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Natasha Weymouth hasn't added a story.
*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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