A week ago today, the kids had a visit to Vandy for CF clinic. It's a time I generally dread, mostly because we are in for a long morning there (this time was three hours; our longest was around five). I try not to complain because they are a great group of health professionals who know and treat my kids well, but I'm sure most parents would agree that spending several hours at a doctor's office with nothing for the kids to do is not exactly ideal. This time, however, I brought the kids' portable DVD player and their lastest obsession, Disney's Tangled, to watch in the exam room since the majority of the visit is me speaking to the doctor/nurse/respiratory therapist/nutritionist/social worker/et cetera about how the kids are doing, their daily routines, their medications...the list goes on. Very little of it are the kids actually being "examined," so, needless to say, the DVD player was a lifesaver, and the kids were "tangled up" in Tangled. (Sorry, couldn't resist the pun.)
For the most part, their visit went well. Emberlynn had not gained much weight, but she has shot up in height over the last year, and her weight just hasn't quite caught up to that yet. Still, she is in about the 75th percentile for BMI, and as long as the kids are in the 50th or above, it's not a concern. Cohen, however, is only in the 31st; he was in the 22nd at his last visit, so there has been some improvement, but not much, even though he gained two pounds since his previous visit, which was the end of June. I thought gaining two pounds would have more of an impact, but my excitement was shot down when I learned it hadn't made much of a difference in his BMI.
If you have read previous posts, you will have read about Cohen's weight struggles (which have only been in the last eight months or so) and the suggestions we have received from the doctors and nutritionist to consider a g-tube. Emberlynn has a g-tube and has had one for four years now, so we are definitely not strangers to it, but we are worried about how Cohen will adjust to such a major change. Emberlynn was much younger and easy-going, so it was natural for her to be able to not notice a giant tube coming out of her stomach. Cohen, however, is almost four and would yank that tube out in a heartbeat, guaranteed, which is why Matt and I are reluctant to go through with the surgery. (We have been informed, however, that some surgeons there will place the button in immediately after surgery rather than the temporary hose-like contraption that Emberlynn had for the first several weeks. This will definitely help with our decision, should we decide to okay the surgery.)
The fact that Cohen has put on two pounds in two months, which is more than he has put on the entire year, gives me hope that he will catch up within a few months. He has been drinking his Pediasure, which I am sure is the primary source of his recent weight gain. Our goal is to get him up to two containers a day (currently, he drinks about one per day).
While all of Emberlynn's medications and dosages stayed the same, we are switching Cohen's antacid medication in hopes it will help the enzymes be more effective, which in turn helps him absorb more fats and nutrients from food, which therefore would lead to better weight gain. I also mentioned that Cohen has been sneezing a lot (every morning, he immediately starts sneezing when he wakes up and then sneezes throughout the day), so the doctor prescribed some Clarinex to help dry it up so that the drainage doesn't eventually become a problem in the lungs.
And while we are on the subject of the kids' growth, I will update you on Kyden as well. At his two-month check-up, he was in the 50th percentile for everything (height, weight, and head cirucumference), so he is right on track. He is currently outgrowing his 0-3 month clothes and size 1 diapers, something I am not used to at all (a fast-growing child) and is laughing (SUPER cute and heart-melting) and babbling a lot. He will lay in my lap and just talk and talk to me. He has also been trying to roll over. It's hard to believe that exactly just twelve weeks ago, he was a newborn baby taking his first breath.
We will be returning to Vandy on October 6 for a clinic visit for Cohen (mainly to check his weight) and for a routine chest x-ray. If his weight hasn't improved more, they will most likely push us a little more to do the g-tube surgery, but we feel that if he has made progress and continues to move up on the growth chart, then there is no need to do a g-tube just yet, if ever. Both kids return for a regular clinic visit on December 8, assuming they stay well (as in not coming down with any respiratory illness that would warrant a visit to Vandy). As fall and winter approach and flu season looms ahead, we always just pray for the best.
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