Kiera can be so funny!

Every since we took Kiera off the Topamax she has really been using her eyes much more and seems to smile and laugh more appropriately!

We were waiting in the waiting room at the orthopedics clinic and as one family was walking past us, Kiera looked right at them and and made a sigh sound, but sounded like a "H' sound, the mom looked at Kiera and responded to her sigh with a "Hi"
That to me, as Kiera's mother, was the best feeling, someone responded to Kiera as a person, not a wheelchair with a body in it.

Yesterday we had the final fitting of Kiera's left foot AFO (leg brace) after the edema has gotten so bad and we are not seeing any changes with it so far, thus making it impossible to wear her old one because it is just too tight.
So now she has both braces adjusted, so she is back in them.
Her right foot has turned in some since she was not been able to be braced for so long, her Orthopedic Spec. told me what could happen if that continued and it was not good, basically the calf muscles could contract so that it would turn her foot in even more and her heal cord would also shorten. This foot, Kiera has never needed surgery because it has always been flexible. I am glad that she is back in her braces.
While she gets up into her stander we will have to place a thin book or something like that under her brace at her toes, so this will flex her foot to give her a stretch that will correct this issue.

We are not ready to go into the stander quite yet though...on Monday we go to see the spec. that works with Kiera's TLSO, this too needs adjustments to accommodate the edema, I only hope that we don't have to start from scratch, UHHGGG! If that would be the case, it will be another month before she will be able to get back into her stander.
And we have another issue going on, her right hip is now 50% out of it's socket, we just noticed this about 1 month ago.

When we finally can get back into the stander, I am going to go to our clinic with Kiera and her stander, I want to get her up in it and have the PT evaluate how we are going to introduce this activity back into Kiera's routine, so she will be safe and without pain. I will ask for a stander schedule to work her back up to where she was before with this.
I also want to get an x-ray of Kiera while she is in the stander to see what her hip is doing.
I can not stand the thought of Kiera going through hip surgery again. the pain level of this surgery is right behind back surgery.

Last week we went to see Kiera's PMD (Physical Medicine Doctor) this Doctor is the one that gives Kiera the Botox shots in her left calf muscle, she noticed that Kiera's left foot was turning in much more again (due to not wearing her leg braces) so we used a bit more of the Botox in hopes to get better results.
We also, at this time talked about Botox in her jaw muscles to help with her teeth grinding. this Doctor does do this, she said that it can be very helpful, but was cautious because of Kiera's issue with secretions. She felt Kiera's jaw muscles and commented that they felt like a rubberband, they were very tight, and given the fact that her teeth are now like pancakes in the back, she explained to me that if this got worse, Kiera's back teeth would wear down so far to where she would, or could loose them so if that were to happen and Kiera is still grinding her teeth, she would eventually be grinding on her jaw bone, YIKES!!
So we did it, Kiera HATED the first shot, but I think that was because I was holding her still, and you know, most girls with CDKL5 are in constaint motion with her head.
But the second shot she handled just fine.
So we are keeping our fingers crossed in hopes that this works.

As far as seizures go, last month she went for 9 days without seizure activity!! yeah!!! that was between the 17-27th, today she is on day 3 without seizure activity.
We are again titrating down some with the Lyrica in hopes to lessen the edema. I think that the edema is still progressing so I have a feeling that she might have to come completely off to correct this problem.
We are going to see her new Epileptologist this coming Thursday, I am going to bring information about CDKL5 because I think that the more she understands about this disorder the better we can work together and start to take Kiera off more of her medications.
The keto diet is showing better results than medication with a small population of girls affected with CDKL5, this gives us hope.

Next week we are again, full of appointments. Kiera has appointments every day next week besides on Wednesday. Monday morning is going to be a very early one for Kiera, she will have to get up very early witch she does not like and then be fussed with, again is not a fan of when she does not want to be up! and then drive in morning rush hour, Yuck!
This will be her appointment for her TLSO, this is always a full day and is hard on Kiera, not looking forward to this day.

lets see what next week will bring.