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, March 8, 2016

The Miracles of Our Sweet Girl BUT the Realities Of Our Tomorrows: The Answer to How is She



So we are home! What a great mix of emotions! Some of you know what a roller coaster we were just on with Nina. Having two brain surgeries that were rougher than anticipated, then being sent home only to have to go back because she was having 7 to 8 seizures a day, then facing yet another surgery.
After grid placement surgery

not thrilled about therapy
after resection
Trying to hug her way out of therapy

Good bye!
Got a chance to break out of the room for a little walk!

Miserable at home


Learning to eat again...after just a few days she has been using her fork again!
A few visitors




Surgery number 6 here we come :(

 After many days (or it felt that way anyway) and going back and forth they saw that the pressure on her brain was too much and she needed another surgery to put in a shunt to drain the fluid from her head. Something I wrestled with since our surgeon said, shunts served their purpose but came with their own set of problems. And if you know anything about Nina's story, it seems like if it could go wrong...it probably would. They also did an EEG for a day and found that seizures were now coming from the LEFT frontal lobe... :( So they changed up her seizure meds to get more control. We were released from the hospital and I surprised my husband and kids by showing up without them knowing. Sadly though the surprise was over shadowed by the fact that Nina had thrown up the whole way home and now had a huge lump where her incision was on her belly from the shunt... You can imagine how worried and heart broken our kids were. They sent us home after many tests and thought maybe her body was just getting used to the new pressures, come back if she is still throwing up...yes because we so enjoy 4 hour car trip with a puking and miserable child.
Needless to say she was still puking so the neurologist and surgeon just told us to come in the office and they would look her over. They turned down the shunt to keep as much fluid pressure off of her belly and gave us a plan to keep her "regular" thinking the two was probably putting too much pressure in her abdomen, and also added a second seizure med since she was still having at least 2 to 4 seizures a day. Her left hand is still very weak and she will not use it for much but seeing how much her leg has gained its strength back, I have no doubt her hand will follow soon.
I am happy to say she is now home, NOT throwing up and has NOT had a seizure since!!! And beyond all of that we see our girl coming back!!!!! Since the last surgery Nina has not laughed much, and if she does it was not usually appropriately. Now our sweet girl is enjoying being chased by siblings, cracking up for zooburts and tickles and just seems SO MUCH HAPPIER! It is amazing to watch! She is actually trying to communicate with us! She is still so far from actual words, but we can tell she really is trying so much more than she did after the last surgery! If she sees a toy she wants she runs excitedly to it! And in so many ways she is still a lot like an 18 month old. She still has the same obsession for food but I am seeing far less tantrums over not getting what she wants right away! I am truly seeing the girl we lost after the last surgery! I am thoroughly enjoying my sweet girl and seeing such light behind her eyes!
Two weeks since surgery! I look great!

So why the BUT? Well, while we have only lived with Tuberous Sclerosis for 2 1/2 years, we know the journey. While I would love to continue to bask in the success of the surgery, I know the reality of what we are facing. Nina has so many tumors on her brain that they are constantly fighting for position of top dog in her brain. So while she has 4 less tumors, there is now the one in the left frontal who is now top dog. our prayer is that one is controlled by meds. And that no more grow any bigger to fight for more control. Sadly, this just is TS. And while we could eventually hopefully one day see nothing growing in her head, they can pop up anywhere, and are most common in the kidneys. I have many TS mamas who face this same battle. You wrestle with the thought of major brain surgery, go through with it and wait. They get excited over seizure free days and moments of time where their kids can be kids! Where they can learn to take their first step or say their first word/ Where they finally get a chance to break through the cloud of seizure activity constantly attacking their little brains and can acknowledge their love for their mama or realize these people living with them are siblings who are fighting along side of them. Only to be hit with a seizure that charges up their brain and often times takes back all the ground they had gained. It is heartbreaking. It can be paralyzing waiting for the shoe to possibly drop. It is overwhelming knowing any new seizure that starts popping up can look and act like no other seizure they have ever had, making you second guess almost every new move your child makes. But this is just her reality with life of TSC. It is a waiting game, not usually, it seems, for if they will come on again, but when.
But we are not without hope. Our Father has SUCH great plans for Nina's life! You can not even imagine the number of people who remember Nina and her story from her last surgery! From recovery nurses, food service, cleaning ladies to nurses, doctors, therapist and anesthesiologist! All of the lives this girl is touching! And all of the ways we were touched through this hospital stay. I can not even beginning to describe how overwhelming the love was for our family and our girl! Josh and the kids, and I had meals delivered almost daily from friends and family! A friend of ours and his mom came to our home and cleaned it all and gave the kids new bed comforters! Then his mom came back for a day and folded all of our laundry! That was the day we ended up going back into the hospital. The two of them then went to our church and told them we needed a new washer and dryer (guess they did not love cleaning the same load 3 times before you could dry it?) and they surprised us with the biggest washer and dryer made for a home! (THEY ARE AMAZING!!!) We had calls, texts. visits and messages sent daily to encourage us! Thinking about how God's hands and feet stepped up was overwhelming! And we can not THANK YOU enough!
There is still a lot of adjusting going on to life resuming, and I would be lying if I did not say that adjusting back to life outside the hospital has been tough and a million days of constant catch up. But we will get there! I deal with a lot of anxiety since her first surgery that the stress of this new surgery brought back, and though Nina is so much a happier child, she is still like an 18 month old at the height old a 6 year old, able to grab anything and everything she possibly get her hands on.

