It’s been quite some time since our last update, over a year in fact! Maddie has made incredible strides in many different areas and we’re thrilled to share all the news.

Medical Stability: An Upward Trend

Medically, Maddie has been improving or at least maintaining stability over the past year. She even managed to take all the COVID shots and boosters with no side effects!

The latest regimen of steroids has successfully managed her seizures, and this has allowed us to take advantage of more physical therapy opportunities. Her heart repair continues to function excellently. At her last cardiologist appointment, a slight enlargement was noted on one side, but it’s well within the normal range and it’s managing all of her physical activities superbly. The pacemaker is also functioning well. She still has a few more years left on the battery before we’ll need to replace it.

Maddie lost a few baby teeth and some adult ones have started to grow in. Her dentist visits have become a tad more intense. However, she understands that the dental team is merely brushing or cleaning and doesn’t resist as much as she could. It requires a whole team at the dentist office to accomplish things quickly and safely.

Progressing Through Therapies: The Power of PT

With an extended period of seizure-free physical therapy, Maddie has made significant advancements. She’s not only able to sit on almost any surface with great stability, but she can also climb and roll on top of the sofas and ottomans we’ve placed around the living room.

She proudly pulled herself up onto the toy chest, rolled onto her back, and sat up. She’s surely proud of herself!

We installed a longer walking bar in the living room, and Maddie practices walking back and forth on it, often with her siblings joining in. To make her less dependent on the bar, we used a giant foam pillow that enables her to walk while leaning instead of holding onto the bar. This technique requires more stability from her legs.

Abby and Samuel joined Maddie in testing her new bar. We found that the extra weight actually wobbled the whole contraption, so we added another wooden bar in the middle (see above compared to below).

Samuel is always very supportive and tries his best to help his older sister. Here he is joining her in walking across a big pillow with very little support.

We acquired a new gait trainer. Maddie looked great in it during the fitting at the equipment center. However, once she got home, she figured out that she could use it like a hammock. After several weeks with no improvement, we modified her old gait trainer with a U-shaped bar that lets her lean and walk on it. Here’s the start of the project.

She adapted well to this leaning model, which eliminated the bottom seat, chest support, and handholds. She quickly realized that she couldn’t sit without falling, and there were no side or chest straps to lean on. Impressively, she’s able to walk for over an hour with breaks every ten minutes.

The initial version worked pretty well until we noticed that her trunk wasn’t straight. One successful technique was when Bill would hold Maddie and walk backward to encourage her to walk more upright. We observed she was holding onto Bill’s neck and shoulder quite well, as they were above her shoulder level, forcing her trunk to be straight and distributing her weight evenly between the two legs. With that in mind, we added PVC pipes to her walker instead of the U-bar to mimic two necks that she could hold onto as she walked. This exercise effectively transferred most of the weight from the front U-bar to her arms and legs, preventing her from sagging and leaning too hard on one side or another. Surprisingly, her weaker right arm has been handling the extra weight, and she’s been able to walk a couple of circles using this more challenging method before needing a short break.

But, she seems to be catching on to our tactics. She realizes that this walker is more challenging and, as soon as we put her in it and she feels the pipes, she plops onto the ground and expresses her discontent. Persuading her to go has been a challenge, but she’s a good sport and usually, after a few tries, she’ll start walking again.

During her breaks, our cat Moomoo comes to give her some encouraging snuggles.

In addition to the more intense gait training, Maddie still spends time in the stander each week. She’s able to play with more complex toys and purposefully turn dials, knobs, and selectors on her different toys to do what she wants. She’s shown a particular talent with piano-style toys that have many buttons and keys.

Our living room setup includes a toy chest, as mentioned before. She quickly orients herself after being placed in the middle of the living room and crawls towards the chest. Although the lid is too heavy for her to lift, she’s developed a solution to kick it off while on her back. Then, she gets up and rummages through the toys in the chest, choosing what she wants to play with and discarding uninteresting items. It’s extremely encouraging behavior for us!

Here she’s crawled under the small desk and is trying to figure out how to get out. As long as she’s not in danger of hurting herself, we usually let her explore and figure things out. Her memory is getting better and she knows to go back when she wants.

