My Family
3 kids with CF
Tuesday, July 6, 2010
Progress
So happy today! The kids are gaining weight. Abby is up to 61.6, Michael is up to 35.8 and Matthew is 18.4 pounds. At this rate, I will have to buy everyone new pants! I am glad that Abby comes home tomorrow. It has been kind of boring and quiet around here. I am so used to the chaos of three. I have gotten into the routine of hooking up Matthew's tube up at night. We are using 24 calorie an ounce formula and can't buy it, so I have to mix it at home. I am still trying to work out the recipe because the one they gave me is for ounces but the bags use milliliters. Math is not my strongest subject. I will be so glad when Michael comes home. I will have all my kids together under one roof for the first time in over a month. It is always hard being separated from them. I am so thankful that at the end of all of this is a trip to the beach. We will have time to spend together, as a family. After the past few weeks, I think it is just what the doctor ordered!
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ReplyDeletehehe..i didn't check that comment to make sure it made sense. what I meant to write was:
ReplyDeleteDear lord, I don't know how you manage with 3. My little CFer is 6, he's my only child and most days I feel on the edge of a break down. God bless you & your family <3 I've been reading back on your blog - I'm glad your 3 are home now. I know that every child's CF progresses differently, but I can't believe Michael came that close to being on the transplant list already. :( How scary - I'm so sorry you are even having to think of such things right now. Looking back, would you say that there was anything that made it worse for him than your other 2? Like a specific bacteria or an event? I'm worried about my guy & MRSA (he's had it since he was a baby) but it's gotten worse. Thanks for sharing your experiences.
I think Michael just has more lung involvement than the other two. All of mine are positive for mrsa and pseudomonas but Michael is just always sicker. Have they had you try a mrsa eradication? With only one it might be successful. We tried it (even though it seemed hopeless) and it didn't work. You should ask about it. It is a lot of work, but well worth it, if it works. Thanks for the questions!
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