So pray our family finds its grove again. Pray for a cure for TSC. Pray for strength for me. Pray for continual healing for Nina.

Oh and Abbi has her cochlear implant surgery in May! Excited and nervous for that!

Thank you all for your love and support!


Thursday, February 11, 2016

To all those watching from the outside...

To all those watching from the outside...

I would love to tell you my strength was that unlike yours. I wish my heart and mind help the patients you think some how I possess. The kind that could handle a whole room of young kids and never want to throw in the towel, to throw my hands up and say I surrender. I would give anything some days to be that person so many people think I must be to walk the journey we are on in adoption, in having a big family and in handling special needs kids. But I fear you see me. That strength, that patience and endurance, is not me...it is Christ. This is a concept that I am only now really understanding more and more about myself.

You see it is tempting to believe you. It is tempting to think I must be patient to have so many young kids, or I must have such strength to agree to bring more children into our family and stand through the fire with Nina's surgeries and battle Epilepsy. But I am just as flawed, just as weak and just as impatient as many of you are. It is in those moments that I become more disappointed in myself because I am relying on ME to be those things...when I am not. Those are just moments I took the reins of my life thinking I CAN DO THIS by myself.  I can promise you I never imagined my life journeying the way it has turned out, I never thought for a second that I myself held ANY of the right qualities needed to be where I am today. And you know what, I do not think God cared if I did or not either. He saw me, His child, created to be a vessel on this earth to be used to bring Him glory. He does not need ME to be strong, or enduring, or even patient because HE is all of those things. He just needed me to be willing to be filled with HIM to walk this journey.

I say this friend because I do not want you to miss out! I fear so many are missing out on AMAZING LIFE ALTERING journeys on this earth because we are waiting to be what we think God needs us to be. Do not wait friends! There are too many people counting on you! Not just waiting to be adopted but there are homeless waiting for you to start that kitchen so they can see the love of Christ's church and a smile. There are children waiting for adults to step forward and mentor them, walk with them, and be the adult they never had in their lives. THERE ARE LITERALLY opportunities EVERYWHERE around you! Do not wait till you have time, MAKE TIME! What are you here on this earth for anyway? To serve Christ or to serve yourself?

I will never pretend this journey is easy, that saying yes was not as scary as all get out or that I did not and still do not doubt that maybe I am not all I need to be on this journey. But that is exactly what Satan what's to use to paralyze God's church. And we can not let him win! God CAN and WILL equip us if we are ready willing and able-THAT is all you need!!! So whether or not God only has planned for us to raise the seven we have or adopt 20 more, I know I can say yes, knowing it is HIM who will give us what we need to be that vessel. It will NOT be easy! Our human flesh WILL become weak some days and our hearts will break. We may see more sadness than we ever imagined and we might doubt from time to time whether we did the right thing or not...but all of those things only prove we are still human. Olympic gold medalist can do amazing things to their bodies to win that medal...but do not think they do not have their moments of wanting to give up, of feeling weak, broken down weary or overwhelmed. But that does not make them any less an Olympic medalist, it just makes them human!

So go out friends and allow God to use you because it is not a matter of whether or not you are the one good enough to perfect His plan, because you are a child of God you already ARE part of that  plan and equipt with all you need to fulfill His plan! If you will allow yourself to be.

