Monday, November 29, 2010

Playdate :)

So, James David had a playdate today! (Not his first, but the first one I'm telling you about! lol). My best friend Sam has a son, Jerrod, 3 weeks younger than James David and we have been going to "play" with them some days. Today however, is the first time they actually paid attention to each other with out screaming. James David thought Jerrod was the coolest thing since sliced bread. He wanted to get at him SO badly. He kept bouncin, smiling, and throwing his arms around (hitting me in the face) he was so excited! Sadly, at this point Jerrod was exhausted and wanted nothing to do with James David. He just stared at him. Every time James David reached out to touch him, Jerrod jerked his hand back. He did not want to be touched. So they just stared at each other. (I swear they were telecommunicating.) 

They may not be able to do much now, but I know they are going to grow up to be best friends. They will be mischievous together and get into a ton of trouble just like all little boys do. I am so glad that James David has a friend like Jerrod to grow up with. Someone who is going to know him from day one. Someone who will see him for who he is instead of his diagnosis. And as an added bonus Jerrod is going to be a huge kid so he can beat up anybody who picks on James David ;) Now we just have to figure out how to get them in the same grade... I'm sure we'll figure something out!

Saturday, November 20, 2010

Shunt Scare

Well yesterday was very interesting to say the very least. James David woke up at about 0600 as normal. He was my happy lil baby (unfortunately I think he's going to be a morning person). I noticed what looked like a tiny zit right on the skin where his shunt is placed. I just assumed since his hair is still growing back it's an ingrown hair, and made a note to keep an eye on it. He ate his belly full and then after layin awake for a bit he snuggled up with his Mimi and went back to sleep. Well from then on out he would wake up a bit and just fuss and fuss and fuss. It was awful. But I had places I "needed" to go, so I figured I would just have to deal with him. I put James David in his car seat and went to grab just a few more things before I left, when he just erupted into screams. I unstrapped him and when I picked up I noticed that all around his shunt was extremely red. His skin that was red was hot too. I'm panicking.

I immediately called his neurosurgery's office. Well just my luck, Dr. Johnston's nurse was out sick. So the receptionist took a note. Then she called me back about 10 mins later bc she couldn't get a hold of that girl and she had me leave a message on her machine. Well an hour later she calls me to tell me that they don't think its anything but a reaction to the glue they put on there 10 weeks ago for the closure of his last revision and they'll schedule him an appt for Monday just in case... But if anything got worse they wanted me to take him to the ER. It took all I had not to flip a brick. How was I supposed to wait almost 3 days when I was certain my son was slowly dying? But I calmly said "Ok, thank you." and hung up the phone.

I was very very upset. I watched James David like a hawk for the next 24 hours. Lo and behold, he's fine... I have absolutely no idea what was wrong with him, but his shunt now seems to be in working order. I have no idea how any one person is supposed to be able to lead a normal life with this kind of worry and insanity, but I guess I'm going to have to try...

Thursday, November 18, 2010


I would like to just take a bit to update on James David. 

He's sleeping through the night now. PTL. He wants to sit up so badly, and he can sit on his own for a few seconds before he falls forward. hehe :) He drools like crazy and everything has to go into his mouth! He is learning to eat with a spoon and absolutely loves it. He "talks" ALL the time, and it is quite hilarious. We are trying to explain to him that when he is eating and when he has his passy in his mouth we can not "understand" him, but heck its not like we can really understand him anyways. He has learned to cuddle. He gets his body as close to mine as he can and wraps his arms around me when he is ready to go to sleep. He has rolled over a few times, but nothing too consistent. 

We have had a few adventure too. He got to pet a horse on Tuesday. James David wasn't too sure about Thunder (who was just as unsure about what he was) sniffing him at first but then he touched his warm, fuzzy nose and instantly his face broke out into a smile. I do believe he is going to like horses. He also had his first bbq :) We spent Veterans day at Grandpa Ray's. 

 4 Generations of Ray Men

It's crazy how much you can love one tiny person. Even though he can't really tell me yet, I know he loves me too. He is growing up and changing so fast. Its truly amazing. But all in all he is doing wonderfully :) Everything is up to speed and he right on target. Of course, me bein his mom and all I'm convinced he's advanced ;)

Tuesday, November 2, 2010

Spina Bifida Clinic

Last week James David and I attended what they call the Spina Bifida Clinic at our local Children's Hospital. Its a day where we see almost all of our doctors there in one visit every 6 months so that we don't have to keep making multiple trips. Very cool because these doctors set aside this day to see only Spina Bifida kids. So not only are we seeing doctors but lots and lots of other kids with Spina Bifida of all ages and variety. We even ran into our two NICU compadres :)

James David's doctor appts. went amazingly smooth. We were there almost 6 hours but we got a lot accomplished. His orthopedic said that James David is functioning at a "mid-lumbar" level (talking about the level of his nerve damage). He has impeccable quad strength, but they see weakness in his calves and glutes. He also has uneven muscle function in his right foot causing it to turn inward. I say all this to say that he will definitely walk ("unless he suffers from severe retardation or obesity") neither of which are looking to be a problem right now. He may need forearm crutches or a cane to support himself, but who cares? My baby will walk! An answer to many many prayers!

For some reason though not as excited as I should be. I find myself picturing James David with forearm crutches and it saddens me. I know the hateful things people will think about him. People will stare. I guess I'm still struggling with the fact that I have a son with a disability. Hi. My name is Brittany, and I have a son with a disability. He will never play football, or be mainstream. Although I'm glad for that because mainstream in this town tends to mean concussions every Friday night and lots and lots of alcohol, I'm still disheartened. I love my son, and I want the best life possible for him. The life I know he will have. I'm still just finding it hard to get this preconceived notion out of my head.