Our family recently moved and it's made me get a little behind on my updates. This is a comprehensive update on everything that's been going on the last couple of weeks!
Paisley had a check up with her neurologist a couple of weeks ago that went really well. The neurologist commented on how good Paisley looked. Most of the time when babies are on ACTH they get quite swollen and often develop a bad case of baby acne. Fortunately, Paisley has not really had any side effects. The only side effect we've noticed has been a slight puffiness whenever Paisley's ACTH dose is changed, but that normally goes away in a few days.
While we were at the neurologist we were also able to schedule Paisley's next EEG which will be November 29 and we will go for the results on December 3. It's only a few weeks away and we're very excited but also quite nervous. We've had to wait until Paisley is off of the ACTH to schedule the EEG. Her last dose of ACTH is November 26 so we're having the EEG on the first possible day.
The neurologist does think that Paisley could have a genetic vitamin B12 deficeincy. She has referred us to a geneticist who we will go see to decide on what treatment plan they want Paisley. I'm not really sure what all this visit will include but it doesn't seem to be as serious as the other things we've faced so we'll just see when we get there.
Paisley also had her 9 month 'well baby' visit since my last post. It was so nice to go for a 'well baby' visit since we've been going to the doctor so much just hoping we don't find out something bad. Paisley's pediatrician said that Paisley looks great! She weighs just over 20 lbs and is 29 inches. Overall the visit was wonderful. The pediatrician did ask that I talk with Babies Can't Wait about having a speech pathologist work with Paisley. Paisley isn't a big fan of eating solid foods and she sometimes has problems with finger foods so a speech pathologist would work with her to develop her eating skills.
Babies Can't Wait is finally going to stop making Paisley wait!!!! Her first physical therapy session is tomorrow morning. Last time they came to meet with us they set Paisley's short term goal as being able to sit unsupported for an extended period and her long term goal as being able to crawl. Our case manager told me that they want Paisley to reach her short term goal within 6 months and her long term goal within a year. Well, Paisley can now sit unsupported for as long as she wants...I'm really hoping it won't be as much of a hassle to change a goal as it was to get the entire process started.
The physical therapist will be here tomorrow morning and will work with Paisley for about an hour. They've warned us that she'll be very tired after so Paisley will probably take a good nap tomorrow afternoon.
That's all for now. I'll try to give everyone an update after the therapy session.
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