I'm not positive anyone reads this blog anymore and I have so little time, but thought I should post a few updates about Aulton, as he's had some changes in his health recently.
Sleep: His most recent sleep study confirmed that Aulton does indeed have Periodic Limb Movement Disorder, as I guessed (literally) years ago. He was asleep for about 8 hours and moved his legs 147 times. Some of those disturbances were jolting or painful enough to wake him several times every hour. Also, he has mild sleep apnea. The doctor who read the report was nice enough to call me to explain the results, as well as talk about possible treatments. He gave me some options to think about and I'm still thinking about them, so I will have to update that later.
Immune System: We found out a few months ago that Aulton has basically no immune system, his immunoglobulin levels were very low and some were absent. He was tested for all the common strains of pneumococcus and we found out that he had no defenses against any of them. Thank goodness for an explanation of the 5 months of sickness he had earlier this year. The immunologist gave him a pneumo-vaccine and fortunately when we went to the doctor today, it showed that his antibody levels have gone up. They are not in the normal range, but pretty close and hopefully, they will continue to go up as the vaccine works in his body.
Orthotics: Aulton is still toe walking a lot. He is still tolerating his day time orthotics and still hates the night splints. He is getting refitted for new day and night orthotics in a few weeks. I wish I could say we were returning to the lower SMOs, but I think he will be in the tall AFOs for a few more years.
Speech: Aulton is attempting more sounds, but still has few words. I'm fairly certain he has autism, but if he does, it doesn't change anything. He's still Aulton, I still love him and am doing everything I can to help him progress. He is going to be evaluated for an augmentative communication device in the next few weeks. This device can be programmed to Aulton and will give him the ability to say hello to people, request foods, activities, etc. It has more options than the PECS he currently uses.
Aulton is still happy, loving and the sweetest, cutest four-year-old I have ever met. I thank God for trusting me to raise him.
6 comments:
I still read it every time you manage to find the time to write. I love you and think you are one of the most amazing moms ever. We love your little boy and are so grateful to have him as part of our family too. Thanks you for being such a great example for me.
I still read. Thank goodness for RSS feed or I wouldn't know when you post.
Anyway, I too think you are an amazing mother. Your two little ones are so lucky to have you. I pray that things will go well for Aulton.
I didn't know you had a blog so now I'm here to read! I'm glad to hear the update on Aulton! I had to wear night splints and let me tell you those are no fun to sleep in! They would wake me up because I was super uncomfortable.
I really enjoy having you as my friend you are such a great example to me and I hope to grow up to be like you! You are a great mom!
Thanks for the updates on Aulton. I'm excited to see your family soon.
I check your blog regularly and was thrilled to see a new post. I love the pic of Aulton sitting in the chair. I hope you realize what a hero you are in our family. You have handled everything so well and we are in awe of both you and Mike. Thanks for having my boy over the other day. He had a great time visiting with your family. Love You!
I check your blog every once and a while too. I'm not on Facebook anymore so this will be my only way of knowing how things are going for you.
I'm not sure how to express this but I think you are doing a good job advocating for Aulton. He's blessed to have you, and vice versa. Keep plugging along...
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