Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

Ok, I’m not trying to be a Debbie Downer or be ungrateful for all of the wonderful things that Luke has accomplished, but I still feel like there is an answer somewhere.

I have been very frustrated the past week or so with his constipation issues. I thought since he is now walking and much more active, the issues would get better. This doesn’t seem to be the case. I really don’t like the idea of using Miralax as a long-term fix for this either.

One of my friends suggested I look into a gluten-free diet. From what I had read about this in the past, I thought that a symptom was more along the lines of diarrhea, but now I am reading that in children, a symptom can be constipation.

I did a Google search for gluten+hypotonia and I came across another mommy’s blog: http://whattofeedyourkids.blogspot.com/. There was a post from March 2009 about Hypotonia and Gluten. I’m really starting to wonder now if this could be Luke’s problem too?

Our PT mentioned to me last week that she is seeing an increasing number of kids with hypotonia coming in for therapy. There has to be something going on that we and doctors aren’t recognizing, whether it’s environmental, diet etc.

If anyone else out there has any experience with hypotonia and gluten intolerance, please drop me a note!! I’m also curious to know how you go about ridding your entire house of wheat and other gluten products. Everything has wheat in it these days!! Maybe that is the problem!!

I have been working very hard to do my daily positive affirmations. I made it a point to say a bunch to myself in the shower this morning. It’s amazing how much better it makes me feel and how wonderful my days end up being from saying them!

It’s a beautiful day out today, chilly, but warm in the sunshine. Luke and I had lunch, then went out in the backyard to play for a bit in his sandbox. He has been taking more and more independent steps this week. Monday at PT he took 5 all by himself! I wanted to try and get him to walk in the grass (with his shoes and DAFOs) since it’s an uneven surface. He was standing pretty close to our fence when he heard a dog bark. He thought it was the neighbor’s little dog, so he wanted to walk over to the fence to try and look through. He took a total of 21 small steps to get there!!! It took him a bit and he lost his balance once, but he didn’t fall and he kept going! I was so proud, and I could tell that he was very proud of himself too!!

I think a lot of Luke’s issue with walking now is confidence. Since he knows that he can take a few steps by himself, he seems to be building on that to get further. Next week he will be running (my positive affirmation for him)!!!:-)

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:)

I spend the majority of my blog time talking about Luke’s hypotonia and the journey we have been on for the past year or so to get him caught up. He has come a long way since he started physical therapy in May of 2009. He had PT today at Brooks Rehab. He stood independently for a few minutes and even took a couple steps on his own! The therapist and I were very excited!

While we were in the waiting area waiting for our therapist, there was an older man and woman chatting. They were both in wheelchairs. The woman mentioned something about a stroke, but I’m not sure what happened to the man. They were comparing notes about different nursing homes in the area. The man said that he is 61 years old! He is younger than Luke’s grandpas! I know he has family because he was talking to me about Luke and mentioned that he had just seen his 4 year old grandson. It made me really sad!

No matter what we have going on in our lives, or how bad things seem, we are given our lives for a reason. We need to make the most of them while we can. Luke can’t walk right now, but there are plenty of adults who could walk as toddlers, but they can’t now. You never know what this life has in store for you.

Luke was given to me for many reasons. I accept him the way he is (this took a little while for me to do though) and continue to work along with him to give him the best life possible. That is what any parent does (or should do), no matter the circumstances. I am very lucky to have him in my life:)

We went for our second follow-up with the neurologist this week. I swear, their follow-ups are how they make a profit. We actually saw the neurologist this time instead of the nurse. He didn’t have any new information for us, of course.

The doctor told us that he wants to repeat the brain MRI in one year even though it came back “normal”. He said that Luke’s white matter isn’t as broad as it should be. He said this could be a “chicken or the egg” dilemma though. Since Luke’s gross motor skills aren’t where they should be for his age, his white matter is going to reflect that. I’m guessing that if you compared Luke’s MRI to one of a normally developing 9 or 10 month old, the white matter would be similar. I am really on the fence about repeating it for a few reasons. I don’t want Luke to have to go through the traumatic experience again. It was also disturbing to us as parents to see him scared, then 2 seconds later go completely limp from the anesthesia. Another thing to consider is the fact that we will have to pay out another $1000 deductible. I would definitely not think twice about paying out the money if I knew for certain that the procedure was critical for more answers. We are going to wait and see what happens. As long as Luke is continuing to make progress with his physical therapy, then we are going to hold off.

The neurologist also said there are a few other tests to perform that weren’t already done with the bloodwork that Luke had done while he was under. There are 2 blood tests that check for other kinds of dystrophies. They can also do a muscle biopsy to check for other genetic muscle conditions. There are no cures or treatments other than physical therapy for any of these outcomes. Again, we are going to wait another 6 months to do any additional blood tests or biopsies.

I also asked the doc if he had patients in the past with hypotonia who had all of the testing done, but found no cause. He said “yes”. Well, that doesn’t really make me want to do them either.

Does anyone out there have any experience with all of these crazy tests? I feel like my son is a pin cushion and a guinea pig! I just want to leave the poor boy alone for awhile and let him have fun. Maybe then he will feel more compelled to be “normal”!!!

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 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!!

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