Walking Updates!

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Posted by admin | Posted in hypotonia | Posted on 22-03-2010

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Sorry for the lack of updates. Luke and I have been staying very busy during the week with therapy, Mommy & Me class, and horseback riding.

He is doing great and is walking all over the house now!! His balance is still a bit off, but that will get better with time and practice. His ankles still pronate, but he no longer locks his knees. I asked about this last week at physical therapy. They have a new PT who is pretty experienced and she agreed with me that Luke’s current DAFOs are too much support for him now. He is walking pretty well barefoot and is able to get up on his tip toes. With his current braces, he is unable to flex his feet or ankles at all, so I think they slow him down a bit. They told me today that they are unable to hinge his current DAFOs, and he isn’t quite ready for just the ankle supports (AFOs), so he needs new DAFOs that have hinges. They will also be able to cut the height of them down once he is ready for just the ankle support.

This is great news, since Luke has only been in these DAFOs since the end of November. The bad part is, we have to fork out another $1000 for the new ones since we haven’t paid anything toward our insurance deductible yet this year. Ugh! I really hope Obama’s health care plan helps people like us out with these types of expenses! Of course, if Luke needs them, we will find a way to pay it off.

I will keep you all posted!

He Did It!

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Posted by admin | Posted in Mommyhood, hypotonia | Posted on 11-02-2010

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We had a breakthrough yesterday during our in-home physical therapy. Luke has not been cooperating very well for the therapist, but she was playing with some of his blocks and he decided he wanted to play. He likes to take his toy tools and break apart his Mega Blocks. The PT had some of the blocks in her hand while Luke was standing. He would swing the toy tool (probably not the safest thing to do!) and break the blocks apart. She kept backing up and Luke eventually took 4 steps total!! He even fell forward, put his hands on the floor, then stood back up all by himself!! The therapist was so happy, but she didn’t dare cheer too loudly because she didn’t want to scare him and have him drop to the floor. Luke took a couple tiny steps 2 weeks ago at his other therapy, but these were true steps!!! Yay!!! I’m going to keep practicing with him using his blocks. I know once he feels confident with that, he will decide to take steps while doing other things:)

Back To The Grind

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Posted by admin | Posted in Mommyhood, hypotonia | Posted on 14-10-2009

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Well, this week we are back to seeing our EI physical therapist. Our session today was cut short, so we only had one thing for “homework” this week. We saw the other PT on Monday, so I think Luke has put in some good workouts so far this week:)

I’m hoping we see more improvement now that we will be doing therapy twice a week with 2 different therapist. Each one has their strengths and they each have their own methods and “exercises”.

We are still waiting on the orthotic company to figure out when they will fit Luke for his braces. I guess the new PT has decided to get the higher ones to keep his knees from hyper-extending while he stands. I’m all for it if it’s the best thing to do. Now that cooler weather will be here, he can wear pants and no one will even be able to see the braces.

Physical Therapy Updates

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Posted by admin | Posted in Mommyhood, hypotonia | Posted on 25-09-2009

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I haven’t had the mental capacity to sit down and update my blog. I’ve had a migraine most of the week from dealing with the insurance company, Early Steps, therapists, and doctors.

I had originally planned to contact our Early Steps coordinator to find out when our therapist is coming back from maternity leave and to see if we could get some temporary therapy until then. I called her on Monday and she was to get back with me the next day. Luke and I went to our mommy & me class on Tuesday and I happened to overhear one of the other moms talking about her son getting physical therapy. I asked her if he was also going through Early Steps. She told me that they tried to go through Easter Seals, but their wait was too long. They ended up getting a referral for PT from their pediatrician and went to a local out patient rehab to get him PT twice a week. This got me thinking: “why isn’t Luke getting PT twice a week?”. Our coordinator mentioned asking our insurance company if any out patient rehab places were covered and we could then use them until our regular PT comes back. But, I got thinking about it and decided that our insurance company would probably cover an additional day, outside of dealing with Early Steps.

This is where the battle began. I talked to our insurance company three different times. They all informed me of the same thing, we could do any combination of therapy, up to $2500 per year. Right now, Early Steps does not get paid by our insurance because the PT is “out of network”. The charges are being applied to our deductible, but once that is met, the insurance co. will start paying Early Steps. If we decide to use another out patient PT that is “in network”, those charges would go toward the $2500. So, after many questions and a migraine, the insurance company basically said “Yes, you can do both as long as it doesn’t go over the $2500 maximum”. Sounds simple enough right??

Now enter the Early Steps coordinator. I told her of my new idea, that I want to do an additional day of therapy outside of them, through our insurance. She informed me that if we do that, they will no longer cover for us to use their PT. This didn’t make any sense to me, since our insurance claims it can be done. As long as everyone is getting paid the way they should, there shouldn’t be a problem, right? I thought the main goal here is to help children, not get wrapped up in red tape?!?!

So, where we are right now is to try an experiment of sorts. We went to an out patient rehab today for an evaluation and we will start therapy with them next week. We are also supposed to be seeing our other PT while she is still on maternity leave. We will be meeting her probably at her house though until mid October. We are going to let both places submit their claims to our insurance and wait and see what happens.

The kind of shocking part is, after discussing this with multiple people, we are apparently the first parents to ever do this. Maybe I’m being the pushy, neurotic mother, but I am just trying to get my son caught up to where he should be, especially after so many breaks in our therapy up until this point. My goal was to get him walking by his second birthday, but I don’t think that is going to happen now. I should have sought this alternative out sooner, but having never gone through this messed up process before, I just didn’t know any better. I assumed that the state was doing everything they could to help my son. No one, including the doctors we have seen, has ever said “oh, maybe you should try to squeeze in some extra therapy to give him that extra boost.”

I hope others will read this and maybe have a “eureka” moment and learn from our mistakes, journey etc.

Did I Have Hypotonia Too?

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Posted by admin | Posted in Mommyhood, hypotonia | Posted on 15-08-2009

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According to my mom, I was also a butt scooter like Luke. I never really crawled, but I started walking around 15 months, which is still considered late if you go by the book.

Our physical therapist mentioned one day that butt scooting is usually an indication that a person has low muscle tone. So, now I’m wondering if I maybe had it too, but not as bad as Luke. I have never been very athletic or had a lot of endurance. I managed to make it through basic training though:)

I’m just hopeful for Luke’s future. I hope that his hypotonia is something that he can overcome and eventually catch up to where he needs to be. It’s fine with me if he is never athletic, but I know this is something that would be more difficult for a boy to handle. He is already very smart, so I think he will be more studious than athletic anyway. Only time will tell us for sure.