Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

We went to visit hubby’s friend over the weekend. They live about 90 miles from us and have 2 sons. I think they are 3 and 7 years old. They have more toys than I have ever seen under one roof before! Luke had a blast playing with them. It’s funny how he seems to enjoy playing with older kids and when he’s around kids his own age, he doesn’t want to interact very much. I think he likes learning from the older kids. He was doing a great job using their ride-on toys. He has one at home that he never really wants to use. I’m hoping one of these days he will see the kids walking and running around and he’ll just get up and do it:)

I discovered that our next door neighbors have a grandson with hypotonia. He is now in 6th grade and is “normal”. He never had a diagnosis either and I think they said he also walked late. I will have to get more details. This gives me more hope:)

Luke loves all things gadgety (like daddy). His latest is the digital camera. This is his self portrait.

Well, the nurse actually called me back later this afternoon. She didn’t even remember which test results they gave us before. I told her we were only waiting on the one chromosome test, which took her a minute to find. So, all of the tests have come back normal/negative. Yay!!!!!

Now we just continue on with the physical therapy. I guess we are one of those cases where a diagnosis/cause of the hypotonia is never found.

We are still waiting on a few of the genetic tests from our neurologists office. I called the nurses last week and left a message, but of course no one ever called me back. Today, I got a call from their office to change our second follow-up appointment. While I had the girl on the phone I asked about the tests. She put me on hold and another girl came on to tell me that 2 of the genetic tests came back negative. She had to put me on hold again to pull up the other test results from the hospital website. She came back and said that they were in, but a nurse had to call me back. I thought there was only one test left, according to the lab order sheet.

Now I’m freaking out because she couldn’t tell me what it said!!!! UGH! I’m so over dealing with doctors and their staff.

I still don’t understand why we are having a second follow-up appointment either. This time we will actually be graced with the neurologists presence. Our first follow-up was only with a nurse who told us exactly what she told us over the phone 3 days earlier. It was a waste of three hours total driving time! As long as all of the blood tests are fine, I’m tempted to tell them to take their follow-up to the follow-up and stick it where the sun don’t shine! I’m convinced that doctors and insurance companies are in cahoots and just want you to keep coming back so they can pay for their next vacation.

Public schools started here this week. It made me realize that we have 4 more years before Luke goes to kindergarten, and 4 years to figure out where we want him to go to school.

I’m not sure how the local schools are here since we’ve only lived here for a few years. I grew up in a very small town with no choices. You went to the only public school and that was that! Things were much simpler back then though (I sound old!). There weren’t as many scary things going on. My elementary classes were very small and everyone knew everyone else. The downside to that was that there weren’t many opportunities for us growing up. We lived in a little bubble.

I want Luke to have every opportunity I didn’t have. I’m not sure if that means I’m ok with sending him to a big public school, or if I need to pay out the butt to send him to a private school to make sure he is safe and gets a great education. I also hope that he is able to catch up to the other kids his age by then, so he doesn’t get picked on. See, more mommy worries to come!

Is it possible for a toddler to have OCD (obsessive-compulsive disorder)? My little guy is obsessed with toothbrushes and toothpaste. He loves our electric toothbrushes, so I thought it would be cute to get him one of the $5 toddler versions. BAD IDEA! If he saw the toothbrush, he would throw a fit until he got it. Then, if I tried to take it away, it was a worse meltdown. He does the same thing with toothpaste for some reason.

Luke is also obsessed with shoes and electronic gadgets. I guess he gets traits from both mommy and daddy:) I just don’t know how to deal with the meltdowns. Does anyone else out there have a toddler w/ OCD tendencies?

We went to a playground on Friday for a playdate. I really didn’t want to go for two reasons. For one, it was super hot and humid. Two, I have been avoiding playgrounds for the past few months. Going to a playground always results in a meltdown.

Luke can still only use the toddler swings. He will see the other kids playing on the other playground equipment and want to join in, but he can’t. If I put him down, he will scoot in the mulch/dirt to try and play. It’s sad because I know he really wants to play and he doesn’t understand why he can’t. Once he can at least stand on his own, he can do more, but for now we are not going back to the playground:(

If you would like to leave a comment on a post, please click the post title to go to the comment section. Someone just brought to my attention that there isn’t a comment link at the bottom of the posts. I will see if this can be fixed. Thanks:)

One of my friends who has a daughter with gross motor delays mentioned that she was going to check out something called Conductive Education. It’s another kind of therapy for kids with gross motor delays due to cerebral palsy and other neurological conditions.

I found a website about Conductive Education and there was a short video showing some of their students. It made me feel so sad and guilty at the same time. I have an otherwise healthy son, who has hypotonia with no apparent neurological cause. I feel bad for wishing he would just stand up and walk when some of these children will not only never walk, but they also have cognitive and other issues that are a lot harder to overcome.

I realized that as parents, we take our children for granted and forget that there are always others out there who may be in worse situations. I am so thankful for my son and I never want to take him for granted. I wish every parent could have that epiphany, but most do not unless they encounter a tough situation.

My heart goes out to the children with disabilities and to their parents who have to worry about their futures. I wish everyone could be helped and healed. Every child is a blessing and has a purpose for being here. Sometimes it’s hard to see through the clouds and see the sunshine, but it’s there everyday in their shining faces.