Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Monday, September 24, 2012

Riding the Gain-Train!

It seems for the first time in oh, 13 or 14 months, Case has gained over a pound in 4 weeks! Yippie! It's about time! The GI doctor was very impressed. He has us staying at 42 milliliters an hour for 22 hours. Each milliliter is one calorie equaling 924 calories in 24 hours. I don't know if that's the magic number or if he's finally over a hump but here's to hoping he keeps it up!! He will obviously keep an eye on his height too. We don't want him ":wider than he is tall.;)". Also at the GI's on Friday he said he thinks he has an infection in his GI tract. He sent a sample of his poop to the lab and I should get results tomorrow. That would explain the weird poop 4-7 times a day and the random fevers. If it is an infection, it should be taken care of with an antibiotic. Also, we are venting 22 hours again but now can we can pitch the bile. Yay for that! The doctor had a sample of blood drawn so he can have a "baseline for electrolytes etc.". If Case seems dizzy or starts acting funny we will have his blood checked again and if throwing the bile away is harming him we will put Pedialyte into his belly. Good deal. So now the big boy is 16 pounds!! He is speaking more and uses a few signs.:) He is stubborn and adorable, just like his father.;)

What a typical Genetics appointment looks like.:)

Big boy sucking on a grape.

Using the stool from his Physical Therapist to do naughty things.;)

Saturday, September 22, 2012

"You make beautiful things".

"You make beautiful things. You make beautiful things out of dust. You make beautiful things. You make beautiful things out of us. You make me new. You are making me new."
Case is a beautiful thing. Through him we are becoming "new". A new mom and dad doing things and going places we never thought we would. During the nightmare that was my pregnancy with Case one of the million OBs I'd see used to say his "computer programming is messed up. When your baby's computer program was put together it was put together wrong." Yesterday at the Genetics appointment they talked of how baffled they are by Case. "We've just never had a case quite like his. We know there is a reason behind all of his differences/issues we just don't know what.  We are at a point where we've tested most everything we think it could be." We spent hours with the Geneticist, Genetic councilor and a student studying Genetics (they brought her in because "Case is so interesting and she could learn from him"). We went through every problem he's ever had and discussed every test already done. Are plan is to go back in November and sign a bunch of consent papers then start the Whole Exome Sequencing test. This test is new to the hospital and we are only family number 7 to take part in it besides research studies. As long and all the pieces fall into place (insurance approving it etc.) Dan, Case and I will give them a vile of our blood. They will send it out to a lab that will look at is extensively. It will take about 6 months to get results and they made us very clear that the results could be hard to swallow or could be everything but "the syndrome". The events of yesterday got me to thinking that Case is a "beautiful thing". I've come to realize that if people would stop being so busy praying for a miracle for Case, they'd be able to stop and see the he IS the miracle. "He makes beautiful things..." and thank God we are blessed enough to have this "beautiful thing" as our son.


By the way, he rocked both appointments and blood work at CHP yesterday.:)

Thursday, September 20, 2012

Natives vs. Foreigners.

Tomorrow we go to Case's first home, the Children's Hospital in Pittsburgh. Case spent his first 38 days of life there. We've spent countless hours and sleepless nights there. It has saved and bettered the little guy's life. As I've sat in the waiting room, sometimes between hours of appointments, I watch the people. It seems obvious who the natives and who the foreigners are. The natives often come with their children in wheelchairs or adaptive strollers. They come with toys, snacks and drinks. They have multiple sheets for multiples appointments and look tired. This is their life. Day in and day out their sick and or special needs child comes first. They've talked to countless doctors and sometimes hear things they've never imagined. And then you have the foreigners. The parent's of kids who have to come once or twice. I have nothing against the foreigners, I just can usually tell who they are. They come and look like they got a full night's sleep.Sometimes, they are more stressed then the natives. They are the ones that complain loudly about the long line at registration or about their naughty toddler. They don't "get" it because they don't have to. They haven't "been there". They weren't told their child would die or that the doctors "just don't know where to go from here" and hopefully, they'll never have to. Of course, if they did their idea of a bad day would no longer be a long wait in line or a naughty toddler. To them Children's is an inconvenience. To us, Children's is a life savor. Being there puts things into perspective, it helps you see how strong you are and how strong you hope you never have to be... Tomorrow he will have a GI appointment, Genetics and probably blood work. During the Genetic's appointment we will begin discussing a new, somewhat freighting genetic's test. A test that could give us an answer to the 21+ month questions, "What's causing all of Case's problems? What's his main diagnosis?" and/or this test could give us grief and heartache. Either way, if it's part of our journey, we'll know and make the right decision. It's all a part of this very special life.

"Sometimes the ones who have the brightest smiles have known and endured darkness. Knowing this gives me no reason why I can't survive my days with gloomy skies." — Dodinsky




Sunday, September 16, 2012

Sappy Sunday.

