Monday, September 22, 2008 8:10 AM CDT

If you haven't been to ANGEL HALEY'S SITE, please visit and keep them in your prayers.

On our support forum we lost another baby this week. Baby Gavin was only 2 weeks shy of his 1st birthday. He died waiting for a liver. Please in honor of these angels choose to be an organ donor.

I wanted to update and share with you about Aiden's T shirts, and the enormous yard sale we are doing this following week, but instead, this just needs to be a time where we get down to basics.

BE AN ORGAN AND TISSUE DONOR...

ALSO LOOK FOR A PLACE THAT IS DOING A FREE BONEMARROW REGISTRY.. SO MANY CHILDREN NEED THIS GIFT, AND TO GET ON THAT LIST TAKES NOTHING MORE THAN A SWAB OF YOUR CHEEK.

PRAYING THAT ALL CHILDHOOD ILLNESS ENDS... PRAYING FOR THESE WARRIOR CHILDREN, AND THE ANGELS CALLED HOME.


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PREVIOUS UPDATE

Home... we are finally home.

We have this gadget on our van and it tells you how many hours you have been driving the vehicle. Since we left St. Pete on Saturday of last week.. we had driven 42 hours. I would say almost all of that was with out a dvd player for the kids. No wonder I am exhausted and allowing TV's, and the wii to be played all day. Phew!

I will start with the present information, then go backwards a little.. there is so much. As of this morning, Aiden seems to be in the least amount of pain from his surgery. He looks good, and he was so happy to be in his bed amoungst all his stuffed animals "that missed him".

Mason is playing puzzles and games, ones he hadn't touched in months.. now we are home and they are acting like we were stranded on an island with nothing... like feasting on the stuff they have! lol... (note to self..pack a few more toys)

Overall, I am home and really emotional and just peaceful knowing that we are 'done' for a while. We have a plan, we are now just waiting for Aiden to either have an episode, or improve on his own. It is a better feeling, and Joey and I thrive off of this lifestyle, because we can be in the midst of denial very easily like this. Just be regular until something comes up.

Aiden's first baseball game was supposed to be tonight, but he isn't allowed to play since he just had surgery. He can play mid next week. I am going to call his coach and discuss what he thinks would be best for Aiden. It is a judgement call.. I can't tell if bringing him to the game to just watch/ dress is bad or good for Aiden. I just don't know yet. We will see.

In the mean time, I am just thrilled to come home to a clean house and thrilled that I have almost everything already unpacked! That says just how happy we are to be home! I have no time for hermit hood this week! Mason's 3rd birthday is tomorrow!!!!! My precious pumpkin miracle is going to be 3! I am so excited for him, although he insists he will be 7 years old tomorrow.

As far as medical stuff, we have to get some labs and stuff done on Mason, just to check the growth and follow up on his 'stuff' and then we are calm.

Friday's appiontments and tests for Aiden didn't go exactly as planned, but now thankfull in our past! I keep screwing up and telling Aiden these "for sures" and they never seem to be like we think. we were totally under the impression they would use his port for all the testing, and no more boo boos, but he still needed and IV to inject certian dye in his veins for the GFR kidney tests.. He was devastated.. but nothing compared to as how mad he was that he had to lay on a big CT type machine for 11 minutes as the dye went through his kidneys. It was a bad moment, that could have been prevented if I was home to get the information package that was sent to our home. (recieved it last night) Lets just say, I felt terrible for him, but as usual he put it behind him as soon as he was able. He is my hero.

We barely had 15 minutes between tests on friday to eat anything, we were rushing late to all appiontments because one would hold us up. Finally we made it to our Last appointment with Dr. Yazigi and just nearly collapsed. It was the summary of the week, the year and just everything going on with his sick body.

Dr. Yazigi was so compassionate and loving towards Aiden. she gave him a long hug, and told us how he amazes her how well he looks when things are going so wrong with his systems. It was when she was leaving that she rested her chin on his head and gave him a kiss on the cheek, that I had to fight back tears. How does a mother react to that. The person who really truly has Aiden's life in her hands cares so deeply. You can see her moved by all he endures. You can see her concern.

She said, that we will continue to drop the prednisone. We are in uncharted territory. At THIS point Aiden is on the ultimate lowest dose he has ever been on in his lifetime. Ever. We are very very slowly weaning him from a 6 year dose of prednisone. This is something that can be very very difficult and dangerous, so once down 1 more mg we will have endocrinology step in to help with his wean. Once he is down to the level of prednisone that is equivelant to what an adrenal gland in a healthy body would produce, we will switch to a medication called cortef .. a different type of steriods, and he will remain on that indefffinitly. This is to help with addison's disease type symptoms with his autonomic stuff. pretty classic drug for this type of issue.

IN THE MEAN TIME, the moment I came in last night I pulled out fridge calender down and marked Oct 6 where we will drop again 1 mg. I am anxious and excited and scared. It will all depend on how he does. How is allergies do.. how his liver does. WE WILL WAIT AND SEE!

THEY adressed the weight gain, the darker and brittle hair, and side effects from the steriods... they said that it MAY be december before we see a different kid. That is ok.. I will be honest it is hard to see him like this but not for the reasons it sounds. it isn't because I care if he is chunky .... I don't give a rat. It is because it is a constant reminder of what his sickness has done to him. I will say, we have seen his personality shine and come back to us. The depression/ sadness aspect of the steriods seems to have really gone away. Thank God!


Dr. Yazigi said, that she did feel like Aiden was in a more "safe place" because he has the heart monitor placed, and has immediate venous access with the port. In case of a criticle episode, we have him safer than before. Now we just pray that he will have a healing and not need any of this ever.

Over all this week in cincinnati was exhausted and productive. We have a lot of tests espeically hematology pending. Of course that stuff is rare and very unlikley, we are just so glad that it is being looked at so we don't miss something catastrophic. I will let you know when we hear anything.

I think that is all I can muster squeaking out of my tiny fried brain as of today. I am sitting here half thinking about Mason's birthday and How I managed to be so lucky to have these amazing boys. I want to freeze time and keep them little forever. I love this age.. I love them so much.


SO.. NOW LETS MOVE ON TO THE SECOND WONDERFUL DAY OF OUR TRIP ON THE CHOO CHOO TRAIN!!

ALL ABOARD!!!!


ok so if you are just now checking out the page and your head is swirling and you don't know what I am talking about, there is a handy link on this page called the journal history. Check it out.. it has everything for the past 4 or so years.. and yes last week too. :)


so as we all recall, the GSMR was ridiculously gracious to our family. For no other reason than they are litterally angels on Earth did they pull all the stops for our family. Aiden is still on cloud 9 and is insistant he wear his enginener uniform for halloween.

When we woke up for our 10:00 four and a half hour train ride, we just assumed we would enjoy a ride, that was it. the day before he was given this very special treatment, was allowed to actually DRIVE the train. BUT it didn't stop there. We walk into the bustling train depot to be greeted by so many smiling faces, some with tears brimming. Immediatly, "Aiden you are our special guest today!" And they handed him his own Thomas whistle.




Here the boys are on the steps of the DEPOT.

Moments later our personal favorite person Thomas "the breakman/ conductor" comes out and Aiden runs to give him a huge hug. He was amazing. Thomas if you are reading this, thank you!!! he leaned down to Aiden and handed him a tiny red cabbose key chain. He told Aiden that he had gone home and thought of Aiden late at night, and remembered his red caboose keychain. He said the conductor gave it to HIM on his first day at the railroad... and he wanted to give it to Aiden. Of course I understood the impact of that, and just welled up with tears... what a precious gift.




Thomas and Aiden.. with the red caboose.

They told us that lunch was "on them" and we just were shocked! So much, and for no reason other than kindness! We heeaded towards all the people, there was live music, with mountain men in overalls and with banjos. people were excited to board the big engine for their ride. I realize that the whoel crew is standing there waiting for ME to come with them and stop taking photos, cause they were letting Aiden on FIRST!. they walk past all the people waiting in line behind the roped off area, and opened it up for Aiden. The conductor stood there as Aiden handed him his ticket. He was lookig over his shoulder at me so nervously, like he was meeting Santa or someone else he had always dreamed of.


Right before we went on, some of the depot workers had excitedly run out to see Aiden board the train first and handed him and Mason their own train toy. Aiden took his big climb onto that train, and I litterally gasped, thinking of what he must had been feeling.



Since we were the first people on the train, we also got to pick out our own seats in the nice air conditioned coach. The boys were so excited, and I was thrilled with the whole comfort of it all..




Mason standing on the seat looking out the window of the train




Joey and I were so happy!


The whistles blew, everyone took their seats and the train slowly crept along. We moved past the depot where all our special friends were waiting outside waving at Aiden. Aiden waved back, from the belly of a real train.. it was like a dream come true.





The views were astounding! Let's face it, we were in the GREAT SMOKEY MOUNTAINS! the boys would rest their chins on the windows and just stare. Not saying a word, but just stare.. (why exactly this does't happen during our 42 hours in the car is beyond me)











I can't think of the last time our family has sat together, just talking, resting, and enjoying each other with not one moment of media. No tv, no games, no schedules, or grocery stores, no hospitals... just us. It was a time of reflection and a time of just soaking in how much I love them.




The train ride was heavenly, but when we stopped at the Nanahala outdoor center, we had so much fun, just skipping rocks and hanging out in the low low humidity and cool air. (note we are back in florida with 94 degree heat and dripping humidity) It was like sureal!

They told Aiden to come to the front of the engine when it was time to blow the 5 minute whistle. A new engine, and a new engineer.. this time his name was Eric, and he let Aiden climb aboard and blow the whistle.










from the driver's seat!

The train went back to the depot and Aiden fell asleep immediatly. The slow rocking over the tracks, was just all he needed. Joey and I just rubbed his hair whispering how much we loved him, how it was OUR pleasure to be able to be present for this special little boy's dreams coming true.



You know it wasn't but 24 hours later and Aiden was going through a real HELL before his surgery. But just as one of my friend's said to me (and I told her I was using this on the website) This train trip was like a WISH TRIP.. BUT THE WISH GRANTER WAS GOD.

I want to thank every single person at the GSMR... you have made our life better, and given us something to never forget. As I sit at home going over all the medical stuff we endurred, the train ride far overshadows all the pain.

At this moment, although there is so much more to share and tell you about, I just wanted to end on that note. No matter what, we are blessed and just so greatful for all the little reminders that God gave us on our special trip.

Thank you to all of those people, and to everyone else who worked together to help us during this hospital week. The folks in PERRY, the Gray's, Debbie and Johnny, so many others... Thank you to our liver friends we stayed with... You know how much we love you guys. A huge thank you to the GSMR... you all are heros to this family.

I am off to plan birthday snack for Mason, fishish the rest of our unpacking, and get back to normal life.

Love you all..

The Hawk family

edited to add: please visit ANGEL HALEY'S SITE

nearly 3 years ago, Haley passed away into the arms of Jesus.. for the mommy, this is just as raw and painful as it was that day, please lift her in your prayers. Cheryl we love you.

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Thursday, September 18, 2008 8:32 AM CDT

Friday am update:

Yesterday's appiontment with hematology was very very productive, we got our own hem/onc coordinator and it seems like a new doctor. At least for now. They did an incrediable set of testing. For things rare and unusual but that may or may not fit aiden and his polycythemia and hypereosinophilia. yep.. those were the two diagnosis we offically left with yesterday, but it wasn't really that new to us.

They are checking so many things that even the labs at this enormous hospital have never ever heard of. They are sending his hempglobin off to "national hemoglobin society" uhh yes.. I am imagining those people are a tad 'different'. They even had to send his labs off for some rare disease to MAYO clinic and needed a "control sample". The nurses were all laughing and just shocked at the hem/onc clinic because they have never had to do that. One of the nurses had to VOLUNTEER to be the control. That means that she had to get her blood drawn at the smae time as Aiden's. of course Joey stepped up to the plate and said, "No way.. use me! I don't mind getting my blood drawn" The nurse was much relieved. Of course Aiden was hysterical and thought that was the greatest moment ever.. him and daddy getting their blood drawn together. I pray to God it will tell us much.

We are looking at myeloproliferative diseases, CEL chronic eospinphillic luekemia, and comparing his Euthropietin levels with his hemoglobin.. amoung 20 other tests the labs never heard of.

The appointemnt was 4 1/2 hours.

Dr. Kalfa.. MD AND PHD AND EVERYTHING.. herself walked the blood samples directly to the lab. It was like watching her with a new born bird in her hands. Totally sureal.

SO.. to sum up the week.. This family who doesn't even have HIGH SPEED INTERNET AND IS STILL ON DIAL UP: had

a one of a kind titanium heart monitor that was just invented placed into Aiden's chest wall

and

the most rarest weirdest fancy hematology tests on just the one tiny microscopic cell in the body...

we are one high tech family now!


Today's schedule:

8:30 take off more blood liver, kidney, cholesterol, a1c etc

9:00 GFR STUDY.. a test on the filtration rate of Aiden's kidneys

this is a multi process 4 steps test over 1 1 /2 hours

10:30 Ultrasound on liver

break for lunch/ playtime

1:00 Liver/ Gi clinic

then get out of dodge!!!!

on our way back home....


I will update as I can, but have so much more to share and include. Especially a million amazing photos of this time.

aiden is doing good today and just is no worse for the wear. Can I just say that he is amazing!!! Always happy... I love that kid!

Ok so Updates to come, stay tuned

Ready for the finish line

Lisa
The exhausted team mom.



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Ok another quickie update... we are staying with some very gracious hosts, fellow transplant family, so we are feeling so greatful and just a lot more rested. Infact last night, went to tuck kids in bed, and I passed out from all of it.

anyway, as far as the surgery it didn't go as well as we hoped in a few areas. Of course the port access was a nightmare. I mean more than any type of panic he has had with Big Head Ed, this time a new nurse and she was about in tears saying "I feel so bad for him" He was screaming at the loudest he could begging to go home and stop. There is no reason to go into full details, but lets just say it was so awful. He hates accessing the port. Loves when it is hooked up, but hates that needle and grabbing the thing under his skin. So the anesthsoilogist resident was NOT listening to joey and I. He wanted to use versed, we told him no.. he can't have it.. he just ignored me.. he wanted to do a gas mask.. I told him no.. again not listening.. finally Joey and I said, "You know we will not let you take him back until you get the attending anesthiolgist in here!" he comes, and it was pretty obvious that the no-social skills resident was given a talkin-to. They never ever use versed and I will not let any 25 year old doogie Houser who was sent in to ask questions have any control over my son's anesthesia choices. Nope. So, the head anesthiolgist comes in and the head cardiologist was there (I say "head" because there were several cardiologists and several anesthiologists) They talk and understand that with Aiden's autonomic failure we aren't messing around. PHEW.. BUT STILL I gained at LEAST 10 more gray hairs from the no-social-skilled-resident. ugh...

In the MEANTIME... Aiden is hysterical and I just want to stop the questions and comfort my child. He is begging to go home and no more hospitals ever. He is crying tears of sadness not even fear. Joey and I held him and then it was time to go back. I don't know why on TV they have these peaceful "goodbyes" when a person goes to surgery, because that doesn't happen.

so they couldn't do a gas, and they can't do versed, and they can't do propofol cause of allergies.. so we just put him outside the surgery room door and they injected pentothal (the big gun) right there while we held him. I chanted, "remember the trains.. remember the trains" I think he was correcting me as he fell asleep mid sentence.. "ACTUALLY....It wasn't a train.. it was a diesel engi...nnnn....ee......"

We leave the surgery area/suite (again the word suite was used in a very loose term) and the nurse was walking us back to waiting area just rambling on about coffee and where to sit, I just stopped and hugged Joey. The tears just come now, I can't hold them back. My poor baby has lived so much hell.

It was a very quick surgery they called us in about 1 hour. But they explained when they found the place for the monitor over his heart, it had a very high voltage reading. BUT once they cut into him, placed it under the skin, it read at the absolute minimum they allow. The electrophysiologist said it was reading 5 times better by the numbers until they placed it in him. sigh. They (his 2 doctors) explained that once it was healing maybe it would pick up better.

I got to see him in his recovery, and he was already sassing the nurse. PRETTY NURSES.... Aiden puts on the charm. He looked good, but the pain was pretty bad at first, then he said, "I would like you all to put me to sleep with a regular IV, then when I am out hook me up with my port." It was a clear directive that we will probably follow. My 6 year old is just too old for his age.


After several hours in the PACU he was ready to go home. He had a pain block on the surgery site, so he was just dizzy. We decided to take him to the aquarium, since the hospital gives discounts and he could just ride in the wheel chair looking around. We had a great time.

And again, I have wonderful photos to share later.. once I get them on a disk.

Today we meet with hematolgy, (see journal history for a link to the specific doctor we will see). I am looking forward to this appointment there will be no boo boos and she may have insight that can help. Maybe... who knows.

Aiden doesn't understand why he has to go at all, if we are just "talking". I think he is making a lot of sense.

Anyway, more updates to come.. for now we are off to explore the area, and visit a train store. yep more trains. chooo choooo... (ugh)

Lots of love and gray hairs,

Lisa

The Team mom.

XXOOXO

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Wednesday, September 17, 2008 5:30 AM CDT

Up and dressed and ready for surgery.. I have butterflies in my throat, and Joey woke up with out alarm at 5 AM. Of course it might have something to do with this "hotel" we were re-routed to. Yes 800,000 people in the area with out power in my guestbook didn't really equate to me.. booked hotel rooms. sigh. so we are staying at a rather less desirable facility. Let's just say that the terms "suites" and "spa" are being used very very loosely now a days. The shampoo on the back of the toilet seat read : "secret spa shampoo" and I am seriously doubting that is ANY spa's secret.

anyway, All is quiet, I am trying to remember ALL the peace and joy we have shared in the last two days. I think it was possibly some of our best times together. I feel so close to Joey again, just sitting and talking and holding hands. we haven't had a dvd player this trip so we all were "old schoolin" it with singing songs, coloring, and yes the frequent fight in the back seat.

This morning should be a very minor surgery, but the thoughts of them accessing his port, and how much it terrifies him really has me on edge. He can't have happy gas because it does something to his vessles.. hypothetically, and so it is the liquid juice he needs in his port.

Anyway, I just want to thank you all for the kind words you have sent.. and most of all the prayers. This morning will be a big morning, so keep them coming.

I need to run now, but wanted to update a tad on the way to the hospital. The big teaster is the second day of photos and that story... hang in there, it will come, just haven't had time yet.

Love you all!!!!!

The Team Mom,
Lisa

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Monday, September 15, 2008 6:49 AM CDT

Updated with a photo montage so you can see the first set of photos for this day... yesterday was amazing.. even better than the first, I will update those later tonight.. I hope you enjoy the photos.. the next set are even more amazing.

xxoxoxoxo

Make an on-line slide show at www.OneTrueMedia.com

previous update
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I litterally have only moments to update this... but I just want to let you all know that we arrived yesterday to BRYSON CITY and it was honest to GOD the best day I have had (excluding medical miracles) with my family. I was a tearful mess, just beaming and crying with joy for Aiden.

I Will tell the whole story this evening along with what today was like (we are doing the 4 1/2 hour train today) but let me just say... when the train arrived Thomas the brakeman/conductor was waiting on the tracks for us, gave Aiden a huge hug, and got on his walkie talkie called into the engine and said, "I got Aiden.. he is here with his family.. I am bringing him up."

I shook and just could feel Aiden clinging on to my leg, looking up at me just beaming. Not only did they let me climb into the engine, meet the engineer...(whose name was DALE! Aiden's God brother's name!) they did the unthinkable.

The unhooked the engine, and took us on our own private ride out of the train yard. JUST US! The engineer, (in overalls and all) leaned in and said to Aiden the words that just made me litterally cry out...

"Hey AIDEN do you wanna drive the train!"

There wasn't a shy second for Aiden... he RAN OVER to the engineer's seat, and jumped in.

(I need to say that yesterday was a horrible day for Aiden he was very ill and just about the worst engergy I have seen so if you notice in the photos how red and hot and miserable he looks.. just know that his words AND INSIDES were just pure joy and happiness. It was the best day of his life.)

As aiden climbed in the chair the engineer showed him which levers to pull and then Aiden pulled the whistle and bells. I think the most precious part was when aiden helped with the real switch track!

Here are some photos....I took so many that I litterally filled the entire card! This is just a quick selection, the rest will be on here soon.



WAITING.. WAITING.. THE TRAIN WAS ALMOST HERE!





THE BIG CLIMB INTO THE TRAIN ENGINE





YOU DESERVE SO MANY HAPPY DAYS AIDEN!



THE LOOK ON THE CONDUCTOR'S FACE WHEN AIDEN WAS DRIVING




AIDEN DRIVING...



A VERY SERIOUS ENGINEER!




SMILES




ALL OF US

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Like I said, It was a day full like we had ever dreamed and more.. last night he was laying in bed, eyes closed, and would just say ... "chooooo chooooooooo".... Just a choo choo. I knew what he was dreaming about. I knew it was what he has always dreamed about. He is my child, he is my life.. This day was something he has thought could never happen. Thank GOD for the people at GSMR. They have brought us something we could never ever provide.

Today we will be taking our train ride for 4 1/2 hours over the smoke mountains... I will update soon tonight with better pictures and more details.. So many things happened that i want to tell you all.

As an aside- please pray for Aiden.. he isn't well and I want today to see our bouncy boy. pray he is feeling the best he can feel.

Rolling down the line
The Hawk Family!

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Friday, September 12, 2008 7:01 PM CDT

TODAY IS THE DAY FOR LINKS.. CLICK ON THE BLUE WRITING IF YOU WANNA KNOW MORE.. I KNOW THIS IS A LOT OF COMPLICATED INFORMATION, AND SOME PEOPLE ARE NEW HERE... AND LIKE THE OLD ME DON'T HAVE A MEDICAL DEGREE LOL

(LISA- M.D. MOMMY DOCTOR)


We are leaving in the morning for Cincinnati!



To recap and fill ya'll in, back in Febuary, we met with Dr. Blair Grubb (Aiden's dysautonomia specialist) wanted Aiden to have a heart monitor placed in his chest, just under the skin. He was suspecting that Aiden's heart was possily stopping in the middle of the night before one of his "episodes" then triggering Aiden's episode as he woke up, sat up and then changed his blood pressure. In theory it causes a cascade of his autonomic system to just go haywire with a sympathic nervous system responce.

PHEW! THAT IS A LOT OF BIG WORDS!


Anyway, so we have tried with no success to get this heart monitor placed. The local guys said, "no one will ever do it." Then we found the top cardiologist in cincinnati who writes all the text books (voted one of AMERICA'S TOP DOCTORS 2008) and he said.. YES! He would do the heart monitor not a problem, but wanted to wait till he had another episode. So THEN... Aiden has an episode- we go up there, and he says NO. Too much steriods.

ugh!

so that brings us to next wednesday.. The heart monitor surgery is finally going to happen. And I guess in a weird way I am happy. Not happy my son has another surgery and I made the STUPID mistake telling him after his port that he will never have another surgery in his life. (desperate times call for desperate lies) But I am happy he will have this darn thing placed so we can find out the rather important fact if his heart is stopping. Take my word, I will be sleeping better!

ok let me add a spot for FAQ:

QUESTION: why don't they just do a holtor monitor or an external event monitor?

ANSWER: We did... several times and we only find that he has bradycardia at night. A very low heart rate. But since his episodes are so infrequent I can't exactly have him hooked up to a bunch of wires every day.

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QUESTION: How will this monitor work, if it is under the skin? Why have I never heard of this ? !

ANSWER: It is a totally state of the art medical gadgit. Aiden is totally cutting edge! (she says rolling her eyes) Here is a link about it:

http://wwwp.medtronic.com/Newsroom/ImageLibraryDetails.do?itemId=1197562216640&lang=en_US


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QUESTION: What happens if his heart IS stopping ? !

ANSWER: First we drop to our knees that Aiden has survived. THEN he gets a pace maker.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


So tomorrow we will leave and Joey took the entire week off of work. shockingly the 23rd is Mason's birthday and this all isn't scheduled on that day! I am suspecting drama will insue but remaining positive! lol.

So besides that... we will also be seeing another very fancy shmancy doctor... here is another link:


Dr. Kalfa hemoatology/oncology


She specializes in a few things but mainly just the red blood cell.. so maybe she will provide some clues as to why we can't no matter what, lower that cell in his blood levels. We need to know is his bone marrow over producing or his his blood concentrated so bad from his issues?

I am soo excited for this appointment! Personally I think this will tell us soo much! (and please ignore the aspect that she is an oncologist.. it is the hematolgy part we are seeing. Aiden does not have cancer) My poor coordinator nearly has a nervous breakdown when she was told all the things we needed to schedule for him in umm 2 day notice. I emailed her and called her the scheduling goddess... I might get her a name badge that says that.

Ok bla bla bla.. there is plenty and plenty of time to talk about all these blue links and fancy terms.. but here is the best link I want you all to click on!

click here! click here!


AIDEN IS GOING TO RIDE ON THIS TRAIN! You all know that this by far is the greatest passion Aiden has. I would like to call it an obsession bordering addiction. How many times have I sat on youtube watching steam engines going around and around.

Joey and I have just watched Aiden have soooo many unfair unequal things and just plain awful things happen to him this summer and year. Joey and I have felt helpless while has lost an entire summer, no swimming, and heck just unable to even walk out side. HECK MY 6 YEAR OLD HAS STRETCH MARKS! Talk about not fair! So we were really thrilled to be able to just say, 'Aiden we are going to have a mini vacation (if you wanna call one night on the way to a hospital to have surgery a vacation) and take you on this train in the mountains.'

So I NEVER EVER EVER pull the "I have a sick kid" card. NEVER. But you know what... I did this time. These people were so receptive I want to share with you so everyone in the world who ever visits to mountains will send buisness to these people.

I emailed the info at the train station and just said, "we will be coming up trying to make a special day for our son, and wanted to know if ever there is a chance he can meet the engineer"..... They replied with a phone number and asked me to call them. I was so excited because this was the place we took Aiden 2 years ago exactly on our "family vacation". We never got to ride the train, we figured we would do it another time... but he did take photos in front of it.



This morning I called them and just briefly explained our situation. Just said, "We live in Florida and Aiden was going to have surgery again in cinci and just wanted to give him a very very special day." They were so nice and just said, "Yes people do it all the time, come early and meet the conductor."

She began to tell me in her sweetest southern drawl about the 4 1/2 hour journey in the great smokey mountains via train. Just as I am crying typing this... the water works flowed. She told me about the tressles and the tracks. How they went to a gorge and then over rivers and rolling hills.. I don't know if anyone understands what this means to us.

It is something I have shared with closest friends and now something I will share with you all.. every night and during every single surgery, blood draw, night in the hospital.. every single time he closes his eyes and I tuck him in, we always say, "dream about the Island of Sodor." The Island of Sodor is where Thomas the Tank engine lives. In every Christmas letter to Santa, and in every prayer he prayS to God, and every single "I wish I may I wish I might...", Aiden has PRAYED that the Island of Sodor was real. I have always told him it was real in his dreams.

In May when he was scoped and under anesthesia, I chanted to him as he fought and screamed to not have that mask, I kept saying, "AIDEN DREAM ABOUT BEING ON THE ISLAND OF SODOR WHERE YOU CAN DRIVE THE TRAINS AND THEY ARE REAL" He says he tries.

More than once, as he has talked to me about Heaven, he has refferred to it as the Island of Sodor, where there are children riding trains and happy and going over rivers and streams. I think that is a precious thought.



Here was what Santa brought him for Christmas last year...






YOU GET THE PICTURE... THIS IS BIG



so back to the lady on the phone.. so as she spoke to me all about the scenery and the trains, I am blubbering. I apologize for being emotional, I never really am, but just a few things trigger me. We hang up the phone, and excitedly Aiden and I search the website for all the photos.

ring ring... ring ring

My phone rings, and it is the wonderful lady from the train place! She calls me back, and says, "We are going to comp you your tickets for your train ride.. we do it all the time for people and emoplyees etc..and this is a time we just want to do this for your son."

What?! This is just one of those moments that you just can't believe..but it was like everything was perfect and just ment to be. When we get dealt a crappy hand, sometimes God deals us out a few wild cards. So now.. I am really crying, and thanking them. I just didn't have any words really to say. I was by no means asking even for a discount! Just wanted him to meet the conductor.

So needless to say, I can't wait to meet them up there in that sleepy train town, to thank them for this gift to our family. We just need to have this time together, building memories and taking time to feel the joy of life.

You know, if someone told me one year ago, even in the midst of 7 admission in the fall, that Aiden would get this complicated and this sick, I would have never believed them. Sometimes it is shocking to me. I still look at my life and think HOW did we get to this place, and why? I never find the answers really. I just stop asking that question.

For now, I am hopeful again, excited and scared about next week. I feel the arms of people supporting us, I know that we are covered in prayer. My heart is heavy because three years ago my best friend Cheryl was spending what would be the last few weeks left with their daughter Haley. She died suddenly with no warning. I do smile knowing that Cheryl already knew the lesson of living each day as if it was our last... how she embraced her child daily with love and adoration. Living in the moments they were given together. I stop and ask myself, do I do that every day? Do I remember to soak it up and take each moment as a gift? DO you? Are you looking at your children and knowing that they are blessed and tremendous blessings? For the most part, I can say that I am. Aiden's sickness has taught me that. Haley's death reminded us of that.

Tonight as we finish packing up our house then lay our heads on our pillow.. I can already feel it, I won't be dreaming of IV's, hospitals and surgeries. I can already feel the cool mountain wind whipping in our faces, and see the smile on Aiden's face as we take him to do something that he deserves and has earned to do. I am so thankful we get to do this with him. God is so good... and we are so greatful.

FOCUSING ON THE JOY,
LISA

updates to come!

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Tuesday, September 9, 2008 4:16 PM CDT

Whooo hooo.. Lisa from my guestbook! 300,000th visitor! I love how you wrote it, in the ps/ part of the journal entry. Like Oh and uhhhh.. I was 300,000!! LOL I was so excited! of course you didn't post your email, so if you wanna email me, aiden will send you one of his drawings! Hand signed! RolexH@aol.com

To all others, and karen karen karen karen (lol) thanks so much for the notes and playing along! Now only another 9 months or so to get to 400,000... Thank you for stopping by and reading about our little family and our big miracles Aiden and Mason!


update


Wow Aiden has been feeling amazing lately. Yes with the lowered steriods we are having some GI issues, and HIVES, but other than that..He has more energy and just looks like some of the weight is coming off a tad. We had that thing we had hoped and pray for come true.. we got a reprieve. A break from all the bad news and more bad news. When our pediatrician went to bat for Aiden and called me to tell me that they were waiting on the fluids, it was just exactly what we needed. Just needed some time. As a family to have fun and enjoy just being somewhat normal.

So IF YOU LIVE IN FLORIDA.. what else is there to do in the middle of summer(yes it IS still summer in florida!) but swim! When I hear we needed to reaccess his port and run nightly IV fluids on him again, I thought, NO!!! we never made it to the beach! So on Saturday, after joey worked some, we made it to the beach! It was a gamble with him unable to tollerate the heat well, but once in the water, and with lots of ice cold gatoraide and watermelon he did fine. well, better than fine, he did wonderful!




the boys just arriving all excited to go swim and dig in the sand!!




riding the surf!



Mason and Joey having deep thoughts, and looking for little fishies to catch.

It was sooo fun, well until the storms (aka hurricanes) brought in the jelly fish. so we decided to pack it up and head to my parent's pool.



The boys in their towels, ready to go to MiMi's!



Mason in the pool.. he loves to swim!



Joey as usual doing some bizarre acrobatics with the boys. He has the need to throw them, flip them, and put them on his shoulders whenever swimming.




Aiden lounging in the pool. It was so great to see him like this. Even if it is only 2 pounds that he has lost, aiden was swimming better and able to even go under and hold his breath for a moment or two. I sat there watching just letting out tiny exhales. It is like we have been holding our breath waiting for our boy to come back to us the way he always was. Yes he has always been sick... but until this year he was never so weak, out breath, and big from the steriods. This is the first time I felt like I had a sick kid, EVERY SINGLE DAY. Not just when he is in the hospital.. but every day. So each day I see him improve it is little moments where we exhale, hoping to exhale all the way soon.

Anyway, we had a great weekend, well all except the 7 hours joey had to dig up our plumbing because it was completely backed up. Poor joey on the roof with a snake, then in the pipes and caps and all these other fancy plumbing places. Of course with a house that is 60 years old, it wasn't so easy. Here is Joey in a huge hole working his tail off getting it all fixed.






Look at my MAN! ok so yes I admit, I am only posting this cause this is one of the reason I love this man! some women want their mate to pick them up in a fancy car, wear designer clothes, and say all the smooth things to them. I on the other hand love a hard workin may-an (that is the word 'man' with a deep southern drawl) that takes care of this family. I know he is deeply dissapointed about not getting that job, but lets just say with out getting into details about it, everyone (including those who interviewed for the job) were all shocked joey didn't get it. It really made no sense. So in those cases I like to think, well it must have been God protecting us from something! Better things out there to come, WHO KNOWS! But it wasn't ours to lose so what can we do about it.


So anyway, we had a wonderful weekend. FINALLY SEPTEMTBER.. AND IT WAS A GOOD WEEKEND. I can't believe our entire summer has been sick. Why do kids ever have to be sick. It makes no sense, and it just makes me feel so confused. I think of this weekend and smile thinking, Thank GOD we got to have a little summer like it used to be.

There is a large, maybe HUGE, possibility we are leaving for cincinnati this weekend. I spoke to Aiden's cardiologist in cinci and he said he would schedule Aiden's surgery for the week of the 16th. While there we will have aiden's annual appointment, as well as see a very special hematologist who specializes just in red blood cells and research on issues with them! Cinci is amazing, 32 clinical hematologists on staff. THIRTY TWO! and we get to see one that specializes in one tiny microscopic cell that is wrong with Aiden. What a miracle!

You may have read the word "annual" in the previous paragraph. You might wonder what that is. That is the appointment that we do every year. He gets his bones dexascan, eyes, hearing, labs, cholesterol, and kidney tests. This is the normal (yes i did say NORMAL) LIVER ANNUAL POST TRANSPLANT VISIT. And with out jumping the gun, and getting too far ahead of myself, aiden will also soon be coming off his prograf (anti-rejection medicine) to help stop the GOD AWFUL new disease process he has with his autnomic nervous system. I can't wait!!!!!! Just can't wait!!! (for those wondering, he will go on another antirejection drug called rappamune in replace of the prograf)


I have sooo many other things to tell you, but I will end on one tiny other thing... even though he isn't really well enough to start, and be in the heat, tomorrow Aiden will have his very first night of baseball practice. NOT T BALL.. BUT BASEBALL! He is playing on the "big fields" with the REAL dugouts. I realize he probably can't even run bases anymore, or heck even walk all the bases, but this will be a type of medicine for him that will bring healing, like all those chemicals and IV'S can't bring.

I can't wait.












I LOVE these photos, it brings tears to my eyes, I can't help it. Just months ago.






Aiden, we love you.. we will get you all better soon. I can't wait to see you play ball this season as a big boy with no T and in the big dug outs. You are my hero, you are a fighter. You have amazed all of us in this journey and I promise we will get past this very short time where you feel so badly. Mommy will have her cheering section with baby brother and Daddy there to make sure this is the best season ever. Love you my sweet angel... Mommy



Update coming.. there is so much more, but for now, I am just happy to end it rejoicing in good news

Love,
The entire Hawk family!
Joey, Lisa, Aiden, Mason, Rolex, and Biscuit (the puppy with the smallest bladder ever)

"Many are the plans in a man's heart, But it is the Lord's purpose that prevails. " Proverbs 19:21

---

Thursday, September 4, 2008 12:30 AM CDT

UPDATE: 2 THINGS GOOD NEWS AND BAD NEWS

GOOD NEWS: Aiden is not going to have to get the IV'S NOW!!!they changed their mind temporarily. I am taking this as a prayer answered. We needed this break and peace. Thank GOD!!!


