Way back on August 21 we had a craniotomy facial day at Children's Hospital. When I say "day" I am not exaggerating. We arrived at 7:30am, Emma and I. We headed straight into Ear, Nose &Throat, for a follow-up from 2 months ago.
When we went back in June Emma had some fluid in her ear, so the doctor wanted us back in 2 months to determine if we needed to put more tubes in. Thankfully, the fluid drained by itself, and Emma was discharged, to return as needed. Praying we don't see frequent ear infections over the winter!
Then we went across the hall to Cranial-Facial (plastic surgery). Here a team of doctors follow patients with a range of cranial conditions. In the waiting room it is hard not to be thankful that Emma did not have some of the other conditions.
In summary, we saw the following professionals in the hours between 9am-3pm:
Ophthalmology
Plastic surgeon
Orthodontics
Psychology
Audiology
Growth
Genetics
Plus a couple of nurses!
Audiology
Emma was a trooper and only really complained when she was getting hungry (at lunch time!). We got all of 25 minutes to grab lunch - and the cafeteria was a long walk too! She had time to eat a couple of chicken fingers and fries, and we had to take the chocolate fudge cake with us! (She earned every unhealthy calorie, and probably burned it off walking between all the offices!)
As for news, her plastic surgeon introduced a completely new suggestion. It always concerns me when a doctor mentions something for the first time, after 7 years of appointments and various relevant questions, why has it never come up before?!
Anyway, he told me he wanted to have orthodontics put in a palate expander. Emma has a narrow mouth and her palate arch is very high. Combine that with a small, partially paralysed tongue, and no lip closure, you can see why that might be an issue!
The plan is to expand the top palate width, which will pull the roof of her mouth down and also allow her protipruding front teeth to pull back (with braces). That in turn will let her top lip come down slightly more - wait, he said there was nothing we can do about the top lip?! See what I mean!
Emma's bottom jaw is already recessed and will need a jaw distraction in the future, but we will also need to expand the bottom palate so the teeth continue to line up.
I was a little freaked out. Firstly, never heard of this. Secondly, how might this impact the therapy clinical trial we want to do.
I was actually posting a play by play on Facebook and was encouraged to see so many of my friends say they had a palate expander when they got braces! That was great.
When I got home I contacted the therapist conducting the study she said it would exclude Emma from the study, but if we could postpone it for 6 months we'd be good. We will postpone.
We met with a osychologist for the first time, since Emma is getting to that age where kids can be mean etc. He was very impressed with her, and we discussed our strategy for raising awareness, supporting her and how we see things. He said that we are doing everything right, which was so great to hear! He did try to teach Emma that when she does have to tell people about her condition to keep her chin up and look them in the eye. Not sure she got it as when we tried to practice she kept looking up at the ceiling!
So, we got done at 3 and headed upstairs for an unrelated appointment with the sleep doctor! Scott was finishing work at that time and met us there.
This appointment was to discuss the restless leg syndrome that they diagnosed after her sleep study. But we also wanted to discuss Emma's sleep walking that we had been paying more attention to.
In summary, she does not have restless leg syndrome! The sleep study alone can not indicate RLS, and Emma has no other symptoms. Thankfully.
The parasomnia can actually be linked to disrupted sleep habits, and sleep deprivation. That makes sense because the kids have had a very relaxed schedule over the summer. That all changed tonight, as the kids went to bed at 7!
Emma was very relieved to get out of there about 4pm, as was I. She really is able to persevere, and got her just dessert!
No comments:
Post a Comment