So, as you all know I love this very special Case of mine. It's obvious that from the tip of his tiny little webbed toes to the top of his (slightly large for his body) head he is FULL of special. For all 20 months of his far from normal life he has touched, blessed and loved more people than I could ever count. As he walked around the restaurant we ate dinner at last night, it was almost as if he sprinkled joy all around him. Every one he came in contact with smiled at him. He was awed over and adored. Yeah, he's cute. I'll be the first to tell you that but it's more than his adorable little body that has people go out of their way to meet this tiny star. It's his pure soul and his ability to love without discrimination. I didn't realize how easily I judged people by their appearances until my tiny teacher came along. Just the other day this crazy looking dirty man with a lazy eye came over to the fence around the play ground Case and I were playing at. I immediately looked away and tried to get Case's attention so we could both ignore this abnormal looking man. That didn't work. Case was drawn to him. I followed Case over to the fence where he talked, smiled and waved at his new friend. The man was full of joy standing there in need of a bath. Case didn't care what he looked like or that his hair desperately needed brushed. The man was harmless and just needed a smile. That's what Case does best; spreads smiles!:) He takes all that he was given, pulls the abilities out of the disabilities. He is the  special from special needs and needs nothing more than what he was given. There you go, some sappy to add to your Sunday.;)

*Disclaimer: I always watch my kids very carefully and would never let anyone put any of my children into a large, windowless white van. No worries.;)

“The question for each man to settle is not what he would do if he had means, time, influence, and educational advantages, but what he will do with the things he has.”--Hamilton Wright Mabie




Saturday, September 15, 2012

Flash Back!


Today is Neonatal Nurses day. As I'm thinking of how to thank one of my favorites that I'm still in touch with my mind zooms back to December 23rd, 2010. This was the day I was discharged from Magee (where I delivered Case via c-section) and moved into my new home, the Ronald McDonald House in Pittsburgh. Dan walked me through the bright colored wall of CHP and back to my tiny man's new home. There he lay, in his box under the billy lights with a visor on his face. His tiny 2 pound 13 ounce body had holes and bruises from what seemed like constant poking and pricking. I could not hold him. His food was TPN via an IV. I was completely exhausted from, you know being cut open just days before. I didn't use a wheel chair or fill my prescription of Percocet. Once in the room I realized this was going to be a long, hard road with lots of tears and triumphs. My baby belonged to the NICU. They decided when he was held, fed and poked. That first day I was mostly alone while Dan got Christmas and the kids from our home and moved it and them into the Ronald McDonald House. As the evening rolled in I was dizzy from emotional and physical exhaustion. It was then I met one of my very favorite NICU nurses, Kristy. It was 7pm. The day nurse was giving her report and it wasn't pretty, full of all the things "wrong" with my precious baby. As I listened, my face got hot and I had no control over the the tears that filled my eyes. I tried to escape but the closest bathroom seemed miles away. There she was, my NICU angel, Kristy telling me it's okay to cry. I bawled. It was an uncontrollable, ugly cry right in front of her. I was in over my head with no way out. As the days went on, I got stronger, smarter and eventually felt like Case belonged to me not the NICU. Every step of the way there was a constant comfort in nursing scrubs. You see, the doctors came and went but it was the NICU nurses that were there for the good, the bad and the ugly. They weren't just nurses. They were nurses, doctors, therapists, baby holders, baby feeders, artists, comforters, bathers and most importantly, friends. Friends that I will NEVER forget! Here's to the heroes of the NICU in nursing scrubs! You will always have a place in my heart and I will be drinking a glass of wine I your honor.;) You mean more than you'll ever know...

Thursday, September 13, 2012

Therapy, growth and random fevers.

Case had a great week of therapy! Yesterday was speech. He said a new word and did two new signs! It was also nice to just watch him play and learn (as it always is). Today we did back to back therapies at a play ground. First Physical then Occupational. Case climbed, talked, ran, slid, picked flowers, blew kisses, "caught" kisses, threw garbage away, blew threw a straw, drank two sips of juice and licked and sucked on cookies. That's what we call good therapies! He is learning every day! He's still not growing much physically, but mentally is growing leaps and bounds! This past week he had some random fevers. One went as high as 102.7 (a little high for comfort). Because Case only has one kidney it's important we catch a kidney infection right away. His pediatrician wanted to see him so, I took him last Thursday. It looked like it could be a kidney infection or a virus. I was given the choice of going to the local hospital right away to have them draw blood, cath him and x-ray him or I could take him home and only take him if it got worse. I chose to take him home and watch. It's always nerve wracking making decisions like that. Thankfully, I made the right one! He still was feverish off and on but he didn't get worse and was completely better by Friday evening.
So, that's a quick update on mini man! Oh, and he's been a bit of a local celebrity since he was on the news.:) People recognize him when we are out sometimes. He is so special!




