History

Monday, April 23, 2012 7:56 AM CDT

The Birthday extravaganza:

Some great, some not-so-great times.

Aiden is now 10!

I can't believe he is a decade old. Double digitis. He is becoming mature and tween-ish at the same time. I am loving this age! Still get the snuggly kid, but also the one that wants to talk my head off about life and friends and pokemon. :)

His birthday party went off with out a hitch. 7 boys sleeping over. It was LOUD, but so fun. They kids all have wonderful manners and lets just say, NO DRAMA. The boy sleep over is nothing similiar to the drama filled sleepovers of my youth. Let me tell you, many times I was saying to Joey how happy I was to have had boys.

Dirt and loud, but no drama. Ahhhhh. I feel like our life has enough drama, why create it?

The party was a blast, it consisted of my amazing husband organzing the wildest game of 'man hunt'/'capture the flag'/ in the dark- game ever! (could you keep up with that description??) Boys, yelling, running, chasing. And it was free.

Aiden said he "felt like royalty" because everyone gave him so much attention.

Opening gifts. Totally cute. Even this is blurry because they can't sit still.

While the party was a success, and he didn't get sick, (thank you mega dose of rescue steriods), his actual Birthday was another whole story.

Here was the scene:

OK not nearly as fun.

It really stunk. The night before his birthday he began to hav difficulty swallowing then vomitting. This has been a chronic issue he has had his whole life due to Eosinophillic esophogitis. But it has been effectly treated in the past with steriods. Since we had to stop the steriods because of numerous reasons (lack of bone growth and hormone changes) we believe his eos is back. We won't know for sure until we scope.

So, the day before, and the day of his birthday weren't nearly as glorious. It seems like such a kick in the rear that my sweet boy wakes up and has to be taken to the ER, held down for two seperate pokes into his port (because it wouldn't flush), get a swallow study done, and run IV's.

There were a lot of tears. Lots.

I tried to be silly and funny. I tried to 'look on the brightside'. We already had the party, at least they didn't admit him, etc etc. But now that Aiden is 10. I have so much less influence on how he percieves situations. When he was 2 he didn't really know the alternative. But now, he does.

THIS is why we have trained and trained him to have a more appropriate view of life and the world. Be thankful in all things, it is all a gift. As he gets older he will fall back on that, but also naturally feel pain and hurt. It is all ok. But that is why he has a crazy momma to cheer him up.

Me acting silly in my lead apron at Xray.

And while Mommy is good, nothing beats the way it feels to grasp his Panda for comfort.

Aiden got to go home that afternoon. We managed to salvage the night with some quiet cuddle time. He began to have difficulty swallowing (which is followed by vomitting for an hour) again on Saturday. What a shame. It needs to be addressed soon.

So the ups and down's of Aiden's 10th birthday are forever recorded in his journal. But I can't close with out mentioning the way it feels to look at him at this age.

Sometimes I think I am in a dream. So much time has passed, but it feels like yesterday we was an infant and we were fighting to make it to that first birthday. I wish so badly I could go back in time and say, "fear not! He will be 10 years old in the blink of an eye."

If it wasn't for his donor, an angel in Heaven, he would not be here. I wouldn't have him to laugh with in X-ray, I wouldn't be able to hold him when he is sick. I certainly wouldn't be able to BURST at the seams when I see him have success and health and meet milestones.

So no matter if it is a birthday with ups and downs, with highs and lows... It was a birthday. One that would have never had happened with out the gift of organ donation.

Thank you donor angel, thank you donor families all over. The gift of life you have given us, has made me feel complete.

Happy 10 year Aiden. We love you.

Saturday, April 14, 2012 7:42 AM CDT

The Ddavp pill didn't work, it water intoxicated Aiden, causing his sodium to go down. It wasnt working, he felt like garbage during the trial and we just decided to stop.

He is doing great. It isn't perfect, but It is so great. He has rarely taken his zofran, usually if he gets too hot that causes most of his issues, but honestly it is nearly impossible for me to post or update with anything negative. It is just OUTSTANDING how different he is. No hospitals for 8 months. His longest in his life. He feels secure and happy and confident that this is finally starting to change. The trauma he has endurred has taken some toll, and that is to be expected, but to see him working it all out in a healthy way has been INSPIRING.

Often on the way home from school he will say something as we pass the hospital. "Sure am glad I am not there." "why is my life so different?" "am I really going to get all better?" I have been honored to have him come to me with such hard questions, and I have been ready for them. He is the most skepticle about this time of health, and I encourage him that it is OK to feel that way. In his whole life he has ONLY know crisis and trauma that comes out of no-where. It can change every moment.. happy and fine and then BAM sick. This is new and we are trying to love all over him as he figures out how to trust this new way of life.

This week he will be turning 10. I don't even know how to grasp that. 10 years old? He is such a miracle. I have adored being his mother. When he was a little boy he was fiesty and funny and inquisitive. He was always on the move. It seemed he never walked anywhere.. everything was at a full gallop. We could always hear his happy yells from the sandbox, and often I would have to say to him as he played outside.. "Ok, the 'outside voice' is too loud". I loved his enthusasim!

As he got a little older, he suffered so much. A sweeter nature came out and has stayed all along. I don't think I remember any of the last 6 years with out it being associated with a hospital, or a terrible event. His courage and strength blossomed at these ages. But most of all his thirst for being 'normal' began. Everything was about school, about doing what others did. He was hungry to just be a kid, and it honestly has kept my marriage intact, and my sanity intact. He has taught us so much about not accepting what is laid infront of you. To always strive to achieve more.

As a young man approaching 10 years old, he isn't that loud outgoing little boy. He is quiet, thoughtful, and sometimes shy. His compassion and kindness are the forefront of how I would describe him. He loves school, but now in a healthy way. Some grumbles here and there remind me that he is now more typical and that makes me smile. I know he has so many thoughts that just seem beyond his years. I am very thankful the Lord has trusted me with this child's care. He has changed my life forever.

So because of this special occasion, Aiden is going to enjoy reading my letter to him. He has been reading certian updates on caringbridge, approving information for years now, so this is my letter to him:

Sweet Aiden,

It has been my honor to be your mother. There isn't a place I wouldn't go for you, or a night of sleep that ever was missed that wasn't worth it. You have never made me feel sad. Even when we all were scared, it was only the greatest joy of my life that *I* got to be the one sitting by your bed with you.

I could sleep anywhere for you, as long as we all are together.

Your spunk and energy makes me laugh and keeps me going. I love how you scooter on your IV pole, and how for years when it was just us two alone in the hospital, how we would sneak around and explore like we had never been on that adventure before.

You are handsome and special to me. You are so smart in such a special way, I can't wait to see what you do with the long life God has laid out for you.

You are becoming a precious young man, who thinks of others and always trying to give back to those who are in need. Don't ever lose that quality, it is a gift that you have.

Happy birthday to you. This year will be amazing. Soon you will be port free and that will be the end of home IV's and icky bad days. You will soar and I just can't wait to watch it. Mommy is so proud and I couldn't have asked for a more precious first born child. You have made our family special and unique. We love you so much.

Happy birthday my bubba.

Momma, Dadda, and brother.

Sunday, February 26, 2012 8:02 AM CST

Our little Lion is under the weather today, woke up sick with vomiting in the middle of the night. His face (and third spaces) are very puffy (with fluid) and he just looks puny. He says he is very dizzy. Hopefully with no fever and with him continuing to drink fluids he can do this at home and avoid admission. With the new meds I do feel more and more comfortable with him not losing too much fluid or going into a crisis. I am so thankful for that.

Over all I wish you could see him. He is doing amazing. I mean there are days he doesn't seem sick or look sick or act sick. The headaches are so much more infrequent and his energy is still up. It really is a miracle.

When people ask me, "how is he?" I honestly don't have that usual fake 1/2 reply. Now I am saying whole heartedly, "he is great!"

Thank you God.

We did finally get his next series of growth hormones approved with our medical insurance change and his endocrinologist went up on the dose. The largest increase since he began GH shots. I hope we see it make a big difference.

We stil have yet to get the DDAVP pill approved by insurance because they don't want to cover two forms of it. (pill and nasal spray). So I have no updates on that. God forbid our doctors actually order a medication that may HELP our child and insurance doesn't think it is necessary. Nice. And what medical degree to you hold at the claims office? Oh none? OK then let my child's doctor do their job.

SO frustrating.

Meanwhile his doctor has to call or plead the case herself, as if her schedule wasn't already booked with saving lives, now she has to convince some random non medical person that she indeed knows what she is talking about.

Anyhooo...

Mason and Aiden got their hands x rayed to check for their growth (or lack of). Mason's x ray showed he was at 5 years and 0 months of age which is 1 year 5 months behind. If you plot Mason on the 5 year old chart he is somewhere around 25On his current growth chart (mason is actually 6 yrs 5 months) he is falling off the 0

So that is good news. "What?" You say. "Good news?". Yes.

This whole X ray and growth thing is ultra confusing. It means he has growth left on his growth plate. (this is different than Aiden. Aiden's growth plates were closing so hence the Growth hormone shots).

Mason has an endocrine appointment on march 8th at 8:00 AM. She wants to make sure there isn't a genetic component to why he isn't growing. We all know Mason has some metabolic markers that are abnormal. Some genetic markers also that indicated a syndrome. (Precious-cute syndrome) It is probably fine, but it is just a good idea to keep an eye on. We are hoping she doesn't notice we haven't done his MRI to check the cysts on his brain, in 2 years. Wincing. (under another doctors advice we are still holding out on putting him under general anesthesia to look at the lesions on his brain, since his symtoms are not only unchanged, but he is doing great with development.) I will update about May May when we know.. hopefully status quo.

Aiden's X ray hasn't been read yet because it was a different specialist who ordered it. I got the call about mason's results in 2 hours direct from his pediatrician herself, and never heard about Aiden's results. I will have to hunt down and offer a ransom for it.

In fun news.. flag football has ended, and baseball has begun. Aiden chose to not play baseball this season, so it is just Mason. Joey is coaching his team and we are super excited about this new season. Go Rays! Aiden is hoping to go back to tennis lessons and we are getting ready to sign him up. What an exciting time for both of them!

So that is it for now. We appreciate your prayers for Aiden as his struggling today with this sickness, and just thank you so much for continuing to care and pray for our boy.

With love, The Hawk Family

ps/ I updated my little 'blog' about the furniture I repurpose: www.spottedhen.blogspot.com check it out if you haven't seen it yet. :)

Tuesday, February 14, 2012 6:21 AM CST

It was a warm late summer day, and we were heading to Ohio to try to find something to help our son from the downward spiral he was in. He couldn't walk more than 5 steps without exhaustion. He couldn't sweat so he would dangerously increase his body tempature and need to be constantly cooled. Things were bad and we couldn't stop the crisises, we couldn't keep him hydrated. His blood pressure was all over the place and his heart rate was effected. His eosinophillic disease was destroying his whole GI tract and they had to blast his immune system with steriods to help with the constant pain and disease it caused.

It was just bad.

We had been so excited to take a little "vacation" on the way to the hospital and let Aiden and Mason ride the famous smokey mountail railway. Aiden's love for trains is what kept Aiden going and it was just an honest dream come true.

When we parked the van and noticed how much walking needed to be done, we thought it wouldn't be too difficult. After only a few steps, Aiden was out of breath and getting sick. Joey knew Aiden wouldn't be able to handle the heat, the walk, or even honestly just sitting and waiting for the train.

With out words, Joey swooped down and picked up both the boys and walked just under a mile with them in his arms.

I remember tearing up, walking far behind him thinking of how Joey was litteraly carrying the pain of our family, on his shoulders. I marvelled at how he didn't grimace, didn't moan, but instead he just talked to the boys about how excited he was for the upcoming ride. I remember being in awe of this. Just shocked at how he just leaned down, took one big breath in and heaved them up in his arms. I could almost FEEL the burning in my shoulders as he just kept walking. I remember calling after him, "let me help carry mason".. He wouldn't. He was fine.

As we finally made the train station Joey gently laid Aiden down on a bench with his head in his lap rubbing his belly and talking to him about all we would be seeing.

Mason cuddled up with me and I just remember taking a mental note in my head. I was telling myself, that if I ever ever doubted WHY I was in love with this man, I was to remember this moment. It was such a metaphor for his place in this family. Swooping in, with no moaning, no complaints, carrying the family on his shoulders. The burdens, so we can have the joy of the ride.

I know they say that 75 to 80 percent of marriages end in divorce that have a medically fragile child. I know they say these things and honestly it used to scare me. But I cling to the truth. My valentine isn't just some hottie. (which he IS)... he isn't just a smooth talker (which he isn't)... this is the love of my life, the sweetest and more giving person I know and I adore him.

I don't adore how he leaves his keys and wallet hidden under papers for me to search for, or the shoes in the middle of the floor and yes even the cliche of the toilette paper roll that seems IMPOSSIBLE to refill. I don't love that, but I am NO dumby. That could never cast a shadow on the things he does for us.

He has never called me a name. Ever. He has never said honestly, ever... ONE mean thing to me. Ever. And I love him.

I know this is Aiden's caringbridge.. but it is the story of us. The story of how we cope with unfathomable odds and I just wanted to share on this Valentine's with anyone who cares to read.

Happy Valentine's Day Joey... I will never forget the Valentines of 1999 when I KNEW you and I would be married and live the rest of our lives together. I never expected this to be what we would have, but I am soooo glad that I have seen the gems that have made it out of the fire.

XOXO
Lisa

Thursday, February 2, 2012 6:53 PM CST

OK I got a great update!

Aiden had his endocrine appointment today. We go every 6 months for a growth check to see if the growth hormone is working, if he is growing. We also were discussing the central DI and the adrenal insufficiency. It is a big appointment. So lets start with the easy stuff first.

1) growth. He has *only* grown 4 cm in 6 months. No growth officially since November.

wait, did I say that funny?

Ok lets try that again. Aiden grew 4 centimeters!!! We are sooo excited!! whoo hoo!! He is growing! Those shots are doing something his body couldn't do! yahooo!!

SO as I have mentioned here before Aiden is just so happy he is growing even just a tad. Poor guy didn't grow at all for many years and went from being just 'small' to completely falling WAY BELOW the 0 on the growth chart. The thing is, he is supposed to have "catch up growth". that means grow at a faster rate than his peers so he can catch up to them. He isn't actually growing even at the rate of the other kids, so the docs are probably going to increase it again. She did say, it works only as good as it works. Since aiden has technically fallen into a catagory of "ideopathic short stature" (aka they aren't sure why he isn't growning normally)... we don't know exactly how well an increase will help.

So as always they are wanting a little more, and Aiden is jumping for joy with any growth. So I jump with him. Yippeeee!!!!

Meanwhile say a prayer they are fighting our new perscription insurance to cover the next round of shots. We do know he will have a time where he will not be covered and won't be getting them. :( pray that it is a short time for his sake.

more to come on the growth aspect, in future updates...

2) Adrenal insufficency. So as well all know, Aiden has adrenal insufficiency. Just like the growth it started out because of a life time of use of prednisone. And not wimpy doses like 5 or 10 mgs (I say this tounge in cheek).. but 40mgs, 150 mgs, 80mgs.. etc etc.. for years. never one day off of them. When anyone take steriods your adrenal gland shuts down, because it doesn't need to really work. You are giving the body cortisol through the steriods, so it thinks it's job is done. But a child whose ENTIRE LIFE was on prednisone may take a long time for his adrenal gland to wake up. But they aren't sure THIS long.

It's been a year since the last level was drawn undetectable. That means he still has NO adrenal function even with being off prednisone for a loooong time, and being only on minimal doses of hydrocortisone. So, today we discussed that it is probably related to his 'form of dysauontomia'. Sigh.

She is ording another cortisol level for 3 weeks from now, as well as a few other hormones to see if his body is making them normally. Previously they have never been normal, but we are praying they are at least trending in a better direction.

the next part is one reason why the appointment went good in my eyes: She gave me a more clear plan on how to help Aiden during his difficult days. What dose, what medicine to give. bump the hydrocortisone here and there to help him get over any possible crisis his body may swing into. It is very helpful to me as a mom to get communication and a plan. I love a plan.

so adrenal info was just typical, we did get a better plan for bad days, and more labs to be drawn...

3) the best part of the appointment! (probably the only part you want to read about the other stuff was a tad dry)

Aiden's Central DI.(diabetes insipidus) aka the magic medicine. aka.. nasal spray.. aka why he has gone the longest of his entire life outside a hospital.

OK this was good. So we see her in the hallway, she said, "you guys have been very quiet, does this mean things are going well?" I gush. I spill it all.

no hospitals.
no crises
way more energy
life is good
bla bla bla

She just beamed. I loved her reaction and how she kept leaning in to hug him as I told her how well he has done since the medicine was added. Only 1 crisis since he started the Vasopressin. He hasn't been admitted since AUGUST PEOPLE! (what irony that the ER doctor from Hell was his last admission)

My deal is this. It is good. But not perfect. Not even close. The medicine works some days, and somedays it doesnt at all. She explained that it was very normal for this med to just not absorb properly. I explained that even though he has not had a full blown crisis he has had weeks at a time with uncontrollable nausia and blood pressure issues. I told her how happy we were with the drug but just wished we coudl tweak it. We discussed how we tried the nasal spray in the morning for daytime use, but how it made him not want fluid and his blood pressure would bottom out. It is so hard to treat him effectivly.

She said, "You may not want to experiment with this, but if you want we can try doing something new." YES YES!! This is why I came! I was sooo hoping she would have something even more to offer. We are happy now, but man if we can even do more, it is sooo exciting.

SOoooo... the Pill form of this medicine which DIDN'T work on him at all in the past, (and the culprit why he was so hard to diagnose and treat)... she wants to try it in the morning. She said, if it doesn't work or absorb at all, then no harm. but even if we can get a miniscule dose out of it, it might make all the difference. It won't make him hate fluid (he litterally is disgusted at the sight of water on the nasal spray) because it is such a small dose.

So she said, "I wouldn't trust everyone, but I trust you." (pause there.. I loved that. thank you so much for that compliment!)

"I wouldn't trust everyone, but I trust you to just try it out. Give a pill, give two pills, give a half tweak it how you want. email me and be in contact, but I trust you will know when is enough, or if it works at all."

YAYYYYY So I loved it. She was beaming she was hugging him, and honestly I am just thrilled to pieces that she had yet ANOTHER idea. I thanked her for really doing her job in an excellent way. I thanked her for thinking of Aiden over a weekend, when she spent time with her family, when she could have just brushed it off. She looked at me and smiled and then thanked me for noticing.

I asked her, "How often do you see a child who is honestly just so disabled from thier illness to really improve like this?"

her reply, "with my adrenal insufficient kids, with the ones with severe thyroid.. I can see them change like this." She then said, "there is no doubt in my mind aiden has some very rare dysautonomia, this central DI, isn't just central DI. His adrenal insuff. isn't just steriods, nothing on him adds up." She leaned in and just patted his little leg, and I knew that she really 'got it'. Aiden has beaten so many odds, and we are just blessed he is here doing so good.

I loved todays appointment because we upped the odds that things can even get better, that we are better understanding this dysautonomia, we have a plan for his adrenal issues, we made a plan for his growth.

It was a good appointment. So much better than the days when we just heard his prognosis was not good. LOOK how it can change people! See, there is never a time in life where you should lose all hope. ever. Believing may not make it come true.. but it darn sure made the ride much easier.

I'll update and let you know how the meds work! Starting it in 2 days.

Lisa
Team Mom.

I remember this photo, this time, these days. It was hell. I never stopped believing, and I am so glad I didn't. Thank you God, for the fire you let us walk through because this sweet victory feels even so much better. So happy for my boy.

Wednesday, January 25, 2012 11:22 AM CST

It is wednesday, and we are IV free! Took Aiden to ACH and they deaccessed his port. He feels really good today. Just a little runny nose and now 48 hours since fever. He is super super thirsty, but that is his only symptom he has right now. Pretty easy to treat with endless gatoraide. :)

He has a lot of work to continue to catch up for school. It is hard when he feels so terrible. But he wants to get it done. He is so eager to get good grades, and just to succeed. It really impresses me because I ask myself, 'Would I be like that when I was only 9?' I know the answer would have been no.

Mason still has a little cough, but doing much better. I spoke to his pediatrician and we still feel that we are not going to do another MRI on his brain unless we have a reason. The MRI is to follow and measure the two lesion on his cerebellum. She feels that unless he deteriorates we can not 'put him through it'. His growth is still an issue. He did drop from the 15th percentile in weight back to below the 5th percentile. His doctor ordered a hand Xray to make sure his growth is still delayed and not stunted. I'll let you know what that says when we do it and get the results.

We are just so happy we did it.. we managed to keep that 2012 no hospital streak alive. It feels great to stay out, even if he bumps a long the way.

In other news, since it has been so so long since I did regular updates, I thought I would do a little update now.

Baseball season is coming up, and Aiden has made it very clear that he wants to take a break from baseball. The kids are so big. So strong, and honestly he just felt like he was always letting the team down. No one ever ever made him feel that way, but it is what he said every time he left a game last season. So it was time to take make a change. Sports are supposed to be FUN! So, we have some good friends that have their children in a flag football winter league and knew it would be a fun change for him. He was very eager to try it and has already had 2 games!!
here are a few photos from his first game. :)

That is so cute!!

Although this past few weeks have honestly been difficult to go through, it has been so amazing to look at the big picture and see how great the past 4 months have been.

I do want to let everyone know that as of now Vanderbilt's dysautnomia center, won't see Aiden because of his age. We are hoping to see if there is a way around it by going through the pediatric side of things, but it doesn't look like it. The next step is Mayo clinic in Mn... and then of course back to Dr. Grubb. But at least we tried. It is going to work out, I know it.

Aiden has his endocrine appointment next week, growth check again. I HOPE bump up the growth hormones. He hasn't had any growth since November. His pediatrician says he has lab puppy hands, she says she can see the hands are getting big so the growth is coming. He hopes so! :) I'll keep you all posted.

So that is my update on what is going on this week, and a little about what we have been up to and will be doing. Thank you for checking in and I just LOVED all the comments in the guestbook. I especially love reading them to Aiden. It means a lot to all of us.

God bless!!

Team Aiden.

Monday, January 23, 2012 9:39 AM CST

UPDATED from this morning's update Below:

Belive it or not.. they didn't admit him!! whoop whooop!! Our fabulously wonderful pediatrician said, "Well.. since he has an obvious cold, and we know Mason was sick..." she felt comfortable keeping him accessed annd sending him home. we will go back in the morning.. Praying no more fever today. He is feeling pretty darn good, and we acted like idiots giggling and laughing leaving the ER. it was only the 2nd time in history he has EVER left an ER and avoided an admission. We ran out of there like we stole something. LOL!

Anyway, so we are home. I am nursing, Aiden's fever and cold and Mason got picked up early from school due to his croupy cough. Breathing treatments, and tylenol are littering my counter tops. Gee, anyone want to visit?

So that is that, we are very excited that he wasn't admitted, but just still prayerful we can keep him home. They did cultures from his port, and his arm, as well as swabbed his nose for the Flu virus. results will only be heard if there is a problem.

Meanwhile, I'm exhausted and hoping this was one more win for the "let's ditch the port" team. If he didn't have a port, he could be coughing with a cold like all of the other kids.

So, look at me, posting 3 updates in less than a week. Feeling like I'm in my old groove.

THRILLED we are still ADMIT-FREE in 2012.

Lisa

Below is the update from earlier this morning.

Well aiden has a fever of 101, runny nose, headache and mild cough. Aka a cold. But because he has a port it is enough to admit him to the hospital. He is all veiny and dehydrated so it probably would've ended up in an admission anyway.

I am on my cell so this is going to be short. Just say a prayer we can get out of here soon. No matter what being in the hospital is hard on all of us and especially our little lion Aiden.

Xo lisa

Thursday, January 19, 2012 9:54 AM CST

Potty talk:

Thank you so much for reading that gripe session. I feel better after getting it off my chest. One of my good friends has been texting me the funniest (a tad crude) little note for about a week now regarding where she would like to 'kick' Dysautonomia. It has made me laugh so hard, (because I'm childish like that).. and now I want to make it my tagline. BUT since I am sooo ladylike I will just think it in my head. often.

So, like I said, we are tying to kick Dysautonomia in the *BLEEP*, and Aiden is having some success. I thought I would take this time to explain the vasopressin and what it does, and why it works on Aiden.

Vasopressin is a hormone our brain makes. I could go into detail about that, but it's boring. Our Kidneys use that hormone to regulate our urine and the fluid that we don't 'get rid of'. Plain and simple, it balances our fluids in our body.

Have you ever heard of Lasix? Well Lasix makes you urinate. It causes you to lose fluids that are building up in your body, and helps you lose them. Lasix is the OPPOSITE of vasopressin. Vassopressin makes you KEEP fluids in your body.

For whatever reason (most likely damage to his brain from a toxic level of medication) Aiden makes almost ZERO vasopressin. So that would be like he takes gobs and gobs of lasix every day. He is furiously thirsty... drinking gallons of water a day, and he is still deydrated. Why? because it is like his body has a hole in it, you pour it in, and it dumps out.

SO the vasopressin is given to help him retain fluid. The problem with AIDEN is.. he has autonomic dysfunction. And somtimes his whacky nervous system doesn't care if he gets the hormone and sometimes it cares too much. When he is in a crisis like the last week, his fluids are a mess. His cheeks are veiny and blotchy, his blood pressure drops very low, and his heart rate drops low.

They asked us to increase to a third puff of the medication, only at night because it can be very dangerous leading to 'water intoxication'. That is where he doesn't lose enough fluid and he puffs up with too much water. This COULD dilute the electrolytes in his blood causing him a life threatening issue, and even death. SOOOO you can imagine Joey and I are scared to death of this drug, especially when he is flaring with his dysautonomia. It is scary!

The other morning I knew we had an issue because his face was so swollen when he woke up... we have to stop all fluids. Even with these extra hormones we can't realy get it right. This is what he looked like. The eyes were so puffy he said it was uncomforable to keep them open.

We took that photo for his endocrine doctor so she knew the issues we were having. Just like with blood pressure meds, Aiden can NOT be on them because his dysautomia is soo unpredicatable. Blood pressure too high.. then dangerously low.. It is just so difficult to treat him effectively. (oh wait isn't that the definition of dysautonomia? yup it is!)

So.. the medication vasopressin, our wonderful drug that is treating the main reason why he is so frequently admitted is working very well. Just not perfectly. And that is ok. I just thought I would explain to you.. rather introduce to you this miracle medication that has kept him out of the hospital.

I also wanted to show how precarious of a situation it is. Too much fluid and too little fluid can be life threatening. With each puff it is still a little scary. The drug is very expensive and we usually have to pay out of pocket for it, because we have so many insurance issue with it. But it is all worth it.. it has helped him so much.

If nothing else I wanted to talk about this medication because it was another road block about why I haven't updated much lately. We struggle day to day with the effects from it. Sometimes it works, sometimes it doesn't. it is complicated. I don't know why it doesn't work at all in the pill form for him. I am so thankful we tried it again in this nasal form.. and pray to God we can even get a better plan in the future.

In other news, I would like to ask you to please pray as we are considering bring Aiden to Vanderbilt's Dysautonomia Center. It has been a consideration for a long time, but we aren't even sure they will see Aiden, being that he is only 9 years old. (it is an adult center)So pray that it is the right choice, that if it isn't the doors will be closed for us. We aren't sure there is anything anyone can tell us we don't know, but you know me.. I can't help but seek out to make sure we are on the right track.

maybe it is denial, maybe it is just my crazy optimism.. but I will never give up hope that we have this whole diagnosis wrong, and there is just something better more treatable around the corner.

Thank you for checking in, and keeping up. I am happy to report today his belly pain is completely gone. He did vomit one time today, but that sadly is a very common occurance for him. otherwise he is having a pretty good day. Praying this terrible week and a half of misery is almost behind us.

Love and hugs and THANK YOU for those wonderful encouraging notes in the guestbook!! I love you guys!!

Team Mom
aka- feeling like a pharmacist somedays

Wednesday, January 18, 2012 6:30 AM CST
If you are looking for Suzy Sunshine, she has left the building.

It has been a pretty terrible week and a half. I keep thinking, if I don't update about it it will become a blip on the screen just like the other times. But it isn't a blip it is difficult to watch and yes even though he isn't hospitalized it is just the exact same as watching him suffer at home. What's the difference? The hospital is worse for him. At least here, he can move around the house walk out side, play his toys and not be exposed to hospital germs. But the discomfort, never ending-unrelentless nausea is what is just making him crazy. And myself, watching it.

We got the ok to increase the Zofran dose a tiny bit and it doesn't even touch his nausea. He walks around with his belly distended and moaning.. "Touch my tummy.. pat my tummy.. I feel bad.. I am sick..." I try to remind him that the affirming words towards illness sometimes make us feel worse and he looks at me like I am completely crazy. "Uh momma, I'm sick.. saying it in't gonna make it worse." I know buddy.. if that is what makes you feel better or help you cope, then talk all day, I am listening.

(stab knife in heart)

It is really hard when we know we have just really made the biggest leap ever in his disease with adding the vasopressin, but to see it just not even really helping him during these times of 'crisis' is a tad disheartening. I repeat to myself, at least he is home. And that is big for all of us, we are all together.

I know I have been intentionally quiet on this page. I know the readers have dwindled down to those who aren't on facebook or those who are precious and just want to really pray for Aiden intentionally. Thank you for not abondoning ship, even when I want to. I will say, please find me on facebook (if you aren't a stalker or killer) I update there with more details on a daily basis. I am sort of at a cross roads on this page because although it has been such an incrediable tool for learning, sharing to our family and friends who have prayed and prayed for Aiden.. it is also mainly my therapy. I know that sounds selfish, but Ya'll keep asking me.. "How do you do it?" well talking about it, sharing, processing this in the written word is one of the ways I "do it".

I feel semi guilty ~~(read really guilty)~~ when I just want to come here and pour my guts out and say.. 9 1/2 years!! Really!!??!! I am so stinking exhausted. I feel alone, I don't know many who have a child who has been this sick for THIS. MANY. YEARS. In the thick of it, hundreds of days in the hospital, admission after admission. It is EXHAUSTING seeking diagnosises to come to dead ends and then to only stumble apon medications that had already been tried and failed. I mean Who the heck lives this life!? For nearly a decade?

We do. And sometimes I feel alone when I talk about it. Ok All the time I feel alone in it.

Here is where the inner self begins to argue with what I have written above. I feel the need to make the caveat.. "I am so thankful, we are so blessed, and it could always be worse".

I don't say that because it is lip service, I say that because *I* believe it. We are so blessed in comparison to so many... but dang it, I am AIDEN'S mom.... and it is SO hard to see him laying on the floor, moaning. Missing school, unable to keep up with friends, and all the while knowing this isn't going away unless something BIG happens. It can get better, it can become a more normal quality of life (which it has) but sometimes it is hard to sit in the boys school, volunteer week after week, seeing children who have never and will never spend one moment ever enduring a speck of pain and illness and fear that my child has. I don't ever wish this on anyone, but I want to wish it OFF my sweet son. Why him?

Life is complicated and there just is no pretty box I can wrap my feelings into. There is no one way to feel, it can be messy and confusing and right now it is. I look to the future with hope, but honestly somedays I look at it with real concern.

I know this too shall pass, and we will continue to grasp towards more healthy days, but right now I just ask for prayers of relief for Aiden. That this nausea and autonomic dysfunction just ceases and he can feel stronger and better over the next few days.

Thanks for believing with us. For the sweet guestbook notes. Sometimes I come here and read the guestbook.. (of course wondering who the heck would think any of us would buy flowers from India? spammers on caringbridge seems pretty sick).. but I read the words and know certian people who are faithful in their prayers and comments and I want you to know HOW much that lifts me.

Anyway.. I will update soon with more.. I really will.

Lisa, the Team Mom.

Friday, January 6, 2012 3:07 PM CST

9 years post transplant, 4 months with out one hospital stay, Principals list in school, days and days where he is so healthy I almost forget, trying new sports, growing taller each day...

This is the best time in our lives.

My son has mulitple diseases, complex diagnosises, so many things stacked against him, and now... he is beating the odds.

"Then I will go to the altar of God,
to God my exceeding joy,
and I will praise you with my song of joy,
O God, my God!"

�Psalm 43:4

Saturday, December 17, 2011 8:17 AM CST

I apologize I didn't update again. The interenet at the village was terrible. I couldn't view any photos and after writing a beautifully detailed update with photos included, it said I was timed out and deleted it. I gave up. After we got home we have been on non stop "go" the entire time! Which is wonderful!

The wish trip was more than a wish, more than a dream.. it was a life time of memories. I know they are both old enough to never forget and of course Joey and I will never forget.

It was so crazy because even with Aiden not feeling well for a few of the days, there was no stress! None.

Everyone made this trip AMAZING. Disney and Universal were just outstanding. Nothing compared to the amazing treatment we recieved at Hollywood studios. We met a woman named Carol and she just went above and beyond. She got the boys into the Jedi training, then they got to meet the 'dark side' after the show for a private photoshoot. (those pics are the only ones that didn't turn out well bummer). They had the boys act as "junior directors" of the Indiana Jone's show. It was so adorable!! After the show, Indiana (aka James) gave Aiden is very own real hat from the show, and Mason another hat. Both signed.

People would smile and ask how we were doing.. it was precious how many people just showed they cared. At Seaworld one of the employees, John, went SO above and beyond to make it so special. They gave us 2 extra free tickets so my parents could come along that day. Seaworld let us feed the dolphins, and watch the shows from a VIP area. It was outstanding!!

It was so wonderful to be able to explain to BOTH of the boys why people had been so kind to them. It wasn't because they just wore some button .. but because these wonderful people (and companies) CARED that they had been through so much.

You know, these wish trips aren't just about the one wish child. Absolutly this is about Aiden going through living hell for so many years, but at Give Kids the World, they realize the siblings like Mason also have a difficult time. It has been so hard for him to watch Aiden be pulled away on a stretcher going into the back of an ambulance. So many things Mason has seen that would traumatize anyone.. none the less a small child. It was just as wonderful to treat Mason super special as it was Aiden. It hasn't been easy for any of us, we can't forget little brother.

This trip afforded us the oppertunity to be able to show both of the boys what it was like to just say YES. We don't have the money to be able to go on vacations and trips.. just going out to one of those dinners would have been difficult for us. It was something I hope they never forget. Less about the 'things" but more about the time together, stress free and being treated so wonderfully.

I have photos.. I have pictures galore! I am going to make a slideshow with all of the amazing things we did, I just need to upload everything first. In the meantime, here are some of the wonderful pictures we captured on this trip from day 1. Thank you for understanding about my lack of updates, so many times I ment to get on the computer but with this being the last week of school before the break, it was just too much to do it all.

Enjoy just some of these photos and Thank you all for being so supportive of our fight with Aiden. I feel like we are having the victory we dreamed of. Thank you Lord!

DAY 1 slide show:

Today i will upload day 2- 6 also. It was amazing and you can tell from those smiles, how special it was!! Thank you Marty Lyon's, Mrs. Fraze with Hospital homebound, Dr. Cross, Wendy, and all those who worked SO hard for Aiden to have this amazing trip. We will never forget it!!

Tuesday, December 6, 2011 7:17 PM CST

We are on our wonderful wish trip to Give Kids the World in Orlando. They have been amazing. It is exactly like people say it would be. Magical.

We have been basically been given a VIP more to every major park in Orlando. No waiting in ANY lines. Every cast character will do photos with us with no wait. a DVD/ CD of all of our photos.. the list goes on and on.

We feel so thankful for our wonderful Homebound teacher Mrs. Fraze for working so hard to get this for Aiden. He is having the time of his life.

THE BEST part, hands down is the food. They have made it safe for Aiden. This morning the lovely workers at the Village's resturant named the "gingerbread House", let Aiden wear a full chef outfit and make from scratch safe pancakes! He got to flip them and everything. It was probably the highlight of his trip so far. Just eating with out fear. With out packing it. It has been awesome.

Yesterday we did a local attraction. It was an airboat ride and gator hunt. It was cute. I mean.. well.. the boys liked it. Enough said.

Today was the long awaited Islands of Adventure.. The Wizarding World of Harry Potter. I am not sure if it was just too much excitement for Aiden or what.. but he wasn't well from the beginning. We got in there and he hit a wall. It was about 30 minutes into it and he asked to leave to go home. It was heartbreaking because I know he wanted SO badly to be there. We amped him up on hydrocortisone and zofran. Waited. Prayed. And he either 1) got a little better 2) faked it and pushed through it so he didn't miss out. or 3) a little of both.

He never really rode any real rides today.. we have stroller as wheelchair, and I was thinking he just needed a place to lay flat. The stroller was designed for 2 years olds or something. Tiny.

We did have fun, and it was very very special. Never waited for a line and then when he went to the wand store.. he was selected to be the boy who the 'wand chose'. I cried. He can be so painfully shy at those moments but when it is done I asked, "but do you still like it? Even though you are shy?" And he says YES!!

The village is an amazing place. They have made him Icecream sundaes (safe!! with rice dream icecream) every day. They let me go into the fridge and read labels and even serve it myself. It is just what every allergy mom wants. Control.

He did get sick (in the litteral sense of the word) tonight. He is on the couch, back in our usual Aiden fashion while Mason did the dance party and somehow charmed the 'girls' (cute college age volunteers that have fallen for Mason) into a handful of Harry potter t-shirts! Hey if I manage to lose 40lbs I even got one for me! LOL!

Aiden and I are watching Lion king, and resting. He says he doesn't feel sad he is sooo happy. He loves cudddling Momma and just LOVES the fact he just ordered ANOTHER icecream sundae and Daddy and mason are bringing back to our villa. :)

This is part of the deal. If I could just poof make him FEEL as good as he looks, then he wouldn't need a wish trip. But this is life. It is honestly OK! We are soo stinking excited!!!

Tomorrow we head to Disney's Hollywood Studios in hopes Aiden and Mason get to do the Jedi Training. We have tried to organize it in advanced but it looks like we just show up, show them the "magic button" (GKTW button) and it will happen. Disney has special "wish lounges" which are peaceful areas that ONLY wish children can go in to rest. Free water and snacks. We WILL be using this tomorrow. Resting is the key.That and MEGA steriods.

I have so much more to update with every detail but I think I want to get off the computer and resume my snuggling with that awesome brave boy. Have a blessed night and remember when it rains.. DANCE in it!!

Love,
Lisa

Sunday, December 4, 2011 5:38 AM CST

I said I 'believe' it could happen, but for some reason I am in shock it did.

No admittance in the month of November.

No admittance on Daddy's birthday.

This has never happened in the life of Aiden. I said I 'believed' but it seems unbelievable to me.

I went through a two day stage where I was gulping down tears of joy whenever someone would say, "wow.. Aiden is doing amazing'. I mean they would just spring from my eyes and I would make this embarressing cry. Now I am just mouth agape and looking shocked.

He had such a crummy week, even last night gobbling down the zofran, but we did it at home. The future for him with these new medications seems to only go up from here. I know the dysautonomia doesn't seem to want to go anywhere, but just treating him with hormone replacement is SO much less invasive than IV's and hospitals.

I shiver sometimes when I think of all he has been through. Mornings where he would crash and I would have to somehow carry his limp body to my van. Run back to grab a terrified Mason, then drop them off at my parents on the way to the Emergency Room. Each time I would cry out trying to lift his heavy body, wanting so bad to just swoop him up like Joey does, but I just couldn't carry him, plus the bags, and keys. It has been a living hell. Watching him time and time and time slip in and out of an alert state, vomitting, blood pressure dropping, him slowly falling into a place where he would not wake up for needles, and pokes. Time after time... after time.

Like a broken record I prepare for it. I become terrified for it. Is today the day? Will this day be shattered with panic and fear. Now that record seems to have stopped playing. Our prayers are answered. What seemed IMPOSSIBLE to doctors all over the country, has happened.

I don't know why he has so many diseases and conditions that are so rare. Is it from the transplant medications? Would he have been born this way with out the liver disease? I don't care anymore. I can't harbor anger in m heart while at the very same time rejoice.

It wasn't for me. It wasn't for Joey. Us begging for this miracle was only for Aiden. If you could only meet this child. He never complains. Loyal to all of his friends. He loves people so much. Tries so hard in life. He is funny and witty and has just the most kind heart. But there is a sadness to Aiden, he has grown older and has seen so much. Things no one his age should see. All of our prayers were for HIM... we wanted to BELIEVE. I would do anything to see him have the oppertunities that other children his age get to have. He has watched friends for years not appreciate the things he DREAMS of having. And now some of those dreams are coming true.

No hospital stay since August. None.

My promise to Aiden to Mason, to my husband. I won't look back. I won't get stuck traumatized by the horrors we have seen. I won't reflect unless it is to JUST rejoice in our blessings. I won't spend one moment of health, thinking of how bad it was. I will try not to cry for myself, unless it is tears of thankfulness. I promise to not grow any bitterness at the days and years lost. It is time to live and look forward.

Sometime you just have let go trying to heal from things you just can't heal from.

I have a new prayer request one that seems so excited to ask of you. It is exciting because this time I actually really do believe it will happen. Pray he port can be removed. The port has given him two life threatening blood infections. Although his doctors are firm about keeping it, I believe we are on a new path. No port means he can have a normal childhood fever and stay at home, no risk for line infections, and best of all I can hug him fully tight. Squeeze my little boy while he still wants to be squeezed tight. He always guards that shoulder, and I want to feel both arms tight around my neck.

Thank you for not giving up on us! I hope you stayed around to witness what *I* call a miracle. Sometimes miracles are in a hormone replacement. It doesn't have to be a POOF magic scene from a movie. Sometimes it is a slow painstaking fight and then we stumble apon it.

Tomorrow morning, we leave for Aiden's wish trip to Give Kids The World. I will be updating EVERY DAY with photos and stories. PLEASE pray he can get past this crummy feeling has been feeling this week. Pray that he has the energy to enjoy all they are offering him. Pray Mason feels that this is JUST as much for him as it is his big brother. Years of watching his brother go through traumatic events has shaped Mason into this very very tender spirit, and I want to see him let go of some of that and heal as well.

We feel so thankful and blessed. God is good.. even when we were at the worst, and now when it is the best. Always, He has been good to us.

UPDATED tomorrow from Aiden's wish trip.

Love, Lisa

Monday, November 28, 2011 12:52 AM CST

Well, he's sick. Started on Friday night and just hasn't really let up much since then. It has been really amazing though watching how his 'brain' WANTED to have a crisis, but with all of our new medications on board his Body held off. Lots of bad symptoms just not a full blown crisis.

He isn't admitted and hopefully he can manage this at home. He is doing his zofran and now increased doses of hydrocortisone and desmopressin. The desmopressin acts almost like he is GETTING IV fluids. Instead of us pumping fluid into his veins, we are now giving him the anti-diaretic horomone so his veins KEEP the fluid in them.

It's sort of working. Kind of.

I will say, we aren't sad or totally bummed out. This is managable. I mean honestly we went to his doctor today and we talked about how GREAT he has done otherwise. If he gets sick only a few times a year but in the 'in betweens' is as healthy as he has been, then we have achieved success!!!

Like I said before we don't need him to be "perfect" we just want him to have a future. We just yearn for him to have the childhood where he just feels good.

So that's that.

Say a prayer he can stay healthy! He leaves for his wish trip in only 7 days. We can't even stand our excitment. So many things to do, no time for sickies!

Thanks for praying and checking in!

Love- Lisa

Thursday, November 24, 2011 5:29 AM CST

Thankfulness to a whole new level.

prepare yourself for the world's longest update.

Ok yes I woke up at 5 am this morning. I couldn't sleep because we did the usual musical beds last night and I was the 'winner' who got Mason in my bed 'after a bad dream'. Mason = leg flung across my face and snoring. So 5am was enough sleep for me. I was up, brewing coffee and setting out the ingredients for the Divvies allergy safe chocolate cupcakes. Yum!

I have been really blown away at the life change we have seen in Aiden and how we almost 'stumbled' apon it. It seems honestly so insane that this has happened. For years now we have KNOWN that Aiden's worst symptom, (the most debilitating symptom) was the inability to stay hydrated and keep fluid in his vessles. He would have a 'critical loss' and litterally a life threatening crisis for what seems no apparent reasons. The only thing to stop the crisis was fluids. Sometimes we would endure months on home IV fluids just to TRY to keep fluids in him, but alas he was unable to do it. It was like a bucket with a hole in the bottom. Pour the water in.. and watch it drain out.

This isn't your run of the mill 'dehydration'. This is lack of electrolytes that keep heart pumping normally, type of dehydration. If you have been reading this site for any amount of time you all know my frusteration with this. By 10 am Aiden will drink 64 ounces of gatoraide, an entire daily serving of fluids. Just in the morning. After measuring he would have nearly 2 gallons of fluids. All gone, dehydrated.

Over time we knew this was his number one most dangerous symptom to his dysautonomia. Blood pressure, heart rates, all of that seemed to be up and down but never critical. It was the fluid.

Here is an excerpt from an update I wrote on
Saturday, March 28, 2009

So... the appointment went well. Dr. Grubb was as usual very informative (Joey and I felt really stupid by the time we left) and used his handy dandy power point presentation to explain why Aiden is exactly like the way he is...

In the office Aiden's blood pressure skyrocketted to 148/87 just by standing. His brain knows that his blood pools in it's legs so it picks up the blood pressure to keep it pumping back to it's heart. Aiden lays down and wham.. it is bottomed out. Poor body just isn't doing what it should.

BUT

we are getting closer with more answers on what to do.

....In the mean time while they battle out the idea of a pacer or not.. they are going to start Aiden on a second drug used to CAUSE fluid retention.

I know this is all confusing and weird and it sounds sort of crazy. But it is real! They are going to place Aiden on vasopressin. This is used for people with CENTRAL DIABETES INSIPIDUS.. (not diabetes.. this is different). It keeps you from peeing out all your fluids. Which we know is one of the things that causes Aiden a lot of problems. He can't keep fluids in his vessles. Remember the 1 month of IV fluids and Aiden being DEHYDRATED only moments after he was unhooked??!!

I am SOOOO excited about this drug I can't stand it. BUT.. of course there is a but... we have to make sure his nephrologist aproves.

********************************************

Did you read that?

2 1/2 years ago, Aiden went on a 1 month trial of vasopressin. A hormone that our brain makes that keeps fluid in our body. A hormone we know now, he can't make.

We did the 1 month trial and it failed. I remember being devastated. I THOUGHT it was IT! I remember calling my friend Cheryl, panting I was soo excited, telling her that we FINALLY are getting there. And then BAM. Nothing. It didn't make even the SLIGHTEST difference.

So on Aiden's birthday THIS year, he gets admitted. Poor boy misses his own birthday party. But we get the greatest gift of all. Aiden's wonderful kidney doctor, Dr. (perfect hair) Flores listens to the nurses, telling him how he lost almost double the fluid he had taken in, and tries one more time to do a mini water dperavation test.

(do you remember this?)

I will never forget when they deprived Aiden of water for only 12 hours. That was from 7pm till 7am and then did the test in the morning. Dr. Flores actually looked at me in the MOST serious tone he has ever had and asked me, "did you cheat?"

HUH?! Uh no. of course not.

"Did Aiden cheat? Did he get up to drink?"

Nope! I promise.

"How do you know? did you watch him all night? Did he go to the bathroom, drink from the faucet?"

HELLO! NO NO NO.

And at that moment we knew the results were very very obviously not normal. (I mean we kind of ALWAYS knew that, but to get the fancy shmancy labs to verify what we knew just ment more).

Aiden was completely unable to concentrate his urine. We were SURE it was his kidneys. We were beginning the road towards kidney transplant and this was it. We were devastated. We knew this because when Dr. Grubb tried that drug and it didn't work, it 100liminated the chance that Aiden had CENTRAL diabetes insipidus. So now we assumed he had Nephrogenic (kidney) diabetes insipidus.

We assumed wrong.

(I know I am spelling this whole thing out again and again.. but this is Thanksgiving so I am getting to my point, bare with me.)

2 weeks later (May 2011) the fancy shmancy tests revealed his pituitary gland in his brain was not making vasopressin. It wasn't the kidneys.. it was the brain. But, how can this be? Can he have both forms? Why didn't the drug work?

We immediatly get an appointment to see Aiden's growth doctor, and endocrinologist, and tell her the findings. I will never forget how she sort of just stared confused.

here is an excerpt from that update:

August 2nd 2011: This is a conversation with the doctor

Update:

So back to what happened this thursday: SO I am wincing, asking her, "So umm what did you and the kidney doctor (perfect hair) speak about this diabetes insipidus situation??" still wincing, not really wanting to talk about this.

She says: "What? Oh. Yeah. That."

Me: "well, what do you think? I mean umm isn't this just riduclous? I mean, don't you think that this is just his dysautonomia confusing everyone?"

Her: "Well, Aiden likes to do things differently. Has he had an MRI of his brain? Do you remember what his ADH level was when they did the water deprevation test?"

me: "I am SURE he has had an MRI of his brain. Heck I bet he has had one of his pinkie toe.." inapropriatly joking, now looking even crazier to her.

Her, not waiting for my real answer: "OK let me think about it. Let me just think about it and get back with you."

Me dumbfounded: "Oh. yeah. Sure, yeah.. call me?" feeling as if we would never utter another word on the topic, I gathered up my kids, bags, DSi's, papers, scripts, and appointment slips.. tucked my tail and ran.

SOooooo... to my suprise, today my phone rings, and it was the doctor. She must have thought about it. wow.

So she researched his MRI brain results and came to find out, I was indeed wrong (this is a rare occurance people!) and he never had an MRI of the brain. She also looked into the water deprevation testing, his ADH levels and thought it was all very confusing as the kidney doctor did. She asked specifically about the time Aiden went on a trial for vasopressin....

She says to me, "What FORM of the vasopressin did Aiden take?" I reply, "the pill form". She then explains that often the pill doesn't work with patients with other issues, and she would like to try the more potent form of vasopressin. The nasal spray. TODAY. As in TONIGHT. As in.. new medication, in my home. EEEKS!

So, we talk more and she says things like, 'I doubt it will make ANY difference, but it is good imperical data".

Good imperical data. Yup. we just keep collecting it. One day we will put all that data together, add 2 bucks and get a happy meal.

But of course, this churns the dashed hopes up in Joey and I. Well just in me, Joey thinks it is a total waste of energy. The eternal optimist in me, is always hopeful we will solve the puzzle of sweet little Aiden. One day....

**********************************

It worked.

2 puffs of this medication that is nearly IMPOSSIBLE to find, order and purchase. A drug that when you read about it, says: "only use in hospital setting." A drug that people really stopped using because it is inconsistent and unreliable, since it is in a spray form. (at the end of the bottle the sprays become less and more ineffective).

But it works.

It is our miracle. THE MIRACLE thar we have prayed and prayed and prayed for. We don't know why he has this disease it is more rare than his liver disease. There is major debate whether the dysautonomia has caused this part of his brain to not function... or if this causes the dysuatonomia. His medical team all believe the dysautonomia has caused this disease, because he has too many symptoms that aren't able to be explained with just this.

I have never asked that every scar be wiped away, that every diagnosis be gone.. this is who my child is.. I ADORE every speck of him. JUST the way he was made. He wasn't a mistake or an error. God didn't screw up, He BLESSED this child with so much. He has great plans for him. We have just asked God to keep him here on Earth. To let him live. To give him a life that wasn't full of terror, discomfort, pain, sickness. A future.

I am positive we have finally defied the odds. I am POSITIVE, the terrible outcome that we were told could happen to our sweet boy has completely changed and reversed. I am positive that God's mighty hand has in HIS perfect timing brought our child a medicine that makes his life so much better.

It worked! I am just in awe.

It has been 100 days since he has had an IV. Since he was admitted. Since his last crisis. This time of year we normally would have been admitted 5-10 times by now. All emergent life threatening crisises. All terrors, all nightmares. And now it is ZERO. None.

What could we POSSIBLY be thankful for this year? This day? This week? I think you all know.

Thank you God for my Aiden. Thank you for my sweet Mason. Thank you Lord for Joey, who has encouraged my fight for Aiden. Who is the best father in the world. Thank you Lord for medicine, and doctors, and nurses and IV poles and everything that has sustained us, up until now. Thank you for our friends who never turned their backs. Who listened to our tears, but who also laughed with us along the way. Thank you Lord for a new HOPE, for a new FUTURE. For a new beginning.

This Thanksgiving, has been the very best, the most wonderful we have ever had. I pray that yours is just as wonderful.

Thank YOU all for never giving up. I believe this is just the beginning of what is yet to come. God bless, Happy Thanksgiving, and hug those you love tightly.

With JOY exploding,
Lisa

Thursday, November 10, 2011 4:20 PM CST

YAYYY I am typing u's and M's with nooo problem. WAHHoooo.. I can't even explain how ANNOYING that was. I got the new laptop antivirus'ed (verb?).. and so I immediatly went to the caringbridge page to update.

I really want to update about a few things. I have so many photos and things to say, but can I just first shout out the elephant in the room? (please don't like jinxing be a real thing)

HELLLOOOOO it is NOV.EM.BER, and Aiden is doing AMAZING!!! this has never happened. Ever.

I
guess
when
you
treat
THE
disease

YOU CAN IMPROVE!!!!! (Imagine that!)

I am not going to go nutty (just yet) and declare a victory, but I am thrilled. yay!

I really can't wait to show some of these beautiful photos from Aiden's baptism.. I am going to place a slide show on here as well.. but here are a few of my favorites:

only God!

Ohhh can you just imagine how precious it was? It was so sweet. We were blessed that one of his best friends was also baptised that very night, and we could share in that memory forever.

Here is a little slide show of some of the other happenings around the Hawk house. I love that one of the photos include our beloved Ms. Moore and Mason giving Bear Hugs at the pumpkin patch. There is some of baseball, Mason in school, Aiden in school dressed up as a vocabulary word "vanquish" (ahh I can type that word with my 'u' key yay!) There is the beautiful beach baptism and then legoland with our best buddies:

Things are going very very well for Aiden in school.. he is straight A's right now, his teacher is amazing (like his past teachers have been) and was elected for his class student council represenative and is this week running for the school Vice President. He says he doesn't care at all if he loses (and he means it!).. he just LOVES to particpate.

Mason got Student of the Month this month. To be honest with out going into detail he hasn't had the best school year. We are working hard to get it resolved and can't wait to see him flourish and grow by leaps and bounds soon.

We also had a VERY successful toy drive for the Haley Vincent Foundation. Hundreds of BEAUTIFUL toys were collected (in my tiny dinning room) and then this week Aiden and I donated them in her honor. Aiden was beaming from ear to ear and was telling people how much it ment to the kids to be remembered.

I had actually had a bad day last week and was planning on updating a sort of 'dark' update about this very topic. I had seen a lot of people be very umm, aloof ummm.. uninterested.. unmoved.. whatever you call it regarding the toy drive. It kind of ticked me off. (being honest). I guess though if I Never had to hold my child down screaming in pain, or see them go through the Operating room doors not sure if I'd ever touch them alive again, then I guess I wouldn't really 'GET' why it was such a big deal to just buy a coloring book for those same kids. BUT... I prayed and prayed for grace and peace and understanding that yep.. God doesn't actually give us all the same battles to fight and yes, to some people they are so removed from the idea of ever losing a child or having one become sick, that they can't understand. And.. and.. THAT is probably a good thing.

So.. I am sure you are glad I worked through those feelings all by my self and didn't have to subject you all to it. (since all of you DO get it.. and don't need the lecture LOL) But I digress....

So we had a blast with the toy drive, we are actively counting down the Wish trip to 'Give Kids the World" and we are just thanking God for every day of health and peace we have. THANK YOU GOD!!

I am really excited the 'good' laptop is working so I can update my blog with all of my awesome repurposed furniture I have been working on.

Big things are happening in the Hawk house which I can annouce in the upcoming months (no I am NOT pregnant people!) but in the meantime.. believe me when I say I have a lot more updates and photos where this came from.

Love and thankfulness and JOY

Lisa

Wednesday, November 2, 2011 3:29 PM CDT

So it has been a while. I am using Aiden's homebound computer because I am currently missing the "u" and the "m" keys on my other computer. Seriously. So this is why I haven't updated. Not to say I haven't had things to say, just haven't felt like doing the copy and pasting of those two letters like I have been on emails. Now everyone who has seen my writing for the past 3 weeks is nodding in understanding why I can't seem to spell.

I just came to really say that things have been going very well for Aiden. In a tiny rough patch.. but that isn't why I'm updating. I am updating because I have the wind knocked out of me recently. I learned of a liver friend who passed away. A child who I honestly had grown to love. One I thought if Aiden and him lived near each other, would have been best buds. A boy who had already suffered so much.. had died. He and Aiden loved the same stuff they were the same age, they had the same original disease... And now he is gone.

He actually died earlier this year. I didn't know. I had changed out from my old computer and lost so many of my favorites. I hadn't been visiting as many caringbridge pages because I was on facebook, thinking I was in the 'know'.

And I didn't know.

I just spent the last hour crying for a friend I had lost touch with, but in my naivety I just assumed we hadn't been chatting because things were just going so darn well.

Not because he is in Heaven.

I just wanted to immediatly come here. Use Aiden's old re-finished computer and share in my thankfulness that my sweet boy is still here. Thankful for every moment he lays on a couch not feeling good, because he is still here. I won't take it for granted. I won't ever stop thanking God for every moment. Every precious moment we share with him. Sassy, sweet, lighthearded, deep... every moment.

please pray for Roger's family today. Pray for my friend Dawn who I'm so sorry I lost touch with... and go hug your children or loved ones.

I'll update later tomorrow with photos from the most beautiful beach baptism I have ever seen. Sweet Aiden at sunset. Thank you Lord.

Clinging to the Cross,
Lisa

Tuesday, October 11, 2011 11:43 AM CDT

holy mamma! I just tried to log in to update and they changed the whole face to caring bridge again. If you are 'lucky' enough to have a "classic" page (aka you have had a caringbridge page for many many moons) then you have to search to find how to access it. It took me about 15 minutes of panic to find how to log in. Thankfully I figured it out. Phew!

Honestly I don't know many poeple who have these old caringbridge pages anymore. I like it way better for design and lay out (I can add music, and photos) but it doesn't have one of those fancy dancy 'sign up' buttons where you are notified each time I make a new post. I guess I like that also, because I don't want to invade anyone's life. Come check out how we are doing on your own time, I love our visitors and love how when things are calm like this I can just feel free to hijack the page and just ramble on about our happenings. No 'alert' needed to your email that I am about to post something non medical.

So yes that means things are calm. Things are wonderful! I am loving this phase we are in. Not so much zofran, not so much ickies, and lots of good days. Ahhhhh. The weather cooled down last weekend and Aiden was pitiful. He was grabbing his gatoraide and his trying to eat veggies for extra energy. He was so afraid he would have a crisis. I hate that a weather change scared him, but to be honest I was doing extra laundry and preparing for a possible admission myself. My little barometric pressure reader. For whatever reason, he did fine! I have no idea what exactly happens when the weather changes that throws him into a crisis, but it seems the little change wasn't enough, or the trigger. Crazy I know, but just think when it is a dark gloomy day and all the people who complain of headaches. "oh it's the weather"... it is a real thing, just for whatever reason, it doesn't just cause the headache in Aiden it makes him tip that whole nervous system into a crisis.

Weird. I know. I never imagined I would think of the leaves changing, pumpkins on front porches, and think... "oh it's Hospital season", but we say it. tounge in cheek, and all. ;)

So back to the good happy update. School is fabulous so far, Aiden went an entire month with no absenses. He left early several days, but he hung in there. I announced it on Sept 30th on facebook and hugged Aiden that day, and he corrected me and insists he did miss 1 day. I don't remember it, and for celebration sake, we will just say it didn't happen. So... yay Aiden! A whole month in school. Amazing!

I had been asked if he is still taking his growth hormone shot and we are nearing on the 1 YEAR anniversary of it. He has grown just a little under 3 inches in the year. It is very exciting. Not at all what they want him to do, but for us, we are THRILLED! His growth plates were closing already due to his high levels of steriods and he hadn't been growning at all the past years. His friends had been sprouting past him and it really became obvious. Now he is still very small for his age, but he has grown. They want him to still achieve what they call "catch up" growth, that means he needs to grow faster than the other kids so he can shorten the gap on them. I am thinking he will need an increase in dose for that. We go back for an appointment next month.

We are finishing up the VERY EXCITING plans for Aiden's second wish. Aiden was offered a second wish by the marty Lyon's Foundation this year. His precious teachers at Hospital homebound, our new friend Wendy with Marty Lyons all fought for him to have this oppertunity. I was honestly SHOCKED he got the offer for a second wish, but also very humbled by the conversation the organization had with one of his doctors who made a special plea for Aiden. We are so blessed.

So Aiden chose a wonderful wonderful wish trip... First and foremost it wasn't his first request, he actually orginally asked to go to the mountains, get a cabin, do dollywood, hike, campfires, etc etc.. but after the joyous trip to the ER from hell, Aiden begged to not have that trip be his wish. Thank you Dr.Psycho for ruining that for him. Anyway, he was thrilled to be offered a trip to Give Kids The World. It is a beautiful place where so many of our transplant children have chosen for their wish trip. (sad that I know so many families that have children offered Wishes). We have visited several families there, including angel Haley, and sweet NatalieBear.

"Give Kids The World's founder, Henri Landwirth, knows all to well what it is like to give up his childhood. Born in Antwerp, Belgium, on March 7, 1927, Henri and his family were separated and became prisoners in the Nazi death and labor camps during WWII. Henri spent the years between the ages of 13 and 18 in camps including Auschwitz and Matthausen. By war�s end, both of his parents had been killed, but miraculously Henri and his twin sister, Margot, survived and were reunited..."

This man who survived a concentration camp made a VOW that no child would lose their childhood if he could help it. He created this magical place where sick children with lifethreatening illness can have icecream for breakfast, visit theme parks, have a 1 week vacation away from their normal reality. Santa comes 1x a week with gifts, they stay in their own villa with the child's name on the mailbox. It is a magical place where other families who also are fighting for their children's lives will stay. A place where no one is 'different' and every child.. gets to be a kid.

below is a touching story from the today show about some of what they do:

http://today.msnbc.msn.com/id/26184891/vp/38466034#38466034

Sooooo we are going the week of December 5th!!!! Poor Joey has only had one birthday as a father outside the hospital.. so it seems like a timing gamble to schedule this only 2 days after his birthday, but we just can't let Aiden's disease scare us from making plans. (ok so it is totally why we didn't pick November though lol).. we are soo excited, the chance for our family all 4 of us to be together for 7 days is honestly amazing in itself, but to see Aiden have this just because people care, make me want to burst. God bless them.

The main reason he chose this wish, according to Aiden, was because he 'could eat out' every night. With Aiden's allergies there really aren't options for him to eat at resturants. like ever. However, Disney has managed to create the MOST safe and amazing allergy friendly dining in the world... Aiden just wants to eat out for dinner. That basically was his wish. So sad!!! But sooo sweet.

I LOVE that kid!!

Anyway, so of course as the time draws nearer we will share more.. and maybe do a countdown ticker on the page (going to find one now!).

It just is so exciting and we HAD to share. I know there will be visits to Harry Potter world, and Seaworld, but it is all about those disney resturants and just eating like a normal kid for a week. God bless him!! (and Marty Lyons Foundation for making this come true!)

In other news, we are doing the usual baseball and school and running around. It has been great. I created a little business for myself (in my spare time HA!) and finally sold some things. YAY!! I have a blog that you CAN follow and would love it if you would!

www.spottedhen.blogspot.com

I have been painting furniture for a long time, but just was encouraged by several sweet friends to consider doing it for extra money. I am so glad I took the leap and did it. It is a fun hobby and very much an extension of my card making, but just now on wood.

Anyway, that is all for now! Wonderful isn't it?

Have a blessed week!

Love Team Aiden!

Wednesday, September 28, 2011 7:42 PM CDT

On your marks.. get set.. GO!

Yes ladies and gentlemen it is that time of the year, time for: The rat race. Me = hamster running in my wheel. I feel like I am constantly saying, "hurry or we will be late to...." fill in the blank.

This past weekend was super busy with Mason's 6th birthday! I can't even believe he is 6. It was "all about Mason" just as it should be on his birthday, and he loved every second of the attention. It is hard to imagine he is 6 since he just seems so petite and young to me. I still see my little baby. I remember how he would crawl around on his little knees for years. It was always just 'baby Mason'. Now he is a big boy, working so hard with his school work, reading, writing. It is amazing to see him grow leaps and bounds socially and developmentally. I am so proud of him.

Here is Mason drawing and making math problems and just playing while Mommy made his birthday cupcakes. He was so cute making his masterpieces.

Here is Mason with our new adopted Greyhound Oreo and a cupcake. (story for another time.. but isn't he cute!?)

And this when we watched a movie and had Mason's favorite dinner at home on his birthday night. Yes, those boys love their daddy.

I can't help but post some photos of Mason when he was younger, because well.. he was just SOOOO cute and I want to just go back and kiss those baby cheeks. So here are a few of my favorites over the years:

Oh I just loved him as a baby.

If you can think of one word to describe Mason it would hands down be, "sweet". He is the sweetest child. Has been his entire 6 years.

You know I have never been a mother to a child who didn't have some medical issues, needs for hospitals, testing, therapy. But even with the terrifying times we endurred with Mason and all of his neurologic problems, I always think back to when he was a baby and how much insight he brought to me as a mother.

I remember the day he was 6 weeks old. He was still wearing premie outfits. His tiny little body just melted in my arms. I remember when that age came because it was the same age as Aiden was when he had his first major surgery and when they told me, he had Biliary Atresia. Years later holding little Mason it dawned on me not only how blessed I was but infact when I had missed out on and what my sweet baby Aiden had been through.

I wrote a poem the day Mason turned 6 weeks and 3 days old. It is sort of sad, (hey I was hormonal) but it was also tribute to how beautiful they BOTH were and how Mason was my gift to teach me something I never got to learn with Aiden.

This was my letter TO AIDEN... inspired by my sweet baby Mason.

written November 4th, 2005:

6 weeks old

Looking at Baby Brother
I discover a hidden secret.
So small and helpless,
Can�t even hold his head up yet.

What was I doing,
When you were this young age?
Was it watching you coo?
Or Making you safe?

I think back with sadness,
I feel I CAN do that now,
You got ripped off my little one,
I see we both missed out.

I count biopsies, and needles,
Parents who were not there.
We were busy crying and grieving
Things we just could not bear.

Behind a hospital mask
They say your name.
�Just a minute more?� I ask.
�It�s time to go�, they say.

How do I hand you over
To someone I don�t know?
This wasn�t in the parenting books!!
I just can�t let you go.

Hours go by and they tell us the news
The worst they feared was now our truth.

I have learned a new emotion.
I feel something for the first time, it is hatred.
It wasn�t for a person; it was to a thing.
A disease called Biliary Atresia, I hated that name.

Aiden, you are loud and laughing as I write this.
You are full of life and God�s Grace.
In the past three years,
I learned another new emotion
Some call it acceptance,
But I call it FAITH.

Thank you, Mason, Baby Brother
I didn�t know until today.
You showed me a secret,
What I should have been doing that day.

Mason is just 6 weeks old,
just like you were
He has no scars,
He has no pain.

I am sorry my Big Boy
You ever had that day.
Thank you God for showing me though,
Just how it SHOULD be at this age.

~~Love Mommy

Today at 6 YEARS old... Mason has just been a complete joy. He has brought us so much laughter and taught me so much about how LITTLE I know about parenting. He is sooo different than Aiden. Mason has a flare for the dramatics, a dreamer, an artist, a gentle quiet soul. Besides the dramatic part.. him and I aren't very much alike, and I love it! He has so unique and sweet and tender. He has so many layers to his personality and the way he thinks, he suprises me every day.

I adore that little boy and can't wait to see what he will be like next year at 7. Happy Birthday my little angel. I love you to the moon and back!

**** please do me a favor and take a moment to let Cheryl know you are thinking of her. This Saturday will be 6 years since Haley flew to Heaven. I can't ever think about Mason's birth with out thinking of my dear friend's loss. She doesn't update her caringbridge page anymore, but if you haven't heard the amazing story of Haley Vincent, please visit and just sign the guestbook. If you are facebook friends with her, send her a note.

When someone loses a child, sometimes the most painful thing is when everyone else moves on, and forgets. I will never forget Haley, as I know many many of you won't either.

Her link:

www.caringbridge.org/ga/haley

Thank you

Lisa

Monday, September 12, 2011 2:53 PM CDT

Oh my goodness.. I thought I updated sooner than this. What a drag to read the previous update. Thankfully I am completely submerged into school and the boys activities that I am out of THAT funk. I really think the whole cinci/tennessee trip sort of did me in, a tad. I am feeling much better and have gained a better attitude about everything. It is what it is. And as one of my friends reminded me, what it is is: "Sucky!" (except that isn't what she said, I edited to remain at a G rating. wink wink)

So school is fully in session. I think it has gone very very well. Aiden had a bad week last week. Of course it coincided with the tropical storm, and weather change. I know that sounds crazy, but when your child's doctor says, "I went outside today, looked at the weather, and thought, I bet Aiden is having a bad day", you feel less crazy saying in print.

Aiden looooves school. I love that he loves school. I love that to him bells ringing, pledges of alliegence, school spirit, eating lunch with friends, taking tests... all of it is still fresh and new for him. I think those few years not being healthy enough to attend school, really shaped his view on being IN a classroom. He really just loves it.

Mason is really loving the parts of school I never expected him to love. He loves PE. He has made a few "school best friends" already and I am thrilled. He has walked off to Kindergarten confident and happy every single day. He has totally impressed me. He is ready to write more, but I have had to remind him that it will come. This week I get to volunteer in his class, and I can't wait! I would really like to just scoop him up, hold him like a baby and hug him for hours.. but this is "big boy" school. You just hug with your feet on the ground.

Tonight we have baseball practice, I have a PTA meeting, and Mason just back from piano lessons. HEllloooo can we say, "NORMAL?" The only medical parts to the day was an email from his endocrinologist. The email she wrote me consisted of one word. "sure". It was a reply to an email I had written to her. I wrote paragraph after paragraph discussing a change of one of his medications his other doctors wanted to do.. and after my dissertation and full detailed explaination, I got in reply, "sure". I laughed out loud. classic.

SO...This week I am taking some mature steps toward better planning. Some of you will understand that it is so hard when things are going well for the week to even spend one split second of our day thinking or speaking of illness. I think that is why I am so sporadic here on his page. Full of thoughts and words when he is very sick, and running from it while he is well. I know it is always looming, so why spend any time thinking about it unless I have to. But alas, I also know that has gotten us in trouble.

Other moms of chronically ill kids would shake their finger at me, I am constantly in denial and have never made up even a piece of paper with a list of Aiden's meds or life threatening allergies. I don't have any medical plan or history recorded, and I realize now after our lovely visit to ER from Hell, that it would benefit Aiden to have it all printed out and even including a letter from his doctor explaining good emergency care.

I have been questioned by dozens of nurses, year after year, when we are in the ER and they say, "Don't you have a list of meds and allergies? At least a basic list of his surgical and medial treatments?!" and I always sheepishly reply, "umm no." I just keep it all in my head.

I have had logical reasoning behind it all.

1) If I write it all down, then I am admitting there will be a "next" admittance.

(this is usually where people look at me like I am certifiable)

2) I don't want to be "that" mom they all think are crazy. You know the one with the binders and binders of every moment they pooped and peed recorded. No disrespect if anyone reading this has that.. I just can't. It may feel like it gives you control over your kid's symptoms, but in reality they don't care. The doctors are going to order it themselves, record the data themselves. They will ignore your binders. (ok yes I had a binder pre-transplant, I have learned from experience)

3)Where do I keep such paper work? In my car? In my purse? I mean, what a downer. Reach in my purse to pull out a lipstick and grab the medical affidavit with the correct mixture of potassium in his saline bolus. (waah wahh wahhhhhhh - Debbie downer).

But... even with that rationale and more deeper rooted denial, I am doing it. I am making a real list of medications and having his doctor write an 'emergency plan' so we have it where ever we are. I am going to do something this week that is so against my nature, I am preparing for the worst. Ack! I don't mean "THE worst"... just semi-worst or just sort of bad.. or just kind of mediocre? See? I can't even type it out! I am too optimistic (denial).

Yep that is the plan this week... better planning for things that may come.

Why am I telling you? I mean, in the time it has taken me to explain why I never do such things, I could have done my med list 5x. But I am telling you (my journal) because it is a big step for me. It is all a part of this new 'acceptance' I am working on. I need prayer for this. It is hard. I hate to dabble my foot in reality, because I am afraid I will get sucked in and lose these hopes I have. I know that seems irrational, so I am sharing it here. Is there other medical moms like me? I sure hope so. I often wonder if I am the only one who just CAN'T write down the med list. The way the nurses/doctors look at me when I say, "No I don't like to write it down", always make me feel a tad crazy and different. So I am sharing it here. It seem so small and insignificant. I mean, obviously he will go back to the hospital .. obviously this isn't over by a long shot, but for some reason, preparing for the next admittance feels a little like defeat, not preperation.

Anyway, while I struggle with typing out 11 medications, you can say a prayer that we will never need to turn it in. Also please pray for me, and that I can have peace with this new leaf I am trying to turn... acceptance.

It has only taken 9 1/2 years... but I'm getting there.

Lisa

Tuesday, August 30, 2011 1:59 PM CDT

note to the 4th graders in journal history...

back to reality here on the page, viewer discretion advised ;) wink wink.

Ok so the 'fun' version of Aiden's disease is now back into the journal history. But if I do say so myself, I did a good job not freaking out the kids. Good news? They kids weren't freaked out to begin with. Infact, they are all so level headed and cool. It isn't usually kids who care about Aiden's disease and differences, but instead it is adults.

I will say, we are certianly blessed to live in this very supportive community. Baseball actually begins next week. Sounds absolutly ridiculous that we are yet again doing little league for a child who played in only 1 game a whole season, but if I have to pay for him to be a 'part of something' THAT wonderful we will GLADLY do it. Our Northeast Little League is honestly one of the best things that has happened to Aiden. I love it and wish I could capture that spirit of humanity and duplicate it for the rest of his life. LOVE it. This season, I think he will be really learning how to do more pitch counts, and managing. That way when he comes with IV attached he has a job. (of course I am also hoping he swings that bat and gets a lick off of one of those giants he plays against. I love it when he does bring the runner home, even if he can't get on 1st. The kids cheer and yell)

So ok, the reason I am here updating. So Aiden had the MRI of his brain today. I mentioned previous to the "vacation" drama posts, that they wanted to look for a tumor on the pituitary. The likelyhood of that was MINISCULE.. but none the less the doctors said they really needed it to (and I quote) " complete the work-up".

So now it is completed, the results were in immediatly, and were normal. No tumor. Not sure what I expected, but when the nurse told me I was thinking, "OK.. yay, umm.. great! right?!?" Sounds sort of munchousin-ish but after chatting with endocrine in Cincy we were sort of hoping we could actually SEE something that could be removed or handled. That is ok.. Honestly I couldn't even handle that. A brain tumor on top of all of the other stuff.. on top of Mason's 2 cysts in his brain? I think I would be officially need a long vacation in a special quiet place, if you know what I mean.

I am of course thrilled that my child has no tumor and then thought immediatly of all of my friends whose children weren't so lucky. Thinking of Ryan at the moment, whose mother I adore and love, and I hope is reading this so she knows I think of her often.

It all just is so hard.

Don't let anyone ever tell you that there is one worse disease in children than another.. it all just sucks. Any and all suffering whether it has a fancy name no one can pronouce or a name everyone has heard of. Children suffering just sucks in all packages.

The MRI went smoothly except for the few moments before when they took him to go under his anesthesia.. ripping at my clothes and wrapping his arms around me screaming, not exactly what every mother dreams of doing before her first cup of coffee, but I also am experienced enough with my child that reasoning with him in that state of panic does nothing but escalate his fears. It was time, take him and get him asleep as fast as possible.

I sat in the waiting room with this absolutly precious 17 month old little boy that has food aversions and gags sometimes when he eats. I told her all about Mason and feeding therapy and how successful early intervention was. She was very happy to hear my experience. Of course the whole time those little tiny feet danced to the wiggles and ran from his mommy playing peek a boo, I just thought of Aiden at that age. I couldn't help but just see Aiden in him. I kept thinking "oh I am totally one of those moms that say, 'enjoy it now, it goes by quick'" But that was all I could think of. It goes by so quickly.

Peep peep of Thomas came on the TV and I just watched the little boy mesmorized at the trains. I wanted to just time warp back to those days where we sat and made elaborate train tracks, and lined up all of our train friends reciting their names and numbers. I ache for that little boy because I want so badly to protect him from what is coming. This awful dysautonomia. I hate it with a passion. I am furious that it consumes our lives.

I remember when Aiden was a little boy and he would work all day on those tracks. He'd set them up all over the living room, winding from the bedroom. We'd tip toe all around the house like a wooden obstacle course. Peep peep! Off to the Island of Sodor. It seemed easier then. When you are only 2 you don't really have a grasp on what is yet to come, and what was behind you. Things in the moment are enough to catch your attention. But now, it is all different.

"Don't bother bringing my Dsi, it won't distract me. Lets just get this over with" he says today at 9 years old.

In the waiting room, the mom of the little boy asked me if my child with the eating issues was having a test, I said, "No, It was my other son".

It is funny because I often don't EVER talk to people in the waiting area but her and I talked. I usually feel like I will freak out the tonsilectomies parents. I love their blissful ignorance. I don't ever want their bubble popped, and selfishly I really hate to see the expressions on their faces when I answer the question they always ask me, "What is he here for?"

"He had a liver transplant as a tiny baby. Now he has something wrong that makes his whole body not work right, so they are double checking his brain for any obvious abnormalities."

Shock, horror.. then it moves to guilt. She thought it was the worst.. her son not wanting to eat his chicken nuggets, and now she feels bad.

I don't want that. To her, It IS the worst. It is ok to be sad your child is struggling, it is ok to not have THE WORST OF WORSTS and yet still be sad for them. I struggle with that myself. Having so many friends who would do ANYTHING to have their child back, whom they lost fighting brave fights. I know how very blessed I am, but I also know I have every right to be sad, angry, and dissapointed in some of the things Aiden has had to endure for NINE years.

So we chatted more, I moved off the topic quickly and went back to enjoying the little toddler and how determined he was to climb over the little chairs.

Back to the test.. being normal of course is wonderful. Aiden has dysautonomia, and I know it. I am done trying to rename it. Done trying to say it still might be something else, something more defined, something with a treatment. I am done with all of that.

I can't say I have lost my faith that this will get better, but instead I am completely chalk out of hope that this is just a misdiagnosis and a better more treatable disease is lurking around the corner. This is it. Our beast. Our ugly stupid beast we have been fighting since Nov 2005. I accept it. It took me 6 years, but now I am done fighting what it really is.

Sitting in recovery, Aiden's heart rate was bradying as usual, and his blood pressure was sky high. Joey said, "that can't be right." I looked at him with amazement. OF COURSE it is right. It's Aiden. I was so mad. I just wanted to say, "WHY DO WE USE THE MONITORS??" They just alarm all day, all night. He makes no logical sense. Last week we battled dangerously low blood pressure, fainting and lightheadedness. This week he is ASLEEP and his blood pressure is 148/100. sounds about right to me.

But this too shall pass. It shall pass tomorrow, when I am taking both of my miracle boys to school. Volunteering in their classrooms, watching them be normal and typical. I will never get stuck in these feelings of despair because I live by the Scarlett O'Hara theory of life... tomorrow is another day.

So with that said, if you are a mom. GO HUG THOSE kids. If they aren't home and they are grown, then go hug yourself.. because I bet you have also had your own share of parental heartaches and triumphs.

Tomorrow is another day... another day with out a tumor on his pituitary, and that is a good thing.

~L

Thursday, August 25, 2011 12:05 AM CDT

Today's update will be actually an introduction to Aiden's wonderful 4th grade class. I have directed the parents here if they would like to have any more information on what exactly it is like to be 'Aiden' :)

Dear Mrs Cianca's 4th grade class!

Welcome! You made it to Aiden's page! Aiden has his own little corner of the internet that we keep updated for family and friends who are concerned or caring about what might be going on with Aiden through out the year. Sometimes on this page we talk about things that aren't always appropriate for children, so make sure your parents are always viewing it first or along side of you.

Aiden was born with a rare disease that made him very sick. He was very lucky to have a surgery that helped him get overcome this disease. That surgery was a very long surgery. Aiden has to take medicine every single day, but when is is done with his medication he is just like every other child. He plays baseball for Northeast Little League, he loves pokemon and Harry Potter!

Often time Aiden has to go to the hospital and get IV's. here is what that can look like:

Wait! That is Aiden wearing his baseball shirt, RIDING on an IV pole! He doesn't look that sick does he? Well, that is usually what he looks like when you hear he is "IN the hospital". Sometimes hospitals like All Children's Hospital can just provide a place where he can get special medicine to help him feel even BETTER than before!

Sometimes when he is in the hospital he looks like this:

YEP!! That is Aiden on his birthday, in the hospital. You may recognize one of the children in the video, who is also in your class.

So when you hear, "Aiden can't come to school for a few weeks or days, because he is in the hospial" I want you to not be frightened for him. Sometimes he can feel yucky, but often he is just like you just needing special medicine.

You may see Aiden leave early in the school day and wonder, "When does Aiden do Math, social studies, and science?" You might even think, he is lucky because he gets to go home early. Well, here is what Aiden is doing at home:

Yep, that is Aiden working with his homebound teacher doing all the very same work you are doing. He does the same math, science and social studies books. He even has to do power point presentations and sometimes even harder work than his classmates. Do you know how when you feel icky and stay home from school? Well, when Aiden feels icky.. he DOESN'T stay home from school.. his school comes to him. Sometimes Aiden even has to do school in his hospital bed and room.

The best part about Aiden doing all the same classes and homework? Aiden actually loves that he is just like all the other kids and has an oppertunity to learn. It really is a blessing.

Once you get to know Aiden more, he can answer your questions if you have any. I am so thankful you came to his page and got to learn more about your new friend Aiden. We can't wait to learn more about you!

Thanks for visiting, and come back again if you want! But just make sure you get permission first.

Sincerely,

Mrs Hawk (Aiden's mom)

Friday, August 19, 2011 7:00 AM CDT

Aiden has had very low grade fevers for 2 days now. We have managed to stay out of the hospital. Mainly because they just aren't high enough and because we have cultures brewing at 2 different hospitals. I am thrilled to stay home with a fever. Amazing how 'normal' that feels. If it wasn't for the port, we would almost always stay home but as we know we can't take that for granted. So, this time we just celebrate that we have managed to not go in this week.

Today is a very special day. With all of the trauma and hospital admissions we have had I haven't had any time for preparing for the 1st day of school. This morning, both boys have 'meet the teacher'. Monday is first day of school. I am bursting at the seams for Mason! His first time in the Kindergarten building, meeting his teacher. At 6:30am he was ready and awake this morning, You can't get cuter than that.

Aiden already got to meet his teacher last year at the end of school, but he just can't wait to get back on our school campus and just feel normal/familiar. Even though he isn't a traditional student he loves every second at school.

I love NORMAL. I love this routine. I love our boy's school. I love that I spent last night making posters and signs for the PTA's Boo-Hoo Breakfast. I love all of that.

We found some tiny uniform shorts yesterday for Mason. Oh my word. The cuteness and preciousness of them just can't even be explained. Tiny teeny little crisp navy shorts.. I can't wait to see him with his backpack, going off to Kindergarten. I know I won't be crying because I am sad he is growing up, I very well might shed a tear for Aiden that he never had the chance to attend school normally, but hopefully I can stuff those feelings away and just celebrate Mason in all his wonderful-ness. Yes I know not a real word, but it completely describes my baby.

My camera broke for no reason at all, so I am hoping this weekend I can exchange it and get another one just in time for First day of school on Monday.

I will be updating later. I just wanted to let you know some of the normal wonderful things that are up and coming in the next few days. Pictures to come!!

Keep praying for Aiden, he isn't 100et, physically and emotionally. Pray for him to have a peacefull next few weeks.

Thank you for your support, and prayers

Lisa Hawk

Tuesday, August 16, 2011 10:02 AM CDT

As I wrote on facebook at 2:30 AM:

9 days, 2100 miles, 6 states, 2 emergency hospitalizations, 1 next day air flight, 1 ambulance ride, 6 days admitted, and one psychopath doctor... I am able to say we made it through the vacation from HELL and are HOME.

I am honestly thrilled to put that traumatic update into the journal history, as I haven't had ONE single normal night of sleep, one calm moment when I close my eyes. My ears are still ringing from the "bing bing bing" of the alarms on Aiden's monitors in that ER. Alerting us he was failing and getting worse. I am completely traumatized. I can't imagine what Aiden is thinking.

The day we stablized in the new children's hospital, he laid upstairs in the bed, and quietly turned to me and asked, "Momma, what would happen if they wouldn't get me IV's and medicine fast enough?" I replied, "That wouldn't ever happen." He persisted, "What if it did? What if I never got IV's? What would happen to me?" I gulped down my tears and said to him what any mother would say, "You would feel very sick but you would be fine. You would probably faint, but then you would be just fine. Don't ever worry about that Aiden. It will never happen."

It was a lie. I don't want to think about what the real answer is. But I knew the truth was, I wouldn't let that happen ever. He seemed satisfied and I sat there shaking knowing that I easily could have had to say good bye to him just a few days ago. I remember Cheryl said, "I saw him getting worse and worse and I knew.. if they wouldn't treat him, I WOULD."

I thought also about that time and how when we told our nurse in the ER (who by the way, was doing his very best and was very nice) that we were leaving and to take the line out of him, he did something that now I believe was FOR us. He told us to stay, while he quickly had every single medical note, blood pressure print out, labs, and vital sign in my hand on paper. I honestly (as does Cheryl) believe that he gave us that because he wanted us to have it because he knew it was wrong. I thought it was so strange when he asked us to wait for the paperwork, I was actually thinking he was tricking us and getting the police in there. THAT is how frightened I was.

I am a rule follower, so the AMA thing just was very very hard for me.

Now that I have reviewed the paperwork from that morning, It shows how apon arrival his BP was 115/75 then in the hour it was consistently plumeting below 83/41 ... That was WITH 800 ccs of saline going into his vein at the highest fastest rate.

This is why I can't close my eyes with out blinking back to that moment.

BUT since I am a big believer in metal health being equally as important as physical health, I am fully aware that it is a post traumatic stress response on my behalf. My hands are sweating typing this, and I know what I need to do.

While in therapy in the past (post transplant) I was taught some techiniques on how to deal with a traumatic event. I am being raw and honest here, because I want any other mom or person reading this, who has ever felt this way to know that it is OK to react, but there are ways we need to handle it so we don't get STUCK.

That therapist many years ago suggested to me that I shold begin journaling. She said to write exactly what happened. So thus I opened a caringbridge page. Over the years it has been VERY REAL and unfiltered.

The second step to healing is to REWRITE the outcome.

If in my head I see the trauma and then see the terrible traumatic outcome.. then I MUST rewrite it. Rewrite the reality of it.... not the outcome I feared most, but the real one. So, for my family, for my mental health.. I am going to do just that.

When the nurse took Aiden's IV out of his arm, I signed the AMA papers. Cheryl signed as a witness. Aiden was talking and alert as they had run the fluids, and the solucortef. We knew a bolus wasn't enough for him long term but enough to safetly take him to a children's hospital that specialized in pediatric care.

I walked over to my sweet boy, and I lifted him. Normally it would hurt my back since he is so heavy, but it was like he curled into every part of me. Wrapping his arms around my neck, I easily carried him and left. Cheryl and I walked to the car, I buckled him in the back. I debated where I should sit. Should sit next to him, or would that frighten him? Should I sit up front or is that not close enough. I chose the front seat, as I knew there is no distance that would seperate me from helping him if needed.

We drove which seemed like we crawled there. A was trembling and unable to really form sentences well. Aiden talked and told a few jokes, then would close his eyes obviously still exhausted. When we pulled up to the children's hospital it was beautiful. The lady at the triage in the ER had this precious sing song southern accent. I was shaking and trying to explain that Aiden was stable but had a complicated medical history and our Florida doctor was calling immediatly to advise if needed on his care. I was feeling so scared it would happen again. Her next words were, "Oh honey... Momma knows best, and you are in the right place." I loved her. I wanted to jump over that colorful desk and hug her.

I looked at Cheryl who was now solemn and sad. I knew she was looking around at the bright colors, the kids drawings, all brand new and thinking of her Haley. I sat next to her and began to cry and told her how so sorry I was she had to see any of the things she saw. She said, she wished that place was built when Haley was alive. I felt gutted for her.

Aiden was immediatly well cared for. Every moment from when the nurse talked to him, to when the doctor came in. She was familiar with dysautonomia because of her work with spinal cord injury patients. She was kind and compassionate and spoke to our pediatrician. She was very very concerned because Aiden's Bands (a type of WBC) read at 45.1 when they should NEVER be above 0. I was furious with the scary ER doctor because he had LIED to cinci and said his labs were normal, I tried to let go of my anger while she appropriatly ordered multiple cultures tests and treated him exactly as he needed.

Aiden was admitted, his labs began to improve, as all of his vital signs were now normal once on the floor. This hospital is a sister to St. Jude's Cancer center. They had such a wonderful care in place, I was so releived. He was safe.

Aiden got stronger and stronger and on the last day of our stay was making all the nurses, residents and social worker laugh as he did the 'annoying dance' for them. The clapped and asked for an encore, he did it again. He was in hopes if he was really annoying that they would discharge him sooner.

The trauma of the event although real.. didn't end with my worst fear. I advocated for him. I guess I didn't lie. I would never let him not be treated. Even though I was so afraid.. I did do the right thing.

As I type this, I hear him in my living room playing the Wii. Harry Potter Legos. Laughter is echoing. The boys are together at home. He is ok. He ran past me singing to Biscuit. He is ok. At least he is ok Physically. He has talked many times about the ER doctor yelling at him. He felt like the yelling was AT him. He felt like he did something wrong. I know emotionally Aiden is as raw as me.

