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 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!