Getting fitted

Colin got fitted for his orthotics today. Unfortunately, the way the babies’ schedules work out right now, there is not a good time to schedule these appointments. We’re either running into nap time, having to cut someone’s nap short, or hitting lunch time. 

This morning, we were running into nap time, so someone (besides me) was a little crabby. Other than that, however, the process went well, and we were back in time to still get Colin down for a morning nap — which he really needed since I’m pretty sure he had been up more or less since 4:30 this morning.

We go in to pick up the orthotics (in jungle print with green straps) a week from Tuesday. They are relatively short — coming up just over the ankles — and are designed to help keep his feet from turning out or in, and his ankles upright. I imagine it will take a few days for Colin to get used to the feel of them (and the new shoes he’ll need to fit over them). Then we’ll be really pushing the walking practice, because I want to get this boy up and moving around (even more).

Babies first [interactive] Christmas

This is the babies first Christmas — well, at least it’s the first Christmas where they’ve been able to participate in the fun. Last year they were still teeny tiny little things and had no idea what was going on. We had a lot of debate about how to handle opening presents; because they still nap in the afternoon and go to bed early, Christmas Eve posed a problem (church was at 4:30, so that split our awake window down the middle). 

Fortunately (or not), both babies took monster naps yesterday morning, and decided not to sleep in the afternoon. This allowed us to open a couple of presents with them before church. We wanted to have them open the presents from Ethan first — he sewed pillows for both of them (pretty much all by himself) out of their favorite elephant fabric and we didn’t want the pillows (and their reactions) to get lost in the excitement.

Ethan was too excited about it, and pretty much ended up opening the gifts for them. But Veronica caught on to the concept of pulling the tissue paper out of the bag pretty quickly — and that’s where we lost her. Like most kids her age, the tissue paper and gift bags were WAY more exciting than anything else. Colin, however, took one look at the pillows and dove face first on to one, snuggling it and wiggling with glee. 

Roni got into the tissue paper.

Colin loved the pillow.

The other gift we let them open last night was a pop up “house” and crawling tunnel I bought for them earlier in the year from Ikea. Again, Veronica enjoyed the wrapping paper, but Colin took one look at the house, and crawled right in. Then, when I got the tunnel out of the package and expanded … well, let’s just say Colin was in little boy heaven. 

He eventually crawled out long enough to grab one of the pillows Ethan made and drag it into the house with him. Then he (and Ethan) crawled in and out of that tunnel for another 15 minutes. They would have kept going, too, if we hadn’t needed to leave for church.

Veronica was a little afraid of it whole thing at first. I’m sure Ethan thrashing around in there didn’t make it seem any safer. But at the end of our 15 minutes of fun, she finally ventured inside and discovered the joy of crawling through. And after church, even though both babies were so tired they probably could have fallen over and slept, the minute they saw the tunnel at the top of the stairs, they perked up and started to play again. 

Good purchase, Mom.

By this morning, when they opened their stockings and the rest of their presents, they had this whole gift-giving/opening thing figured out.

Music to my ears

Colin had his annual Early Intervention (EI) meeting yesterday, where all of his therapists — including those we don’t see — come over and discuss his progress and his needs. We have to do this once a year, as long as he receives services, to ensure his eligibility. 

I know from hearing other parents’ stories on some of the preemie support boards, that the EI system in Illinois is not the norm. It is far, far above the norm. And we are even more fortunate, I am sure, to be living in the city where there are many therapists in practice. For us, EI has been such a blessing. Colin has made so much progress in the past year plus, thanks to the therapy he gets. And having the therapy take place at our house makes it possible for us to continue. Because, honestly, I don’t think we could have managed twice-weekly sessions if we had to go somewhere for them.

Before this annual meeting, Colin is assessed by speech, developmental, physical and occupational therapists (and a nutritionist, this year, per our request). Then everyone comes over and discusses their findings and we decide what services Colin needs for the coming year and set goals for his development. There really aren’t any surprises at these meetings; the therapists all tell me after their assessment what they’re going to recommend. But it is interesting to hear from everyone together about how Colin is doing. 

(Because Veronica has “graduated” from therapy and is pretty much caught up with her actual age in all areas, she doesn’t need/qualify for EI services any more.)

I may be a bit biased, but I love any report about my child that starts off with the sentence, “Colin is a charming and handsome child …” All of the therapists agreed that Colin is on target or advanced in his social skills (which can be a real concern with preemies, especially those who had as many problems as Colin at the start). 

The developmental therapist was very encouraging — she only saw very minor delays from his actual age, all related to his delays in gross motor skills. She said she is quite certain that by 24 months, he’ll be functioning (developmentally) completely at his actual age. 

(They stop adjusting preemies’ ages at 24 months, but that doesn’t necessarily mean they’re caught up. In fact, many still lag behind their peers for years. It’s just less noticeable because you’re looking at a full years’ span of ages when you’re talking about 2-year-olds, versus the 1-month span when you’re talking about 18-month-olds.)

Colin has “graduated” to only once a month occupational therapy. He has mainly caught up in his fine motor skills, except (again) in those areas related to his gross motor skill delays. (It’s all connected, much more than I would have expected.)

