Our Little Jacob

This is a blog detailing the daily struggles of having a child with Spastic Quadriplegic Cerebral Palsy. My son is 1 of 2 surviving triplets. My son and his identical twin brother Logan who passed away at 6.5 months old had Twin to Twin Transfusion before they were born. They were delivered at 28 weeks to try and save all 3 of their lives. I have a hard time connecting with other parents raising children with severe disabilities so, I thought I would branch away from my other blog to blog just about my son and his special needs in hope of reaching out and supporting other moms dealing with similar issues.

Wednesday, December 21, 2011

Jacob's Birth Story until now.

Jacob was the 2nd born of a set of triplets born in July 2009. He was an identical twin to Logan who passed away at 6 1/2 month from respiratory failure in the NICU. Logan, Jacob and Andrew were born at 28 weeks due to the severe Twin to Twin Transfusion Logan and Jacob had developed around 25 weeks. They were born at 28 weeks. To read the entire birth story of all the triplets visit my other blog at www.motherofatoddlerandtriplets.blogspot.com

We found out that Jacob had multicystic encephalomalacia covering most of his parietal lobe bilaterally and some of his right frontal lobe 3 days before Jacob and Andrew left the NICU. Jacob had a rather uneventful NICU stay so the news was rather shocking. We do not know to this day if the damage was caused from the TTTS or a hypoxic event in the NICU. There was nothing indicating damage prior to their birth. There was also never any brain bleeds detected. All I know is about 3 weeks before they left the NICU is I made a comment to my husband something looked different about Jacob that day when we went to visit him. He had this blank stare that did not seem to be there before. I remember a nurse telling me around that time that Jacob had a little bit of apnea and a bradycardic moment the night before, but they acted like it was no different from any normal preemie...so all I can imagine is that he went without oxygen longer than they said he did before a nurse found him...stimulated him etc.

He was diagnosed with Spastic Quadriplegic Cerebral Palsy when he was around 6-8 months old. It was no surprise. The only thing he achieved at the same time as his brother was smiling and he was a really good eater. He held his head up well at 1st and was able to sit in a bumbo chair before his brother. He ate from a spoon 1st and ate more than his brother as well. A few months before his 1st Birthday he started getting sick a lot and his tone started to get worse. He started seizure meds for "irregular brain waves which was later diagnosed as partial seizure"' and meds for his tone. At 11 months he developed a severe oral aversion and I spent hours at a time to get him to eat. We decided on a "temporary" g-tube. Shortly after the g-tube he started horrible bouts of vomiting. He had  a swallow study that showed he was silently aspirating...which we believe lead to the oral aversion. We tried him on thicken liquids, but slowly he ate less and less by mouth. By November 2010 I would have to gag him to get him to start sucking. We found out at a swallow study done the week before Thanksgiving 2010 that he was aspirating everything and it was advised we stopped feeding him by mouth. Since then we have done a lot of feeding therapies and have him eating 5-10 bites of baby food at a time and just recently he started sucking on the pacifier for short periods of time. He does not have the coordination to keep it in his mouth by himself anymore so we have to hold it for him.

Developmentally his is around 3-4 months. He is currently 2 1/2 years old. He has pretty good head control. He can bear weight on his legs with someone supporting him. His legs are very tight but his arm are weak due to the medication to help loosen is legs. He has some control of his hands and legs, but not enough coordination to reach out, grab, or hold anything. He has not hand/ eye coordination. He was diagnosed with cortical visual impairment so I am not sure how much he sees I just know he CAN see. Most of his stimulation comes from sound. He reacts to sound before he does seeing something. His favorite thing in the world is Moose A. Moose on Nick Jr. This shows me he has so cognitive ability because he can identify when the Moose comes on by his reaction. He laughs and kicks his feet and just goes crazy as soon as he hears the moose's voice. He loves music, especially when it is a female singing...I suppose this is because I always sang to him when I held him to calm him to get him to eat.

Jacob can take steps in a gait trainer, but has no real sense of control. He usually sits in the living room and walks to toward the TV. We back him up and he does it over and over. Some days he does not move his gait trainer at all other day he goes to town. He can not sit or roll over. My hope for his future is that he develops more cognitive abilities and starts to use his hands purposefully.

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