1. I am almost completely healed from all my various itis'es and sprains and strains. I'm back golfing, and am slowly getting back to running (after a 3 week hiatus).
2. Chris has booked his trip back to MS for his 20 year high school reunion. In Mississippi. In July. What a masochist.
3. Jenna only has two weeks of school left. What the.... ?
4. Lauren is doing great. Tonight, she only called me Captain Feathersword, and only answered to "Murray Wiggle". Jenna was "Jenna Wiggle" and Kyle was "Max Wiggle". Not sure what that was about, because there is no such thing as Max Wiggle.
5. Kyle still does not have his wheelchair. Not even close. In fact, he might be further away now than he's been this whole entire process--it's been one year since we began this journey. He also has significant knee contractures. And he's so low on the growth chart (does anyone have a link to that "special needs children growth chart" from the NIH?) that the neurologist is writing a letter to our GI doc to recommend a feeding tube. Kyle (and Lauren, too) cemented that argument by choking on their juice boxes. The neuro is contacting our GI doctor to recommend feeding tubes before next fall.
So, I'm not opposed to getting my kids what they need, but I hate that they seem to be getting stronger in so many ways, yet continue to choke and potentially aspirate liquids. This is it, kids. If we make the decision to install that feeding tube (mickey button), it's in there forever. Is it the right choice? Is there hope for a sudden leap in swallowing strength in the near future? Or do I give up and go with the option that painlessly adds nutrition and calories and bulks him (them?) up a bit before next flu season? And that option, ugh, it means adding an externally visible sign that says "I'm not normal" and also reminds me of that fact every day? I do a decent job pretending that there's nothing wrong with the twins, most of the time. Dealing with a g-tube and boluses and whatever else...well, to be honest? I thought we would have cured SMA before I had to make these decisions. They'll turn 3 next month. They've beaten the odds. But I do want them to be in the best possible shape to survive all their future flu seasons. Proper nutrition is key. I get that.
I'm going to get pity-partyish if I don't stop now. It's just that I don't want to tube feed my babies. I want them to eat what every other two year old eats--hot dogs and goldfish and juiceboxes. And I don't want them to aspirate while they do it.
We've resumed our house hunt. Our "perfect wheelchair accessible house" that we've had a contract on since last October finally got foreclosed on and the bank sold it to another buyer this week. Chris and I are wondering if we shouldn't increase our price range and just buy a home on a golf course. It'd decrease the mileage on my vehicle (and increase our popularity among friends) significantly.
Happy Weekend. Peace.
Nicholas has been having a hard time keeping weight on, too and so we've been trying everything we can to up his calories before the feeding tube becomes absolutely necessary. We've been using Pediasure (the generic kind with fiber) and blending it with vanilla ice cream or high calorie carnation instant breakfast. I also just ordered Kids Boost Essentials from RiteAid online which is the stuff they get fed through their g tube. It's triple the calories of pediasure and Nicholas's neutritionist recommended we try it before doing the g tube surgery. I am hoping it gets delivered this week! Anyway, while he hasn't been choking, he's been refusing to eat any solid foods, except for oatmeal and crackers which his neutrionist seems to think may be caused by the fact that he's cutting somthing like 4-6 teeth right now and his gums are super swollen. He drinks the pediasure like it's going out of style. Maybe you could try the Kids Boost Essentials before you have to go the surgery route to see if that helps Kyle gain some weight. Have a great weekend!
ReplyDeleteHey there! Just poppin in to say "hi!"! Hope the house hunt goes well, yeah, I say push for the house on a golfcourse;)
ReplyDeletexoxoxo
I can definitely see the benefit of the feeding tube. Even if it was just used for meds and to make sure they stay hydrated if they get sick and are having trouble getting liquids down. But if you can get their extra calories this way then eating can be enjoyable and not stressful. I can really see your not wanting tubes, but they won't make the kids different, just easier to keep strong.
ReplyDeleteDo you have some Thicken Up for their juice? That stuff is awesome.