The part of rewriting the trauma is that it doesn't take away from the HORRIBLE awful care he recieved... but it ends the story differently. Instead of knowing what COULD of happened... I am ending it with what did. With the help of my friend, and our wonderful advocating doctors on the phone, and then the outstanding care at the chidlren's hospital, we saved Aiden. He is ok. He is home. He is safe now.

This whole update was for me. I needed to write this because I need to be able to stop the frightening alarms in my head and exchange it with the laughter in the living room.

I know a lot of you have said I need to do something regarding the doctor who gave false medical information and yelled, and I want to assure you I will. I am not sure what, but WE WILL. I PROMISE. I just don't want to talk about it anymore on his page, because frankly I can't. It was one of the most traumatic and painful things I have ever endurred, and I can't rehash it over and over.

Somehow I have to find the ability to clean my house, make dinner, grocery shop, school supplies shop, speak to Aiden's teachers about his schedule, get Aiden's line deaccessed today at the hospital, plan the Boo-Hoo Breakfast for the kindergarten families, and be a wife. I can't let that monster ER doctor in my home right now.

So today I leave it here, just like my therapist taught me years ago. I am open and vunerable to all of you reading, and hope you know that I trust you with these feelings.

I am so thankful for you all. The fury and protection you all had for Aiden was exactly my same feelings. Thank you. I felt like a momma Lion with her pack behind her. I can't thank my friend Cheryl enough, or her children, and friends who all stepped in to help.

I have shed so many tears and I know more to come, but now I just wanted to say thank you. He is home. We are all home and we will make it through this too.

God bless you for caring and supporting me. I have needed it beyond belief. Thank you

Lisa

9:57 AM CDT
mondaay update:

I'm leaving the information below because it is part of this visit and so important for people to know what AIDEN went through. Not me, but Aiden. for today's update Aiden is doing very well, off fluids hoping for a discharge so we can go directly back to St. Pete. Aiden just needs to be in his enviroment.

I know we have wonderful and valued medical professionals including doctors that read Aidens page, I never would lump them into the same catagory as the person we saw in the ER of hell. I want people to know I don't think that is normal or ever will occur again. I know that doctors dedicate their lives to patients and practicing well. I don't think he reflects on the medical community.

Ok public service annoucement over.

I don't know if anyone else had thought of the elephant in the room (or is this elephant only hanging out near me) but OBVIOUSLY the vasopressin didn't stop this autonomic crisises. I am partly relieved I didn't spend months hoping and believing it was the cure for him only to be crushed. I have shed tears... but this was the part of the update I posted from cincy's stay that I didn't get into.

They felt that it wouldn't stop this awful disease he has. I didn't want to believe them, but it showed itself true.

I will not accept that we have run out of options for making this end. I just ask you all to pray for Aiden that somehow this little boy can have some normal childhood between all of this.

I just wanted him better... FOR HIM. Not me. I would take this from him somehow. I wish I could.

Anyway- as for today, please pray that he will be safe to go home. As in HOME. God bless.

-------------------------------

Previous update:

Yesterday was a living night mare. Aiden is now in a children's hospital admitted for the second time in a week in a different state. I have to get this on 'paper' what happened. I need to update, although yesterday will be burned in my mind for ever.

We arrived at Cheryls house (angel haley's mom) thursday late night. Aiden and Mason had the most fun ever on Friday. The weather was very cool and they were outside and playing non stop. Aiden looked a little 'off' with the red veiny thing he does, but I tried to ingnore it.

On Saturday morning the morning we were intended to drive to GA, Aiden woke up into a full complete Autonomic crisis. Exactly text book how he has done it in the past. Woke up, sick, wretching, in and out of consiousness and detiortating very quickly. I was so afraid!!! We called 911 and got an ambulance to take him to the the nearest hospital, with the intentions of stablizing him and then air transporting him to Cincinnati childrens. Aiden was in the back of the ambulance, alone with the paramedic, I was only aloud to ride up front and try to comfort him through a little window. I was crying and frightened, and preparing to let a new hospital understand and know what they NEEDED to do to save Aiden from becoming critically ill.

What happened after we arrive honestly will probably be unbelievable to some of you. I can only hope you understand that this was a very real and serious situation and that later we will be taking matters and handleing this with some advocacy group somehow.

I immediatly spoke to the ER doctor he was receptive and began to do what I explained Aiden needed. I got on the phone and paged Cincy as well as spoke directly with Florida doctor Cross. Aiden was not awake. He had no line. The hospital was an adult hospital. I got the number to the ER Cincy called them to speak to the ER doctor about the severity of Aiden's complex diseases and how seriously it needed to be treated. This is when it went very bad.

The doctor came storming into the room FURIOUS with me, and said, "YOU BLIND SIDED ME! You said he should be admitted.. We have pediatricians here. WHY do you think he should be transferred!? You lied to me. You said you wanted him admitted. Now you have all these hospitals calling." He was VISBIBLY angry. I was sort of in shock, I murmered I was sorry for the misunderstanding, I only needed Aiden where he needed to be. He stormed out of the room.

At that point, Aiden was slipping in and out of consiousness. he JUST needed some IV fluids asap or he would become critical. It is deadly. He had NO labs drawn, no IVS running at that point and then Cincy doctor calls me and says, "Lisa, Hi, I spoke to the ER doctor and he said, ' Aiden is alert awake, with IV's running, labs drawn and labs are all normal'"

HE LIED. This doctor gave FALSE MEDICAL INFORMATION TO CINCI. I was speechless on the phone and almost took a photo of Aiden, but was just in shock. I said, "NO! he is unconsious his Blood pressure was dropping and NO IV was in him."

The cincy doctor believed me, as she knows me. From there it became worse and worse. I began to panic. My friend Cheryl was with me, and all i could think about was this was the place her sweet daughter died at. The place they begged for them to listen to her. The place they wanted SOO badly to get a transfer from, and now we were living it with Aiden.

A line was finally placed after missing on the port, Aiden never moved or complained. he was vomitting small amounts of blood as well and getting worse.

Once the line was in, our florida doctor was now VERY involved, she told him (the nurse) what to do over the phone. They ran a 800 cc bolus at full rate into Aiden's body. his blood pressure now was only reading 84/49. It was so scary. She called the ER spoke to this ER doctor tried to explain the severity of Aiden's disease and that is when things turned very frightening.

This doctor (and there were witnesses) came barging into Aiden's room. YELLING at us. Poor Aiden laying in the bed so sick, suffering, and he was screaming at us. SCREAMING. I had to tell him, "PLEASE!! PLEASE STOP YELLING IN FRONT OF THE CHILD!!!" he was very agressive and said that there was "NO MEDICAL REASON for Aiden to have treatment. he then proceeded to tell me that he spoke to cincy's attending doctors and medical flight and CANCELLED all transport as he told them ALL Aiden's labs and vitals were normal. HE LIED.

I have no idea why he was taking the transfer so personally but he kept yelling at how HE could have gotten pediatricians to see Aiden how HE could have handled it. I was trying sooo hard to remain calm. I was shaking and desperate.

Once I BEGGED him to stop yelling in front of Aiden, he stormed out of the room. And we never saw him again. Cheryl who is a CCU nurse working at one of the largest hospitals in Florida for years, and then being haley's mom, and now nursing again, knew Aiden was in danger and we needed to leave.

i called Dr. Cross.. she said, "Lisa leave. Take Aiden out of there now. Get him to another hospital now."

Cheryl went back to the station calmly asked for them to remove Aiden's IV and that we would be leaving since they ER doctor felt Aiden needed "NO MEDICAL ATTENTION". (I still get choked up thinking he said that). Sweet Aiden begged us not to take the IV out. A giant adult needle in his arm and they already poked him, frightened him, but we had to do it for his good.

They made me sign AMA. *(again, in shock I had to do this) We did so, and I was soooooo scared I was shaking. i kept thinking CPS or some awful thing was going to get us. I just wanted Aiden to live and to be ok.

We drove immediatly to a children's hospital 30 minutes away. Aiden had had the 800 ccs of IV fluids he was stable in the car. They gave us ALL of the medical records from the bad ER and i read them in the car. The doctor called me "irate" and said we left with normal labs but not finished evaluation.

PEOPLE. His labs were horrendous. Aiden's labs were so horrible. Once in the children's hospital they immediatly were incrediable. compassionate, educated and kindly handling everything. From the labs at the hospital that the doctor LIED and told Cinci Aiden was normal at.. a type of White blood cell was so high it indicated bacterial or fungal blood infection. A serious sepsis.

Aiden was stablized, redrawn labs, cultures, and cared well for. Aiden is now doing better. Although we are all traumatized. I am furious and hurt and MOSTLY SCARED there are medical professional that can practice in such an emiotionally unstable way. The facial expressions from the other staff present was in horror.

I have never ever been AMA. or non conpliant. I have NEVER had any run in with ANY doctor. EVER. I have our pediatrician's cell phone, I have emails, I sat as a co chair on our hospitals family advisory council, I have gone to DC and represented the NAtional Children's hospitals at CONGRESS. I have never felt so helpless and frightened.

As cheryl drove us bravely from the hospital that her daughter died at, and took us to a hosiptal that wasn't built at the time she died. A children's hospital... I sat and wished I could turn back time and be there when Haley was so sick, and drive her out of there too.

I wish to God it went differntly. I wish to God that this never happened. My sweet Aiden is so upset and has suffered enough.

And that is all I can update for now. I just had to share what happened.

I can't do anything about it today. We HAVE to move past our anger today. I am with my children and still with a sick child in the hospital. I can't focus on this anymore. I will though handle it with the help of our local doctors later.

Aiden is stable and Joey has justy landed from a plane trip to come help. He is here, I miss him and need him. GOD BLESS all of the Vincent family, Cheryl and the kids. You were our rock. Thank you.

Medical update to follow once I speak to doctors. But know, he is now in safe hands and is doing better.

Wednesday, August 10, 2011 3:39 PM CDT

Getting discharged! Getting back on the road, staying at cheryl's tonight will update when we are settled. Thank you for praying!

This will be a bad memory very soon!

God is good all the time, even on the bad days. :)

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

Where do I begin? We are in Ohio doing our annual transplant clinic appiontment.. then things sort of veered off into a different direction.

Aiden was admitted to Cincinnati Children's. After a fun start to the week, Aiden woke up the next day with a raging fever. It has been really insane since that moment. He was admitted on sepsis 'watch' because his temp reached 103 at one point. It was a fightening 12 hours trying to figure out what to do with Mason, myself, Aiden, and the possible chance of flying Joey up to the hospital here simply to pick up Mason and fly him home. We weren't sure how serious Aiden's situation was so it was a hard decision.

I wanted to make the decision of Joey coming up today when the doctors rounded, but instead we were swept off at 8AM to ultrasound and testings. Mason was sleeping at a local friend's house, Susan a fellow 'liver mom' (shudder typing that as cliche as it sounds). The day was really crazy. My phone barely works ANYWHERE In the hospital. Most certianly it doesn't work in my room or in radiology where we have been all day. So I have yet to even talk to joey other than to say, "Aiden is feeling better we will be ok with out you".

This stay is one of those things that probably had a purpose. I am overwhelmed by the attention he is getting regarding the new diagnosis of Central DI and the lack of Adrenal function he has. It was made official after spending 45 minutes in deep conversation with the endocrinologist here, that yes Aiden DOES have Central DI.

We have learned so much, and there is sooo much yet to learn. I am overwhelemed with thoughts and emotions. So here is what I can tell you right now.

1) I am watching 2 boys in the family library at the hospital while typing this, so I am feeling very disorganized in my thoughts

2) If you are confused then, please do not feel alone, This all has been confusing.

Aiden has Central Diabetes inspidus. It is a problem with his pituatary. He doesn't fit it text book. I have learned today infact Aiden has all the symptoms but not all the labs for this. It doesn't matter.. he has it. He 100as Central DI. He needs Desmopressin or vasopressin to concentrate the fluid in his body. The spray in his nostrils work very very well, not perfectly, but very well. He has a very low level of a hormone that his brain should be making called ADH. Antidiaretic hormone. It is like the opposite of lasix. So his symptoms are like he takes lasix every day. Lasix is a diaretic.

(ok let me interject I am sorry for the poor spelling and grammer. I mean not really SORRY, but I am just noting I recognize it is there, but refer to the #1 comment above.. I am doing my best)

So Aiden has this disease. Today, I have found out a lot of very upsetting, sad, happy, hopeful, things. The main thing is that: Aiden still has dysautonomia.

This does not replace this diagnosis. BUT they believe it will help him when he tanks, when he suddenly gets critical. This may even hopefully, cut back on his hospital stays. This may even make his quality of life better.

Aiden's body doesn't work properly. It is actually a sad thing. It is really heartbreaking. We may never really know why. When he is dehydrated he is supposed to have a fast heart rate... but Aiden has a slow heart rate. When Aiden is supposed to have low blood pressure his is high. His sugars don't react right, some of his hormones are showing up almost non exisitant. Growth hormone, cortisol, ADH, and others. He has problems with his kidneys, and obviously with his gut/ GI tract. It is all still there. And it is sad. We don't know why. We don't even understand it. And I just have to accept that over and over and over again. And each time I fight it.. I have to accept it again.

BUT... he does have this one debilitating symptom that we did figure out. His fluid issues.

Aiden has Central DI. And now we have a medication to help.
Aiden will be getting an MRI of his pituatary soon to see if he has a defect, or a tumor or something. But a lot of the cases go unknown.

There is so much overwhelming information, I just honestly can't go there yet, until I have processed it.

As far as this emergency admission Aiden is feeling better. The past 24 hours have been very difficult, but hopefully tomorrow I can drive my children back home. Find some form of normal and fun as we head back to the house.

I am SO tired, and emotionally whipped I don't want to say too much. But I do very much want to thank everyone who has offered to get buddy passes, who have offered to help us in this emergency visit. For the emails and prayers. FOr the texts from my dear friends who I often ignore the most because they understand. I just don't know how I could do it with out knowing how many are praying for us.

I am never giving up that we will have Aiden healthy. Aiden's liver doctor here said, "It looks like we have finally come full circle on something". It is a time to celebrate, not a time to cry over the other things still broken. We have had a victory at Team Aiden, and I want to celebrate it and give Glory to God.

I know when I have slept well, and have wrapped my arms around Joey's neck and feel safe at home, I will be able to verbalize my feelings better. But until then... Thank you for just caring about Aiden. You all are a special bunch.. and we are very grateful.

If all cultures come back negative he will be discharged from the hospital tomorrow. I want to say a very special thank you to the Pickett girls for not only being there for Mason at the drop of the hat, but for totally understanding our journey first hand.

I'll update a quick one tomorrow once discharged. Praying we stay stable and ok.

God bless!
Lisa

Friday, August 5, 2011 6:47 PM CDT

It is Friday we are enjoying a few days at the beach. It is so strange what is going on. I feel like we are in some dream. Aiden has been taking the vasopressing 2 puffs 2x a day and it is working. Aiden has a myriad of medical problems but the MOST debilitating is the fluid issues. Months and weeks on IV fluids from home because for whatever reason his body won't stay hydrated. They said his kidneys just work over time dumping fluid all day and night causing him extreem thirst. In sever cases (commonly) he wakes up screams out for a drink then passes outor begins a very severe cyclic vomitting. We have learned over time to call it a "crisis".

This is Aiden years and years. He can't sweat he can't cool, he can't keep fluid in his body.

NOW. He is keeping it in. It isn't perfect.. I feel like we are at a very basic understanding of this... but this vasopressing is working. His urine is concentrating... something that even after his water deprevation test in April he couldn't do.

He is still struggling some today.. feels very tired. They want to do an MRI of his brain asap. His pediatrician wants labs asap. And I feel sort of scared and out of control. Not normal for me. I am usually the one who knows best... but now I'm feeling helpless and new. I don't like that. Plain and simple.

I just feeling like all these years I have asked you to all BELIEVE... it is finally happening. For real this time. It may never be the fix for everything.. but it is HOPE x 1000. I need support with all of this. I am a churning knot of nerves, so scared to believe this is happening.

Specific prayer requests:

Pray he is safe on this medication. Pray it continues to work. Pray the doctors have a better understanding of him and can communicate that to me. And just remember to praise God for this wonderful advancement.

Typing from my cell phone as he rests in the hotel room.. I just look at him and see so many possibilites. Please Lord, let this be it.

Love and thankfulness,
Lisa
Team Aiden!

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

Wednesday update..

We think it might have worked. We think it really MIGHT have worked!! We did two more puffs this morning.. now we wait. He has barely been interested in drinking or peeing (sorry this is part of the disease, gotta talk potty talk). His endocrinologist thinks if he actually needs twice daily doses of 2 puffs he might be able to compeltely get off the florinef and the blood pressure meds down the road. This is absolultly crazy.

I do not know if he definitly HAS central diabetes insipidus.. but it is actually looking that way.

she asked me to give him 2 more puffs this evening, but to make sure there was a break between doses so that he has adequeate time to drink and urinate. Water intoxication is a dangerous side effect, and this medication is often used in a hospital setting in very ill people.

What kind of people have this diagnosis?
Most common are patients with pituitary tumors, histiocystosis, brain damage from truama or accident and then rarely a genetic predisposition. Aiden would probably fall under the brian "damage' part as a toxicity from prograf.. but he would need and MRI of his brain to rule out any pituitary tumor or other defect.

SOoooo at this point we are taking one day at a time. I can't believe the level of energy he has been feeling. Just swam at the neighbors, running on the sidewalks, screaming fun in his room.. no sick, no ickies, no nausia so far! Heck, no zofran today! WOW.

I am just in shock. Shock shock shock.

I emailed Dr. Schulman (endocrine) and said, "Thank you for thinking about this, and trying this nasal even though the pill form didn't work. We are indebted to you."

Tomorrow we so happen to go to the beach (9 miles down the road). Aiden won a contest and they gave him a 2 night stay at a beach hotel here and we are doing a family trip. Something we could never normally do, and thankfully is still only 10 minutes from our local hospital. I am sooo excited about all of this vasopressin stuff, that I haven't even packed.

After all of that "Believing"... I can't even believe what is going on.

Smiling from ear to ear... holding on still before we get too crazy excited, but smiling ear to ear.

Lisa

Update coming tomorrow.. hopefully poolside.

ALSO:
PLEASE pray for Emerson go to

www.cotaforemersonw.com

we love you Erika and family xo

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

Tuesday AM: update

(if you didn't read the update below, start there... or this mini update won't make any sense)

The drug trial failed. I am sad, the second he walked out of the room this morning, tears just sprung out of my eyes. I didn't expect to feel this way. I had no idea how much stock I put into this. I think the hours of anticipation just got me.. I woke up at 2:43 AM stared at the cable box, trying to count how many hours before he woke up. I resisted the temptation to check on him, to wake him early this morning. But I am glad I did, he would have known I was thinking about the meds and that wouldn't be fair to him.

He simply said to me, "Nothing ever works Momma" and took his soaked blankets to the laundry room.

Tonight we do 2 puffs, needless to say, I am not nearly as excited or nervous. I don't think it will help.

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

Memory Monday was a phenominal success and as usual my plans were overted due to the reality that is: waiting on results from doctors. I had PLANNED to update you on thursday promptly after Aiden's long awaited endocrine appointment. It was however, best for me to wait because I wanted to avoid the 'cliffhanger effect' over the weekend.

But here it is, a new Monday, no memory will be included (ok maybe a memory Monday photo at the end ;0) And just some exciting, nerve wracking, scary, frusterating, hopeful plan. And I mean like plan for TONIGHT, but let me get to the good news first

After 6 months, Aiden grew nearly 2 inches!! so that means to my little 9 year old boy that 6 months worth of shots, (aprox 180 needles in his arm that he injected HIMSELF) were worth it. YAY!

We are thinking most of that growth happened in the past 2 months when we got of the prednisone and switched to hydrocortisone. We are thrilled!

The other news came today. So, let me refresh your memory. A few months ago we excitedly exclaimed that Aiden had a definite diagnosis of NEPHROGENIC diabetes insipidus. YAY. then 3 weeks later, they take it back. Boo. Then they do more labs and decide he actually has CENTRAL diabetes insipidus.. Yay? then.. well take it back. So.. thursday we met with the endocrinologist, who so happens to be the expert in CDI (central diabetes insipidus) to discuss what SHE thought about all the conflicting lab work. Some labs say he has the kidney version.. some say the brain version.. and then we all just settled on it is the Aiden version.

So back to what happened this thursday: SO I am wincing, asking her, "So umm what did you and the kidney doctor (perfect hair) speak about this diabetes insipidus situation??" still wincing, not really wanting to talk about this.

She says: "What? Oh. Yeah. That."

Me: "well, what do you think? I mean umm isn't this just riduclous? I mean, don't you think that this is just his dysautonomia confusing everyone?"

Her: "Well, Aiden likes to do things differently. Has he had an MRI of his brain? Do you remember what his ADH level was when they did the water deprevation test?"

me: "I am SURE he has had an MRI of his brain. Heck I bet he has had one of his pinkie toe.." inapropriatly joking, now looking even crazier to her.

her, not waiting for my real answer: "OK let me think about it. Let me just think about it and get back with you."

Me dumbfounded: "Oh. yeah. Sure, yeah.. call me?" feeling as if we would never utter another word on the topic, I gathered up my kids, bags, DSi's, papers, scripts, and appointment slips.. tucked my tail and ran.

SOooooo... to my suprise, today my phone rings, and it was the doctor. She must have thought about it. wow.

So she researched his MRI brain results and came to find out, I was indeed wrong (this is a rare occurance people!) and he never had an MRI of the brain. She also looked into the water deprevation testing, his ADH levels and thought it was all very confusing as the kidney doctor did. She asked specifically about the time Aiden went on a trial for vasopressin (hey look this IS memory Monday after all!).

Insert memory: About 3 years ago Dr. Grubb, Aiden's fancy dysautonomia doctor suggested Aiden go on vasopressin to see if it stops or helps his fluid loss symptoms. *the main symptom of Aiden's dysautonomia* we were SOOO excited (as we have been many other times and then crushed) that this was the thing to help Aiden. It all fit! Maybe he had Central Diabetes insipidus!... we did the vasopressin, and nada. Nothing. Didn't make one lick of a difference. And if that is the result then the DON'T have Central DI. They just don't. SO fast forward for the past several years when he is in a crisis we always say, "it is LIKE he has Central diabetes inspidus and LIKE he has Addison's Disease, but he doesn't" (then comes the strange looks).

So back to today's call. She says to me, "What FORM of the vasopressin did Aiden take?" I reply, "the pill form". She then explains that often the pill doesn't work with patients with other fluid/kidney issues, and she would like to try the more potent form of vasopressin. The nasal spray. TODAY. As in TONIGHT. As in.. new medication, in my home. EEEKS!

So, we talk more and she says things like, 'I doubt it will make ANY difference, but it is good imperical data".

Good imperical data. Yup. we just keep collecting it. One day we will put all that data together, add 2 bucks and get a happy meal.

But of course, this churns the dashed hopes up in Joey and I. Well just in me, Joey thinks it is a total waste of energy. The eternal optimist in me, is always hopeful we will solve the puzzle of sweet little Aiden. One day.

So I already did the spray. 1 spray. one nostril. We are hoping he doesn't lose fluid when he sleeps... (he soaks and soaks and has to be woken up several times through the night to use the bathroom, also then change bedding etc).. IF it does work.. then he has CDI. And I don't know what that means. If it DOESN'T work then.. we do TWO sprays one in each nostril tomorrow night... then I email her.

I have to be honest it is exhausting. I am exhausted and tired of always trying to make it make sense. It never makes sense. It is always going to be rare, or confusing, and difficult. It is sad and hurts my heart that it never ends. That meds change, his life is not typical for his age. It just is exhausting.

So.. pray. As always. Pray that what ever is supposed to happen, happens. pray it is clear and makes some sense, one day, so we can just help him get better.

I PROMISE to update with results tomorrow... and again the next day.

Sincerely and thankfully,

Lisa and my little rule breaker:

Monday, July 18, 2011 1:09 PM CDT

Being that this is the first time I have done this, although have attempted about 4 times, I am excited. I know you can't control your excitement as well, so lets begin this installment of...

MEMORY MONDAY... (using my best annoucer 'voice')

ok it is a short and sweet one. infact it is a memory that really I am sharing for myself. But since I plan on doing this every monday I will start out small.

This was an update I originally written on

Saturday, May 12, 2007 9:08 PM

MONDAY UPDATE:

Today MASON walked.

didn't hear me?

TODAY MASON WALKED!!!!!!!!!!!!!!

During the best PT appointment, with is trunk orthotic (superman vest) and his new ankle orthotics that little boy decided to give me a very happy mothers day present. He took His first steps!

(of course HE HAS NO IDEA HE DID IT!! and won't repeat, but it WILL come.. I just know!)

Next thing you know the lesion on his cerebellum will be gone and the spots of changed myelin will be normal and we will have ourselves a miracle!

I think I am going to write a letter to that nuerosurgeon when Mason is talking and showing his brilliant self and say, "Please never tell a family that their child is most likely will have a low IQ and low cognitive ability.... cause some parent's believe in PRAYER!"

Keep praying! I know this is just gonna get better and better!

I am getting my running shoes on ready to chase around the worlds cutests toddler.... I just can't wait!

Love, Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

When I wrote that update Mason had been in Physical therapy, speech, and Occupational therapy EVERY day of the week, multiple times a day. It was INTENSE. They had already discovered the lesion on his brain, then did another MRI and discovered the white matter part of his brain (myelin) was damaged ( or in their words "changed").

He was 1 year and 8 months old. He was able to move his legs and feet, with a therapist's help, to make a stepping motion.

He was 20 months old.

He was able to make a walking motion while being held, and ONLY while being helped. But still, I cried with joy.

It would be several more months of incrediably hard work, and therapy. Use of orthotics and braces, and he would actually take his very first wobbly steps, completely unassisted. It was a miracle to all of us.

Now that it is a "memory", it makes me grin from ear to ear reading it.

In May of 2007, I didn't know what we would be facing. We hadn't run any of the chromosone studies, we hadn't finished his metabolic tests. All I knew was there was something causing his delay. Something was making his muscles very weak, and his brain to have some abnormalities. I didn't know what I know now, and I look back and think about how brave we had to be.

I remember swallowing down my panic, my fears along side Joey and just fighting forward, like we always have done with Aiden's medical issues. I remember the overwhelming sadness in our home at that time.

This is why I love Memory Monday. I know you are wondering, "You love memory monday so you can read depressing things about your past??" No.. no no. Silly, keep reading...

This says EVERYTHING ABOUT OUR FUTURE!!Why? you ask. Well, because...

He walked!
He ran!
He talked!
He smiled through it all!

THEN he even got ANOTHER second cyst in his brain and yet.....

He rode a bike!
He sang songs!
He jumped with two feet!

He is now getting ready for Kindergarten.

*Contented Sigh*

Sometimes our faith in action, is just us having to HOLD ON. JUST WAIT. HOLD ON some more while that miracle occurs. THEN, just HOLD ON a little while longer... and it is just around the bend.

I have been blessed to see an outcome in Mason that his nuerosurgeon was sure to never happen. AND, I also know, in my heart of hearts, we are going to see an outcome for my Aiden, that no one ever expected. He will be completely better one day. I know it, because we are holding on... and it is just around the bend.

Although the Monday Memory tells the story of one child, it reminds me to keep the faith with another, and I love that.

Mason wearing his orthotic vest, learning how to take steps

In physical therapy working on his neck and tummy strength

getting an EEG to check his brain waves after finding the lesions

More hard work in Physical therapy, wearing his ankle/feet orthotics to help him stand

so darn cute!!!

I love how memories can make you smile, and bring back so many feelings... but mostly I love how if we listen really hard there is a lesson in them. Even the bad times, when we didn't think there could be anything good come from it.

Stay tuned, I will be doing Memory Monday for the rest of the summer. PLus my normal medical updates.

Love,

Lisa

Signing "more" My little Mason.

Friday, July 15, 2011 7:03 AM CDT
Biology 101 (possibly 102)

Well, we are home. Aiden is feeling pretty good. He is on QUADRUPLE the blood pressure medication he was on, taking it twice a day. I am hoping this will help. I did see Dr. Flores while in the hospital and although it was great to get confirmed high blood pressure readings over several days, we discussed the diabetes insipidus and I think officially that won't really 'go' anywhere since the medication that is used to treat it Aiden can NOT have. I asked, 'Is there anything else". he shook his head, "no." Gee ok. I guess that was pretty easy. Dead end huh?

So I am not clear whether or not when we get admitted and go through his medical history (or anytime we see a new physician) do I say he 'has it' or do we say he doesn't? I mean I just really would rather say, "Dysuatonomia" instead of a long list of rare diseases that he can't be treated for. I mean really.. HOW many rare diseases can Aiden have? It is dysautonomia. His pediatrician said, "I am not one to comment on things I don't specialize in, but I strongly believe (as does our transplant center in cinci) that he has sufffered a toxicity to his nervous system and this is all the dysautonomia."

I know. I know.

So anyway, I frankly don't feel like talking about that much more. I am prayerful and feeling actually VERY at peace lately with what we have. Joey and I are trying to put a lot of prayer and focus on what will happen if he has a normal adrenal function. Dr. Scheulman (endocrine) feels very HOPEFUL (love that) that it will balance Aiden's dysautonomia TREMENDOUSLY. I mean it make sense... the more his body parts work on their own.. the more his body works, right? YEPPERS. So we are praying, and focusing on that.

I have done this little visualization of his adrenal gland and realized I wasn't entirely sure where it was, or how it looks. So As I pray over Aiden I was imgaining praying fervently for some random gland somewhere in the abdomen to KICK IN! WAKE UP. So I thought we would have a lesson on Biology 101 today on Aiden's caring bridge. (ok you all just left the page didn't you?)

So for those who are still sticking in there I will begin. Probably the medical friends and family, who are staying just to laugh at how much I botch this mini presentation

Let me begin that I believe for everyone in every situation, understanding is the key to umm.. understanding. You know that whole knowledge = power thing. I'm going with it. I was a biology major for the firt many years of college before I had the rude awakening failing calculus wouldn't get me into Vet school, but this is what I love. So let's begin. :)

**The adrenal glands are named for their location relative to the kidneys. The term "adrenal" comes from ad- (Latin, "near") and renes (Latin, "kidney").

WHOA. that is cool! A little lesson in Latin, aren't you feeling smart today?!

** There are TWO adrenal glands. One on each kidney. Sitting on the top of them.

So this is why we see a kidney doctor along with the endocrine (hormone) doctor. I like learning.

** The adrenal gland puts out hormones through our body: "these water-soluble hormones are major hormones underlying the fight-or-flight response."

Umm.. hmmmm.. sounds familiar. Aiden has no proper fight or flight, hence his "crisises' he has suffered for 5 1/2 years.

** "To carry out its part of this response, the adrenal medulla receives input from the sympathetic nervous system"

OK stop for a moment. So umm.. the fight and flight response is handled by the adrenal gland, and then sends the input to the WHAT??? Sympathetic nervous system. Ohhh, you mean the one that has been diagnosed as the branch of the nervous system that is BROKEN in Aiden? Because he has DYSAUTONOMIA.

Lets look at the definition of dysautonomia really quickly:

**"Dysautonomia is a general term used to describe a breakdown, or failure of the autonomic nervous system. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness and cognitive impairment."

http://www.ndrf.org/ans.html#The Sympathetic Nervous System ( a great link from the national dysautonomia research foundation)

Chewing on this info...

So what other hormones does the adrenal gland spit out?

**"Each adrenal gland has two distinct structures, the adrenal cortex and the medulla, both of which produce hormones. The cortex mainly produces cortisol, aldosterone and androgens, while the medulla chiefly produces epinephrine and norepinephrine."

Epinephrine??? You mean that thing I have had to insert artificially now 25 times via and EPI PEN?? Hmmmmmmmm... interesting. (is my sarcasm getting obvious yet?)

Last but not least, lets review what Aiden's latest cortisol level was when they tested his adrenal gland....

Undetectable.

Completely undetectable.

NO function.

Not a 'little' function, but NONE.

OK so folks, this concludes Biology class 101, area of attention to the adrenal gland and how important of a roll this plays in Aiden's dysauotonomia.

I suspect you all can guess, I had already learned that information recently from our endocrine doctor. Hence why she was very hopeful, and almost excited about what this could mean in Aiden's life if we could get that thing working.

And by the way, I don't mean "if" we can get it working, I mean WHEN. Because it WILL work. It may take up to one year, but we have been off the prednisone for over 4 weeks now, taking only hydrocortisone (another steriod that specifically is made for the adrenal gland). One day we will wean more from that, and wean more and more and more.. It WILL happen.

It feels like to me once we can see ANY cortisol production of his own, we will begin to reaccess just what Aiden's future looks like. So now you can see why 1) we have to let him feel so crummy while weaning him 2) why I am praying fervently, focused and many times a day for those TWO adrenal glands to kick in.

See, this is why we NEVER EVER give up hope.

This concludes our session, I hope to see you here for less class time but more recess. Next monday will be "memory monday".. I already have the memory written, with photos.

God bless,

Tell your friends, your church, whoever, to pray for the cutest little boy's adrenal glands, (which I am assuming are also cute) and we will be forever greatful!

With Love,
Professer Mommy

Monday, July 11, 2011 10:36 AM CDT

(in case you missed my 4th of July update, visit the journal history)

So I am sitting here, just finished having a relaxing facial, a hot stone massage, and waiting for my pedicure to begin. Really this day at the spa has been just lovely! For lunch I will be having a delicious turkey avacado grilled sandwich.....

OK that was my dream.. we are actually sitting in the hospital with Aiden. He was admitted yesterday about 4 AM. He had a fever and we are now watching and waiting on cultures to grow. He has been fever free all this time, but now suddenly he has developed a miniscule 99.6. He is on IV vanquo and got a rescue dose of the hydrocortisone, and tons of zofran. He was feeling really great, but now has hit a little wall.

We had our kidney appointment scheduled today, and now he gets to come to us. Kind of a 'perk', huh? I bet you are all jealous. Just get admitted and you don't have to sit in those uncomfortable waiting room chairs. (please note the sarcasm). Aiden's blood pressure is still totally not managed. I am thrilled to have them taking vitals all the time, because it is recorded and more consistent evidence that he needs more blood pressure medication.

Aiden also needs some prayers because we are going to do a medicine challange today. He has a beef/pork allergy and so often time medications in the pill capsule form are made with gelatin. This paticular medication is ZAntac and our insurance is giving us major grief about all our perscription coverage so this is one less annoying medication to deal with. It potentionally contains some of his allergins. Even the super smartest Pharm MD's can't tell me for SURE though. We have called companies, it is just one of those meds we aren't sure. (gelatin doesn't always have to be beef or pork derived it can be from plants and this is what we are trying to decide.) So His allergist recommended "JUST" admit him and then do a challenge. Epi him if he reacts.Ummm.. that was last year, we haven't had the guts.. but now we are reconsidering since our allergist feels very secure it should be ok.

Anyway, say a prayer that this works out only where we all are comfortable. Or I will just call it off. If we aren't fully educated on the ingrediants then it isn't worth trying. And so that is our little 'adventure' we are having currently.

In other news, Aiden and I are making a Chewbacca with arts and crafts and I am feeling pretty darn proud of this wookie. If he turns out super cute, I will post a photo. :)

Keep praying for our Aiden. This really just stinks and is such a bummer.. but lets face it, he has been in full sepsis 2 times in 12 months, this is worth sitting around for. I love him so much and hate that his life is always uprooted with things that are so abnormal, but also know that we have to continue to keep reminding ourselves that we will get through, that he is dearly loved, and that one day we will find a cure/treatment that will give him a much more stable normal childhood. I will never lose faith.

Thanks for checking in,keep praying, and hug your loved ones. Life is so precious.

Friday, July 8, 2011 7:13 AM CDT

Second verse same as the first. And so on.

Every single, and I mean EVERY single night, Aiden feels miserable. Mornings are difficult and slow, but evenings are excruciating. He sees his kidney specialist on monday, I am hoping he might have some remedy. I spoke yesterday to his pediatrican's office and the word from there is the same.. he HAS to endure it. If we were to give him more hydrocortizone he would feel like a million bucks, but he would never ever wean. His adrenal gland has never (never in 9 years of life) functioned on it's own and now we are trying to wake the sleeping shrivelled gland. PLease wake up. It is the nausia he can't take. The exhaustion, leg pain, stomach pain, headaches, blood pressure, he can take.. but the incurable nausia is too much. Sometimes he will just walk by the bathroom, vomit into the toilette, flush, and continue on with his play. (infact as I am typing this he just vomitted on the front porch)

Unlike my wimpiness.. (or Joey's ULTRA wimpiness,) Aiden handles pain and sickness alone and with out need for wet rags or back rubs. For as long as he remembers, his whole life he has had disease that has made him feel sick. He has learned to self soothe, and THAT slays me.

The other day he walked into the bathroom and vomitted and then before I could come to comfort him, he was brushing his teeth and wiping the tears from his eyes. It was a feeling I couldn't really understand but I felt like I failed. After I come running to hug him, he says, "I'm fine.. I just needed to do that." shrugs it off, grabs a pillow and his Dsi.

It is moments like these, when I feel like we are the most damaged, the most different. I hate it and just can't express the feeling of failure I have whenever he just doesn't need what the normal child needs. He has learned those tools all on his own.

In just a few more weeks we will be seeing Aiden's endocrinologist (and Mason's). It should be interesting, I suppose. I do think we will have some positive word on Aiden's growth. Just the other day we noticed his feet had grown, I can't wait to see what the total is as of now. I know it isn't what they want, but being on the prednisone and on growth hormones just isn't a good idea. Now that the prednisone has been out of his system for about 1 month, I think the GH have had sometime to do their job. (for those who don't know: Prednisone stunts your growth.. hence Aiden is so small)

In other news, (news of the more fun variety), we are indeed having a fun Summer. Lots of sunsets on the beach, BBQ's and swimming with the neighbors. We had our first sleepover the other night and it was wonderfully successful. Almost all of the sleepovers we have had have ended up with a rush to a hospital the morning after. This one I forced the sleep issue and was a mean mommy saying, "if you don't fall asleep then you will have to seperate" (Ohhh the dreaded slumber party threat.) They instantly fell asleep. We have had playdates each day, small bursts of fun, with the rest of the day full of rest.

When school is in session, he pushes through that, and comes home for more school, (hospital homebound), then goes off to basball. It puts him in the hospital a lot more than summer, so the short spurts of play are so much better for him. So much more stable.

Fourth of July was super fun. We have a tradition of doing the fun little fireworks with our neighbors. (secretly I encourage this because our neighbor, a retired elementary school teacher, is much more umm... responsible, trustworthy, etc.. with fire than my darling Joey when alone and left to his own 'devices' and 'ideas') This year we had my brother in Law visiting, with his family.. so the show was 'extra' fancy. ~~we added another redneck to the party so it was just bigger and louder~~ With lawn chairs out, and the kids on the blankets we set off popping, cracking, and glowing delights.

Mason was in all his glory wearing his t shirt on his head "boo-ing" if they weren't spectacular enough for him. The kids had so much fun.

Mason was performing his best "stop.. drop.. and roll" since Daddy was involved in the lighting of the fireworks.

It was a lot of fun.. but the best most hilarious moment was fortunatly caught on a little video. Let me set it up for you. The little flowers, butterflies, and other cute/precious fireworks were finished. (note anything that actually went up in the air is banned in our county, so these are just cute little ones) The kids were all satisfied with this year's level of explosives, but of course a tad dissapointed we had burned through them so quickly. Then suddenly the men-folk located one last 'big one'. I don't think the kids expected how loud and big it would be, but their reaction was HILARIOUS. They scattered like bugs..(note: this was not unsafe, please don't be a cranky pants and tell me we were endangering anyone, try to lighten up peeps)

It made us all laugh, and I just love how Americana (crossed with America's Funniest Videos), it was.

So that is today's installation of this week's update. Check back on monday, I will be doing "Memory Monday" after posting about Aiden's kidney appointment. Memory Monday will be a walk down memory lane, not sure which one I will share, but I am leaning towards one of my best 'picking on Joey' updates. Stay tuned!

Have a great weekend, Hug those kids and keep praying for this young man I love so much.

In HIS grip,
Lisa

Wednesday, June 22, 2011 5:54 AM CDT

Summer is here. And boy is it HERE. Florida summers never dissapoint in the heat and humidity factor. Of course we know heat Aiden = not good.

I haven't updated in such a long time I might be jumping around a bit.

End of school was amazing. Aiden was fortunate enough to attend the last day of school. It was hands down the most fun we have ever had in a school setting. There was a party, T shirt signing, talent show, playground time. Just over the top fun. Aiden's sweet teacher did awards for the class. Each kid won something for one of their positive attributes. I loved how through the entire school year she encouraged the class to give compliments to one another and be kind. That class was sappy sweet and I loved every single minute of it. (amazing what kind of effect a good teacher can have on kids!)

Anyway, some of the little awards were voted in by the kids. Aiden won "Best smile" award. Some won, most helpful, most creative, best at math, etc etc etc. All of them had something super special. I cried while I videotaped knowing if we did only Homebound Aiden would never have a chance to have peers vote him as anything. At the end of the awards, his teacher read out the last one. "Best over all good example student" ... The class voted, and they all shouted out. "AIDEN!!! AIDEN!!!" (I am not exagerating, their little shouts put me into a sobbing mess)

Aiden had won this award for his hard work and effort, for coming to school when he was so sick, and working so hard to catch up. It wasn't a popularity contest. This was about a precious group of children who chose to NOT bully a child who was very different than him. Who chose to NOT tease him, but encourage him. Time after time, when we was sick in the hospital and would come back to school, his friends would give him a standing ovation.

I can easily say we will be missing this class, this wonderful teacher who harbored such a spirit of acceptance. We are so very excited about the upcoming school year, but I will never forget this 3rd grade year. He felt so normal and included in everything.

After school was out I immediatly went into full gear with a fundraiser we were doing for Aiden's medical bills. It was pretty wonderful. Live music, auction, raffles, and lots of caring people who showed up. At one point I began to cry and had to pinch myself because I knew I had the potential to just lose it. Things like that are sooooo hard to do.

The best analogy I have for how it feels to do fundraisers for your sick child is: (it isn't even an analogy it is literal) You know those little cans at 7-11 or gas stations, talking about children who are sick, who are in need. They list one disease, cancer, MD, or maybe it is for your local children's hospital, etc. You throw your spare change in it. Now imagine if you are a mommy, and your baby is on that can or your 3rd grader's face was the face of that need. The face of the disease, this sickness, the sadness all of it. Take my word, it is gut wrenching. No mommy ever expects to have a child who is sick. That is my child. The one who goes on telethons. The one who had a Make a Wish. The one on the can. And maybe if you don't have a child with life threatening illness this all seems too abstract to understand, but I know there are other mom's who have children who are sick, and they are nodding their head and maybe even wiping a tear knowing exactly what I mean, by gut wrenching.

ON THE FLIP SIDE: it is so wonderful when people show they care, give of their time, products, facility, love, etc... People are amazing and one of the things I credit our sanity to. Of course my faith in God and my faith in His plan for our family has pulled me through my darkest moments, but when I see the same beautiful people working their tails off at fundraisers. Or new faces, showing up to say, 'hey I care!!" it means everything. Over the years fundraisers are just a drop in the bucket of how AMAZING people have been to our family. continual prayers and love keep us lifted from a pit of despair.

Over all, Aiden had a blast at the benefit concert, at one point I asked him "How are you feeling. Are you ok?" He replied with his classic reply... "AWESOME!!" It was really a special wonderful event, that I won't ever forget.

SIgh.. OK..

so Summer has started and we sort of figured out what has been happening with Aiden. During this wean from the prednisone, they have been checking his adrenal gland for cortisol levels. They want to find out if his adrenal gland is kicking in on it's own, making up for the drop in artifical cortisol (prednisone). Currently the labs are showing us that his cortisol level is undetectable. He has a severe case of Adrenal insufficency. This can make you not only feel HORRIBLE, weak, nausious, it is also potentially life threatening if he were to 'stress his system' too much. The lack of energy and the incurable nausia is just a constant. He has had a few better days, but his nights are the absolute worst. He is taking Hydrocortisone tablets twice a day, but there is no way he will wean lower than this for a while. It is awful. Any sign of low grade fever, vomitting, he has to be admitted and given a rescue dose of the cortisol. He will be in an Addisonian crisis.

I know people don't really understand what is 'wrong' with Aiden. They know he is sick, but I so appreciate you all hanging in there when I talk 'medical'. This stuff is rare, complicated, and some of the best doctors he sees can't wrap their minds around it. So if this all seems confusing, you are just in a giant club of people who agree with you.

Long story short, Aiden's body still just doesn't function right. Sweating, fluids, kidneys, heart rate, blood pressure (which is STILL HIGH), and more. It is all just not working in the beautiful synchornized balance we all take for granted. And it is invisible to the eye, but it feels just terrible.

SO lets talk some happy stuff.

Did I mention summer was here??? Yes it is so wonderful. I love it all, (except the heat). I love not missing anything with the boys, although I wouldn't mind missing a little bit, ahhh I need a nanny! lol just kidding. I am trying so hard to just savor the moments. It is so hard because when Aiden wakes up sick, my heart plummets into my chest never knowing where the day will take us. But then we work around it. Reading books on the couch, and going to the beach for very short jaunts. It is honestly wonderful to have some freedom to our schedule.

Mason lost his very first tooth. He always had that cute little 5 year old speech thing going on.. but now the lisp, the missing tooth has brought on, is absolulty heavenly!! He sounds soooo cute! I love this stage! I would love to freeze time forever.

This week the boys have their very first VBS ever. Riveira United Methodist Church has gone above and beyond for Aiden. He has had just the time of his life in there. It makes me so happy. Mason of course loves all school settings and has had a blast seeing all his preschool friends.

I hope to do weekly updates this summer. We actually have several very important doctor appointments. One with Kidney to talk about this high blood pressure and the 'diabetes insipudus' and then another a few days later with endocrine to talk about how he isn't really having much growth on the Growth hormone and again the diabetes insipudus. Between the kidney doctor and endocrine (who work in the same office) one of them is going to claim the diabetes insipudus. Is it BRAIN (endocrine) or is it KIDNEY (nephrologist). Who will be the lucky winner?

We are also batting around the idea of going to Vanderbilt to see a specialist in dysautonomia. At this point we feel like there has been no progress given to us that he will get better and frankly Joey and I aren't willing to accept that. I want to hear from someone else that they think we are doing all we can. I will never give up. We love Dr. Grubb, but he has litterally said "it is an unfortunate situation for an unfortunate little boy" in his medical transcripts. He is so compassionate, but I am hearing a little too much sadness in his voice and want someone to not just give up searching for new options.

BIG DEEP BREATH IN... Exhale.

OK. so we have a lot to talk about. Lots to work on, but we are also taking our pediatrician's advice and working through this prednisone wean and giving Aiden some time to stabalize so we can really see how he is doing.

So this summer will have some medical parts to it.. but I am hoping way way more fun and good than the bad.

keep praying for this little warrior. Somedays I can see that mighty spirit he has, is so weak. His friends are passing him up in size, activities, sports, and all they do. It is just hard.

Thank you for checking in, and making it thus far! We love ya'll and request you add Aiden to your prayer lists at church, prayer lists at home, where ever. God has done and will be doing mighty things in this child's life. I can't wait to watch all the miracles unfold.

Lisa

Wednesday, June 1, 2011 5:13 AM CDT

We have found a blood pressure medication that doesn't give Aiden any side effects but his blood pressure isn't really controlled on it. I am going to call today and see if they want to increase the dose. He is on a miniscule amount.

School is almost out for Aiden, he has his 'move up day' on Friday to meet his new 4th grade teacher and class! How exciting for them. I love that they get to have a "about me' packet see which kids will be in their class, and get somewhat familiar with what the next year may hold.

I have to be honest. I am really struggling lately. Aiden has just not been doing well. This year just has been so much worse than last. I don't know what to do. I feel like we have exhausted all the drugs, and options. I am trying to smile and work through it all with him so he can feel ok with all of the limitations, but it is just so hard.

I know he is tired. I know he really needs to just rest, but he WANTS so bad to be a part of it all. He missed so much school this year, months and months of it being in hospitals.. he just wants to finish the school year.

I haven't been updating much because I just kept waiting for something other than a day that wasn't just 'getting by'. He has really good parts of the day then it exhausts him and his blood pressure is high, and he is nausious with headaches. It just hasn't been so great.

I remember when Aiden used to get admitted and then perk up after a few days of fluids and potassium. We always knew he was ready to be discharged because we couldn't get him to stay in the bed, or sit still for longer than 10 minutes. Those bounce back times are gone. Just gone. He doesn't ever bounce back anymore. Just feels 'good enough' and then we go home. Then every day at home it is borderline.

I wish people sometimes would remember to stop, lean down, and ask him.. 'How are you feeling Aiden? I am praying for YOU". People remember to tell me all the time, I want him to know too.

It has been hard. I won't deny it. Raising a little boy who wants SO bad to just be typical. To just have to the energy to run and keep up with his friends, to play out in the summer heat, to be able to swim and not feel like his body is battling every move he makes. He wants so bad to do baseball camps, and have sleep overs at friends. This disease changes all of that. What do you say to your 9 year old, when they sit and pray, "Please God let me sweat so I can play outside." There is nothing to say, other than that I am praying too.

The other day our friends had Aiden over for a playdate. This is something he has only done a few times ever in his life, go to other people's houses with out me.(his annoying shadow) My friend was watching them play in the yard and Aiden was trying to keep up. She leaned down, and told him privatly, "If you are feeling bad at ALL, we will all go in and rest, no one has to know." Right there in the middle of their play, he confessed he needed to go inside. He was pushing through his bad feelings because he just WANTS so bad to not feel bad.

When my friend told me that story, I litterally had to choke back the tears. That was the nicest thing anyone can do for him. Just remind him, it is OK to have limitations and I care about you.

I am trying to gear up for this summer. This wonderful time of freedom, and play, and new experiences and just remind MYSELF.. it is ok to have limitations and I care about ME too.

I am putting on my 'big girl panties' and ready to face summer, and whatever it has in store for us. Praying we somehow can manage him better, but if we don't..that we continue to surround ourselves with people like my friend who stop in the middle of playtime, and ask.. "are you ok?"

Thank you for reading about Aiden, for being one of those people who care. For not giving up hope that we will find a cure for him, or find the right meds to make his life easier. I haven't given up hope.. I am just regrouping.

Stay tuned.. I will be sharing about a Benefit Concert some wonderful friends have offered to have for Aiden in a few weeks. I will post details shortly.

God bless,
The Hawk Family

Monday, May 16, 2011 8:37 AM CDT

This past week, Aiden had some very rough days. Never got to finish out his baseball season. He was heartbroken that he couldn't. He kept going to the games in hopes he could.. but then we would have to take him home with in the first innning. So hard for a 9 year old boy to deal with. After one game we had to rush him to a firestation, for them to read his blood pressure. I felt terrible for Aiden.

Joey of course finished the season swapping back and forth coaching Aiden's AAA team, and then mason's Tball team. This season was so bitter sweet. Mason caught the 'baseball bug'... but Aiden's health was SO obviously worsened from last year that it stung us all.

This saturday Aiden had a scary day. We had to remove the clonidine patch, that they gave him for his blood pressure because like we said (ME, I SAID IT) his heart rate went dangerously too low and his blood pressure wasn't even detectable. He slept the entire day. I mean THE ENTIRE day. He had his uniform on, in hopes to make it to one inning of his last game.. and he couldn't even open his eyes. It was scary but mostly just sad.

We'll get 'em next season.

So we did the clonidine patch for Aiden's high blood pressure, like I mentioned and it wasn't successful. If you look at the definition of dysautonomia.. you will see that it is a disorder that is very complex causing all the symptoms to VERY difficult to treat. For whatever reason, Aiden suffers with this in such a rare and difficult way. We just can't find medicine to treat him, that doesn't hurt him at the same time. I hate it.

Anyway.. I am trying very hard, praying daily that we can as a family take a break from the worry and rollercoasters of this. It isn't like we have a choice, Aiden is sick. But I just need a break. I want a break. I want it to be more normal.

So with that, I am going to focus the rest of this update on Mason. If you have been following Aiden's (and sometimes Mason's page) you know of all the difficulties and struggles Mason has endurred. At just 15 months of age, and unable to crawl or really sit up well.. he had a CT scan of his brain. They found a cyst on his cerebellum. (just above the brain stem- the center of balance of your brain). We had several weeks of gruelling testing. MRI's of his spine, brain, neurosurgeons, genetics, therapy evals.. it was a nightmare. By far more devastating than anything we had endurred as a family. It was like lightening had struck twice in our home.. two children stricken with two challenges. We didn't know how we would survive it.

After finding out that Mason has mild hypotonic cerebal palsy, (instead of having the high tone and stiff joints that you see with most CP children, Mason has a more floppy appearence. His right side is weaker, his core muscles are weak) He had a major 'disturbance' in his growth. Went from 90th percentile to completely no growth and fallen off the charts to below 0 percent. The following year we did another MRI study to see if his cyst had grown in size, and they discovered yet ANOTHER cyst sitting on the other side of the cerebellum. Again, nothing was enough to drain or shunt or do surgery. It became all about his therapy Physical, speech, and Occupational. He couldn't walk until shortly after he was 2 years of age, and that was with 5 days a week physical therapy for months. It was a long road.

Why am I reminding you all of this? Because. Because Mason is a miracle. A walking, running, piano playing, writing letters to me, going into KINDERGARTEN miracle.

This is the last week for Mason in pre-school. This week he will go to his kindergarten orientation at Bay Vista Fundamental. He can run, jump, kick, swim, talk. He knows all of his letters, all of his numbers. He can count by 2's and by 10's and by 5's. He knows math, he can read. He can climb into play forts. He is so happy.

He is still very small for his age, and weaker than kids his age. But most people never know it. His preschool teacher and I cried tears and tears and we discussed how proud of him she is. She is going to write a reccomendation for him to the gifted program at elementary school. I bawled. NOT because I could give a rats patootie about 'gifted' but because his neurosurgeon felt that Mason would ALWAYS be cognitively delayed. He would never meet the expectation of his age group. He has spots all over his brain, where the white matter has scars and is missing.

Mason is a miracle.

He has worked SO hard. He practices everything. Writing his name, working on jumping with two feet. Everything he has accomplished has been from hard work!

On his report card he is still unable to skip, use both hands to catch a ball, and struggles with a few other little gross motor issues. HELLO!? Praise GOD! We can HANDLE that! Thank you God for this child. For showing us that sometimes what is predicted.. isn't what happens.

I feel so blessed and just had to share. Aiden is my miracle that people 'know' about. But I just had to remind you.. that there is this sweet little brother that also has beaten the odds and we couldn't be more proud of him.

I will never forget when he was almost 2 all of his playgroup friends were running and climbing up the play equipment at the park.. and there went mason, crawling on hands and knees. Mom's would look at me like I was some crazy woman for letting my "10 month old" baby go down slides and crawl on the playground. I remember those days and how frightened I was for Mason, how sad I was. He was so tiny, not able to walk. I never knew what would happen.

Mason is 'fearfully and wonderfully made!"

Mason was 2 years old in this above photo.. I remember we would call him the "eternal baby" making jokes.. but I would always wonder.. will he ever play ball and run like those kids?

Here is Mason doing his physical therapy.. it was just so hard for him to even hold his head up like this. Amazing how far he has come!

EEG's and MRI's and CT scans.. Mason has had more than the normal kid's share of testing. Most people just forget how much he has over come. I will never forget it!

NOW....

Mason is showing everyone just how much of a miracle he is.

I just wanted to share... So proud of you Mason. Only 4 more days and you will be graduating Preschool. You are amazing to me! I love you to the moon and back!!

Have a blessed week. I will update soon on the next blood pressure med whenever they figure out what may or may not help.

God bless!
The Hawk family

Monday, May 9, 2011 3:44 PM CDT

Aiden's Kidney appointment was today.

Did I really think it was going to be that easy? Walk in, get a new shiny diagnosis, a new fancy medicine, and be done on the road to recovery.

Does that ever happen? What the heck is wrong with me that I fall into this blissfully stupid roll every single time? It is like I have an incurable form of denial. It has never happened like that, why would suddenly things be different?

So first things first, a recap of events.

1) Aiden was admitted on the weekend of April 23rd. We discovered freakishly high blood pressures that didn't go away.

2) Kidney (Dr. Flores) was consulted and he decided to test Aiden for a mini water depravation test. Aiden 'failed' and was diagnosed with nephrogenic diabetes insipidus. WHY? NEPHROgenic and not CENTRAL like we had always thought? Because the treatment DDAVP didn't work, etc.

3) go home, feel nervous. Adjust to the fact that Aiden's kidneys are not working right. Cry. freak out. cry some more.

4) Aiden was placed on a 24 hour blood pressure cuff where every 15 minutes (while awake) his blood pressure was being taken. Then when he slept it took his blood pressure every hour. We had to record every activity every 15 minutes. Aiden was a total zombie and watched movies because the cuff was so annoying.

5)I decide to just completely avoid ALL discussion about this new diagnosis. I had already done #3 on this list, and then remembered, 'Wait! this is Aiden.. by the time the rest of the tests come back they will re-diagnose him 3 more times!' I take a complete break from all caringbridge, all discussion.. I go into my 'happy place'.

and that leads us to today.

So the only thing that was clear cut and understood from the appointment were the results of the 24 hour monitor.

43f his daytime (awake) blood pressure readings were dangerously high... now get this... 100f his blood pressures ASLEEP were dangerously high. Aiden has hypertension but in a weird way. Of course. The ideal drug for Aiden and his situation is betablockers. We already know we can't do that with his very low heartrate. BUT instead of putting Aiden on norvasc, one that we have been on before and seemed to work, he REALLY wants him back on the clondine patch. Again. (the clonidne effected Aiden's heart rate dramatically in the past).

WHY??? Why do you want to use this one again? He says, "With his autonomic dysfunction, they weren't really certian it was ever the clonodine.".. whatever.

I am certian.
sigh.

So now he on this medication that would be great, IF it didn't bottom his heart rate out. So now Joey and I have the joy of spot checking his pulse every night to make sure he isn't going to low. Sure! why not? We aren't sleeping anyway!

NEXT.

All the lab tests revealed conflicting information. Basically when you have NDI (kidney form of the DI) when you are deprived of water your Anti diaretic hormone goes very high. Aiden's was low. This speaks of CENTRAL DI. (the brain form). BUT some of the other tests said.. he had the kidney. So.. the doctor said he needed to consult endocrine and they would scratch their heads and try to figure this out. How can Aiden have BOTH central DI and Nephrogenic DI? Wait!...

this sounds awfully familiar!! Guys!! it is "LIKE" Aiden has DIabetes insipidus... and it is "LIKE" he has Addison's disease... but ummm no treatment works!

I am pretty certian we just rode a merry go round back to Point A.

Joey went to the appointment. I felt like just laughing like the Joker from Batman. You know, crazy loud crazy laugh. MUWHAHAHAHAHA.. I felt crazy. You are making me CRAZY!!

OK so now we know, Aiden has (AGAIN) dangerously high blood pressure.. ESPECIALLY when he is not moving. (sure wrap your brain around that!!) AND that Aiden has a rare form of both kidney and Brain forms of Diabetes insipidus.

I

Am

Pretty

SUre

that

is

called

DYSAUTONOMIA!!!!!!

OK. Now. breath. In and out. I hope you know I am sort of tounge in cheek right now. I am not ACTUALLY losing it. Joey and I are just shocked at how frusterating and difficult this is.

By NO means does our doctor not think this is very serious. It is really serious because we don't know how to treat him. If the blood pressure isn't control his kidneys and heart will be worse. I also do NOT want to send the impression that his doctors aren't BRILLIANT and aren't trying as hard as they can. They ARE brilliant, Aiden is just messed up with something totally rare they have never seen before. No one has. We have travelled all over the country, seen every dang specialist and we all just come back with.. he is a miracle. A walking miracle.

So. I am being patient again. I am going back to #5 on my list above. I will not deal with this other than to monitor his heart rate and look at the symptoms. Until someone gives me something more in writing that will provide Aiden to a new healthy life (then I will get it notorized and witnessed) I am just gonne go to my 'happy place'.

For now.. Aiden is Aiden. He is here. He is managed ok. He isn't in a hospital today. He is ok. I don't have an OUNCE of a clue to what the future holds for him... but my faith is UNSHAKABLE and I am going to use the God-given skills of denial.

I am sorry I am so frusterated. I am really just masking a broken heart. This all is SO hard to endure. I just want him better. I just want him healthy. I JUST want my child to live to be an adult.

Keep praying. Pray for his blood pressure, pray for this new medication. Pray that they can one day really understand why Aiden's body is so broken.

Tuesday, April 26, 2011 12:33 AM CDT
I am leaving the previous update on the front page for a little bit. I know my journal history is difficult to load and loooong.. but this way anyone who didn't see the 'news' can see it. (read below)

This morning I woke up startled. I sat up, looked around the room, I knew something was wrong. My heart was pounding and I sat up in bed. What was it? It took a moment, and I realized that it was only because things were different. It is like a having sea legs.. you have to get your barings. It is funny how motherhood has caused for my mornings to be so vast and changing. I am sure ALL mother's experience this phenominon.

I can think of waking with a newborn and being never fully asleep and never fully awake. I will never forget waking the day after we found out Mason had cysts in his brain, and the tears were pouring out of my eyes like I hadn't even paused from my night time crying. I have woken up to little quiet children standing by my bed, waiting for me to to wake up just staring. Breathing and staring, scaring me to death. I have woken up feeling hopeful and excited. I have woken up dreading tests, surgeries, and days of doctors. I have woken up apethetic, bored and numb.

This morning.. it was a sort of a panic. SOMETHING was different. I barely had the sleep out of my eyes, and I scanned the room. I saw the unpacked hospital bags by my bed, and remembered. Nephrogenic Diabetes Insipidus. Something WAS different.

Do I dare hope that we will manage Aiden better? Did getting admitted for a fever (that ment nothing), help us place a major piece to the puzzle? Things are different today than yesterday... and even though we are still on shaky ground, I think it is better.

Aiden has talked a lot about his kidneys and what this means. He got up to get water, and then just like me, he remembered he was thirsty for a reason. He said to the water cooler, "Stupid diagnosises."

This friday at 10 he has to go back to ACH and get some 24 hour Blood pressure test placed on him. Then back to normal. Hopefully he will be done soon enough to go to class afterwards. He has a follow up appointment for 2 weeks, to go over the gobs of labwork we got. Most of them were send out labs to Mayo clinic and Baylor. They take weeks to get results on.

I will be updating, I am sure with more thoughts and commentary regarding this new (although the same) path we are on.

Psalm 27:14 ~ "Wait for the LORD; be strong and take heart and wait for the LORD."

Thank you so much for taking this journey with our family.. 'be strong and take heart'.. we have already had our victory, now we just get to wait on the Lord to show us exactly how we have won. One step closer to a healthier Aiden. Thank you Lord!

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

Tuesday Update: The diagnosis.

So today Aiden's kidney doctor came in and asked if we 'cheated' on the test. DUH. He asked, "did Aiden wake up and drink?".. duh no. Then he said, "with no doubt Aiden has NEPHROGENIC Diabetes Insipidus". **Not Central like we had thought all a long.*** (one is controlled by the brain one is controlled by kidneys.. Aiden has the kidney one!)

You could ask me a million questions... but this is going to be my statement I can offer for now.

Aiden has ALWAYS (minimally for 6 years)had this. ALWAYS. The only thing that really happened today was that 1) we found out it wasn't CENTRAL (brain) and found out it is actually his kidneys. And they FINALLY nailed it down on labs.

Aiden has been treated for the most severe form of this disease for YEARS. They always suspected it. Infact we sometimes just say he has it for proper procedure. But NEVER do we say nephrogenic. we always say, central.

This diagnosis causes for you to NOT BE ABLE TO KEEP FLUID IN YOUR VESSLES. Ok. So.. in the most extreeme cases you have to be treated with IV fluids. That is what we have been doing for years. The meds previously have never worked on Aiden. But the IV fluids do. What have we been doing for the past 5 years? Treating with IV fluids.

Dysautonomia is a complex disorder of the nervous system. It can cause ALL of your autonomic processes to not work. This is one of them... Did Dysautonomia cause his DI? NO. But does his DI cause his dysautonomia?? I don't know. I don't think ANYONE could possibly answer that. We may not know that for a long time. Prograf can cause this. We DO know that.

I am feeling SO many emotions. The first emotion was to just cry. I THINK I was sad. I think I was relieved.. then I was happy. I think now I am numb. I think now that this is a lot to process with only a few words.

What does this do for us? This gives us a POSSIBILITY for medication. we have NOTHING now. Nada. So any possibility is good.

This is a long road.
1) we have to find out WHy he has it.
2) what meds can treat it

I am not going to get ahead of myself, as much as I want to. I don't want to throw us all on a roller coaster ride. but I will say, that we will need prayer.

Aiden will be going to have a 24 hour blood pressure monitoring at home. Some fancy cuff and belt thingy he will wear for 24 hours straight. I am waiting on Kidney docs to call me to 'set that up'. Aiden's Blood pressure has been very high.. we most likely will go back on Norvasc. That kind of sucks. I was so happy when he got off of blood pressure meds. Kids shouldn't be on blood pressure meds for any reason. Seems so wrong.

Anyway... I have a lot of thinking to do. A lot of praying. I think we need to digest the information and just see what happens. It is a sad world I live in that a bad diagnosis with no cure but possible treatment is 'good thing'.. compared to a bad diagnosis with no cure and NO treatment.

It is still hard.. even when we are happy, this is still hard.

Aiden is home. I am going to sit outside, veg for a while, Pick up Mason from school.. and veg some more. Keep praying. We ALL need it today.

Lisa

Monday, April 25, 2011 2:21 PM CDT

OK so I was going to update all about this psychic connection I had in the elevator this morning with some woman standing rubbing her forehead moaning. I felt like we were having a kindred moment..but alas more important things than my sleep deprived observations need to be reported today.

So who kows. Maybe we are chasing our tails. BUT rarely ever do we even consult Nephrology anymore (Dr.Perfect hair) not because we don't adore him, but things are status quo. We got this dysautonomia handled (in a leaking bandaiade type of way). But this admission Aiden's Blood pressure has decided to act up. Lots of very high readings. This isn't really "new" for Aiden but rather a reoccurant issue from a few years back. Infact it was what brought us to Meet Dr.Flores in the first place in 2006.

For those who read this site more than once a while, you already know this story...so I will be brief. (briefin the only way I know how..in a long way lol)

2005 until 2006 Aiden was collapsing, screaming for water, fainting, and then having very very high levels of hemoglobin and red blood cells. We have ruled out a bonemarrow disease called Polycythemia Vera, we have ruled out Addisons disease, we have ruled heart issues, etc etc etc. His blood pressure kept creeping up, and Kidney team was called in. Enter Dr. Flores. We LOVED him. Probably my favorite physician who cares for Aiden (excluding of course all of his pediatricians). Anyway.. he became very involved in trying to help Aiden. He has basically managed Aiden's dysautonomia single handed over the past years. Tried him on Vasopressin to help him incase he had a thing called Central diabetes insipidus, then changed it with florinef. He would come in and tell us how he had spent time researching new medications. Trying blood pressure meds that could possible treat his dysautonomia, and even valium to stop crises. All of the efforts... but nothing really works.

Fast forward to today. He comes in, calls us, "Mi Familia" gives knuckles to Aiden, and their secret handshake. And says that the high blood pressure is bothering him andof course all of these years still Aiden's can't remain hydrated. Kidneys are working overtime for years his BUN reads >2 (this means he is peeing A LOT) and not staying hydrated. But why? Well he has dysautonomia. Whatever.

Dr. Flores says, "OK. you are here anyway, so I want to start over. Lets not give him anything to drink for 8 to 10 hours, draw labs, do a urine analysis, check his concentration and see if he even CAN concentrate his urine normally. Sigh. We have done this in the past. He failed. (or passed how ever you want to view it) . His urine is like clear water. But in the past when we tried to treat it, it didn't work.

Back to today, SO...because this doctor is wonderful, he is repeatingthe tests again. We talked about how Aiden's chronic disease just seems to be accepted and everyone stopped looking how to make him better. It isn't good enough. So he is trying again. Maybe now that Aiden's body is more stable he will reveal more? In any case I think this is GREAT. Painless, and possibly helpful.

or not.

If this tells us nothing more than, "his brain is broken and the meds don't work" then HEY we are back to where we began. And we already have some peace here. (some). But PLEASE pray. This could be huge. And since the Hawk family isn't in the business of giving up Hope, then we believe that we may reveal answers to help Aiden. Because HELPING him is what we still need to focus on. The bandaide treatment is just not cutting it.

OK.. so the blood pressure. Could it be this? Yes. Could it be his dysautonomia? yes. Could CDI cause dysautonomia. Yes. Could dysautonomia cause CDI? ummm yes.LOL..and now you are all well versed on the dichotomy of Aiden's medical history.

I will ABSOLUTLY let you know anything when I do. I am guarded and ready for this to lead to a dead end. But like I said.. it is ok. A girl can hope. Hope for a cause, because a cause can lead to a cure. And currently we don't have either. So... that is the 'short' version of the story.

Feel free to check out my very long journal history. You can read first hand about all of this talk over the past years. Or just stay tuned and hear all about round two on trying to get CDI as a diagnosis.

(Interesting tid bit: When Aiden is admitted or in an ER and we deal with any new nurse or doctor, I have been informed to explain Aiden's dysautonomia by saying, "It is LIKE he has Diabetes Insipidus and Addison's disease mixed, but neither treatment works." true factiod)

Update coming... and I GUESS there is a small chance Aiden won't be discharged tomorrow if the tests show we need to continue on to the next level of testing.

One day at a time.. until then, keep praying!!

Always full of Hope,

Lisa

Saturday, April 23, 2011 2:05 PM CDT

5 hours before Aiden's 9th birthday party he was admitted. Fever and severe headache. He is devastated. Tomorrow morning he was going to be baptised on the beach during sunrise service. I'm sitting here thinking how my boys won't wake up Easter morning together and open baskets of goodies. I have yet to even buy. I have streamers and baloons at the house all for nothing. This is just pitiful.

Aiden is of course devastated. I am so dissapointed for him. He had to get pokes and IVs instead of fun and celebration. Unfair.

He developed a high fever and because 1) he has a port he has to be cultured and on antibiotics to make sure it isn't sepsis (again) and 2) he is in the window of concern from his previous line infection that they want to make sure it wasn't reoccurant. They have vanquo running while cultures grow.

His labs look good besides the allergic ones, he is certianly flaring. They didn't run liver numbers I'm not sure why, but it will get done next round I'm sure.

Ill keep you posted. Say a prayer for our brave boy who is just feeling sucker punched. Poor guy. :( not fair

Tuesday, April 19, 2011 4:56 AM CDT

Aiden is 9 today. NINE years old.

I remember holding you Aiden when you were just a few hours old. It was like meeting and old friend. Someone I had known for a long time, but hadn't seen. I couldn't stop staring at your beautiful face. Those round cheeks and white glistening hair. You really didn't say much, some squeaks and sqawks. But my heart changed those first hours. Something happened that made me weep every time I held you. Something changed in my being, when you were nestled up in my arms. I became a mother.

As an baby you showed more courage and strength of a hundred men, and smiled through the most horrifying moments. You taught Mommy how to grow, how to face the worst, and look to the other side.

Aiden, as a toddler you furiously ran and played. Every step you took was effortless motion. Strong and big, you had already conquered a beast bigger than anyone could imagine. Your laugh was intense and loud. You never walked in to a room.... you ran and scurried loud boisterious laughter always coming from those sweet little red lips. You were so full of zeal. You taught Mommy to laugh again.

When you were just 3 you became a big brother. Gentle and sweet, you watched over him like he was yours. You would eagerly help and care for me and baby Mason. At such a young age, you began to show Mommy what you were made of. You were becoming sick again this year, your body began to fail you, but everything you had, you gave of yourself. Aiden you taught Mommy that even though you can be hurting, you can always give of yourself to others.

A dark time in our lives hovered over us like a death. We saw you change and grow to a little boy. Wanting so bad to be healthy. Wanting so desperatly to go to kindergarten like all of your friends. Wanting so badly to eat food they eat. To go to birthday parties, baseball games. To be a part of what others did. You fought your disease again, but this time with a different yearning. A yearning not for the extroidninary.. but the ordinary. Aiden when you were only 5 you showed your Mommy how to be at peace when others had everything you desired, and still feel joy for THEM.

By 7 your had faced more pain than anyone should ever endure, but everyone described you as the 'happiest child in the world'. Your joy and silliness was all that people saw. Going to baseball games with IV's and making your scar sing the chicken dance just to creep out the other players. Friends flocked to you because you were so loyal. Small and mighty you became. As your friend's healthy bodies had growth spurts, your SPIRIT grew greater than any child should have at 7. Standing up to bullies and stepping in to protect those you love. You were becoming this child I know now. You taught me how to stop yearning for what the others have, and find my own victories, my own power against the difficult times. You showed me so much when you were seven. I think back at this time as if we had pushed through a pain that could have caused us to get stuck... and it was YOU Aiden that led the way out. You and your bright shinning light.

Today you are nine.

You are gentle. You are kind. You are a giver, a sharer. You are a worker. You are diligent. You are brave, but more comfortable being frightened. You are strong but vunerable. You care about doing the right thing. You care about those who are sick. You have a compassion for children and others that I think are only because of what you have endurred. You take your own pain, and turn it into something to make a differnece. You are a snuggler. You don't care what others think, you are Momma's boy. Your childhood has been so unlike most people's but now we don't feel like your disease ever robbed you of it, but enriched you and our family. You are unreal to me, how you care take. How you are so wise. I love you Aiden. I want so badly to make you safe forever. To take away the hurt. To shower you with every heart's desire. I want you to have all you hoped for, and all I hoped for you. And even though the punches keep coming, Aiden.. this year you taught me to NEVER GIVE UP HOPE.

I love you Aiden. I love who you were, are and who you are becoming. You have given Daddy and me so much. I can't imagine my life with out you, I thank God for you every day. I am so excited to see who you will continue to grow to be, what paths you will go down, and who you will continue to be. You are everything I had hoped for in a son. I am so proud and honored to be your mother.

I Love you Aiden. Happy Birthday my sweet boy. Brave warrior. Kind soul. I love you.

Friday, April 8, 2011 8:15 AM CDT

I'm back.

It was so hard to come back. This place has harbored both my pain, and triumphs. And for some reason it was hard to come back to this past few weeks.

When we got home from Aiden's surgery it was like a battle for normal. I was in a full attack. I think our adrenalin was pumping from just being OK, that I shoved all of the feelings of exhaustion and sadness into a hiding place.

Then the adrenaline stopped, the excitement of being just home slowed, and it all hit me like a ton of bricks. I was sad. It was over, and I was sad. Sad that I had seen Aiden go through so much. Part of this journey comes raw emotions. ALL the emotions we feel are ok, for a short time even feeling "depressed" is ok. A good friend taught me (Angel Haley's mom) once that, our sadness at times like these is the "NORMAL REACTION TO AN ABNORMAL SITUATION." A NORMAL.. reaction.. to an ABNROMAL situation.

And so it is.

I gifted myself these feelings this time. I didn't fight the voice inside me that tells me to constantly smile. I allowed it, and now I feel I am healing. I feel happy again. I feel relief.

In a few weeks Aiden will be 9. I used to just rush through this amazing time thinking of cakes and parties, but now I feel it is so marked with anniversaries of hospital admissions, sepsis, near death experiences.. that I view his birthday as more of a true GIFT. I celebrate this amazing Gift we have been given. Aiden is here. He is thriving and he is stronger than last year. How did we get to be so blessed? I am so thankful for each day with this child. I want to savor this birthday so badly. I haven't thought of cakes or parties, I can only think of how much I love him. How honored I am to spend this new year with him.

When I created this caringbridge page, it was for the event that I could be fully completely honest about this unpredictable journey with liver disease (and later dysautonomia). I wanted to be honest not just for anyone who reads it, trying to understand. But I wanted it for myself. A way for me to never shove those feelings into a hiding place any longer.

I feel like the sun is now rising in our home again. Shining brightly like a new morning on us. We are rubbing our eyes, slowly waking up in this new beginning. The bad days are behind us and a new day has begun. It is a beautiful feeling when the seasons of our lives change. And I am so thankful that the season of Aiden's suffering over the past few months are over.

I am so indebted to those who have prayed and continue to pray. I know the prayers lift us. And lifted, we are!

"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." 2 Corinthians 4:7-9 ~

I have so much to share regarding Biopsies, and plans for cinci and more testing.. But it all can wait. None of it is pressing. This deserves it's own update. It is part of the journey too.

With so much relief and happiness,
Lisa

Friday, March 25, 2011 3:46 PM CDT

Aiden's surgery went smoothly (despite them forgetting to take the PICC line out under anesthesia so he had to take it out with tears and protest).

He is home resting. We have the air matress blown up in the living room. Him and Biscuit are cuddled on it and we all are watching movies and just relaxing. First day of spring break.

They gave him a power port, it sticks out really far I think it should be easy to access with the way it looks. Praying he can stay healthy and the port doesn't need to be used for a loooong time.

Thank you for continuing to pray and believe in Aiden's healing. God bless.

Thursday, March 24, 2011 4:24 PM CDT
Temper Tantrum

I don't often title my updates.. but today I feel like it. If you are uncomfortable with venting, or reading some raw frusteration, I would suggest you wait until another update. Because Suzy Sunshine, has left the building.

Aiden's new port will be placed tomorrow. I am just sorry but I am in a terrible mood. Spent the last 8 hours on and off the phone with 3 different medical teams regarding Aiden's health and what to do next. I have listened for days Aiden beg me to not make him go through with the port surgery. I have heard advice from people who don't know what the heck are talking about, 'cheer up, look on the bright side,' etc etc ..

Because I am just being honest, At this very moment...I am NOT looking on the bright side of things. And I don't really know why I should be expected to.

Everyone else has the permission to cry over spilt milk, but I can't be angry at this? I can't be sad for Aiden. I have to be HAPPY? Well, I'm not happy. I am not happy that Aiden was born with a rare liver disease, watched him go through total organ failure, barely survive, live 200 days in a hospital the 'healthy year', then develop a new rare disease that took 3 years to figure out. Oh an by the way this new rare disease has no cure. Oh and by the way.. we aren't sure he will ever get better. Oh and by they way we don't even trust your child shouldn't ever go one day with out immediate IV access, because his life is in danger.. And by the way, after years of hoping that it would get better, we have to take the port out, he almost dies from that, and now we have to do another. Because NOW no one even will DARE to say when they think this will get better or end.

So where does that leave us? The rest of his life he gets to always have lines, and hospitals? Will this ever get better? What happened to the liver transplant? The first hell he lived through, why does he have to have more? And please someone tell me..

why do I have to be HAPPY about it?

I USUALLY am looking on the bright side of things.. because I DO feel blessed. I KNOW what others have endurred, I know so many more have had SO much worse.

But...

I am a human. A mom. My heart beats, blood courses through my veins, I am just a person. I am not a robot. Today I am sad and hurt that I have had conversations about Aiden and none of those conversations included, "WOW he is getting better." or "SOON.. we will see him cured"... No instead I hear, "He needs this." or "He is fragile"...

I don't want to look on the bright side. People every single day are grumpy in the grocery line, in their cars as I pass. They don't even smile. And I have to smile when I hear crappy news? This isn't a one time deal people...this is because there is nothing left for him. He can't process fluids. He has to have a line because his body doesn't work right. And they don't know how to make it work right. Ever.

I am feeling defeated and angry and also feeling like I have every right to feel that way.

You know whY??? Because today, Aiden is feeling defeated and angry. I spent my day making him smile, encouraging that sweet boy, telling him it would all be ok. But inside I am sort of agreeing with him. It stinks. He's right. And the one thing I will never do to him, is make HIM feel like he MUST smile. He MUST look on the bright side. I will NEVER put that burden on him. I will always show my son what amazing blessings we have. I will always do my very best to teach him to be thankful for the things we have.. but if he feels like crying out and saying, "I don't want this. I am mad"... I will never begrudge him of that.

As a Christian I think of how almost the entire book of Psalms, is David crying out to God just begging him to show him "WHY!?" I figure if David was God's Beloved, and he felt this way... I guess then it is just fine for me to also.

So that is what you get. It is like a temper tantrum on caringbridge. I don't like this. I don't want this. I want to kick my feet and scream. I know it won't do anything but in case.. just in case, there is some other mom out there that is going through something similiar. Getting a new diagnosis... or like me, sitting in the same diagnosis hoping it will change into something better. And that mom, has never given herself permission to just let it out. To just dump it to God... then let me show you the way. Because although society may be uncomfortable when we show that we aren't made of steel... Sometimes it is exactly what we need to remind not only ourselves, but our children.

This is the real life of a mom, with a child diagnosed with a rare disease, with no cure. Feels uncomfortable to say outloud? Well because it sucks.

I need prayer for Aiden. I need us to all focus as hard as possible on a cure for him. On him to heal and get better. I want him sooo bad to just get better. I know God can and does miracles every day. I do believe Aiden is a walking miracle. Mason is a walking, running, amazing miracle. I haven't lost an ounce of faith, nor have I even at all begin to give up hope.. Infact, it is now just burning in me. Hope is stirring up from my core. Go ahead, place a new port.. plan for more years of this disease.. tell me that there is no cure... It is all just an awesome challenge for our God.

I am mad, frusterated and sad for Aiden. But we are not done. We are not giving up and we are certianly not hopeless. Pray for Aiden. Pray for his doctors that they never become numb to the fact we must keep driving forward for new and better information. Pray for tomorrow that he will recover well, have minimal pain, and be able to rest at home. Pray that he feels supernaturally lifted. That he is above all things NOT DISCOURAGED! Give him courage and strength... and the freedom to just cry out if he needs to.

And that my friends ends this session of the ticked off Mom.

With love,
I am Human... Lisa Hawk

Saturday, March 19, 2011 12:07 AM CDT

Being home has been so amazing. It is so beautiful out. We are just lapping up each day. Aiden has been actually feeling AMAZING. We have had 1 day with almost no belly pain complaints. He has energy and just looks SO happy.

I want to put this past two weeks behind us so bad. I want to remember that it is OVER and now the present is what we are in. I have done very well, except last night I had some nightmares that woke me up. I know it will take time to work through all of that, but I will let my subconsious do the job, and not spend my daylight hours feeling sad.

Aiden's PICC line has been a little tricky. It isn't drawing blood, and it is difficult to flush, but the doctors made the decision to keep it in, until a new port is placed. Our trip to cincinnati is now completely up in the air. The local GI team decided to tell them they could handle all of the testing here, and so therefore Cinci said, "go for it.". UGH. Except They don't even have the equipment at All Children's to do one of the tests, he will have to go to St. Joe's in Tampa for some of it. Cinci said, of course we could come up for it, but it was completely our decision.

The problem is, they probably won't find anything. Not in these tests. So it is a dilema. One that unfortunatly is highly based on finances, and convience. I do think that although I am not loving the local GI, they are capable of doing the testing. Joey and I are up in arms over it, so we have decided to really let our main doctor here make the decision for us. I trust her that much. She will know what to do.

I am sure you are wondering, "WHY do testing that probably won't show ANYTHING".. I asked the same thing. But the answer was because it is what you have to do to make sure it is ok.

His hemoglobin has still been dropping. We started out at 15.3 at admittance and are now down to 10.2 (as of thursday). We will redraw on Monday and hopefully it will begin climbing again. If not, then.. umm well, I don't have a plan for that. lol

I am not sure exactly what the temapture is outside, but it is one of those times where there is nearly no humidity, and there is that slight cool breeze but the sun is blaring and no clouds in the sky. it is perfect. I suspect upper 70s. I love that we aren't missing this, while sitting inside a hospital. I love that as I type this I can hear a loud belly laugh from Aiden playing in the backyard with his friend. It is music to my ears.

The port placement will be sooner than later since that PICC is tricky now. Aiden said today, "I wish I could have ONE day, with nothing implanted in me. Nothing sticking into my body." I wish that too buddy. It will happen.

I want to again thank everyone for the prayers and kindness you have shown Aiden and us. I can't honestly thank each person individually, but believe me, if I COULD.. I would.

Today I begin with staying in the present, leaving that nightmare behind, with all of the other nightmares.. and enjying the beauty we have TODAY.

Psalms 30:5 �...Weeping may endure for a night, but joy comes in the morning.�

Tuesday, March 15, 2011 8:46 AM CDT

Aiden has been discharged. Praise God. Praise God. 15 days in the hospital has been too long.

His counts are continuing to drop for some reason but we can monitor that from home nursing. I'm sooo happy. I know I will cry when I see him walk in his home. Such a relief. So many bad things we are going to put behind us.

I will update later. After I bake him a double decker cake. After we cuddle and play. After we take a walk. After we catch up on the sunshine. After we watch movies and grill out and have a fire and ..and.. and..

Keep praying folks.. he still needs prayers.. but thank God for this wonderful day

Go Team Aiden!

Monday, March 14, 2011 11:25 AM CDT
quick update: he is staying. He had a rougher recovery from scope than we are all comfortable with. Then his hemoglobin actually dropped a lot more. Down to 10.7 we started at 15 two weeks ago. But we know where he ISN't bleeding from now.

I am weak emotionally so going to go home and switch with joey. I need to just be home for a bit. Keep praying. Xoxox love~ lisa

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

Aiden is done with his scope. He is sleeping in the room. I know he is tired. He refuses to speak, he uses a pad and a pen to talk. There is no medical reason for this, I think he just wants to have a little control and do it 'his way'. He is precious.So sweet and precious.

The scope revealed nothing to the naked eye. Of course we knew this was almost a guarenteed outcome. But we HAD to make sure we weren't missing something glaring and obvious. They did tens and twenty's of biospies. Testing for infections, viral issues, allergic disease, and other crazy things I don't know about. We now just wait. Wait for those results. I am so tired. I can't imagine how exhausted and drained Aiden is.

In the past 2 weeks he has been septic, had figh fevers, general anesthesia twice, surgery to remove his port, his heart monitor, scoped upper and lower. He has had 3 days of no food, he has had anaphylaxis where his throat closed on him. He has had bleeding, became anemic, and then a PICC line placed in his arm. He has had so much more than this in the 'in betweens'. Blood draws, cultures, IV antibiotics for 10 days. He has had emergency kits, night time PICU allerted.. really too much to list.

I shudder to think all he has been through... and sincerely shudder thinking that he STILL has another surgery coming up to place a new port, as well as traveling to Ohio for more tests. I keep asking myself, what happened? It seems like everything happened all at once. How is this our life?

He looks good. I mean, right now as I type this, he is asleep. But he looks better over all. His lips are pink again, and his sense of humor is back. For real. I know we are getting past this and he has gotten stronger. I must focus on how much he has overcome and what we have to be thankful for. There were several nights with the high fever, and the belly pain I thought it would just get worse and surely end up in the ICU. But he didn't. His nurses, doctors, myself and Joey, all supported him and he did ok. What a blessing that is in itself.

I think about how we were so sad he missed picture day with baseball, and now it seems like ages ago. How did we lose 1/2 of a month in the hospital. It will be a long time to really understand all of this.

I have just taken it apon myself to begin packing his bags, in the hopes that the next two doctors we see will give him the permission to go home. Let him go home. I know I will cry when we get there, whether it is today or tomorrow. I know that it will just feel so weird but so amazing. I can't wait to see Aiden in our back yard seeing Biscuit for the first time in weeks. I just can't wait.

Specific Prayers: Please pray that if it is the right thing, that he can be discharged. Please pray that he will not relapse but only grow stronger. He has spent the past entire month in hospitals or home on IV's and home nursing. Please let this end soon. I want him back to normal.Please pray we all can put the traumas behind us and heal emotionally so we can face the next steps to his healing. And lastly please pray that his doctors all have wisdom and come up with a plan to treat him.

I want to thank you all so much for sharing his page, asking for prayers, for sending happy mail, signing guestbooks, bringing meals.. etc. I can't get over how his NELL (his little league) and Mason's school has supported our family, and how Aiden's school has just gone ABOVE and beyond to remind Aiden he is missed. I can't wait till he walks that hall back the first time. I have tears just placing that vision in my head.

So I will post an update when we hear, until then he is resting now. Thank you so much for believing in this child's miracle. For fighting along side us.

God Bless Team Aiden

Sunday, March 13, 2011 1:09 PM CDT

I want to thank you all folr letting me vent. Letting me just say how this feels, being angry. (If you missed this rare event you may feel free to check out my journal history)

I do have good news. Finally. FINALLY, I can say Aiden had a good day. All day all night no zofran, no pain. A good day.

I can also rejoice in saying Aiden has had no antibiotics and has remained fever free. I think we have KILLED the bacillis.

Although GI bleediing is bad and scary, infection is the most dangerous thing he can endure. Infection like that in an immune supressed (or heck non immune supressed child) trump everything.

Ok so with this I am stopping. We have soooo much still ahead of us that I just need to savor this good day.

Tomorrow he is getting scoped, and we are praying DISCHARGED, afterwards. He will go home hopefully with his picc line and then we will then schedule surgery for his port... etc etc etc.. but like I said before let's. Just savor today.

God bless you for your prayers and compassion. Thank you for the happy mail, for the awesome video from Bay Vista Elementary, for the emails and cards and just taking time from your day to show you care about this sweet little boy. We are indebted to you for this show of love. It means sooo much.

Keep praying, keep believing and enjoy the victories of each day.

Saturday, March 12, 2011 11:06 AM CST

So I have a lot to say today. Firstly Aiden continues to improve. One moment he is feeling good (relatively speaking) and another he is very poor. We do know he is bleeding somewhere on the inside GI tract. He hasn't had a major obvious bleed (vomit blood) but we have seen it in his stool and his hemoglobin has dropped significantly. He is bleeding.

We have had a very candid talk with different doctors. I really don't feel like getting into it right now, because frankly I am in a terrible mood. I am feeling anger today. I am so angry I have to split my time between my two boys. That I was able to attend Mason's spring fling and carnival but only capable of staying for a short time and had to come back to this place. I hate that it is beautiful out and Aiden is still stuck behind these same 4 walls. That he is pale. That my family is divided. Sharing time with each child. Joey gets tball and pizza dinner with Mason.. I get to see his performance. What happened to our family being together the 4 of us? I hate this.

