Last Monday we had 5 appointments. That's a long day.
1. Dr. Kelly - the helmet guy - is happy with her head-shaping progress, and doesn't expect to see much more change. He said that we could try another month and hope for some more growth, or we could just be done with it. Since the helmet was such an investment, we decided to give it another 5 weeks and see if we see any more change. I am a bit more lackadaisical about the 23-hours-a-day rule, though. Her hair is just so cute, and I love kissing the top of her little (big) round head. She's probably still wearing it 22 hours each day, which ought to be plenty as we wind down treatment.
2. The genetic counselor just wanted to see what concerns we have, I think. It was a very odd and awkward appointment. I couldn't really figure out what she wanted from us, and I think I offended her when I asked why the genetics department was still following us. Oh well. In the end, she was really willing to help...but I don't think I needed it!
3. The geneticist wanted to lay eyes on her now that she's bigger and see if it looks like there are any syndromes or conditions becoming more apparent. He's one of my favorite doctors (even has a daughter named Rebecca!), and we talked for a long time...because he still has some concerns. First off, he says that she can be diagnosed with septo-optic dysplasia (which kind of contradicts what the ophthalmologist said, but not really). Whatever. Whether you slap a diagnosis on her or not isn't going to affect her care. He also looked at her growth and had some slightly elevated suspicions about potential dwarfism. Most preemies show significant catch-up growth by this age, and Becca, as you know is still lagging behind -- you know, not showing any progress towards approaching the growth charts (quite the opposite, in fact). They don't expect preemies to be caught up to their peers by now, but most show that kind of trajectory. Since she's not, he wants to know why. It could be explained by her eating issues, but he wants to talk with the endocrinologist (the growth experts) and probably do another full skeletal scan to look for any bone composition abnormalities and/or a form of skeletal dysplasia (a.k.a. dwarfism). You may remember that we first visited this issue when we were still in Louisville, before Becca was born, because her long bones (her arms and legs) were lagging so far behind (probably because her smart little body was sending all of the few nutrients it was getting straight to her genius brain). It was brought up again when she was in the hospital, and they did a full skeletal scan then. (A skeletal scan is basically a series of x-rays that together show her entire skeleton. Pretty cool.) That's when they found her fractures -- otherwise, we wouldn't have known, tough kid. The skeletal dysplasia expert read them then and thought she looked fine. But now that she's bigger (not much!), they may be able to see something else. Again, we don't think there is anything wrong, but they want to check it out. Any way you slice it, though, she's probably going to be a little person, whether she's a Little Person or not. Unless we do growth hormones and they work their magic...but we'll talk with the endocrinologist about that next month. Incidentally, the geneticist said that, all things being equal, any daughter that John and I had would grow up to be my height (he did the calculations). Of course, all things were not equal with Becca, but it's helpful to know what her genetic potential is thought to be. I'm 5'6", by the way.
4. We scooted over to the helmet technicians to have them make the adjustments to her helmet indicated by the doctor. Not a big deal, but it was super annoying when we had to sit in the hallway outside their office for 1/2 an hour while they had lunch. We had a picnic in the hall, and I didn't even feel bad about the mess that Becca left. Yay passive-aggression!
5. After killing some time at the outdoor mall in Hendersonville and noting that the Barnes and Noble there had zero books on preemies (I was hoping for something about older preemies), we made our way to her feeding therapy evaluation at Sumner Station. We met Caroline, the speech pathologist, and she is awesome! Becca really liked her -- and the fact that she has lots of fun toys to play with in her room. After spending so much time in the carseat and the stroller, she was ready to get down and play! Caroline evaluated her eating (by actually watching her eat a bit and asking us a lot of questions about Becca's tendencies), and decided that it would be beneficial for us to see her twice a week. I was thrilled. After so much time and energy spent trying to get food in this girl, I am so relieved to have a professional therapist on board and helping us. I can't say that I've seen a miraculous turn around in Becca's eating in the past week and a half, but I feel about 50 times better about mealtimes now. I don't actually wake up dreading feeding Becca breakfast. Phew. We are trying a method called "food chaining," where you start with the foods that she will eat and then slowly introduce foods that are similar in appearance, taste, and/or texture. It's slow going, but our emphasis for right now is just on getting as much food in her as we can, so if she only eats cheese all day, I'm just supposed to give her as much cheese as she wants - and we'll worry about adding other foods later.
Speaking of food, I came home after that appointment to find our delivery from Just Tomatoes. Another preemie mom had told me about their products when I mentioned that Becca loves freeze-dried strawberries that only come mixed in with bananas - and there are only about 2.3 strawberries in each bag (because strawberries are so much more expensive than bananas). Just Tomatoes sells freeze-dried everything, it seems like, and you can get an entire tub of -- you guessed it -- Just Strawberries! Yum! Since Becca is really picky about her textures but will usually eat freeze-dried fruits, I ordered Just Strawberries, Just Blueberries, Just Corn, Just Carrots, and Just Peas. So far she loves the strawberries, is getting more and more into the blueberries, and has even eaten a few peas! Wow! I may even get the courage up to try a couple of peas myself!
Anyway...back to appointments....on Wednesday, we had our 1 year Early Intervention evaluation and planning meeting. I'll spare you the tedious details about our goals for Becca for the next year (I'm sure you can guess them -- you know, like have her grow and develop -- not rocket science), but I think you'll be really proud of her assessment scores! Remember, she's 15 months adjusted and she scored at:
11 months in gross motor skills (big motor skills, like cruising, pulling up, etc.);
12 months in fine motor skills (little movements - picking up cheerios, etc.);
11 months in communication (though when Caroline evaluated her, she thought she was more like 14 months);
15 months in cognitive skills (you know, genius baby and all);
15 months in social/emotional development (that's where the "demonstrating tantrum behavior" falls);
and 15 months in self-help skills (Becca do it!).