BAD NEWS: Joey did NOT get the job we had been hoping for. He is pretty shocked, cause even the people who were going for the job were rooting for him. It just wasn't meant to be... pray something like that can open up if it is meant to be. We could use that for sure.

below is my previous update:



~~~~~~~~~~~~~~~~~~~~~~~~~~~

Well it has been a while since I updated cause I have a hard time talking about all of this. Yes that means I am actually... GASP... at a loss for words. You know this is serious when I don't want to talk.

So in the new tradition of avoiding talking about all the heavy stuff that weighs on Joey's and my heart, I thought I would let you know about Mason first then I will get to Aiden. Mason, WILL BE TURNING THREE in 3 weeks and has started a 2 mornings a week at a preschool. YES homeschool mom, sending a kid to school. GO FIGURE. The thing about school for Mason is that he isn't potty trained, doesn't eat food, and has some mild physical delay, and it all of that is ok for now. He will remain with the 2 year olds, and it works well.

It has been very hard for him with his separation but I know it will be a tool of continued therapy. Mason still is attending both Occupational therapy and speech therapy. He is is specifically working on feeding currently. He doesn't eat. Plain and simple, he drinks his nutrition, refuses food of all kinds, and is working his tail off on therapy to accept food and eat. Granted you may read this and wonder 'DOES HE NOT EVER EAT!', yes he WILL eat somethings, but it isn't much. This is NOT the story of the picky 2 year old, trust me.




here he is in therapy at All Children's sitting in his feeding chair working hard on ... umm... eating!


Yes i know it sounds crazy, this is why I never talk about this, cause I can feel the discerning eye looking confused at us. When asked I always let everyone know how amazing Mason has done, how he can run and laugh and is so smart. I am sure if I didn't have another child that basically has a body that isn't cooperating at all.. I would be only talking about how difficult and frustrating this is.. .BUT.. I look at Mason, and know he has come so far!


The other child... Aiden...


BIG HEAVY DEEP SIGH

It is true, lately I have HIT that proverbial 'LIMIT'. I have not once, but several times, found myself in tears feeling like I am failing. Of course I know that I am also succeeding, but am battling something that has determined to make me a failure. I have looked and searched for a reprieve. It does come, we have joy & we have peace, but then it seems like it is swiped up pretty quickly.

I was chatting with a friend today, telling her I know others looking in on our lives would assume Joey and I are depressed or needing medication or are in a desperate way.... the thing is... and this comes from the therapist.. I am NOT depressed. I am a happy person. I am having NORMAL feelings to a difficult situation. MY SON IS SICK.. HAS BEEN SICK FOR 6 YEARS.. IT JUST SUCKS. Are we not supposed to feel bad ever! It happens. We feel bad, and it is ok. IT is normal for any parent in this place to feel bad. WE WOULD BE SICKOS if this was ok with Joey and I.

I preserve this caringbridge page to "getting it all out."

I get to tell everyone what is the story, the plan, all about the medical stuff for my son. I often get to use this as a platform to express my pain, joy, relief, love, happiness, anger.. etc. BUT please know, it is a moment in time for me. I AM NOT staring out windows, wiping drool off my chin because this has controlled our lives.


WE WILL NOT GIVE ILLNESS VICTORY!

Instead, here I come as a tool of therapy to share the things I don't and will not utter out loud. Things like this:

They want to do the nightly IV's again. MORE of them.. He was on 500ml's a night, now it will be 750ml's a night. Then after we pump more IV fluids in his veins because he can't keep fluid in his vessles, we will allow him to wake up and then give him a diuretic to get RID of the fluid the seeped out of his vessles to his tissues. THIS in itself, if you stop and think about it, just says.. his body isn't working right.

We are lowering the prednisone now even more. He, as you can tell from the pictures, is extremely cushoniod. This is a fancy word for he has gained a ton of weight. So in an attempt to get him to drop this weight faster we will lower more than it has ever been in his lifetime. I am teary eyed with fear of this and excitement in the same thought. I personally believe he will be an allergic disaster, but I also remain HOPEFUL he will be ok and even better. I am waiting for his scheduled surgery time for his heart monitor to be placed, and then we will schedule our 'big' trip to cinci. During that trip we will meet with a hematologist again, just to discuss the strange hematological issues, Giant platelets, atypical lymphocytes and high red blood cells.


When we finally tweak medication after medication.. get more stable.. then Aiden hopefully soon will come off his prograf and we pray and hope he will not reject his liver.

The failures of medicine and the failures of his body are all moments for learning and planning. Not one person who is involved in Aiden's care is not passionately careful and concerned. Aiden is one in a million. This is bizarre and unusual. And frankly it sucks. But we will get there.

Yes I hate the IV fluids. I hate him being hooked up and uncomfortable, and sad. I hate that he can't swim with it, but I am reminding myself in time this will balance out. It will. It has to.

PLEASE pray that Aiden gets a break. That our family gets a break. Some peace in all of this. Please pray we get answers, wisdom for his doctors, and just unending JOY for Aiden.

I can't thank you enough for being patient, especially my friends. I know you have called. I know a few of you leave messages and just don't give up. I am owing a lot of people thank you notes, Mina- thank you. Yours is coming. I am just sort of behind on being a good friend to others right now. I do apologize.

We are waiting the news on when to start his IV fluids again. I already decided that if we have to I am waiting till Saturday so BiG HEAD ED can do it.

OK YES.. it isn't so much fun on this website. So I will leave you with photo that makes me smile. Just darn it.. it does.


here is Aiden in the hospital a few weeks ago. He and his best buddy had jacked up the $5000 bed as high as it could go so they could touch the roof. I don't know what makes me so stinking happy about this picture. Maybe because it is kids being kids in a very unconventional place.
But more to me, it seems like a metaphor for this crazy road we are on...




"We may be stuck in bed, but at least we are breaking the rules and having fun!"



Guestbook Game: we are close to the 300,000 mark on the page.. if you are that 300,000th visitor please sign the guestbook! Aiden loves this game! Also thank you for the people who do the jokes in the guestbook! We (especially joey) love them! Aiden has been retelling the 'IF A COW FALLS ON YOU .. MOOOOOOOOOVE' joke. Thanks HUGO!

Waiting for an incrediable healing,

The HAWK FAMILY!

---

Friday, August 29, 2008 7:38 AM CDT

Guestbook contest! If you happen to be the 300,000th person on the site please sign the guestbook! Aiden loves this game! Just check below at the ticker on the bottom of that page! But don't cheat! :-) or if you do don't tell me! LOL

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Update:

Friday morning, and we slept in till 8:00 this morning. ALL of us. This small miracle was only possible because yesterday Aiden had his port de-accessed! That means we took the exterior line from his chest and now he has just the port under his skin. No beeping machines and uncomfortable IV'S at night!

WITH OUT GETTING INTO DETAILS.. cause frankly I am spent and don't want to relive it again, it was not a good experience. He fainted, and it was yucky. moving on...


So our pediatrician and I together decided it was time for us to just stop the nightly IV fluids. It is shocking that it didn't work. I clearly am not smart enough to wrap my brain around the complexity of this. I do know that with talking to his doctor yesterday, one thing is for sure, we are all on the exact same page, with the same goals, and the same understanding of the importance of quality of life. It is one of those things Joey and I just exhale and feel so relieved over, is this amazing set of doctors we have.

I hate talking about this all. I think it feels so heavy and negative. I just deleted 3 paragraphs I had written...I think instead, I just would rather say how proud I am of aiden. I am so proud of him.

Sometimes I look at Aiden and I wonder how he actually does this all. How he can find so much laughter and joy and have such a resiliant heart. I know that Joey and I DO have a part in that, I don't pretend to say that it isn't something we haven't worked on consiously since he was born. Live for today, focus on our gifts. But there is a supernatural aspect to Aiden with his peace and understanding.

John 14:18

"I will not leave you comfortless: I will come to you."


I hope God comes to him and comforts him. I hope that in his dreams he has a special peace and happiness. I love Aiden so much and can't wait to see him better.

I know the IV fluids didn't work until after the crisis, but we will still have our miracle and healing! I just know it.

Full of HOPE and excited for our miracle...

Lisa

---

Sunday, August 24, 2008 11:04 PM CDT

NEW CONTEST!!!

WE ARE ABOUT TO HIT 300,000 HITS ON THE SITE! OK..NOOOO CHEATING AND CLICKING A BUNCH.. BUT IF YOU SO HAPPEN TO SCROLL DOWN AND BE THE 300,000'TH PERSON PLEASE SIGN THE GUESTBOOK AND LET US KNOW!!! AIDEN LOVES THIS GAME! AND MAYBE YOU WILL BE THE WINNER OF A HAND SIGNED COLORING PAGE BY AIDEN! YAY!!!



NOW TO THE UPDATE:




Daddy: "Aiden, brush your teeth or you will get cavities"

Aiden: "what EXACTLY is a cavity"

Daddy: "you will need to get fillings in your teeth" (he shows Aiden his teeth and his fillings)

Aiden: "Oh that is so cool! I want Gold teeth though. All of them Gold."


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


On our last day in the hospital, our new nurse came in to do aiden's vital signs and his exam. She noticed his line, and she looked for his IV... she says, "Oh look you DO have a port.. ok"

she reaches for Aiden's chest, and begins to poke around.. immediatly he begins to yell:

"STOP! OWWWWWW YOU ARE HURTING ME!!!"

The nurse jumps back looking horrified, and says, "I am so sorry!!! Does it hurt when I touch it.."

Aiden never takes his eyes off his video game and replies,

"Naahhhhhh I was just messin' with you."


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



Today was a wonderful day!!!!! Oh my word! So in my deep depth of hermit-hood, we all decide it is time to leave the house even if it is for a little drive. Joey gets a bright idea to go to this little airplane park with the kids. I assume since Aiden has no energy, and can not tollerate any heat for longer than 3 minutes, him and I will sit in the car watching the planes.

Joey brings the little water mister and we give it a try. It is a hot hot day here... very hot. we get out of the car, and see the little planes landing. Mason is going crazy! He loves it so much, and Aiden is eyeing the playground. I think to myself, he can barely walk across a parking lot with out getting winded, but ok, we will try it. Joey and I drag all of our gatoraide and cooling stuff and we head to the park.

now wouldnt' you know.....


miracles do happen




he climbed to the top of the little air tower at least 4 times!

he even helped baby brother get up there!



almost there



I might be exagerating, but I swear, we were there for 45 minutes.. in the heat... and outside. This is a first for at least this entire summer.

I think JOEY AND I were more heat exhausted than aiden was!!



(him with our handy water mister)

I was like a crazy person, I would run my hand across his neck.. and it was cool. Not like fire burning hot, like normal. It was cool!! We would spray him down and he maintained a normal tempature! Normally the spray is NOT enough. He still overheats and actually rises his core body tempature.. which is very dangerous.

Today something was better. I don't know what on earth made today better, but he was amazing! He did have to rest after a few minutes, but the smile.. was unreal!!!!



can you believe it!

I don't know what medicine, or if the IV fluids made him better, but something has just improved. wahhhhooooooooooooo!!!

You know it was just a joyous day. Dear God, I just needed that. I needed that more than anyone will ever know. My husband, and myself are hanging on to every drop of good news, and man oh man that was what we had been craving.

I don't want to share anything yucky or scary or awful.. I am just gonna end on that one.

praise God for our smiling boy! And our smiling family.





LOVE
THE HAWK FAMILY!

---

Wednesday, August 20, 2008 8:28 PM CDT

HOME!!!! HOME!!!!!! HOME!!!!!!

we are home! I am now officially in family mode so if you have called or emailed or anything, please know I am getting back to you.. but first things first..

I am going to bed!

we love you! and thank you for the responces about the shirts! yay!

xoxoxox

off to sleep!

Lisa


previous update below

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




song request by Aiden... this song playing always makes me smile... Aiden always says, with a far away look in his eye

"Mommy how can Kermit and Ernie have the sound so much alike. Do you think they are related?"



SO as you guessed, we are still here in the hospital.. I think I am dreaming about somewhere over the rainbow, where all wishes come true .


We are watching him because of his blood pressure and heart rate. The new medicine is called clonidine. they are doing it as a patch on his skin. It should help control the peaks and valleys. It is specific for his adrenal gland and his catacholamine levels. (yes that was english I swear!)

basically it could drop his heart rate.. he could have a hypertensive episode, and all the above are very very bad with our little aiden. so.. to be safe we are here being monitored (tortured).

I wanna go home. Joey has an interview tomorrow. He is applying for a supervisor position with the state. Not a good time for this. I imagine my husband is sitting at home on the couch studying like mad. God bless him. We are having a hard time.. this has been hard. I think JOEY needs miracle mail.. LOL.

so pray for this job

I am soo tired. I can't even be funny. I am like nodding off. I need some sleep. This hospital chair is like a brick. and obviously they think my butt is 6 inches wide. and folks... it is NOT 6 inches wide.

In the meantime... I might as well spill the beans on our next fundraiser for Aiden's medical fund. We are doing t shirts! pink/cranberry , grey, blue/navy, and white/black

this is the design.. whatcha think.



then he created a banner.. although it won't look like this.. it will have his photos on it. He did that for free, to help at fundraisers. (you know all the free time we have right!)






anyway, we haven't made the order, because as usual it comes with an upfront cost. I thought we would get an idea of some people who might buy them. I know of course I have this vision of all of Aiden's little playmates all decked out in a group photo.I wish he could go to school, because I get misty thinking of him with a classroom of kids rooting him on. And yes today was the first day of school for all of his friends, it stings like acid in my heart that he can't go.

But besides kids, I know it will be my new fave shirt. And just like the cookbooks it will be whatever it is ment to be.. Maybe not the most profitable fundraiser, but I love this shirt.


Ok enough of that...I will update something more insightful and easy to read tomorrow... pray for him to do well tonight. Pray for healing.


Love Lisa

AND THANK YOU TO OUR SWEET FRIENDS AND NEIGHBORS WHO HAVE EITHER POPPED BY, BROUGHT ME A COFFEE, SIGNED THE GUESTBOOK, OR CALLED. I AM NOT IGNORING ANYONE.. JUST BEEN REALLY TIRED.

HUGS

---

Tuesday, August 19, 2008 12:05 AM CDT

4:30 update

PLEASE READ BELOW FIRST THEN READ THIS SECOND...

so ok we are NOT going home.. we met with Dr. Pearlman, after starting in 2005 I explained it all.. she was really great, but just concurred that yes this is definiatly autonomic dysfunction and that it is some primary form that we don't really understand. They said, they will NOT wait for the end of the month for the clonodine patch to go on.. they did it now. It can cause heart and blood pressure changes and so we are being monitored and given more fluid. This is all sort of unheard of... the very abnormal labs and vascular tone and leaking is just unheard of.

In anycase, I like her so much, and it is great to have Dr. Flores' partner also helping and on the case. We love his perfect hair and he is so smart.... this was all his idea orginally.

so, I of course felt like I was hit my a mack truck, but after moaning on the phone, we decided to insist someone from childlife comes in a gives the kid a coloring book. We have been decorating the room. If he is staying, it might as well look better.

Aiden feels great, he always does when he gets continual IV fluids. Who knows why.. but it does make him feel good. And hey isn't that ALL that really matters!


I Will probably update again later, cause hey this is total therapy. But the rest of the day we are just playing, coloring, and having his best friends visit.

Love to you

keep praying!!!

Love Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

so... here we are.. and with out officially knowing anything I have learned something.

Labs came back and yes with IV fluids his labs came down by 1 entire point for hemoglobin, and hematocrit by 2 His wbc count went from 22,000 to 9,000 all because of water.

so what this tells me is: even though we did plently of IV fluids to prevent this from occuring. It didn't. BUT it still treats it.

So this also tells me (all unofficially) that if the vessles are leaking fluid and then he is in a crisis that no matter what we do so far, if he brain says to do it.. it does it. The brain tells the vessles to be like a water hose and dump fluid out, to the tissue or his kidneys, and then we are "dehydrated."

Finally this tells me.. uhhh now what!

We have had GI come, Cardiolgy and now waiting for a new doctor, the head of nephrology to come by. I am super excited and still offering all new doctors the free steak dinner for a diagnosis. she may be the one! I will even throw in a life time supply of gratitude and slavery... for her to find our missing puzzle peice.

So after Dr. Pearlman sees us, then we will likely go home on IV fluids. Yay for that! Usually this wold be another day at the spa, but now we can do this at home.

Our GI has spent his evening looking at papers and research, and has come up with some more medicines he thinks theoretically might help. Hey theory is ok. even in failure we learn things and are closer. sure it stinks we still feel like we are so clueless, but we do have the umbrella diagnosis of autonomic failure.

We are getting a lot of people who are dealing with the specific symptoms which is a tad frusterating. We have a kidney doc for the fluctuation of blood pressures and adrenal gland. We have a cardiologist for the heart aryhtmias. We have a GI looking at the clyclic vommitting aspect. And so on and so on... It seems like we just are putting very ill fitting bandaids on each thing. Not to say or discredit anyone's effort! These doctors we have are furiously working on Aiden's behalf. Sitting with cheifs of divisions going over the daily moments with aiden, symptoms, testing.. just all like a round table discussion. The care and concern is there.. but Joey and I are feeling a tad tired, and a tad weakened by it all.

So, I spend my afternoon in the hospital and God has reminded me about the hopes of this journey. Jonathon, the leukemia patient.. now turned nurse in training comes by with his sister to say hello. We spend a long time, listening to his miracle. His amazing fight. I sit and imagine his mother, as he tells me from Aiden's perspective the pain he has endurred and the triumphs he has felt. He chokes up in tears several times, just so thankful that we were thankful of him. God bless that family. The fear his mom and dad must have felt during his long ICU month. And now look at him, and his sister, both working for the cause, here at the children's hospital. Thank you God for that gift you brought us today. Aiden was so excited to see him, he gave him a big hug.

More time goes by, and I am reminded again that the real reason we chose cincinnati is also our beacon of hope. I recieve and email a moment ago and I get this link..

www.caringbridge.org/sc/isaacsjournal

Dear Isaac, hands down the most complicated liver kid I have ever heard of. He has been through everything. so many times he fought through it all. Talk about being changed by steriods, and ports, and liver transplant, and then a bonemarrow transplant, then complications, then infections and bleeds, and the list goes on and on. I read his update and you now what.... that case that seemed so out of options, just attended his first day of 4th grade today. His first full day of school since kindergarten. All else spent fighting for his life... in cincinnati.

I am reminded through others suffering that there is hope in the hopeless and there is always options around the next corner. I am reminded that even if we feel the feelings of weakness and despair, it is just a moment in time, and we pick up those peices and move to the next battle.

I say a prayer for each of these two profound inspirations, and my gosh.... thank them for being part our lives.

I will update with photos with jonathon and of course with what Dr. pearlman has to say. We will have to go to cincinnati very soon. but it will be worth it...

Thank you for the notes and encourgment.. i was sitting there thinkg.. wow!!!

Oh wait.. the kidney doc is coming in a moment.. better run... pray!!!

Love Lisa

---

Monday, August 18, 2008 8:26 PM CDT

You know that friend that calls you and goes on and on and on about thier "awful" day and just never once even asks you how YOU are.... guess what.. today is MY day to be that friend.


Today was an AWFUL day.



Aiden and his girl best friend Hannah had a sleep over. Now before any of you get all excited that cause she is a girl.. let me just remind you they have been like brother and sister since they were 18 months old. They have their sleep over, and we are to have Hannah all day. We had plans to go play at friend's house wii and nintendos and barbies.... it was to be glorious. Except Aiden woke up.. I flushed his IV as I unhooked him from his IV FLUIDS (!) AND SAYS TO ME.. "MOMMY TODAY IS A BAD DAY.. I NEED TO GO TO THE HOSPITAL." I don't even believe him! I just feed him some cherrios and drink some coffee. I had no idea he was serious. Next thing I know he is serious. He is blinking, rolling eyes in head.. and vommitts. Not a lot of course, but I know what this is. I can't even beleive it. How can this be! We are running fluids on him! what is going on!

I never even wait anymore.. I know the pale, eyes rolling kid, is in a crisis.. I take his blood pressure it is so faint I can't see the little tick tick tick on the meter. I finally get 79/40 I pack kids, hannah, all into the car.. Aiden is almost unconscous, drop off kids at parents, and off to the hospital. Of course totally shocked, I forget to bring his puke bucket.. and he is now puking all over the back of my car. I am driving down 9th street.. only blocks from my house and blocks from the hospital and I excellerate. It feels like there is someone holding my car down. I am thinking, why isn't it going! Aiden moaning. I hear and feel an incrediable thump thump thump.. and realize.. I just blew a tire! Brand new tires! BLOWN!

Is this real! I pull into a store parking lot, I drag my now 61 pound child out of the car, with throw-up on him, and think, that looks like blood. Ok denial! denial!!! We leave car, with shredded tire, and bloody puke and now are off on the second leg of the race in my dad's car. We arrive in the Er and not too soon.. he was so sick. After getting him in.. we are all up on the plan.. they all know him now. They are so amazing.

He is vommitting and there are specs of blood. It keeps happening, now it is steaks of blood.. now it is just blood and spit. The ER doc is in the room. our nurse is in there helping me while he is comitting, and I say, "maybe it is ... umm... uhh pepsi"... (desperatly trying to find the denial place... it can't be blood.)

"No that is blood! don't even have to test it! that is blood." says the ER doc.

so then.. like Scarlett O'HARA... I sees black fuzzies, feel really ice cold, and then whoosh... I am almost on the ground. Next thing I know, I am sitting there with the ER doc holding my wrist, checking MY pulse, and Yolanda our nurse, getting me wash cloths and drinks asap! Uhh no. My southern belle just came out me, and I sitting with my head between my knees. Dr. McDreamy (ok there I said it.. he is!) says that he normally doesn't do adult patients, but said, DON'T MOVE! DRINK!

In my drama, my super mom cape comes off and they outer strong person, is now shaking, cold sweats, and just chanting inside myself.. it isn't varicies.. it isn't varicies. I can't ever live that again. I don't even like to think about it.. nonethe less see blood again in his vommit.

The zofran was running..Aiden was finally out. His Labs come back and they are just awful. I can't believe this. How can this be! We have run over 4500 cc's of IV fluids on him not to mention the gallon a day orally, and he is hemoconcentrated! what is wrong with him! We had hoped do much for him this would be his answer.. how can it be that we have nothing from this. What is wrong with his body! It is just not working. at all.

After spending over 1 1/2 hours talking to incrediably intellegent doctors, and literally brainstorming together, we come up with not much. It is so hard. SO COMPLICATED. We know what hs is doing is probably one in a billion. No one has ever seen this. Not one person. They don't even know why. We just know he is not working. I keep thinking, fluid to your organs, seems pretty important. If we give him thousands and thousands of ml's of iv fluids in his actual vessles.. how is it possible he is dehydrated. And not one person knew today. Lots of heads shaking.. but lots of caring and concerned doctors. No one is giving up. We just are regrouping.

So after a long while, he wakes. He is now talking. No more vommiting, no more blood. We know the drill.. once he is stable, (less criticle numbers) then we go home. IN the mean time, we get to have come excellent consults... so we will see.

so did I mention I am sitting here counting down the hours to be hit by a hurricane! Yup. Of course I can't soley claim that as my personal disaster, but selfishly I feel like it is, since I am wimpy and don't like storms and don't have my husband to cuddle and hold me. I am sitting in a hospital... not fun. safe.. but not fun.

Today sucked. I am sad, but can't even explore how terrible this is that the fluids failed. We are almost out of options.... so we better start thinking of some new options. I won't continue because this is too hard to even talk about. But family, grandparents, sweet friends who read this.. please remember the jokes, the laughter aiden's amazing spirit... and don't get scared. I am his mom, and a mom has instincts.. we are gonna fix this. I just know it. I know we are gonna have a victory! I just know it.

My hope is in cincinnati, but my faith is in God. We will get this figured out.

please pray. I will update again. I am blurry eyed from tears, and blurry eyed from lack of sleep because of the giggling from Aiden's sleep over last night. I re read this update and it makes little sense. It sounds so choppy, but I am exhausted. I need to sleep. so on that note I am off to cuddle Aiden and hopefully get some sleep... love to you

Lisa

---

Monday, August 18, 2008 10:09 AM CDT

Hello, all - Lisa's friend, Laurie here. I just got off the phone with Lisa. Aiden is in need of some serious prayers! They are in the ER right now; Aiden is "doing his thing" (Lisa's words) but he's added something new: he's vomiting blood. His blood is so hemoconcentrated that it has no where to go but OUT. Lisa described his veins like this: garden hoses with holes. His white blood cell and red blood cell counts are through the roof.

It seems the IV fluids Aiden has been receiving at home aren't working - or haven't STARTED working yet. I hope all that needs to be done is some "tweaking" of the therapy.

Lisa feels that they'll be heading back to Cincinnati soon to have them evaluate what's going on.

They will see their usual repertoire of doctors today. Lisa is hoping Hematology will come see Aiden, too.

Please keep Lisa, Joey, Aiden and Mason in your prayers. They have yet another hurdle to jump, and we need to help them over it.

---

Saturday, August 16, 2008 2:47 PM CDT

So today we went back to the ER and had Big Head Ed re-access Aiden's port. It is amazing what a caring and confident nurse can do for a child who is terrified. Aiden did great!!! Yes he struggled at the last moment, but there was really no coaxing during the dressing change, and Ed remembered every detail about Aiden's little likes and dislikes. It was pretty remarkable. Aiden did do that last minute struggle but it was so quick and so weak that I even had a tiny chuckle because of the little thing he was doing with his head. Now we have been giggling about it all day. I was holding Aiden's hand and Aiden didnt' want him to put the needle in, so he had no way to kind of push Big Head Ed away.. so he kept trying to jutt his jaw out and hit him with his chin. It was just so quick, it was actually funny. Aiden didn't even cry. He just kind of gave this half yell and scream, but you could tell, he just wasn't that scared.

YAY!!! All Children's ER has been so kind to us to let us come in and do this. They just know that sometimes the conventional way of doing things doesn't always equal the way that works for children. God bless them for it too, because instead of Aiden's taking 3 months to get used to this, I am betting you that next week he will be again `100 percent better.

Phew!

Aiden had a joke he made up all by himself and he wanted to tell Ed so bad. So when I suggested he tell the other nurse in the room, Aiden clammed up. He said he was shy. shy? Uh huh. Ok whatever. So after a little cajoling, and then finally the other nurse leaving, Aiden blurted out the joke he made up.

"what do you get when you mix a bird and a cake."

a BIRD-DAY CAKE!!!

can you imagine being Aiden, coming to a hospital, getting your port cleaned, and tape taken off, and then cleaned again and then a new needle put in...

after all of that... then end it telling jokes?!

Children are so amazing. They are so resiliant. I just am so inspired by Aiden. No matter what, he finds a way to pull through the next thing. I think he is rubbing off on me and Joey. Just lately I feel like we are doing so good. Like it is all ok. Everything is just the way it is ment to be. Sounds weird, but I feel compelled to take yet another page from my 6 year old.


Do you know what we got in the mail today? A card. It had a big puppy on the front that looked just like Rolex. It said, "It is not fair." on the front. and on the inside it said, "Good people should not have to feel bad." It was signed by Aiden's entire pediatrician's office. Each wonderful nurse (angels) wrote something so sweet. I read each thing and Aiden said, "They sent me a letter!!!!?" The doctors signed it, but when I read what his main pediatrician wrote, it made me cry. Just did, I can't help it. It said, "thank you for letting me be your doctor". How do I say,

THANK YOU FOR SAVING HIS LIFE! Thank you for caring like you do. Thank you fo fighting for him, for worrying for him. Thank you for pushing from the day he was 5 days old.





Today was a good day, in the grand scheme of things. I am not saying I am happy last week happened the way it did, but I will say that I am happy to have last week to move forward from. A little crying in the ER, then off to tell jokes you made up.. That is a good day.

anyway, Just wanted to share... Things are better. We love love love the puppy. He is really good. Nothing too destroyed yet. Just a little pee on some tile. Rolex loves him, I kind of forgot how good Biscuit would be for him. He plays and runs with him, wagging his tail. Oh so cute!

As far as medically, Aiden is doing good. We just sat and waited the steriods out... with his new poop symptoms and heck wouldn't you know it has improved again. I am thinking as it weans it sort of mini-flares the GI tract, but then it settles back down. We were given the ok to drop it again when it looks better, but I am waiting till next week to make sure the diahrea is slowing down. He has had high blood pressure but that is probably the weight gain. I will just be honest, we weren't checking it that often because it was so hit or miss. But now we check is very frequently. So each day, twice a day, it is always elevated. Gosh I would be too if I gained 1/3 of my body weight in a matter of just 2 months.

What has improved tremendously is his energy! And his mood. I was hoping to see a drop in his weight this week, but we will just be patient. We are feeding him healthy food, and he honestly isn't that hungry at all lately, but still the weight has clung on. It will go away, but until then... it just confirms that he is a G rated version of Chris Farley.

Thank you for checking up on Aiden! Hope you have a wonderful week. Many love and hugs and of course puppy kisses to you.

The Hawk Family

---

Tuesday, August 12, 2008 3:01 PM CDT

Biscuit is home! He is wonderful!

We picked him up and this is the first photo of Aiden and Biscuit at the store.



We had a suprise waiting for us, it seems an someone paid the rest of Biscuit's balance. What a gift that was! It was done anonymously. I couldn't believe it. Although there was really only one person who knew where we got him.. so, you know who you are.. thank you. Thank you so much. Aiden is so happy. That is a gift worth millions.


before we brought him home, we took him to our vet just to purchase and extra dewormer. we just can't be too sure that he doesn't have any parasites, that would not be good with Aiden. He is very healthy, the vet said, he looked wonderful, and that the seller must really know what she is doing. I would have to agree! They had beautiful dogs, were so kind to us, and very professional. I wanted ALL the puppies. So anyway, here is Aiden at the vet clinic. It was his job to help with everything. Wow that therapy this already is! "Don't be afraid, they won't hurt you, well they might but it is for your own good."




We brought him home after that and we have had so much fun. Aiden just keeps repeating, "I love him".. He is smiling all the time. I just can't get over it! He told me, "I feel like a daddy.. like a real grown up and he is my baby.".

Rolex was of course perfectly behaved, rolled over on his back, opened his mouth and fake chewed with the puppy. Seriously, that dog is amazing. AND COME ON! ARE THEY TWINS OR WHAT!










We are having so much fun. Aiden just walked past me, picked him up and carried him like a lump into his bedroom to lay down and watch tv together. It is so cute.

in other news, the less important medical stuff... Aiden has been having his GI issues again. We dropped him on his prednisone some more, and we are seeing some issues. I am waiting this out a little to see what happens. I honestly don't have the energy to even try to worry about this too. Aiden is doing very well with his IV'S! he has not complained about it once. He says he looks forward to seeing his nurse friend on Saturday. I think that is remarkable. We will see what happens.

A lot of people don't really understand it looks like, I realized that I didn't explain it well, so I thought I would just explain it. Basically there is an UNDER THE SKIN port. Like a little disc under the skin. Once a week we have to poke it with a one inch needle. That needle stays in him all week, and is attached to an exterior line. On Saturday we go back to the ER have them change it out again. That means... take this needle/ line out. CLEAN the area, and then re-poke him with another needle. This will continue for 1 month. I run the fluids every single night, once he has fallen asleep.

So that is the deal..

Things are looking up again, I am happy abou that! I am exhausted and just trying to forget the past week. I am counting the days down until 1 month when we hopefully have a new plan.

Thank you for the prayers, and all the well wishes. You can't know how many times I came here read your words and just felt lifted. Joey reads every day at work, and he says, "I don't want to look now.. It is my treat I get to do at work..." thank you. we just want you to know it means a lot.

I will update soon.

Lisa

---

Sunday, August 10, 2008 9:32 AM CDT

This song is dedicated to Aiden and Biscuit!!! COME MONDAY IT WILL BE ALRIGHT.



Mason is wearing his big boy undies and now thinks that he is a big enough boy to yell at Aiden.... I listened to their fight, wanted to jump in, but thought to myself.. today is a new day. Life goes on... Thank God. I guess everyone is feeling better enough to run off crying about video games. It is a lot better than running off and crying about Mr. PORT a Potty.

Today Joey and I do the whole pump by ourselves and then on our own for the rest of the week. I am proud of us. When we said our vows, I missed this stuff in the fine print.

I have had some emails about sending happy mail to aiden.. he actually does have an old PO BOX set up from Make a Child Smile. The rules changed with MACS and they are *requiring* the families post their stuff on their personal websites. If you don't then your child is deactivated. SO for that reason I am posting this. It is not a plea for cards for Aiden, I have never done that because it feels weird to have it out there like that. BUT that monthly letter or two he gets still makes him smile so we still have the box.

so here it is...

Aiden Hawk
P.O. Box 7505
St. Petersburg, FL
33734 - U.S.A.

aiden was featured in Jan of 2006 here is a link to that page...

http://www.makeachildsmile.org/2006/prev_2006_jan1.shtml

If you have never heard of MACS before and you have a heart for these amazing children, check it out.. they will grab your heart. It is a great org where cards are sent and mailed to your child for that month. Some volunteers still send out little notes or stickers every once in a great while, and for that I have kept it open. He loves to check his mail.

so that is that... the boys are sassy, I am exhausted. and Joey is fervently cleaning, as he always does when he is stressed.

biscuit is here tomorrow.

And as I type this, Mason is in my lap, aiden is on the arm of my chair and we are laughing because Mason just said, "I am gonna give you a whoopin'"

slowly back to normal... now wait... slowly accepting our new normal

Love Lisa

---

Saturday, August 9, 2008 7:04 AM CDT

Just because it is all so hard, I HAD to update with some better news!!!

Aiden has named his port (with the bad influence of his auntie)

"Mr. PORT-a Potty"

PORTY for short

And glory to God, his blood pressure has already dropped some, and within 2 hours, his headache was totally gone.

I am in tears! It will all be worth it, if this works.

still believing!
Lisa


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

sat. afternoon update


UPDATE he is now sitting playing his nintendo ds THE CARS'S movie one. It is done ... we will be going to the hospital to access it for the next few satudays, because it is what he wants. sad but the hospital makes him feel safe. He thinks he is going to die. He says he knows he is. He fought so hard today at the hospital that he litterally fell off the stretcher. I sprained my thumb holding him down, it is swollen and I can't type well.

It is in... and now it will be ok. hmoe nurse came, the fluids are running. Tomorrow we will run it while he sleeps, but today he is not feeling well, he has a headache, and his blood pressure is through the roof. They said they will have valium for the next few times we have to access it. I think I will take one myself.

anyway, all is ok now... it will all be worth it when we see him running around outside in the middle of the heat, sweating acting normal. It will all be worth it when we see all of this nightmare calm down. Or minimally stop in its progression.

Thank you for the prayers: The Nurse in the ER is our old buddies. "Big head Ed" and then all of our favorites came in to check on him. NONE of them knew he was swollen from the prednisone, I saw their eyes one by one.. each shocked. Ed said he works every saturday, and since he is a hem/onc nurse he does all the ports.

We had one other blessing, Jonathon was aiden's tech. Jonathon is probably 20 years old. He had leukemia when he was 16. He came to sit with aiden and talk to him all about it. He told him he loved his port, and that aiden will too one day. aiden looked up to him like a hero. Aiden litterally said, "you are strong like my daddy." Jonathon said, I want to be a nurse so bad so I can help other little kids. Aiden thought that was so cool.

You know, you all know I am a person of faith. It has nothing what so ever to do with religion. It has nothing to do with rules and what society thinks religious people should be like or are. It is just about personal faith to me. Faith in something greater, that yes, I don't understand. People think when we pray we are supposed to just get what we want. For ME, I have learned sometimes we have to look for the answered prayer. aiden may not be better, he may not be cured, he may not have painfree days, but... he is loved. God sends us 'big head Ed's" for his nurse, and God healed Jonathon so he could be help others, and remind us that He is still in the buisiness of miracles.

forever faithful in His plan
Lisa
Team mom of
"team aiden"


UPDATE FROM EARLIER TODAY:


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

cheryl... if you are reading this.. this would be one I would tell you to stop reading.


It didn't happen. No IV fluids last night.



IT was the worst experience I have ever endured emotionally with aiden. The fluids didn't happen. He fought and screamed and spit and really went into a full panic. Like nothing I have ever seen. They tried to access the port with all the fighting and with how heavy he is from the steriods it was impossible. It wasn't him being a bad boy... it was terror.

Last night all four of us cried ourselves to sleep. We totally messed up... we had NO idea this would happen like this, poor Mason he was there for all of it. Joey took him out of the house to get away from the screams, I could see Mason's hands over his ears crying to not hurt aiden. aiden said the saddest things that.... I just can't share because I think it should be private. Basically though, the theme was "I never asked to be sick" "nothing makes me better" I have never really just broke down in front of him, but I couldn't help it... hearing him, hurt me so badly. He said he was being tortured and was helpless. Just awful.

so this morning, we are now on our way to the hospital... sit in the ER see if they can help us get it done. I am calling asap my pedi this morning to see if they will call in some valium for him. This is just too much. Everything has happened over the past 3 years it has traumatized him.

I hope to give you a new update later this afternoon.


I am asking for prayers.. like big prayers. PLEASE PLEASE PRAY THAT HE IS CALM. AT PEACE. PLEASE PRAY THAT HE TRUSTS US THAT PANICING MAKES IT WORSE. PLEASE PRAY THAT HE KNOWS THIS WILL HELP HIM.

Thank you
Lisa

---

Thursday, August 7, 2008 9:25 PM CDT

Things change in just one moment don't they? So Yesterday we went to Aiden's nephrologist. He is the one who will be guiding Aiden's care locally regarding the dysautonomia. (adding meds, changing fluids etc) So... we meet with him, and ask him basically for his opinion on the amount of fluids and the frequency of fluids for Aiden. We talk about it all... and this is what we got.

So...

He felt, along with cincinnati, that Aiden needed to be on nightly IV fluids. They all feel that because he is so hemo-concentrated (his blood is so concentrated, it is like icetea with almost no water and all tea), that he is at HIGH risk for damaging his heart or other organs. We also know that because he is unable to retain fluids in his vessles properly, that he is also at a higher risk for a clot or stroke. This is everyday of his life.. during an episode or "crisis" he risk is just so mych greater, I can't even allow myself to think about it.

So I don't.

The awful rotten terrible disease has now made it a neccesity for him to have to get IV fluids everyday.

I am gonna just go out on a limb and answer some FAQ.

1) Question: WHY don't you just give the kid something to drink!

Answer: WELL DUH! WE DO!!! It just won't work! His autonomic nervous system is failing his brain is telling his body to dump the fluid. So we give him 1 gallon of gatoraide everyday, and his kidneys almost seem to have a hole in them. Just letting it get peed out.

2) Question: Why does an IV help?

Answer: By placing the fluids directly in to his vessles, it will allow Aiden to have a normal blood volume. His blood volume is so concentrated that he it is very very dangerous for him.

3) Question: Won't he just pee that out too?

Answer: Yep! So we do it again the next night. And again the next. And again the next.....

4) Question: (one of my favorites!) Won't he get really puffy from all the water?

Answer: No. Infact it is the oppisite. He will have (even if it is from an IV) more normal blood volume, so his body won't be desperatly dumping the fluid, and then holding on to the fluid. Our goal is to hopefully make him more normal.

5) Question: If you have to do this everynight, will you 'unplug' the IV everyday? Will he swim?

Answer: NO. Now since we have made it soo frequent we will try to not de-access him very much at all. minimal risk for infection. Swim is up for discussion in a few weeks.

6). Question: Will this work?

Answer: I don't know. No one knows. We dont know. BUT I have a good feeling it may.

7) Question: Why is Dr. Flores have the most perfect hair?! And how does it never move!

Answer: It is life's greatest mystery.

~~~~~~~~~~~~~~~

Ok.. so seriously, I was sad but happy to hear him say they wanted to do it every night. Sad because HELLOOOOOO THAT TOTALLY SUCKS! But Happy that they are ALL agreeing that they might now what will give him the longest and best quality of life. I love to hear them agree. I am like addicted to it. I must have asked Dr. (perfect hair) Flores, "So you agree with Cinci?" YES. "Ok so.. you agree then?" YES.

It is a strange phenominon! But it can happen!

Anyway, SO That was yesterday. OK...Alright, BUT TODAY!! HOLY Cow! I call our Pedi office and tell them the scoop. We all agree about the plan..(that magic word again)... I slip into denial, and I go on with my glorious day with Aiden and his friends.

Later, the phone rings. It is my wonderful amazing coordinator at the pedi's office, (we love you melissa!) She says she has spoken to homehealth care... And in the next moment, I had two toddlers in a murderous fight over a bouncy ball, screaming in my ear, while my other ear is hearing, "They are coming TONIGHT to do access the port and do IV fluids".

STOP! WHAT DID YOU SAY!!????

Whoa.. did you say, TONIGHT!? I have not even told him! I haven't warned him! He won't even let anyone see the incision! No.. no nooooo... I am totally freaked and think, "But I wanted to give him Biscuit when we started!" NO!

I mean c'mon this is denial here folks! Who cares if the kid got the port, who cares that he has had three doctors write the orders for the nightly fluids.. I am STILL SHOCKED When they say it is time!

So, now I have to have a new plan. I need to tell Aiden right NOW about Biscuit. I can't wait. He must know. I wait till Aiden's friends go home, and I sit him down.

"Aiden, remember when mommy told you that they would do IV's in your port? Well guess what? they are coming tonight. It won't hurt, and you will be asleep while your pump runs. No biggies, just like we talked about."

Aiden looks at me, and grabs his chest. He says, simply.

"NO!"

"Aiden I also have more news. You remember how we had talked about finding a baby Rolex, and you wanted to name him Biscuit?"

Aiden's eyes widen... he is furiously nodding his head.

"Well Daddy is coming home, and after we take Rolex to the vet, we are gonna see if this place has a Biscuit."

Aiden jumps up and down, he is all smiles. It is all ok. Phew!

