Parker's Promise

I have not done an update in a while.  We are all doing well.  It has been a bit hard this past week knowing that Parker is having seizures because now I get to go back to worrying constantly. He has 1-2 an hour all day long. Nothing has changed much, except knowing that they are seizures now.  For now, we get to play the medicine game again to figure out what will  work to stop them.  Poor little guy.  They seem to not bother him too bad. I've started taking the tray off his high chair when he has them because he kept having these mysterious bruises in the same spot on his knee until I figured out they were from when he kicks his knee in his high chair during the seizures.  Sorry I keep coming back to these- but they are ever present in our day and minds.

On a brighter note, Parker is doing really well.  I was really worried when we started this particular seizure med because while some side effects were great- calmer mind and body and better able to focus- if he was left alone to play by himself he would just stare off until he went into a staring episode/seizure.  He is finally going back to playing by himself!  He will roll a bit and talk to himself and eat/play with whatever toys are in reach.  This is huge! I simply cannot give him my attention every second of the day.  I love what my brother-in-law advised- he said that one of the things he had to learn with his child with special needs is that his is not a father of one child, but of four.  The other three kids need their parents, too.  The other night I went in to tuck my oldest daughter in and she was sobbing, the chest heaving kind.  I held her and loved her until I could ask what was wrong.  She looked at me amidst tears and said "I miss you." It had been a crazy week/day with extra doctor appts and I had been gone a lot. I've been trying, but I've redoubled my efforts to spend one on one time with each of my kiddos. It is amazing how these times simplify your life for you into what is truly most important.

Parker is continuing to work on and improve in sitting and walking.  He is getting incrementally better  every day. I've been saying this for weeks and months, but he is so close to sitting independently.  I have moved into the "catching" roll instead of the "support every aspect of your body" roll. I most often hold only his right hand when he is sitting.  He can sit on the floor, on the bench next to me in church and we are working on a chair.  He is improving soooo much in his "sit to stand." It used to be that every time he went to stand (or move his legs in crawling) his whole body would fire at once and everything would extend- which means if he was trying to stand, he would shoot himself backwards. We counter that by having him lean forward while he stands which breaks the extension and he has to use his muscles.  I have found this helps in so many aspects- including crawling.

We initially were not going to work on crawling because he was so interested in rolling and walking, and his right arm is so weak.  I asked about it a couple of weeks ago because I REALLY want him to start engaging his right hand.  I was really struggling to get him to weight bear on that arm (one of the first steps) and he was really motivated to weight bear on his hands and knees.  I talked to his therapist and she said sure! She showed me how to rock him back and forth and side to side to encourage and teach weight shifting. Sometimes I have to lock his elbow either with my hand or with a "no no" arm brace from our hospital days, but last night he was completely weight bearing on his right on his own!!!  To teach crawling, you move the left arm forward followed quickly by the right leg.  Then the right arm followed by the left leg.  He was really motivated last night and tried so hard!!!  He was doing great a few weeks ago when we started, but the last two weeks he has melted and bent both arms every time I've tried.  Last night was great again. He even moved his left leg on his own!!!  Oh- and with the leg extension, whenever he would try to move his legs to crawl, his legs would extend and shoot back and it was impossible to have enough arms and strength to hold him up and keep him in position.  Now, he is starting to be able to move his left leg independently when crawling and he does not just automatically extend everything!!!

Sorry this is so long and detailed- again this is for me. :)  He is improving so much in his grasp and pincer grasp with his left, feeding himself, chewing with using his tongue and not getting "lefty" finger involved moving the food around his mouth, he his saying "mmmmm" and "mam" this week and back to babbling "b" and buzzing his lips. He makes eye contact, giggles when I tickle him, lets me read him books, sings along with "Twinkle Twinkle Little Star," and he is happy.