I don't need any advice or 'look on the bright side of things'.. I just want to say I am sad.. ok no I am mad. I am desperate for our family to be back to 'normal'. even if our normal is us at home still fighting for our son, but at least together. It has only been a while, but I am just hating this.

I know people don't understand what is going on with Aiden. One minute I am begging for prayers and the next minute I am celebrating his watching TV and smiling. Here is the deal:

It is ALL bad. ALL the time.

But I have to live in the moment. So if you see a photo of him smiling and doing a thumbs up on facebook or sharing with you here he is playing jokes on his nurses.. it is because those are our ONLY moments of joy. I live in them. They are everything to us. If he only has 20 minutes that are good.. You will hear about it. Because sometimes being the mom of the 'sick kid' is just a nightmare I am thrusting myself out of.

Believe me. I have yet to have one night of sleep where I haven't imagined or even cleared the path to the code button or staff assist. Is that crazy? I don't know at this point. I just epi penned him for God's sake!! I saved my own son's life in a hospital! WHO does that happen to? It is just bad.

These aren't things I want to ever endure or remember or talk about. But they exist. They child that we have 'emergency kits' by his bedside.. is the same child that sleeps in my home. With the potential for these emergencies everyday. Always. Every single night.

One of his doctors said to me candidly but in a caring way... the nurses, the hospital docs need to always be on their toes with Aiden. Things turn and change so fast. But then she said, But it is the same with you, at home. The risks never really stop. In the hospital, or home. It just is what it is. I know this. I have always known this. I know others don't know this. But trust me no one knows better than me, how precious each day is.

I love the blissful ignorance of people who don't know how sick Aiden is. I want to live in that blissful ignorance. I want to feed off of it and just dive into denial... because it is happier there. Today I am fresh out of denial and I hate it.

Aiden is not allowed ANY food for the next 2 days. He is getting an upper and lower scope monday. So he has to just drink. No jello, he is allergic. Just water, juice, gatoraide. For twoi days. The little boy who has been septic, had surgery, had anaphyactic shock, now gets NO FOOD. It JUST started and he is already crying for food.

I am so frusterated today. I guess it is better than panicked or terrified or horrified. I just want to have him get better. No more bandaides, no more temporary fixes... like get better. Like all those other kids out there. They are all so tall, stong, healthy. I cried today just looking at one of his best friends run and smile. I want to see AIden do that. BUt never have to worry it will end. Just do it always.

So anyway.. like I have said before. This is the real story the REAL accounts of a child and family struggling with chronic life threatening illness. So you get to see it all. Now I know it is Saturday so only a few will read this, but i got it off my chest. Somedays this is so hard. Harder than I ever admit. I love Aiden and would give ANYTHING to stop all he endures. But since that isn't an option.. I will continue to do my best and live in the moment. One amazing good moment at a time.

At this moment. He is playing legos, hungry for food, pale from bleeding, tired from surgery, sad from being in here.. but he is playing legos.

.
Friday evening:

Ok so I feel 100elieved. 1) Aiden continues to look good. Pale but good. Funny joke telling etc. 2) because our doctors have made a plan. A very good plan.

First they have consulted the hospitalists who are in house 24 hrs a day. Someone is here. They have consulted the intensivist (icu peeps) so they 'know'. If in any event (like bleed or whatever) they are totally on it. I feel so much relief. I don't have to worry about being doctor mom I can be just mommy. It just so happens to be that the hospitalist is a friend. Hello. When she walked in.. I went nuts. It was almost comical because the big fear about consulting gen. Pediatrics was having a group of residents who would maybe not be a good fit for our complicated buddy. Let' face it we don't need any heroes trying to re-diagnosed Aiden this week. That sounds mean, I don't mean to make it sound mean. This just isn't time for that.

So then.. they are stopping antibiotics completely tomorrow. They want to see him with no anitbiotics. Cultures are negative.. he has done 10 day of IV vanquo. It is appropriate to try.

Lastly.. I'm sort of in shock. But they are scoping him upper and lower here on Monday. He is having some bleeding in his stool. And they just decided to do it now. I mean sure. Why not? We have done it all in the last week. Gee what about a new port too? (Sarcasm) He starts fasting tomorrow. Clear liquids for 2 days.

It is all a lot to think about but I feel like he is in excellent care and is very safe. That is all I need to feel.. the rest is up to God.

Thank you for praying.. I think I might be seeing the light at the end of this tunnel.

Go team Aiden

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Friday am update below:

he looks ok today... no fever. He is very pale. And his stomach is distended and firm.. he had some blood in his stool. They are just preparing for a possible GI bleed. They have consulted GI team. If he bleeds or does ANYTHING wonky he will go to the ICU.

He has had sepsis and anaphylaxis.. let please not have a gi bleed. But my instinct is telling myself to prepare.

Aiden is in good hands. His doctors are excellent. Adding an ICU team only makes him safer. So if that happens we can see that as bad. Just as smart. Hopefully we won't ever need this, but I'm glad to know the plan.

We have an emergency kit ready by bedside also, again some more saftey. I want to stress that the little boy you see running around the bases and smiling in the hall at school or in these photos... is a sick kid. Always. He has a lot of things stacked against him and we thank GOD that Aiden has done so well. This has been a terrifying situation, I won't lie... but io think going home might even be more terrifying.

Of course we are here for at least a few more days so that isn't something to think about. Take one day at a time.. has turned into taking one hour at a time.

There is so much sadness out there right now. My friend just lost her sister, as she fought couragously against lung disease and my other friend is in Sendai Japan during this terrible disaster. I guess my point is, be kind to everyone because you never know what they are endurring.

Keep praying.I am scared I won't lie. I am super scared. :( this is just so much to all think about.

Hopefully this will pass and he will be just fine

Friday, March 11, 2011 11:48 AM CST
he looks ok today... no fever. He is very pale. And his stomach is distended and firm.. he had some blood in his stool. They are just preparing for a possible GI bleed. They have consulted GI team. If he bleeds or does ANYTHING wonky he will go to the ICU.

He has had sepsis and anaphylaxis.. let please not have a gi bleed. But my instinct is telling myself to prepare.

Aiden is in good hands. His doctors are excellent. Adding an ICU team only makes him safer. So if that happens we can see that as bad. Just as smart. Hopefully we won't ever need this, but I'm glad to know the plan.

We have an emergency kit ready by bedside also, again some more saftey. I want to stress that the little boy you see running around the bases and smiling in the hall at school or in these photos... is a sick kid. Always. He has a lot of things stacked against him and we thank GOD that Aiden has done so well. This has been a terrifying situation, I won't lie... but io think going home might even be more terrifying.

Of course we are here for at least a few more days so that isn't something to think about. Take one day at a time.. has turned into taking one hour at a time.

There is so much sadness out there right now. My friend just lost her sister, as she fought couragously against lung disease and my other friend is in Sendai Japan during this terrible disaster. I guess my point is, be kind to everyone because you never know what they are endurring.

Keep praying.I am scared I won't lie. I am super scared. :( this is just so much to all think about.

Hopefully this will pass and he will be just fine.

Thursday, March 10, 2011 8:13 AM CST

5:30pm uopdate

Aiden has one of his worst days ever. Poor guy has just struggled with fevers and nausia and what he calls his "blood burps". He says he smells blood like he did before his last GI bleeds. Then one of our worst nightmares occured. With in moments of Aiden's antifungal medicine, Aiden went into a full anaphalaxis. It was very scary. His nurse restrained him while I did the epi-pen on him. He crashed FAST. If by God's grace we didn't already have IV benedryl ready to be run, (like it was JUST drawn up..) then God knows how bad he would have gotten.

Respitory came and did breathing treatment with Oxygen and now he is stable and ok.

24 times. He has anaphyalxis. Offically his ID doc is scared of running anything new on Aiden. He has such a broad reaction list. All different types of medicines and drugs and foods. There is no relationship to them. They have now STOPPED ALL types of antifungals because the only other option is IV diflucan and we don't want to run that unless we are really given a reason.

We are ready for a possible GI bleed since he said he feels 'one coming'. This would just make this month a freaking nightmare.

I think to myself how much can one child take? And it seems the answer is A LOT. How unfair! I am so frusterated because we just can't get Aiden's body to cooperate with his treatments. I know we are tying but he is so complicated.

Anyway.. Joey rushed over and is now reading Harry Potter to him. He is so brave. He saved his own life today. He is amazing. I wish you all just could witness this child. He is amazing. I have never been more heartbroken and more proud than I was this afternoon. I love him. He amazes me and gives me the courage to look for strength to keep moving forward.

Please keep praying. He is ok right now. I don't think we can feel comfortable saying he is on the road to recovery. Just keep praying.

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

tHURSDAY am

PLEASE PRAY.. Aiden's fever is very high and back at full force. It could be a new infection, the old infection. They are adding new antibiotics IV cipro for gram negative coverage and now an antifungal for a fungus infection. If not improved they will echo his heart and do a scan to make sure the infection didn't 'stick' to his organs? I don't know what that even means.

PLease pray. I am scared. I may not be able to update later much. Please know that if something changes I will try to, but at times like these Aiden just needs his momma.

Please no visitors. This is important for now that he has time to rest. Thank you so much for understanding. Aiden just recieved some more happy mail last night and we hope he is feeling better soon and can play with some of the little toys he recieved and read the cards. We can't thank you enough.

I am in tears right now. I just can't begin to explain the way this feels. Fearful is doesn't really cover it. I keep thinking how many things are stacked against him. I know though he will have a tough battle but be victorious soon! God bless you and keep the faith. Even in the bad days, our God is always Good.

Love Lisa, the proudest mommy of two little warriors.

Wednesday, March 9, 2011 9:26 AM CST

I can't believe we have spent the entire month of march in the hospital. How lame. Yeah sure, its only the 9th.. but it seems crazy.

Anyway.. today Aiden got a little bump in his tempature and so we are running blood cultures to make sure there is no evidence of the Bacillis. His liver numbers also have spiked into the 70s (his normal low 20's) but that can very well be expected with the infection, the vanquo etc. So they are running hepatic panel to make sure. (aka to calm momma)

His spirits can be summed up in one word. Low. I think this just is so hard on him because it has been SO long inside. In one room .. same 4 walls and he is stuck with me.

His pain is way better, only taking Tylenol for pain, he is a tough cookie. I know he hurts, but he doesn't complain. He will start shaking and get sleepy and then we ask, "are you hurting?" and he will say yes. I think the usual question of "How are you?" just needs to not be asked anymore because he ALWAYS says "Awesome." I think he is just speaking in general. Like, Im an awesome kid.

Anyway.,., I will re update in a tad. Pray for NO FEVER. Thank you

Monday, March 7, 2011 3:34 PM CST

Tuesday ( I think?) Update

Who am I? Where are we? Being in the hospital I think has made me lose a little time.

OK so Aiden is actually doing great today!! He has some pain but he won't take the pain killers because they make him feel nausious.. so he is taking Tylenol. He is smiling and playing his DS and even cracking some practical jokes on his nurses.

He got a container of FLARP (gross boy thing that sounds similiar to passing gas LOL) and he hid it under his blanket and when the nurse came in.. he let it rip. It was funny. I think. I am sure if that happened NOT 20 hours post surgery I would be reminding him of his manners.. but sometimes laughter is the best medicine.

I can't even believe how crazy the past week has been. Weeks. Month. A long time. He has had it so hard and next week.. UGH. I am just dreading it. I don't have a date of travel. I don't know if they are doing a new port. I don't know much still. It is all being discussed.

I don't have plane tickets and heck I don't even know if how to plan WHEN to come home. What a crazy situation.

So.. I am just gonna let the doctors handle all of that and me just focus on Aiden getting well. One day at a time!

I do think we are going to be discharged on Friday... I think that is the last I heard.

I wanted to adress something incase you also saw this and wanted to ask. Yesterday on the front page of MSNBC home page they have noted that there was a National recall of Alcohol swabs because they contained Bacillis. I wanted to update adress this. Our hospital and his homehealth do not use this brand.. but his growth hormone shots were part of the recall. Our infectious disease doctors said it is hard to say if this was related. At this point, we are aware of it and just NOT going to worry about this today. I highly doubt this is related but again if it is, then we will work on it later.

In the meantime, I sound like Scarlett O'Hara and just keep chanting "tomorrow is another day."...

Hopefully another day where Aiden is improving and feeling well. Thank you for praying!!! We are so appreciative and humbled.

I will update later today if I actually learn of a 'plan' but if not tomorrow for sure.

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

Monday update below

Aiden is out of surgery. He was in there a tad longer than I expected but it all went 'smoothly'. AKA no complications. They removed his port, as well as the loop monitor. He has then in pathology and then after that they are cleaning them (lord clean them well!) so Aiden can keep them. Aiden wants to put them in a 'small box' on his shelf. Of course he does.

So he has had tremendous pain. He is getting fentynal and morphine IV. He is pretty much just sleeping with the occasional comment. I know this hurts.

The thing he was most afraid of was the PICC line, and he is actually pleased with it. Immediatly after surgery a groggy Aiden asked, "Do you have a mirror?" He wanted to see his port and the surgery sites. I showed him and with his eyes half open he smiled. Whispered... "yes". He was relieved.

I can't believe today happened. I am looking at the time and just in shock that it is 5pm. So much happened today. I remember when they said they were going to place Aiden's port 2 1/2 years ago. We were just so devastated. It was so strange for us because we knew it ment he was "sick". Hard for people to understand since we were living every other weekend in the hospital at the time.. but it just felt like a big fat step backwrds. We fought that thing because it just had so much 'meaning' behind it.. and now it is gone. He got a bacterial infection and it is gone. I wish it could have left his body because he was better. Or cured. Or healed or whatever... but it left because it got infected.

Next week we will likely be placing his new port. A new tender location. It will flush differently, be accessed differently. I won't know the ins and outs of this port. I know the first port.. (which Aiden named "Port-o- Potty") you would have to lift his left arm and turn his cheek for the blood to come out well. What will this port need? I pray it is his last port ever.

**BIG SIGH**

This isn't in the parenting books.. again, I should reconsider writing a new one for the 'out of the box' kids/ parents. This is hard stuff. Tough stuff to swallow. But it we will get through. He will be jumping on the bed playing with friends in a few weeks and we will think back on these past months and remember.. wow that sucked. Plain and simple.

Anyway... with two chunks of metal removed from my baby.. this is the first time in 2 1/2 years he has no implant. I can't wait till he isn't so sore and I can give him the biggest bear hug ever. both arms wrapped around his waist, not worrying about that heart monitor hurting him. I can't wait.

Thank you for your prayers. We are so touched! I am trying to figure out how to get another certian photo uploaded to the page.. it made me litterally BAWL. like gasp.. cry.. wahh.. when I saw it sent to me. At the baseball field where Aiden plays, they changed the reader board and it now says, "Get well Aiden Hawk". Right there, on the road we drive down every single day. I couldn't believe it. I showed Aiden, he thought it was the nicest thing and made him feel "awesome!!!" I am so thankful to all of our community for just caring. Caring that there is this nice little boy who suffers. He suffers but always smiling, high fiving, and doing everything in his power to just be a kid. Thank you so much for caring that he has to go through bad days. It means so much to not be alone in this fight.

So on that note.. GO TEAM AIDEN.. and Praise GOD for no more bacteria and heart monitor. One day at a time.. we will get there.

Lisa

Saturday, March 5, 2011 2:33 PM CST

Monday update:

He is in surgery pre-op. This should be a quick surgery the PICC will be placed also in surgery. Thank you for your prayer.

He is going into surgery wearing his little league hat. Of course. Today instead of being a sad day we are celebrating getting rid of thus bacillis yucky cootie port and getting him all safe.

Bye bye germies..

We will be updating later. Thank you for praying!

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

Sunday noon update:

Surgery came by. We are signed and consented. No day pass was given. Boo.

He is however hep-locked. Which means other than the moments he is getting IV antiobiotics he is unhooked. He did the funniest "heplock dance". I love this kid!

He is very anxious about surgery and losing the port. The 'unknown' is always the worst for chronically ill kids. They have experienced so much pain and trauma and experience and control are all the have when dealing with tough days. He doesn't know what to expect and it is scary. Baby talk, goo goo ga ga is the voice of the day. Lots of hugs and having his hands over his ears when doctors come in. He is only 8. :( hard stuff to deal with.

So the rest of the day should be good. All 3 teams have rounded and now we just have some "fun". Some visitors are planned for the day so that is good!

Today Aiden learned about 'one day at a time'. And how the Bible says 'give us this day our Daily bread". Daily. One day at a time. Not weekly bread.. but daily bread. I reminded Aiden that we don't have to worry about tomorrow.. today is the only day we should be in.

So with that said.. I'm done updating and off to paint a dinasour with Aiden. Love and prayers!

Team Aiden!

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Sat update below
Aiden' port will be removed on Monday. We had his consult again today with his surgeon Dr. Harmel. He actually did Aiden's Kasia and several other sugeries over the year.

I am thrilled to report at least a speck of good news, Aiden will get his dang ole heart monitor removed. FINALLY!!!! We are happy about that because he can have the MRI he needs in Cinci and ummm.....lets face it, it is a chunk of metal that sits under his skin and on his ribs for the last 2 years. If he doesn't need it, why keep it there? It is very uncomfortable!

SO then they will place a PICC line in the opperating room, into his arm. They will keep that placed until his new port is placed in yet another surgery.

When will the surgery be to place the new port? I dunno.

Who will do it? I dunno.

How long will Aiden be getting IV antibiotics? I dunno

How long will Aiden be in the hospital? I dunno

Will the new port get the same bacteria? I dunno

I dunno much!

Infact the only thing I know is that it is saturday and officially THE most boring place to be is in the hospital. No child life, no activities, heck we can't even get out to the outside play area.. it's locked. The resource center with the books are closed. The gift shop is closed.. and GASP the good coffee isn't served on the weekends.

It makes you wonder WHO are they providing these services for? Hmm cuz the sick kids are STILL here. Just some food for thought.

Anyway, so we are bored. Which is a heck of a lot better than scared, and panicked or the previous emotions we have been feeling this week. Bored is pretty much an awesome feeling to feel if you look at it that way.

Aiden got a new DS (handheld video game thingy) from a family friend. Sweet story, it touched us deeply. Aiden lost his DSi on our last trip to cinci.. and I was the mean mom who refused to just replace it, I had to 1) exhaust every possible location 2) remind the child that umm this is expensive! Of course he did purchase it with his birthday money/gifts, but I digress.

So anyway, he got a new ds game as his bribery or reward or consolation or whatever you want to call it for the past week of torture. It is pokeman and he LOOOVES it. He has had his face in that ds since it came yesterday. But that leaves me with just staring at him playing his game. Now I'm bored... so here I am writing a long drawn out update for you all to read. Aren't you lucky!?

In all seriousness, The mood in the room coming from Aiden in general is great sadness. He has burst out into tears several time, when words like PICC line, or surgery are mentioned. It is hard for me because I am feeling utterly helpless. I keep saying, "I know you feel this way. I see you feel sad."

What am I supposed to do? He has every right to feel this way! I totally agree with him.

I Keep thinking about our upcoming weeks ahead, and how many 'plans' we had. All seem like they have changed. Baseball has begun and joey is coaching Aiden's team, without Aiden. It doesn't look like Aiden will be back for many weeks.. or month. How tough is that? Over the years during every single season Aiden has hospital admissions and Joey has coached. Aiden comes to the games sometimes with his port accessed, IV's hanging out of his shirt. He has made his scar sing the chicken dance for is team mates and he has creeped out many children with some stories of his IV and his heart monitor. You know 'normal' dug out talk. So the families and kids are all pretty used to it. We love little league. It is so wonderful and normal.. and now it is so hard to miss out on it.

I feel bad for Joey, as tomorrow is picture day for baseball and he will be doing his team photos without Aiden. Ouch. Every year I buy the team photo and have it mounted on wood. This would have been year five of our team photo with Joey coaching Aiden. That is our 9th season. I am going to ask if the doctors will give Aiden a day pass to go, but I seriously doubt they will. I know they did that in Atlanta, but I don't think here. I never heard of it before. I know it sounds stupid to most people, but the little things are often the BIG things to Joey and I.

Today, like perfect timing Joey said after their game the OTHER team aproached him, with get well cards for Aiden. He said it was just an unreal feeling. I INSTANTLY cried hearing him tell me about it over the phone. HOW amazing?? These boys play their game and then defeat our team, then walk over with a fist full of cards for Aiden and Joey. GULP. Wow. I love NELL and those families. Just love them.

We are working hard to keep our spirits up around here. I think after Monday is over, we will be able to put some of this behind us. I know what Aiden has overcome this week. I know how close to becoming VERY sick he was this week.Ihave thanked God over and over for His protection. We are so thankful. We are still feeling so blessed inspite of the struggles. Aiden is with us still. That is our blessing. He is here and we are still fighting.

I never stop thinking about the families I have met and become close to along the way that have lost children. My best friend of course, lost Haley over 5 years ago, and never a day doesn't go by when I don't think of them. Of her. I never want to forget that what may seem to one person as a terrible experience, that to others, (my grieving friends) that this is a dream for them. A chance to still be with their child, hospital or not.. they just want them back. I thank God for giving me such a perspective, the "Eternal perspective", because I don't get caught up in bitterness or jealousy. Instead I do honestly feel thankful, even at times like these. I still can see the things to be thankful for.

So with that said.. I THANK YOU!!! Thank you for the cards!! For the notes! Oh my, Aiden's school made a BEAUTIFUL Friendship quilt with notes from classes and staff and everyone! I have it hanging in his room at the hospital. All of the RDS family has just overwhelmed us with the most ADORABLE cards and drawings from the preschool. Other schools have gotten involved too! I cried a bucket of tears reading one letter from a young woman who suffers from dysautonomia.. Brooke, Aiden is writing you back! Wow. speechless. There are so many people who have taken the time to send a letter and a card, I just can't even thank all of you! I never knew so many people cared. Where is THIS stuff when you watch the news? The news just talks about how the world is going to hell in a handbasket... but from my view I see so many wonderful caring loving people.

I know a few people missed where I have posted our adress and asked me to repost it. I will do so, because honestly this has been a wonderful healing thing for Aiden. He feels so supported and not alone. He has a long road of surgeries and procedures ahead of him and I plan on stashing a few of the letters so they drag out along the way.

Anyway, our addy is

850 29th Avenue North
St. Petersburg, FL 33704

Mason has LOVEd that you have also included him in some of the happy mail. I know this is hard on him too. We will get through though. I know it. This is a season of bad, and soon we will be back to our 'normal'. I have faith.

Stay tuned tomorrow.. I will update and maybe be able to answer some of the questions that "I dunno" the answers to above. In the meantime.. keep praying! God bless!

Thursday, March 3, 2011 10:07 AM CST

Friday Am Update:

I apologize for not getting back here like I said I would yesterday. We recieved some sad news about Aiden's infection and found out they believe the bacteria already colonized onto the port. They said inalmost all cases of Bacillis bacteria they have to remove the line. It is just one that has a history of always colonizing. SO with that said, Aiden was devastated. He never really breaks down that much at all. He isn't one to cry out but he was hysterical.

The nurses in the hall could hear him with the door shut crying,and they paged the childlife person on call to come and talk with him. They sat in the room for about 30 minutes making a port buddy. (a little doll) and talking about feelings and different things. I left the room hoping it would allow Aiden some extra independance and freedom to share. I think he tries to protect me. Something I wish he didn't do.

So after a whole lotta tears we never actually saw the Infectious disease team again, they will come today and talk with us. The good news is that Aiden is now fever free! They couldn't safetly opperate on him with out him being more stable because the bactera is in his blood and can spread to other places. It just isn't safe.

Of course now that he is fever free my first question when I see them this morning will be, "are you sure??" I know we don't want to risk Aiden by keeping this infected line in his body. BUT I am his mommy and I just have to ask one more time. Im selfishging praying to God fr a miracle that this line didn't colonize and that we can't keep it. It would mean soo much trauma to remove it. An IV in his arm, then every blood draw he will be poked and poked.. then another surgery in a few weeks to place a new line after weeks of poking and owies, the new sore port will get pushed on and poked. It just is too much for one little child. So I am praying, whether it seems fruitless or not, that this bacteria magically dissapears.

So with that being said, Aiden had a very restful night last night. He is actually still sleeping and by the Grace of God I hope he sleeps all day! I can't IMAGINE how exhausted this child is. His body riddled with sepsis fighting as hard as it can.

It is Friday, and believe me I had to count on my fingers to figure out what day it is.. Neither Aiden nor I have been outisde since tuesday night. I haven't a clue as to what is going on in the world around us. When we get into such serious situations my world suddenly sucks in and becomes so small. I can't imagine how people are just enjoying their days and walking around like nothing is happening. Don't they know? My son was fighting for his life! I know it sounds crazy , but you sit up on this 8th floor staring out the window at the people below and you have these thoughts. It feels almost like you are in a time warp and everything else just stops. Except it doesn't stop.. I have stopped, my world has stopped.

I can't believe how quickly everything can change. It is amazing how much we never know what is in store for us the next day. I just am still trying to digest that it is friday.. how did that happen?

Anyway I want to thank all of you for your prayers and thoughtful comments. Joey and I both are just so thankful. Aiden received his first set of happy mail from some of our local friends and preschool and wow! That was awesome.We laughed and laughed at the little drawings the preschool kids drew. I cried when I read a few prayerful letters to me and Joey. What a boost. You just can't imagine how lonely this road has been for us at times. Having that has been such a precious reminder that even though our world has stopped for a moment, others are there with us.

I think childlife with be back today to do some work with Aiden and make sure his little feelings are being expressed. Please keep praying. I know this is hard on me.. but God bless Aiden. This is sooo hard on him. His friends are all being normal, carrying on with school, activities,beach time, baseball games and he sits. Waiting to hear from more doctors. Telling him what they will do to his body. How helpless he must feel. It aches me to my core. I can't lie. This has been his whole life.

one trauma after the next.

SO we need to bust out of here and get some beach time and baseball time as soon as possible.

Keep praying and believing.. we will have this one day behind us. Even though we are in this valley.. I know we are not alone.

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

Thursday AM:

Still on my cell so I apolize for the short nature and poor spelling.

Aiden is still febrile (having fevers) even though he is infact receiving the correct medications for his specific bacteria. So far he has grown Bacillis. Aiden has vanquomycin IV and Clindamycin IV running. His CRP was 5.2 this morning. Not good.. he is still septic. The nurses have made it clear they are ready at a moments notice if something turns or he decompensates. He is shcoking everyone with his 103 fever and bacterial infection and being awake and even played legos. How is this possible? He is a mracle.

He is very sick though and this child has a very high pain tollerence and hates being down. Fighter.

His white blood cell count is dropping significantly, which is sort of part of sepsis. They lose the ability to fight the bacteria and this is why it is crucial to treat with the perfect drug.

The bad news and the big breath holder is whether the bacillis has made a home in Aidens port. Colonized. If this is the case I'm sad to say he will have undergo surgery (which is dangerous with a blood iinfection) to remove the port. If this is what they must do.. then we will do it. if it means saving his life! It is a no brainer. But of course risky and maybe not neccesary. Infectious disease will advise us further. It is their job.

I'm sick and upset. I just don't know what to say other than I am begging God to heal Aiden and to place a courage in me that only He could. I'm frightened. I think of psalms and how it says... "even though I walk through the valley of shadow and death... I fear no evil." I am fearful but I am trying to give it all to God. I want to feel no fear.

Last night my sweet husband stayed up through the entire night with Aiden. Holding his hand. Then went to work. Please pray for his strength today. I love him so much.

I will update this afternoon. Xo
Lisa

Wednesday, March 2, 2011 7:02 PM CST

Fever is back 102.6 headache high blood pressure this infection is still having a grip on my sweet boy. Please pray. Joey is here with us and will be all night if needed. Poor aiden

Tuesday, March 1, 2011 9:47 PM CST

6:00PM update

Aiden is finally fever free for two and a half hours! his blood pressure is normal thankfully as well. He has now had 3 rounds of the Vanquomycin (antibiotic).

When you have a line infection the issues that occur or that CAN occur include the actual bacteria colonizing on the actual line itself. It is a piece of plastic (basically) that lays in a vein feeding into the tip of the heart or nearby (depending on the actual line). So this is obvioulsy bad to have bacteria hangin around. Sometimes the bacteria can stick to this no matter how many times you flood it with antibiotics. It just can go that way. We had this happen with Aiden was only 2 years old with his broviac. After 1 1/2 years with the line, it became infected and no matter how many times we tried to clear the infection it wouldn't clear. It had to be removed. Good news back then was, he was doing ok and it was time to take it out. NOW... well it is a different story. He relies on this line all the time. It is a big deal to think about removing this port and getting a new one. So... it isn't even a discussion yet. At this point, we try to clear the infection and hope that in a few weeks/months it doesn't re-apear. Obviously it is a dangerous thing to have line sepsis, but with our amazing team of doctors on board, we have him in the safest situation we can.

I am feeling peace.

CRAZY huh? I don't know if it is just a supernatural peace of the Lord that has just overwhelmed my spirit, or if this is just because this is familiar to me.

I know that the GI bleeds have been frequent but I am pretty sure it will never feel familiar. I am praying that we see NO evidence of a bleed this time, and until he is scoped and cared for in Ohio.

I can't thank you all enough for the outpour of prayer over our family. It has been so overwhelming to see so many people send me a note saying, "we are sending happy mail". I kind of wrote that in a desperate plea and in a place of sadness.. normally I wouldn't ever ask for that but I suppose that God knew best and laid it on my heart.

I want to so badly adress my other hero in my life. My little Mason. Chronic illness and disease isn't hard on just the one child who is sick. The siblings who are raised in this are equally heroes in my eyes and heart. Mason has been born in a home that has a different lifestyle. We love each other so much and when I say "team Aiden" I really mean.. "team Hawk". They both know they are each other's biggest cheerleaders and best friends. They have each other for the rest of their lives to rely and depend on. I am so thankful to God that he blessed us with Mason at the time he did. IN the way he did. A tender spirit. A sweet soul. I just want people to know that although this amazing child who is sitting next to me, in this hospital bed, is my hero, my fighter he has a little brother who is also strong, who is also a hero and who also endures.

Thank you so much for loving our family or if not loving us, at least learning about our journey in a world 'outside the box' of medicine. Rare complicated disease that has no real orgin or understanding.. can have a face. A beautiful face. Green eyes, blonde hair, and the most sweet loving soul ever.

I ask you to believe in your hearts that he will one day be healed in a way that he never has to struggle on a playground, or feel the pain of infection, or the sickness of dysautonomia. I believe in my heart this almost 9 years of a marathon fighting to make him well, will end (and HAS ended) in a beautiful victory.

I am feeling encouraged and stronger and more DETERMINED than ever to make this child and our whole family take daily steps into health and happiness. I have cried a bucket of tears for him last night and this morning... and honestly I am so tired of crying about it.

Anyway, I could go on and on.

Thank you so much for caring. I am just so humbled. I wish you could feel how much I love him. I love him so much. I yearn and want for him to have all of his dreams to come true. I just want it so bad for him. I won't ever give up.

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

Wed march 2 9am update:

Aiden has already grown gram positive rods bacteria. Please pray. His line is infected. I'm just in shock.. yet I knew it was happening when I saw his vital signs. I told joey, this is it, he is having a line infection. Who needs cultures when you have instinct?

This is a serious problem. I am just not gonna 'go there' right now regarding what this implies or can lead to. Hopefully we will kill this bacteria fast.

He has redeveloped a fever this morning this is very concerning to me. I won't lie. it is scary.

I can't update very well now, but will later when we speak to infectious disease and pedi and call transplant team. I need more info. Keep praying. And thank you for all your love for our little boy.

Ps/ no visitors at the moment or until we have a grip on this.

