|At 2 months you can see the difference between the two babies. They were only about a pound different at the time.|
Bryson is a little guy. He always has been. I'm pretty sure it's because of his Cystic Fibrosis. We have fought and fought and fought to get some meat on the kids bones every since he came home. Well actually before that even. They worked really hard while he was in the hospital as a new born too. The doctors have been telling us off and on to consider a feeding tube for him. We, as his family didn't want it to end up there so we did EVERYTHING in our power to get him to eat. He was on a special formula called Pregestimil. Its a high fat, pre-digested formula. It helped for a little while, but not long enough so his dietitian had us up the amount of powder to water to make it higher in calories. He grew slowly, but he grew. (through all of this, we were needing to take him to the Dr every week to be weighed!)
|Here he is at 2.5 months. Such a little thing.|
|Almost 4 months old he was a little over a pound different.|
|He is such a happy little guy!|
So we went back to Doernbecher a few weeks ago and they put him on a Kids Boost Essentials. This stuff is 45 calories per oz, they told us to stop his formula and only give him the boost to drink and offer him anything and everything that is fattening to us.
I have very mixed emotions about this. I know in my heart that he does need this and I know he will get bigger and hopefully reach the 50% like Bridgette. But I can't help but feel like a failure too. I hear about and read about so many other CF babies that don't need this, or at least not yet. Am I missing something? Is there more I should be doing to help him gain? It's just such a weird thing. I fight with my weight, but at the other end and people say, " Wow, I wish I had that problem" If only you knew! I personally know what it's like on both ends of the spectrum now. I wouldn't wish this problem on anyone. People don't realize how unhealthy it is to be so little. Of course we all know that being obese is a health risk, but being malnourished is too. Right now, Bryson isn't even on the growth chart and is considered "failure to thrive".
The reason this is such an issue is because Cystic Fibrosis is not only a digestive disease but a lung disease too. When the kids don't grow, then their lungs can't grow and when the lungs don't grow properly in the early years it sets them up for more issues later. And that is where the real problems start. I guess the bottom line is, I would rather my son have a feeding tube now, if it can (hopefully) prevent him from needing a lung transplant later!
I also had to fight with the insurance company for days to get them to cover his TOBI. So to all the CF parents that are having issues with insurance companies not covering things, FIGHT it. Of course they don't want to pay, but if you push it, chances are, they will cover it in the end. Be a strong advocate for you kiddo, If you don't, who will?
Thanks for reading!!
Thanks for reading!!