So, I get on the phone, we start to coordinate home health, and then the most amazing thing happens. Aiden's old home nurse Carol is STILL working at Baycare! This is an answer to prayer! I am so excited. So she calls us, and she says, "I am coming tonight" And I say, "PLEASE CAROL... PLEASE give us one more day. Can we start tomorrow??"

So, with that. She said yes. Aiden will start tomorrow.

Thank God. It was just crazy. I felt like things were going too fast! I didn't want to have it happen like that for Aiden so Joey and I just were so thankful they said it was ok to wait one more day. Now we could take Aiden to go see his new puppy.

I called ahead to the place with the puppy, and they had Biscuit all cleaned and bathed. he was in the front of the store and in a little cage all by himself. He was running in circles and chasing his tail. Aiden walked in and ran over to him... He stuck his fingers in the little cage and said, "LOOK!!! A BABY ROLEX!!!!"

Joey and I turned to Aiden and said, "THAT IS HIM! THAT IS BISCUIT! HE IS YOURS!!!"

You could see Aiden was so excited and stunned and just in love all in one moment. It was so special. I gasped and held back big fat crocidile tears. It was better than I had hoped. Aiden held and cuddled and hugged and talked to Biscuit. We got so many pictures and immediatly I printed a few so he could have them. We had to leave the little sweetie because he isn't old enough to come home yet. But let me tell you something.

Tonight Aiden has only one thought in his head... and I promise you it has nothing to do with pumps, IV poles, lines, and being sick... it has only to do with this:



Aiden and his new puppy.



Aiden already has Biscuit 'N Gravy Hawk's Photo framed by his bed. He fell asleep holding the photo of him.

I actually have myself my own little photo to look at an hold. It is one of Aiden with the biggest smile on his face.

It is gonna be ok.

We will get through this like we always do. A little silliness, some puppy breath (joey), and lots of faith.

1 day till IV fluids
4 days till that sweet puppy is home with us.

Faithfully,
Lisa


Ps/ in case you missed it, the bad news was on paragraph two.

---

Saturday, August 2, 2008 1:18 PM CDT

Just finished reading a book. You know where that leads! Uh oh warning..deep thoughts ahead.

It had incredible gems in the book, especially for moms of children who have chronic illness.

One part of the book just spoke for what I feel ... gave me a voice on something that has been bothering me. (As a background little Hannah is diagnosed with a rare cancer, and has been in and out of the hospital for months. In the hospital she has her "way" of doing things...)

Hannah's Gift:

"Nope it's not right," she said, handing it back to me.

I couldn't believe it. I had been doing it at her request, the same way for days; apple juice in the red cup, milk in the green, Pepsi in the yellow, and water in the blue.

"It's not right," she repeated, looking evenly at me.

"Which one isn't right?" I asked.

"All of them," she said.

I wanted to throw the whole lot against the wall. I breathed slowly and counted to ten. Usually, it was my greatest joy to let Hannah decide what beverage she wanted in each cup. While some people seemed concerned I might be spoiling her, I didn't agree. I saw it as a way to preserve some sense of Hannah's dignity. So many things were literally being forced down her throat, she needed to have control over something.


~~~~~~~~~~~~~~

Recently the hour before Aiden's surgery, (you know the one I said went off without a hitch?) This is what 'off without a hitch' REALLY looks like.

Aiden was getting an IV placed. He hates the freezy spray. Hates it. He thinks it is too cold and says it burns. He wanted the EMLA cream. (numbing cream) I told his nurse to give him EMLA and she said, "It would take too long"... I then mouthed to her, "JUST DO IT. It is what he wants!" She looked confused, and said out loud, "But it won't numb the area.". finally Joey said, "It is part of his routine. It is mostly a mind thing." I guess she didn't really care because the IV team came in with the freezy spray. I told the IV team.. "Use the Left AC. It is his only good vein for IV." She immediately ignores me and looks at his hands.

Aiden screams and screams... "NO HANDS!!" The IV nurse ignored me, ignored HIM, and says, "Hunny I don't want to have to stick you twice. Let me look." Aiden pulls back his arms flailing and screaming. He points to his left AC and says, "HERE IS MY ONLY GOOD VEIN!" Joey and I are standing by. I can't watch him fight this fight alone..finally I Stand up.. I grab his arm, and show the nurse. She claims she can't see it. I then say, "It is as big as a straw! I can hit it with my eyes closed! Just feel for the scar tissue." Still she says it doesn't matter how well *I* can see it.. if she can't see it, it is no good.

Aiden screams and bucks on the bed, I am now looking at the other nurse and say to her.. It is RIGHT THERE! Reluctantly they go back to his left arm and she sees what I mean. Aiden seems relieved but asks for his EMLA cream. Already they IV nurse is annoyed. "The freezy spray will be fine. The EMLA won't work it takes too long." Aiden is turning bright red and is now being held by 4 adults. He is kicking and and screaming, choking on his tears. The IV Nurse says, "DAD! Get over here and hold his hand he is trying to get the needle from my hand" Joey runs to the other side of the bed and holds Aiden's hand still while he screams and cries.

He wants his cream. He wants the tourniquet ON the shirt NOT on his skin. He wants you to use a certain tape. DO NOT put it on his skin. He is screaming his demands, and I just keep chanting.. "Aiden it is your last IV for a long time. It is almost over baby. It is almost over."

When it is all said and done.. the less the stelar nurse feels so victorious she has made it through all of this. (poor her right?) She placed the IV in the huge fat vein that I told her to, and she taped him all up incorrectly. After all of that, she says something like, "WOW he is a strong one." I look at Joey and I say, "Thank God he has this fight in him. I am so proud of him for not giving up his fight."

What should I do? What would have been what that nurse was thinking I should do? Should I yell at Aiden to lay still? Should I tell him to not boss the adults around? Should I tell him, to take it? Would I just take it? What does it feel like to be a small child being held by 4 adults? What does it feel like when screaming and begging to stop NEVER ever works? Does it feel like those terrible nightmares I have where I can't scream? Where I can't run?

SO I buy him a puppy. We take what little money we don't have. What little tiny money we should be using for other things and buy a puppy. DO you think Aiden is spoiled? Do people really think the little boy who lays screaming while held down is spoiled? I don't care. I really don't care.

Life isn't fair. It isn't equal for him. It isn't. It isn't the same for him as other children. It never will be. He will never get it back. If this all stopped now and he was perfect forever, this will have been more in one lifetime than most of us ever had.

To Joey and I, a puppy isn't spoiling him...I call it a little piece of dignity.


Last night I finished my new book in the quiet of my bedroom. When done, I went to the living room where everyone was settling down for bedtime. Aiden and Mason and Rolex and I crawled under a blanket/fort with a big bowl of popcorn. I could hear Joey in the kitchen doing the dishes. Mason had his chapstick in one hand, and his Barbie watch on the other while Aiden had popcorn falling from his mouth cause the laughs were just too big to keep it in. We sat under that blanket telling secrets and talking about silly things.

I remember the days when I used to judge other parents who let their kids crawl into their beds. I had this one friend around the time of transplant that HAD to lay down with her child to get him to sleep. I used to think, wow.. just tuck him in, kiss him on his head and say night night. He is just spoiled.

Now today, I am a different woman. A different mother. I think of the term spoiled and I feel the dichotomy of the term. Love and spoilage. I don't understand the fuzzy lines of the word. My little boys falling asleep in my bed, is that spoilage or love? Is me playing the claw game at Walmart, till I win that ugly toy, spoilage or love? Is all the attention we give our children day after day or night after night, spoilage or love? Why so many rules and opinions on parenting? Why does it matter?

Last night after all the silliness was done, the popcorn and chapstick under the Spongebob blanket. Joey and I tucked the boys into bed. We tickled their hair and rubbed their backs. We waited till they were asleep before we left the room. It is just love. A little piece of dignity that Joey and I got to take back when they told us that they weren't healthy.

A puppy. A little puppy, that YES costs a little money, a piece of dignity for a little boy that gets his dignity taken from him every morning and night he has to stop playing to take 14 medicines.

I am thankful for other moms putting thier feelings onto print in a book. I am horrified that the little Hannah in the book died tragically before she could ever turn 4. More horrified that it was a true story. I know that I am not a famous author, nor do I have all the answers. But if there is a Mom new to this, and she is feeling guilty because she rocks her baby a little longer than the books say to do. Or she wants to get a puppy for her child when so many people say, "But life is so hectic for you! Don't do it!" I say, do it. It isn't spoilage young Lisa. It isn't breaking rules. Rules don't apply anymore. The rules were thrown out when they told us our babies could die.

Yes, I know, look what you all stumbled into here. It is another update full of deep thoughts. That is why you love coming here. You get to see the cavernous hole of my mind at work. (echo echooo echoooooooo) But this is how it is sometimes. Sometimes when things are good like now,(and Aiden is good!) I get to reflect. I get to think about all that has been occurring. And now I have only one feeling...

I can't wait ... one more week till 'Biscuit N'Gravy Hawk' comes in to chew IV lines, make messes, and bring more laughter into our home! I just can't wait!

I promise photos to come!

Taking a break from reading books,
Lisa


"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30

---

Tuesday, July 29, 2008 2:33 PM CDT

Update to my update:

Bandage is off! and hunching over has ceased! He is doing very good! YAY

~~~~~~~~~~~~~~~~~~~~~~~~

Update

Just wanted to let you all know we are good! Aiden is still recovering. It was more painful that I think we/he anticipated. Then there is the other aspect of how he guards an IV site. When he is in the hospital just holds his arm straight in the air so no one touches it or disturbs it. Well that is kind of what he is doing but um, with his chest. So it is like walking with a 90 year old. Very very slowly. Almost with a limp. I keep telling him, "Aiden you can be normal.. just don't do any flips on the couch." ANd he just slowly creeps along, hunched over.

I am assuming this is going to stop eventually. Maybe tomorrow when the bandage comes off. Then he can get a real bath!

Ok so I don't know if his medicine has a side effect of changing his hair color, but the weirdest thing has happened. I gave him a hair cut on Sunday, and his hair is not white anymore! It is so strange. it is this ash blonde color. Joey and I were looking at it last night and it is so strange to see it like this. I mean the top is blonde, but the back is like ashy greyish. Maybe it is dirt! I mean I wouldn't be suprised! Or maybe it is just his hair changing. I mean he isn't going to be a toe head forever... whatever... just weird.

Thank you guys for the prayers and support! I can't thank you enough. It is such an endurance marathon, all of this. But when we are out of breath and just ready to give up (ok yes... I wouldn't know what this actually feels like) you all are like the people on the sidelines giving us that drink of water.

Now that I think about it... are those people who give the drinks of water just random people? Or is that part of some water team? What is that all about anyway? Like how do you get to be on the 'water team'? DO you apply for the job? "I make the best cup of water."

Anyway, you get the point. I just appreciate you. Sometimes I don't have the energy to talk on the phone and just go over it again and again, so that is why this site has been a Godsend. I get it out here... and then get to move on elsewhere.

So since things are so calm, there are a bunch of little updates I have been wanting to share but drama creeps in and I never get the oppertunity. SO I guess now will be a good time.

A few months ago when we were coming back from a trip to the hospital and we got to have lunch with a very special woman. Back when Aiden was a baby, and desperatly waiting for a liver transplant, a large group of people volunteered to be tested for living donor. It seemed like everyone just overlooked their own risks and asked to be the one to help save Aiden. It was amazing. There was this one lady though.. someone I had never met before, and she was just determined. It is our sweet angel Sara. You all know the story... (ok if you don't go to the journal history and pick any December 21st update and I retell it every year) Anyway, Sara was an online horsey friend. (COTH auntie) Aiden's transplant coordinator would tell us, Uhh Sara calls us all the time, saying she is THE match.. I would smile thinking how sweet that was. Well after eliminating me (blood incompatible) doing all the testing on Joey, then Alan (joey's brother), Jennifer (my oldest friend), and then getting ready to move to my brother.. they knew Aiden was getting very very sick and we had just no time to waste. They called Sara. (tiny little thing.. perfect size, age and just super healthy) God bless her! She came and as the story is told, she was Aiden's perfect match! It was the most sureal test of faith I have ever seen. That same night she was found to be Aiden's match... Aiden recieved THE CALL for a deceased organ. Two angels in one day.

To this day, Sara is just our special friend, but if you can believe it, Aiden and Sara hadn't seen each other since that crazy December of 2002.

Well two months ago, we changed that.

For Aiden it was like meeting a real angel. I guess since we call Sara, "our angel" he really thought she was an angel. (we still do!)

We met a a chick fil A and the boys played in the play area, and we caught up on things. Aiden just stared at her, and hugged her. And when we had to part ways, Aiden cried his heart out. You could tell ... there was just some type of wisdome for what she was willing to do. He just knew, that she was willing to have that same scar he has, and that just meant a lot to him.

I had wanted to share that special moment, but I didn't ever realy get a chance because things were so crazy around here.

Another little thing which seems like a brag, but really is just such an honor! I was asked to be on the All Children's Hospital, Parent Family Advisory Council. This means... I get to meet with other parents who are the board, as well as certian administration, nursing, etc..at the hospital. I am so excited, I just can't even wait. Our very first meeting will be on August 19th. AND... get this! They are providing dinner! (yes.. FREE dinner in the hospital cafeteria! haha) I keep imagining this meeting. I looked at the adgenda and the letter was signed by the CEO of the hospital. It stated that one of the VP's would be there, and of course some other leaders in the hospital. I just feel like that kid who runs to sit in the front row. The best seat near the teacher. I can't wait!

WHY you ask? WHy are you so excited?? Hey!! I get to be a real live grown up! With other real live grown ups! We get to talk and discuss real live grown up issues! I know... I know... I am sure I will use terms like "potty" and "Boo boo" but hey it is a children's hospital they will understand. I on the other hand am picking out the outfit, shoes and matching bag. I am READY! Lets talk some hospital! And make this place even better for families who have to use their services. So not really bragging on myself, but more excitedly sharing! And I am honored.

In other news... Joey has now started a new "joey-ism".

TO SAVE GAS and money... Joey has topped it all with this new trick. Seriously. So we are driving home yesterday with all of us in the van. Then about 1 block from our house.. Joey just turns the key on the van and throws it into nuetral. Like TURNS MY CAR OFF WHILE WE ARE DRIVING!!!!! Aiden and Mason burst out laughing, and I am just staring at my crazy husband thinking.. I MARRIED THIS!!! We slowly GLIDE into our front yard.. and Joey has this big grin on his face. He looks at me and says, "I think we saved at least a third of a cent."

Yes.. I am married to the most "frugal" (using this kindly) man alive. I guess he thinks if I do this every time I drive, then in a month we might make 10 cents. DOn't mind that the power steering goes out.. but whatever. It's joey.

Have a good week... I promise pictures will be coming asap.

XOXOXO
Lisa

---

Friday, July 25, 2008 12:56 AM CDT

ALL IS WELL!!!

Aiden did so well that we are actually HOME!

The anesthesiologist was amazing. The decided to do one last IV in his arm before hand... and he explained the reasons why. (scary stuff I don't like to repeat) I thought it was a bitter sweet good bye to that tired out ole vein.

Basically he was so prepared for Aiden that I was very confident. SUCH a difference now than before when he was just dumping fluids, blood pressure problems, bradycardia.. and so on and so on. NOw during surgery..they give him fluids, IV steriods and robinul (an atropine like agent to keep his heart rate up)... Aiden woke up perfectly. It was wonderful. YAY! This was the same protocol that cincinatti used and they were thrilled we had it all written down for them here.

WOW things don't typically go this smoothly.. so I am just so happy.

Thank you for your prayers! Thank you. I took a TON of photos of that last IV. In the mean time he is very sore, but munching on his french fries and watching Sponge Bob. He can't get the port wet for 5 days and the surgeon said, "Keep him QUIET for about 12 days." SURE! He said NO bowling on the Wii for 12 days. OH NO!

But thank God for the playstation his friends gave him, he has that spongebob he can play all week. YAY!

I will update later but until then.. THANK YOU!

Lisa

---

Thursday, July 24, 2008 8:56 AM CDT

UPDATE thursday night

UHHHH slap me and call me stupid, but I just got Aiden's orders for his IV therapy at home. Uhhh he will not be hooked up once a week or once every 2 weeks.. they want him on 500 cc's of IV fluids NIGHTLY. Every night.

I just am imaginging how my pediatrician will react. (imagine steam shooting from her ears) I am just sitting here thinking.. ok this may change his life for the good.. or this will increase his risk for infection tremendously.

I just have to have faith. I have to have faith. NIGHTLY?

once I am trained.. NO ONE.. I mean NO ONE.. will touch this kid's port. I will be the sole person to hook him up to his IV's. I would rather be responsible of my own child's line that trusting someone else.

I feel like we need some encouragement...

One..
two...
three...

TEAM!

Freaking but FAITHFUL,
Lisa
Team mom



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
previous update

Aiden is ready for his surgery. He knows about it and he says he is ready. Take my word for it.. this only gets more complicated as these kids get older. Now it isn't really about ME and my feelings.. it is about him and still raising him to be a regular kid with some irregular circumstances.

I will say that Aiden's spirits are greatly improved this week. Lots of laughter. I never thought that would decrease in this home, but it did. Steriods can really cause some emotional side effects. So the giggles and smiles are really great to hear and see!

I know this may be a shocker to all those who know me, but Biscuit (the new puppy) has remained a secret still. Yes it is burning a hole in me, but I know it is best to just let the whole thing be a suprise for when the puppy is ready on the 11th.

Anyway, this is just a short update, but I wanted to let you all know the scoop. Suregery is scheduled for 9:30. I believe it will be a 1 hour deal, then recovery (which can vary) He will go to the floor after that and then just rest and chill till Saturday afternoon. Keep him in your thoughts! I am going to go to Blockbuster and rent a new Wii game for when he is home. I saw Wall E there... I think that will be the winner.

Next time I update hopefully it will be to say, "All is well!"

Love The Hawk Family

---

Monday, July 21, 2008 12:56 AM CDT

Joey and I got to be ALONE this weekend. That means for the first time since 2004 We spent longer than 10 hours together with out children. It was Heaven! However... I learned a few things I did not know.

Did you know?

Did you know....Joey is the actual REASON the Ray's (baseball team) are having their best season in history! When he turns ON the radio to listen to the game, and they get a homerun at that moment... Joey looks at me and says, "See? See? I told you I was good luck to them!"

Did you know.... that the united States should have a better way of regulating the organic food's industry? That in Europe they have this great system that tracks all their foods, and land to make sure it is environmentally responsible? (this information came after a long- *uninterupted* lecture on the citrus industry, organic, industry, and export and inport industry.. thank goodess NO children were there to interupt THAT lecture..umm errr discussion.)

Did you know... People actually attend this thing called MOVIES? Moovies? something like that. It seems that there is this big room in which people come with lots of seats, and sit and watch the most recent releases? They call this a... DATE. It is cool. You should try it!

Did you know... that when you hear your kid's on the phone arguing in the background, and you aren't there... they sound cuter than ever?

Did you know.... that after 10 years of being with the same person you can still get butterflies?

Did you know....without your kid's foot kicking you in the head while you sleep, you actually can sleep for 8 hours consecutively?

Did you know....that sleep... feels... Good.

~~~~~~~~~~~~~~~~~~~~

Being alone with Joey also gave us an oppertunity to find our new puppy. He is only 5 weeks old. We can't take him home for 3 more weeks. But in the meantime, we are NOT telling Aiden. We instead have a better plan.

The puppy is located at a pool and Spa store. (weird I know). So we are going to go into the store looking for a pool toy. When we go in, Joey has it all planned. He will ask, "Do you have any puppies? Not normal puppies. But THE most special.. MOST adorable.. and perfect puppy?" Then they will bring him out. Bow on him and all.

This puppy is Rolex's clone. Identical markings. IDENTICAL. He is a very short legged Jack Russel like Rolex. I had another picked out.. a tiny female that looked like Rolex's daughter Emma, but when they brought out the males 5 weeks old puppies. Joey reached in, and picked up that lump of wrinkles and fur, and said, "THIS is Aiden's puppy".

Just like Aiden had prayed for. A tiny baby Rolex.

His name will be Biscuit. And it is a secret. Something I can set my mind on for the next 3 weeks, that is positive. I know if I told Aiden it would be more torture for him... so just keep it to yourselves.. and soon we will tell you all about the big day Biscuit is ours.

Today Aiden had a one hour ultrasound on his neck, chest, and heart. It seems they found something "interesting" while looking at his ultrasound. Our tech called the radiologist in to look at Aiden's pictures. Then he muttered something about "interesting" and "get some shots of it.. I will call the surgeon and tell him"...

I just blurted out..."Umm By the way he is a mystery diagnosis.. if you can figure this out, I will buy you a steak dinner!" The radiologist never looked at me, he just said, to take some extra photos "just in case"..

I don't know what all that means.. but maybe it is something helpful to make us see things clearer with Aiden.Hey Maybe it is the answer to our prayers? You can never lose hope!

Anyway... if all else is normal, I will update Friday from the surgery recovery. Thanks for checking in on my boy, our family, and forever just helping us through this crazy journey. You know people sometimes email me and say, "I bet you get these emails all the time.. but I wanted you to know I was praying"... I just wanted to let you know, No. I don't get those emails all the time, and each one is printed and saved and read over and over. So thank you if you just recently emailed me. You know who you are. Thank you so much for that hope you give us.

XOXOX
Lisa

---

Wednesday, July 16, 2008 12:40 AM CDT

Went to Dr. Harmell today. Surgeon at All Children's hospital. Aiden's port is scheduled for next friday. He will get an ultrasound on his vessles this friday since he has already had a port/broviac in the past to make sure his vessles are ok. The appointment went exactly like I had hoped, Dr. Harmell was pleased to see Aiden. He was the surgeon who did his Kasai, broviac, and a few other little things. He was not uncomfortable at all with the immunesupression, steriods, or allergies. I didn't say much. I just waited for him to ask about the previous anesthesia history and we talked about how he can't have certian medicines etc. We are requesting the identical anesthesia protocol that Cincinnati used 2 months ago for his scope. We now have to include medicine for Aiden's heart rate to keep it up. (that makes me sad)

Dr. H told Aiden, "this will make your life so much better. Your IV will be covered up by your skin when you don't need it, so you can go swimming." Aiden just shrugged and tried to pretend he couldn't hear him. Funny thing, so did I.

SO Friday Ultrasound, then this weekend will be a special weekend. Our last with out a central line. The last weekend where a fever is a fever and not a trip to a hospital. Life will change with this port. I hope more for the better and the negatives are outweighed by Aiden's improved health and energy.

I want this all to go away. I am just praying for some amazing miracle to heal Aiden over the next week so we never have to have him have another surgery again. He has had so many I have lost count. No need to keep count on such awful things.

Aiden did have a good day yesterday though. Running and playing with spencer, even if he got out of breath he was smiling so much I just wanted to cry. When we came home our sweet neighbors who take Aiden to swim in their pool, so sweetly thought of another quiet game to play, since he tired out so quickly the other day while they tried swim.

And in BIG news: We are currently on the hunt for a new puppy for Aiden. It is time. Joey and I both feel like this is something that would be so good for his spirits. Something positive and happy in the home. Something for Aiden to 'take care of.' He will help me train the puppy and take care of it. We have visited the humane society several times. Joey went today while on break at work. We will most likely drag out this process as long as we can since it has given Aiden so much to look forward to. I am hoping as he is recovering from his port, that his new puppy will get his mind off of things. I have a trail to rolex's siblings and hoping that there might be a rolex nephew out there for us to call as our own. Fingers crossed.

I will just ask you to keep Aiden in your prayers of course. As we drove home from our trip, Aiden said something that I keep replaying in my head.

Just looking out the window, as sad as I have ever seen him he says:

"mommy I just wish I could play outside like I used to."

Ouch...

Knife

plunging

into

my

heart.

"You will sweetie. You will. Mommy promises."

PLease pray that the promises that Joey and I are making to Aiden come true, very soon. There is only so much Joey and I can do to make this seem ok. And it seems our bag of tricks has been a tad played out.

Believing in miracles
Lisa

---

Friday, July 11, 2008 7:43 AM CDT

We have made it to our Georgia destination. And not too soon if I can say it. The boys were angels in the car, thank God. As you know I am currently Super Mom (stupid mom) and doing a road trip with the two boys and no husband. My beloved (nickname for Joey when I miss him...unlike his nickname I have for him when I am home picking up his shoes and closing the fridge door behind him) is home, and it is just me and the boys. From the top corner of Tennesee to middle west florida. Stupid mom. No truelly though it isn't bad... well all except the buckets of rain that poured all over my car on the way here.

Lordy the sky was falling on our way home from The Vincents. I felt like we had that proverbial "dark cloud" over our car the whole way. You know the one that seems to loom over Droopy in the cartoons? He takes a step to the left, so does the cloud. It rained so hard several times I had to actually pull over on the interstate with the flashers on. Thank Goodness though I had my little weather forcaster in the back seat reminding me of the current conditions.

"ITS RAINING!!!" 100x a minute from little Mason. Yep buddy I know.

I finally saw some break in the rain and called Joey. As we were talking I heard him fussing about some bees. He said, "hunny do you know where we tore down the carport (his side of the yard), well there seems to be some bees that made a little nest back here." Then suddenly I dramatic noise:

Him: "Whoa!!! Holy cow! There are some bees here! Whoa!" Breathing heavy.

Me: "Bees? How MANY bees?"

Him: "Oh a big swarm of them"

This is typical Joey, I am from Chicago.. I don't speak southern or F.F.A or country or whatever Joey speaks..

Me: "OK Hunny, what is a swarm? 10? 5?"

Him: "whoa! No ...about 2 or 3 hundered bees."

Nice.

SO here I am driving with my own personal dark cloud and buckets of rain, and I hear my house is being swarmed with a cloud of Bees. I immediatly check my water to make sure it isn't turning to blood. What is next? A flock of locusts?!

No you know that the Hawk family has tribulations of other forms. They come in the form of HIVES! Mr. Prednisone has managed to cover in hives on the way home yesterday. HIVES?!? Can someone explain THAT one to me? ALL those immunesupression drugs, and hives. Of course!

I found myself driving down the interestate with my rear view mirror fixated on Aiden the whole way. (if I set it on Mason he would just wave at me the whole time) Does anyone else ever do that? Am I the only one? I just had it on Aiden so I could galnce back and have these meloncholy moments thinking about how much these darn drugs have done to his little body.

Cheryl and I had a bunch of talks about the plight of these innocent children who are sick. We talked about the steriods and how even though it SEEMS frivilous, the change of your child's appearance is so hard to watch. Cheryl worded it perfectly as she looked back on sweet Haley's life. She said, 'Her illness robbed her of her childhood and her life, even her illness robbed her of her beauty. The steriods made her perpetually puffy and then the terrible brain bleed and brain surgery robbed her of her long golden hair.' How unfair that is. Physical changes...It isn't the worst thing to come with having a child with illness, but it just is unfair. It isn't fair that Aiden can't catch his breath, and that he has lost so much energy. it isn't fair that he has now learned to be embarressecd of his tummy, when only two months ago he was SO proud! Being sick just isn't fair.

Of course though, The last full day we had in Tenesee Aiden had a really good day. It was about 70 degrees and rainy. Aiden sort of came out of his hibernation from the heat. Kendall and him would be outside playing teather ball in the rain, just soaking wet laughing. I loved to see it. Of course when he was tired there was no better escape than their bonus room. Aiden had fallen in love....

they have a Wii.

As you all know Aiden has a love for video games. (not to be suprised he IS a boy afterall), but the Wii was like the pinicle of his obsession. It was so good to see him inside, resting but still happy. Being inside away from the heat wasn't like torture for him, he was so happy! Then the sweetest thing happened. One day before we left Cheryls, she told me that she had gotten Aiden his very own Wii to take home. They had searched for 3 days, and then found one for him. Can you believe that!? It just meant so much to us. She knew that it would be something he could do in Florida and really enjoy while inside.

God bless that family. They already did their time. Had a innocent child robbed of so much because of sickness, and in the end called home to Heaven. But instead of running from the world of childhood suffering and illness, they make a foundation to serve these families. I can't say I would be so selfless... I just know that they are some of the most special people on the planet. Poor Bruce had to even call and page our transplant team to get labs ordered for Aiden while we were there. Oh just stab wme with guilt... that was the last thing I wanted them to have to endure. But with grace and love they took care of Aiden. God bless them.

SO today is a new day... I know Aiden isn't really all that well. I know things are just so bad for him right now, but we are reminding ourselves of our anthem. Eyes up and Kick on. (right ladies?) Eyes up and kick on. I have not told Aiden about the appointment next week. I am hoping that we will get things a little more settled and create a bribe that will suffice this new huge change of life for him. I am imagining an IV pole in the shape of a baseball bat in his room or something. And thank God for this Wii, something else to make it all better.


I just have to make a shout out to my pediatrician's office. They work in overtime for us. I just got a call from Michelle, one of Aiden's nurses.. putting out a new fire for us. You know, I just have to say, even though I would give anything for Aiden to never have another sick day and that he was never sick in his life, we sure have been blessed by angels along this path. I am reminded of how lucky we really have been in spite of it all. Sure we may have borrowed Droopy's dark cloud, and we have hundreds of bees swarming my home, and yes one of the DVD players in the car isn't working (GASP~!) but at least the dark cloud isn't throwing any lightening, and the bees are OUTSIDE instead of inside, and well.. I don't have anything nice to say about the broken DVD player and a 5 1/2 hour car drive.. but you get the point. It could always be worse.

Thank you thank you thank you for praying for Aiden. Thank you. God how I just love that kid. And don't get me wrong as I complain about how the steriods have changed him, I am still his proud Momma and know he is the cutest pumpkin ever... (along side his preciously adorable baby brother). Just keep praying guys... we are gonna figure this out. One way or another, we are gonna make him better.

When you think you can't handle one more thing, something else comes your way and you suddenly are handling the old with a stength from inside you didn't think you had. We have the strength to get through this, and I can't wait till we are on the otherside looking back.

Updates soon to come... and you know they will revolve around the already overly competetive couple and the Wii. I am sure I am gonna school Joey in some bowling... this is gonna bring our marriage to a whole new level. (uhh yeah I know it is Aiden's game, but c'mon this is totally up our alley-no pun)

Stay tuned...and keep praying. We have faith that Aiden will be healed. I just know it.

Love,
Super mom (stupid mom) in the midst of our travels
St. pete by tonight.
XOXOX

---

Tuesday, July 8, 2008 3:25 PM CDT

Soooooooooo we have a plan

Aiden's transplant doctor called today, and they feel strongly after looking at his labs and just knowing all the things going on with him, that his port needs to be top priority right now. So, after we find out for sure the results of the stool study we are leaving for florida. Home sweet home. Don't faint or anything, but Aiden has an appointment at All Children's on Wednesday (next week) with the surgeon to consult and schedule Aiden's port.

I could wait till next week to do it in cinci, but the problem with that is 1) the Hawk family has invaded the Vincents long enough and 2) I would have Mason and Aiden by myself while my son was in a surgery... not exactly a dream come true.

PLUS our children's hospital shoudl be capable of doing this very common surgery, even if it is on a very uncommon child. We have specifically requested a surgeon who is familiar with Aiden. And hopefully we won't have the usual road block in front of us.

Aiden's labs weren't so great, and symptomatically he isn't so great. Not too bad.. but not too great.

I THINK we are still trying to get Aiden down on the prednisone because cinci knows how hard this has been on his body, and that even though we see some GI issues, we need to not live on steriods like this. I will find out that aspect of the plan tomorrow. I know this eos saga isn't over, but take my word I am over even thinking about it! Let's face it: Aiden's eosinophillic disease has created the number one thing a person DOES NOT want to hear on their vacation:

"We need a stool sample..... here is the cup"

So, At this point, I am ok knowing that the heart monitor (which is NO big deal) is still being held off, but the port (which IS a big deal) will be done asap when we get home. As strange as this is, I am happy about that.

OK yes, readers of the site... you have seen the multi personalities of Lisa. You may remember the previous whinning about the port and how tragic I felt it was, but that is OLD news people. Now the port is totally "in", and we are all happy about it. Why? You ask... Well the port is how Aiden is gonna be able to be AIDEN again. He will have the correct about of fluids in his vessles, in his organs, in his brain... and Aiden will be AIDNEN! I can't wait.

So, even though we have had our share of drama here on our "trip" ... and even though we came a thousand miles to simply come HOME to do his port... Things all worked out for the best. (All except the fact Bruce has tortured me with the Tour De France. )

Anyway, I am too distracted now to tell the stories of Joey and fireworks and Bubba Billy's flame shack but I promise I will later.

Love to you, thanks soooo much for checking in our family. Thank you for praying for Aiden. I can't wait till he is feeling better. I sure miss that spunky little boy.

Love Lisa

---

Sunday, July 6, 2008 8:59 PM CDT

OK so... it seems that the banging on the computer and screaming at it during my facebook faux pa saved me from a mass emailing. Soooo... now if you have NOT recieved a request to be my friend.. no harm.. I still love you. (especially the specific peeps who signed the guestbook since yesterday) I can't say I am not a tad relieved my mass mailing was stopped, but still dissapointed that the Assignment America failed so misserably. Oh well.. you know there will be more to come.

In other news, we went to the hospital to get Aiden's labs done. Besides the lack of parking it went really well. Aiden was so amazing, didn't cry, but was really scared. I felt bad for him, but bought him a toy in reward.

I have no results, I will update when I do. Enjoy the above new photos.. I have more and more to come.

XOXOXOXO

Love Lisa




~~~~~~~~~~~~~~~~~~~~~~~~~


previous Sunday update

I sometimes can't believe my life... it is just really this crazy all the time. We come up to cinci to have a surgery. We get here and then they say no lets wait. We were shocked and dissapointed, but onward to the Vincent's house . We get here and then.. the first day here... Aiden has a poopy accident. I looked at Joey and just cringed. The following day.. poopy accident. The following day again.. poopy accident. Bloody diahrea. Today..Bloody diahrea again.

Joey and I had JUST gotten down half way on the steriods.. about 25mgs of prednisone. We were soo excited, and of course even more hoping to get it lowered because of the port/ heart monitor surgery. I just was so sad to see his eosinphillic disease is STILL flaring. Dear God what on earth! I mean come on!

I guess God knew what he was doing when he had us wait on the surgery. Maybe we would have thought it was an adverse reaction or something to the anesthesia. Who knows. Maybe he would have gotten sick, or maybe it would have been just too much. I don't know.

I DO know that I have received a VERY thorough email from his liver team in cinci telling me to get labs, and stool studies done TOMORROW for an infectious process. Just in case this ISN"T the eos and it is an infection. You know what.. here is part of the email Aiden's liver doctor in Cincinnati sent me.. these are the tests we will do:

"He needs stool studies to be sent asap. I cannot order labs in TN, so your friend (ie: Angel Haley's Dad is a doctor here) might be willing to, if not you need to come to our ED or go home and have your pediatrician order them for us. He needs: stool culture, stool for C Diff antigen, stool for giardia and cryptosporidium antigen, stool for O&P, and stool PCRs for adenovirus enterovirus EBV CMV.I also need a blood sample for quantitative PCRs for EBV and CMV, a blood count, liver profile and kidney profile. I like also to start a GI antibiotic, but would like first to see the stool and blood specimens out"


EEKS! Nice vacation huh? Did I mention that since I have been here Cheryl has been unable to breath and I baby sat her kids while her and Bruce were in the hospital getting IV's and CT scans on her lungs? Yup.. Something fishy is going on around here!

In anyway, I am obviously nausious at the thought of aiden NOT having an infection and him actually having the Eosinnophillic disease flaring while still huge swollen and puffy on steriods. I just want my little baby back! I had to make run to walmart today just to buy him underwear and shorts in a bigger size because he can't even wear ANYTHING I packed.

So... also in the email from the transplant team Aiden's doctor said, With his allergic symptoms and eos there is no way he will come off the steriods, so she would talk to the cardiologist about just doing the port and heart monitor anyway, even with the obvious risk of surgery.

I feel helpless for Aiden, but also feel like I am in good hands. I told Cheryl yesterday, ALL of this is just so hard to fathom for me. I can't wrap my brain around why all of this has happened. In these circumstances, if it makes NO logical sense to me.. I know that God has a plan. He either wants to prepare us or protect us from something. I am just reminding myself, that here I am in Tenessee, Joey flew home to go back to work, and here I am. I am a LOT closer to Cinci if we need to go back, and it is free to stay here while we wait to see.

Anyway, so obviously things have been really not turning out as planned while here.... but I did have something to do keep my mind off it all. Lets call it a Guestbook Game( Assignment America)...Not everyone can play, but you can all laugh at my moronic mistake I made.

So with the influence of two teen boys, I finally decided to make a facebook page. I had been piddling with it and playing around while we were just sitting here and would you know Lisa made a major error.

IT SEEMS: Facebook has a handy dandy little trick. It just gets on your email account and it can find people who are also members of facebook. So I was excited to see a lot of my friends were there! I was clicking away asking for people I KNEW to be my friends. Then IT SEEMS: I got a little clicking happy. I clicked and clicked and then realized I just sent a "friend request" to my ENTIRE AOL mailbox. That is EVERY SINGLE INDIVIDUAL EVER TO BE IN MY contact list! UHHHHHH DO you know that AOL has this little deal where if you send or recieve an email from someone ONCE you store them forever into your mail contact list??? Yes... let your mind go there.

This means That I.... Lisa Hawk, the internet moron, has sent an email like THIS:

"Lisa Hawk would like YOU to be her FRIEND on facebook!" to:

CEO of Lifelink
every doctor I have ever emailed
My pastor
church prayer list
Hospital administration
old teachers at University of Florida
some lady who owns a rental that I complained to because her tenants were selling drugs

The list goes on...

SO if you can imagine this:

Dear Dr. Grubb, (the man who is world renowned and is saving my child's life)

Lisa Hawk would like YOU to be her friend.



Nice.. realllll nice

I should not be with out adult supervision for too long. SERIOUSLY!

SO Assignment america, if you received one of these harrassing emails by me.. I am sorry... but lets just use it for some entertainment. Sign my guestbook! Let me know. I think it would be rather hilarious to see if there were a 20 or so people say, "Yup Lisa, you harrassed me last night"

If not, it is ok... I still have gotten many hysterical laughs from the thought of One of Aiden's old doctors opening this email from me. Ohhhhh Life's little pleasures. (yes this does include Atlanta.)

expect an update soon... we have poop to examine and blood to draw.

Lots of love

Lisa, Aiden and Mason
(missing Joey so much)

---

Thursday, July 3, 2008 8:21 AM CDT

From Aiden to Spencer:

"I am watching TV, Love Mr. Computer. John Wilson"

To everyone else:

Well How do I update with this? I will just gor for it.

Once we arrived in front of our cardiologist, he was very uncomfortable with the incrediably high doses of steriods Aiden was on, and what it had done in such a short time to his body. He felt Aiden was now too high risk for the surgery.

He wanted Aiden's heart monitored, but just was too nervous about all the steriods and supression. So, Aiden was placed on a holtor monitor for 24 hours, and NOW he has another heart monitor he will wear for one month. This was not what anyone wanted, but of course as life would have it, sometimes things don't work out as planned.