God Bless
Xo
Lisa

~~~~~~~~~~~~~~~~
March1 945 pm update

Can't believe I'm Typing this... aiden is back in the hospital. In ER currently getting ready to move to a room. Long story short, he had finally got his line deaccessed, (needle removed) this morning. He had a great day then at Mason baseball game quickly turned. Left shaking and came home with bright bloodshot eyes, red skin fever and excruciating headache. Called his dr at home. She sent us here immediatly... we are treating for line infection (sepsis) with IV vanquo.

He has had extreemly high blood pressure 140/100 and terrible headache. Resting heartrate 128 which is High for him (considering he bradys normally). Poor guy got sick fast.

To say aiden was crushed to come back is an understatement. I'm so sorry FOR him. Poor guy.

I'm totally done with NOT asking for help. I'm the world's worst at accepting/ receiving help.. but I'm done. I submit. So I'm thinking it is time for Aiden to get some "Happy mail".

It isn't like you can't just look up our addy on google maps like everyone so I'm going to make this easy...

If you want to send a note, a little letter, a photo of your pets (he loooves animals) please send Aiden some happy mail to

Aiden Hawk
850 29th ave north
St. Petersburg, Fl 33704

So yes.. I know any friend who knows me has their jaws on the ground. But dang it, I am suffering watching him suffer! He is so discouraged. Not to mention it just starts all over in cinci in a few weeks.

Ok. I'm not going to get emotional, just ask for prayer. Thank you for continuing to do so.

I'm on my cell, will update as often as I can.

Pray fever goes away.. pray no line infection,... pray aiden Gets. A. Break.

And pray for baby brother mason as he ran down to side walk crying after Aiden tonight. This is so hard for all of us.

Maybe some happy mail for mason too.

Thank u. So much. This is hard for me to ask for. I'm out of tricks.

Monday, February 28, 2011 6:10 AM CST

Update:

Aiden has his port still accessed.. (that means there is an IV that is hanging from his chest) but we haven't run fluids since Saturday. We wanted to see if full playing and 24 hours of no fluids would be ok for him, before we had the nurse remove the line/access. Of course last night, Aiden came to us, asking to hook him back up to the IV fluids.

We chose not to do so because the zofran seemed to be 'enough'. Having dysautonomia and a form of it that effects his ability to keep fluids in his body is so hard because if it were up to his doctors Aiden would be on fluids every day of his life. Every day. every night of his life.

Instead, as parents Joey and I have to balance quality of life and work with his malfunctioning nervous system.

This is a lot of pressure on Joey and I as parents, but it can't be any other way. Anyone who is a caretaker of someone with a life threatening disease or a serious chronic illness knows that you will become the most important part of the care team. We are the eyes, ears, and reporters also know as the 'advocates' for Aiden.

If were up to me. My selfish heart, I would never have one piece of medical equipment in my home. I HATE it. I fight it. every single admission I drag my feet, I need convincing. It is SO HARD. But having all of this pressure on our shoulders isn't something we would ever exchange for NOT being a part/ major player in Aiden's care.

It is part of the beast.

And believe me, I have to remind myself that the beast is the DISEASE, not the treatment.

Sometimes I have to remind myself of this over and over and over. The IV poles, the lines, the medicine, the big decisions... they are not the enemy, the disease is.

I wish I was a niave mom who didn't know all of this. I wish to GOD I didn't have to make life changing and even life saving choices for my child on almost a daily basis. I wish I was like all the other moms at the baseball opening day. Casually watching those kids run on the field... instead I see Aiden, barely making it half way because it was too much. GOD THAT KILLED ME!!! I sat there crying inside. They don't know what is under that shirt.. IV's dangling. I want to be like them. I don't want to watch my child have these 'normal' moments and count each one as lucky. Maybe I want to take it for granted too?

I don't know. I am so frusterated with how much Aiden has suffered and how much is ahead for him. I admit it.. I am a human, and as his mom I just wish it was ME and not him.

We are waiting to hear the schedule still from Ohio. The stuff they have planned sounds on one hand amazing and full of answers and information.. on the other hand it sounds like torture. Scopes of upper and lower GI, then they will place a pill camera in his stomach so they can video all the parts they can't see on a scope. THEN he will undergo a very specialized MRI with contrast in two forms of the vessles the wrap around and feed the ENTIRE Gi tract (lower and upper) and then feed him a contrast to watch it go through the inside of the GI tract. Some of the tests they ordered our transplant coordinator has never ordered before. The scans will look for strictures, adhesions, lymphnodes, tumors, anything that doesn't belong. he will have his thyroid tested only by blood first, then they will scan if the labs show something suspicious.

I am so thankful that Aiden is part of a forward thinking team, a group of doctors that care deeply about STOPPING this nightmare verses placing bandaides on it. I wish I could express to you the amount of debt and gratitude I have for them.. Just like the treatment.. I have to remind myself, they are not the enemy. The disease is.

I am whipped. I know I am not my "normal" self, but this isn't normal. So bare with me. It is hard to not worry about travel to Ohio, plane tickets, future testing, Mason at home with Joey, being alone, wanting to be strong.. it is a lot of pressure.

The great news is: Yesterday I saw the old Aiden. Full of zip and energy and back to his 'normal self'. All except that he can't eat much of anything with out pain. We grilled out on the grill and we made his favorite turkey burgers, garlic fries, and fresh snap greenbeans. The only thing he could eat with the 'insides' of the green beans. A few bites of burger, he stopped. The pain hasn't gone away. I wonder what it is!? I know we will find out.

He has also lost weight. I look at him and I can't believe how thin he looks. It looks so strange to me, his pants are falling off of him. How am I not supposed to worry when I see that?

UGH.

Ok enough.

So this is what it feels like to step inside my head this week. It is HARD.

H
A
R
D.

I love Aiden so much. I just am a little ticked off right now with all of this. DOn't worry...I know, some days are easier than others and this too shall pass. Joey and I had a terrific date night Saturday and laughed so hard, we both almost forgot all of our worries. Soon we will get back to that for everyday... until then I will let the Lord carry my burdens as best as I can give them up to Him.

So now to put on the Super mom face, and get back to my job. I got two wonderful little boys that I am going to have some great fun with today. (after catching up on homework).. maybe a picnic in the yard or walk on the beach. One way or another we will MAKE it a good day.

Keep praying! I will update soon!

Lisa

Wednesday, February 23, 2011 7:38 AM CST

Update 5:30pm

Aiden is on IV's at home. BIG. FAT. SIGH. OF. RELIEF.

This has been so stressful just waiting for him to either improve or just get worse.. Now we KNOW he will improve. His dysautonomia was the worst crisis this past admission we had seen in 2 years, it doesn't at all suprise me that he has struggled this week. It suprises me how hard it still is, after all of these years.

I feel like he is soo much safer. Ironic, I know. But I am so relieved. I love Aiden so much. This has all been hard for us, but we are going to get past this crummy time and find some answers.

He was a rockstar during his port access. So afraid, but just breathed in and out. I am over the moon proud of Aiden. I wish I was half the person he is.

I will update tomorrow.. his nurse will be out for labs and I hope to tell you how much he has improved since today.

Feeling revived emotionally and now working on spiritually,

Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
7:30 AM

Well my little buddy is still about the same. Bad night last night.. ok morning.

While at the doctor we got new information that Aiden's thyroid is now enlarged. What now? I have no idea what that means, but our pediatrician said she wanted Cinci to invesigate it when we get there.

When will we go to cinci? I don't know that either. I am not sure the day they have planned, it is one of those, when they call.. we will come. I have no choice on the matter, they have to be able to get a scheduled O/R and have the team ready to scope him, also remove his heart monitor, and now possibly scan get a closer look at thyroid.

Under no certian terms is he to attend school until he is scoped. The doctors are clear on that. If he catches another stomach virus/fever/illness we can have more GI bleeding and cause his autonomic nervous system to become more unstable.

This stinks.

It has been a long time Joey and I felt so concerned. Joey called me this morning from work and said, "I feel like we took 3 steps back and are where we were 2 years ago." I don't think we are 'there' but I think it sure FEELS like that.

I don't know how to make this update cheerful and perky... I don't feel cheerful or perky. But hey, that is ok. This is part of our reality, somedays are hard. I'm not ashamed to admit that.

I will say, I am so happy that we are home and he is hanging in there. I did want to add there is no sign of bleeding that we can see currently. I am so happy about that. It really is a relief.

This will get better, I know it will. We are in a small valley right now. Nothing we haven't conquered or crawled out of a hundred times. I want to thank you for coming and praying for us, encouraging us.

I will update once I learn the travel dates.

Lisa

Monday, February 21, 2011 8:15 AM CST

Aiden is home. I would normally be celebrating this but I have great apprehension over it. He is still feeling terrible. If it doesn't improve then we will be back for labs and then probably some home IV fluids. I am just waiting hoping resting all day will do the trick.

We could really use the prayers. I know you all pray already, but this just seems different. Like we have this thing looming over us. I wish I could just see what is going on inside him. I know he will be scoped soon in cincinnati but what will that reveal, if anything?

He had a bad night last night, and is feeling pretty down in the dumps over it. We took the boys over to the beach to just walk and just celebrate being 'outside' and 'out of the hospital.' I don't know if it was the right decision, since he is still so weak. I didn't know.

It is so hard to be the 'adult' and make the tough choices we make. It goes against my every fiber to just sit quiet and wait for him to heal. I want to just push through all the pain and sickness and move move move. sounds ridiculous but it is hard. I think denial sometimes is a beast that I will never conquer. Sometimes I wonder if I ever WANT to conquer it.

Anyway, keep posted I suspect we will be having more updates soon. Most importantly keep praying.

Ps/ I wanted to highlight one thing for those who didn't catch it above in my FAQ spot. (which I am going to update and change around some) Just for some awareness... I wanted to share:

WHAT IS DYSAUTONOMIA?
Dysautonomia is a medical term often utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A dysfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment.

The definition above ring so true for Aiden. dibilitating symptoms that pose significan challenges for treatment.

Keep praying! We will figure this out.. I know it. Aiden needs us to always Believe and never give up hope!

Love, Lisa

Saturday, February 19, 2011 8:39 AM CST

Ok so he was doing awesome yesterday. Had an excellent day. We wnt to sleep and poor guy threw up again with blood in it. The good news (I know how is this good?) Is that he only did it once and it wasn't a big amount. The general thought is that he tear or whatever is bleeding just wasn't healed or sealed up. It isn't dropping his hemoglobin more so it can be one of those bleeds that look worse than they are.

Look I know this is all graphic so I apologize. Just know his labs looked very stable today and that we r in being treated for his dysautonomia.

I am so thankful to all who work so hard fpor us. I do know that sometimes being a medical professional u can get sucked into being a counselor. It has been hard and I know I am 'off' this visit.

Mason will be spending the night at a friend's house so tonight Joey can stay with us. I need him here. Sometimes his strength is all I have.

In my heart of hearts I do not believe whatever is cauwing his bleeding to be a new big serious thing. The bleeding in itself is serious and awful but I do not think he has some new underlying diagnosis I think his esophogus is just messed up. We WILL get through this. He will get scoped at the correct facility. We will have this put in our past and move forward.

This is dramatic and awful and scary to SEE but the reality is.. he is safe. I have to tell myself and not keep hitting the panic button.

I am so thankful for the prayers and help. I have not even faltered in our faith and I know this will be resolved soon.

Pep talk complete.

Love Lisa.

Ps/ he is watching cartoons and doing ok.. smiles and hugs galore.

Friday, February 18, 2011 6:17 AM CST
11:30 am update

Labs look crazy different but improved. His fever is gone wbc still mildly elevated at 12.3 hmph not really worried. He has nibbled abou 6 hashbrowns and drank a gatoraide. Mason is hanging with us in the hospital room.. so it is different environment. Silly Mason brings it all back to normal.

We are thankful for the prayers and kind words.I can't wait till we r home and just moving past this... hopefully with no "next time" looming.

Will update later.. God bless

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
7 am update (vent)

This has been a very difficult time. How did all of these feelings and fears happen in only 24 hours? Yesterday he was brought in to the hospital for vomitting blood. This time the less dramatic form of coffee grinds (digested blood). I keep repeating this same word in my head.. trauma.. trauma.. ugh. This has been the same re-traumatization over and over and over. 4 months in a row, almost exactly 4 weeks apart each time, Aiden has a major GI Bleed, goes into a dysautonomia crisis, then spikes a major fever, always being possible sepsis from the 'tear', and then slowly recovers. Only to do it again.

SO we are probably heading to Cincinatti for another scope. I think. I recieved an email about it, they are in discussions on the urgency of the matter. I am totally on board with this, at this point because I just have to know.

He also has his entire body covered in scratches and scabs from digging at his skin. He is releasing some histimine like he used to do in the worst crisises. (he has had 2 bone marrow biopsies about this in the past and no answers) His labs are terrible. His wbc is high.. which means nothing to me since ALL of it is high. It is like his blood is thick dark concentrated ice tea. Polycythemia is the medical term for it, but the reasons behind it are unknown. Hemoglobin 16.3 (3 points too high with blood loss even!)platelets jumped 200 points! Everything is just thick and dry.

They have treated him for adrenal insuficency with solu-cortef, treated him for possible sepsis, treated him for the histimines and mast cells that are releasing, treated him for the dehydration and fluid loss... but it is all like bandaides. How do we stop the wounds from starting in the first place?

Doctors in the ER are so used to seeing him like this for 5 1/2 years that they just order the usual, and we move to the floor. I want someone to HELP HIM. But it all comes back to there is no cure. There is no real known help.

I am not proud to admit that I have had a very difficult time through this one. I feel a little post traumatic stress. I am normally a strong/rock, but we had a difficult time in the ER and it shook me up. Last night when he spiked the fever after Joey left, I called Joey and begged him to come back. I couldn't stop shaking. I couldn't stop remembering when we almost lost him last year.

It isn't like I think about this EVER, but when you are reliving so much the same, it is impossible to not 'go there.' almost NINE years this child has been in and out and in and out.

CHRONIC illness sounds so tame and so mundane. I vision a boat on a river that always has bumps that never smoothes out.. but instead.. chronic illness is actually a long drawn out river that has smooth glorious sections and then wild roaring rapids. Twists and turns that are death defying and terrifying.. and they are always the same ones. The same twists and turns rocking our boat, shaking us to the core.. over and over and over and over and over. For years. And years.

And years.

WHY did it go like this for him? I know so many kids who have been transplanted and never stepped foot back in a hospital again. WHY Aiden? I know these feelings of defeat will leave when I see him jumping on that hospital bed, I know I will block this from my view when we are home.. but today it is so hard.

I had to leave last night. In the last 9 years I can count on 1 hand when I have had to do that. I couldn't stop shaking when they announced he had a fever. I had to switch with Joey. I knew in my heart he would be ok.. but I knew I wouldn't. Aiden needed someone strong, someone who he could turn to and see no fear, and last night.. I wasn't that mom. I hate that it went that way, but I just couldn't stop shaking. Too much sometimes.

Today is a new day, I feel strong, rested and ready to take on this wild rapid ride, hoping it has taken a turn back to the smooth waters. I love Aiden so much. He is such a nice child. So damn sweet and loving. Just so undeserving of any more suffering.

I pray that we have some answers and that someone can just find a stinking cure to dysuatonomia for all these kids who are suffering.

I will update later, most likely from my cell, so bear with me.

Team Aiden's proudest member,
mommy

Thursday, February 17, 2011 7:09 AM CST

Well sad news Aiden is back in the hospital. He has had one of his dysautonomia crisises plus had yet another GI bleed. The insane amount of medication he has been taking to prevent this has obviously not done the trick. I feel shredded. I love our good days, but these bad days are such a nightmare.

Please pray. He was experiencing some confusion and his hand was tingleing (sp?). I'm on my cell. This update is brief.. he has had double doses of zofran, blood cultures, saline bolus, and labs. We now wait.

Update soon. He is asleep now, praise God.

Lisa

Tuesday, February 8, 2011 2:55 PM CST

A month or so ago I heard news that our dear friend Michelle (aka Spencer's mom for anyone who has followed this site) nominated Aiden for a very special award. She nominated Aiden for "Every child makes a difference". I had NO idea she did this, and honestly wasn't even sure what this was all about. It was like a whirlwind. I recieved a call about posting the nominations, then the next thing you know we recieved a letter stating Aiden won in his age catagory for the region!!

It was such an incrediable letter. I cried my head off. The whole 'reason' he won was because he had come up with the idea to raise money for All Children's Hospital Radiothon. So many people were intragual part of his success and we just THANK YOU!! Aiden raised nearly $1,000!

The crazy part was. It was from his heart. It wasn't me. It wasn't Joey. It wasn't a school thing or anything other than Aiden. He just said, "I want to do this for the sick kids." Plain and simple. 'nuf said.

So we found out we were going to celebrate his win at Disney's Hollywood studio. It was crazy. They had this 'red carpet" event. fake paparazzi and fans.. classic Disney Style. We all dressed up. (I won't bore you on how much I loathe wearing a dress) but after all was said and done it was so special! Michelle was actually able to experience the awards ceremony with us and I wouldn't want it any other way. If there was an award for "Every Friend Makes a difference" Michelle would win it. Always organizing meals, someone to clean the house, taking Mason on a moments notice and letting him sleep at her house for days while Aiden is in the hospital. But most of all She is always... I mean ALWAYS happy FOR us.

Let's face it. Not every person is happy for others when they get good things. Sometimes people are jealous or negative or self reflective. Whatever you call it.. not everyone is a friend like this. Aiden has suffered more than any child should ever. Just one admission he gets held down, screaming, crying. He is poked, and prodded. He hears terrifying things and feels terrified himself. And he is just a child. So then days like this happen. He gets a special day at Disney.. because a friend wants only the best for him.

Sometimes I feel like my 'hospital mom' existance is like a big sociology experiement. (I think I have said this before on this journal). But it really is. You get to learn A LOT about people.

Who runs away during the hard times, who shows up? Who runs away during the good times, who shows up? I have seen it all. I have had expectations shattered both in the good and in the bad. I have seen friends step in where family steps away and vice a versa. If only I could apply the 9 years of experience I have to the Lisa of the newborn Aiden. I could have saved a lot of heartache and dissapointment in people.

Ok why am I talking about this? Back to the point. So a GREAT friend, cared enough to nominate Aiden.. and that little bugger won. He won! We went to this awesome ceremony and he won prizes!! Joey and I can't afford the things they gave us. Heck we couldn't afford to do the day at Disney. It was just AWESOME!!!!

Here are some photos of the events.. After the awards ceremony we got to then change clothes, and play in the park with our friends! Spencer and Ian are the two best buddies you could ask for.. it was perfect to share this with them too!

So I just want to say.. THANK YOU to everyone who was involved in this special day for Aiden (and us!). It was something WE will never forget!

Part 2: (sorry this is long!)

So in other HUGE news.. I am sooo nervous about this.. but also excited. The doctors have come up with a very specific wean schedule. As we all know, Aiden has been on prednisone his entire life. Massive doses, more than average transplant patients because of his other diagnosises. Big bursts of 60mgs for months and then every other weekend for years. It isn't normal for liver kids to be on steriods like this, but sometimes with certian illnesses prednisone becomes that 'evil neccesity'. (singing Angel Haley's song prednisone in my head now) So we love it and hate it. But it isn't good for him. You can't live a long life on this medication with out it damaging your other organs and bones and eyes and.. whatever. So... the time has come. We begin "THE" wean.

Since for the most part Aiden has had NO function to his adrenal gland. (this is a common side effect to ANYONE who is on long term steriods the adrenal gland essentially shrivals and stops working) It is a very dangerous process to wean him. So. We are now "waking up" this gland that his body never knew existed. Why would it work on it's own? It always has been supplimented with artificial steriods all its life. But now.. it is time for it to work.

The hopes are.. maybe this will help his dysautonomia and Addison's type illness. (ok fancy words..aka means this may help him live a normal life!)

So.. the wean schedule is just a schedule. At any moment we stop and repeat. it is scheduled over 3/4 months but the doctors feel realistically it can take over 1 year to complete. IF it is even possible at all. The problem with Aiden weaning?? Major 1st issue.. The endocrinologist called me and said.. if we see he is not tollerating this then it is urgent you increase dose and call us. Bad news? The symptoms of him not tollerating this.. is basically identical to his dysauontomia. Sleepiness, headache, nausia, GI issues.. etc. Uhhh. this could be on any given day. But with Aiden it could spin him into a tailspin. They reminded me that (And I QUOTE:) "Aiden turns faster than most any child into a very sick child.. we HAVE to be on top of this."

UHH ok. I'm scared.

So here is the schedule because I KNOW there are some people who are curious about it. And heck.. why not share it here? I mean does anyone really read this place any more?! LOL.. (just kidding)

(for privacy I XXXXX out the doctors names)

Mrs. Hawk,

Here is the steroid taper that Dr. XXXX and I came up with. Please call or email me with any questions. As we discussed, if Aiden does not tolerate the taper, then resume the previous higher dose and give us a call. He may only feel like he has a slightly lower energy or decreased appetite or stomach ache. Please remember that when he gets sick he will need a higher dose of steroids to help him get better once he is on the lower doses of hydrocortisone. I mailed out separate scripts for the hydrocortisone taper, stress dose hydrocortisone and injectable hydrocortisone (3 scripts). You would only need the injectable hydrocortisone for an emergency if you are traveling or not near a hospital. The injectable hydrocortisone can be administered IV (via the port) or intramuscular injection at the dose listed below. You can start the taper when you are ready.

1. Prednisone 2 mg twice daily = 2 ml twice daily for 2 weeks (Equivalent to hydrocortisone 18 mg/m2)
2. Prednisone 1.5 mg twice daily = 1.5 ml twice daily for 2 weeks (Equivalent to hydrocortisone 13 mg/m2)

THEN STOP PREDNISONE AND SWITCH TO HYDROCORTISONE TABLETS

3. Hydrocortisone tablet 5 mg twice daily for 2 weeks
4. Hydrocortisone 5 mg tablet in the morning and 2.5 mg (1/2 tablet) in the afternoon for 2 weeks
5. Hydrocortisone 5 mg tablet in the morning for 2 weeks
6. Hydrocortisone 5 mg tablet in the morning every other day for 2 weeks
7. Check cortisol level by blood test 48 hours after the last dose of hydrocortisone.

**At any time fever or surgery now and for 6 month after taper, Aiden will need stress doses of hydrocortisone 20 mg by mouth every 8 hours until the fever goes away or solucortef 50 mg by IV 30 minutes before a surgery or anesthesia for a procedure.

Sincerely,
XXXXXXXX, MD

EEKS!

That is FAST. So I forward this along to transplant.. as they requested and their reply was.. "we are pleased."

Ok.. but I'm scared! I'm soooo scared!! I know I am supposed to just trust and be faithful, but I am terrified. This is JUST like coming off the prograf. A major leap of faith. A lot of transplant centers would just keep their children on 'status quo' just because they have the "if it isn't broke, don't fix it" mentality. But not Cinci. They strongly believe the rare form of dyautonomia he has, is caused by drug toxicities. This is the best chance of a fuller life!

But I'm scared.

I know it is a leap of faith and if I wasn't terrified, I wouldn't have to rely on my faith... but I do. If you haven't ever been there, it must be hard to imagine risking your child's life or organs just for the possibility they can grow or they can sweat. (I am now crying just typing that) It must seem actually like it goes AGAINST human nature to possibly risk your child for them to maybe have a good outcome but possibly have a bad one.

It does. It all seems so frightening.. but everything with being Aiden's mom has been terrifying. Can I be honest? I mean really honest? The other morning he slept in. He had a bad night the night before.. zofran headaches, sick. That morning it was past 9:00 and he was asleep. I sat on the couch concerned. Joey was home and we just kept saying how it was so abnormal. We weren't panicked.. but just this twinge of fear in the back of my head. I couldn't contain myself any longer... I walked in his room, climbed on Mason's bed to peer into the top bunk... and checked. Was he breathing?

I know a lot of moms SAY.. Oh checking your child while they sleep is normal. But unless you have a child whose heart rate drops as low as my child's and have had a world renowned cardiologist tell you how dangerous it is... you don't know the REAL fear I feel. Every morning. I sigh a relief. I know.. I will probably never stop. But I have seen too much with this child. Too much emergencies, too many close calls.

And now, we are messing with the meds.

I pray to God.. and ask you to please pray also, that this wean is not only successful, but is safe! Please pray that he has the SAME miraculous outcome that he has had off the prograf. Pray for no rejection. Pray for no eosinophillic disease to return. Pray for allergies to stay calm. Pray for his adrenal insufficiency. Pray for his dysautonomia. Pray for his kidneys. Pray for his body to gain strength and health and that his bones will grow! pray for Joey and I to not feel terrified but for us to CLAIM the victory that we already know we have won! Most of all.. pray for Aiden, as he has sooo many hopes of one day being medication free. Free of sickness and illness.

It is a new exiciting chapter folks! And it is time to "believe" all over again!

More updates soon to follow!!

Team AIDEN

Thursday, January 27, 2011 4:51 PM CST

Endocrine appiontment was today.

We are so excited about this. It has been the talk of this family now for weeks.. did he grow? did he grow? He seems like he has grown. But his shoes aren't tighter and his clothes are the same. I could tell he had lost some weight and thinned out.. did that mean growth? It was too much to bear, we were sooo excited to find out.

We sat and waited in the waiting area. I was obsessively watching this husband/father bully his child. I couldn't get over him in his business suit and shiny shoes. He held his iPad in his hands playing some game and his little one looked over his shoulder trying to see. He would shrug him off, litterally shove him with his shoulders, giving him looks of pure disdain while he continued to play. The adult. The dad. His lovely wife was sitting with two entire seats dividing them, whispering her displeasure to him, and again he would look at her with disgust and anger. The little boy would reach over with his chunky little fingers trying to touch the screen and he would yell with hate in his voice.. "Get off!" I just wanted to walk over there and snatch that iPad from him and say..

Give the kid a turn!

Yuck. You see all kinds of people in hospital waiting areas, and these are my least favorite. Looking as if their time is better served ANYWHERE but for their child. It always makes me just so thankful that God gave ME and JOEY these two boys. I will gladly share my game with them. I am so thankful they weren't born to other people who couldn't care less that they have struggles.

Anyway, I was itching to leave this jerk dad and the waiting room and see if Aiden grew. Yes, I know, on the grand scheme of things this whole growth thing isn't a life threatening issue.. but quality of life issues to OUR family weigh far more important than all else.

Endocrine is a really interesting type of practice. When they do an exam you better not be shy. Questions about puberty and odors are just part of the teritory. When she began to explain technical anatomy terms to Aiden, I blushed and cringed.. I finally had to annouce that I just wasn't 'mature' but I was ok, and to continue the discussion.. I'm not perfect. I try... but sometimes I lack. And today I lacked. Boy parts... are not my speciality.

So when the big moment arrived and they came back to tell us the growth.. they said.. (drum roll)

"He grew only 2cm." They looked dissapointed. But Aiden and I whipped our heads to each other because ALL we heard from that was...

"He grew..."

Praise God. He grew. I had a very difficult time dealing with their downer reaction. I kept thinking... But he GREW! They explained that not only is 2cm in 4 1/2 month not equivelant to what his peers are doing, that he NEEDS to have what they call "catch up growth" that means he needs to grow at a FASTER rate than his peers. His feet needed to at least grow a size. (at almost 9 years old he wears an 10 1/2 shoe or 11 at best)

Sigh.

Raining on our parade. Well not really, because.. HE GREW. His growth plates had all but filled in at a very young age and with out this growth hormone therapy he would have no chance of growing at a normal rate. I am ok with just a smidge. I am....AND I am very happy that they have decided to increase his growth hormone to see if it helps him improve.

It is all so weird. What WE percieve to be good or bad news in life is ALL based on our personal experiences. Life experiences. So when Mason's progress report showed that he still is unable to balance on one foot and can't track with his eyes well, and that he still does a 4 finger grasp with this right hand... I was THRILLED! Why? Because the rest of the report said, he met ALL of his acedemic requirements saying he was ready for Kindergarten. HELLOOOOO!! This is the child who wasn't walking at TWO YEARS OLD. The child who has cysts in his brain, white matter damage and some 'cute special' syndrome to boot. He is a walking miracle! WHOOHOOO he will go to Kindergarten. Amen amen amen.

It is all about your experiences.

So.. Aiden grew.

A child who beat ALL the odds to surive has grown. A survivor has grown.

It may have been only a smidge. It may have not even changed his plot on the growth chart.. but Amen amen amen.. this child bounced out of that office cheering that he grew.

And that my friends is worth it all.

We may have tiny kids.. but they have big hearts. Count your blessings and don't foget to dance in the rain.

Lisa- proud mom of a kid who is 2cm taller.

Friday, January 21, 2011 6:29 AM CST

we are home. Home home home home.

I may have laundry piled up, and had to eat Taco bell because I had no food... but it is SO much better than the hospital.

Aiden was so tired yesterday. Broke down in tears so many times over different things. Owies, and missing friends, and being sad. I think he honestly was just exhausted and feeling sad because of all of the things he has been through.

I know I need some time to just pull up my boot straps and get tough again, but honestly...Joey and I both feel really beaten down.

It is hard to see your child hurt. It really is. I just feel bad about it. I wish I could take it all away. I hate it for him. I really do.

Anyway, thankful we are home... the plans are as of now we will treat this like it is a super rare side effect from rapamune. I guess why not? so now they jut trippled his dose of zantac. he was already on 45mgs twice a day.. now they moved him to 150mgs twice a day. Also Maalox 4x a day. In addition to all the other medications he takes.

I am hoping to GOD (PLEASE!) let that have been the last time he has a GI bleed in his life. I never want to see that again, and I certianly do not want my sweet boy to see it again either. God bless him.

Update later... I promise.

Wednesday, January 19, 2011 8:55 AM CST
still updating from my tiny key board on mycell. So this won't be long. It seems whatever this is Aiden is doing is very much a repeat. This is what the doctors told me today:

1) he has a small gi bleed
2) it causes vomitting (which makes it look awful and traumatic and frightening)
3) he then devleops an infection from source and WBC shoots high
4) he gets fever

It all happens so fast it seems as one thing at one time but this has been the sequence.

There is a *rare* side effect that our transplant team has seen only once ( doesn't this sound familiar?) That rapamune can cause GI bleeding. IF and I say if because they aren't sure, the rapamune is causing this then who knows. I know we can't stop it.. but the doctors think these bleeds actually are very serious because they accompany (sp?) Fever and infection. If it is causing him to become infected then we have a problem.

I don't know what to sayh other than this is scary and exhausting. Hasn't Aiden already endured enough? Why does this poor kid seem to get every possoble known (and unknown) complication? It seems so unfair.

Granted. Life isn't fair so that whole thought process is in vain anyway.

Since I am terminally optimistic I have comprised a very short list of postives that come from this experience.

1) video bingo is today. Aiden gets to play.
2) ummmm
3) uhhhhh
4) welll.......

Ok so the list is a work in progress. I am sharpening my texting/updating from tiny cell phone skill. That's a bonus. I think.

Ok well keep praying. Pray that they can get down to the bottom of this. Currently the vanquomycin worked his wbc dropped after 2 dosed from 16,000 down to 5,000. It makes me gasp to think about that infectious process running rampant with out the vanquo. This would be a very different update with a very different tone.

Praise God for our pediatrican who comes and cares for Aiden so well.

I will update later.

Lisa

Tuesday, January 18, 2011 8:20 pM CST

Ok what's the deal? I don't update in 3 weeks then bam twice in one day. Lol. Wait, I don't know why I'm laughing... has the hospital food already gotten to me? Yep.. we r in. And not only are we in the hospital but this update comes from the miniature keyboard from my cellphone. This will be a short one.

You can either 1) go to the November 16th hospital admission in my journal history and see details since this is a total deja vu... or 2) just believe when I say... deja vu.

Presented with dysautomia.. vomitted blood.. finally spiked fever... waiting for antibiotics for sepsis protocol.

what does that mean? It means it is highly unlikely (knock on wood) that he is septic but we will run a broad treatment until cultures come back. Keeping him safe.

It also means that he more than likely has a virus/infection of some kind. His wbc is 16,000 which means something is probably up. So anyway we have at least placed him in the right place. The hospital.

(I know u r impressed that this is all from a cell phone)

I know God has his hand on Aiden.. I know he will be ok. I don't understand the bleeding. He has NO eosinophillic disease as of nov 16th. In anycase the bleeding stopped and we aren't scoping. We will speak with cinci.. I suspect a scope will be in our future up there this year. Until then we treat as always steriods, meds, etc.

Poor guy.

I appreciate the prayers and thoughts people have sent us through facebook and through prayer chains. It means so much. I will feel at ease when I see him perky and feeling himself. No matter what you NEVER GET USED TO THIS. It always sends a jolt of panic through your heart.

I will update soon. God bless and keep praying.

Lisa

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

Second verse same as the first.. and third and fourth and..

Aiden has been doing so well. Such a drastic improvement from even just a year ago, but it isn't with out its bumps and snags and valleys along the way. He is currently on the couch with zofran and a trash can, he is having an off day. It comes and goes and it isnt so bad as it was. His labs were recently more 'dysautonomia-ish' (new word) than usual. I think Aiden is strong and brave and just pushes through a lot. I think he will be fine, the medications he takes keeps him from his frequent hospital stays and he hasn't had a crisis in 3 months. (praise God!)

All of his doctors have been so happy that he has managed this illness so amazing well. I think they all agree we are already at a victory if he can just be mediocre and only have a few hospital stays a year verses 15 or 20.

I feel impatient because I want it to be zero stays but also zero days where we battle it at home, in this couch-laden-zofran-taking state. Go or stay is the usual question I have fluttering in my head. Labs or no labs? Hospital or no Hospital? I don't know. I just wait, and see if time buys me the right answer, and it usually does. He is getting better, he is so much better... I just want it all to happen now.

Aiden's endocrine appointment is on the 27th. I haven't been so excited about an appointment since.. I don't know when! They will measure him, check all of his growth and see how the growth hormone shots are working for him. We are so excited. According to the spot on the wall where we mark his growth.. he HAS grown. A smidge. I think. Maybe? I hope! So needless to say we will get a definitive answer soon, and we are very excited.

In other very sad news:
This past weekend our liver 'family' lost a 4 month old infant and a 22 year old amazing young woman. To think of these families and what is on their adgenda for the week makes my stomach turn and heart heavy. Memorial services and the emptiness that follows. I can't stop thinking about it. All weekend It just swirled in my head. I was cleaning my kitchen on Sunday and just scrubbing my baseboards, then suddenly I just got this overwhelming feeling of, "is this my life? How did this happen?" How did it happen that I would know so many children who have not survived these awful diseases?

Sometimes coming to this page is a place for me to be not JUST the Lisa that you see in carline or with her coupons at publix. Laughing with friends at church or with my family being 'normal'.. but this page also lets me be the Lisa that has a large circle of friends who ho fight every day for their children, who grieve along side each other. Who understand PILES and mountains of medical bills, hospital bills, debts, fundraisers. Perscriptions needing filling, appointments needing to be made. Holding down crying children, and just crying into your pillow because it is just too much.

I have found that the expectations that others have placed on me, and worse the ones I have placed for myself, often are a prison.

I know, this is a deep update. I am sorry to share such sad news. But hearing the news of Mallory's passing and little Maddox has just broken my heart. I can't really talk about it in my everyday life... so here it remains.

Say a prayer for these families and others.. and hug your kids or loved ones today. not tomorrow, but today.

A new update very soon to follow, stay tuned

Love Lisa

Wednesday, December 29, 2010 7:53 AM CST

Over a 1/2 million hits on this page. I got an email letting me know that I missed out on this milestone. Wow. I think back to how many updates I have shared, and how many tears we have shared together. I can't believe how far we have come.

On Sunday at Church, I just couldn't stop crying. I tend to get a little weepy during worship, but usually it is because I am praying and hoping for Aiden and other Children who are on my heart all the time. But this Sunday I just couldn't stop being thankful.

It happened.

Aiden is better than before. He just is. He is better than he was. He has improved so much. He is stronger, his blood pressure rarely ever changes, his migraines are almost gone completely. He has energy all day with just moments where he needs rest vs the past few years when he had only energy in a few bursts and needed to rest whole days.

I know I say these things and then we are scooted off to a big admittance or we start with IVs at home.. but that is ok. I can say we are improved and better but still know the reality that it isn't 100one. I just want to embrace this new phase. This new normal.

In the past it was so frightening to say it 'outloud' here, but while in Church I was just THANKING God over in my head, I thought this would be something I Should share. No such thing as Jinxing.. there is no wood that needs knocking on. There is no fingers to be crossed and no wincing as I just say, Thank you God.

One day a long time ago Aiden was thought to have a progressive disease where he would end living in a bed or a wheelchair. We didn't know if his Dysuatonomia was going to become so unstable that we couldn't get his basic functions to support him, the specialist thought it was a strong possibility that he would be disabled for the rest of his life.

I remember that appointment. I remember sobbing all over Joey crying and angry. I remember being sick in my stomach for months. Constantly grieving and fearful. I remember not wanting to take photos of him because he was so sick and had no energy. I remember him saying, that he thought he was dying. It will always be what I remember as the worst time in our lives. Our marriage. As a mother. As a human. Months went on while we had to carry him everywhere. I would park near the grocery store carts so I could just scoop him up and place him in it. We had to put his mattress on the floor for months because he was on IV fluids for so long and we couldn't get him back in his top bunk bed.

Then... they stopped the prograf.

Isn't it wonderful when things change. When you have amazing doctors that keep possibilities always coming, who think SO far outside the box a new hope is brought to light.

It was all just a guess. A guess that the prograf was doing it... the only way to tell was to take him completely off. A child who has had over 12 recorded rejections and one rejection that was biopsied and catagorized as Moderate/severe. Take WHO off Prograf? The main antirejection medication, because of a GUESS?

It was the best day we had in years. I had prayed it could be possible, but wasn't sure it would. It was a leap of faith, and Joey and I were the first to jump.

Now, here we are, over 1 year later and he is off and improving. A hunch turned to hypothesis.. and now it is getting proven.

Yes there are times where the mattress comes from the top bunk and is laid on his bedroom floor so his home IV's can reach. But it isn't as frequent, not nearly as frequent.

We are getting there.

This year will always go down in my mind as one of the most traumatic years ever. To have almost lost Aiden this spring only weeks before his 8th birthday. It is a thought I don't even like to think about. BUT! Praise God, He is here, playing his legos, filling my house with laughter bringing hope to other children who suffer from rare side effects from their medications. He is here. Wonderful. Loud. Amazing. Kind. Messy. Joyful. Boy. Wild at heart. He is here.

We are ending 2010 and I am going out on a limb to say that this next year will even be better. Just like at Church on Sunday, I am full of tears of Joy. Tears of thankfulness. We have made it through another year, stronger, more resiliant and even closer to what we all have believed in with Aiden.

His whole life has been a struggle. Since he was born he has fought to live. Please God let this child have the same freedom other children have.. let him KNOW that he will be ok. He has fought a great fight, and won with integrity and bravery and compassion. I am so proud of him.

Prayers to all the children who are still fighting their fight like our Aiden, and special prayers to all the friends I have made along the way whose brave warriors have won their fight and now are healed in Heaven.

2011 I am READY. I am ready to take you on. No more fear now more hiding behind crossed fingers and knocking on wood. 2011 will be our best year yet. I just can't help but BELIEVE.

God bless!

The Hawk Family

Tuesday December 21st 2010 10:44 AM CST

Happy 8 year Liver Birthday Aiden Hawk. I am so proud of you, so proud of how you have lived these 8 years. You are the bravest and kindest little boy I have ever met. You are a fighter and a warrior. You will never let your illness define who you are, no matter if it is a good day or bad you are always a winner and have conquered the battle.

I remember passing you off to that nurse when you were just an infant. I gulped and choked tears, begging God you would come back to me alive from your transplant. You have given me my hearts desire, I go every day with my heart outside my chest. I love you so much my brave warrior. I love you.

Photo and video editing at www.OneTrueMedia.com

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

Update from our trip... XO

OK late I know, but it was hard to get a moment on the road to sit down and type an update.

We are home.. it feels awesome to be home. I always giggle when people come to my home can call it 'cozy'.. usually referring to the small size, but when we got home late last night it was the first word I could think of.. sigh.. cozy. Good to be home.

The trip over all was actually delightful and pretty smooth sailing. The most important aspect of the trip, the hospital annual clinic appointment/ testing went very well. Aiden was extreemly scared. It think partly because the big hospital is so unfamiliar to him.

The morning started very early with several pokes and attempts to get labs. The amount of labs they have to draw blew a vein half way. I felt so bad and couldn't believe he was just begging them to take it from his port. Wow, what a change. I guess you get used to what you are used to.

So after a difficult way to start the day Aiden was even more timid about what was to come. I hate that it started so bad, it just set the stage for a whole lot of fear and tears.

The way it works when we do these day full of appointments we litterally run from one part of the hospital to the next. Run. Like grab a kid, throw over the shoulder and RUN. So it doesn't help that with my lack of coffee (Aiden wasn't allowed to drink so neither was I) I misread the schedule and saw the GFR/ ultrasound first. oops. Well it seems at a whole other end of the hospital the Dexascan people were waiting. And waiting. I was getting irritated wondering why GFR was taking so darn long, then I finally asked scheduling to check if I had made an error. (NOT ME!! ha) And yes, I did. So we grabbed kids and took off for the Dexascan area.

Dexascan is a simple test, no owies just a quick picture of his spine and bones to test if the prednisone/steriods he has been on his whole life have cause his bones to weaken. We know his bones have stopped growing because of the steriods but thankfully they are solid and healthy.

As usual, Aiden stayed in his baseball hat for all of his tests. They ask if he wants to remove it, and he always firmly tugs on the brim and says "no".

Once finished with that we were told to immediatly check in with the GFR study back at the other end of the hospital. Grab a kid.. run to nuclear medicine.

Once there, they explained they needed to do his third needle of the morning. They needed to inject a radioactive dye in his vein while he lay perfectly still in a special scanner to see if the medications he takes for his transplant, have damaged his kidneys. Aiden began to cry. I know it is scary. I know it doesn't seem like a big deal considering all he has been through, but he has the right to cry. Why not? It isn't fair.

So after the found a vein and they injected the dye, he had to lay still on the machine for 9 minutes. Again, hat snuggly on his head, he bravely climbed onto the bed. The loud hum of the machine scared Aiden, and he just layed there so still trying so hard to be brave.

Immediatly after this test, which was only phase one of 5 for this paticular test, Aiden had to go to a 1 hour ultrasound of his organs and vessles. Again to see if there is anything happening that the eye can't see. It was a nice relief because it is painless and sort of cool to see all of your "guts" on a tv screen.

For the next 2 hours after that Aiden was brought back for 4 more finger pokes to see how his kidneys have been processing the GFR test/dye.

I had gone back to the radiology room with him, where the same nurse was waiting to do yet another poke. Aiden began to ask questions whether or not the needle made a click noise like his port needle and the nurse in an irritated tone replied, "Oh my gosh you are such a worry wart!"

HUH? you say whaaat???

"I hate it when these kids just worry over such easy tests, it will be fine." she says trying to make the first comment not sound so bad.

I replied "I would like you to remember he is NOT a worry wart, he is infact educating himself because he has been traumatized in the past. I am proud of his questions and hope you would encourage him to continue to ask them."

I know she understands, she probably regretted making the comment in the first place. She knows these kids suffer so much. I know she was probably stressed that we had been so late and pushed her day late.. but never is it ok to dismiss a child like that. I won't allow it. They are just children. And they have every right to be fearful. Worry wart or not.. this child has seen the most horrifying things imaginable.

We didn't get to eat lunch really, just scarfed down some scraps, while we ran from appointment to appointment. But finally it was all done, just one more thing to do. Clinic with our transplant team and get the results.

It is so weird to go up to the transplant clinic. I still feel like a stranger there. They didn't do Aiden's liver transplant, I didn't have that experience of waiting in that hospital. I still think of Atlanta and will never forget all we went through there. That will always be our 'transplant clinic'... This place was different. The place for answers. A place of a different hope. Not a hope for a Gift of Life, but instead the hope that he could live the gift to the fullest.

I always get emotional thinking about how we were when we arrived that first day a few years ago. How scared we were for Aiden and just how serious they treated his illness. Now we know the diagnosis, we know the meds that help him the most. Things are so much better.

The appointment was great. They were so happy that he had been admitted so many less times this year than last. They were thrilled that he had already begun the growth hormones and he tollerated them well. We were very dissapointed to hear that the local GI team didn't send the reports or pathology of Aiden's scope from last month, after the large bleed. It was the only loose string we have to still handle. very frusterating.

Over all Aiden is getting better off of the prograf. He has been off the prograf well over a year now. Only on Rapamune and prednisone as his immune supression. The prednisone had been slowly weaned but we were certain wouldn't be lowered again. But we asked if they would consider it, and to our shock and excitement they said yes! Aiden is now dropped from 6mgs a day to now 5 mgs a day! I can't believe it. It may not work with his eosinophillic disease but it is worth a try to help boost his growth.

They also said, that he didn't need to return for 1 YEAR~!!! We were so excited. They were so happy. Dr. Yazigi, (my hero) gave him many hugs and just smiled the entire time. She has done Aiden well. She has helped to give Aiden a new life.

Here they are after their exam. Thank you Dr. Yazigi.

So it is working. All of it. The stopping of the prograf giving his body time to heal from the toxicity that it caused him. It is working. His allergies are better, and now his dysautonomia is improving.

You know medical miracles don't have to be in the course of one day, or over night.. but this to me is a medical miracle. Aiden is so much better... and we are never giving up that he will be completely healed from his dysauotonomia over time.

Our trip was full of adventure, sledding, snow ball fights, visiting friends and family.. but it all happened so we could have that one jammed pack day at the hospital. A day to hear only good news. That hasn't ever really happened before. Never can I remember us going to a doctor and hearing ONLY good news. I am not sure I can describe what that feels like. Almost like a little exhale. A little breath out, from years of worry. I know this year we came so close to losing Aiden. I will never ever forget what happened this past spring. But now we can end the year rejoicing that he IS getting better. That we will one day be able to call him healed.

THANK YOU for praying for him. For not being apethetic. For not forgetting that he is just a child. I know we will get there. I am never going to stop believing, now I am sure it won't be long.

God bless, thank you for reading this very long update, and following along with this brave little boy's journey.

With relief and even more HOPE than ever!

The Hawk Family.

"But I will restore you to health and heal your wounds,' declares the LORD" Jerm 30:17a

Saturday, December 11, 2010 12:43 AM CST

Well its that time of year, we r headed back up to Ohio for Aidens annual transplant clinic and check up. I am loving that I can actually use my cell phone to update while in the car. It's like a play by play report. Currently we are trying to decide about how to handle the weather/road conditions. It seems there is a massive cold front (arctic front?) Coming through exactly our travel path. Sleet snow you know the whole 9 yards, in the mountians. It could actually be fun! (Well if you aren't Joey, the worlds most ummmm "effeciant" driver.)

So I will update when we are stopped at our first location. And hopefully will have my new camera up and running. Yep you read that right! I finally got a replacement camera. It isn't nearly as fabulous as my older one but it works! Yay. I'm back in business. :)

Thank you for all the prayers and warm wishes... I know God has his hand on us and our sweet Aiden.

Love,
The Hawk family

Tuesday, December 7, 2010 6:04 AM CST

( My friend asked me to write a little something on her blog about a project Aiden is working on, so I did. I thought I would repost it here for others to read.)

Aiden's Radiothon

This is my(Barb) friend Lisa. Lisa has not only had to battle Chronic Illness with one son, Aiden but her youngest son Mason as well. Through all the turns, turmoil and tragedies she has dealt with each one head one and with a grace that has a beauty of it's own. It is my privilege to have her as a guest blogger on our site today because her and her husband Joey's heart. I hope you enjoy her blog as much as I do. Thanks Lisa for your time and your love. Barb and Kim

Aiden's Radiothon Fundraiser: (If you would like to help Aiden in his mission go to Team Aiden on Facebook and email his Mom Lisa)

When Aiden was born 8 1/2 years ago, I didn't know he would be sick. I didn't know he would need a transplant. I never knew he would struggle for years with complications that couldn't be fixed, and weren't understood. I only knew, I had a baby boy. A new beautiful baby boy that I had hopes for. I had hoped he was kind. I had hoped he had a heart for God and was strong and giving. I never knew the obstacles he would be facing.

This path of chronic illness has carved him, shaped him, and developed him stronger in areas, and weaker in others. It is like a rush of water against a soft shore, taking pieces of it with each crash. I remember him at two, already had been transplanted, and coming off of yet another rejection. He was loud and vivacious, strong and full of toddler fury. He drag his IV poles, crashing through doors, filling the hospital halls with his contagious laughter. I love thinking of him like that. Seemingly so unaffected by it all.

Years have past and the waves crash harder on that soft shoreline. He has lost a close family friend, because her organ didn't come in time. He has seen so many children sick in the next hospital room with out Mommy's and Daddy's to hold them. He calls them "strays" and is confused to why they are always alone. He has been teased by children calling him short or saying he doesn't look old enough to be in 3rd grade. He has sat in doctor's offices while they have discussed terrible side effects, possible outcomes, and risks and benefits as they forget he is there, listening, fearful.

I have prayed that as God has allowed this, that he would apply a grace over him, stronger than anything his father and I could teach him. Allow him to have a strong sense of peace and most of all let this be used for good, for the Glory of God.

A few weeks ago, Aiden received a note in the mail, reminding him of the upcoming Radiothon for his local Children's Hospital. He read the note and immediately came up with a plan. His green eyes lit up, as he read it. He looked up and announced he wanted to raise money, "to help the sick children". It was unprompted, his idea. An idea pure from the heart. My mind immediatly thought back to myself holding him as an infant, praying and hoping he would be kind, giving, and a child of God. What a road this little guy has traveled, but yet the destination is exactly as I had prayed for.

Aiden has worked hard to raise money, a coin drive has started, and now with the help of many friends there are jars and collections happening in so many places. It is such a gift to see Aiden get power of his disease by doing something to help others. My heart is overflowing. Over the years I have been so fearful.

Would he he just be immune to the illness since he sees it all the time?

Would he just turn an apathetic cheek, or would he choose compassion and look on others the way we hope others look on him?

I am so proud to see that he has chose this path. I know that innocent 2 year old HAD to be shaped and molded by the raging waters to turn into this little boy that has grown to be such a warrior for other children.

I never planned this life. Living with an IV pole in my living room. I never imagined we could be still on the frontlines so many years later, yet be so full of Joy. The grace I prayed for to fall upon Aiden, is shinning this very week as he counts to coins, and wraps the pennies. It may not have been how I had hoped.. but Aiden is exactly every bit the child I dreamed he would be the day I first looked in his eyes.

Sick Liver but Giant Heart

Wednesday, November 24, 2010 8:13 AM CST

The day before Thanksgiving. We are still HOME. Ahhhhhhhh.

I was thinking back to last year and how we have IV's running, and how another year my wonderful Mom's club friends litterally supplied a turkey and fixin's because we were in the hospital. I think back that we have only NOT been in the hospital for November one time in Aiden's life. And I don't think we have ever had a december with out a stay. Who knows, maybe if I was more organized I would look at that data and know it better... but I don't want to know actually. I kind of already know, and that is enough for me.

So we are home.

I am typing this in my cherry pajama's surrounded by legos on the floor, and Aiden and Mason humming the Star wars theme song. I love it!! Both the boys have vicious colds, most likely the remenants of the virus that started this whole drama in the first place. But we can handle a cold! Aiden even has an ear infection.. that was almost delightful to diagnose! NORMAL! Who knew it could just be an ear infection?

ThanksGiving

I feel like I could go on and on and on for what we are thankful for. But today I am going to say one of the things AIDEN is most thankful for today.

Yesterday, Aiden went to the pediatrician for the ear ache. They went and measured him and.... drumroll

HE GREW!! He grew 1/4 of an inch. I am so excited for him! You can't tell yet, because it was such a small smidge but he grew!

We love that he FINALLY has something working for him, and in the way it should. God bless him, it is hard for him.

In other medical news, we are gearing up for a visit to Cincinnati Children's Hospital. Leaving in a few weeks. He has some normal annual stuff scheduled, kidney tests, bone scans, and lots of labs. But we will also be following up with allergy, GI (about the bleed) and then hematology regarding his umm mysterious blood issues.

We will NOT be seeing cardiology, because frankly I think it is a waste of valuable time where we could be having fun. It never amounts to anything, so why go? :) We are rebels. Well actually we are just advocates. Cardiology has given us the 'just keep watching' line, so that is what we are doing. We saw them in the spring, there is no reason to go again. He is ok.

I am nervous about the cincy trip for the first time. I never had a fear of him having a GI bleed on the road, but now I do. Over time I will go back into my la la land and just move past it. But it is a loonngg roadtrip. I will just map out hospitals along the way.

Isn't that what ALL mom's do on their family 'VACATIONS'. I just laughed to myself out loud. Cracking myself up.

"Vacation" Ha.

My camera broke about 3 months ago. Wahhhh.. So I am HOPING to get a new one this week during black friday. I am sorry that the photos are few and far between and are from my cell phone, but soon it will be back to my over abundance of photos littering this page.

Until then, let me do a PHOTO story of exactly what I am thankful for this year. I hope you have a wonderful Thanksgiving, enjoy it and be thankful.. I will update soon... till then enjoy the photos.

Thankful for our family

Thankful for first days of school!

Thankful for sandy toes.

Thankful for boys being boys

Thankful for our LAND OF THE FREE, and the soldiers who fight for it.

Thankful for bright blue eyes

Thankful for new passions

Thankful for a sense of humor

Thankful for Brothers who can be distracted when they need to be

Thankful for nurses and this one especially ((Kristin))

Thankful for leaving ICU and then being able to:

Perfectly fine.

Happy Thanksgiving.. Counting our blessings.

Love, The Hawk Family

Friday, November 19, 2010 6:38 AM CST

all it took was a little silence.

And the tears came flooding. I can't seem to get them to stop. I feel soooo tired. Today I am not strong and brave.

Last night I dreamt in the most vivid way of the horrors of this weekend. Sometimes in dreams, faces are blurred, memories are muffled but last night it was me and him and the visions that I couldn't even take in the night when he had another GI bleed. Those moments just can't sink in during the event.

My skin goes cold and damp just thinking about it. That night I got that wave of nausia and light headedness, knowing I am ready to pass out. I had to be strong for him, because now that he has had two bleeds in 6 months he knew what it was and he looked at me with panic, when I had to look at him with calm.

I leaned up against the bed trying to wipe him and hold his hand, my hero Joey swept him up into the bathroom and wiped him clean. Changed his clothes and got most of the blood off of him, while I choked on my tears and began to frantically grab blankets covered in the blood and get it all up so he wouldn't see it.

I knew he knew what happened, but just to see it there at only 8 years old was so cruel. I had to clean it up so fast. Ripping at the sheets and pillows, throwing them in the corner, turning them so no blood showed at all.

In the bathroom, my love of my life, was there calming our son holding him while I felt like a million bees were buzzing in my ears. I just wanted to panic in the real form. Scream at the top of my lungs. But when you are a mommy, you can't. You must stand strong, smiling in the face of your worst nightmares.

How could this happen again, and why is my mind so mean to make it happen over and over in my dreams?

Is it because I shove it all to another spot? Not ever share or talk about it? Afraid it will make others wince, scare others.. or worse yet, they will look at me indifferently and not even care. The worst reaction to hearing about my sweet child's suffering has been repeated over and over in the past days,

"Oh but isn't that his normal stuff?"

I take pity on them for being numb to suffering. A child's suffering. Nothing is normal about a little boy being held down month after month while needles go into him. Nothing is normal about a child not attending school but instead laying in a hospital bed hooked to monitors, crying with feelings of being different and left out. Nothing normal about this weekend, or any other.

Today I just dump it here. The reason I have this page is to share and use as a therapy. To teach others what this world looks like through the eyes of a 'hospital mom'. Maybe if I tell you all how painful it really is to be silent, then the pain will be gone?

When he was only 5 months old we found him in his crib laying in blood. Our first emergency. When they are babies you have less need to keep it together, in your mind you think they don't know. SO I ran screaming looking for our phone to call 911. I kept saying our adress was a "green door". I didn't know it. I choked into the phone knowing they were coming from only 2 blocks away but begging them to hurry. No mother should beg this way.

In the other room. A baby's room, covered in sweet little clouds and blue bugs and yellow soft baby's rug, stood my brave husband. Quiet and strong he wiped his baby clean. Wiped all evidence of blood from his sweet little face. He sang to him as he laid him on his changing table, putting him in a new sleeper, the wet one full of horrors in the trashcan, never to be seen again.

The screams in my head stopped for a moment while I saw this sight. The love of a father, pushing back his own devastation to sooth a cooing baby.

At 8 years old, how did he do it again? How did he carry that brave boy into the bathroom and wipe him clean again? Tickling him, holding him, talking about star wars and baseball, reminding him there are places outside of this hell. While I watched in awe grabbing blankets and hiding all evidence.

If ever there was a miracle from God it was the gift of my husband. The gift of the bravest most compassionate loving father ever. Never once to lose his cool in the face of the worst.. but instead bring a peace and calm that I am not sure I have ever felt.

This is for me. My day to let you know that at 5 months old or at 8 year old... this will never be normal. This will never get easier. Others may be numb or tired to hear it... but I will never ever let this be something I consider normal.

We will one day have a healing of this little sick body and he will have that life that we desire for him. Until then I will covet his health I will pray for his pain to stop and BELIEVE that it will happen.

Most days I seem strong... but today I AM strong because I shared my real heart. My real sadness that I feel.

never become numb to this please.. never

Our family

My love

Strongest man I know, sleeping over his child. I love Joey Hawk.

Tuesday, November 16, 2010 3:15 PM CST

Aiden is home.

We are done with that hospital stay. Finished.

He came home with his port IV accessed so we can set up home nurse/health. We are just making sure he doesn't have a dysauotonomia flare. If he doesn't and can sail through this then we get to take the IV out and be done.

This weekend was a nightmare on so many levels, but as we were leaving the hospital I litterally just took a second to say, We are leaving. We. All of us together. It is a gift. I will not take for granted that he comes home with us.

I am going to now slip into hermit-hood and just catch up with some healing.

I will update when I hear from more doctors. I am so thankful. REALLY thankful for the love and support. So many people who just take a moment to say, "I am praying". It means a lot to us. Aiden has been reading the guestbook and it makes him smile too.

We love you guys. We have survived another trauma, another punch to the gut and we are ok. God is so good.

Hugs your loved ones, and make today special.

Love, Lisa

Monday, November 15, 2010 11:37 AM CST
He is done. He is good. The scope revealed his esophogus is a mess. Thickened and swollen. It makes for the motility to be bad so things get stuck and ulcered. It looks like his eos is back.. everywhere. I am waiting to hear from cincinnati and see what we will do. For now I don't care. He is ok and sleeping and I just want to go be with him.

thank you for praying.

Isiah 40:31

Love lisa

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

Tuesday 1030

Aiden is in the or. He is getting fully intabated due to his dysautonomia. I'm scared and hate this. Will update when he is out.

Lisa

Tuesday AM

while we wait for his procedure, I have some deep thoughts to share. Last night Aiden was finally heplocked (IV's were temporarily stopped). We both got really slap happy and were acting silly. Aiden showed his nurse how he can do his growth hormone shot, she was amazed and just sat in awe.

Next we went on what Aiden called "Mission impossible". To find the scale with the measuring stick for heigth. He is so exciting and hopeful he has grown some. As we walked up and down the halls, Aiden was high fiving nurses he knows and talking about how he hoped he had grown some. I just couldn't get over his real JOY.

We spent the evening playing connect four and doing silly videos where he danced and sang.

All in his hospital room.

What is so remarkable to me is how satisified and how pleased Aiden is in all situations. It is that scripture about being joyful in all things. That doesn't mean you can't cry like a baby in your coffee, or when you have a bad day, but then, find some joy... it is what we desire. Our sadness comes because life takes that joy with things like GI bleeds and hospitals.. but we are to try to create that joy as best as we can.

I see so many kids always SO disatisified with everything.

"I want more. I want this. Thats not fair. They have more or better than me."

We just can't let our children look at the world with those eyes. Someone will always have more, and there will always be something you will covet. But the true gift from God is having satisfaction and peace in even the bad days.

Don't wait until something tragic like this type of illness occurs to teach your child that life is what we make of it. I just want so bad to prevent others from missing out on what is amazing and beautiful and right there in front of their eyes.

I have so many precious friends who have children currently in the hospital. Been there for weeks/months/years. Their children in pain. And even in their pain, I look at Olivia and Sawyer and so many others, they smile and shine the love of God as they fight to get better. Fight to just make it back to their homes. I am in awe of these children.

Just in awe.

Last night I video taped some of his crazy dancing. Here is just one.

Note: in a hospital room, not eating because he is going under anesthesia the next morning... and this is what he does.

Sometimes when life throws you lemons and manure you have to get up and dance in it.

Love Lisa,

Proud parent of one brave child.

the medical update will come soon.. keep your eyes peeled. Just waiting.

Hug those kids of yours.. and make today a special day.

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

Monday 12:35 update

Aiden is actually feeling great. That is first and foremost important to share.

So we found out Aiden was indeed getting scoped this morning, but then once we got down to procedure pre-op they realized he can't have the normal sedation due to problems in the past. They rescheduled for him in the Am with an anesthesiologist.

This is not bad news! infact I am pleased for multiple reasons, 1) he is safer. 2) our GI docs in Ohio are calling to speak with the local ones. This makes for a good and safe plan. I am very relieved and content knowing there is good communication all around the board.

With all of that said this has been really crazy. I am now just wanting to go home and pretend this never happened. Hopefully after the scope we will go home tomorrow. I don't know. I do know he is feeling ok and wants to be at school. of course we will have to lay low for a few more days for that.

I had a 'moment' this morning in the cafeteria when the coffee wasn't ready. honestly the cry felt good. I am just sad that we are here. There was all of these hospital staff coming in. They were showered and fresh. They looked happy and smiling. They smile sweetly at me as I was in the cafeteria with my socks and boxer short and sweatshirt with my greasy hair in a pony tail, holding an empty coffee cup, just looking pathetic. I felt like the cafeteria is my kitchen and aiden's hospital room was my house. It feels so weird to be in such a private moment, just waking up and getting your coffee and then have other unfamiliar faces pass you by.

I see other families that look dishoveled and stressed, I immediatly relate to them, the ones I don't get are the fancy dressed mom's. I always wonder if they do their make up and get on fancy clothes by the bedside or are they just here visiting. Who are these fancy hospital moms? I know not me.

SO anyway, these are my deep thoughts for the day.

I am sure I will update later.

Lisa

Sunday, November 14, 2010 2:27 PM CST

Monday Am update. We are waiting. We are really hoping that GI didn't do a 'drive by' and sneak in while we were sleeping. This is my number one complaint with this group. (yes I know if you have been following my page for the past 7 years you probably have never heard me openly complain about a doctor it is sort of a 'policy' of mine on this page. But today I am breaking it) They do their rounds at outragous hours. Like 4 in the AM. Whisper into the room, you are in a coma passed out you miss them. I remember when Aiden was a tiny infant we were being told he needed a liver transplant, and he was in complete organ failure. I was 26 years old, I didn't know anything about this, and they would do these same 4 Am visits and we would never speak to them. I would have to have our nurses wake us up so we can sit in the dark waiting just to talk to our child's doctor. I mean it isn't like we are here for a broken finger.. this is life and death. So I feel the right to complain.

Soooo 8 years later and nothing has changed they still do rounds at 4 AM. We are just hoping they didn't skip us this morning, Why?? Because Aiden is fasting. Nothing to eat or drink in the hopes they scope him. Sigh.

I only post this because I know there are other families that read Aiden's page that are new to this path of being a 'hospital mom', and I want to remind you that it isn't OK. You should be able to speak to your child's doctors have eye contact and feel as if you understand all the communication. This is your right and should be the only thing you accept as a parent.

OK now that my Advocating 101 class is over, I will say I LOVE Aiden's normal doctors. We have an amazing group of nephrologists, endocrine, hepatologist, nuerologist, and pediatricians and they all would give the shirt off their back for my child. We are so thankful for them.

So while we are waiting, Aiden is feeling great. Slap happy wild. Messing with nurses. Of course he is still cute and little but soon they nurses won't be laughing when he fakes that they have hurt him.. I forsee as he grows and gets older they won't think it is so "cute" as he cries out in (fake) pain when they touch him. I just sit and watch it is a great indicator of the staff. Of course they are all on to his antics by now and think he is hilarious. Me, I am not so sure. I don't usually find it funny when he plays these practical jokes on me. But I give him some grace knowing the poor kid has nothing else to do. He has learned to laugh. His friends are in school, talking at lunches, playing at PE and recess, talking about Thanksgiving break, vacations, etc. He sits in a hospital, month after month, year after year. The nurses are his friends. I love them for that.

His pediatrican has come by since I began typing this update. We have a plan. She is paging GI to see what they want to do, but since he is stable and the bacteria cultures are so far negative we will stop IV antibiotics at noon. Then fluids and wait to see if his dysautonomia flares up. If he is stable in the Am with normal (his normal) labs then we can be discharged. They just don't want him in the hosiptal with RSV and other viruses floating the floors.

She is now paging them, so I will update once I hear the verdict. Either way, I just am so thankful he is perky. I mentioned to his doctor that I was nervous about travel and being in the country driving in a few weeks knowing for some reason he is bleeding. She looked at me oddly and said, "take away what happened this weekend I am sure you would be nervous anyway just traveling with all of the other stuff he has going on." We had a moment where our brains were not connecting and I realized that the dysautonomia is still scarier for them. For me I have reached a fair level of denial and always forget how unstable he is. They continually call him fragile and I burst with laughter.. but that is just my coping mechanism. I know the truth. I know how scary it all is, how scary his diagnosis is. How scary it is that his body just doesn't know how work right.

We just choose to not be scared.

Anyway.. keep praying.

love Lisa

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

Ok just seeing the previous update on this page makes me sick. I am pushing it to the journal history. If you care to know, just click the journal history. Otherwise I will summerize here.

Yesterday Aiden was admitted with high fever, treated for possible sepsis, and then in the middle of the night with out any previous vomiting Aiden vomited blood. A lot.

So now here we are Sunday afternoon and Aiden is very stable. He has had a mostly good day. A few moments his fever and nausia returned, but they pushed zofran through the IV and it immedialty remedied it. Phew. I was litterally hiding on the 'couch/bed' hoping to NOT ever catch a glimpse of his throw up again.

I called my friend Cheryl this morning, who by the grace of God is able to comfort me, when she herself has been through so much more. Her and I had a non-lucid moment when I said, "it isn't post traumatic stress it is 'current traumatic stress'". Pretty much the description of this hospital stay.

We have raised the bar for any potential therapist I might have in the future.

ANyway, We are happy to report that Aiden is doing so well that we are actually a tad bored. We are sooooo ever thankful for him and the fact he has dodged so many bullets and even if he gets hit by the bullets he seems to be wearing special vests to protect him. I know it is all God. God and miracles and prayer and just this insane path we seem to be on.

I am always reminded, shortly after I sink into a moment where I think our life is so hard and we are so pitiful, that although my sweet boy has suffered for so much of his life, there are others who always have it worse. Ran into a hospital friend and she shared the news that her daughter is now moving into hopsice, their new goal is just to make it home in peace.

I sat on the bed in the room and just wept for her, then ran to my boy and told him how much I love him. Over and over.

I just can't afford to take it for granted.

I have no earthly idea what is wrong with Aiden. I mean as far as I am concernd Upper GI bleeds are bad. bad bad. But that is only because we have delt with this during end stage liver failure, then again during septic shock. Our track record isn't good. plus it doesn't help when our darling nurse says, "This is BAD!" I love our nurses! :)

So we are HOPING they chose to scope Aiden. I don't have a ton of faith in this local GI team. Sorry if you are reading this and you looove them, I just don't. It's ok. I am not the first, and won't be the last. I do know though, they are perfectly capable of scoping him and telling us what they think. It is a lot cheaper than flying to Ohio to do this. But we will do what we have to do. I know they are usually a little uncomfortable with Aiden due to his other 'issues'. (rolling eyes)

Anyhoo...

At this point. We are all confused. I feel like that is the one word to describe our medical journey over the past 5 year.. confusing. This all is so strange. It isn't supposed to happen like this. His liver is rock solid and his last scope showed his GI disease was cured, gone.

We will get down to the bottom of it. We have gotten several tests for bacterias back and all were negative. More are pending.

Thank you soo much for praying and supporting us. I seriously have sat here thinking.. wow 8 years now some of you have been faithfully praying. I know we have had so many miracles and blessings and more to come.. I just want to thank you.

Gathering our strength, gearing up for more battle.

Team Aiden

Saturday, November 13, 2010 10:46 AM CST
*WARNING: GRAPHIC! *

Sunday 8:00 Am update

the longest night in many years. I have my lap top now so I am able to share a tad more, but unfortunatly we don't know what happened. This stuff doesn't just happen. No warning, no idea.. this was supposed to be a fluke from last time and freak incident.

If you don't remember or don't know, Aiden was very sick in the spring and vomitted a very large amount of blood for they said was a tear from wretching so hard. I promised Aiden, It would never ever happen again. Because it should have never ever happened again.

Last night with his fever he was moaning and feeling bad. It was about 12:00 midnight. I sat on the end of his bed, and went to get him some new bedding, as I came back in he was vomiting. He had his hand over his mouth which made the vomit.. which was blood spray everywhere. Covering himself, the bed, stuffed animals etc. It was honestly one of the most traumatic moments I have experienced (well since the last time). He vomitted over 2 quarts of what looked like pure blood, but I am sure it was also other fluid as well. Needless to say one of my worst nightmares has been relived again.

I never thought this could happen again, why did it happen!?

I of course like any mom panicked and then almost fainted. This has been unbelieveable.

We have been watching Blood pressures and checking labs, all is ok he is stable. If anything changes we head to the ICU. I am hoping we don't because we have Nurse Kristin (you know THE nurse who saved his life LAST time this happened) She so happened to be his nurse today. And yes, she normally doesn't work weekends. Thank you God.

I am honestly uneasy because there is no reason why this should be happening. Unless he has an underlying diagnosis we are missing. They are doing more tests today and possibly scope him. If they chose to not scope him here, we wil head to cincinnatti and see what they want to do. 2 major GI bleeds in 6 months is NOT normal, or ok.

He has a low grade fever brewing again. I want this to end. I just want him feeling better. I didn't sleep last night as I couldn't stop watching him breath and watching the Blood pressure machine. Joey slept like a baby. I don't know how men do that. Just sleep when they are stressed. My mommy genes wouldn't even let me barely blink for a moment.

I am asking for prayers as we are still in a very unsure situation. I am so thankful to our dear friends who have taken Mason into their home so he is totally unaware that anything awful has happened. He has is having the best time with his 'other' family. Thank you so much.

I will be updating more later, just for now I have to get back to him and see what is next. Thank you so much for your prayers and support. Pray for him to feel the love and know that we all think he is the bravest boy in the universe.

Lisa

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

Sun 1 am

Aiden has vomitied a tremendous amount of blood. We don't know why. We know that he has been covered by antibiotics since we arrived but we don't know what is going on. He is sleepinng now we r watching his pressures to make sure they don't drop. If they do he will be moved to icu. I'm on my cell still and so don't have much more time to do details. And frankly who need more detials than that?

We r just sitting here joey and I silence. Nothing j0but just staring and waiting. It feels like the caln before the storm. We are both terrified of last time. Please just pray.

I'm hoping it is done. No more blood.

************************

10:45 am update previous

Using my cell to update, so bear with me. Aiden is in the ER right now. Within an hour he went from being totally fine to having a 103 fever. He is being admitted. He is feeling bad but still managing a smile here and there. They are being very agressive and doing cultures to make sure he isn't having a bacterial blood infection like the spring. (Sepsis) it could be the flu but he has been on tamiflu for prevention all week because Mason has a fever on Monday.

I'm totally freaked out. Because this is so much like the spring. I guess post traumtic. I keep telling him how much I love him. Have I taken it for granted again? I just know how close he came last time and I can't ever see him go through that again. My heart feels so sad today was a very special day of course for him. His best friend and him were going to have a fake sleep pver. Everything but the sleep and the over part. He is now sleeping in a hosptial. He is so dissapointed.

I will update later. Labs and ivs will start in a moment. Pray for our sweet boy

Lisa

Monday, November 1, 2010 2:30 PM CDT

Have I ever told you how much I just love my boys? Well I just want to share specifically how PROUD I am of Aiden this week.

We have been keeping a little 'secret' from everyone. Well most everyone. There has been a few who knew about it, but per Aiden's request we have chose to keep this secret. However he has busted it wide open and has just about told the world about his 'secret'.

First let me say I know some people here have been following Aiden's story for years now and have noticed that it becomes a lot less detailed and more censored in some of the experiences we have shared. I guess this is part of the evolution of being a mom who uses caringbridge as a tool to share her child's medical journey. I have learned a few things over the years. I have gone from being a mommy to an infant who was sick, to a child. An indvidual with a voice. I have learned that this is HIS illness, his body, and really honestly.. not just MY story as his mommy.

Most people aren't aware of this, but about 2 years ago I began asking him which photos he approved and what he would like me to leave out of the updates. Even though he is just a little kid, I recognize this is HIS disease, his path.. not just mine and Joey's as his parents. He comes first.

For the most part Aiden is very cognizant of his page and the things we share. Sometimes he will be in the hospital or struggling and REQUEST that I share a photo or a story because (his words) "it might help another child."

gulp.

So here we are, always asking permission and giving him POWER to this life that he often is powerLESS over. And so over the last year we have been planning a medical treatment for him that has been honestly one of the biggest changes for him, and honored his request to remain private about it.

I can't say it isn't hard, because I truthfully want prayer over it.. but it has been sort of fun to know that Aiden has earned this and has relished in the fact he has control over what we share and what others know.

So why am I sharing it now?

Well simply put.. HE asked ME to share it!

So. About a year ago, Aiden's doctors in Cincinatti adressed a very obvious concern for Aiden and mentioned it in the most beautiful way possible.

Aiden hasn't grown. At all. Not in years. He has a complete failure of growth and has stopped growing just a hair over 3 years ago. With his very precarious health, his heigth wasn't on the forefront of ANYONE's mind. Well.. I take that back. It was on the forefront of someones.. on Aiden's.

It has been so hard. For years now people ask him, "How old are you?" "Wow you LOOK like you are 5!!" they say the comments on how short he is.. and kids, well we ALL know kids can be SOOO mean.

If you know Aiden in person you know I am not exagerating when I share with you how he litterally pushed that chin up and never lets it get to him, at least on the outside. But last spring as we stood in the hospital in Ohio and Aiden took another nose dive OFF the growth charts, his very sweet GI doctor said these breathtaking words:

"Aiden is SO much more stable. We need to redirect our focus from saving his life.. to quality of life."

It was like we had graduated!!!

The critical dangers seemed to be passing with more understanding of his disease, and now it was time to make sure he was having a good life too.

The process to look into growth and growth hormone testing began then. We had been followed by an endocrinologist here in Florida AND in Ohio, and it was a frightening step. They ran some tests BUT we figured the true talks for growth hormone therapy wouldn't begin till he was closer to his pre-teens. Aiden had some testing done and we were shocked and sad to find that he was becoming permanently
stunted.

(ok let me interject.. I am sure you are wondering.. WHY is this kid not growing?? Answer: Because OF course the poor kid has every stinking side effect to every medication he takes. He has won yet another lottery with the path he is on with transplant.. and a life time of prednisone has stunted his growth. It plain STINKS! But that is another post for another day)

His X rays of his hands showed that he had lost all of the growth over the past years and his growth plate was closing. My heart sunk as did his father's I couldn't believe how unlucky he was... our poor baby was already getting bully remarks from kids and now we were being told he will never get those 3 years of growth back. We HAVE to begin therapy now.

That was hump number one.

DO you remember me sharing with you 2 months ago how Aiden went to the hospital for an infusion and testing? Then suddenly he crashed in the middle of it, and then was admitted? This was a growth stimulation test. Aiden reacted very badly, just as his doctors feared to the stimulation. It was so scary for us and I wanted to bad to ask for prayers, but I just knew Aiden didn't want anyone to know. I found comfort knowing that ya'll are always praying for him and details weren't even neccesary. God knows Aiden's needs.

It became more drama (See even when I dont' share it with you, we have plenty of drama! lol) and then our insurance denied Aiden's treatments because the results of the testing showed he may never react properly to the growth hormones, that still even after all of this.. he may not grow.

It has honestly been a constant parenting lesson with this whole thing, I KNOW Aiden... but I also know there are places in him, I don't know so well. Secret feelings. Although he tells people, "I don't care if they make fun of me cause I'm short".. I never knew if it was how he truely felt.

A few weeks ago, after appeals with insurance, the growth therapy was finally approved and was shipped to my doorstep. Aiden BEGGED for us to give him the shots that very day. Of course I didn't know how, and didn't even know what to do. However, 11 days ago, a nurse showed up in our home and have Joey and Myself the very first lesson on how to inject our son daily with this therapy. It was nerve wracking to say the least. I am a vet tech, I have probably stuck a needle in a dog/cat over 2000 times in my life.. but suddenly this was impossible for me to accomplish.

I was so scared.

Aiden had just come off the 1 1/2 weeks of IV therapy from his dysautonomia, he had reacted terribly in the hospital to the stimulation testing.. and now ME.. I am supposed to stick a needly in my baby's skin and watch him scream?

Well well well... It wasn't gonna happen. Daddy to the rescue, I told HIM it was HIS turn to be the 'bad guy'.

So the nurse comes to the house and to all of our suprise, Aiden is jumping up and down with JOY and EXCITMENT. He ran to the nurse and immedialty said, "CAN i DO IT!!!???" He wanted to inject himself! I refused that imagining Aiden sticking the needle into his own arm and then crying and being traumatized forever. (did I mention I was scared?)

So the moment came, Joey did the very first one and Aiden shoved that arm out.. pinched his own skin, and smiled ear to ear through the entire poke.

FINALLY.. He was going to grow.

He ran over to the spot on the wall where we mark his (non)growth. I took a magic marker and wrote.

"First GH shot." and the date. Praying and praying.. it works. There it was in black and white.. it just has to work.

The very next morning Aiden had baseball practice and he annouces to his teammates, "Hey!! I am getting shots to grow!!" So much for keeping it a secret.

Now everyone who comes over around 8pm at night gets the privledge to see Aiden get his shots. He looooves to show everyone how brave he is. Last sunday during a neighborhood pumpkin carving he decided to freak out our innocent (they have no kids) young neighbors and show them get his shot. They reluctantly went to the kitchen where Aiden began to scream in pain as Joey gave him the injection. I was so confused and our neighbors were HORRIFIED but of course.. Aiden burst out laughing and screamed, "NAhhhhh Just kidding!! I was messing with you!!"

I love this kid.

So he has now REQUESTED all the prayer possible that this works for him. That he can grow. Just last night Aiden actually gave himself his OWN shot. Can you believe it?? I mean I was such a chicken, and here he is 8 years old jamming a needle into his own arm and smiling because he knows it is yet another step to being normal.

I am so relieved to share with you this exciting journey.. I am soo praying that he remains healthy through this, that he has growth, that his brain begins to react normally to this hormone he just doesn't seem to want to give out.

I just love this kid. I really do, I want everything in my fiber to make his childhood as normal and wonderful and then more extrodinary than ever imagined. Keep those prayers up. It is November.. the month he struggles most and now with a whole new medical journey underway.

Thank you so much for always being faithful and praying.

More updates to come..

Go team Aiden!

Tuesday, October 19, 2010 12:52 AM CDT

Today my dear friend's little boy (10 years old) is getting a second chance at life.

He was one of the smallest and youngest ever surviving liver transplant recipients in US when he was transplanted the first time. Only a week or so old. He has been through so much and I just love this child's bravery. He reminds me of Aiden in soo many ways. Not only does he live 'outside the box' but he has severe food allergies, has been unable to go to school, and just lives with a great big smile every day.

His mom and I have been talking about this possible day for so long... so when I saw her say, "He got the call" I just melted into tears.

It has been over 8 years since we got that same call. 8 years. I don't ever take it for granted but sometimes I do shove it to the recesses of my brain. Those times were so different than now.. but they are what made our family exactly the way we are.

When you wait on a list and then your child is placed at the top.... it is that bitter sweet time. You can't really celebrate that they have moved to the 'top' but instead you are horrified that it ever went this way. Being high on a list just means you are sicker than before. It isn't wonderful.. it is terrible. BUT then.. in a blink of an eye a call comes. The terror of the wait changes to excitement and hope. Terror still... but hopeful at the same time.

I was only 26. Joey was only 28. So much to endure at such a young age.

At any age.

The flag that flies on the top of my page is what it is all about.

It reads, "An organ transplant is saving a child's life today".....

8 years with Aiden would have never happened if it wasn't for this miraculous surgery. I am praying this little boy's journey to health with no more suffering has begun today.. again because of the gift from someone else.

We all have an expiration date. I know nothing we want to think about. But for a moment, please share with a loved ones the wishes you have. If you feel led, please think of chosing organ donation. Children are waiting.

But one less today. We love your S. We love you and your beautiful family.

Lisa

Tuesday, October 12, 2010 6:26 AM CDT

Back to school. Our week has begun and it seems so much better than it had been. I was sort of wincing when I updated last, that he was feeling better. On Saturday I thought we might have to start all over.

we are currently working on a plan to go to Cincinnati Children's Hospital. It seems right now we are caught in the web of scheduling and appointments. We were hoping it would be November 15, 16th but just learned his main doctor is out of town. Of course! We pick one week of the year and it always seems to be that way.

Anyway, Aiden is perky and feeling good. He is so happy about being back in school. I love how much he loves school and learning and testing and all of these things I hated as a kid. I think so much of it just says "normal" to him. I know he doesn't actually enjoy testing but he litterally fist pumps in the air and shouts "YES!!" when he gets a scantron sheet. He says, "this is what they do on TV!" he craves normal so badly. He sits and watches so much from the sidelines even things silly like a scantron sheet makes him feel just like the other kids.

So we have a plan for the rest of fall. Same type of thing as we already did. I get to keep the lovely Iv Pole decor for the fall (oh joy) so we can manage his health from home. Hospitals are full of sick people, Aiden isn't sick he is just fluid challenged. LOL (bad joke). I mean how lucky are we that the main medicine this child needs to live a near normal life is WATER? It could be so much worse. All the toxic drugs that have coursed through little child's veins over the years and Iv fluids are what keeps him going. That has to be a positive! ~We always like to look on the bright side :) ~

A friend on facebook called Aiden's IV pole his "skinny dance partner" I loved that. It made us laugh out loud. Now Aiden twirls the pole like he is doing the waltz. Pretty funny. So the Skinny dance partner will remain, but in a corner until it is needed.

I wanted to thank you guys so much for supporting us through the past week. It was HARD. I mean it really took our joy down a notch. Thank you for the meals over the weekend it was greatly appreciated. I got a major migraine on Sunday and so when our friend Susan showed up with a delicious BBQ dinner it was like medicine for the soul. We love you guys. Thank you for not giving up on this sweet child. God is so good! He has already had so many victories with our family, and with Aiden's health. I hope this fall we are blessed with him having no more bumps, but if they bumps come I know God still reigns and heals.

With love and hope!

The Hawk family!

Saturday, October 9, 2010 6:50 AM CDT

I have some great news. It took longer than usual, but we have finally got our little Aiden back on track!

He feels great and is off the fluids.

YAY!!!!

It has been such a difficult week for him and all of us but I am glad we are ending it now. I hope that he won't have to endure this again for a long time (or ever) but we do have a very strong home health plan in place if we have to.

Now it is time for us to just recoup from all this drama.

I got an email from our transplant coordinator in Ohio, she said his transplant/ hepatologist was JUST asking about Aiden. She said, "We know this is the time of year he struggles". I got goosebumps because I had yet to tell them we were 'struggling'.

I don't understand WHY. ANd I just have to stop trying to figure that out. I just know that even though there is no cure for this we at least know we have some control.

I just have to live for each day. And today it is a good day.

THANK YOU for all your prayers and support. I just can't even tell you what it means that people are still reading his story. Your love and support astonish me and I just love you guys.

Keep praying! Hoping this was the last time for a long time.

Love,
The Hawk Family.
xo

Tuesday Night

Tuesday:

Is it only tuesday? Have we ONLY been doing this since last thursday? It feels like ages.

We hep locked Aiden this morning, with the hopes of being done with fluids today and tonight and then be de-accessed tomorrow.. then back to school on Thursday.

No such luck.

Aiden was good today. Not great.. but by mid day he was furiously thirsty.. gulping and gasping while drinking, then an hour later he began to become extreemly sick and pale like a white sheet of paper. He uses a number system to describe how he feels. 0 is perfect and 10 is awful. Usually we rush to a hospital at 5 or 6.... today he said 6.

I didn't have to rush to a hospital although I did have to rush to home to get meds in his FAST and then get on the phone with doctors and pharmacies to get more supplies out to the house. We need more bags of fluids and meds, and more lines, and flushes and all the junk that goes with home health. LOTS of junk.

Did I mention we live in a 980 square foot house? It seems MUCH smaller with mattresses on floors and IV poles and boxes of medical supplies.

Why Mattress on floor? Well simply because Aiden normally sleeps on the top bunk of their tiny room. He can't be up there with IV's running. Honestly I don't even like to sleeping in the next room as me. He usually just sleeps in my bed and poor Joey on couches, Mason on floors and my mother in law is in town helping.

Sigh.

I am trying so hard to be as normal as possible but when I see him so sick and not able to really bounce back I just get this knot in my throat and pit in my stomach. Is this what I JUST posted about last week? It is. The fall cycle that we have begun.

His pediatrician said to me on the phone, "I woke up this morning the weather was so cool, so fall like and I immediatly thought 'Aiden will be a mess today'". Her words. The truth.

I just don't even get it, but he can't regulate tempature of his own body and the barometric pressure effects his blood pressures.. so we are assuming that swings him out of control. How dumb does that actually sound?

Anyway... I AM disheartened because I saw an 'end' in sight this morning but it was more hopeful than it was something I acutally thought was coming. I could tell he wasn't right. It is so hard.

I just love him so much. I love everything about my sweet son. I love how he is funny and confident and brave and strong. I love how he is sometimes borderline innapropriate with medical information and details he should be 'too young' to know. I love how he has compassion and how if a kid falls down... with out being prompted he stops dead in his tracks and runs to them asking if he can help. I love how he had wanted SOOO bad to be baptised this past weekend, how he thought that was a wonderful dream come true.

it isn't fair.

That is all I have to say right now. It just isn't fair.

Yesterday with his IV strapped onto his back he stood in the back yard pondering what to do. Shoudl he turn around and lay down? Instead he stood there staring at the life moving in the back yard.

I caught this photo of him standing and thinking. A moment passed and he turned around and asked me the strangest question.

Him: "How long do other kids play for?"

Me: "I don't know 10 minutes or so?" I just threw out a low number wondering what this was turning into.

Him: "I am going to swing"

Pale and tired he walks to the swingset. He musters a smile. I imagine he must be in some pain where the needle and tape have sat on his chest above his heart for days, and he begins to swing.

I tell him how happy I was for him, and sort of walked off not trying to make a big deal. I knew he was working so hard to achieve something.

He got off the swing and stood in the yard. Watched his daddy and brother play. He just stood there. Then a few moments pass.

Him: "It has been over 10 minutes. See I can do it too."

And he asked me to take the back pack off and went back inside to lay down.

THAT is my fighter.

My brave warrior.

I love him.

I hurt for him.

But I am so thankful he has this amazing spirit. He will win in life. He may never be a perfectly healthy child.. but his spirit has already supassed every dream I had for him when he was just born.

Keep praying. We have 48 hours more of this.

I will keep updating.

Love, Lisa

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

Monday Oct 4th Update

So it has been on and off good and bad over the weekend. Good when ON fluids.. bad when off. We try to test him to see if he can remain stable and it didn't work. This morning the home nurse hep-locked him and I plan on keeping him off until this evening. Possibly one more night of fluids and be done. I am not even sure, we will just watch him. The last thing we want to do is de-access him and stop and then bam he has to start all over. So much trauma for him.

He is in great spirits and is really feeling ok. I am happy for him that he has been home instead of the hospital. It is honestly a whole bunch easier on all of us. Cheaper, we sleep better, I get to see Mason and we can resume more normal. He also has more privacy he can feel free to be alone in his room vs having strangers touching him, looking at him, talking about him all day and night like when we are in.

So.. it is all good. Stable and calm. I will update when and if anything changes. Thank you for your prayers and kind words.

Love- Lisa

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

Sat. previous update:

Aiden has had a crummy week. I feel like saying "the usual" happened. And just stopping there. Second verse same as the first.

For 5 years.

I have a friend whose daughter is now being diagnosed with Dysautonomia. Some of you are probably very familiar with this precious family, little Emerson. Eme's mom and I have spent the entire half of a day corresponding about symptoms and things and mysteries being solved.. but with what? Just more names. It is so bizzare to me to have someone else be in this world. I have been so loney and yet I WANT it to stay that way. I don't want any other mother living what it feels like to have a child with dysautonomia. And not THIS weird form of dysautonomia.

It is so frightening in the beginning espeically since everything seems so dire. 3 years ago we were told Aiden was progressive. I vissioned wheelchairs and hospital beds. It happens all the time to these children.. I just couldn't accept it for mine. It is a terrible awful diagnosis to be told EVERYTHING is broken. But not from each individual organ or issue.. but from the brain. The engine of our bodies. No one understands the brain. How can we fix it?

Well here we are.. Aiden didn't get admitted but instead with cajoling from his phenominal pediatrician he chose to do his IV's at home. HOME. It feels sooo wrong! Ok I know you were expecting me to say 'good' or something else. But Having that dang IV pole back in my living room. UGH! The metal hat rack? Yuck. Just doesn't go with my french country decor. lol

Anyway.. there is no failure in this.. this is just us managing his care. It is in no way a step back. I am still feeling victorius. We have come so far. Even his dear home health nurse, who has known us like family, said, 'He has had a great summer!" Yes. yes he did! Amen.

So we have the IV's and the boxes and the cutest little sharps container in the world. It is so tiny Aiden and I just ooohhhed and Awwwwed over it. I know it seems umm...'warped.' I will accept that. We ARE warped, But I am going to take a photo of this adorable sharps box and someone out there will comment and let me know they think it is cute too. C'mon I need a warped nurse. Throw me a bone.

cute huh?

Anyway... So I have already gotten the "what happened?" or the "why now?" question and I just have NO idea. Maybe it was a lack of sleep. Or baseball. Or the cooler weather that came in. Maybe Aiden's body thinks it is November the time of the year he ALWAYS does this. I dunno. I could just copy and paste any random update from the past several years and plug it in. I don't know why. I just don't.

I know that my heart hurts a lot. I know that I feel desperatly lonely. If I think about it I can be JUST as horrified and sad and defeated as ever... But HE isn't. Aiden is strong and brave. He is smiling and laughing. He is moving on with out a worry. So why would I do anything other than that?

Yesterday while I spent all this time at the hospital and setting up home nursing, it was Haley's 5 year 'anniversary' from when she left us on Earth and joined the angels that worked so hard to protect her. Haley's mom and I texted back and forth from the hospital waiting areas. Tear streamed down my face, as I almost litterally heard the voice of Haley telling me to "Suck it up." And I did. I am honored to still have this child with me to set up home nurses. I choose to never take this for granted.

Lonely is just a word. I will just ignore it for the time being. I know Aiden feels more lonely than me.. This isn't MY illness this is HIS. If he is couragous enough to smile and laugh and strap that IV bag (with lines and needles attached to his chest,) onto his back and ride his bike.. I better be mature enough to stop sulking and run beside him and laugh and enjoy the moments.

I will have my 34 year old temper tantrum later. For now.. this is ok. Infact it is good. We are home. He can cuddle his dog and play legos and have visits from his Nana and Babu or any friends that might want to stop by. It is home it is ok.

Sigh.

Anyway. All together now... 'Dysautonomia sucks.'

We will get through this hump. Even if to find another hump around the corner.. we will get through that one too. We just have to.

Believing in things I just don't get, but knowing it is true..

Lisa

Monday, September 13, 2010 12:30 AM CDT

I know I have been semi sporadic with my updates this past few months. I have been having so many things swirl around my head, trying to grasp what is real and what isn't. Still honestly reeling from our spring sepsis. It hasn't been easy to erase from my head.

It is "fall" (so they say, even though it was 96 degrees today.) I feel like I am on a ride that all the other mom's are riding, getting kids ready for schools, meet the teacher, signing up for baseball, making plans for the fall... the same ride as everyone else, except my ticket is different. I don't feel like I belong on this ride. I keep having to get off in the middle and change back to the old ride. I am on the imitation ride one that seems like the other one but everything on my ride is more difficult and more of an effort.

It isn't a complaint but rather a reflection of just how it is to be a mommy of a CHRONICALLY sick child. There is no end date to this, there is no 'cure'. There has been healing but chronic is that silent invisible monster that just looms in the corner waiting to make his prescence known.

Last week's hospitalization was just a sucker punch to the gut. It was fast and not very traumatic. But instead it was mundane and very typical. The normal-ness of Aiden's hospital admissions sometimes sting so much because it just sneaks up on you reminding you how UN-normal, OUR normal is.

Are you still with me?

School has been exciting and wonderful and we have a fabulous teacher who just has really 'got' the spirit of Aiden. She emailed me telling me how much joy it brought her to see Aiden so "HAPPY" at a class picnic and just the excitement when they decided to play Tug o' war. Aiden exlaimed, 'I NEVER DID THAT BEFORE!'... Big teethy grin you just can't erase from your mind.

At this picnic I was informed by one of the class mom's how relieved they were when they finally met Aiden. I had written an informative note home to let them know why the little boy in the class was leaving early and arriving late. I just briefly shared some information and included his link to this page.

It seems with out my knowledge Aiden decided to 'share' somethings too. During a little sharing time Aiden showed the class his scars, port and heart monitor. He told me that some kids looked at it curiously and some smiled and some hid their eyes. He was feeling very very proud at that moment, but the poor kids must have not known what to expect. I was so thankful his classmates are so nice and respectful because that was a bold moment for our little Aiden.

So how do I NOT acknoweldge that we are a different kind of 'normal' than the other families? Aiden is totally comfortable with the knowing. Why do I try So hard to catagorize our family? I have been doing this for 8 years now. Is he sick? Is he Healthy? No he is just AIDEN.

The real thing is, it is the fall. Last fall was terrible. Just terrible. Aiden missed nearly 3 months of school due to his dysautonomia. He was homebound the entire fall. He had IV's in the house, admissions and just a lot of feeling terrible. I feel like we are just looming back there again.

"Fear not!" This is the most common phrase in the Bible. Did you know that? God must have known He really needed to get that point across because it is so easy to forget.

It makes me feel better to admit to you all how hard it has been just getting aiden into the 'normal' things that his friends are doing. It makes me feel some relief sharing with you the honesty that sometimes this is very difficult. It takes an everyday faith that I just don't feel equipped for. I keep it a secret under my smile, but believe me below that thin layer is a lot of feelings that I don't often share.

I want So bad this fall to be ok.
I want So bad this fall for him to just NOT get admitted.
I want so bad to say the last sentence with out wincing and feeling stupid for thinking we could have a fall with out a hospital.
I want so bad to be like Aiden where we share our scars and pain so openly like a badge of victory.

We are so blessed beyond belief. I am so thankful I have the oppertunity to ponder these thoughts. I am so glad he is with us and we are still on this ride of chronic illness. We came so close just months ago. I don't want off... I just need to regroup and strengthen up for any battles we may face this upcoming few months.

We are having our 3rd annual Team Aiden Yard sale this Saturday.

I am blown away by the love and support our church family, friends, and neighbors are showing us again this year. I feel like so many people who don't even really know us are saying to us ,'we care Aiden goes through so much'. It chokes me up to think of others caring. I know no one has a perfect life. Everyone has something. I am feeling so thankful that others care and support us.

If you want to know more about the Yard sale you can email me

rolexh@aol.com

We are accepting donations on Friday for gently used (nothing yucky) items to sell. We have a sign up list for people who would like to do a shift and sell things at the sale. I am hoping it is a success, but already know it will be!

This will help pay for Aiden's upcoming visit to Cincinnati and Toledo hospitals.

The yard sale is at our house

850 29th Avenue North
St. Pete

Saturday from 8:00 - 2:00?? Or whenever.

God bless!! thank u sooo much!

Go Team Aiden.

God bless you,

Lisa Hawk
Proud mommy to Aiden the brave.

(just thought I would post this video of Aiden and Mason swimming last year at my parent's house. It always makes me smile. Pause the playlist/music on my page before you hit play to watch this.. and enjoy! )

Friday, September 3, 2010 3:00 PM CDT

well we are HOME. Thank Goodness!

It was a crazy 30 hours but it ended on a good note. I spoke to the endocrinologist and she was very shocked that Aiden's glucose bottomed out so much after receiving a medication that it's sole purpose is to make your glucose climb high.

This whole thing wasn't done so we could find out about Aiden's dysauontomia, but maybe.. just maybe, we might have some more information on WHY and WHAT happens when Aiden has a crisis.

We know it is very similar and treated the same way as diabetes insipidus, and Addison's disease.. Both of these diseases he doesn't have.. but he MIMICS them during his episodes. So yesterday it was yet another piece of evidence that his adrenal and 'flight or fight' response is totally confused and broken.

Maybe there is a link to his pituitary gland? I dunno know. heck, I barely even know WHERE a pituitary gland is located. So this is all way over my head.

The endocrinologist said, that the results from the stimulation test might actually tell us more information about his dysautonomia than we even thought. It is really just so crazy.

It is hard to have 'hope' that we may be a step closer to just understanding this a little better. But if in the end we learn nothing more and just ADD questions, we are ok with that too. It is all going to be ok.

I have a hard time because it just reminds me how a tiny amount of stress can really just flip Aiden into a crisis. I just remind myself, we must not live in fear. Chin up and press on! Fear can be debilitating. It can ruin days that were perfectly peaceful. I won't let that happen.

Another doctor came in today and in a sweet way, she told Aiden that he had taught her more than the medical books. You can never expect that ALL children will behave the way they should. Aiden has shown them how to think from a new angle and not take for granted that you must KNOW your patient. I am so thankful to God for the doctors we have helping our son.

In a whole new note I haven't told you any good Joey stories lately. I have a good one for you that really requires my camera to be working.

About two weeks ago, during Joey's work he met a butterfly 'farmer'. (What EXACTLY does that mean anyway??) Since my quirky husband loves things like this, I knew it wasn't long before he would become obsessed.

Joey went into our flower bed found these tiny white specks that were actually monarch eggs, placed them in a big muddy pot filled with milkweed, placed THAT into a big plastic Tupperware, pulled a screen off of one of my windows, and then stuck it in my living room. When I saw this 'butterfly garden' in my living room, I was horrified. BUT the boys (Joey included) thought this was SO much fun, so I just smiled and nodded.

A week goes by, the white specks are now gross larva. "Look mommy!! Aren't they cute!?" As Mason shoves a maggot looking thing in my face. Soon after, they become creepy caterpillars. Big antennas that just wiggle and wave at you. I can't tell which end is the head or tail. Just creepy. But still I smile and nod, but ready for this 'project' to end, since the huge box (with now TWO big plants in it) are still in my living room.

OK so not to draw out the story... TODAY We come home from the hospital. I was so happy to be home, Aiden of course rushed over to his "butterfly" bin.. and notices there are NO caterpillars! Oh no, Cuddles must have eaten them?

Moments later... I see a wiggling out of the corner of my eye. I focus in and notice there are big fat caterpillars all over my house! Outside the box. They were forming chrysalises on my china cabinet, on the toy box... etc

Are you serious!?

Joey thinks this is the greatest thing ever... me, not so much. I think we have successfully moved all the cacoons .. but I still think there is one missing. I just KNOW when I finally get to lay my head on my pillow there will be a big caterpillar munching on my ear. ACK!!

I will say, that no matter how wacky, or how many 'on the loose' caterpillars there are.. I LOVE being home. I LOVE this crazy life. There may be moments that just plain ole stink, like yesterday, but I am so happy to have this quirky man and these amazing kids.

Thank you for your prayers. Keep 'em coming. I have a feeling that this whole topic of endocrine isn't over yet. The tests will be back in about 1 week.

Thursday, September 2, 2010 2:41 PM CDT

OK so we have had a snag in our day. AIden went in to the hospital for some hormone testing. They tried to stimulate his pituitary gland and liver to see how he would respond to the stimulation test.

He didn't do too great. About 20 minutes after they gave him some glucagon he went into his autonomic crisis/thingy. He was immediatly pale and sick and falling asleep. Just out of it. His heart rate started getting high, etc etc.. so the problem was we couldn't just give him the fluids/ meds he needed because he was in the middle of a hormone test, so as he got sicker we made some calls.

It is so crazy how fast it goes. the Infusion nurse was really shocked but so sweet to us. I think it is just SO weird. Everytime we underestimate his dysuatonomia it reminds us that it has a strong grip on him. He is fragile. He may look and act like a tank, but he is fragile.

So the weirdest part (to me and the nurses) the glucagon was supposed to spike his glucose, just 20 minutes after he started turning bad his glucose was 43. NOT appropriate. It might have spiked then crashed causing him to get worse. His pediatrician said that this effects his cortisol levels and throws him into a crisis.

So anyway after looking at the side effects of glucagon SQ it directly effects the sympathetic nervous system. Well.. um, the sympathetic nervous system is what is the problem with Aiden. So it all makes sense. As muh as this can make sense.

Anyway, the point of the story, he got my blood flowing and scared us all for a moment, but he is now back to his normal adorable resiliant self. He did get admitted to the hospital but just to make sure he doesn't crash out on us in the middle of the night or something.

I CAN say though.. this kid is the most awesome amazing brave kid ever. I love him so much.

I will update later. My camera finally gave out. so I am only have my cell phone currently. But just imagine his cuteness smiling at you. IV and all.

Go Team Aiden

(ps/ we hate dysautonomia!)

Friday, August 27, 2010 6:41 AM CDT

This has been the wildest week. I have tried to sit down to enter an update but something has dragged me away. I haven't even glanced at a TV in days, sat for longer than a few minutes, so now here i am updating. Hopefully this wonderful update was worth the wait.

First week of school.

I can't even believe how fast summer went. It was like I blinked and it was over. We had so much fun this summer just being kids, (this includes myself). And it was officially our very first summer with out one hospital trip/admission. EVER. EVER!

I think we have really learned to manage some of the symptoms before they get worse. Zofran seems to be our best friend as well as the florinef. It really has been an incrediable improvement. I know he feels better and has been way more stable. Less headaches were the theme for this year. I can remember last year a headache every morning and every night. Pain that he just winced with when he thought no one was watching. This summer there was much less headaches.. what a relief.

So Monday started off the festivities of the school year. Mason had his first day. If he could have drove himself he would have. That kid was ready ready to go in Ms. Moore's Pre K class. (shuddering thinking next year he is in Kindergarten) He was shy going into his class, but with a big smile on his face. I sat and watched him and just got tears in my eyes thinking how only yesterday he was going into the 2yr old class. When people tell me how fast it goes, they are right. So fast.

That big smile was just half the size it was, when we picked him up. And I LOOOOVE the stories. He is just making me laugh out loud at all the stories of the kids in class. I am sure 1/2 of it is distorted and untrue, but from the eyes of Mason, it is all reality. He is such a doll, and can we all just say how shocked we are that he will be 5 years old in a few weeks!!?? Talk about going by so fast! He was the 'bun in the oven' just a blink ago.

So We had the daunting task of meeting Aiden's teacher and learning the new schedule. I was honestly NERVOUS. I wasn't sure what we would encoutner. I knew that it would be ok in the long run, but just wasnt sure how open they new teacher would be to our very different schedule (1/2 homebound 1/2 school) and to his special needs. It was really scary for me.

Then we met Mrs. Green. (enter harp music, and chorus of halleluia's) Aiden's new teacher is the PERFECT mix of everything we have desired for him. She is amazing. Immediatly after only moments of meeting her, she had my mind at ease and then so much hope set in! I had hoped and hoped we could have a day where we could possible leave Aiden at school (with out me volunteering, staying close incase of emergency) because Aiden NEEDS independance. And guess what? It ALREADY HAPPENED!! Aiden's very second day of school, I drove away.

Never in a million years would I have done that if it wasn't for this competent, and skilled teacher. I just really can't tell you how God blessed us with this one. Aiden did about 1 1/2 hours with out me on campus, allowing me to speed back to Mason's preschool and pick him up. Oh the JOY it brings me to be the one who drops off Mason, and Picks up mason. Precious times for mommy.

So Third Grade has been a wonderful start already and the growth we shall see in Aiden I know will be exponential this year. I am sooo happy for him (And me!).

This is Aiden on 'meet the teacher day'

and this was me:

So anyway, besides the driving, and the running around and the mounds of papers and packets I have to fill out I get the joy of packing lunches and putting smiley faces on napkins. I can't even begin to tell you how giddy I am to do that.

Life tends to be so unpredictable. In the good and the bad. I am soooo thankful that right now we are 'in the good'. I pray and pray we are turning a new leaf, and just living in the NOW. I promise to keep updating more frequently. We have some big testing next week at the hospital and would COVET your prayers for Aiden. It involves a lot of pokes and some new medications. But hopefully keep it will keep this ball rolling for so many wonderful things to come.

Thank you so much for checking in on my boys. Both of them. God bless!!

Tuesday, August 10, 2010 3:42 PM CDT

Thursday UPDATE:

Well when we got the allergy testing done and almost everything came back as perfectly negative... I got a BUNCH of questions from people asking if we had just fed him the food? Or wondering why we had to do so much waiting and more testing. It was so hard because I knew there was such an awesome possibility that he could have new foods but I knew he was at serious risk just believing the lab results.

So now we are back from all the testing and I can explain to you exactly WHY we didn't just feed him stuff he came back negative to.

The chose 34 foods all of which he was negative in his blood for. The took a little needle, scratched his back, then dropped a protien or solution on each scratch. We didn't even TRY milk since we know he was anaphylactic to it last fall.. but we tried all the others.

Almost instantly the first two spots were angry red flaring welts. The welts were all over his back everything was red and hivey and reacting. Every spot was raised except a few. It was SOOOOOO hard to sit there and see hives all over Aiden and not grab benedryl. It goes against the last 8 years of training. So anyway, his back was burning with itch and he laid there for 20 minutes ignoring the burn and just smiling and asking, "Is it normal?! Is it normal?!"

SIgh

All I could see was red hives. Some were tiny some where massive and spreading in to the next testing spot. But remember ALL of these were negative on his blood. So IF I just would have fed him food.. then he would have been in a lot of danger.

The doctor came in and he was saying how Beef and Pork and Cashew and a few others were so reactive that they were larger than the 'control' histime section. 4 out of 0-4 Then he noted a big surprise his sesame was the worse reaction he had. We knew he was allergic to sesame but honestly it wasn't something I was ever very cautious about. It also came back negative a few months ago on labs.. but today on his body it reacted like acid on his skin! It was crazy.

The doctor said it wasn't really 'cut and dry' because he was SO reactive that some of the ones that only mildly elevated actually COULD be normal! But he couldn't tell. His back was swelling and it just released so much histimine that it could create false positives for even items he is negative to. Like Wheat. It showed up angry and red.. but he eats it everyday.

SOoooooo.. of course it isn't clear or over yet... but one step closer! :) Aiden has to get labs drawn now for all the ones he got skin tested for and he will start comparing results. i think he might have to have another skin test again with out the awful ones and see what happens.

The EXCITING news was.. it looks like posssibly crab (his dream food) and a few fish were potentially negative. But hard to tell of course because his whole back was red.

So.... I sat there just shaking and nervous and excited and freaked out and the doctor litterally walked over and held my wrist and took my pulse!!! (great, another doctor thinks I am a freak!) He laughed at me and patted me on the back. He said he really hadn't had any child with the severity and history Aiden had.. I had every reason to be a mess. It made me cry a little.

So.. I am just thankful to God that Aiden was safe today. He feels SO hopeful that in a month he will be trying something new. We just don't know yet. But praise God that it wasn't a compelte and absolute no. I am so thankful for this!

Now I got the lecture to be sure to never leave home with out epi and benedryl. I felt like rolling my eyes and just saying, "NO duh!!"

Today was scary, and frightening, and dramatic and wonderful and hopeful. I thank you for your prayers. I am taking him to get blood drawn on monday for more allergy testings, as well as check out his normal labs. I will keep you posted. Until then PLEASE keep praying!! God bless!!!

Ps/ thank you for sharing in this excitement with us. I just love how Aiden has so many people rooting in his corner. It makes us feel so loved. God bless you!!

Team Aiden

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

tuesday update :

I have this inner anxiety that is gripping on me lately. It is all based around what happens on Thursday AM. Aiden is getting all of his allergy testing done.

So almost all of the foods he was previously deathly allergic to last year and for the first 7 years of his life, came back NORMAL only 6 months after stopping the prograf. Phenominal, miracle, exciting, all words that don't come close to what we feel. But one word I keep going back to is... APPREHNSIVE.

I am so nervous. I mean, not really nervous that he will have a big reaction. Because let's face it, I can handle that. I will epi that kid faster than anyone. BUT just nervous to get all of our hopes up!

I kept telling myself over and over, just ONE food. just ONE new food would be a dream for him. He has SUCH a limited diet. To get a new protien would be a dream. I know he wants this more than he wants anything. More than never having his port, or his scars, or his liver disease. His food allergies have such a daily impact on his life that this is really our biggest prayer for him.

So all of the prayers and research and work and wondering and then finally planning and then doing.. all leads to thursday. Did it ALREADY work?!

Do you remember my old posts just wishing and begging our old doctors would just believe all the studies about prograf and allergies. I would bring papers and beg them just to look into it. But nothing. I have always always felt this burden on my heart that the prograf has been his problem. Years before his dysautonomia came about it was always the food allergies.

So here we are 3 years after moving his care to Cinci. After scopes and trials and weaning and weaning then stopping this important drug. Now less than one year later, he will be getting his first skin test ever for these foods.

Aiden has been WAY to reactive in the past to ever consider putting it on his skin. he would stop breathing. But now, after having his eosinophillic disease cured and now allergies coming back normal in his blood.. we are ready for the next big step.

The anxiety and fear has nothing to do with the possible danger of the testing.. it has everything to do with all the hopes that have been placed in this. I KNOW there is a high likely hood that he will still be skin reactive. It is soo soon. But just One food. One measly thing. A bean. A fruit... heaven help me a fish or crab. Something new.

I always think about this Bible verse when I wonder and worry over Aiden's allergies and food. It is such a beautiful verse I think I will post it here:

Do Not Worry
25"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27Who of you by worrying can add a single hour to his life? " Matthew 5:25 - 27

So for the next few days if you speak to me and I am a shade more intense than normal (seems impossible to achieve) just know I am in a deep prayer and a deep worry for my child's heart. Because as much as i want this for him.. Aiden wants this more.

He has made recipes and drawings of him eating foods he has never had. He has obsessivly asked me, "what is that made of..will I one day eat that?" A child who has never tried pizza, icecream, a hamburger, a BBQ rib. So many things he has never tasted and just wonders about.

He knows there was a lab that showed he was getting better and I hesitated to even share that with him for chance his hopes would be dashed. But alas this is yet another decision I have just do my best with. There is no "what to expect when you are expecting (the chronic illness version)" This is just myself and Joey guessing and sometimes messing up.

So I am just asking.. ok shamelessly begging.. that you would say an extra prayer that Aiden's allergy testing comes back in a good way.

Pray for one new food. And if it is more.. then you will all be getting inundated with photos of him trying all of those dream recipes he has made.

God is so good. I am so thankful for all we have. I am in no form of denial of how wonderful this prayer that we are asking is. It is such a normal request.. we are so blessed. I feel so happy and excited and anxious right now.. But it is all wonderful.

Keep believing.. and pray the kid can have a burger. :)

Thursday, July 29, 2010 7:08 AM CDT

So it started with a mass on my ovary, then possibly my gallbladder also having stones, now.. I have cellulitis on my nose! I swear... this is just so weird!

I never ever believed a body could REALLY run down due to stress but I can honestly say, that I have never had a sick moment in my life (other than the random cold) until Aiden's sepsis in the spring. Now I keep telling my body, "calm down, it's ok!" but alas it keeps coming.

As cliche as it sounds, It makes me think of the suffering of my child. How could it not!? I mean, I am not claiming to be suffering. Annoying and irritated yes, but suffering no. But with these mild 'issues' that I am facing I think of how much my 8 year old has seen over the past 8 years.

I just can't explain how it makes me feel as a mom.

Why is he so perky? Why is he so happy? Why does he NEVER complain? How can he think so much of others? How did he turn out so ... nice?

Will it change?

I think all parents (or is it just me?) look at their children and do the mental tally. "What have I screwed up today?" I sat on the couch last night, icing my nose. Mason was on the floor making 'snowflakes' by cutting paper squares and shapes, while Aiden cuddled me on the couch.

Aiden turned to me, and said, "I know how you feel. I feel bad all the time."

I have been so emotional it doesn't take much to cry, and I did. I hugged him and reminded him that my little boo boos are nothing ,and that I am so proud that he is sharing how he feels. He was stroking my hair like I do to him all the time. I just sat there thinking last night, "what have I done so RIGHT, to deserve such a wonderful life?"

Nose swollen and red like Rudolf, I grab both of my boys for a big hug. I often think when I am short or curt or hurried, that I MUST be screwing my kids up for good. But every once in a while I am blown away at how kind and loving and how blessed they have made me feel, inspite of my many inperfections.

As I held on to the boys, I stroked little Mason's hair. Then a clump fell out. I mean a thick perfect clump. Then another. I immediatly began to run my hands in his hair and saw the perfect square of hair missing. Yep, it happened... Mason decided to cut his own hair while he was making snowflakes. I burst out laughing because of how REAL the moment was. Swollen nose and all..

I love my life.

ps/ on the Team Aiden front.. Aiden has been feeling pretty good lately! Much less ZOfran usage is always a good indicator. His liver enzymes creeped up a tad this last draw so we are going to re-draw him tomorrow. I am not worried about it, but think the redraw will be a good way to ease all of our minds. We are almost at 12 months off prograf.. in my wildest dreams I never imagined it would be like this. Aiden's allergy tests are scheduled for Sepetember 6th but hopefully we can get it moved up sooner.

Keep believing, and thank you for the prayer and support!

Love,
Lisa

Thursday, July 15, 2010 6:45 AM CDT

Darn it. I hate it when I take little breaks from updating because so much happens and I don't know how to make it all fit back into one single new update. I guess some of it I will have to skip. I think it is easiest for me to start from today and work backwards.

Today, yet another day, Aiden wakes up feeling terrible. I feel the hospital looming everyday. He is not coping in the heat at all. Nothing seems to bring him relief. He is nausious and sick every single day. (let me add he is not outside for longer than a few minutes) Not one day goes by and he isn't having blood pressure issues. It is just really a crummy few weeks for him. He has asked now for the past 4 days to be admitted into the hospital for fluids. I of course, don't want to do that, so we wait seeing if for whatever reason it is flaring, it maybe it will go away again. I am becoming ever doubtful though.

I can't help it, but feel sad for him when he is feeling sad. This morning, he came in and told me how he laid in bed last night holding in his sickness, and hoping when he woke up today it would all be gone. Still here. Still lingering. He smiles and fights so hard through it all, but it just is so sad to see him always feeling bad.

WHY does he feel bad? In one word? Heat.

He can't cool himself.

It is hot outside and instead of getting a mild coolness and dampness on your skin as you step in the 90 degree heat, Aiden's core tempature rises. He gets a fever. Have you had a low grade fever? It feels terrible. You feel weak and crummy. That is Aiden every day. People don't even realize how amazing of a machine our bodies are. Things happen with out our knowledge. Our brain (autonomic system) tells our hair on our arms to stand up. Microscopic moisture is on our skin you can't even see, forms. We sweat, we cool.. it is amazing the design of our bodies. I am so fascinated by the autonomic system... the stuff we take for granted.

Well not anymore.

Blood pressures and cooling. Fluids shifting from tisssues, vessles to kidneys. Heart rates that increase at appropriate times, and lower when needed. ALl of that is the autonomic system. And all of it broken in my little boy.

So many things have happened for Aiden lately that have just brought him NOTHING BUT JOY. The telethon, and our AMAZING Washington DC trip. Just last week, Aiden actually threw out the FIRST PITCH at the Rays vs Red Sox game! SO many amazing things, and each time something special happens, Joey and I lean in to remind him, "All of those boo boos all of those hospital days, all of the things that make you feel bad, these people care so much. They want you to have a GOOD DAY."

Aiden is really so amazing. He rarely complains or rarely says, "Why me? Why not someone else". He is maturing and growing and now starting to think about the 'other children' in the hospitals and how he can help. I am so proud of this young man. I know he will do wonderful things in life. He is respectful and kind, and takes wonderful care of his brother. I just hate that he has to have bad days.

In other news.. I mentioned that he was asked to throw out the First Pitch at the Tampa Bay Rays vs Bost Red Sox. It was amazing!! Aiden was so brave and so adorable. He got to get some of his favorite player's autographs. The team made Aiden his own 'official' jersey with his name on the back. BJ Upton signed the shirt, and Aiden was in Heaven.

When that little guy got up on to that mound, the stands were full and the game announcer began to tell Aiden's story. Words like "COURAGE and BRAVE" were used as he stood holding that ball. They showed video from his Telethon piece on the big screen and talked about how he was a brave survivor of his disease. To say I was crying is an understatement. I had the 'ugly' cry going on. When he threw that ball straight to Jeff Neiman, EVERYONE in that staduim cheered. It was very very emotional. He was grinning ear to ear. And as we headed back to our seats, people high fived Aiden and cheered for him. I ugly-cried all the way to my seat.

Aiden walked around his room yesterday and held that jersey in his hands, and just hugged it. Thank you Ray's Baseball for making his crummy days better, with that awesome memory. I wish he could just be like other kids, totally never a worry in his heart, but he can't. So when people do these special things, or take time to remember that he is JUST a LITTLE BOY, and send him a note or high five him and encourage him... it really means a lot.

There is so much more to share.. so many things going on in our home that are exciting! Mason in 1 month will end his 3 1/2 years of Occupational Therapy!! He will only be having Physical therapy left to do. We are so proud of him and all he has accomplished. I can't even begin to express how hard of a worker he is! Both of my boys make me so proud, and inspire me to improve and be better.

I started a little business to do what I can to help our family financially. I am selling "Thirty-one Gifts" ( www.mythirtyone.com/lisahawk ) It is beautiful bags, purses, stationary that you can have monogrammed or personalized. I have my own website where you can place an order. I am really enjoying this new part of my life and hoping I can help Joey take off some of the pressures he has. He works full time for the State, then leaves there and then mows lawns, trims trees, does so much to help and work for our family. (in the 100 degree heat) So if you are interested in some beautiful stuff, check out the link, or email me. rolexh@aol.com it is much like Mary Kay where I can host catalog parties or parties in your home. But anyone can order off the website/catalog that would like to.

Also in other news... I am still having issues due to the mass on my ovary/phallopean tubes.. so I have made another appointment to discuss it today. We are probably facing surgical removal of that one ovary but that old addage. "You cant take care of someone else, if you don't take care of yourself first" is very very true. I have felt 60t best for the past months.. and just don't want to feel this bad anymore. So I will update ya'll on that later.

It may not be the most funny, witty or exciting update... but I am glad to have updated. You are all so kind to keep checking in our family. I love to tell Aiden when people sign his guestbook and he loves to read it too. I can't thank you all enough for the past years of support and prayers.

Next week the boys see endocrine to talk about growth issues and the 'plan'. I will update for sure about that.

God bless
Lisa
Team Aiden (always fighting and believing)

Wednesday, June 23, 2010 3:22 PM CDT

Settled in and our summer has begun.

Washington DC was above and beyond any of our expectations. I was so happy with everything we did and participated in. It was an honor to go and to be a part of such a neat event! Not to mention spend some awesome quality time with my family.

I have lots of photos of the trip and saw that our Children's hospital has also placed a bunch on their website

www.allkids.org

Our hotel was litterally a block from the White House, so on our last day we meandered down the road, taking in all the beautiful weather and scenery. The Flowers were full bloom, and the people sat on their terrace-front cafes and drank coffee and read the paper. It was pretty different than the usual day here in St. Pete.

Us in front of the White House.

The boys loved all the hustle and bustle of the city. Lots of sirens and whistles blowing. People walking the streets heading to and from work, it was pretty cool. But the best part was when the black SUV's and the police would come rushing by. We always would say that it was the president or someone related, but later found out that the president always has an ambulance that drives along side it as well. So we looked and looked, we saw ambulances, but no limos and SUV's. Until the last day, outside the White House.. and there he was. The President in his limo.

The boys cheered, it was like the ultimate scavenger hunt, "find the president of the United States in a motorcaide"... checked off the list!

The city has tons of 'gift shops' and tourist traps, this one was outside our hotel, and we couldn't resist.

This is Aiden in our hotel Lobby... did I mention it was fancy??

We met Kathy Castor, Dem congresswoman. She was SOOO kind, and beside's Bill Young, my favorite, because she was the only one to ask questions to me as a mom.

Aiden and Mason had the pleasure of meeting Cong. Bill Young. As you can see from his amazing office with the 'best view in Congress', this man is well respected and has paved the way for many others. He is an incrediable advocate for children's health and the National Bone Marrow Donor registry was created and named after him. Not to mention he was so sweet and wanted to "hold Mason".. his request.

Techinally he said to his Chief of Staff, "Can you place both boys in my arms??" I convinced him that although Aiden was small, he was like a tank. Not a good idea, I could see a hip replacement because the Hawk Kids took down Cong. Bill Young.

Here are some of the very lovely (inside and out) women who work for the National Association for Children's Hospitals... I loved them!

Of course after we stormed the Capitol we did get some great family photos of us.. Here is my favorite.

There was fun 'down time' too.. lots of activities and things for the kids. Here is Mason and his beloved "Mr. Foxxy" face painted like his little friend

Sadly, Mr. Foxxy has found his new home somewhere between Reagan Airport and Tampa International. Mason is of course, devastated and convienently remembers him when it is bedtime for stalling.

The museums were wonderful, and free. Of course they SHOULD be free, but each time I walked into them for free I was equally shocked. I thought it was a statement. "This is our NATION'S Treasures, for our Nation to enjoy".. and we did! I loved the American History Museum, I was rivited by the Lincoln exhibit. Double rivited at how small Mary Lincoln's waiste was, for the dress the displayed in the hall of First Ladies.

Joey loved the Archives, and now we have fanned a passion for Aiden and blueprints and rare documents. Lots of coloring going on here. Subsequentially, we have rented National Treasure (both movies) and the love for mystery and history has ignited in Aiden.

Mason liked the Hope Diamond exhibit at the Natural History Museum.. of course. That and Mr. Foxxy. (God rest his soul)

Over all it was a blast! It was wonderful!

I was semi suprised with all the drama we had the day before we left, that it wasn't filled with more drama, but thankfully it was a drama free vacation! WE loved that even more!

I am thankful to All Children's and NACH for inviting us.

It will never be forgotten by us and we can now say, we will surely be back to DC sometime again. We loved it.

Have a great week!

Medical updates and jargin another day

Love, Lisa

Wednesday, June 16, 2010 5:38 AM CDT

This has been a whirlwind. I have only a moment between activities and being rushed to one exciting event to the next. Yesterday we enjoyed a guided tour with other families from the NACH event. We went to the Lincoln memorial, Vietnam war memorial and the Korean war Memorial. It was incrediably moving, as you would expect. I looked at the wall with the fallen heros names on it and just thought about how many people it was. Of course my mind wandered and began to think about what a wall would look like for people who die waiting for transplants and each year there would be a wall 1/2 the same size.

I was emotional thinking about my Daddy fighting in Korean war and how scary that would be. What did that feel like for Grandma when my Dad went off into the Air Force? Proud and frightened. I feel I have taken for granted the families that still are right there fighting for our freedoms now. Needless to say my patriotism has been ignited even higher and I am so proud to be American.

We spent about 1 hour back at the Natural History museum just enough time to endure the devastating and ecruciating decision on HOW to spend their $10.00 in the gift shop. It was like they were picking out children from the stuffed animal line. I would grab one hand it to Mason, he would inspect and then say something like, "He isn't special enough.. He needs sadder eyes." GEESH ok.

Later we had an incrediable lunch back at the JW Marriot. It wasn't incrediable because of the food neccesarily (although the Maryland crabcake was pretty outstanding) it was because Aiden got to eat. The chef, with big tall hat and all, came to our table and brought Aiden his baked chicken and fries, with a handmade spritzer of strawberries. Aiden was so excited and ate it so fast! I was so happy to just see him not have to munch on a cracker and watch us all eat. Thank you to this hotel and that amazing chef, each meal has been just so easy and wonderful.

Yesterday we also had the kids big fun carnival. They had magicians and photos. Loud fun music and of course MORE food. It was a blast. We got to meet a lot of precious kids ad they ran around trading their 'All Star" cards with each other. The ALl Star Cards are like little baseball cards they made for each child to pass out to the Congressmen and other children. It has a little summary of each child, diagnosis, hospital etc. Aiden's of course is so understated, but how could they possibly fit it all on a card.

I don't want to get deep on these updates, but I had a delightful talk with our friend and hospital rep Ann, about how it feels so 'strange' to be one of the families that represent 'sick' children. I read and hear about other stories and my heart sinks for them. But then they ask about ours and I almost 'forget'.. OH YEAH! I am one of them too! I begin to try to explain Aiden, eyes usually widen and then the look of horror on their faces is next. Funny how I just look at it all as normal now. Not everyday, but yeah, telling the stories it is such a testimony to how AWESOME God is.

SO last night was fun, exhausting but just amazing. We are feeling blessed to be here.

Today we are getting ready to go to the 'hill' (whatever I mean) and speak to congress! Seriously who woulda thunk our little family would be so lucky as to represent children all over this country?! I am honored to be a part of it.

The main thing we are speaking on is funding to pediatric hospitals and for pediatricians who go to school and do their residencies at children's hospitals. There is no current funding set in law for this like there is for Adult hospitals. They have to appeal and ask for the funding every 6 months or so. So here we are telling them.. SHOWING them the importance of pediatric medicine. It isn't just 'small adults'.. these children are so special.

Typing this has been so exciting I just knocked over my Starbucks coffee all over the fancy rug in the lobby of the fancy hotel. (we will make a 'mark' here after all!) so I better run to find someone to help me clean it up.

Keep checking in.. I do have a ton of photos to post and more stories to share.

Love,
"The Hawk's Go to Washington"

Monday, June 14, 2010 4:22 PM CDT

My oh my!!

We are in Washington D.C.!!

click this link for the link to what we are doing! NATIONAL ADVOCACY DAY

I am thrilled to say we are here and have made it all in one piece. (mind you our 'mother board' on our home air conditioning went on the fritz yesterday, Mason came down with the 24 hour stomach bug and last night our tire was flat from a nail in it! All in 12 hours!

So needless to say, it was a welcome suprise to have a absolutly calm and smooth flight and arrival to this amazing city. NOW I really understand what the energy and excitement from loved ones was about. Washington DC is just a magical place!

We have a very short time here in the city, but are staying at just the most amazing hotel. JW Marriot. Not exactly the usual road-side inn we stay in. I had the pleasure to meet the executive chef of the entire hotel who litterally brought me to TEARS moments ago telling me and assuring me that he would create a very special SAFE menu for Aiden. I mean. wow. If only we could do this more often.

So due to that we are SOAKING it all up.

Today was rather rushed and hurried but we did get some awesome sight seeing in. (and me riding on the metro was not part of the planned sight seeing.. yikes!) We saw the Air and Space Museum and then braved the amazing Natural History. We are 'saving' the American history museum for our last day on Thursday. I can't wait!!!!

We walked ALL over DC. It reminds me of Chicago with the stone buildings and clean streets. I love being in a new place purely on a 'vacation!' what an amazing treat this has been.

Tomorrow we start 'business' and have our big breakfast, then tour of the city, then children's hospital fair. We will be meeting with the press, where I will be 'twittering' or 'tweeting' or something to that effect, and the boys will interview and tell how much they adore the fact that our children's hospital has been so good to them.

We do the whole 'senate' thing on Wednesday and I will be back on the website each day to update!

I have found that the Hawk family is a tad out of our league.. and drug the laptop to the lobby for the 'free' wifi. I think it is funny how the Holiday Inn Express has free wifi in the rooms, but at this grand hotel it costs extra. Joey says, we are 'ham and egg-ers' I am not sure what that means, but I kind of 'get it' right now.

Anyway, I have a perma-grin on my face. Everyone is healthy and doing well. My ultrasound on friday came back better as the mass had shrunk 2 cm. Aiden is much improved in this cooler climate and life is good!!

Keep checking in.. late tonight I will be posting photos.

Love to you!
Lisa

Wednesday, June 9, 2010 10:04 AM CDT

Aiden just finished 2nd grade today. WOW. Unreal. I can't believe we did it! It was so wonderful to say, Aiden got to go to school this year. It was complicated, and tough, but wonderful and a time of growth! I am so proud of him.

He ended with Honor Roll, and to think, he spent this last semester admitted in the hospital 3 separate times, underwent 4 procedures, and out of state travel to his hospital, plus countless other lab draws and doctors visits. AND he got Honor Roll.

I wanted to put up here the incredibly sweet certificate he received from his homebound teacher Mrs. Fraize. It read:

"We recognize you, Aiden Hawk, for your outstanding effort and quality work, excellent grades from three different schools and the SMILES and LAUGHTER you shared with others during tough experiences."

OK that was a tear jerker.

This isn't just a kid going to school and doing good or working hard. This was so much more to us... This is LIVING. Smiling and laughing and sharing with others during tough times.

I couldn't be more proud of THAT.

This year he got Principals List twice, Student of the Month, Honor Roll, scored grade levels high on math assessments... but above all...

Aiden persevered through difficult times.

As a mom THAT is what I am proud of. That is what Joey and I pray and strive for. It isn't the scores it is the HEART he throws into everything he does. The passion and love for life. I am so proud.

We will not ever be controlled or have life designed or determined by Dysautonomia or transplant. All of us are so much more. Aiden is more than just student, patient, son, brother. Aiden is perseverance and courage. He is joy and laughter. He is funny and loud.

Aiden is...

a THIRD grader!!!!

Congratulations to Aiden for this milestone and achievement. Your Mommy and Daddy are so very very proud.

Friday, June 4, 2010 10:38 AM CDT

OK telethon information

if you are far away you can still view it live on the

www.allkids.org/telethon

just find the link

If you are local it is on NBC.

Don't forget to go to the Taste of Pinellas! It is a huge fundraiser for the hospital and for all the miracles they help provide!

Aiden's time slots will be:

SAT. JUNE 5TH at 9:30 PM and
SUN. JUNE 6TH at 10:45 AM and 4:30 PM

We will be 'live' on set, so it should be fun and unpredictable. :)

If you want to watch Aiden's telethon video you can now.

Here is a link to the story

http://www.allkids.org/Teleth_homepage.cfm?id=214&fr=true

In other news:

Aiden has had a pretty crummy week health wise. His dysautonomia is flaring. We have avoided hospital admission and instead we upped his florinef to twice a day again. Hoping it helps. He is feeling better than he was, so hopefully it is helping.

This week Aiden and Mason's Nana has been visiting. I really don't want her to leave, I can't even believe how much fun we have had! Pretty wonderful for them to have these memories and special times. I feel blessed! not to mention it has been nice to have someone here above the age of 8 during the day. :)

We did learn some very very sad news today, one of Aiden's pediatrician (in the practice) suddenly passes away this week. We are very sad. Aiden said she was "sooo nice and makes me laugh" he cried some tears and remembered he would see her in Heaven one day. I am sad because I just hope she knows how much we appreciate all she has done for aiden over the years. She wasn't Aiden's primary pediatrician, but as you can imagine the whole practice had to get to know Aiden very intimatly due to his frequent admissions. She would ALWAYS make us laugh when she would stroll into the hospital room and say some funny story or silly antedote.

So THANK YOU Dr. Gallagher. Thank you for caring for Aiden over the past 8 years. You will be missed.

Love, Lisa

Sunday, May 30, 2010 7:31 AM CDT

OK ok.. that post freaked out some people. Sometimes it is hard to hear the 'not so great' part of living in trauma. I like my Uncle's refference to a banner flying over the beaches saying "This SUCKS #@!" that was pretty funny!

I got to go out on a DATE with Joey last night, and it was very healing. No one in the whole world could ever know how this all feels.. except him. I am so blessed to have Joey in my life. If you have ever met Joey, you would understand how special he is. He is my hero and my protector, and next weekend at the telethon will be standing my our side while our story plays on air.

I wanted to say that even though we are honored to do the telethon peice about the our awesome nurse Kristin.. I don't think it was thought out too well, by MYSELF. I think the fact that now I am reliving this horrific event on TV 3 times is what is triggering some of these emotions. I am nervous about how it will turn out. I know they will do a beautiful job and I do NOT regret talking about it, but I am being honest in saying that this makes me a little nervous. I do know that God has a plan and that I am so thankful and honored to be able to share the miracles we have received. I pray the video clip/telethon piece will just bring us closure from it all.

So in addition to being married to the kindest, most wonderful man in the world. I have another man in my life that is having a special day.

I wanted to post today and just say a Happy Birthday to my Dad.

He is 79 today.

I can't even begin to express how much I love my Dad. I will never ever forget when Aiden was born, I was a mother for the very first time. Only a day or so had passed and we were learning that Aiden was very sick. Alone in my maternity recovery room, my Dad held Aiden and held my hand. We cried together with out sharing any words.

I remember dancing with my Dad at my wedding.. He had tears in his eyes and he said, "All i can see is your pig tails and your bumped and bruised knees." I think so often of how much he loves me and how I was given the most generous and caring father in the world.

I love that Mason Grady is named after my dad Thomas Grady, but love even more that my Dad and my boys have such a special bond. I am so glad they get to know the sweet man that raised me.

So with that, and some happy tears, I just wanted to say Happy 79th Birthday Daddy, you truely are the best father I could have ever imagined.

My dad played Santa for our kids playgroup one year.. he he is goofing off! Mid 70's and just a kid at heart!

Here is my dad and his buddy Mason... So sweet

Special Buddies, Aiden and his grandpa!

Aiden, Mason and their Grandpa at Kenedy Space center! LOL

Love- Lisa

Friday, May 28, 2010 1:42 PM CDT

I am doing it. I am updating. I guess you can say I have been a little bit of a hermit regarding talking about anything medical lately. I think I am still really in a funk. I just have a hard time coming to grips with the fact that this stuff DOES all get to me. It does cut me. I am not 'so brave' or 'so strong'. I am just a human. A mom, a real person.

Each time I come to update Aiden's page I want to say, "I don't want to talk about it" and cross my arms and close my eyes. I want to move on. I want to be exactly as everyone thinks I should be. "over it".

But I am not.

I can't share this with any of my friends anymore. I can't sit and ask them to listen to painful memories as I try to heal from them. It isn't fair to them! No one should have to listen to how traumatized I am from almost losing Aiden only weeks ago. I surely can't talk to Joey about it because he loses sleep and can't stand to remember Aiden hallicunating and not remembering his name. It hurts him and he isn't ready to talk about it... while I NEED to talk about it.

So here I am. Aiden's caringbridge page. (my 'blog' as people refer to it). I can share it here. The black letters fall on the white background and just land there. There is no expression from it, no sad eyes, no tears coming back to me. This page doesn't tell me "I have heard too much" or "I don't want to talk about it". So here I am. Feeling like I have no one to tell.. and telling everyone at the same time.

THIS SUCKS!

It sucks.

My friend Cheryl, who has seen that, plus worse... reminded me, and soothed me with the only words that make me feel normal. "Lisa, some things take peices of you forever. Innocence is lost forever. The things we have seen our children endure, at times it can take a little piece of us."

And that is how I feel.

I am TRYING to move on and go into denial, but it has only been WEEKS since I saw Aiden have a major bleed and go into septic shock. Why don't I get to heal from this with time? Why am I my harsh-ist critic?

Because we have seen so much over so many years, I suppose I keep telling myself, "move on. He is ok." But it is so hard. I feel silenced and censored.

SO here I am, just being real. I am not feeling well. This 'mass' or whatever that is in my uterus is probably spinning me into some hormonal-menopausal-fake pregnancy emotional deal. I try to laugh about it, but seriously I am trying to just heal and deal with some hospital demon's and all the while I am having hot flashes and getting zits. Kick a girl while she's down!

So if this update is at all uncomfortable for you, just chalk it up to me being hormonal or whatever. But don't lie to yourself. I am not sick, I am not depressed.. I am reacting appropriatly to a traumatic event. YOU would react this way too. If I cry a tear because I suddenly think of Aiden almost slipping away.. don't judge me because you think I can't cope.. just be thankful if you haven't been in these shoes.

I didn't ask to have my child suffer ever. I didn't ask to see him hurt. So I can officially say, some days I just don't know how to walk through it without difficulty.

It is OK to say.. it sucks.

Lisa, it really is.

You know the 'hospital mom' or the 'chronic mom' or the 'liver mom' or the 'cancer mom'.. whatever name we have.. we are told we are 'so strong'. People tell us all the time, "I don't know how you do it!" or "I could never do what you do." We are held at a higher level because we manage to brush our hair, smile in hallways, all the while fighting beastly diagnosises for our children. We aren't saints. Not ONE single mother I know who has walked this path is 'special'.

They just love thier children.

They do the best they can. They have no choice. They would die for their child. We are mom's. But we are also human.

And it is ok to let you know, we don't have special genetic super power ability that others don't have. I am not any better than coping that other people.

I have a wonderful powerful faith in God.. but I also have a soul. I have pain and sadness at times. And this is one of those times.

So.

Yep.

Aren't you glad I finally updated?

Not much of an update. Maybe I should make it a little more 'official'?

Ok, here is some updated information. We are going to be on the telethon next weekend. I am speaking about this actual event.. but in doing so I am thanking the most amazing nurses any hospital could have. I am thanking them for saving Aiden. I haven't seen the video clip yet. I have no idea what it will be like. But I do know that it is meant from the heart.

I will post the clips here. We are appearing 3 times live on the set of the telethon. If you are local I will post those times so you can see us. If not local I know we will have a clip soon to post here.

I want to thank the sweetest angel I have had the joy of knowing. Haley was only 10 years old when she forced me to get a caringbridge page. ( I say forced because she was a 'force to reckon with' if I didn't!) She was my first guest to ever sign this guestbook. I give her the credit for the ability to 'get it off my chest', when sometimes in real life it is almost impossible.

Hug those kids tight.

And also a selfish request.

Now that school is almost out, now that summer is here. Remember enjoy it. If you can, play with those kids, laugh with them, soak it all up. Put it on film, write it all down. Breath each moment in like it might be the last. Just stop and remember that they are only little for a little time. Treasure it and don't take it for granted. I know I am not taking a moment for granted!

Update coming soon.. and I promise to lighten it up.

Lisa

Thursday, May 13, 2010 2:18 PM CDT

Just heard from my doctor the blood test for ovarian cancer was normal. THANK GOD! I will just deal with the issue and follow their medical advice like a good patient... So thank you for praying. I would officially like to ask for any more drama that wants to come into our lives to GET OUT.. we need a dang break!

So. now we can resume to our regularly scheduled programming.

AIDEN!

I have the best ever news ever.

We got preliminary allergy results.

I have NOT told Aiden for fear it isn't real and to get him dissapointed before I know and hear the plan.

But...

After only 7 months off the prograf. ALmost every single food that he was previously allergic to... he is NOT allergic to any more.

Aiden is now only severely allergic to milk and eggs.. and mildly allergic to nuts.

This is what we have been "believing" folks! This is what I have been saying! I am sooo excited! I am soooo thankful to God for giving us this amazing news! I just can't even believe that it only took 7 months and Aiden's allergies have begun to dissapear.

Praise God!!!!!

The best part of all of this.. we JUST got the liver biopsy so we know he isn't rejecting at all! No prograf and no rejection and no eosinophillic disease and now less and less allergies.

Thank you Lord!!!

So the plan?

Well. I am to speak to allergy and we will now schedule a skin test. He can still react to the negatives in the blood.. so the skin test is our next hurdle. IF we get to have foods he STILL doesn't react to then.. they will place him in a clinical setting. (outpatient at the hospital) and do a food challenge. ONE food at a time.

If (by the grace of God) beef is negative (was his second highest food allergin last year)... then we will begin with beef. Then pork. that will allow him medications with gelatin and so many more things in his life. We will then create a plan from there.

I suspect this is just the beginning of this journey but we are thrilled.

Joey and I only told Aiden, "Your tests look better and better!!" and he was soooo excited. We prayed for ONE food. just ONE new food. He got dozens.

So good news for Momma (me) and good news for Aiden.

This is just a might be my new alltime favorite update. Joey's sweater photo has nothin' on this.

Love,
Lisa

WHo is STILL and ALWAYS believing!

Sunday, May 9, 2010 7:46 AM CDT

I am sorry I didn't update as I had planned. The week has turned out sort of crazy. But it has done nothing but remind me of the power of motherhood. I am writing this update on Mother's day thinking about all the different ways those two beautiful children have made me grow, change, and become a better person.

This week I have had some abdominal pain. With out too much detail, I was directed to my OB/GYN for some testing. I went to my old doctor, the one I used when I was pregnant with Aiden. They are one of the best in the area and now that my insurance covers them again, I was releived to come back. Until I walked down that same hallway that I had 8 years before. It was so strange. I stood looking at that same cork board, with those smiling mom's and beautiful babies pinned to it, and began to remember.

It had been 8 years, but I was suddenly reminded of what I felt when I came back with my newborn. He was sick. It was like a dark veil was over me. I sat there with all those other new mommies. Looking at my newborn, knowing that he was diseased and sick. I was grieving the gerber baby I had imagined, and it was so hard.

The fact is, every step of motherhood for me has been a different path. I kept walking down that hall at the doctors office on Friday smiling at those babies and birth announcements. As I walked I formally said goodbye to that sweet young innocent Lisa age 26 with sick baby. I said hello to mother of two amazing boys, age 34 and thrilled with my life.

I didn't feel sad for me today. I felt sad for me back then. I didn't know how it would go. I didn't know that this life would be so amazing. I just was so sad and frightened. Now things are different.

It is amazing what motherhood has taught me. It made me who I am today. I can say that without uncertianty. And even though some of this path has been gut wrenching, it always has be glorious as well. I feel extra special. EXTRA glorious.

That grieving mommy with that tiny newborn, turned to be a woman of strength and celebration. I got to see the re-birth of that baby only 8 months later when he was given his second chance at life. A chance not every child gets. I have been there watching him fight the odds and survive. Even only a month ago, I had the joy of holding my child's hand as he traveled out of ICU back to a normal floor.

I have seen my sweet little Mason, grow into his own hilarious adorable sensitive person. I have seen him blossom into his own and yet he is my every day reminder of the man I married. Mason has blessed my life in a way that I never dreamed possible. I am the luckiest mommy in the world.

So at my appointment they found a mass/growth in my uterus. It is complicated. It is painful and they don't know what it is. It seems attached to my intestines, uterus and ovary. We are doing testing and also trying a pill to see if it shrinks. It has been very difficult for me for so many reasons but the number one reason is because I am a mother. I am not frightened of what it is... I am not scared for me. I just can't stop thinking about my boys. I am in pain and I want to be able to run around and chase them and go to the beach and I want to not be sick or worry them. I am sure it will be fine, but it has been amazing to me how much of a reminder to me of how motherhood has changed me.

In the olden days, the blood draw would have done me in. I am a fainter. But now, it has nothing to do with me. It is all about those boys. What a blessing. A blessing to love other things so much more than you could ever imagine before. They have been the greatest additions to my life. I adore motherhood. I adore even this crazy awful path we sometimes are thrown in.

Today I just want to say Happy Mothers day to all of the mom friends I know. To my mom who spent the entire day at doctors and blood draws with me. I want to say I am sorry to my friends who are mothers who have lost their children. And sorry to my friends who are daughters who lost their mothers.

Life is so crazy. This rollercoaster ride seems so unfair and so strange at times. But like I said before... I would never ever want to ride this ride with any other people in the world. I love my boys. All 3 of them. I am blessed beyond belief. I am thankful for everything and hopeful that things are ok with my own health.

Hugs those you love and remember never to take it for granted.

Happy Mother's day,
Love- Lisa

Friday, April 30, 2010 5:42 PM CDT

PART 1:
We are finally home. It feels so good. I am just so thankful to have this month behind us. It started out just like a nightmare and it has actually ended sort of in a dream.

So much to report, but I just can't hold back my excitement to report the following information.

Since Aiden was 15 months old, Aiden was diagnosed with a disease called Eosinophillic gasterointeritis. He has never in his life been off steriods mainly due to this disease. His doctors in Atlanta actually wrote one of the most prominent studies/articles on how prograf can cause eosinophillic disease in children post transplant (under the age of 12 months).

7 months ago Aiden was bravely (bravely by us, his family who had the ultimate choice) taken off of prograf and placed on rapamune. Today for the first time since he was 1 year old....

Aiden has NO SIGN OF EOSINOPHILLIC Disease.

NONE. It isn't in his blood. It isn't in his GI tract and... It isn't in his bonemarrow.

Just to add to this sureal news, Aiden has NO plan for scoping in the future. In his short life I actually do not know how many scopes Aiden has had. I think since his birth he has been scoped over 30 times. And now, his GI doctor came into our appointment yesterday with this declaration:

"I have bad news. I have been fired. You have no need for me now. You liver is perfect, your GI tract is squeaky clean. I am now just here to see you at your annual."

Aiden of course didn't understand the 'joke' or the sarcasm. He thought she was really fired. But I understood.. Joey was jaw dropped. We all just couldn't wipe the smiles off our faces.

I know the dysautonomia takes front seat in our lives. But it wasn't the thing that has plagued Aiden the longest. The Eos were. Dr. Yazigi said the last scope showed incrediable disease of the esophogus. She was even "shocked" at how beautiful it all looked today.

The best part of this is that the eos are just a form of his allergic disease. And so now, we can actually start visioning the allergic disease also improving in time. Yesterday 50 allergy tests were drawn from Aiden. We are now beginning the first leg of this food allergy journey. Dr Yazigi said she likes to view the immune system in 6 months and 1 year intervals. She said that it takes time to re-write the course of history that it knows. So now, we wait. We don't touch anything. We don't touch the prednisone we just wait.

7 months after stopping prograf, Aiden has had the very first NORMAL scope of his life. ever. Praise God is all I can say.

I know we still are facing a beast with the dysautonomia, but today we just thank God, for this hope and this amazing results. Now I just pray to God that we see similiar results with the allergies. A child who has had 21 anaphylaxises because of just every day foods... has a new hope and new future. I am so happy.

I am actually so excited I am writing an email to Aiden's old GI doctor in Atlanta. He started this journey with us, with the eos and with the steriods. He wrote the big articles on this... and I just know he will be so happy to hear that not only was his article so true, but it has helped one of his own older patients. It all can come full circle.

So with all of that fantastic news. I will also report that the initial bone marrow biopsy results did not show any sign of malignancy. We are waiting for genetic results for the Polycythemia Vera (a malignant type of version of his high red blood cells he already shows) The bone marrow did show two virus's in it 1) Adenovirus and 2)HHV-6 (Similiar to the CMV). They have drawn titers to see if he is positive in his blood if so, they will actually have to do IV treatments to help him get over that. The hematologist is most interested in the HHV-6 virus because it can cause neurologic problems in immunsupressed children like siezures and other things. (this rang a bell to them for our little 'puzzle') So the bonemarrow information isn't over yet. It is to be continued.

I am just soooo thankful to say that tomorrow is May 1st. A new month, a new beginning. I want so badly to just lay this month to rest and be done with it. I am doing my very best. I am not in a perfect place yet, but we are doing the best we can. I am living off the Hope that we have now and just planning to move forward.

Thank you sooooo much for all the prayers and support. I can't thank you all enough.

As I stated at the beginning of this update this was only Part 1. Tomorrow I will post Part 2 and add it to this. But for now, I am off to chill out on my couch, and just relax in the comfies of my home. Home. Ahhhhh there is NO place like it!

Thrilled,
Lisa
Mommy to TWO of the most wonderful children ever.

Thursday, April 29, 2010 5:49 AM CDT

Whoops! Well.. yesterday was the best day of the trip.. so good infact, late last night after settling down, I turn to Joey and say.."JOEY!!! We forgot to page Dr. Kalfa!" Yep that is right. Our family was litterally waiting to find out if Aiden had a malignancy in his bone marrow and were to call and page the hematologist at noon yesterday. And we forgot. We both burst into laughter because, WHO DOES THAT!? We do.

We just were having so much fun, we forgot.

If you ever go to church and your pastor talks about the 'grace' of God that can fall on you and bring you super natural peace, and you never really understood.. well, folks... THAT was it.

So. Whoops! We are heading out of the hotel.. going to the hospital for our last visit. Drawing a ton of allergy labs and seeing our liver team for the run down on the 'plan' and the visit. Ohhh and call the hematologist to find out if the bone marrow had a malignancy. lol. Funny I slept like a rock last night. Guess I am not too worried about these results.

Well I can't post photos yet, or tell the wonderful stories, but yesterday was a joy. Aiden is STILL sore, if you can beieve it. But I guess a big fat needle into your bone will do it. In anycase, pray for today, for our last day and then our journey back to Perry Ga. We are hoping to make it all the way back for the night's pit stop.

Updates are coming, but thank you for praying. Sorry I have no news to report from hem/onc. "Whoops!" Is all I can say to that.

Love Lisa-

Wednesday, April 28, 2010 5:57 AM CDT

Yesterday was unbelievably exhausting. Aiden was hurting pretty bad, and when Joey pulled the bandage off his back where there bonemarrow biopsy was, we saw just why! It was black and blue and bruised and the site where the needle went in, there is a litteral hole in Aiden's back! We placed a bandaide over it (per their instructions) but wow. Poor kid! Aiden had a bone marrow biopsy done once in the past, but honestly we were so focused on the brutality of it all (just used light sedation) that the appearance of it afterwards wasn't something that stuck in my mind. YIKES. HUGS to all those kiddos/ and people that have blood and bone marrow disorders and have to have this frequently. ouch.

Anyway, we are calling today around noon to find out if there were Mast cells in his bone marrow. So far everything is looking good! They are also sending out a segment of bone marrow to do a fancier genetic testing for Polycythemia Vera. It is a malignent cause for Aiden's polycythemia. (high red blood cells) Polycythemia Vera would be the orginating causes but really only happens to older adults. Even more elderly than just older. So....Whatever it all means, we will find out. There is just almost no chance he has anything primarily wrong with his bone marrow.. so I will report later the final findings.

Cardiology was well.. the longest wait ever for the shortest visit of all time. LAME!!! I don't have time to get into details of that right now, because we are heading out to go to yet another doctors appointment. But basically no pacemaker for Aiden. (details later) I am somewhat satisfied though, just need to talk to my pediatrician to verify the cardiologist's thoughts. I hate to say I don't totally trust them, but I don't.

We are now speeding out the door to go to an immunoly/ allergy appointment. I litterally have NO earthly clue as to what they are doing at this appointment. But I do know the goal is to get a good look at what Aiden's allergies are doing now that he has been off prograf at the 7 month interval. The goal is to then compare it to 1 year from now and hopefully some of the allergies will be gone. Poof! Amen!

Yesterday's quote of the day had to be when Aiden's super fancy shmancy researcher hematologist leaned in while doing Aiden's exam, looked into his eyes and called him a a puzzle. A "beautiful little puzzle". She had so much compassion in her eyes as she held his head in her hands. She just stared at him and shook her head. I knew she wants so bad to figure him out. I know she wants to bad to make him 'her patient' so she can cure him from this. I love her. Joey turned to me and said, "If all the doctors cared that much and were that serious, everything would be different."

