Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

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)!!!:-)

We had a breakthrough yesterday during our in-home physical therapy. Luke has not been cooperating very well for the therapist, but she was playing with some of his blocks and he decided he wanted to play. He likes to take his toy tools and break apart his Mega Blocks. The PT had some of the blocks in her hand while Luke was standing. He would swing the toy tool (probably not the safest thing to do!) and break the blocks apart. She kept backing up and Luke eventually took 4 steps total!! He even fell forward, put his hands on the floor, then stood back up all by himself!! The therapist was so happy, but she didn’t dare cheer too loudly because she didn’t want to scare him and have him drop to the floor. Luke took a couple tiny steps 2 weeks ago at his other therapy, but these were true steps!!! Yay!!! I’m going to keep practicing with him using his blocks. I know once he feels confident with that, he will decide to take steps while doing other things:)

I spend the majority of my blog time talking about Luke’s hypotonia and the journey we have been on for the past year or so to get him caught up. He has come a long way since he started physical therapy in May of 2009. He had PT today at Brooks Rehab. He stood independently for a few minutes and even took a couple steps on his own! The therapist and I were very excited!

While we were in the waiting area waiting for our therapist, there was an older man and woman chatting. They were both in wheelchairs. The woman mentioned something about a stroke, but I’m not sure what happened to the man. They were comparing notes about different nursing homes in the area. The man said that he is 61 years old! He is younger than Luke’s grandpas! I know he has family because he was talking to me about Luke and mentioned that he had just seen his 4 year old grandson. It made me really sad!

No matter what we have going on in our lives, or how bad things seem, we are given our lives for a reason. We need to make the most of them while we can. Luke can’t walk right now, but there are plenty of adults who could walk as toddlers, but they can’t now. You never know what this life has in store for you.

Luke was given to me for many reasons. I accept him the way he is (this took a little while for me to do though) and continue to work along with him to give him the best life possible. That is what any parent does (or should do), no matter the circumstances. I am very lucky to have him in my life:)

Hello everyone! I was pleasantly surprised to find comments on here from some new readers:) Thank you so much for taking time to stop by and hear/read what I have to say. I replied to your comments on the comment section, so please check it out!

I apologize for the lack of content lately. I have so many things going on during the week and so many projects to do around the house, I’ve let my computer take a backseat for awhile. I guess that’s not necessarily a bad thing though! I do plan on getting back into the swing of things soon though, especially now that I know there are people out there in bloggy world reading mine:)

Not a whole lot new has been going on since the holidays. Santa brought Luke a lot of fun and therapeutic toys. I am hoping to post some pictures of them soon. We had a quiet New Years. I stayed up to watch the ball drop, then went to bed! I think my hubby stayed up for a little longer than me, but he wasn’t doing anything exciting. We are getting so old!!

Speaking of which, I also just turned 34 a few weeks ago. My hubby celebrated his birthday 5 days later. He turned 36, so he will always be the “old” one On a personal note, I am happy to be returning to my “Inner Journey” class. When we first moved here 3 years ago, I found this class that discusses looking inward and working on yourself. We talk a lot about spirituality and read some New Age-y type books. We read “The Secret” and “Divine Magic” by Doreen Virtue. I attended 3 terms before I had Luke. The class was mostly older women and one man:) They were all really sweet and even gave me a baby shower! I have kept in touch with a couple of the ladies as well as the teacher. She recently decided to offer a night class, so I am able to go again. I am so happy to be back in the class with like-minded people where we are free to speak our minds and opinions without feeling like we will be judged. The class changed my life and has made me a more positive person.

As far as Luke’s therapy goes, I am starting to feel like we have hit a plateau. He refuses to cooperate with our Early Steps PT when she comes now. She hasn’t really shown us anything new in the past few months. The PT we were seeing at the out-patient rehab quit a few months ago, so we have a new PT. I like her, but she doesn’t show us as many strengthening exercises. She basically just has Luke walk with a push toy and tries to get him to walk while holding onto one finger. I feel like we can do this at home (which we do everyday!) and save ourselves the $25 co-pay once a week. We are seeing another new girl this week, so maybe she will have some new techniques for us. I really think the DAFOs are helping Luke’s form and hopefully making him stronger since he is now working the muscles the correct way.

