Small but Amazing

James has been a pretty small kid for quite some time now. Doctors started becoming concerned over his height, and weight about 1 1/2 years ago. We are constantly struggling to get him to take in as many calories as we can. He gets his primary nutrition from a bottle. He drinks mostly Pediasure and Pediasure 1/5 (same as Pediasure, it just has more calories). We do try to get him to drink some juice and water too. We usually put his Miralax in there to help keep him regular-he often becomes constipated to a point where it can become painful for him.
In the past we have had doctors approach us about getting James a G-tube. A g-tube is a feeding tube that would go directly into James' stomach through an opening in his abdomen. Of course this not something we've ever wanted for James. First of all, James loves to eat and we're worried that he would develop an even stronger oral aversion if he had a G-tube. An oral aversion is where people don't want certain textures in their mouth, or sometimes they don't want anything in their mouths at all. From what we understand we are extremely lucky that James didn't develop an oral aversion when he had his trach. Apparently that is very common.
Lately James' weight has been concerning even me. In the past it's never really bothered me very much. Andy and I are not large people and weren't big kids either. My siblings aren't big and tall and neither are my parents. My mom tells me that we were all small as younger toddlers. However, to me lately it seems that James is not eating as much as he used to. We've always been encouraged to get more calories in him as well as more fluids. It's a pretty hard task. If James doesn't want it, how can we force him to drink it?!
I was able to speak with a nutritionist today that we'll be working with from now on here in Fargo. He assured me that although James is very low on the growth charts, that he has a very appropriate BMI and his height vs weight it very proportional. She did say that even though some kids have a normal BMI that they can still be "too skinny" or "too large". She'll come visit us on Monday while James is in OT/PT and take a look at him. She'll also do a caliper test and see how much he has for fat stores. I think that'll be interesting to know.


On another note, I hope to get some pictures up here this weekend so you can all see how beautiful James is! This weekend we're going to my hometown to spend some time with family. My cousin is having a birthday, so we'll be celebrating. I'm sure our kids will have fun. We'll be out in the country with lots of room to run and play and James will have lots of kids to watch and laugh at, not to mention his Grandma to snuggle with.

Last Day of Summer School

Thursday is James' last day of summer school at the Eagles Education Center in South Fargo. We finally reached a milestone last week, when James got on the school bus without crying for the first time. Unfortunately, he'll get a month off and I'm afraid we'll start all over with the bus anxiety. I have been assured by the bus driver and aide that as soon as they drive off James is as happy has a clam. Somehow, that does not surprise me. James has always done that. It reminds me of when he was in the hospital while we were living in Marshfield. The nurses would tell me how happy he is and how much fun he would have-but the second he saw me he would start crying. It was the most edearing thing.

James has been bringing home lots of pictures that he colors by himself!! I am so proud of him. He loves to color-one of his favorite activities when he's in his stander. He has also had fun playing the parachute at school and just seeing the other kids!

He'll get the month of August off from school but he'll still have his once a week therapies at Sanford. I think James will enjoy his time off from school, but I'm sure he'll be ready to go back to all his friends and teachers at the end of August. I'm very anxious to see his teachers and therapists at back to school night once school starts. It'll be nice to have so many people working with James to get him to reach his full potential!

A Need to Share

I feel I have this need to share our experience with other families who may be in the same situation as us.
My son James was born premature at 25 weeks. He weighed 1 lb 13 oz and was 14 1/2 inches long. James experience a pretty typical course in the NICU. He was intubated, had penumonia several times, required blood transfusions and started feedings by a NG tube inserted through his nose into his stomach. As time went on James got bigger and stronger. Finally about 7-8 weeks after he was born he accidentally extubated himself and happened to be ok! They left the breathing tube out and he did fantastic. As time went on the doctors noticed that James was always "squeaking" while he was breathing. After investigation they found that he had a narrowed airway because he had been intubated for so long. James was required to have a tracheostomy and finally came home 143 days after he was born.
As time went on we noticed that James was not meeting milestones. We knew he'd be behind because he was so premature so we didn't waorry too much, but we did enlist the help of our local Birth to 3 program and got him started with Occupational Therapy. Finally at 10 months old James was able to have a reconstruction surgery for his airway and he was able to get rid of his trach. We were so sure that things were looking up and James would surely start to progress in his milestones.
As time continued on James did not meet milestones. On April 11, 2009 we were given the devastating news that James had cerebral palsy. Our lives were forever changed. We were immediately scheduled appointments with specialists and therapists.
James is now 3 years old and we continue to struggle with the everday things that he cannot do. He is very much like taking care of an infant. He cannot sit, stand, eat normal food, talk or do much of what a normal 3 year old does. Regardless James is the light of our lives and we can't imagine our life without him. He is a very happy and content little boy. He loves Mickey Mouse and snuggling with his mom and dad. He loves to watch his little brother play and laughs at him all the time.
This blog is the story of our everyday lives living with a child with cerebral palsy-as a family.