Aiden was devastated about the holtor monitor, I had to hold him down to put it on. He was so mad. I don't think I saw him smile for the entire 24 hours. I heard him tell Mason, "I have to wear this heart THERMOMITOR because they didn't do my boo boo surgery." I could see in Aiden's eyes that he would rather have it over with than have to wait again.

SO now he will wear an external monitor and we must return in a month or 6 weeks when Aiden's steriods are at a normal level. Gee just what we can do. No problem. Sure.

Anyway, obviously God has some plan in all of this. I don't understand. Dr. Knillians (cardiology) hopes to catch an arythmia with out surgery, but just was very very uncomfortable with the obvious side effects Aiden has had from the steriods. He has requested he come down faster on the steriods. I just pray Aiden does fully go into remisson from his Eosinophillic disease so we can. UGHHHHHHHHHH

Second thing that has come out of the apointment was at least he got to see Aiden's hands do the "turning purple/red" thing. Thankfully (or not) he was incrediably veiny that day and the cardiologist could see the blood filling the "tiny capilaries" in his hands and arms. He explained something about Aiden having very poor vascular tone, and that all of these things were caused by a failing autonomic system.

He wanted (just as Aiden's pedi) to see what Aiden's symptoms looked like with out the steriods. Could the steriods be putting him in this persistent dysautonomic crisis? Or is it that Aiden is worse? He asked me that several times. DO YOU THINK HE IS WORSE? I kept saying, "I don't know what or why.. but he IS 100orse than last summer."

We all still agreed that IV fluids were the way to go, but again not with the steriods. He wasn't so worried about him HAVING the port, but more healing from the surgeries. He is just on such high high doses.

SO the last good thing that came from the appointment was the discussion of Aiden's medication. Joey and I felt the flourinef has been helping Aiden with his symtoms. Not really where he is anywhere near normal but we did actually feel him sticky a few times.

Ok explaination:

Aiden can not sweat. Most of Aiden's problems revolve around one major problem. Blood volume. For some reason Aiden's kidneys dump out all of the oral fluids that Aiden needs. His kidneys are working 300vertime and in result no matter how much Aiden is drinking, he is dehydrated. When a body is loosing so much fluid, it tries to hold on to any or all it can. SO Aiden's body has told itself,.... DO NOT SWEAT. If he sweats he will lose more fluid. Of course all of this is a big mistake and Aiden NEEDS to sweat to cool himself and not overheat. SO, the doctors put Aiden on a medication called Flouirnef. This helps your body retain fluid. It makes you not urinate as frequently, and helps your veins plump up with more fluid. Aiden is on a typical adult dose... But over the past few weeks we have actually felt Aiden a tiny bit sticky. Not sweating, but some moisuture on his back. This is the first time in 2 1/2 years. To us it is huge!

So, while we were at the appointment, we discussed this tiny victory and talked about some more ideas. Dr, Flores our st. pete kidney doctor wanted to try Aiden on Clonidine patch. The Cinci doctor also agrees that could help Aiden as well. It seems this is a common drug also used in patients with dysatonomia. It is a blood pressure medication but a special kind of blood pressure medication. It specifically works on the "catacholamines" that his adrenal gland secretes.

OK explaination:
Aiden's adrenal gland secretes a hormone called catacholomines. This can results in great spikes and dips in blood pressure. It effects Aiden's kidney production and his problems with his vessels leaking fluid. The point of this medication isn't really about the blood pressure, but by calming this process maybe we can see a more stable Aiden as a result.

They have a theory that the steriods have also causing peaks and valleys on Aiden's blood pressure thus he has had a TERRIBLE last month or so. Reason number 3 to not do anything till he is down lower on the steriods.

SO, the plan is:

Aiden wear external heart monitor for the next 30 days
Get Aiden back to his baseline 7.5 mgs of prednisone
come to cinci for Reveal dx (heart monitr)
PLace port
Add the Clonidine Patch
wait one month on clonidine patch and then double Aiden's flourinef to max dose.


SIgh. That is the plan.

Joey and I just sat talking to the cardiologist and there was one thing clear... we are about to exhaust all the treatments that they have for Aiden's terrible disorder. If his heart monitor does not show any Stops or major problems other than the low heart rate at night, then we kind of are out of options. Not out of hope.. just options.

This is so hard. I just want Aiden back to normal.

SO now we wait, We are getting some R and R, some peace, and some family time at our dear friends. We arrived in the beautiful mountains of Tennessee yesterday at Angel Haley's House. Aiden had not smiled in over 30 hours. Not one smile. Nothing. When he got here, he ran to Bruce and Nick and Logan and then Cheryl with a huge grin and hug. The famous Kendall is at a sleep over, so today will be wonderful when she arrives.

The weather is easily 15 degrees cooler here. Aiden is playing and laughing. Last night they got mason jars and caught fireflies. Joey and I are blessed to be with Bruce and cheryl, They know the ups and downs of this life of the sick kid.

So this morning, when I woke up I said to cheryl.. how do I update this news? How do I even say, what happened on our trip? She simply said

"The bad news is: they thought Aiden was too high risk for the surgery. Come back in a month

The good news is: we get to spend some time with our friends before we go home"

Yep that is pretty much it.

I need some boosting. I need some more energy, and where else can I get it than a place that is so full of hope. Even in the worst of worst scenarios. One thing I know for sure, If Aiden was never sick we would have never got to meet Haley and her family.

SO now it is a new morning, I am just reminding myself that everything has a reason, and that even though the last several visits to the hospital have been amazing and great, that this was just par for the course. Dissapointing but also part of the plan. I don't want to risk Aiden just because of convienence and timing. If they are worried about him, I don't want to do it. I will wait for the time is right and we will figure it out from there.

Keep praying, I know we will have a mircale for Aiden.

With love and resolve
Lisa
the Team Mom

---

Sunday, June 29, 2008 7:43 PM CDT

We are here in Perry visiting Joey's parent's. We were able to attend Joey's family church.. the one he was raised in this morning. I enjoyed the service, but we really loved seeing everyone in the Sunday School classes. We went from class to class thanking the special folks that have taken Aiden on as their little buddy. Since he was a baby, they have followed his journey, and have been so wonderful to us over the years. Currently they have just wiped us out of all of our cookbooks! I believe I can officially say we are sold out! We brought the remaining 57 we had and they are putting it in shops around town and selling it at church. Joey took time to speak to the Sunday school classes updating them on how Aiden is doing. It was a really special morning.

We also got to visit with Joey's family, brother Thad,




and "sister" kelly.



We say "sister" because their families are so close it might as well be that way. Aiden fell in LOVE with Kelly and Will's baby Liam. He wouldn't take his eyes off of him. It was PRECIOUS! Of course, I got to hold him and ummm lets just say, I looked at the door and almost ran out with him he is sooo cute!





Today has been a day of vacation, tomorrow on the other hand it will be on the road again. Getting up at the crack of dawn and then driving straight to Cincinnati. We bit the bullet and bought a new Elmo for the road. I don't know if my nerves can handle one more moment of "Mist" the low budget Irish movie about sheep dogs. UGHHHH It might have to get "left" somewhere.

Tuesday at 9:30 we see Aiden's cardiologost, at that time we will find out the "plan" for the heart monitor. Just typing that I feel nerves and the butterflies in my chest. I hate this.

Aiden has been weaning down on his steriods. He seems a tiny less puffy to us. I know when people have seen him it is actually jaw dropping how puffy he has become. Usually I am the one with the jaw dropped, because I will turn around and pick him up to cuddle him and I forget how he has gotten so much bigger. But still as cute as EVER!

Mason was a champ for his EEG on friday, He was mildly annoyed when they "messed up his hair" but never cried or complained. HGe just sa with this look of well... THIS look:



"Uhhh.. is it just me, or has therapy gotten a little WEIRD?"

He didn't blink through the whole procedure, but sure enough back in the car he was blinking like crazy. I really in my gut don't think this is a seizure. He is not at ALL spaced out or anything. He talks through it, and then even says, "Make my eye stop!" He is totally aware and I think he is just got a twitch or something. I am not in the slightest worried about it, I was only worried if he would be scared in the test. And he wasn't. The lady said, they NEVER see kids like him, he never cried. I told her that I was perfectly aware of how "other" kids behaved in this... considering the claw marks were still on the doorway from the last time Aiden was there. Anyhoo I will update of course with the results whenever they are back.. but no sleep has ben lost.

From where I am typing I can hear the boys laughing and running through their Nana and Babu's house. Today was a wonderful day, Thank You Perry United Methodist Church for all you have done. I will update soon .. hopefully it will be after our appointment on tuesday. Keep Aiden in your thoughts and prayers. He is very scared about the surgery and heart monitor, but seems to have accepted the port pretty well. I look forward to the day he is tube and gadget free, and able to be just like I was as a child. Carefree. Thank God for all of his wonderful doctors and nurses trying to get him that way.

Much love to you,

XOXOX

The Hawk Family

---

Thursday, June 26, 2008 10:20 PM CDT

OK so I had this incrediably wonderful PLANNED update for you guys. You know when I plan an update, it is gonna be good. BUT of course... my plans were foiled yet again.

SO no I will not win the pulizter prize for this update, ok lets face it I am no contender, BUT I will also vow to NOT let the crazy events of the last few days take our joy and celebration. So here it goes:


drum rollll

dramatic pause

Annoucement:

Wednesday Mason GRADUATED physical therapy!!!!!!!!!!!!!!!!!

Can you stand it?!? Mason Grady, who did NOT even really walk only EIGHT months ago.. is now GRADUATED physical therapy. My little baby who was over 15 months delayed on his gross motor skills, is DONE with PT!!!!!!!!! AND we see the end of the road ahead of us for Occupational therapy and Speech therapy. It is such a wonderful thing!

He can jump, and run, and climb and he is fast and funny and can dance. OK lets face it, he has joey's dance moves, so that could use some work, but everything else is amazing! He still has some catching up to do, but instead of keeping him in therapy for another year they "trust" (aka: sick of my whinning and complaining about coming) me to keep working on everything at home. I got a manual and a list of things he needs to accomplish until he is 3 1/2 Then he will come and be re-evaluated. If he seems behind I will bring him in and we will check it out, but I know all of this will just take time. I mean c'mon he is amazing! And man he worked HARD! I was so proud of him.

SOoooooooooo where are the photos? OK well JULIE, my wonderful friend, sent me one of her cameras! I got this fantastic fancy dancy camera JUST IN TIME for his graduation. I made Mason a graduation cap, and then we all went. Aiden included to therapy that day. I got some adorable photos with his therapist, whom is moving out of town tomorrow for good, and of him doing his last day ever on the darn balance ball.

and I deleted them all.

All of them!

New camera, tempted me to push buttons and play with it, and get fancy and get in the kid's faces and pretend i was a professional.. and I delete ALL OF THE PHOTOS. Forever. Gone.

Ok no problem.. I still have the graduation cap, well yeah ok Kim is gone and never to come back, but I can take photos later of him there with the hat on. But darn it.. I was dissapointed. That little voice in my head kept telling me to stop getting fancy with the zoom.. and then BEEP all gone in a push.

SOoooo that is ok. He still graduated, no one is gonna take our victory. But (she says sheepishly with sarcasm dripping) that was before he started "blinking".

SO Mason is blinking. Like a lot. Like BLINK BLINK BLINK BLINK uhh for 3 minutes. He has been doing it for days.. I have been trying to ignore it, but he did it for his therapist. She told me it looked like a tic, or something, but I should talk to his pedi. I was NOT about to talk to his pedi about this, Uhh did I mention we JUST graduated? Helloo!

So then he keeps it up, and Joey questions me and I stil ignore. But today I take him to the MOMS club playdate, and he decides to blink blink blink blink for a few minutes for my friends. The of course, the level headed moms remind me you know something about those uhhh lesions that sit in two different locations of his brain. Ah crud. Now I have to call my pedi, don't I?

I decided one more manuever of denial and head over to my parents house to show my mom Mason's blink blink blink blink. She does me good, steers me into denial and reminds me that Mason is rather a tad Obessesive compulsive and probably has an eyelash (for a week) and it is bothering him. I buy it, for a moment.. until blink blink uhh for about 5 minutes. UGHHHHHH

Did I mention we were leaving for cincinnati SATURDAY? I take him to the pedi, to which of course she says, "sorry but umm a kids with normal MRI's woudl probably get a diagnosis for a tic, for Mason is gonna have to get an EEG
.... and uhhh do it tomorrow before you leave." I guess those two cysts on two different parts of his brain, and the hypotonia, and delay, and metabolic defiancy.. has forced me to take what would have been a perfectly normal day of procrastinating my packing.. to NOW getting an EEG for Mason.

Are you kidding me?

But he just graduated!

But we are leaving SATURDAY for cincinnati!

I mean I guess at least this time we didn't lose all of our luggage and fly into the WRONG city! But how come all the drama? I mean I am even starting to wonder myself... "self? are you nuts?"

So anyway, whatever.. Stupid stupid garbage shmarbabge. The victory of Mason's amazing hard work, will NOT be overshadowed by some stupid test that doesn't hurt and just is boring and annoying. Hey and Mason's LOVES hats! (and purses, and nail polish) so this won't be a big deal. But just annoying.

Just FYI at exactly 2 1/2 years old, AIDEN started blinking and blinking.. he got an EEG and shocker.. it was NOT normal. He was having seizures. Med toxicity. And the crowd asked, "so what did you do about it?"

Nada. Nothing. Because it was just BLINKING!

SO.... grumble drumble.. I am going to locate a photo of Mason graduating, I am going to post photos of our amazing wonderful Aiden. Whom by the way is just my other hero of the week. I love that kid!

So, I will keep ya'll posted.. Life is good!!! Let's celebrate that boy who can RUN, CLIMB, JUMP, and DANCE!

Update to come tomorrow!

XOXO Lisa

---

Friday, June 20, 2008 10:32 AM CDT

SO finally after 2 1/2 years I have update the top of Aiden's page. You know the part we all skip over because it is the same every day? The part after the photos and before the birthday tickers? Well it is different now. Infact today lets just make it my "update".

I know there are new people who come here on the site, to learn about Aiden and I have wanted to update the top to explain to people why he spends so much time in a hospital or why he is sick so much, but I just hadn't had the energy to write it all down. So now, it is there for all to read.

It starts with "Welcome to my site" and ends with "Stay tuned MIRACLES HAPPEN HERE".

We are currently getting ready for another trip to cincinnati to see Aiden's specialists, next weekend. Joey has been working so hard, last week he worked 82 hours 7 days in a row. He even worked on Father's Day to help pay for the trip! He is my hero. If you could please keep us in your prayers.

Of course my camera is broken and I can't take photos of what Aiden has morphed into. You know last update I was giggling on how cute he looked, but now it has gone from cute and chubby to just plain sad. He is so big that I barely recognize him! Last night I sat with his photo from only a month ago looking at it because I had forgotten how tiny and cute he was. Aiden is so big an uncomfortable my heart is breaking for him. He can't swim across the pool with out getting out of breath. These steriods are temporary so I am just hanging tough for him. It all just changed though last weekend, when he started to cry and said, he didn't want anyone to call him fat. Poor buddy. SO now I tell him he looks a little less puffy and he jumps for joy.

Anyway, I feel like I am in withdrawl from my camera after it FINNALY broke, so when I found a half used SPongeBob disposable camera I was so excited. ***Update I posted photos above. He is so CUTE!

Anyway, Please read the new upper portion of Aiden's site... afterall, I spent all these tears writing it, someone might as well read it.

I will update soon with more about Aiden. Love and hugs

Lisa

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Friday, June 13, 2008 7:45 PM CDT

The roid monster is here!!!!

Aiden who is on mega mega doses of prednisone has now for the first time ever since he was an infant, developed the moon face. Infact not only does he have a huge face, but he also looks about 8 months pregnant. He has gained 7 lbs in 2 1/2 weeks. I am in shock at how he looks, but needless to say he looks ADORABLE!

He totally loves having the chunky look. He grabs his belly shakes it like Santa, and tells perfect strangers, "My tummy is FAT!!" Of course I smile and then imagine them thinking, "stop with the twinkies lady!"

The kid though is starving.. He has not stopped eating. The other day he climbed into my cabinent, pulled out the powder sugar and poured it into a cup. He then got out a spoon, and proceeded to hide behind my bedroom door and eat powdered sugar like he had never eaten before. On my anniversary night, Aiden woke up and told Joey and I that he needed a sandwich... Joey made him a sandwich at 1 in the morning and he whimpered himself to sleep wanting a second one.

THEN to top off the starving steriods stories, We had a playdate with some of Aiden's friends on Tuesday. I made a special effort to provide lunch and make all these cute finger sandwiches for the kids. You know, the cute ones with no crust? I made 9 whole sandwiches and cut them in half. Aiden begged and begged to have more. He ate his share, then Mason's share, then thankfully the "extra" share, then since the other kids were swimming and not eating, he started in on their sandwiches. I am thinking he ate all 9 sandiches excluding on 1/2. I begged him to eat the watermellon, and he would take these HUGE bites, with the red juice pouring out of his mouth, and dripping onto his huge round tummy. I couldn't stop laughing. He now looks like Chris Farley or one of those guys from Saturday Night Live, doing the "Da Bears" skits. Just KNAWING on some ribs or turkey leg, chewing, choking, drooling..

Ahhhhhh Steriods.


So it doesn't stop there. The food clearly has gotten out of control, but the moods.... The mooods. Not too much anger, but HELLOOOO emotional. Poor buddy, has been crying over everything. And he KNOWS he sounds ridiculous so he burst out laughing while crying.. It is pretty much how i feel on a daily basis. But seriously, I am ready to have my cute little boy back. The one that fits in size 4 pants and shirts, the one that I can actually carry and pick up. This kid is a tank!

So yes, the roid monster is here, but hopefully gone soon.

In other news, Aiden has been feeling great (aside from the previous 5 paragraphs) he is just looking so good! He has soo much more energy. He is playing and laughing and is very aware of when to lay down. His hands are still changing colors, but we immediatly know to get more fluids in him and lay him flat. I am soooo ready for him to start his home health and get his IV's. I just can't wait for him to be better. I don't care if it isn't a cure, it will make him better in the now, while they figure out how to cure him.

I wanted to update and let you all know how much better Aiden has been, since he was doing so poorly the last week. Yes the steriods are the pits, and the grocery bill has doubled, but to see that smile. To see him skip through the house and laughing his big belly laugh, THAT is all that matters.

We have faith this will be ok. We are gonna get him through this, and I can't wait to share it all with you.

Have a blessed week. Happy Father's day.

Ps/ Kat... you are wonderful!

Love to you
Lisa

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Friday, June 13, 2008 7:45 PM CDT

The roid monster is here!!!!

Aiden who is on mega mega doses of prednisone has now for the first time ever since he was an infant, developed the moon face. Infact not only does he have a huge face, but he also looks about 8 months pregnant. He has gained 7 lbs in 2 1/2 weeks. I am in shock at how he looks, but needless to say he looks ADORABLE!

He totally loves having the chunky look. He grabs his belly shakes it like Santa, and tells perfect strangers, "My tummy is FAT!!" Of course I smile and then imagine them thinking, "stop with the twinkies lady!"

The kid though is starving.. He has not stopped eating. The other day he climbed into my cabinent, pulled out the powder sugar and poured it into a cup. He then got out a spoon, and proceeded to hide behind my bedroom door and eat powdered sugar like he had never eaten before. On my anniversary night, Aiden woke up and told Joey and I that he needed a sandwich... Joey made him a sandwich at 1 in the morning and he whimpered himself to sleep wanting a second one.

THEN to top off the starving steriods stories, We had a playdate with some of Aiden's friends on Tuesday. I made a special effort to provide lunch and make all these cute finger sandwiches for the kids. You know, the cute ones with no crust? I made 9 whole sandwiches and cut them in half. Aiden begged and begged to have more. He ate his share, then Mason's share, then thankfully the "extra" share, then since the other kids were swimming and not eating, he started in on their sandwiches. I am thinking he ate all 9 sandiches excluding on 1/2. I begged him to eat the watermellon, and he would take these HUGE bites, with the red juice pouring out of his mouth, and dripping onto his huge round tummy. I couldn't stop laughing. He now looks like Chris Farley or one of those guys from Saturday Night Live, doing the "Da Bears" skits. Just KNAWING on some ribs or turkey leg, chewing, choking, drooling..

Ahhhhhh Steriods.


So it doesn't stop there. The food clearly has gotten out of control, but the moods.... The mooods. Not too much anger, but HELLOOOO emotional. Poor buddy, has been crying over everything. And he KNOWS he sounds ridiculous so he burst out laughing while crying.. It is pretty much how i feel on a daily basis. But seriously, I am ready to have my cute little boy back. The one that fits in size 4 pants and shirts, the one that I can actually carry and pick up. This kid is a tank!

So yes, the roid monster is here, but hopefully gone soon.

In other news, Aiden has been feeling great (aside from the previous 5 paragraphs) he is just looking so good! He has soo much more energy. He is playing and laughing and is very aware of when to lay down. His hands are still changing colors, but we immediatly know to get more fluids in him and lay him flat. I am soooo ready for him to start his home health and get his IV's. I just can't wait for him to be better. I don't care if it isn't a cure, it will make him better in the now, while they figure out how to cure him.

I wanted to update and let you all know how much better Aiden has been, since he was doing so poorly the last week. Yes the steriods are the pits, and the grocery bill has doubled, but to see that smile. To see him skip through the house and laughing his big belly laugh, THAT is all that matters.

We have faith this will be ok. We are gonna get him through this, and I can't wait to share it all with you.

Have a blessed week. Happy Father's day.

Ps/ Kat... you are wonderful!

Love to you
Lisa

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Monday, June 9, 2008 3:20 PM CDT

This one is for your Joey.....

7 years ago Joey and I were married. I feel like it should be something more like 20 years ago.. but yet it is just 7.

While at my moms the other day she showed me some cute pictures of us getting ready to tie the knot. I scanned them so they aren't the best quality, but I loved looking at them

How fresh faced, stress free do I look! Like a newborn.. joey ironically was the one with the one with the real baby face. I just love it!




It was my graduation from University of Florida, I was so excited to finally finish that semester. I was riding on UF's equestrian team, planning a wedding, working at a vet clinic full time, giving riding lessons part time, leasing a horse (oh Louie I miss you!) and taking 24 credit hours. Yes a complete double load. Had to get special permission. It was finally over, all the stress, my best friend and roomie and I were planning on the next fun events, both of us moving, and my wedding in only weeks.

It was a wonderful time, and frankly I sure do miss some of those lazy days by the pool, painting our nails. Or the times when Kitt and I would travel to horseshows all over the the southeast United states, or camp out in bad weather to watch The gators slay someone in a basketball game. It was wonderful times.

But still, I remember in these pictures what I was ready for.



"alter is next"


I wanted to be a wife. I wanted so bad to have a husband. To be in our home, and go to work. I wanted one day to be a mother, and I wanted it all to begin right then. I was ready. I just didn't know what I would be ready for.


seven years later, I paint my toenails on wobbly toilette seat... my pool is a plastic kiddy pool with duck tape as the plug, cause we can't find the real one.... the only games I stand in line for is my six year old's t ball games, and I am usually standing in line at the concession stand for a ring pop for his very bored brother.... horseshows are a thing of the past but yes we do travel all over the southeast! Just for hospitals. My hair is brittle and fried. My skin is leathery with weird spots all over it. My pant size has increased by 4 sizes. Heck even my once skinny puppy rolex is old, fat and sore....

GEE ALL OF THAT AND IT HAS ONLY BEEN 7 YEARS

seven years of marriage to a man strong enough to hold his baby while still on a ventilator, and look at me with the most loving eyes telling me, no matter what HE will make it all ok.

Being married to Joey has been an adventure..whether it watching him rig our plumbing only to have it explode all over my hardwood floors, or watching him hold Mason for the very first time looking at his own little version of him. Joey is the most caring, selfless, amazing man I know.

I know you don't come to Aiden's website to hear these things... BUT there would be no story of Aiden if there wasn't the love story of Lisa and Joey first. Today, at work, my husband will log onto his son's caringbridge page. On this page he will not read about Aiden or hospitals... today this is for him.

Joey I love you. Thank you for sitting on the bathroom floor while I sit on the wobbly toilette seat painting my nails. Thank you for being rednecky enough to think of duct tape as the great fix of all time. Thank you for coaching every team your son has played on, while I stand in line for ring pops for mason. I love you for not caring about the dry brittle fried hair, the plus size clothes, and the weird spots on my face. I love you because just like we said on our wedding day, 7 years ago.. for better or for worse. Through thick and through thin.

Happy anniversary Joey... the kids and I love you.

XOXOX
Poo bear

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Friday, June 6, 2008 12:52 AM CDT

well excitment on the internet!

In other news...

Aiden has started a new and frightening symptom. we have had two days from hellO but have made it through with no hospital.

God works in mysterious ways

Whoever created that comment was so smart. It is crazy how one day I am telling you all about how my heart is broken about the port and how long term this all has become. Then today I am telling you.. I can't wait for a port! whoo hoo! port party!

after these past two days of watching aiden with new and terrifying symptoms but NOT doing his usual stuff alng side it, it easily sank in to all of us (me and his medical peeps) that a port will bring us so much comfort. He can have more fluids all the time, and no debate whether to admit him. Just do it!

So now me and the port are BFF's.. it is getting down sooner than later.

Why has this change of heart happened you say... well, two days ago with a fever exhaustion, aiden's hands turned purple. They stayed purple and burgandy red on and off for about 8 hours. the finger print area was bubbled up with blood and white and red dots. It is crazy! The pediatrician on call said she had never seen anything like it, it was his circulation.

We have drawn labs every day and they were not good at all but we waited... we laid him flat on his back.to get his cirulation back to normal and it is helped some. He wasn't feeling too terrible and the blood issues woudl come and go. we would lay him down and he would improve, then he would sit up and play and feel silly and then back to the purple hands.

Joey's quote was, "I have never seen anything so strange and horrible looking"

My poor dad had to see it when it was at it's worst. He was visibly shaken. Thankfully today it is normal-ish and he is feeling really good.

It seems with his dysautonomia his blood is pooling in his extrememities. This is obviously getting out of control.

port party instead of the river of tears.....if nothing else I wanna make him feel better.

Thank God for changes in minds and options to make our kids feel better.

Lisa

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Wednesday, June 4, 2008 6:19 AM CDT

I wanted to update breifly. aiden seems to have caught a second wind. He has great energy and just seems better to me. all of his best friends are finally done with kindergarten, and out for the summer. He hasn't stopped smiling since. Yesterday I felt so wonderful having some of his little friends over. I was smiling just as wide as he was. The homeschooling year has been lonely for aiden.
Today he is going to a pool party with some of his old play group buddies, and we all can't wait.

There has been some very special music updated on the site, Get the tissues out and take a listen. He's my son.. by Mark shultz gives me goosebumps and has brought me so much needed relief hearing it over the years. Haley's mom sent it to me 5 years ago on a cd and now it plays, being the words of this website. It is how we feel exactly.

Yesterday my friend cheryl gave me the greatest gift I could have ever gotten as a mother. Not only did she call me at the crack of dawn to check on us, (which is a miracle in itself) but we talked about what Joey and I should do as aiden's mommy and daddy. What questions should we ask, since all the doctors have made it so clear there is no cure for aiden's problem. Just more medicine hoping to catch some of this.

aiden's autonomic dysfunction isn't like the most typical kinds, although they have so much in common as well. For some terrible reason, aiden's dysautonomia is and can cause his organs to fail and have damage. We saw a few years back with no fluids after an episode, him actually go into acute renal failure in only 24 hours. Now we know better how much fluids he needs in an episode.

I was talking to a friend last night, she is a nurse and works in a children's hospital. she said, "most people don't understand how big if a deal him getting a port is." I told her why to me it was so different this time than in the past with other lines.

at this time, aiden's port will be indefinite. It isn't to run antibiotics, or infuse temporary medicine. Until we can get some other amazing idea figured out, this is how we are going to be for a long time. Just waiting for a cure or some other options.

Last night I stayed up till 2 in the morning, trying so hard to not lay my head on my pillow and hear the thoughts swirl in my mind. Once my eyes closed and my mind clear, I heard it over and over, "why has this happened to him... why is this happening... what are we going to do..."

I closed my eyes and fell asleep praying. I asked God to take away the fear and give us peace. Give us patience for this new leg of the journey. Laying there it came. I couldn't believe it! call it exhaustion, but a moment came to me where I remembered a valuable lesson I used to tell myself when things were tough over the years.

Give us this day our DAILY bread.

God wants us only to have the daily bread... we don't need the bread for tomorrow or the bread for the next months. Just like in the old testiment stories, when they people prayed for their manna from heaven God instructed them to only get the bread they needed for that day. If they looked to the future because they were worried about what would come, and grabbed more bread than they needed, it would spoil.

This morning I woke up feeling revived remembering i can't worry about how long and why we have this port.. I can only be greatful that when he gets the home therapy it will be his daily bread. It will be what he needs to have that day be good. and that is all we have to think about.

Today, I will wake my little ones, get them ready for their pool party, and thank God for the peace He did lay on my heart.

Feeling revived and ready for the more of this journey

Lisa

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Monday, June 2, 2008 6:24 AM CDT

LOOONG ONE.. warning..

The telethon was on this weekend. I always tend to forget to not watch. Of course after spending the evening hanging out with my mom, talking all about Aiden and everything that they are doing to help him, I was so emotionally spent I just wanted to go home and go to bed. It was late in the night, I turn the TV on and see the telethon. Ouch.

I tried explaining how painful this is for me to see the telethon to a few people in the past no one ever gets it. But since this is MY page I am gonna talk about it till the cows come home and I don't care if it makes people uncomfortable or makes me "less fun" to be with.

Once apon a time I was on a treadmill in a Gym,(don't gasp.. I know this is shocking.. it was a LONG time ago) with my mom. We both had our ear phones on watching a children's Miracle Network telethon. Aiden was about 4 months old, we already were diagnosed, had the Kasai but he was doing ok. It was our calm month. I was walking next to her, watching these moms cry and beg people to understand how painful it was to endure you child suffering from XYZ disease. I look at my mom and I see her crying big tears as she walked along. My hands started to shake...It hit me.. it just hit me that very very moment.

I was now them.

I was the moms crying and begging for someone to understand.

How on EARTH Did that happen!? How did my life become a sad story? (bear with me people this gets better.. I was in the midst of accepting the diagnosis) We always had joked for my whole life, I had the "charmed life" Rode horses, was a good girl, cheerleader, good student, lucky in love with my Joey (whom also had a charmed life as well), happy go lucky, just life was good!

NOW.. I was the mom on TV crying about my sick kid? It was sureal. I didn't WANT that! I didn't WANT to be sad! I didn't WANT to accept the fact that things had gone from being neat and pretty with a big pink bow on top.. to an exhausting, terrifying lump of crap. No bow. Just crap.

I went home and told joey my discovery. I told him that Aiden was so sick that he could be on TV! (still bear with me)

He didn't get it. (Joey was in the real-deal-denial and was planning Aiden's private baseball training for when he turned 7 months. )

I told him that this whole "Biliary Atresia thing" was bad! It just hit me.. we could acutally have to keep going back to hospitals! Aiden could actually need a liver transplant! Didn't he get it?

-- don't you hate it when you are reading something along side someone and you turn the page faster, but the other person says, "I am not THERE yet!" and makes you sit and read that same last paragraph for 2 minutes while THEY catch up?

So a telethon was HOW I accepted, heck how I even realized that this whole liver thing was a BIG deal. Not just a scary deal.. but a VERY VERY BIG DEAL.

Years go by... Aiden is transplanted.. there is NO more denial, Joey and i get it. The year AFTER transplant we spend 200 days in the hospital and away from home. It feels ok. I am actually very happy. Aiden was transplanted, he was alive, he was our miracle. I didn't care if we lived on the side of the road, I was so darn happy to have this life.

OK not really. I just wouldn't allow myself to feel anything else..... well until one day I watched another telethon. We were in All children's Hospital sitting with all the excitement of the local telethon and I sat and watched. it had been about 7 months since I had shed a tear. Not one tear for me and Joey or Aiden.. I was in transplant mommy mode and there was no time for crying.

Until the telethon cameras circled the floor and it hit me. I was a telethon mom, and I was ...proud! Where did the young mom go that saw it as a big pile of crap? Now I was an advocate, the mom of a miracle, thankful to just be a mom. And it hit me how even though I never knew it was happening God had changed my heart, and showed me that even in the strangest places, with the most painful terrible events, we can change our perspective.

I remember Aiden was in his crib I made his little hand wave at the camera as it looked at him. I don't even think it aired, but My heart swelled with pride. I wanted to hug all the other mom's necks that were the parents of children who were the spokeskids that year. I wanted to tell them, that even though I never wanted to be in their club, I was so thankful we were there with so many amazing children. Determined, resiliant, strong, brave and frankly just a little cuter. (bias I know)

Now the telethon was the only way I woudl cry. I would call Cheryl (Haley's mom) and tell her, "I haven't cried in almost a year. I know that is not normal... but when I watched the telethon I cried so hard for those other children. Not for me.. but others. It seemed safer and easier." Cheryl's reply: "Oh yeah we do that all the time here. We watch things that make us cry so we don't have to cry over us."

Wow.. she got it.

SO more time went by and Aiden was SOO healthy. It was his 2 year old year. Oh if you could have seen him back then! He could eat every food he wanted! Only allergic to milk. He didn't spend ONE night in a hospital for the whole year. It was Heaven. But then he turned three, and we have never looked back. When Aiden started getting out of control with his anaphylaxises had a massive rejection, and then in the fall of his 3 year old year Aiden looked at me early one morning and collapsed. His first dysautonmic episode. (we just didn't know it back then) Aiden was sick. He was getting bone marrow biopsies, IV fluids, high boluses of steriods, ambulance rides... and our happy healthy year was gone.

Now... the annual telethon is a reminder to me that this is getting exhausting. Two more telethons come on and I realize now I need to ban them... I am angry, I am hurt, I am sad, I am just not ready to accept we were there again.

So Saturday night, Just only days ago, when I stayed up in the late hours sobbing into my towel... the telethon was only a reminder of how much of a marathon this is. A looongg marathon. One that I am thankful to run because others don't have the chance to with their children, but man lets face it... it is a lonely race. It sucks too. I am tired and just need to get that cool glass of water and get a breather.

Last week I wrote about how his port saddens me because it reminds me how sick he has become. Lets just face it. He IS sick. This is NOT normal. This is NOT good. He looks bad, he can't barely function in the heat. He is in and out of the hospital, things are not good. Each visit we add more medicine, and the medicines just make us add more. One to control his heart rate, one to control his blood pressure, one to control how much fluid he looses, one to control his kidneys. Medications so he won't reject, medications so his allergies don't get out of control again, medicines to heal his GI tract that is torn up and eaten up by his own White blood cells. Medicine for the medicine. He is geting a port, he is getting a heart monitor placed under his skin. He might be getting a pace maker...

Aiden IS sick.

SO why am I the last to get the memo? Why am I the one who isn't turning the page? The one who is slowest to read the words? Why does it take a telethon every darn year to teach me yet another lesson? Why is Aiden sick? Why is he worse?

I don't know the answers. It just is this way. I cried my tears, yes for the other children on the telethon... but this weekend.. I have cried my tears for Aiden too.

It is a step towards some acceptance. I am no longer doing the little "finger quotes" each time I say he has a systemic form of dysautonomia. I am no longer wondering if the port is the best for him. I am defeated to the worries and the control.. now I can only just get on my face and beg God to heal him. An earthly healing. I can only beg God to make my little boy better. Please God let us not exhaust all these medicines and monitors and tests with no anwers. Please God just make him better.

I am so thankful for our doctors and hospitals.. but to me God is the ultimate Healer and decider of our race. Pray with us for Aiden. Pray for all these little ones who weren't given a fair shake.

And if you have any extra prayers... pray for their parents who just don't ever know how to feel.

Lisa

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Thursday, May 29, 2008 12:36 AM CDT

HOME

We are home.

Aiden is feeling ok. We are planning on resting today excluding the one trip to the dollar store for a prize for being so good.

We have had so much happen on this trip I never expected. Just weird stuff. So many difficult choices, and discussions, all the with topic of "quality of life".

My heart is really just heavy and I am worried about Aiden. It is all probably because of so many decisions being made about medications, and changes, and ports and stuff. Sprinkle on some exhaustion, and crankiness.. I just am ready to crawl in a hole.

We will have a consult with the surgeon about Aiden's new port, then we will do it on our next admission. Not before then. SO it could potentially be asap or in months. But the next IV he gets will likely be the last for a while until his port is placed.

With out getting into my long descriptive speech about why this breaks my heart, let me just say, the emotional issue I have with the port isn't about so much the risk of infection (all though that is paralyzing me with fear)... it is more to me about the statement it makes. Dumb I know.. but you aren't me. I have mastered denial and am a stubborn stubborn person.

It is simple:

Port = sick

Port= a step backwards

You see, even though this is our reality:

We have been admitted to the hospital 12 times in 6 months, and even though Aiden currently is taking 22 doses of medications a day, and even though he doesn't go to school, and can't eat food normally, to me....

that is not what I see.

This is what I CHOOSE to have as our reality:

We have a vacation home we like to frequent 12 times out of 6 months. The maid service is exceptional, the food not so good. Aiden maybe take 22 does of medicine a day, but that is minus cellcept and that is always a good thing! Although he can't go to school, I get to homeschool him... and him and I have shared the joy of learning how to read together. (I knew how.. he was the learner) I wouldn't replace that for anything in the world! And yes even though he can't eat but a few food items, I see how easy it is to heat up dinner for a kid when their olny meal is chicken nuggets!

Ok so that is a stretch.. But the port.. we have already done that. Moved on. Aiden had one for 15 1/2 months from the age of 6 months to almost 2 years of age. Looking at my boy with another port just makes me feel like... we took a step backwards.

You can tell me to not see it that way. BUT I have to feel these emotions.

Having nurses come to your home, setting up IV's in your 6 year old's bedroom, in between the bunk beds and the train table, KNOWING it isn't for antibiotics or short term. KNOWING this is for long term, it is hard. I have been here before. This isn't my first rodeo. I just didn't want to accept that we were back in the rodeo business.

Anyway.... even though this all isn't going the way I want it, or the way I have asked and prayed to God for it to go, I am quickly reminded that God loves Aiden so much, and he loves me too.

Today, leaving the hospital we had the most heart stopping reminder that no matter what God is with us, and so is a very special angel. With bags packed, and my little boy climbing in to his grandpa's truck, The student nurse who walked us to the car shared something with me. Never having met her before and not even catching her name she says:

"Hey you know, my husband and I have picked out the name for our baby." She says as she is helping me unload the wagon.

"Aww, oh yeah? What is the name you chose?" I say

"If it is a boy we are naming him Aiden." She was smiling and looking at Aiden.

I grinned thinking about how I hade never met her before and how she was sharing me something special we had in common. "What are you naming the baby if it is a girl?"

"If our baby is a girl, we are naming her Haley."

I stopped. I actually felt the burning of the tears on my eye lids. I stood there and said, "I don't even know if you know what you just said, but you just gave me a message from God."

