Tiny Kidd had her first round of botox injections in February. The botox seems to be working well in the areas they injected her. She had a total of 8 places they injected her and she took it like a champ! The doctor's focus for right now is her pelvis and hamstrings, to loosen them so it will offer more seating positions to prevent her hips from further deformity. So far the only side effect she seems to have from the botox is it effecting her sensory. The encephalitis damaged her sensory causing her to have a sensory disorder, which if not controlled is very traumatic. When she's having sensory problems, every little thing freaks her out, movement, sounds, lights, etc. It sends her into, what I like to call,' freak-out attacks.' It looks like she is having a panic attack & starts to hyperventilate and the only way we can calm her down is deep pressure, holding her as tight as we can to our bodies and keeping her arms & legs pulled in. Her seizure medicines have mood stabilizers in them and seem to control the sensory problem the majority of the time; when she got the botox that seemed to reverse it causing her attacks to come out. The first week or two was the worst for her sensory and then started to taper off and now she's only having issues here & there & they are not as extreme. The botox lasts about 3 months & the phenol about 6 months. She goes back to see Dr. Wright for a follow-up in a couple of weeks. We met with the Orthotist who fitted her with her fabulous brace she gets to wear every night while she sleeps, and will fit her with any future braces.
We were supposed to go see her neurologist in Texas for another video EEG in February, but unfortunately we had to cancel for two reasons. We were having insurance delays and Nick's grandma passed away, so we made a last minute trip to Missouri to be with family and say our goodbye's. Even though we went for a very sad situation, it was a wonderful trip getting to be with family that we don't get to see very often and a time for Tiny Kidd to watch her daddy & Uncle Jeff act like little boys again & re-live their childhood...Sadly, the drive home for Tiny Kidd was miserable cause she had developed an upper respiratory infection which she then passed on to me the next day from all the coughing & sneezing she did in my face.:P On the upside, Tiny Kidd got a new baby cousin the day we came home, we just had to wait til we were better to meet her sweet little face.
So we are in the works for a new appointment to go back down to Texas, I will keep you updated. Therapy is going well, she's had some really good moments of tummy time and strengthening her trunk control. The wheelchair situation is still a work in progress. She's been to see the eye doctor, all is good! He could see that her eyes like to drift but because she can focus them back is good (they drift when she is spacing or very tired), she just has to work a little harder to keep her eyes in place due to the damage her brain suffered. He said it's when they get stuck is when we should be concerned, so that made us feel better. We attempted a Hearing follow-up today.....Tiny Kidd was not happy, it was nap time so we had to just leave & reschedule it. We don't anticipate any problems with her hearing, she seems to hear everything. She had a sedated ABR in 2009 (more extensive hearing test) and it was perfect, but because she had encephalitis they just want to continue following up with her. We met with the school board on monday to start the process of transitioning Keely from Sooner Start into the school system by age 3. We will go visit the school in a couple of weeks to check out how things are run and what is offered for her. I'm very anxious about this, I think it will help me with the idea more if I see it for myself. I will fill you in more on this situation after we visit the school.
Enjoying the outdoors before we got one more snow storm
Must be an intense movie.....
The 3 Two Year Old Princesses
Everyone should ALWAYS have one silly photo of themselves
Road trip to Missouri
Tiny Kidd meeting her new cousin, Serenity Piper
she makes Tiny look huge
And FINALLY, we have that fabulous brace I mentioned....Tiny Kidd's Bionic legs....it looks completely uncomfortable but she acts like it's not even on her.....thank heavens...
Look for more photos and videos to come soon.....
