Just an FYI: The neuropsychologist's office called last week to cancel Taegan's February 5th appointment. She was to have 2 appointments that day in the same medical facility, one with the neuropsychologist and another with the physiatrist. It's a bit of a drive to their offices, so I had scheduled them for the same day. After a lot of schedule juggling, both appointments are now rescheduled for February 26th.
Taegan's ophthalmologist appt. is still scheduled for February 7th and the ENT Dr. is still on February 8th.
Taegan continues to struggle with her sleeping. Her typical sleep pattern has been to sleep unsoundly for 3-4 hours, and then she will be awake, sometimes for 2 and 3 hours before falling asleep again.
The other night, she awoke with a shrill scream that caused me to bolt out of bed practically before my eyes opened! She was having what appeared to be a muscle cramp in her leg. It was her left leg and she was wearing her night splint at the time. When I got to her, her left leg was tremoring and she was grabbing it. I had adjusted the splint the night before, and increased the tension by one increment. (The tension goes from 1-5.) It is set on 2 presently. The orthotist had suggested I increase it one increment per week. The number 2 setting is only slightly bent, so I was quite shocked that it could cause such a reaction. Of course she should be up to 5 by now, but she had all that trouble with being able to tolerate it because of how sweaty her foot would get. We have special socks that she wears with them that have helped reduce the sweating significantly. But, now it seems there is an issue with muscle cramping.
When I meet with the physiatrist, I am going to ask about Botox injections for her high muscle tone in her left leg. Another mother of a CP child advised me to ask for Valium for Taegan if we went ahead and did the serial casting. She said the muscle cramping was almost unbearable for her son when he was serial casted, and that they had to use high doses of Valium to manage his pain. I just cringe when I hear these stories.... and it makes my heart ache even more for my little girl who has to go through all these painful things. She should be enjoying being a child, and exploring, running, jumping, climbing etc. etc. All the things that healthy 2 1/2 year olds enjoy. I still have faith that one day Taegan will do all those things, and I hope that day comes as a result of HBO treatments.
I have been keeping a food journal for Taegan to see if I cannot identify some sort of 'trigger' for these sleep disturbances, but so far, nothing is jumping out as the cause. It may not be a food cause at all. I'm trying to brainstorm all possibilities. I'm hoping after her ENT appointment, there might be a more clear picture painted....
Taegan has been back on Prevacid for approximately 3 weeks now. It seems to have helped her reflux, although she still is having it, just not as severely as she did prior to beginning the Prevacid.
Some good news.... Taegan started saying "Grandma" and "Grandpa" this week. It sounds like "Gamma" and "Gampa" but it's definitely music to our ears! She also said "Taegan" last week as I was spelling her name for her on paper. I got to "TAE" and she quipped, "TAEGAN!" as if she knew what I was spelling. Perhaps she does!? You never know with her...our little puzzle. I just love her adorable voice when she talks.
In other news... Taegan enjoyed her first 'snow experience' last week. She helped build a snowman with "Gamma" and mommy. Her favorite thing to do was EAT the snow. She loved it, except for when the snow touched her skin...she got really upset a few times when it got on her arms where her mittens weren't covering her skin. It was a hoot watching her trying to walk in her snow boots (as if she doesn't have enough trouble trying to walk in regular shoes w/braces!)
You can view some of her snow pictures on her myspace page, which is: http://www.myspace.com/angels4taegan
Hope everyone is staying healthy and warm this winter!!!