In pet news, my other cat, Smokey is sick. If it’s not one, it’s the other! He almost died 2 years ago from pneumonia. We managed to save him even though the vets told us if we brought him home, he would die. We are crazy pet people! We went so far as to create an oxygen tent for him and rent a tank to hook up to it. He started showing signs of pneumonia again, so I rushed him back to the vet yesterday. The xrays show fluid/puss etc and he has a mild case of it again. He is back on antibiotics and I’ve been “vaporizing” him in the bathroom once a day. He is nowhere near as sick as last time, thank God! We hopefully won’t have to recreate the tent!

Ok, I feel better now that I updated my blog!! It’s time for me to do some homework for my “Inner Journey” class. Goodnight to everyone in the blogosphere! Keep your wonderful comments coming. I feel like I have found a great purpose in life by sharing these experiences with you.

Hugs!!!

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.

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”!!!

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:)

Well, this week we are back to seeing our EI physical therapist. Our session today was cut short, so we only had one thing for “homework” this week. We saw the other PT on Monday, so I think Luke has put in some good workouts so far this week:)

I’m hoping we see more improvement now that we will be doing therapy twice a week with 2 different therapist. Each one has their strengths and they each have their own methods and “exercises”.

We are still waiting on the orthotic company to figure out when they will fit Luke for his braces. I guess the new PT has decided to get the higher ones to keep his knees from hyper-extending while he stands. I’m all for it if it’s the best thing to do. Now that cooler weather will be here, he can wear pants and no one will even be able to see the braces.

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.

I haven’t had the mental capacity to sit down and update my blog. I’ve had a migraine most of the week from dealing with the insurance company, Early Steps, therapists, and doctors.

I had originally planned to contact our Early Steps coordinator to find out when our therapist is coming back from maternity leave and to see if we could get some temporary therapy until then. I called her on Monday and she was to get back with me the next day. Luke and I went to our mommy & me class on Tuesday and I happened to overhear one of the other moms talking about her son getting physical therapy. I asked her if he was also going through Early Steps. She told me that they tried to go through Easter Seals, but their wait was too long. They ended up getting a referral for PT from their pediatrician and went to a local out patient rehab to get him PT twice a week. This got me thinking: “why isn’t Luke getting PT twice a week?”. Our coordinator mentioned asking our insurance company if any out patient rehab places were covered and we could then use them until our regular PT comes back. But, I got thinking about it and decided that our insurance company would probably cover an additional day, outside of dealing with Early Steps.

This is where the battle began. I talked to our insurance company three different times. They all informed me of the same thing, we could do any combination of therapy, up to $2500 per year. Right now, Early Steps does not get paid by our insurance because the PT is “out of network”. The charges are being applied to our deductible, but once that is met, the insurance co. will start paying Early Steps. If we decide to use another out patient PT that is “in network”, those charges would go toward the $2500. So, after many questions and a migraine, the insurance company basically said “Yes, you can do both as long as it doesn’t go over the $2500 maximum”. Sounds simple enough right??

Now enter the Early Steps coordinator. I told her of my new idea, that I want to do an additional day of therapy outside of them, through our insurance. She informed me that if we do that, they will no longer cover for us to use their PT. This didn’t make any sense to me, since our insurance claims it can be done. As long as everyone is getting paid the way they should, there shouldn’t be a problem, right? I thought the main goal here is to help children, not get wrapped up in red tape?!?!

So, where we are right now is to try an experiment of sorts. We went to an out patient rehab today for an evaluation and we will start therapy with them next week. We are also supposed to be seeing our other PT while she is still on maternity leave. We will be meeting her probably at her house though until mid October. We are going to let both places submit their claims to our insurance and wait and see what happens.

The kind of shocking part is, after discussing this with multiple people, we are apparently the first parents to ever do this. Maybe I’m being the pushy, neurotic mother, but I am just trying to get my son caught up to where he should be, especially after so many breaks in our therapy up until this point. My goal was to get him walking by his second birthday, but I don’t think that is going to happen now. I should have sought this alternative out sooner, but having never gone through this messed up process before, I just didn’t know any better. I assumed that the state was doing everything they could to help my son. No one, including the doctors we have seen, has ever said “oh, maybe you should try to squeeze in some extra therapy to give him that extra boost.”

I hope others will read this and maybe have a “eureka” moment and learn from our mistakes, journey etc.