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Angels help Hayden Carver and family.
$1 Raised
0% of $50k goal
1 contributor
3 Years running
Hayden was born 7lbs 3ozs 18 in long on June 12th, 2011. He has a sister, Kayleigh, who is 14 months older. We noticed at a very young age that Hayden wasn't meeting his milestones and expressed our concerns with the doctor. We were told that every ... More ...
Hayden was born 7lbs 3ozs 18 in long on June 12th, 2011. He has a sister, Kayleigh, who is 14 months older. We noticed at a very young age that Hayden wasn't meeting his milestones and expressed our concerns with the doctor. We were told that every child hits their milestones differently, to wait for his 4 month check up and we would talk again. Four months later Hayden was still wearing newborn clothes, no head control, and was very floppy! Finally we got a Neurology appt. I have to say we are so blessed to have the best neurologist in the WORLD.............anyways he got the ball rolling referring us to GreenWood Genetics and then we endured several painful months of waiting! In the meantime Hayden suffered from reoccuring "VIRAL" infections, ear infections and a couple of hospitalizations. We were being discharged from MUSC January 3rd when I got the phone call telling us that our son had a very rare disorder called 17q25.2q25.3 Duplication 17q25.3 Deletion. Only 20-25 people worldwide are known to have this disorder. Since we've gotten the diagnosis we have several specialist on board and have found even more issues that have been going on with Hayden. He has had surgery for tubes, adenoids, and now g-tube. Prior to his adenoid surgery which was the 18th of July Hayden's eating decreased by half; the doctors knew this and proceeded with the surgery. He got an MRI on the 24th, went home and his eating got worse day by day. Miscommunication with G.I. led us to being admitted July 29th. During that stay he wound up getting the g-tube (August 3rd) and got to go home on the 5th of August, only to come back down by ems on the 7th! Hayden wasn't tolerating his feeds and come to find out (a wonderful nurse found out) Hayden's stomach wasn't emptying properly. It was "50 mins delayed" so we started up some motility meds which have made a huge difference. Hayden's neurologist suggested that we have a second opinion from the geneticist here just to make sure nothing else was going on. So the doctor came up and told us he wanted to do two test and that he would probably never see us again unless something was wrong. A couple of days later he came back up and told us that his urine test came back with an abnormal range for mucopolysaccharide and that further testing needed to be done. I wasn't expecting to see him again; two days later......he tells us he had been working on Hayden's case all morning and that his deletion 17q25.3 carried the MPS 3 type A on it and that raised Hayden's chances of having it :'( We won't know for three weeks! So that brings us to today. We've been living at MUSC Children's Hospital for 23 days and we need the love and support of everyone to get us through these dark times. Hadyen faces a lot of obstacles and we just need to be grounded. We think having this page up will help keep us from all of the negatives! I think it's important that you know Hayden is the happiest baby ever. If he's not smiling somethings wrong. He truly loves EVERYONE and is so innocent! I want to thank the 7A nurses who have been taking care of my sweet boy since he was 7 weeks old. All of you have a special place in our hearts and I don't think we'll ever be treated as good as you ladies have treated us!

*Update since I last posted
Hayden has spent over 50 days in the hospital since 7-29-12! We have ruled out MPS 3 type a :) We decided to have a second opinion at the Children's hospital of Philadelphia. Hayden will be admitted December the 9th for pre-op he will have a upper endocscopy, colonscopy, ph-probe, and momenter testing (sp) the doctors believe he has severe dismotlity from the top to the bottom. By the time all this testing is complete we will know how slow everything is moving possibly a new disorder. At this point Hayden is completly g-tube dependent. His modified barium swallow study confirmed that he was asperating everthing thin and solid :( it's been a trying time for our family Hayden is almost 18 months and wants to eat/drink. It's gotten so bad that he will roll into the kitchen and try and get anything he can off the floor. Once all of this testing comes back I hope we can get him eating again. After all the motility/g.i. stuff is out the way Hayden will have a whole work up checking for a mitochondrial disease. As of right now Hayden's diagnosis are: 17q25.2q25.3 dupliation 17q25.3 del, Hypotonia, FTT, Developmental Delay, Gerd, Gastroparesis, Pseudopapilledema, Left Pulmonary Artery Stenosis, Reoccurring Infections, Central Apnea, and Chronic Airway Disease with the possiblity of many more to come. Some great news Hayden has almost conquered sitting up! This is huge for him :) I hope this helps explain a little of whats been going on since I last updated this section feel free to message me and ask any question you like! Thanks Hayden's mom Amanda
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