First Steps Review

Tonight, despite the tornado warnings and storms, we were able to hold Wade's IFSP review meeting (even if most of it was in the basement). We reviewed his goals made in February and discussed his progress since the last meeting. A few things were also updated as he is growing up and some of his routines have changed. 

A few things to be proud of:

• Wade has completely closed the gap with physical therapy and he's right on target for physical development for a 20 month old. Therefore, he has been discharged from PT (we will definitely miss his therapists, but luckily we're all neighbors!). Although he should continue to work on jumping and throwing/catching/kicking ball skills, there is no need for PT anymore.
• Of the 12 goals that were set in February, Wade accomplished 9 of them within 7 months! That’s 75% accomplished and let me tell you--his mommy and daddy are so proud!!

What to keep working on:

• He will continue to receive speech therapy and occupational therapy once a week. We will also keep our nutritionist consultations for advice/weight checks.
• His speech goal is to say more sounds/words and continuing to sign for communication.
• His feeding goal is to be completely weaned off the bottle by the time the baby comes (January). He eats solid foods and drinks juice from a sippy cup just fine, but still wants the bottle while being held for comfort. I haven’t been very firm in weaning him because I know how important it is for him to consume those calories. However, it’s time for him to be off the bottle!
• His OT goal is to strengthen core muscles, shoulder girdle, and fine motor skills, including the pincer grasp. OT will also help encourage the PT skills that he should continue working on (jumping and ball skills).

Kicking it Up a Notch

With the help of therapy, Wade is pretty much amazing for improving his skills in walking (even walking backwards) and squatting. He has also started to show more interest in half-tall kneeling and he has even went back in his development to master crawling and tummy time (the correct way)!


However, he is still low tone (especially in his stomach) and could be walking with better alignment. So, in order to correct these problems, the First Steps Program has ordered some therapy tools to assist him.


First, to correct his alignment, they ordered shoe inserts to help stabilize his feet and prevent him from walking on the insides of his feet. They hide inside his normal tennis shoes and we didn't have to buy any special shoes! Wade is a champ with the inserts because he has never complained or lost his balance with them.


In addition to the shoe inserts, Wade also has TheraTogs that he wears for 30 minutes a day. The TheraTogs are a stretchy outfit that is worn tight to the body so that it increases body awareness and helps improve Wade's tone and posture. Unfortunately, Wade doesn't like the TheraTogs as much as his shoe inserts. He is very whiny when wearing them so I usually try to let him play outside so he isn't focused on the unpleasantness of wearing the TheraTogs.

W unhappy about wearing his TheraTogs.

Update on Recent Testing

Update on Liver Enzymes: 

Due to Wade's elevated liver enzymes, he had some blood work and urine tests collected to test for mitochondrial disease or any metabolic issues. (see this post). These tests all came back normal and the reason why his liver and pancreas looked the way it did in the ultrasound is because of SDS, not anything else. Thank God!

Update on Bone X-Ray:

The geneticist ordered a full-body bone x-ray since SDS patients typically have skeletal dysplasia (see this post). The results from the x-ray indicates what they would typically find with SDS patients. The geneticist did not find any additional concerns with Wade's bones. He just suggested continuing physical therapy to increase muscle tone.

Update on Parental Genetic Testing:

To confirm Wade's SDS genetic confirmation, they tested me and Adam (see this post).We're currently still awaiting these test results.
**4/26/2012 Update: The genetic test from me and Adam confirmed that each of us carry the SDS gene. Therefore, since we are both carriers, it is a 25% chance that other children we conceive would have SDS too.

Weekly CBC's:

As a way of figuring out the best dose for Wade's Neupogen, we do a CBC weekly--on Monday's. We originally had Wade on Neupogen MWF for about three weeks. Then his counts were too low on Monday, so we changed the dose so he would receive it M-F. After one week of M-F, they noticed that his ANC was still too low on Monday. So next they changed him to receive Neupogen daily (M-S). After one week of daily injections, his ANC count on Monday was 9,450! WOW! So, the Neupogen really does work but the hem/onc doctor said it doesn't need to be that high. So now we're back down to 5 days a week, but instead of skipping Saturday & Sunday, we're skipping Tuesdays and Fridays to keep his counts a little more balanced throughout the week.

Services for Little Guy

Yesterday was a 6-month review for Wade's IFSP (Individualized Family Service Plan) with Missouri First Steps. We all met at our house and I was surprised that everyone showed up! We discussed how Wade met his goals written in his previous plan and we updated the plan to include new goals, such as correcting alignment with walking/standing, saying simple words, using common signs, gaining strength in his core, eating a variety of foods, and keeping up with a high-calorie diet in order to grow. We increased services and added a new one, so now Wade has the following services:

• Speech Therapy--once a week for 60 minutes
• Occupational Therapy--once a week for 60 minutes
• Physical Therapy--once a week for 60 minutes
• Nutritional Consultation--once a week for 30 minutes

I'm going to be busy keeping up with all of his therapy appointments, but luckily the sessions take place in the home. 

Also, I called the intake coordinator today at the Sikeston Regional Office (Division of Developmental Disabilities) and Wade automatically can receive services because he's already in the First Steps Program. The Sikeston Regional Office sets me up with a caseworker to be able to find resources, fill out applications/paperwork for various services/programs, and get other services for Wade that First Steps doesn't offer. He'll receive this until he's five years old!