SO here is to my Beautiful Puzzle.. Aiden, you were perfectly made and I love every speck of your confusing little body. We WILL make you better. You WILL run and play in the middle of summer and you WILL have energy in the fall. I just know we are getting down to the bottom of this. I love you Aiden, and am so sorry you have been a pin cushion and been through so much.

Onward to the next appointment-
Lisa

(with a short sleaved shirt in 39 degree weather. where is a laundry mat!?)

Tuesday, April 27, 2010 9:43 AM CDT

Aiden is really sore and hurting pretty bad today. Lots of tears this morning, but like always he is pushing past it and working hard to not let it get him down.

I saw Dr. B this morning and got the wonderful news that Aiden's liver biopsy was perfect. No signs of scaring, or inflamation or rejection. 7 months with no prograf and we are still doing good. Amazing. They are planning on tweaking the rapamune and even wean him on a lower dose so he is as minimally supressed as possible. We will discuss that plan on thursday at clinic.

In about 1 hour we will be heading to hematology/oncology clinic and meeting Dr. Kalfa. We are very certian this test (bone marrow biopsy) will be just fine. It was really out last box that needed to be checked off before we fully embraced the dysautonomia. Well embrace isn't the right word... more like know our enemy.

Aiden is declining the oxycodine for now, and just asking for a wheelchair to help him get around this giant hospital. Currently he is watching Star Wars and eating saltines. What a brave brave boy. I just am in awe. I ask myself, how would I react in this same position? He is so brave. He is our little Jedi. Brave little Jedi.

So today we are somber and nervous. Ready to meet with the doctors and get it all over with. I am just sick at my stomach ready to hear the 'all clear' from hem/onc. And gearing up for a tougher discussion with cardiology. Leaning on our faith. Reminding myself to just let it go and just search for some peace.

I will update later today, hopefully from our hotel room and not from the hospital. I very much appreciate the prayers.

Believing,
Lisa

Monday, April 26, 2010 11:25 AM CDT

Aiden is out of the procedures. He has done very well. There was no complications. He is sore from the bonemarrow biopsy and he says his throat is a little sore from being intabated and scoped. The procedures lasted 177 minutes. (yes they timed it to the minute?) I was very pleased to hear from his GI that the preliminary pictures from the scope looked hugely improved. We did see that big bad tear from 2 weeks ago. Holy cow. It was a Mallory Weis tear, and I can see why it bled so much. Our wonderful GI said that the 1 year anniversary of Aiden on no prograf should be when all of the eosinophillic disease will be gone. It is possible at this point that it is gone now, but if not gone it is markedly improved. The allergic disease she said should improving in the next year, although she reminded us that the milk allergy probably won't ever go away due to the severity. But who cares? If we could just get back some of the allergies that the prograf caused like egg and beef and pork and soy and so many others.. it would be a dream!!

We will discuss more on the outcome of us dropping the prograf, but it is officially now charted and marked that Aiden is "Allergic" to prograf. This bonemarrow biopsy will be the final thing that we eliminate and they can officially say they think this was a nuerotoxicity to the prograf. Dysautonomia caused by prograf. Possibly just one sideeffect that is unique to Aiden, maybe they will never see it again, but our doctors here said, there is a chance they might and now they will be able to help a child in the future that is suffering from it. I pray that is true. I am so thankful that even though all of this has been rare and never seen... they are still working to help Aiden and help other children in the future.

Aiden is very sore from the bonemarrow biopsy and from the liver biopsy. But is doing as well as can be expected! He even sent Joey out to buy him some Burger King fries. His first meal since Saturday! YAY Aiden!

So we now await results from all the tests. I am soo thankful the worst of the visit is over. We still have to go to hematology clinic tomorrow as well as cardiology to discuss the pacemaker. (dum da da dummmmm) Although I think after all of this, there will be no talk of pacing just yet. His heart rate was 50 last night. Not too bad, but still really low. They did do atropine during the 3 procedures to keep his heart rate up, because it wanted to drop super low while under anesthesia.

Aiden also has appointments with immunology/allergy and we will hopefully get an allergy plan in place!! I am so excited/ nervous!

Anway, I will probably update again this evening on this page. THANK YOU for checking in and praying. We officially are down both of our phones. My phone is in Georgia and Joey's cell is having issues. If you need to reach me, I think email at this point will be best.

Love and relief,
Lisa

Sunday, April 25, 2010 8:16 PM CDT

You know, I just don't really know what to say about today. I mean, the check in process was simple, the orders were all waiting for us, but included in those orders was Aiden to have an ng tube. For people lucky enough to not be familiar with that, it is a tube that is inserted in your nose and then down the back of your throat and into your stomach. Aiden and most liver kids have them at one time or another. They are awful. It feels like you are choking when they insert it, and it is the reason why to the day Aiden won't let anyone touch his face.

So when they said they 'had' to do one, I flipped out.
NO.
NO.
Uh no.

It makes me really frusterated that it was ordered before they even investigated whether he needed the ng tube to help him take the yucky tasting medications. I don't know. Maybe the ng tube is where I am projecting all my frusteration, but it just did me in.

It is hard to be in an unfamiliar hospital with unfamiliar people. I am so comfortable at All Children's. It is like a second home to us. Sure that sounds a little sad when you think about it, but really it isn't. It is a blessing that we have so many wonderful nurses there that know us, and know him. We have our pediatricians and all the doctors that see him so frequently. So maybe when we come here I just get a little nervous that since they don't really know us, they will do stupid things, like ordering ng tubes.

So the ng tube was not done because... well, I just can't tell you why. (my secrets can't be revealed with out getting myself in trouble) But lets just say, I ummm 'handled' that. Aiden drank all the nasty stuff, and he has 'cleared out' his system. He has been a trooper and I am so proud of him!

So once that problem was handled, we then had problems with his port. 1 1/2 years later that thing has been so much grief for him. It didnt' flush, she missed the port, and they had to poke him over and over. Finally after him begging them to quit, they placed the numbing cream back on him, and waited for the IV team to come. Those ladies were wonderful. They just knew exactly what to do, and they got it working. Aiden became very light headed and half fainted. It was scary to watch, but it doesn't suprise me with so much emotion and so little food.

Labs were drawn and then they came back wonky. I didn't even have an urge to get a copy or find out why they were re-drawing. I don't care. As of now, I just don't care. I can only just focus on him. I signed all these consents for anesthesia and bonemarrow biopsy, and liver biopsy, and scope and colonoscopy and bla bla... It has been a day to forget. And just think, tomorrowe we get to do it all over again.

I am sorry I am cranky and having a hard time putting a 'funny' or happy spin on this update. But the day has finally come to a close, and we are finally resting and ready for sleep. Aiden has discovered a new game. Battleship. The Hawk family was having battleship wars in the room. The nurses were laughing at how competetive Joey and I became. It was a lot of fun, and a great way to keep Aiden's mind off the hunger. And a good way to keep my mind off what is to come tomorrow morning.

So. Tomorrow morning, Aiden will be going into the O/R around 7:45 AM. We STILL haven't gotten a room at the ronald mc donald house. The wait list is just so long. So Joey is staying at a hotel about 15/20 minutes away. Hopefully they can get here early enough to hug and kiss him before he goes in.

I don't care how many surgeries or procedures or events your child goes through, it is always difficult saying goodbye when they go off to sleep. I hate it and feel so far away from him, when he is back there with out me. Please say a prayer that it goes well, and that it reveals all it needs to reveal. (hopefully everything is normal as expected!)

I will update tomorrow.

thanks for the prayers.. We are one step closer to figuring this little guy out. I know we will get there.

Lisa

Ps/ I don't have my cell phone it was left at Joey's parents house by accident. So if you need to reach us please call Joey.

Sunday, April 25, 2010 6:47 AM CDT

Day 1- of course we traveled on a day where the entire East and south were soaked in rain storms and winds and tornados! It is tradition at this point to have a little difficulty on our travels, so lets just hope that was the worst of it. We were in the car for a good 14 hours and every moment of that was with loud pouring rain, and gusting and whipping winds. My ears were ringing when we finally arrived at our overnight pit stop. But we were still laughing. The boys and I managaed to lock Joey out of the van and make him dance to re-enter a few times. That is always an old favorite.

Other than the wet travels not much else to report. Today Aiden is not allowed to eat. This is just the worst when you are traveling. Joey is going to the van and concealing any evidence of car snacks. Aiden is such a trooper. He is so nervous about this appointment. Tons of questions about anesthesia and his port. He is very concerned about who is going back with him, while he falls 'asleep' and who will be there when he wakes up. I can't even imagine how scary this is! I am such a wimp, I just get weak in the knees thinking about doing some of these things Aiden has to do.

SO we are somewhere in Kentucky and are about to head back on the road. Thank you for checking in on Aiden and the family. Please pray for comfort today for Aiden. He will be doing the big 'clean out' of his GI system in preperation for his upper and lower GI scope. We will arrive at the hospital in just a few hours from now. Please pray for peace and a pain free experience for our buddy as they will access his port and get him started on fluids.

OK well Joey is snapping his fingers.. gotta keep on a schedule folks!

Love and prayers-

Lisa and the Hawk 'boys'

ps/ congratulations to myself for making it to WORLD 8 on super mario Brothers. I deserve some kind of mom award, playing these games "for" my child. (can you hear Joey laughing at me?)

Thursday, April 22, 2010 8:34 AM CDT

Hello All!

I sure wish I could just post an update and say, "things are great!". I can't post that YET...We are getting there.. just needs a little more R and R.

Aiden has been home from school all week. It was a decision his doctors made for us, but now looking at him, it was the only choice to make. He had a wonderful day sunday, and yesterday was some what improved as well, but otherwise we still have a way to go before we are bouncing off walls again.

Emotionally he is 8. It isn't the same anymore as having a 2 year old go through a trauma. An 8 year old handles it, absorbs it, completely differently. Ironically (not) the parenting books just don't touch much on re-traumatization. Maybe when I am old, and have gone through this process at all stages, I can write a REAL parenting book. One that talks about things other than colic and how to potty train.

Trying not to tangent off.

So back to Aiden, he is working through talking about his feelings and I am just so proud! We listened to Haley's music and it was such a great example to him on how to 'get it out' of his system. We told him he could talk to grown ups, his friend Hannah, draw his feelings, paint, journal, sing, make his legos act them out.. but he isn't allowed to mimic his mommy and bottle the feelings up.

Years ago I met with a fantastic therapist who explained to me the difference between post traumatic stress vs depression. Neither are something a person should ever be ashamed of, but they ARE different. Once identified that I was (then) having symptoms of post traumatic stress syndrome, it was incredible to come up with techniques to work through it. You are currently reading the technique I chose. I write. I have always written. I have written well before I have children, but now I write for therapy.

One of the techniques she told me was to 're-write' the outcome of the traumatic event. So for example:

trauma version 1

Aiden had a major bleed. He went into septic shock. Aiden couldn't recognize people or times/dates. Aiden almost died.

re-written trauma (version 2).

Aiden had major bleed. He went into septic shock. Aiden couldn't recognize people, but that was a great way for us to indicate it was more than the blood loss.. Aiden survived and is doing much better. This isn't likely to ever happen again.

Re-write it. Do you ever have that 'self talk' when you are driving? Someone almost rear ends you.. you say to your inner self, "wow they almost hit me! I almost got into a wreck" We do it all the time. We talk to ourselves constantly. We reconfirm truths and even untruths. Something like the rear ending example may not be detrimental. but believe me.. the trauma example I gave can be. Reliving a trauma that parents of chronically ill kids do, can be life changing. People get stuck there. Forever. And it isn't their fault! They are traumatized.

Ok sorry for lesson 101 of post traumatic stress, but I have a point. Bear with me!

So, now I am a mommy. I know how to recognize symptoms in myself, but now, I want to pass this along to my child. So many times children with chronic illness are just 'chalked up to' being resilient and capable and just better than adults when dealing with things. But is that fair? Was this ONLY my trauma? No! This was actually Aiden's trauma. This was HIS body, his life. And I make that clear to him that it isn't about "mommy".. this is about HIM.

So he has chosen a drawing/ quiz journal. Oh and let me tell you, it is amazing! I am just amazed at how well he has taken to this. The journal was given to him by a child life therapist. I won't share details of what he has drawn and written, because that is his private thoughts.. but it has been very very helpful.

Instead of holding those things in, he is now showing me his journal, sharing with me. Talking to us about it. Talk about brave! I am sooo proud of him. He came to me yesterday and said, "I am scared of waking up from my scope with out you there." WOW! What an incredible verbalization of his feelings. So I told him we would talk to his doctors and ask if I can be in recovery the moment he returns. I didn't promise that they would do it, but it was a great way to create a plan to help with one of his fears.

Ok sure, this all seems basic. But I promise you... step in my shoes and it wouldn't be so easy to do. This is all hard. It is powerful and deep and intense but when he sets that journal down, he sets it all aside. He runs off and plays with full abandon. (Just as his mom does after she is done sharing here on my caringbridge journal.)

I am thankful for my medical friends I have met along the way who have advised me on how to HELP my child deal with the realities of their feelings. I so appreciate it. I think these children are brave and amazing. I do think children are resilient but I also think it is a crime to assume they have 'moved on' before they actually have. AIden is laughing and smiling again. He told me last week, "Mommy I am down in the dumps". And this week he said, "I feel better!"

Our family leaves in 36 hours for a 1000 mile road trip to yet another hospital. Aiden will be admitted to the hospital on Sunday at noon. He will have to have No food for over 2 days due to the full GI scope. Once he is in the hospital they will access his port, place him on fluids, and get him ready for his early Monday AM procedures. He will then have a bone marrow biopsy to rule out a rare blood disorder called Hyper-eosinophillic syndrome, he will have a liver biopsy and he will have a full upper and lower scope. Aiden will recover in the hospital for 2 days. After that he will come back to the hospital for more testing and doctor's visits. We hope to squeeze in something super fun in the middle of all of that, just haven't figured out how or when. But trust me, we will.

I will of course be updating and posting all the information I can. But if I am unable to get it up here, I will when I can. In the mean time, just keep praying for all of us. Pray for protection for our travels, and of course that whatever needs to be revealed on the tests, is revealed. Please pray for Aiden to have a pain free and positive experience, and pray for the rest of us to have some peace.

I can't thank you all enough for the support and love you have shown our family. Thank you to the members of Perry United Methodist Church for the love offerings you have given us. Thank you to our friends who have brought us meals this week, and thank you for the prayers that you all have said.

I know each thing we do, gets us a step closer to helping Aiden with the right medical choices for an even more full and wonderful life. We are soooooo blessed. (this is not a cliche, this is not something I say with out meaning it) We are so blessed.

Love to you all!
Believing,
Lisa, and the rest of the Rambling Road Travelers

Monday, April 19, 2010 6:40 AM CDT

Today is Aiden's 8th Birthday.

I remember at 10:16am April 19th 2002, the pure exhaustion I felt when they finally handed over that little bundle to me. I was induced into labor on a wednesday and finally on Friday morning Aiden decided to make his appearance. He was so fat. Infact measuring nearly the same heigth as Mason when he was born, Aiden had a good 2 lbs on him. Aiden was 9lbs of pink rolls and white shiny hair. He was actually EXACTLY as I had imagined him when I was pregnant.

It wasn't until the next day that things began to go south on the whole 'happy feelings' of the event. The story of diagnosis and sickness is for another day and another time. Today I want to look back at all the wonders of it all.

It is hard to capture a mother's heart and share it in word. I guess I just will say that all of those dreams I had in a son were so surpassed. Sure there is the whole 'medical' part of the story... but "WHO" Aiden is, well, that is above and beyond what I imagined.

Aiden came home from his birthday party yesterday, Mason was sitting on the floor putting on his best fake sad face and with out prompting, Aiden leans over and says, "DO you want to help me open presents?" What 8 year old does that? Mason hugged him and helped him open his gifts. Aiden let him have 'first turns' with his new toys. It just spelled out the heart of Aiden. (Trust me, if it was the other way around, Mason wouldn't have been as gracious! lol)

I know, he has been through a lot. I know he has seen things and lived things most people NEVER see or live through. It is a miracle. But that part isn't what I feel most amazed by. It is the fact that when they told me 8 1/2 years ago at my ultrasound, I was having a boy, that I was FRIGHTENED! BOY? What? What would I do with a loud cranky smelly mean ole boy? (yes I grew up with 3 older brothers) And now 8 1/2 years later... I wouldn't want it any other way.

Brave, couragous, strong, resiliant. These are all words that describe Aiden. BUT they are also words that describe Aiden during all the trials and difficulties he endures.

Today I would rather just say that Aiden is Sweet, kind, funny, loud, doesn't judge others. He is honest, considerate, an encourager, and a little scientist. Aiden is affectionate and cuddly. He loves his mommy and thinks his Daddy can do no wrong. He loves dogs and penguins and legos and video games. He tollerates baseball, but loves playing with his fellow baseball players. He has a zeal for life, a passion to live out loud.

He isn't just brave in the face of sickness. Although he is! He is still more than that. He is so much more than his disease. His life is so much more than hospitals and doctors.

When Aiden grows up and looks back on his childhood I know he won't say "every vacation, every trip was to a hospital." He will instead remember the journey we took to get there. The road trips in the mountains, singing and laughing. Swimming in hotel pools and eating at rest stops. He will remember that his family loved to be a part of it with him and he was NEVER a burden. It may not be Disney world, but we will find the joy in it all, because it is what we have been given.

Today he is wiped out again from all of yesterday's excitment. He is laying around and getting his strength back up. I am sure it took a lot out of him, but to see that smile and hear his loud laugh was just what the doctor ordered for all of us. (ok not techinically since they told us NOT to have the party.. but details details)

Thank you for coming to Aiden's page and celebrating this amazing kid, with us. Just once a year I get to make this page a big momma brag. I can't help it, my heart explodes with love for him. I feel so thankful God placed this child in our lives.

Happy Birthday Aiden. 8 years old. Daddy and Mommy love you. We are so proud of you. We couldn't imagine you any other way. You were wonderfully made and perfectly placed in my arms 8 years ago. Fat, pink and wrinkly... just as I had imagined.

XO

Thursday, April 15, 2010 1:40 PM CDT

AIDEN IS HOME!!!

I am HOME!

Tonight I will sleep in my house with all my family sleeping safe and sound. This is just the most wonderful feeling.

Thank you for all the prayers.. all the support. I all the encouragement along this scary road. All the bad stuff is put behind us, and now we look forward and onward.

Thank you again!

Now off to snuggle BOTH my boys on MY COUCH!!!!!

ps/ thank you to everyone who made our homecoming so wonderful. For the meals that are being arranged, and the help with cleaning, and my mom and dad for doing our laundry.. I can actually breathe, relax and just sit for a while. THANK YOU!!!

Love Lisa!

Wednesday, April 14, 2010 4:18 PM CDT

My sweet got outside in the sunlight today. First time since last wednesday. Oh the sun made his eyes squint.

And so he closed them. He rested in the glorious sunshine eyes closed basking and taking it in.

It was too much for his weakend body to take so he laid in the grass. Soaking it up fully.

But that became boring so he made a whistle out of grass, and blew the most simple and sweet little sounds.

He blew and blew and we laughed together. We sat and talked about sunshine and life and how beautiful things are we forget to look at.

As he picked through the thick grass looking for yet another perfect blade to use as an instrument, a tear sprung to my eye. This was a moment we very well couldn't be having if only a few things were different last thursday.

Written by King David:

"Thank the LORD, my rock, who trained my hands to fight and my fingers to do battle,

my merciful one, my fortress, my stronghold, and my savior, my shield, the one in whom I take refuge, and the one who brings people under my authority.

O LORD, what are humans that you should care about them?

What are mere mortals that you should think about them?

Humans are like a breath of air. Their life span is like a fleeting shadow.

O LORD, bend your heaven low, and come down. Touch the mountains, and they will smoke.

Hurl bolts of lightning, and scatter them. Shoot your arrows, and throw them into confusion.

Stretch out your hands from above. Snatch me, and rescue me from raging waters and from foreigners' hands.

O God, I will sing a new song to you. I will sing a psalm to you on a ten-stringed harp.

You are the one who gives victory to kings."
Psalm 144

The tears well up just ready to fall thinking about posting tomorrow that we will be going home. Thank you LORD that we can go home with our son. Thank you so much for more time with him.

Lisa

Tuesday, April 13, 2010 1:43 PM CDT

Ok medical update first:

Today we are 'pretending' Aiden is discharged and home and not on IV fluids. Except he is here in the hospital. Why? Well if you have read this site before you know Aiden can have a 'rebound' admission. When we stop the IV fluids too quickly and his little vessles or brain or whatever is confused, spins out of control and goes back into a dysautonomia crisis. (ack.. the crisis word) Anway and with a dysautonomia crisis comes intense vomitting. And with intense vomitting we may re-tear an unhealed tear.. then bacteria.. then.. then.. (as my friend Kelly finds so funny,)

I would just faint....and die...and fall over

yep. So instead, our very smart doctors who are now probably working off of their own post traumtic stress, have designed the idea of stopping fluids completely while in the hospital and then if he does show one tiny sign of a crisis then.. bam we hook right back up. Good idea, huh?

In other medical news, Aiden is still getting Iv Vanq and IV Cipro to kill any of those little bacterias left that might be floating around his blood stream. I am of course again extra nervous some of it will lodge and cling to his port, but if that happens then we will deal with it then. (after another round of me fainting and dying and falling over again).

They began to limit the amount of blood being drawn off of Aiden since he lost so much blood, but alas his whacky red blood cells have a mind of their own they are now back in the abnormally high range. And his platelets are still 'atypical and large'. AND this is the reason why the child is having a bonemarrow biospy in 2 weeks.

THAT leads me to the next bit of medical news. So. We will be leaving in just 10 days to make our trip to Cinci. I never really like to go. The drive sucks, we can't afford to fly the family and yes.. we go as a family. That is the way we roll. But I especially am DREADING this trip. I mean, I am just now trying to get Aiden back to a place where he doesn't feel afraid of everything medical and whamo we will be in another hospital getting more owies and more tests. I know, it isn't like we have a choice, and it isn't like it isn't for his own good. But emotionally for Aiden and of course the rest of us as a family the timing just stinks.

I will share more details about that trip later, but until then if you could just say a little prayer for Aiden that he will understand that he is so loved and that we are just so sorry he goes through so many unfair things. It is hard to convince him sometimes that it is for his 'health'.. when it feels so yucky to him.

In non medical news (everything feels medical at this point), Aiden's birthday is a few days. His doctor yesterday nearly fell over when I told her he was having a low key gymnastics party. She said, 'NO! Can't you play like cowboys and indians and everyone where 'masks' and bandannas over their faces?'

Hmph.

I know, a gymnastics tumbling flipping jumping party only 3 days after getting out of the hospital sounds like a bad idea. Sigh. I just don't know what to do. Seems sooooo unfair to cancel. So we will just pray for some protection for him. I am only a mom.. I can't make all the mean decisions. I just have to sometimes go with the gut and say "Hmph" to the 'I-am-sick-birthday-party'.

Mason news. Oh little Mason has had a BLAST the past week. he thinks this is awesome. Totally clueless about what all went down last week, and is probably ready to pack his bags for good to stay at grandma and Granpa's and his best friend Ian's house. He has had Movies, chuckee cheese, gymnastics class, icecream and pizza almost every day. He has had 'sleep overs' and fun fun play time at school. So to all the people who think the sibling of the chronically ill child always is in the shadows and gets the shaft.. let me tell you otherwise. I mean, I know it is hard. I know it is no fair that Mommy and "Bro-Brie" (aiden's nick name) is gone.. but he sees us in the evening and he knows we are ok. It isn't a life I would say is simple and not with out it's challenges, but Mason does nothing but bring a fullness to our lives and normalcy and joy that grounds us. His resliancy and his wonderful way of handling all the change just couldn't go unsaid any longer. So 2 cheers for baby brother! We are so proud of you for being so brave.

So that is it for this update. We are ok. We are getting along. I am desperatly afraid of the time when we are home and when this is all 'behind us' and then I will be stuck alone with all these horrific memories, with no reason to share it and no ability to forget it. I am never an anxious person. (which is odd with my level of hyperactivity) but anxiety isn't something I often feel.. and now I am anxious about it. I am feeling afraid of everyone else moving on past this trauma and myself just beginning to face it. But alas, I will leave those deep thoughts to another update.. I wouldn't want to run off any new ~~victims~~ readers too soon.

Thank you again for the support and prayers. It has ment the world. Please know if you are one of my dearly loved friends or family and I have not called or emailed .. it is only because I can't. Call me, and email me... hermie the hermit is beginning to come around. Love to all of you!

Lisa and the rest of the clan

Monday, April 12, 2010 3:02 PM CDT

boy oh boy! What a difference a day makes! Aiden looks so much better. His labs have beguin to rebound and we have a plan! Aiden will be getting the IV antibiotics for the next few days. He will get them until Thursday and if all is well we will be discharged. He will still need time to recover, it won't be our normal jump back to the wild-side for a while. But today he got out of his room and played some games and did some arts and crafts. It has been a good day.

Aiden also had a wonderful activity with his child life therapist who sat with him for an hour painting. They did a metaphor on his feelings. They painted and ocean. Sometimes the seas are rough and rocky and sometimes they are smooth and calm. He said his seas were calm today. He made a boat and in the boat were the people who made him safe.. he then created a mast and on that mast he placed me. He told me and the therapist, "My mommy is on the mast because she is on the look out for me. She always looks out to keep me safe."

WOW. that went right to the heart. I couldn't have gotten any better comment ever as a mother.

So things are improving. I have lots of people from all over the hospital who have come to see Aiden, still in shock at what they heard happened and then very pleased to see him bossing us all around. Correcting med doses and fussing if you get in front of the Tv while he is watching Spongebob.

I am having a teensy amount of anxiety because Cincinnatti is still planned for 2 weeks and now we have learned they will indeed be scoping and looking for a cause. Confirm the tear was what caused it all. So on April 25th he will be admitted in Ohio. I am just not ready for more hospital stuff. Not like you can be ever ready, but I just am still so raw. It just stinks. The bonemarrow biopsy that is scheduled for that monday in cinci will be a little more tricky since he is now spitting out a bunch of new 'baby' blood cells. We are hoping it doesn't mask what they are looking for, or confuse the situation. But I just have to remember God is in control. Nothing we can do about stuff like that.

I also have recieved several emails about sending Aiden "happy mail' or a little card in the mail. We did unfortunatly close down our PO box.. due to finances, but if you are interested then just email me and I can send you our snail mail. (** Mrs. Pam.. we love you and your program.please send me your email.. I wanted to chat with you about this too. XOX)

So all is well today, tomorrow we will be stopping the IV fluids and only doing the IV antibiotics pepcid. They are just wanting to make sure he doesn't have a dysautonomia flare and begin vomitting and then re-tear. I would just faint and die and fall over.. so I am thrilled with them being careful with my Aiden.

Keep praying folks.. this has been one whopping awesome miracle. Yay God!

Love, Lisa (the one on the mast)

Sunday, April 11, 2010 3:39 PM CDT

sorry for the lack of updates. Both Joey and I have caught the stomach virus that Aiden had. On the same night. while Aiden needed us. It was... ugly. I actually had to leave Aiden alone at the hospital for a moment while I was driven home. That was the only time I have ever left him. It was hard.

In anycase, It was a hard moment to get fevers and feel so weak. I am already exhausted on top of all of this and now just feel so emotionally weak, from it all.

Do you know how when you get a fever and you dream, it is sort of that 'fast forward' panic-y type dream?? (am I the only one?) well it was like living a nightmare in my head. Visions of Aiden going into septic shock, his facial expressions, the terrified looks he gave me.. not knowing who we were.. it all just replayed over and over and over in my mind. needless to say, it was one of the times when you close your eyes with wet tears and when your eyes open your pillow is tear stained and new fresh tears seep out of your eyes.

My good friend told me that when she witnessed her child's near death trauma that a psychologist told her you 'may have the urge to retell the story over and over'..It is healthy. You are working through it, accepting it.. I pray that my dreams are NOT MY way of doing that. I want to never relive what I saw. I want this part of my life to be selectivly removed. And so does Aiden.

Our sweet child life therapist came in to give Aiden some projects to work through his fears. Aiden confessed he was terrified it would happen over and over again. He remembers not knowing Daddy and knowing how scared he was when everyone asked him questions and he wasnted to know the answers so bad. He knew me. I can't say I take pride in that. It was an extra burden because his panic expression was only directed to my eyes. Now forever bore into my brain.

So Aiden was given one project that he would write all his fears and feelings on disolvable paper then once ready place it in water and it disentigrates into nothing. I told him it was 'spy' paper and he showed a very obvious repulsion for this activity. He didn't like the idea, he didn't want to let go of his fears. He told me, "You can never hide from the things that scare you."

I just try not to burst into tears wishing that my child 1 week before his 8th birthday wasn't so traumatized and so raw from all of what he saw. He asked me if his stomach will tear again, and blood will come out everywhere again. 500 cc's of blood. A literal bucket of it. How could he not be terrified of this? I am. I am so scared this will happen again and i KNOW it probably never will.

Infectious disease is discussing sending him home on oral meds instead of the IV ones. They 'believe' his infectious bacteria was staph into his blood stream. It is the most common one in your stomach. But I don't like that. How do they know? They cultures didnt grow anything because they were done too early. Now it is too late. how do I go home with a child that can litterally 'turn' on us so quickly and not be terrified?

His labs from today show his neutrophils and white count and cells have taken a hit. He lost 4 points of his hemoglobin but they don't want to transfuse due to the stress on himm. They are sure the bleeding stopped, or is only trickeling.

His electrolytes are off. you all may remember the terrifying November hospital stay when he got dangerously low on potassium and had to do the scary infusion? Well now they are just upping the potassium in his fluids. now at 33 perfect. It made no effect. Momma is making him eat bannanas and rice drink.

Aiden's dysautonomia complicates things. WHY can't his body just work right? Then he could bounce back faster?

But... he did come back to us. He is here. I am so overwhelmed with thankfulness. I love him so much. He is the sweetest boy. If you knew him in person, you would know he is so loyal and sticks up to big monster kids for his best friends. He is so tiny and fiesty. He loves his brother so much. So many times he wished Mason was with him. He is funny and sweet and honest and shares his deepest feelings. He loves to be 'right' and wants so bad to be NORMAL.

One more comment to make. I have so many people to thank.. but one more I want to say here. Thank you so much to Aiden's school Bay Vista for giving Aiden a qualtiy of life HE dreamed of. I am so thankful that this happened this year. It has been difficult and a learning experience, but Aiden loves it. When I was trying to hold him and calm him in the midst of the worst symptoms I began to think of all the things I wanted to do for him, give him... and that came to me. I beagn to cry... We fufilled a wish for him, and now looking back at it, I am so thankful we did.. life is fuller for him. He isn't lonely anymore.

Anyway, I know.. I know. this is a dark cloudy update. It is only natural. And part of the deal. No mom who would witness the things I did, would be able to always just report the medical or good side of things. This is hard. Sometimes this is a very hard life. Often it is joyful.. but today, I will just be honest and share, that it is also hard.

Thank you for loving my child. THANK YOU. I have had the chance to read your words and just feel so blessed that his story is touching lives. I hope people don't see a sad story of a child born sick.. I hope people see a story of a family who loves one another. A marriage that is strong and deep. A family that will not give up and just when we are being pulled at the seams we draw closer. I hope you cling to those you love. Don't take it for granted.. I know I will never.

Go Team Aiden!
will NEVER stop believing.

Mommy

Thursday, April 8, 2010 12:43 AM CDT

Sat noon update

He is so normal. He looks so good.

This morning the final puzzle piece of the past days events was placed. Aiden's pediatrician came in to see Aiden and she sat next to me on the couch. I looked at her just began to cry. I kept telling her thank you. I thanked her for making that choice for the antibiotics for just doing it, because it saved his life. She began to tear up as well, and we talked about the crazy events of that day. Medically there wasn't really a good reason to treat him with those hard hitting atnibiotics. Aiden was obviously having a viral load. She went ahead and drew a labs called the CRP. She wanted to make 'sure' he wasn't septic. It came back at zero. Normal. When she came in that awful day she looked at him, and she said, "An angel on my shoulder just told me to do it"... I began to cry. There was no MEDICAL sign of sepsis.. but she KNOWS Aiden, and just KNEW he was bad off. That choice to just order those paticular medications was the right choice.

As we spoke, Aiden was babbling and telling jokes in the bed. We sort of pulled it together and laughed because inspite of it all.. Aiden was back.

The thing she didn't know until this very morning was that the next CRP that was drawn was 13.3 It was indeed sepsis.. but all the other things happening, (vomitting from virus and the big GI bleed) was masking it. When Aiden's blood pressure was dangerously dropping it was atributed to the bleed. Infact it was him septic. Symptom after symptom had another explanation... but it was because he was septic.

I know I already probably posted this before, but I am really just in awe. Just so thankful.

OK.. so on to today's update. As usual, now that we are back to a more 'normal' Aiden, we are having problems with electrolytes and potassium. Geesh. Suddenly though I am just easy going and not even phased. LOL. So they are now upping his IV potassium in his normal IV bag of fluids, (from 20o 30and then will re test and make sure he doesn't need to get the pottasium chloride. Ahhh the mundaine drama of Aiden's wonky fluid levels.

Who would have thunk I would be happy to see dysautonomia again? Seems kind of funny. (or I am delerious)

To add to weird labs, Aiden's white blood cell count is now showing what it should have shown us during the sepsis.. it is very low so they will be drawing more labs to see how many nuetrophils there are. Sometimes when you have a serious blood infection like that, your bone marrow just halts in the process of cells. So he is actually a little more supressed than normal.

Hmm what else? His glucose is very high and they will also be watching that to make sure that isn't needing some treatment.. but they said it is a rebound effect from the stress on the body.

I am typing all of this and just sort of smiling thinking.. la di da.. I don't care. He is here.. I am fine. It is fine. Geesh If I didn't trust God NOW, when would I?

Aiden's 8th birthday is next week. I can't believe it. How on EARTH did it happen? Like a blink of the eye. I am just so proud to be his mommy, and can't wait to celebrate that day with him. Looks like we will be buying stock in more legos and video games. But it will feel good to be in the poor house for that reason.

Anyway, please keep praying for his blood levels to come around back to normal, for him to continue to grow stronger, and for us to move to the floor soon.

On cloud 9,

Lisa

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

Friday After noon update:

Well the verdict is in. It seems as if Aiden was actually septic and going into septic shock. It was so insane and such a whirlwind, looking back now it all seems so obvious and clear but throwing up 1 quart of blood really threw us off. So here is the theory

Aiden came to the hospital with a virus. He began having a vicious vomitting cycle and early in the night after a few hours of vomitting he had a tear to his stomach. (I noticed a small amount of pink blood in his spit and they charted it at 11:00pm) The tear probably then 'showered' his blood with bacteria from the gut. So meanwhile while he was vomitting he was now building a blood infection from the tear. The blood from the tear begins to fill in his stomach and then by noon the next day it has made him very sick. He was red and hot and developing a VERY high fever (beginning of sepsis) and we still kind of thought it was a virus. By the GRACE OF GOD his pediatrician comes in the room and sees how bad he LOOKS and calls infectious disease doctors. They decide to place him on Cipro and Vanquomycyin (positive and negative gram rods). She orders the antibiotics at 12:30 and at 1:00 WHAMO he vomits a massive amount of blood (sorry for the description here) and we all freak out. His blood pressure bottoms out and his AMAZING WONDERFUL nurse worked her TAIL off to get everything in him. Starting with bolus of saline to increase his blood pressure/blood volume and then she calls pharmacy and orders the antibiotics to the room STAT. She has them hung and running by 1:30.

The sepsis was already happening, we thought the symptoms were from blood loss and virus but instead it was actually sepsis. He was detiorating and then hallucianting. later as it got worse he began to loose abilty to think clearly and didn't even know how old he was or recognize Joey. It was so horrible because he KNEW that he should know who he was, so he began to panic and cry. It was so heartwrenching. His heart rate was sky high 160's blood pressure bottomed out, and he was now not cohearent.

Aiden was going into septic shock. At this point he had already had 2 rounds of the antibiotics and it is probably the move that saved him. The nurse acting so quickly.. but not waiting till later to do it, it was lifesaving.

I want to say something though. I want to be very sensitive to something. I hope and pray that God will use this moment to share something to just one person. If Aiden would have passed.. if that horrible moment were to be our last, I do not for one moment think it would be because God didn't hear our prayers.

I have several very close friends, some who read this site, and one who wrote one of our updates who lost their most precious child in a very similar way. PLEASE KNOW.. that ALWAYS He hears our prayers. That ALWAYS we are loved and cared for..

I sit today and think, Why? Why? And I do not pretend to know. I pray to God to give me the words to explain my heart and I hope I have. If you struggle with faith and you read this real story and think, "oh they all just prayed harder and more, and THAT is why he lived".. please know.. that is not what the Bible tells us. Pray because we Love God, pray because He is our rock, Pray because we Believe and have faith.... but Our loving father sometimes answers prayers in the most devastating way. Sometimes he heals a child through their loss. Cheryl recently updated her site with this very thing... before any of this happened. And I wanted to ooohhhh so badly tell you... THANK YOU for your prayers. THANK YOU for your love.. But mostly thank you to my friend who lived this very thing with a different and devastating outcome and stood by me through sobbing phone calls and through the darkest moments I have had in years. THANK YOu for loving Aiden so much that even in your grief you updated and listened and even advised us. Thank you Cheryl. I know Haley was in Heaven watching our sweet boy.

I know a large amount of readers who come to this site are actually parents of chronically ill children. I know so many of my dear friends whom I have never even met in person are people who understand the pain I have felt watching him slip away infront of my eyes... but for those who aren't, For those who are reading this page because a prayer request sent you here, or you are our neighbor or our friend. I just want so badly to say thank you. Thank you for taking a moment to step into this terrible awful day and support and care and pray and love our son. I am just so humbled and thankful and just ... just so sad it ever happened like that.

He is so much more stable today. His CRP (an inflamatory number) came back super high showing us the mindblowing fact that he was actually in sepsis the entire time. I sat and looked at that number and just gasped. God protected him, and we didn't even know.

I am exhausted. I am not sure my thoughts are coming clearly on this page. I just wanted to update the best I can, at a time like this. I know it will be a very long time before I ever forget the horrors of all I saw. I may never forget... but I can tell you for sure I VOW that I will never ever take my Aiden for granted.

One last request. If you know anyone who is a nurse. (or if you are a nurse) PLEASE tell them thank you. During their shift at their job, little decisions that they make, litterally are bring children back to their mothers. Thank them for Aiden and thank them from our family.

Off to rest and cuddle my boy,

Love- Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

Friday AM

Sleepless in St. pete.

So last night was just crazy. On and off.. one time he would wake up and he would be coherant and know who we were and understand, and then next time he wouldn't. He went from red swelling in the face to pale and gray. I don't know why or what or who. But the general consensus is that Aiden has a whopping virus, and the comibination of being immuesupressed and his dysautonomia made it where his body was unable to react normally. As Dr. Grubb said, "He is an unfortunate child" The dysauontomia causes all of those 'normal' functions we don't even really know are happening, to go haywire.

When you have a normal virus our bodies know to move fluid and blood to the gut to help digestion and healing.. Aiden's vessles and fluids don't do that. When you get IV fluids and antibiotics a normal body knows to place the important things in the vessles and tissues then pee the rest out of the kidneys. Aiden's body doesn't get that. His viens are like straws with little holes in them, seeping out water into his tissues.

On a good day Aiden's dysautonomia effects his body tempature, vessles, heart rythem, adrenal gland, kidneys, and many other areas.. On a good day. Yesterday, the day before and today... These are bad days. So I guess that is why things are so confusing. It is the nature of Aiden's dysautonomia. A disease of confusion.

I can say hands down his mental confusion, babbling, and noise making have been the absolute hardest part of this. Our pediatrician called me last night on my cell to talk about it and said, if it continued neurology would be in to consult. SO far this morning, and I almost hate to say it outloud, he is acting MUCH more normal. Even a little sassy. THANK GOD!! But I learned from last night that it can change. But this is SOOO much better, and for the longest jaunt.

I am hoping and praying that this will soon be a fading memory that he will stablize all around today and that we will continue onward and upward. I can't believe how much this has pulled me back to when he was transplanted, during our old ICU days. I must have been in a fog because I have blocked out so much of the trauma. I keep asking myself, HOW did I watch him code? How did I see them emergently intabate back then? How did I do all of that collapsed lungs and failing kidneys and so many awful traumtic things and ever smiled again!? How have I become this semi-normal person? I feel like yesterday has scarred me for life. How will I ever see him vomit and not remember the horrific blood? I guess that is where I lean on my faith. We moved past this before, we gave it to God before, we will do it again.

As I am typing this, Aiden asked to watch TV. First time he has been awake long enough to watch anything. He has been sleeping for almost this entire process. So now I look at him, a tad puffy still with a wet washcloth on his face and a tiny smile in the corners of his lips watching Phineous and Ferb. I love that little boy. He is my hero for sure.

Thank you for the prayers. I know this will be ok...

Go Team Aiden!

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

Thursday PM

ICU room:

So sorry for lack of updates.. I was covered with doctors, and nurses and people all working very hard to fgure out what was happening to our little boy. I CAN NOT tell you how litterally BLOWN AWAY I am by the amount of prayers and love and just amazing words. I can't thank you all enough.

Things went from bad to worse to now what seems stable.

He is having some confusion. He was unable to answer basic questions, like age, who Joey was etc.. It was terrifying. We had a nice little reprieve, he woke up, hugged my neck kissed me.. it was like the most beautiful moment ever.

Now unfortunatly he is confused again. We aren't sure what this means and why this is happening. I am praying that it just goes away. They have tested amonia levels they were normal. They aren't sure if he was just a little 'shocky' from the blood loss, or if he is having some kind of emotional thing where he is regressing. I can tell you that THIS has been even scarier than the blood loss.

SO they think that he had a "Mallory-Weiss tear"

basically his stomach lining tore from vommitting so hard and so much. His clotting factors were a little longer than they should be and his blood wasn't clotting perfectly normal. They are running serial blood levels to see if he has more blood loss.. so far it has show that has stablized. They will test again at midnight. If they see more loss he will go into an emergency scope and possible surgical repair. Tomorow they may still scope but if he is really well they probably will continue to watch him.

This is like living a nightmare. Joey is with me, Mason thinks he is having a sleepover with his best friend Ian, and we are taking turns just watching and being awake for the moment he stirs and wakens. He has been waking very disoriented and confused and I want someone to be able to calm him down so he doesn't panic or get more scared.

Thank you for the overwhelming prayers. I have sat and read them with tears just falling out of my eyes. I thnk I have cried more today than in months.

I know God has a plan for our son, and I am trusting Him completely. Our faith will not be shaken, and neither will our hopes.

Love to you,
lisa

ps/ thank you cheryl for your updating, Faun for coming by and bring us a goody bag, Michelle for taking care of my most precious other child, and Kelly for sitting with me all day. I love you guys

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

Previous update below

PRAYERS FOR AIDEN.....1:45 PM update

Aiden just vomited about 500cc of blood. He is being transferred to the PICU. The doctors are not sure what is happening, and Lisa is, understandably, frantic.

Please be praying for this sweet, innocent little life. Please pray that God gives him earthly healing.

Lisa- I love you my friend, and you know how much I love Aiden. When Aiden feels better, I am going to be hysterical....but right now, I am calm and I am here for you in any way that you need me.

Cheryl, posting for Lisa

Wednesday, April 7, 2010 11:56 PM CDT

His fevers are climbing there is a concern he is having line sepsis.. I am just sitting her begging God to just bring us back to last week when he was doing well, strong, and not here. There is a real problem with running IV antibiotics because he is allergic to two entire families of antbiotics that treat those type of infections. The one that reallly would be perfect for a very true sepsis is sort of our only option, but it isn't any joke. SO they are talking about running him on Vanquomycin.

Doctor will be coming in a little bit. I feel silly that we were sad about missing his student of the month breakfast, and now it has gotten so worse, I just want him to be ok and back to his normal self.

I am exhausted and sleep deprived so I might not be making much sense. Please pray that God's hand is laid on Aiden and that we see that amazing spirit wake up from this yucky fog.

Much love
Lisa

check back frequently, I will be updating.

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

1Am update wed night

I can't believe I am typing this, Aiden has been admitted. I kind of knew this was coming. This morning he was barely up and moving, but he rallied and then he had a pretty good day.. but in the back of my head I just kind of knew something was off.

SO around 7:45 he began vomitting, and it just got totally out of hand. He vommitted over 30 times in a few hours. It was horrible to watch. Even as they were placing the port in his chest, holding it still, he had to lift his head to be sick. Poor baby.

I am not exactly sure what is going on. I suspect this is his dysautonomia.. I will know once I can get my hands on some labs. Since it is 1 AM.. and we aren't even in a room yet, this is going to be LONG night. No place for momma to lay down in this new fancy ER. So this really stinks.

I haven't even digested how I feel about all of this.. but Aiden has. After the IV zofran kicked in, he cried a little cry and said, "I am down in the dumps." and closed his eyes. Oh.. the nurse and I just moaned for him. So Sorry buddy. I am so sorry.

Tomorrow morning Aiden was going to attend a special breakfast at school to accept his award for 'student of the month' at his elementary school. He has worked so hard, learned so much, and we were so excited about this special day. We are ALL 'down in the dumps' that we will miss that.

I will update when I know more, pray for my Aiden. I am sad that HE is sad. As a mom, THAT is the worst part.

From the 'big house',

Lisa

Wednesday, March 31, 2010 10:42 AM CDT

Did you think I forgot? Here I am! Getting ready to update again this week. It technically would have been sooner, however like all good 'holidays' the Hawk family has, things didn't go as planned. The stomach bug has taken little Mason as it's victim. Today we are on the mend, living in our jammies and moving very slowly.

So I had this 'great' plan. I was going to take this time and look at my journal history and post some old updates and do a little 'memory lane' type of update. So naively I went to the journal history. It is like a vault that exploded all of my secrets and quirks and the 'deep' workings of my mind. HOLY SMOKES! I kept reading, and laughing and crying and just sitting there in shock at the things I have divulged on this page! Seriously, sometimes I would read it and think, "what was I thinking?!"

In any case, some of the updates were terribly raw and difficult to read, yet most of them were actually wonderful to revisit. We have come so far! I especially loved the update about our trip to see Dr. Grubb for the first time. The whole road to our Dysautonomia Diagnosis is actually incredibly inspiring and moving. I know I have been in a tremendous form of denial over the years, but reading how it all 'started' was almost a healing thing for me. I remembered when it was a relief to FINALLY just get an answer. It simplified the whole process for me. We may not know much more than that, but what we did learn has made for Aiden's life to be TREMENDOUSLY better. 5 hospital admissions in 8 weeks was our old normal... now, we have really improved. We aren't cured, but we are getting better. Amen amen!

So back to the journal history. I considered re-posting the update where we had lost Aiden's beloved Toby train and how we found it... I thought about reposting the update where we had Aiden's first day of homeschool Kindergarten and how happy it was. I went down another road and really really was tempted to post some of my favorite rants and complaints. (Funny how they all are the same today.) But instead.. I am going to mark today's "Memory lane" with my all time favorite update, the one I think I get more comments about when people meet us for the first time. So here it is.. in memory of my sense of humor (I fear I lost it) I am posting my favorite "funny" update of all time.

Enjoy!

"July 18th 2007

Super Joey has been saving Florida's citrus. Yes, a lot of people ask me. "what does Joey do for a living?" And everytime I answer, and he is in earshot, he usually bursts out laughing because how grossly wrong I am. But NOW I get to tell you through a link!

http://www.tbo.com/news/money/MGBWK78Y14F.html

Joey is the inspector of the trees looking for dangerous pests that can damage our state's agriculture.. I like to call him "SUPER TREE SAVER" or "Fruit Fly Tamer" or "God's gift to grapefruit". Of course because of the issues with this fruit fly, he had to work 7 days in a row over the weekend etc� Who would have thunk a little fruit fly could cause so much trouble??

SO That is Joey.. my hero. XOXO

Anyhoo� Mason did his Yoga last week. He loved it. Unfortunalty I tried and tried to get some cute photos but I managed to get the same shot about 15 times. The room was dark and they were playing yoga music and I guess my camera flashes unofficially were "distracting"� So.. I only have one to share.

This week I will get some better ones. Of course I have NO earthly idea how I will even MAKE it to yoga with him. Wednesday Mason has his follow up MRI scheduled. (I am not nervous.. I am not nervous.. I am not nervous. ) To determine if the lesion/ cyst on his cerebellum has grown. Also to check out the myelin changes. If there is more changes in his myelin then he officially has a demyelination.. if it is the same over time then we will assume it is some 'damage' to his brain from unknown causes. (and who cares why!? As long as it isn't worse!) Honestly I am SOOO certain that nothing is worse up there, in his cute little head, that I just can't even fake it. No I am NOT looking forward to the anesthesia, the IV, the test, etc� but I just feel GOOD about the results. Honestly he is just doing so great that it would almost go against his physical symptoms to see more problems up there. But still pray� we always could use prayer.

I learned long ago from Aiden, Look at the child.. not the tests. The tests are just tests.. look at the child. (of course this is easier said than done sometimes). So just looking at Mason I would say.. he is doing really good!

So after his MRI on Wednesday (which is at 1:30) I then have to pack the car for our "vacation" (more on this later). Then have everything ready to leave by the morning because Mason has double therapy (aka Yoga) on thursday. Then we leave town from there to pick up Joey to drive to Georgia for our first leg of the trip. SO that is why I think Yoga won't happen this week� because I know that I am a supreeme procrastinator, and that I will leave it all till Thursday and pack in a mad panic. (like I always do)

Hey listen I have better things to do than pack and be organized.. I have doggie fashion shows to put on!

Yes this is Rolex wearing his "smart glasses" as Aiden calls them. We spent an abnormal amount of time taking photos of rolex like this. Lets just say, Aiden and I were really into the whole "making rolex talk like a smart person game". Ahhh to be a stay-at-home- mom. I SWEAR NO BON BONS and soap operas� just Pjs and dressing up the dog. (all crucial to a child's development right???)

And that segways me into my last topic. Our "vacation". I only "quote" the word vacation because c'mon let's face it, we are driving to a hospital to speak to specialists about Aiden. Not EXACTLY a vacation, but we will make the best of everything we are given. So, Like I said previously we will head to Georgia drop Rolex off with Joey's parents, get a little shut eye and then head up to TN on Friday morning. We will be staying in TN at Angel Haley's home for a few days then heading to Cincinatti! When we are up there we will get to visit some other liver friends (yes this is what we call each other) and then of course meeting with the docs at Cinci. (pray pray pray pray) I am so excited to see Cheryl (I actually have recently hijacked her webpage so you can have double the ramblings if you click her link). I just love them.

Aiden though brings excitement to a whole new level. He has officially been "packed" to see Kendall, Logan and his 'best friend' Nick. He has every single train he owns, sleeping bags, stuffed animals by the door. To make matters even more complicated, Aiden best buddy Spencer got Aiden "Sea Monkeys". :D Oh how can I possibly explain the confusion of why these floating bacteria have yet to become furry monkeys that eat banannas under the water. (did I mention Aiden was literal?) So yes, Aiden wants to bring his Sea Monkey's to "SHOW" Kendall.

A) like Kendall cares
B) Uhh you want to put WHAT in my car?
C) I was hoping they would all have a sudden death while we were out of town.. wink wink ..

SOOO, Aiden starts in on me.. "Mommy.. can we bring Cutie cutie cutie cutie (these are ALL their names) to vacation?"

"No" - me. Not even willing to discuss this.

"Please please please.. I love them. They are my babies"

"No. what if they spill" -me� oh man I have opened a crack into my standing firm.

"Oh No.. I will make sure we won't spill them. Please????"

"No" me. Realizing no more comments neccesary.

2 hours later and he has now worn me down , I am relieved to see Joey� Joey walks into the door. Being a professional 5 year old manipulator he runs to Joey,

"DADDY!! Can bring my Sea Monkeys to vacation?? PLEASE??"

"Yeah sure! They can be our Mascots!" Joey says and then heads to the kitchen.

WHAT? OUR MASCOTS? ARE YOU KIDDING ME? These sea "monkeys" look like bacteria that float in water.. and now Joey tells Aiden (after I have said NO for 3 hours) YES to bringing the gross little worm things on VACATION with us? Is this a joke?

SO no it isn't a joke. They are coming. All the way to Ohio with us. Joey thinks it is funny. And you know what?? You know what I think is funny?

THIS

THAT is funny� Joey, hunny. I know you love to read the site at work.. be sure to show the "guys" at the office your "Breakfast Club look"� I love you baby and just can't WAIT to travel for 16 hours in the car with you, the kids, and now the sea monkeys! XOXOXOX

Check in on Wednesday, I will update about the MRI. God bless! And go hug your kids today!"

And THAT my dear friends, is MY favorite update. Not much 'medical'.. but it is exactly how my family is. The last 8 years that I have been the mom of a chronically ill child, the defining moments are rarely the 'chronically ill' parts. The defining moments have been our laughter, and our joy. How we can muster so much HOPE from so much pain. The defining moments is that even though my marriage is still a 'normal' marriage, I know that we have passed the big test.. we can still laugh while we cry, we can endure through tragic circumstances.

I am so thankful to have friends who have stuck around through this journey, to have gained friends in the midst of it, and to have people support us on this website and keep coming back to let us know you are praying. Many of the past years have been such painful and scary times in our lives, but we are still here. Still doing it. I may have momemts where I lose my humor, where I lose that sight of the bigger picture... but then there are days like today, where I re-discover my 'funny'. The funny parts of this bizzare wild and beautiful journey.

Thank you for sticking with us, for praying, and for always believing... even when it was really unbelievable.

From our family to you.. we love you!

Go Team Aiden!

Sunday, March 28, 2010 2:52 PM CDT

It is officially Spring Break! And with that, we are nestled in the house with some spring showers. I have been waiting to update ... but I figured I would go for it as, my afternoon went from yard planting/work to sitting on the couch playing legos and watching rained out races.

SO last week I mentioned we had an appointment for Mason with a cardiologist because they heard a murmer or something. I expected to go to the appointment, get the all clear and leave. But, alas.. who am I fooling?? It doesn't work that way, now does it? So we went, Mason got his EKG and then an ECHO of his heart, and the doctor came in and listened to him. It took all about 1 second to say, "He has an irregular heartbeat and his EKG was abnormal." I immediatly got dizzy thinking, you HAVE to be kidding me!? He explained that the irregular rythem is either 1) a normal or benign arythmia that just needs some yearly follow up or 2) something more. He then began to explain how the irregular rythem is caused by his brain and his AUTONOMIC nervous system. I basically began freaking out inside myself. Thankfully the cardiologist (elctrophysiologist) knows Aiden and immediatly said, "I don't think it is related.." BUT he did want to go one step further and do a 24 hour holter monitor on Mason to find out what he was hearing.

So now we wait for results. The good news is, I have been 'round the block a few times and now am almost certian it is all ok. The fact it has been 5 days since we dropped it off, and we haven't heard anything makes me feel that it was good news. So just chalk it all up to yet another 'abormal' thing that 'doesn't mean anything' with Mason. Cysts in brain, growth problems, low muscle tone, now heart arythmia. I do have to ask myself, how many things can be 'wrong' with one kid that doesn't mean anything? I mean geesh.

The good news, Mason was pampered and spoiled with his holter monitor day. And believe me, he milked every second of it.

Dancing (doing the robot) with his wires.

He was singing "Pants on the ground.. pants on the ground.."

I am not sure why we can't go to a doctor and just have it ever be 'normal'.. but I guess we wouldn't know what to do if that happened.

In other news:

Aiden has his dates for the big Cincinnati trip. All we know of as of now is that he must check into the surgery area on April 26th at 7:30 AM. I am very relieved to say that our different doctors will be working together and using one anesthia for 2 procedures. So while Aiden is under, they will do 1) Liver biopsy 2) Upper and lower Scope of his GI tract (with multiple little biospsies) 3) Bone marrow Biopsy . They are combining the procedures and then keeping him in the hospital. He will have additional tests and then we will be seeing cardiology to chat about Aiden's heart rythems.

I recently had to sign for the past 3 years of Aiden's vital signs from hospital admissions here at All Children's Hospital. I think if nothing else they can see some more evidence of what he does when he sleeps. Low heart rate, low respirations. I mean, they KNOW.. but they like to 'see' it. ~~because hearing it for 4 years from the Mom seemingly isn't enough~~ Our pediatrician, called me and said she spoke to our coordinator and passed along what she has witnessed and words like 'scary' were appropriatly used.

So As I learn more about our trip to Ohio I am more and more tense. I HATE it. I hate having stuff like this looming. It is sooo hard to know that your little boy 1 week after his birthday will be put under anesthesia and be sampled and poked and tested. It is hard for all of us. Aiden told me he was scared and didn't like to 'fall asleep' with everyone in the room. He doesn't like not knowing what is happening to him. I listened as he shared his feelings, so thankful he feels like he can. I then struggled with a reply and mustered out, "Will it help if I take you to Toys R Us for a prize afterwards?" (sheepishly asking) and his reply was even more heartbreaking. "No."

I don't blame him. It totally stinks. And like his Momma he doesn't complain often. I am so happy that he trusted me at that time to share his fears. I know how hard that can be, first hand.

I will keep you posted on the details of that glorious 'family vacation' as soon as I know.

crickets chirping... silence on the other end...

Is there anyone out there? OK, so if you HAVE stuck around through my lackluster recent updates, fear Not!

Since it is Spring Break, I am thrilled to say I will be updating this page like a fool. I have photos to share and things to get caught up on! I have been in Aiden's class every day for 1/2 days since he started and it has just eaten up the best part of my day. SO this week.. check back often, It will be a fun time. I am even doing some re-posting to some ole favorite updates.

(ok yes this all means I have no real plans for the week, and my friends are all out of town)

Thanks for checking in on my boy (and his adorable brother),

Keep Believing!

Also below is a link to Aiden's facebook group page. It is a private page, but if you are on facebook you can request to join. Just please include a note that you read his CB page.

http://www.facebook.com/profile.php?ref=profile&id=1374793396#!/group.php?gid=48474681670&ref=ts

Love, Lisa and the gang!

Wednesday, March 17, 2010 3:28 PM CDT

So first let me begin with Mason's awesome results! All of the fancy send out labs were normal. PHEW! He did his follow up appointment with his neurologist and everything seemed ok. There seems to be also a tad bit of weight gain? I have to check with our Wii Fit, before I know how much. Yes sounds silly, but they weighed him in gym shoes and jeans, so I figure our Wii Fit is way more consistant. If he did gain, it would be awesome! In more news, they did hear some type of 'murmer' or 'arythmia' when listening to him. He went to his pediatrician's office and they confirmed it was something very soft/ mild. So he will be going on Saturday to get an echo and EKG to make sure it is nothing. His regular pediatrician isn't concerned at all, so neither am I. ~~I am lying~~

Now on to the next 'bit' of information. I hope you are sitting down. Well it seems like the Hawk family is going to invade Washington DC! I just was asked last night by All Children's Hospital to go to Washington to speak to CONGRESS on behalf of the National Association of Children's Hospitals. Yes you read that right, little ole us, will be going to DC for National Advocacy Day to speak to congressional delegates and mutiple media outlets. We are to tell 'our story' and be a real face for their votes on healthcare.

I am not a very politcal person, I have my thoughts and views.. but I AM very interested in advocacy. Very much so. So this should be a real trip.

If we can managed to rub some dimes together we are praying we can extend the stay and actually SEE Washington. I have never been. (Well ahem, my mom reminded me when I was an infant I DID go... but I don't recall) and my THREE boys would love it. The museums and monuments and everything it has to offer. How exciting.

It isn't likely we will ever or soon have this oppertunity to go to DC. (it isn't on the way to Cincinnati) so we are more than excited. I feel like we just won the Price is Right, or some warped hospital version of the gameshow.

So stay tuned, I am sure I will be updating on the Americana type outfits I pick out for the boys, and of course my red suit so I can storm the steps all powerful. Yes, that was a joke.. but I will have to find something other than flip flops and baseball caps. At anyrate, wow. We are blown away and just thrilled at the chance. Hoping my buddy Aiden can stay healthy and I can fall unconscious for the plane rides.

In other exciting news.... hmmm?.. ok honestly there isn't any other news. Not much can beat that.

I do have news, but it isn't at all exciting, infact it is rather sad. As most of you know our sweet Dog Rolex, (wonderful friend for 11 years) on Valentines was diagnosed with Lymphoma. Our sweet friend passed over the Rainbow Bridge and now is at rest. I hate to have you all ride the gamut of emotions on my page but as usual it is a great dipiction of life in general. It has it's highs and lows.. And this was surely a low. It has been harder on the boys than I thought it would be. Just today we heard a siren and Aiden immediatly said, "Oh Rolie." He had the cutest howl at Sirens. So this is a little farewell to a great dog. He was good to us when we dressed him in baby onsies while Aiden was in my belly, and he was a great shoulder to cry on when Aiden came home sick. We will miss his little ears sticking up in the wind, while going on boat rides. So Goodbye Good Dog, you were a special special friend.

That is it for today.. signing out looking over my shoulder at our loss of a friend, and looking ahead at memories waiting to be made.

Hug those around you, and yes don't foget the furry ones too.

Love,

The Hawk Family

Tuesday, March 9, 2010 3:56 PM CST

So I am getting used to this new school schedule. It has been quite the adjustment for us. Aiden (and myself) are spending about 15 hours a week in school and that is 15 hours for me, that I am not getting my stuff accomplished. Aiden's work load has increased quite a bit, and it has been a bit of an adjustment.

But I say all of this without it really being a complaint. I mean it more as an informative piece. (telling myself that going to school with my 7 year old is fun.. right?) I mean, I have been used to my schedule for years.. and it seems if nothing else, I have learned that I am not great with change. Especially if it cuts into my coffee time.

But again, this is what we prayed for. Sure it isn't EXACTLY what we had hoped for. 100ealth and healing, then him running off to school waving carelessly behind at me. Ok so that may NEVER be our reality. And I am ok with that. (Most of the time) But it is really awesome. It is really great. The other day Aiden's time was done at school, he was packing his back pack with his homework and coat, and muttered under his breath, "This is awesome. I don't care if I only can come 2 hours.. I love school." He means it.

It isn't like he is going to school for the 'fun' times. He is in school for the hardest stuff. Writing and reading. No P.E., no Lunch, no music.. he is there sitting working hard and quietly. And loving it.

I am in his class volunteering and I sit and watch him and wonder. Does he love school because it challenges him? Does he love school because he wants to learn? Does he love it because he is making friends?... Or is it because it just feels normal. Average. Typical. It satisfies an itch he has had for years. He has wondered and heard and wished.. and now he is doing it.

I am thrilled for all of that, and of course would love to make a brag on our little hero.. he made Principal's list this past grading period, and we are so proud. In light of his hard work and his incrediable effort/ accomplishments.. we made a special day trip to Orlando. We techinically went to visit our dear friends from New York, (whose son I have asked for prayer request many times on this page) parents of a liver transplant recipient named Angus and his little sister Maggie. It was so much fun getting the boys together and finally meeting face to face after so many years of online support and friendship. There is just something so special about some of the friendships I have made with my online liver moms. So here is Aiden and Angus.. hero's showing their gun's and scars. :)

And here are the two instant buddies showing their sweet smiles.

What fun!

So back to the school celebration.. after we said farewell to our friends, we took the boys to the dreams incarnate. The Lego Store! What!? that place was amazing! I had never taken them and what fun we had! They just were in AWE of some of the amazing creations and have been begging to go back since.

Above is Aiden at the Lego store. It was really cool. We really don't ever get to have vacations (other than the side jaunts to hospitals) and it was like a day vacation for us. Orlando is only 1 hour 45 minutes away.. but it did feel like another world.

Ok back to the story, I am getting somewhere with this I swear. Soooo... we knew we had to get back to St. Pete, but we were just feeling very much in the 'tourist-y' mood. So there in the same area as the Lego Store, was the RainForest Cafe. If you are reading this and you are a mom with a child with food allergies, you probably already know about Disney's over the top awesome allergy service. I have heard of this for years but been too afraid to ever do it. But with so many of my friends with allergic kids having amazing testimonies, Joey and I decided we would make a try at it.

So what is the big deal? Well... Besides some french fries at 3 fast food resturants, and Sonny's BBQ there is NO (none, zilch, zippo) resturants Aiden can eat at. None. It is SOOOO hard. It is so many things all of which begin and end with, UNFAIR. So.. this would be not just a 'fun' experience like it is for the other people in the resturant.. but this would be a once in a life time experience. THAT is what the big deal is.

We took the chance, got our seats, and requested the chef. He came out and we discussed in GREAT detail how they prepare the food, the ingrediants, the seperate new unused pans. We talked about every thing that I could think of that would make it not work. After looking at the entire menu it came down for Aiden he could only eat one thing. Not a big shocker, he was able to order Baked Chicken and french fries.

I litterally sat there with my hands shaking. I was so scared, although I KNEW it was ok... I was just really scared they would mess up. So, yep in typical Lisa fashion, I told the waiter to get the chef yet ONE more time. Out he came. I was sure at this point he would be so irritated with me, but in Disney style he was gracious and wonderful. I began again. Do you share friers? Do you share utensils? What kind of seasoning will you use? How much experience do you have with allergies? Will you be the actual one preparing it? He answered it all, and assured me that he understood. They understand that my child's life was in their hands. And I didn't want to loose him over some overpriced chicken and fries.

The dinner came out. I couldn't eat, I just couldn't wipe that smile off my face, as I watched Aiden eat out at his second resturant in his life. He said, "THIS IS THE BEST I EVER HAD!" And he ment it.

So many first's.

I guess Joey and I could look at Aiden's life from the perspective of a family with healthy children and think, "Aiden has been robbed of so many things!".. I could be bitter, or mad. It is a fork in the road I often face, (daily at times). But it isn't the right road. This isn't about being 'positive' it is about being real. He is here... and that is our gift. He wasn't robbed of anything, he was given a second chance.

So back to that photo of Aiden and Angus. Those little boys, rough and tumble, funny and sweet. It is all a gift. Sure going to school with my kid is weird. But it is our life! Our life tends to be a little weird sometimes. Yep, talking to chefs and quizzing them about their fry oil.. is odd. No other family sitting next to us had to do that, they just ordered. But odd is ok if it means we are still a family of 4.

Does that make sense? Do I sound like I am making some sense here? I have had the fortune of meeting many new people along the way at Aiden's school and through baseball. It has been so great! But as you can imagine, my FAVORITE question is being repeated daily, "HOW do you do it?" Ahhhhhhhh I will spare you all the answer, as I know you have it memorized. Instead I will just show you HOW I do it....

that face is all I need.

Have a great week,

Hug your kids, live each day outloud!

Lisa
Team Aiden's team mom.

Wednesday, February 24, 2010 2:44 PM CST

Aiden has been feeling so-so. He has been very tired, and just nauseous. In our last hospital stay Aiden had some blood in his stool and they are assuming it is his eosinphillic disorder. I am now wondering if it is what is making him feel sick in his stomach. I don't know.

Anyway, it has been a rough few days. Yesterday he left school a little early and he actually fell asleep in the van on the way home. I dosed him with Zofran and he said he wasn't improving. We skipped school today, I just don't want to run him into the ground and get admitted again. I think it was the right choice.

I know with Dysautonomia, mornings are the hardest. The kids who have similar issues, say getting up and out of bed feels like you have run a marathon. Some of the doctors recommend taking cortef and florinef about 30 minutes before they wake up. I have been having him take this in the evening so I think we will try that and see if it helps. (just re-read that sentence and let me clarify... we would wake him 30 minutes before his normal wake up time, give him his meds, and let him fall back asleep).

In anycase, I am so happy with the school, the class, the teacher, the principal, every smiling face we see. I love everything about it and Aiden does too, but yesterday he dissolved into tears because he was scared he would not be able to keep up physically.

With a child like Aiden 'going to school' isn't only about academics. Infact honestly for me, it is really not about that much at all. Instead it is about social support, life learning, self esteem building, and the non-classwork learning. (asking for help, social cues etc) Aiden has done remarkably well in Hospital Homebound. His homebound teacher is amazing. I mean, after no school for his whole life, we started in a class and were right on target. That just says a lot about his home-teacher.

So we are working out the kinks. Hoping that we can figure out the best way to get him in a class, learn there, and then still be safe and staying healthy.

I am just thankful for having so many ready to help support us and him in this process. As I type this, I can hear his home teacher helping Aiden pick a topic for his first report on American History. It is just precious to know that he can learn and grow even though our path is a bit different than most.

So, that is my school update as of now. Pretty wonderful stuff... just a little scary with him feeling not so well.
We are planning our trip to Cincinnati right now, our transplant coordinator is scheduling the cardiologist, the hematologist and the liver docs to do a '3 in 1' procedure. He will be getting a liver biopsy, endoscope of his GI tract, and then a bone marrow biopsy. We are crossing fingers it will all happen under one anesthesia, at one time. I think they are gonna figure it out, and I am very grateful for that. Unfortunately I just recieved and email and they are requesting Aiden to come to Cinci for at least 1 week. HOLY Banannas! Not sure how that will be humanly possible. SO we will have to work out some kinks there too. YIKES. ALthough I do appreciate them trying to 'get it all done' in one visit. It costs thousands of dollars out of pocket to go to hospitals and do these tests.

So that leads me into another discussion... fundraiser. Sigh. My least favorite topic. Boo.. Hiss..

But I think we will be doing our annual Yard sale again. I know, I know.. I say over and over again, "I will never do that again!" and I swear I mean it.. but the fact is, we have to do what we have to do. There is nothing I can do about it. And we will make it fun. (somehow?)

Maybe I can do some fun carnival type games.. Joey in a dunking booth? I know lots of people who would pay to see that. LOL... hmmm maybe I am onto something here...

Well folks, I will have more updates soon. Hopefully it will be ones reporting that Aiden is back to his frisky healthy self.

Thanks for checking in our our boy,

Lots of love,
Lisa and Joey

Friday, February 19, 2010 7:27 PM CST

MONDAY:

Aiden is HOME!! YAY!

Another update coming soon. Just wanted to let ya'll know!

Friday Update:

OK I tried to hold off on taking down the other 'update' as to not scare off the parents in Aiden's class with such a quick change in the day, but Wednesday Aiden was admitted to the hospital. He has been really tired, and nausious and just struggling. On Valentines day, Joey and cancelled our big date night thinking we were going into the hospital but thankfully we held off. Just not long enough. So Wednesday evening Aiden spent his first night in the brand new All Children's. I wish I could say it was really great or that it was the time of my life, but really. No matter how fancy, clean and state of the art it is.. it is still a hospital. We are tired, bored, and lonely. So yes, as of today, Friday evening Aiden is still here in the hospital.

He has had an on and off few days, for the most part though he is feeling good. Headaches still, and his port is killing him. We aren't sure why, but I know this kid never complains of pain, and he is hunched over when he walks, and asking for tylenol around the clock.

Anyway, so here we are. We have enjoyed the new amenities, the room is huge, but the best part is the the view. So much to look at. (in the old hospital the windows were barely translucent and the view was almost always another wall, air-conditioning unit, or some nasty rooftop with weird vents and pipes.) NOW though, it is really entertaining! We have spent a lot of time propped on the window cill looking out.

Mason looking out the window on a visit to see Aiden

The thrill of the day, a fender bender that kept Aiden entertained for a good hour. (who said, God can't use everything for his purpose?!)

We also have had fun playing legos

and having our best buddy Spencer visit us yesterday..

the boys laughing at the dumbest thing. Spencer's mom and I couldn't roll our eyes harder at their lame jokes. I love those boys!

Today, We got to have pet therapy, even though it was a major effort on my part trying to convince them Aiden isn't too immune supressed to pet a dog. (yes this is the kid that kisses Biscuit on the mouth! NASTY) And while the Wonderful Pet therapy pup was here, his friend Ainsley was visiting him! Ainsley also had a liver transplant in Atlanta and is no stranger to hospitals.

We also have had lots of Daddy time at the hospital too. Tonight we nestled in the other end of the floor to see the beautiful water view, and play a few games of UNO. (might I mention I won? oh yeahhhh)

SO after looking at those photos it looks like a vacation. I could spoil your happy image with the real truth's of the hospital, but heck.. I am in a good mood. Sure lets pretend it is a vacation. (I need a vacation from this vacation)

I was so thrilled to see some of our 'oldtimer' nurses (not that they are old... just well.. uh) One hasn't seen Aiden since he was an infant, and was holding a cup with a yellow lid. She looked at him and said, "I remember you when you were this color! you are amazing!!" Aiden smiled from ear to ear (under his mask). He loves to hear about how yellow he was as a baby, he likes to think he was a young C3PO. So, when you have nurses like that, who wistfully look at your 7 year old and say to you in private, how scared they used to be for him, especially when he started having those scary esophegeal bleeds... and then just get teary eyed looking at how strong and grown he is... it just makes my heart soar.

So no, it isn't a vacation, it is just a mom trying her dangest to make sure he feels as normal as possible. I think I did a good job today. He is smiling as I type this. I am so glad he has a good self image, and a such a positive view on life. I feel proud of him. He is a hero to me.

This morning my friend Kelly who works at the hospital(Hannah's mom) said one of the nurses was talking about how brave he was. They knew he was in incrediable pain last night, and when they checked his port and his chest, he tried his best to straighten up and be brave. The nurse thought he was so cute when she said, "How are you doing Aiden?" and he straightned his back as high as he could, and said, "I am great!" Wincing in pain.

I don't want him to lie, or hide how he feels.. I just think he was answering honestly. He was so happy and feeling loved.

Anyway, that is what is going on in our lives. Also Rolex is sick with lymphoma and we are going to be starting a little blog for him for his last days bucket list. I just have to get out of the hospital so we can start living it up with our favorite good dog.

Keep praying. We need answers to keep Aiden healthy and stable. I want to know he is safe at night with his low heart rate. Please pray his blood pressure isn't getting out of hand again, (it has been very high this visit) and please pray that Aiden is strong enough to be able to revisit school soon.

Thank you so much!

Love,

Lisa
and the rest of Team Aiden.

Wednesday, February 17, 2010 12:38 AM CST

Today's update is a very special update written to a specific audience. Today in Aiden's brand new 2nd grade class, we sent home a letter explaining to the children why he only attends part days and why we use so much handwashing and other changes. In that letter, I welcomed the parents and the children to visit Aiden's page and learn more about him if they chose to.

Dear Mrs Weil's class,

As you can see Aiden has his own little corner on the internet. This site was created to help explain and communicate all the latest news in Aiden's health and in the lives of our family. Sometimes, sadly, Aiden has to visit hospitals and get special medicine to make him feel good. I often write updates from his hospital room, and share photos of all the things we do when we are there. It isn't always a bad or scary time, often Aiden sees his friends in the hospital and plays games and takes lots of time to rest and get well. Aiden has even had Pet Therapy where he has had a dog come to his room and cheer him up. That was a special day!

Aiden has had so much fun learning in class, and getting to know all of you. You have been so kind to him, showing him where to go and how to move from one subject to the next. Soon Aiden will be a pro just like you!

Thank you so much for coming to Aiden's website and if you ever have any questions, Aiden or I would love to answer them for you. He is a brave boy that likes to tell people all about the different things he has learned.

Thank you for visiting.
Sincerely,
Aiden's Parents, brother and Aiden!
Below are some photos that show you some of the things he has seen and done over the years. Enjoy!

Wednesday, February 10, 2010 11:56 AM CST

Oh my goodness.. My poor neglected page! I swear this lapse in update was soley for the reason that we had caught a terrible upper respitory infection and I was, and still am, struggling with it. YUCK! I feel like I have been run over by a truck.

I had fevers all weekend, and quickly was reminded that I am a wimp. (Not as wimpy as Joey, but a wimp none-the-less) I was also again humbled by the children who I have been honored to know along this 7 1/2 year journey in the medical world. I can't ever have a fever and not think of sweet Angel Haley. Fevers daily, pain so intense she couldn't walk.. but yet she sang!? She sang and wrote songs that were funny about being sick. Songs to encourage other children that were scared along the way.

God bless that child. God bless all these children who suffer with illness and smile each day, showing that bravery and strength.

So speaking of SMILING. I have some incrediable news to report. I hope you are sitting down, because it is all so shocking and fast, but just wonderful!

Aiden is back in school. As you all know Aiden began this year for the first time ever attending school. It has been such an important step to get him with children, doing normal things each day, just being a KID! Unfortunatly then in October Aiden began a series of hospital admissions leading him to have to miss school for the past 4 months. Requiring daily IV fluids is just not condusive to going to 2nd grade.

His wonderful homebound teacher, Mrs Fraise, has been coming to our home, but Aiden has missed 'going' to school. So...since Aiden has been IV free for 1 month we decided to put him on the waiting list at another elementary school nearby.

Last week, Aiden got the call that they had a place for him! It has been so amazing. He already knew 2 children in the class, (both kids he has known since he was 2 years old) and knows a bunch of other children that attend the school. The Principal was his old Tball coach! And his new teacher, is really a blessing from God. It has been just the perfect fit thus far!

SO.. the plan is, for Aiden to attend 1/2 days of school. He will go from 8:15 until 11:15. During that period he will have gotten the chunk of the best part of the day for him. He can go on field trips, and special parties. And then in the afternoon his Hospital Homebound teacher will fill in the other classes.

YAY!!! This is just such a relief to Joey and myself. The fall time was so difficult, it was so hard to see this vivacious child lose all of his energy, and become so sick again. It is hard to see him go from full throttle engergy to laying flat on the couch, pale and just too dizzy and weak to play. I am thrilled that we have a plan in place that while he is back in this energetic healthy phase, he is able to be like all the other children.

Now you see that the lack of update, wasn't due to a lack of wonderful news to share!

In other news, as you saw from my little update Mason's MRI testing came back unchanged and normal. That was really way better news than the little one paragraph I gave it.. so I thought I would repeat it once again. The chromosone tests, and fancy shamncy send out tests are still not back. We will follow up with his neurolgist next month. They also want to do an ultrasound on his kidneys just to rule out that being a cause for a lack of growth. I will schedule that when I get around to it. And frankly that might be a few weeks... I am enjoying a break from the hospital.

Life has been really busy and active and full of crazy changes. I am so thankful that we are able to be in a place in our lives where we can bounce back from months of sickness to health with out looking back. I am just thanking God that He has given Joey and I the ability to move forward and not get stuck... for the children's sake. I sometimes look at Aiden and see how even on bad days, he is up and moving in every moment he is able. I want to be like that. I don't ever want to get stuck in the painful days. Each day is a gift, we are so thankful to have them.

Keep checking back, I promise I will be frequently updating!

Go Team Aiden!

Love,

Lisa

Just an old photo of Aiden, that made me smile when I ran acrossed it. Aiden at 3 years old.

Tuesday, February 2, 2010 9:02 AM CST

Only have a moment, but wanted to quickly update you and let you know Mason's MRI was unchanged, and his spine was normal. Praise God!

Labs are still pending. I feel a mountain of relief and am Just sooo happy to know we don't have to worry about any underlying scary things.

CLoud 9.

More update to come...

Love,
Lisa

Monday, January 25, 2010 11:55 AM CST

Aiden got his labs back this week, and I am just so excited to report that it seems like not only is he symptomatically better, but his whacky labs are all improved too! Not to mention his liver is still showing absolutly NO SIGN of rejection from being off the prograf! He has been off of it now for 5 months. I am so happy that we are starting this year out on a better foot.

It seems like it would be so hard to go through this rollar coaster of 'ups and downs' of chronic illness, but honestly it has gotten somewwhat easier over time. I think we are more resiliant and are snapping back quicker. Where as years ago, it was so hard for us to sling back into our healthy routine, for the fear of having hopes dashed when he had a bump in the road.

The past 3 months were difficult. I mean really scary at times, but today is a wonderful day. Labs are normal, and Aiden is healthy. I am praising God for all we are given. Hoping it lasts a long while.

Tomorrow we have a wonderful oppertunity at the hospital. Aiden (with a few other families/ children) will be working with the medical residents (new young fresh doctors!) showing them how to have effective Family Centered Rounds. This will be a new technique used at All Children's Hospital, and they are hoping that they can learn how to better treat the child with respect. I am honored to be a part of this process, and hope these 40 medical residents are prepared for some 'advice' from a mom who has seen a lot of things go wrong. Wish us luck, Aiden gets to be in a hospital bed/room and pretend to be a patient. They have to adress him, speak to him as the patient, instead of as if he wasn't there. He is thrilled to be able to offer some feed back, (aka tell them where they go wrong/ right) and I am soo happy my child is getting the oppertunity to have a voice. I think it can be a healthy roll play for him, give him some control of all the things he doesn't have control over.

In other news, Aiden is signed up for baseball again this season. Try-outs are in a week, although he already made the coach's team (coach daddy). It may sound corny, but I still remember the day when Aiden was only 6 weeks old, having a major abdominal surgery (his kasai) to help repair his bile ducts, and I asked our doctor, "Will he ever be able to play baseball?" What a stupid question to ask! I mean, they just called me on the hospital phone to tell me my child had a disease that was incurable without transplant, and I ask... "can he play baseball?" I am not sure why that was the one question I chose to ask.. but I think I was asking, "can he be a normal boy one day?" Can he get dirty, wrestle in the dug out, climb fences, throw balls, run bases? Will he grow up at all? Will he make it?

So each year, as corny as it sounds, this is the biggest reminder of how far we have come. Spring ball is in the air, and there is nothing like the sight of those dirty cleats in my shoe basket.

Don't take any of it for granted.... each day is a gift.

Speaking of 'gifts' My little Gift Mason, will be undergoing a day full of testing this friday. Please cover him in your prayers. Please pray the 2 cysts in his brain have vanished, or they have not grown. Pray that his spine is healthy, and his labs reveal only things that can help further his already amazing growth. Thank you so much!

God bless!
Lisa

Thursday, January 21, 2010 10:08 AM CST

Aiden Update:

He is doing AMAZING!! I mean it, he really looks like he is feeling great. Not complaining of headaches as much, and his energy is off the charts! He does so well in this weather when it comes to his energy... No need to sweat and get over heated when it is nice and cool out.

We saw Aiden's kidney doctor, and have formed yet another plan regarding the fluid/ peeing issues. It seems that because the vasopressin failed when we tried it last spring, it really showed us he doesn't have the central diabetes insipidus like he symptomatically displays. SO.. Dr. Perfect Hair (don't burst my bubble Kelly) has a plan as of next admittance.

He isn't stable enough for a true 'water deprevation' test so he is going to create a mini version. We are trying to find out why Aiden loses so much fluids from his vessles, even when he is getting it directly placed there with IV's. He said, that all the urine tests he does shows he doesn't concentrate his urine, but he wants to see what happens when we change the amount of fluid intake. Anyway.. bla bla bla.. it may tell us some more clues as to what his body is doing.

It is still a mystery but understanding the fluid stuff (which leads us into the electrolyte imbalances) is really vital because it will keep him safer. We love safer.

On the pacemaker. My time off the site, away from talking medical, in deep thought (that can be dangerous in itself), and in deep prayer over this topic has led both Joey and I into a resolve over the topic. I will not rest until I recieve a GOOD reason, for why Aiden does not have a pacemaker.

I believe this is something we aren't doing right for him, and if I am wrong... then it should be easy to explain to me WHY he doesn't need one. This has yet to happen. So... that is the new plan. My resolution to my child, I will find out WHY we aren't doing this pacemaker.. or get him one. Do you think they are on ebay? chuckle chuckle.

Mason Grady Update

This has been a really stressful and stressful little period for us. I am thankful Aiden is stable, so I can realy dive into denial that I have two kids with issues.

Mason will be having his annual MRI next friday the 29th. We have seen endocrine and nuerology thus far, and will be seeing a GI doctor on tuesday. I want to just start talking about this with a quote from my friend Cheryl... "He is a miracle." I guess I never really understood HOW much of a miracle until I read his orginal MRI and nuerosurgery reports from 2007. We really dodged an incrediable bullet with Mason. Unfortunatly there was testing that should have been followed up on, it wasn't.. a big ball was dropped, but it has been picked back up and we are no worse for wear. (I think)

Endocrine did her measurements and we were so happy to see Mason has grown in the last 12 months. He stayed on the curve at a steady pace... He sits at the 3rd percentile in heigth.. very very small for his age, BUT the fact he stayed the growth is really good. Unfortunatly he has dramatically fallen off the curve for weight. He went from 10th percentile to well below the 0 percentile for weight. he got a 'failure to thrive' diagnosis.

OK let me interject a small rant.

What is with these stupid diagnosises and stupid medical terms? Failure to thrive... that just sounds so.. umm.. for a lack of better term.. NEGATIVE. Also Aiden, when he has an episode, they always use the term.. "crisis".. YUCK! That sounds so.... SCARY! Genetic syndromes that bgin with letters and end with words that I can't pronouce? Tripple yuck!

So, we won't be saying 'crisis', failure to thrive, or any other syndrom other than "Precious/cute syndrome" on these pages. That is resolve number 2.

OK rant concluded.

So... because mason isn't gaining weight for his age properly we need to still figure out why his nutrition isn't being 'absorbed' properly. Once it is absorbed properly the endocrinolgist strongly believes he will shoot up in his growth. He is just not nurished well.

Now, that of course puts me over the edge because Mason gets 4 (sometimes 5) cans of pediasure a day. This is 200 calories MORE than his daily needs. PLUS he eats. He eats pizza, chicken nuggets, fruit, icecream sandwhiches.. at this point he should be a fatty.

This isn't the case of a 'fast metabolism'.. we are sure of that... but instead still might be another piece of evidence there is a metabolic disorder at hand. makes logical sense to me.

Over and over and over again, when the doctors see Mason's file they say, "it is wonderful he isn't cognitively delayed." Yeah no kidding. He is so blessed. This isn't life threatening, this seems to not be progressive, and he has a wonderful life. So this is the case of we just can enhance his life with some answers/ diagnosis.

SOOOOO next friday this is what the doctors have ordered THUS FAR (still have GI to decide what they will do)

MRI with and without contrast of Brain, C. Spine, Thor. Spine, LS Spine.
Labs: CBC, CMP, Thyroid panels, Growth hormone panels, organic acid, lactate, carnatine, micro array chromosone study

He will be under anesthesia for all of it, so hopefully he won't have too much trouble. I will admit, it does just kill me to do it. I am MUCH weaker/ wimpier with Mason's stuff. I don't know why... he just seems so fragile to me. Aiden's stuff breaks my heart too.. don't get me wrong, but Mason.. something about him, he just emotionally is more sensitive. Best way I can describe it.

OK. so that is where we are at. Life is really good right now, we are so blessed. I am just gonna get through next week and then we will deal with whatever comes after that.

I am back to updating, feeling revived and ready for what is coming next. Whatever that may be.

Lisa

Monday, January 4, 2010 10:02 AM CST

And that my friends is what we call a hiatus.

But here I am updating, standing at the fork of the road having to choose between to roads. Road one is sprinkled with fairy dust and paved with bright flowers and green grass.. while road 2 is roacky, snowy, rainy, IV beeping, alarm going off, and full of detours. So which do I tell ya'll about? Do I tell you about how crappy the trip to Ohio was (excluding time with lovely friends) or do I tell ya'll about Christmas and two weeks of good health?

I would rather talk Christmas... but think it is time to get this off my chest.

This is the shortened summary.

Aiden's appointment with Dr. Grubb was one of those lackluster, 'To be continued" type of appointments. You know, where they give you a bunch of "we will do this IF... " also, "Lets eliminate THIS, then..."

(WARNING: deep sarcasm and frusteration in paragraphs ahead)

So with Aiden getting sick the next day, (missing our flight then renting a car, then driving to his other hospital) he managed to show them what he was 'made of'. You know bradycardia, and low respirations? It seems breathing only 8 times a minute while you sleep and having your heart slow to 47 was ALSO scary for the nurses and attendings at Cinci! Go figure, my local doctors WEREN'T exagerating. (she says bitterly).

I just wanted them to give me some IV fluids, but it seems that sending an unfamiliar child on the road isn't the best for liabilty concerns. So the admitted us.

I felt as if we were kidnapped by the Children's hospital, I was feeling exhausted and annoyed. We got nestled into a room on the liver floor and then I tried to sleep. UGH. All his alarms were going off. All night long.

I couldn't take any more of those darned heart monitor alarms and respiration alarms. I had, had it. How am I supposed to sleep and then subsiquently drive for 15 hours to Florida, with those God awful alarms and beeps all night?! I asked for them to lower the peramiters and set the settings lower so it wouldn't alarm so much. But the nurses (Who have never met us and don't know this is typical for Aiden- and I am not blaming them for this decision) refused saying, "He is having bradycardia! We can't lower the settings." I then decided to just hit the nurses button each time it alarmed. They came in telling me that his respirations were too low and that the attendings wanted to keep it still at that setting for monitoring. Hours went on like this, Alarms would sound litterally ever 5 mintues or sooner. Finally, I started to nudge Aiden like a snoring dog. "Hey Aiden roll over, you aren't breathing." Seriously. That is no joke. He would roll over, and heart rate would plummet again.

It was done. I was tired, cranky, and over it. SO.... sweet, and understanding Lisa was fed up. I hit the nurses button called the poor nurse into our room and said,

"OK fine.. I understand that you are all freaking out about his heart and respirations. I get it! I do! We have been freaking out for years. So.. PLEASE Page his cardiologist! Call him now! Tell him how worried you all are! I am worried too....HOWEVER since I don't have a medical degree and can't seem to google the directions on how to put a pacemaker in my own kid, then there seems to be only ONE person who can do something about it! And guess what?! They. Are. NOT. Doing. ANYTHING!!"

It was one of those 'not so proud' Hospital-mom moments. But it had to be done.

Seriously! I know.. they know.. we all know... he isn't normal. It has been going on documented since 2005. That is almost FIVE years. FIVE years we discovered he had bradycardia when he slept. FIVE YEARS ago people mumbled and mentioned pacemaker. FIVE YEARS. I don't need alarms and monitors... I am his Mommy and believe me I haven't slept well for 5 years knowing this occurs. So unless someone in the medical profession wants to do some thing more than just "talk " about it.. then TURN OFF THE MONITORS so I can sleep!

And now, you understand the hiatus from the website, I don't know how to tell that story with out yelling.. and so there it is. The ugly truth of just how stinking sick and tired I am of people being 'scared' or 'unsure' or whatever they are about my child.

So I came home. Absolutly exhausted. It was Aiden's 7 year liver-versary. It was only 3 days before Christmas. I hadn't sent cards, I hadn't bought Christmas gifts, I hadn't opened mail, I hadn't slept... So I took a break. I am still taking a break.

I can't take a break from chronic illness and worry, but I can take a break from talking about it. I can take a break from reliving just how crummy that was. And so I did. I apologize if you didn't receive a Christmas card, I hope my daily behavior shows you how much I care vs the one card I didn't send. I am sorry I haven't written all the thank you's I intend to write, it will get done. I am sorry that I didn't get to have a normal fall or a normal holiday. I am sorry that Aiden woke up sick almost every day for 2 months. I am sorry that I have IV poles in my dining room and that every morning I don't know what to expect. I am sorry that I have a bunch of really nice doctors and really smart people that just don't know how to really help my kid. I am sorry that his diagnosis is rare and misunderstood and that people don't even know if he has it. I am sorry that today, my first day 'back' from the holidays Aiden woke up vomitting and we had to pack a bag for the hospital again. I am thankful he is better and home, but sad that my afternoon will be spent at his nephrologists office. I am really sad and sorry and ticked off that Joey is now scheduling a big lump of testing and procedures on Aiden in Cinci, and that I already scheduled a big lump of testing and procedures on Mason for Jan 29th.

We are doing our best. Still smiling, still laughing, still enjoying it all we have, but sometimes... even if it is only for a break, we need to be as normal and away from medical stuff as possible.

So, with that said, I love you guys. I appreciate the prayers, believe me we need them! Bear with me if I am spotty on this website... I just need a tiny break. You know me though, I can't stay away long. Too much drama to not fill ya'll in on.

keep Believing.. we will get there! One way or another this kid is gonna be safer and healthier this year. I demand it.

Merry Christmas, Happy New Year, and have a wonderful week.

XO

Team Aiden.
gearing up for more battle.

Monday, December 21, 2009 1:01 PM CST

HOME.

I can NOT even believe the 'adventure' Aiden and I just took. I can't believe the girl who doesn't like to pump her own gas, just drove from Detroit Michigan to St. Pete Florida. Oh yeah, this is a 'girl power' moment. Of course I couldn't have done it with out my awesome road companion Super Aiden.

I PROMISE you will hear ALL about it. Probably more than you want to hear. But today's update is reserved for only one thing. Wishing my sweet boy, Happy 7 year Liver-birthday.

7 years ago today, our family and friends sat in a very cramped O.R. waiting room, holding hands, crying, praying, playing cards, telling stories, all just waiting for one thing. Aiden to be out of his surgery.

Each time that phone rang, my heart would leap in my chest. I would run beating everyone to it, but always afraid of answering it. The updates from the OR were scarce but I think it was because they knew each time they called a very young 26 year old and 28 year old Mommy and Daddy would imagine their 8 month old baby boy in a difficult surgery.

Handing Aiden off to that nurse before it all began, I remember just sobbing and holding him, afriad it would be the last time I would have the chance. I remember standing behind that yellow line, where parents are never to go past, and seeing this unfamiliar woman in silly cartoon scrubs, carry my whole life away into an opperating room.

Today he is alive and full of life. He has this incrediable sense of humor. He loves trains, R2D2, and star wars. He love baseball and going to school when he can. He is the best brother and amazing son. He is protective and loyal and has a tender spirit for sick children and babies. He always has dirt under his nails and hates to wear socks. He loves to open a wrapper and throw it on the ground, trash cans never cross his mind. He is messy and silly and loves to make others laugh. He has a love for dogs, and a special friendship with his crazy pooch Biscuit.

And all of this, I would never know, if it wasn't for the gift of Organ Donation.

To us, the bad days are never the worst and the good days are always the best. 7 years ago today I sat in that waiting room, day-dreaming of what he would be like when he was in 2nd grade. Wondering if he would even make it to see these days.

PLEASE tell someone about organ donation. Let them know that signing your drivers liscence isn't enough you have to tell your loved ones. And please remember the angel that did lose his/her life and donated this gift of our Aiden's second chance.

No mommy could be prouder.

I love you Aiden 1 million times more than infinity.

Lisa

Sunday, December 20th, 2009
UPDATE:JOEY HAWK 9:05PM
"THE EAGLE HAS LANDED"

Actually, I guess they are Hawks so the Hawks have landed. Lisa and Aiden have made it to my parents house where they will have a quick turn around heading back out early am Monday. Long car ride so I know they are tired, but I am so thankful they made it safely. What determination Lisa has, to do this all on her on. I know that I am so blessed to have her. Thank you for keeping up with us, and we will let everyone know when this trip is over.
Good night for now,
Joey

UPDATE: JOEY HAWK
TRAPPED IN A CHILDREN'S HOSPITAL.
This is what Lisa said this morning when I talked to her. With that said, I think we can see the mental status of both them, but there is good news to report. Aiden's labs look good for him, so the crew will be discharged to begin the journey home. Yes the quick trip to Ohio to see Dr. Grub, that turned into the trip that never stops, may come to an end. Despite no sleep last night, Lisa and Aiden will begin the drive south. With fresh medical supplies, and a rental car they will attempt to make it to my parents house in Georgia. I have made it very clear to Lisa that if she can not make it she is to pull over and find a room. We will see! Thanks again for all the support, and I hope to annouce arrival in Perry Ga. some time tonight.
Joey

UPDATE:11:42PM 12/19/09
By: Joey Hawk = Father to the most courageous kid and Husband to the strongest women I know.

Postal Service has nothing on Lisa. Through rain, sleet, and snow and fueled by prayer and will power, Lisa got Aiden to Cincinnati Childrens around 6:30 pm. He was seen through the ER and admitted for oberservation/ evaluation. Do not know what will happen on Sunday, but we will figure that out in the morning. He has been on IV fluids all day, so we will see what happens. I did get to talk to Aiden, and he seems stable, but tired so I hope he gets to rest. Thanks to everyone who has help up get this far I am very grateful. I know I certainly feel the prayers lifting us up. Since Lisa is without her laptop I will try to keep the website updated.
Half my family is missing, so like everyone else I feel helpless, but I know that Dr. Lisa is on call to take care of our LIL' Man.
Good Night to All,
Joey

Change of plans. Aiden woke up sick this morning going into a crisis. We had to cancel our flight home. He is stable now. We had him accessed and brought two bags of IV fluids with us. I am now trying to rent a car to drive to Cincinatti children's hospital to get labs 5 hours away, and get more IV fluids. I have no idea how or when we will get home. I am honestly just taking this hour by hour. PLease pray. I may not be able to update at all, during this, but prayers will be appreciated.

I just have to say how thankful and indebted I am to Elizabeth and the Bear Family. They have helped me with calls, holding IV lines, and just hugs while we have shed some tears. I honest to God have no idea what we are doing after Cinci.. but when we get there we will figure it out.

#1 priority is we need more IV bags and need to be safe with that.

Keep praying, Team Aiden is getting on the road, (if we can find a rental car)

Lisa

Tuesday, December 15, 2009 7:59 PM CST

We are getting ready to leave to go to see Dr. Grubb. The past 7 weeks have been enough to convince us that we needed to get into him sooner than later. So we are leaving tomorrow AM.

I am a bundle of nerves, I hate to fly.. and then to do it all alone with out Joey, with the meds, with Aiden... well I am just plain ole nervous.

We will be seeing Dr. Grubb on Friday at 3:00. Then flying out on Sat AM, for a day of flights and travel.

Please pray that the urgency Joey and I feel in our hearts to see Dr. Grubb is expressed and understood by him. I want very much to try to get to an agreement over the pacemaker issue, and figure out a better plan for Aiden while on IV fluids and taking florinef. I just hope to look into someone's eyes and hear him say, "I completely understand." That is worth so much to me. I am really exhausted with perplexed looks and people who have never heard of this diagnosis.

In anycase, I must thank so many people who have come together to help raise funds for this trip and the upcoming one to Cincinnati. Of course thank you for the Bear's for the housing, and Cat for the air miles. You guys and so many others are our angels.

I know this is not shocking to my close friends, but I still have some packing to do.. so I better be off. Say a prayer for safe travel. The climate change, and pressure changes can be a problem for Aiden. He has had a terrible headache this afternoon, and went to bed holding his head. I am praying that tomorrow he wakes up fresh and renewed.

God bless,

Faithfulling Believing we will figure this out

Lisa

Saturday, December 12, 2009 8:21 AM CST

OK yes. Even though the whole Update extravaganza was my lame idea, I still feel bad about not completing the task. But in an ironic day, the two days of crazies and no update are a good example at how unpredictable it can be 'round here.

But not to delay with fake excuses I have to tell you all the incrediable news!

Aiden stopped IV fluids on Thursday night and yesterday Aiden got his IV line taken out. And and .... He is doing great!!!

AMen amen!

I am so happy that we have had some time of just peace and normalcy. How quickly we can all just jump right back into normal life. Believe you me, We aren't sitting around and crying over the past 7 weeks. NO way. I am trying so desperatly to teach Aiden thankfulness and acceptance on such a difficult thing, Joey and I have to model that same behavior.

I was talking to my friend the other day and explaining how the road we are on has shaped our outlook a little different. The bitter sweet trials and lessons we have learned from all of the things we have seen.

Imagine having a baby. Your first child. You love him so much, you have so many gerber baby dreams for him. You are newly married and just ready to live that dream you shared for 9 months. Then a doctor tells you, Your baby will not live to see his first birthday. He has a terminal illness. He will die. The pain and devastation can't be written about or explained. But believe me, it is an unspeakable pain.

BUT.

THEN.

He says, He does have one chance at life, that is only if you are given a gift. A new liver. Organ donation.

Everything changes.

The bitterness of knowing that children die because they never got their gift, is only fuel to make each moment be honorable and worthy of that second chance.

Right now, people have Christmas lights up and people are shopping.It is the celebration of Jesus' birth, Christmas is almost here! But 7 years ago I was holding a very sick infant, just waiting for that second chance. Praying for THAT Christmas Gift to come.

And it came.

THIS is why we are ok. THIS is why when people say to me, "How do you do it?" I can say, because HE IS HERE! And others didn't get that chance.

It sickens me to know that it wasn't because of medical techonolgy that children die waiting, but instead people choose not to donate their organs. A choice... with a big consequence. And trust me, I don't say any of this with pride, like, "we are the lucky ones.." I say as a dedication to them, I will not forget and I will hug and cherish every moment.

So in honor of that day. That baby that died and lost his/her life and then gave life to my child... we will not look back over the last 7 weeks and wallow in pity. Instead, we are just praising God that today is a wonderful day.

THANK YOU for the prayers. I love Aiden so much. I love him so deeply and seeing him sick is so painful to me. I truely believe prayer, if nothing else, lifts us and strengthens us. To take time from your day, to pray or think of our family, even if you never tell us or postin a guestbook.. but that you have cared about the life of this little boy.. I just can't thank you. You are all a huge part of Team Aiden.

I better go, I have some playing to get to. It is a bueaitufl day in St. Pete Sunny and 76 degrees... I think we will go on a bike ride, IV line free.

Love-
Lisa

PS/ I see Katherine's request in my guestbook, I think it is a good idea, but I can't promise I will answer every question asked. But in light of her idea, I will post this a few times:

We will have a Q and A update. Do you have a burning question you want to ask or have answered?? Then email me the question. I will post questions all together and make it fun. DO NOT post them in the guestbook. (I do have some privacy ya know haha) But email me anything you want to know. I will gather them and then post the questions and answers as one big update.

My email Rolexh@aol.com Write "update question" or something like that in the subject line. You can be creative and you can be curious. I just can't promise I will answer everything. Or maybe I will and not post it. we will see how this goes.

Thanks Kat for the idea. xo

Wednesday, December 9, 2009 3:30 PM CST

Day three Update Extravaganza.

PERFECT example of how high-drama it has been 'round here. I got lab results last night and found out Aiden's liver enzymes doubled. OH . MY . GOSH . That is the best I can say.

So my reaction? Basically I was in hysterics. Not hysterics crying.. but laughing. I just burst out laughing. Like tummy hurting laughing. I don't know why I had that response, (although my friend Cheryl says I get laughing when I get really stressed) but that is what I did. I mean SERIOUSLY? Aiden might be rejecting too??

So I had this little cartoon in my head of a black cloud and little lightening bolts zapping me and rain drops and all of it. I guess it was so crazy, I just laughed.

Of course, that translated to almost ZERO sleep, and now a mild headache, but thankfully I can report that today's labs were the same, ALT and AST are double his normal but with further investigation his GGT was normal. Phew!

(If you aren't fluent in liver then you don't know what I just said... but basically it be good)

SO, we will redraw tomorrow, It was probably nothing, a fluke or maybe his body's way of just saying, "I have been through a lot of crud this week and I am NOT HAPPY!" I mean seriously, his little body is just working overtime balancing fluids, electrolytes, etc etc.

SO with that disaster averted, I can now continue with my regular programming.

Aiden's letter to Santa.

So, we have this 'magic' mailbox on our Christmas tree. The boys can write letters to Santa and they are 'whisked' away to the North Pole and Santa even writes back. Well things were going ok, but lately the boys have been doing a little bickering. Ok a lot of bickering. Mason has stepped up the Sassy scale, and Aiden's stepped down the patience scale.

Anyway, so Santa's last letter in reply to Aiden's many requests, said something similiar to:

"Aiden and Mason I am watching you.. I see your behavior. Please keep minding your Mommy and Daddy. Love Santa"

So A few days passed and Aiden writes a new letter to Santa.

OH let me interupt my own story, Aiden hides these letters from Joey and I. They are "between him and the big guy"...

So, I see a letter in the mailbox after the kids go to bed. I open the letter and this is what I read.

(I would post a photo but can't make it to CVS today so you will have to take my word for it)

Dear Santa,

I got your letter. PLEASE do not talk about my behavement. Please. I beg you. Lets only talk about what you are getting me for Christmas. Please.

So, I was saying I wanted the Lego City Bay.

Love,
Aiden."

I laughed so hard. First NONE of his spelling is good so it is really cute to read how he writes "plese" and "Crismus" But to see that he was actually directing Santa and letting him know to keep the conversation only about good things, was hilarious to me.

I mean, WHAT kid writes a RUDE letter to Santa? Oh it just made me laugh. It just paints the classic picture... Sick kids may be special, but they aren't perfect!

Anyway, I sure wish I could have gotten my wits about me and scanned it for you guys, but the whole rejection looming sort of rocked our world.

So, today being hump day, my update extravaganza day 3, I will keep it short and end it there. I can't thank you all enough for your prayers, and thoughts. And I appreciate you all sharing the long lists of "wows" in my guestbook. It cracks me up, because WOW was exactly what I was thinking too.

(and if you haven't read Day 1 and 2 of Update Extravaganza, you are missing out. You too can be speechless like all the other people in my guestbook- so check out my journal history. And if it doesn't load for you, you can hit the stop button and it will pop up.)

Anyway, God bless.. Go hug your kids, or your loved ones.

XO
Lisa

Tuesday, December 8, 2009 11:33 AM CST

Day two of the 'update extravaganza'

Better read quick cause you'll miss it! (or just look in journal history)

I figure the daily update is actually a good dipiction of our reality. Nothing ever lingers for a week. Not one feeling not one event, life is ever changing.

So in theme of that day 2 in the life of the Hawk family.
There has been a diverse group of people who have been so gracious to our family, in light of the unplanned trip to Dr. Grubb. I just want to thank everyone who has offered to help, or raised funds for us, and even donated their air miles. THANK YOU!

I can't tell you what it feels like to know you have to take your child to a specialist but then to have to hold into consideration HOW we will do that. I know God has always provided and we have been so blessed to be able to have a home, and a car, and the things we have. But it is hard. As you all know, Joey is the hardest worker ever, and NEVER complains. Sometimes I wish he would complain, he makes me feel like such a slacker.

So thank you for taking that burden off of us. I am so indebted and humbled and just thankful.

So as for the last update I got a lot of mixed reaction. Some people were pretty shocked and a little freaked out, and others were excited and happy for us. I think that pretty much sums up how Joey and I feel. But I wanted to add a little something to the last update to really explain WHY this is good....

The thing is this. Mason has already shown us that cognitivley (intellectually) he is on target. He is bright and funny and incrediably creative. Because he is 4 years old we also know this is very unlikely a progressive issue. (That means it won't likely worsen over time) And finally this will not provide us with any information we already didn't know except possibly TWO things

1) a diagnosis
2) a treament.

The diagnosis is just the name to take place of not knowing. He is still Mason with a diagnosis, or with out. It is just a word. Really that may sound crazy, but I have lived this diagnosis road many times before with Aiden. And I have really learned over time that NO MATTER WHAT it is just a name. Mason is Mason. Aiden is Aiden.

Lastly a treatment. What would it feel like to know that there is some amino acid or some suppliment he could have that would help his muscles be a little stronger and his body absorb fats better? It would be amazing! Mason is on 1100 calories a day of pediasure (full diet), then he eats food on top of it. He isn't gaining weight, and it has been 1.5 years since the GI said to do this. SOMETHING isn't letting him absorb the fat... and if we can discover what it is, then halleluia!

SO, please know Joey and I so appreciate your concern, you care and even the shock. Heck, I feel shocked all the time when I just stop from the whirlwind of it all and look at it from a distance. THIS is crazy! But it is ok. We are soooooooooo blessed!! We have so much. It is ok.

And speaking of being blessed Aiden is feeling very good. Amen!

He is getting IV fluids with potassium for only 12 hours a day. We plug him up at night, and when he wakes up in the morning his home nurse comes out and draws his blood, and unhooks him. The first day he was getting fluids only nightly I could tell it was not enough. He was actually begging for more because his headache was so bad and he was dizzy and tired, but I stuck to the plan. It has been a few days and now his energy is back up, and his spirits are too. I think the 'plan,' if there is a thing, is to keep the 12 hour fluids going for 2 more nights, then stop them and see if it starts over. (like last time). I am sort of panicked to stop the fluids because I keep thinking his body is dependant on IV fluids. I don't think there is such a thing, I totally made that up, but I am none the less afraid of it.

So to make this update a tad more interesting I made a little slide show of Aiden at the very exciting ribbon cutting ceremony for the NEW All Children's Hospital. TECHINCALLY speaking, the actually ceremony was hot and boring, but cutting the ribbon was super fun for him.

Tomorrow's update will include a HILARIOUS letter Aiden wrote to Santa. Stay tuned!

Love,
Lisa

Monday, December 7, 2009 5:04 PM CST

The week of the updates.

Each day this week I am planning on doing a new update. Obviously sharing important information about the wellness of our oldest son, but there will also be photos, and other bits included (maybe even some picking fun of Joey old school style).

And with a little twist, you think you come here to read about Aiden... well you did... but todays update is more of an update about our favorite little 4 year old named Mason.

Ok, I am pretty sure I don't get many 'new' readers, infact you guys are amazing.. tried and true. But if you ARE new to the caringbridge page you are probably wondering what I am talking about with Mason. Bear with me, and just follow along. It is all pretty hard to believe that yes indeed out of this small family there are two children born with two seperate rare conditions. Mason's is just well, not nearly as 'big of a deal'. But earning him in any other family the right to his own Caringbridge page. But in ours he just piggy backs on big brothers.

SO TODAY. It was pretty eventful. Aiden. Ummm I mean Mason, had his big 'second opinion' appointment with a new nuerologist.

Ok WHY a second opinion? Well the deal is this... Mason's doctors are all Aiden's doctors. And unfortunatly when I bring in Mason, we always veer conversation to Aiden. So with a long history of Mason's doctors patting me on the knee and basically ordering me a straight jacket for all "i have been through", I decided to take matters into my own hands. Get a doctor that has NEVER met Aiden, and make him MASON's doctor.

AND man I am sooo glad we did.

Mason has a long history starting with a major growth delay and then developmental delay. A few years ago they discovered a cyst in his brain on a CT scan, which for 5 long days we thought was a tumor. Then with more investigations they discovered the white matter of his brain (Myelin) was 'changed'. That means there was little black spots on it when we saw it. He wasn't talking, and wasn't understanding us. At 15 months his right hand showed to completely uninvolve itself as well as his right leg. The nuerologist called him "Hypotonic Cerebal Palsey" Basically he was low/ weak toned because his brain was telling his muscles to not work right. He wasn't walking and he wasn't growing much. THEN he stopped eating. Fast forward almost 3 full years of therapy Physical, Occupation and Speech he has done tremendous! He walks, runs, talks, tells stories, and is just wonderful. BUT he isn't 100His growth is a big concern. He still has developmental delays (walking up and down stairs, balance issues, and strength of his abdomen, neck, back and right side.)

To the average bear you don't see his struggles, and people usually say, "Oh well my son is small..." or "He looks fine to me!" Yes. That is all true, and infact I am bored. I just want to have MORE on my plate. Infact we are making it all up! That is really what it is. Ok, obviously I am being defensive, but it is all because people don't know how hard this little guy has worked to 'look so good.' Years of struggles and therapy! He didn't walk till 23 1/2 months old. And that was only after 6 months of 6 hours a week of therapy.

OK.. I got sidetracked sorry. But yes, he looks good, especially IF he just turned 3. But he didn't. He is 4.

So, we went today. Fresh doctor, refferred to me by Mason's Occupational Therapist. This doctor has been a nuerologist for over 40 years. And he was good. We started from scratch. Actually from when I used to call him "the bun in the oven." (do you guys remember that?) I had a complication in my pregnancy called polyhydramnios. It means super high amniotic fluid levels. I had to be ultrasounded ever week for 20 weeks. It is common with birth defects and indicates 'something isn't right.'. We talked about his delay, how it all went down and he had all of his MRI's, genetics reports, nuero-surgery consults, labs, etc... He already knew what he was going to tell me.

He did a big exam on Mason looking at his whole body and noting the little differences he had. Some of them scared me and some of them I giggled about. Like he has this white line down his chest, and his ribs flare out. He has hyperflexible joints, that bend like rubber bands. And he has a high palate in the roof of his mouth. But the one that turned my stomach was one that he said, he didn't see 'noted' in Mason's medical records. It is on the palm of his hand. A single line across his hand. I guess this is significant as well. It seems that only 0.8 f the population have this but 80f down syndrome and other disorders do. And Mason has it. I never saw it before, and it just made me sick in my stomach, and a little worried.

He did some tests on his right side, and then his left. All confirmed what everyone else said. But then he suprised me... he said, "the genetics doctors recommended some more chromosonal studies and they never were ordered." He said, bluntly but with the best bedside manner, there is something wrong with him. I need to find out if it is 1) his brain 2) the nerves to the muscles 3) his muscles or if this was a metabolic disorder. I asked him what he thought.. what his 'gut' was thinking. And he said, 'A good doctor doesn't step out of their area of expertise, but instead they recognize the problem and then let another professional help.' So we will also see endocrine and follow up with genetic testing. But after he said all that, He said, he thinks it might be a metabolic disease.

OK.

he said, SOMETHING happened at 15-18 months and his growth hit a wall, as well as his developement. He wants to do an MRI not only on his brain, but his entire spine. He found a concerning 'dimple' on his tailbone area. And there has been a 'lump' on his spine that I have mentioned a million times, that he also felt and wanted to MRI.

Ironically, he wasn't too concerned about the cysts in his brain. But he said, "You have two very complicated and rare disorders in two different children. We need to be looking for Zebras not horses. And I think these Zebras have checks and and spots and not stripes."

SOOOO how is THAT for an update?

Mason isn't going to be ignored anymore. And if he does have a metabolic disorder then there very well may be an actual supliment or amino acid he can take to help him grown and develop!!

You see, kids just grow. They just develop. They walk, the run, the climb stairs. Mason has had to work for every bit of it. I am his mom. I want to help him. I want to help him so he doesn't have to work so hard.

So that is the scoop. A bunch of labs, chromosonal tests, metabolic tests, and an MRI of his brain, and 3 parts of his spine. The whole wham-a-roo.

When you ask? I dunno. I haven't gotten that far, and frankly don't have the courage to schedule it just yet. I will deal with that tomorrow.

So here is a little video of Mason very recently achieving a huge goal for himself. He was in this little dish, working on hold his head up and lifting it from a 'supine' (laying) position. The put him in a 3/4 flat position to help him cheat a little but when you hear his therapist say, "ok for real now reach" you can see his head fall back, his mouth open and him trying with all his might to just lift his head. He did it, got the toy, and moved to the next excercise. At 4 years old.. this little guy has worked harder than I ever would in the gym.

SO that is Monday's Update. Tuesday will be completely different. Updating you on Aiden, our visit to Ohio and maybe a little photo slideshow.

Thanks for reading, for praying for us. And thank you to the friends who were open enough and caring enough to encourage this second opinion for little Mason. Love to you.

Lisa

ps/ this new nuerologist also had a few things to say about Aiden, after the appt was over. It seems he has 3 kids with dysautonomia in his care. I will share details in another update. But it was a "God thing" as we like to say.

Saturday, December 5, 2009 1:03 PM CST

OK. so we are continue to do IV fluids from home. Spent a few hours in the ER last night trying to re-access Aiden's port. It was as usual, a terrible time for him. Aiden's nurse is coming to our house daily for lab draws and thankfully so. I really detest the insides of that hospital and this is nice to get a break.

So we have now switched to day 2 of Nightly fluids vs the 24 hour fluids. This is a nice little break, but usually this is when Aiden's brain tells his vessles to be confused.

I guess it is best to describe like this.

DURING an episode Aiden's veins are like a straw with holes in it. Leaking out the water but holding in the cells. So we give him IV fluids to help keep the water in, even if it is done artificially via IV.

Whenever his dysautonomia starts to calm and his vessles begin to retain the fluid on it's own then the medication he takes can sometimes cause him to retain TOO much fluid. It seeps into his tissue and he bloats. And his vessles pump up with it too. This is a new complication that we have only experienced 2 times. Once last month with the potassium drama and now again today.

So. Because this is new and we don't know exactly what the level of his hormone is in his body that retains fluids (vasopressin) we will just hold the florinef (a special steriod he takes to make him also retain fluid). And then redraw labs in the morning.

I am making homemade veggie soup, and a dear friend gave us an incrediable juicer, so I am also juicing high pottasium and calcium juice. We can try from home to help supliment him but if this doesn't stay either stable or go up, Aiden will have to go in and get IV pottasium and calcium again in the hospital.

So that is the latest.

As we can see we are having some extra problems that we haven't experienced before. I am praying that we can figure out clues as to why when we see Dr. Grubb. Thanks be to GOD we got an appointment in Toledo on the 18th of Decemeber. This was such a blessing because he is so hard to get into see.

Keep praying that we can get over this crazy hump in the road, and get back to that AMAZING healthy time we have had all year long.

Please say an extra prayer for little Aiden. 7 1/2 is a tough age to have so many changes. He has lots of questions and we have so little answers. He has found comfort in Haley's music, the song Everywhere seems as if it was almost written for this time for him. A little girl who understood life in a hospital, singing about God being there for us. Thank you Haley for that gift of your music.

So thank you for the prayers. Thank you for the people who have been wanting to purchase a cookbook or stationary. I can't thank you enough!!! God bless you!

Lisa

Tuesday, December 1, 2009 12:49 AM CST

Okie dokie.

So. Sunday Aiden was feeling good. Yesterday he was GREAT! The IV fluids finally did the trick and his vessles stopped leaking the fluid. Aiden's hemoglobin and Hematocrit dropped back to 13.6 and 40. This is a sign that he isn't so hemoconcentrated and loosing all the fluids we are pumping into him.

SO because of that we hep-locked him (which means we stopped the fluids) and he had a great day. Felt great.

This morning to my SHOCK Aiden went into another episode. Vommitting, collapsing, etc. This has never happened. back to back to back like this. I am just really suprised. Although this is the month he has problems, and Joey's birthday is in 2 days and we are always seeing hospitals on that day.

SO. Thank GOD I had all the IV fluids here. I remembered my moments as a vet tech at the animal hospital grabbed a fresh bag of fluids from the fridge, filled a bowl with hot water and threw the bag in. As I sat there waiting for the bag to warm up so I can set his pump up and run it, Aiden was getting worse. After only 10 minutes, I got that bag warmed up enough and began running it.

Like a freight train this weird illness was coming on and with the fluids it just skidded to a halt.

He was able to stop wretching, his blood pressure came back down and he fell asleep.

And I was sort of feeling like Mom of the year. LOL

So his home nurse came, drew labs, and then drew some of these weird send outs fromm his cincinnati hematologist. Checking for histimine levels in his blood. (ruling out some whack-a doodle bonemarrow disorder).

I then went to the pediatrician,because Aiden has now been adding tummy pain to the list of the complaints, and we chatted there.

I am in a deseperate attempt to fly to Toledo Ohio and see his dysuatonomia doctor. He needs to know and help us stop this month of episodes, flares, crisis, whatever you want to call it. We just can't get it to stop. So we will see when we can go, but if it is christmas morning I don't care he needs to be seen.

I am thrilled to pieces that the little guy avoided the hospital and is home on another week of IV fluids. THIS we can handle. Hospitals have a tendancy to put me over the mental wellness edge. So... home we are. He is chilling watching movies, and feeling mediocre.

I will keep ya'll posted on our attempt to get to into his doctor in Toledo.

And please because it is Christmas and we just don't have the budget for more hospital travel, if you want to buy a cookbook or two please let me know. I have about 15 left...

Email me at Rolexh@aol.com

They are $15.00 each with a 2.00 shipping fee. (really making them 12 each since shipping is 4.50)

I also make stationary sets of 8 for $12.00. They are monogrammed and beautiful.

And if you are local. I think we might be having another... gulp... yard sale. (all my friends just fainted and filled their calendar quickly LOL) Don't worry not like before just a smaller one Joey and I can handle it but maybe we will take some donations of items to sell. ? ? I am just winging it and saying this off my cuff. Email me if you have any thoughts.

OK. So that is the deal.

Praising God for my son, and for being home.. and NOT giving up on finding a better answer than this.

XO
Lisa
Team Mom.

Sunday, November 29, 2009 11:54 AM CST

Oh I love the Christmas season! YAY! We got our tree last night. It was funny because it was the first one we saw, and we knew it was 'the one.' That never happens. Normally we search and search and it is some big adventure. But we got it and then we just stared at each other. Ok. That was quick. Now what?

Today we have been taking down fall decorations and putting up Christmas stuff. It has been sooooooo nice to be home.

Aiden has been feeling MUCH better with his fluids. I think we are getting into a nice little routine, which helps him so much. He gets his fluids for 12 hours and then I unhook him for 1 1/2 and he runs and plays. Then re-hook. He is feeling so good that I am thinking tomorrow we might be able to unhook again, see if he is over the 'hump.'

I am so thankful that we have really gotten the homehealth stuff sorted out and are avoiding hospital stays because besides the little Bag of water, life is pretty normal. I guess even though this is such a strange weird disorder, I am thankful that water is one of the treatments, so much better than toxic chemicles and more medicines. It is just water.

Last night we ran out to pick out our tree. I ran into a child life specialist from All Kids, she mainly works in Bone marrow transplant and dialysis. I was again reminded that even though this isn't exactly the best thing, we are so lucky to have it be 'just this.' I thought of those kids sitting in the hospital for months on end, my heart just felt so much compassion for them.

I wanted to update and let you all know that things are moving forward, and it is so much easier to be resiliant from the comfort of your home.

I wanted to take one special moment to send love to my friend Cheryl, and all the other mommies and daddies of children who have flown to Heaven. Even though, we have all of these moments that just seem so crummy and difficult, I still have my child. No matter what, I am thankful and not going to take that for granted. No parent should ever lose a child. No parent should ever know the feeling of loss and grief that these parents have felt.

Please in honor of Haley and the other sweet Angels, please hugs your kids, sign up to be an organ donor, blood donor, tisue donor. Please take a moment to tell the ones around you, that you love them. That you care about them.

Getting into the Christmas spirit,

Love,
Lisa

Update coming tomorrow.

Thursday, November 26, 2009 7:33 PM CST

Friday-

Seriously. Today is "one of those days." And I don't mean regular people. I mean MY "one of those days".

If I start to put it all into words, I might be committed. So, instead I will just say that Aiden is on day three of feeling crummy (although a tad better from yesterday). But none the less he went to the ER for IV fluids, labs etc. He is now NOT being admitted to the hospital (whoot whoot) but instead he is getting homehealth and home IVs. I know tonight when it all sits in I will be annoyed with this, but as of now I am just really stinking happy to not be sleeping in a hospital.

Aiden is happy too. And that is all that matters. He gets to cuddle his Biscuit puppy, play his legos, and rest in his own bed.

Life has been difficult for Aiden at times. It has been full of crummy moments. So I am not gonna waste this moment home with him griping. Instead, we have gotten into the Christmas spirit, unwrapped Rolex's (the dog) Christmas Present and put him in it.

No matter how crummy a day we have had we can't help but laugh at Rolie in his new

SNUGGIE.

The above photo is not Rolex... but yet another shameless pet enjoying the warm cuddles of his blue snuggie.

ANyway..so that is the update for today. IV fluids, sick kid, Home health, IV pole sent back after finally getting rid of it... AND an early Christmas for Rolex. Just to make us laugh

Keep believing

Lisa

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

Dysautonomia.

I just hate it.

I have some interesting, you tube videos on Dysautonomia...

One of them is from Mystery diagnosis from the Discovery Health Channel.

I remember BAWLING and crying and hanging onto every single word when I first saw it. someone who understood.

Part 1 Mystery Diagnosis about dysautonomia

Part two of Mystery Diagnosis about dysautonomia

PLease if nothing else watch the above clips. It isn't exactly Aiden's type, but it would mean a lot to me if you would watch it.

If you don't want to watch the other clip because of it's length you can at least see this little clip of a preview to an informative movie they have made for dysautonomia preview to the informative movie on POTS/dysautonomia

There are more... but let me just say, it is so frusterating. My vibrant, strong, loud, energetic child that had rosy pink cheeks a few days ago is now pale, week and on the couch flat for 2 days.

This is so hard sometimes, and normally my posts are pretty cheery... but I really wanted to just share more about this disease and show the face we love and how it effects it.

pale from the vasoconstriction.

Sick in his tummy from the blood pressure and heart rate swings.

SOOO thirsty from the loss of fluids from his vessles.

But still the most amazing Brave boy in the world.

Go Team Aiden.

Praying no admission, and no hospital.

Tuesday, November 24, 2009 8:18 PM CST

Well if you aren't on facebook (you should be) then you probably don't know that Aiden sadly went into Anaphylactic shock this weekend. With out getting into details because it is so painful to relive, I am just praising God that our child made it through.

After all these years of safe guarding, being vigiliant, being so careful, and keeping him safe from this type of terrible reaction in a moment, it was all taken from us. A mislabled food item almost took his life.

So this Thanksgiving, I am thankful for the basics.

I am thankful for one more day. Thankful for every moment. Even the moments where I see them messing up their rooms. Being too loud, making more dirty clothes than a whole football team. I am thankful for all of it.

Thanksgiving deep thoughts:

Thanksgiving is such a weird holiday. I mean as usual we have warped the original version to make it more fit our needs. I mean since both Joey and My family have strong Native Indian backgrounds, it really was a pretty sad time for Native Indians. I am sure they weren't really that thrilled to see pale face mess things up for them. And I bet those Homely Pigrims (sorry Cheryl) weren't really all that thankful for the starvation, freezing weather, and death apon arrival of seeking their religious freedoms. But they made the best of it. As the story tells, they worked past their differences, felt compassion, and joined in partnership and shared a nice hot meal. (I think they actually ate fish from the sea and not turkey, if I have read right).

Hundreds of years later, It is a cute story that translates in a weak way. Mason goes to preschool, comes home in some paper hat with paper feathers and little Indian stickers on it and he is introduced to "Thanksgiving." Yep this holiday is weird for me. I guess because there is no real religious ties to it like the Birth of Christ or Rising of Christ. But ACTUALLY, (as my boys like to say) it does have STRONG religious and Christian ties behind it.

Yes. I am going to give you fun fact on how this Holiday started out about NOT being thankful to EACHOTHER.. but actually to God. For your reading pleasure:

"Many Americans think of Thanksgiving as a wonderful time to celebrate getting out of school for a long weekend, and eating a great dinner. Or, maybe they think it is the start of the Christmas holiday season. What is the real meaning behind Thanksgiving? Catherine Millard writes:

We can trace this historic American Christian tradition to the year 1623. After the harvest crops were gathered in November 1623, Governor William Bradford of the 1620 Pilgrim Colony, �Plymouth Plantation� in Plymouth, Massachusetts proclaimed:

"All ye Pilgrims with your wives and little ones, do gather at the Meeting House, on the hill� there to listen to the pastor, and render Thanksgiving to the Almighty God for all His blessings."

This is the origin of our annual Thanksgiving Day celebration. Congress of the United States has proclaimed National Days of Thanksgiving to Almighty God many times throughout the following years. On November 1, 1777, by order of Congress, the first National Thanksgiving Proclamation was proclaimed, and signed by Henry Laurens, President of Continental Congress. The third Thursday of December, 1777 was thus officially set aside:
"�for solemn thanksgiving and praise. That with one heart and one voice the good people may express the grateful feelings of their hearts, and consecrate themselves to the service of their Divine Benefactor;� and their humble and earnest supplication that it may please God, through the merits of Jesus Christ, mercifully to forgive and blot them (their manifold sins) out of remembrance� That it may please Him� to take schools and seminaries of education, so necessary for cultivating the principles of true liberty, virtue and piety under His nurturing hand, and to prosper the means of religion for the promotion and enlargement of that kingdom which consisteth of 'righteousness, peace and joy in the Holy Ghost'�"

Then again, on January 1, 1795, our first United States President, George Washington, wrote his famed National Thanksgiving Proclamation, in which he says that it is�

"�our duty as a people, with devout reverence and affectionate gratitude, to acknowledge our many and great obligations to Almighty God, and to implore Him to continue is� our duty as a people, with devout reverence and affectionate gratitude, to acknowledge our many and great obligations to Almighty God, and to implore Him to continue and confirm the blessings we experienced�"
Thursday, the 19th day of February, 1795 was thus set aside by George Washington as a National Day of Thanksgiving.

Many years later, on October 3, 1863, Abraham Lincoln proclaimed, by Act of Congress, an annual National Day of Thanksgiving "on the last Thursday of November, as a day of Thanksgiving and Praise to our beneficent Father who dwelleth in the heavens." In this Thanksgiving proclamation, our 16th President says that it is�

"�announced in the Holy Scriptures and proven by all history, that those nations are blessed whose God is the Lord� But we have forgotten God. We have forgotten the gracious hand which preserved us in peace and multiplied and enriched and strengthened us, and we have vainly imagined, by the deceitfulness of our hearts, that all these blessings were produced by some superior wisdom and virtue of our own� It has seemed to me fit and proper that God should be solemnly, reverently and gratefully acknowledged, as with one heart and one voice, by the whole American people�"

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

WHOA!

OK. So I was wrong. It WAS a Christian holiday, and then umm we turned it into something else. I mean wow. Who would have thunk it? Doesn't ring ANY bells (jingle) to me. I mean Santa and the Easter Bunny are nodding their head in agreement, right?

Yep that's right. I will admit the only thing about Thanksgiving I really looked forward to is, that wonderful shopping extravaganza that happens on Friday AM. In the weeee dark hours of the AM. But... after our very terrible Saturday night I am committing to turning this into our Thanksgiving to God.

So Thank you God. Thank you for this year. Thank you so much for my family. Thank you Lord, for our friends. Thank you God for each day you have granted us, so we can shine your light.

I hope and pray you have a meaningful Thanks Giving. I hope and pray you feel as passionatly for the simple things, as Joey and I do this holiday. Hug those around you, and never take it for granted.

Happy Thanks-(to God for the)-Giving!!!

Love-
The Hawk Family.

Thursday, November 12, 2009 10:47 AM CST

So this week we have tried something different. We have been actually doing home IV fluids with potassium each night since for a few days.

Yes, that means we have an IV pole again.

Funny how that happened. Well not funny. But ironic.

So.

Now we are trying to speak to Dr. Grubb and see what he thinks about all of this. I am trying to figure out this heart monitor and see how to call in the information on the episode. That is my mission for today.

Maybe that heart monitor found something. But either way, it is what it is.

I have been wrestling for so long with trying to blame this dysautonomia on things. Maybe it is the meds. maybe it is a heart thing. maybe it is something he had seperate and he just has two rare diagnosises. I don't still know the answer, but I am now trying to move from the phase of 'figuring out why' into accepting 'it just is.'

I really don't want people to feel pity or sadness for me, this is just a process of grief or acceptance. I just want people to bare with me as I move through different confused feelings.

There is NO rules on how to do this. No rules to it. Some days we are the happiest family, some days can be real despair... living on such a roller coaster of life is exhausting but sometimes exhilarating.

This few weeks is an exhausting phase. It will pass again, the ride will keep moving, and Joey and I will keep working to figure out how to deal with each twist and turn AS THEY COME.

I have been secretly trying to fight the dysautonomia DIAGNOSIS because 1) it is rare and misunderstood (by even me) 2) it is a crappy diagonosis 3) because I am a MOM and we are the last to ever want to accept the big words and names like dysautonomia.

I think this visit was the one where I have come to terms.

That isn't like I have 'given up' or anything. It just is the time that I feel like I now KNOW, we might be dealing with this at some level for life or at least a while.

Maybe it will go into a place where it is in a 'remission' like this last year. Maybe it will only hit a crisis every once in a while. OR maybe it will be like 2 years ago and frequent. I am tired of trying to read futures and guess anymore. I am trying to now just take day by day again.

I haven't lost ANY faith in God, infact my faith is the same if not more. Accepting things may NOT change is really giving full power away from myself, and to Him. This is HIS child. And maybe if you read my site and you aren't a Christian, that sounds weird or crazy. But it is my faith and my belief. To me GOD is my ultimate Father, the great Healer. He gives and takes away. Alpha Omega, beginning and end... but also all of the in between too.

I am going to post some links to some information about dysautonomia. I have committed myself to trying to understand it better, because I think with that I won't feel like we are just guessing anymore. If you want to learn along side, I am all for it, maybe having a tribe of people understanding will help us during these times where we have bumps in the road.

CLICK HERE for DYNA Kids

SYMPTOMS of Dysautonomia:

Symptoms of dysautonomia may include: Tachycardia* (extremely fast heart rate), bradycardia* (slow heart rate), palpitations*, chest pain*, dangerously low blood pressure*, wide swings/sudden drops in blood pressure*, orthostatic intolerance* (the inability to remain upright), excessive fatigue*, exercise intolerance*, dizziness*, fainting/near fainting*, gastrointestinal problems*, nausea*, insomnia, shortness of breath*, tremulousness, frequent urination*, convulsions, cognitive impairment, visual blurring or tunneling, and migraines*.

*the symptoms he has had/ or frequently has in an event

The most common ways to treat Dysautonomia is the following:

Treatment is based on the condition, the sub-type, and the patient specifics and must be individualized.

Treatment: often includes pharmacological and non-pharmacological methods. Fluid intake of 2 liters a day along with an increased sodium intake is often recommended to help increase the patient�s blood volume. Various medications are commonly utilized and each is fine tuned to the particular patient. Medications will also typically require ongoing adaptations as the patient physiologically develops and changes. The hope is to be able to obtain enough symptom relief to initiate a gentle reconditioning program. Reconditioning is important and must be done slowly and can be an extremely frustrating and arduous process.

Betablockers, florinef, blood pressure medications, IV fluids, DDAVP, Salt, Oral hydration with Gator-aide, and other treatments are most common.

(Aiden has been on all of the above excluding the betablockers because his heart rate drops too low)

Whether it is caused by prograf, tamiflu, heart problems, weather changes.. whatever. It is Dysautonomia. And now we are going to focus on treatments that are the best we can offer.

I am hoping like our pediatrician said, "Hopefully this only happens once a year and it is just better". Lets keep praying that life resumes like it was this past summer. He has been sweating, and energetic, and healthy. I have faith we will get there again! And you know what? If this comes back and has another episode we can deal with it THEN.

As of now, it looks like my buddy feels better. I am hoping that we can take him off this IV fluids, although doing it at home has been a GOD-SEND! So keep praying!! It seems as of today we are getting over the hump.

I will update with the new "plan" as soon as I know.

XO

Lisa

Tuesday, November 10, 2009 6:13 AM CST

I just had to share a story.

So Last night was one of Aiden's last baseball games. Since he has an IV in his chest we knew he wouldn't play.

Earlier yesterday morning, I asked him, "Do you want to go to the game and help be the asst. manager?" He was pretty quiet but squeaked out a confident "No."

Since he wasn't feeling good I left it all at that. But a few moments later Aiden shared his reasoning.

"I don't want my friends to think I have a rare disease and that I am never going to get better."

Wow. Heartwrenching. I scrambled for words to say, but as usual I just did my usual.

"NO! Aiden you are better! You are going to get better!"

He looked at me sad and said, "Well even if I am, they will see me with my port and still think I am not. No one will want to be my friend anymore."

I tried to reassure him but I knew that this was something his daddy needed to help with. Sometimes Daddy's can be a boy's best medicine.

Our day was pretty much a whirlwind. From labs to picking up Mason to getting the cat from the Vet. In the afternoon, Aiden went to his room and finally got his 'space'. Poor kid just wanted to be alone all week and was stuck with me for better or worse.

When Daddy came home, I tried to warn him that Aiden was very sad and was afraid to show his feelings, But Joey just swooped into his room and didn't know. Joey asked him also, "Do you want to be the bench manager? You can help with the line up!"

Aiden became very upset and fursiously told us NO WAY. NO NO NO. I gave Aiden a hug and just told him, he had every right to want to be alone and if he was scared it was ok too. But tried again to re-assure him if he went no one would think anything bad about him.

Joey looked at me and asked me how to handle this one. It seems none of the parenting books have chapters on how to tell your chronically ill child that even if it feels they will never get better, that they will. Or to give them strength and power in thier difference. Honestly, we both were at a loss.

But in like so many times with my boys, we drew from John Eldridges's "Wild At Heart", and just made an attempt. Instead of trying to explain it.. we have learned that there are times when Daddy just has to model and show his boy how it is ok to be emotional. Strong men (and little men) have feelings. They feel sad, and hurt, but it doesn't mean they aren't strong. SO Daddy, Leaned down and hugged Aiden telling him, "I know you are sad. I know you don't feel like coming. It is all ok. I am sad too. You can do what you are comfortable with. I love you." No pressure.

I know it is Joey's nature to actually pep talk him and just blow over these painful moments because.. they are painful. But Joey is a wonderful Daddy, and did what he knew was right.

Aiden was so relieved, hugged his daddy and went back to him rooom. Joey and I just felt like our hearts had been ripped out of our chests.

Even though 7 1/2 isn't that old, we know that little Aiden is getting older. He needs some space. Some of this has to be his choice and workings of his own. I guess this was one of those times, because having Joey hold him and tell him that his feelings of fear were valid, seemed to actually give Aiden even more courage.

Moments later, dressed for the game, Aiden rushed out and said, "I changed my mind!"

Joey and I just rolled with it and off they went. I stayed home with Mason and just prayed that Aiden would be protected and blessed for again trusting in God.

When a few hours passed and the game was over, the front door slung open and Joey and Aiden were cheering and laughing and just glowing! Aiden ran to me as fast as he could and hugged me, "I love you Mommy!!! I love you!!"

Joey begins to tell the story.

I guess Aiden went to the game and went to the dugout as usual. ALl the children on his team are so sweet. I mean just awesome kids. (as kids usually are!) But none of them knew Aiden still had the needle in his chest, so the usual wrestling and chasing began. I guess Aiden became scared and Joey sat the team down to explain why Aiden couldn't play today.

With all the kids on the bench, Joey told them about the port, about the hospital visit and that it would be painful to play ball with the needle in his chest.

Aiden hid behind Joey as he told the kids.

Then... God's grace was thrown Aiden's way. One by one the kids began to chant "Show us! Show us! Show us!" Soon the whole team was yelling to Aiden, "SHOW US!!"

Aiden loved it! He knew all his fears were unfounded, and he stepped out in front of all his buddies. He did the little Aiden tease. Showing only some tape. Then nothing. Then more .. then BAM! The whole thing! Port, tape, scars, all of it.

The kids cheered and screamed! They kept telling him, "YOU ARE AWESOME!!! You are sooo brave!!!!!"

And at that moment, My little boy wasn't afraid anymore that the other kids would think he was just some kid with a rare disease that would never get better. Instead he was (and I quote from Aiden)

THE BRAVEST BOY IN ALL OF ST. PETE.

When Aiden told me this story he couldn't contain his happiness, he would just hug me and laugh so loud. Over and over, "They think I am full of COURAGE!!! I must be the bravest boy ever!!!"

Sigh.

I can't really tell you what this all feels like.

It is an honor. A complete honor, to be this child's mom. There is not a hundred nights in a hospital, days worried and scared, that could ever take away from the joy of raising this child. I have seen some of life's most beautiful moments just by sitting back and watching this path Aiden has been set on.

To see your child, at such a young age, teach you about so much... it is just an honor.

My dear little Aiden, None of this has been fair. I know you know that none of your friends even have a clue as to how much you have suffered. Their minds are too innocent, they have never seen the world you have. But, yet again, you step forward and show them more courage. Your spirit has amazed me. You have made your mommy and daddy so proud.

Just like Aiden, I am not afraid to show my scars, needles and pain. But in it all I hope it is the courage of the Lord that shines the brightest.

Thank you for always praying for Aiden. Each day we have with him has been an honor and blessing. I hope you can feel some of it too, even through a computer screen.

courage in such a small package.

brave little Spongebob lover

No tears from this little Lion.

see!

Loving his Thomas in the hospital

Just 3 years old... courage of a man.

Always knew he had a few friends that would be there no matter how many pumps or lines were running.

Hannah prays everyday for her friend.

each one a different admission.

"Stand still like a statue" Brave little boy.

Pale is the new pink. Beautiful no matter what.

brave in the face of change.

I love you Aiden.

My eyes have seen so much. This is just a speck into the moments I have seen you endure. The marathon that it has been.. yet you are suprising me and teaching me every step of the way.

God has blessed me with this child.

Hoping for Courage like my little one,

Lisa

Sunday, November 8, 2009 7:53 AM CST

WE ARE HOME!!!!! they kept his port accessed, pluged him up, and we are home!

We are coming back in the morning for more testing, but home is soooo good.

Please pray for Mary, as she is not home and is in the hospital and will be on her 15th birthday. :(

The best part of being home?

JOEY and MASON are home too.

go Team Aiden! We have conquered another bump and hoping that was the last one ever.

Love- Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sun Am update

OK so yesterday was a terifying day.

Potassium can be a BIG deal. This isn't your run of the mill Potassium supliment, this is the IV potassium Chloride diluted. You know the same they use in the lethal injection undiluted? I haven't seen nurses this nervous, in a long time. After it was all done, and Aiden's heart didn't suddenly stop, the nurses all shared just how scary it all was. I pretended to already know so I could hear and understand the details of what we just did.

Lets just say I am praising God for his protection on my child.

I will never take for granted a word like potassium again.

For 6 days Aiden was limp and weak and tired. He was getting IV potassium in his normal fluids, but it wasn't enough. They had to bring in the big guns. After we got through the infusion about 1 hour later, I saw Aiden get up and get a drink of water.

It was like magic. He was up and moving and himself.

So I just met with a nephrologist we have never seen. He was just completely baffled and shocked at how low Aiden's potassium got (in the 2's) and explained the reasons why you can have low potassium.

1) excessive vommitting diahrea. - nope. none of that.

2)You can urinate it out in excess.- They did a special Urine test before they ran the IV Potassium Chloride and there was almost none in his urine.

3) you can have low potassium for a long extended period of malnutrition. - and even though he hasn't eaten much he has eaten and received K through his IV fluids.

4) you can have a shift from your blood to your cells.

None of them really work perfectly. So it didn't suprise me when the doctor mentioned looking into a new diagnosis for Aiden. Maybe an additional? Maybe he wants to replace the orginal? I dunno. But I can tell he is trying to make sense of all of this. Maybe he is looking for a better name.

SO he says that he thinks Aiden should be tested for hypokalcemic periodic paralysis. Seriously, I am pretty sure we can say this isn't what is wrong with Aiden. But it is so nice to see This very experienced Nephrologist, spend so much time on Aiden, trying to make sense of so much. I am never mad when a nurse or a doctor works hard on my child's case. Even if it is wrong. It is an honor to see these people take time to help my child. Even if it doesn't help. I am thankful for the times it does.

I have been through this so many times, Excited or sad by the names of new diagnosis thrown out. I used to spend time researching and learning about each one. But have learned that there may never be one single thing we can blame it on. Well except dyasutonomia.

Most people see Aiden and see this vibrant amazingly normal child. They don't understand how frightening some of his labs and some of his presentations are to the doctors. Nothing about this is simple, nothing about it makes me feel comfortable. I haven't really ever slept a good night sleep since we found out his heart slows dangerously low at night (in 2006). I never really like to make plans because nothing seems certian for us. This is tough, espeicially day 7 in the hospital. But there will be a time, where Joey and I shove it away, lean on our faith and look for peace. The reality is though, peace is a hard thing to find.

Re-teaching myself how to F.R.O.G. Fully rely on God. Wishing it was as easy as it sounded.

So, with scary awful days behind me, and the impending arrival of Joey ahead of me... I am going to just let this one go. Give it to God, pray He takes this burden from us, gives wisdom to our doctors and heals our child.

Thank you for your prayers. For reading the site. For sharing it with your churches or family. It means everything. Thank you to the friends who call or show up even if I can't talk or don't want to talk. Thank you for just being there or trying to be there. Thanks for not being sick about hearing about it.

I hate this. I really do. I hope we are going home very soon. He looks good. He looks like my old Aiden. I am hoping we have gotten over the hump.

Lisa

Saturday AM

Day 6 and we are not going home today.

So Aiden's electrolytes Potassium and Calcium are way too low again. Strange condsidering he has had continual Potassium fed through his IV for 6 days. The fancy terms for that is hypokalemia you can read all about it HERE . He also has very low calcium. Called Hyporcalcemia. Same basic idea as the first.

This is often found when you are DEHYDRATED!!

OK to simplify why I am so frusterated with this let me give you a defintion of low potasium:

"Hypokalemia: A low potassium level (hypokalemia) is often caused by use of a diuretic. Many diuretics cause the kidneys to excrete more potassium (as well as more water) in urine."

Problem is, Aiden is not on a diuretic, he infact takes an ANTI diuretic. Infact he is not only taking an anti diurtec, but is also on IV fluids with pottasium.

THIS is why my kid confuses everyone.

I don't say that with pride! I don't say it like, 'wow my kid is soooo complicated.' like I should win some kid with a tricky body award. But instead I am saying it in desperation. This is very difficult to go through and understand. His urine output is out of control. He takes medication (double adult dose) to RETAIN fluid. Why is this broken on him?

I am so frusterated.

Anyway, so just to add to the eyerolling, the plan to stop the dehydration? Stop the IV fluids. Yep. You read that right folks. we are gonnna dehydrate him to stop the dehydration.

And you know what? I bet it works!

We also are stopping (at least for now) the anti-diuretic.

It is a wicked web of confusion. My nurse said, "I think they consulted Neurology. No nephrology?" Which is it? I said..."Who cares why don't you call an orthopedist and we will get him finally cured!?

OK yes folks, today is day 6 and I am getting cranky. It is a beautiful day, pretty weather, my husband just finished telling me all about the knee slappin shin dig in south georgia he is at. Family I haven't seen and would love to, celebrating Thad and Brooke's wedding. I know our friends are frolicking in the streets, playing at parks, boating, whatever.. and here we sit. Cranky.

Of course you know I am kidding. I am not cranky that others aren't dwelling in our hospital room, I am glad they aren't. This really isn't any fun.

I do want to give a few shout-outs to whoever runs the thermo-stat here at the hospital. I actually didn't know it was possible to freeze and shiver then only moments later sweat! Thank you showing me how effeciant my body can be in extreeme tempature changes.

I also want to say a big shout out to the designers of my hospital chair. Wow. I bet you had NO idea, how much you would help a parent stay awake. You know it comes in handy when you are changing their bed 4 times in one night from over active kidneys. Thank you for thinking of me, the mom, I didn't need sleep. It was just for looks.

Lastly a shout out to the makers of the hospital towel. Thank you. Thank you for making the towel the size of a wash cloth. I used to hate when I had a small towel. It would make me feel fat to not be all wrapped up. But with your freakishly small (and scratchy) towels, I now know that I am not fat.. the towel was just small.

And that is it for the morning installment of momma has lost her mind.

Thank you all for the prayers. I am thinking we need to keep praying. In all seriousness, this electrolyte balance is the reason why he has low energy, and muscle strength. And I guess it can effect his heart too. Sigh.

Hoping this is figured out soon.

Love ya'll

Lisa

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

Friday Night Update

Another pulitzer prize winning update gone to bad internet connection. Like a game of Russian Roulette, I am attempting to write it again.

So. Today has been chaotic to say the least, and with the sleep deprevation, I can't really go into details. Basically Joey has left town, barely making it to his brother's rehearsal dinner with little Mason. I am here still day 5 in the hospital.

Aiden's WBC kept rising more and more and like a mystery we can't figure it out. Well thankfully it has dropped back to normal. Again for whatever reason.

People keep asking, "what triggered this?". I dunno. Maybe it was the tamiflu. Maybe Aiden caught a virus that triggered the dysautonomia? Maybe He had his whacky dysautonomia earlier this week and then caught a little bug in the hospital and it caused the second admission? Maybe the sun has shifted on it's axis one millimeter. Maybe it happened because I put my left foot in my pants leg this morning and not my right foot? Maybe....

You get the picture.

Some days I feel like we are totally making this up. I mean NOT US... but them. You know the whole creaters of dysautonomia. I mean what the heck is this thing? No one has heard of it, no one understands it. We don't know why it happens. We are all just guessing.

And what a feeling of comfort that is. Let me tell you. Having not one nurse have a clue about what this is, is not exactly comforting. They keep asking me, "does he just not DRINK enough?". Ummm... no. It isn't about how much he drinks. If the kid is dehydrated with IV fluids running for 5 days, I am pretty sure one sippy cup less or more isn't gonna make a difference.

It kills me that when we get admitted it is always under "dehydration". It just makes me roll my eyes when I see it on every single discharge paper. Sounds like a pretty simple fix. Ya know, give him water?

So I hope this is some comfort to those reading this who have ever read it in the past or currently and just "didn't understand dysautonomia"... well you aren't alone! I have no earthly idea what is going on, and frankly I don't think anyone really does.

So. With all that off my chest, I will let you know.. Aiden's WBC has gone back to normal and he finally has perked up. He has had a pretty good day. I am hoping that if he can keep eating some (he has barely ate in 3 days) and he can show some more energy than we can go home to rest. I am for obvious reasons pretty nervous about going home and then coming back, but I just don't know what else we can do. If he gets sick again, I am going to have to figure out a way to get him to Ohio.

So today was a day of craziness, I am ending the day still whirling and feeling uneasy. But I am also very grateful to some of the friends who really just showed their stuff again. Thank you to those who have just been there, running errands, sitting with me for hours, getting me some very yummy Greek food. You are my lifesavers. So special to me.

We will get through this, just as we always do. I will not let this beautiful year of health be shunned by a really crappy week. This is hopefully a temporary bump that has reminded us of how good we have had it.

Keep praying, and believing. None of us have stopped here.

Love and building strength,

Lisa and the Lionheart.

Thursday, November 5, 2009 8:55 AM CST

6:30 PM

OK so seriously this day has been ridiculous.

My favorite awesome-ist person at our peditrician's office (MELISSA) totally hooked us up with our old home care nurse, all the supplies, all the works.

Aiden spends the whole day in the ER feeling actually great! I mean he looked pretty good. I told him we were going home and doing the fluids, he was NOT happy with that. He really wanted to stay. Yes, I know that sounds backwards, but it is how he feels safe. It is scary for him to do anything other than what he knows. He is just a little kid trying to make sense of this.

So I convince him it is ok to go home, and Mommy would be his nurse.. but it seems really wanted to stay. The nurse took his tempature as we were getting discharged and it was 99.5. Not that impressive. But for Aiden it is. Port fever = we aren't going home.

So as I walked out to the nurses station I cringed to tell them that we NOW needed to stay and be admitted. Thankfully my pediatrican wrote two sets of orders. 1) for going home with home therapy and 2) for being admitted.

The nurses laughed and said, "well someone upstairs didn't get the memo you were leaving and so they have your room ready."

WOW. ok. SO here we are. In a room BACK on the fourth floor. Gee weren't we here yesterday? Why yes. We were.

You have to be kidding me!

OK so NOW we are going to swab him for the flu and do a culture on his port to make sure he didn't get a line infection from earlier this week.

You can get fevers with dysautonomia, but we havent' seen that personally. So this investigation makes sense.

SO, prayer request:

PLEASE pray he has peace as they are swabbing his nose. This is one of those things that makes him hit the roof. He already had to have a 200lb paramedic in the ER lay completely acrossed him and hold him down for the port. PLEASE GOD. no more trauma for this child.

I had a friend stop by today. A hospital mom warrior. Daughter diagnosed 3 x with cancer, bonemarrow transplant, etc... My friend tells me one time when her daughter was so upset with her port being done she started yelling, "I am going to call 911 this is child abuse!"... All the nurses and people in the room looked around and thought, Ya know in ANY OTHER setting this WOULD be child abuse. Of course it isn't. It is them HELPING my child. And God bless them for it! But to little Aiden and to that girl.. it must very much feel like it.

So please pray that this child can have some peace. We just need some peace.

Now please check out Cheryls page and leave her a note. Today would have been Haley's 16th birthday. There is a family hurting and missing their child. PLEASE take a moment to let them know you are praying or that you care. And Cheryl- we never had the time to send you flowers today.. but instead I am sending my love.

I will update later

Love you guys! Thank you for being my prayer warriors! Thank you for caring so much....

Still Believing!

Lisa

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

2:00 PM

OK so we are in the ER, his port is accessed (total nightmare) and IV fluids are running.

I have never actually begged our doctors for something before, I usually just agree with them on their advice, but I really pleaded with our doctor to see if we can do the IV fluids and morning blood draw at home. With homehealth.

OK so here is the problem. 1) I don't have any equipment -remember my big post about getting rid of the IV pole? 2) they need to re-admit him to home health, get a nurse, and get all of it organized and ordered.

This sounds easy but it would be a small act of God. Our home health only has 2 pediatric nurses that work in our area. I don't even know if this is at all a possibility. SO My very sweet pediatrician, agreed to "attempt" this to work. If we cant get this to set up and work then we can go home, stay clean, and be comfortable.

If not... then we just stay here.

The other awful thing about all of this is Joey is leaving town tomorrow for his brother's wedding. We are obviously heartbroken we can't come (Aiden and myself) TRUST me I would rather be there than here watching him go through this. So with Joey leaving with Mason, Aiden and I will do better at home. I won't have so many needs. Well except the emotional needs of having our boy get sick again.

Joey and I are hanging in there. I have to be honest this has been hard on all of us. Well maybe not Mason (who is currently eating Pizza and icecream with his grandparents).. but it has been hard. I just ask for you to be praying for 1) Homehealth to have availibilty to come to us today 2) for Joey, myself, and Aiden to find peace and strength with this bump in the road.

I will update when I know more.

Still Believing!
Lisa