She doesn't know us from Adam. She Never heard of Haley... but our God knew. A message to me, that He is near.

I climbed into the truck, my dad heard it all, he was just shocked and thanking God for that sweet moment. And I felt suddenly different. You know what? It is ok. It is ok to be DEVASTATED that Aiden is living this hell. BUT no matter what, God loves Aiden. He loves Haley, He loves me, He loves all of us...... No matter what it will be ok.

Anyway, I am off to cuddle the boys and shed a few more tears.

God bless and thank you for your prayers.

Lisa

I am looking forward to my spunky super hero getting his energy back! Here is a photo of Aiden, Spencer, Mason and yes even rolex dressed up as super heros just days ago.

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Wednesday, May 28, 2008 5:34 PM CDT

The second verse is the same as the first.



I have aprox 2 minutes to type an update. Here it goes. He is the same. I am acutally thinking that maybe even a tad worse. I am shocked because this is a tad different the his previous "dysautonomic crisis's" Yes that is the term we are using crisis. Gee that doesn't make me feel a tad more panicked than my previous term "Aiden is doin his Thing"

Anyway, so more fluids more time, more labs, more wait.

We have had the most Divinly strange admission. God has been all up and Down this one. From his old GI to his Neprhologist all have come in to speak to us and NEITHER has been consulted. They just came. (if you are a hospital mom you understand why I was searching the sky for the second coming wink wink)

Dr. Flores (other wise known as handsome- never have a hair out of place - nephrologist) Decided to place Aiden on Clomidine? We won't take that until his dysautonomic doctors and transplant team agree, but he feels strongly it may be a helpful option that the beta blockers could have provided. (so yes you read right miracle number 1: Local doctor sees Aiden with no consult, FINDS a medication to potentially help Aiden, and then agrees to wait till others all agree as well.... all while looking handsome with perfect hair.)

Secondly Aiden's GI hears were are here yet again 12th admission in 6 months? and comes in and starts making some suggestions and offers help. Adding a comment that he in all his years of his work only having ONE child with dysautonomic problems and that child had spinal issues. (miracle number 2: Local doc sees Aiden with no consult, offers help, and previous experience)

THIRDLY I call and speak to Cincinnati and after all the nurses, pediatrician peeps and local specialists that weren't consulted agree it is time for a port.

SIgh.. breath Lisa breath Lisa...

So the port is a go. I don't know when Maybe as early as tomorrow if they can schedule the surgery, or next week if not. In any case the deal is done.. a port will be Aiden's new best friend and his life line. (more emotional commentation on this later)

Lastly, The video game nurse not only has been in our room more times than I can count, she also has brought in little doll to show Aiden all about Ports and IV access. Our nurses are all our favorites and God has his hands on my boy.

Things seem to be worse over all for Aiden and this stupid awful terrible awful disorder/ disease/ affliction/ doo dad. But I am resting in the comfort of how much God has divinely stepped in.

I thank you for your prayers. I just thank you for the comments on the guestbook. Thank you so much for not ever thinking that this is easy because this really is the second verse the same as the first. Thank you for supporting our family. I feel so needy right now, and I am so thankful you are there.

We love you and are asking for more prayers.

Love Lisa

---

Tuesday, May 27, 2008 11:23 AM CDT

Darn it... Aiden is getting admitted. He actually ASKED to be admitted and get his IV's. He sat there with eyes rolling every time he blinks, "Just give me and IV it always works"

I won't be able to update cause the cord on the laptop is not working. But hopefully we will be out soon.

Off to the Spa- ala- Hospital
Lisa



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Weekend Warriors!

Home improvement story number 106

When we bought this home we thought we would be married for several years with no children and could do all of these things in the first year. Of course the story was written a tad different, I got preggers during our first summer here, and the rest was history. After Aiden was born the saws stopped buzzing and the hammers put down. We had more important things to do. I remember stepping over plywood scraps and crowbars carrying my newborn Aiden.

But even with all the hospital admissions, and weeks and months away from home we have done so much. I must confess my track record actually speaks for itself. It is usually BECAUSE of the hospital admissions and illness that I get a whim to work on the house. I remember when Aiden was transplanted and we had to stay in Atlanta for 4 months after his transplant, the WEEK I got home I had painted my entire interior, hung photos, and started making curtains. Every inch was copied from the professionally decorated Mason House where we stayed, of course low budget. But I was SO sick of the old. I wanted so bad to have a new life to come home to.

I remember there was this spot on my wall. It was there for about one year. It was a footprint. We had those flat painted walls that collected every smudge and every mark. So the foot print in my hallway just stayed there no matter how much I scrubbed it. It was a reminder of my first freak out moment I had after my baby was diagnosed. I was hysterical and tried my best to kick the wall. There that terrible memory just sat glaring at me reminding me of the pain we have felt. Needless to say when we came home after transplant, and I grabbed my new favorite sage green paint, IT was the first spot I covered.

Time and time again we are admitted or Aiden has to go through testing and I come home and do something.. something to make it feel even more like home. Even more wonderful than before. (or just better than the stupid hospital)

So that leads me to this weekend.

The drive home from Cincinnati is LONG. The boredom can really strike somewhere between uhhh Kentucky and uhhhh Florida. Sometimes I find myself sitting cramming my hips in between two car seats just to watch Elmo for some desperate form of entertainment. Usually though, Joey and I ride just talking or if we are lucky enough we will find a good country station where they play the old country songs. (Nothing makes me howl louder than some good ole Crystal Gale!)

This ride home I sat with the back of some random envelope and a pen and sketched out our new project. Of course with a budget of ZERO it is demolition. And trust me folks, when I say we have room for demolition… we do.

There is a secret place that no man has gone before.

The land of the unknown…

or should I call it ..
“Joey’s side of the fence”

My darling husband has a little Sanford and Son in him. Ok a LOT of Sanford and Son. And I am fed up. I was forced to venture to “his side of the fence” after the yard sale and that was it. The whole time in Cincy I knew it was the last time I would go over to the ‘realm of the unknown’ again. Not until it was knocked down, and cleaned out.

SO that is what we did! All of us. (ok 92oey) knocked down the old nasty rusted and scary, teetering ole carport.




Here is the carport, cleaned out ready to be demolished. Note the white beam in the center of it.. HOLDING IT UP!!



THIS Is MY side of the yard... You can almost smell the flowers, the hear the little tweeting birds.





Joey took each peice down, Sawed the old rust poles in half, sorted the recyclable tin, and the rusty trash... while I "sat and looked pretty" as he called it.



Aiden was fortunate enough to 'sit and look cute'



While Mason was helping the as the project manager.




My hard workin-man decided that three days of hard labor wasn't enough so he climbed a ladder and trimmed our palm trees too. Ladies he is taken! :D


OK so back to the broken down non useable carport:

That sucker was held up by some 4 x 4 Joey found in “his side of the yard” and some confederate Jasmine. We sawed, and sorted, and raked, and cut… and finally… “His side of the yard” is starting to look like OUR side of the yard.

I am really excited. We have some old picket fence my mom gave us from one of her properties, and we have several panels of fence left over from our yard. Eventually on our budget of zero Joey and I will dig up the existing posts where the fence is now, and move it to expand out the yard.

And all of God’s Children said, AMEN!

All of this because Aiden was scoped and I had a little too much thinking time on my hands. (Of course we have planned this now for 7 years, but hey when your kid is sick and life is so crazy things don’t get done.) The weekend warrior has struck again and we are so happy with our (Joey’s) hard work.


In other news.. Aiden isn’t feeling so good.

He is all red faced and veiny. His blood pressure is hanging in the 130/90’s so extra norvasc (blood pressure medication) for him today. The 45 mgs of prednisone has not made any difference in the 10 poops a day and the pain in his tummy. BUT it has created a lovely whiney crying hungry emotional 6 year old. Only 10 more days on this dose unless we see no improvements. After speaking to Aiden's Pedi we are gonna split the dose 22.5 in the AM and 22.5 in the PM. Maybe the steriods being so high in the AM is making him bottom out. We will see.

Aiden also has had a cough since he was in Cinci that comes and goes but I am biting the bullet and making him get listened to this afternoon. I am sure it is just all this allergy drama but since it has lingered for two weeks it is time to see his pedi.

ALSO!

Allergy tests are in... trying to figure them out and figure out what food might be triggering this eosinophillic disease I am stumped. We will eliminate Bananna for sure, but over all they looked good .. Good mainly because he has a new class 0; a new negative food! APPLES! YAY So Grapes and Apples are his ONLY negative foods! WHOOT WHOOT!

However compared to his levels run in the fall in Cincinnati most everything is up.That is NOT a surprise because he is "flaring". A lot of time with the RAST you can have falsely elevated levels because of the high level of the IgE in your system. I have to look at the big picture... overall they have come down sooo much compared to when he was younger. I am still so hopeful.. and infact even more hopeful that our upcoming wean from prograf will help elminate some of the allergy craziness.

He came back a class 2 to all of the environmental allergies but since we never test him for that in the past who knows if that is up or down. At this point, what are we gonna do? He is on every medicine known to the allergy world. And I am not gonna lock him in a closet so.. what ever!

Anyway.... Lets see if the steriods help this and maybe we can keep his limited diet just the way it is. Praying!

Have a wonderful week…

Prayers for Babu (Joey’s dad) he is sick in the hospital again. We love you Babu!

XOXOX
Lisa

---

Wednesday, May 21, 2008 2:17 PM CDT

OH

My

WORD


Not often I am semi speechless. Ok, so I am not speechless at all, but shocked at the call I got today from Cincy. Our lovely (love her) coordninator called me with Aiden's pathology from his scope.

We knew from the scope itself that Aiden's esophogus was lined with eosinophils. You could see that it looked terrible. Like someone sprinkled snow or salt all over his esophogus. OUCH. We even suspected it to have eos in his small intestine... but you are never positive until you get the biopsy results back. I was shocked to hear that the results showed in every biopsy they took through the entire GI tract Aiden had terrible eosinophillic disease! He had eosinphillic esophogitis, eosinophillic gasterointeritis, and eosinophillic colitis. They found eosinophils from his little rectum to his throat. EVERYWHERE! I just can't beleive the severity of it.

OK so my friend told me yesterday, "Lisa we need to have dinner because I have no idea half of the stuff you are talking about on your website" Soooo In light of that and because I can't afford to take everyone who is reading this to dinner, I will explain what on earth this all means.

BASICALLY...

The eosinophil or eos (because lets face it, that is torture to type) Is a special type of white blood cell. It is responsible for attacking foriegn things in our body and killing it. Parasites, and bacterias are it's favorite. For some reason Aiden's immune system is telling his eos to attack his own body. (Autoimmune.) And Aiden's eos are attacking his entire GI tract. This naughty behavior from the eos is obviously NOT ok. The only thing the doctors really can do to put the disease back into remission, is stop the trigger... (usually food) and add steriods. Ahhh do you see a theme here? STERIODS

So they are of right now, starting Aiden on more prednisone. A whopping dose of 45 mgs for the next two weeks. If he hasn't resolved his incontience and "symptoms" then we will keep going on that amount, and possibly more crazy things.

This leads me into situaton number two. This disease is supposed to be painful. Imagine heartburn times 100. ALL UP AN DOWN even when you poop. I know Aiden has been walking funny sometimes, actually limping, he does scream out in his sleep with terrible stomach pains, and he does have some gagging and vommitting when he eats. But over all... HE DOES NOT tell me he is in pain. Even if he is limping and bleeding from his bottom he screams at me, "I am FINE!" So, it is hard to tell with him. He is so much like Haley in this way... He is a tough kid, never complains, always smiling, always laughing and making others laugh.. I never know how much he hurts.

Sooooooo... 45 mgs of prednisone... I am changing the song on the site. You are now listening to one of Haley's Hits. This is her song Prednisone. Prednisone makes you kind of crazy, and very hungry, and of course really moody. But it also saves lives, so whatcha gonna do?

So that is the latest drama from the Hawk House. Labs in the morning, and more allergy testing tomorrow as well! Wish us luck.

God bless!
Lisa

Ps/ please say a special prayer for two of our dear friends.
visit:
www.caringbridge.org/visit/dickklemann

and also Ms. Kathy O'Niel, we are praying for you as well.

---

Saturday, May 17, 2008 9:36 AM CDT

Still so excited about all to come for Aiden. Even if it doesn't work it is a chance that we have to help Aiden have a better quality of life. I know so many people don't understand what I mean about a quality of life. But take my word there is so much everyday he can not do. School, resturants, go to his friends for sleepovers, summer camps, play in the heat like every other kid in the summer, go to ball games with daddy, and other things that I don't want to list. It is weird how the chance of him being able to do normal things his friends do makes me so aware of how different he is. I am just trying so hard to not be jealous for him and trying so hard to just focus on the joy. But sometimes I just want to know WHY HIM! Why did HE have to be born sick?

Focus on the joy.

The last two weeks have been a rollercoaster. I haven't really sat to think yet. My heart is full of hope for Aiden. Maybe something I had kind of lost a little. Mom's with kids who are chronically ill understand that sometimes the roller coaster is just to painful to ride. Sometimes it is easier to accept that our ride is broken, that our ride isn't the same happy silly ride all the other kids get to be on. The acceptance is easier because it hurts less than having hopes dashed and being shocked when things go bad. Just accept that we live day to day and it just IS easier. But now here I am back on the rollercoaster, riding parellel to another coaster with a healthy pain free life. My ride dips up and down and the darn cushions for the head rest seem to be worn out and painful. The other ride seems to be like Winnie The Poohs kiddy ride. WHeeeeeeee! And I want on it soooooo bad.

I want Aiden to be on it soooo bad.

Does this make sense? Acceptance, or sometimes I call it my denial, is just easier. But hearing that we have this tiny hope for a new life for Aiden makes me ache and yearn for it more than I ever had. And even though it is hard... I would rather anyday of the week have a glimmer of hope than feel resigned to defeat.

Focus on the Joy with me. We are so blessed. God has been so good and merciful. The tears I cry of jealousy and fear of not what He wants for me. I am to focus my sight on the good.

And folks THIS Is the good:




Aiden says, This Cellcept is GOING DOWN!!!!



DOWN THE TOILETTE!!


Dear Aiden,

How you amaze me. Your kindness and loyatly for your friends. The smiles you still offer even after so much pain. You have taught me to not focus on the label of that bottle the warnings and complications it brought, but to laugh and dance that we get to finally dump it where it belongs. I am so sorry you have to have a difficult life. I am so sorry that it isn't fair. Mommy and Daddy have fought for you to have the most you can. We will go to the edges of the Earth for you. I wouldn't trade one moment of our time together, just having you in my life has taught me so much, and brought me so much joy.

Thank you Aiden for reminding me how to focus on the Joy. I love you with every breath, all the way as big as the sky. We will win this battle buddy. I just know it.

Love You baby Waby

---

Wednesday, May 14, 2008 7:54 AM CDT

VICTORY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My charger on the lap top isn't working, so i can't update with the photos I have, but none the less I am thrilled to share this update with all of you who have prayed for my boy over the years. With tears streaming down my face.. I actually want to get this right. This will be an update I know I will go back and read for years to come, and I want to make sure it tells the story of how important yesterday was.

We saw the cardiologist. Dr. Knilians, whom is the director of cardiolgy and EP at Cincinnati Children's. (for all you med students check your text books- he is the author of many) He confirmed the diagnosis of dystautomia. He not only confirmed it, but also didn't really get why the St. Pete cardiologists had a problem with the stuff Dr. Grubb asked them to do. A stress test, and the heart monitor. So during our appointment he said, "Why don't you go do a stress test now? I will get you in." Uhh OK!

I have hilarious pictures of that to come. so I won't go further into explaination... but basically after cardio we have made a plan. All of Aiden's cardiac problems are secondary to his dysautonomia. So that means his brain is telling his organs to not work properly. (not good) Instead of maybe having a defect we missed. Since this is the case we are doing more flourinef to increase his blood volume, and watching him until his next episode. I told the doctor of my new theory that it only happens in the fall and winter and he actually AGREED with me.. even with my husband making jokes and saying how it doesn't get cold in florida. He said Aiden can not regulate his tempature and that it causes the heartrate to drop dangerously low. The first sign of this syncope puking disater he does, we will implant his heart monitor under his skin. he has different problems in the summer. he core tempature rises, heat exhaustion, no sweating, etc... so we will be doing some different therapy for that. IF his heart monitor is showing some dangerous dips in the Heart rate.. (we saw it dip into the high 30's under anesthesia and they had to give medicine to keep it up) we will do a pace maker on Aiden. This is good news to me.. I will finally sleep soundly.

OK sooo not only did he confirm everything Grubb said, but he will be our main cardiologist along side of Grubb. Praise God!

But all of that isn't the good news. Infact that was amazing news but doesn't touch what I am about to tell you.. (this is where the tears come a flowing)

Yesterday morning my son Aiden took his final and last dose of cellcept! NO MORE CELLCEPT! The liver team dropped it since he is on an ungodly amount of immunesupression. All of these drugs at these toxic levels that he was on are making is body a wreck! NO MORE CELLCEPT! Cellcept is in a chemo catagory it is a nasty drug to be on for so long and at a maximum dose. At only 47 pounds he was on 350 mg twice a day. NO MORE

I have all these adorbale pictures of Aiden dumping it down the toilette. he even made up his own dance called the GOOD BYE CELLCEPT dance. We sang and danced and I was SOOOOOOOO happy for him.

BUT still this isn't the amazing news...

In

six

months

Aiden

will

begin

his

wean

from

PROGRAF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


No more prograf. They are going to try to get him off of prograf. This has been three years in the making. Three years of begging and pleading, and then changing teams. And now.. it will happen. BUT not because of the life threatening allergies.. but because they believe the years he was ran at toxic levels of prograf, has caused a neurotoxicity and possibly this God Awful dysautonomia.

There is a chance, my sweet friends, that my son will get off prograf.. and a chance a small tiny wonderful chance... that not only will he be relieved from this terrible neurological/ cardiac disease, but also from food allergies.

EVEN if it fails.... we have HOPE!


I am mess ... If only you knew how many times I have prayed for this day to come. Just a chance for this. And imagine that.. I had no idea it was coming. I didn't ask, I didn't mention it.. I never said one word... It was their idea. And they are very confident in it.

(If you are new to my site, and have a good cup of coffee and some time, you may want to check my journal history on this one... It has been a long time coming)

Thank you for praying. THANK YOU!

Aiden thanks you.

Mark it on your calenders YESTERDAY May 13th was a wonderful day for our little lionheart.

---

Monday, May 12, 2008 9:33 PM CDT

Thankfully that is over.

As we were heading to the hospital Aiden yelled to us, "THIS IS TORTURE!! I AM HUNGRY!" I am so glad to say that now finally after 48 hours with nothing to eat, Aiden has a fully tummy.

We spent a long time waiting for the scope.



It started much later than it was scheduled because of the difficulty we have with anesthesia with Aiden. The three classic anesthesias used on children are not ok with Aiden. ANd this leaves for a very concerned anesthiasologist. At one point our GI came in and said, "I heard we have a hold up with the anesthia people I just wanted to see if you had any questions." I thought to myself, hey at least they are doing something, Our local hospital gets so nervous they just say no.

SO we explain to Aiden that he needed to breath into a mask and it would help him sleep..OK so just like the CT scans Aiden has an irrational fear of things on his face/ nose. Mainly from the years with NG tubes. Once he was wheeled into the OR they show him the mask and he goes ballistic. He starts screaming NO NO NO MASK! The anesthesiologist asks Aiden, "well Buddy my only other choice to start an IV."

And this will show you just how serious I am when I tell you the kid doesn't like masks...

He says OK! He would rather be poked with an IV with no numbing creme than breath into a simple mask. SO... we get the pentabarb and they find his vein and poke him with an IV. Aiden is crying, but still screaming to keep the mask away. I am just horrified. Then.. the IV blows. UGH

The doctor tells my crying Aiden, "I have to start another IV or just try the mask." Aiden then just looses it completely. I look at the doctor and just make the decision... it was time. Hold him down and just get this over with. Since he is my child, I get the honors of laying across his chest, as the grasp his cheeks, hold his arms down and then hold the gas over his mouth. Bless his little heart.. he held his breath. He would gag and scream and then just clamp his lips down. I just tried to sing my lovie song but he couldn't even hear me.

He was out in just a minute and I left feeling like garbage. They all tried so hard to make it easy on him, but it isn't ever easy.

The scope was very fast, and we met with Dr. Yazigi to discuss what they saw. Just as I suspected.. Aiden's eosphogus and possibly the lower GI tract were covered with eosinophils. Aiden's eos disease was back and it looked way worse to me in the photos than ever before.

The good news about this is that we are at the MECCA of the eosinophillic gasterointeritis... Cincinnati Children's is a world leader in this field and the main reason we came to this hospital. We will tweak his meds and and a different type of steriod, and also check his diet. Poor little guy, I know it is unbearable.

So, that is that. After two years of this disease being in remission, it is back. It can go away though with the right diet, and medications. I have lived this road before, it doesn't really scare me. Nor does it suprise me.


Aiden woke from the procedure very well.. he was such a tropper and even let me take some photos for the scrapbook.







Tomorrow morning we will see the Director of Electrophysiology at the hospital. Fancy Shamncy. And discuss the dysautonomia.

I will say, the way they treat his autonomic dysfunction is just so sureal to me. They were even very careful about how long the band on his arm was there. I was so impressed with how they took such good care of Aiden, even if it was difficult to watch.

After a trip to Toys R Us




Aiden in the shopping cart at Toys r us



Joey and Mason goofing off

The boys are nestled in their beds comfy. Mason feels all better thankfully. I will update tomorrow.. Hugs to you all. Thank you so much for the notes in the guestbook. I find myself checking it about 50 times a day.

Love to you all
Lisa the Team Mom

Ps/ thank you Kat for the song... No matter what comes his way, what storms rage around my baby He will be safe in my arms.

---

Monday AM

Top 10 signs you are having a bad flight (revised)

1)before getting on the flight you see the weather alerts and hear a man say, "not a good day for air travel through the midwest"

2) the woman next to you is hiding under a blanket.. and not until it is over do you even once see her face

3) After taking off in the pouring rain, your pilot annouces to the crew to not only stop serving drinks but to fasten their seatbelts.

4) Although it is only 8:30 AM you (me) and multiple other passengers order small bottles of vodka before the flight attendants bukle up

5) You learn that rocking back and forth in your seat, after having vodka at 8:00 AM, makes it a little harder to tell if we are spinning out of control.

6) When you six year old dare devil annouces to the seat behind him, "My mom's freaking out! But this is FUN!!! WAHHHOOOOOO!!!!"

7) Even though the pilot has already told us during the duration of our flight we will not take of the fasten seatbelt sign, he still feels it neccesary to push the little button through the major turbulance over and over again... DING DING DING fasten your seatbelt!

8) Now you have joined the lady hiding under her blanket and hide under your People Magazine

9) The magazine is on your face for so long, when you peel it off you have Britney Spears stuck to your cheek.

and the final top reason you KNOW you will never willingly fly again...

10) Apon landing (in a massive storm)you realize your right wing is about to hit the ground. You skid all over and then the flight attenedant who is obviously thrilled to be on dry landing, says, "WOW WHAT A LANDING! LETS GIVE IT TO OUR CAPTAIN FOR THAT LANDING!"

and everyone on the entire plane cheers and claps loudly.


Yep, it has been the beginning of a Hawk Family traveling adventure. Mason is sick and vommiting... Aiden hasn't eaten one drop of food since Saturday night because of his testing, and I am reminded of that uhhhh about every 4 minutes. Looking out of the hotel window it looks like a beautiful sunny day, to which we won't be enjoying because little Mason feels so bad, and then Aiden and I will be going to the hospital.

we did buy Aiden and Mason a new DVD and it seems to really be good, so we will be enjoying a nice cuddly day at the Comfort Inn. I will update with news from the scope. Send out a prayer or two...

I can't wait to show you all the homemade Mothers day card the boys made me on the airplane... yes it was made out of a barf bag... but I will cherrish it always.

Lots of Love
Lisa XOXOX



previous update

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

THE FUNRDAISER WAS A WONDERFUL SUCCESS!

I am soooooo shocked and excited! We made almost $2,300 at the garage sale!

TWO THOUSAND THREE HUNDRED!!!

Just in the knick of time! We fly out tomorrow for Cinci.

OK I just have to thank everyone who donated items to the sale! So many people! I couldn't list all their names but you know how greatful we are! Also those who donated baked goods, thank you so much as well! we feel so blessed!

A very special thank you to Michelle, Nicole, Jennifer, My daddy, Danielle, Lynne, and Kelly for all your super hard work wheeling and dealing! YOU GUYS ARE ANGELS! We even had a precious lady from our church sign up and bring us all an amazing lunch from Subway!

I can't tell you how much I cried over the past two days. Today mainly was very emotional. SO many people cared to hear the story about how just getting a liver doesn't mean you are better. Multiple people came and prayed with us and Aiden, it was so touching to see that type of humanity and love from our neighbor.

SO now we have a way to pay for the plane tickets by ourselves and also the car rental and the gas and food home. Praise God! YAY

SO our flight leaves at SIX A.M.!!! 6:00 AM. Are you kidding me? But we need to be in town tomorrow for all of his fasting and that was the ONLY way. I am just not happy but whatcha gonna do? Of course Mason had a croupy cough last night and Aiden has been just in terrible shape with the hives and itching skin. To the point of bleeding from all the scratching.

The first thing we do is Aiden's lower and upper GI scope. I am nervous about it, but it should hopefully be ok. Then on Tuesday AM we meet with a cardiologist and discuss the things that Dr. Grubb has been asking us to do. They may agee to do them or alter it a tad and do something similiar. We will see. After that we will see Aiden's Wonderful hepatolgist. If Aiden has more testing while we are there then we will stay and do it and if it last a long time, I will have Joey fly home and Aiden and I will come later. We are easy cheesy like that! (because we have no choice)

Thank you for all your prayers. This weekend I felt so much love. Joey and I are so blessed. That is one thing we will never say we have lacked along the way.. this road has been paved with caring people who would do so much to make it easier on us. What a special thing.

Anyway, I just sit here typing this as IF I had NOTHING else to be doing right now. Well I am keeping this short because I have to PACK! All the boys are snoring. Aiden in the living room in a tent, Joey and Mason on the couch. Joey has worked like a dog, so I will let him rest. I on the other hand got some sleep last night, just made a pot of coffee, and am hyper because of all the excitement from the sale.

I was sitting with My friends at the sale and one of them found one of our old fundraising T shirts we had made when Aiden was a baby. Just like THAT! I already got another idea... I think I will make some new T shirts. Last year we started the fundraising again, since everything was so depleted from his fund, and now this is our third fundraiser... I think it would be neat to wear some Shirts at the next thing we plan. Maybe in the fall. (or when I have a new wild hair)

So I am going to design some T shirts, and I think I already have them figured out. Can't wait to tell you more!

(wow this is some strong coffee! I was supposed to stop typing about 15 minutes ago!)

Have a wonderful mother's day. Please if you know anyone mother that has lost a child please remember them on this day. It doesn't matter if they have lost a child 50 years ago... it never stops hurting. And a special hug to my very sweet friend (you know who you are) that lost a mommy. I love you and you are one of the best mothers I know.

Happy Mother's Day.

God bless you!

The Hawk Family!
GO TEAM AIDEN!
The Hawk Family

---

Thursday, May 8, 2008 7:25 AM CDT

Thursday Afternoon CT and MRI results:

Aiden is fine (I don't know what we were looking for! lol)

MASON though:

I knew it wasn't exactly what we were hoping for because of my pediatrician asking to talk to me. She was up-beat though and just explained that the one cyst on his cerebellum was still there and I guess that cyst was lonely and a new one has developed in another area.. although close by. So I guess I was hoping for it all to be gone, but instead it he has gained a new little lesion.

I tried not to burst into tears when I heard, because she quickly followed that up with, but it is small and it is just filled with spinal fluid. (SO no cancer.) SHe also reminded me the obvious amnazing miracle Mason is. He is running and now even jumping. He talks a mile a minute and his favorite thing to do is sing his Halleluia song!

Halleluia Halleluia! I think it is precious.

So I think what I have learned along the way from all of our neurologist, neuorsurgens, and genetics docs that love to see Mason is.. If they LOOK good then that means everything. If we see him change, or deteriorate.. then we have a problem

Two lesions probably aren't better than one.. but they are better than three!

In the meantime I am keeping busy with the biggest yard sale of the world and just not thinking about any more of this. I hit my threshold and I just don't want to think about it anymore. And sometimes that is just ok.

God bless!
Always believing in miracles,
Lisa

Previous update below.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

AIDEN IS AMAZING!!!!!

Aiden did it with NO sedation, but not because they didn't offer to do it.. We asked to let him try first. And he did it.

After spending about a week of looking at books on hospitals and CT scans on google, and reading in his favorite transplant book "The Inside Story" Aiden mustered up the courage to do it.

Daddy held Mason because he was getting ready to go back for his MRI and Aiden and I went in. Joey slipped his "courage bracelet" into his pocket and Aiden walked to the CT scan with me. I told the tech, "Aiden is so brave! He is a big boy he just turned six, I think he is ready to try!" Aiden burst into tears and wouldn't budge the doorway. He was actually shaking! SO as any good boy mom knows The only way to shake a kid out of that is... Act like a fool. SO there I was with the bright purple lead gown on and I kept acting like it was falling off. Then I dropped it a few times, I pretended to trip and hit my head.. all things that make a 6 year old burst out laughing. He got closer to the machine and after 15 minutes he touched the table. we gave Blue Baby (his lovie) a ride up and down on the table. And with the offer of one more train from the train store.. He got on. It took him about 5 more minutes to lay down, but he did. I told him the head cushion he had to lay his head in was like his baseball helmet. He said,

"ACTUALLY.. it isn't. My helmet is red and it is more comfortable than this."

OOOOOKay.. whatever.. argue with me.. just put your head in it. SO he lays his head on the little cushion head holder thingy. And it wasn't tight enough so the tech got a wash cloth and rolled it up and jammed it by his cheek. Aiden's eyes widened, I smacked my self in the face, he laughed. (geesh what we have to to for these kids)

Then she takes a large velcro strap, straps his chest down, and then a while strap for his forehead. Aiden is lying flat on his back and with every muscle trying to see me. I am talking 100 miles per hour about trains and the park and Rolex and What we will buy and the food we will eat and the boat and everything I can think of. I fake trip a few more times and this generates a smile... From the tech.

The machine starts it job, the table moves he laid perfectly still. I think stiller than I have ever seen him. I actually didn't know he could physically sit that still!

There was two scans, the whole thing lasted 10 minutes. I thought at one moment he would bust out of there screaming, but he didn't. He just never took his eyes off of me. Not for a second. And I just prayed that the tears that were sitting in my eyes wouldn't fall out.

My amazing boy. My sweet boy. Oh my gosh. I am so proud of him. I am so proud of him! I knew one day he would be old enough to realize, ok this is scary, but it really doesn't hurt. And I guess it was yesterday.

Aiden busted out of the room yelling and cheering with a handful of stickers. I let the tears roll then. It was like we let go of something in that room. SO many terrible memories so many bad times. And we got to say goodbye. I feel so empowerd so strong and ready for the next steps. I am sad for him to have to get used to it, but just so happy he has. I love Aiden so much. I look at him laying there with his 6 year old little body, but in those eyes that never left my gaze all I saw was that tiny baby that I started this journey with. I remember so well at just 4 weeks of age, him laying strapped down to a very similiar table, with IV's going and a neuclear scan looking at his liver. The same little baby who barely even knew me... just laid there looking in my eyes asking me if it was going to be ok.

Six years later, I can't tell you the rush of feelings I had yesterday. The bittersweetness of it all. I am just so thankful God placed this child with me. Even if it means I have to act like a fool, smacking myself in the head, using a little bit of potty talk, and bribing him with things I can't afford. It is worth it all.

Mason on the other hand... I wanted NO part of that. Aiden and I celebrated with some cherrios and a slushie while my little one was getting an IV. I thought.. I will let Daddy be the bad guy. I got to go in while he was waking up... The good guy for once. Of course little May May was more concerned about the bandaid on his hand than he was about anything else. His scan lasted almost 2 hours, and we know no results yet.

SO yesterday was good... well you know the best a day can be with two kids getting their brain scanned.

SOOOOOOOOOOOOOOO NOW more excitement. NOW I am getting ready for a garage sale! A fundraising garage sale. (have I lost my mind?!) It starts tomorrow and goes Saturday. Hope it raises some money and the torture of a garage sale (ie junk all over my house) pays off. In anycase I have been blessed yet again by so many wonderful people who have brought their stuff over, and donated it. THANK YOU SO much. You guys have been everything to us!

So after Saturday I then clean up everything and begin packing for a flight out on Sunday Morning!!!!!!! We are flying to Cincinnati. I have learned that Aiden will be getting a full upper and lower scope on Monday afternoon. We will be looking for a reoccurance of his Eos disease and anything else that would explain the new weird symptoms. Yes of course it is Mother's Day.. and what better way to celebrate my motherhood than having my son have NOTHING TO EAT for 36 hours in advance? Just clear liquids. ANd yes by the way he is allergic to jello so that means liquids and popsicles. Oh joy of joys. SOmehow though I have to feed Mason. I am imagining moments in the bathroom scarfing down food so poor Aiden doesn't see. Yes Mother's Day Brunch.. not gonna happen.

After his scope on Monday, Aiden will then see a cardiologist on Tuesday. I guess we will see if our wonderful Dr. Grubb has some people who dissagree or see if they want to follow on with his recommendations. I am praying that whatever they decide we have some options for Aiden.

I have not shared this because I feel like saying, "Ok don't tell anyone shhhh" but hey this is the internet.. SO I will reword this Just don't tell Aiden's friends.

Aiden has had incontinence with his bowel over the last month. It has been heartbreaking. I don't want to talk about it. But we need to know if this is his dysautonomia causing his bowel to not work properly, or his allergic stuff. I am voting allergic, he has been covered in hives daily for a month or more. But we have to know. It is scary, but I am faithful it will be ok.

IN anycase, the excitement seems to always come in these magnificant waves.. calm calm calm.. then BAM hold on to your hats things are gonna get rough. I guess that is ok, because we do get to have these wonderful moments of calm. Just wished they lasted longer.

SO that is that. I will let you all know about the CT and MRI results the moment I know. Keep praying!

Love and hugs
Lisa

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Tuesday, May 6, 2008 3:59 PM CDT

I keep thinking of that 70's (or whenever) song "Freak out" if I has some better computer skills I would figure out how to put that on here. It has been the theme for the past ummm 5 days! Ohh what a joy it has been. First I get the bully, lunatic scheduler, then Mason's MRI is totally cancelled after him not eating or drinking for 12 hours because of a missing authorization.. then I get a call and find out that they called back an hour later to tell the radiology people we never needed and authorization in the first place and they should have just done it. The drama from the scheduler from hell was more than I could handle. But I have wonderful news to report! I received a call today from the radiology supervisor, and not only was she wonderful and understanding, but I managed to regain all that confidence I used to have in our local hospital. How easy was that. I don't care if she hung up with me and called me 100 names.. what I so appreciated was the time it took to call me after I made my complaint to follow up. I really appreciated the apology and then of course to hear that YES if Aiden ends up needing sedation they will do it! WOW imagine that.

Here is the irony of it all. Joey and I don't WANT to sedate him. Yes it is very quick, and it actually doesn't hurt at all! But I will NOT come to the CT with out the assurace that if he flips his lid he will get sedated. My hopes is that he will do it. That he will go into it and not flip his lid. BUT if he does, he needs help. He needs to not be traumatized. You just couldn't possibly understand unless you witnessed it.

I had these crazy angry moments as I was replaying the conversation with "ms. sassy pants" (thank you cheryl, that is a lot more PG than I was really calling her) I was remember how she was so condesending and how she told me all about her little grandson that "is so scared of getting shots at his doctor.. but we just let him cry".. UHHHHHHH listen lady.. this aint crying. This is spitting, kicking, screaming, begging on his knees, pleading blawing, turning blue, screaming for help, for someone to save him.. This isn't some little kid who gets a shot every 5 years crying. This is a child who has been held down for so many blood draws, IV, Ng tubes, scans, biopsies, surgeries, nasal swabs, breathing machines, sleep studies, and that is just in ONE DAY! So please spare me the crap.

Joey said I had lost it when I told him I would video tape Aiden begging me to save him. I have seen it all before... he will be trembling with fear, as he choked on his tears. I would video tape them as they forced him onto the table, laying across him with all their weight, took velcro straps strapped his legs as the writhed and kicked. Next they strap his chest and hands, while you see him turn to a panic.A real panic.. a child being captured, and held down. Then they take two rolled towels, place next to his sensitive little ears, then follow up with more of that Black terrifying velcro straps and velcro strap his forehead and chin down. He would buck and scream and gag from the tears. Then to top off the horror the big white circle machine would start spinning. It would make a whirling and banging noise. Lights and noises will screach out of it, as it spins over my terrified son's face. I would video it all for the world to see on You Tube and here and hell even play it on the news during their stupid telethon.

That was my plan... if they didn't sedate him.

what do you think? I would then pray and hope that everyone who would let a little boy go through that also had to go through that.. and have their body cut and held down and tortured.

Do you think I was mad? Do you think it still doesn't make me shiver with anger to think of anyone doing that to my six year old again? that has happened to him more that I can count. The gutteral screams... they terrorize me. I hear them. This aint no joke people.. being sick sucks. Being Aiden can really suck sometimes. And I get the front row tickets to watch.


So on a happy note they called, they listened to my pediatrician, they listened to the child's mother and of course they will sedate him. Because they don't want to hurt a child. They love the kids, and my little plan for video tapes and You Tube will never come to fruition and I will be a happy momma.

Tomorrow.

Yep, all of this is scheduled for the morning. Not only is Aiden getting his brain and neck Ct scanned, but Little baby brother will be getting an hour long MRI, also under anesthesia. Both boys. We thought, hey when you are already traumatized and the day is sucky, then why not just add a little more to the suck-fest? Instead of having two crummy days just cram it into one. So that is what we are doing. And afterwards a wonderful trip to the toystore. I can't get my hair done cause we are so short on money.. but we will find some to take them to the toy store.

OK so no I have not fallen off my rocker, or lost it completely, I just got a little freaked about the whole thing. I guess the problem is... I will never ever ever let someone tell me what is best for my child. That is my husband and My job... I may 100gree with others, but no one will TELL us what is best. He is ours, and God placed him directly into my care for this job. Sometimes I will be honest it is very very hard. It hurts it hurts sooo bad. But whatcha gonna do? Just laugh louder at the funny times, and smile bigger at the sweet times. It out weighs it always.

OK so you are all traumatized by my description of what my little lion has endurred, I thought I would share some of the wonderful photos of our fishing trip.. Enjoy and Keep both boys in your prayers!

Tomorrow a miracle will happen.. Mason will have NO lesion on his brain, and Aiden will be perfectly fine as well. I have faith!

