Wednesday, July 1, 2009


Bug has been forgetting some fine motor skills lately and we noticed that she seems to stare in space at times. She is able to do some advanced puzzles and cutting with scissors and other skills and then all of a sudden we are training her all over again. I have mentioned this to the Dr. off and on over the last few years. They would make comments like, "she is so young" Then a few months back her occupational therapist said she looked over the notes from the very first visit and noticed that it was a concern of mine. She was starting to notice the same things that I have.

Sometimes, it is so frustrating when you have a child with whom they( the Dr's) don't know what is really wrong with your child and on the outside she looks normal. Yes, they notice her muscle control and other things but, they are not with her 24/7 to see how she functions besides what the parents say. I like our Dr. she really is great and does listen to me and if I tell her that I think we need to do something-she works with us. Its just I wish we could just find out everything right away. I know, that is not possible-I think I am just tired and feel like venting a little. I hear this from so many mom's when I am waiting for her therapy.

Anyways, back to Bug. Next week we will be going out of town to the Children's hospital to the neurologist to see if maybe she isn't having some silent seizures or maybe even some mini-strokes. When we first moved to Wichita some 5 years ago we went to a neurologist out here and it was horrible, at that time I had the same concerns and this was before we knew about the chromosome deletion and other stuff. We only had the knowledge of her stroke. We had no ideal what was wrong with her and thought maybe it was cerebral palsy or something else. The Dr. was horrible and I left there crying. He made me feel stupid. Since then I have found out that many parents have had the same experience with him. So like them I am going out of town. Of course I pray that it isn't a seizure or stroke. I will just be happy knowing and if it's not either issue them I will except the fact that it will be something we will have to deal with until they know more about the deletion in her chromosome.
I trust that God is in control of all things and I am so thankful that he is. No matter what the outcome is next week I will be thankful and praise HIS glorious NAME. Casting all my cares to HIM.

1 comment:

  1. Renee
    My name is Fran. I have an 8 year old grandson who has gone through similar things since he was about 5 years old. He had a seisure and was diagnosed with Epilepsy. Then he became very sick and fevers and vomiting enlarged speen and liver, pnuemonia over many months. Finally we were referred to an oncologist who did an MRI. He had a severe sinus infection. It took severe antibiotics to clear it up but now he is well. Thank God. He has Tourettes Syndrome which seemed to develope while he was so sick. He tics. But now he is coloring, writing, using scissors, things he couldn't do before. God is good. I hope you find the answer for your little one.


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