Ben at Church

Last Sunday I decided to spend a little one-on-one time with Ben during church.

Ben has been using a gait trainer in physical therapy to encourage him to bear weight on his legs, and hopefully learn to walk one day. Our house, however, isn’t very gait-trainer-friendly since we have rugs everywhere. Our church meets at one of the local high schools and therefore has large expanses of smooth floors perfect for gait trainers. Our physical therapist therefore suggested taking it to church with us to see if it worked better there.

Ben did fairly well. He still doesn’t know how to propel himself forward, but definitely deliberately pushes himself backwards. He had a great time, though, and tolerated being in the gait trainer for about 20 minutes.

When he got tired, we went to the nursery and spent some time with the other babies. He had a blast playing with the toys there.

And after that, we just hung out, got his feed going, and waited for service to be done. He was just about ready for a nap by that time.

I didn’t hear a word of the church service, and honestly didn’t feel like I missed anything. Hopefully the Good Lord will forgive me.


Random Events from the Last Few Weeks…

I’ve forgotten how tired I get when I’m pregnant. By the end of the day, I am usually too tired to do much blogging. I tend to fall asleep on the couch around the time the boys get tucked in bed.

So although a lot has happened over the past few weeks, I haven’t blogged too much lately. Here’s some of the stuff I’ve neglected to put on the blog (in no particular order):

  • Isaac had his latest piano recital. He played a piece from his lesson book, and also “Plumm’s Minigame” from the “Legend of Zelda, Twilight Princess” video game. What a cool piano teacher he has to let him play video game music for the recital!

  • Jonny graduated from preschool! They had a neat little ceremony, and we had punch and cookies afterward. It was a little crowded since Jonny’s preschool class is big (over 30 kids), and there were parents, grandparents and siblings at the graduation. We are so proud of our big boy!

  • The big boys have decided they’re into Pokemon. Mark is not happy about this since he thinks Pokemon is nothing but a money-sucking device. I don’t mind so much since Pokemon seems to involve a lot of reading.

  • Since we had to retire Ben’s baby carrier, we found a new way to carry him around stores, etc: the umbrella stroller! Ben really enjoys it since he can see more of what’s going on. The big boys especially enjoy pushing him around in it, which can be a big help (or a hazard depending on the day!)

  • Ben has a brand-new Zevex Infinity feeding pump. This was supposed to be an upgrade from the Enteralite that we’ve had for a year and a half. There are a lot of things to like about the Infinity (it’s quiet, it’s smaller, it’s nicer), but there are a few things that we don’t like (the buttons are small and are all the SAME shade of blue. This makes it very hard to do any middle-of-the-night adjustments. Couldn’t they have at least put green and red LED’s on the “Stop” and “Go” buttons?) Ben of course doesn’t care, as long as he gets fed!

  • We’ve been grilling alot lately. The weather hasn’t always cooperated. Both yesterday and Sunday Mark had to dash outside to save our food from sudden downpours of rain!

  • Yesterday was our 13th wedding anniversary. Mark got me a Powerball lottery ticket for tomorrow’s drawing. I hope we win! I am so lucky to be married to my best friend.

Shopping for Plants and Flowers

We have had such a cold, damp and wet spring so far! We’ve only had a very few nice days since early April. This weekend, however, was gorgeous! The sun has been out, and it has been warm. Yesterday morning we went to our favorite greenhouse to get some plants to decorate our tiny yard.

Since this is the first nice weekend we’ve had in weeks, the place was packed! Mark, Ben and I had a great time, but the two big boys weren’t too keen. Ben was glad to be out in the fresh air and sunshine, and was very content in his stroller.

Isaac was worried about being stung by bees, and we did see a few since there were so many flowers. We explained that since he didn’t look or smell like a flower that he had nothing to worry about. He didn’t believe us.

Jonny just wanted to go home. In retrospect, I should have had him pack his little digital camera to keep him occupied. He was happiest when I lent him my camera to take pictures with. Here’s one that he took:

We bought some patio tomatoes, herbs, shrubs and flowers. Each big boy bought a flowering plant of his own. We stopped buying stuff when our cart (and our van) ran out of room.

We’ll have to return on Friday since I’d really like to buy some nice decorative outdoor pots. I love plant shopping!

Eye Checkup

Last week Ben had his semi-annual opthomology exam at our favorite tertiary care center. Six months ago he was diagnosed with strabismus, but at the time he was using both eyes equally. Since then, Ben has started to grasp toys with his good (left) hand, and things have changed. We’ve noticed that he had a tendency to hold toys really close to his left eye to see them better.

It turns out that he has now developed a preference for using the left eye, and is starting to ignore his right. This could potentially cause long-term problems with the development of binocular vision, since eventually his brain may eventually learn to disregard images from his right eye altogether.

