Changes...

I just wanted to update everyone who follows Stehle's care for a moment.
Since her cleft palate repair Stehle hasn't found much relief from ear drainage which is concerning for her long term hearing and also for her speech. Stehle already has speech delay due to being born with a cleft palate combined with muscle weakness that is just part of having DiGeorge syndrome. Since Stehle has not been able to exercise her vocal and mouth muscles through talk and babble as other babies would her muscles are weak and don't work quite right. She is starting speech therapy which is tricky because of the ear drainage. Trying to hear with fluid on your ears is the same is trying to hear under water, and if Stehle isn't able to hear right then she is not able to try and say words right.
At an attempt to find out what is causing so much drainage in her ears, her ENT did a small exploratory surgery on her ears and cleaned them out really well. Removing drainage and scar tissue and one of her tubes that she had. While she was under her ENT took samples and tested her allergies and immunities as well to see if there was anything that could be contributing to the drainage. Since the procedure her drainage has slowed and her tests came back normal for allergies and her immune system is the same as before. (Her immune system details are given in my first blog entry)
So now Stehle is making her best effort at trying to learn how to speak. We are using a new speech pathologist at Cook's Children's Hospital and I am very hopeful. The first visit was a little brutal, I didn't realize that just learning to speak could be such a big issue. We were told that before she could learn to speak she has to learn to make even noise. Stehle isn't very vocal at all and only as 2 words in her vocabulary. So we have been instructed to push her to be as noisy as possible which is funny since she's 2. Most 2 year old children have no problem with being loud.
The other kicker was being told that we can't expect to much and we should push harder with her sign language. Currently Stehle uses about 40 signs but it's still not enough to effectively communicate everything she wants and needs to. So we are learning Signed English and trying our best to give her a means to communicate. At an age that is frustrated and prone to tantrums anyway, we want to do everything we can to help her feel like she can at least communicate effectively. Stehle is starting to realize that she is not able to communicate the way we all do, her frustrations are starting to show, so we are trying our best to learn her means of communication. I started teaching her sign language when she was about 6 months old, I thought it would be fun and I heard children that use it can actually talk sooner. Never did I ever think that it would become so important for her to have and for us to learn. So we are learning more signs and we have introduced her a picture book that will help her show those that don't sign what she needs so she can point to her "snack" or "toothbrush".
And last we are coming up on school! I can't believe it. Because of Stehle's diagnosis she will start school at the age of 3 instead of 5 or 6. She will go to what is called PPCD or Preschool Program for Children with Disabilities. We are doing this to help her get a great start at education and hopefully it will set her up to be mainstreamed into regular classes once she starts kindergarten.
We have so much to look forward to but all the "what ifs" can be overwhelming for a mother. Hope this update helps everyone catch up, if not feel free to post questions and I will respond.