Frequently asked questions.

Saturday, March 14, 2015

The F word.

 
Let's talk about one of my least favorite F words in the world.....FAIR. I mean really, fair doesn't exist....One of my least favorite parenting moments is when one of my kids come running to me and in the whiniest voice declares, "BUT IT'S NOT FAIR!"  My immediate response is, "You are correct and life will never be FAIR."
I have to admit though, sometimes I wallow in self pity over the looming need for life, things, circumstances to be fair. It's an unachievable goal, a thorn in the sides of most special needs moms. 
It's not fair! It's not fair that our child spends a Saturday afternoon being shot with growth hormones while his friends are at birthday parties and playgrounds. It's not fair that we envy the mom who's biggest worry is an ear infection and how many GMOs are in their daughter's lunch while ours are, "How can insurance deny a hospital stay that happened 10 days ago?! Will his intestines ever work? Will this outpatient appointment turn into an extended hospital stay? Will his next surgery succeed or fail? Will my 'typical' children have emotional baggage from all of this?...." I could go on. There are a million things to worry about, think about, stress about....trust me....I know. 
Truth is....life will never be fair, not for any of us. I will never have the fourth child I dreamed of (before diagnosis) I will never look at tricycles, zip-up pajamas or water parks the same way again. My child may never use those things the way others do but.....here's the positive in this otherwise depressing post:
"Every little thing is (always) going to be alright".....
There are rainbows after the storm. There are tak-n-bake pizzas on my porch because my friends know how "unfair" life can be. There will always be that friend who listens to me cry about the nasty service rep I waited 45 minutes to talk to or the ride that my four year old was too short for even though two year olds were on it..... She listens becauses she knows that my hurt go way beyond service reps and amusment parks. Sometimes, I still need to grieve the loss of the life I imagined. The rumor that we were given this amazing child because we are strong enough to raise him is false. God loaned us Case because we are blessed enough to see the beauty in an unfair life. God's grace is greater than my faults, my fears, my anxieties. I'll  never have a perfect day. Most days, I'll  regret words I said md wish I could fix everything but.... there will always be grace. There will always be that subtle reminder to "be still and KNOW that HE is GOD."
Together, our broken pieces make a whole comunity. We need each other and we need to petition to get the word "fair" taken out of the English language.�� Just kidding.... 
At the end of an unfair, exhausting, problem filled day, there is always grace abundant and a friend willing to bring pizza. We are lived and we are blessed.  Thank you for loving our #VerySpecialCase and following this crazy journey. 




Thursday, January 1, 2015

A Beautiful Year. A Beautiful You.

2014 was a beautiful year. The good, the bad, the hard....It started with surgery #7 and ended with surgery #10. 
Case started school in January unable to draw a straight line and ended writing his NAME!



Case's biggest surgery of his life happened in May. His scull was taken out of his head and reconstructed....Not only did he rock it, but he excelled! His Chairi Malformation disappeared! He gained 7 pounds, spoke much more and ate more than ever once his brain starting growing properly!


Beautiful Case. He's worked so hard, grew so much and met some amazing people. 

 

Beautiful news casters..... 







Amazing men that changed our lives. 

This year held so many hospital trips, blood draws,appointments and tests. 




He rocked them all!

2014 was the year of the Taco! We finally made the plunge and adopted a dog from a local shelter in November. We named him Taco. He completed our little family. 




We've been so very blessed in 2014. It was hard. It was beautiful. It was one amazing year. Case was chosen to be a "Wish Kid."  We are in the process of his wish to go to Disney World being granted for April!



Throughout the hard....A surgery failed, a brain reconstructed, a dangerous Hypoglycimicic drop, several hospital stays, etc. etc. there were blessing unimaginable! Our community rallied together, our friends and family never left our sides. They put us back on our feet. They are our heroes. 






From news coverage to a billboard and parade, famous Case became more famous and our community never ceased to amaze us!









Because of our beautiful facebook community, our Johnstown community and all of our amazing friends and families these two little boys were able to collect 700+ Christmas ornaments for Children's Hospital and the Ronald McDonald house. 

Through the good times and bad, 2014 was a beautiful year with a beautiful Case! Thanks for being part of it!









Here's to one kick-butt 2015! Who knows, maybe we'll find Case's main diagnosis!
Either way, one thing is for sure, through the grace of God and the love of others, Beautiful Case is going to have yet another Beautiful year!!!









Sunday, December 21, 2014

Waking Up Four!

