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

Sunday, November 1, 2015

Three Years Ago Today

Three years ago today I watched amazed as few friends brought home children from different parts of the world. Three years ago today we had a one year old who made life...more busy. Three years ago today God stirred our hearts to make a huge change (for us) and leave our church family of seven years (as a married couple, 17 years for me).Three years ago today, God was whispering His promises in my ear that we can do hard things. Three years ago today I doubted His words could be true of ME. Three years ago today, Josh was settling into his job, we were complete with our family (at least for the time) and we had plans to start saving to build our dream one day, we could have the room to adopt children into our family. Three years ago today, that someday became today! With fear of the unknown in our hearts we submitted our letter of intent to adopt our sweet girl and received pre- approval for our sweet Nina!

Thus began a journey of fundraising, paper work, researching, late nights of thinking and worrying about my girl, more paper work and a journey to some of the dearest friends I still have today, my adoption friends. I felt like this part of the journey had to be the hardest part ever! Once I had my girl in my arms, we could get through anything!

But in 3 years, a journey through learning about Tuberous Sclerosis Complex, countless doctor, therapy and hospital visits and three brain surgeries later, I can say that it was for sure only the beginning of learning, growing and honestly, exhaustion.

Nina has grown all of us in our family! If I could only tell you the joy I see on peoples faces when they see her. She is all love that child! Despite all the pain and suffering she has lived through, she still gives more than she receives. There is nothing that makes her smile bigger than being next to and hugging someone.

Nina's life has taught me to enjoy each and every moment of life. There are times since her surgery where I have seen a spark of the Nina before surgery come back. With a word, with an attitude or simply with a small task like climbing up the play ground ladder or the smile a swing can bring to her face! But often times those moments fade and I wont see them again for months, or maybe not at all again. My heart aches for the small moment that was a spark of encouragement and hope in my heart, but each and every time, I hold them more and more precious.

Nina has taught me great patience. The girl is as stubborn as they come. No doubt a life of living in the orphanage, where she was the target of older and stronger kids, fighting over the weaker ones to survive themselves, she learned to hold a little tighter to things she wanted to keep. We heeded the words of all of our adoption reading and training, that food can be a huge trigger for children from orphanages, and even children in the foster care system, as it is something that can be often used as a tool against them, or simply not given enough. And this is a trigger for Nina that as soon as we think we have gotten past it, it rears it's ugly head again. The moment she sees me move towards the kitchen, she starts her pacing from the stove to the table, sometimes crying and stomping her feet or the table when it is not coming fast enough. This was a really eye opening and to my surprise, a VERY tough battle for me to work through. Often lunch and dinner in our home are the busiest moments of the day and by dinner, one of the most exhausting parts of my day. To have to muster an incredible amount of patience, a trial I am still learning to conquer. One I had thought we mastered before surgery very well, but has come and gone many times since surgery. I have learned how to handle the situation with more patience and grace, but it may never be easy. But I have definitely learned how to not react to the moment. To breathe and pray for God to pour extra grace in me so I can spill out onto her.

With all of my adoptive kids, I am overly aware of the emotions they may be showing through their actions, as I know that is how I will be able to see their hearts. This has made me so much more aware of even my biological kids hearts.

Nina's life has taught me to stand up and be the voice that she can not be. I have always been one to shy away from any confrontation, even if it came to medical professionals and my children. Simple things like making phone calls ad scheduling appointments, intimidated me, for fear people could see through the phone to my heart and see how unworthy I felt of the calling to be a parent. But staying alone nights in the hospital with Nina, having to be her voice when no one else was there to stand for her, making appointments and fighting to get her into the therapies she needs, has given me more courage to be the mom she and my other children, need me to be.

Through Nina's life I have learned to look at life one step at a time. to look at the future to plan in advance, but not to stay and dwell there. With Nina's diagnoses it is very hard not to become overwhelmed with how many times we will have to think about brain surgery, or when her kidneys may (or probably will) get worse, or what life with her as a teenager or adult may look like, and just focus on what this week and this day has in store. Because one day that future will be today, and those worries may or may not be what we are facing, but for today I want to enjoy where we are and how far we have come, because today is a gift we will never get to live again.

