Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

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.

It’s taken me forever just to sit down and try to update my blog. I’ll consolidate the week and weekend events into one post.

Tuesday we had our mommy & me class. Our Early Steps PT stopped by to see us. She wanted to see how Luke was playing and interacting w/ the other kids. He tries really hard to play on the toddler playground equipment and he likes to stand and “dance” to the music at the end of class. She was happy to see him in action:) I was a little confused though because she said this would be a “therapy session”, but she didn’t really do any therapy. She told me she has us back on the calendar for October 14th.

In the meantime, we are still pursuing the additional PT at the outpatient office. We had our first official therapy session on Friday. Our new PT there is pretty good. She showed me some things to do with Luke that were new. I think they will help strengthen his legs. She also put in the order for his ankle braces. We are waiting on the ortho company to call us to set something up. I think they will really make a big difference with the way he stands (see pic above).

Thursday we went to a local farm with the moms club. Luke loved all of the animals and was brave enough to try and feed one of the goats. We had fun, but I just wish he could have walked around with all of the other kids and interacted more with the animals. I will take him back and hopefully soon he can stand and feed the animals.

Our weekend was pretty boring. The only “family outing” we had was today to go to Lowes, then we had breakfast for dinner at Cracker Barrel. Well, Luke didn’t have breakfast, he had chicken and mashed potatoes. Daddy and I pigged out on breakfast yummies:)

We have a busy week ahead of us with mommy & me, therapy, storytime, and maybe a playdate.

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.

As I’ve mentioned on here before, Luke has pooping issues due to his hypotonia. He has been on Miralax for probably close to 8 or 9 months now. I started weaning him off of it about a month or so ago. I was down to only giving him one teaspoon a day and he was still pooping ok. I thought that maybe this would be the end of the Miralax and the end of the poop issues, but I was wrong.

The past couple of days, he has been withholding his poop again. I can tell by the way he puts his legs out straight and clenches to keep it from coming out. He had stopped doing that for quite some time. I’m not sure if he ate something that plugged him up, and he knows that it may hurt when it comes out, or if he’s just regressing for some other reason.

I’ve had to up his Miralax dosage once again. This process is so frustrating. There is no way I even want to attempt potty training until we get this issue cleared up (and hopefully he’ll be walking by then). I’m hoping that he will get “cleaned out” in the next day or two, then I can begin the weaning process all over again. Ugh!

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.

Luke and I started a new mommy & me-type class this week. It is a lot of fun so far. It is only once a week, but that is probably enough for us for now. It is a little bit of a drive, but worth it. It’s basically preschool with the moms present. This school has a very good reputation and apparently anyone who is anyone sends their children there. It is definitely reflected in the price, but you do get what you pay for. I don’t really care about being one of the “elite” or whatever, as long as we are having fun and Luke is learning new things.

They have a small toddler playground which I was worried about. I thought that Luke wouldn’t be able to play with the other kids (who of course are all walking). I was wrong though, the playground is really cute and he had a blast playing with the steering wheels on the platforms. Unlike our neighborhood park, this truly is a toddler playground, so I don’t have far to climb up with him or worry about how to get both of us down.

I’m glad we signed up for our new class. I hope we are able to make some new friends and continue on to their next program next term.

Luke and I had a playdate today with one of my friends who has a one year old daughter. My friend works full time but happens to have weekdays off sometimes. I can definitely tell the difference between us as mommies.
Since I am home all of the time with Luke, I think I take my time with him for granted. I also think I get more stressed out about things. This could also be from dealing with the issues we have. She seems to be more in the moment when she is home with her daughter and definitely less frazzled. I guess this could just be a difference in our personalities though too.

Like the saying goes “the grass is always greener on the other side”. My friend thinks I am so lucky to be able to stay at home all of the time, but I am kind of jealous of the moms who have a life outside of home. She runs her own business and gets to feel pride in herself and know that she is helping to support her family. I know staying at home is just as important, if not more than bringing in a paycheck, but I do feel like I am missing out on taking care of myself most days. I’m not sure if this is selfish or normal?

With Luke having his hypotonia issues, I would also feel guilty if I went to work full time. This would mean that someone else at a daycare or a babysitter would have to be responsible for his therapy appointments during the day. No one is going to pay as much attention as I would, so I’m sure the PT wouldn’t be as effective.

There is guilt either way as a mommy. I think we just need to somehow find a balance between our lives with our children and time for ourselves. If anyone knows how to do this, please let me know!!

http://www.zazzle.com/hypotonia_just_another_word_for_yoga_master_tshirt-235493483624367480

I just came across a blog that gives me more hope for Luke’s future:

http://uncalledforproductions.wordpress.com/2009/05/20/hypotonia-the-questions-ive-been-asked/#comment-32