Since we are in physical therapy (gross motor) and speech therapy (feeding/communication) and going for our occupational therapy (fine motor) evaluation on Monday, we are right where we need to be. The areas she's behind in are the easiest to work with. I'm not saying that 4 therapy sessions a week is easy, but they are areas that you can do therapy in, so that's great.
And speaking of therapy, (wow, it's all connected tonight!), we kind of graduated from physical therapy this week. Becca's strong enough now that she will probably be able to move through the next few stages of physical development (standing without holding on to anything, walking, etc) without too much extra help. Jane's not discharging her because there's a good chance something funky will crop up, but we don't have an appointment scheduled at the moment either. That's pretty exciting. And a little sad, because we are big fans of Ms. Jane. But still exciting.
Today we were back at Vandy for a hearing evaluation. Becca didn't do so hot, though I'm not sure how they could actually interpret the results, as the process involved a lot of manhandling by mommy dearest. Becca was not a big fan of the headphone-y contraption she had to wear, and she wasn't too patient when they actually stuck stuff in her ear (can't blame her there). At any rate, she again showed a moderate hearing loss. It appears that her tubes aren't working; she still has fluid stuck in her middle ear, which is keeping her eardrum from moving properly...so her hearing is mushy (that's my technical term..."slushy" would also work, as would "muddled"). Basically, we are where we were at her last test 3 months ago - only worse. Of course, at the last test they said, "Let's wait and see," and it only got worse. Can I tell you how sick I am of "wait and see"? Seriously, we know something is amiss; let's fix it! We've had to wait and see our way into physical therapy, feeding therapy, helmet therapy, and on and on...and every time, mama has been right! So there's no more Mr. Nice Mom. We're going to get this hearing thing figured out pronto...
...after our ENT appointment in a month, of course. Ugh. I'm going to see if I can get it bumped up, but I'm not too hopeful, as Becca's schedule is quite full with therapies, and the ENT office is notoriously hard to schedule with. The plan at this point, though, is to see the ENT (remember, not one of my favorite doctors!), see what he says, and then do another ABR (the really extensive hearing test for which Becca will be sedated). There's a really good chance that the doc is going to want to wait and see until she grows some more...and if he says that, I'm pretty sure I'm going to tell him where he can shove his little ear probe thing. Okay, maybe I'm not that bold in person, but, wow, I'm sick of not getting answers. At least now we kind of have a plan, though. If the ABR comes back clear, it's probably an issue with the tubes, and we'll have to look at a different kind of tubes for Becca, but I don't know much about what the options are. If the ABR shows permanent loss, we'll do hearing aids. I'm fine either way. Let's get to the bottom of this, though.
Oh my. These doctors didn't know what they were in for when Becca came along...and they definitely didn't know what they were in for when I became Becca's mom. Watch out for the Hill girls!
Phew. We've been busy! On the upside, though, Becca got to meet yet another boyfriend today! We were soooo excited to get to visit our nurse Carla and meet sweet Eli! He's beautiful and cuddly and adorable, and Carla and Ethan are wonderful and glowing (though sleep-deprived) new parents. I'd post a picture, but I left my camera at their house (an hour away, right before Christmas - silly me!). Besides, you might just melt into a puddle when you saw the picture of Becca and Eli holding hands, and then you'd have to clean yourself up.
And that image makes it pretty clear that it's time for me to go to bed. Hope you feel caught up on the medical side of Becca's life!
Nancy, I don't know which ENT Becca sees, but I'm pretty sure it's one at Vandy. We have one we really like there. His name is Dr. Jay Werkhaven. (Maybe he's the one you don't like; I don't know.) Anyway, we thought he was really good.
ReplyDeleteGlad to know that you got confirmation that Becca is the genius girl we all know she is! :)
So glad to hear an update on Becca! Glad to know she is doing well!
ReplyDeleteSteve loves dried strawberries as well. He bought a food dehydrator, mostly to make jerky, but also to dry strawberries. It's pretty easy to use, so maybe it's something you can look into!
It's interesting to hear about the adjusted age. Aubrey is not a preemie, actually, but she was 3 weeks early. There are a few things that make me think that the delayed age might be helpful for us. For example, she just cut her first tooth, but she is almost 8 months old. Also, her rolling was delayed from the "norm." Anyway, it was just helpful for me to think about, so thanks for sharing!
Hope you and your family have a blessed Christmas!
Nicole, 3 weeks is a normal variation for all developmental milestones. Kids vary so much that they can't pinpoint specific weeks/months for most things. That's why most developmental checklists have a range. 7 months is average for a first tooth, but 8 months is also considered normal! But hey, if it helps to keep track of her adjusted age, do what works for you!
ReplyDeleteGood luck with the ABR! Our little guy has a moderate loss in both ears and his hearing aids help him a lot.
ReplyDeleteWe have an "adjusted age," too, but for hearing only (for kids with congenital hearing loss, they calculate their "hearing age" for language development- Nolan's hearing age is four months behind his chronological age). They calculate hearing age by when kiddos first get access to all the speech sounds via hearing aids (or cochlear implant, for little ones with more severe hearing losses).