Saturday, October 1, 2011

Appointment Update

We spent all of this past Friday with clinic returns for all three kiddos since their weights were all a bit low this last trip to the doctor. We were well over due on our their labs so we did 3 xrays+ 3 labs+ 3 flu shots. Just for fun :)!

Cayden is up nearly 4 lbs (praise God!) which was a huge relief since his weight dropped so much from his cough at last clinic. He is steadily getting more used to PFT's and Dr. Green is confident that he will be a pro at them in no time.

Cooper is also up 2 lbs even though we are barely trying (and actually purposefully cutting back).

Trinity also gained weight but a very small amount. And looking at her growth chart she does little change from month to month. And that's when the conversation took me to somewhere I was not at all prepared to go. Dr. Green felt it may be necessary to seriously think about placing a g-tube (feeding tube) for nighttime feeds. This would give her an extra 500-600 calories a day while sleeping. It's hard to think of the decisions you have to make because of CF. All I can think of is a 14 year old girl wearing a swim suit and having a permanent tube coming out of her body. And this burden-of deciding her future is in our hands. It's just unfair. I think of all the choices we need to make that we shouldn't have to for our little 3 year old. Making the choice to have a feeding tube shouldn't be one of them. We should be making decisions like which school she'll attend and what spring recreation sport she wants to go out for. But not this. It is too permanent. Too scary.

For now we have 2 options in our treatment plan. The first is to increase her enzymes although she is already on a much high dose for her body weight. The dietitian asked us to give her 4 weeks at the new dose before doing a weight check. The second option will be to chance her proton inhibitor (acid reducer med) from her current med (Zantac) to something stronger.

In the meantime Chris and I are trying everything we can to help our little girl eat all the extra calories we can. We talked a lot last night after the appointment about the need for getting help at mealtimes just to have someone keeping track of her finishing her plate. The dietitian suggested a reward system for when she clears her plate and finishes 3 Ensure shakes. We started it yesterday at dinner time :)

On a side note: Finding store bought high calorie foods is getting more and more difficult. I went to buy yogurt we used with Trin when she was a baby that is made with whole milk and VERY high in calories. I couldn't believe it when I went to Wal-Mart it wasn't there anymore. And every single yogurt is NON-FAT. So if anyone knows of a high calorie yogurt please let me know. I'm looking for it!!!

Continue to pray for Trinity. We have 6 weeks until we return to the doctor and we are running out of options. I am so not prepared to make this decision for my three year old...

1 comment:

  1. We use to get Stonyfield organic for Bella when she was a baby. I know they use to have it in the larger containers but only like vanilla and banilla(banana and vanilla) I think Pick N Save and Piggly wiggly might still carry it. We also use the Stonyfield YoBaby which i think is whole milk too. Not that my child needs the full fat, but I'm really annoyed that they only have nonfat yogurt out there too.