Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

Luke loves laptops, just like his Daddy! Kneeling is one of his milestones that we were excited to see him do on his own:)

I started this blog to get out some of my emotions dealing with the daily struggles of having a child with hypotonia. I also hoped to reach other parents out there who may be going through similar situations.

How exciting is it that my blog has gone global already?!?! I have a new “blog friend” who lives in Australia and I just received an email from another mom in Canada. I’m so happy that moms are finding my blog. I hope they are finding some inspiration, hope, information, etc. while reading it.

Thanks to everyone who stops by! I hope to discover more moms from around the world. Parenting is a global topic that connects us all, especially mommies.

I weighed Luke today. He now weighs 30 pounds! This is definitely a downside to having a toddler with hypotonia who is not yet walking. He is getting heavier and I swear I am getting weaker. I’m not sure how much longer my back, arms etc can take it. I have to use the stroller pretty much everywhere we go because I can only carry him for a few minutes before I’m ready to collapse. Once Luke catches up and is stronger and walking, I’m going to make him carry me:)

I attempted to go to the gym this morning. As soon as I pulled in the parking lot in front of the gym, Luke started shaking his head and said “no, no, no”! I parked the car, went to get him out of his car seat and he tried to re-buckle himself in while still saying “no, no, no”. I knew that if I dragged him in there, a meltdown was certain. We ended up driving to a nearby park to go for a walk along the water. It was actually semi-pleasant with the breeze.

We have been struggling with the physical therapy since Luke’s therapist had her baby and is on maternity leave for awhile. He seems to cooperate better for daddy than for mommy. When he really wants something, he will move. We bribed him with his favorite oatmeal chocolate chip cookies on the coffee table tonight and he managed to kind of cruise along the table to get to them. He normally won’t do this. He also managed to try to undress himself and try to climb into the tub tonight. He threw his right leg up onto the side of the tub, which meant he was putting all of his weight on his weaker leg. He also stepped his legs out of his shorts for daddy and transferred weight from side to side. Any other time, he will refuse to do any of these things. I’m really not looking forward to the teenage years when stubbornness will be a much bigger problem!

I’m having a discouraging week so far. Luke is not in the mood to cooperate when it comes to doing his PT at home. He suddenly has little desire to stand. For some reason he seems to be stuck when it comes to pulling up to standing. His left leg stays bent under him while the right one seems to be stronger. I hope he is just being lazy these past few days and he catches back up later in the week.

We had a playdate yesterday at an indoor playground and it was sad to see him once again trying to do what the other kids were doing, then get frustrated. My one friend’s 3 year old son kept giving him hugs and kisses. It was very cute:)

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:)

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!

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:(