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TEAM AIDEN



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Welcome to WELCOME TO MY SITE



Welcome to Aiden's website! Aiden is 8 years old.



This journey started out with a little infant needing a liver transplant, and now it is about a little boy enjoying the second chance he was given on that day he was transplanted. With prayers, wonderful doctors, and hope for the future, we will get through difficult days and celebrate the wonderful ones. .


FAQ:

WHAT IS BILIARY ATRESIA?
It is the rare liver disease Aiden and about 250 children each year are diagnosed with in the US. Please CLICK HERE for more information.

WHAT IS A KASAI SURGERY?
The Kasai procedure is an operation to create an open duct so bile can drain from the liver. It is named after the surgeon who developed it. The surgeon removes the damaged ducts outside of the liver (extrahepatic ducts) and replaces them with a piece of the baby's own intestine. This new duct allows bile to pass from the liver into the intestine. It has only a 33% chance of success to last longer than 5 years.

WHO DONATED TO AIDEN FOR HIS LIVER TRANSPLANT?
We do not know the family that donated to Aiden. They gave us the most precious gift in their time of loss. No matter their circumstances someone chose to stop in the midst of their greif and think of another family. We will be ever greatful to the infant that we call Aiden's angel.

HOW CAN I BECOME AN ORGAN DONOR?
You have SHARE YOUR CHOICE With your loved ones! You can not assume that having it on your driver's liscence is enough. Your family will be the only one who will make that choice for you. Please think of Aiden and the other children who never got this chance and consider being an organ donor.

WHERE DOES AIDEN GO WHEN HE GOES TO THE HOSPITAL?
Aiden goes to All Children's Hospital in St. Petersburg FL.> for local care.

Cincinnati Children's Hospital for his liver and main over all care.

Dr. Blair Grubb for his Dysautonomia in Toledo Ohio.

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.



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Journal

Monday, July 16, 2012 11:16 AM CDT



Exactly one year ago this is what I posted as my update:



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.........



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Can you believe I wrote that last year??


Everytime I come to update to say what has happened, I am overwhelmed with a feeling of sadness and disconnect with this page. I think about how it harbors all of our devastation. It harbors so much of our pain. It is so honest. I know page after page there is details of suffering. There are memories that I stuff away.

**Not because I was obsessed with sad stories.. but because it was my sweet child's very real life.

So how can I come here and feel excited to share, when with one click away with the words "journal history" I can see it all. All of the stories that I have tried to move forward from?


And then here I am. Updating. Sharing, more. I am here now, getting the courage up because this history shouldn't be forgotten, hid from, or feared. I also needed that time off. I needed to step away, I feel like we have a whole new life and I am just needing to weed through what was THEN and what is NOW.

Living in the past is so unhealthy. Living in fear is just so wrong. I have mastered not doing either. But living joyfully in and hopefully for our future I am learning new.

So why did I begin THIS update, with last year's update?

Maybe you can't read it, or hear it in my tone, but that update is blanketed with desperation. I was so afraid, so UNWILLING to accept that this was it. No more options? They said, nothing was left for him....

and I couldn't accept it.

I feel like having an ugly cry every time I think about this time last year. How every single day was torturous for him. No one understood what level of nausea and illness he endured every day. I was so sick of expressing it to people.. "we are fine".. that was all I could say.


But now.. today? He is all brand new. A whole new child. That endocrine appointment I said, would be 'interesting I suppose'... well that appointment led to the second most important medical milestone in aiden's entire life. 1st was his beautiful gift, his liver transplant. 2nd.. was the day they said, "lets just try that vasopressin again, in the nasal spray form".


I have been holding my breath, knocking on every speck of wood, wincing, praying, and hoping that this last year hasn't been a dream. It hasn't.

I want to .. for me, (because after all this is my page) post how this process happened. How GOD was in the details. How God used people in ways that you would never expect to help guide us to this new reality. So that is what I am going to do.

I may not continue with Aiden's page for much longer after that if I am not feeling led, or I might I don't know what is to come of this precious caringbridge page. The home for my beautiful child's history. I am praying about what will come of it all. But I am here sharing to any one last person who wants to hear how God still works miracles every single day.

So let me begin.

1 year later. 1 year after trying the vasopressin again, but in the nasal form... this is what I can update you with.

Aiden has swam, played, stayed up late, went to the beach, rode bikes, traveled, and rocked this summer time out! TWO days.. (count them).. TWO short days, Aiden has taken zofran in the last 3 weeks. (zofran being the anti-nausea med he used to have to have around the clock).

Life has changed, for the better... and who am I to not share it? To God be the glory! Aiden has a future and it is a whole new life ahead of him.

He still has dysautonomia. He still has Central DI and the other symptoms of this disease, but we actually have found a medicine that makes him feel better, that keeps fluids in the vessles where it needs to be. He is more stable, his headaches are fewer and when he does have a crisis he actually is able to recover 2x as fast.

When he is down and not feeling good, it last for shorter periods. He has the endurance to have 'big days'. We have participated in activities he never has been healthy enough to do... and in just 5 weeks, he will begin school and attempt for the first time in his entire life to go FULL TIME.

Aiden went to cinci for his annual in May, and they scoped him and discovered his eosinophillic disease was back. We are treating him with his regular meds, still no steriods. His adrenal gland is stil non functioning, but he does seem to have much more energy. They discussed whether he will remove his port or if we will keep it longer, and the vote finally came down to remove it after the fall. Lets just make sure he is ok, and will not need it in the fall.

Aiden has had a full crisis on the last day of school, but it was only 1 crisis in 10 months. 1 hospital stay in 10 months!!! We are creating new records with every day.

He has upcoming endocrine appointment and follow ups. I can't wait to see what else we might discover that will help him. I am just so thankful that doctors visits are hopeful now, and not just dissapointing.

Never give up hope.. never stop believing. Some people may have found my 'believe' motto annoying or dramatic but I don't care!! I have this amazing 10 year old boy who is THE MOST optomisitic child. He always looks to the future and I love to hear him tell me about it, I know some of that is because Joey and I CHOSE to raise him that way.

I am not sure if anyone reads this page, but that is ok. As much as I love the encouragment, this page has always been a journal. A place for a mom to heal, share, and plan a new future in a situation that others said was hopeless.

Stay tuned.. I can't wait to share and document the 1 year anniversary of this amazing new life this medicine gave our little boy.

God bless!!!! and in all hopelessness.. this is still hope. always.


Lisa, Joey, Aiden and Mason









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Hospital Information:

All Childrens/ Cincinatti Childrens



Links:

http://www.hometown.aol.com/rolexh/Aidenshope.html   Aiden's old webpage!!
http://www.classkids.org   Where all my friends are
http://www.caringbridge.org/ga/haley   Haley's Website


 
 

E-mail Author: RolexH@aol.com

 
 

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.
 
 
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