Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

My sister and her youngest daughter came to visit over the weekend. We spent the day walking around St. Augustine and being tourists. We were walking along George St. checking out the shops, when I overheard 2 moms chatting. They both had sons that were 15 months old. The one boy was walking along with his parents, while the other was in his stroller. I heard the mom with the boy in the stroller say “look, see that boy, that is what you are supposed to be doing”. The mom of the walking boy said that he started walking shortly after his 1st birthday. The non-walking boy mom said “well, he is just starting to walk, so he will get there”.

It’s amazing how much we moms compare our children to others. What is “normal” for one, may not be “normal” for another. I have definitely learned that children all do things in their own time. There sometimes isn’t an explanation for things. We would be so much better off if we could sit back and just enjoy these early years with our children and appreciate them for who they are. I know it’s hard not to worry and wonder. I still do it everyday!

Supermoms out there, please let me in on some of your secrets!

I wrote an earlier post about “Supermoms” and how in the world they do it all. I am lucky to get the day-to-day things done around the house, usually while Luke is napping. I always seem to run out of time! I feel like I never really “finish” anything and never have enough time to do some things for myself, like work out, read a book, or update my blog.

There are some moms out there, a couple I’ve seen from the blogging world, others I am friends with, who seem to have all of their crap together and then some! Ladies, please share some tips with me. I don’t know how you do all the regular things in life plus keep your children occupied all day.

Maybe I should sleep less? I feel like I don’t get enough sleep as it is though. Luke usually takes about a 2 hour nap, which isn’t very long compared to some toddlers. I usually stay up until 11pm-12am getting the rest of my “chores” done, along with maybe sneaking in a television show that I DVR’d.

I’m determined to get my act together one of these days!

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.

Luke, Hubby and I went out for a family dinner last night at Ruby Tuesday’s. I was pleasantly surprised that they had semi-healthy food on the kid’s menu. I decided to order Luke the grilled chicken and broccoli. He had already decided what he wanted though.

Our server came and asked us what we would like to drink. Hubby got his usual Diet Coke and I got a sweet tea. Luke looked at the waiter and said “sweet tea”, which usually comes out like “swee sea”. I didn’t think the server would take him seriously, but sure enough, he brought Luke a small straw cup with sweet tea in it. Not the best thing for a toddler to drink with dinner!

The server then came back a few minutes later to take our dinner orders. I placed orders for Luke and myself, then Daddy did his. Luke looked up at the server and said “french fries”.

I guess it’s good to know that Luke can order his own food now, but he didn’t seem to make the healthiest choices:) Next time he’ll hopefully say “chicken and broccoli”.

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.

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:)

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:(

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.