Hello All ~
It's hard to believe fall is upon us already! Taegan has really enjoyed being outdoors this summer. She is very curious about grass, trees, flowers, and especially rocks!
Taegan began a special needs preschool program in August which she attends 4 days a week. It is provided through our local school system. It took a few weeks for her to adjust, but she is doing well now. She LOVES riding the school bus especially. Her new words are: friends, school and bus. She's singing a lot more songs now, and is able to pronounce the words quite well. She loves to sing "Head, Shoulders, Knees & Toes."
She receives PT, OT and Speech therapies through school now, but she still receives them privately as well. She actually has PT 4x's a week, OT 2x's a week, Speech 2x's a week, Hippotherapy 1x/wk, craniosacral therapy 1x/wk and chiropractic care 1x/month. So, we're still busy, busy, busy!!!
We met with the physiatrist (doctor of physical medicine) last week and decided to go ahead and try the Botox injections and serial casting. Taegan has had such a growth spurt, that her muscle tightness in her ankles is extremely tight now. It is causing her to be unstable with her balance and she has much difficulty walking. Her braces have not fit her for several months now, which is also contributing to her spasticity. The braces keep her muscles stretched out when she wears them. Since she's been unable to wear them, the problem is exacerbating We don't want to fabricate a new pair until after the Botox and serial casting, or they will not fit properly.
She will have her Botox injections on September 26th. We are only doing her calf muscles this time to see how well it works for the rest of her foot. She will be able to have more injections in 3 months, so at that time, the Dr. might decide to inject different muscles, depending on the outcome of the casting and first injections. She will have her casts put on the following Friday (Oct. 5th). Both of her legs will be casted at that time. The Dr. will stretch her foot as far as the muscle will allow, and then cast it in that position. She will have the casts for one week. Each Friday she will have the casts taken off and her foot muscles stretched again, even further, and then recasted in that stretched position for another week. This process will go on for about 4 weeks, depending on how fast the muscle stretches.
Please have good thoughts that the muscle cramps/charlie horses for Taegan will be few and far between! I can only imagine how this might go... when she wore her night splint on ONE foot, she would have terrible muscle cramping where she'd wake up screaming and grabbing at her leg. I could see it spasming. I don't know how I'll be able to help her when this happens with casts on that you cannot take off to rub the muscles when they're spasming.
The Dr. also gave us new dosing instructions for the Melatonin (natural sleep aid) to try for two weeks. Hopefully this will help regulate her insane sleep patterns!!! Lately she goes to bed about 10:30pm, and is up by 3am. She then stays up (in her bed) until roughly 7-8am and sleeps until I wake her for school! She's been grumpy and moody a lot, I presume from this erratic sleep schedule.
The chromosome testing showed that Taegan has what they call a duplication of 8p23.3
It is a duplication of part of the 8th chromosome. Instead of having 2 copies of that part of her 8th chromosome, she has 3. It is a very rare disorder, so rare in fact, that the genetics doctor had to get all the information on it from Wales. They sent me a pamphlet on the disorder about the studies these doctors in Wales have conducted on people with this disorder. The pamphlet only references 40 people who have this genetic disorder. I've taken the information with a grain of salt, because quite frankly, Taegan really doesn't fit into many of the categories they address in the pamphlet.
Some of the physical symptoms of the disorder which Taegan exhibits are: flat nose bridge, extra skin folds around the eyes, lower set ears, and a shared toe joint. The pamphlet discusses mental retardation and heart defects, which appear to be common for this disorder. It's not treatable or curable. Since Taegan has Cerebral Palsy, we're not sure if it is her chromosome disorder that is causing her delay or the CP. That is something we might be able to distinguish as she gets older.
We might have to investigate the possibility of a heart defect, although I would think the NICU would have found evidence of that after her birth. Taegan had a hole in her heart at birth, which they monitored during her first week in the NICU. They did several echocardiograms during that time, and the hole in fact closed on its own by the end of the first week.
We're looking forward to fall... pumpkin decorating, apple cider and Halloween! Perhaps Taegan will go as a mummy...her casts would go quite well with that gettup!
Before we know it, Taegan and I will be headed back out to the Blue Ridge mountains of North Carolina for her third set of 40 HBO treatments! (November 25-December 18)