Bella has a mild from of cp and 22q11.2 deletion syndrome

leg.jpg

 

. I don't blog much about her having cp as it's so mild but she does wear leg braces at night and take backflen for leg pains.

Today she ran 21 laps for fun run. I couldn't be more proud of her for not ever letting having cp or 22q ever get her down.
Bella is 9.

As you all know I have a daughter who is 9 years old who has 22q deletion syndrome. My daughter also has a mild form of cp she wears leg braces at night and takes backflen. Bella also has a rare genetic disorder called 22q11.2 deletion. I am sharing this on hopes to find other parents or others who have cp in hopes to help us navigate the learning process of her diagnoses. I know very little about the mild form of cp. So often I see the outward symptoms of cp from people I know who are in wheel chairs or use a cane.It is unfair for me to assume that is how mu 9 year old will turn out and be because I know there are others out there with a mild form of cp like her. There has to be.

I always wonder how my daughters form of cp will effect her. She has a mild for of spastic cp.  I know all too much about 22q11.2 deletion syndrome and I know that the syndrome amplifies the cp but I am not sure how much it will as she is entering pubertyshe is 9 and all ready had to get her a sports bra for a training bra and she has been a emotional pile of goo once a month andI am assuming she is hitting her growth spurt because she is eating as much as my teenage step son. I always have to have snacks on hand lol usually high protein because I know how much she uses the calories and burns though carbs she has a high digestive rate.

I am glad that the backflem has helped partly she is not up all night crying in pain do to her legs as long as she does her meds and stretches. I believe do to her having cp her leg pains have lessened at night I am not sure though to be honest as she is only 9 years old. Bella has outgrown her leg braces and I need to get another set made.  Which will happen soon as I can get a doctors appointment set for her.
I am looking for all the information and looking for others who have it with websites similar to mine that I can find. I blog about our medical journey living with 22q11.2 deletion syndrome as I have it too but I know so little and feel so lost when it comes to the mild form of cp and am blindly following drs instructions.

Anyone else in the same boat leave a comment below.