~~~~~~~~~~~~~~~~~~~~~~~~`
9:00 AM

he is getting admitted again.

I just had a 'feeling' this was going to happen. he was never feeling right. We are sitting at home waiting for a direct room to be open, hoping to aviod the ER.

Right now I wish I was in cincinnati.

Wednesday, November 4, 2009 7:28 AM CST

I just spent the last 20 minutes looking at Aiden's journal history. If you are interested check out page two around November 2007. It is deja-vu.

http://www.caringbridge.org/fl/aiden/history2.htm

I have to smile at some of it, I was so 'cute' back in the day. I was a spry young thang. I would come up with really bubbly ways to say how happy we are we are going home. I would post silly photos from the past to honor our excitement. I would have funny stories to tell. Great one-liners. Now I am just crotchedy and old and bitter. (ok just for the morning).

But you know what? I don't care if this makes people uncomfortable.... I am not feeling like celebrating. We are going home, but right now this has just 'done us in'. Aiden alerted me last night that he had the 'crying feeling' but couldn't let it out. So I curled up in the bed with him and we talked and talked about everything. He cried so hard. He got it out, but it tore a hole in my heart hearing it.

This has been so much of the same. So much. Over and over and over and over. Hospitals, ER's, IV's, I am just tired and sad it happened. I want it to never happen again. But that doesn't seem likely.

Looking at the photo above from years ago, It just is one of those pictures is better than a thousand words.

Aiden standing in a hospital window, looking out. His baby brother growing up watching all of this. Aiden is wearing one of Haley's Helping Hero's T shirts. Tomorrow that little girl would have been 16. No matter what. No matter how I put a positive twist on this.... Sickness is hard. It is hard to be sick, it is hard to do it over and over, it is more hard to see your best friend lose their child, this is all hard.

SO yes, Aiden gets to go home. I am hoping this was a bump in the road. But Dang it, this road needs some new pavement! There are bumps everwhere. Praying and praying and praying that this is the last time this happens for a long time.

Packing our bags and busting out of this jail.
Lisa

Tuesday, November 3, 2009 7:39 AM CST

Day two.

Normally I say Day two from the "spa" ... but it is like pouring salt into my wounds. You see, TODAY I was finally going to use my "spa day" that I won from Mother's day. My old childhood friend Michelle nominated me for a day at the spa and I won... today would have been the day. Massage, facial, mani- pedi, gourmet lunch..... Instead... I am in the "back breaker 1000" (LeeAnne what do you call the hospital chairs??), My skin is sloughing off from the moisture sucking soaps I have used over and over. These feet sure aren't seeing any type of a pedicure, let me give you a visual...I wore flip flops here. Flip flops to the hospital = disgusting. I want to soak my feet in bleach. And GOURMET LUNCH? HA HA. Hospital food.. doesn't compare.

Enough about me... Aiden is feeling some better. Not himself yet. He is pale as can be. I hate to see him look so sick when he has been the picture of health for a long time. He is handling things ok. Feeling sad and missing his puppy Biscuit. His exact words were, "My heart is breaking into a million pieces because I miss Biscuit so much." Wow. OK.

SO his pediatrician just left.. the plan is to keep him on fluids till at least tomorrow and see how his labs look then. If they are stable then maybe let him leave tomorrow. I hope that happens. This was so intense compared to the past ones. I was trying so hard to decipher if I was just not "used" to it, or if this was just worse. It was worse. He isn't recovering like he normally does either. I mean, he is ok... but he isn't himself. He is pale and weak and just sitting on the bed. Normally he does a lot of harrassing of nurses, and goofing off. I haven't really seen him crack much of a smile. I just think he is wiped out.

I don't know what it feels like to have your whole endocrine, blood pressure, vascular system, heart, kidneys, and other body parts go haywire in a matter of minutes. I feel like crying when I think about how desperatly sick he was in the ER yesterday, I hate seeing my child like that.

I have to admit, looking back into the past with Aiden's crisis's it will be a little bit before I see the color in his cheeks and his normal self. My biggest fear is that we have just opened up a can of worms. I am SOOOO scared this just didn't start over.

This has been a big shock to Joey and myself. I am still just trying not to panic and start screaming, "the sky is falling!" but it is my first inclination. I really want to run around and scream something.

Well anyhoo.. I am 1/2 asleep so I better end it here. I will update when/if I know more. Thank you for praying. Thank you for the notes in the guestbook, it means a lot to us.

Love- Lisa

Ps/ here is a little video of my sweet Tiger Kitty Mason. It's quick but see his little growl.

I miss him!

Monday, November 2, 2009 7:18 AM CST

2:30 Update

Well.. he is awake. Praise God, he is smiling and watching TV. We are in a room. I can' EVEN believe this!! Got labs, his hemoglobin is really high, his labs are whacky but it is all the usual when he has dysuatonomia. So crazy.

I swear I feel like we just got re-diagnosed because I was sure we would never deal with this again. Ok I know I am an optimist.

Our doctors think there is a chance this will never really go away. The damage is done but hopefully with out the medication agrivating it we will have less frequent episodes.

All I know is this began in November, always happens in November, and is here again in Novemeber. What the heck? Maybe it is the November-itis? I mean seriously how strange.

I am sporting a MASSIVE migraine at the moment... I am hoping to see my mom soon. She is bringing me lunch. Mom's need mommy's too. Anyway... I will keep ya'll posted. But thank you sooo much for praying. This totally stinks. I am completely shocked and devastated that it happened... but more because I am trying to not let it dash all the hopes I have had for us being 100 percent cured. Anyway, it is what it is. And we will deal with it.

Love to you.
Lisa

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

12 noon Update

Well he is asleep. We are still in the E.R. Room. Just waiting for a bed to be available for him to be admitted.

I will be honest with you, it was the worst I have ever seen him with his dysautomonia 'crisis'. The ER doctor said it was a full addisonian crisis, which means nothing except we can call it that vs saying "Aiden is doing that thing he does". Whatever. It is terrifying to see, and it goes from bad to scary in a short period.

Normally by now after getting IV fluids, IV Zofran and IV hydrocortizone (specific for addison's crisis) he is better. Normally he would be jumping on the bed and telling the nurses how to do their job. Unfortunatly he is still very weak, and sick in his tummy. Currently with him asleep I am feeling a moment of relief, because everytime he says he is feeling 'thirsty' or pain in his stomach or any of it, then I sort of panic. I keep having this conversation in my head. I just feel like screaming and saying 'you aren't supposed to be back! we are done with this!'.

They have a theory.

Aiden was placed on Tamiflu last week because of his brother having the H1N1. So to protect aiden from getting it, he went on tamiflu. It has a neurologic component with the drug, sometimes causing side effects (neurologiically). They think the medication triggered whatever in his brain triggers this awful stuff.

Ok. fine. SOunds good to me. BUT... I am terrified it is all starting again. I just can't do it. I mean I can. But I don't want to. Like really really really don't want to.

Anyway... keep praying please.

And also I never ever say this, but above this there is a spot that has a PO box for Aiden. if you want to send him a little get well card please feel free. I know he would love to see that. Thank you to Mrs Pam and the preschool Penpals for always sending him a card. We always appreciate it.

I will update later today.. Hoping to see some smiles soon.

The Team Mom,
Lisa

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

8:00AM update

Aiden is in the hospital, he is currently in the ER. He has been battling his dysautonomia for the last week.. I was hoping it would just 'go away'. He woke up with his fainting/ vommiting/ blood pressure crisis. I am sitting and waiting for his IV zofran to kick in.. He is sooo upset. I have never seen it upset him like this.

Please pray.

I will update soon when I know anything.

Lisa

Monday, October 26, 2009 7:24 AM CDT

Ok so we got hit with the H1N1, sorry for the lack of updates. Mason got it, (unnofficially). Aiden is on the tamiflu to help prevent him developing symptoms... and so will see what happens. I am praying it is done in our house and we can just stay healthy.

So I have a quick update so I can go back to my regularly scheduled bleaching of my home.

It is one of those updates that in my head I think, I am gonna make this a one liner.. just say the sentence and post it and it will be dramatic and wonderful. Except I don't think anything I have ever said or typed in my life has been only ONE line. So lets me throw in some photos, about 30 lines, and then be done with it.

Breaking up with the IV pole.

Last year playing his DS with it.

Last year decorated.

I have so many photos and home movies with it being used as a coat rack, something to hang toys off of. It has been such a fixture in my home I sort of just forgot about it. Forgot what it stands for. I mean seriously it isn't like every mom in America is saying, "Get off the IV POLE! It isn't a toy!"

But this past week, We did something crazy. WILD in the lives of a family with a chronically ill kid.

We got rid of the IV pole.

See ya.

Gone.

We don't need it anymore.

I don't want it anymore.

I was furious and devastated it lived in my house even for a day.

It sucked the breath out of me when I would see it hovering over my child.

It is no longer welcome in our home.

It is gone.

You know we live in a 1000 sq ft home. Joey, myself, Aiden, Mason, Rolex- the dog, Biscuit- the ummmm (censored), and Bogee the fish. Having the IV pole leave our house for good has made for so much extra room!

Infact, it felt almost emtpy around here.

So we rescued a kitten.

Yep, we traded in the IV pole for a kitten. THAT is what it is ALL about. Good bye to the sick days... looking forward to the future.

Life is good!

Love to you!
Feeling the Victory,

Lisa

Tuesday, October 13, 2009 7:29 AM CDT

Ok I know this update is later than I said it would be, but it has taken me some time to digest it all. To really let it all sink in.

I had to do some math in my head, I had to do some real looking back so I could tell you all from my frame of reference, WHEN the last time was that we felt this way.
As I sat at the last appointment on Tuesday this week, sitting with our transplant team, talking about Aiden, talking about this past year and now the upcoming year I had this wave of rememberance wash over me. You know like when you hear a song that brings you back to a time, or a smell that immediatly makes you think of a person. It was instead an emotion... an emotion I hadn't felt in many years that brought me back to a place that I had litterally forgotten. I felt more than hope this week... I felt like we had made it to the finish line. That the entire destiny had just been re-written... that we finally made it back to a place where an entire appiontment was nothing but good news.

Back it up a little. We arrived Monday to draw a million labs, to find out they don't carry EMLA cream in the lab. NOR do the carry 'freezy spray'. This was a shocker and a major point for All Children's lab dept. I had already claimed I was NOT participating in lab draw or IV's or anything difficult. It was MY day off from holding down my child and hearing him cry. So when I heard Aiden had to get 12 tubes of blood drawn and had NO numbing product I looked at Joey and said, " I am OFF the clock buddy... YOUR turn!"

I sat in the waiting room with Mason waiting nervous. I was sure at any moment, Aiden would be crying and calling for me. Moments later, he comes out, points to his eyes and says, "Look... do you see ANY water? Dry!... my eyes are dry!" I was soo proud of him! And of course Joey was all smug and made a comment like, "that wasn't hard."

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Daddy and Aiden, getting labs... No tears here!

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After labs we had to go over to radiology and have a very long very boring ultrasound of Aiden's innards. Aiden likes to call this the 'tickle test'. The ultrasound lasted over an hour but thankfully I had a good stash of magazines and they had Toy story 2 playing on the TV for Aiden.

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

Snooze central... Liver and other organ ultrasound

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And that was IT for our first day of testing! Pretty simple! Infact so simple it just felt weird. The last year and trip from earlier this year in April we were rushing from one ologist to the next. Aiden had procedures, scopes, and so many tests it was horrible. Infact that is the way it always has been... rushing, talking, hearing terrible awful things, and then moving on to the next doctor.... This trip, we purposly didn't make appointments with certian specialists because honestly, we needed this type of a visit. One that was simple and focused and positive. Aiden needed and deserved that.

So this is one area Cincinnati is different than most all hospital in the country. They pioneered this service and teach it to other hospitals. They have a service for out of state guests that is amazing! They make reservations for you, book your hotels at discounted rates (no they don't give you the names for the hotels.. THEY book them, THEY send the shuttles and connect you.) They also set up reservations for free local attractions, and we love to take advantage of this because 'Free' fits perfectly in our budget! :)

Here is the boys in the Guest services department at Cincinnati Children's. They are sitting in front of the map of the United States. This has tons of little push pins in it from children who have traveled all over for this wonderful hospital. We have a little red pin cushion sticking out of St. pete Florida... we love to see that when we visit.

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check out the handy bag full of local attractions, goodies and stuffed animals for the boys. I know ths isn't all that important to you guys, but this is sommething that facinates me since I work with the Family Advisory Council at our local hospital.

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So we went to the museum! The boys love it there!

The museum was the old train depot and converted into a location for all three (history, science and children's) museum. We had a great time!

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We were kind of all floating on cloud nine but knew the next day was going to be more difficult.
And it was.

Aiden had to have a GFR. His two 'worst enemies'... imaging and IV's in his hand. I will skip the details but it was really hard on Aiden in the beginning. He really has a phobia about a few things and this just is one of them. A difficult morning, but we got through.
With this test it tells if the Kidneys have any unseen damage due to the medication's transplant patients have to take. A lot of them are nephro (kidney) toxic so this test is very important in order to 'get ahead' and be pro active for the patients care. Pro-active the theme for Cincinnati.

This test is actually a series of images (on a machine that looks like a huge MRI) and lots of blood tests. Muliple ones over several hours. So there was a lot of waiting... and waiting.

First we started with homework...

but that felt kind of 'mean'... so we then we moved on to making Legos....

and more legos....

and then we played with the legos...

here is Aiden flying his lego airplane in the halls of the hospital. This to me catches the true spirit and difference of a CHILDREN'S hospital. They are still kids, play is their job. What a valuable lesson kids can teach us.

So after the drama of the GRF, we headed to Liver clinic. We were feeling especially sassy at this point, and got some more silly photos....

check out those guns!

ready to go!! bring on the doctors!!!

Although Mason wasn't too amused by all of this. That kid can sleep ANYWHERE!

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We were sitting in the room and had already discussed all the amazing progress with our coordinator/nurse and just waited for our transplant doctor to come in.

The door creaks open and she says.....

"So... are you a new man? A completely new little boy now?"
And that said it all.

She was grinning ear to ear and so was Aiden. I felt the sting of tears just waiting to escape and saw Joey smiling from ear to ear. It is real. He is better... the prograf was poisoning him.. it has worked. I just can't believe it.

We talked about sweaty feet, and normal blood pressures. We talked about how so much as changed with energy and how he rarely complains of headaches. I figured because we are so new to being off of the prograf that we would get a pat on the head and say, "well phew it worked for now" and just be on our way. BUT this is where they are different.
I have learned that there is two main philosphies to transplant.

1) If it 'aint broke.. don't fix it.
2) push the envelope and keep working for even better results.. which can be risky.

I can honestly say that neither are more right nor more wrong than the other. Both have their merrits when it comes to transplant, but as you can see they are also very subjective thoughts. Because with number 1)... what does "broke" mean? For us, Aiden was broke. Sure his liver numbers were perfect, but the rest of him was falling apart. Now we have the rest of him better and his liver still perfect, so I figured we would take on the number 1 philosphy again.

Nope. Cinci wants to do more. They have a new plan.

Next it is the prednisone. They want to keep lowering it, they want him off of it completely. And if not completely no more than 3mgs a day. He has completely stunted growth due to the steriods no significant growth since 2006, and lets face it besides his bones having issues.. steriods are just not good for your body.

ALSO

They want to bring him back to Cinci in January and have a liver biopsy to check at the cellular level for rejection and change.. and at that time... we will begin our prednisone wean.

ALSO

We will begin our food challenges, to test for foods that he has lost allergy to because of coming off of the prograf. I can't even move past this one. Can you imagine if he could leave there with even one measly new food? After having 21 anaphylaxises and allergic to over 72 tested foods... THIS is a miracle.

ALSO

They want to re-scope his esophogus to check on his eosinophillic disease. Believe it or not.. this is also directly linked to prograf. Infact our old GI doctor in Atlanta wrote 'the' paper on it. :)

If THAT wasn't enough:

If all the above is a success... Aiden will have his PORT REMOVED!!!

I was actually happy... no I was THRILLED... to just stop where we are today. So this really took me by suprise. I was shaking I was so happy! I just can't really express how this makes us feel. Joey and I just kept saying, "wow. wow. wow"... pretty much speechless at all the amazing change.

And now it comes to the place in my update that I am still having a very hard to writing.. I just can't seem to put it all together. In words. I just don't know how to express how this all feels to us. I guess I never was able to fully express the way it felt to see him in pain, sick, and heading down hill... so is it double difficult finding the words to say how happy we are. Happy seems so insufficient.

Lets see if the thesaurus can help me:

blessed, blissful, blithe, can't complain, captivated, cheerful, chipper, chirpy, content, contented, delighted, ecstatic, elated, exultant, flying high, glad, gleeful, gratified, intoxicated, jolly, joyful, joyous, jubilant, laughing, light, lively, looking good, merry, mirthful, on cloud nine, overjoyed, peaceful, peppy, perky, playful, pleasant, pleased, sparkling, sunny, thrilled, tickled, tickled pink, up, upbeat, walking on air

Nah. None of those. it is more than that because I am feeling Peace with my happiness. Lets see what the thesaurus says for that:

amity, calmness, composure, concord, congeniality, contentment, equanimity, harmony, hush, lull, peacefulness, placidity, quiet, quietude, relaxation, repose, reserve, rest, silence, stillness, sympathy, tranquility

Nope.. it is more than that, because I am feeling Hope with this peace and happiness.

and with all the words the thesaurus gave me for synonyms, it was the DEFINITION of hope that best describes my feelings.

"A longing... a Dream."

There has been a dream, a longing, a hope, a prayer for my little boy. Years on my knees begging, praying. I would say, "IF he could just be less allergic." or I would switch it up and say, "God JUST let him sweat, so he can play outside" or in my darkest times the prayers were more desperate, private. But now I am feeling like it is a

dream.

I feel like we hit a re-set button on Aiden. It brings me to a very happy time when Aiden was post liver transplant. The complications of his transplant had begun to die down and our visits to Atlanta were so wonderful. We would love to see our nurses, and just walk up to that hospital like victors of a great race. I loved nothing more than seeing our favorite GI doctor and us all talking about how 'cute' Aiden was, and how 'perfect' everything was going. There was a smell to that place, a familiar feeling to being in cinci this trip. Hearing Dr. Yazigi call Aiden a "new little boy"... just flew my memory back in time to Atlanta. Another time and place where we felt nothing but happiness and victory.

I can honestly tell you that until recently, maybe even this week... I haven't felt that feeling of happiness. Sure we look like a happy family, but like you all say to me, "How do you DO it?"... I just hold my breath. I didn't even know I was. But I was.

It came to me on Saturday night a few nights ago. We had worked in the yard all day, put up our fall decorations, and the boys played in the yard.

BOTH of them played in the yard.

I sat on my side walk, and with out any real reason I started crying. It was like in some dumb movie where the person 'can't' cry and when they do, they feel the tears in disbelief. That was me. I was just happy. Aiden had lasted longer than 5 minutes in 90 degree weather and he was sweating. He was playing, and not holding his chest, and not laying in the grass, and not begging to go inside. He didn't loose his bowels, and cry with headache. He didn't need to be soaked in ice and water. He was playing on our sidewalk like every other kid. Like he used to before this all happened, years and years ago. I have ooohhhh so missed that little boy. That sweet little 3 year old that we would have to bribe to come inside.. please Aiden! "No mommy, 5 more minutes." It was like he was kidnapped, taken from me. Taken from his own self.

Oh I have so many thoughts and so many things I have to say, I think that is why I have taken so long to update, I had to CHOOSE which thing I wanted to share first. And I guess that is it... I needed you to know, that all those times when we thought we were happy, we always held on to pain.

This past week our family made the journey from the HOPE of it... and stepped fulling into LIVING the 'longing, and the dream.'

Maybe I wasn't 'believing' like I said I was.. because I am truly in shock at all of this. I just can't believe this is happening. He actually is better... and it was ALL because of that medication. un. real. That medication was poisoning every part of him, besides his liver.

I will end on that note, I can't really see the key board now because of my own tears. But just know when you ask me, "How was your trip to the hospital. How is Aiden?"

Today is a day of happiness.

Love- Our entire family on Team Aiden.

Sunday, October 4, 2009 8:35 PM CDT

Brrrrrrrr.........

this is what FALL/autumn feels like? I totally forgot! We are in cincinnati, I am nestled in the corner of our La Quinta Hotel room, updating ya'll on our travels and adventures.

First let me say, Mason has recovered perfectly! Now he looks like the typical boy with a little bruising on his face. Phew! After the initial swelling I was so afraid he wouldn't look the same! Yes, mom's who have been through "all I have been through" still get worried about the superficial things too. But c'mon.. Mason is sooo cute, I couldn't help but worry. Thankfully i was just being silly and he is as adorable as ever.

The trip we have been on has been amazing. We started the journey of course in Perry to drop off the Demon dog (biscuit) and Rolex. It was so fun hanging with Nana and Babu... and Joey and I enjoyed some time together strolling down the country roads of his hometown. He would tell me story after story about each dirt corner or steep hill. It was so fun just talking to Joey uninterupted and with nothing to do, that I didn't care WHAT we were talking about, It was heaven to me.

We spent the next few days of our northward jaunt in the mountains...a good friend found an amazing hide-away cabin in the midst of 100 acre woods. It was breathtaking. OUr two families nestled in and spent some time camping and hiking in the most beautiful area ever. Of course I was mainly relishing in the 'cold front' that had blown in! We lit the fire at the camp and sat out under the stars just soaking in all the goodness! I am still perma-grinning about that part.

Next we drove to TN to stay with our good friends, The Vincent's. (You all know them as "Angel Haley's family" or my friend Cheryl) It was a special reason for attending, the main reason we took so much time off work, and planned the hospital trip for this very week. This past Thursday Oct 1st was the 4 year anniversary of Haley's Passing. Instead of sitting quietly in our sadness, Cheryl and family had an incrediable Celebration of Life for Haley. I was honored to speak at it, but more honored to just spend that time remembering and smiling for an amazing little girl.

Of course the beautiful fall weather was in full effect in Tennessee. Our friend Laura (my new adopted sister) went along with us on many more country adventures. We did a 10 acre corn maze, hiked along country lanes, and played at the parks and lakes. Amazing how much there is to do outside when it isn't 100 degrees, and 100 percent humidity! Mother Nature in the mountains is at her finest! The tips of some of the leaves are changing. The best part about all the hiking we did, it is free! Bruce, (Haley's dad) even took Joey Kayaking with their Kayaks, and now Joey is hooked! Like seriously hooked.

So after Tenessee we headed north-er and are currently in the most northern part of KY outside of Cincinnati. Yes. Cincinnati. I feel like it is the Debbie Downer part of our trip. We have had sooo much wholesome fun. So much laughter and QUALITY time. We haven't had a family vacation like this in years, basically before the poop hit the fan. Last year Aiden couldn't barely walk from the car the house with out being completely wiped out.... so this year seeing him 100is old self has been a rejuvination of our souls!

So yeah.. Cincinnati, we have arrived. (wahhh wahh woooww- Debbie Downer noise for all those Saturday Night Live watchers) Aiden is now officially fasting. No food till tomorrow afternoon. The morning I know he will be grumpy, I am not looking forward to that.

After the 1/2 day of appiontment/ testing we might hit the cincinnati zoo because it is free for kids from the hospital, and the last time we were there I was crying in the bathroom because Aiden was soooo sick. I actually hate that place and would like to make a new memory there. PLus did I mention it was free? The theme of this trip! Mother nature and free passes.. we love it!

So, I know this update is kind of lame. But after all the years of drama, Lame is the new Awesome! Today we spent the afternoon driving the countryside of northern Kentucky and happened apon a fall festivle called the Kentucky Wool Festivle. I loved it. I loved loved it. Lambs, wool turning into yarn, petting zoo, crafts, mud, John Deer tractors on all the eye can see. Heck full grown men in over-alls! Now THAT's COUN-TRY! We spent the rest of the day pulled off the side of the road to some creek and waterfall skipping stones. This is wayyyy better than the wii. W.A.Y. Better.