Friends the road up the mountain is not an easy climb, but I promise you DO NOT walk it alone, you will be given everything you need to climb and the view-oh the view is BREATH TAKING and so worth the climb.

Friday, February 5, 2016

Yet Another Hard Journey


Friends today we embarke on the journey yet again for brain surgery, we leave for Orlando today to start Nina's pre-op fun and then her surgery is Monday morning. We plan on having a little fun as a family in Orlando to help calm nerves.
I can not tell you how much like I feel like I am being dragged kicking and screaming even more this time than before! I simply want to go pull the covers over my head and pretend theses plans are a dream! But alas...I shall pull my big girl panties on, and arm myself with the Armor of God and be the mom God needs me to be for Nina!
I plan on keeping her regular updates to her page so if you want to follow here is the link --> Praying For Nina and hopefully giving more general updates here for any that do not have facebook.

Thank you for your prayers. comments and offers to help where ever it is needed. I have amazing family and friends and my church family is surrounding us as well!! (Part of the Armor of God)

Here is a list of things we would love lifted up!
Obviously pray surgery is done well and she pulls through great!
Pray she does NOT lose more than she has already lost and PLEASE keep what three words she has gained!
Pray only two surgeries are needed and that if three are needed that it she will bounce back quick!
Pray for her siblings who will be back here with Nana and Papa especially for Abbi as this will be her first night without both of us.
Pray for me, Like I said KICKING AND SCREAMING inside!
And most of all please pray her cough subsides this weekend, her cold is really not bad at all, but I am nervous they will say no-go, and I just want this part of her life to be over and done with!

That is all for now friends! Thank you for your prayers!!!!
I leave you with her sweet 3 words!!!

video

Thursday, January 14, 2016

It Should Not Be Me

Being an adoptive parents comes with so many feelings. We have been high and we have been very low. We have been happy and had heartbreaks, we have seen amazing victories and tasted the bitterness of regressions. There is no doubt that when you say yes to adoption, you really do not know what you are in for...no matter the child or the experience of the parent, the winds just blow and sometimes you never know which way your emotions are going to go.

Every time Abbi opens her eyes from a nap or in the morning, her first reaction is always every time without fail, to wipe her eyes, look around the room, as if to resure her that being out of the orphanage is not a dream, and then a huge smile comes across her face as her eyes catch mine, her arms stretch out to me and she giggles then wraps her little arms around my neck. (Then of course she jumps up and starts her day at about a million miles per hour!)

To see her light up and smile normally really brings me such joy! To know that she is genuinely happy with not only her home, but so very happy with her family! It is what all adoptive parents hope for!

But like I said, sometimes the winds of emotions can knock you back unexpectedly. I walked into our room to wake her, ready to see the smile on her face. I sat next to her on the bed watching her sleep, and all of the sudden a wave of reality rushed over me, a thought that I had thought before, but I guess maybe never really felt.

                                          I want her eyes to open and her face to light up, but her eyes should be looking at the mama who gave her life. The one who bravely carried her. Her arms should be wrapping around the woman who has her eyes and knows her little soul as well as she knows her own...it should not be me. Now do not get me wrong. I am beyond happy she does not spend another day in the orphanage! NO child should be there! But this is the reality for my babies that I can not change. A reality I can never give to them, and that breaks my heart to pieces!

**And as a side note, these are not feeling I linger on, or think about for long. I refuse to believe my kids are without the hope of growing up joyful and loving and confidant! My God is big and I have seen Him do great things in so many lives!

This is the fate of SO many children! SO MANY, EVERY WHERE!

This is Cassie. So many that have met and played with Cassie from American groups say how sweet she is! Sweet Cassie has woken up behind the bare cold walls of the orphanage for far too long! Cassie is now 11, the same age as my oldest. When I think back to the 11 years I was privileged to parent her I remember all the sweet moments this girl has missed having a mom.  She will not have any one there to sing Happy Birthday and help her celebrate a new year of life. Sweet Cassie does not know the smile from parents proud of her achievements big and small. Her hard work has been met with nodding heads and empty stares for far too long! My heart aches to watch this girl age another year without a family. The videos show her talking, walking and says she is very independent. She does share the same special need of cerebral palsy and looks like she too is rocking it! If adoption is something you have EVER thought about! Please please pray about it and do not hesitate to ask any questions! I would love to be of any help I can!
Please share this post and let's find Cassie a family!!!!!!!!!!!!!!!!!!!

