6.24.2012

medical issues...this time, Simon

I'm going to start this post from the beginning, back around Simon's 2nd birthday. Around that time, we noticed that Simon wasn't talking. There was babbling but he was only able to say a couple of words. There is a program called First Words that we had heard about that helps children develop speech. We signed Simon up soon after his 2nd birthday. We were told that it takes over a year to be seen by an actual doctor through this program. In the meantime, you are invited to a couple playgroups where you can speak to a dietician, occupational therapist, etc. and we had someone come to our house for one hour a week to help Simon with his speech.

A year and a half after this process started, we were finally seen by a pediatric something-or-other doctor (Pablo and I completely forget her title - UPDATE : she is a 'developmental pediatrician') at the local children's hospital - specifically the Ottawa Children's Treatment Centre (OCTC). The first of two appointments happened this past week. The doctor did an assessment of Simon's development. We were asked tons and tons of questions about Simon's development - mainly questions about his physical abilities because that is where we've noticed the most issues lately. Simon's speech has developed immensely over the last 6 months and that has become less and less of an issue.

What we have noticed is that Simon is not physically developed like most kids his age. For example, Simon can't jump - he can't get both feet off the ground. Simon has a hard time running and climbing stairs. He can run at a slow pace but he has a really clumsy run. Stairs often frustrate Simon and he still has to put both feet on every stair. Sometimes he'll ask to be carried up and down the stairs. After Simon started walking, we noticed that his feet pointed outwards and he had xrays of his hips (Oct '11) and they showed that his hips pointed outwards a bit. We were told that he will most likely outgrow this. Another thing we've noticed recently is that Simon has difficulties dressing himself. We've been trying to potty train Simon and it has been a HUGE challenge because Simon can't take his pants and underwear on and off by himself. He tries but doesn't seem to have the strength in his hands to do it.

We discussed all these physical issues at length with the doctor and she saw it firsthand when she asked Simon to take a lid off a marker and he tried hard but couldn't do it. She then asked him to copy her and draw a circle and he couldn't. You could see that Simon was trying to draw a circle but just couldn't execute it.

We expressed all of our concerns about Simon starting school (Junior Kindergarten) this September and the doctor confirmed that Simon would most likely not be potty trained by then and his physical issues are going to be a problem if he enters a regular JK class. The doctor said that Simon is underdeveloped in his fine motor skills and gross motor skills and needs to be seen by an occupational therapist. She also examined Simon's eyes and she noticed that Simon's right eye pointed more inward. She would like Simon to be seen by an ophthalmologist.

The doctor would like us to talk to Isabella's school and see if they have a program where Simon could get extra help going to the bathroom, dressing himself, and anything that involves strength. We have a meeting with the school Tuesday morning. If the school won't take Simon in September, the doctor would like us to put Simon in a preschool for a few mornings a week. We all agreed that Simon is socially and intellectually ready to be in some sort of school environment.

The doctor isn't done her assessment quite yet. We saw her for two hours and she wants another two hours with us and Simon. After that she'll have more a more definitive diagnosis of what is going on with Simon. She did say after our first session that there is nothing seriously wrong with Simon that we should be overly worried about. I was so relieved for a number of reasons. I am thrilled to finally have seen a doctor who confirmed that Simon has physical issues. Thrilled that there is nothing seriously wrong and that hopefully with time and therapy, Simon will improve. I hate knowing that Simon has these problems. That he struggles with the simplest of things like taking the lid off a marker.

We've been through so much with Pablo medically the last 2+ years and now it continues with Simon. To be honest, all this makes me really sad. I just want Simon to be okay.

15 comments:

  1. My daughter has developmental dyspraxia in addition to sensory issues and struggled for years (and still struggles) with gross motor skills and motor planning. OT helped her tremendously. It also helped us understand what was going on and parent her appropriately.
    www.designingaround.com

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  2. Julia, i'm so sorry that both you and Simon have to go through this. it's so hard to see our little ones go through hard times. just remember that all little ones develop at different paces. i think it's great news that there is nothing seriously wrong.
    sending you all blessings.
    Claudia

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  3. I've been reading your blog for a little while and I don't comment all that often (although I should because I really love reading!) but I just wanted to say that you guys are in my thoughts and prayers. I'm glad you're finally getting to see a doctor with Simon and hopefully put to rest the major worry and get whatever educational and therapeutic help he needs. Waiting for those appointments to finally arrive is hard! We've been through similar doctor's visits with our son and know some of what you're feeling. The OT and PT and Speech therapies have been a major help for us. I'm no expert but if there are any specific resources you're looking for, I'd love to help (although it sounds like you've got it all covered!)

