Tuesday, February 26, 2013

A complicated 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 (that might have been a joke). I think what's hard is his whole life has been full health problems, birth defects, disabilities, abnormalities etc. and there's no telling if or when the difficulties for him will stop. Or if his care will ever slow down. There's no predicting his future as far as growth and health. Don't get me wrong, we really think he is perfect just the way he is but we would really like to know all of what's going on in his tiny body so he can get the best care and have the best quality of life. This guy is a mini mystery. A blessing of complication and unpredictability.

Sunday, February 24, 2013

In the sick kids world…

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 overwhelmed with the love and generosity of complete strangers and soon these complete strangers are dear friends. I'm so thankful I decided to share Case with the world and am overwhelmed by the tough of him having 7,400+ fans (and growing). :) Even though my news feed in flooded with prayer requests, funeral arrangements and praises I wouldn't have it any other way! The child that I was given as my last has opened my eyes and my heart to the good distill left in a world of heartache and for that, I am for ever grateful!! 

Sunday, February 10, 2013

My Super Tubbie!

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 child were simply unattainable. We switched Case to full formula feeds and I battled daily to get him to eat enough. I was still the only one who could really feed him and feeding him was painful.

It involved tapping the bottle, chin support, wiggling Case, holding his hands down, etc. We took Case to his pediatrician every week for several months to have weight checks.

  I was excited to introduce table foods and hopeful that things would get easier. They didn't. I had to strap him down and force feed him. He spit on me, threw up on on me and cried at me. I cried too.

 I couldn't do for my fourth what came naturally with my three children before him . I couldn't make my  baby eat and grow. Finally, at 11 months old and less than 10 pounds he was male-nutritious and needed a tube. I felt defeated and hopeful at the same time.

 During Case's G-Tube placement they also did a Nissen fundoplication to stop the vomiting but Case started retching (violent dry heaves) all the time that he now overcomes the fundo and eventually throws up anyway. After the tube insertion and 5 days inpatient we went home. I thought the feeding battle was over but it wasn't. The tube was a blessing but Case's body still wasn't digesting and absorbing right.

 6 months, four pounds, two ER visits and lots of retching/vomiting later his G-tube was switched to a GJ. He now is fed 22 hours a day into his J and "vented" 24 hours a day out of his G.

His tubes saved his life and although he is a barely 17 pound 25 month old he is alive. He is happy and he is strong. His feeding battle isn't over. I don't know if he will ever fully eat by mouth or if the tube will ever come out but I know that after 14 months of tube feeds, beeping pumps, G-tube yank out, GJ- tube yank outs, trips upon trips to CHP, vomiting, retching, Meds, bags, feeding back packs and more I couldn't be more grateful for his tube and his doctors that have listened to me cry, responded to 11pm texts messages and are dedicated to finding the best way to nourishing our complicated Case.

We may never figure him out compleetly but we will always have his lifeline that hang out of his wee belly.

Saturday, February 9, 2013

"He's not just anyone. He's my son."

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!:)

Friday, February 8, 2013

Case is Case and that is that.

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 complete healing for Case and I appreciate that but that's not my prayer. You see, God has always answered this one prayer I pray for His boy and that's "Your will be done." I believe with every fiber in me that Case was made special for a very special reason. No pastor, doctor or test will convince me otherwise. Sure, I ache when Case aches and I cry sometimes but I know that I was handpicked for a VERY special job. One that I will never take for granted and I thank God for Case's differences. When God knit Case together in my womb He used a different kind of thread and like I said before, different isn't defective, different in beautiful.