A Very Special Case.

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

When I made Case's facebook page this past October, I dove head first into a cyber world of blessings and heartache. A world where a momma can tell me "I know just how you feel" and mean it. A world where you won't see many complaints on children having common colds or colic. Instead you'll see Facebook status's begging God for just one more day to love on a sick child or pictures of tubes, wires and smiles. This is a beautifully sad and happy world. In this world one day you'll see a gorgeous baby on your computer screen and the next day he's gone. Our children's days are numbered and in the "sick kids" world it's more apparent than ever! Instead of complaining of a broken furnace families are thanking God it's "ONLY a broken furnace"…I've made long term friend's with momma's Ill never meet face to face and if I did, I probably would only know who it was by the special child in her arms. I am daily ove

Today is day one of Feeding Tube awareness week. The topic today is: "Tell your story. Educate people as to what life with a tube feeder is like." Case has struggled with eating his whole life. He spent 38 days in the NICU leaning how to eat. I finally got him to take just enough breast milk from a bottle that they took the NG tube out of his nose and sent him home. Once home the battle only got worse. Case had to be fed round the clock every 3 hours with pumped, fortified breast milk. I was the only one he would take a full feeding from (and by full feeding, I mean 1-2 ounces, at best). He had a weak latch, swallowing issues and other birth defects/stomach problems we didn't find till later in his life. I continued to try to get him to breast feed. The harder I made him try, the more weight he'd lose. Finally, after 4 months of pumping, fortifying and begging my milk dried up and I grieved. I grieved because my hopes and dreams of a breast feeding, 4th

Since before his birth doctors and nurses have "warned" us that no one knows what to expect from Case. They don't know if he'll always be around, if his health will drastically decline or if someday his other organs (beside his stomach and kidney) will decide to not work right. We don't know what Case's future holds but here and now he is our son. He is strong. He is brave. He is a miracle. Please take 5 minutes and watch this beautiful video that show what a blessing God gave us!:) WATCH HIS VIDEO BY CLICKING HERE!

As the day approaches for us to get the results of the Whole Exome Sequencing Test (an extensive, expensive, 6 month long genetic test that used the blood of Case, his father and me back in October) I've been thinking more about why God made Case different than He typically makes a baby. When Case was formed in my womb, many parts of his body were formed uniquely, some may even say incorrectly. His organs don't all work, his heart has several abnormal variants, his mouth, feet, brainstem, and even skin are "different" than yours and mine and that's just a few of his differences. This test is supposed to find the syndrome that links all of his "problems" together. I have mixed emotions about this test. It could find markers for cancer, Alzheimer's, or another horrible disease. It could say that all of Case's "problems" are carried from me or his dad. It could even tell us Case's days are numbered. I know that some people pray for c

Case is just SO cute!