Tomorrow Luke will be three weeks old!!! I can't believe it's only been 3 weeks since he's come into our lives. It has been a BUSY 3 weeks!
Luke has now had OT & PT two times. He has been cooperative with each of them once! It's hard to get a newborn ready to be awake, fed and happy at certain times of the day. Anyway at this point they're both working on the same things. They are working on head control, core muscle strength, palm reflexes and visual tracking. The first time the PT came she said that his upper thigh muscles were a little tight. She also noticed that his grasping reflex wasn't 100% there - babies should be born with an automatic grasping reflex. He does do it but just not all of the time. Today I asked her what that means and she basically said it could mean that he has a neurological problem - which we already know he does...so we work on it. He's doing pretty well, for a 3 week old, with head/neck control. When he gets really mad on his tummy he can pick his head up and move it from one side to another. When he's not mad he doesn't even try - I think we've got a mellow little guy on our hands here!
Next week the OT and PT are going to start switching off weeks since they're basically working on the same skills at this point in time. As he gets older they'll branch off and do different activities with him as needed.
We also met with our home coordinator for First Steps last week. The OT and PT that have already seen Luke are First Steps providers so depending on what services they deem necessary we can keep our OT and PT. AND since the hospital already started providing OT/PT then First Steps can move a little faster since the evaluations have already been done.
I went to talk to Ben's daycare about our uncertainty for what's going to happen with both Ben and Luke next year. When we put Ben into daycare I wasn't happy about having to do it. I was thinking that in home care would be a lot better for him. However, I LOVE his daycare. It makes me sad that Ben may not be there next year because he really enjoys it. Also, I want Luke to be able to have that same opportunity. So I explained to them what was going on with Luke and all the million possibilities for what may or may not happen with him. They were very understanding and said that they have had kids with special needs before. Then the owner called me at home to talk about Luke's situation. She has personal experience because she had a child with special needs. It was nice to talk to her about Luke. Also, again I had the nice feeling of KNOWING we aren't alone in this. She assured me that if we need to/are able to send Luke to daycare next year they will make every effort to accommodate his situation and learn about his diagnosis. And since she is familiar with services for special needs children she will be a great resource for our family. We're still waiting a little longer to see how he's doing to decide on my work situation for next year.
We had our last visit from Nurses for Newborns this morning. Luke weighed in at 10 lbs. 10 oz.! He's growing quickly and becoming more alert every day. We are becoming more relaxed with Luke. It's hard not to look at every arm twitch/funny sound/weird newborn thing as a possible seizure. As he gets bigger and more in control of his body and surroundings it's getting easier to relax and enjoy our big guy!
It's all going great so far.....fingers crossed!!
