In case you don't know the story...we purchased this suit a year ago. When Kevin wore it the first time, the day before his ankle surgery, we saw him straighten his left foot when walking with the suit on - instead of turning it inward. The ankle surgery was not correcting this problem so we were very excited to have something to help. But unfortunately, we have had many difficulties with getting the suit to fit properly and with the control box. Kevin's arms and legs are so skinny that he was not getting proper contact with the 60 pads inside the suit that provide the electric stimulation. The original suit he had a year ago was size CL-140 for the jacket and pants. The suit we ended up fitting him for now is CL-140 for the jacket and CL-134 for the pants. One very helpful aspect of this visit was we were told which pads are activated for Kevin's individual program in the suit. So now we know which pads absolutely need to be touching his skin. Hence, the red sports wrap and custom made underwear. There are very important electrodes on his hip and bum that will not get through a diaper, so we use underwear with a pad and luckily the suit is washable. All parties involved (the company, me, & FHC) are determined to make it work so that Kevin's walking will improve and his left arm too.
We also saw the foot doctor while we were there, to have a check on his left foot. He basically wants to wait and see if the suit will help before making any other decisions, but he did say the flexibility looked good...which surprised me. Maybe credit for that is due to Dr. Nemeh and using the infrared light. Dr. Joe also helped us pick out a shoe size for Kevin. We came prepared with two shoe sizes for each foot (equalling 4 boxes of shoes) and were happily surprised to find that one size fits both feet with his orthotic inserts. WhooHoo only one pair of shoes...and we get to return the other 3 pairs.
Despite this being a quick trip to Philly it was not without a little drama. Jon wasn't feeling well the entire trip. Once we arrived at the hotel, I took Kevin outside for a stroller ride to stretch my body out after the 7 hour drive. Philadelphia is ahead of NEOhio and in full blown pollen season. Kevin was miserable afterwards. The next day while we were at FHC, getting the suit to fit, we took a video of Kevin walking before the suit was turned on and then afterwards. But after the suit was turned on, I ended up giving him another dose of allergy medicine and it made him drowsy - so his walking looked worse afterwards. So we will have to wait and see what the results look like at home. But we do know that the suit fits properly where it needs to and that the control box is working. He will wear it for an hour every other day while walking the custom made wooden walking track to keep his left foot on the straight and narrow. Speaking of the walking track, looks like I'll have to put it back inside before the pollen comes out at our house. Before we left FHC, Matthew even gave Kevin an allergy clearing for the pollen and other spring seasonal allergies. We will take video every couple weeks to keep a vigilant eye on his progress. We return to FHC in July.
If you have found this post and would like to read more about the suit, type in Mollii Suit in the white search box in the upper left corner of this blog. I gave much more information about the suit and it's function and how to contact the company in previous posts.
Could you please show us a photo where your son's hand support brace is more easily seen? We have tried various homemade supports and none works well yet.
ReplyDeleteDid you make it yourself, or did you buy it?
As for our son, he doesn't wear any underwear when in the Mollii suit, we just stick a fresh pad in everytime. :)
Hi Elvira! Type in "creeping with left arm brace" in the white search box at the top left of the blog page. I posted it in April of 2013 - I guess we've had it longer than a year. We went to a place that makes AFO's (do you know what that is?). They make a mold of the arm, it is a very quick process. Let me know if you need more pictures or information, I would be happy to help you. I am assuming that you are a FHC parent. Have I met you before? Thanks so much for the tip on the molli suit w the pad - I laughed when I read it bc it makes so much sense, I feel silly for not having thought of it. Of course cutting the underwear thing was Matthew's idea.
DeleteThank you! We might try to find a place that custom creates these braces. Yes, we are with Family Hope. Our son is 3 1/2 and his biggest issues are 3 hour seizures and Hemiplegic Cerebral Palsy affecting his left side, with some on the right side too, especially his foot. We have been on the program for 1 1/2 years.
DeleteI don't think we have met, but I have been following your blog for so long I almost feel like I know you :) Our next appointment at the FHC is in October.
Can you give me some info on what an allergy clearing session is like at the Family Hope Center?
Happy to meet you and so nice to hear that you have been following the blog. I do the blog mostly for me as therapy. And it is a nice way to keep family and friends (who want to know) up to date. And I am always thrilled to hear when someone else reads it.
DeleteThe allergy clearing can be an odd thing to witness if you have not had experience with any other forms of alternatives before - like muscle testing and such. I have never felt like it "cured" him of his allergies and could now eat eggs, nuts, etc but I do think it has helped him tolerate being around these things and possibly tolerate seasonal allergies better than not having it. I figure it can't hurt and no extra fee for it - so why not. The most difficult thing is not eating between clearings. Which is typically not even that big of a deal for our son while we are at FHC. And Matthew is pretty good about timing it so they get to eat again the next day. I think the first time we had it done with Matthew, and then got in the car to drive home afterwards, Kevin got sick in the car - a release of toxins, a good thing. And he was fine the rest of the trip. You could probably do a search for that on my blog and maybe find some stuff I've forgotten about. Let me know if you have any other questions. I'd be happy to answer them.