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Saturday, November 29, 2008

Update on the babies

It's been only a month (!) since the babies were diagnosed with SMA. Boy, that day feels like a year ago, not just a month. I thought I'd update on what's going on in our little corner of the world.

Since SMA affects the muscles, there are a variety of concerns and precautions to be taken to preserve their health, now and in the future. We have a half-dozen specialists involved in their care now. Whew! We need to find a house closer to Phoenix Children's Hospital!

They see a pulmonologist now, because when an otherwise healthy SMA patient gets a cold and secretions can't be expelled from the lungs completely, infection sets in and it can be deadly. We have on order a machine called Cough Assist, which uses positive and negative air pressure to force a productive cough, which I'd like to think we'll never have to use, but I imagine we will. The pulmonologist also has ordered sleep studies on them, to monitor their oxygen levels at night while sleeping. Something about if they aren't breathing deeply or adequately at night, it can cause the lungs to not fully expand and affect the way the chest cavity develops as they grow. (Or something like that.) They may need to sleep with something called a bi-pap machine, which I don't know much about except that it looks sort of like a c-pap machine that my father-in-law used to have to use at night.

The babies also see a pediatric gastroenterologist, to monitor them for feeding issues. As the mouth/tongue/throat all rely on well-funtioning muscles to keep food going the right direction, any weakness in these muscles could cause them to aspirate liquids. And if they can't give a good productive cough to expel those liquids, then again there's a risk of infection, which could result in a hospital stay and can certainly be deadly. The GI doctor has ordered swallow studies on the babies, where they consume barium and the act of swalloing is monitored on fluoroscopy. This way, they can see exactly how well the tongue and other muscles are serving them and we can address any issues before aspiration becomes a danger.

The babies have an appointment with a pediatric orthopaedic surgeon next week. Evidently, curvature of the spine (scoliosis) is a certainty for SMA patients. It makes sense if you look at Kyle and Lauren today--when they sit, they are not strong enough to sit up straight, so they sit hunched over all day long. After a couple years of this, it's a permanent problem with the spine, and next comes spinal surgery to try to correct it. So we expect that the orthopaedist will prescribe back braces for them (there better be some pretty ones out there, because I am not dressing my sweet babies in ugly black equipment! Maybe someone makes back brace covers on eBay...).

As for their current state, they continue to progress very slowly. Lauren can push herself backwards in her walker several feet over a period of a few minutes. She can roll over all the way to her tummy and push herself to her back again. Her language skills--both verbal and sign--seem like they're just exploding (though the therapists assure us she is not ahead of that curve, just right on track!). Kyle still struggles to sit on his own for very long, so he spends much of his day in his Bumbo seat, in his toddler recliner, or in a special foam seat that the physical therapist concocted for him. In addition to "grandpa", Kyle's current favorite word is "play". He always wants to play! From the moment I get him from his crib in the morning, to the moment I bring him upstairs to put him to bed, he says, "Play! Play!". The kid loves his blocks. The babies' current favorite activities include block stacking, button pushing, little cars that they can vroom vroom back and forth, and anything Elmo or The Wiggles. Lauren is on track, or a little ahead, when it comes to fine motor skills. Kyle struggles to catch up, but he's getting there. He loves to please us and impress us with the number of blocks he can stack on his tray. And Lauren is just a joy to be around! I have a video clip to upload of her, when she sees our lit Christmas tree for the first time. She's just a doll and such a riot.

We'll be talking to the doctors about getting them their wheelchairs in December. Even if I don't take them everywhere with me in their wheelchairs, even if they're just something to use at home only for a little while until we absolutely need them all the time, it will be good to have them. We don't have many safe places to put the babies since they don't sit very well. Even in their high chairs, if they lean over and down the side (for some reason they like to do this all.the.time!), they can't right themselves and I have to come over and lift them back up into sitting position. It drives me crazy, and they know that and seem to revel in the thrill of my scowl. So I'm looking forward to getting their wheelchairs. Even if it means we need a one-story house now, in order for them to get around on their own, eventually. I hate thinking about that, because I love my house and my neighborhood, and Jenna starts kindegarten next year and her school is just 5 houses down the street. Sigh. Oh well, I know it will work out somehow.

We all, except Chris, got our flu shots this year. And I'm to keep the twins' exposure to the weather and to the public to a minimum. We don't want to risk them catching a simple cold and have it develop into something bad like pneumonia. Chris didn't get a flu shot because a) he wasn't there, b) he travels so much that if he's exposed to the flu, it likely won't be the strain against which he was innoculated, and c) he's in the flu-shot-is-hogwash camp anyway. He knows that if he catches the flu, he's going to have to camp out in Jenna's plastic playhouse outside, or check into a hotel or something because I will not have those kinds of germs in this house! Not with these babies who are so susceptible to a cold turning into so much worse.

So, that's it from here. We're having fun getting ready for the holidays. Choosing gifts for the babies this year is a challenge, since they have such physical limitations. But somehow I'm managing to come up with some good ideas that they'll love (hello, TMX Elmo). And I'm all but finished with our Christmas cards--neener neener neener.

Happy December to all!


  1. I posted a comment on your myspace page, but I had to comment on this because that pictures is SO cute. I think Kyle looks like your dad!

  2. Do you think? That is too funny. There are certain looks he gives sometimes when he is the spitting image of Chris' dad. And then other times, he looks very Asian, and still other times when he doesn't look Asian at all! It makes me feel good, though, that you see my dad in him. Perhaps SOME of my genes made it to one of my kids! LOL

  3. I totally see your dad in him, I noticed it before in other pictures. I don't know, maybe it's the smile? I'm not sure who Lauren looks like - lol. She must have most of Chris' genes.

  4. Honey, I had no idea about any of this. I'm sorry. Wow and both of them too. It sounds like you have a great team of doctors and specialists working with them though.