PS-someone asked a question on my blog last week about a girl they are looking to adopt, the comment got deleted before I could read it, some how. :( Please feel free to reach out again!

Wednesday, December 2, 2015

Do Not Miss Out


Early early Monday morning in toddles Abbi, crashing into everything from her bedroom across the house to our room. Tired, I lift her into bed next to me and pray she falls back asleep. True to Abbi, she does NOT go right to sleep. She tosses and she turns, she sticks her fingers in my eyes and laughs when I crack my eyes to make sure shes not scheming as I groan inside. LORD I am so tired, please please let this child sleep through one whole night. Then the message from that Sunday came to mind.

                                 

            1 Thessalonians 5:18

18 In every thing give thanks: for this is the will of God in Christ Jesus concerning you.

In everything Lord? I am tired. Josh is tired. If it is not Nina waking us up, it is Abbi or the boys. Lord you called us to this life, you alone know we what we need to raise these children with love and grace, and SLEEP would be at the top of that list, no? Then I stopped...how can I be thankful for this, find it. I watch her sweet face from the dim light coming in from the windows, sucking her thumb trying desperately to breathe through her stuffy nose so she can keep her thumb in, and stirring every time she had to stop and take her thumb out to get a good breath. So that is what got her up in the early morning. She is coming down with a cold and likely doesn't feel good and can not keep a hold of the one constant that helped soothe her through the four years alone. Lord, how far this girl has come! She once would not even be able to stand being in a bed close to me, now she walks through the dark of the house to find comfort from her mama because she needs a mamas love. Someone to be there when life feel yucky, someone to be there at the end of the dark house to calm her fears. Someone to rub her head reassure her that she is safe, she is loved, and she is precious. I get to be that blessed one. Not because I am mountain top, super spiritual Mother Theresa.  Not because I must be super patient or I ambrave in ANY way shape or form.  And not even just because the Lord called only US to this life. He is asking us ALL to care for the orphans. ALL of us! We simply took the step forward, and now we get a front row seat to how the Lord gave everything He could to change our dark nights. Thank you Lord! I see it now! And oh the moment I would have missed if I had chosen to continue to groan inside that I was spending another sleepless night trying to soothe a child to sleep. 
These last two years of parenting children with special needs and adopting have been the most growing period of my life! I have grown in compassion, understanding, strength to stand up for my children, love and so many more ways than I ever thought possible. I have watched Isac go from a child who came to us with the attitude and heart of one who had no choices in life but to simply comply. He laughed, he smiled, he hugged, but much of it was only on the surface. To watching him now these last few months watching him truly love, and laugh and give all of his heart. I have gotten to stand by Nina and grow in love with a child who at first rejected me. Who was hurt so many times that she was very careful about who she wanted to let in. To stand by her bedside hospital stay after hospital stay and doctors appointment after doctors appointment, growing more in more in love and strength to help her fight. And I have gotten to be the one to calm the fears of a sweet child who lived through hell for 4 years and fought and is still fighting many of those fears. I have gotten to watch her love for hearing blossom and learn so many things she was denied for so long!
Christian this is what God has called us too! So many will look at this sweet 17 year old, 10 pound girl and say,  

"GOD WHERE ARE YOU?! WHY DOES THIS GIRL HAVE TO LIVE THIS WAY?! LORD, COME AND HEAL HER, COME AND TAKE HER PAIN PLEASE!!!!! HOW IS THIS FAIR?!?!?!"

Friends, it is not fair. She is no longer available for adoption...this potty seat, in this orphanage is her life now. The small ration of food, the battle lost to other children for food, for blankets, and for attention, will forever be her battle. THIS is her life. For her and many children. Unless we all step out. Listen when I say I KNOW HOW SCARY IT IS! I never never (sad to admit it) had much compassion for special needs. I never pictured myself taking care of special needs children willingly, let alone parent them willingly! It isn't easy. But MAN is it rewarding! It can be SO exhausting and overwhelming, but MAN these children give more than they take! And I know the cost is high to adopt...but where would we be if Jesus said... 

