Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

Sorry for the lack of updates. Luke and I have been staying very busy during the week with therapy, Mommy & Me class, and horseback riding.

He is doing great and is walking all over the house now!! His balance is still a bit off, but that will get better with time and practice. His ankles still pronate, but he no longer locks his knees. I asked about this last week at physical therapy. They have a new PT who is pretty experienced and she agreed with me that Luke’s current DAFOs are too much support for him now. He is walking pretty well barefoot and is able to get up on his tip toes. With his current braces, he is unable to flex his feet or ankles at all, so I think they slow him down a bit. They told me today that they are unable to hinge his current DAFOs, and he isn’t quite ready for just the ankle supports (AFOs), so he needs new DAFOs that have hinges. They will also be able to cut the height of them down once he is ready for just the ankle support.

This is great news, since Luke has only been in these DAFOs since the end of November. The bad part is, we have to fork out another $1000 for the new ones since we haven’t paid anything toward our insurance deductible yet this year. Ugh! I really hope Obama’s health care plan helps people like us out with these types of expenses! Of course, if Luke needs them, we will find a way to pay it off.

I will keep you all posted!

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)!!!:-)

Luke is doing so well with his DAFOs. I think they are helping him get some strength in the correct muscles already. Luke will now do some “finger walking” with us, which is so exciting! Today, I got his braces and sneakers on him and we walked out into the backyard. I had him walk through the grass to his little slide. He wanted to keep walking and said “gate”, so we walked around the house, to the gate on the front of the fence. We walked out into the front yard, then he said “mail”. He wanted to go check the mailbox:) Once we got there, he tried to keep walking down the street!! This boy was unstoppable today! I redirected him back towards the yard so we could go back through the gate and into the backyard. We were outside for a good 20 minutes walking around. He is still a little slow and his balance isn’t quite where it should be, but I’m so excited that he will walk with us now! He wasn’t able to do that just a couple weeks ago.

Luke is now also able to walk while holding onto two of his push toys that he got last year. Daddy modified the Little People push/ride-on firetruck since the handle was way too short for Luke. He added some PVC pipe to make a taller handle and zip tied a 5 lb weight to the bottom of it so Luke has more resistance when he is pushing it and he doesn’t fall down. He also has a wooden Melissa and Doug alligator push toy that he got last year that works great on the carpet. The handle on that one is also too short, so I think Daddy will try and modify that one too.

All and all, today was very satisfying for everyone:) I could tell that Luke was really excited and proud of himself for walking so far. He wanted to keep going and exploring. I’m hoping now that he knows how much is out there to see, he will keep working hard and be walking on his own in no time.

We had a good Thanksgiving lunch/dinner with my husband’s family. We all met up at a restaurant on the water that had a yummy buffet with every Thanksgiving dish imaginable. It was wonderful to sit and eat, then not have to worry about cleaning up. Luke got his DAFOs (braces) on Tuesday, so this outing was the first time he really got to test them out. We helped him walk around outside on the docks while he watched some birds. The braces really helped with support, but his knees are still hyper-extending

After dinner, we went back to hubby’s aunt’s house where Luke played on the wooden train and playset she has for her grandson. He was able to swing all by himself on the big boy swing:) I was really happy that he was able to hold on and stay stable by himself. He also got to open birthday presents from the family. He got a cute Gap outfit, Tonka truck, and a Leap Frog refrigerator toy.

Well, I was very disappointed by the lack of RSVPing for his party today. I never heard anything from two “friends” that I had invited. I attended the one friend’s son’s 1st and 2nd birthday parties, but they didn’t even have the courtesy to RSVP “no”. They only live about 3 miles from us too! In the end, the only people who showed up were: hubby’s mom and stepdad, his uncle, and one of my other friends with her hubby and 2 kids. It ended up to work out ok though. We weren’t overwhelmed with people in the house, and Luke had a couple friends to play with.

Luke’s party was Sesame Street themed. I had SS tablecloths, napkins, plates, banner, and 2 little “murals” that I found online. I also ordered a cute Sesame Street cake from our local grocery store bakery. Luke’s present from us was the Sesame Street playset that you can only get at Target. He also got a big bag of Mega Blocks from Grandma and Grandpa, 2 sets of jammies, a Thomas sweatshirt, a book, and the Thomas beginner train set from his great uncle, and a cute set of animal blocks from our friend. All in all, he made out pretty well!!!

I’ve learned a couple lessons from this year’s party. Next year, we will have the party a week before Thanksgiving and probably do a party with just friends. I was pretty let down by the rest of the family that didn’t show up, so they can come over on his actual birthday next year, or combine it with Thanksgiving.

Well, Hubby went back to work today. He had about 2 weeks off, which was nice for all of us. Luke really enjoyed having Daddy around. Now it’s back to working long hours and long days for Luke and me.

We spent two nights at a local resort on the beach. It is apparently off-season because we practically had the whole place to ourselves. There were only a few people at the pool. It was nice to feel like we were far away, but only a short drive from home if we needed to make a quick escape.

Luke and I went to his new physical therapy center today so he could get fitted for his DAFOs (braces). They decided to go for the more aggressive, higher braces to help keep him from hyperextending his knees while he is standing. He did great while they did the mold/casting!! I told him that we are making him some special shoes. He loves shoes, so I thought this would help. I hope he does ok wearing them once we get them back in a couple weeks. Luckily, it’s getting a little cooler here, so he can wear pants over them. I’m anxious to get him in the braces so they can help with his positioning and he can get stronger. It is scary though to have to put your child in any kind of brace. Hopefully, he will get stronger and stronger and we can eventually phase the braces out. I know that kids sometimes have to wear them for many years though. We also get to buy some new shoes that will fit over the braces:) I will post some pics of Luke wearing them in a few weeks.

We had to say goodbye to our physical therapist today. This is her last week at that facility. We will be seeing a new PT, but her schedule is booked up until the first week of December. Ugh, another setback. So, now we are back to PT once a week with our EI therapist until we can get in with the new PT at the rehab facility. When will things get easier???? I’m hoping and praying that these braces will help Luke get stronger and he will be walking in the next few months. I’m going to need physical therapy if I have to carry him for much longer.