The Study is done!!!!!

I just got an email from the doctor at BCM, she said that the paper is done and sent a copy to us!
A lot of it is hard to understand, but it's so nice to have something like this to give to Kiera's Doctors.

last Monday, Kiera had her appointment for her TLSO, thankfully it was just getting adjustments for now.
Tuesday Kiera saw a Stoma nurse, she has a rash around both the G and the J, the nurse thought it looked like yeast, just like the GI Doctor did a week ago, so she is on another med for this.
Today (Thursday) we saw a new epileptologist, she seems to be a great fit for us. she was very interested in Kiera's diagnosis of CDKL5 deletion and will learn anything she can about it. We gave her all the information we had and a copy of the BCM study.

She is willing to take Kiera off her seizure meds (yeah!) We will start that as soon as we get her other issues figured out, ie: menses every 2 weeks, increased weight over the last few months.
It's good to be back with this epilepsy group! (MEG)
Kiera slept all through this appointment because of getting her rescue meds time 2 today, but in a way it was okay, if she was not sleeping, she would of had a lot to say!!! At least we did not have to yell back and forth because Kiera just doesn't seem to take her turn! Haha!

Tomorrow (friday) we see her dietitian, she wanted us to try other things to help Kiera loose the extra weight before she would tweek the diet, but we are in a catch 22 right now because Kiera is having her menses every 2 weeks and because of that she is having more seizures, so we put the lyrica ween on hold to try to stabilize Kiera a bit, but Kiera is continuing to gain weight, soooo, we need to do something and soon, her afo's and TLSO have already been adjusted to accommodate the extra weight, but when you gain weight, your seizure meds need to be adjusted because the dose has to keep up with the weight gain, this is just crazy! So to me it makes since to decrease the calories in the diet, but it is the keto diet that is used for seizure control, this can get so confusing, UUURRRGGG!