"Sorry God, the cost is much too high, I do not have time and it just does not fit into the plans I had for MY life"
Jesus knew this time on this earth was not HIS. He knew he was not here to live safely and comfortably.  He knew the cost would be a GREAT sacrifice, HIS very life! Friends, this life is not OUR own. We are not here to bring glory to ourselves and live comfortably. The time WE have should be and is HIS! I know adoption is not the only way to live like Christ. But I do know that if as many people on earth who claim to be Christians WOULD obey the call, THERE WOULD BE NO MORE ORPHANS! 

Josh's and my adoption journey is proof that when God calls you HE WILL find a way to make it work. And I have many many other friends who can say the same.  It is just another amazing chance to see Him at work up close and personal!


Look at the faces of these kids....


 Do you see potential surgeries?

Do you see needs your not sure you understand enough to parent?


Are you afraid of what their future may look like and how it may change the course of your family?

Do big sounding needs like cerebral palsy scare you? As I said above I was NOT ready for special needs. When you fill out that form telling the agency what needs you think you can handle I leaned hard towards needs that I thought would keep our lives in the same slow easy pulse of life. But God had other plans. And I am SO glad He did! Our kids, ALL of them, are SUCH blessings! And though it has not been easy, God has gotten us through it all!

Let's meet some cuties waiting for forever!


This little man and girlie have my heart! If we were ready to go back now I would be running to them! Sweet boy has a list of needs that I am pretty sure sound carrier than they are. And this girlie looks like LOVE!


This little guy is 6 (I think) and weighs 10 lbs. and still on a bottle...I have no doubt that he would be in SUCH better shape with the love of a family!
                        All four of these girls have either Spina Bifida or Cerebral Palsy. Each with a sweet twinkle in their eyes..                                     

This sweet girls story breaks my heart! As a young baby the parents were told she needed a surgery that ended up being the wrong surgery and too much was done. The surgery left her incontinent. The parents not having the means to care for her gave her up. She has since lived in humiliation of her special need. Children in orphanages are shamed for not being able to use the bathroom and are not allowed to attend school. A friend's mom sponsored her at a camp in China and said what a sweet sweet girl she is and how much she wants a family!
 Here is another sweet child who has waited too long. Many people who have met her have said what a sweet sweet girl she is! 




 This sweet girl is living in a world of silence like my Abbi. 


I have watched this boy grow older as he waits, Right after we said yes to Isac I saw his face and my heart melted. He file says cerebral Palsy as well but it says he is very on target as far as development!

 These two sweet boys are twins! One is said to possibly have Autism. Because of this China believes the other brother who has no special need will have a better chance at being adopted if they are separated. So heartbreaking knowing how little these kids ever grow up knowing anything about their past, and now it may be further ripped from them!

 This sweet girl had a family go all the way to China and decide she was not meant to be theirs. For one reason or another she was left behind, again. Because of this China is deciding that unless a family comes forward for her they will with draw her paperwork so she can never have the chance to be adopted. She will be termed un-Adoptable. 

Friends, WE have the chance to change the world! WE have the chance to live out what God has called us to do, LOVE. Some needs are bigger some are very very minor, some do not have a need at all (Isac does not have a special need at all!) But one need they all have is a family! Most of us have room in our hearts and our homes if we are willing to give a few things up. I do not pretend that living for God is easy, comes with out struggle and is not scary, but I can promise you it is well worth the journey and WELL worth the blessing to love on these sweet children of God!

For anyone interested even a little bit please do not hesitate to ask questions! 

I leave you with this song that speaks the words of my heart...and I truly believe our Lords.


We don’t feel ready, we don’t feel steady
Question what we really have to give
Stay where it’s safer, claim faith but waiver
Is this how we’re really meant to live
We pray but never move
We say but never do
Chorus
It’s time to get our hands dirty
oh oh, oh oh
Be love – there’s a whole lot of hurting
oh oh, oh oh
Calling all hearts, Calling all hands
Calling all feet to take a stand
Why sit around and wait for a miracle to come
When we can be one, When we can be one , When we can be one
A little somethin’ might feel like nothin’
But in His hands it’s all we’ll ever need
To speak life to the broken
Watch the blind eyes open
It’s who He’s calling you and me to be
We can be the change – be the hope
We can be the arms that don’t let go
We can be a light in the dark
We are we are where it starts
Chorus
We can be the light in the dark
We can be the arms that don’t let go




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 home...so 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 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!!!!
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


LOVE <3