Oh my…….this is unusual for me to go so long between blog posts but we are busy, busy, busy around here. I will fill more details in as soon as things settle down but this is just a quick “hello” and update.
I have so many people asking about Hannah so here is the latest: We go Monday to see the Orthopedic doctor for her to get fitted for her brace. This brace from what I hear is made of thick plastic and foam and will go from under her armpits to her hips. I believe it will be like a corset and most likely velcro in the back. She will wear it under her clothes…..maybe I should reword that…..she is supposed to wear it under her clothes; not quite sure she will even wear it! For the brace to be effective and prayerfully stop the curvature from getting worse, she needs to wear the brace 12 hours each day. So, we will put it on when she gets up and take it off at bedtime. I am pretty sure there is no way she would sleep with it on and sleep is our most important thing! So, wearing it during the day is the only option. The doctor warned us that anything less than 8 hours each day is pointless and even wearing it 12 hours each day might not work. So, it will be a wait and see game. The doctor will monitor her every 3-4 months with x-rays to see if the curve has stopped or still progressing. Surgery (which I cannot even wrap my head around right now because it consists of placing metal rods and screws in her back), will be discussed if the curve hits 50 degrees. Right now it is about 35 degrees. So, our biggest prayer request is that Hannah wears the brace and that it will work. I have been talking a lot about it to her and she knows that she is going to get one, but wearing it, I am afraid will be a whole different ball game for her. Your prayers are greatly appreciated.
On the PANDAS front we are still fighting that battle and we actually have an appointment with another new Neurologist in April. He is at Children’s Hospital at UAB in Birmingham. He has been doing a lot of research on PANDAS and we were able to get in to see him. We have had this appointment with him for 4 months now…..his waiting list is LONG! Anyway, he is a wonderful Pediatric Neurologist and is willing to see Hannah so we are going to travel to Birmingham in April to see him…..hopefully he will be able to give Dr. Kim (our Pediatrician) some recommendations for her to follow. We pray that one day this PANDAS journey will be over. I never in a million years would have thought that a strep infection could do this amount of damage to my child’s brain. It has been and continues to be a horrific journey. I would love for a cure to be found that would bring back the little girl who I had prior to September 2013 when all the infections started and then in March 2014 when PANDAS hit like a vengeance!
So, that is the update for now….it is short because my time is so limited for the next few weeks. Lots of BIG changes happening for our family….good ones and I will reveal more when I have time to really sit down, think clearly (my mind feels like a computer that has 2,365 tabs open all at once) and explain all that has happened since December. Until then, we continue to covet your prayers!
Until next time……….