Ps/ please keep your prayers for two of Aiden's biggest prayer warriors.. Mr. Dick Klemmans, and Ms. Kathy O'Neil. We love both of you, God is with you both.




Driving the boat



Aiden and Mr. Sam.. the man who took us on his boat




Mason catching some fish



Aiden weighing in his "catch" His Bass fish weighed 1.4 lbs.



Aiden and Mason both getting their trophies with the Mayor and owner of the Marina




we won!



And a hottie husband to finish it off.

Have a Blessed Day!

Hug your kids


Lisa - Team Mom

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Friday, May 2, 2008 11:55 AM CDT

I am just shocked.. so they didn't do the MRI. we NPO'd him, we did everything we should, but it seems that suddenly there is a new policy with PPO's that we need authorization??? Umm ok! So they called to get authorization from insurance company and it is still pending.This is the first I have ever heard of this.. so we were turned away and went home. SHOCK

Joey has so few days off of work.. and this was just such a waste. I am frusterated but remembering to Give all of this to God.

It could be worse... It could be worse.. it could be worse...

SO we will use this day as we have been given. The sun is shining, everyone is sitting by my parents pool, having lunch, and we are going home to get the boat and enjoy the day.

Ps/ as far as the nasty lady on the phone.. My pedi handled it. Aiden will be sedated just as his Rx calls for. And I am following up with her supervisors to let them know of the ridiculous comments she made to me. I used to take everything, roll over and just take it.. but now I am just not gonna do that. There is no need for it.

SO we are off to make the most of the sunny beautiful day. I will worry about the testing another day.

XOXOXO
Lisa

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Friday, May 2, 2008 7:40 AM CDT

Pray for Mason.. He is getting his MRI of his brain today. We are looking at 1) the lesion on his cerbellum. - has it grown, changed, or possibly gone away? 2) also his myelin - has it changed and is there any progression in the myelin changes. 3) PVL see if they see a consistency in the PVL they saw last year.

I am typing this with my hands shaking. Litterally shaking. What causes hands to shake? I am so nervous.

We also have to have a BIG discussion with radiology today. They are giving us a very hard time about some oral sedation for Aiden's CT scan of HIS brain and neck. (which was just scheduled and I haven't told ya'll about) Joey and I will be speaking with someone today while our baby is under anesthesia getting an MRI. We will be advocating for our big boy. I can not tell you the disgust I feel after talking to the rudest most condesending person yesterday from radiology. I am outraged and inraged. I will NOT let anyone tell me what they think is best for my child when his doctors and medical team all agree. I will NOT let some scheduling lady who has no idea what she is talking about bully my family.

Sooooooooo

Anyhoooo..

Now only 1 hour and 26 minutes till we leave to take Mason to his MRI. Hands still shaking....

Just in case you ever wondered, just in case it crossed your mind... NO we never get used to it. Never. Each time we go through frightening tests, painful procedures, and difficult discussions it is raw and scary and terrible as the first time. Sometimes with a little post traumatic stress peppered into the mix it is worse.

So say a Prayer! No lesion, let it be gone, let it be a miracle for my Mason so we never have to do this again. Thank you for your prayers. God bless

Mama Hawk

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Monday, April 28, 2008 0:04 AM CDT

Thank you so much for all the prayers! Aiden did great over the weekend. No sign of the weird breathing thing. He had some hives but over all he was back to his normal self! I am happy to inform I have uploaded Aiden's birthday pics just in time so I can get these incrediably amazing fishing photos on next!

Since I had so many photos I decided to make another little montage.. I hope you enjoy. I can't believe my baby is 6. I love you Aiden! You are my hero.

CLICK PLAY below and turn up your music to join the party!

Make video montages at www.OneTrueMedia.com

Coming soon.. the amazing story of our very very special weekend! God bless

Lisa

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Thursday, April 24, 2008 4:01 PM CDT

FRIDAY AM
UPDATE

I am just gonna ask for a few prayers. With all the birthday and fishing trip excitement I haven't been talking about all the latest weird stuff with Aiden. Buut about three weeks ago Aiden had a pretty bad allergic reaction. Since then he has vommitted while eating 3x, been covered in hives daily, and has had bloody stools. He has moments where he is out of it and tired and sleepy, then totally normal typical moments.Last night he laid in bed screaming about his belly hurting... with hives all over his chest. This morning he was coughing anc oughing and coughing. His pulse ox would NOT go above 93. It hung around 91 for 10 mintues. The little divit in his neck was just going in and out and in and out. I took him to the pedi and after he opened his mouth it had ulcers in. HIs throat had just red ulcers in the back and one on the tounge. She said if it looks like that all the way down it explains the pains, and the blood.

he has this fishing trip, we all agreed it was ok to leave but we are taking a nebulizer and of course lots of benedryl and steriods. He has been on 20 mgs of prednisone for 5 days we wil continue with that for 3 more. This is life sometimes.. sometimes it is a choice. we can sit at home and wait for more symptoms or we can try to enjoy life a little. (even though I am freaking a tad). So just please say a pray for my little guy. he is looking ok now. My hunch is that his eosinophillic disease is back. They want to scope him again asap. But next friday Mason is getting his MRI.. and last year I had Aiden scoped and Mason's MRI back to back. How weird is that?

Anyway,.... cover us in prayer for a safe trip and that I don't regret deciding to still go. THANK YOU XOXOXO



~~~~~~~~~~~~~~~~~~~~~~~~~~
thursday update

No photos of the party... YET. Not that you would all guess that I can be a tad flakey at times.. but I managed to place my camera on top of my car after going to the beach the other day. I drove around like that for a while and when I hit the brakes in an intersection I saw the shiny little silver thing flying into oncoming traffic.

ok yes just two days before I left a diet coke on my car and some woman jumped out of her car, pounded on the window to tell us and basically scared me to death... where was she when the camera was on the car!? The coke was fine.. the camera.. uh not to fine.

SO I jump into the intersection with death defying grace, (visualize my stealth mode) and saved the camera from a crushing tire.. ALL while on my cell phone! Yes I know I AM the person you roll your eyes at when you see me on the road. SO imagine my suprise that when the camera hit the concrete the batteries flew out of it.. but the photo card was still in there! YAY. SO I am now going to have to get the card to some walgreens or something and get a disk. Sigh. SO in the mean time photos from last year.. does that count?

The party was wonderful! 16 little friends all playing at the play place. Aiden was so cute and Mason thought it was the best day ever. The cake was great, the photos were adorable.. but all of that is just words with out the proof! So hang in there.. it will come.

In the meantime, I am packing for our fishing trip! Along with other families with children with life threatening illness, we are going fishing at lake ocochobee.I don't know how to spell that, but there will be professional anglers there, and some amazing volunteers that set this up. Aiden is so excited! Joey is more excited. I am just happy to get out of town and it NOT be a hospital. (has that ever happened?)

I have heard ZILCH on Aiden. ZILCH NADA NOTHING AT ALL. I am getting frusterated. Hoping to hear soon.

Thank you for checking in on us.. I will update soon! And i just want to thank all of you for the amazing entries in the guestbook. I cried and cried reading those things. You guys are so sweet to take that time to let us know you are still there, reading after all these years. I can't tell you how much it means. THANK YOU

ANyone want to purchase cookbooks for mother's day?? Let me know! email me! rolexh@aol.com

HUGS
Lisa

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Tuesday, April 15, 2008 2:47 PM CDT

Memory Lane... take a walk with me.

Aiden turns 6 this weekend. This Saturday my baby who has beaten so many odds, celebrates another year of life.

Sometimes when I think back on these six years I see it like movie clips. Some are vivid, and some are very faded. Every once in a while you run across something that you have forgotten about. You see a photo or read something and your memory is jogged back to that moment. Every raw feeling, and joyous celebration of it feels so real. This happened to me today.

I was going through some old photos for scrapbooking, organizing them and putting them in a different container. In an envelope all by it's lonesome, laid a CD. It read

Chateau Elan

I knew what it was, and my hands trembled with excitement. I couldn't wait to see if the disk still worked, and if it had all the photos I had wanted to see. I popped it into the computer, and there it was. An incrediable moment in my motherhood with Aiden, right there on that screen.

I know some of you who are reading this remember this and were even there. I know Kitt, you remember, heck you even have one of these photos framed! But for those who don't know, I thought I would share it. It is almost a parrellel to the special day I will share with Aiden on Saturday, 6 years after he was born.

You all know the story of Aiden's diagnosis, and his transplant. You know he had many complications, and spent four months in Atlanta post transplant.

But before all that, I was just this pregnant 25 year old telling my online friends at the Chronicle of the Horse, (COTH) all about my expanding belly. When I found out it was a boy, I knew one day I would have him do leadline and be a barn rat and it would be this great life. I imagined this little boy in his tie and jodphers. I could see him on a Paint pony or something a little less princessy. I had it all in my head figured out. I would have my horse, and he would be my barn buddy.

Aiden was born April 19th 2002, you know the story. The barn buddy, the horses, all of it... out the window. Now I just wanted my baby to live. I just wanted him to live. All those dreams and ideas of what life would look like seemed like a joke now. But my horse friends, or now renamed the "COTH aunties" remained strong, faithful and supported us through it all. Holding fundraisers, praying, and yes even offering to donate their liver to Aiden. These women cared furiously. It wasn't about the pony and the little tie anymore, it was about us being sisters and holding each other through the worst time of my life.

The call came, he got his Gift. He recovered slowly but he recovered. Through it all my COTH friends and my best friend Kitt remembered the little dream I had when things were so much simpler.

So one day, on a breezy cool Atlanta afternooon, we all gathered together. One friend loaned us their pony. Another his little helmet. We all gathered around that ring at Chateau Elan, as my little baby boy wore his little tie and road his first pony, in his first leadline class. The annoucer read the most beautiful thing I have ever heard. He spoke about how only months before this baby lay in a hospital bed fighting for each breath. How only that morning, medicine was pumping in an IV that sat in his heart, but now.. through the Gift of Organ Donation, he was here, and it was a miracle. Kitt and I walked that pony around the ring, that little pony was mean as a snake and kept biting her and we were laughing through the biggest sobs of joy and victory.








I remember that day like it was yesterday. It was so beautiful. If you only knew how every day while we waited for his liver, we prayed and begged him to just live. That moment was him living. He was not just doing what I had dreamed of when I was carrying him in my belly, he was doing it inspite of it all! He overcame so many odds, so many moments that were stacked up against him.

This Saturday, he will be six. For a mother's who only dreamt of her child just growing older, I can tell you that it is the most amazing gift. He has overcome so many odds, so many moments that were stacked up against him.

He lives life with zeal. When he plays it is to the fullest, When he loves you it is to the fullest, and yes when he is naughty he does it to the fullest. There was this day where Aiden fufilled a dream I had years ago. And now there has been thousands of days where Aiden has fufilled so many dreams I have.

I love you Aiden. I loved you so much back then, but I just am so thankful that you did get that second chance at life, so we could get to know you. So we could see you grow into this amazing kid. Both your mommy and Daddy love you so much. God has so many wonderful things in store for you my sweet boy, Happy Happy wonderful Birthday.



Love you forever and ever and ever
Mommy, Daddy and baby brother

---

Tuesday, April 15, 2008 8:12 AM CDT

OK I must direct you to

Cheryl's page... my update is there


I just updated on her page... you won't even believe it when you read it.

Lisa

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Sunday, April 6, 2008 9:06 PM CDT

BIG NEWS

Now two teeth are missing in my big boy's smile. It is an exciting time in the Hawk House. The tooth fairy is digging deep into her pockets and gathering her coins. A good friend gave me a great idea of a baggie full of coins. Pennies, nickels, dimes. The baggie doesn't even have to have a dollar in it, but with all the pennies it looks like a pile of money. We did this with the first tooth Aiden lost, and he kept running around with his $1.00 saying, "The tooth fairy is RICH!" So tonight we will do the same. It feels so full circle to do these things for our children, remembering the times when I was a little girl and the tooth fairy would leave me money under my pillow. Parenthood is the best way to be a kid again!

Last week was our "spring break" it was great for Aiden to play with Hannah one day, and then he got to go on the boat with his Uncle Ron and cousin Angelina. For some bizzare reason my digitial camera will NOT upload the photos of them and their catches! It is so weird. It uploads half of the photos, but then won't the other half. At any rate, Lina caught FOUR sharks (little babies) and Aiden caught a tiny little fish and a STING RAY! who catches a sting ray? They had a blast. It was the first time anyone had Aiden other than grandparents in years. It was great! Ron is an ICU and ER nurse so he is well versed with an epi and many other things. It felt nice to have the little break, and just between us, once Aiden left off on that boat with Uncle Ron, Mason and I B lined to the local Duncan Donuts. Uhh just for the coffee I swear! (and maybe a tiny chocolate donut)

Aiden and Lina on the boat



Aiden and his fish he caught



If can figure out my camera issue I will post the ones of them with the sharks.

On thursday last week, I spent the morning on the phone with doctors, and then Aiden's transplant coordinator. We are totally on the same page and they decided to contact Dr. Grubb themselves to better get the plan completed. I was so drained and emotionally exhausted I just really broke down. I felt like we were watching all the progress we made just slip down a drain. So all day I was moany and grumbly. Just really not in a good mood. Joey came home from work and suggested we go downtown and see if we could see the Indy Cars. (there was a Indy car race here in downtown St. Pete this weekend) This was not normal for him, because Joey is a man of routine. But, once downtown we see people everywhere and realize they were getting ready for a parade. We decided it was just the medicine we needed to get us feeling better.

These are those moments where I think we are doing one thing, but God has really got a plan.

Sometimes in my walk as a Christian I feel super close to God. I feel like I am just totally in His presence. When you have a sick child you get a lot of WOW moments. BUT, Sometimes like lately, I feel sort of distant. Like I am not understanding what I should be understanding. Kind of alone. Of course everyone has their own personal beliefs and I am only speaking for myself, but usually if I am feeling that way it is because I am placing myself apart from Him. I think with all of my plans, and ideas and methods of denial.. what I am really doing is just trying to grasp some sort of control over all of this. There is that whole "Let Go, and Let God" philosophy. And I struggle with that. So in all my ignoring, and then all my micro managing, I wasn't really listening to what He was saying.

So at this parade they have venders selling food we can never eat, food that Aiden is always allergic to. But as I was passing the Kettle corn guy,Something told me to stop and talk to him. I ask him about Kettle corn, never having it myself, and to my surprise.... to my delight and excitement, it was totally safe for Aiden. I asked the poor man at least 5 times the same questions. He showed me the 4 ingrediants that went into the kettle corn, all safe. He promised me that the equipment had never been used for anything other than this item. He asked me if I wanted a bag, obviously over all my questioning. I must have looked like a real crazy person, because I told the man I had to think about it.I just wasn't sure. (Umm hello it is popcorn.. it isn't like I was saying my vows to this man! )

As I walked back to Joey and the boys, I was visibly shaking. I was so nervous and excited to think, my son can eat something at a parade? Something he walks past every place asks about, and then gets denied?! I tell Joey and we sort of just ponder what is the right thing to do. Finally we agree, with epi pens, police and ambulance close by, we can try it. There should be no reason he would react. The walk back to the Kettle corn popper guy was like this victorious strut. I knew what I wanted, I was gonna buy some darn popcorn for my kid! Just like all those other greasy sticky little hands eating it, my son was about to eat it. I threw down my tickets for the popcorn, told them man, "My son has never in his life eaten anything anyone else has prepared at a carnival, parade, park, heck even the hospital!" He looked at me blankly probably muttering something about me being a muffly yuppy mom afraid of hormones and non organics in my child, and handed me a bag. He didn't really get it, but I did.

So I walk up to Aiden, and show him the popcorn. I told him, it was for him. He looked at me and said, "Am I allergic?" Of course at this dramatic point I wanted to just say, "DO YOU THINK I AM TEASING YOU KID?" I assure him I had quadruple checked every ingredient and it was ok. SO drum roll..... For the next 2 hours, my son ate popcorn popped by some man I don't know... and I couldn't get over it! I looked at him every 5 minutes and asked him, "Is it good?!" He just smiled and said it was the best he had ever had. I felt so normal.

In the midst of it all.. God pulled us from our home, took us to a place we would have never been, sat us in front of a ruddy faced man popping kettle corn, and reminded us.. HE IS WITH US EVERY MINUTE. He hasn't forgotten my son, he hasn't stepped away, and no matter what transpires.. he loves us. He loves Aiden. He gave us a treat, and with every bite I felt closer and closer to God. I felt refreshed and strengthened. I felt clarity and just humbled.

It doesn't matter how many times I run and hide in my PJ's or how many phone calls I cringe over to doctors offices, He is there. Yes I do feel like some of the progress we have made towards fixing and healing Aiden has been stopped. But now I remind myself that I don't need to cling on with my knuckles white. I don't need to feel like I have to make tough choices and beg people to listen, because in a moment where we feel alone, and forgotten, God is there to remind me that He has so much more wonderful things for us. God is there to give us pleasure and things we never knew we could have. We just have to trust in Him.

Trusting Him
Lisa
Team mom of "Team Aiden"

---

Wednesday, April 2, 2008 4:19 PM CDT

OK So here is the latest.. The local cardiology peeps called today to explain the issue, and I feel like at least it makes more sense. The doctor is concerned that the stress test won't work because of his age, and he thinks that if he does the neuclear stress test under anesthesia then it may show something. If it shows something then we need to go BACK under anesthesia to do a catheter or heart cath. So he thinks if Dr. Grubb is ok with it, he would rather do the heart cath and look for coronery artery disease.

BUT

And it is a BIG but

the EP (electro physiologist) is NOT comfortable putting in a Reveal Dx on a child that is tripple immune supressed. Period. He thinks it is way to risky.

I think that is lame. SO the EP is not comfortable with Aiden but the regular cardiologist is.


SO the BUT is.. if we are going to put him under to do a stress test/ heart cath/ then we should do the monitor at the same time.

If they won't do the monitor here in florida then we are forced to go to a place where they will. Cinci.

SO Of course i have this very important cinci call I am waiting on today, and like the typical blonde I am I have the phone locked in my room, and I am outside with the kids. Gee that does me no good. So when I saw that Cinci called me, I just kicked myself. I missed their call.

So I will call tomorrow, my super sweet coordniator left a message that said they had some options for us so I am curious what they are.

So that is the scoop. I really appreciated the Dr locally calling me today, he was very nice and spent a lot of time on the phone with me. He said many things like, Aiden has earned himself all of these tests and more with the unique path he has taken us down, but he was so concerned about how supressed he was.

(if you are wondering what I am talking about.. basically Aiden is on the same amount of immune supression as a child who is transplanted and on day 1) Most all children who are 5 years post transplant are not currently on this much medication. We did get to drop down his prograf levels by three fold once we went to Cinci, but the prednisone is not going anywhere, and the cellcept.. well that one is the ugliest one to me. So basically it freaks people out. what they don't KNOW about Aiden is that the kid has the most out of control immune system.. through all the medications he is never sick, he has severe life threatneing allergies, he is covered in excema, all of the thinsg that would NOT happen on medication has happened.SO Aiden is different and I don't think they should be AS worried about it. BUt of course maybe I am in denial! I don't know.)

Anyway, I will know tomorrow what we are doing. I just have to stand firm and say that I don't want this to ruin his birthday party, or his FIshing wish trip. I think as he gets older it is important to not only balance these important medical things but equally remember that a quallity of life is as if not more valuable. If they tell me come now.. I will say fine. BUt if there is a choice I will hope to wait till early May.

The local cardiologist are sending us a "card" monitor. It is an event monitor, that if we can catch something we stick it on his chest. we will keep that for 3 months. Unfortunatly he does this in his sleep so I don't see how effective it will be. I might, just for giggles, stick it on him in one of his headache, sleepy moments. I don't know.

Anyway.. Like I said yesterday, I really do feel like we took 3 steps forward with meeting Dr. Grubb, but now 2 back after all of this. Aiden's coordinator said, "we dont' need to reinvent the wheel" and she is right. We are on a roll.. I am hoping it keeps rolling.

Please keep us in your prayers. I just so appreciate it.

God bless
Lisa

---

Monday, March 31, 2008 7:25 AM CDT

Part 3

I am just so .... something. some word I don't know. I am just so....... ugh

My pediatrician calls me, I have no idea what she is going to say,she is all annoyed sounding, I am just assuming it has to do with more faxes dissapearing into thin air. NO... Instead


Cardiology has decided Aiden is too complicated to do the stress test with neuclear medicine, and they will not place the monitor in a child his size and his level of immune supression.

What? he is too complicated? You think he is going to crash during the tests in your care? what about him crashing in his own bed at night? They say locally, they think he needs beta blockers to balance his heart rate, and the specialist said that until he has longer term monitoring he thinks betablockers are too dangerous. Considering they don't know exactly what his heart is doing. If it is dipping too low, then simply he gets a pace maker. BUT you can just stick a pace maker in a kid with out some proof. That is why we want to monitor him! He needs it!
UGH.

SO this is why we have Cincinatti. I guess we go up there. I guess we figure it out there. You know 1000 miles away. Hey at least they want to help, and work with us. At least we are still one step ahead last year when there "was no problem". Now I guess I get to hear he is TOO sick to deal with. Back then he was TOO healhty.

So I am angry and frusterated and honestly trying to figure out 1) Aiden's 6th birthday in a few weeks and how we can manage all of this with that not being disturbed 2) how can we afford this again?? 3) If joey can't get the time off, do I bring two kids to Ohio?

It is so hard.

NOW do you see why I hid in a corner for a month? GEE this is why!

Anyway, here I go.. ralling back up.. fighting this beast of illness and I guess somehow heading to Cincinatti.

Ps/ labs were mediocre.. Still had polycythemia, as always, but now the phosphorus was low, albumin was low and his differtial was big time out of whack. Dr. Cross asked to repeat them in a few days.

I guess this site will be active. the No News is good news thing is true.. so there will be lots of news.

Keep praying for our little boy!

Ps/ ***in good news.. My neighbor who is a teacher at a local school, took the time today to do some testing on Aiden.. she said that he is offically falling in the Stage 9 level of first grade. That is 3/4 through 1st grade! And he is still only 5 years old. I couldnt' beleive it! I have been so concerned and look at that. Maybe one day Aiden will be a doctor or nurse and help little children who have to be sick like he has been.

Lisa

~~~~~~~~



part 1

Hope you had a great weekend! One of my oldest friends got married this weekend. Aiden was the ring bearer for the fouth time in his short life. Of course he was adorable. I can't lie.

Yesterday we went to Busch gardens and just had a good ole family day. It felt so good to be admist a sweating mob, all pushing to get through the same small lines. Of course the boys had a blast. I was so excited we finally had a big moment at Busch gardens. Aiden was finally by the hair of his chinny chin chin tall enough to ride the bumper cars. So for the first time ever Joey and him climbed in and hanged around. Of course once he was strapped in with his big grin, I read on the sign "if you have blood pressure issues, or surgical history please refrain from this ride".. oops.

Over all it was great. I am the dare devil rider. I love to ride rides.. Joey on the other hand.. well not so much. So I just can't wait till Aiden is tall enough for the mini roller coasters! Finally a partner, cause as usual he has been cut from his momma's mold.

Of course I have a ton of photos to upload, and will be doing this this afternoon after LABS! Aiden is getting labs this morning, becaus he is so pale! I know he does this, get pale then red, but we have officially have had 4 days of pale. Of course I am sure his Hemoglobin will be 3 points too high, and this will be another example of confusing this child is.

Mason has his MRI scheduled for April 17th. Two days before Aiden's birthday. I was going to reschedule, but with Mason it is pretty cut and dry, he recovers well from the anthesia and usually does ok. So joey and I decided to keep the appointment.

Aiden on the other hand has no appointment. I am now on the virge of calling Cincinatti and getting it done there. I feel like crying with frusteration! We can NOT afford to fly to cincinatti for these test and heart monitor placement. Joey has no time off left. I don't understand why they are having SUCH a problem scheduling this locally! They just seem so disorganized at this office.. but I am sticking to my guns and doing it locally. there is NO reason why we should have to spend thousands of dollars flying out of here to do this. It is simple!

Today while getting Aiden's labs drawn I will stop by the cardiology office again and see what I can get accomplished. So I guess I will make this update a two parter... so to be continued....

Love Lisa


Part 2

I am telling you would really wouldn't believe this! So I go down there, and ask the receptionist if I can speak to a nurse.. She has the nerve to say to me, "we don't usually just schedule appointments with people off the street".

????!!!!?????!!!!!!!

DID YOU NOT HEAR ME LADY? I said, My son is a patient here.. and I need to get an appointment scheduled NOW!

UGH so she then tells me to sit and wait the nurse (is there only one ?) will be right back. 45 minutes later.... I ask for a pen and paper, call my pediatrician's office for the umpteenth time, and then write a letter telling them exactly what I need, and NOW! My pedi's office faxed them, called them and is just at their wit's end.

And guess what? they said, "we never got the fax" ARE YOU KIDDING ME?

So today again they faxed it to "Janice" it seems Kathy is figment of our imagination. They said they would call us today. Ummmm I will NOT hold my breath.

So, I feel like crying and just screaming! If someone says, "Umm we think your child's heart is not beating at times in the night." would you not like to have that LOOKED INTO?!

I Just thank GOD that he is doing good!

So speaking of doing good.. I have a new theory. My new theory is that Aiden is worse when it is cold. He started having his episodes originally in November 2005 Then it happened over and over till the spring.. then last year same thing.. then this year.. same thing! He was admitted and sick 10 times since thanksgiving now he has been great.

SO my theory is that maybe the cirulation slows when he is colder, which slows the Heart rate even more? I don't know.. it is all theory.. but when you see ANY kind of trend in a child that is paving his own medical way.. you pay attention. Of course, now telling the medical professionals of my theory is another thing. We moms know first, convincing them is a whole new deal.

****** OH WOW I just got a call from pedi's office.. we have confirmation the fax was received! It is a miracle! Now... we have to show the doctor, schedule a surgery and his echo will be done in nueclar medicine with a radioactive dye during his stress test.

I just want to bawl! DO you know how guilty I feel getting my nose involved in the scheduling of torture for my child?! I don't want to call! I don't want to be a part of it! I feel so guilty knowing I had to push and push for this. I know he needs this, and it is "for his good" but it never feels like that! Now all I want to do is say, "NO I don't want to!"

Anyway, the dichotomy of a being a mother. Every mom understands that one.

Well we have good news! Great news! News that I just know was ALL from GOd!

I was contacted by www.childswish.org they are an organization that grants special trips and moments with an "outdoors" theme! It is soo amazing! Even though Aiden has had a wish from the Make a Wish Foundation, they emailed me us and told us that they would love to have Aiden come to Lake Ochachobee in Florida for a weeken Bass fishing trip.

I am now calling this "Joey's wish". Which by the way he deserves! So anyway, we will drive to the lake, and then a group of professional anglers (fishing guys) will host each Wish child on their very own boat! They will go fishing for the whole day with professional fishermen! Uhmmmmmm can we say... DREAM COME TRUE (for joey?)

We are so excited. And what perfect timing. Today at Labs, Aiden was terrified. Screaming, pulling away, needing to be held down. Trying to run out the door. ENOUGH IS ENOUGH. He deserves to know that people care that he doesn't get to just be a kid with no worries.

That fishing trip is the weekend after Aiden's 6th Birthday. I am hoping for a pool and raft for me.. but in anycase, it will be a wonderful time for Daddy and son.

OK I feel like I have SO much to say! There is SO much more to tell you all.

I had wonderful success with the stationary I am doing! SO many people ordered cards, and bookmarks. I had a blast with it.. but now am done with all my orders! SO.... if anyone is interested please email me at rolexh@aol.com If you don't know what I am talking about I am currently uploading photos as I type and will show you.

Also we have cookbooks still! If you think you would like to help sell them at school, or to a rotary club, or whatever athletic group you are a member of.. please email me as well!

We decided that we will be doing another fall fundraiser for Aiden this year. Hopefully help with the medical fun he has with the American Liver Foundation. The wheels are already turning for this next raffle and fundraiser.

Anyway, so as you can tell nothing is quiet anymore.. things are as they normally are. Stay tuned.. more news to come!

God bless

---

Tuesday, March 25, 2008 7:24 PM CDT

I would tell you the drama of the scheduling but you wouldn't believe it! Dr. Grubb sends the dictations, and scripts.. local cardiology doesn't "get it".. My pediatrician's office faxes it to them... and yet.. cardiology doesn't "get it". My pediatricians office faxes it again, but to a direct line with a person who will be "waiting".. and you guessed it.. it never comes. So yet again no appointment STILL Scheduled. And after multiple phone calls late this afternoon no verbal confirmation that anyone received the dictations.

The fabulous nurse Mary says, Lisa I printed a copy of the dictations for you and they are up front at the office. But there is this tiny little voice in my head telling me, "Lisa you don't need to see the doctors notes. Don't read them. " I don't know why but I think I will not read them. So I ask today my fav nurses at our pedi office... "basically what is the dictation?" they say.. "It just says that they want these tests done! Uhh ok so after all of this waiting for these dictations it is basically a long winded script!? Uhh what I already gave cardiology 5 weeks ago!

This is frusterating beyond belief. I will honestly say that the cardiologist that we met was amazing. we loved him.. so helpful! But.. get through the staff and provedures has been really ridiculous. My pediatrician said, "Lisa I called them and told them to get the tests done asap that his specialists thinks his heart is stopping in the night during the episodes." You would think that would rev up someone's engines.

SO oh well.. tomorrow I will march myself down there IN PERSON. It has to be done.

In other medical news, Aiden has been feeling puny today. yesterday afternoon it started with the headaches. Then again this morning. Pretty much the entire day he has been in "his spot" on the couch. Blankie and pillow. It is getting so frequent that I don't even really notice it anymore. There is no rhyme or reason to how he feels, but I imagine with all of the systems that are haywire in him that it feels crummy everyonce in a while.

Last weekend/ week was really fun with some easter activities. There was the MOMS club easter egg hunt, and then we went to the beach!




What a treat! We got to have the honor of having little Savannah come with us to the egg hunt.





Savannah is so darn cute and is such a miracle! That little princess has done phenominal since her liver transplant! Amazing what a healthy organ can do for a child!

So although things have been quiet around here on this site, I can tell you it is all the calm before the storm. Aiden has all these important tests and then his monitor placement coming up, and yes it is that time of year Mason gets to have his brain looked at. Infact, they were shooting for us doing it in march.. but IMAGINE THAT, I didn't want to! LOL So with that, Mason gets IV contrast and they look to see if the lesion on his cerebellum has grown, changed, or maybe dissapeared (praying!) and then also to confirm still no continued changes in his myelin. If there is change and if the lesions has indeed grown, then the white vest with all the buckles and ties would be adorned by me. I am sure that since Mason is now a mini prodigy that all is well in his very cute brain. :-)

Have you ever heard of sibling rivialry? I am sure you have. My brothers and I were pretty much rivals at sports and athletics as kids. I was always getting little cheerleading trophies and gymnastics medals and lining them up on the mantle next to my brothers.

Well in the Hawk house we have taken that to a whole new level. Blue Cross Blue Sheild of florida sent us a lovely booklet. In it was the entire 2007 itemized hosptial claims. I opened it like it was christmas. Of course making a bet with joey on which child would have been billed more. I won (well I will just say I did since he isn't the one writing this) and Mason actually scraped by beating Aiden for $62,720 in claims last year! Aiden had a measly $59,849 in claims. Yes Mason's hell year was last year. To summarize:

1) you have a perfectly healthy child
2) oops we were wrong
3) he is just a tad delayed
4) oops we were wrong
5) He is moderatly delayed so we need an MRI
6) wow look a tumor!
7) ok a new MRI
8) Praise God no cancer but we can't remove it
9) lets do another MRI
10) Oh Phew it is a cyst and it is not hurting him
11) OH.. BUT shucks he has white spots all over the other parts of his brain his myelin is changed.
12) Oh well, he has a metabolic problem. He has a carnatine deficiancy.
13) he has a major growth disturbance
14) thankfully no genetic disorder that they can name
15) He has hypotonic cerebral Palsy
16) Praise God who is awesome and healing.. Mason begins to thrive.

And that all costs $60,000 bucks.


And you wonder why I have been on a little break? LOL

So in short I am all rested up, ready for the next storm of stuff. We will get these tests done on both boys, then head back to Ohio in May. Of course I also started a diet again, so you know we will be seeing the inside of many hospitals soon.

Thanks for riding this roller coaster ride with us. Thanks for the ups and downs and the very uncommon times I get off the ride like lately. This is all though about Aiden. All about one little boy who was born with a disease that he beat. Then given more and more obstacles. yet through it all we have remained optimistic, hopeful and just a darn right dysfunctionally happy family. Only God can do that.

Have a terrific week, updates coming on Aiden's appointment.

Love,
The "team" mom.

GO team Aiden!

---

Thursday, March 20, 2008 6:50 AM CDT

HAPPY 21st BIRTHDAY STEPHAN!!!! WE LOVE YOU!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Update

You would be shocked at how many little emails I have gotten since I haven't updated so frequently. I was telling my Sister n Law Vera, usually when I write my journals I imagine myself standing in front of a big empty room, taping my mic and saying "Is this thing on?"

But do not fear all is well with us.. it is almost always the case of No news is good news. At least on Aiden's behalf. I, on the other hand have been in ultimate hermit hood. Not from regular life just medical life. Sometimes when things are good like they are now the LAST thing I want to think about is medical stuff. BUT I must snap out of it and get back into the swing of things. We still have NOTHING scheduled on the cardiac front. I was "letting" them (as in-the professionals i.e. scheduling, nursing, doctors) handle it.. but CLEARLY this is a job for SUPER MOM! Or simply a well placed phone call with my best impression of a stern voice. HA!

In the midst of me also avoiding medical land. I did not get Aiden's labs. Last week.. or this week. Sometimes I just am a rule breaker. NOT OFTEN! Ask my friends, I am too neurotic to break too many rules.. but when it comes to my child's comfort..... we break some rules. But alas. We will buckle down get labs and be done with all the hermithood. It was nice while it lasted.

I have some BIG news!!! Aiden lost his first tooth!!!! The bottom front on the left side. Oh what a drama that was! This child has been cut precisily from my mold. Joey (super dad) got the whole thing on video, since I wasn't home. When that tooth pulled out.. Aiden looked blank at the camera.. pupils like little pin points.. and turned pale white. THAT's MY BOY!!! After all he is his mother's child and I am a fainter. The worst of worsts. I don't think I have met a person who faints like I do. I wonder if there are other medical moms that have this tendancy and then were thrusted into having to change dressings, place, IV's, etc.. in their own child! I am sure there are others like me! When Joey and I first started dating..we were visiting my parents. He was carrying me and swinging me around (YES THERE WAS A TIME WHERE I WAS THIN ENOUGH FOR HIM TO ACTUALLY CARRY ME! that is hialrious!) Well he placed me gently on the ground but my ankle kind of rolled a little It scared me.. so I passed out. APPEARENTLY I don't do that precious little sigh then sleep gently on the floor like they do in the old time movies.. I guess I scream, turn white, then violently shake like a seizure. Joey was so scared he shoved his wallet in my mouth!!! WHAT ON EARTH??! What was he thinking? Here let me MAKE you swallow your tounge by shoving a large hard leather item in your mouth. HA! He almost broke up with me.. but for some reason he stayed. I remember how scared he was... and never quite looked at me the same. He kept saying, "Don't faint on me!" Yeah, like I could help it.

The fainting has susbided a lot since I have had Aiden.. I have learned to suck it up. But that is not with out loud panting and sweating and complaining. I still have to have my Dad drive me to get labs on my self. That is bizarre.

I know Aiden and I are so similiar, but then I imagine how many sticks, and IV's and pokes he endures. Poor little guy. I have had maybe 5 IV's in my life.. and they HURT! He had a broviac (central line) that sat right in his heart and stuck our of his chest for 15 1/2 months! He was only 6 months old when they placed it and nearing on his 2nd bithday when it was removed. For that whole baby hood, my baby had a tube running out of his chest. A direct access to his heart. The scar it left behind is one of the most disturbing ones he has... and one of the ones I most proud of... it reminds me that he is protected and special and just a fighter!!

It is a funny thing. I know my liver friends can ALL atest to this. When things are calm... it is time for us to reflect. To actually take a moment to "deal" with what we have seen, and done to and with our children. At our support forum we have a place called "coping couch" We all frequent ourselves there. Especially during anniversary times, or calm times. I read these amazing women.. so strong write things like, "I don't know WHY I am sad today." or "It came out of the blue but I am in a funk." We all beat ourselves up for having bad days... Then we support one another and remind each other.. this is NORMAL! If we didn't hurt or reflect we would be NOT normal. I think of all these women and how they just were all like me. Pregnant with such hope and then one moment later they were told their child will likely die. Just that one moment in time has wounded me a lifetime. IF everyday was peaches after that.. I deserve a funk everyonce in a while.. with no explaination or no guilt. Ahhh but that is the plight of the martyr momma. We just take it, and do everything we can to count our blessings. Always hoping people with perfectly healthy children are counting theirs too.

This is MY time of year to dwell. Aiden's 6th birthday is around the corner. With all the admissions and sickness we have had in the past 6 months, I have spent plenty of time on that dreaded 1st floor at ACH. Surgery waiting area is a place I typically run from, but you have to pass it when you are heading to the gift shop. That is where my life changed when Aiden was diagnoses with Biliary Atresia. Can you just IMAGINE him at 6 weeks old? Do you have a baby right now that you know? Imagine.. 6 weeks old, him being opened on a surgery table them investigating his liver, his abdoment..for his disease.. then finding it. How do they break that news to me? I remember I still was wearing maternity shirts, with a puffy belly.

When I was a child I wanted to be an actress... (also Miss America, Madonna, a vetrinarian, dog trainer, and waitress) I remember trying to cry on cue. Just doing my dramatics for my parents and thinking.. HOW does anyone cry on cue? Lets just say.. I got that skill down.

Speaking of crying.. you should see me at Aiden's games. What a dork I am!!! Aiden is in the midst of T ball. It has been so amazing. I think it sounds stupid, but honestly T ball is one of those things I can already forshadow will be the 'best memories' of his childhood. Joey is the best father ever to these boys. I mean sometimes I just think... HOW did I get so lucky! Watching Aiden in his tiny uniform with his short cute little legs, and hat that is a tad too big.. I just wanna run out there and squeeze him! Those are the moments that we never thought we would have and YES we are SOOO lucky and grateful for.

I just wanted to thank you guys for caring. Hermithood is that once in a while well deserved PJ time. That time where we lay around, snuggle, play in the yard, go to parks, and just BE. It feels So good!

The beat goes on.. I will be making some calls, shaking up some schedulers :D and then getting Aiden's surgery scheduled. Gee.. just what every mom wants to do in between cooking lunch, and doing laundry.

Have a great week.. PICS coming ASAP!! (probably later today!)

Love Lisa, Joey, Aiden and Mason

---

Tuesday, March 11, 2008 1:45 PM CDT

Let me just say, things have been hard lately. Internally. I just wrote this very long update, went back, re read it, and then realized.. that may be even too much for ME to share on my website. I am an open person, but sometimes it is one of those.. “unless you live it… it is hard to get it” things. To sum up my depressing update that I deleted, here are a few bullet points. (Class, you have heard this lecture before..)

