Hunter was born August 22, 2008. 7.14 lbs and 21 1/2 inches long at 3:54. He was perfect! He looked like a little old man and I loved it. Everything was going fine but when he hit 3 months and he could not hold up his head we knew something was wrong. We tried day and night to get him to pull to sit and after a few weeks he did! Then he got sick and lost it all. WE thought he would get it back but he still at 13 months hasnt completely gotten head control, he can only support for a minute tops. At this point we signed up for TEIS and scheduled an appointment with a neuro. After an MRI we found out that the was definately something wrong and all the MRI said was possible metabolic or mitochondrial. We searched every where for answers and got nothing. Then shortly after He started have seizures. Simple seizures because i just thought he was pooping. I told the neuro and an EEG was scheduled to comfirm what i had thought all along he had seizures. We put him on topamax and went 2 weeks seizure free then they came back but lighter. These seizures were later diagnosed as infantile spasms but the EEG did not show them. At 7 months Hunter began therapy and was on extended arms! After a month at this clinic they said he made minimal progress and said he no longer needed the intensity he was recieving. We got him a special needs stroller, head support, and a bath seat. Since he made what we seen as progress we slowed down on how much we did therapy on him and treated him like a normal baby. Then 3 months later he could no longer lift his head while on his tummy for long periods of time and is still that way but getting better. At 10 months he was admitted to the hospital for a very scary seizure and we found out he lost a lot of weight. We knew he would of because he had completely stopped eating all but 6 ounces a day. While in the hospital he began to eat a little more but only his foods did he eat a lot of. He was not taking in enough nutrition so he got a mic-key button. We found out one reason he refused to eat was because he refluxed 10 times in one hour! SO he also got a fundo. We still weren't done in there though, he got an echo, tones of x rays and tummy scans and eegs. After 2 simple blood tests we found out he has meneks disease. A rare and fatal disease... We were heart broken and we searched for anything that could possibly help him and sadly the one thing that could does very little: copper injections. We were in the hospital between May 30 09 - june 12 09. We went home and quickly tried to forget what we just went through. Our lives have changed forever. We were told he was a very sick boy but he did not look it. We knew he was hypotonic but people live like that and we still do not see him as sick. We went to NIH in july for his copper and to have the neuro that studies this disease look at him and take some blood samples. We came home having to give 2 injections daily and we still are. We see a little improvement as of now he has held his head up on his ball for an hour! He is more interested in everything and now he is playing with his toys. We recently found a 21 year old and that is so encouraging! We have been in and out of the hospital over small things like seizures and tummy issues and we seem to have almost go tthe tummy issues beat! The seizures are another story. Though he was doing relatively good for the past month he starting have increased seizures so we are looking into keppra and ACTH to see if this helps. So we have another EEG coming up. Please pray for us!
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