So...as I said before we are home and everyone is really adjusting really well for the most part!
So far Abbi has had her first pediatrician well check up, neurologist appointment and ENT/Audiologist visit.
As far as the pediatrician, all went well. She wasn't a fan of the blood pressure but got over it pretty quick and was a breeze for the rest. She gave us all kinds of referrals for everything under the sun and said she was 42 percentile for her weight and 5th percentile for her height, nothing too surprising.
The Neurologist team was very excited to meet Abbi! And she of course was happy to get the attention! After viewing the video we got of Abbi having a seizures (not too worry, as parents who have been through this I PROMISE this is very valuable to her doctors and we made sure she was safe while we did it, I have gotten strange and surprising looks when I have told people we videoed them before :)) her neurologist was not sure if it was a seizure or panic attack but set us up to schedule an EEG in the hospital (YAY :/ Needed and expected but never fun lol). She also agreed that Abbi has a mild case of CP or cerebral palsy, being that the one side of her brain is smaller than the other and also the one side of her body is effected. We changed up her medicine. by reducing it for the time being, until we know more of what we are looking at, which I was fine with because she was on more than Nina! Her neurologist is also trying to get a doctor in to do a scan on her liver while she is in for the EEG since her records indicate that she has a mass on her liver and we want to cross that off our list.
The following week we saw her ENT/Audiologist and had the booth hearing screening where they said her China records seem to be close to accurate with her ABR hearing test, moderate hearing loss in one ear and severe in the other. But they also said she does have fluid in her ears which could be affect her hearing. So she is scheduled for a sedated ABR, MRI, ear draining and tubes for the end of August. (NOT looking forward to that! I know, I went through brain surgery, but this is a different kid and lets face it, it is NEVER easy!) The doctor said his best guess is that Abbi will be the best candidate for hearing aids at this point, unless for some reason her hearing gets progressively worse during all of this which he does not see as likely.
SOOOOOOO, a lot is coming!!!
Nina's update. Well...Nina's side of the appointment is the one that left me in tears. Nina is still having about 4 to 5 seizures a day, but thankfully they are mild. So not really hurting her development, but not helping it either. So we increased her medicine, but honestly so far we are not seeing much change for the good. They are only seeming to be lasting a little longer...hit or miss this game of changing meds. Josh had tried to get some more insight as to why developmentally she still has not come around but her neurologist said she does not know, that usually after six months, anything that was lost will have come back at this point. She told Josh, this may be as good as it gets. So this leaves us frustrated, sad and so angry! Sad because we still are not even sure if any of it was worth doing! Nina was a girl who laughed at everything funny! She was talking and dancing. She was playing and learning and singing with me! She even said I love you! Now we feel like we stole that all from her, and for what...I wish I had answers for people when they ask if we would do it all over again would we still do the surgery. I want with everything to say yes...and maybe there is more under lying benefit that we are not focusing on...but right now...we do not see it. I have so much anger but angry at what?! Who?! The doctors for telling us it was the best thing? But that does not make sense because many kids with TS have this same surgery and it worked wonders for them! The surgeon? Could he have done something wrong, how would we ever know?! But this has been done on so many kids, and they hardly ever regress the way she has. Sometimes I want to be mad at God. Why would He lead us down this path to surgery, only for it to end like this?! But I know He grieves Nina's loss as well. In the end, with no where else to point the blame, it falls on me. We agreed, we went forward, and maybe we did not know enough of the risks. The brain is such a tricky thing and with as much trauma as Nina has gone through in her short life, another one like brain surgery may have been all she needed to push her way back. We do see glimmer every once in awhile. Just this last week I had her pulling her pants up. Something that SHOCKED me how easy it came to her and how much it looks like she has never stopped! Since Abbi pretty much came home wanting to use the potty, we have been sitting Nina on the potty as well. We have been having some success with it and she has had good days and bad. And when she succeeds she honestly has the look in her eyes like she remembers doing it this way once. It is how I have always imagined, a stroke patient after they lose all of their normal daily abilities and have to awaken their brains and remind themselves that they know all of this would look. It is a fascinating thing! But some days, just as quickly as she gets something, she loses it again.
Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the your God will be with you wherever you go.”
I do still struggle with the guilt of losing the child Nina was, and I know this is a burden I can not bear, my head knows all of that, and one day soon I hope my heart will believe it as well!
Thank you all for your love and prayers and support! xoxox
**Here are a few of my favorite videos of Nina pre surgery for your viewing pleasure! :)