1) The pain of watching your child be sick, and be different, is unbearable.

2) It is hard to feel different as a mom too. Late at night in a hospital… it is just lonely.

3.) But it always can be worse and so at the end of the day we are always still grateful.


OK with that out of the way, I feel relieved you haven’t suffered through the long version. So in the meantime I have some random thoughts/ stories.

A few weeks ago, Mason was in Speech therapy. His therapist was quizzing him with his pictures. Show a photo…. say the name in the photo

Jen (therapist) shows a puppy

Mason: “PUPPY!!!!!”

Jen shows a cat

Mason: “K K CAT!!”

Jen shows a house.

Mason: “HOME!!!!!”

Jen shows this photo…….




Mason says:

Wait for it…

“DADDY!!!!!!!”


HAHA HAHA HAHA This was so funny we all died laughing, I even stopped to pull out my camera to take a photo of it... Nothing like the honesty of children.

Anyway, we have been having so much fun with Mason. Mason is getting older and older, so not every funny Hawk story is from just Aiden, the resident comedian. Last night Mason had me and Joey in tears.

He was nestling in getting ready for bed and he held up his sippy cup and said:

“Beer!!!!”

“I wanna beer!”

Uhmmm?? Joey and I stared at each other with our jaw dropped.

Joey: “Mason what DO YOU want??!”

Mason: “Beer. PEEEEAASE!” he said shaking his sippy cup at us.

There was NO way, Mason was asking for a beer. What on earth?

We go to the fridge and ask him to point to what he wanted… and this is what he pointed to.

CLICK HERE FOR BEER PHOTO


Bears.

There are bears on his pediasure.

It was pretty hilarious. I thought for sure, he had been corrupted by Joey’s obsession with Nascar. But thankfully not. He just loves his pediasure, especially at bedtime.


Speaking of Bedtime… and Mason. (I am on a roll here with my segways.) Mason has just graduated to a BIG BOY BED!!!





I can’t even believe how cute he is in it. He loves to get in his bed, and cuddle in. He is so proud!





This morning, he was all cuddled up and I went and woke the boys up. Aiden whispered, “Mommy is Mason still sleeping? I want to see if he looks so cute!” Aiden climbs down from his top bunk and peeks in on Mason. Aiden said, “Oh My word! He is the cutest baby ever!” I don’t know about ever… yellow jaundice and all… Aiden was pretty darn cute as a baby.

Aiden has been doing great in Tball! His team is really good. Aiden hit two pitched balls (and these aren’t underhand!) and then one off the Tee. He isn’t by any stretch ready for the major leagues, but wow he is learning! I think it is really great! But Aiden is loving it, and that is all I care about.



Batter UP!



SWING!!!




Take a knee boys!



Aiden practicing his throwing.. Coach Daddy with him. (how cute is he in his uniform?? Joey I mean!)

Anyway, Things are ok here.. We are waiting for his cardiology tests, heart monitor etc.. still waiting on dictations from toledo. Sigh... it is one of those Hurry up and wait situations. Hopefully this week we will get it all scheduled.

It is hard, but I know we have at least found a reason for his problems.. at least a broad reason. I am relieved that we have at least come that far. I am waiting for Mystery diagnosis on Discovery Health Channel to contact me! (just kidding)

Anyway, Hope your week is wonderful.

Love from our family to yours!

---

Wednesday, March 5, 2008 7:04 AM CST

Last nights' night nurse.... LOVED her. SHe was precious! Comes in and says, "Oh I begged and begged for you Aiden. I haven't seen you since you were a round green baby!" It is pretty amazing when you take that photo in time and see where he has come from! We are so blessed!

There is an uncanny similiarty to the BEEP BEEP BEEP of an IV pump and an alarm clock. An alarm clock you can't roll over and it snooze on. Just have to wait for someone to hit snooze.

Aiden had a good day till about 1:00 and then he developed a fever, a rash, and started shivering and feeling nausious. But since he has the flu, that is normal. We did redo Aiden's labs because I knew those previous ones weren't his. They probably hemolyzed, but the new set was WAY more normal for him. High hemogloblin, hematocrit, RBC... the platelets did drop a lot and his wbc is are lowering but that is common with viral illnesses. (with infections the wbc increases and with virals illness the wbc supresses- just an interesting tidbit for the day)

Anyway, if all is good with the pedi on call today, Mr. aiden will go home to ride this one out. Hopefully with the tamiflu on board it will be much shorter than normal.

UPDATE: They are discharging him! YAY.... Home here we come! They ust came in and told me. I can't wait to get out of here!

We will repeat labs on friday from home, and hopefully back to normal asap!

THANK YOU for all your prayers! Thank God for good doctors, getting him in the hospital and safe and better so quickly.

Blessings from the Spa
Love Lisa

---

Tuesday, March 4, 2008 6:43 AM CST

6:20 Am "UUUUUhhhhhh Mommy, uhhhhhh are you gonna sleep all day or what!?"

:D :D

OK so he is feeling better! Praise GOD! Yesterday was so scary!

It has been a while, but I thought I would go on quick vent/rant

titled: TO the cranky Night Nurse:


If you are so lucky to be Aiden nurse, I realize you are human. I am sure you have many bad days your self. But leave them at the door. The families you are "caring" for are also having a bad day. And they get to be at your mercy. So if you feel like punishing someone because your car ran out of gas, or your dog ate your favorite curtians, or yet even worse you 'don't like one of you co workers' (and then decide to gossip about her all night in a loud voice) DO NOT TAKE THAT OUT ON THE MOM IN THE HARD, DIRTY, Chair/bed in the corner of room 485 NW!

If the mom is worried about her child, who has lived in and out of hospitals for almost 6 years, and she gently asks for a copy of his labs... DO NOT immediatly use this oppertunity to let all your frusterations out! JUST GET HER THE LABS! Don't tell her some crap about NOT being able to do that.. Just get the mom her labs! And remember the big smirk on your face, that dirty look you are trying to give me... I CAN"T SEE IT! YOU ARE WEARING A MASK! SO the dramatic pauses that you are throwing my way, with the blank look in your eyes only makes you look stupid. Just get me my child's labs, thank you.

And lastly, When it is 12:15 at night, and you are on break... the other nurses are talking about YOU. You are rude, and rudeness gets you NO where.

This has been a public message from your friendly chronic kid mom.

GO TEAM AIDEN!


~~~~~~~~~~~~~~~~~~~~~

OK so as you can guess I got a less than stelar nurse nurse. That hasn't happened in 3 years. The nurses at the hospital are just amazing, so I will just let it go. It isn't a big deal, really, just fun to vent about something more trivial than the reality of life sometimes.


Dr. cross just came in, she said that his chest x ray showed a general infiltrates, not an infectious pnuemonia, so it is more a viral thing. We are repeating his labs because his CBC was totally bizzare. He was boredline anemic! After my argument with nurse wratchet (hee hee) last night I finally got his labs back and I say, "Uh these aren't his".. that put her over the edge.

So we will repeat them because with no prompting at all Dr. Cross walks in and says, "we need to repeat labs, I think they hemolyzed or got mixed up, those don't look like his labs."

I told her the drama last night about not letting me see his labs so she wrote and order for it, and then said, "I am gonna put this isn't this mom's first rodeo in his medical charts." We both giggled like school girls. hee hee hee, that'll show 'em!

OK so Yes I know I am sassy, but I am just so happy he is feeling better! YAY Aiden! If he continues to improve we will leave tomorrow, if labs are actually that low and weird we will see hem/onc. Let them figure it out. Oh and Aiden will see cardiology today as well. Dr. Cross said, she wanted them to consult so we can get his heart monitor planned asap.

That is about it. Thanks for praying for him! I know our prayers were answered!

In His Grip, (even if I am not so sweet about a paticular nurse),

Lisa

---

Monday, March 3, 2008 7:16 AM CST

The test came back postive for influenza aka flu. Gee I could have told you that, didn't need to stick the 6 inch tube and saline up my kids nose, suck it out with another syringe.


SO they will start the tammiflu asap, as well as IV cipro. We don't have labs back or the chest x ray back, but if he has pnuemonia we will add one more antibiotic.

He was an angel for the x ray! He could barely stand, he said his legs were melting. :-( Then back asleep. He didnt' even wake up for the IV! I was like peeing my pants I was so happy.

Of course the only reason why he is so good is because he feels so bad. Poor baby. Also baby brother has a 102 fever. Poor Joey is home with him. I pray he does ok. We will fill the tammiflu for him in the AM.

Joey, the only one to NOT get a flu shot in the Hawk Home is the only one still ok. I hope it stays that way, because he has almost no days off left! I am worried about that for sure.

Anyway, that is the story. i am here, playing webkinz. Aiden's nintendo is home of course we have no video games here... But you are wondering why we need video games if he is asleep and out cold... well ME of course! I am totally addicted to the Super Mario Brothers on Aiden's Nintendo DS. I have made it all the way to world 3!

One more thing about Aiden... the amazing thing about fevers is that it naturally causes you heartrate to increase.. so asleep.. right now they just did his vitals and his heart rate was 117 ! Aiden's normally when he is sleeping is 50. I just wonder what his little body is thinking about all of this.

Please pray! Flu and tripple immune supressed liver recipient is NOT a good combo, and frankly I am nervous.

Lisa





~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Well one look at Aiden and it is a no brainer.. he is getting admitted. The lowest his fever hsa gone is 101.9. Currently it is 103. He has been sleeping pretty much since this morning. We are getting directly admitted so hopefully he can avoid the ER. So we are waiting at home to hear when his room is ready.

Dr. cross spoke with cinci, (we love them!) and they had it all planned out. Aiden will get a nose swab to see if he has the true flu virus and then if so, he will recieve the Tami flu medicine. He also is going on IV cipro, getting a chest x ray checking for pnuemonia, and then fluids, because he is getting headaches and looking like an episode is brewing.

Anyway, keep praying for our little patient.

Hugs,
Lisa







~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



Aiden has the flu. And has it pretty bad. This is the first time in 3 years I have really felt like a liver transplant mom. This is where the tripple immune supression becomes dangerous and we have to balance his supression and his ablilty to fight this. He has a 103 degree temp. I am trying not to freak. Waiting for the pediatrician to open her doors so I can find out what we can do for him.

Please prayer warriors pray for Aiden. I just am getting over this flu, and every minute I sat there with a fever and cough, I thought, "please GOD do not let Aiden get this!"

He is in my bed right now, wet towel on his head. Bless his heart, he asked for my "magical washcloth". I gave him tylenol which I haven't probably given since 2003. Aiden is the healthiest sick kid ever, and he never gets sick. I feel like someone put a pillowcase over my head, spun me around a few times and I can't get orientated. I really don't know what to do for him.

I guess... we ride it out?

I will update when I know.

Prayers please,

Lisa

---

Wednesday, February 27, 2008 8:33 AM CST

I am so disoriented... things have been...

CALM

Calm?? I am not used to that! I even woke up this morning not immediatly thinking that today Aiden would be admitted. We needed some reprieve. I just hate the hospital, and even hate more to see my vibrant happy child so sad there.

SO home we are still, and doing pretty good! Joey took Aiden to practice throwing on Sunday, and he said that Aiden got worn out quickly. Aiden asked to lay down and then came home and laid on the couch. That is about the only difference we have seen. He complains of daily headaches only first thing in the morning. I suspect whatever his body is doing at night causes headaches.

I am STILL waiting to schedule the heart monitor placement and stress test with imaging. I called and left a message yesterday again and today I will have my pediatrician's office call about it.

But honestly, over all things are CALM. Aiden had his first Tball game on Monday night. I was SHOCKED at how well behaved he was on the field! His head coach is amazing. Very serious and obviously knows his grits because these kids are really learning! Of course when Aiden hits or catches the ball he still does his traditional "thumbs up" at mommy. I love that.

When playing third, Aiden caught a grounder and then stepped on his base, then threw it to first I was so shocked to see him out there. He is getting older! At the end of the game the kids line up and pass one another with their 'high fives' and say the usual, "Good Game... Good Game.. Good game..." to each kid. I see Aiden high fiving everyone, yet he was the only kid saying, "Silly game... Silly game... Silly game.." Still my little comedian.

Mason has been doing so good! I swear everyday, I think, "WOW did he just say that??!" What a miracle he is! I feel so lucky that today, is calm. Maybe it won't be calm forever, but today is calm. It seems like over the past few months I was grasping and searching for a breathing place. A moment where I could just catch my breath. SO many admissions, trips, and doctors. I hadn't lived that life in so long, that I felt like I was just circling the drain. More like circling the toilet bowl!

I know that God has allowed these things to happen, and even though they make no sense, it is supposed to be for the "good". When we were going to go to Dr. Axelrod in NY, it seemed like the right place. Although I was not happy about it. It was so strange how the whole Addison's disease was thrown in there, blindsighted all of us. In that one month delay we found Dr. Grubb. He sits on the board of directors for the youth dysautonomia foundation, and is the top in this field. It was like God was saying... "Nope I don't want you in NY.. I want you with THIS guy."

After meeting him Joey and I literally looked at each other and just smiled. It was all we needed to feel some hope again. Of course all the terrifying news we got in Toledo quickly took that happy feeling away and I just started questioning again. All last week I had been praying just simply for Peace. Peace in my heart. I needed CALM. Lost luggage, wrong cities, paying $200 more than planned on jackets, car seats, etc.. all of it was like the straw that broke the camels back. So Peace and CALM was all I needed. I wasn't asking for this to all end.. just needed to regroup.

It is His divine timing that Aiden's first T ball game has begun....And that in the mail arrived hand signed from our new Doctor a book. "When Bad Things Happen to Good People." With this was a note from Dr. Grubb. He was thinking of Aiden and our family and it was a Gift to us.

What doctor sends a book like this? And isnt' afraid to tell you that he has us in his prayers? The peace came. The prayers we had asked were answered. OK so there is still no magic wand healing for Aiden. Yes he is still a sick little boy, but the Peace has come and the Calm has returned. We are refueling our engines for the next moment in time when we will need it. But until then, we will be sitting on our blankets, listening to the crickets chirp and watching our almost 6 year old boy catch grounders, step on the base, and then throw the ball to first.

It is a beautiful day, Life is Good.

Lisa

---

Tuesday, February 19, 2008 10:48 AM CST

It's that time again!!!!

Aiden's first T ball practice today!

YAY Aiden!!

His has graduated to the T-6 group (for kids who will be 6 in the season) I can't believe how old he is getting!

I am so happy for him. We just went to the store and picked out his new T ball Cleats. He has been wearing all over the house.. (and I have wood floors ugh).. But it makes me so happy!

I did get that pit in my stomach knowing I have to tell the coach that Aiden is getting a heart monitor placed in his chest in the next week or so, so he will miss some games. but once it is healed he will be back in the "swing" of things.

I am happy for him. Daddy will help assist the coach again. (aka be closer to Aiden to discipline him when he is getting the other kids rowdy).

In the meantime, I am feeling MUCH better about all that happened in OH. I spoke to my pedi (love her) and she always makes me feel better. We were all hoping he would simply go on betablockers and then be better. That is not at all the plan, and won't be.. so it was shocking. But my pediatrician reminded me, 'it is never that easy with Aiden but it will be ok'. She is right. We already resigned to the port and fluids, so if the flourinef doesn't do the trick (and my pedi doesn't think it will) then ok.. so he gets a line.

I am a bad mommy I didnt' even call cardiology yesterday and as of right now at noon.. haven't today. BUT I will.. I just needed a break. A moment to breathe. If they leave these things up to me.. I will always go the path of least resistance. (aka denial) But I know what best for him so today I will call and schedule his stress test, and surgery.

But only because I am a child (maturity of approximatly 9 years old) I will now proceed to say exactly how I feel about that.

A hem.... (clearing my throat)

NOOOOOOOOOO!!!! This stinks!!! Poo pooo!! STINKY BUTT!!! WAaaaaaaaa waaaaaaaa!!! Doodie head!!!!! I HATE HOSPITALS!!!!!! HOSPITALS ARE NO FUN!!!! Boo HISSS Boooooooo Hissss!! Booger Brain!!!!

A hem.....

OK so that feels better.

(and you all are thinking... "why do I READ this site??!!")

So, do you want an awesome Mason's update??

Today I am sporting a pink bracelet he made me in therapy. He beaded the little pink pipe cleaner and made a cute bracelet. I am loving it! His therapist told me today that this was his BEST day of therapy ever! Can you believe it has been one year???? YAHOOOooo...

And the most exciting news.. I think in the next 6 months Maosn will be done! He is doing great! Today in the parking lot at therapy he said, "Over there! Big truck!"

Mason is amazing. I am so happy for him and me and joey. He has to get yearly MRI's on his brain but that is ok. He is making leaps and bounds in therapy and we are overjoyed! I think God finally cut us some slack. Phew!

Well off to go work on my stationary orders! I am so excited! I will be taking more photos and posting them here! And please keep telling people about the cookbooks! I have a ton of them left! I need to sell them, so I need your help!! HUGS

Proudest T Ball Mom ever,
Lisa Hawk

---

Saturday, February 16, 2008 2:41 PM CST

HOME!!

We arrived last night at 2:00AM. Poor Joey! The rest of us slept like babies (well one of us is a baby... but you know what I mean) But none the less we are home.. safe and sound. I was sure with the "luck" we were having on the beginning of the trip, we would run out of gas or something worse on the way home. But fortunatly we were all safe and sound.

We decided to stop in Chatanooga on the way home, see some sights, and do something "fun" before I had to get back to cleaning house, cooking dinner, calling doctors, and filling Rx's. So we saw "Rock City" and did the incline railroad, and Ruby Falls. All three in a few hours. It was like a feverish rush to make sure we had fun.. but take my word for it. It was NOT fun. At least for me and Joey. I mean it was ok.. but this trip was very stressful. Denial is much harder when you have an order for a heart monitor in your hands.

In anycase, I am just trying not to think about it all, (yes back to my denial) NOT handling it is much easier sometimes than dealing with it.

I am loving Aiden's new doctor. He was just very special. No wonder so many people rave about him. He was very compassionate and just understanding that this was a long journey. It seemed to be a theme for his patients. Most of which come from all over the US to see him.

It seems weird to think.. Yes we finally know that when Aiden has his "episode" is is due to autonomic dysfunction. That his brain tells his heart and then the rest of his nervous system to go hay wire. A lot of people (including myself and Joey) are just confused about this complicated process. I will try to (with the help of DYNA- a site for kids with this) sum it up:


"Dysautonomia is a pretty big word for a kid, and it is pronounced dis-auto-nome-eia. This means that the automatic things your body always does may not be happening so well. Dysautonomia is a dysfunction of your autonomic nervous system. Obviously, the autonomic nervous system is very important to our bodies. It controls the insides of our bodies. Things like the heart, stomach, intestines, blood pressure, body temperature regulation, endocrine system (glands), pupil dilation, and muscles (in the skin, around blood vessels, in the eye, stomach, and in the heart) are all controlled by the autonomic nervous system. A malfunction of this system impacts every organ of the body. Most of the time we are unaware of our autonomic nervous system working in its usual "involuntary" manner. It controls our systems "automatically" and we usually take it for granted. Essentially, your autonomic nervous system is ALWAYS working to keep normal internal functions operating.


Children who have dysautonomia struggle with some of the most basic functions that healthy people take for granted, beginning with getting out of bed in the morning. Each day and each moment brings new and unexpected obstacles. Yet, despite the betrayal of an uncooperative body, these young individuals face life with profound courage and incredible strength.

Since youth with dysautonomia are usually normal in appearance, it can be a hard condition for laypeople to understand. Even the general physician sometimes misses the clues leading to a proper diagnosis. The symptoms are often difficult for the young patient to verbalize and the conditions are not always promptly recognized. Traditionally, cardiologists and cardiac electrophysiologists can efficiently diagnose and treat dysautonomia children. Sometimes neurologists and other pediatric specialists get involved as well. Families often find themselves desperately traveling great distances to the few pediatric dysautonomia specialists throughout the country for a proper diagnosis and innovative treatment. "


Aiden currently has not been diagnosed with the exact root cause of his dysfunction. It could be from his heart or autoimmune. If it is the heart hopefully we will be able to surgically repair it.

It is soo still in it's infancy. I feel like we just jumped off one marathon, and never even got to catch our breath for the second marathon.

On monday we will schedule Aiden's cardiology appointment. They will place a Reveal DX in his chest just under his skin. This will measure every beat for up to 3 years. We will KNOW for certian if his heart is indeed stopping the nights of his "episodes".

Then Aiden will have a stress test. This can help also tell as they inject some dye in his heart if every single thing is perfectly formed.

I guess I am still just not believing all of it yet. I sit and wonder..what if they are wrong? I know everyone says he has this rare problem.. but I keep thinking.. what if they are just wrong? I feel semi untrusting of the "system" now. It will take time and some education for me to really understand it. But as his mother I know I have done all I can. I would travel to the edges of the earth for Aiden.. but I can't have any control over this stuff. God has his hands on Aiden.

Anyway... so that is it for the tutorial of dysautonomia. Dr. Grubb said, We won't find Aiden's type in litature sincehe is presenting in an extreme and severe way. (of course) I just hope we will have some answers and treatments.

I am placing the Rx for his flourinef this afternoon. If his transplant team Ok's it.. we will begin that. Hopefull that can help hydrate him, as long as his Potassium doesn't bottom out.

Anyway... Thank you for all the card orders!!! It is so helpful to have this fundriaser and something for me to do. If you are waiting for a reply from me, check your spam box. RolexH must be similiar to some spam addy selling watches. I didn't think about that when I named the dog that.

Much love and hugs!

Step one down.. Find the right doctor for Aiden

Strep two down.. get a diagnosis

Step three ... CURE HIM !! That is all we have left to do!

---

Wednesday, February 13, 2008 10:23 AM CST

And people wonder how cheryl and I are friends through all we have been through... there is a secret formula.

Yes it is the xanax.


I am keeping that hilarious rendition of the "Hawk family adventures" up for another update.

Yes all the information below is true. We were like some ridiculous version of Planes Trains and Automobiles. For a moment there we were semi panicked (gee considering my babies had no JACKETS!) But the yesterday was much better ... at least mason got out of his "bucket".

I won't kill you with the suspense from the appointment. The dramtic takes of our family can wait for a moment.

Dr. Grubb with in 4 minutes of the appointment said, Aiden had severe autonomic dysfunction. After almost 4 hours with him (YES IN THE ROOM!) we have created our first plan for Aiden in 2 1/2 years.

Dr. Grubb began to tell us that he was very very worried about how severe Aiden's case was and that he felt like we needed to rule out some other potential life threatening things, I burst out into tears. This doctor reached out and held my hand! He held my hand for about 5 mintutes. (mind you I am not a touchy feely person, so I was sort of "over it" after 2 minutes.. but how sweet is that?!) He thought I was crying from sadness.. but I was able to choke out... "I am so RELIEVED we found someone who knows what is wrong."

He said Aiden had every single symptom of some of the worst "episodes" of autonomic dysfunction. He said, to other pysicians this would seem very outside the box, but Aiden IS an outside the box child. He has had a liver transplant. (This was crying fit number two in the office for me)

He said he is highly suspicious that Aiden's heart is actually STOPPING for moments at a time. He does not want to do betablockers he is concerned Aiden will bottom out. He wants to do more very specific function tests of his heart. He wants to insert a heartmonitor into his chest. It will record every single beat for the next 3 years if we need it to. The will be doing a Stress test with imaging. We will be starting on a medication called Flourinef (which ironically is the treatment for Addison's).

It was so scary hearing what is wrong with Aiden. He said, most people with this type of dysfunction have much milder experiences. He said that Sometmes they crash.. Aiden only crashes. Wakes up and crashes.

The relief of finding our doctor and having one that is so smart and caring is only half of the gamut of feelings we have. I am horrified to be honest with you.

Dr. Grubb said he has seen this in another child. He said he had that did exactly what Aiden does. He had hirshprungs (spelling?) He said he would do the exact same thing when he was running around. He was also a 5 year old little boy. A hospital at Duke reffered him to Dr. Grubb. Dr. Grubb had the same suspcision there was some anomoly of his heart as Aiden. The cardiologists had already echoed and echoed this child. Dr. Grubb did the stress test like they will do on Aiden, and discovered a tiny abnormalty that would have never been seen on echo. It could have easily killed this child. They sent him to the top ped heart surgeon in the country, and fixed it.

Dr. Grubb said, I must find out if this is also happening with Aiden.

I was horrified and happy all at once! Please God if there is somehting like that wrong, thank you for leading us to this doctor that may be able to find it. What is a mother supposed to feel?

The other major option is that Aiden has a rare autoimmune disease that is blocking some neurotransmitters of his autnomic nervous system. Aiden has a sympathic nervous system disorder because we only see the parasympathic system goinbg bizerk. (low HR, low BP, hypermobile gut, non sweating, etc... )

So it is either heart defect which is first to rule out.. or autoimmune disease causing it. In anycase he DOES have dysautomonia.

So anyway, I only have moments more to update, since we will be driving home with our rental car instead of flying (can't imagine why?) We will be home in the middle LATE tonight. (joey is insane)

I just wanted to say that it worked... 2 1/2 years of searching and praying for some clue... it finally happened. Aiden has a severe form of Neurocardiogenic syncope Or NCS. He said it is more of a reflex syncope. He said, it falls into the catagory of "other" on his diagnosing groups.. but whatever it is.. it is serious and it is rare. And it is a diagnosis.


This morning my husband woke me up with a valentine's card. Aiden drew me one on a napkin. Mason kissed me with a runny nose. Here we are, Planes, trains and auromobiles.. no clothes, no money, no phones... getting a terrible diagnosis for my child..and through it all no matter what, we have each other. We will get through this.

Thank you for caring and waiting along side us for this news. More details coming soon... and of course photos of my boys playing in the snow.

With love, gratitude and still HOPE
Lisa, Joey, Aiden and Mason







~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Previous update:


“Icy Storm Snarls East Coast Travel” The Associated Press.


Hi all. This is Cheryl, Haley’s mom, updating for Lisa.

The good new..... the plane didn’t crash.

The bad news…….their connecting flight to Detroit left Atlanta 10 mins early….and left the Hawks at the airport.


The good news….. Their luggage made it to Detroit

The bad news…..The Hawks did not.


The good news….They were able to catch a fligh to Flint, Mich.

The bad news…..That’s not Detroit.


The good news….The boys are seeing LOTS of snow

The bad news….No luggage=no winter clothes. Joey wore a short sleeved Tshirt to travel in (which begs the question..”What were you thinking? That maybe it wouldn’t be cold in Michigan?”)


The good news….In spite of having it all set up in Detroit, they were able to get a rental car in Flint.

The bad news….no car seat.


The good news…”Necessity is the mother of invention”, and apparently a car seat was devised….similar to, as what Lisa called it..”A Bucket.”

The bad news….once at the hotel (in Flint), they were unable to find Joey’s cell phone and Lisa’s credit card.


The good news..Lisa had her cell phone. And they were able to rob a bank for some money. NO! I made that part up….I am not sure how they resolved the credit card issue…only that they were able to spend the night, and buy a few jackets and mittens.

The bad news…they had to buy new jackets, hats and gloves….and they live in Florida.


The good news….their luggage is safe at the Detroit airport.
The bad news….Flint is a long way from Detroit….and after they get their luggage, they have to drive from Detroit to Toledo, in the snow, for a 2:30 PM appt.


The good news….Aiden gets to finally see the specialist today!!!!

The best news…..Lisa, Joey, Aiden and Mason have us prayer warriors on their side.


So, stop right now and pray with me….or say your own prayer…..

Dear Lord, Place your huge hand of protection over this special family as they travel today. Clear the path before them. Help them to overcome the obstacles in their path, and to see them for what they are…..Satan’s attempt to beat them down, to make them more vulnerable during a trial. Remind them that YOU are in control. Remind them that we, as a people, the Lord’s army, are right there with them fighting. Lisa, Joey, Aiden, and Mason are children of God. They are YOUR children…let them feel your presence, your strength, your comfort, your peace, your love, and even your sense of humor. Let them know that they will always be ultimately victorious in the big battles and the small. Because they are aligned with You. Thank you for allowing us to be even a small part of their journey. In Jesus’s holy name, I pray. Amen.

Lisa, know how much I love you and your family, and keep in mind, that used wisely, Xanax can be your friend.

XOXOXOXOXOXOX
Cheryl

---

Monday, February 11, 2008 8:02 PM CST

UGH after writing a pulitzer prize winning journal update.. my computer ate it. Argh. So this will be much more mediocre, you can only have greatness like that once in a lifetime.

OK trying again:

We are packing.. almost ready to finally leave for Aiden's appointment. I am so hopeful, and excited. I barely feel scared anymore. I just feel GOOD about this. I know we have a great chance of finding the right diagnosis and doctor for Aiden. Dr. Grubb sits on the board of director for www.dynakids.org a website for pediatric autonomic dysfunction. If this is indeed what is wrong with Aiden, I think he will be able to help us.

I thought I would do a generic family update. It keeps my mind on other things. Because we ARE other things... than sick. We have many more facets than being a family with a chronically ill child. SO here is the update:

Things have been good. Aiden had his kindergarten review today. I am about 20 days behind on his school year on homeschooling. ( figured he would have missed more or the same if he was in school!) But the good thing about homeschooling is, it will take about 3 days to catch up. So I am bringing it with us for the trip. Today we worked on counting with coins. Basically counting with 5's 10's and 25's. He has the penny and 10cents down, but is working on the others. He has been doing his math and writing and reading and excelling in all three. But when we reviewed his handwriting wow.. he missed 8 lowercase letters. I thought it was hilarious because it is totally my fault. His circulum has them only using cursive! And printing has been not used as much. Bizarre I know. So we have some work to do.. but since I am the teacher, principle, and lunch room lady, I get to make the rules.

Mason is doing great! He can RUN! It is hilarious. He has his little arms moving all over the place! He meets one milestone after the next. The only OBVIOUS (and it isn't very obvious) delay is still in his Physical Therapy. He is learning how to jump and kick a ball. His speech is awesome! well let me say, It is AWESOME when he isn't barking and "ruffing". He is still obsessed with lambs and Elmo and Krispee Kreme donuts.

I have sold a bucnh of cookbooks but still have a BUNCH left. The exciting thing is the stationary has been a real hit! I have had a bunch of orders, and have loved spending the time to do them. email me if you are interested! rolexh@aol.com

Well... I am drawing a blank. I have nothing much to offer. Even though I am making an effort to "think" of things other than the fact we are finally leaving for Ohio tomorrow.. I can't stop thinking about it. I am on my knees begging God to give us some answers. To give us some options other than the hydration. I pray he sees Aiden and has clarity and understanding right away. I pray Aiden never has another "episode" again. Ever. I just want that healthy Aiden back. We are full of hope that this will happen.

pray for us! I will keep you posted. I will update while we are there. Thank you for your prayers, and well wishes. THANK YOU!

Hopeful and thankful that it is finally here!

The Hawk family

---

Friday, February 8, 2008 7:33 AM CST

THANK YOU for the notes in the guestbook! You guys are so encouraging! I am feeling much better, mainly because Aiden is feeling much better. He even got himself is big trouble yesterday for throwing toys over my neighbors fence. He was like Denise the Menice. I had to drag him over there to apologize and then made him do chores in the yard. My neighbor wasn't too happy because as he threw each toy they squarely hit her HUGE window on her deck. He has learned that lesson. I asked him WHY he did it, when he knew that we weren't to throw toys over the fence and he said, "Because Mason thought it was funny."

Sigh

THIS is why I am happy homeschooling my little Aiden. Chris Farley over here would jump off a bridge if he knew someone would laugh.

Sigh

Any other news.. Staphy the abcess came back on the rest of it's cultures as positivly MRSA. Of course it did. So we continued our antibiotic treatments. Joey, Mason, Aiden and I all had to stick Bactroban in our nostrils, and then.. get this...

The boys had to take a bath in bleach! Our pediatrician said, "Fill the tub with water and then pout 1/4 cup of BLEACH in it."

Ummm???? huh????

She says "It is safe.. it is less than a swimming pool."

Ummmm??? HUH???

So We did it last night. It gives another meaning to the term "toe head". When people ask me, "where did your boys get that blonde hair?"

I can now say, "A little bleach in their baths doesn't hurt!"

Seriously talk about making a family feel like they have the plague. Aiden's sore on his leg is now completely gone. Not even a scab left. So we are done with the antibiotic cream. I guess it is very common and the media blew it out of proportion, but I can't help but wonder then why I just dipped my child in bleach. I am just going with it though.. asking no questions.. just going with the flow. haha

In other exciting news.. I have had every form of nightmare about our upcoming trip to Ohio. Here is the theme..

1) we arrive there and there is no appointment for us.

2) we see the doctor and he says Aiden doesn't have dysautonomia

3) we see the doctor and he says He DOES have dysautonomia but there is no treatment

4) We try to get to the appointment but we get lost and can't find it.

These honest to God have been the themes of my dreams for the last few nights.

I think I need a dream interpretor. What do you think it means???? Gee.. I wonder.

I was talking to Cheryl, (angel Haley's mom) and she gave me some great advice. Cheryl has been walking Aiden's journey with me everyday for the last 5 years. I love this woman and her family. I know God placed us together so we could rely on one another, and lift each other. So I called her in a fit about the Port. She knows all too well the dangers of a port and the benefits of it. I told her, "I can't believe we are back here again. We aren't supposed to get a port this far from transplant! I just can't believe we are here again. How am I supposed to be in denial when he has an IV sitting in his HEART!?"

Cheryl simply said, "Lisa, denial isn't working for you anymore. Lets try acceptance."

Ahhh ouch. that was wise, painful, and true.

OK so after so what if we have back tracked and now need a port. So what? We have done everything as parents in our power to hydrate him, keep him healthy, give his meds. This is best for him. When he had his broviac (a different kind of port) when he was a baby, it was so nice to him to not need to be poked. He had that IV for 15 1/2 months. It was a part of him. I even scrapbooked it! This will be ok. We will just do it.. accept it.. and move on.

So things are ok. We are hanging in there, even though the suspense for the appointment is just killing us. I am also hopeful for Aiden. He has an appointment with cardiology in about an hour here. Seems weird that a cardiologist will be one of his primary doctors when he doesn't really have a heart problem.

In other news I have done ALL my stationary orders!!! It has kept me sane and I have loved doing it! I can't wait to hear if people like their cards. Please if you are interested, please email me. I am also doing thank you notes, book marks, and others. My email is Rolexh@aol.com

If you order from the site, there is no shipping.. and don't forget to get your cookbook too! All money raised will help pay for Aiden's medical treatments. :-D

Anyway, Thank you for the love and support. It always lifts us up to know that people are praying.New photo update coming soon...

Only 5 more days till we leave!
The Hawk Family

---

Tuesday, February 5, 2008 2:42 PM CST

HOME HOME HOME HOME

WHOOT WHOOT!

So we renamed "Lumpy the Lymphnode" to "Staphy the abscess"

Aiden's transplant team just reassured us that MRSA is a common bacteria that the media has blown out of porportion. We are all sticking some cream in our nostrils, giving Aiden oral antibiotics, and keeping a bandaide on 'Staphy.'He should be fine from that.

PHEW!

Other than Joey singing "staph-al-coc-us" around the house we are ok! The song is more of a rap. But in anycase it is annoying.

We are recovering. A large bag of M and M's just helped. I was thinking of getting a pill container and putting an M and M in each one. Then I can be all dramatic when I am "popping my happy pill".

Aiden is pooped and tired and crying and whiny. But mainly because he misses his video games. (I wonder what Mason's excuse is? )

I am getting ready to host a Bridal Shower at my house on Saturday for my oldest friend Jennifer. Everyone is so sweet and we have made it a pot luck! Nothing like a good Italian family to bring too much food to my house. (praying for leftovers) But the Bridal shower should help us get back to normal a tad.

I am dedicating this "update" to nothing negative. I just can't cry anymore and feel sad anymore. Just like others are blessed with their healthy kid.. I am still so blessed with mine. I am off to drink some coffee, pop one of my chocolate "pills" lol and get outside and enjoy what is left of the glorious and HOT (80 degrees) floriday "winter" day.

In His Grip,

Lisa

---

Tuesday, February 5, 2008 8:02 AM CST

We are hanging around here for a few more hours.

The abscess culture grew staph bacteria. Probably MRSA. What seriously are the odds??

we have made a tough decision. If Dr. Grubb has no options for Aiden next week. Aiden will be getting a port.

I don't even like to prepack his bags to the hospital because it just says, "I am sick". But a port? How do we live in denial when he has a port? I can't even talk about it.

I am speechless. This is one of the hardest things I have ever watched him endure. One of the hardest things I have endurred.

Just Please... if you are blessed with one or more healthy children. GO NOW and hug them. Don't be afraid to say to say that you are blessed. You are sooo lucky! I would give my life to have Aiden be a carefree healthy child. I would give anything to give him this childhood back.

I will update when we are home.. till then.. I am off to play videogames with Aiden. We will pass level 4 before we leave. I am determined.

Hugs
Lisa

---

Monday, February 4, 2008 10:06 AM CST

MY CHILD IS PLAYING VIDEO GAMES! YAY.. ok so after asking 4 times and Aiden bursting into tears.. I hunted them down and now he is playing video games. That makes my day.. Phew.

This morning was rough because the "lymphnode" that he had on the back of his leg was not a lymphnode but actually an abscess. So it had to be lanced. Poor Dr. P had to sit on Aiden's legs, and she got a nice culture of it. (just to double check for MRSA -EEKS!) He will start on a new antibiotic and I am all nervous about it. Just because of the allergies etc. I have seen him have anaphylaxis to antibiotics and honestly I am just a tad traumatized. So just say an extra prayer please.

He got his labs drawn. My little boy who used to bravely sit in his chair and put his arm out, has now reverted back into screaming and hitting and crying. It hurts my heart.

But now we have video games, and life is better here in room 484. Of course now the ritual of Aiden making me play the "hard" parts of his video games has just began. So I will be playing SpongeBob for the next 24 hours, I am sure.

We have booked our flight to Toledo (via detroit) I am so excited and nervous. But more hopeful than anything. It has to be better than NOT knowing! At least we will now have an option for treatment. NOT KNOWING is worse.. even if he says, "yes it is dysautonomia and we aren't sure if we have a treatment, but we can TRY x,y.z" then it will be better than this. This is no fun!

Anyway, I am just trying to remain as hopeful as possible! I just know we couldn't get THIS far to be left hanging out to dry. God will provide. I am certian.

I will update with labs soon. Thank you for the amazing notes in the guestbook. I just sit and read them and feel so lifted. XOXOX

(emma thanks for the tip for the guestbook! I will do that)

XOXOX
Lisa and Aiden

---

Sunday, February 3, 2008 9:04 AM CST

8:30pm Update:

Aiden and Daddy are currently in the ER STILL. It is a sad thing when hospital has no room at the inn. That means.. too many sick children. In the mean time, I am home with Mason. I was sitting on the couch watching the 5th repeat of Elmo saves Christmas, when Mason got off the couch walked over to the CD player, and said, "Mommy... I want DANCE!" He wants to dance. Dance? Now? I don't want to dance... but I get up, put in his little songs and we dance in the kitchen. Mason dances so hilarious that I couldn't help but laughing. I swung him around and he giggled and squealed. My heart explodes with love for this little baby. He was a Gift from God.

Tonight something hit me.. and I don't even know if this is true or possible or anything.. but a question keeps getting repeated in my brain. "Is this progressive?" Meaning... why is this more and more often? Is he just getting worse? Will this just get more worse? Is this progressing? Am I in denial? Just because it doesn't offically have a name, until Feb 13th at 2:30 PM (we hope!) is this something that is just gonna get worse?

I feel like I am sort of getting out of the 2 1/2 year denial stage and suddenly the panic button was hit in me. I don't like that feeling. I guess a good cry can help. But it is kind of hard to cry when your 2 year old asks you to dance in your kitchen.

Ahhhh sigh... sigh..

So anyway, Aiden's peidiatrician was on call today. She came in, did her stuff... and I we discussed the Addison's. She said, "I am not worried about it.. He has dysautonomia. He needs to be treated asap." 10 more days.

The flight has been booked. Feb 12th we fly in Detriot Michigan. Arriving at 10:13 PM (help me Lord) By the time we pick up our rental and get a hotel it will be past midnight I am sure. You are probably wondering why we are getting there so late. Joey has a "blueberry meeting" at 2:30 he MUST attend. It is a state wide meeting about.. umm .. blueberries. Uh ok. whatever. I guess saving the citrus wasn't enough. So after that "crucial" (wink wink) meeting we will leave.

I am dreading it. I am waiting for it. I am praying that this week flies by.. but in another sense I never want it to happen. I just don't know if there are words in the human language to describe my inner feelings on this. Lets just say it is exhausting thinking about.

Anyway.. see what happens when I stay home with Mason and not sit in the hospital with Aiden? I get TIME... to THINK...

Anyway, thank you for the prayers. And the guestbook entries. A little tidbit about the guestbook.... If you have dial up, or a slow connection and can't ever get it to load up. You can just simply hit the "X" button.. Or the STOP button (right next to "refresh and Home" so click on the guestbook.. let it load of a second.. and then hit "x". (not like closing out the screen just stop the page) then the guestbook will magically apear. I know this because I am on dial up (gasp) and that is the only way I can load it.

and yes.. that may or may not be a hint for you to sign my guestbook! LOL

HUgs and Love
Lisa and Mason
desperatly missing
Aiden and Joey.



3:00pm UPDATED:
Just got labs back. we are still in the ER. waiting for a room. (why don't they just dedicate one for him already?) Labs indicate that this is a pretty bad one..('episode") his WBC is 22,000 and his Hemaglobin is 17 (normal range is 10.2- 12.7)

Potassium is 4.0 which if I remember correct is normal. It would probably not be normal if he had the Addison's.

The ER doctor today is a new one... handsome but not so bright. I look forward to seeing our pediatrician in a few minutes. IN the meantime, Joey uplugged, and dragged a TV with video game attached from another ER room. The lady said, "you can't do that." he just did it.

Aiden is playing NHRA drag racing video game. Well I should say, Joey is playing it and Aiden is asking for "his turn". I on the other hand have blown my diet and just ate the hospital's version of Superbowl Sunday's hotwings. I think I am regretting that.

IN anycase, here we be. Joey is trying to force me out of here since I will be here all day tomorrow. I don't want to go. There is no other place in the world than I want to be, when Aiden is sick. I know Joey thinks it "helps" me.. but it doesn't. It feels like part of you is missing when they are in a hospital. Little mason is with my parents shopping and running errands. God bless them.

IN anycase, keep praying! This is becoming all too familiar. I think I am just about at the brink and am thinking a port MAYBE the way to go.

Life is sooo good when life is good.. life can be very terrible though when he is sick. SIgh


Previous Update:

Aiden is sick... he is in the ER..He is getting admitted again. Please pray.

this sucks

---

Friday, February 1, 2008 12:51 AM CST

We have taken a strange and difficult turn in this road for a diagnosis. The Addison's testing is scheduled for Feb 11th at 7:30 AM.. BUT....with some serious thought and discussion, we have decided, there is no real point in testing Aiden for Addison's. Endocrinology spent a long time on the phone with me, they said they wanted very badly for little Aiden to get the testing he needs in Toledo for dysautonomia, that they would do this test to appease the doctors that wanted it.. but the endocrine said they already know he will fail the adrenal stimulation. We know it. He has been on steriods for almost 6 years, she said, his adreanl gland will defintly be deficiant, and that it will be test with no outcomes. She said, that it won't be accurate, He will be techinically positive for Addison's but not actually have Addison's disease. She said she FIRMLY believed that he is not having Addisonian crisis.

After crying, crying and crying... we have decided that as his parents we will NOT put him through anything ANYTHING that would be pointless. We are planning on canceling the Addison's testing with the reccomendation of the endocrinologist. (I havent' told our pedi or the dysautonomia clinic.. but I AM HIS MOM.. and I will not do it to him for no point) The endocrinologist was very sincere, and very caring. She just wanted so bad for Aiden to not have a false diagnosis of adrenal insufficency. She said.. HE techinically DOES HAVE ADRENAL INSUFICIANCY... IT WILL BE POSITIVE...BUT it is NOT causing these terrible episodes, and stress on his system. It is positive because he has been on steriods for 6 years. No need for his adrenal gland to work.. when he takes the medicine for it daily.

Aiden's pediatrician parroted this exact exact exact same thing just days ago.

It makes me wonder why we went through this hell? Why did we when we were so close get a call from the NYU doctor and be put on this wild goose chase? WE had hoped it was Addison's. The treatment he is already on. The side effects he already has.. it would have been so much easier to say that this stress is simply steriod induced.

So.. why? I don't know. Maybe God just wanted us to see Dr. Grubb? Maybe that this whole thing happened so we could go to the RIGHT doctor for Aiden. Maybe He intended this whole thing so we would have answers, and then finally some peace.

IN any case, we will fly to Detroit Michigan, rent a car and drive to Toledo. We will meet Dr. Blair Grubb.. and finally hear if this is the end of this incrediable search. The final diagnosis.

My heart has broken because I don't want Aiden to have a disorder where his brain tells his heart not to beat properly, his lungs to stop breathing, his kidneys to not function properly, his GI tract to dump fluids, his body to not regulate his tempature, his veins to swell and dialate... this is systemic. This was not what we wanted.

But we will await to hear. In the meantime, I am devastated. I am trying to cope and hang in there for the 11 days we have left before this answer. My parents have the boys right now, and I am about to dive into some card making.

Praise God for protecting Aiden from even one more IV. Thank God our wonderful team of doctors. He has elminated an unneeded test for our precious child. If this test will just show adrenal insufficency anyway... why bother? No more boo boos for my child. He has endurred more in his 5 1/2 years than 10 people have in a life time.

Placing our Hopes in God
Lisa, Joey, Aiden and Mason

---

Monday, January 28, 2008 11:51 PM CST

Over the last week or so.. I have come to 2 conclusions.

1) waiting for an appoiintment that decide's my child's future prognosis is incrediably unbearable.

and..

2) more people signed my guestbook when I talked about diahrea than ever before.. you all are twisted like me!


SO instead of telling you the boring details of how it feels to sit and watch the clock slowly tick by waiting to go to Cincinatti, (14 days and counting) I thought I would instead share some of my latest hobby/ obsession!

This is also fundraising venture number 2!

Take a look:














I am making homemade.. monogrammed stationary. I am selling them as a fundraiser they are made on nice quality thick textured cardstock. For a set of 8 they are $12.00.

I am making thank you cards, some beautiful book marks, valentines, and other fun cards. It has kept me sane and happy over the past weeks and I am just feeling like it will either be my hobby.. or it can possibly be a nice little fundraiser. I am planning on presenting these and many more I have made to some local shops.

Pray it is successful. I am including free shipping to all caringbridge orders! Just email me if you like these cards at Rolexh@aol.com Mention what innitial, what color schemes you like, and I can make them!

OK seriously people, don't feel pressured that everytime you come my site I am hitting you up for fundraising, but I just know that I stay home with the kids. I don't make money to help. Joey works 3 and 4 and 5 jobs. He is the hardest working man I have ever met. If you only knew how this man worked to provide. I just try to do my part. I hate fundraising.. I hate medical bills... but if we can make an item, such as the cookbook or the cards that you would benefit from.. I feel like I am helping out in some way too.

Anyway, If nothing else.. it makes that ticking ticking clock that beats me down, a tad quieter. It helps dull the anxiety I feel everytime I think about Aiden and what tomorrow may bring. Tonight Joey was with the boys in the bathroom brushing their teeth. He called me into the room. He showed me something on Aiden's leg. On the back right inside of his knee there is a grape sized lump. It is hard as a brick. I am sure it is a weird big bite or something.. but it only reminded me that until he is finally diagnosed.. everything, could be the next symptom.

We just want peace.

So please keep praying... and God bless you for being there for us. Your sweet notes just lift us higher than you could imagine.

Love
Lisa, Joey, Mason and

AIDEN-- who has his very first loose tooth!

---

Tuesday, January 22, 2008 2:04 PM CST

Not that I am bragging or anything to my northern friends.. but.. THIS WEATHER IS WONDERFUL!!

The weather has been soo pretty. With the exception of one cold day. It is breezy, warm and low humdity. Ahhhhh what a relief. I keep chanting.. "This is why we live here. This is why we live here." Because in the summers I sometimes wonder!

So with the nice weather, the boys have been enjoying lots of picnics and park days. I feel so blessed to have Aiden home with me to spend these days doing whatever with both children.

We had a wonderful time at the park, yesterday! I had to share a few photos. (gee imagine that) while we were at the park, we saw some amazing wildlife. This paticular park is a nature preserve so I take this oppertunity to teach Aiden about nature.

I decided to make a cute little "Nature explorer" booklet for him and his buddy sophie. They had to search for Aligators, Turtles, and Birds. They both had a blast.



Here is Aiden with a TINY baby turtle!!!



Here is Aiden and some friends rolling down the hill.



we saw a snapping turtle.. and...



An ALIGATOR! (actually 4 of them!)

This time of year is so much fun! especially when Aiden feels so good!

Joey and I have been worried about Aiden. We don't talk about it much, because we feel so talked out about the topic. Joey will make a comment here and there.. "he is NOT well..." or "I am worried".. I know what he means. Something is just different about him. He just seems more fragile.. Like more on the verge of always beeing sick. It is so strange, and frankly it is a nightmare. I am just so thankful for the doctors finally jumping in to care for him. I mean I guess it took switching centers (aka playing Donald Trump: "YOU'RE FIRED!")... but still God perfectly placed us with the right doctors now.

I am so excited about Toledo. I mean, not like it is a paticularily exciting city, but Dr. Grubb seems like the perfect doctor for Aiden. We still have NO date for the Addison's testing, Although endocrinlogy has called two times now.. both to "get more info". Ugh.. I am now just hoping we can get it done the week we are already there.

ACTUALLY.. I am hoping that he has some magic fairy dust or wand that makes this nightmare end, and we never have to step foot inside a hospital again. I am ACTUALLY not excited about Toledo and going through with more testing and more hell.. and would be more excited if we just got some "poof" miracle and be done with this.

BUT.. that doesn't really happen. So Inspite of it all, we just adjust and lean on our faith. I rely on my marriage, and family and friends. After that, we are able to say things like... "I am excited about Toledo".. and sort of mean it. Isn't God amazing!?

Not to get "preachy" but I just love how God uses Paul to remind us that even someone SO beloved was not ever healed. Instead, When Paul asked The Lord to take 'his thorn from his side' God said.. NO. Nope. Not gonna do it Paul. But what God did give good ole Paul was the GRACE to sustain. The GRACE to endure. What a GIFT! Paul reminds us in his many letters in the Bible, that in our weakness, sometimes God's strength is more evident!! Now that is FAITH!

So even though when I think of Aiden going across country AGAIN for a final diagnosis, my heart thumps so loudy I can hear it in my ears, I try to just Give it to God. That is all I can do. That and distract myself.

So speaking of distractions.. (how you do you like THAT segway into a new topic?) Joey and I finally built Aiden's amazing Loft bed!!! OK so I really can't claim ANY responsiblity of the building aspect.. but I did sand nd paint till I litterally turned blue! (spray painted with blue paint lol) Joey is amazing.. but a tad bit like Tim the Tool Man Taylor. He has everything almost just perfectly. He made this amazing bed.. (if a hurricane comes we are hiding under it for sure!) but forgot to note one small fact. IT WAS TOO BIG TO GET INTO THE ROOM!!

Now I swear I never once said, "I TOLD YOU SO!!" (ok yes I did!) But at least I didn't take photos of him with this monster loft bed crammed into our hallway. I was SOOO close.. but I can tell when Joey has hit a limit.. I don't think he was laughing any more.

So finally after hours and hours of assembling.. he UNassmbles it, and then put is back to gether in Aiden's room.

THIS LOFT IS AMAZING!!!



Here is Joey, framing it. (my hero!)



Here are the boys waiting for it to be done! (is it done yet? Is it done yet?)



And here is the finished product! (well actually I am not done touching up the paint.. but whatever)



Here is the ladder



ANd this is Aiden SOO happy!

My friend saw this photo and said, "wow look at the blue on his ears" I kept looking at Aiden thinking. there is no blue on his ears... it dawned on me what that blue marks were... His ears are so red and his cheeks so read.. the "red eye" button on my photo shop.. photoshopped his ears! LOL.. So Peg, I see what you are talking about..but it was from the red eye.. err red ear..

OK so.. just a few more ramblings...

(enough already!)

COOKBOOKS TOMORROW!!!! WHOOP WHOOP! They will make great Valentines presents to your MOm or Grandma! (I would say wife, but I doubt my male reader-ship is very high)

I am so excited. Those cookbooks are just exactly what God was talking about when Apostle Paul asked for some healing.. and God said no.. But "my grace will be sufficient in you". Yes it is! I feel like those cookbooks are an awesome way to keep me busy, and help fill Aiden's very depleted account! (ok not SO depleted since we started this project)

I ALLLLLSOOOOOO (also- with drama) have a new excited idea for a fundraiser! I am working on it.. and just can't WAIT to share with you all my new plan!

Anyway, last but not least.. to the person who signed my guestbook, stating that their child had both addison's and dysautonomia, will you please email me? Rolexh@aol.com

PS/ have a fantastic week! Go hug your kids today, and remember to be an organ donor... so many babies are waiting.

Prayer request:

1) Baby Addison, pray for her new liver to come!
2) Baby Severo , Pray for his new liver to come!
3) Jon Lincoln , that he continues to improve

Love, Lisa

---

Thursday, January 17, 2008 2:57 PM CST

5:30 pm Endocrine from cinci JUST called.. they are scheduling him now.. she had a few more questions. I am so nervous. Keep praying!

Read below for the other part to this update:

SO I finally spoke to Dr. Grubb's office. CLICK HERE FOR ARTICLE They have Aiden schedule to see him on Feb 13th at 2:30 in Toledo Ohio. (pray for snow for Aiden!) I asked if they could "squueze him in" (knowing it isn't like Aiden's medical history can be squeezed ANYWHERE) And she sort of laughed and said, "Umm his actualy first available appointment wasn't until DECEMBER!" So no squeezing Aiden in... we will deal with the few week wait.

The endocrinolgy appointment is being made in cinci. I am NOT wanting to travel to Ohio two times. BUT if they can get him in next week, I think we will go. The chances of Aiden having Addisons is still probably 50o 50ysautonomia. (I made that up.. no one told me that)

I don't know what to think, other than I am ready for answers. I was ready yesterday. I was ready 843 days ago.

The good news is, Aiden is doing ok! He is feeling pretty good. He SAYS he feels bad but I can tell he feels better than before. He is pale, but I find the pale is better than the birght red and veiny. Of course what am I talking about?

So anwyay change of subject... I am sick of worrying and talking about sickness!

So... Morris Press cookbooks called.. They have my 454 new cookbooks ready to ship! Of course we have to pay for it first.. so I will probably give them the credit card number tomorrow and they will be shipped ASAP. (arriving next week)

OK I hope I haven't ordered 450 cookbooks in vain, and someone wants at least one more. :-D If You have ordered and sent money (love you AmyH) and you are awaiting.. you will get your cookbooks next week! PLEASE EMAIL ME if you haven't heard from me. I think officially we have had only ONE lost check with no order! I find that pretty amazing considering I sent out 600 cookbooks! (time for a pat on my own back.. of course Tanner's mom isn't so thrilled! LOL)

I am just so thankful that we had a successful fundraiser, because believe you me, we will need it! I am emailing Angel Flight today for a flight to Toledo. Of course the fact I am now terrified of planes (especially small ones) it is gonna be interesting.

SPeaking of interesting.. (warning very gross boy humor ahead)

Yesterday Aiden had some explosive diahrea, I heard him and mason in the bathroom just chatting away. I got up to remove Mason from this private moment, until I heard:

"Mason, shut the door behind you, and sit on the stool."

"OOO-KAY"- mason squeaked

"Mason, do you know what Pee is?"

"Bla bla ga ga ga bla- ruff ruff"

"Well DI-A-RHE-A is pee that comes from your butt. Can you say DI-A-RHE-A? "

"DI re A" Mason said loudly.

"GOOD BOY!!!!!! Now I want to teach you a song." Aiden says in his best teachers voice."It goes like this."

"When you are sliding into first and you feel a juicy squirt... DIARHEA. DIARHEA.

WHen you are running into second and you feel something messy... DIARHEA. DIAHREA.

When you are running into third.. and you see a juicy turd...DIARHEA DIAHREA.

When you are sliding into home.. and you feel a runny foam... DIAHREA DIAHREA"

With that lovely rendition of a tune from the Hawk Family Favorites, Mason bursts out with..

"YAYYYYYYYYY!!!!!!!!" loudly applauding his older brother. Swinging his legs sitting on his bathroom stool.

It may be disgutsting. And it may horrify you all... but to me, I stood outside that bathroom door with the biggest smile on my face. Even though Aiden has to endure all of this, the laughter REALLY and TRUELY is the BEST medicine!"

Love to you all

Update coming
XOXOX
Lisa

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Monday, January 14, 2008 10:23 PM CST

SO this is sort of shocking. ON a Sunday, I recieve a phone call from Dr. Axelrod herself. The head of the Dysautonomia clinic at NYU called me at my house to discuss what she felt about Aiden. I was kind of suprised, but when she told me why she was calling I about fell over.

"I don't think he has dysautonomia"..

HUH?

"I think Aiden is experiencing Addisonian crisis. I think he has Addison's disease."

HUH?

"I think he needs to see an endcrinologist immediatly"

Ummmmmmmm

"I think that his bradycardia episodes (low heartrate) at night is triggering an Addisonian crisis."

OK.

um, sure.

SO this is when the roller coaster ride we have been riding, not only did a major dip, twist and turn, but it basically jumped tracks and got on another ride.

So I panic. How can she knows this? Does she know this cause she KNOWS? I decide to use the sacred "home phone number" Aiden's pediatrician has given me for moments like these, and call. After some time passing I speak to Dr. Cross. We are both semi stunned that only after reading the summary, labs, and notes, that she has decided he doesn't have dysautonomia. We have about 5 specialists who believe this is his diagnosis. BUT BUT she may be right. And.. she may not be.

Sooooooo I feel so frusterated! I emailed Cinci, then called. Then called Cleveland clinic in OH, then I called Dr. Grubb's office in Toledo Oh, then I called my pediatrician, and labs, and so on and so on. Basically we are swtiching gears, getting an Addison's stimulation test done asap, and then work up the dysautonomia in OH if it isn't Addison's disease. ( a disease of the adrenal gland)

A lot of people I haver told have asked many questions, on of which is, "Which is the lesser of two evils?" And I THINK if we can get Aiden on the correct medicine that Addison's is better.

BUT all I can think to myself is.. it has been 2 years 3 1/2 months since this hell has started with him. Since the first time he screamed at the top of his lungs in the bathroom.. "I AM THIRSTY!!!!!" and turned pale white, and passed out on the floor. It has been 840 days since I have KNOWN that something was wrong.

When this all started, I seemed neurotic.. now no one thinks I am neurotic now. He is a sick little boy. And I will be honest, and this is hard to say, but I will just say it.. I think he is getting worse. How can I NOT think he is getting worse? 5 admissions in 9 weeks? It just feels worse to me.

Anyway, so.. we are still praying. We are praying for answers, wisdom and now we are praying for the RIGHT tests to be run. If he has Addison's I am praying it is revealed ASAP.. if it is dysautonomia I pray we get into dysautonomia clinic right away.

who would have thunk? I guess when I said this year, that this year was gonna be the smooth year. The year I had a "good feeling" about... I didn't realize that it would be crazy bumpy first. I feel sort of in a dream.. (uhh it is called a nightmare actually) and I am just wanting it to end. I want to just make him better. I can tell, I am his mom, that he is tired of this. I just can tell.

Anyway, I thought I would share some photos from the hospital trip. Do you remember me sharing about how they screwed up and ordered all the wrong blood tests for Aiden? And the slip for the testing was 5 feet long? Well I took photos.. can you imagine ALL of these labs being run on my child? In one morning? It was actually a totally hilarious moment.

Here is Fatima (the worlds best blood drawer) holding up the labs slips!



And here is Aiden laying in bed with them! HAHA



yes sometimes mistakes happen in hospitals... and sometimes you have to have a good sense of humor to deal with it.

Here is Aiden after him and I decorated his IV pole. we rode those halls over and over showing everyone his new stuffed animals!



He was so proud!



Above is Aiden in the hall way. This is his floor. 3 SW. Sometimes he stays on other floors, but this is where our amazing nurses are. Did I ever say how AWESOME the nurses at ACH were?? I love them!

Aiden was so happy to be unhooked from his IV, but he didn't realize it was because the vein had blown. His little veins are so tired. All the needles are so hard on him. They used to be tough, but now his veins are hard and scarred. They are tender and sensitive to the fluids. No child should have to endure this!



And here is me and my boy. My love, my sweet angel from heaven. I can't tell you how much he has blessed my life. What would I do with out him? He has shown me bravery, and humor. He is truelly my hero.

Aiden, I will never be able to put into words how much I love you. I would take this from you in a second. I would lay my life down for you Aiden. Take all of it away. As Haley says, I would wish it away on a snowflake. All of it, just to have you have everything I had as a child.

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Saturday, January 12, 2008

I am soooooo tired.

I feel like I am on the verge of tears.

It is so hard to see Aiden go through that. I wish you all could understand. Sometimes I feel like people don't realize that my heart breaks everytime. It never gets easier!!!!! I am so jealous sometimes of others. It doesn't seem fair. I just don't get why this has to keep happening!

I wonder how it is possible the world keeps spinning when our world comes to a hault. Just because we laugh and smile.. doesn't make us made of armor. We are human. I never want to have to hold my son down for another IV.. but you know what? I know it will happen again.

I hate chronic.. I hate what the word chronic means. Sometimes I feel like we are just waiting for the next admission.




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Aiden is going home!!!!!

He is mad, he wants to stay. He never got to play video games. The child life people NEVER came. NOT in the entire time we have been here. His name was on "the list" and we must have asked 15 times. The only reason he likes to be here.. is video games. So.. when they said we get to leave today... he is mad. And he cried. He felt like it was not fair. He did HIS part, why no video games.

I on the other hand, do not feel the same way. I am ready to get OUT OF HERE!

Thanks for the prayers.. pray that this was enough fluids to calm down the dysautonomia. he didn't get fluids almost all day yesterday because of his IV problems. I don't want him to come back in a few days. I am very nervous about that.

Next plan is NYU. Keep praying!!!

HUGS
Lisa

"Jesus replied, "What is impossible with men...is possible with God."
Luke 18:27

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Friday, January 11, 2008 7:12 AM CST

2:00pm update

Poor Aiden.. after being taken to the Go awful treatment room, held down by four people, to try to find ANY vein that could work, he finally got another IV. Poor baby screamed so loud you could hear him down the hall.

I was sitting in his bed comforting him, and then the darn IV pump started beeping.. "occluded patient side"... I think we are losing this vein too.

If that is the case I already told them to have my pediatrician call me, because we will be done. No more IV pokes. I will get more gatoriade in him than any bag of fluid.. I am not making him go through this again. So we will see if medical/chronic mom gets her way.

Just pray that the IV works and we are done with this nightmare.

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So a streak of depression is cured by watching his little montage above. I sat last night (LATE last night) and hit play on his montage. I couldn't help the tears but as Haley used to say... It is cathartic. I watched that montage above, and saw him at every age and every stage with an IV, in hospitals, getting testing. Wow he is brave. He is so amazing. I feel like he has so much fight, and some other special ingrediants in his make up. He is just different, kind of older in his sassiness, and a tad bit more lopsided in his humor. I think it is all these years dealing with this kind of pain, and this kind of stuff. Don't get me wrong Aiden is no angel. He isn't a super hero, but he is special to me. I am proud of him for how brave he is. Yesterday morning when he was vommitting he doesn't cry. He just vommits in his bucket, wipes his own brow. I tell him he doesn't have to be so brave, and he tells me it doesn't bother him. I just love this kid so much. When he was getting his IV he ws being so brave, but when they cleaned the area with alcohol they wiped it all oover his red and raw red exczema. He screamed and screamed. I just felt like crying I could imagine how painful that was. When the nurse left, she didn't say sorry for hurting him, I am sure it didn't cross her mind, but he told her.. "Umm excuse me, I am not mad at you any more, but don't ever do that again." He is learning to advocate for himself, I love that. Not a lesson I dreamed of when I was pregnant for with him, but I am glad that in these circumstances, he isn't afraid to push the call button, ask the nurse to come help him. OK so no I don't get to see my child in some cute school play standing brave singing cute songs, but instead, I get to see him do these things. Proud moments for regular moms are just a tad different than the proud moments for HOSPITAL MOMS.

Aiden won Bingo last night. I know you all are shocked. It seems to be just such luck! It has NOTHING to do with the fact that is overly competitve mom sits with the phone in her hand, with the Bingo number half dialed ready to go! of course every kid gets a prize, but since he won he got to get a puppy puppet and a little game of jacks. Gee that is fun chasing a bouncy ball all over the hospital room. (not)

Anyway, he is doing ok. He is still red faced and veiny. I know those aren't the techinical names, but after two years and three months of calling it that... it is hard to teach this old dog some new tricks. I guess I could say he is vasodialting, but Cheryl (who is an ICU nurse and her husband a doctor,) says that would raise some eyebrows if I walked around saying that to all the medical staff. I agree, after a while, you learn all the medical terminolgy and you start to feel like they look at you in a diffferent light. You know.. kind of like a KNOW IT ALL. SO sometimes I just fake I am stupid-er than I am. If it is a new ER doctor, I will say things like, "Ummm They said something like Vasodia... something like that??" It helps. Take my word for it. Years ago before I learned about the Ego of certian medical people.. I remember a new nurse walking in, I was writing his intake and outake information on the dry erase board. I said to her, that we needed to "D/C the cellcept per our transplant team" and she just stopped dead in her tracks, and said, "OHHHHH you are one of THOSE moms." and turned around and walked away.

Yes.. I AM one of those moms. One that comminicates with her doctors, one who understands what is happening to my child. Listen.. if they can learn medicine, it isn't like they were born with some magic skill.. I CAN LEARN it. I like to joke (sort of) that my 7 years as a vet tech has taught me more about medicine than anything. Poop, pee, and blood draws. Not much different. (but don't tell Aiden that)

Anyway, so here we sit. It is 10:40 he hasn't had his AM lab draw yet because when Fatima came in (yay Fatima!) she unrolled the lab order slip and I am NOT kidding you it was FIVE FEET LONG! I even took a photo of her holding it next to her.. and then with Aiden on his bed and it next to him! HAHAHA That was hilarious. So needless to say. 20 tubes of blood is not leaving my child this morning. Although it may help with his high red counts. So we are waiting for some information. They want to run C 1-9 compliments on him. As well as serum amino acids, organic acids, Cmp panel, and CBC. (oh there I go showing off that magic medical terminology.)

Ok let me jump back on that rant. So we were in the ER yesterday for 8 hours waiting for his room.. and I was faking I was stupid for the benefit of the new ER doc's ego. She looked at me and said, "WOW mom, you are doing good. You have learned a lot!" That just made me want to say.. ARE YOU KIDDING ME? this is my child! Of course i have learned a lot. I live with the kid. Do they really think that we as chronic moms aren't gonna figure it out? How to say certian words? I mean c'mon don't insult MY EGO.. LOL.. No matter how many fancy words, no one knows a child like a mother.

(and I wonder why Aiden is sassy)

SO with all that said, I am sitting here coffeed up, thanks to my friend Kelly.. who now WORKS at ALl Childrens! WHOOP WHOOP Go hannah's mom! I am feeling better after talking to my friends on the phone, getting either the boredom off of me, or the pent up feelings. So I just want to take this tiny moment to do something that I never do. I just want to say thank you. Thank you to 3 very special ladies in my life.. you three are the most awesome friends. Not only do I love you guys, but I love your kids. I can't thank you enough for riding on this crazy journey with us. You put up with me out to dinner and there I go ruining it all talking about the statistics of certian neurotoxic medications....and I just want to publically thank you all. XOXOXOX



