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.

Tuesday, December 22, 2015

One Gram at a Time


I sat down with a GI doctor and a nutritionist this week in regards to Orson and his weight gain. Initially the visit started with vitals and weight check. I was disappointed to see it hadn’t increased more than an ounce or two if even at all. Then the microscope of nutrition was pulled out and my eyes were opened.

It was explained to me that from July to December, since they had seen Orson last at that particular office he had only gained 0.1 grams a day (keeping in mind that google says that a gram is about 1/6 of a teaspoon surely 0.1 of that amount isn’t even visible to eye). But then they calculated how much he had gained from his December 1st appointment until 2 weeks later at the GI appointment and he had jumped to 26 grams per day! So if he can sustain this “catch up” phase that he is doing now with 2 full cans of “milkshake” at night then we will go nuts!

It was fantastic to see that even though the “pounds” number that I can see and am familiar with in regards to weight isn’t moving like I assumed it would, that his body is indeed growing and making progress now that he has been able to work up to the two full cans at night. We are excited by this information and know that Orson is being helped along the way by us, but most importantly by an aware Heavenly Father who knows how Orson needs to grow best!
Also it gives a girl hope when you see that changing things one gram at a time, or one mess at a time in my case and at my house, can eventually make a dent!

PS - Also as a random side note we had a cool opportunity to see Florida State play here in Arizona! It was nice to see other people with Seminole gear on!

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