Ok, all of my tests came back great! The barium swallow showed reflux, which is why I had laryngitis and then a raspy voice. The CT scan showed no infections, tumors or anything else bad. The chest x-ray was normal. I went off of the Nexium. I had AWFUL headaches all day long every day with nausea. I have now started on the Pepcid and if needed the Prilosec which is great because they are more affordable with our insurance than the Nexium, ouch!
Speaking of ouches, the BOTOX injections are very very expensive. We are thankful that our insurance approved the use of it and will pay 80%. If she needs another injection in 4 -6 months we will need to seek approval again. So she should start to notice some changes from her two injections on the side of her calf in the next two to three days. The purpose of the injections is to basically paralize the muscle(s) that is in contracture which are the Gastrocnemius and Soleus muscles. This will enable the other muscles that have become weakened due to the contractures to be able to work and get stronger. Her two injections were on each side of that area. Overall she did great. I just finished some stretching with her. I love how she has begun to let me know EXACTLY what she is feeling. I was concerned that she was continuing to keep things inside. However, during the stretch she told me to stop touching her right NOW. It took everything that I had not to smile and laugh because it was so beautiful for her to express herself!!
Now regarding her MRI results she has damage in the periventricular area or gliosis (scarring) of the ventricles which is in the deep white matter (basically in the middle of her brain. It is so minor compared to what probably should have happened. Once again, Our God is ALWAYS FAITHFUL! Now with her mild CP remember it will not progress, so she is awesome and on the right track. We will always need to do the stretching and exercises and during growth spurts it will be a wait and see if more injections or serial casting or AFO's need to happen.
Ventricle Images
Regarding Gabrielle who is 22 months old. She goes to the ENT on Friday morning to see if she is still testing positive for STREP. We finished her fourth round of antibiotics on Sunday and she has only sneezed a couple of times and seems great, a first! I have been pumping her with Might-a-Mins Probiotics daily, I know this has helped. If she is Negative or just a carrier we will be fine. If positive another Edwards will be having surgery this year!
OK, now here is where I need help if anyone wants and can help! As I have stated before this is not where my gifts lie! I am the EMT that gets them stable and sends them off. I am terrible at the stretches and therapy. All I can do is to find the resources. So I am looking for any and all resources that have the gift of this kind of care, written ideas, or anything that I am not thinking about.
Also, if anyone knows of a great book with helpful ideas like, using rubber bands on the child's foot to help them learn how to ride a tricycle. I realize that when I have so much going on I do not allow my mind to get creative to tackle and conquer these obstacles in our way. If we are not striving to reach our full potential each day then we are being stagnant and dying right?!
Yes, and once again, Kick-counts saved Grace's life and God made it a miracle. She was just hours away from being still born. So please share this story and encourage all pregnant women to do their kick-counts. Also, if you have a family history of strokes or blood clots and you are pregnant or want to become pregnant or have had miscarriages be aggressive in getting your blood tested for any clotting disorders. Thank you for listening and helping our brothers and sisters in preventing this from happening again. Good night!
audraedwards1@gmail.com
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