We have been quite busy lately setting up appointments and followups for Casey over the past few weeks. Her new tube isn’t working out and she seems to be in a lot of general GI or hip pain, although it’s so hard to tell sometimes. Just to give you an idea, here is what she has coming up:
Remove her G/J tube and put back the G-tube
The thought here is that the G/J tube isn’t working any better than the G-tube by itself, is more uncomfortable for her, and the J piece is more prone to clogging. Also, any time it gets dislodged we can’t fix it nor can it be done with in-office visit – we would have to go in for an all day radiology procedure, sedation/intubation, etc. The G-tube will keep her as stable as possible during the many procedures she has coming up, after which we will revisit the question of whether to insert a different length G/J, have surgery for a direct J tube, or possibly other options.
A pediatric orthotics specialist we wanted that was out of the country has returned and we have an appointment tomorrow. She will be videotaping Casey and most likely creating custom items for her ankles, knees, hips, and hands.
New physical therapist
Finally, we have a new physical therapist! The one that was coming to the house did great for Casey’s head/neck/trunk/arms, but was not doing much with her legs. Our orthotics specialist recommended a few people and one thankfully had an opening. This will start next week and will still be twice a week.
Casey has her 5 month appointment next week, where she will get another round of vaccination, which she absolutely hates, but who can blame her. We also have a handicap permit coming to make doctor visits easier, especially when Marty is by herself and has to get Casey and equipment out with the standard narrow parking spaces. An extra perk is that hospital handicap parking is free, which was really adding up. All of Santa Monica/LA parking meters are also free, so no more worrying about that – god knows we have paid our portions of parking tickets 🙂
Ear, Nose and Throat
Audiology and ENT have agreed to have tubes put in her ears to help with fluid drainage, since Casey can’t swallow, and to get a more accurate hearing test. This will happen in about a month from now and immediately after we will find out about ordering a first set of hearing aids.
UCLA Cerebral Palsy Clinic
Even though they are extremely busy, we were pushed up on the list and will be doing our first CP clinic at UCLA in a few weeks. They will assist in coordinating care between all her doctors, and putting us in touch with doctors that specialize in our situation.
Ok, this really isn’t what you think, although being that we are in LA saying Casey is having Botox treatments does sound odd. Long before Botox was used for cosmetic surgery, it was used for many other medical purposes. Basically, injecting botulinim toxin into a muscle inhibits contractions, to some extent. Since Casey’s hip problems and hyperextentions are due to abnormal and severe contractions in her legs, botox will basically allow that area to loosen up. Physical therapy and positioning (for instance in her tub or car seat or carrying her) will also be much easier. The treatment only lasts for 3-6 months and results vary greatly, but it is not invasive compared to other treatments for muscle tightness we may need to consider down the road.
After a lot of research, talking to different doctors and other parents, we have decided to pursue hyperbaric oxygen treatments (HBOT) for Casey starting the end of next month. This is one of the few hopeful areas for brain injury patients today. It is considered alternative medicine and not covered by insurance. There are no guarantees on it helping at all, but since traditional medicine today offers no treatments for the repair of brain injury, we are looking into every reasonable possibility. The treatment consists of 30-40 sessions (5-7 times a week, one hour each) in a pressurized, high oxygen chamber. This will increase blood flow and oxygen to damaged parts of Casey’s body, and in some patients have resulted in minor overall health improvement.
Well, that’s about it – told you there was a lot 😉 We will try to post some new pictures and maybe a video soon. Hope everyone is doing well!