0.5 years old

Casey's first week of hyperbaric oxygen treatment went pretty smooth. Marty and Casey are going every morning from 8-9am Monday-Friday for 7 more weeks. The doctor's say that most people who see improvements don't see anything for the first couple weeks. So far we haven't seen any changes, but Casey is tolerating the treatments well and we are hopefuly we will see something in the next couple weeks.

I got to go to one of the hyperbaric sessions this week and took some video of Marty and Casey in the chamber - you can have a look in our video gallery here.

Casey also went for her SPECT scan on Monday (which was also her 6 month birthday!). The doctors were running way behind so by the time she was done she was very hungry. Marty did a "gravity" feed without the pump and Casey took 30cc in just a few minutes, which normally she can't take in a full hour. They also had a hard time with the IV and had to stick Casey's hands and feet a lot - they finally wound up putting a line in her neck, which looked much worse than it probably was. By the time everyone got home, Casey was exhausted.

Another round of shots at the pediatrician this week, and mom even got stuck with a flu shot. Because of a shortage, most adults can't get flu shots around here, but because Casey is high risk, our pediatrician agreed to give us shots. Casey also got measured again and is now 12 lbs, 5 oz and 26 inches.

Hearing followup, SPECT scans

Casey's ear tubes were successfully placed this morning. She was able to get the same anestesiologist as she had for her last procedure. Dr. Ayad is so good with her and we just feel so much better knowing he is the one watching for suctioning and such. The ear doctor told us that she removed a lot of fluid from both ears and that they were both inflamed, one more than the other. After placing the tubes audiology reran her hearing test. Audiology told us that she still shows mild to moderate hearing loss in both ears. They explain it as though what she hears is a muffled version of what we hear. For the loud area we live in, that may not be such a bad thing. They want to rerun the hearing test again after HBOT. Even if she still shows some loss at that point they may not recommend an aide, we will have to just wait and see. It's possible that she is picking up the sound, but that due to the damage in her brain she is just not able to fully register what she hears.

Casey is going in Monday for what is calling a SPECT scan, or functional brain imaging. It is the latest in showing brain activity as well as blood flow / perfusion. We will mainly be using this to tell us (objectively) the effect hyperbaric, stem cell, or other therapies in the near future are having on her brain function. We will repeat the test after HBOT and can compare the 2 to see the increased level of activity.

We will spend the rest of this week recovering from today's procedure and getting used to the new PT and new PT gear. Then ramp up for another busy week to follow.

Next week we start HBOT, we have the SPECT, Casey has her 6 month birthday and 6 month pediatrician appointment, more shots :( and the usual GI appointment and PT sessions. We also have OT coming by for the initial eval. After OT comes to evaluate we should start to get OT to the house at least once a week. So anyway, another long week for baby next week.

No to botox, yes to hyperbaric

Well, after further examination, the UCLA doctors have said no to botox for Casey's legs. We were very disappointed and will most likely be going for a 3rd opinion, as we still feel it would benefit Casey from talking to other parents/doctors. UCLA's main reasoning is that the large muscles in the leg don't appear to be causing the stiffness - they are distinguising between "spasticity" where the muscles are holding the entire limb stiff, and "rigidity" where the joint is locked due to other reasons. (i.e inflammation, bone problem, neuro...). When we know more we'll post it but unfortunately for now it's no botox.

On the other hand, it looks like hyperbaric treatments will start Monday, October 23rd at five times per week, as long as her ear tubes get placed without any problems (this coming Tuesday). The facility we found in Santa Monica was founded by Ed Nemeth after an amazing story with his own daughter.

Marty will get to be in the chamber with Casey, but we won't be able to take our suction machine into the chamber as electrical components add a fire hazard with the pure oxygen content. We are trying to find a good manual suction pump with no metal parts. If we can't find anything, we'll just use one of those bulb asiprators, but we really should have something better just in case. Decompression takes 7 minutes (anything faster would be unsafe), so in case anything happens, Marty needs to be able to take care of it for at least that long.

Here is a good FAQ on hyperbaric treatments in case you have questions.

Casey's theratog suit came in this week and she went to Footprints to get fitted. She is now wearing it every day to help with her legs and body posture . I have posted a video of the fitting in our video gallery if you want to have a look.

Casey did see her first big Hollywood star this week when we bumped into John Cusack at one of her doctors. He is one of Marty's favorite actors and we haven't seen anyone new in a while (other than Diane Keaton all the time at the pool), so it was pretty cool.

Nice slow week...

Casey and I are trying to take advantage of this week being a slow one as the next few weeks to follow are going to be very busy for us. Casey's new PT started this week. I like the new one a lot. She jumped right in and started working on plans for Casey's legs and arms. I think we are going to get a lot more out of this PT than the last one. The last one did show me some good excercises to do for neck and head support that Casey and I will still work on, but she just wasn't comfortable working with Casey's legs.

Sometime in October an OT from Westside Region is supposed to come out and do an eval and then from that point on we should be getting weekly if not more OT sessions as well. Anyone who is wondering what OT vs PT is I will tell you what I have been told. PT focuses on the larger muscle groups where OT will focus on the smaller ones. So PT will work on Casey's legs, arms, trunk, etc and OT will work on hand, toes, mouth and other smaller muscles. The 2 will cross over some, but we need both very much.

No doctor appointments for Casey this week. She had her GJ removed and a new G placed on Friday and so the next GI will be Wednesday next week.

While she and I were at the clinic last week I saw a posting for a research project they are doing for female caregivers with seriously ill children. I called and qualified so I am participating in a research project now. I have to answer lots of questions, get an MRI and collect urine. Nothing major, but it will pay $225. I told Tim I will become alab rat to earn my keep :)

Next week we have lots going on. Tuesday Casey has an appointment with her ped. She needs to check in and be sure she is in good health before the doctor will sign off for the ear tube procedure the following week. Also on Tuesday we will be going for our initial HBOT appointment. It won't be the sessions, but just meeting the doctor and going over procedure, cost, expectations, etc. Then we have PT and Tim is FINALLY going to get allergy tests started. On Wednesday we have the CP clinic that they say is about 3 hours, followed by an appointment for my research project, then Casey will have GI clinic in the afternoon. As long as we get the go ahead during CP clinic we will go back on Thursday to start Casey on botox injections. Then PT again on Friday. A very busy week for our little pumpkin.

Still no updates on feedings. We are still at 22 an hour, and reflux is still an issue. We have been tryng some new medications that we had hoped were going to help get her bowels moving and process the volume a little faster so she could take more, but so far none of them have seemed to help. The first one just knocked her out and the second one just made her sucretions really bad.

Tim and I have a date on Saturday, respit care is a really good thing. We both hate leaving Casey, but it is really good for us to get out every now and then. We will post something late next week after all of the appointments are over.