Monday, October 7, 2013

Week 7: Liquid, fragile, potentially hazardous

This week we had our third visit to the CF clinic at Children's.  We all felt like we are finally getting the hang of these visits, and this one felt much less stressful than the first two.  As someone who has been very healthy her whole life, I think I have that not-uncommon fear/loathing of hospitals.  But, for Lemon's sake, I really need to put that out of my mind, since regular hospital visits will always be a part of his life.  Since babies are so sensitive to the emotional state of their parents, it's very important for Papa Bear and me to remain calm during these visits to reassure Lemon that all is well.  

The first exciting thing that happened on this visit was Lemon's weigh-in.  He hadn't been weighed in two weeks, so although we could tell that he'd grown, we didn't know how much.  Then, we put him on the scale--10 pounds!  He has continued to grow at roughly 1.5 times the normal infant growth rate, and is rapidly closing on the 50th percentile for his age.  He's so big, in fact, that we now have to double his dosage of enzymes, from one pill per feeding to two.  Everyone was really thrilled with his progress, including Lemon himself!

We also turned in our first set of paperwork for Lemon's clinical study, and got our new handouts for October.  As part of the study, the researchers need a stool sample at every visit.  On our past visits, Lemon has been pretty cooperative about producing a nice fresh one sometime during the appointment, but lately he's started going through fewer diapers per day (yay!), and as our visit was drawing to a close, there was still no sample.  So, the study coordinator gave us a kit for sending in a sample (ie a pre-paid envelope to mail a dirty diaper via the United States Postal Service).  I really had to wonder to myself how I would respond to the earnest question of the postal clerk when I went to mail the thing in--"Does this package contain anything liquid, fragile, or potentially hazardous?"  "Ummm...no...not exactly..."

Fortunately for the USPS, our stay at the CF clinic was extended by Lemon's first chest X-ray, during which he did manage to produce a nice sample for the clinical study. The purpose of this X-ray was just to record a baseline measurement so that his doctors have something to compare with in the future.  I once again got to play the role of physician's assistant/baby immobilizer.  I put on a heavy lead smock, and then held Lemon still with his arms above his head while the technician took two X-rays, one from the top down and one from the side.  Lemon took the whole thing really well and didn't protest at all.  I was reminded how funny a baby's proportions are--with his arms held over his head, Lemon's elbows are about level with his ears, and his hands can just barely touch each other over the top of his head. 

















Finally, this week I signed up for my first fundraising event for CF: the third annual Boston CF Climb, which will take place on October 20 at One International Place near the Boston Waterfront.  There, I will join lots of CF parents and other supporters in climbing the stairs all the way up to the top floor of the 46-story building to raise money and awareness for CF.  You can view my fundraising page by clicking HERE!  I've set the relatively ambitious goal of raising $1500 in just two weeks.  Please help me (and Lemon) by making a donation today.  As always, thanks to all of you for your support! 

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