Through Nina's life I have learned TRUE forgiveness. The same kind of forgiveness I am learning our Heavenly Father has for me. Forgiveness that lives, and feels and experiences the hurt or disappointment of someone else's mistakes or weaknesses, and still truly chooses to move forward with a kiss a hug and the actions of one who has forgotten the past. Oh to be there fully myself would be a great gift!

Next week I will be traveling to Orlando with Nina to undergo another long week of video EEG. A sad reality for Nina to which she is attached to wires and monitored through a video in bed for 5 days to catch seizures. I would be lying if I did not say I am both excited to have confirmed what is going on in her head still, but also terrified at how bad they could get when we are there. (Generally they take her off her seizure medicine so we can be sure to get seizure activity.) After that we will have more information (hopefully) to move forward with surgery again. Going forward with surgery this time was so much harder for us to think about, being we have been through it and saw how much she regressed. But sadly, surgery is generally the best results for kids with TS, and many times they have to do it more than once to rid them selves of seizures. All in all, this is Nina's best chance. We do nothing and her seizures continue to get worse, as they have been on every medicine we have tried, and she does not develop much more than where she is at now, or we try to remove the tumors creating the seizures, in the hopes her body has a fighting chance at progressing. What do you do when your options feel like a lose lose for child. You pray for the Lord to do His mighty work in her life how He feels best and pray as you move forward. These are the moments as a parent that you learn, there are not always easy or right answers, these are the moments you just have to close your eyes tight and trust.

Please pray for Nina, as we have been watching her seizures becoming more frequent and sometimes more intense. They seem to be happening a lot more during the night on these meds so Josh and I have her and Abbi in our room, which means little sleep for either of us, please pray for energy and strength.

As for a quick update on Abbi. If you are not on facebook then you have not seen her super cute video of her hearing for the first time! It is amazing! We go to the audiologist and ENT this week to do a hearing test to check just how much she can hear with the aids, but honestly, I am sure it is still not a lot. She too is still waking up through the night, most the time shes been crying in her sleep.  Pray for her and us as we navigate the roads of  trauma, as she seems to show a lot more symptoms of it. She has been seizure free for more than 50 days!!!!!!!! I can not tell you the relief that brings!!!! Having been on the seizure road with Nina, you can imagine how long it takes to truly feel like you can be ready to announce seizure freedom. But I am so happy to be this far!!!
Isac is doing SO awesome in preschool! Little man knows more than any preschooler should already and seems a little bored with learning lol. Pray for his little heart as I do not think he fully understand yet everything about his adoption, but asks questions a lot about "when he was a baby in China".  It will not be long before the dots begin to connect and he is asking harder to answer questions.

Here are some fun pictures and video of Abbi hearing!

Nina impressing me with her climbing skills

Abbi's favorite game in school!!

Beach time fun!
Hanging out with mama!

Playing with Gak we made in preschool-she did not like it at first but ended up loving it!

Having fun on the ball for a little therapy!

Just looking cute!
Nina LOVES riding the pony!

Abbi rocking the stairs!
Nina lost 2 teeth!!!!

My handsome man!

Sunday, September 13, 2015

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 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!!!!
She is getting so big!!!!

Abbi LOVES watching me put on make up!

My silly boys!
Riding Nana's new pony!

Me and my little girls!

Our family loves having some water fun!

Abbi thinks it is great fun!!!

Signing I LOVE YOU

My 3 four year olds! <3

Physical Therapy for Nina

This girl was so so tough and fantastic in the hospital! Everyone was so impressed with how well she handled everything!
Doing an EEG in style!

Noll dance party!
Look at my piggies!!!
Abbi relaxing with big sis!

First day of Pre- K for these 4!
The boys first day of pre k with Nana and their cousin!
Abbi sporting a hawk
She likes getting dirty!!!
Doing a little PT during school!
Matching colors at school

Finding yellow


Tuesday, July 21, 2015

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


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!


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!!!!