Luke had his first experience with horseback riding today. They aren’t a certified hippotherapy location, but he can do therapeutic riding. He cried the first couple times we put him up on the horse, but once he started walking, he loved it! They walked him around for about 30 minutes. We are hoping to go back again next weekend.
Luke so far this week has not wanted to cooperate with his physical therapists. I am almost to the point where I feel like it’s a waste of time for all of us. He is definitely acting like a two year old now!
I was very frustrated today after our therapist left. He doesn’t want to do much for her and we haven’t really been shown much to do with him that is new. I remembered reading about horseback riding as a form of physical therapy. It is called hippotherapy. I found two places that are certified to do it, but they are both about an hour and a half drive from our house. I thought that he could still benefit from ordinary horseback riding though. There is an agricultural museum semi close to us that does lessons. I’ve been meaning to make a trip out there to check the place out, but we haven’t gone yet. I called them today and set up an appointment for this weekend for Luke to try therapeutic riding. The instructor has a daughter with special needs, so she knows exactly where we are coming from. How refreshing for us! She said that the therapeutic riding that she can show him is more enjoyable for the kids whereas hippotherapy is more actual “work” for them and they don’t always enjoy it. She said she started her daughter with riding, then tried to switch her to hippotherapy and she hated it.
I’m hoping this new type of therapy will be a fun experience for all of us. Luke loves animals and it’s always nice to do something outdoors. He’s seen horses up close, but never been on one, so we will see how the first session goes:)
I’m also trying to find somewhere for him to do some aquatic type therapies. If I can’t find anything, I may just sign him up for swim lessons locally. That will be fun, useful and therapeutic.
I mentioned a couple posts ago that I started going back to my “Inner Journey” class. We are reading Louise Hay’s “You Can Heal Your Life”. I was amazed when I read her personal story where she said she remembered her parents divorcing when she was only 18 months old. Our instructor said that from a very young age, and even in utero, things are stored in our subconscious. There have been studies done on this where patients have been asked certain questions while under hypnosis. They later discovered things they said while under occurred while their mother was pregnant with them! I know, it’s far fetched and I’m not sure if I completely believe it myself. I do believe that we can remember things from when were are very young though, so maybe?
This got me thinking about Luke. While I was pregnant and going to class, all of the women kept saying how lucky my baby was for being in class and being “enlightened”. They said he would come into this world ahead of the spiritual game and would be a “yogi” of sorts. Oh, by the way, I should mention that Luke’s name means “bringer of light”. I mentioned this last week to my instructor and told her that maybe Luke is the way he is because of these In Utero Subliminal Messages. She thought it could be possible (of course!). He is very laid back and sweet, not to mention flexible like a yogi!
Who knows, maybe this isn’t a bunch of hocus pocus. Or maybe it’s just me trying to make sense of things and come up with an answer of my own. What do you think?
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!!!
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.
I’m hoping things look up for the rest of the week. Monday, Luke had his 2 year well visit with his pediatrician. He was supposed to get 3 vaccines, but I talked the doctor into only doing 2. He has been pretty flexible as far as the vaccine schedule is concerned. The rest of the appointment was the doctor basically lecturing me about how Luke is no longer a baby now that he is 2. He said that we have to start disciplining and taking away his “baby” things and habits. He also said that parents with children with “special needs” tend to baby their children longer and they end up not being productive members of society. I told him that it’s kind of hard for me, especially since 90% of the time, I have to carry Luke. I told him that I can’t just put him down in the middle of his parking lot and tell him to crawl or scoot into the building. It’s easy for a doctor to sit there and say these absurd things to a parent when they have never had to parent a child with “needs”. I hate using that term, because society automatically assumes that if you say your child has special needs, that they have some sort of mental or learning issue. Luke does not. If anything, I would be more inclined to say that he is handicapped at this point more than special needs. Ok, that was me going off on my tangent about special needs! The doctor just really rubbed me the wrong way with this whole discussion. I’m not sure if he was singling us out, or if he says the same thing to all first time parents of 2 year olds.
Today we had mommy & me class. There are only 2 more classes left in this session. The teacher gave us the registration information for the next session. All of the other kids will be able to move up to the “all by myself” class. That class is like an intro to preschool. The kids get to go for 2 hours by themselves, once a week. The teacher told us that Luke will not be able to go because he isn’t walking. There are 2 teachers doing the class with probably 7 other kids. I don’t see why one of them can’t assist Luke. I was told that we can re-do mommy and me again, but they moved it to Wednesday for the next session, which is the same day and time we do PT.
I’m just really frustrated because it seems like the world isn’t set up for children (or adults for that matter) who don’t fit inside the “normal” box. I don’t think it’s fair for Luke to be left behind. What if, God forbid, he isn’t walking in time for Kindergarten? Would he not be able to attend the “normal” classroom? It makes me so angry and sad at the same time to think that he is missing out on things. He is a very smart and happy boy otherwise.
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”!!!
Oh my God, Luke finally pulled to standing tonight!! I’m so happy and proud of him:) I bought one of those toy shelves with the bins today at Target (my fave store!). It came in a pretty big, rectangular box. Daddy turned it on its side and placed a toy on one side and had Luke try to get it. We thought that he would try to crawl over it, but he stood up!!! He even used his left foot first, which is his weaker side. We had him do it a few more times after that and he looked like a pro!
Luke has also been trying to pull up on me, then will pat my tummy and say “up”. I’ve been helping him stand up, but he did that tonight by himself too!! I feel like a small miracle has occurred. We have been waiting for this moment for over a year!! Most parents take these milestones for granted, but it is reason for celebration in our home:)
