A Very Special Case.

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....

"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 "C...

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 slee...

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 immed...

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...

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...

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...

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 t...

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! I...