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 …
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 …
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). …
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 …
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 …
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 …
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 …
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, …
4 Months Old
Lots of updates for this post… First and foremost, Casey is 4 months as of yesterday. And, the cutest 4 month old EVER!!!! Casey’s PT has finally started up. The program is very short handed, so even though she qualified for 2 sessions a week they can only promise one. The PT then calls when …
10 pounds / 23 inches
Sorry it’s been so long since we have posted – it’s been pretty busy here. Casey has finally passed the 10 pound mark and looks so much different every week. She is still usually at 20ml/hour continuous feeding and she isn’t gaining nearly as fast as her doctors want, but the surgeon and GI doctors …