So yeah, tomorrow isn't the best, but we do hope to go hang with our super awesome brave survivor Liver transplant AND cancer friend Heather and family tomorrow night. (She just finished her last round of chemo! Way to Go Heather!) Then More testing and appointments on Tuesday.

So I will have a bunch of pictures posted, and more and more coming. I am on disk #2 after filling my camera twice.

Thank you so much for checking in. Thank you for praying. Thank you MOST OF ALL for BELIEVING along with us. Hoping this week we only hear positive news, and lots of congratulations for this remarkable wean off of prograf.

Love and hugs and travels,

Lisa and Family.

Saturday, September 26, 2009 6:48 PM CDT

OK I know, no update in a while. Not because I didn't have a lot to say, Things have been hectic.

This wednesday Mason celebrated his 4th birthday. It was a quiet day until he had a terrible accident at the playground. He is recovering from a collision on with a girl swinging on a swing. He had an incrediably hard hit to the face and had to have TWO CAT scans in two days to check for broken bones. It seems there is some damage to some sinus bone (medial axis something or other) and we will do an MRI when the swelling goes down to make sure it just wasn't gross swelling. My pediatrician said it looked like Mike Tyson punched him square in the face, and others said it looked like a car accident.. me, well it just knocked the wind out of me litterally.

To spare you the big lecture on the whole "God only gives you what you can handle" being the biggest load of balloney, see my journal history. This was just plain unfair and traumatic.

Thankfully, now 3 days later, the swelling is down a lot and he is able to breath some from his nose. Another crummy birthday in the Hawk House. And another Birthday schedule when we have major hospital travel, news, or traumatic information.

Yep.. that is right, I am in the midst of my last minute packing for our trip to Cincinnati. We are leaving tomorrow with several stops on the way. First at Nana's house, (where Aiden can also see Murph- his puppy dog pen pal) then to the mountains for a night of 'vacation' and see my God son and his precios baby brother! Then we will head to Cheryls where we are honored to attend Haley's celebration of life, then to the hospital for a few days of testing and appointments. PHEW!

I know it sounds lame, but I am excited to go! I am excited to get away with Joey and the boys. I am excited to see loved ones, I am excited to get out of this heat!(in the 90's still here). I am excited to have a 'vacation' even if it is a hospital trip... but most of all I am excited to see Aiden's doctors and just THANK them, for giving us the chance with Aiden.

It isn't totally perfect... but he is doing better. I wouldn't say he is cured of his problems by any means, but it has only been a little time. We DID get labs yesterday and ..... they were perfect again. His eosinphils did unfortunatly rise back up and that coincided with some GI problems and other issues. But the liver is STILL not rejecting with no prograf.

I am not sure when I will stop saying that, or when I will be comfortable with moving out further in labs, but for now I am happy to have the celebrations every few weeks. It is totally amazing. No rejection is amazing.

So moving past the medical garbage and moving past the trauma of Mason's terrible accident... onto the celebration of the most precious little man's 4th birthday.

If you know Mason (aka May May) in person you know I am not just saying this. Mason is sooooooooo sweet. He is SOOOOOO special. OK yeah sure I admit there is 'some' bias involved, but mason is just my angel. More for me, I am sharing for journal's sake some tidbits about my May May. Stuff for me to read years from now, to look back and never forget:

Favorite toys: rocket ships, light sabers, legos, stuffed animals, and little tiny treasures from the yard.

Favorite color: He says every day, "I wuv all da cowors. I wuv blue, and black, and red, and o-range, and yellow, and gweeen. But I don't wike white. It isn't pretty."

He is a peanut still, wears 12-18 month shorts 2T shirts and size 7 shoe.

Favorite foods: Teddys! Loves his pediasure, chicken nuggets, sprinkle cookies, and cheese bagel bites.

Favorite songs: Veggie Tales, Silly songs by Larry!

He loves puppies, and babies, and anything cute. If it is a 'baby' version he loves it. It can be a baby grape or a baby blade of grass, Mason thinks it is cute.

He loves his big brother and his best friend Ian. He wants to be an astronaut or a puppy 'nurse' when he grows up and he is still a Daddy's boy.

He sweats puddles when he sleeps, and wakes up early every morning before the sun is up. He is so funny, and knows how to put on that innocent charm that melts his Mommy's heart.

I know God gave us this child, perfectly created for us. He is the best balance to Aiden's strong outgoing personality, as he is a thinker and a listener and so creative. He proved to me the whole idea that no matter what, you can have two children raised in the same home, with the same parents but create two totally different people. He has so much courage and strength but he is so fragile to me. I always want to protect him and keep him close and he is just my little love. He has melted my heart in a different way than his big brother. I love his long lashes and bright blue eyes, he looks so much like his Daddy, I wonder if I had any part to do with him besides those 9 months and 12 hours of labor.

He is so sensitive and sweet. He lives to please. He rarely ever needs any discipline and if he does just a little look often is more than enough. I love Mason so much. 4 years old.. I just can't believe it. I feel honored to be his mommy and know he has completed our family fully.

Happy Birthday my darling little boy... I love you to the moon and back and then back one more time.

I will be updating with photos all along the trip..so stay tuned for the semi annual hospital 'vacation'.

On the road again,
Lisa and the Hawk clan

Tuesday, September 15, 2009 2:30 PM CDT

Almost 5 weeks off prograf..

NO SIGNS of ANY rejection!!

Not only that, but let me just take this a little step further.

1) headaches have minimized
2) blood pressure hasn't budged .. perfect levels all day
3) nausia in the mornings decreased
4) energy levels are totally normal
5) he is starting to SWEAT!!!!
6) his perpherial eosinophil level was 1 today. that is normal! That has never happened!

We are hoping to see this happen all the way to the end. we are praying allergies one day will be cured, his dysautonomia totally gone, him able to sweat and play in the middle of the day with out being over heated, we are praying his CBC fully normalizes, his GI eosinphils dissapear.

So I haven't share this story with anyone, I know it sounds silly, but I didn't want to jinx it.. (yes.. jinxing is dumb and not real, but if I have to stand on my head and sing the ABC's to make him better I will.. so just go with me on this one). I was sitting in the kitchen the other night and Joey had both boys with him in the front, moving our boat around back to where he stores it. Joey knows to be careful about Aiden over heating. So I don't actually see what they are doing, but it seems that Aiden was playing in the front, was in and out of the car and hellooo it is Florida so it was hot as hot can be. All I know is, the front door swings open, Aiden comes running in screaming for me. It wasn't panicked screams.. but it was intense.. I jumped up and ran to him.

Aiden: "MOMMY!!! FEEL MY CHIN! FEEL MY HEAD!!"

I knew exactly what he was doing. He does this a few times a day every day for the last 1 1/2 years... he wanted me to feel his "sweat." (Now that I am typing this, it actually sounds kind of sad.) I usually exlaim something like, "YES you are STICKY" sometimes almost like a little boost of self esteem. We oohh and ahh over it. It is sort of what we do because it makes Aiden feel better about being sick.

Anyway, so I reached for him, as usual to feel his "sweat."

I swear it was one of those moments where you just HAD to see to believe it. Aiden had SWEAT BEADS on in between his eyes, on his top lip, his chin, and his hair line was WET.

I must have looked like what Doubting Thomas looked like when he reached in Jesus's hands and felt the holes.. but I was in disbelief. I actually asked Aiden if he was tricking me and if he put water on his face. I was serious. I just couldnt' believe it.

If today is your first day ever reading this page, you might think I am a total nutcase for 1) caring about sweat 2) talking about it, doubting it, making little skits about stickiness. BUT if you have followed this site since minimally last year, you KNOW what this means.

It is the only, OBVIOUS-easy to see-visible, sign of Aiden's dysautonomia. I can check labs, and blood pressures, I can see he isn't getting admitted.. but... HE is making sweat. He is actually cooling himself.

He is having the CORRECT automatic (autonomic) function when he gets hot.

In the past, him NOT sweating is DYsfunction of the automatic (autonomic) parts of his body. Dysautonomia.

So it is working. Stopping the prograf is working. I am sure our transplant team would say, "well time will tell.." But as his MOMMY as the M.D. (mother doctor) It is working. NO amount of heat or exposure would ever create sweat in the past. He would instead get a fever, his core body tempature rise, become over heated, exhausted, sick to his stomach and give out.

OK.. if THAT wasn't enough, lets go back to the eosinphils... The only thing that makes his eosinophils fall into normal range is if he is on TREMENDOUS amounts of prednisone (steriods)... today his perpherial eos level was 1. HELLO! 1??? Miracle.

I want to say, God is SO good... but I need to say more than that. I need to tell you... He is always good. Not just because things are going so well, is He good... but even back last year, He was good. Even two years or three years ago, when we were lost, terrified, begging for help... He was good. We not only Praise him for our blessings, but we cling to Him in our suffering.. because even though it was hell on Earth... it was the path we walked to get to this victory.

Don't get all excited that this is it. People we are in for the long haul.. Stay tuned, we are traveling to Cincinnati Children's Hospital in 2 weeks to have a few days of testing and seeing our doctors. I will get into more detail on my next update. In the meantime,

Aiden is doing his happy dance, Joey and I are doing our happy dance... why don't you join us and do some happy booty shaking too?

Amen!
Lisa

Sunday, September 6, 2009 12:11 AM CDT

Oops.. didn't update this week! But the whole 'no news is good news' is true. Well half true.. the other half is.. I have been running around like a chicken with my head cut off! This whole week of schools and volunteering in classes to make sure Aiden is safe has WORN me out!! Not to mention I have to get Mason ready for his class, leave one school travel across town to another school.. pick up other kids, then travel back to pick up the other one. (how many kids is that? I lost count) Yeah yeah yeah.. there are mom's who are professionals at this, been doing it for years, but I have just been SPRUNG into this lifestyle. It's all good.. just umm different than the 'good ole days'.

Of course if you ask either Aiden or Mason how they are loving their lives.. they would give you a boisterious.. "YIPPIE!!! MY MOMMY IS THE BEST CAB DRIVER EVER!!" So alas, I have taken that as my 'good mom' award and won't gripe about the fact that I personally perferred the long mornings sipping coffee, and chilling in my jammies.

SO on to the medical stuff... As of tuesday Aiden had been off his prograf for 18 1/2 days. Labs came back... PERFECT!!!

Infact, they haven't budged a bit!

So Aiden's transplant coordinator emailed me this week and asked, "are you comfortable with going 2 weeks till next lab?" I replied, "Hmmmm... maybe." So I am gonna give it a shot. Talk about "Believing" in a miracle!

So... of course I don't expect Aiden to just suddenly never have a hive again. Nor do I expect the sweat to start pouring from him when he is hot... But I have SEEN changes! Aiden has to wear sneakers to school. In florida that is uncomfortable for everyone. We live in crocs and flip flops... but for Aiden it is especially difficult because his feet get so hot and get swollen. So because of this, after school Aiden gets in my van where I have crocs waiting him and he rips off the socks and sneakers. Well.. the last two days, Aiden's socks were damp. The first time it happened, Aiden threw it at me and in disbelief said, "Do you think that is sweat?!" I touched it and was sure he must of spilled something, because for as long as I can remember he hasn't had ANY sweat enough to actually be visible or noticable to the touch. I check the other sock and then pat the bottoms of his feet.. and sure enough... they had sweated.

Holy moly!

The next day at school.. same thing. Sweaty feet.

Who knew that stinky sweaty boy feet would be something to sing Halleluia over!? Surely not me.. but we did. We sang it, me and Aiden right there in the car. Halleluia!!!!

We also saw our lovely Dr. Perfect Hair (Dr. Flores) this week. It was pretty amazing. Yet another victory that proves that lowering / and now STOPPING the prograf has worked.

Dr. Flores: "How many times has Aiden been admitted since I saw you last?"

Me: "None."

Him: "How many Er visits?"

Me: "none."

Him: "Have you used the valium? Or had any IV fluids?"

Me. "Nope"

Him: "well... Good bye then. I guess you don't need me anymore!"

We both laughed so hard! It was like we have gone through this horrible war zone together and we actually made it through the other side!! I remember the very first time I met Dr. Flores.. I might even try to scrounge up my archived post from it.. I remember EXACTLY what he said,

"Mrs. Hawk, Your son is having problems with his adrenal glands, His kidneys, his vessles holding fluids, Blood pressure, and part of his brain that help control all of this... in MY opinion there is 3 things that could be causing this.

1) Meds

2) Meds

3) Meds"

This was 3 years ago. Aiden was admitted for dehydration and the nurse noted Aiden's blood pressure was around 150/110. (yes deydration and high blood pressure are contrary) Immediatly we met the Neprhology team. I remember we didn't have any thoughts or diagnosis of dysautonomia, but Dr. Flores knew it was a bigger problem that they thought. Aiden wasn't techinically dehydrated, and his kidneys weren't techinically sick... but something was really wrong.

I remember that very day Dr. Flores said, "Aiden needs to switch from Prograf to rapamune".

It took a LOT of work from Joey, Myself, our doctors, and did I mention Myself? But it happened. And now it has been officially 24 days off prograf.

So with all that said, I guess we won't be getting labs for another week, if I can wait that long. This is like the beginning of a new life. Or maybe a reversal switch to our old one? In anycase it is good. All good.

In other non medical news, Mason had HIS first day of preschool! He really loves it, and had an easy transition to school starting.

We also had a very short lived fun free family night at the Ray's game.

Free? Because I won tickets.

Short lived? because poor Mason fell down the steps at the stadium (he is fine now)

Fun? well because of this:

( note it is just a bunch of loud cheering and screaming as the Rays' entered the field.. but notice how HILARIOUS my boys are when they "dance"...)

Oh yeah.. that is Mason doing the robot and Aiden dancin' like momma.

Have a great week folks! I will be updating with news from school later.

The thankful cab driver,

Lisa

Tuesday, August 25, 2009 8:31 PM CDT

Bless the LORD, O my soul,
And all that is within me, bless His holy name.
Bless the LORD, O my soul,
And forget none of His benefits;
Who pardons all your iniquities,
Who heals all your diseases;
Who redeems your life from the pit,
Who crowns you with lovingkindness and compassion;
Who satisfies your years with good things,
So that your youth is renewed like the eagle.

Psalm 103:1-5

Aiden was so sick physically, but look at the smile he has on his face as he watched his brother go to school for the first time. Never once did he mention anything about wishing it was him. He always said, he was just so happy for Mason. This photo was last year's "first day of school" Picture.

Here is this years....

Bless His name OH MY SOUL!

This has been a roller coaster of emotions. SO many months went by that were truely like we were walking in the valley of the Shadow of Death. I can't deny it, I can't say it isn't true because I have to share how far he has come!

But for as far as he has already come, we have so much more to go. I found out today Aiden will not need another blood draw until monday! God bless his little self, he had enough of that last time. His little heart broke and he begged to go home after they missed 3 times last draw. A little break will be nice. I am not even feeling that anxious anymore, and I know it isn't because suddenly I am calm about the whole coming off of antirejection medication-thing. It is more likely because my cup-runneth over.

Today was just wonderful for Aiden and of course terrifying for me. But I didn't cry! Not one tear. I was probably too traumatized but, whatever, I felt pretty tough. His teacher has been very cool and calm about Aiden and all of our requests, the principal and his guidance counselor have been amazing. SO far we are happy and know that each day we will gain more experience and it will be a lot less chaotic than the last.

But now it is night time, the day is done. Aiden showered up, clothes layed out for day 2 of school. He finished the fun crossword puzzle he was given, he ran into his bed, ready for tomorrow to begin. But before he went to sleep, I was sitting on the couch stroking his little arms, and Aiden asked ME this:

"Mommy... how are YOU feeling?"

"Oh Aiden, (tears start) I am.... ONLY happy."

I sat there thinking, really searching for what was on my heart. Was there any sadness? There was none.

"ONLY Happy. Happy that you can have days like this. I love you."

Aiden smiled and gave me a hug and told me HE loved ME. He knows that this was something I wanted for him. He knows we have fought for him, and he knows we have had pain and heartache over the years. Sometimes I talk with Aiden and I feel like we have such a special bond, so secretive and private that it isn't even ok to share here. But just know, if you ever had a child that you have had to hold this many times through this much trauma, you get to know each other's souls. I know his soul, and his soul is rejoicing like that Psalm I started the update with.

We are renewed, strong like Eagles wings.

Tomorrow is day 2 of school and day 9 off of all prograf. God's timing has been sort of inconvienent for me, kind of goes against that whole, "He doesn't give you more than you can handle"... well BALONEY. He gave it all to me all at once. But it is ok. It has been worth the ride. Yeah sure a few extra gray hairs and maybe I stuffed a quick chocolate bar in my mouth when I am supposed to be dieting... but we made it through.

Keep praying, keep believing. I will be updating with more photos during the week.

ONLY Happy,

Lisa

Monday, August 24, 2009 7:36 PM CDT

I just can't believe tomorrow is Aiden's first day of school. Real school. I can't believe it. I just am so thankful.

Too many years sitting on the sidelines asking "why?". Too many years I have hugged that little boy while he cried and knew it wasn't fair. I am so happy for my son. I am so happy I could just shout it from the roof tops.

There I stood today at Aiden's "meet the teacher" day and choked in all my tears. People rushed around, kids seemed excited, nervous or bored with the idea of school.. but for us it wasn't about a 'new year'.. or a "first day".. it was about a new chapter in our life.

Simply put... Aiden hasn't been healthy enough to go to school. To him, attending school means, He is healthier. Even though he had 3 needle pokes this morning and his 6th blood draw in week, he is healthier. His little spirit is soaring, and I am so thrilled and proud to be lucky enough to see this.

Aiden and I walked in to the school for the first time today. It wasn't the "first day" of school.. but we got to have him meet his teacher. Of course, we feel so overwhelmed at how outstanding everyone has been at the school already... but Aiden is none the wiser. Today it was all about the teacher. And what a teacher he has!! The principal was so precious and gave Aiden the 'cool' teacher in the school. Fun, athletic, and a man! Already a really wonderful male role model to have around. I am so happy for him!

As he walked up the steps today to have a one on one hand shake with Mr. Bowen, Aiden did his secret hand squeeze to me. I know he was so nervous and so excited at the same time. They met, and Aiden was SO shy! He barely spoke just did hand motions in the form of a light saber. Then Aiden spotted it, the apple on the class room door. There it was, it said Aiden's name. Aiden grabbed my hand, pulled me toward him and said, "MOMMY!!! THAT IS MY NAME!" I was so happy for him, but frankly also for myself.

This has been so overwhelming. As I was packing his back pack for tomorrow's First Day, I tried to figure out where to put his epi-pen. It just seems so weird to pack him with an epi-pen and leave him with a stranger. I know I will be right there, so close to him, but it feels so unnatural. I have epi-pens for everyone, but also for myself. I will be volunteering right in the same area Aiden is in. Tomorrow I will probably be right outside his class, pressed to the door listening for every noise he makes. (ok just kidding)

There will be no food near him, and the teacher has expressed his love of cleaning so I feel comfortable with that as well. I think this is part of the faith thing.. I just have to Pray that God has him in his hands.And I know he does.

Aiden will only attend for 2 hours MWF of each week. Tomorrow is an exception because it is the first day of school. Hopefully as we get into the 'grove' we will have art class scheduled, spanish class, and his lego-mindstorms club added to the schedule too. I know it will work itself out.

Today has been a big day, as well as all the school stuff, Aiden did get his labs drawn to see how well his liver is handeling the lack of prograf. I have wonderful news! Week 1: His liver stayed rock solid. No change in numbers at all.

I am off to bed, tomorrow isn't just Aiden's first day of school, but mine as well. I can't wait to get these pictures. I promise to post them here asap, so keep checking.

THANK YOU for all your prayers! Thank you for being a "BELIEVER" with us. It has meant everything.

Hug your children and remember the blessings you have,

Lisa

Thursday, August 20, 2009 12:59 AM CDT

Day 4 off of his prograf

Liver numbers were PERFECT!

Ggt 11
ALT 22
AST 18
Bili 0.1
rapamune level 4.1

(FYI- these labs are crazy good. better than mine!)

Last week ON the prograf they were higher (not this good)

I know we just have begun this journey.. that we won't have any real reassurance this will work till a month or months.. but TODAY, has been an incrediable relief. A Hope has settled in my heart helping replace this panic and fear.

I just have to admit how scary this is for us. Joey and I are basically only on email communication for this topic, because the spoken word is too hard to say/hear.(that doesn't mean we aren't talking... just means we can't talk about THIS) We are STRESSED! This has been so scary. I have broke down yesterday with all of the stress. I burst out crying, because I just had to admit how scared I was. Cheryl reminded me that having faith doesn't mean we aren't scared out of our britches, it just means that we still do it even when we ARE scared to death.

I mean, the chances are, he will reject at some level. That is so scary to me. Of course, I don't doubt this choice, I know this is a huge hope for him, and truthfully worst case scenario would be that he does reject, he has treatment and we lower the drug as low as possible and keep him on it that low.

BUT that worst case scenario does involve boo-boos and hospital visits, probably liver biopsy etc. Aiden's main diagnosis was liver disease, he was transplanted and after 2 years of complications, rejection after rejection and rejection, his liver became "rock solid"... Now here we go messing with it. I can't help but not be afraid. I think I would be nuts to not be afraid. BUT... we will persevere!

Today's lab results were an incrediable victory. I suspect we will get labs again Monday, but haven't heard yet the official word from Cinci. I think I am only comfortable with monday.

THEN there is the whole school thang. Yeah, tomorrow morning I meet his teacher and get to "summarize" what it means to be Aiden. I had a major ummm snag with this earlier in the week, and realized that I am not good at this paticular job. The problem is, I don't like to ever focus or think about all the bad with his diagnosis-es. So when the counselor asked me, "what is basically his needs/ issues." I did my usual... "he is just fine" reply. Well that is how I work. I am his mom. I have to think that way!! But the school needs to know just how sick he is. So our doctors wrote notes, calls are being made, and I have stepped aside on the whole reporting the information.

However tomorrow we will have to talk about the nitty gritty, so Joey is going with me. I'll let him handle it. I will put my best Suzy Sunshine face on and smile and nod. It will be all ok. It just is a lot to handle in one week.

I just wanted to share this amazing news! Check here frequently because I might be updating later today or tomorrow with the new plan.

I just want to add that Today Aiden had his 4th blood draw in 10 days and he hopped right in that chair, let them use the freezy-spray and NO EMLA, and told knock knock jokes and singing through the whole thing. He is so excited about all of this, that he woke up ready and asking to get his labs.

I am and will always be amazed at this child.

Love and hugs!!
The Team Momma- Lisa

Go Team Aiden!

Monday, August 17, 2009 6:12 PM CDT

So 5 days after the last blood draw, Aiden went to the lab and got another one this morning. I had a HILARIOUS story, that I will have to delay so I can give you the big news.

The labs came back, and Aiden's liver looks perfectly normal, not at all different on 5 days of 1/2 dose of prograf, so today our transplant coordinator gave me a call and said, "Wellllll.... we have a plan. The plan is kind of different since things are going so well. So let me tell you, and you let me know if you are OK with it."

Ok now let me interject. I need to say, (yes this is a dramatic pause) that they say this all the time. They always run the ideas by me. I love that! It is very different from any center or doctor or group we have worked with, they always preface and end every discussion with.... "what do YOU think? Are YOU ok with these options." I love how they do this. I don't know if they really mean it, but I love when they ask.

So.. back to the plan.

"We have decided to....

STOP Aiden's prograf completely."

What? Huh? WHOOOO HOOOOOOOOOOOOOOOOOOOOOOOOOO!!!

Oh yeah, this was NOT the 5 week weaning "plan" they gave us, instead lets just cold turkey it. Aiden has done sooo well so far with such small doses it just seems stupid to lower it miniscule levels.

I guess, with out knowing it, this morning's dose was the last time he got prograf. Funny thing that this morning's dose was his last, because when I was squirting it into his mouth with the syringe a drop fell on his shirt. That pink sticky stuff is now a dirt encrusted stain on his white Make-a-Wish T shirt. Who knew? Can this really be the last time he EVER takes prograf? In his life?

OK so maybe if I was really as full of faith as I should be (who makes these rules?) then I would just go pitch that stuff in the trash. But if you are a liver mom you know how many thousands of dollars liquid prograf suspension is and ummm.. I am just not ready for that big leap.

BUT for the festivities of the occasion, I we will revisit the photo of Aiden dumping the NASTY cellcept down the toilette...

"Oh yeah.. it's going DOWN BABY"

DOWN THE DRAIN!

Ok so imagine that.. but um, maybe a after a few lab draws lol... just to make sure.

So now what???

Well, Aiden gets another blood draw on thursday. We check what his numbers look like when he has NONE (did I just type that?) of his main immune supression.

I suspect then he will get another one on Monday and so on and so on.... He says he doesn't mind AT ALL getting these pokey boo boos because it is ALL worth it to him!!

Some friends were over when we got the phone call about the prograf from Cinci, and they got to see Aiden's raw reaction. Him jumping and screaming and flipping in the air. He has been bouncing off the walls since we have learned. You see, more than even me.. this was HIS heart's desire. HE gets to have hope! He isn't too young to be hopeful and look towards the future. He has been dreaming of ANYTHING that will make him better.

I don't know if it is a sick kid thing...but Aiden just doesn't complain. I know so many special "sick" kids that just have such a postive amazing outlook on life. Haley of course comes to mind first (and always) as well as many others. It is like they have learned a survival mode with out knowing it. If they dwell and are miserable then.. well.. they are miserable. Aiden has bad moments, cries when he needs to, but over all his cheery personality is the real thing. But, somewhere inside where he doesn't share it, he has been hoping and praying he could just be better. Just like when he gets to try some new allergy-free creation I make, he will gasp in excitement and say to me, "OHHHH I always wanted to try this...." You did? You never told me sweetie. Because it hurts to bad to always tell about all the things they want and can't have. It isn't like, he wants a new toy... he wants to be normal. He wants to just be healthy.

SO this isn't JUST my victory, Joey's Victory, or Team Aiden's Victory. This all rides on the hopes of an amazing 7 year old boy. A little boy that has tasted the life of health just a little bit and has patiently waited while others have moved forward. A 7 year old boy who never gets mad when he has to sit in hospitals, or get boo boos but instead looks on the bright side. This incrediably loyal and incrediably sweet and funny and sassy little boy has wanted this more than any of us have known.

So when I tell you that tonight's medications WON'T include prograf, FK506, or tacrolimus (pick from any name you want to call it) then just think about Aiden and all this can mean to him.

We are so happy, we are full of hope. PLEASE tell you prayer warrior friends to cover him with prayer over the next uhhhhh lifetime, but especially few weeks, because I believe if he will have a rejection we will see it in the first month.

God is so good.. we are so thankful for this day He has made. Keep praying, keep believing, I know this is it.

Love and pride,

Team Mom-
Lisa

ps/ can you believe it!!?

Friday, August 14, 2009 8:50 AM CDT

Isn't that cute?

Like how cute are those little pumpkins?

here's another.

Awww.. look at him so cute.

Oh yeah, the day him and Hannah got into the markers! Look at them so precious covered in their artwork!

Just chillin' in his room with his favorite trains. Oh this makes my heart melt!

well, currently my back yard is under the same contruction, but look at those short little legs and that sweet little chubby hand.

ok one more....

Happy 3 rd year transplant anniversary my little pumpkin.

Ok you are probably wondering if I am going somewhere with these photos. What is the theme? Well, it is simply the last time Aiden showed no signs of dysautonomia. It was the last time I can say he was his old self. It was before it all began, and he was 3 1/2 years old.

And now I want you to remember these photos:

Last Fall

last season of Fall baseball. You can see it in his eyes, he could barely walk at times.

His dream of being an engineer coming true, but superhero daddy had to carry him to it.

And even that was too much.

Lots of hospital stays

lots of surgeries and procedures

Lots of surgeries and procedures (worth saying twice)

Ok but yeah, he is still Aiden. Still my awesome boy, breaking rules and never being too sad still seeing the adventure in everything.

Oh yeah, and there was the 1 month of IV fluids. that didn't help or work, poor kid.

yeah, and the guilt trip puppy that was SOOOO cute and now is the bane of my existance. (God DOES have a sense of humor)

And then there were days like this. Too many to count, too hard to talk about. Just days where it was so hard.

Now everyone.. you have an assigment.

Look at the pictures of him at 3 1/2

Then, remember the countless hospital trips, pain, fear, and days of just being so different.

Remember it...

because they are gonna be memories of the past. No more. We are going to have a healing. We are getting a healing. I am BELIEVING in a healing.

All in the last 24 hours I spoke to his new principal of his new school, and his transplant team called to tell me to cut his prograf in half.

It is happening.

This nightmare may actually get turned into a fairytale after all.

My heart is crying a million tears of joy, and honestly so much sadness for all we have seen. I am looking ahead, and sometimes looking back just to see where we have come from.

When you circle the drain and you are spinning out out of control and you feel like there is no where but into that gutter, and no hope but going down....

God can throw you a bone.

I am so thankful for this. 1/2 the prograf... then more labs monday and more weaning soon.

This is the time we need your prayers. This is the time where I am the most emtional. Joey and I can't even talk about it because we just feel like it is too much. So c'mon prayer warriors.. Team Aiden is having big things happen.

Love to you all.. and after all those photos, all those memories, THIS is the one I want to remember the most.

Update on Monday

love Lisa

Monday, August 10, 2009 7:26 AM CDT

WHOO HOO... we started the rapamune.. and things are good!

Aiden had no reaction to the first dose, or any doses following that one. I was thrilled because that would be road block number 1 million, and frankly I was sick of road blocks.

So things are still so good. I can never really get tired of saying that. I am ANXIOUSLY (theme for the month) waiting for a date for Aiden's IEP meeting for his FIRST DAY OF SCHOOL!! I mean, this is just AMAZING!

It is sometimes hard when you have chronic illness to see how your child has either improved or deteriorated. It is like watching someone grow.. hard to see unless you look at the big picture. To you it is so gradual that you can't really see the cenimeters change. But when you look at this journey in snap shots it is just so amazing.

Aiden going to school even if it is for a few hours a few days a week is one of those awesome snap shot moments. you could have knocked the old me over with a feather if you would have told me that would happen. Of course all along "normalacy" is all we hoped for, and each step we take towards good health the more 'normal' things are.

Now, I am not trying to deny that wonderful-ness of the whole transplant but it isn't healthy to "live" in this world if you don't have to. In other words, I don't eat sleep and breath liver transplant or dyautonomia, we actually (hard to believe) have other aspects of our life. It doesn't diminish the Gift we got, the illness and pain Aiden has been through.. but as a mom, that isn't what we are supposed to think about all the time.

So.. this is BIG. Aiden can do things other kids do. He doesn't have to feel left out, or sad or missing out on stuff his friends do. Aiden can have time away from ME! He needs independance, he needs to have time with peers. He was so lonely this last year, and I am happy to see him have the chance to not be so lonely.

Then there is the whole other aspect of Aiden going to school. The uniform. Ok, it just makes it even more school-y-ish. Don't you just love that when he does go to school he will be wearing the little khaki shorts and polo shirt? Ok, so maybe this doesn't move you like it does me, but I think it is adorable that he will be all decked out looking like a school kid. Love it!

I also wanted to do a little itty bitty Mason update. He is doing good! Still in therapy and getting fitted for little orthotics again for his feet to help with balance. We are going to begin the carnatine suppliments and our pedi reccomended taking Omega 3 oils to help with neuro fat something or other. I think it can't hurt, so I am gonna be looking for that in my cooking oils.

He is still tiny as can be, and with him nearing his 4th birthday it is more obvious than even before. I still think he is adorbale as ever, but feel this inner push to trying to get him to gain and grow. But this is the way he is, and we love him in any package he was created in.

He has had some really intense workouts in therapy. P90-X doesn't stand a chance agains Mason's OT/PT. That kid is working so hard, and he makes me so proud of him. We have been working on his weakened right side, tummy muscles and his neck muscles.

So that is it for now.. labs on wednesday, then hopefull thursday we go from 1 mg twice a day of prograf to 0.75mg twice a day.

Thanks for checking in on us!

Love Lisa

Friday, July 31, 2009 8:45 AM CDT

Well the rapamune arrived!! BUT ... the kids promptly came down with fevers and vommitting. So.. now again, we wait.

I was pretty irritated that it took so long to get the rapamune to us. Then irritated that we hadn't yet begun it. But then my friend said, "see it was a good thing it took so long. If you guys would have gotten it earlier, Aiden would have been tripple supressed when he got sick with his fever. And also you wouldn't know if it was a drug reaction, or caused a problem." Good point. Way to look at the glass half full.

Me on the other hand I have a headache. Probably this virus. And now because of the headache I am feeling lower than usual.

I was laying in my bed last night thinking about how this place has become 1/2 medical updates and 1/2 "blog". Man I sure didn't intend that. I started this place because we were going through a lot of intense medical things and I was honestly sick of explaining over and over. So.. I put it here, refer people here, and then move on living a bascially medical free mindset.

But over time it developed (like by post 3) to a "blog". Because here is the deal.. it never is just medical. It never is just "here was Aiden's liver enzyme results:" because there are people that are reading that can benefit from the WRITTEN perspective of a mom living in this world. There are other liver families that read this. There are other caringbridge families. There are people newly diagnosed, wondering 'what is ok to feel?' and then there are ones who can read and help guide me through this journey. There are family and friends who don't get what I mean, but they read it and they can either 1) feel comfort to know that at least I get it out somewhere or 2)learn from the inner workings of my mind since I don't share it out loud very often.

Of course there are the critics, the ones who think I share too much or think "I wouldn't ever say that.." or think it is too sad or too emotional or too dramatic. But hopefully those people have moved on to a real blog to critique.. since this is also a real medical journey with real hearts and real love involved. I know no friend would ever do that, because that isn't true friendship. That isn't love. So that small audiance I don't think of.

So yes, I realized there is a blog effect to this. I used to get irritated when people would say, "I read your blog." But now I just understand that yeah.. it is one, in a weird way. If one person can read this and "get it" because they live it then I am happy. Cause SO YOU KNOW, it isn't so easy sharing my feelings for everyone to see. I mean, sure it is therapy in a sense, but it is difficult.

Yesterday we spent the morning/ day in the ER getting IV fluids, labs, and tests done on Aiden. All because he had a virus. My other child had the same virus, and got to sit home and get popsicles and kisses. I have cried a bucket of tears just trying to figure out how to be "ok" with how unfair it is sometimes. I am forever being positive and forever being grateful.. but sometimes I just want to explain to people that this is a dichotomy of feelings. There is also frusteration and sadness and pain in the knowledge that no matter what it will never be just a popsicle and a kiss. No matter how well rapamune works and how healthy we get, it will always be a tad different.

Don't take away my thunder by telling me to be thankful. Just understand I am human and I cry and I feel sad and I even am selfish and pissed that it ever happened in the first place. It doesn't make me less of a mom, less of a friend, less of a christian.

I just felt bad holding Aiden down yesterday, watching him cry. I felt so bad. I just can't help but wish he was born healthy.

I often think at times like this when I am confused and confusing other people around me. I think of this paticular verse:

A cord of three strands is not quickly broken.

"Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." Ecl 4:9-12

No matter what there will always be someone who understands exactly what this feels like. Joey, thanks for being my partner. I love you. Thanks for swooping in, cleaning the house as best as you could while Aiden and I were in the ER. Thanks for knowing what this feels like, because of you.. I never ever feel alone.

SO, those are my thoughts better or worse, today was a "blog-day" hopefully next entry will be a medical update telling you how excited we are that Aiden began the rapamune.

Love

Lisa

ps/ don't forget to tell me who the 400,000 visitor is :-)

Thursday, July 23, 2009 5:46 PM CDT

I was just checkin' to see if ya'll were paying attention. Just kidding. I have a very very good excuse for my absence: I went out of town and then have been very busy jumping through hoops. You know, the hoops we have to jump in ANY time we want to do something for Aiden. The proverbial medical hoop. I am sick of jumping through them.. but they keep getting in my way. And nothing is gonna stop this momma from getting her child better. Like.. better for good.

Ok. So, basically if you can believe it, I wanted by now to update with "He has been on Rapamune for 2 weeks!!" but instead I am updating with.. "Umm we haven't gotten it yet?"

Yep, that is all true. It SEEMS.... Rapamune liquid can cause pretty ugly oral mouth sores and ulcers, so the doctors strongly prefer it in a pill form. (which can still cause ulcers just not so much as liquid).. so when I called our team I asked the big question: "What is IN the tablet beside rapaume?" Come to find lactose is. Yep.. the same sugar that is in milk. So.. now I have to find out by calling pharmaceutical reps, and our own pharmacist if it is just the lactose and if the protien was "washed" off of it.

So.. you can imagine this all happens on fridays.. which make wasted days till mondays. Then when Mondays hit, people DARE to choose those days (and subsiquent ones) as "vacations". COME ON PEOPLE! THERE IS NO TIME FOR VACATIONS! I have chewed my nails to numbs. I have twirled my hair and bit my lip till I can't take it anymore. I need you to mail me this drug. (yes dramatic is my middle name)

SO I finally hear from them that the lactose is indeed scrubbed at a molecular level of any milk protien BUT they want him IN a hospital for his first dose. I then say... "Umm that is ridiculous.. how about in the Pediatrician's office?" They say, "have her call me." OK are you following this? So I call pedi and yes.. SHE is out of town. Geesh.

Finally, now that you all have jumped through the hoops WITH me... The doctors speak and they agree on the notion we will take the first pill in the pediatrician's office. The final hoop? Getting the pill.

I truely hope it was mailed. I truely hope as we approach yet ANOTHER Friday, that we don't have to wait for next week. I am getting really sick of waiting. I mean I have techincally waited 4 years, wasn't that enough? The wait has cause me great stress! I have been forced to read my last update over and over again. Trying to make myself believe in this. Thankfully I do.

I was telling my friend today, "My love for Aiden outweighs my fear for him."

My LOVE (wanting what is truely best for him) outweighs my FEAR (afraid it won't work or he will reject) for him.

It is really probably what ALL mom's feel. The first days of school, when we take them to the doctors, when we let them ride that first time with out training wheels. It is all a tad scary.. but if we didn't do it, then we wouldn't be good parents. We would be selfish parents. So in my world, it isn't wheels off of bikes, it is immunesupression medications. What-ever. You say TOEmato I say tomATo.

I am just now excited. Here is the "PLAN".

Week 1: take regular amount of prograf and take rappamune
draw blood levels.

Week two: Reduce Prograf by 25stay on rapamune
draw blood levels

Week three: Reduce prograf another 25tay on rapamune
draw blood levels

Week four: Reduce prograf by another 25djust rapamune levels
draw blood levels

Week Five: reduce Prograf by the final 25 djust rapamune levels
draw blood

Week six: OFF OF PROGRAF. ONLY ON RAPAMUNE.

I love a plan. I just am so happy that one is set in place. I am less scared today, this past few days I feel really energized and reassured this is the best thing for him. I feel hopeful and excited.

Aiden has been feeling good. Blood pressures rising some, but that isn't unexpected with the double dose of florinef and the heat. He is having a very difficult time outside, I feel terrible that this doesn't seem to at all get better. I am hoping when the prograf is gone he will have some ability to cool himself and sweat. I don't know why that is one thing I doubt the most. Who knows.

In other exciting news:

This page is almost at 400,000 HITS! We are less than 3,000 hits away.. So I have a contest. Who ever gets the 400,000 number wins a fabulous prize!! A hand signed by Aiden and Mason... Snip Snails and Puppy Tails COOKBOOK!!

Rules are: You can't cheat! Don't click it over and over and over. And if you can take a picture of it and email it that is a bonus. If not.. I understand.

Have fun!! And thank you for caring about our boy like you do. And thank you so much for remembering that we have a mission. That mission is a cure.

Love and hugs and excitement!

Lisa

Tuesday, June 30, 2009 9:00 AM CDT

I don't fully know why I have been so silent here on Aiden's page. It isn't like me, and especially since I have so many thoughts and updates swirling in my head. I think sometimes you just feel like a break is in order. Of course after 6 hours in a van with my two boys, and two dogs and no grown up to talk to...I just about wrote this whole update in my head.

I am at a crossroads right now and its my fault really. I have taught you all that I am a skeptic. Or maybe a cynic. I have been angry at the system. I have been mad at the way this whole "greater plan" thing sort of plays out. BUt I am here to change my tune. I take it back. I want a second chance on blind naivety. I want to be innocent in my thoughts and I want you all to believe along side me.

Over the years I have hammered it into my head that even if we ASK for it, we may not receive. That is true. I didn't invent that. It is absolutly true. There was no deal struck with me and God, there was no reason for me to think.. if I pray extra hard it will all go away. Because as a woman of fatih... I have FAITH that sometimes His answer is no.

I have over the last 7 years 2 months grown deeply in my understanding of the words "miracle" and "answered prayer". Miracles can happen in the most subtle moments. Maybe the miracle we are looking for already happened, but the evidence has yet to play out. Answered prayer doesn't mean you can stand at that convienent store check out.. pray "oh god let me win the lottery today" and bam.. you are a winner. Sometimes it is in the silence of God that our prayers are answered, sometimes it is in the worst way our prayers are truely answered.

I have heard mothers say, "My child is doing so well.. It is the 'power of prayer'... " and then hear other mothers who are grieving the loss of their child and saying, "God answered our prayer.. they have had the ULTIMATE healing." Prayer is a difficult thing. Often times I think of prayer as an obediance to God. Sometimes I see prayer as a deep friendship with God, a time to talk about the inner most workings of your heart. But over the last years I have obviously realized that HIS WILL isn't always MY will. But it will be revealed one day (maybe not until I am in Heaven) as the Perfect Will.

How often do we pray that Lord's Prayer and focus on the "Your will be done..." part? Honestly I am actually lying when I say that part somedays. Technically I want MY will done. I techinically wanted to have the day when Aiden's doctors told me he was sick.. POOF be gone and magically never had happened. But it doesn't work like that.

So here it is. A messy confusing road to an answered prayer. This week, Aiden will be going on a trial off prograf and onto another drug called Rapamune. People... THAT is an answered prayer. Yes a prayer that I requested 4 years ago. A prayer that I wasn't even sure I wanted! But it was answered. How it was answered was just in the craziest way. And what is to come next requires me to stop being the cynic and start being faithful. Instead of guarding my heart and saying, "Yeah this won't work.. infact he will reject and it will be a mess"... I am going out on a limb. I am changing my attitude. And I want you to change yours too with me. WE ARE BELIEVING that this child WILL have healing.

The way that God has worked this whole thing out for us.. Aiden coming off prograf, was really part of the miracle that would allow me to believe that this was going to work.

Over 4 years ago, Aiden began to become deathly allergic to just about everything. He would have anaphylaxis, one after he next. It was an all consuming hell. I would be sitting there, hear a cough and go running. My mind whirling, is he breathing? Is he going to live? 21 times my child went into cardiovascular shut down from breathing, touching, and heck just about looking at food or latex. One day he would be eating the food, the next day it would be the thing that would be threatening to take him from us. Life in the Allergic "storm" (coined by top immunolgist who just couldn't understand) was the most terrifying. HIs old doctors recogonized that they were possibly going to lose their patient because there was a chance the prograf was causing this insane immune reaction to everything. They went out on a limb and removed Aiden from Prograf. Aiden was 2 years and 10 months old. On Aiden's 3rd Birthday we recieved a call from his transplant team... Aiden was in a severe rejection. It was so frightening. Words like, "You don't know how close we were to losing the graft (liver)" were on everyone's lips. After 5 rounds of intense IV solumedorl and 2 weeks of being in the hospital, Aiden's liver began to recover. ALl hopes off prograf were dashed. We all felt strongly, even back at our old center, that this medication was saving him and killing him at the same time. After that rejection Aiden was run on extreemly high levels of prograf. Massive levles of steriods kept the hives at bay but the anaphylaxies were going strong. When Aiden turned 3 1/2 Dysautonomia came to be a part of our lives. Except no one knew what it was. You know the story, we seeked, we prayed, we begged and even left on search for a team that had the insight to all this mystery issues. I had all this litature about prograf and allergies. When we met Cincy I came armed. On our first visit they immediatly began to lower the prograf but said because of the severity of his previous rejection they would not likely ever take him off his prograf. The attention turned to the dysautonomia and just giving it a name. What was wrong with Aiden? Every specialist we saw was horrified at the body parts that just weren't working. Kidneys, adrenal glands, heart, intestinal, and his brain. It came to be known Aiden had a neurologic issue that was effecting his entire body. We were in and out of hospitals and then it just got worse. The quality of life was terrible. I had fouight against him getting a wheelchair for stores and threw him in strollers he was too heavy for. As time went by they lowered and lowered the prograf levels. Then last year the conversaton with our transplant team happened.

"We can not find proof to this. We have no way of showing litature that this has ever happened before, but we have a hunch that the prograf is causing a form of neurotoxicity in Aiden. He just can't tollerate the prograf. We would like to wean him by next year."

OK.. NOT the allergies. NOT the anaphylxis.... but dysautonomia? Joey and I cried just knowing GOD must have his hand in this mess. I usually say, "If I can't wrap my mind around it.. then it is God." I leave it at that.

SO lets talk this year. Aiden has been admitted ONE tme. He is on basically the lowest amount of prograf you can be on. His last levels was 1.7 for liver moms. And now.. finally with all the other med trials completed for his dysautonomia, with all the other treatments on hold... it is time to try a new drug called rapamune.

EEEEEEEEKKKKS!!!!!!

This is where my logical brain begins to try to protect myself. The cynic doesn't want to get hurt. The worrier in me wants to cover my eyes. He could reject his liver. We could be back at square one. It could absolutly not make ONE BIT of difference in his dysautomia or his eosinphillic disease or his allergies. It could just SUCK.

or....

He can be cured.

He could be cured. He COULD have no more dysautonomia. He could have NO more allergies. He could have none of it.

God is SO good to have made this THEIR idea. Not mine. It wasn't from the years ago I brought in my wrinkled tear stained articles in. It wasn't because I begged or screamed. THEY decided this. THEY told me. And it helps with any guilt I feel.

What would YOU do? If someone said to you, we have a CHANCE FOR YOUR CHILD to be as close to normal as you have ever known. For him to go to school. To Vacation Bible Schools, to the Movies, to resturants, to have a life that isn't always, "Be careful.. NO!" What would you do if your child couldn't sweat? If he couldn't cool his body or heat it up when he was cold? If you knew your child's heart rate every single night slipped into frightening low levels, that he needed a pace maker because his brain didn't tell his heart to beat normal. But he was too small for the kind he needed. What would you do if your child had to have heart monitors under his skin, ports in his chest, and an IV pole in his bedroom? What would you do when your child leaves a friends house, and proceeds to ask you, "What is in yogurt that I can't have?" or "Can I ever have a water balloon fight?" No. It is all latex baby.

DOn't ever look at Aiden see him running and playing and smiling and laughing and ever ever think, "well he just handles it all amazingly well." NO! NO NO NO. He shouldn't have to handle his mortality!! Do your children? Do they live with this burden?

Would you listen to the doctors that tell you, "It is worth the chance." And tell them NO? Well Joey and I wouldn't. We wouldn't at all.

And for that. Joey and I are choosing to believe this will work. Believe along side me. Please don't come to me any with your worries about this. If you can't believe, please don't share. DOn't dash any hopes we have before we get a chance to have them.

If hopes are the ONLY thing we get... if this fails miserably and he has a rejection, then let us AT LEAST have this hope.

I taught ya'll this cynical behaivor for Aiden. I know that. It is my fault. I have been protecting myself and my heart to think, it can never happen. Then IF he is better than wow.. a bonus. But that isn't what God wants from me!! I am sorry for doing that. I am sorry for letting the pain of the years jade me.

Now.. today, one day before I learn of how we will add the Rappamune and take away the prograf, I am choosing to believe by Christmas my child won't be sleeping in a hospital bed. I am choosing to dream he won't go trick or treating afraid of everything handed to him. I am choosing to believe he will be carrying a book bag to school and sitting in a class with other children.

Most mom's get to live that stuff.. I just want to believe it will happen to us.

So today... I am excited. My husband wrote me a long letter one morning.. he told me how he felt like at the top of a mountain. How the world seems so clear and how everything can go as we dreamed. We are choosing to have faith. I KNOW he will be cured. He may even have some bumps.. but if it took 4 years to answer the prayer to get him off prograf, I am willing to accept that this journey is nothing like I expected.

Exciting stuff will be happening. I am doing the very best I know how to do. I hope you are along side us and here to be that cushion we need.

BELIEVING, (maybe for the first time in a long time)

Lisa
Team Mom to the Hero of the game, Aiden.

Wednesday, June 10, 2009 12:30 AM CDT

It all started with a small confession from Aiden.

"You know Mommy, I umm.. don't love Thomas the Tank Engine.... ummm.. like I used to."

GASP.

And in a moment I saw the years flash in my mind's eye. I mean he is still the same child isn't he? His thick little fingers grasping the all time favorite Toby and Henrietta, gleefully cheering ... "CHOO CHOOOO .. down the tracks we go!"

He is only a smidge taller than he was when he was 3 and 4, but now instead of endlessly creating track designs on his train table, he sits and reads Lego booklets and creates detailed ships, destroyers, and whatever else they make in the Star Wars set. None of which I, at 33 years old, can even begin to duplicate.

So when my friends who are my senior and who have traveled down this very rushed road of parenting, have said to me, "Enjoy it while it lasts, because it goes so fast," I just didn't know they ment this fast. At only 7 I rarely see that cherub sweet face of curiousity. Now I see and boy who is inquisitive and determined. The difference being of course the things that delight him. Now, instead of a "peep peep" or "toot toot" Aiden is using 'THAT' noise. You know that one that boys use? When they are swishing and fighting or shooting? Something like...

PuuShhhuuuushhh!

Or

FoooooF!!!

or

Pew Pew Pew Pew!!

Infact this "noise" is not only being showered around my home by Aiden, but Mason and yes even JOEY have partaken. It is like the "call of the boy." When Joey gets on the floor and all of their Star Wars "guys" are having a battle or a re-inactment of some dasterdly destruction all I can here is "PEW PEW PEW" from the shooters and "PfSUUUSHHHH" from my little Mason.

HIM TOO????

Sigh, it is the legacy of the second son. He skips so much of the precious little precious. Things like Puppies that sing, and ABC toys. No matter how much I use my most playful voice, I can't get Mason to even look this way anymore. Ewoks and Chewbaka are wayyy cooler!

I know it seems dramatic that the guarded words of Aiden, ("I don't love Thomas..umm.. like i used to..") would put me in a place of this type of reflection, but it has. I am so thankful I recorded so much of both of their toddler years because I get to look back and remember some of the sweet little games we played, I love thinking of rocking my babies, holding them on my hip for most of the day, or laying on blankets, holding rattles over thier heads.

But... this is wonderful too. In it's own amazing way. A friendship has begun... the eyes of my boys have began to shift from me to their father. And what a blessing it is to know Joey is where they will have their eyes fixed for decades to come.

Thomas and Friends, I might not be ready to put all of you away in the attic yet... but soon, we will be saying good bye. You have served us well and you will always remind me of the times when Aiden was SO so sick and you would bring him joy.

Just like Thomas, I dare to think there is another phase in our lives that might shifting and moving in a new direction.

Could Aiden be getting better?

Could lowering the prograf really have been "the trick"? Is there a healing happening? Will he have a chance to live a long normal life?

I do know though that for the first time in in 7 years, Joey and I are dreaming again. We are making plans. We are sitting back, cuddling on the couch and doing what married couples do... talk about the future. It is all just as guarded as Aiden telling me about his change in heart over Thomas. Do I share these feelings here? Do I make myself vulnerable and share with you all that I am getting a "feeling".. that the sick days are becoming less and less and the healthy days are longer and longer?

He isn't perfect, he is still having so many allergic, heat, blood pressure, issues. He looses energy quickly on certian days, but everything is so much more mild. I am anxiously waiting to see what is planned for Aiden, and praying that we are still on the right path for his ultimate healing. Your prayers and thoughts and encouragment over the last 7 years has been a testimony to how something awful and tradgic can still create moments of joy and love.

Last update I talked about how Aiden was going to be on the telethon. It was wonderful! We had so much fun. Aiden did his "special move" and it was hilarious. I have managed to upload the clip to facebook but yet to figure out how to get it on this page. I am working on it.. but will post it the moment I can. I have one last idea!

In the mean time, I can't wait to show you a photo little slide show we made from the event. It was wonderful and it just was nice to have something positive happen after all the bad. After 7 years of being a patient of All Kids it was due time to see that spunky little grin getting a little face time for something good. We have been in papers and on the news for all the tragedy but, it was a nice change to do it just because.

I will keep working on the video, in the meantime.. I promise to update more frequently! Sorry for the lull in updates... but no news has been good news.

In a Galaxy Far far away,
Lisa
The Team mom

Thursday, May 28, 2009 4:31 PM CDT

Update today will begin from and update from the past... One year ago I wrote this update.. bare with me. If you were reading this page then, you might remember. But please take a moment to read

"Ghosts of Update's Past"

-----------------------------------------------------------

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

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

May 28th 2009:

Yesterday afternoon.. I recieved a call from a nice woman named Ann. PR at All children's hospital. They have asked Aiden be a part of the 2009 All Children's Telethon.

Yes.

7 years ago my beautiful baby was only 6 weeks old... and being carried away into a 8 hour surgery and ultimatly diagnosing him with Biliary Atresia. It was telethon season, then. Now at 7... we are enjoying.. rejoicing... shouting with joy... at the second healthiest 'season' of his entire life, again in telethon season.

An amazing little girl, who has been on the telethon, raised money for All Kids, and is a WARRIOR against cancer. (which she has and will counquer!) nominated Aiden to be on the telethon. Mary. Thankyou. We think you are so special.

GULP.

I may joke about the fact I will have to do nothing but drink water for 3 days, and wear Spanx and a turtleneck to cover my fat.. but what is going on in my mind, well it is just a whole circle of thoughts.

I just am now, going to say, I am thankful, my son is able today to show his spunky spirit on this telethon. I WILL do my very best to do a shout out for organ donation in the name of my best friend's daughter Haley, who died not getting her chance. I hope to get asked the question, "How do you cope for 7 years?" and say, "THROUGH CHRIST WHO STRENGTHENS ME!" (and a boat load of love from you) and I hope to take a moment and look at some mom whose child is just diagnosed this week, as we were, and say... Hang in there. I understand, and I am so sorry.

If you are local, We will be taping in the BRAND NEW hospital, (I think the only kiddo in it!) around 6:00 PM Saturday. They will probably show it later around 9:30 and after.

Look for the little special hand signal Aiden has planned to give all his special friends. I can't wait.

I love you Aiden, it was only a moment ago when I held you as a newborn, watching the first telethon, praying to understand what it all ment. I am so proud to be your mommy.

Lisa
GO TEAM AIDEN!!

Tuesday, May 19, 2009 1:13 PM CDT

Summer is here, school is almost out, and I am just in awe at how good things have been.

And just when I begin to think that we are invinsible..

Aiden vs the kiddie pool.

Some of the welts/ hives that exploded all over Aiden after laying in the kiddie pool.

Aiden thought his hives made him the "Hive-en-ator" pretty cool because the hives were like hills. Yeah.. cool. NOT

But if that wasn't enough.. Aiden vs the sleep diaper was even uglier.

Another day last week we went to eat out at one of the only 2 places Aiden has eaten safetly at, and wouldn't you know.. a few bites into it, he begins to vommit.

This is what is called a "flare". A flare in the immune system. So now we have bumped the steriods and pray the flare goes away.

The allergies aren't gone. He simply TOUCHED a kiddy pool that may or may not have latex in it, and his hand swelled so badly that it bruised. The hives didn't go away for 8 hours. Just from touching something.

So that leads me to the insane talk of Aiden attending school. Drama over IEP's (individual education plan) and meetings with school boards, doctors and teachers. What is wrong with me? Have I forgotten the trauma? The struggles? All of the terrible things I have seen? Why would I leave my secure little bubble and forge out into a world that is uncertian? Take the bubble and pop it, just when I perfected it's shape and size?

Why?

Well I have an answer.

Because I love him.

Because I love him so much!

Because I want for him.
I am jealous FOR him.
I have desire for him.
I have HOPE for him.

Because it is the right thing for my child.

As of now the plan is for him to attend school for a few hours 2-3 days a week. Possibly for a favorite subject. Our doctors do not want him there for outside play, and lunch room time. His doctors aren't sure how his body will even do sitting in a chair with his blood pressure issues, but they are like me... full of hopes for him.

It isn't for the acedemics. We will still have the wonderful (and I mean WONDERFUL) homebound teachers come to our home to help tutor him. I will continue to home teach and school in areas I feel led. BUT he will sit, with other children. He will pass Valentines on Valentines day. He will laugh in hallways and draw special drawings for his mommy. He will learn lessons I simply can not teach him.

He will have back some of that innocence his disease stole from him.

Childhood.

I know that God has placed this on our hearts. I WILL NOT fear. I will not let my mind fill with the past traumas. I will armour my self with truth, and patience. I have been to battle before for my child, and if neccesary, I will go to battle once more.

I am writing this update, not as an update but more as a plan. A reminder to myself when I am shaken with fear for him, that THIS will be ok.

www.caringbridge.org/fl/aiden

isn't just a place where I write for readers to know things, sometimes this fills the purpose of a journal. A place I can look back on, learn from and use in the future.

So for me.. me and my husband I want to say: This will not be easy... but it will be ok. Aiden deserves this joy, we will be ok, and then the Glory will be all God's.

Only 2 hours after the above hives... I took Aiden and Mason to my parent's pool. Our spirits were not crushed, and we remained in the same joy had as the day began. Aiden created a "show" for us. I was in charge of the camera, Mason was in charge of singing, and Aiden.. well... it was "his show."

With hives still red and hurting on his chest, this video was made.

My son is full of Grace in the Lord. I want to be like him, I want to laugh in my pain, I want to look ahead and not backwards. I want to remain hopeful and faithful, I want to be child like in my faith.

Thankful and hopeful for our future
Lisa

"Three times I BEGGED the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." ... For when you are weak, then I am strong." 2 Corinthians 12:8-10

Monday, May 11, 2009 6:06 AM CDT

My shining Mother's day.

I thought I couldn't top last years mother's day. We had our crazy Yard sale/ fundraiser for Aiden, I didn't sleep through the night, and at 5:00 AM we left for the airport to take Aiden to Ohio for yet another procedure. Mother's day last year was spent on a very turbulant flight with not enough coctails in the world to calm me. My birthday card was litterally drawn on the airplane barf bag. "Happy Mom's Day!" written on the front of it. And the afternoon spent collapsed in a hotel bed unable to sleep because my child was fasting for a procedure, begging for food.

Ahhhhh MOther's days of the past. But this mother's day well.. I woke up to a phone call from Poison control "checking in" on Aiden. Making sure he was ok.

Yup folks, today's edition on Aiden's update isn't a big drawn out speech of how Joey and I sacrafised and saved our innocent child's life.. instead, It is a more "realistic" version of motherhood.

OK. I am not good at math.

I am really really Not good at math when I am cooking dinner.

I am really really really not good at math when my inlaws are in town, kids are loud and playing, husbands are interupting, Dog's begging for food, and 7 year olds are presenting with hives/ welts all over their backs.

(did I give my self enough excuses?)

So when I pull out a new bottle of Benedryl I choose not to use the handy dandy syringe and use that little plastic measuring cup it comes with. But I am not good at math. (see above for excuses) And I give him two little cups full, and get back to making my turkey spinach calzones. I finish dinner, we all sit down to eat and I pour the boys some fresh squeezed lemonaide. Aiden takes one sip and says, "Mommy your lemonaide makes me so tired." I look at him and his eyes are half open and he is begging to lay down.

I remember the benedryl and RUN to the kitchen.. I give Joey the bottle and say, "do the math!" It seems I was supposed to give two TEASPOONS not two CUPS of the benedryl. (Why didn't I just use a syringe??!! I give him benedryl every day! argh)

I get the number for poison control and I go through the process of telling them about my "mishap". As the woman and I are speaking I am trying to use my "I am not good at math" excuse to raise a chuckle or any type of sympathetic responce.. but nope. Nada. She was NOT amused.

It seems I have Aiden 100 ml's of benedryl. Yes. You read that right. 100. it was 8 teaspoons. Yes ok.. I know.. I must be really really bad at math for that little conversion. The Poison control "woman" (she sounded more like military police) says to me, "Well this is very border line toxic. Is he having a seizure, shakes or jerking?"

DUH no! If he was, I would call 911. But he was just groggy. She then explains to me that it was borderline and that it would probably be ok... she then asks the question that changed everything. "Does he have any other medical issues?"

Oh please? Seriously? For a brief moment I thought of saying No, because I knew where THIS was leading. But for his safety I said, "Ummm welllll.... he does.. umm... sort of... have a history... of.. liver trannmfjdfkjdfkjad ." Liver what? "Liver transplant." enough said. I didn't even have to tell her about his heart and his weird other issues with blood pressure and kidneys and hormones and blood vessles.. I just mumbled Liver transplant and she says, "He needs to go in NOW!!"

Ahhhhhhhhhhhhhhh

Let the guilt kick in. ER on a friday night, for no reason other than this. Are you kidding me? He still wasn't asleep, and I wasn't too suprised, benedryl doesn't really effect him anymore because he gets it so often. We arrive in the ER and see some old nurse friends and felt at least thankful for that.

OK yes people I am human. It is official. I feel like I am "coming out of the closet" with this. So many people say all the time, "how do you do it?" or "you are amazing." and I want to say, "Uhhh if you only knew!" So now I get to show you all just how real I am.

Aiden does fine at the ER, the doctor said, if an adult was to get this much they would be asleep.. he looks over at Aiden as he plays his video games. He explains how his body has become so used to benedryl that he needs so much more to have it effect him. I guess all those hives over the years actually helped him in this situation.

The watch his heart rate, and blood pressure and of course it was better than it has ever been. Go figure. And after a few hours we get to go home.

I didn't exactly sleep well that night but as Saturday came we were able to make a few tiny jokes here and there to lighten the mood, and by Sunday morning, mother's day.. I had forgotten all about my mistake. That was until my phone rang. "Hi this is poison control.... is the patient alert?"

Gee Happy Mother's day to you. Yes. He is alert.. if he wasn't alert and it was 36 hours later wouldn't you think I would call someone? But yes.. He is alert.. thank you for the added guilt trip and reminder of my error. Have a great day!

So I got an amazing gift for mother's day. I was let off the hook. I was able to just be a big fat screw up for a day, and since Aiden is ok and fine and no worse for the wear, (and one video game richer) I actually have enjoyed being off the "your so amazing" hook for a while.

I am not amazing.. I am a person. A real person like you! When people say to me, "I could never do all you have done." I want to scream. I don't have some magic spell that makes me better. I am just a regular mom. One who has a short temper sometimes, one that doesn't play on the floor because I am lazy, one that even takes moments for granted even. I am just a human, and it is ok! I shouldn't be raised to some standard of super human or be told I am capable of more than other's because I have been handed more than others.

I like being regular.. I like being a tiny bit forgetful and flakey. It is hard to be perfect all the time. SO for mother's day, a call from poison control was not really "worth it"... but I can still take the lesson learned. The lesson is.

Don't let Lisa do math.

I hope you all had a great Mother's Day weekend! I know I did inspite of it all. I love my boys so much! Being a mother has been the best thing in my life. I love it so much. I feel so blessed at our good health lately.

Medically an update:

We are 1/2 way through our vasopressin trial. I am pretty sure it has not worked. He has had no effect from it at all. Still dumping tons of fluid at night. We will see what they will do next. Also we are supposed to be going to Ohio in the next month or so, I am still trying to "get out" of that. We will see! otherwise Aiden is the best he has been in 4 years. YAY!! We are so thankful.

Have a great week! And please don't feel the need to try to make me feel better in the guestbook.. I don't feel bad anymore, I just thought you all could relate to this side of me more.:D Afterall that is what Motherhood is all about, Just learning as we go!

Love and hugs

Team Mom!
Lisa

Monday, May 4, 2009 10:18 AM CDT

The Rant and the Rave

It isn't often I title my updates, but figured I would today so you were prepared for the beginning part of this update.

Swine flu.

OK. So. I have been measuring my words, keeping quiet, but now I will just share my innner most feelings about this epidemic and just let you be the judge of my rant/ feelings.

I am the mom of an immune-supressed child. People have been asking me non stop "are you freaking out about the swine flu?" And I keep saying. "NO," and am frankly shocked at how some people are behaving. NOTE this EXCLUDES the high risk community like fellow transplant patients.. this is for the generic population.

35,000 people died last year of the regular flu. 13,000 people died this year from the flu (As of April). Still I go to the park and see green snot pouring from noses, rashes on cheeks, and deep juicy coughs echoing the hallways of schools.

Aiden has been admitted so many times for pneumonia, fifths disease and nearly lost his liver from a virus called CMV... in lamens terms the common cold.

I am a tad miffed that now.. people watch the news see the masks, and freak out. Why? Because THEY are afraid. They want to protect their families. Well, here is a thought .. stop being so darn selfish the rest of the year. (note- I am not speaking to my readers I am just saying in general)

I have been at the park and had a mom say to me, "My child has been home from school for 3 days sick with ________ and we couldn't take it anymore so I took him to the park to run off the energy." HELLLO ! You took him to the park to expose us!

How many times have I seen kids covered in rashes and the parent said, "Ohhh it is allergic." or "My doctor said it isn't contagious anymore."

DOES YOUR DOCTOR KNOW YOU HAVE IMMUNE SUPRESSED FRIENDS?

Am I freaking out about the swine flu? No. Just like I am not freaking out about any of it. If I freaked out about things 7 years after a transplant.. umm I would be nuts. Aiden would have no life. And isnt' that the point in all of this? Get the second chance.. then live it. But the point is, I have a RIGHT to freak out. It REALY IS DANGEROUS to Aiden. I am just saying... don't run to your nearest pharmacy to buy a mask for the very rare and mild swine flu because the media told you to. How about stay home from school the day you are sick and actually not spread it because you are "cooped up." or if you have a fever and runny nose.. don't go to work that day, and surely don't go to the grocery store. Just stay home.

All the "new" rules of handwashing and coughing into sleaves.. all those rules should apply ALL THE TIME. Dont' panic.. just LEARN from this. Think of it in a Christ-like mindset.. don't do unto others you wouldn't want done to you.

I admit I have some pretty awesome friends. They don't do any of the above. But that isn't to say that we haven't had our share of grocery store exposures. TWO times Aiden was exposed and given PAINFUL immune injections because of chicken pox exposures in stores. STAY HOME.

And if you choose to not vaccinate you have even more responsiblity. (NO I DID NOT SAY PEOPLE WHO CHOOSE TO NOT VACCINATE ARE IRRESPONSIBLE- a lot of my homeschool friend's who I adore don't vaccinate) People like my child can NOT recieve vaccines. He can NOT have a live virus vaccine. So if you choose this lifestyle you have the MOST responsibility to my child and other's who CAN NOT protect themselves. You must stay home and not bring your children to church/ Sunday School if they show sign of disease. You could be endangering my child more than you will ever know.

Now.. with that said.. I realize the swine flu isn't nothing. I know that it is the flu.. I am sorry for anyone effected by it, and hope none of us are effected by it. The reality is, Everyday is a pandemic for us transplant moms. We are always at risk. Every day we do our precautions of hand washing and sneezing into arms. I think it is time for America to follow suit, it isn't THAT difficult to use a little hand sanitizer.

Now end of rant.

Onto the rave.

After years of Aiden suffering from severe life threatening peanut allergy... Aiden has been showing lowered and lowered levels of the allergy in his blood as his prograf is lowered. As of this year Aiden has played baseball for a league that has peanuts everywhere. He steps in them (if unavoidable) and has even sat on a few shells. In the past Aiden would have needed to be epipenned. NOW.. Aiden doesn't even get a hive. His last level drawn for this allergy showed almost gone. I couldn't believe it. This doesn't mean we will have it in our home, or feed it to him.. it just means, he is safer if exposed to the shells.

So.

Tonight.

Aiden...

WILL BE GOING TO SEE HIS VERY FIRST EVER PROFESSIONAL BASEBALL GAME!!!

Joey is taking Aiden for a father son, day/night to see the RAY's play!! I am so excited for Aiden. I am so shocked that only 4 years ago Aiden stopped breathing from being around a peanut shell.. and now he tramples through it like it is nothing. All those hopes and dreams with Cincinnati lowering Aiden's Prograf and it helping these awful allergies.. is coming true!!

I am asking for prayer of course, since it is all new to him. Joey is leaving to go to the game 3 hours early. They will be sitting totally by themselves, up in the top deck. He will have clorox wipes and a towel to sit on.. but he will be at the game.

He won't be quiet about it. He has his glove by the front door, his bionuculars and his rays shirt. He has never been in anykind of place like this. The music, the cheers, the kids just being normal kids... I can't wait to hear how much he loves it. I am praying he has no problems. His doctors have ok'ed the baseball day and we are so excited. I am popping popcorn and making a baggie of treats for him. I want him to just be like every other regular kiddo there.

So with the previous rant done lets remember the rave.. God is so good! I am so thankful for the miracle we have seen this year in 2009. We believe in his healing.. we will not ever let any diagnosis or medication or doctor define his future or his odds. We are so proud of you Aiden! Go Team Rays and Go Team Aiden!

Love Lisa

vasopressin update: we completed week 1 of the trial and it hasn't changed any of his symptoms. (except he does seem a tiny bit cuter than normal hee hee)

Wednesday, April 29, 2009 9:25 AM CDT

So Aiden is now on day 3 (ended day 2) of his 30 day Vasopressin trial. Vasopressin is an anti-diaretic hormone (ADH)that our brain produces to make us not lose too much fluid. Aiden is taking it at night to help him not lose so much fluid while he sleeps. At 7 years old he has never had a dry night of sleep, but more than just urine he is losing incrediable amount of fluid. Soaking through two diapers and bed pads. It is so sad because now he is really becoming self consious about it. Joey overheard him say to his cousin this past weekend, "Cameron let me show you something I have never told anyone. Do you know I am wearing a diaper under my shorts? I can't help it, my medicine makes me pee."

SIGH

I was glad i wasn't able to hear that because I would probably go to the "rescue" and I think he didn't need that, he just wanted to tell someone his secret. Joey said it broke his heart. I hate it for Aiden. He has problems holding his bowles and urine, because it is all the "autonomic" aspects of our body. Sure we can "hold it" but when your gut and your bladder tell you to release when you are alseep and not able to stop it.. it just releases.

The amount of fluid Aiden takes in daily is the only thing that keeps him functioning. We tried a few months ago running IV fluids every single night for over a month while he slept, but you all remember he still woke deeply dehydrated and was rushed to the hospital for a crisis.

Aiden was given large doses of florinef (ADH)that our Adrenal gland produces, just to help his vessles stop leaking out the critical fluid from his veins. This has really changed his life. We went from being addmitted in full crisis ever other week, to rarely a crisis but instead just difficult days at home. He has yet to really produce any sweat. So by adding yet a SECOND anti-diaretic hormone to the mix, you would think this kid will never pee again.

Day two of the trial... it has done ABSOLUTLY NOTHING for him. According to the pharmacist I spoke to, it takes about 1.5 hours to kick in.. once he takes his dose it should work. Two nights in a row, Aiden woke up soaked. It had no effect.

I am not entirely suprised. I was either expecting him to have something scary awful happen, or for it to not have the typical responce. After all Aiden take these medications that are supposed to increase blood pressure and increase heart rate and just the opposite happens, his BP and heart rate bottom out dangerously low. It is the dysautonomia. Nothing automatic works right.

Now, with all that said, I am still hopeful with tweaking and adjustment and maybe some time (although the pharmacist was rather sure it would have done it's job the first night) we can find some real success with this drug.

But unfortunatly the words of Aiden's cardiologist keeps ringing in my head. "I don't think this is the MIRACLE drug you think it is going to be." DANG! How about some positive thoughts man! A little bluffing would have been nice! Now I am tainted with that and hate to have so much hope in such a small pill.

I mean really, will just one pill ever fix any of this? I don't know. I just don't know anymore. Yesterday Aiden had to do school yet again on the couch with his teacher. Trashcan/ puke bucket at his side, he moaned, used baby talk, and squirmed through the entire lesson. He has resorted to lying about all his symptoms till he is run down and can't function. I just don't know really what to do. I have reassured him that by telling me he feels bad only will make him safer so I can get the right drug for him. He is afraid of the hospital, of getting admitted. Gee I can't imagine why.

So that is that, we have the vasopressin, we have the valium for crisis, we have a plan. I hate this phase because I just feel so innactive. I want to keep plowing forward but at this time, "wait and see" is the only choice we have.

In the mean time I have soo many other deep thoughts at the moment I just don't know where to begin. So I will just let them toss about my brain for a while longer until I am sure what I feel like sharing and what i will just keep locked away.

Overall I am so happy Aiden has improved sooo much from last year. I guess if we didn't have a terrble year like last I would be able to see this year as good. It is all about perspective. I am prayerful and hopeful that we will get it right.

I just ask for prayer for Joey and myself, for wisdom in all these medical decisions we are facing. Thank you so much for taking time to read about Aiden and our family, I can't believe this journey has been 7 years I just am really amazed how God has given us the endurance and faith to keep on.. and keep laughing.

please pray for my friend Cheryl and remember for Haley who died waiting for this chance at life, PLEASE BE AN ORGAN AND TISSUE DONOR. No more children should die. It makes no sense when it is such an obvious gift to give. The gift of life.

Love and hugs
Lisa

Go Team Aiden.

Wednesday, April 22, 2009 10:46 AM CDT

The Birthday was a huge success. The "non" party was such a party. When I said Boy-fest I ment BOY-FEST! Seriously at one point I was in the corner rocking back and forth thinking of pink ponies and butterfly kisses. It was all too much for even me to handle. But thank Goodness for Joey! It seems he has never actually aged emotionally past 7 years old, so the Star wars extravaganza was right up his alley.

I made a little slide show because seriously it is just a lot of light sabers and toothless grins. So enjoy!

You might have noted that my husband was actually the leader of the big star wars light saber attack. And yes that was him on top of the Clubhouse.

I grew up in a home with all boys. Me in the pink room with a ruffle on anything that has surface area. I went to scrimages and games and grew up with the same Starwars, video games, and mouth open stares. Strange enough I love it. I love how much fun they are. The simplicity of the boys. They are simply loud, simply physical, and yeah simply loud (again).

It seems the really cool thing to do is say "cha cha cha" when you sing the Happy Birthday song. I even heard some random teen kid singing it that way at the park last week. So here is a clip of us singing with his cake. I burst out laughing especially at the end of the song when Aiden just had to stand up and do his hands "cha cha cha!" (Aiden is second to the right on the couch)

you might want to pause the music above playing

Why does that song make me smile and cry a tad each time I hear it? Ohhh Motherhood. I just love it. Granted it isn't the easiest job in the world and often the road of motherhood is paved with guilt, but I can't imagine the days when my boys are teens and don't want these cuddles, and kisses. I guess by then they will be so stinky and hormonal I won't want it so much either. Who knows. Until then I will just savor the moments I do get to have with my cuddly and kissable kids.

In anycase.. did you catch a load of that R2D2 cake? That was this year's masterpiece. I may be able to pull off some scrapbooking and cardmaking but I think I will leave the cake design for some other Martha Stewart. That was my best effort. One child who came to the party (who shall rename nameless) made sure he repeated to me several times that the R2D2 looks NOTHING like that. Aiden was cute, he stood up for his mom, "All that matters is that it was made with Love." now THAT's my boy.

So to sum it up, that was the big event. The wild fun silly sleep over. Yes there was Simon Say's, Pin the tail on the donkey, Pillow case decorating, and a full fledged pillow fight. It was adorable and I think it will go down in the memory banks as my favorite Birthday party thus far.

In other Hawk family news, Things are well. Aiden has had some issues with the heat and headache, but over all he is incrediably stable! I can't get over it. Next monday he will see his nephrologist, we will finally start his vasopressin trial. I can't wait! I am really hopeful it will be just another drug to help him with his issues. What ever it all is, they are on the right track. I am just so thankful.

So I gave a little challenge to some of my fellow "liver mom's".. I had challenged each of them to place the 10 myth's of organ donation on their kid's caringbridge pages, blogs, or facebook. I think everyone did it .. but me! So because of that.. I want to share this very important information.

April is National Organ donation Awareness month. This is also the month where we celebrate Aiden's birthday. One couldn't happen with out the other. I hope you take the time to read the Top 10 myths of organ donation, and share it with at least someone you know. Most American's want and intend to donate their organs.. however because they do not share these wishes with loved ones their intentions are not followed through. I can imagine at the time of something so tragic as a loss that it is NOT the time to make the choice of organ donation. So do it NOW. Tell everyone you love that these are your intentions. So God forbid if the time ever comes, they won't be faced with that difficult choice. They will stop and remember.. " I remember Lisa said, this is what she wanted. I want to fufill her Last wish"... A death not in vain.. lives will be saved.

Please know I respect the sensitivity of the topic but please respect also that if it wasn't for hero's that made this choice I would not be showing you the photos of big smiles and 7 candles on a cake. Too many children I have loved along the way, have died waiting. One child is too many.. please take the time to read this and pass on. God Bless!!

It can be hard to think about what's going to happen to your body after you die, let alone donating your organs and tissue. But being an organ donor is a generous and worthwhile decision that can be a lifesaver. Understanding organ donation can make you feel better about your choice. If you've delayed your decision to be a donor because of possibly inaccurate information, here are answers to some common organ donation myths and concerns.

Myth No. 1. "If I agree to donate my organs, my doctor or the emergency room staff won't work as hard to save my life.They'll remove my organs as soon as possible to save somebody else."

Reality: When you go to the hospital for treatment, doctors focus on saving your life � not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care has nothing to do with transplantation.

Myth No. 2." Maybe I won't really be dead when they sign my death certificate. It'll be too late for me if they've taken my organs for transplantation. I might have otherwise recovered. "

Reality. Although it's a popular topic in the tabloids, in reality, people don't start to wiggle a toe after they're declared dead. In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead than are those who haven't agreed to organ donation.

Myth No. 3. "Organ donation is against my religion".

Reality. Organ donation is consistent with the beliefs of most religions. This includes Catholicism, Protestantism, Islam and most branches of Judaism. If you're unsure of or uncomfortable with your faith's position on donation, ask a member of your clergy. Another option is to check the federal Web site OrganDonor.gov, which provides religious views on organ donation and transplantation by denomination.

Myth No. 4. "I'm under age 18. I'm too young to make this decision."

Reality. That's true, in a legal sense. But your parents can authorize this decision. You can express to your parents your wish to donate, and your parents can give their consent knowing that it's what you wanted. Children, too, are in need of organ transplants, and they usually need organs smaller than those an adult can provide.

Myth No. 5." I want my loved one to have an open-casket funeral. That can't happen if his or her organs or tissues have been donated. "

Reality. Organ and tissue donation doesn't interfere with having an open-casket funeral. The donor's body is clothed for burial, so there are no visible signs of organ or tissue donation. For eye donation, an artificial eye is inserted, the lids are closed, and no one can tell any difference. For bone donation, a rod is inserted where bone is removed. With skin donation, a very thin layer of skin similar to a sunburn peel is taken from the donor's back. Because the donor is clothed and lying on his or her back in the casket, no one can see any difference.

Myth No. 6." I'm too old to donate. Nobody would want my organs. "

Reality. There's no defined cutoff age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s. The decision to use your organs is based on strict medical criteria, not age. Don't disqualify yourself prematurely. Let the doctors decide at your time of death whether your organs and tissues are suitable for transplantation.

Myth No. 7. "I'm not in the greatest health, and my eyesight is poor. Nobody would want my organs or tissues. "

Reality. Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs and tissues may be fine. Don't disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs are suitable for transplantation.

Myth No. 8." I would like to donate one of my kidneys now, rather than wait until my death. But I hear you can't do that unless you're a close family member of someone in need. "

Reality. While that used to be the case, it isn't any longer. Whether it's a distant family member, friend or complete stranger you want to help, you can donate a kidney through certain transplant centers.

If you decide to become a living donor, you will undergo extensive questioning to ensure that you are aware of the risks and make sure you're giving away your kidney out of pure goodwill and not in return for financial gain. You will also undergo testing to determine that your kidneys are in good shape and that you can live a healthy life with just one kidney.

You can also donate blood or bone marrow during your lifetime. Contact your local chapter of the American Red Cross for details on where you can donate or sign up.

Myth No. 9. "Rich, famous and powerful people always seem to move to the front of the line when they need a donor organ. There's no way to ensure that my organs will go to those who've waited the longest or are the neediest."

Reality. The rich and famous aren't given priority when it comes to allocating organs. It may seem that way because of the amount of publicity generated when celebrities receive a transplant, but they are treated no differently from anyone else. In fact, the United Network for Organ Sharing (UNOS), the organization responsible for maintaining the national organ transplant network, subjects all celebrity transplants to an internal audit to make sure the organ allocation was appropriate.

Myth No. 10." My family will be charged if I donate my organs. "

Reality. The organ donor's family is never charged for donating. The family is charged for the cost of all final efforts to save your life, and those costs are sometimes misinterpreted as costs related to organ donation. Costs for organ removal go to the transplant recipient.

How to donate
Contrary to popular belief, signing a donor card or your driver's license does not guarantee that your organs will be donated. The best way to ensure that your wishes are carried out is to inform your family of your desire to donate. Doing this in writing ensures that your wishes will be considered. Hospitals seek consent of the next of kin before removing organs. If your family members know you wanted to be a donor, it makes it easier for them to give their consent.

If you have no next of kin or you doubt your family will agree to donate your organs, you can assign durable power of attorney to someone who you know will abide by your wishes. A lawyer can help you prepare this document.

Love
Lisa

Thursday, April 16, 2009 10:12 AM CDT
This weekend Aiden will be turning 7. SEVEN!? OK for those with teens or adult children this may sound like infancy, but to me.. this is amazing. How can that baby I held in my arms with that white peach fuzz, be seven?

I can't even tell you how much I love Aiden. I love every single thing about this child. He is amazing. He is sassy. He is literal and wild and funny. He is dramatic and crazy, but so sensitive to others. He loves babies and he loves animals. The greatest lover of trains and fickle lover of spongebob, R2D2's, Thomas engines, and baseball. He is a great brother and precious son. Aiden is no where near perfect but so perfectly fit for us. I love his yellow hair that grows sideways in the back. I love his 13 freckles on his face. I love that he is little and shorter than all his friends, but is a tank and when he hugs them he always picks them up off the ground. I love that he is LOYAL.. man he is loyal. I love that he is so stinking Black and White. It is always good for a laugh when you takes you so literal. I love that he chews the buttons on his shirts and that he is the loudest person I know. Maybe besides myself. I love that he looks like my father. I love that when I see anyone that knows my dad that they always remind me. I love that he is like my father because I know he will be a good man. I love that he wants to be a civil engineer, instead of a super hero or a professional sports player, it seems so obvious that he would want to build bridges and use math. I love how he is the most cuddliest child ever, and when he cuddles he does this ridiculous voice like a baby. I love that is strong and brave but fights and kicks when he is sick of the poking. I love that he has fight in him. I love that. I love that he wants to be like his Daddy and less like me. I think it is funny when he asks for Daddy and says, "It's a boy-thang". I love Aiden. I love when he was a baby and he learned to walk he raised his hands in the air. Always like he was saying, "hallelueia!". I love when he was potty training it took him forever to want to do it, but the day he was offered money he became potty trained. I love that he was born and given a little blue baby and is turning 7 and that little blue baby still goes everywhe re. I love that he likes baseball but loves sitting on the bench socializing. I love when he was 4 how he would set up elaborate thomas tracks and I would trip and fall all over them. I love when he first learned how to whistle he was only 3, and now with another three year old I see how amazing that it. I love when he was a tiny baby he smiled all the time and he is almost 7 and still smiles all the time. I love Aiden. I that he makes his scar sing the chicken dance and that he thinks people who are different are beautiful.

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

I was induced late in my pregnancy because my blood pressure was rising. (this was a no brainer I was the size of a house) They decided to induce me on a wednseday. I was birght eyed and excited. I wore a pink maternity shirt and cute little shorts. I had the blue Toile Vera Bradley diaper bag, stuffed to the brim with the most ridiculous things. I had rattles and diaper creams. I had those plastic baggies that smell good for poppy diapers. I have enough clothes for that new born baby to have a fashion show. I had stuffed animals and special photos of us for his bassinet. I was ready to have a baby.(or a toddler with all that stuff) I was ready to have an epideral...to have a baby.

It was supposed to be lovely. I brought nail polish and cute socks with frogs. The induction was simple, it was an IV. The contractions were mild, but I decided to go ahead and take that drug that helped me sleep. The last thing I remember was signing the consent and joking how the side effect of "psychosis" would surely be me. 20 minutes later I put on a show. Screaming and crying, and imaging my tounge swelling. My family and friends were in the room, and couldn't help but laugh at my flopping and screaming, because yes.. I did have that side effect. I had lost my mind. I vaguley remember my last moments before I slept saying, "dont... laughh.... at... me...I .... am.... dying......"

The induction began a wednesday and when thrusday afternoon rolled around with full contractions. The doctors came to me with more consents for a c section. I wailed and rejected, remembering that liberal strong woman who taught me a birth plan to fight the knife. Of course I didn't fight the knife because of any liberal healthy ideals.. but just because I am a big fat wimp. They said the baby was fine.. but just huge. They didn't think he would be coming, I was just "stalled". When I knew I had the option to keep trying that there was no danger.. I set my mind to having the baby. Still yet another night comes and goes, doctors and nurses change shifts, and my vistors are simply over it completely. One friend, came with a bag of candy assuming I had already popped out this baby, and threw the bag at me and said, "Have you ever heard of a C section! it has been 3 days!" Still I held in there. I knew he just was gonna come when he was ready. Friday came my 3rd day in labor, my nurse comes on shift and says, "You will be having a baby today. I am sure of it." I was only 3 cm's dialiated after days of pitocin, stripping things that shouldn't be touched, and stopping epiderals. It was not looking good.

Then ... with hair frazzled, dark circles under my eyes, froggie socks strewn on the floor, and family and friends completely annoyed. The loveliness of it all was gone, the pink shirt.. the stuffed diaper bag.. it was no longer adorable. 72 hours after induction... I went from 3cm to 10 in less than 1 hour. And then.. there he was. Cone head, pink as a cherry, white fuzzy top, ice blue eyes, my 9 lb baby was born. Tears of joy, tears of relief. He laid limp, not crying. They gave him oxygen, slapped him, banged his feet. They rubbed rubbed and rubbed. No cries. The nurses seemed to pound on his back, telling him, to "just let it out". He didn't. He just peeked out of that one eye, with other eye nearly glued shut, and took it all in. No cries but nothing wrong. They laughed and laughed how it had been 10 minutes and they could do nothing to make this baby cry it out. Finally he did. A little squawk and he was placed in his father's arms.

I don't think I really knew who I was then. I felt left out and felt like I didn't know what to do. I wanted to hold him and magically have a bond. I wanted it to be like the movies.. but it was nothing of the sort. My fat rolling baby was placed in my arms. I knew I wanted to just stare and be left alone with him. I just couldn't believe how perfect he looked. How that he was something I grew. I couldn't believe he was mine and somehow I was to be trusted with this LIFE! I stared at his helpless little arms and how his fingers were wrinkled and long. His feet curled in like they must have in my belly, and his eyes were staring into mine. He knew me. He loved me so much. He looked into my eyes just as if he was saying, "You are the one.. that voice. I looked for you and found you."

And at that moment, I was a mommy.

Love does grow. Hours went by, then a day. When he wasn't squeaking next to me, I felt half there. And when he was with Joey I felt so a part of something I had never felt before.

I was a mommy.

The story gets pretty tragic after that, crying and devastation, surgeries, painful procedures, begging on my knees for his life. Fights with Joey; begging God to just take me instead, and moments where I took photos sure it would be his last. The journey of Aiden's birth has been so much like his life. Pink and rosey all lovely with expectation... and then a long road of waiting ending in joy and love that can't actually be described.

Now he is 7. Oh praise you Lord. Praise you God. How my life would be so empty with out him. With out each day. Thank You God that those days we thought were the last.. were infact not the last, but more miracles and more gifts. I treasure this child, this gift He has given me... and can't imagine it being any different. One more year, one more day... none of it will be taken for granted.

Happy Birthday my little Bubba. I love you to the moon and back and then some... heres to a wonderful year of healing, and health, and school, and baseball. A year of laughter and growth and more memories.

Your daddy and I love you so much

Happy Birthday Aiden

Momma

Thursday, April 9, 2009 9:46 AM CDT

Still no biospy results. So in the mean time, I will update for fun.

Our trip to Ohio wasn't ALL bad. We did have some fun times along the way. I you might want to stop for a moment, mute the above music (in the playlist.. just pause it or mute it) and then continue.

We got to see a lot of special folks, even if it was sort of a blur.

When we got to Toledo we were so fortunate to meet with Sara a friend of ours who was born with Biliary Atresia and is one of the oldest people in America with no transplant. She takes NO medicine and is doing amazing! late 20's and had a Kasai only and it worked. She offers so much hope to families who have kids with Kasai's only.

Sara works for the University of Toledo, where Dr. Grubb works. We got the "hook up" and stayed at the Hyatt on campus. Whewww The Hawk family was getting fancy! We swam in the pool and I melted into the hot tub. It was great! In our room the University even sent us a gift to make us feel welcome.

You all know what happened at our appointments but afterwards we even got to have a special little behind the scenes at the education building at the zoo! Here is Aiden with two of the zoo workers they gave him the behind the scenes tour of their education animals.

And I here is me with some yucky snake/lizard thing. Of course they insisted I took a picture with it because it's name was "Big Momma". That is what the kid's call me. And officially my Wii character (Mii) name. Big Momma. Nice. (I can thank Joey for that)

Me and Big Momma. I LOVE this photo because of Mason's face!! LOL He is HILARIOUS! I laughed SO hard when I saw this! That look is priceless. He wasn't SO sure about that.

