His Grand Design: More Updates on the Noll Clan

*It is a long one but I promise lots of picture at the end!!!

Well blogging just hasn't been in the stars for me this last adoption like I wished it was. But here I am again, getting a chance to fill in more updates with the little time, and many interruptions, as I can.
So after some crazy days in the hospital we were able to get Abbi an, EEG, MRI of her brain, ear structure and liver, a CT scan, draining of her ears, tube placement and ABR. And sense we were in Orlando they ran a MEG scan on Nina. A MEG scan uses magnetic waves to try and find places that there is seizure activity. She and Abbi were both under anesthesia in two different places at once, Josh in one building and me in another, it was nerve wracking to say the least.
Nina's results showed us pretty much what we had already known, major areas in both temporal lobes and right frontal (right behind where they did the resection), but now they had a good visual of it.
The first day Abbi did not even have one seizure. I was not too surprised by this. for one because Abbi's are so random and she could go days without seizures but also because whenever we take Nina off her medicine it usually days a full day for there to be any change. So our neurologist came in and said she sees no seizure activity but she has another day and more test in the morning so we will just keep her hooked up. I was disappointed because I was sure I was seeing seizures and I wanted some answers to what was going on in her little head. I knew it could not be behavior, my gut just told me it was more. Abbi had to go down for a CT so they could get a better look at her liver since the Oncologist was not really sure from the MRI what was going on in her liver. To go anywhere you have to be unhooked from the EEG monitors. And true to seizures, we unhooked her, got in the elevator, and she had a seizure!!! I was screaming inside! But I kept telling myself, at least there are nurses here who saw and can report it, she doesn't usually only have one, and as much as I hate that she is not connected she has to get these other tests done. I just prayed like crazy I was right about her having more that day. Because she had just had a seizure, she slept through the whole CT scan which was nice. We later got confirmation that the mass was what I thought it was, just a benign mass that has a blood clot in the middle of it, making it look like something other than benign. But it was no danger to her.
Through out that whole day my prayers were answered, Abbi had seizures allllllll through the day and night. While I hate that she had to have them I was very happy she had them while she was being videoed and monitored. The neurologist came in the next morning and confirmed that there was seizure activity coming from the left side of her brain, which is completely damaged, and spreading to the right side. And she said like any seizures, you want them stopped so the brain does not make this a learned habit to the point that nothing will stop them. Her recommendation is to try at least three different medicines to try and stop the seizures. If she is still having break through seizures after that, her recommendation is to completely separate the left side of her brain as it does not seem to be performing any other function aside from causing seizures. But , as she said, let's go down the medication road and hope for the best and not think about brain surgery. But how can I not!
DEAR LORD NOT BRAIN SURGERY AGAIN! My mind was completely numb after having that conversation. The thought of walking that road again with another child is...well terrifying! I am praying like crazy and hoping that is not even an option. So for now I focus on the other things I can control...right?
HA! So Abbi goes in to get tubes put in her ears and have her ears drained, and then they do an ABR test, which is a test to see what the brain is hearing. The ENT comes out to tell us the ABR results state that one of Abbi's ears is hearing 100% and the other is hearing moderately! Great news right?!!?!?! Except that Abbi is still not responding to ANYTHING! More mystery. The ENT thinks it is the damage to her brain, so it must be a brain thing as the MRI revealed that the structure of her ears are perfect, and the neurologist thinks it must be the ears as her right side of the brain has adapted to everything else, surely it would have adapted to her hearing...so who knows...we continue to teach her ASL and search for answers.
Last week Abbi had her first physical therapy evaluation done and they want to fit her for a brace to help straiten her foot and leg out. She will start speech this week. And last week I started doing homeschool with Nina and Abbi! (The boys are doing preschool with Nana 3 times a week and me two times a week.) The week of preschool proved to be tough as I am learning to adapt it to the girls because on days of a lot of seizures, neither one of them are awake much of the day. And it did not help that Abbi was covered in a rash from head to toe for 8 days because of an allergy to her seizure medicine. :/ Homeschooling them though is giving me and them the freedom for days when they are having a lot of seizures, to do my own PT, OT and Speech with them (ideas I am getting from their private therapist) and more bonding time with each of the girls. While I struggle with the thought that having them in school all day with professionals may or may not be better than I would be, I also know both girls went a very long time with out a mommy and I want to try and make that time up for them for as long as I can!
Please pray for the days to come. We have follow ups with all of the doctors coming up and I am anxious to get to the audiologist again and figure out our next steps. PLEASE PLEASE pray that Abbi's medicine starts really working well. Since we had to get off her first one because she was allergic we are on drug number two so I am hoping this takes care of the seizures.
Abbi continues to THRIVE as a Noll! It is as if she walked out of that orphanage as if she has been waiting for that day forever and has not looked back! She is super sweet, and happy and such a little toddler!!! She is always trying to please and make people laugh and LOVES to help with whatever task she can! She is still sleeping in our room and has nights where she cries in her sleep often. It is absolutely heartbreaking to not be ale to erase those memories for her. There are those moments when she gets really hurt and you all but have to chase her down so you can love on her so she will understand she does not have to deal with pain alone and nights when I hold on tight to cuddle because she had so many years of putting her self to bed. Often times to fall asleep she would rather find a spot on the hard floor, curl up in a ball and hum and rock herself to sleep. NO MORE baby girl, your mama is here for that!
But I can not wait to see what God has in store for this sweet girl!
Please also pray we can get Nina's seizures under control. While her seizures are pretty mild most of the time, she still has so many of them! She continues to blossom as well and we are always seeing glimpses of who she was!
Isac is such an amazing kid who is doing great in preschool. My mom says he never looks like he is paying attention, but if you ask him a question, he can tell you just what they learned that day! Please pray with us that we can teach him how to open up more. While I think that Isac had a good life in his foster family I think there is a lot of things going on in his subconscious about his life but he does not know how to talk about it.
I praise God for the journey He has us on everyday! I know in our heart of hearts He is not done adding to our family through adoption. I do not know how or when but some day. For now I continue to advocate when I can and pray for those babies waiting and mamas needing the courage to step forward. If you have EVER felt led to adopt PLEASE PLEASE do not hesitate to ask me questions. The journey is not an easy one, but the front row seat to Gods unfolding of amazing after amazing stories and miracles is astounding!!! You will never regret what He can do in your lives and in the lives of those around you!
Thank you! Love you all!!!!