I got my second wind (as usual) so here is an update.

We went down to Boston yesterday and the Epilepsy specialist (I know there is a specific way of saying it, but I can't say it right) lol  is being very aggressive with her treatment.  He does not know what is going on, but has ordered every test under the sun to try and figure it out.  We got the Lab work done last. After our visit to the GI. One test came back really high and that was ammonia.  (The genetic testing will take longer) He called our primary care Doctor early today and asked that we have that level rechecked to make sure it was accurate. This assured me that he was on top of things.  We have had to beg for results from the other Neurologist, so this was a nice change.  The high ammonia levels could be from the tourniquet, her being sick (which she is not visibly sick, but both siblings have colds) or the Depakote.

She also has an appointment to have surgery to put the GI tube in next Friday morning. He rushed us right down for an emergency appointment with GI. We got scheduled with the nurse practitioner, but she had the Doctor and nurse educator come in because she needs to get the surgery right away. She is not getting enough nourishment and it is VERY dangerous to eat while having myoclonic seizures. This is the first we have heard about this. Probably because what is happening is very rare and even the expert Doctor with years of experience has not seen this many times. (if ever?) We go down to Boston next Thursday for a pre-op appointment and have a hotel room reserved within walking/shuttle distance to the hospital for 3 nights.

I went with her today and got her developmentally assessed privately. They said she is at a 9 month old level and we will start services, for speech/OT and PT within a month after the GI tube is placed, healed and things have settled down.  CDS has drastically cut services AND many providers won't take CDS kids anymore (because the State is not paying anyone and when they do it is way less than insurance) so it is better just to go through our insurance. The good thing is that she has been doing some of the things she had lost again over the last 5 days. Hopefully that continues.  I wonder if it has to do to the Depakote and ammonia.  We decreased the Depakote and she got some skills back?? hmm.....  Our goal is to get her back to where she should be and make sure no more regression happens.   After the developmental assessment we had to go and get her blood drawn again  to check med levels and the ammonia. Poor baby had lots of blood taken from her over the course of two days. Lucky me gets to hold her while she screams and cries through it. (sarcasm) 

Our insurance approved the Specialist in Boston for 6 visits this year so he will be our primary until she gets all straightened out.  We will move the GI stuff up here since we will have to go to a feeding clinic often etc...
I am happy we are moving in the right direction, scared about the surgery (I don't want to see my baby in pain, but I want her to get nourished properly and not aspirate on food) Hoping for uneventful test results. It sort of feels like the Type 1 Diabetes thing again except we get to prep for it. 

Thank God for Scrapbooking club and Kindercamp.  Kailyn was convinced she was too sick to go to school and was fighting with us tooth and nail about not going until I reminded her she would miss her first Scrapbooking club meeting. She stopped the screaming and crying and off to school she went.  Sam LOVES kindercamp so it is very easy to get him out the door.   It also allows me to go to these appointments sans Sam. lol

Keira is still the happy, bubbly, easy going baby that she always has been.  Everyone tells me she should be a baby model and my reply is "We don't have time for that". I'm not sure if they tell all the babies about to get their blood painfully taken from a stranger how pretty they are? I am starting to think they might because it happens so often. lol She was saying Momma again a few days ago (babbling), Dadda constantly and waves and says hi inconsistently again.  If I have her trapped in her car seat I can get her to give me high fives sometimes and she gave me a "so big" once.  Her brain knows what these things are and she wants to do them, but her body won't let her.  She even shakes her head no if she does not want to try.

I am exhausted, but I still have energy to move the sun and the moon for my kids.