My husband and I were just watching videos from last Christmas. We were so amazed to see Luke last year, compared to how well he is doing today! He has come so far in one year!! I’m so thankful and blessed to have a beautiful, healthy boy 
In other good news, Luke’s Collagen VI test results came back normal!!! Yay, another test done and one less thing to worry about!!
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!
On top of everything that happened at Mommy & Me today, the teacher also went around the room to talk to all of us about school for next term. This is the second Mommy & Me class we have done. Luke technically should have gone into the “All By Myself” class this time, but he wasn’t allowed because he wasn’t walking. That was ok with me in the end, since I wasn’t comfortable leaving him alone to fend for himself. I am even more worried about that after today’s incident! Luke is already one of the oldest toddlers in our class. His teacher suggested that he do ANOTHER Mommy & Me session after this, then possibly do the All By Myself over the summer session, which would be 2 days a week from 9am-noon. Most of the other moms in the class seem to be stressing over this whole preschool thing and are registering their kids for the fall already!
It’s hard for any mom to leave their child alone for the first time, especially when they have any sort of “issue”. Everyone seems to be so concerned with getting their toddlers into “preschool” at the age of 2. I always thought that traditional preschool started at the age of 3?? I really don’t see what the big deal is, as long as they are learning things at home and being socialized through other classes, groups, storytime etc. Maybe I am just being my paranoid, neurotic self, but I think Luke will be ok if he isn’t in formal school until after his 3rd birthday. He will be starting Kindergarten before I know it, so shouldn’t he (and I) enjoy this time as a toddler? Not to mention, this school is fairly expensive. I would much rather spend the money doing other fun things and therapy options to make sure he is fully caught up by the time he does go to kindergarten, or even pre-k.
Am I making a mountain out of a mole hill here, or do I have a valid point?
I’ve been so happy the past couple weeks with everything new that Luke is doing. He is standing independently, taking steps, and getting into a standing position from the floor by himself! I have been really feeling like he is on the road to “normalcy” until today…
We had Mommy & Me class today and everything went well until around noon. We had just gotten done doing “Ring Around The Rosie” on the parachute, Luke was standing slightly behind me and all of the sudden, for no apparent reason, he fell over like a tree in the woods! Usually when he loses his balance while standing, he will bend his knees and fall with his hands down. Not this time. He fell flat backwards, onto the hard concrete floor that only has indoor/outdoor carpet covering it and smacked his head on the floor! Everyone heard him hit and gasped. It sounded like a bowling ball being dropped onto concrete. Luckily, it didn’t knock him out, but he was screaming and sobbing. He had a small, red spot on his head where he hit. The teacher gave us an ice pack, but he wanted nothing to do with it! She was more freaked out than I was and said that I shouldn’t let him fall asleep on the way home. I have to drive 30 minutes, so I knew he would probably fall asleep! She suggested that I take him to his pediatrician, since he is only down the street from school.
I took Luke into the doctor’s office. He checked him out and didn’t see any signs of concussion or other injury. He said as long as he didn’t go unconscious, he should be ok, but to keep a close eye on him for 24 hours. He has been his normal self today, maybe a little crankier. I’m sure his head is sore, so I gave him a little Tylenol when we got home.
I know that all kids get bumps and bruises and eventually hit their head on things, but not like this. I wouldn’t have been as worried about the overall picture if he had just fallen off of something, but he fell over for no reason. Luke still has some sort of issue with balance and depth perception. I don’t know if there is something being overlooked or if it’s just part of his developmental delays that will get better with time as he gets stronger and more coordinated.
I’m trying not to let today’s little setback get me down. Luke has been doing so well and has come so far in just the past few months:)
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)!!!:-)
My sister and her youngest daughter came to visit over the weekend. We spent the day walking around St. Augustine and being tourists. We were walking along George St. checking out the shops, when I overheard 2 moms chatting. They both had sons that were 15 months old. The one boy was walking along with his parents, while the other was in his stroller. I heard the mom with the boy in the stroller say “look, see that boy, that is what you are supposed to be doing”. The mom of the walking boy said that he started walking shortly after his 1st birthday. The non-walking boy mom said “well, he is just starting to walk, so he will get there”.
It’s amazing how much we moms compare our children to others. What is “normal” for one, may not be “normal” for another. I have definitely learned that children all do things in their own time. There sometimes isn’t an explanation for things. We would be so much better off if we could sit back and just enjoy these early years with our children and appreciate them for who they are. I know it’s hard not to worry and wonder. I still do it everyday!
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:)
