Haylea also had an appointment today with an orthopedist to look at her feet. It actually went very well and I feel so much better about everything now. We didn’t really have to see the orthopedist but I just felt like I needed someone following her and maybe someone who could give us an answer as to WHY she has this problem. He was awesome and put my mind at ease so much. When he first came in Haylea was surprisingly in a good mood for and he made her laugh right away so that helped. He asked the normal “what brings you in today” so I told him that she was now 20 mo old and still not walking. I told him about the first steps evaluation and how they said she pronates and has low tone in her lower body and how we just got her orthotics a little less than 2 weeks ago. So he played with her feet and looked at her range of motion and had her stand, etc. He then told us that he in fact doesn’t think she has low tone at all because tone refers to muscle strength and he thinks her muscle strength is just fine. It is just that she is extremely flexible. She can still have her foot bent back to where her toes touch her shin bone, which is normal for an infant but not for a 20 month old! Same with her fingers and hips. She does sit in the W sit position a lot and you can take a leg and pull it out to the side and then stretch it out in front of her with no problem. So he thinks that the reason the orthotics weren’t a “magic” fix like I thought they would be is because her instability isn’t just in her feet but also her hips. She has had to pretty much re-learn how to stand with better alignment and I think just now we are back to where we left off before we got the orthotics as far as how much she will stand, and re-learning how to lift her legs to walk, etc. So now she feels stable when she is standing still but because her hips are also so flexible she is unstable lifting her legs to walk. Makes sense to me now that I think about it because she has been pulling up since she was 10 mo old (almost a YEAR ago!) and she definitely has muscle strength…try changing her diaper in the middle of a temper tantrum! He said he doesn’t see this being more than a temporary problem and once she does take off walking she should have no lasting effects of it, besides being very flexible. I was a very flexible child, my mom used to make me show every one my back bend where I could but my head between my toes…and even a bit further. I also roll my ankles all the time because they are so flexible. He also said it is more common for girls so Hannah might also have similar issues. But he stressed that he is confident it isn’t low tone. I mentioned my fear of a degenerative muscle disease or mild CP and he assured me that those things were highly unlikely because she has hit all other milestones on time and does have great fine motor skills. He also cleared up that while CP kids have a lot of flexibility until about the age of 2 when they actually start stiffening up, they are also very floppy (low tone). Haylea definitely isn’t floppy so that put my mind to ease about the whole low tone thing. He also said literally “Even if she does have a mild form of CP, the only thing that means for her since she has proven to hit all other milestones is that she doesn’t walk til she is 2. Big deal!” And he is right!
So all in all I feel much better. Much better knowing there is a reason she isn’t walking besides being stubborn like we originally thought but also knowing that most likely there is no underlying pathogenic cause other than just extreme flexibility and that she should have no lasting effects of this once she does learn to walk. He said give it another 4 months (till age 2) and if she isn’t walking by then we would look into it again but otherwise he doesn’t need to see her again. He thinks that once she learns to walk we will be able to wean her out of the orthotics and they are just a temporary need.
It is going to be a challenge with a newborn and with a toddler who is just learning more independence but I think this summer is going to be so much fun and a learning experience for us all!
