Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

I took a very long break from my blog. Now that I have deleted out over 4000 Spam comments, I’m going to try and post something again every once in awhile. I apologize if there were true comments that got deleted, I just had no way of weeding them out. Please re-post your comments if I did delete them.

Luke is doing great! He is now in preschool 3 mornings per week. I get to go to the gym across the street while he is at school. It’s good for me to have some “quiet” time and get back into shape. It’s good for him to be with other “normal” kids his age too. I do have some concerns about some of the “bully” type boys in his class pushing him over etc, but this has been addressed with the school and teacher. Hopefully, he will stay safe in his class now and feel like he can keep up with everyone else.

Luke also graduated from his Early Intervention physical therapy since he turned 3 last week:) We are still supplementing with PT at the out patient rehab, but we have only been going once every 3 weeks to check in and have her track his progress. We are still working on running and jumping. Luke is getting faster and is very close to running though and I got him a small trampoline w/ a handle that he has been using to practice his jumping skills.

We also decided to go ahead with one more test through our neurologist. It was a blood test to check for Collagen 6. We had it done over a month ago, but still have not received any results. It’s a very specialized and expensive test that needed to be shipped out to the Mayo Clinic, so it will take awhile. I’m hoping and confident that it will be normal.

We also had a second opinion from another orthopedic surgeon about Luke’s ankles/feet still pronating. He said the same as the other doctor we saw months ago…”leave him alone”. It’s better for him to use all of the muscles in his feet and ankles, rather than bind them into braces. I’m relieved that we won’t have to spend $1900 on new braces!! He hasn’t worn his old DAFOs since April 2010. He had some simple inserts for awhile after that, but I didn’t notice much of an improvement.

I will try and keep things updated on here as the occur!! I hope everyone out in Bloggy World had a great Thanksgiving:)

Ok, I’m not trying to be a Debbie Downer or be ungrateful for all of the wonderful things that Luke has accomplished, but I still feel like there is an answer somewhere.

I have been very frustrated the past week or so with his constipation issues. I thought since he is now walking and much more active, the issues would get better. This doesn’t seem to be the case. I really don’t like the idea of using Miralax as a long-term fix for this either.

One of my friends suggested I look into a gluten-free diet. From what I had read about this in the past, I thought that a symptom was more along the lines of diarrhea, but now I am reading that in children, a symptom can be constipation.

I did a Google search for gluten+hypotonia and I came across another mommy’s blog: http://whattofeedyourkids.blogspot.com/. There was a post from March 2009 about Hypotonia and Gluten. I’m really starting to wonder now if this could be Luke’s problem too?

Our PT mentioned to me last week that she is seeing an increasing number of kids with hypotonia coming in for therapy. There has to be something going on that we and doctors aren’t recognizing, whether it’s environmental, diet etc.

If anyone else out there has any experience with hypotonia and gluten intolerance, please drop me a note!! I’m also curious to know how you go about ridding your entire house of wheat and other gluten products. Everything has wheat in it these days!! Maybe that is the problem!!

I am a firm believer that everything happens for a reason and we are in the place in our lives where we are meant to be at any given moment. I believe that Luke was given to me to teach me many things such as patience, strength, unconditional love, and tolerance. All of these are good things to be taught!

With all of the mixed emotions that I have been feeling over the past 2 years with Luke, I feel a calling of sorts. Luke’s issues aren’t really that bad, but we have still been through a lot trying to get things figured out. I have had many days of frustration, depression, anxiety, stress, anger at times, exhaustion, “why me”, etc…. I can only think that if I feel all of these things with Luke basically being a healthy, normal 2 year old, I can’t imagine how other parents with more challenging experiences feel on a daily basis!

I started looking around online for support groups in our community for parents of children with special needs. I couldn’t find anything within a 100 mile radius!! Of course, there are some groups available through some of the state programs and some other groups specific to children w/ Autism, but nothing for parents who just want to get together and share their experiences. All children with special needs are different and will have different outcomes, but as parents, we all go through similar emotions. I think it’s healthy to share these feelings with people who know what it’s like. It has been so hard for me to explain over and over, and over again to family about what is going on. They will never get it!! I get the feeling that some of them actually think it’s “in our heads”. I just don’t even talk about it anymore with them because I get so angry and I don’t want to be angry! I decided to start a local support group to reach out to other frustrated parents. Parents with children of any age and any type of need can join. Currently, I have 3 members including myself:-) I have begun to put the word out to other people I have met with children with needs and I also mentioned it today at physical therapy.

I sort of feel like maybe I have bitten off more than I can chew, even though we don’t have many members yet. I have never really been a leader or organizer of anything! I do think this is something I’m supposed to do however. I’m really hoping more parents join and we all get something good out of it:-)

I will keep everyone posted on my group’s numbers and how I’m holding up as the leader!

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)!!!:-)

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”!!!