Dear Case Daniel McNulty,

Today you woke up FOUR! Wow! That's 4 more years than you were promised. Four more years than we were told to expect! Four years full of kisses and chaos!
Baby, you have come so far! You have proven so many wrong. You fought for every year! I am SO proud of you! I've watched every tear fall from your eyes and held your tiny hand through every needle, every test, every sonogram, every hospital stay.
 Daddy and I can't imagine life without your contagious smile and your energetic hugs. Your life will be different than the other preschoolers. It's full of tubes and pumps, medicine and Dr visits but we know four is full of promises. The promise of strength for the journey. Grace in abundance and the promise from Jesus that he will never leave you or forsake you. 
Nobody ever promised it would be easy but I promise you, it's worth it!!!

Love, mom. 

Birth 
First birthday 
Second birthday 
Third birthday 
FOURTH birthday!




Monday, December 8, 2014

Dear Case, Keep Beating the Odds!



Dear Case, 

Four years ago today, they told us to prepare your burial. They told us the worst. You were still inside. I could feel you. I knew you weren't well, weren't growing, couldn't survive a natural birth..... and I loved you. I loved you with every fiber of my being. I knew you belonged to God and I begged him to let you live. To give daddy and me the chance to raise you, watch you grow. I couldn't think of the future because I couldn't bear a future with out you. I wanted to see your first steps, hear your first words, let you pick out a dog that needed loving. You are a gift that keeps on giving. You may grow different, eat different, hit milestones different and live behind hospital walls sometimes, but you are perfect just the way you are. We thank God everyday that he loaned you to us, every perfect-imperfect part of you. Today, as emotions tug at my heart and visions of that horrifying day four years ago flash through my head, I thank God for his unending grace and the gift of our Very Special Case. 

Always and forever love, 
Mom 




Sunday, November 2, 2014

Our Cranio Journey.

Our Crainio Journey. 


Steep a cup of tea and get comfortable because this is gonna be a long one!
I've never really documented Case's journey from diagnosis of Sagittal Craniosynostosis  to the Crainio Vault Remodeling. In part, the struggles of the journey were still fresh in my mind and I wanted to wait awhile for the results of a full scull repair to be apparent. 
Let's start in May of 2013. For a while, Case's Geneticist thought he had a suture (every baby is born with small gaps in their scull that close as they grow older) or two that had prematurely fused causing his brain to be crowded and his head to grow wrong. She requested a CT scan and for us to be seen after the scan by the Crainio-Facial clinic at Children's. He was already a patient at the clinic due to his sub-mucus cleft pallet and other Cranio-facial anomalies. The CT scan showed that the top suture on his head was indeed closed meaning Case had Saggital Crainiosynostis. The first Dr we saw does not do Crainio Vault Repairs but her face was strewn with concern. His head was misshapen and his brain was growing wrong.....that sent us into an immediate whirlwind of VEPs ( a visual test used to detect inner cranial pressure and other symptoms of Craniosynostosis), eye exams to check for swollen optic nerves, etc. 
Case was then scheduled to see who we will call Dr. X in July of that year. Dr. X said he needed a Cranio Vault Repair within the next few months. His concerns were that there wasn't enough fluid around his brain, the frequent headaches, etc. 
So, there we were, planing for a major scull surgery around October! This was going to increase my son's quality of life. It was one answer to the many questions his very complicated life holds. I called the blood bank to prepare to donate blood for after the intense repair that would cause a loss of a lot of blood. I called the scheduler, made babysitting plans for his three sisters, planed mentally and physically for what would be the most invasive surgery of his life.....I was ready! In about August or so I got a call. I thought I'd be getting the final date of the repair, instead I was told Dr. X was leaving the facility and we needed to make an appointment with Dr. Y.
"Okay." I told myself....."It's okay. I'm sure Dr Y feels the same way and we'll move forward as planed. 
So, we went back to the same hospital and saw Dr Y. I was wrong. Dr. Y did not agree Case needed the repair unless he showed solid signs of increased cranial pressure. Headaches, vomiting, irritability could all be side effects of other things Case had going on. After all, we have an "incredibly complicated son". 
I was trying to process all of this. We went from having a huge surgery in the fall to possibly never having the craino vault repair....wow. 
I was obviously befuddled. Dr. Y handled me courteously. I told him I wanted Case's Neuorsurgeon consulted. Case has a great Neurosurgeon that knows Case, his complications and needs. Dr Y agreed and called me a few days later. 
The decision was the same. Case is complicated. "There's no hard evidence he needs the surgery", he said. "Case is too complicated. We have to be sure the surgery is necessary..... No pressures are showing up on the VEP, his optic nerves look good. We will just continue following him and if pressures come up, we'll talk surgery then." The Neurosuren also said Case is complicated and we can't be sure the headaches, etc. we're from the Crainiosynosis so, he too wanted to wait and that's when I felt like my heart fell out of my chest. I was out of controll. All I could do was trust God and the Drs and go on with life.....That. Was. So. Hard. 
In the back of my mind I knew if Dr X just would have stayed a little longer.....this would all be better and we'd be "on the other side" of the repair. But, I knew Dr. Y was/is a very good Dr and that him and the Neurosurgeon were doing what they believed was in Case's best interest....
Okay, let's skip to the spring of 2014. After meeting with an amazing Neurologist and a slightly "off" VEP it was decided that Case would have an Invasive, Innercrainial pressure monitor placed in his head to see what pressure was really there.... The end of April, he was admitted to the PICU at Children's. They sedated him, drilled a hole in his scull and placed a pressure monitor on a sunny Tuesday morning. We stayed there and pressures were monitored. At this point, he was having around 12 headaches a week, still vomiting at night, was way behind in speach and growth. His pressure spiked some during the invasive testing but not as much as we expected and only before a headache....Wednesday, they still weren't sure he had enough pressure to operate. "If he weren't so complicated, they go ahead and do the repair" but they were taking every precaution necessary to make sure Case was not submitted to unnecessary pain, etc for not enough reason.....That's when Dr. Z comes in....Dr Z is another plastic surgeon that saw a need for the surgery and thought we should go ahead. He consulted Case's Nurosurgeon and they agreed they would go ahead and do a full Crainio Vault Remolding Friday! Holy. Freaking. Cow......it was going to happen and I was ready. I prayed we were right. I prayed the posible "reasons he'd never leave the operating table" wouldn't happen. I prayed he wouldn't bleed too much, get an infection, etc. 
Surgery was set for that Friday and the is what they would do:
But a zig-zag incision from ear to ear. Pull his skin and fatty tissue back then take out his scull in sections. They'd then cut it "like a blooming onion" and put it back using surgical paist, chips of his own bone and dissolvable plates and screws to secure the repair. 
I handed him over and can say, I wasn't scared. I knew this needed done and I felt peace. I'll tell you when I cried.....when I saw him all bandages up in his PICU bed after surgery. It. Was. Done. We wre on the other side and it felt good! A weight was lifted off my shoulders. No more wondering, no more pleading, no more pushing... now....just to sit back and hope it was the right choice.

