Jomar Maymi was born on September 29, 2006. He was born at 39-5/7 weeks gestation via unscheduled C-section for decreased fetal heart rate.
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Jomar
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He was sent to the NICU where his examination was notable for dysmorphic features with contractures, cryptorchidism and hard muscles. Jomar stayed 21 days in the NICU because he would not tolerate any formula. Instead of gaining weight he was losing weight. He went home with neocate, it was the only formula he would tolerate at that time.
After this he had two hospitalizations, one in 01/2007 when he had respitory arrest secondary to RSV. A second respitory arrest occurred in 03/2007, which required PICU stay and he was found to have associated pericarditis. He is thought to have renal tubular acidosis and is on Bicitra for this. He has had poor growth and is currently taking Nutramigen and tolerating this relatively well. He needs a bilateral cryptorchidism surgery at nine months of age. Jomar will also probably need surgery for his eyes if they keep turning in. Another thing that he might need while he gets older is a walker. The reason he will need this is because he has a space in the back of his brain, this space has to do alot with the balance of his body.
Jomar is now 7-1/2 months old but he doesn't do the things he already suppose to be doing. He is realy weak. The last testing Dr.Abbott did showed it was abnormal, consisted with a type1 congenital disorder of glycosylation. "It has been really hard for us, but the most important thing is that he will always have our love and we will always be there for him"