Oh and he got this AWESOME, new, hand made backpack from, TuFeBoutique!
    


Gotta love therapy in the park!

Saturday, September 8, 2012

Choose this day whom you serve...

As a mom of a medically complex, special needs miracle the timeless words "Choose this day whom you will serve" have embodied a new, young meaning to me. When I wake in the morning and the thoughts, phone calls, beeping and retching and chaos start I have a very important choice. I can choose to serve, listen and be enslaved to the never ending demands of my life or I can choose a peace that passes my shallow understanding. I have the power to not give into the never ceasing tug of worry and stress. I don't have to be enalaved by the chaos that is the life of a special needs mom with 3 other busy kids. Life is life, it will always be. No one said life is easy, comfortable or painless but we all have a choice. Today I choose to serve Him. Him who loved me enough to make me a special mom. Him who has not allowed me to be comfortable for very long, instead has stretched me to new lengths. And again in ten minutes when my mind starts to race, the pump starts to beep, my three year old has destroyed something and I'm on my way to the bus stop for the other two kids I'll have the chance to choose again...




Tuesday, September 4, 2012

"Everybody needs a little help sometimes".

My daughter was watching "Doc McStuffins" (a stupid preschooler show) and I over heard, "I guess I always thought I was the one to help everyone else. Not someone that would need help. Everybody needs a little help sometimes." This was said by a broken Superhero toy that  "Doc McStuffins" was fixing. I heard this the day after Case's big benefit ride and boy did it apply to me! Sometimes, we need help! Sometimes, my floors need scrubbed or I don't feel like cooking dinner. Sometimes I feel so emotionally drained that my body aches and sometimes, we feel finically drained from Case's expenses. That's where the angles dressed up as Burgi Low Lifers stepped in. The ride was a huge success! Hundreds of people came, rode and partied in honor of and to support two amazing children that have and will endure more pain and sickness then any little kid should. We had some family, and some friends that have become family come out to support the wee boy. We also made lots of new friends. Dozens and dozens of friendly smiling people came up to us to meet our mini hero. They wanted pictures with him and of him on their motor cycles. He walked through the big crowds with his head held high and people moved out of his way like he was king of the cyclists!:) This whole experience was surreal. From the phone call saying he was picked to the big event. We felt a love and concern from people we never new before. Also, I got quite a few new Facebook friends;). I had several people look lovingly with concern in their eyes at me and say they wish for the best or they hope things get better. It was wonderful to see how much they care. Someone asked me how much the Low Life Riders get paid for this. The reality is they get no monetary payment. They "do this for the kids" and obviously love it! They work their butts off for little kids they never met and for that I am forever grateful. We don't know yet how much money was raised. Any amount would be helpful in caring for this special boy. The truth is, we acquired more then money can buy. We made new friends. Had our old ones standing by us, loving and supporting us. We shared a special story and our hearts grew with hope. Thank heavens for our very special Case.:) To read my friend Lisa's thoughts on the big event (yeah, she and her family are cool and drove like 4 hours round trip to support us:) click here.

Awesome video of our sweet boy.:)








Saturday, September 1, 2012

A VERY Special Gift!

Tomorrow is the big day! The charity ride benefitting Case McNulty (YAY) and Tiffanie Even's is TOMORROW! I am SO excited. I have met and grown to love an INCREDIBLE group of people. Through out the year the Burgi's low Life Riders work tirelessly to put together and raise money for a 100 mile motorcycle ride ending in a great big PARTY. They say (and I quote) :it's for the kids." Kids they never met. Kids they know have many needs, health wise and finically. Kids that get pocked, cut open, stay in hospitals and are sick. They really "do it for the kids" and it shows. Some of the kindest, most generous people I've ever met ride motorcycles and we are blessed beyond words to know them! THANK YOU LOW LIFE RIDERS and all who volunteered, donated and ride for this very special cause!



For the non-locals:
If you would like to donate to a good cause, visit their website by clicking here or their facebook page.

For the locals:
There is still time! If you want to attend the ride and or the after party, you can register at Blair Candy between 8:30-11 am tomorrow morning.

  • Sunday, Sept 2
    Benefiting Case McNulty and Tiffanie Evans
    Registration starts at 8:30 at Blair Candy Company, 3421 Beale Ave, Altoona (Former Imler's Bldg)
    Opening Ceremonies begin at 10:10 am
    Kickstands up at 11 am sharp!
    Escorted 100 mile ride thru Central PA
    Ride concludes at Glenn's Place, Claysburg, with a dinner from Holland Brothers and live bands.
    Registration is $20 per rider, which includes a t-shirt.

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