To end another busy week (is there any other kind of week??), we are getting ready to go camping! So I gotta make this quick!
Our case worker found a spot for him in a speech therapy play group! Still waiting to hear when he can start.
He had a hearing test a couple of weeks ago and it looks like his hearing is fine and all the parts of his ears are working fine. (He is followed by audiology because his submucous cleft palate puts him at risk for hearing and ear problems. So far he hasn't had any. Yay!) The test was really interesting to watch. She gave him toys and showed him that when he hears a sound, he is supposed to add a toy. For example, they started with a ring stacking toy. So every time he heard a tone, he was supposed to add a ring to the stack. Then they did the same with putting blocks in a tub, and lastly with stacking blocks. He did amazing! The tone would sound, he'd look up at the doctor and hold up the toy as if to say, "Now? I do it now, right?" And she would nod and he'd add the toy. He nailed it.
|These are blurry because of the two-way mirror. Henry and I were in the outside room watching Calvin. |
Calvin was in the booth with the doctor.
Poor Henry was so sick with a fever for several days, followed by several days of a runny nose! He is finally well again, I'm glad to report.
The swallow study was last Monday and oh it was stressful. Doctors talking fast, giving instructions to one another, adjusting Henry, telling me when to start and stop feeding him, switching bottles, switching nipples, and me only vaguely knowing what is going on! Basically they took an x-ray video of his throat while I fed him liquids at different consistencies and with different bottle nipples to see what thickness of liquids he is able to swallow without "aspirating." Aspiration is when a little bit of the liquid actually goes down the trachea into the lungs.
On Thursday we had an appointment with his feeding therapist (OT) and she explained the findings of the study. They tested two levels of thickness and they referred to the thinner one as "thin" and the thicker one as "nectar." Henry was able to swallow the "nectar" thick liquid without aspirating. When drinking the "thin" one, he aspirated several times, regardless of which bottle nipple was used (the different nipples make the liquid flow faster or slower). Normal formula would be a "thin" liquid. Meaning that when he drinks formula, he is likely aspirating a teeny bit every time.
So this means we have to thicken his formula to a more "nectar"-like consistency using a special thickener called Thick-It. But it's complicated because the thicker it is, the harder it is for him to suck it out of the bottle. But the thinner it is, the more likely that he will aspirate. So there's a process of trial and error involved in finding just the right thickness and also the right bottle nipple.
THANKFULLY, after just a few days of this formula + thickener circus we seem to have struck a balance that is working! Other good news is that the swallow study confirmed that he has no trouble eating purees, so he can keep eating his solid foods (with oils added for calories!). And the best news of all is that I have seen a big improvement in Henry's mood, energy, and appetite over the past 24 hours, ever since we hit the sweet spot with the Thick-It. Fingers crossed and prayers lifted that it's not just a fluke and that this new feeding plan will work for a good long while! It is so reassuring to see him happy, fed, and ready to play.
Speaking of play, Henry also had his first physical therapy session this week. I like our therapist and look forward to seeing her every week. She will come to our house every Tuesday to work with Henry for an hour and it's during Calvin's nap time, so it's nice and peaceful in the living room. From our first session, it sounds like the immediate goal is to improve his neck strength. He still isn't really holding his head up for long periods. He tends to tilt his head back and kind of rest it on his shoulders and spine. So she showed me how to encourage him to "engage his neck muscles" and really use those muscles to support his head.
We also talked about getting Henry a new seat to use on the floor for playing. He sits in the Bumbo which gives him a chance to play sitting up, but it's also a pretty major workout for his trunk and neck. His therapist said it would be good for him to also have a chair where he doesn't have to work to sit and he can focus on learning to manipulate toys. He can do this in his high chair, but I had been thinking it would be nice to have something he could use in the living room and that we could bring to our friends' houses for him to use. So I went ahead and ordered him this chair, which is actually a feeding seat by The First Years brand. Though it's a feeding seat, he can use the tray for toys. It can sit right on the floor in our play area and it's small enough to be relatively portable.
That was not actually quick. Oh well! A-camping we will go! Gotta finish packing and load up the car! Camping post coming next week.... :)