~~~~~~~~~~~~~~~~~~~~~~

well now it is 11:05 Aiden's IV just blew. His right arm looks bigger than the left. He has cried his heart out and is now negotiating a new train. I hate that he has to endure this. Now a new IV is coming.. and then 5 feet of labs.

Pray for him and his doctors, nurses, phlebotomists, and NYU to have wisdom, good poking ability, and kindness toward a little boy that has been through enough,

GOd Bless
Lisa

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Thursday, January 10, 2008 7:02 AM CST

2:30 pm

boring. This is very boring. We have a room waiting for us on 3 sw. It isn't ready though so we are freezing in the ER. I say freezing because they must have the air set on 60 degress. Or even less. Meanwhile, Aiden has mannages to be sassy to everyone who has entered the room, but the nurses love it, so they tickle him, and tease him.. Why is it that all my parenting efforts get shot down the drain in only moments? Aiden has declared emphatically that he will NOT wash his hands this time in the hospital. He has also managaed to say the words "BLAH BLAH BLAH BLAH BLAH" through an entire 30 minute conversation between myself and his pediatrician.

Ahhhhh to have a 5 year old teenager. It is just what every mom hoped for. IN the mean time, his labs were pretty crummy although the WBC was nothing compared to the whopping 30,000 it was last time. It is elevated but not too bad. That only says to me that the 120 ounces of fludis I poured into my child was not toally in vain. At least he seems a little ahead of the game.

Lastly I would like to commend the makers of Zofran. Not only did this drug save me through two pregnancies, but To be able to pop that under my sick child's tounge while he is listless and out of it... then to have him 'feeling better' soon is just a miracle. ONce they put his zofran in his IV it is like a new child.

Dr. Cross has faxed all our final summaries to Dr. Axelrod at NYU. they are making the appointment soon. I guess we should call and cancel his cardiology appt tomorrow morning. Maybe he can some see us inpatient.

Anyway, that is it for now from Spa ala All Kids. I will update more on my Lion's antics soon.

XOXOXO

``~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

10:00am
UPDATE: Aiden is getting admitted. I will update soon. (it is crazy I wrote the precious update this morning... and as I was typing I could see him deteroirate. The beginnning on the update below I was talkng about Christmas then I could tell He wasn't feeling good.. then he was starting to lay on the ground moaning.... it went down hill from there.

Right now we wait in the ER... he needs rest, so no visitors today, I will let you know when he is ready for some company. GOD BLESS YOU and pray for him!!!!!!!!!!!!!!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

previous update:


Well I can't believe I haven't even posted Christmas photos! Geesh What kind of mom am I? So I thought I would show you all a few from Christmas morning that I thought were especially cute.

Aiden had asked Santa for a new train...actually a new obsession. A Lionel train. So of course Santa was shopping on Black friday with her..umm his... coupons and ran across a good deal on a Lionel little steam engine. Lets just say we never let on that Santa would ever be able to pull that out of his bag. It was sooo cute to catch him on video fake fainting when he finally saw that enormous box.





Here it is! CHOOO CHOOOOOOO



And here is Aiden and mason (still being a "puppy") watching it go round and round.


Mason on the otherhand.. well he just loves elmo and Lambs. I don't know what and how the fascination with lambs began but he is totally obsessed. So, next to the big ole train box, sat this little lamb and his tiny baby bottle. It was a HUGE hit!



Rolex was blessed with a spongebob sweater.



"DOes this make me look fat?"

We had a wonderful Christmas. After the holiday we went to Joey's family and we got a few family shots.



Here we are with Joey's Grandma.. but we call her Mama Ditty. This is the boy's only great grandparent and boy she is SPECIAL. I love to hear her stories! Just the other day she was telling us how when she was younger, she was on a traveling women's basketball team. Aiden thinks that is SO cool!


Here is the annual photo of Joey and his brothers and his father and the boys. Basically three generations of Hawk boys.



As usual mason looks less than thrilled.

Overall we had a great Christmas and new years.

But now things are back to normal... Therapy is kicking my behind. I am not used to getting up, dressing two kids, feeding them, out the door by 8:15. I know I am spoiled... this is something most moms do every single day.. but Still it is something to get used to!

I haven'[t given a Mason update in a while. He is doing amazing! I took him to the park the other day and he ran for his first time. Not the silly off balanced little jig he does, but a real run. baby run. It was awesome! He lifted both feet evenly, I was soo proud. We showed his Physical therapist yesterday and she was also really happy. We are working mainly on running, teaching him how to jump, and stepping up and down with his weak leg. I learned that it is hard for him to step UP with his right but because his right leg is the weak leg, it is actually hard for him to step DOWN with his LEFT. That is because while stepping down with the left all weight is on the right leg. Mason's speech has done leaps and bounds. He is re evaluated IN the month of Febuary. I keep thinking.. wow he is great! But I won't get overly crazy with my predictions on his speech, and just wait till the professional tells me her opinion. LOL I keep thinking.. just discharge him! He is ready! Mason is still playing puppy. He ruffs and ruffs everywhere. I think it is awesome for his imagination. He is a wonderful little boy. We did his weight check and his heigth check since he was falling very low on the charts, and either his last heigth measurement was incorrect, or he has grown. Either way He is 15n heigth which thrilled me to no end! His weight is still 3We do pediasure once a day with him, and we also add oil to his sippy cup for added fats. He is sooo cute and little and I just love how I God let him be little like his brother! Even though I am 5'10 an Joey 6'1" . So mason's update is basically that he is thriving, and doing wonderful!!

Aiden on the other hand is just one day off an admission. he is just very dehydrated or something. His potassium came back low after his last blood draw.. it is shocking how much he drinks and how he can still need more and more. He is on a high sodium diet and high potassium. For some reason his kidneys just don't absorb these electrolytes. His pediatrician had a name for it, but I forgot it. Basically it is just strange. His RBC were high, as well as his hemoglobin and hematocrit. he has been complaining of headaches, and every morning I see him wake up and I think.. Oh God please don;'t let today be the day he needs to be admitted.

There are days where I really think.. yes a port is what he needs. It is time. But then days and days where I think.. no he will be ok with out it.

It is hard.

No other way of describing it. Today he has his famous diahrea.. I am so scared he is doing his "thing" again. Please pray for him.

Anyway, that is our update... I will be updating again about how he is feeling soon. God bless

Lisa

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Thursday, January 3, 2008 2:35 PM CST

Gosh it seems like I haven't updated in a YEAR or something!
teee hee hee

OK so I am thrilled that today the very first update of 2008 is going to be this good.

I just received a phone call from Aiden's new immunolgist in Cincinnati. This was about 30 minutes after a very uplifting and hopeful conversation with my transplant coordinator in Cincinnati! (coincidence?) Anyway.. she called to tell me that she wanted to discuss Aiden's allergy and immunology results.... drum roll... are you ready????

Aiden's egg allergy has dropped down to a 0.6 Basically negative. His pork allergy was also 3.4.

Ummm this is like a 40 point drop. This is out of 100.

She feels that over next next year we need to get at least one more negative on the RAST, then when we go to Cincinnati for his annual next fall, if he is still negative on the blood test we will be doing his first skin test. (I will need a valium or two) Then if that is negative, we will do an offical food challange. (in the dr.'s office with an IV and with epi handy.) That means there is a potentional that in less than one year Aiden will be eating eggs and pork. (this is a good time to go to Tanner's page to read in his journal history about his egg challenge. )

I am just in shock. I am so excited. I feel like we are winning the lottery lately! SO much good news!!!!! I feel undeserving.... (then I whomp my self with old Aunt Esther's purse and remember).. NO HE DOES DESERVE THIS!! AIDEN DOES DESERVE To have the same regular life other kids have. The same I had. Let the kid have some mayo! Heck and a flu shot.

Not only did she say that but the immunology stuff with the auto antibodies were NEGATIVE. Whoo hooo. They feel the drop in the prograf has made this difference. I am thinking.. holy cow.. the kid may be able to grow out of all of this one day with the right med changes.

We are drawing labs in the morning, if I can get mason feeling better. He has caught a tummy virus. He is sleeping now, but has thrown up 3x today. The last one well... I won't show you pictures or anything.. but it was gross!

IN other amazing news... I also spoke to my super fabulous transplant coordinator. I LOVE her. She was so cute and bubbly. They went on and on about how fabulous my local pediatrcian is... I have to agree! We discussed the Holter monitor, which came back NORMAL. No weird beeps or blips or skips. (Aiden did ask, if there was a tiny picture of Jesus in his heart.. I thought that was precious and hilarious.) Anyway, he does have bradycardia though, and it is probably due to some form of dysautomia.

The more I learn about dysautomia, the more calm I am about it. It seems pretty freaky, especially since the type Aiden has is systemic, and effects 4 different body systems that we know of. BUT there is a chance that putting him on a betablocker will help calm his nervous system and then treat this disorder. BUT... they want us to be admitted in NYU.

So we will go up there soon. My pedi will probably handle the appointment, or I will once I know who to call. In the mean time we keep him very very hydrated... and he now has this cool camel pack thing, (holds fluid in it with a big straw) that he wears at the house, drinks all day.. that thing is awesome.

I know I say this every first of the year.. but I just feel so differently this year....

THIS YEAR... is going to be a great year. THIS YEAR... will be the year they FIX my little boy. I JUST KNOW IT!!!!!!!!!

I am just so full of hope. So full of thanks!!

Sooooo.....

I am thrilled to say that this, my friends, is the end of the first update ever of 2008... what do you think about that? Not too shabby!!!

Love and HOPE
The Hawk Family!

PS/ PLEASE email me if you have not received your cookbook, yet you have sent money. I think we are all caught up, and sent all of them out. The second shipment of cookbooks arrives in 2 weeks! SO keep those orders coming! I hope everyone got them for the holidays, I made a big effort to make sure they were sent priority to be there fast... but the holidays were hard.

My email is RolexH@aol.com email me and let me know if you have any problems or any questions!

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