Our life with a rare genetic disease

...they all are orthotics. I have to honestly say that I do not really understand those differences among them, but on the other hand it is not that important, we have to trust professionals that they know what they do. About 1.5 years ago we got our first orthotics, SureStep. They made a huge difference in T's life. Suddenly she felt "safe", and her balance improved by 100%. She got suddenly "wings", energy, motivation, she suddenly understood that she "is able to" ...next such huge improvement happened when she realised she can communicate by using signs, and that people understands her (about that later). She could walk only with support, but still, that look on her face ..."I can" ...it took about one year when the first pair became too small. Already towards the end they started to cause more and more problems, and were pressing too much, still, she got another pair of the same model. Only 2 months after that new decision was made an

Constipation seems to be closely related to hypotonia, i.e. low muscle tone. Many of you, with hypotonia kids, know, what I talk about. We are not an exception and we have been struggling with constipation from birth, basically, till now. We are almost 4 yrs old now. We had really hard days every now and then, stools were so superhard that I had to physically pull the stool out of that little girl. That screaming was just unbearable. We tried basic remedies like prunes (we usually drunk “prune juice”, i.e few prunes are put into a cup with water overnight), flax seeds, probiotics are still eaten on a daily basis, we tried also lactulose, in the worst case we used glycerine suppository. Actually, there were not too many choices, as we hardly ate and drunk something at the “baby” age (about that later on). And later on it did not really get better, even though we ate better, drunk more, were more active. So, nothing really helped in a long run, all was just “for a supershort while”. Just

Learn and/or practice sign language alphabet (ASL) with 8 initial sound cards.

... or this time in a therapy pool ;-) We are in the water almost weekly, and it took us two long years to realize we can use legs in the water! How cool is that! There is sooo much more fun by using also legs, not only hands! We use swimming also for fine motor activities, e.g. by collecting anything what we find from the water surface. Water, as an element, is a great therapy for anybody, not only for children with hypotonia or Bainbridge-Ropers syndrome, who just simple love water. The dark side of this nice hobby is that we get easily cold. We try to fight against it by using wetsuit. Most of the time we are successful. "Swimming" helped us very much in improving gross motor skills, and to get there where we are now = we are walking! It brought a lot of freedom to both, mom and little one.

Building according the model (photo: Minna Haapoja)   Stirring is good for your wrist! ;-) (photo: Minna Haapoja)

Just before Xmas, making own gingerbread Xmas tree ;-) (photo: Minna Haapoja) Building according the model (photo: Minna Haapoja) Stickers are one of our favourites (photo: Minna Haapoja)