I can’t believe it but our little angel is 1 year old. What a year!!! She is doing really great. Her botox injections were last week. They said it could be a week or two before we see a difference. So far there is not any major changes. Her left legs seems like it may …
After a lot of discussions, we have the doctors agreeing with us that Casey is better off continuing her recovery out of the hospital, so we brought her home today. She is so much happier with all the noise and people bothering her and wires all over the place. She is already moving around a …
Good news – we have finally been moved out of ICU and into a normal room. It looks like if all goes well we will be going home next week. Casey is still having problems with apnea, but the pneumonia seems to be almost gone, and she is much more comfortable since a few of …
Well, finally yesterday they decided to try Casey off the ventilator, since she had a couple days of lab work and chest xrays getting better. Since they took out her tube, she has been having a lot of trouble keeping a consistent saturation of oxygen in her blood – nothing extremely low, but below the …
As many of you know, Casey was taken to the UCLA Medical Center on Monday after having difficulty breathing. They admitted and gave her oxygen while they waited for xrays and test results, which showed that she had an infection in her chest. Pneumonia has always been the biggest risk for children with severe HIE …
We are back in our hotel room in San Diego and relaxing after a long day – here’s a play by play of our trip to Mexico: Someone from the US research institute picked us up around noon at the hotel. He had a nice minivan so transferring the car seat was very quick and …
Well, there is less than 1 week remaining in Casey’s 40 hyperbaric oxygen sessions. We have seen a few little changes over the past couple months. She is now able to take the occasional bolus feeding (sometimes up to 80cc at once), crinkles the corners of her month at times, and even managed to flip …
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 …
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 …
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 …