He will continue with weekly physical therapy, where he continues to show a three to four month delay in skills. But everyone (including John and I) are impressed with his progress. We know now for certain that it’s a matter of when, not if, for walking. (And he’s already climbing like a monkey, so no issues there.)

He is also about three months behind in speech, but we’re going to wait three months and do another assessment rather than start on therapy now. I feel, and everyone agreed, that as soon as he starts walking, the speech is going to catch up. He is making progress already on his own, and I’d rather let him focus on catching up on his gross motor skills. (I would feel very different if he weren’t saying anything, or adding new words and signs now.)

He also will get a monthly visit from a nutritionist to help assess his diet and provide suggestions to get him gaining weight. (Her report said that his diet is basically on target, but he needs an additional 50 to 100 calories a day to start gaining — an easy task to get in my diet, but much harder than it sounds in his.)

We have been so lucky with both babies. They have overcome so much, and really seem to have beaten the odds. Colin’s problems, while frustrating, are relatively minor (yes, even his lung disease is relatively minor compared to what he could be dealing with) and quite likely things he’ll outgrow. Veronica has caught up so quickly, and continues to thrive. And that, my friends, is the best Christmas present I think I will ever get.

Hearing: Checked

Colin had his [rescheduled] hearing test this morning. And this time we were prepared: John put the new referral in his wallet right away when he picked it up. 

Unfortunately, they only seem to schedule specialist appointments during nap times. We can only get in to see the pulmonologist during afternoon nap time. The audiology department only had appointments available during morning nap time. But at least this one started before nap, so Colin was still in a good mood. 

Apparently having an audiology appointment is like having a big party for Colin. They had fun toys, and it was a new place to explore, and the testing was kind of like games. John said he even did good with the parts where they had to look/put things into his ears.

The upshot of it all is, he passed — there is nothing going on that should be affecting his speech or hearing now. He did fail two tests, one on each ear. But those results were somewhat cancelled out by the other tests he passed on each ear. (It’s hard to do testing on such tiny little ears, so you have to expect you’ll get some conflicting results from time to time.) 

Colin does have some things in his ears that aren’t formed right, however. And that could, potentially, lead to problems down the road. Or not. They don’t know. So we will have to take him back again in six months for another test, just to make sure he hasn’t suffered from any hearing regression. But for now, he’s just fine. 

 

 

My little cutie boy, ready to roll.

[I] Let them eat cake

I have not done as well this time around at keeping the babies away from unhealthy foods. With Ethan, I was pretty strict (except for ice cream) until he turned 2. I don’t know whether it’s because they’re the “second” child[ren], because there are two of them, because I’m now too old and tired to care, or because we’re trying so hard to get Colin to gain weight. But basically, they’re getting more junk than Ethan did. (That’s not to say that they are eating an unhealthy diet — overall, they still eat very well.)

Ethan and I made cake pops today, finishing our first round before dinner. So, of course, we had to try them to make sure they’re gift-worthy. (If you get cake pops from Ethan for Christmas, please pretend you didn’t read this post.) And, of course, Colin and Veronica are old enough now to recognize a treat when they see one. And they wanted in on the action. 

Because I’m an old softie, I let them split a pop — which made them very happy (and messy) babies. To be honest, it’s fun to watch them enjoy treats like that — which is probably the real reason I let them have the goodies. 

Now I’ll just have to hope the sugar doesn’t affect their sleep too much. 

New shoose

Veronica is talking up a storm now, in her own baby way. And Colin can say several words quite clearly — if he feels like it. Veronica’s three favorite words, out of her dozens, are uh-oh, shoes and cheese. She often walks around the house saying “Shoose. Shoose.” as she searches for whichever pair she wants us to put on her. And she almost always wants to have a pair of “shoose” on. 

Both babies love playing with shoes. We keep theirs (current and too small) in a bamboo box by the front door. They can easily spend half an hour or more out there pulling the shoes (and hats and mittens) out of the box, trying to put them on, moving them around the room. To Colin, I think they’re just like blocks or any other toy: they’re fun to play with and easy for him to carry around.

Veronica, on the other hand, loves shoes because they’re shoes. She will pick out her own shoes (or fetch Colin’s for us if we ask), always getting a matched pair, based on what she wants to wear. (You should have seen her the one day we took her to Famous Footwear to get boots — baby girl was in heaven.)

On Friday, one of my co-workers brought in a present for Veronica — two new pairs of shoes. So after work, I gave her the box to open. (We’re not discriminating against Colin here, but the order for his orthotics should be arriving any day now, and we don’t want to get him new shoes until he can try them on with the orthotics.) 

Veronica very carefully opened the box (a little taste of Christmas coming), tore into the tissue paper, and happily exclaimed “Shoose!” Both she and Colin wanted to try them on right away (leading Ethan to proclaim that Colin looked silly in the shoes with the pretty flower bows), and spent the rest of the evening trading off who was wearing which pair. (Veronica seemed to prefer the purple shoes with the bows; Colin liked the green ones with the flowers.) It was very cute.