Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

Well, Hubby went back to work today. He had about 2 weeks off, which was nice for all of us. Luke really enjoyed having Daddy around. Now it’s back to working long hours and long days for Luke and me.

We spent two nights at a local resort on the beach. It is apparently off-season because we practically had the whole place to ourselves. There were only a few people at the pool. It was nice to feel like we were far away, but only a short drive from home if we needed to make a quick escape.

Luke and I went to his new physical therapy center today so he could get fitted for his DAFOs (braces). They decided to go for the more aggressive, higher braces to help keep him from hyperextending his knees while he is standing. He did great while they did the mold/casting!! I told him that we are making him some special shoes. He loves shoes, so I thought this would help. I hope he does ok wearing them once we get them back in a couple weeks. Luckily, it’s getting a little cooler here, so he can wear pants over them. I’m anxious to get him in the braces so they can help with his positioning and he can get stronger. It is scary though to have to put your child in any kind of brace. Hopefully, he will get stronger and stronger and we can eventually phase the braces out. I know that kids sometimes have to wear them for many years though. We also get to buy some new shoes that will fit over the braces:) I will post some pics of Luke wearing them in a few weeks.

We had to say goodbye to our physical therapist today. This is her last week at that facility. We will be seeing a new PT, but her schedule is booked up until the first week of December. Ugh, another setback. So, now we are back to PT once a week with our EI therapist until we can get in with the new PT at the rehab facility. When will things get easier???? I’m hoping and praying that these braces will help Luke get stronger and he will be walking in the next few months. I’m going to need physical therapy if I have to carry him for much longer.

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.

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.

Luke’s physical therapy has been on hiatus for almost 6 weeks now. Our therapist had her baby and has been on maternity leave. Of course, she needs her leave to recover and spend time with her baby, I’m not faulting her for that. She did tell us before she went on leave though, that she was taking three weeks completely off, then she would have some patients come to her house for another 3 weeks. This hasn’t happened yet, which I don’t blame her for.

I am really blaming our early intervention group for not having their act together. They knew the PT was pregnant and would eventually have her baby. They don’t have a back-up therapist, since there is not another one in our area willing to go into the homes to do therapy. I would have gladly gone to a facility to get our therapy, but that option was never even presented to us by our coordinator. We haven’t even heard from our coordinator since we started therapy in May! It doesn’t seem like she is doing her job to me.

Luckily for us, Luke’s condition probably won’t suffer very much by not having the therapy all these weeks, especially since we have been working with him a lot on our own. It does make me a little angry for the other children though, who have worse conditions and will probably fall behind or regress to a certain degree.

I am grateful that our state does offer this program, free of charge, but it is frustrating to know that they apparently don’t care all that much for the children they are helping. Shouldn’t there have been some better planning involved???

I am seriously considering contacting our coordinator this week to voice my concerns. I know it’s probably too late, since our PT will be back soon, but the way E.I. handled this is just unacceptable! I’m just afraid that if I come across as bitchy, the coordinator will relay this back to our PT. I’m in no way trying to get her in trouble or make her come back to work before she is ready.

Every mom I know has read the What to Expect books, including myself. The pregnancy one was ok, although it did make me paranoid and worry about every little thing going wrong. The first year and toddler versions did nothing but make me worry, get angry & sad, and think I’m a horrible mother, or that my child is not “normal”. There is that dreaded word again! Any parent of a special needs child or a child with hypotonia should seriously burn these books!

I stopped reading the toddler version when my son was about 15 months old. That is around the time his pediatrician referred us to the neurologist and we self-referred to Early Intervention. Some of the behavioral issues still apply, but it’s not worth it for me to skim the book to find what I need because my eyes always drift to the “your child should be able to..” sections, then I’m upset all over again.

Maybe I should write a book for parents with kids with hypotonia??

One of the main reasons I wanted to start this blog is to share my experience with my son’s hypotonia, also known as low muscle tone.

He is a normal boy in every way except that he is 20 months old and is not yet walking. He can stand along tables etc when he wants to get at something. He just starting getting into a sitting position on his own in June (from laying down), and he just started to crawl about 2 weeks ago. His primary form of transportation since December has been “butt scooting.”

Luke has been in physical therapy through early intervention since May of this year. He has progressed quite well. His therapist is happy that he met her 6 month goals in only 3 months!

He has also been through various tests to rule out causes for the hypotonia. He has had an MRI done of the brain and lower spine, both were normal. He also had extensive bloodwork done to rule out metabolic disorders and genetic conditions. The only thing that showed up was a vitamin B12 deficiency, which may or may not cause hypotonia. He is taking a B12 supplement just in case. A trip to the orthopedic surgeon also ruled out anything wrong w/ his legs or hips. They did a hip xray to be certain.

I guess our only “diagnosis” from a doctor is hypotonia which really isn’t a diagnosis at all. My diagnosis is a subborn boy who will do things in his own time, no matter how frustrating it is for all involved:)

Phew!!! Ok, now that I’ve filled everyone one in on Luke’s medical background, it’s time to move on. He is still a normal (whatever that really means) toddler with the same issues etc. as others.