Foot Update

Here is a summary of Kevin's progress since the Hyprocure Surgery in April.

Week 4 - water therapy, began standing and walking in water

Week 5 - began wearing shoes and standing

Week 6 - began wearing the Mollii Suit

Week 7 - began taking steps

Week 8 - began initiating walking

Week 9 - lots more walking without holding on 

Week 12 - independently walking around the house and climbing steps

Week 14 - began walking 300 yards 3X day & belly crawling

I was working on our FHC Progress Report during the last week of July. This was just after we had begun belly crawling around the house and walking sessions outside with Kevin. His right foot looks really good but his left foot began getting worse with the increased walking.

We quickly began communicating our concerns regarding Kevin’s left foot to the foot doctor and FHC. His left foot is still turning in, he is not standing flat on it, and he is not putting his heel down when walking. Due to the fact that Kevin has left sided weakness from his in utero stroke, it makes it challenging to get control of that side of his body.

After our discussion with the foot doctor he brought to our attention that the ankle support looked good. We knew that the surgery would not correct his foot from turning in. He reminded us how Kevin’s ankle used to sprain when he walked any kind of distance. So this made us feel a little better that he had been walking with no sprains. He also said that Kevin’s arch looked good, pronation (walking on the inside of his foot) was better, better control, and his ankles are not collapsing.

The foot doctor also suggested that we communicate with the Mollii Suit people to see if there was anything they could do to help. We have had the Mollii Suit about 2 1/2 months. When he first wore the Mollii Suit, the day before his foot surgery, it did correct his foot from turning in and he also correctly walked with his arms down at his sides. It has been difficult to judge the changes we were seeing with the Mollii Suit when he began wearing it because after the surgery we were starting all over again with the walking. I did feel like at some point, we were seeing better walking from Kevin the day after wearing the Suit. But now the reality was his walking always looked bad and seemed to be quickly getting worse. 

It was then suggested to check to make sure the Mollii Suit was working properly. To my surprise it was not working. I could not feel any signals or stimulation when the suit was turned on. I will admit, I felt foolish, for not thinking to check this sooner. It seems that there is a technical problem with the control unit. I have no idea how long it has not been working. I was somewhat relieved to find out that this is a technical problem and we can expect to see progress once it is returned to us and working properly. But I feel frustrated because I have to wait for the control unit to ship to Sweden, get repaired, and then ship back to us. Despite having a few complications with the Mollii Suit, I am confident that we will continue to have success with it (his body and nervous system will respond again once it is fixed) and have been very pleased with the company addressing our concerns. 

In the meantime, we have dusted off the walking track. The new plan right now is, to walk, walk, walk in the track and of course belly crawl, crawl, crawl on the floor. The good news is that we are able to use the walking track on the front porch. So we get the pleasure of walking outside but never actually leave the porch. Kevin loves to see what is going on in the neighborhood, watch our neighbors come and go, watch the dog walkers, and he is always on the look out for a big truck to drive down the street.

So until the Mollii control unit is repaired and returned to us we shall "walk the plank" and hope to see some improvement in his walking. I believe we need both the results from the Hyprocure surgery and the Mollii Suit before he can begin walking some distance on his own. Hopefully this will happen before the snow starts.