LOVE

Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.

James 1:27


He predestined us for adoption to sonship through Jesus Christ, in accordance with His pleasure and will— to the praise of his glorious grace, which He has freely given us in the One He loves.

Ephesians 1:5-6


Learn to do good. Seek justice. Help the oppressed. Defend the cause of orphans. Fight for the rights of widows.

Isaiah 1:17

Tuesday, July 21, 2015

WE ARE HOME!! Part 2 The Medical side of things



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.

Joshua 1:9Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”


videoI know my God is not finished writing Nina's story. I know He has big plans for her even if we can not see them yet! He sees her tomorrow and He is standing there smiling! And I can not wait to see them unfold!
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! :)

video

Wednesday, July 15, 2015

WE ARE HOME!!! Part One

We are HOME! Nothing better then your bed and your family around! It has been two weeks but it already felt like our journey to China and back was a life time ago!

My awesome sister in law, travel companion and helper!
What started as a picture of  Emma and Abbi turned into a photo op for a family with "The American's"
BEAUTIFUL (at least from the airport) Hong Kong! I hope to go see more of it some day!
Waiting waiting waiting!
Emma loved her journey!Like any child she will tell you her favorite was eating donuts for breakfast and eating McDonalds for dinner (I know great parenting) and staying in a hotel! There were some moments where I could tell she was done with the hotels and food and strange paces where people stared, (especially when we made it to Texas and got delayed) but honestly she blew me away with how much she tolerated in China! It was a growing moment for sure.

Abbi did AMAZING on the flight home!!! She slept pretty much the whole way and when she didn't sleep she was in a great mood most of the way! It was when we got to Texas that she was up and down bug honestly we were all pretty done at that point and praying that we would get a fight out! That last leg of the trip was the hardest last time and for sure this time as well.  Jet lag did not disappoint-to bed at 12am woke up at 3am for the day :/ Emma on the other hard bounced back pretty quick! Must be nice!

Together at last!



My 3 four year olds!


Levi LOVES his sister!


Daddy took 5 of the 7 camping in the back yard.



A sweet friend of ours invited our adoption  mamas group to bring our families  to her Fun Works place. It has arcades, go karts, water balloon catapult, mini golf and batting cages! Jen has a sweet heart for adoption and special needs children and has offered such a gift to us! Adoption and special, needs lends it self to a sometimes life filled with therapies, doctors appoints and lots of crying as we work through grief. Jen gives us a chance to just be a family! Jen THANK YOU for being God's hands and feet! I know your humble spirit but never admit to it, but you are giving our families a HUGE gift!








Precious-Chosen-Loved-MINE

Celebrating Isac and Nina's birthday's!


Abbi has adjusted so so well! The three older girls just love her go death and all her sweet Abbi-isms. Nina tolerated her for the first few weeks but now we are starting to see some signs of regression. Which is hard to watch since we have gone through regression a few times with her already and I just wish I knew how to help her through it, but we will. Because Nina has regressed since her last hospital stay, food is sacred to her, no ones food is safe, unfortunately Abbi's either, and being she just came from living four years of hoarding food, well it can make meal times interesting. Also Nina still does not grasp personal space, so when she walks she pretty much barrels through who ever is in front of her. For the other kids, this usually is not too big of a deal (aside from Isac, it drives him nuts), but can cause some interesting issues between Abbi ad Nina. All issues that I am sure over time will work them selves out. Levi LOVES his new sister!!! And she him! Which I was not too surprised by given how well she welcomed Nina and Isac, He is always looking out for her, wanting to give her food and toys and helping her out if she falls. Isac is a pretty passive kid. He likes Abbi, and will play with her but if a person is not returning the attention the same he becomes uninterested and being Abbi can not talk, it makes it hard for her to communicate that to him. And Abbi is head over heels for her daddy! It's as if she has been waiting her life for him! At first that is all she wanted but it has gradually evened back out.

Since home, we have already had Abbi's and Nina's Neurologist appointment and pediatrician visit.
I will update more on that in the next blog!

Thank you all for your prayers, love and comments! Some of them truly kept me going some days!!!!