Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

I was brave today and decided to get Luke some watercolors. He’s only ever done painting at our mommy & me class, but that was tempera paint. He did a pretty good job, but didn’t grasp the concept of having to dip the brush in the water, then into the paint. He was happy just dipping and swishing the brush in the water dish:) I think he did pretty well though and enjoyed it. We sat and painted together for almost an hour!! I may be really brave next time and get him some finger paints!

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.

I grew up in a very small town up north. I think the population at the time was well under 1000. Everyone knew everyone else, which was good and bad. Halloween was always a fun holiday for us as kids. My family lived outside of town, but we would go to our grandparent’s house in the village and do our trick or treating from there. It was such a safe neighborhood, I don’t even remember our parents going with us. It was always my two older sisters, me and a few of our friends and schoolmates. We knew which homes gave out the good treats, which ones gave out the gross treats, and the creepy ones to stay away from (they were usually the old, grumpy people who refused to give out candy). There was even one house that went all out and invited everyone inside where they had the whole house decorated with all things spooky.

What I described above almost sounds like something I would now see on “Leave it to Beaver”. This was only 25-30 years ago, but it seems like a lifetime. My hubby, son and I now live in a medium-sized city. This is our third Halloween in this house. Our first year here, we had maybe 10 groups of trick or treaters. I had plenty of candy, but not so much leftover that I ended up gaining 10 pounds! Last year, Luke was 11 months old. I thought it would be so cute to dress him up and hand out candy. I made up a bunch of little treat bags and had him ready to go. We had ZERO trick or treaters show up!!!!! I was so disappointed and I ended up having to eat a bunch of candy. I think I just threw out the remaining few pieces probably 2 months ago:) This year, we decided to not even bother buying candy and we kept our front lights off (we’ve become the old, grumpy people!).

I left the house tonight around 6:30pm to pick up some dinner. I saw one family out and about with their two children. They must be new to the city, because no one apparently trick or treats here. I also saw a few homes with signs on the front door. I couldn’t read them from the street, but I’m assuming they declared that they had no candy to give out. I felt very sad on my way home. How could things have changed so much in such a short time? Is our neighborhood really that bad? I think people are afraid to go out to their own neighbor’s homes anymore because of all of the foreclosures and the increasing crime rate. Most of the local parents I know don’t take their children trick or treating. They do something called a “trunk or treat”, which I had never heard of until last year. For those of you who have never heard of it either, it’s basically a bunch of people parking in the church (or other “safe” location) parking lots, giving out candy from their trunks. I’m still not sure how it works. I don’t know if we were to go and take Luke, if that means we have to give out candy also?

We decided just to stay in this year since Luke isn’t even two yet and doesn’t really need candy. I know a few of my friends thought it was just awful that we weren’t doing anything. We attended two Halloween parties. I think that was enough for Luke this year. We will venture out next year and see what all of the fuss is about. Hopefully we all come home alive:)

What is Halloween like where you live? I’m curious to know if it is like this everywhere now? It seemed “normal” in the neighborhood where we lived in North Carolina before moving here. The neighborhood kids actually went to the homes in the neighborhood.

Happy Halloween!!!

Luke looking at the gorilla. He tried to call him a monkey:)

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”!!!

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!

Today we went to a local fall festival. It was a beautiful day, maybe around 70 degrees. I was so excited to take Luke (& Daddy) to the festival. I don’t think I ever went to one as a kid and I was very excited for the hay ride and pumpkin patch.

I’ve come to the conclusion that I build things up in my mind way too much, then get let down when things don’t meet my expectations. Don’t get me wrong, the festival was nice, just not what I was picturing in my head. I guess I’ve seen one too many Norman Rockwell paintings in my life, which is funny, because Rockwell painted images from his mind, not his experience with real life.

The festival was very crowded with lots of activities for the older kids. We made a quick stop at the pumpkin patch for a photo opportunity only. People were completely oblivious that we were taking photos, so they felt the need to reach in where Luke was sitting and take a pumpkin. We got a few cute shots and decided to hit the hay ride on our way out.

The hay ride consisted of a tractor pulling a flat bed with bales of hay around the sides for people to sit on. I’m not so sure that they were secured to the trailer, but decided to go anyway. Luckily, one of the loading/unloading points was very close to where we had parked our car. Daddy decided he would run the stroller back to the car while Luke and I boarded the “wagon”. We told the guy that he would be right back, but he didn’t care, they started to pull away anyway. I yelled to the guy running it “he was coming too!!”. He just looked at me and said “oh, he can meet you on the other side”. Whatever……I called Daddy on his cell and told him he was on his own. To make things worse, we got to the other stopping point and everyone but Luke and I got off. A new group of people got on and were mad that I didn’t get off. I had to explain to them that we had boarded on the other end where our car was. Come on people, the ride is free for God’s sake, it’s not like I’m trying to get away with something here!! Then, an 8 year old boy who weighed about 200 pounds stepped on my foot (I was wearing sandals!).

Needless to say, by the time we finally got back around to where Daddy had been abandoned, I was ready to leave. I felt so awful, because I was looking forward to spending a fun day with the family. I don’t think Luke knew that I was so disappointed because he seemed to have a good time and that is all that really matters.

There was one amusing highlight to the afternoon. I saw a mom walking around who had the Kate Gosselin hairstyle!! All I could think to myself was “are you for real??”.

What can I do to relax, not get let down, or let other people bother me? This is something I have been working very hard on for the last few years. Some days I slip back into my Debbie Downer alter ego though.

It’s official, Hubby is on vacation until the end of October:-) He wasn’t able to take any time off until now, so he has about 2 weeks worth to burn up.

We had originally planned on heading up to North Carolina to visit our old friends. We would love to see them and hang out, especially in the fall, but we decided to do a “staycation” instead. Between having to get new tires for the car, gas money, and boarding our cats, it was just going to cost way too much. We live in a state where most families come on vacation anyway!

I have many activities planned for us to do as a family. Luke and I will also be busy with the usual “chores” like therapy days and mommy & me. I’m debating whether or not I dare give hubby a “honey-do” list also. Since he works so many long hours and hasn’t been able to take much time off, there are tons of things around the house that have been put off for well over a year. I try to do as much as I can, but it isn’t always easy with a toddler chasing you around everywhere.

We are supposed to have cooler weather starting this weekend. I’m hoping it sticks around so we can do lots of things outdoors without sweating profusely.

I will update with details on all of our family adventures:)