A Very Special Case.

"I am trying to understand How to walk this weary land Make straight the paths that crookedly lie Oh Lord, before these feet of mine Oh Lord, before these feet of mine" I've been traveling a crooked path and all I see I one step ahead. This land can be weary but blessed. I am overwhelmed with the amount of blessings Case and his story bring, spiritually and monetarily. As I was speaking to his Genetic Councilor today (yeah, we chat on the phone, lol) I started thinking about what a special Case we really have. Noone, not one of his doctors, nurses or therapists have ever met a child just like Case. He's complicated and so far, un-figured out. It's been a long, exhausting journey and its only just beginning. But for every complication Case has received a hundred blessings. He was sent to us to show us how precious life is. He's opened my eyes to a huge, beautiful world of people who have hearts of gold and love that reaches far beyond their 4 walled home...

You all know how special Case is, I'm sure of that! But do you know how complicated he is? Do you know that he's been tested for thousands of syndromes and diseases and it always comes back negative? What about the fact that all the genetic councilors and Geneticists meet on Wednesdays to discus their most complicated Cases and he's been the topic more than once? None of his doctors have ever seen a case quite like our Case and most of them scratch their heads at him. His big genetic test, The Whole Exome Sequencing test came back yesterday. There were no tears. No fireworks. Nothing. No known syndrome was found yet. Just a lead to a possible syndrome. They will send his test back and his skeletal surveys somewhere else to see if he does have the syndrome they think he might. If that comes back negative, there is a chance the syndrome is so rare that they would "make it" based on all of his abnormalities. No joke. They even say they might name it after him (th...

It's been a busy few days of phone calls, paper work, vomiting and life. Case is still struggling through the night and into the morning. Dan has been working out of town and commuting 2 hours round trip making the days a little longer. Don't get me wrong, I'm not complaining and feel more blessed then usual. It's just been hectic here and tonight I prepare for a long day at CHP tomorrow. Big guy will have his first MRI (he'll be under anistisia for the whole thing) then we'll sign papers and give blood for the Whole Exome Sequencing test with genetics. It will take up to 4-6 months to get results. Tomorrow is a day of firsts and familiars. We've been at this for awhile and yet we're starting a new "adventure". We have no clue what kind of things they'll find with the MRI or the Whole Exome. This. Is. Out. Of. My. Control and a bit out of my comfort zone but it's part of the journey. I'm along for the ride. As I rock him to sleep ...

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, Case had a cluster of appointments and blood work yesterday and today. We arrived at the Children's Hospital yesterday morning. Our first appointment was in the feeding clinic. We met with Dr. Belest (she is Case's new pediatrician here at Children's. Anytime he is having any kind of trouble or I have any questions I can call her and she can help me or direct me to who can.:). Case's speech pathologist, Heather, an Occupational Therapist, a Behavioral Specialist, Case's nutritionist, Stacy and an amazing nurse named Georgia (I LOVE HER!). The feeding clinic seemed very productive. They changed Case's feeding schedule to 5 tube feedings a day and no night feedings. I will run these feeds through his electric pump for 30 minutes each. I have a feeling some days it will feel like all I do is feed him but that's okay, it's my job and  I've got the best job in the world! It will be nice for Case to have a break from feeds through the night. We are als...