attached to the front and about 5 big smiling men jumped out. The grabbed their shovels and began to shovel and lay the mulch under Aiden's new Swing Set/Club House. Immediately Aiden pitched in! He grabbed his own little purple shovel and helped the "big boys" with their job. Aiden was smiling from ear to ear. And I have to admit so was everyone who was there.
Next the approached me and asked if I would get Aiden's car seat to put in the truck. Yes, the big red fire truck! The asked Aiden if he would like a ride in the truck and he shrugged his shoulders all cool, and said, "Sure." They gave him a shiny gold lieutenant badge, which they showed on the NBC news. And Aiden was official, the next fire fighter of St. Pete. He called him self a "Tutenant." It was VERY cute!!
The ride was surreal. A camera crew even rode in the truck with us. Once at the Station they showered him with yet ANOTHER gift and more surprises. His very own cool fire truck toy! It has lights, and a working ladder and even a siren! Aiden is obsessed with it!! They pulled out the HUGE 1 million dollar BIG ladder truck parked it in the side street and let the big ladder ALL the way up! 100 feet in the air!! They also gave Aiden and Daddy a ride on it! It was amazing.
They finished off the day with a real lunch with the fire fighters/our heros. Grilled Cheese and Ham sandwiches, Spicy Chili, and tater tots! These guys eat like college students! HAHA. (Aiden of course ate only the tater tots, or "hots" as he calls them because of the allergies.. we brought his lunch too).
Joey and I came home Aiden fell right asleep, and we just smiled at one another. Yesterday was a day full of joy and giving. Aiden will have memories for a life time. But it was also another special day. It was the day that marked his two year anniversary with his GIFT OF LIFE. Aiden's donor family is grieving their loss this Christmas, and we are celebrating a life. I think about them all the time, and last night Aiden said a special prayer to them.
I want Make a Wish, Wood Play, St. Pete Fire Dept., the mulch company, and all else involved to know how grateful we are. Aiden has fought many battles and won. It hasn't' been easy along the way. There are many tears I wipe, and many times I say I am so sorry you have to have this medicine. BUT he is HERE! All these volunteers have shown him that THEY CARE that he has suffered some times. All the people who gave to him yesterday told him silently, "YOU MATTER." And that, is the gift that he can take with him every where for the rest of his life. And may it be a long long life.
Thank you for all your prayers And here is to many more years with this amazing child. Thank you!
Saturday, December 18, 2004 1:49 PM CST
Well I can't even stand it I am so excited! Aiden's wish is coming Monday morning. Woodplay Usa is installing one of their amazing wood play grounds in my back yard! Then Monday they are having the fire department come over and shovel the mulch (with the help of one very strong 2 year old). THEN they are taking him, my husband, and his Grand parents to the fire house for lunch. He will get to tryon the hats and see all the cool things at the fire house! Aiden won't even know what is in store for him!!!! Of course I will be glued to the video camera and regular camera. I can't wait!
Aiden has had such an awful yet weird month. He has been exposed to chicken pox two times! Last time we had to go to the hospital and get the VZIG (immunoglobulin treatment) so far so good he has not contracted chicken pox. Aiden also has gone anaphalzctic to a yellow lollipop! It was awful Another night in the ER. I had to do the epipen on him I was very scared. Aiden is also developing asthma. He has a nebulizer and we have sone breathing treatments at home.
Today was also a sad day for the whole family. Aiden's (my) kitty cat Sharkie went to Kitty Heaven today. She was 6 years old and was hit by a car. Aiden saw me crying and said, "Mommy is very sad". He doesn't understand what happened.
Monday's wish from the Make a Wish foundation is so welcomed in this house. Tuesday is when the fire dept comes and they will have the media there. It is also Aiden's two year transplant anniversary. Somewhere some family is grieving a loss of an infant. I want you to please pray for that amazing family that gave me my son back two years ago next week.
God bless you all and PLEASE pray for the following friends:
Haley
Romina
Baby Tanner
Baby Grace
Savannah
and all the others I have not mentioned. Please checkout Aiden's other website for new pics too!
www.hometown.aol.com/rolexh/Aidenshope.html
Much love and joy,
Lisa, Joey and Aiden
Wednesday, November 3, 2004 2:32 PM CST
Well we went to Atlanta and unfotunatly the scope showed that he has some changes in his GI system. The doctors all felt very comforatble increasing his steriods. He is just hyper and hungry. A little more moody too, but we will deal with the other side effects when and IF they occur. As the old saying goes "don't borrow trouble".
Aiden was home for his first ever Halloween. His first one the little ear of corn was sick in Atlanta waiting on the list with cholangitis. Last year started off ok, but Charlie Brown was called from the hospital because his cultures came back positive for a blood infection (from his Broviac) THIS YEAR, Bob the Builder was healthy happy and having a great time!
We also have recieved our official letters from Make-A-Wish foundation! They have called us several times to let us know that he will have a wish granted very soon. This is a bitter sweet gift. Thankful for the volunteers making something wonderful happen, but sad that my child even qualifies.
Life is wonderful though. We are so blessed to have this amazing child here with us. Thank you for your prayers and love. Please check out his other website for more pics and updates:
www.hometown.aol.com/rolexh/Aidenshope.html
Much love to you all!!
PS/ Please keep these families and children in your thoughts:
***Angel Ava.. Passed away last month waiting for her liver. (she was only 8 months old)
***Natalie who is now being listed for a new liver
***Baby Lia who suffered a brain bleed as a side effect of Biliary Atresia
***MISS HALEY.. She is getting her Make a WISH this December and thrilled about going to Disney's: Give kIds' the World!!
And all others that are unmentioned but in our hearts......
Friday, July 16, 2004 6:41 AM CDT
I am at home playing with My Mommy today! Next week I am going to vacation Bible school. I have never been around that many children before and I can tell my Mommy is a little nervous. I keep telling her it is no Biggie, that God has a plan for me and no colds or bugs are going to get me down!
It has been a long time since I slept in a hospital. Since January! I got tubes in my ears, in May but that was a breeze! I did find out though, that I have ot get my tonsils, adnoids, and this piece of IV that was left in my chest out. Yes, you read right, a misunderstanding. I guess some types of Broviacs you can leave peices in people, well big suprise... Mine isn't that type! So now I have ot go sleep in a hospital. My Mommy said I am a pro at it. Little does she know I am older and faster now. I will put up a fight.
Anyway, Please visit my special friend's website: www.caringbridge.org/ga/haley Her Mommy and My Mommy are always on the phone gabbing, about me and Haley. Goodness gracious. Haley and I must be really special. Why don't you go check out her web page and sign her book? That would really make me happy.
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