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  4. My friend is having the same sort of problem with her 1 year old, she can't talk, she can't move around well, she's weak, but the doctors can't really tell her what's going on. It must be so frustrating! I hope Simon improves or that if he doesn't that he gets the help he needs at school. He sounds like a smart little boy to me, so hopefully he will take it all in his stride! But my thoughts are with you all, I hope it's all good news from now!

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  5. aww, I'm thinking of you. Hopefully these are things he will be able to overcome with time.

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  6. it is so sad if children suffer. we also had heavy times with emil. (be hug). I am happy that he is healthy again.
    I am in thoughts with you and wish health.

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  7. Your little man should come along in leaps and bounds with the right intervention, I'm not a doctor but it does sound like he has low muscle tone which can affect speech, fine and gross motor skill, makes things like gripping and writing difficult, but the OT will give you exercises to strengthen his grip. A couple we do with my son are to get him to use a little tongs to pick up balls of paper and put them in a bowl, really works his hand muscles squeezing the tongs, and to hide "surprises" in balls of play-doh, he uses both hands to work the play-doh off and loves finding Lego mini-figs etc inside, really good for his fine motor skills :-)

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  8. Oh sweetie, I'm sorry. It's so hard when it's your baby. And, if you're like me, you just want something that you can do NOW to fix it NOW. Unfortunately, things just take time. It sucks. I'm glad you're getting help--that's what we needed with Gabe and he's doing great now. I'm thinking of you all and sending big hugs.

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  9. Sounds like dyspraxia....he will be fine!

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  10. Our son (now 19) had some similar problems and OT helped so much. We did the same things as Thrifted Treasure plus bought any game/toy with small parts that required using fine motor skills. We found that the rookie chopsticks made games of "pick-up" fun. We also had one of those bouncy balls that he loved to hop around on and one without the handle just to sit on and work on balance. Since he loved animals, he also had bareback horseback riding lessons to help with upper body strength and muscle tone. We found that we needed to show him how to do things by moving his body for him. Just remember, this is not about his intelligence or his abilites, it is just that his body needs a little more training. Know that you have a caring community that is willing to help and support you!

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  11. KH - I'm wondering if dyspraxia is what Simon has. I'm really looking forward to him starting occupational therapy. Not sure when but I hope soon! Thanks for commenting!

    Thank you Claudia!

    Jodi Ann - thank you so much! It's been a really hard couple of years with both Pablo and Simon's medical issues. I was just so concentrated on Simon's speech for the last year that I put the physical issues on the backburner because they didn't seem as important as getting Simon's speech 'all fixed up'. I'm sure we're going to get all the help we need through OCTC but if not, I'll email you and see if you have any suggestions. Thanks again!

    Thank you Morgan! I'm sure with time and therapy, Simon's physical problems will improve like his speech did.

    Thanks Hollie and Emil!

    TT - thanks so much for those suggestions! We'll have to give them a try and I can see Simon having fun at the same time.

    Collette - I'm so glad that we finally got these appointments with the doctor and that we can be steered in the right direction on hoe to help Simon. Makes me feel a whole lot more confidant that he'll be able to overcome all this. Love ya.

    xSara - I'm really looking forward to getting a diagnosis from the doctor in the coming weeks.

    Tai - thanks so much for sharing! We recently bought a couple of those bouncy balls (with handles) and he has actually been getting better at bouncing on them. When he first started using them, he really couldn't bounce at all and now he can actually get his feet off the ground a bit. My parents also have a trampoline in their backyard and we've been practicing his jumping on that and we've noticed too that we have to move his body for him to get the feel of the motion. The horseback riding sounds very intriguing! I'm wondering how Simon would like that. Two of my cousins are into horseback riding so I'll definitely have to chat with them about that. Thanks so much for commenting!!!

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  12. I was going to suggest a trampoline! We had one, too. Just walking around on it helps with muscle tone. And the swimming is wonderful, it was a therapy we used. We just tried to make everything seem like a game/fun even though it was all helping our son! Hang in there!!!

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  13. Interesting about the horseback riding...a mommy friend of mine runs a place where children use horses for therapy. I don't know any details, but can ask if you'd like.

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  14. Tai - Simon loves to walk around in circles on the trampoline. It's so cute because to him, he thinks he's jumping. I'm so happy that Simon loves swimming so he's going to be doing alot of that this summer too. Thanks for all your advice!

    Jen - please ask for me and let me know what you find out. I'm very curious. I'll ask the doctor at our app't next week if she thinks that will help.

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  15. You are welcome, let me know if you have any questions!

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