I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Monday, June 20, 2016

4 Pounds of Awesome : The Smile Says It All



We went to the CF clinic today. Orson had a jaw dropping moment in the vitals room. He stood on the scale to see 40 pounds! This is huge! This is big! What a day! He has worked very hard and with a new combination of many changes since the April 19th visit of this year he has gained approximately 4 and 1/2 pounds in 62 days. For a boy who had had trouble keeping weight on for 2 years this is a massive hip hip hooray!

35 pounds 8 ounces to 40 pounds! He was very proud. If I could have been doing backflips through the halls of the hospital I would have! The nutritionist said she hasn't ever seen that big of a gain in that short of time for a kid with the same pattern Orson has had.

He went from the 6th percentile on the CF growth chart to the 61st percentile. So so so huge. What a blessing to his body and what an encouragement to keep up all the work that goes into gaining weight for this boy!

After we were done with our first round of congratulating and cheering for him he told me and my Mom that we should get on the scale and see if anyone would cheer for us. We assured him they wouldn't, but thanked him anyway for the idea. What a day! What a boy! What a needed tender mercy from Heavenly Father! 
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