My Plate Overfloweth

As I type this, my three-year-old son Cohen (soon to be four...wow, where has the time gone...) is running around in his sister's dress up clothes, adorned in a purple skirt, a butterfly tiara, plastic high-heels, and a pair of sunglasses with one of the lenses missing. He is also golfing with a plastic golf club. It's quite a sight. I have many pictures of him dressed up in similar ways, which I'm sure he will totally appreciate in later years, especially when he starts dating.

Cohen has been struggling with his weight gain (or lack thereof) for nearly a year now, and the topic of a feeding tube has come up several times in the last few clinic visits (more about that in previous blogs, if you're interested). His next clinic visit is next week, only a month from the last visit because they want to see if his growth is progressing and to therefore determine what our next step will be (tube or no tube). So I have been weighing him every week since the last visit and am happy to report he has put on two pounds in just four weeks, which I think is pretty significant. I hope the docs will think so, too.

As many of you know, I took on the challenge of homeschooling my oldest, Emberlynn, a couple of months ago when she started kindergarten. She is enjoying it and picks up everything with ease, but sometimes I feel like I have bitten off more than I can chew. We chose homeschooling because it was the most logical thing to do given the kids' treatment schedules; we felt she would have no life beyond school and treatments. She would have to get up very early every day and therefore go to bed very early at night (about seven p.m. to be able to get about ten hours). Between school, homework, dinner, treatments, and a normal bed routine (bath, brushing teeth, reading books), we didn't see how it would be possible to get it all done and her still have time to be a kid. Granted, there are plenty of CFers out there who do go to school and have similar routines, so I realize it can be done, but we felt like since I stay at home, it only seemed right to homeschool and free up time in her day for her to do other things (playing with her brother, going to gymnastics, etc.).

But I am admitting to everyone that my plate is just too full, and we have considered putting her in regular school next year (if not next year then the year after when Cohen goes to kindergarten so that they would be going together). Plus, part of me feels I am depriving Emberlynn of a lot of social opportunities that she would get if she was in an actual school around other kids. She really loved preschool, so I know she would do well in a school setting, but she also tells me she likes doing school at home.

I've really been at war with myself over this lately, wondering if we have made the right decision to homeschool. There are so many pros, but there are several cons, too, and I can't seem to ignore those. The bottom line is that I want my daughter to thrive and have the best life possible; I want this for all my kids, obviously. If I stop homeschooling, I will feel like I have failed in a way, but if I continue, I don't know that I can give it my all like I want to, which would not be by choice but because I am just not Supermom. And I can't do it all. And if you know me well, you know how hard it is for me to admit that. My husband tells me all the time that I can't do it all and am not expected to, but day in and day out, I beat myself up over stupid things that I feel like I should have gotten done, even if it's as petty as leaving dishes in the sink at night because I didn't get around to doing them.

What it comes down to is how my kids will see me as they look back when they are older. I don't want them to remember me as a crazy, stressed-out mom who felt like she had to do everything or would freak out. If that means I don't homeschool, then maybe I'm doing them a favor. For now, as they say, we will "keep on keeping on" and hope for the best.

"Tube" Be or Not "Tube" Be

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.