Orthotics

Our orthotics appointment went really well. The specialists really worked with Casey a lot and had some great ideas. She is writing up some recommendations, then we just have to get scripts from our pediatrician and then we will be set. One of the main things she wants us to try is called theratogs (http://www.theratogs.com/howitworks.html). Its basically a body wrap that will help mold Casey into better positions. We are also going to be getting some new hand splints and toys that we can use to help stimulate Casey. Overall it was a very good trip. We really like the specialists and she was really good with Casey. In addition to gear she showed us some new positions and exercises to try.

We have an appointment with Casey’s pediatrician next week so we will get the scripts then and hopefully have the gear in the next week or two. Casey really worked hard today and is sleeping like a little angel now.

Yesterday Casey met with her neuro. We have not been real happy with the neuro, and after yesterday we decided we are going to change. We have a recommendation for one that works with kids like Casey. I am going to call and see about getting moved over as soon as possible. We got a new med yesterday. This new med is supposed to help with Casey’s tightness. They said her GI slowness (and frequent constipation) may also be due to tightness. Hopefully this new med will help. We just started it yesterday, so as of now we haven’t seen a noticeable difference.

So much coming up...

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.

Orthotics
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.

Pediatrician
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.

Botox
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.

Hyperbaric treatments
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!

Ear Nose & Throat

Ear Nose & Throat went really well. The doctor confirmed audiologies guess that Casey has fluid in her ears. We have set up an appointment in October to get tubes put into her ears to help drain the fluid. The really good news is that the fluid may account for some, most or even all of the hearing loss that the hearing test showed. The ENT doctor said the report shows minimal loss and that fluid can account for 20-30% of hearing loss. We won’t know for sure for a little while, but it is possible that Casey will not need hearing aids at all, just the tubes. The doctor said they put the tubes in and they stay in for about a year then fall out on their own. It’s routine and Casey has good canals so the doctor said it should be a quick procedure. The bad side is that she will have to be sedated again and we will have to go back to UCLA out-patient surgery. I am going to request the anesthesiologist we had last time. He was great with Casey. Hopefully we will be able to avoid intubation again.

We have our regular GI appointment tomorrow and a few appointments next week. We will post more as we get more details.

Aunt Megan's Visit

Casey's Aunt Megan visited Santa Monica this weekend and got to see her in person for the first time. We got this cute picture of them both in their University of Texas outfits during Casey's first Longhorn game. She is still working on her hook'em horns - it looks like more of a Star Trek sign right now but it's getting there...

Unfortunately, Casey hasn't been able to increase volume with her new tube like we had hoped. Her reflux was really bad this weekend even with increasing a few cc's per hour, so we have backed her off to the rate she was at before Wednesday's procedure. She has her normal Wednesday GI appointment and we will be talking to the doctor's to figure out what is next. This tells us that her stomach is not the limiter, but she is already maxed out on motility meds, so the question is what more can we do about her slow intestines.

Today Casey is at he Ear Nose Throat specialist at the request of her Audiologist. They will figure out to what extent extra fluid in her sinuses (from not being able to swallow) will affect hearing tests and allow us to move forward with the proper hearing aids.

New tube is in

Yesterday at UCLA went very smoothly. Casey had a great anesthesiologist who got her IV in one try, and her G-tube went in so quickly that they didn't even have to put in a breathing tube. We were really relieved at that as whenever they start talking about a breathing tube we know that means going from outpatient to inpatient, but Casey obviously wanted to come home quickly. She recovered enough after the procedure in just a few hours so that we had her home by dinner time, and back on her most favorite spot on our couch.

Now that we have a tube going straight into her small intestine, we will slowly start increasing her feeding rate. If all goes well, we will know that her stomach is what has been limiting her feeding. We'll definitely keep everyone updated on how that goes!

Busy Baby

Casey has been a busy little girl this week.

Today was the first of a few audiology appointment. We did get good news. Casey CAN hear. She doesn't have perfect hearing, and MAY need an aide, but she CAN hear. I was so happy when they confirmed that for me. I always thought she could, but it was nice to be validated. We have to go back at least one more, possibly a few more times before we know if she will need the aide or not. We will keep our readers posted as we find out more.

Casey has gained half a pound. That's pretty good. Her GI clinic and her GI surgeon talked and have decided it would be best to move her to the G/J Tube. This tube will offer a feed into the stomach (like she has now) as well as a way to bypass directly into the intestine. The hope is that by going directly to the intestine that she will not have reflux anymore. Once we are past the reflux we will be able to advance her feeds, and hopefully soon finally get to bolus. I imagine once we start moving her feeds up she is going to grow really fast. The procedure will be on Wednesday. It is an out-patient procedure so she will be home that same day and she will not have to be intubated.

We saw Ortho this week. As for now they are still saying to hold off on correcting the hips. We are going to move forward with botox. The Ortho got us into a clinic that they do every Wednesday morning for CP patients. In this clinic we have access to Ortho, OT, Neuro, and the botox doctors. I will be taking Casey in Wednesday before her GI procedure. OT should be able to get her new splints, and if we like this Neuro we will look at transferring her over. We don't have a problem with her current Neuro, but it makes more sense for us to get them all in one rather than having to bring in an outside party. I am glad we are in this clinic. As Tim pointed out, not only will we have access to the medical resources, but we will also be with other families with CP kids.

We have been battling our supplier (AGAIN) and have finally found a new one. With my insurance being terminated as of today, Casey has been switched to Tim's for everything. So it was a good time to get a new supplier. It was a lot more work than you can imagine, but at least its done. We should have her new equipment next week. Once we get it we will call the current provider and tell them to come get their stuff. We can't wait, that is going to be a great call.

With the CP clinic being Wednesday morning and her GI clinic is Wednesday afternoons her current PT session were set up for Wednesday mornings. That won't work anymore so I talked to the PT today about changing her time and about the objectives of the session. She really doesn't seem to have the same objectives as Tim and I and in addition doesn't have a very flexible schedule outside of Wednesdays. We are looking to change PT now. I really hope we get someone that is as good as the PT she had in the NICU.

Tim is in the process of upgrading the camera. So we sold our camera and will be buying a new one soon. For now I can’t take any pictures of the cutie. I will take some and post as soon as we get the new camera.