Here is Aiden petting the Guinea Pig.

It was a very quick little visit at the zoo, we didn't really get to see any of the other animals but we will for sure come back in the fall and plan a day.

After that we zoomed to our next destination. We stayed with a family that umm well we actually never met! It was pretty funny, because she is a "reader" of the site, and over the years we have become online friends. She is a friend of a friend and I just knew it would either be weird or it would be great. Thankfully it was the latter.

The family has two teens, one being a 12 year old boy. Aiden was enthralled. (Noah was patient.) Anyway, that is how Aiden found Hockey. He picked up a stick and now can't put it down.

Here is a little clip of Aiden playing in the front yard. I think it was about 40 degrees.. but us Floridians, we hung in there.

click play

(Again the kids said I am Elmo. In this one. Whatever.)

Not only did we have fun picking up new hobbies like Hockey, but we had the worlds coldest picnic! We got to see the Hamet family on this trip and for some insane reason we orchestrated a picnic in near freezing weather. Marisa is their youngest child, she was born with the same rare liver disease as Aiden and was transplanted as a baby. Here is Marisa and Aiden:

So cute!

Aiden and Mason playing in a cullvert. ;)

The adventure continued. The dark circles grew darker and I was just wanting to get where we were going, and just rest. But JOEY decided it would be SOOOO much fun to go to the Airforce museum. Not just any Airforce museum. But the NATIONAL one. Can anyone say SNOOOORE?

Here is Aiden sitting in some plane.

Here is ME.. bored out out my mind.

Aiden was not allowed to eat anything that whole day, so here is the lucky find at the cafe. Popsicles.

We walked and we walked. We saw every thing from the cold war to the first propeller to WWII planes. We found the one my Dad flew in, we looked and looked and looked more. By the end of the day Joey was running from plane to plane muttering things like, "OH WOW they DO have a B16 393..... Oh LOOK.. it is a c78 59-er." Seriously Joey. It. has. Been. 5 hours! Even the boys began to feel the toture of it.

Their faces.. say how I feel.

At this point we weren't allowed to eat food because Aiden was getting scoped the following day, so we were slap happy. It seemed that anything would put us over the edge, but the constant through the whole trip was this one voice. This one woman we have named "Crazy Lady".

Our GPS.

After 44 hours in the van, "crazy lady" finally did it. She lost her mind.

Hit play above. The crazy lady on GPS began to yell at us. I think she just lost her cool and was really sick of us making our own way on the road. You can even hear Aiden scream in the back, "That's HILARIOUS!" It was.

The rest of the trip, yeah.. it wasn't that fun. We stopped at a lot of gas stations, we saw way too many doctors. We shed some tears and Joey even threw up a few times. It was kind of ugly. BUT.... let me show you one more clip. One more little video of something that says it all.

At Hem/onc clinic Aiden was playing his Video game waiting to be seen. It was just a moment that made me smile inside. A moment that just showed the RESILIANCY of a child.

hit play.

After days of procedure, pokes, appointments, scary talks, and a unfamiliar place. My boy doesn't even look up as they place the bands on his arm.

There is NOTHING wrong with looking at the days that stink. Talking about it. But it is equally as important to look at the good times too. No family wants to have this happen to their child. No mom wants to have to see the things I have seen. Joey and I work so hard to make these hospital visits somewhat fun too. Even if it means cracking up at the GPS.. we just have to laugh sometimes or we would never make it.

I want to thank all the people we saw along the way, the faces I didn't include and the ones who hosted us in their home. I want to thank people like Elizabeth and Mike, for even though we didn't ever really know you, you opened your home to us. You never know what you would have gotten.. we could be a bunch of weirdos. (And actually are!) I want to thank you guys for the encouragment the love and the prayers. I would get a moment with computer acess and scramble here hoping to read a word of encouragment or a thoughtful note in the guestbook. Thank you for taking the time to do that. It means so much.

I never expected to have SO much of my life open on the internet. I never expected to show people everything like we have. But with this honesty you have never taken advantage or mocked us. Instead it has become a family and I love you all for it.

This is Easter Weekend, the holiday for Christians that set us aside from other beliefs. For me it is a time of renewal, and rememberance. No matter what we have done, been through and have in our lives, Christ covered it all at the Cross. He is alive today and the Spirit has filled our lives.

People ask us that "how do you do it?" question EVERY SINGLE DAY. Well there actually is one clear answer.

"I can do everything through him who gives me strength." Philipians 4:13

Have a wonderful weekend, and make some time in your day to create the good memories.

xoxo Lisa

Friday, April 3, 2009 3:30 PM CDT

I was the most successful hermit. Greasy hair, PJ's all day, and of course the ulimate evidence of hermit-hood I didn't cook one thing, it was take out for dinner.

Today, my plans of hermit-hood began perfectly from Heaven.. it was a rainy day! I thought to myself, 'I can't believe my luck!' Not only do I feel miserable and depressed, but it is a rainy day! Perfect snuggle weather. Aiden slept in past 9:30 (I should have seen this as a red flag) and Mason was up and 'at em in full cuteness!

I continue my hermit-hood by canceling my playdate. (a plan I made with a good friend just because I KNEW I would be a hermit and thought it would be wise to have a plan in place) I break those plans, and I am feeling fully greasy and sleepy and cuddly with my 3rd cup of coffee and my house dark and cozy then I hear,

"Mommy I need to go to the hospital"

Amazing how in a split second I can go from a lavishly gluttonous moment of self pity to... immediate SURVIVOR MODE.

He walks into the bathroom, and has terrible diahrea. He tells me that he has a bad stomach ache and he needs his zofran. He is pale and weak and holding his head. I can tell he is trying so hard to not be sick, but he is sick. He holds his Sponge Bob trash can that he loves to have when he is having a crisis and he lays down. Several times he tells me he is thirsty. I am up, hurrying through the house and KICKING myself for not having that bubble bath I was contemplating. I search for the baseball hat, the greasy hair will have to do. We are going in.

The zofran takes effect, and I carefully begin to give him his meds. High dose steriods, an extra dose of florinef and then his others. Then I see it. Biscuit's Valium. (yes the dog has valium for car rides... can we say High maintence?) I know Aiden was Rx'ed Valium Suppositories for this very moment. Of course I didn't fill it because it scared the daylights out of me. I see Biscuit's and I think to myself.. if he gets worse I will page the nephrologist and see if this is ok to give him. But I know that is a ticket for at least 3 days in the hospital. DANG this is not what I expected to do today!

Poor Aiden is wavering from feeling "all better" to.. "please take me to the hospital". His blood pressure was what I consider stable. So I am just riding this one out at home. Poor buddy just couldn't let that Spongebob trash can go, but the diahrea did stop after some time, and he seems to perk up.

The whole day until about 1 hour ago has been up in the air. My day of being a hermit was gone, POOF, like that. It was fine because I was wallowing. And I think with the weekend ahead of me, I might have just committed the whole rest of the spring break to movie watching, pop corn popping, couch cuddling. I mean not that there is anything wrong with that... BUT when you are crying into your popcorn because of a furniture commercial, you MIGHT be a hermit.

So, as of now his Blood pressure has climbed up to 130/90, a far cry from the 90/40 it was all day. The white pale lips are replaced with more pink ones.. I am thinking we have actually dodged a bullet.

I don't know what is in store for Aiden. I don't know what is going on. Why is this happening? Why does he have to have bad days? Why does this come and go like the wind? And heck for that matter does the wind cause it? I just don't understand why. Does he have these disorders with his bone marrow? Are they responsible for everything? Will they ever be satisfied and stop searching, or will there always be more tests waiting to be run?

I am done with being a hermit for this go-around. I am just planning now on filing my questions away. Putting them in that special box in my head that never gets opened, never gets answered. Time to dust myself off, move past this place.. because for me I don't get the luxury of feeling bad for too long. Because it never ends. This isn't over next month or year. This roller coaster is the longest ride in the park. And if it did end.. then my hell would truly begin.

So many people give me advice. They tell me what prayer to say, what verse to look up. People tell me if I should cry or if I should put my lipstick on. I get advice how to do it all. But here is the scoop. I will do it my way. There will be no rules. There will be no right or wrong. I will continue to strive to be in God's will, but also remember that God's will isn't always a perfect little box with a perfect little bow.

This morning, it was perfectly acceptable to be greasy and tired and crying at furniture commercials. This evening, it is perfectly acceptable to be running the store, saying hi to my other Mom friends and pretending I am just like them.

From Hermit-hood... to Survivor-mode.... to my favorite place of all

DENIAL.

Have a great weekend. I know we will... and if we end up going to the hospital tomorrow.. I will deal with it then.

Showered, clean, and adding that lipstick:
Lisa

Wednesday, April 1, 2009 8:30 AM CDT

We are in georgia, we arrived at 3 AM. I am pooped and Joey must be delierious. But we did manage to get slap happy and sing oldies music all the way home. Looking back on last night it was pretty ridiculous. Just the perfect way to end a bad day.

Yesterday was a bad day. We went to Hem/onc we talked about some tests that came back weird last fall, and then Dr. Kalfa said she wanted to do a Bone marrow Biopsy on Aiden. She might as well injected us all with crazy juice because after that all four of us were a mess. JOey began an immediate Migraine, and I was in post traumtic stress land. Long story short they need to rule out a disease called Mastocytosis. It seems he has one of the "translocations" (whatever that it) of his cells for it, and he fits the symptoms well. We know he is having some type of disorder with his eosinophils and it isn't normal for him to have so much red blood cells. She said that they needed to do a bunch of send off labs to the MAYO Clinic and that they wanted other baseline labs run asap. SO that is when it got a tad hairy. Aiden's port was accessed and ready to go, but when they went to draw the 25cc's of blood they needed it wouldn't work. Great. It would flush and then no return of blood. We had him standing up, laying flat, arms over head, cough cough... it wouldn't work. FInally, after 20 minutes we got it to draw labs. Phew! Now we have to remove the dressing and de-access it asap so we can make it to our cardiology appt. As they were removig the dressing the nurse was using chlorhexidine. Next thing you know Aiden has an allergic reactiont to it. I was not so impressed as his mom to the level of reaction he was having but dang! they were Jumping and getting very concerned. In the meantime while there are now 6 nurses and a doctor surronding Aiden trying to Push Benedryl through his IV stat they realize the blood was sitting in the line for to long and they think it clotted!! Aiden is now hysterical. Screaming crying, and being held down. His eyes is swelling and red and he says, "I am getting very sleepy". The doctor at this very moment says, We need to get a serum histimine level now! This is the perfect time to see what his MAST cells do when he has an allergic reaction.

WHAT?

Go figure it was a convienent that he was having an allergic reaction right there in hem/onc with this super specilaist on redblood cells, eosinophils and Mast cells. It may have been convienent but it was traumatic. Aiden was unconsolable. And that did it to me.. I think the weeks of stress just got me and I just broke down right there. We were all wearing masks and I am using mine as a tissue. I just coudln't stop crying. It was terrible. Yes I know that isn't what I am supposed to do. I should be the strong one, but I am his mom. This is a night mare.

The finally take the dressing off, to see why it wasn't working and then with no pain meds re insert the needle in his chest. Aiden was hysterical. Screaming for Biscuit. Begging to go home. ONE HOUR later. Hives have gone down, swelling down, benedryl in his body, and we are told we can go to his cardiology appointment that we were now 1 hour late to.

Joey's migraine was so severe he was almost vommitting just walking down the hallway. I just kept crying while I walked. Poor aiden was still crying, and Mason was doing his best to go into la la land.

We make it to cardiology, everyone there had heard he had had a reaction at hem/onc and they all had to ask a million questions about it. Aiden wipes his eyes, puts his shoulders back and says, "that was worth a big prize from Toys R us." And he was back to his charmng self.

After them now doing an EKG, and vitals the cardiologist came in and gave us the ONLY good news of the day. That he had spoken to Dr. Grubb and they Both agreed. OK that was the end of that, good news done.. bad news to follow.

Then he followed with the crappy news of... Aiden DOES need a pacemaker. But he doesn't need the regular one function, pacing device. The kind of pace maker Aiden needs to benefit him is a special one. HIs words, "Fancy with all the bells and whistles". The bad news. Aiden is not large enough for it. He is too small.

OK.. can you just throw anymore punches our way? JOey is now leaning his head back in the chair, Mason is asleep in his arms and Joey's eyes are closed. I am pretty sure Dr. Knilians (chief/ director of cardiology) has never had any less engaged parents. I said, "OK great till then what do we do? DO we just cross our fingers that his heart doesn't keep slowing and slowing and slowing?" He said he felt pretty confident it wouldn't do that, but if it continued to slow they would be forced to place the generic pacer in him till he grew. It seems that wouldn't be as safe as it sounds.

Aiden is full with headphones, playing Nintendo.. joey has officially checked out. Mason asleep.. and there is me. Face crusty from my previous cryng hearing all about how unpredictable Aiden is. How there is no real science to explain this. That his brain is the problem not his heart and as the wind blows he will either suffer or thrive.

Yep.. heard that before. Just he had to get a bone marrow biopsy, and yep we have heard this before. I am now ready to go home.

God bless these docs no matter what they are going to say to us, we are not in the mood to hear it. It is hard to tell a family and it is hard to recieve. I felt like i was sitting there back in the day when aiden was an infant and the surgeon said to us, "We need him to grow as much as possible for his liver transplant. It raises the survival rates..." Grow? He is on steriods! He doesnt grow. He is the size of a 4 or 5 year old.

They want us to come back asap for his bone marrow biopsy, they want us to come back for two drug trials, so now We are headng home and I am gripping for this.

By the time we got in the car, we all were a mess. And joey's migrane was so bad he began to vommitt. I kept thinking, Yesterday we were like the hospital poster family. Smiling, happy, kissing bye bye for anesthesia... and now we are all laid out and done.

It was a bad day. Hearing words like Chronic Leukemia and Mastocytosis and bone marrow biopsy are enough to put any parent over the edge of sadness... but somehow I have this feeling that just because it is us, just because we have been doing illness for so long, we are held to a higher standard. We shouldn't be sad. We should just count our lucky stars. We should just know, "God doesn't give you more than you can handle" BALONEY! This sucks. We aren't counting lucky stars today. I am sad, I am angry, and I just want to go home. I need my bed. I need a break. And I just want to focus on the fact that Aiden is relativly happy and has managed to have have joy through it all.

Today and heck, probably the next few days as I fall into hermit mode I don't want to hear "look to the bright side" or..."Good things come from bad".. I just want to be mad. For once. I don't do it often publically. I do it often privatly. But I thnk we earned it. That big fat needle going into his port was it for me. ALl else was just bla bla bla.

I remember holding Aiden at only 6 weeks old. He was waiting for his Kasai surgery. A Major abdominal surgery for my tiny newborn. I remeber telling Aiden, "Let's run away. Me and You. We will run away to Alaska. No one will find us and this will all go away." I am feeling like that is a good plan.

SO, anyway. Thank you for the prayers. Thank you for saying so many nice things about Aiden. How he is brave and how is a hero. I agree. He is my hero. Last night as we were holding hands in some random gas station in some random state. He did his secret hand squeeze to me.

Squeeze squeeze squeeze

and then I always do...

Squeeze Squeeze Squeeze Squeeze.

It means:

I Love You

and I say..

I Love you More

Last night... he looked up at me and just hugged me after I did the 4 squeeze back. He just stopped right there in between the beef jerky and the chips aisle and hugged my waiste. He held me so tight I just wept right there. No matter what smiles you see.. we are still human. And sometimes it really hurts.

SO that is my update. Sorry it isn't so cheery. Yesterday was a bad day.

Lisa

Monday, March 30, 2009 5:31 PM CDT

THE UPDATE:

Aiden is amazing.

He went from Saturday night until today, (monday) at 4:00 PM with NOTHING to eat. He barely even complained. When he did, he would always say, "It is ok.. you guys can eat. It is ok.. I won't cry." Uhh seriously? Is he amazing or what? So then he would just drink, and pretend to chew it. Never complaining. (I didn't eat that whole time either and i complained non stop!) I thought to myself, ok.. this seems too good to be true. I knew today would be a miserable day. We had to wait till 11:20 for his scope and this was like a recipe for disaster. Too much time to sit and wait and worry.

BUT... he was amazing. Silly, smiling, happy. He was playing his Nintendo, he was drawing, playing cars. Whatever. Every once in a while he would say, "How long will my procedure be?" or "When I wake up from the sleepy medicine, can I eat?" He was so resigned to the fact that this was how it is.. and complaining wouldn't make a difference.

At one point there was 4 nurses, 1 doctor and one fabulous coordinator in our room. (plus Joey, Mason, myself and aiden) It was like a zoo. Aiden answers questions, puts his own hospital gown on, stand for blood pressures, and tempatures. And nothing. Not even one glance at me wanting a snuggle or a cry.

They tell him about the port and how they will do the scope, he smiles and giggles and says, "can daddy walk me back?"

I give him a kiss and a hug and tell him I love him more than anything and off he goes.

UN REAL.

I know I should probably be irked by the fact my son is so used to procedure and surgery that he isn't even phased.. but I would rather I just can't stop thinking: I am so proud.

PRELIMINARY RESULTS:

I got the prelim results and they handed me the lovely photos of his insides...well the photos were obvious that his esophogus was a mess. It was the worst I have ever seen it. He has a large polyp that has grown at the entrance of his stomach from an old scar from where he had his varicies (boo hiss). The esophogus was white and hard and thick and swollen and awful. There were ugly "angry" inflamed areas that even just a regular mom knew to wince at. It was obvious he still has Eosinophilic Esophogitis still.

The stomach and lower looked pretty normal but this will only be determined by the biopsy results. I don't know what that will show. It is very likely that he has some more eos disease there as well. We will know the results around Friday or so.

THE PLAN:

SO we had an appointment with Dr. Yazigi Aiden GI doctor/ primary in cinci. She is the one who really does make all the ultimate choices over Aiden and has gotten us this far. It is official. We have a plan. And a big one at that.

We will be doing a 1 month trial on Vasopressin

We will be discussing the Pacemaker tomorrow, but she supported getting one.

We will be returing in June to cincinnati to see Dr. Putnam the immunolgist/ bone marrow transplant doc that works closely with the team to discuss MAST cells/ eos.
We will be......

STOPPING HIS PROGRAF.

Uhhhh.. yep. In June. Once the above things are accomplished a team of the doctors will begin to work on the "prograf wean" protocol. We are officially trying him on Rapamycin. This very well may fail but it is worth it.. it is worth the effort.

I could techinically write a 5 page update on each of the above things listed in Aiden's PLan.. but instead I need to say that tomorrow is actually the 'BIG day.

In the morning we will be seeing Dr. Kalfa a hematologist/oncologist that we saw last visit. She is the one who specializes in the red blood cell. She wants to see him and do a special test on his eosinophils.

In the Afternoon we will see the Director of cardiology/ electrophysiology Dr. Knilians. He has already spoken to Dr. Grubb and I will find out the fate of their discussion. I do know that the 40 heart rate which was on the holter/ the heart monitor/ the PICU readings etc.. is wayy too low, and will probably earn him a Pacer down the road if they say no this time. I am thinking they won't do the pacer because ... well, that just isn't how things work for us. We always have to have a little extra "wait and see"s. It is the nature of the beast!

So... after all of that, how am I supposed to update you all and discuss the plan knowing that we have more decisions being made tomorrow?

I just would rather wait, till I know the rest. In the mean time it is all going to be ok. I am telling myself over and over no where else could so many doctors work so well together, communicating, taking ideas from one another. No where in my past experience has any doctor groups so openly said, "I don't know.. but we can work together to help figure it out." I am so greatful for this team, and hospital. They have given Aiden a better life, and me and Joey soo much hope. There was a time when I didn't know what we were facing, where I didn't know what to do. Now, I know. We have options, we have medicines, and we have hope.

Today I saw my little boy grow up in the medical world. I remember him as a tiny infant with his little bright red heels being pricked till they were bruised and blue. To a toddler learning to walk with broviacs and Tubes from his nose. From a little boy who couldn't even touch the play equipement at playgrounds because of the terrible allergic reactions he would suffer. To a school aged child watching all of his friends have their "first day" of school, and him wanting it so bad to be for him. Now.. at almost 7 years old, he is growing up in this world. He is handling the procedures and surgeries with out many questions, and with very little begging to make it end. He knows it doesn't end. He knows the begging is futile. This is his life, the only childhood he gets to have. His spring break is spent, getting blood draws and listening to doctors repeat the same things over and over. These days can never be given back to him.

But he is with us. He is here. He has a future, even if it is with hospitals. He has time. He has laughter. He runs, he jokes, and he makes me so proud.

Tomorrow I will know more. I will share more and then we will go home. I just am ready to be home.

Tired, relieved yet anxious, but always in His Grip.

Lisa

One more photo:

Leaving the hospital today, this is why I love Joey so much. His arms are never too full for his family.

Saturday, March 28, 2009 9:48 PM CDT

(prepare yourself for the world's longest update)

OH
My
GOSH

I need to take a deep breath. I just had a panic attack because I couldn't get on my CB page. I guess caring bridge decided to do some updates but in the mean time made my "classic" caring bridge page almost impossible for me to figure out how to update it. eeks!

Yes I am fortunate enough to have had this caring bridge page from years ago. Gosh I need to check that journal history to see when I opened this thing. Anyway.. It is all ok, I figured it out.. I am on my site.. all is ok.

Phew!

OK now back to the update.

I couldn't get on here.. so I used our Handy Dandy "Team Aiden" group on facebook to update a lot of you guys.... this is what I wrote there: (skim through if you already read)

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

"Well what time for Caringbridge to decided to not be up and running. SO here i am sending you all a note on FB.. I apologize if this is annoying, I will keep it to a minimum.

We saw Dr. Grubb and he was concerned about the bradycardia as well.. The talk of the pacemaker seemed that it was looming as either the next step for Aiden or after the next step. He was very dissapointed at the location of the heartmonitor and is calling Cinci (Dr. Knilians) to discuss maybe relocating one ad exchanging it for a brand spanking new one. (only been placed once in the US.. Aiden would be the second one in the US to have it!) BUt because the monitor did read very low bradycardia it might just be time to do the pacer. He said, "If he was an adult this would be a no brainer, they would do the pacemaker asap.. but because of his size, and previous transplant/surgery, and immune supression they have to really consider the surgery as a high risk one." They can't just go through a vein in his neck they woul have to make a slit in his diaphram under his ribs, and then up to his heart. I got queazy and panicked just hearing that. SOOO the idea of weighing this heavily is a goo idea. But basically Aiden's heart running as low as it does he said, it is called "realitve bradycardia" and that his heart might as well be stopping because it can't work efectily that low.

Nice.

So! Like the good doctor he is, he is calling our other cardiologist in Cinci and they will devise a plan. Dr. Knilians is very very conservative so I suspect he will not be for pacing Aiden just yet either. Heck the anesthiologist didn't even want to scope him because of his low HR and anesthia history. SO... we as usual will just be at the mercies of their caution and fear of liability. I don't care because I know that we are moving ahead.

Dr. Grubb perscribed a new medication for Aiden and we are very excited about it. As long as his kidney doctor says yes.. we will be starting something new.. that I just think will make his life better.

Things are getting there.. we will make him safe and better I just feel really good about it.

In the mean time, he is in the street of our friends house in Michigan playing Hockey. His new obsession. HIs Uncle Matt will be very excited to hear this. I Will update tonight on CB when I can get a moment.

Thank you for your prayers keep them coming, As of this afternoon we have to stopall food for Aiden till monday, he is getting scoped. Part 2 of the hospital drama"

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

I like how I wrote "I will try to keep it to a minimum" Yeah right.

So... the appointment went well. Dr. Grubb was as usual very informative (Joey and I felt really stupid by the time we left) and used his handy dandy power point presentation to explain why Aiden is exactly like the way he is.

I loved one of his informative analogies. He spoke about how in a "normal" person how the autonomic system does so much we never even understand. When we eat something and need to digest it, our human body will send up to a PINT of blood to our GI tract so it can oxygenate and help the digestion to work. Well when that happens the body sends a message to the brain similar as it would as if it LOST a pint of blood. So the heart begins to quicken, Blood pressure increases, and we digest our food. He explained how our body knows exactly how to react to everything it does, so we can survive. Well in Aiden's case, something even as simple as digestion is messed up. The pint of blood that goes to his GI tract, and this is suddenly missing from vessles.. is a bigger deal. His blood pressure doesn't know what to do! Up and down.. up and down. It is the way his body works.. or actually doesn't work.

In the office Aiden's blood pressure skyrocketted to 138/87 just by standing. His brain knows that his blood pools in it's legs so it picks up the blood pressure to keep it pumping back to it's heart. Aiden lays down and wham.. it is bottomed out. Poor body just isn't doing what it should.

BUT

we are getting closer with more answers on what to do.

OK yes the main line of treatment for Aiden's disorder is Betablockers, and other similiar drugs. But as we all know all too well, he can't be on these drugs because his heart drops too low and betablockers would make it wayyy too low, or stop. So, IF he gets the pacer then we can get the treatment he needs and his heart won't be in danger.

In the mean time while they battle out the idea of a pacer or not.. they are going to start Aiden on a second drug used to CAUSE fluid retention.

I know this is all confusing and weird and it sounds sort of crazy. But it is real! They are going to place Aiden on vasopressin. This is used for people with CENTRAL DIABETES INSIPIDUS.. (not diabetes.. this is different). It keeps you from peeing out all your fluids. Which we know is one of the things that causes Aiden a lot of problems. He can't keep fluids in his vessles. Remember the 1 month of IV fluids and Aiden being DEHYDRATED only moments after he was unhooked??!!

I am SOOOO excited about this drug I can't stand it. BUT.. of course there is a but... we have to make sure his nephrologist aproves.

SECONDLY.. Dr. Grubb agreed to the Valium for Aiden when he has the crisis's. The Valium will stablize the insane Blood pressure swings from scary high to scary low. (I think I will need the valium by the time this update is finished)

Have I lost you all? Is this too much?

I mean, It is one of the most complicated and involved diseases to have because it is a disease of EVERTHING. Heart, kidney, adrenal, pitutitary, lungs, vascular system, brain, everything.

Good thing it isn't a disease that is effecting his spirit and strength and energy! WOW this cold weather has been amazing! He hasn't stopped once! We are so blessed!

Aiden is looking great and feeling better than great! He has found a new obsession.. HOCKEY. Thanks to the wonderful friends we stayed with in Michigan. (pictures to come) I am just so happy to see him running and running and not tiring out again. That is my boy!!

On the other hand, tomorrow is the official day of NO more food. Not until Monday after his scope. Tomorrow and the following days will stink and I am not ready for it. He is already stressing over what he will drink and why he can't have anything to eat. How do you tell a 6 year old.. sorry nothing. Nothing to eat for days?? Ohh and take this miralax and have some diahrea! Ugh.. i feel bad for him, and I feel guilty. I guess it comes with the territory.

Anyway, tomorrow we are staying with our friends whose daughter is back in the hospital getting another round of chemo. She developed a very very agressive form of lymphoma after a rejection episode from her liver transplant. It has been horrible, but her spirit inspires me. Susan, her mom, told me she was running to the drug store to buy pink hair dye for what is left of her few hair strands. They are dying them pink before those fall out too.

You know, being gone, sitting in a hotel in a far away and non glamerous state, I can really turn on the pity party. I really could. I could sit and be miserable that I am not at some beach hotel on a normal family vacation, or I wasn't hearing terrifying details of surgeries and pacemakers. BUT then I remember kids like Heather. And I think, through it all... I can't make this journey we are on different. I can't stop that Aiden is sick. BUT I can see the amazing people I have been blessed to meet along the way.

THIS is real life. A big test. It is raining all over us. We are caught in a thunderstorm. Are you running fast for shelter? Are your eyes shut and you are getting out as fast as possible?? Or.. just maybe.. have you stopped, looked around and danced a little in the rain? Everyone has rain in their lives. Some people have more rain than others. I don't think it is fair. But it is still a choice. Today I chose to think of Heather, with her pink hair dye, in the hospital with chemo coursing through her veins, and chose to be inspired. I chose to say, if she can smile.. so can I.

Anyway, I am tired. I am ready to sleep. I am praying this hotel curtains stay shut, that NO sunshine peeps through waking my boys.. which in turn wakes me. This has been exhausting, emotional, and it has JUST begun.

THANK YOU for praying. Thank you for reading, and pretending that any of that rambling made sense. Thanks for being my friends. Updates will be coming in.. and tomorrow I will get a CD for the photos from the last two days.

In His Grip

Lisa and family

Friday, March 27, 2009 8:37 AM CDT

Taveling definitely lends itself to introspection. For me.. It lends it self to inspection of the guy in the drivers seat. I must dedicate a moment to a Joey ramble. I just can�t help myself. Yes even though we have been together for 11 years, when you are alone in a car trapped with him for this many days and hours.. you can't help but have new "deep thoughts."

Here we are, kids, dogs, grown ups and all of our paraphernalia in the minivan driving from the west coast of florida to the bottom of the glove of Michigan.

Again.

I realized that Joey is the most amazing awesome man alive for what he does. After unloading us very late wendesday night at his parents house, he sets the alarm for 3 AM. I don�t even hear the alarm, as far as I am concerned a bomb could ignite next to me, and it �aint happening. I am woke up gently by Joey about 1 hour later. He says, �Lets go baby, just bring your pillow and get in the van.�

Joey has loaded all the bags, carried both boys in their jammies to reclined seats, sippy cups full to the brim next to them in their cup holders. Heater on in the car, thermous of coffee filled after brewing it. I barely open my eyes, crawl out to the van and go back to sleep. Not one time does he �pull a Lisa� and say, �Did you see ALL I did, BY MYSELF?� He doesn�t complain he doesn�t gripe that until 7:30 in the morning when we are well past Atlanta, and heading out of Chattanooga TN no one wakes up. There Joey drives in silence, in the rain, doing it for us and never complaining.

THAT my friends is a GOOD man.

Now it is Friday morning, he is dressed ready for Aiden's appointment, ready to load cars, asking about the "plans" for the day. And I am just wanting to crawl under the covers of this very very comfortable hotel bed and not face the world.

It is amazing how Joey and I have been this way since the beginning of this journey. Aiden was 2 days old, the doctors came in and told us that something was very wrong with our baby. I sunk into a depression, crying, sobbing, hiding under covers and Joey stood up, grabbed some coffee pursued our specialist down the hall to talk about a "plan".

He has been ready for the attack and I have been wishing it away. Of course being a stay at home mom and having my son experience 19 anaphylaxises almost all with me, I have been forced to step into attack mode but it doesn't come natural. The first day after aiden was extabated in the ICU after his transplant, they asked me if I wanted to hold him. Aiden's stomach wasn't closed. They had to leave his abdomen open with just a gauze like material covering it because his intestines were so swollen.. I looked at Joey and knew I couldn't do it. I was so afraid of hurting him. Joey held him that first time, off the ventilator. 17 days of not holding my baby I wanted to so bad.. but I just couldn't hurt him.

My BABY is almost 7. We are heading to the doctor that possibly is the only one in the country that is able to understand my son fully. Joey, is dressed, bags packed, coffee downed ready to face the news. Talks of medicines, pace makers, surgeries and plans all just make me want to go home. I get so many pats on backs for "doing so much for Aiden" for being "so strong". If you all only knew! I do it because i have to. Joey does it because he can.

So that is my "Ode To Joey." installment number 28. Not too much making fun of him, (cause if I wanted to I could mention he is a freak about us NOT using fast food drive-thrus but instead going to the indoor counter so we don't waste gas. He also is a freak about checking the time we spent "out of the car" VS "on the road", then doing some strange calculation about how long it REALLY takes to get here. He is sort of a maniac about reciepts and 'conserving in these hard economic times'... and yes, he likes to challenge me by not shaving for 2 weeks just as a little kid would challange their mommy. BUT... BUT... he is a good man. quirky, superstitious, and currently nagging me so we can head out to the appointment to be there 1 1/2 hours early.)

Ahhhhh... nothing like a road trip to strengthen the Hawk Family bonds!

OK.. this afternoon I will have an ACTUAL update with news and photos and information.

Hang in there.. no more Ode's to Joey for a long time.

Love and nervousness

Lisa

XOOX

Monday, March 23, 2009 8:25 AM CDT

Well the past week was really fun and busy and this upcoming week is really nervewracking and busy. We will be leaving after work on Wednesday, bringing the two jack Russels with us in the car. We will do a pit stop in Georgia at Nana's and Babu's House where the dogs will vacation. Thursday AM we are leaving before sunlight and driving all the way to Ohio. Yes that is 13 hours if we didn't stop once. And believe you me.. we are STOPPING! Although I heard Joey tell the boys yesterday there would be peeing in water bottles and no stops at all. I hate to mention to my husband (who grew up with a house full of boys) that ummm girls don't pee in bottles. And even if we could we wouldn't. Just stop the car... freak.

Not to mention the first 5 1/2 hour leg of the trip to Georgia we will have Biscuit the wonder puker. I am praying to get a script for some Valium for him.. (me) and see if that helps his high "anxiety". Although I DO have to say, we have seen some hope in that puppy.. he is getting better and better, and I am actually kind of feeling "the love" lately.

SO... If you see a Kia Minivan loaded up with bags and kids and fast food.. wave as we speed past. We aren't risking any more catastrophies before this very important appointment. (if you remember we were re-routed to a new city .. in a blizzard.. with no bags.. with no rental vehicle.. with no clothes.. last time?) THIS time we will be in control of our destiny in the van and hoping it will be a drama-less drive. (no I didn't jinx myself stop thinking it!)

SO Friday at 11:00 we see Dr. Grubb. I am trying to find the right gift for him if you have any suggestions please stick it in the guestbook. His wife has an incurrable brain cancer and I know it is very tragic. I love this man even if I only met him once, and I want him to know that this matters to us. that he takes a moment away from her to see Aiden. (which is exactly what he did and that is why it took 5 months to schedule). I just dont' know what could ever say, thank you to him. (open for suggestions)

So Friday is the BIG appointment. Pacemaker or not will probably be discussed and possibly decided. Although Tuesday's appt will be also concerning this same topic. Dr. grubb will also help us with the medication adjustments and Dr. Perfect Hair's reccomendation for Valium for Aiden during his Blood pressure swings. (this scares me) I don't know what will come of this but I know I cry buckets thinking about the last time we saw him and how in my panic and desperation for help He stopped me in mid sentence, and grabbed my hand. He held my hand for 5 minutes and said, "He has Dysautonomia. He does. This is it. You guys found it. It will be ok."... I cried and cried there in that office as he gave us answers after so many years of confusion and worry. I love this doctor.

SO after that emotional journey of the appointment we have a hot date with a good friend of ours at University of Toledo. We are going to the ZOO! Sara and I have been friends for years now, and i can't wait to have a fun day with her and the family. After that, the social train other wise know as "the Hawk family" will be heading to yet another long distance friends house to stay! Saturday we will have a BBQ with more long distance friends and then leave for Cinci.

This is where it gets hairy. Aiden will then be not allowed to eat starting Saturday late afternoon, and not again till Monday morning. Yep 36 hours of no food. Just drink.

Monday Morning Aiden will have his annual follow up scope for his Eos disease. I am really nervous. I am praying it has gone into remission, and the symptoms we see are just upset stomachs and other weird things. I just know though that we need to know, and get a good plan together for his diet. I think we need to start from scratch and make sure he isn't getting foods that are causing this, and that he isn't missing foods that he could possibly eat.

Anyway.. so Monday will be procedure day. Aiden has already asked if he can have an IV in his arm and not use his port. I think they want to use the port but we will see. Maybe IV in arm and once he is under anesthesia they can access his port. This port has been such a terrible drama.

SO after no food for 3 days and then general anesthesia, we will take the poor kid to eat and pick out his prize from Toys R Us. It is what we do. Wouldn't you? I wish it was more, I feel really guilty.

Tuesday we will see Dr. Knillians the second fancy shamncy cardiologist of the trip and he will determine and work with Dr. grubb on "THE" plan for aiden. Pacemaker or not. I am soo nervous! I feel like the ultimate Munchousin mom wanting a pacemaker for Aiden. But People I can't sleep.. I have this fear always on the back of my mind about Aiden and his heart slowing dangerously low when he sleeps. I am not a "heart" mom.. I am a "liver- mom". I am in full denial that just because Aiden has 3 teams of cardiologists that follow him in 3 different cities that I am a heart-mom. I am committing to the liver mom mind and just sticking to it.

as an aside- when we were in the PICU a few weeks ago (she says rolling her eyes) the cardiologist come into the room and start throwing out words like QT's and Sinus and Brady and waves and bla bla bla bla bla.. I say

me: "Ok people slow down.. I am a liver mom! I don't know any of the words you just said."

the cardiologist looks at me and says, "You had liver for lunch??????" she was totally confused. Come to find out she didn't even REALIZE Aiden was a liver transplant recipient. OK MEDICAL PEOPLE... READ.. THE... CHART... BEFORE... YOU.... ENTER!

They expect me to know all about thier lingo and words, but didn't take the 2 moments to realize the big scar across his stomach is because he had a liver transplant. Argh. Did I mention I wasn't thrilled with this group?

Ok, so Tuesday we will see Dr. Knillians and then Dr. Kalfa. I am not sure if we will see her or just draw blood and give it to her. She is the hematologist who specializes in red blood cells. (Can we say ..SMART?)

SO then back on our frenzy homeward. While we are in cinci we are hoping to see our sweet friends whose daughter had a liver transplant but then recently was diagnosed with a very very agressive form of lymphoma. It has been so sudden and terrible. We love this family so much, and if you could please add then to your prayers it would be wonderful. Heather, Susan and Rachel, we love you!

Anyway.. so that is "the" plan. I am really hoping it is not for nothing and that this trip helps us make a better future for Aiden. I hate the thought of it, but we have no choice. Since we started going to Cincinatti so much has been answered. So much has changed. I am so thankful for their communication, and how much they have helped our son. We have been fortunate to have so many places that have participated in the care of our son. We have moved to a new leg in this journey of Aiden's health, but will still can never forget the wonderful nurses and doctors in Atlanta that helped give Aiden this second chance at life.

Who would ever have thought so many miracles, so many wonderful blessings from God? We will be missing a few baseball games which has made Aiden the most sad, I think more because it is when he gets to play with his friends and be a regular kid. I hope this trips allows for more days of just normal. I know we are on the right path. I know we will have the perfect treatment for our son. I believe in that miracle, and that cure. Believe with us.. pray for him, and I will update with lots of updates this week. Stay tuned!!

Love- Team Aiden

ps/ pics coming this afternoon...

Thursday, March 19, 2009 4:48 PM CDT

ok seriously I ask you to pray that we have some more things to laugh at.. and then BAM... God gives me laryngitis. Seriously YOU know HE has to have a sense of humor now.

Me?

Not talking?

The Bible talks of plagues of locusts and blood in the water.. I correlate those horrific plagues to me... not being able to talk.

A hem... A hem.. let my fingers be my vocal chords. Where should I begin? Once a pon a time a long long time agoooo.......

Just kidding.

So no more than 2 hours after typing that we knew nothing about Aiden's schooling, we finally hear something. And in completely dramatic style I was told I had only 24 hours to make a choice. I knew he would get into the two schools I wanted for him. Now it was up to Joey and I to make this difficult choice.

After lots of praying and getting opinion for family and friends. Getting a tour of the facility and just falling in love.. we chose a school for Aiden.

Currently now, by the grace of God Aiden is enrolled in the fall for his 2nd grade year at Bay Point Elementary. It is a Math, science, technology and foreign language magnent school. As of now he will attend one day a week, and co enroll in Hospital homebound. As we feel more and more comfortable and as his health improves, he will attend more days.

I can only tell you that Aiden is SO psyched because they have a lego mindstorms club, and a young astronauts club, as well as Earth Force, and guitar club! The Astronaut club makes their own rockets and launches them. It is a very hands on school, that can allow for a high acemdemic atmosphere with lots of fun too. I am just so happy.

I have shed a bucket of tears of joy over this.

If I had a voice you could hear my shouts of gladness.

love to you all.. I will update soon. We leave for Ohio in just a few days, IN the mean time we are having a blast with the Vincent family.

Love
Lisa

Tuesday, March 17, 2009 10:12 AM CDT

Well we have so much going on here. It was like we had this yucky admission to the hospital and the first foot out the door was running to the next event. Baseball, school, homework, playdates, birthday parties, etc.. just seem to run my life right now. It is actually a major blessing in disguise! We now are so thankful because Angel Haley's family is here in St. Pete on vacation, so we have a week full of fun ahead of us with them too.

I found out more about Aiden and his school lists.. he didn't move up on any of them yet. So this should be interesting. The plan though still is to co enroll him in hospital homebound and part time (maybe one day per week) in school. It will all iron itself out by the end of summer. Knowing our family it will be perfectly figured out the DAY before the first day of school. Keeps us on our toes.

In other exciting news, an application was presented to Aiden for a second wish from a wish granting organzination. With all of this new diagnosis, his doctors and his teachers have encouraged me to look more into it. I can honestly say I think it is great! I don't feel bad anymore about things like this. I would trade one Wish for a lifetime of health and no worries. It is a blessing that organizations want to help kids who have suffered and had life sort of taken from them in the sense a normal child would live. I think they are angels on Earth. And I am happy that something like this might make Aiden feel better on the days he is questioning "why him."

The other day Aiden had a friend come over to play. It has been hot here, and now effecting Aiden. The rode their bikes 3 houses down, and Aiden had to stop, to catch his breath. He got off the bike, beet red, and grabbed his chest. I wanted to cry for him, because he began to say, "can we go inside? I am too hot". Oh my gosh it is ONLY 75 degrees and he can't cope. His baseball game on Saturday Joey told me that he was so amazing. Pouring water all over himself and using his water mister.

Anyway.. it is rough, we are nervous we are leaving in 1 week to go to Ohio. I am just so nervous to speak to Dr. Grubb and hear what he has to say. I do feel incrediably confident that he will know what to do. Pacemaker or not. Med change or not. His nephrologist (dr. perfect hair) is pushing for Aiden to receive valium on days his BP is so bad. Also more IV fluids. Valium scares me, I imagine his heart rate dropping more.

Aiden is also getting scoped lower and upper Gi next week in Cincinnati. They are looking for a reoccurance of his eospinophillic disease. I am pretty sure it will be there still. what to do with that would be beyond me. I can't imagine him doing those steriods like last year again, poor buddy.

So with Toledo cardiology/Grubb then cinci's GI/ Liver we will also be seeing His cardiologist there. I think that will be helpful and I suspect they will want to remove the heart monitor they placed 6 months ago. They have told me they want to put it back in him but in a different location but I am for obvious reasons opposed to that. That is too much for one little boy. I just can't bear to think of all these surgeries and procedures. He isn't a pin cushion. of course no one in his care thinks that.. they are all amazing and looking out for his best interest.. but I can't help but just want to scream sometimes because we don't seem to be getting anywhere fast.

ANYWAY...

I noticed recently. I am not funny anymore here. I was reading the journal history just skimming for self misery and realized.. i used to be funny. Making fun of Joey in dorky sweaters and how he must carry all the groceries in one trip even if it ment strapping them to a stroller and ever body part. There used to be so much more laughter, but now I am feeling pretty tired.

It is like a writers block.. on funny things. I mean there are plently of nutty crazy funny Hawk stories I could share. But after telling how my kid can't barely walk outside, I have a hard time cracking a joke about Joey's newest quirks. And yes people there are many. Many new consipiracy theories coming from my husband. But I digress.

I guess if I could have a prayer request, can you just pray that our laughter keeps resounding louder and greater than any frusteration or worry. God has been so good to us and Aiden has been stable from so much. Worry gets us no where, but sometimes is consuming. I hope next week when we see these team of doctors that care so much we will find some closure and some more joy.

I will say something that makes me smile and roll my eyes at the same time.. Aiden has seemed to discover his muscles. Yep. Now it is all about the Muscle shirt, looking into the mirror, and him saying, "welcome to the Gun show".. as he shows of his arms.

There is one thing I can say about this kid. He doesn't suffer from low self esteem! Just last friday he went to see his best girl read her story to her class (Hannah) and while all the kids were in line to leave the lunch room, Aiden pulls up his shirt, shows them all his scar and proceeds to make his scar sing the "chicken dance" song. The look of horror from the girls/ teacher, and the cheers of approval from the grossed out boys was HILARIOUS! My friend was sitting with me and we just clasped out hands over our mouths screaming.

Aiden said, his scar is like criptonight to the bad kids. I love that kid! I should take a video so you can see. It is pretty ridiculous.

Anyway, have a good one.. And let me just say.. WHY ON EARTH does some "flowers from India" people keep spaming my website?? I mean How nice can flowers be all the way from India?? And why do they think ANY OF US would ever actually check out their link and order some?? This is a crazy world.

Singing the chicken dance song,
Lisa

Monday, March 9, 2009 5:34 PM CDT

Dysautonomia: I guess being that this whole thing is so complicated I rarely discuss it but I think it is time. I think I am fully ready to promote some awareness of the illness that has effected our lives so deeply.

CLICK THIS LINK FOR A BRIEF ARTICLE

Dysautonomia is SPECIFICALLY a disease of the AUTONOMIC NERVOUS SYSTEM.That means all the parts that work AUTOMATICALLY.

Think about the things you can NOT control. Like no matter how hard you work at it, you can NOT make the blood pump or your heart from stopping beating.

EVEN breathing. You can hold your breath.. BUT eventually you will pass out and your body will "automatically" breath for you.

You can't tell your brain to stop sending out hormones and signals.. but instead your body does it naturally. It is amazing how much our body does to keep us alive.

AIDEN has a rare form of autnomic failure. ALL of those things, don't work. He doesn't sweat or cool or heat himself when he needs to. This in itself is HUGE. We take this for granted but it keeps us from overheating and hypothermia. Aiden's body doesn't regulate tempature, blood pressure, and even the fluids in his body.

Have you ever heard that the human body is like 75ater? Well I am not sure about THAT, but I do know water in our body is what keeps us alive. The Blood coursing through our veins isn't JUST red cells, white cells, and plasma. There is WATER in there. (and LOTS of it!) Our veins are like little garden hoses, they shoot the important cells and water from tissue to tissue, like little highways of health.

Aiden's garden hoses (veins) have holes. Lots of 'holes'. So we have to PUMP up the water pressure. We have to turn it on full blast just so there is water in his vessles, going to his tissues. He has to get SALT! Lots of salt. Because Salt makes you retain fluids. (believe me when I weigh in after a salty meal I gain weight!) But for aiden.. that is GOOD. That means he keeps it in his body, and not in our potty. :D (that rhymed) Aiden also gets a special medicine called Florinef This is a drug that also makes him hold on to that water even more. You can see just how important water is!?

Dysautonomia is a big word that means lots of things. You can have simple levels of this disorder where you faint a little or to the other extreeme you can be completely debilitated and unable to walk or function. It can effect your organs and your daily life or it can go into a natural remission. The road ahead for Aiden is unpaved. He is unique with this. Because his specialist said he doesn't fall under ANY of the catagories. They suspect over time as his symptoms become more clear then he might fall more into a classic diagnosis.

We are getting closer to figuring it out.. but one thing we know is that water is his fix! Fluids fluids fluids. He takes high levels of salt and drinks more than most people drink in 4 days.. in one day. Sometimes that STILL isn't enough and he has crisises and is admitted for fluids. This happens a lot.

SO when Aiden has a "crisis" he has a lot of things happening... and this is why he is admitted. 1) his heart rate both drops dangerously low and it sky rockets very high. 2) his Blood pressure drops dangerously low and sky rockets very high 3) He goes into a fight or flight and all that fluid we try so hard to keep in his veins just dumps out in a moment, this is like a transient Diabetes Insipidus 4) He usually falls out of consciousness or if at best is extreemly sleepy 6) His red blood cells, white blood cells, platelets, and eosinophils sky rocket due to either hemoconcentration or a stress induced reaction 5) his adrenal gland stops working and he has an Addisonian crisis

So this is the deal. To the generic person this sounds pretty crazy. I litterally can say, "The weather change put him in the hospital".. and it is true!

The more we know about this diagnosis the better we can treat him. We are driving (or flying?) to Toledo to see Dr. Grubb to discuss the danger of Aiden's heart stopping or slowing or whatever it does. We have a great group of doctors that are not ignoring this, but we also can only do so much at once. If we did everything at once, we would never know what worked or what failed.

IF you are not new to this site and you know me in the slightest, You know I HATE talking about this stuff. I don't like to focus on the sickness or anything negative to be honest. I Am posting this update just so you all can better understand the thing that has taken Joey, myself, and his local doctors this long to understand.

Now maybe if you know anyone that has this diagnosis, you can support them and love them even if their disease is invisible. You wouldn't believe how many of these teenagers I have read about are not believed, until they are in a wheel chair or can't get out of their bed.

Anyway, Not the most fun update, no big stories about the boys and baseball and mason and his french man's hat. But I guess, since this caringbridge page is a medical journal I SHOULD include one tiny medical update.

THANK YOU for all the prayers and love and well wishes. Aiden has been moody and cranky and I know he is frusterated and not understanding why things happen like this. I am just so proud of him though. He is so wonderful. Inspite of it all... he has forged on and kept his chin up. And ok.. well I do have one tiny brag... here is Aiden's Honor roll certificate he recieved thursday. He got this moments before he was admitted. He was so proud, I just had to share.

God bless and please be and organ and tissue donor.

Lisa

SUnday 8th 2009 7:25 PM CST

Sunday AM

Home and a good night sleep. Aiden is doing good! (vitals are the same) Joey woke up first, made coffee and chocolate chip pancakes. It looks like it will be a beautiful day today.

I feel some bike riding, and baseball in our future. I just wanted to say thank you for the scripture, the prayers and the kind words. Now that we are home and back in our la la land... lets remember those who haven't come home yet, who are still there all over the country.

Kenya, Emerson, Devin, Shelby, and those angels we have lost.

Go enjoy your day... I know we are! God is so good.

Love,
A rested Team Mom.

Ps/ thank you soo much to all those who have just helped SO much with Mason. That little guy had a BLAST this week. ANd thank you for the Karges family for taping him at his music performance and then bringing us the video last night so we could watch it. I laughed so hard through our tears.

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

Sat Afternoon

OK.. so the kid who needed to go to the ICU because he was so 'unstable' is going home.

his heart rate drops alarmingly low. I swear I think I just updated this the other day, that is you look at his vitals and labs you know there is something very wrong with Aiden, but you look at Aiden and he is ok. I am not saying that he is healthy and normal, but I am saying that we are working on it. Yes maybe I am in denial. I don't care. I really don't care. Denial is how our family copes sometimes and people look at us and can not possibly fathom how we do it. We do it because we HAVE TO!

I am just all over the map with emotions. I am relieved, sad, angry, frusterated and concerned. I am thankful and joyful yet tired and exhausted. A very nice cardiologist with a name I can not pronouce came in and said, that Aiden's heart "sinus" is effected but it recovers well. I am a LIVER MOM! I HAVE NO IDEA WHAT Q's and Sinus'es are. I guess they are concerned are very concerned of him crashing or having his heart just Give out. With out better terms. NOT though because he has ANYTHING wrong with his heart. But instead his BRAIN is telling his heart some mixed up signals.(dysautonomia) He lays flat his heart rate drops about 40 points in 1 minute. This it seems isn't great.

i am in such a deep denail that I just don't even want to post about this or talk about it. I just want to go home, and go back to our normal routine.

So we are. We will be seeing Cardiology/ electrophysiology This week in the office. Then we will have lots to discuss in Cincinnati where we see his specialist that understands more than anyone how the dysautonomia poses a threat to his heart/ body.

YES it is my biggest fear that one day in his sleep his heart stops. I never ever ever ever ever talk about it. I am devastated that I just spent 30 hours talking about it. It is time to decide on a pacemaker and not just talk about it anymore. I can only hold on to my denial as long as I know I am doing everything I can for my son. Right now.. I feel like we need to fight for him again.

I know this update is diSointed. I am in a family waiting room between ICU and oncoloy. There is another family speaking kissing and hugging and crying while I type this. I can't think.. I can't focus. I can only keep saying, I want to go home, take a bath, lay with my husband, and just make this all go away.

Please pray that God has His divine plan rolling. I just want this not to be a coincindence that we are going to see his specialist in toledo/ cinci in 2 weeks. I know that God had this all planned out. Pray pray pray.

Lisa

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

Saturday AM Update

OK Still in the PICU Aiden had a rough night, his heart rate stayed in the 40's! Even though he has had 3 days of IV fluids pumping in his veins. I would find every excuse to wake him so I could have a repreive from the God Awful Alarms being set off on his machines. I Hate the ICU.

Anyway, I am hoping that they either give my son a pacemaker or they send us home so we can pretend that he isn't living in danger every night of his life.

You don't know us, and surely aren't in my home at night.. but let me promise you, that night times.. we hear one cough one deep breath, I scream, and Joey goes running. I am too frozen to even look. This has been this way for years.

people say to me, "You are so calm." or "I wouldn't be able to sleep at night"... I just LOOK calm and I no one in my home sleeps at night.

I hate being in the hosiptal not knowing what is going on, what they think, what they want to do. I am not used to a team of doctors that doesn't communicate. I am done though coorperating, I need some anwers.

Sure, on the phone with my friends or yesterday's visitors I was laughing off the fact we had this amazing "healthy" child in the ICU... but believe me, when everyone went home, and it was me, his full time nurse and those alarms.. ALL NIGHT...there was no laughing.

I am honestly scared. I don't like this. I just want to go home and be back to normal. or just be normal.

I have no computer for some reason it isn't connecting to the interenet, so this is the computer on oncology. I will update later when I can.

In His grip!
Lisa

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

FRIDAY NIGHT below

OK so we are still in the hospital.. Aiden is in the PICU. He is feeling fine, everything is ok. It is just that a new set of cardiologist, electrophyisiologist, and one intensivist looked at his heart rates, and pressures and decided that he needed 100onitoring. And when I say monitoring I mean it. (over kill) he has the loop/ event monitor implanted in his chest that he always has, he has now a holtor monitor, and then the EKG, ECHO and other continual monitoring of the PICU.

This is very hard for me. in one second I am feeling like this is ridiculous then the next, I feel like i am in a sureal panic. Soon after that I am just feeling guilty that we are in this room, with so many super sick kids surounding us. I just think of the old days in PICU, the times my friend's kids were there, and the ones who I love that are currently there. I hate this.

I just wanted to say, I hate liver disease. I hate dysautonomia. And I want my son to be playing in his baseball game in the morning, not in a hospital.

It will all be ok again soon, and we hopefully will have a better plan, better answers and maybe some more information.

I want to thank my sweet friends who have called, and come to visit. Aiden loved your visits and I needed it too. I will be heading to the cafeteria after this, searching for just the right chocolate bar, and sitting in my own little corner of the ICU day dreaming of being home and "normal".

One positive (or maybe negative depending on which side of the glass full you are on) is that the numbers that are scaring them and making them put him in the PICU are the same numbers he has had for 3 1/2 years. I guess they are finally really paying attention. Maybe they will do a pacemaker after all. We will see.

Anyhooooo I am unable to facebook all night as my computer has decided to completely act up... so now I am suddenly feeling like I am truely being tortured. LOL ok that was a joke. My pediatrician says, "You use laugter as a defense mechanism"

I say she is right. Better than crying!!

Love and hugs
The Team Mom

Thursday, March 5, 2009 1:57 PM CST

Aiden is in the hospital. It is the dysautonomia.. his blood pressures have been everywhere.. 150/100 to 80/35. He is sleepy, and feeling bad. In a moment he just covered in welts and rash. It is all dysautonomia. He was sick to his stomach, had explosive diahrea, etc.

So here we are. we got labs, and his port has been accessed for the second time this week. They are running fluids and did doubled the steriods. Hopefully he will back to his normal self.

With this disease of his nervous system, things like weather changes can trigger this. His hypothalmus can not regulate his body tempature like normal people, so yesterday we went from getting over heated during the day to standing outside freezing at his baseball game. The messages to his brain just get mixed up, blood pressures, heart rate and his vascular system react. When we went to his doctor this morning his urine was soo dilute it was like water, all of the neccesary fluids his body needs to work were being pushing out of his vessles and urinated out.

His body doesn't work right. The type of dysautonomia Aiden has isn't limited just to blood pressure, it effects his vessles and organs. I was just reading recently about Greg from the Wiggles (kids' show). He has Orthostatic intollerance.. this is a type of dyautonomia where all the blood pools away from the heart into his legs and his faints, looses conciousness, can't walk, etc etc... This is what happens to Aiden, plus some. Plus some.. plus some. Greg had to leave the Wiggles and I remember thinking how sad it was then because he was one who produced and wrote almost all the music.. but now I just pray for him, that his OI is under control, that he can dance again.

"He looks great."

read this:

http://www.dynakids.org/Documents/DebbieDysautonomiaArticle.pdf

It is an invisible illness. You can't see it, but if you take one look at his labs, his vitals you know something is wrong.

His team of doctors have worked so hard to give him medications to help his systems that don't work well on their own. Florinef to help his vessles stop leaking out the water he needs to live. Steriods so his adrenal gland stops his body from going into a flight or fight reaction and a crisis. Fluids, high levels of salt to keep his blood pressure more stable. ZOfran so his GI tract doesn't dump more fluids out of his body. Aiden has been doing so much better over the past few months.. I mean soo much better. We will get this ironed out, it will be ok.

I just hurt for my boys, this morning was hard.

Anyway, I will update if anything happens or whatever.

Lisa

ps/ about 1 year ago I found another website with a girl with Aiden's illness.. she is a college student but on her page she has a blinking gatoraide and this cute little blurb.. I remember it making me bawl because finally someone was like my child. I just re-read it and thought I would post it. If you have followed this page you will see how much this is like my son:

You know you have Dysautonomia when...

Your parents tell you to drink before you drive. (drink drink drink)

You are commonly mistaken for Casper the Ghost. (pale then red)

You carry salt packets in your purse.

You hear a truck backing up and think it's your pump beeping.

You have tried every flavor of Gatorade.

You tell people that you have autonomic failure and they recommend a good transmission repairman.

Physics is your least favorite subject because you hate gravity.

Your doctors send you Christmas and Birthday cards.

You make Jell-O shots with Pedialyte.

On a date, your heart races even if the other person is ugly.

The IV team says they like a challenge�until they meet you.

You are very patriotic and can turn various shades of red, white and blue.

You can read your own echo's and EKG�s.

Your latest embroidery project is a wall hanging proclaiming "God Bless Zofran".

Medical students ask to borrow your notes.

You use your insurance card more than your visa card.

You are blood doping and taking speed or narcotics...legally.

You've been home from the hospital for two weeks and are still measuring your pee.

You're thankful for steroids because finally there won't be leftovers after Thanksgiving.

Monday, March 2, 2009 7:55 AM CST

A bit of advice for anyone in my shoes:

IF you have a child who is sick and you want nothing more than to help and take away their sadness...

IF you have a child that is fearful and in pain, and you just want to lift their spirits...

If you have a child that had yet another surgery and your guilt is overwhelming and you can't do anything for them...

DO not..

and I repeat...

DO NOT

Get a puppy.

Because IF you do... you will be finding your self

- Daydreaming of time travel that would allow you to pick a different one in the litter. (I KNEW that small little female should have been the one!)

- replacing pillows, shoes, even furniture

- owning stock in doggie rawhides and chasing puppies down the street shaking the bag screaming... "CHEWY CHEWY CHEWY!!!!" (yes and this includes in your Pajamas)

- placing brooms at the back door so you can shake it at the insane puppy that is barking at the trash can. (the broom is the only thing that he wants to eat more than the trash can)

- talking to the OTHER dog and saying, "I never knew how good I had it with you."

- avoiding neighbors because you KNOW they just want to talk about that crazy dog you got.

- emaling the Dog Whisperer

Yes folks.... Biscuit is the delight of our home. I just have one question... HOW can one dog that small have SO much fur? I must sweep my house 3 times a day.. it just floats in the air. I keep thinking, if we get Aiden's port removed, can we take back the puppy? We did get it FOR the port..

In all seriousness... If you can believe it, I actually got a few emails asking about Aiden's precious little puppy. Enquiring minds want to know.... well, I will tell you. I can't wait till this puppy is no longer puppy.. and he is Dog. I see glimpses of good. I see it in there, just don't have eye contact, or you will be pounced on.

of course I am kidding... We love Biscuit. He fits right into this house. We are all a tad nutty here. Aiden loves that dog SO much. We watched "My Dog Skip" the other day on TV and I could see the same bond those two have made. It is pretty ridiculous really, We can't walk into the house with out it being some big reuinion.. "MY BABY!!! I LOVE MY BICK BICK!!!"

Dog Obediance starts next month. Aiden will be the junior instructor (aka, watching while I get my arm pulled out of socket in the class)... I will surely get photos so you can see the star pupil in his finest.

Speaking of pupils....(students, not the eyes)

I have been calling for the past 1 1/2 hours to find out what will happen with Aiden's school placement. (busy line) He is on the list for several schools, and we are still considering the homeschool/school.

I know we will still do the hospital homebound but this would be for co-enrollment. I just have butterflies in my stomach thinking of his first day in a real class. Even if it was one day a week, we just want him so bad to have that oppertunity.

So while we wait to know what is in store for Aiden, I will leave you with the a little tiny video clip. The boys love this one because I of my annoying "WHOOOOOOOOOO!" I make in it. They say I sound like Elmo. I don't hear the Elmo.. but it makes them spill over in giggles when they watch it. I am so glad I am such good entertainment for my boys. (always the brunt of the joke here)

ANyway... Batter up! Here is our miracle, playing ball. Did I ever mention that when he was diagnosed at 6 weeks, my first question was, "Will he ever be normal and play baseball? I just want him to have a normal life..."

It may not be normal, but it is so good.

Chasing dogs and baseballs,

Lisa

Sunday, February 22, 2009 12:11 AM CST

Things still good. Things still stable. Will I ever get tired of saying that? Never!

We have our next big trip planned. Aiden is seeing his fancy shmancy Dysautonomia doc in March in Ohio. We will also be going to Aiden's transplant center in Cinci for check ups, follow ups and possibly another endoscopy. His eos are the only thing that have just been really out of control. I am not willing to really even consider the steriods like last year unless we adress food adjustments first. So we will be doing lots of allergy testing, and other things related. He will see his cardiologist in Cinci and the hematolgist to do a special test on his eosinophils. I am not sure how we are getting there.. nor who is coming.. it is possible it will be just me and Aiden or it will be all of us. We just have to see how long and how many procedures they will line up for him.

In anycase, it is all good, and we can't help but feel so greatful for this time.

In other news we had a "romantic" Valentines. If you consider Bubba Bugers, two screaming kids, and a park ranger kicking us out of the park romantic. It was sweet though, Aiden and Joey has it all planned. Just didn't consult me to ask which beach park closed at sunset. Oh well.. We did get to spend some time together, watching the sunset and enjoying that amazing view.

This week we are just thanking God for all we have been given. I don't ever want to fall into the trap of just begging God to work in our lives. Asking Him to heal Aiden.. but never thanking Him when we have so much peace. It brings tears to my eyes thinking of the pain some of my friends have suffered after losing their child, and I just can't stop dedicating my days to honoring them and counting my blessings. Do stupid things get me overwhelmed? DO things like money or time or what I am cooking for dinner consume me? Or am I always (not just when the chips are down) remembering how blessed I am?

We lost ANOTHER child at our liver support group. We have another one who just had a stroke and brain damage. My best friend is planning a memorial service for her daughter. One that she can remember, one that continues to honor her daughter. This is a scary life. A tough life. Kids are diagnosed each day, while some are losing their battle. I am so heavy hearted for them. I have to remember to not sit and wallow in my small stresses but learn from them and hug my children and hold my children.

So with that, I wanted to share a little about my May May... just take some time to tell you how much I love him.

He is getting so old. I don't talk about him as much here since it is Aiden's page. But thankfully I can since Aiden is having such a healthy streak. Mason is SO different than Aiden. In so many ways. He is way more quirky like his dad. (yes Joey is quirky!!) He loves wants to be Batman and an astromaut when he grows up. He loves the color blue, and will always pick anything blue when you offer it to him. (ie- eats all the blue skittles out of the bag). He is still in therapy weekly, but thankfull we do a 1 hour session only once a week. They focus on some food/ eating therapy but mostly physical therapy. Jumping with two feet, tummy work and back work, as well as balance. To see him I can't get over how well he has done. He is still weird with food. He has no appetite and is mainly formula fed. 1100 cals a day of his pediasure (aka Teddy Bears) and then some bites of food here and there. It is so weird, but we are working on it. Precious cute syndrome is hard to figure out. I think he is growing and I need to take him in to see. Mason is so funny. He talks and talks and talks. The other day he asked me the most HILARIOUS questions.

as he was on the potty

Mason: "Mommy, what is your favorite "potty" to potty?"

Me: "Huh??"

Mason: "Pee pee or poo poo?"

Me: (trying to think of the less gross answer) "Uhhhhhh I guess pee pee???" I stammer smiling at how funny this question is. "What is YOUR favorite 'potty' to potty?"

Him: "Pee pee!!" He clearly had been thinking about it a long time.

I can't wait to watch him grow and develop more. He love to dress up.. he insists on wearing two different shoes almost daily... and the wild imaginiation! I love BOTH of my boys and want you all to know, just because Aiden has a website, just because he is sick.... Both of my children take my breath away (stinky feet) and both of them make my heart overflow with joy.

Give your family a hug today and if you are married... go rent FireProof the movie. It is pretty profound

have a GREAT week,

Love The Hawk Family

Thursday, February 12, 2009 7:56 PM CST

The fundraiser was a huge success. More than we could dream of! Not only that, but one of the items we auctioned went to a very dear friend, one who I speak of wayy too often, Cheryl. Their family was the highest bidder on a week at the beach here in St. Pete. Seriously, I was so overwhelmed by everyone who partcipated in that as well as the raffle fundraiser. Not to mention the amazing, sponsors and donors. We are so blessed. And there are some amazing things ahead. Stay tuned. I just can't believe some of the things that are happening here. Maybe Aiden will be so healthy I can just shut down this site! (uhh ok I was just kidding) But seriously things have happened, and I just don't want to annouce anything until we have some medical back up.

So with that... everyone around us (including precious little members of our family- Mason) has been sick! Fevers, puking, rashes.. you name it, it is floating around St. Pete. SO, say an extra prayer that Aiden can manage to remain healthy! I just am loving this streak of no hospitals.

Things are great. The boys are growing older. I can't believe we are having Aiden's 7th birthday soon. Is it just me or does that just sound incrediably old?? SEVEN? Oh my gosh. And Mason is 3 1/2 and now signed up for 3 days a week preschool in the fall. Where are my babies?? We got muddy cleats in the house, with baseball starting. Batman masks, and super hero capes everywhere. It is a boy fest around here, and I never saw it coming.

Recently Aiden lost another front tooth. I pulled out our camera and thought, I would just take some shots of him with his tooth missing.

Of course it was so cute, so I hit record on the little video gizmo on the camera.

And THIS is what I mean by a Boy fest:

Tell me, why is it that they just CAN'T stand still?

Doesn't Aiden look good? People are coming out of the woodwork telling me how good he looks. I want to cry thinking about how he was this summer. I think now that it really feels like it is over, that I can really focus on how bad it was.

unable to walk just short distances, Joey carried him around.

On his super special day at the Great Smokey Mountain railway, there was only moments he could enjoy. I would look at him and cry, it was so so painful.

I remember sitting in the engine, all his dreams coming true, he sat in that drivers seat, and he could barely breath.

I will never forget this day, it was in the mountains, and we got a cool breeze. We sat by a rambling river and Aiden came to life. When you can't sweat and you can't cool.. you feel like you are suffocating. Aiden, finally felt some relief and the minute he did, he was up and showing us his spirit.

Aiden was back in the hospital for this photo, not really getting out of his bed, we would lay there and take silly self photos. SOmtimes of our toes and sometimes of our food on the food tray. This one is my favorite, me and him, fighting this beast together.

Mason's first day of school.. a thing Aiden has never got to do. Aiden was so over joyed for his baby brother. We kissed Mason good bye, and I will never forget that yearning I had for Aiden. Now.. today, Aiden is on 3 lists for next fall for starting school himself.

If you are new to this site, you must know Aiden is having a miracle. We won't give up hope that he will be healed. We can not forget where we have come from, BEACAUSE OUT OF THE ASHES COMES BEAUTY!

Aiden 3 days ago with the valentines glasses he got in his mailbox from Make a Child Smile.

BELIEVING,

Lisa

Tuesday, February 3, 2009 12:10 AM CST

Mason's MRI went rather smoothly, all the build up emotionally just taught me one lesson... Don't schedule a procedure that far out. Too much time to think and worry.

Anyway, I have just heard the results:

THERE WAS NO CHANGE!

Both cysts are there, but neither grew!! This is excellent news, second best to the little things just dissapearing. We will be meeting with his neurologist on Friday the 13th. Of course. He will do the exam and review his labs and MRI with us there.. but the inside scoop is good news. so Hooray!!! Now hopefully we can wait 1 year to retest. PRAY!

Aiden is still doing wonderful. He has been so stable. People, DO YOU REALIZE HOW CRAZY THIS IS????? I mean seriously!!!! The odd chance that lowering the prograf, upping the florinef, seems to have actually worked! Ok this is not some official annoucement, I didn't get any formal notice from any doctors saying this so don't hold me to it, but as his mom.. this kid is doing really really amazing.

He still has dysautonomia. We know this because his blood pressure has been creeping up over the last 2 months and his headaches are daily. But we never thought we would come off the meds, so it isn't bad news. Just to be expected. We also know he still isn't sweating normal, and cooling himself, but hopefully this can adjust over time too?? I dunno.. I am making that up. But the good news is, he hasn't woke up and collapsed vommitting in over 4 months!!! This is like a miracle to Joey and I. This is sooo wonderful. He did have tachycardia last week where his heart rate jumped to the 160's for no reason. (well HIS reason was that his brain was so used to him playing the Wii it forgot how to send the blood to his heart. His brain was sending the blood to his fingers. seriously.. this is what he thinks)

I know, I know.. most of you (you know who you are) are sitting there cringing... you are thinking .. "LISA SHUT UP! YOU ARE GONNA JINX IT!!" I don't care. I am NOT gonna jinx it. I am just giving God the glory. This is how it is, we have to say it.. after the last 3 years we have spent nearly every other month, and sometimes every other week in a hospital. Right now my son is on less medicine than he was 2 years ago, he is running and playing harder than he has in 8 months, I can't help but just do a big "shout out" to God for this amazing break.

I am no dummy. (don't snicker) I know that he is still a transplant patient, I know that there are bumps along the way, I am just saying... these last few months have been so wonderful. It is too hard to describe.

For the first time in his life Joey and I are milling through school brochures and dreaming of him being just a normal little boy. For the first time in his life I am dropping him off at Sunday School, heading to church and when that little number pops on the big screen, I don't panic. I look at the number, feel a flutter that it could be his, and then sigh a relief that it isn't. Baseball season is starting and for the first time ever I am thinking about NOT sending that big dumb email to the other moms saying, "warning, Aiden misses a lot of games due to frequent hospitalizations.. bla bla bla..." Maybe he won't. Maybe he is just better? Maybe.

I know I am going overboard. He was just admitted last month for 5 days, but bear with me.. I am an eternal optimist! I can't help it! (my fave quote: "I have a terrible case of optimism and it IS contagous")

Anyway, so that is the deal. Today we celebrate the small accomplishments of some normal time. We will heading to Cinci next month for his check ups and testing with cardiolody and dysautonomia dude, as well as GI for the eos stuff. And hopefully I can get the official, "He is getting better" and it ya'll won't be afraid of the big "jinx".

SOOOOOooooooo

Well, I am sitting here thinking, "what is that nagging feeling?" Hmmmm what could it be? OHHHHHHHH yeah. Now I remember. On Saturday I will be hosting a huge fundraiser for Aiden. All proceeds will go into Aiden's transplant fund so we can FINALLY put some of that money back in. Last year was INSANE. If you only really knew... looked at the bills, seen the amount of insurance claims I get EACH day in the mail, (sometimes I will get 30 E.O.B.'s in one day) then you would understand. It is insane. SOoooo.... Saturday, we are filling up my neighbors house for a Girls Night fundraiser. We are raffling items, eating yummy food, and just celebrating this amazing time of health for Aiden.

In other news, Joey is officially coaching Aiden's baseball team. Yep, this means in the next couple weeks we get to see pictures of Aiden and my adorable husband all decked out in B-Ball wear. Aww how cute. Since Joey is coaching he got to pick the Team's name.. of course he asked for the Ray's but I think it was taken so our team will be the "Brave's" wink wink... Get it? Brave's? You know for Aiden- the Brave?

We long history of being Brave's fans. (ahem Go Cubs!) Well of course Joey DID grow up living on Brave's Baseball, being from Georgia, and yes yes.. I will confess for Joey's sake, He did even play summer ball with names that ended up playing pro ball, like John Rocker. Joey likes to remind us "I hit off of John..." Yes Yes.. these are HIS version of "When I was YOUR age, I walked to school up hill, both ways... etc". Then another reason we love the Braves is, well Aiden was transplanted in Atlanta and we just will never forget how they let the kids walk on the field at the Brave's games, meet the players and have transplant day. It is super special. THEN there is < href=http://www.caringbridge.org/ga/haley>Angel Haley who SANG the national Anthem at Turner Field. That kid was something special! So to sum it up, it should be a good season. Let's Go Braves!

That makes me smile.

God bless the little things in life. Really. Sometimes that is all we have isn't it? Who would have ever thought when I was carrying Aiden in my belly that he would be too sick to attend school? And now, we are praising God that there is a chance he can co-enroll and attend a day or so this fall. God bless the little things. On Mason's MRI our pediatrician said they saw a sinus infection. It wasn't a tumor, it wasn't more cysts in his brain, or myelin changes.. it was a sinus infection. God bless the little things. This Saturday we have so many people coming to his fundraiser I had to ask our neighbor to lend us her home, she said yes, God bless the little things!

Anyway, that is enough rambling from me. I just wanted to update, tell you of all good news.

Have a blessed day, enjoy the little blessings of life!

Love Lisa and the boys

Thursday, January 29, 2009 12:49 AM CST

Quickie note on Aiden:

Still doing good. Not AS good, but good. Aiden has been really red and itchy. I think it is all an allergy flair, but his labs last weekend were a tad higher than the previous draw. We are dumping fluid in him again, just to be safer than sorry. ALthough we fully realize we can't seem to control any of this. Joey is scheduling his follow up appointment with Dr. Grubb for march, it will have been 1 year since we have seen him. The heart monitor needs to "listened" to, and "interperated." And finally we are also looking into the possibility of him getting rescoped, since he still has all the GI symptoms from the eos disease. (the reason for the Steriods). It is about time that something has to change. I don't think though the steriods will be a discussion, at least I hope not. I think next is more elimination of foods. Over all though we are good.

Then there is Mason.

I don't know if it is the turns of the tides or the shifts in atmosphere or the calmess of Aiden's medical dramas that has me in a total tizzy about tomorrow's test. I keep rationalizing that Mason is thriving and hilarious and developing faster than we can record in his baby book. But it isn't sinking in.

Maybe this is the first lull we have had since Mason was diagnosed with his "precious cute syndrome", and maybe I am just now dealing with it all. But in anycase I just sit and think of MASON with that little Iv in his arm. It makes me want to burst into tears! Last time we did this MRI we found another cyst in his brain. A fluid fill cyst that quote: "isn't hurting him". Ok.. so now we have two cysts in his brain, filling with spinal fluid and i am supposed to not think about it? Well I didn't think about it. Not at least until last month when we scheduled the follow up MRI.

(Edit: There are people reading this who have no idea what I am talking about ... (what's new?) they didn't realize that Mason also has a strange medical history, So here is the link to a list of the type of lesion's Mason has. 1) epidermal Cyst on his post cranio fossa and 2) arachnoid Cyst on his cerebellum here is a link explaining cyst and their implications: CLICK HERE FOR CYST EXPLAINATION ok.. now back to the regular programing)

So tomorrow is the big day. He is going to be in his MRI for a tad over 1 hour and then we will hear in the next few days if the 1) went away 2) stayed the same 3) grew and 4) grew yet another buddy, a new cyst.

I am not worried about #3 I don't think they have grown, since his development is so good. But I am soo scared they will tell me another one is there. Sure if you know me in person, I may make a joke about it, or not lead on that this is terrifying me, but that is why I have this site. I can say it with out feeling foolish. I am scared.

Do I know it can be worse? yes. But if you KNEW Mason, if you KNEW that little sweet heart you would just melt thinking of him getting a little IV, and being in a hospital. He is already so frightened because of Aiden, that it just kills me. He is so tender hearted.

I hope you don't think I am saying that I wish it was Aiden. That kid has been through enough for a lifetime. I wish nothing on him but a life of peace and health. I just wish Mason didn't have this THING looming every 6 months or a year.

In anyway, LAST YEAR I said, I was almost positive it would be gone, and it wasn't. THIS year I am saying, I have no expectations. God has a plan for us, I am trusting Him fully. I just don't like it sometimes. I admit it.

Anyway, tomorrow is the Big Day, say big prayers for Baby May May. He is such and angel.

Love to you!

Lisa

Saturday, January 24, 2009 10:43 PM CST

If you normally mute the music, You need to play it to watch this very tiny clip of aiden.. it is a fast clip, but it is my very first little "movie" I have ever done on this site.

OK.. got the Alan Jackson going???

hit play

Today Joey took Aiden to get his labs and port flushed in the ER. Aiden decided it would be a good idea if he did it with out mommy. "Mommy, I want you to rest at home. Go rest." I am not thrilled about this idea, I want to go. I want to hold him when he cries, I want to be there. I am always there. Let's face it, I am controlling. But I respect his wishes and I stay.

Lets just say it was a very bad day. So bad that our amazing Big Head Ed even had to call it quits at one point to get more help. I can't write down the things that happen in the room because 1) I never want to re-read this journal and relive this hell. 2) I think it is so private. that type of raw fear Aiden feels.

So it was a bad day for my buddy. And a bad day for Daddy. That is MY job. Over the years I have been the one who did 90f the awful stuff. Epi pens, reviving, rushing to ER's, pain, crying, consolling, learning, educating. I am thankful I can take this burden on me. I feel like I get to protect others who love Aiden. "I will do it so they don't have to hurt." I sometimes get to protect Joey from the pain. But today was bad. With out getting into the long details, I was so frusterated. I wanted to be there in the first place, I just want to take it all away from Aiden, but I wasn't. I wasn't there. I was "resting." (If you call pacing the floor, chewing my nails, and praying at home "resting" then I was like in a coma I was so rested. )

So after my frusteration lifted, I feel somewhat ashamed. I made it all about ME! How I felt NOT being there. How *I* was in the worst place. But I didn't give Joey his big hug when he came in. I ran to Aiden, but forgot Joey.

So in my moment of selfishness, panic for my child, I didn't do that one thing I always hope He will do for me. I didn't say, "I am so sorry you had to see your baby hurt. I am so sorry and I love you."

So this.. this update, is just that. Joey, I love you and thank you for being the greatest father in the world. For never turning your back, for always being that Daddy that kisses and hugs and makes boo boos better. Thank you for trying to do the hard stuff for me. Thank you for trying to do all you do for both of your boys.

You are the best dad... and I am so sorry we have to see our baby sick sometimes. I wouldn't have chosen any one else in this world other than you.

An Ode to Daddy

(yep another post written for Joey... that I don't mind you seeing as well. But Joey this is for you)

THANK YOU:

for helping Aiden reel his fish in

For sitting for hours in the hospital playing Bingo over and over with both boys.

For volunteering to get your blood drawn as a test sample for Aiden's hemotolgy tests. You knew mommy wasn't going to step up the plate!

For being the big strong hand they hold on to when they just want to feel loved.

For being the Coach... even when you just worked 25 days in a row.

For making bad choices, but making the kids laugh while you do it.

THANK YOU for having taken this photo in highschool so I can post it here and make fun of you.. THANK YOU

Thank you for taking Mason for his first IV, his first MRI and letting ME cry in the hallway.

for being sweet

for the kisses you give

For teaching the kids the very important parts of life (like fishing) from a very early age

Thank you for this memory. How we were able to laugh when aiden was a baby, was beyond me. You have always been so strong.

For holding Aiden the day he was off the ventilator after transplant. I was so terrified. You were so brave

For reading that same Thomas catalog to Aiden for weeks in a row when he was in for rejection.

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

Joey, I know today was bad. That it hurts you too. For almost 7 years we have done this. And honey we have "showed" them. All those people who say that parents of chronically ill kids have a 70 percent divorce rate. Sure we have cried together, but we have laughed more. I love you and it is going to be better soon.

Thank you for helping today, and all you have done for both of the boys. You are amazing.

Love Lisa

PS/ EMERSON GOT HER MEDICAL COVERAGE! THE LETTERS AND THE CALLS AND THE NATIONAL MEDIA PAID OFF! Emerson, we love you and are praying for your future and your recovery. XOXO

Monday, January 19, 2009 8:37 AM CST

Ok yes, a hiatus. That is what we had. I mean after updating bi-weekly for 52 weeks about not such good stuff, I was just happy leaving an update on the page that was well.. so boring!

I am working my way back into the medical life. Tonight we have the pure joy (for Aiden's sake) of him going to the hospital and TESTING OUT the new video games for the new hospital. Yes, you read that right.. it seems being on the parent advisory council has a nice benefit.. Aiden can try out the games. Hey at least he gets to PLAY the games and I don't have to beg and plead for someone to give me a key to the video games.

So today was the day I was supposed to take Aiden in for his monthly torture. Ermm I mean his port access. Yes, it is still a nightmare. More than you can possibly imagine. Screaming, begging, holding down. Things may be calm here, but they are still not normal. Alas, though my husband is home from work since today is MLK day and he works for the state... and honestly child torture isn't EXACTLY what I dreamt of doing with my few hours I spend with him/family.

So as usual, I will take Aiden tomorrow and we will git 'er done. In other news we got back Mason's x rays from Endocrinology. Part one of the "why is he so small?" Testing. It said his bone growth measured out at only 2 years. He was 3 years and 3 months at the time of the X ray. This, if you can believe it.. is great news! This means that he has some "room to catch up". YAY. So yeah, he is little.(Again, trying hard to make myself care.) I love how he is made.. because he is so adorable and cute and precious. (someone stop me) But the part two of endocrine "Why is he so small?" testing will be completed on jan 30th. During the MRI of his brain, and his lab work.

EEKS! I am not used to waiting for MRI's and diagnostics to be done. Usually it is one of those, "OH MY GOSH GET HIM IN MRI NOW!" SO this whole appointment and waiting is creating some extra butterflies in my belly. I am trying to ignore.

Aiden is still doing good! He has had some allergic stuff lately. I almost forget when he gets a hive all the stuff he is still allergic to. But it seems that he is reacting to something lately. He has been itching and covered in hives for 5 days. Benedryl is our friend.

So, I have only a moment to finish this update and I have vowed to myself I would never get politcal on this website. It just isn't the place. BUT today I think I will break my vow and make one comment.

This isnt democratic or republican.. this is just an American talking.

Baby Emerson is fighting for her life. And it seems that the state of colorado isn't so happy that she has to be in ANOTHER STATE.. so they decided to just DROP her medicaid. This is a baby who has MAXED OUT on all her medical insurance. (equate that to the pain she has suffered rather than the money it costs) and MUST have help so she can LIVE. But the big long "vacation" she is on right now.. just disqualified her. Oh wait.. she isn't vacationing in Nebraska.. she is laying in an ICU bed. SO now.. with no insurance because she just so happened to be born sick, and require medical care that isn't provided in her own state.

You can't escape it. Every news channel, every public channel, heck even HBO last night is counting the moments till That innaguaration party. All to the sum of $150,000,000 (estimated). My goodness, people are losing their homes at an exponetial rate, jobless, and one of "our babies" has just lost her medical care. I am not saying this is something new to THIS president, This has been happening for decades. I am just saying... there is an unjustice happening to a little girl. And I am mad.

Please check out Emerson's page. Please on behalf of this baby, write a letter. (all information on where to send your letter is provided on her page). She needs this to live. She deserves this. If you aren't a letter writing person, say a prayer.

You may have your opinions on medicaid and "welfare" (as people like to lump them together)... but THIS child.. SICK CHILDREN, are the reason why it was created. No one is being taken advantage of. Just a baby who is sick, and will not live with out her transplant.

This is not a perfect system, it isn't even close.. but we can do things to help change it. Joey and I fundraise. It STINKS. I am about to have the most fun (and hopefully only) fundraiser of the year. It is HARD to do. Not physically hard, but emotionally hard. It is embarressing. It is difficult. It is hard for people to understand. I know there are some that judge us. They see our lives and think, "Well I just saw Lisa and Joey out to dinner!"... "I heard Aiden has a wii" (which by the way was given to him by our friends) But there is judgement. But unless you walk in these shoes, it is so hard to understand. This isn't a scam. Emersons' parents are not UNINFORMED... Haley's parents DID have to fight for 9 months to get her insurance to commit to cover her transplant. (Yes the one she never got.) This is real life. My husband works 3 and 4 and 5 jobs. Cleaning yards, powerwashing, mowing... And his full time Job as a grapefruit saver/ blueberry Master. We have an income. We have a budget, and we have medical bills. This is life.

Just like living with a diagnosis that is devastating, you have to make choices. Choices to lay in bed crying all day, or one to get up, wipe your eyes... and enjoy your life as you have been given it.

SO with all that said, You guys ROCK! You are MY heros. Thank you for never being "those" people who do that. For coming and loving my children. For getting those shirts, and cookbooks, and being part of churches that give. Thank you for your hard working sweat at yard sales, and making those cookies for us to (eat) sell. Thank you for "getting it" even though you may or may not have lived it. You guys are different. Different than the average bear. I can't thank you enough. You are all on "TEAM AIDEN" and you are our hero's!

Sometimes I step out in the real world, I hear a little snicker about something, and it wounds me. I pretend it doesn't, but it DOES. I get to come here, vent and rant, and you guys just listen. (or click the red "x" in the top of your screen)

Today there is something I can do on behalf of a child that is in need. My letter is written, my prayers are being sent. I love this family, and I can't wait to report they were victorious!!!

Have a great week! I will update with Aiden's lab results tomorrow. And just for good measure can we all pray for Mason's little "cysts" in his brain have vanished. We just want to put all of this behind us. One kiddo at a time. We love this peace. We love this good health. I want it to be like this forever.

Love and thankfulness to YOU

Lisa Hawk
The Team Mom.

Friday, January 9, 2009 7:05 AM CST

OK I know that was a long break. Even the Spamers were coming to my site to see where we went! Gee aren't we lucky? Well things have returned to normal. Mason is back in pre-school, Aiden is back in his homebound school, And I am loving having a routine again. With the new year has come the resolution of less procrastination/ avoidance. SO, with that said, Mason's MRI has been scheduled for January 30th. After being 3 months late on that, It was scheduled. We will also get the gobs of blood work and labs on Mason ordered by his endocrinolgist over 7 weeks ago. I don't feel bad not scheduling it, I mean everytime we have his MRI we find something new, and everytime we don't do anything about it. I respect the idea of keeping an eye on the two cysts, but I also am a realist and know that as long as Mason is developing and doing good, we should be in the clear. But it is done. So the next time Aiden and Mason's neurologist pops his head into Aiden's hospital room I won't be hiding under covers becuase of my noncompliancy.

Monday Aiden sees Nephrology and I can't wait to report to Dr. Perfect Hair just how great Aiden did this last month. We saw him last month and increased that florinef and still Aiden remains stable and healthy. He has had increased Blood pressure and some headaches over the last 5 days, but I suspect it is because it is so hot here and he is so active. The headaches start in the afternoon around 3:00 each day and it is usually after a bike ride, sand box play, or something physical. I suspect we will add his blood pressure meds back on. That isn't anything bad, it was just a weird bonus that he was able to come off by a fluke over the past 8 weeks. Blood pressure is the main trigger for his dysautnomia. It is no coincidence that the blood pressure has been stable and the dysautonomia has been stable.

It is just a welcomed blessing. An amazing Gift. And honestly a weird phenominon for me and Joey as parents. We will take what we are given with no caution or fear.. this is the good life! Of course now I have been thrusted back into the real world of my brain isn't in hyper drive trying to save my child, now I am just umm.. well.. a mom.
NOthing wrong with that! Well all except the fact I have less excuse to not have a clean home my house. But we won't get into that.

So with all this calm you will see I have done the very same thing I did last year when things went into a calm season.. I am thinking of how I can possibly get Aiden into school. I am looking at a homeschool/school. ??? What is that, you ask? Well it is a school where the children attend 2 days a week with qualified teachers in a classroom setting, and then the other 3 days a week the parents homeschool and follow up with extra ciricular activities. It sounds great except 1 thing. I can't leave him. So, I am dreaming that they have some volunteer position, phone answering, filing, whatever that I can do while I stay on sight with epi pen in hand. I don't know what is going to happen for Aiden, what we will do, but my desires for him have never changed it just seems that our reality of his better health has changed. For now.

Yes ok, we have had 2 months of health and I am already throwing the kid in school, jumping and shouting from rooftops. Yes it maybe a tad premature but this is all we ever wanted for him. Some people think we are at this incrediable peace with having a chronically ill child, we must have special magic fairy dust that makes me capable and in full acceptance of having IV poles and Sharps containers in my living room. Nah...(ALthough the IV pole has doubled as a fabulous coat and hat rack,) I wouldn't mind AIden just being healed and never to worry again.

I will keep you posted on the school thoughts. School doesn't start until next fall, we are perfectly thrilled with Aiden's Hospital homebound teachers they are wonderful. So we will see.

In other news,

ummm

ummm

ummmm

The weather is really amazing. Mid 70's every day

Ummm...

Biscuit got nutered, it didn't make him stop chewing.

ummmmm....

We still have our christmas lights up.

ummmm

OK there is no other news.

Yeah, that is about it. A ridiculous calm here. I am not even thinking about the other shoe dropping, (lightening don't strike!!!). We are doing great! This home is like our own little version of 3 men and a little lady. except, um well I am not THAT little.

I have some great photos I will be putting up on Monday after our appiontment with Dr. Perfect hair. Have a great weekend, Live Laugh and Love all over it!

Love, Lisa

The Team MOM.

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