Yesterday was my half day so I was able to take Isaac to gymnastics and go to his soccer practice. Unfortunately, the beautiful sunny day we were having up to that point was rapidly changing into a thunderstorm. Soccer practice let out early, and Mark had to go to church for worship team practice. I decided to take the 3 boys to our local (very small) mall to buy them some sandals for the summertime.
We braved the weather and went to Payless and after trying on at least 10 pairs of sandals between them, we were successful in finding some for Jonny and Isaac. I saw some for Ben too, but although they were cute, they cost $11 and they wouldn’t stay on his feet, so I didn’t get them. We were a rowdy bunch, I suppose, because the saleslady asked us 3 or 4 times if we were finding what we needed! Jonny chose some very sensible sandals, but Isaac had his heart set on Spider Man light-up flip flops (for my Trini family, “flip flops” = glorified rubber slippers). He loves them although he can’t seem to walk very fast in them. He looks so cute trying to keep up with us wearing those silly things!
Today I went to work as usual, but the sore throat that I’ve been nursing for the last 3 days has been getting worse (maybe because I was out in the rain last evening). I had it checked out, and it turns out I have strep throat. And I shared my drink with Jonny and Isaac last night!!! And I am always kissing poor Ben! Let’s hope they don’t catch it. Now I’m on my amoxicillin and hopefully I’ll be back to normal in 24 to 48 hours…
This afternoon was Ben’s one year checkup. Jonny and Isaac were both there with us. We didn’t see our regular pediatrician, and I felt sorry for the doc who saw Ben because we had so many issues to discuss. Here’s a recap:
- Ben weighs 12 lbs 2 oz which is just under the 50th percentile for baby boys with CdLS, so his growth has stayed right on target. For his G-tube feeds we are switching him to big-boy formula now, and the Feeding Clinic suggested that we try Nutren Jr. instead of the Enfacare he currently gets. We’ll see how that transition goes for Ben.
- We are continuing to encourage oral feeds every day! He has been doing well with those so far. He especially seems to love sweet potatoes and oatmeal with bananas.
- We are enrolling Ben in the CdLS Research Study through the Children’s Hospital of Philadelphia, and we need to have records sent there and forms filled out.
- Developmentally, Ben is still delayed in all areas. He smiles and laughs, coos and has started babbling, reaches for and plays with toys but does not grasp things for long periods. He sits briefly if his hips are supported. He has started rolling from his tummy (if he is propped on his elbows) to his back. He makes good eye contact if you are right up close to his face.
- His hearing is stable and we will continue to follow up with audiology regularly.
- Ben’s 1 year evaluation for Early Intervention is coming up next month as well. We are hoping they will approve some speech therapy in addition to the physical and occupational therapy he already receives.
- And of course poor Ben had 3 vaccines (Pneumococcal, Hepatitis A and a combination Varicella/MMR). Isaac was very sad to see Ben get his shots and said, “I think doctors are evil because they make people hurt!”
So it was quite a busy visit. I’m a little sad when I think about just how far behind he is in his development compared to typical kids his age. But I am thankful for what he CAN do and never again will I take any developmental milestone for granted! Most of all I am grateful that he is healthy and happy and loved.