So our friendly opthomologist has advised us to patch his preferred left eye for an hour each day to force him to keep using the right eye.

Today was the first day we tried it. Ben didn’t like it at all. He cried for a good 10 minutes and scrubbed at the patch in a vain attempt to remove it. He wouldn’t open the right eye at all for a long time. Jonny was upset at us too for torturing Ben, and demanded we take off the patch. Finally, I set Ben in his Exersaucer with some of his favorite toys, and he settled down after a few minutes. He then played with his toys quietly for about 45 minutes.

I suppose he’ll eventually get used to having the eye patch, and I hope this works. If it doesn’t, we may need to consider surgery, but we’d like to avoid that if at all possible.

Happy Mother’s Day!

I certainly had a very relaxing and enjoyable Mother’s Day.  First, I was awakened with breakfast in bed. Mark (with some help from the big boys) made me eggs, toast and fruit salad. Then we went to church, came home for a quick lunch, then we went to Circuit City. We bought this neat gadget:

The big boys think it’s theirs! LOL!

Then Mark made me roast beef tenderloin for dinner. He also made us two desserts: banana ice cream with chocolate swirl, and a strawberry almond cream tart. They were wonderful!!  If this new baby weighs 10 lbs it’s all his fault.

In other news, Ben and I have been on a few shopping trips without the big boys in the last couple of weekends. I have been trying out our new shopping cart seat cover, but unfortunately it is nowhere as good as Natalia’s cover at keeping him situated. He tends to lean over to the right, maybe because his little arm is on that side, and the back of this particular cover has nothing to keep him upright:

We’ll definitely have to try something else – maybe something like what Natalia has.

Two Year Well Child Visit

On Thursday we visited Ben’s pediatrician for his regularly scheduled checkup. Everyone but Isaac (who was at school) went along. Jonny was worried at first that Ben was going to have a shot, but was very relieved when we reassured him that Ben was done with shots for a while.

Ben weighs 16 lbs 2 oz, and is 27 inches tall. He has gained exactly 4 lbs over the last year. He is right at the 50th percentile for weight for baby boys with CdLS, and about the 25th for height. Our pediatrician was very pleased with his growth.  I am glad that he doesn’t expect the same rate of growth for Ben that he does for “typical” children.

We talked about development. Ben will always have global developmental delays, but he definitely makes slow but steady progress. He will now grasp and play with objects, roll end over end, and can sit unsupported for several minutes at a time (depending on his mood!) He coos, but doesn’t make a lot of consonant sounds. He has recently started to cry and fuss if one of his toys moves beyond his reach.

We talked about his Early Intervention services: right now he gets Physical therapy once a week, Occupational therapy twice a week (which includes feeding therapy), and Speech therapy twice monthly. We still continue to struggle with oral feeding. Sometimes he does GREAT, and opens his mouth up for the spoon (like he did for me tonight). At other times he resists any attempt to put anything edible in his mouth (like he did for his birthday cupcake). We just continue to work with him daily.

Ben is still virtually 100% tube fed.  Right now he is on mostly Nutren Junior formula, and gets a total of about 700 cc over a 24 hour period.  He seems to tolerate his feeds well, and we are just about to increase the volume of his overnight feeds a bit.  (We are maxxed out on how much he will tolerate in his daytime boluses).

We had a couple of new concerns:

  1. Ben needed a letter of medical necessity for a gait trainer of his very own (the one we have now is a loaner). Our pediatrician actually wrote one for us on the spot. Our PT will also write one, and hopefully we’ll get the ball rolling.
  2. We’ve noticed that Ben can ‘pop’ his right hip joint just for fun, and it doesn’t seem to hurt him at all. I can’t tell if the joint itself is unstable. Also, when supported, he walks with his feet pointed out, and his PT and OT thinks the external rotation of his feet is coming from his hips. So we’ll be getting X-rays of his hips to investigate.  At some point he may need to see an orthopedist.
  3. Ben has been horribly constipated for weeks! We’ve tried Karo syrup with very little success. It turns out, though, that we just started Ben on prune juice late last week, and it seems to work MUCH better than the Karo, so for now we’re holding off starting him on a prescription laxative.

We talked about appointments with other specialists.  There aren’t too many coming up in the near future.  We accidentally missed his appointment with audiology last week (oops!) and that got rescheduled for August.  He has an ophthomology appointment next week.  We haven’t needed to see Ben’s surgeons or the g-tube nurse in over a year.  We will probably make an appointment to touch base with Ben’s geneticist over the summer as well.

So things are going pretty well.  We are fortunate that Ben’s health continues to be very good overall.

Our next appointment for Ben at the pediatrician isn’t for 6 months.  Hopefully we won’t have a reason for him to be seen before then.