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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. 




Thursday, October 23, 2014

He Smiles in the Storm.

He Smiles in the Storm. 







When our beautiful, amazing, medically complicated son with an unknown syndrome was born, he was immediately hurled into a storm. We knew he was sick, were told he would die and when he literally started "dying inside of my womb" he was thrusted out via C-section, taken to the cold, metal exam table in a specialty hospital miles away from our home. Dozens of NICU nurses, doctors and staff crowed around him to "assess" his physical status and told his father we couldn't see him until they "knew what exactly they were dealing with". They allowed me to kiss his face while I was still strapped down to the surgery table and whisked him away. 
Once they had him all "suited up" in his isolate for transport via helicopter to Children's, they wheeled him into my room, my husband and I got to touch his little plastic box and say goodbye.....
He was born into a storm. He new nothing but the four walls of his hospital room, 30 minutes per day of parental holding, needles, tests and pokes for almost
6 weeks. After he was discharged the storm turned to a light rain for awhile while he was tested, poked, prodded, weighed, force fed and drug back and forth to Children's. 
Through the (almost) 4 short years of his life, it never stopped storming and he never stopped smiling. He smiled through 10 surgeries, 7 other anesthetic procedures, endless genetic testing, endless IVs, tests, hospital stays and on and on. His peace is super natural.
A peace that could only come from God and passes a tremendous amount of our "own understanding". He glows, really because he was chosen to be a light in the dark, a smile in a storm. He is a gift of true grace.❤️







Thursday, August 28, 2014

Two Cups of Coffee and Three cups of Grace.

"I don't know how you do it!"
If I got a nickle for every time I heard that, I could buy.....well, a lot of coffee....
I don't know what "it" is but I can assure you, I don't do it as well as one may think. Some days, I snap. Some days I cry. Most days I can't even function until I've had two cups of coffee. Honestly, with all that could or might go wrong, feel impossible or "not work" in this insane, beautiful, crazy life.....I barely get through the day without a whole bunch of coffee and even more grace. "By His grace we are healed". I take that figuratively. Yes, I believe in total healing of the body but I don't believe we get everything we ask for. I don't know why, but God chose our son to have Special Needs. He chose this family of six to live, to learn, to fail and relearn but most of all He chose to give us grace and grace unending......For every time I fail, for every time I snap at the kids, get grumpy at my husband and annoyed with the "system" I can go back and fill my cup with Grace. I will fail, and fail again. I don't have superpowers and even though I LOVED when my fifth grader looked up at me the other morning and said, "You really ARE super mom!" shortly after I ran back to the house in my pajamas to get her forgotten lunch box just in time for the bus, I'm not super mom. Truth is, being a mom is enough. I pray I never stop loving without condition like He loves us. That every time I fall, I'll never forget to reach my hand out and let Him help me up. 
We all DO what we can to keep our heads above water and if that means drinking a supersized Monster on my way home from Children's Hospital appointment number one milion, than that's what I'll do. With all of my heart, I believe that we are all fighting our own uphill battles and that we need to cut ourselves some slack or in my case pour myself my second (or third) cup of coffee. Don't get me wrong, I am flattered by your compliments and encourage you to keep 'em coming but I want you to know that I am "normal" just like you....:) One thing I know for sure, is God has blessed me beyond measure with tremendous friends and family to hold my hand (and pour me wine) along the way. I love them more than they know! Even though some days seem impossible and I go to bed wondering if my sweet, tiny son will ever know a life with out pain and hospital stay..... morning always comes with new strength, new grace and fresh coffee.
 

Friday, August 8, 2014

....She Laughs Without Fear of the Future.