Fast forward to now. We celebrate his 6 month crainio anniversary today,  November 2. I have no regrets. He's gained 7 pounds (because he can swallow better and is eating more by mouth), his speach and over-all development has DRASTICALLY increased. His headaches are GONE! The pressure was so severe, it caused his brain to decend below his scull (Chairi Malformation 9mm). Well, that's GONE! The only thing that still exists still is night vomits. We still don't know why they happen but, I know, some day, with the help of Case's AMAZING medical team and God's grace we'll know why they happen and he will get relief. 
In a nut shell, our crainio journey was hard. Confusing. Exhausting. More so, than the NICU and maybe even the Genitic journey....but it's over and we are blessed.❤️
A few days before the Crainio Vault repair. 





6 months post-op. 









Saturday, October 25, 2014

A Very Special Wish.

When I first found out I was pregnant with my fourth child, I was elated! I miscarried our third child. A few years later we had Lainey and we really wanted one more. So many thoughts ran through my mind....."What if the baby is our only BOY?! What if we have a fourth, precious girl? What if I miscary again?....That would be so hard.....I wonder how big he/she will be, who they will look like and what their future holds...." Never once did I think, "I wonder if my child will be chronically ill and qualify for Make a Wish". There were a lot of things that never crossed my mind concerning my unborn child. Atleast not untill my 25 week sonogram with a high risk doctor. 
Spnething thing I did realize while on this journey is you can't imagine the grief you'll experience at times. Equally, you can't imagine the joy that comes along the ride.....
Our precious, complicated, strong boy, Case was picked to Make a Wish. Through all of the hards, the bads, the booboos, through all of the tears and the pains there's always a light at the end of the tunnel. This wish is our light.❤️
After being referred, chosen and checked out....Two fantastic Make a Wish volounteers came to our  home and asked him what he wishes for. He said in his own Case way that he wants to meet Mickey, Buzz, Sully and Mike and "Mickey Mouse's House."
What a blessing, not that Case categorizes as having a chronic illness but that our family can have a FANTASTIC week away from all the "normal". A week to do nothing but enjoy each other and thank God for our miracle.