Cognitive Improvements: Signs of Development

Cognitively, Maddie has also made considerable progress in understanding what we want her to do and general communication. The positive aspect is that she understands when we tell her not to take her socks off or to stop spraying milk everywhere. The downside is that she has become more sensitive to certain sounds or things that she doesn’t like. For instance, whenever Samuel dumps a large amount of toys, there are sizzling noises from the kitchen, or anyone (however lightly) steps on or bumps into her, these usually trigger a bout of uncontrollable crying and tears. But we’re heartened by this more dramatic reaction because it shows development beyond just a fear of pain. She seems to be offended, or even outraged, by some of the triggers. In our minds, this means she’s able to express her likes and dislikes in a more complex way than before.

School at Home: Continuous Learning

Maddie continued her education at home this past year. A teacher came everyday to engage her with books, songs and other tools. All of her lessons are developed to incorporate her specific needs (e.g., when practicing counting, they use a light box to help with her visual impairment). We also have the support of vision, PT, and OT specialists from the school who advise us on home activities or other tasks we can incorporate. One of her biggest improvements is using a tech device to communicate her needs. She just graduated from a two button device (e.g., more vs all done) to an eight-button device. Although she’s not always consistent, she definitely has an opinion and we’re very slowly adding other words/phrases and hoping she’ll eventually learn to use them. Even though the normal school year recently ended, she’s able to continue with summer school. It just so happens that her school year teacher is also teaching summer school, so she’ll be able to continue working with her! We’re so thankful our local base school is a center for special education and has such an amazing program!

Family Time: The Joys of Togetherness

Maddie loves to go on walks and spend time in her various swings. Here are some photos from recent family walks where we’ve been enjoying the beautiful weather. Samuel is also very observant and tries to help when he can. He knows Maddie needs help finding her milk bottle, so he picks it up when she’s dropped it and puts it back in her mouth. Despite being the primary cause of her crying outbursts, he runs quickly to grab a tissue or towel to wipe her tears. And knowing that she is sometimes looking for toys, he fetches a chewy or another item to put in her mouth.

Bill spent some time in the garage, crafting a new bike trailer for Maddie. She can now enjoy feeling the breeze as we embark on longer rides after dinner. So far, the electric bike’s motor has held up nicely and Bill is curbing his urge to go really fast on the downhills.

We also noticed that Maddie really likes the swings at the school, so Bill copied the design of the special swings and we have one inside and one outside so she can enjoy swing time anywhere!

She had too much fun and feel asleep here.

But she still really likes the official ones at the school!

Both Jen and I are working at the same jobs as a couple of years ago, still from home. As always, we’re extremely grateful for Jen’s mom’s help with childcare for either of the younger kids as necessary. Bill’s business travel schedule has increased significantly over the last year, so having someone close by has been invaluable. But as Abby’s activities increase, we need assistance during some evenings and weekends. Hence, we’ve been actively seeking a part-time nanny to help with Maddie and provide her with therapies when we’re unable to.

One area we’ve grappled with this past year has been accessibility for Maddie. We have a stair lift going to the 2nd floor that we use daily (in fact, Samuel takes rides with Maddie and she now holds him while riding up or down). It was installed at the beginning of the pandemic and has been instrumental in transporting her.

Going outside or downstairs is another story. She adores her walks, but it was a laborious process getting her outside into her stroller. After much cleanup, we finally cleared enough space in the garage to install a full-size ramp. This has significantly facilitated getting her in and out of the house. We look forward to using it more and including her in more family activities!

Maddie is very excited to go on her walks and now she can get outside even easier!

*Probably not built to code, but it works for us!

All of her gait trainer and walking activities are in the basement because there’s more open area for her to walk a continuous line without interruption. This requires us to carry her up and down, and Bill has tried to manage this between his numerous daily Zoom meetings. We received a grant from Virginia state to partially fund another stairlift to be installed into the basement. However, we’ve had a hard time coordinating between insurance and the vendor, which has really delayed the timeline. Without the stairlift, we’re very concerned that a small slip could mean everyone goes tumbling down. Long-term, Maddie is now so large that we’re worried about potential injury to whoever’s carrying her.

Finally, here are some photos of Samuel helping Dad test all of the new items we’ve added for Maddie.

Another family photo during Jennifer’s birthday!