"She is clothed in strength and dignity and laughs without fear of the future."
Proverbs 31:25

It's a thing. Laughing, enjoying life without fear, anxiety, worry about the future... I can honestly say, one of the hardest things I've had to do on this crazy journey is slowly teach myself to enjoy life free of fear and it's evil twin anxiety. To rely on God's peace, presence and perfection. I AM clothed in dignity and strength. I CAN laugh without fear of the future, fear of the mail, fear the ever heavy financial burden, fear of ever changing insurance policies, denials and limits.......I can laugh because God's got this. Because His ways are far better than my own.....I can't micro manage this. I don't have a magic wand.....I can't change Social Security's policies, government run health care or the fact that my baby still vomits every day....I've tried and I've failed.....What can I change? What can you change in whatever situation you're in? We can change our hearts. We can trust. Trust that everything is going to work together for good. A good that looks different from anything we could ever imagine....... This beautiful boy. His beautiful life. His tiny, scarred and worn 3 year old body is changing hearts and minds. He is teaching me how to "laugh without fear of the future....."  The hard days aren't over. The questions aren't answered. The mail isn't going to stop bringing bad news.  Insurance will disappoint. I'll continue to hand my tiny boy over for endless procedures and surgeries that I never knew existed....I'll still spend nights on hospital "beds" holding the boy that doesn't belong to me, praying that he will one day know a pain free life. There are no magic genies or wands. Just wills. We have the will to change our hearts. To LAUGH without fear of the future......
 

Saturday, July 26, 2014

"Don't like booboos, no....."


 







"Don't like booboos, no. Don't like no hair. Don't like hospital, no."-Case 3 1/2 and acutely aware of his differences, tired of booboos, tired of hospitals, tired of surgeries, hated having his head shaved for the Cranial Vault Repair......just done and finally able to vocalize it. Two of the hardest things about being the mom of a medically complicated child is hearing how medically complicated your child will be/is and watching your child realize it... For the last few months, he's been noticing he's smaller than normal, he's fed up with constant vomiting and he wants to do all the typical things a three year old can do. He can't tumble due to brain malformations, he can't ride the fun rides at the park due to his abnormally small stature, he can't play contact sports when he grows....and the list goes on. Things he doesn't know he'll never be able to do yet but we'll need to tell him some day. This. Is. Hard. But not impossible....He will understand, eventually that great rewards come with his great strength. He is wise beyond his years. For all the can'ts....there are a thousand cans. He CAN walk. He CAN speak. He CAN grow, develop and thrive mentally, emotionally and intellectually. He can love and feel love. He CAN breath, LIVE and live abundantly. He CAN change the world. Change how people view disabilities......It will take time for him to see that. The hard times will be hard but the blessings will flow....like they always have. God bless this baby. Help him to see You and Your AMAZING WILL. We are loved and we are blessed. Thank you for sharing this beautiful journey with us. ❤️





Thursday, July 17, 2014

Amazing Case.

Amazing Case. 

Long time, no blog....Sorry. Things have been busy, I guess.;) More "normal" than ever.....Case has had a few weeks off from...everything....No therapies....No school....No appointments...Just fun and summer until next week. 
He's transitioned from being fed 21 hours a day via feeding pump to, 8 separate, 10 minute feeds through a tube and syringe a day and 8 hour pump feeds at night. HE LOVES BEING FREE, free for his back Panek, free to tumble...free. He's so, amazing....The biggest struggle he's having is daily vomiting. The same vomiting that's been going on for years....I pray for grace....I pray that soon, really soon this will be corrected. 
Today, Amazing Case went into a bouncy house for the first time. I was so nervous. Nervous to let my 3 1/2 half year old go in a huge house for bouncing...Not because I'm over protective or a worry wort but because he is fragil. He, not too long ago had his head cut open, movement makes him sick and he has brain conditions that could be hurt by lots of jumping, etc. he barley jumped....but boy did he SMILE! There is nothing a mom of a special needs child loves more than watching him do "typical" things. He. Is. Amazing. 
So, as we prepare Amazing Case for his 10th surgery (August) and 4th MRI (September), I remember that everyday is a gift and sometimes, we need to let go.....
Thanks for loving Case. Thanks for being loyal. We ❤️ You all. 



 
If anyone would like to purchase a Case t-shirt, here is the link.:)