Hi Everyone!

The last few months flew by and we have a lot of updates! With Maddie’s seizures still under control, she has made a lot of progress with her therapies. Virtual school has still been a challenge without all the physical interaction, but she’s still enjoying the classes and 1:1 time with her teacher. As we watched the events of the last two months, we are always grateful for our little oasis of peace where Maddie can continue to improve.

Maddie can now sit up quite well and we’ve graduated from regular stools and benches to a new wobble chair. She has to use quite a bit of effort balancing and has taken a few tumbles, but overall she’s doing extremely well with this new challenge.

Her arm strength has also improved quite a bit – she can easily remove her right arm out of almost any shirt/sweater and prefers having that arm uncovered. It’s a constant battle with her to keep that one sleeve on. Sometimes we have to deploy the distraction blanket. But alas, it is just a temporary fix…

Another area of motor function that has really improved has been her walking and bearing weight on the right side (her weaker side). With her height and weight increasing (as most 5 year old’s are prone to do), we’ve had a lot of issues getting her to walk more than a few laps around the kitchen. She was walking too fast and being discouraged when she had to wait for us to turn her around and go back the other way. So Bill did some research on existing gait/treadmill combos and came up with a contraption to put her gait trainer on top of a small treadmill we found on Amazon. It worked very well and Maddie is now walking regularly 20-30 mins on 0.5 MPH. There was a little hiccup when the piston holding up her seat failed, but a quick email to the manufacturer and they replaced it for free! What a blessing all this technology is!

This was her very first time using the set up, and already you can see her right foot was keeping pace with her left!

She is doing much better now with very forceful steps and straighter hips while she transitions from one leg to the other.

We can also see some improvement in her standing with just holding her hands. With her orthotics on (foot/ankle braces) she can now stand relatively straight while Bill hold her hands and is able to withstand some turning and jostling while “dancing” to music. The progress is very encouraging and is giving Bill more ideas on what other contraptions to research.

Another area we have been struggling with the past few month has been preventing injury to the adults when moving Maddie around. She has class 2-3 times a day, three meals, and a few snacks. Each requires us to carry her up one step from the living room therapy area to her chair in the kitchen. The small wheelchairs seemed kind of flimsy and some of the folding ones looked like potential pinching hazards. So again, Bill did some research and built (are you seeing a theme here?) a little cart/chair to use along with a small ramp that he purchased used a few years ago. We also added one to go from her room to the top of the stair lift. This has greatly decreased the repeated strains of lifting and holding Maddie.

Maddie’s right hand is also showing signs of improvement as she’s able to now open and individually curl the index and middle fingers. Here you can see when we caught her scratching the lines on the ramp (pool noodle for safety padding). She was opening those two fingers and curling them down individually to get maximum feedback from each bump. She did this repeatedly 6-7 times and made no effort to switch to her stronger (left) side.

Lastly, here are some pictures of Maddie enjoying all the different activities the last few months.

Jen is now 39 weeks and the little baby boy is due any day now. All check ups have gone well and we’ve done the required COVID testing to prep for a possible induction date next week. Please pray for him to come naturally, without induction/intervention, and for a safe, smooth delivery. There are so many things we do not know and we find comfort that God is in control and he is watching over us always.

We thank you for all your support through these past few months and ask for your continued prayers over the next few months.