Physio update

I think we have finally figured out this "odd movement" I speak of with Gabriella. Both Gabriella's pediatrician and physiotherapist both agree that there is NO weakness in muscle tone and that the movement we see if actually caused from her being overly excited and a loss of concentration. What this means is that when she is tired from a long day and is running or playing with friends this "odd movement" presents itself because it must take a lot of concentration for her to maintain smooth consistent movements especially while tired. We have been told to make sure we keep an eye on that as it could be an issue in kindergarten (lack of concentration)...although I have to say to me Gabriella has an amazing ability to concentrate on things for a long period of time so I am hoping this lack of concentration and coordination with her large motor skills while tired does not overlap in the area of schooling and concentration??

Well there we have it. Nothing else new to update. Gabriella's eyes are doing very well, she is wearing bifocals now and they are working wonders. No need for surgery and it is possible that she is developing the ability to see some 3D (binocular) :)

And back to the physio we go...

Even since birth Gabriella has done this "strange movement" when she is stressed, tired, in a new social situation or excited. It has mostly been a movement only myself and her Father have been able to see. It is also a movement I have always been unable to catch on videotape or have her demonstrate to her physiotherapist although it was described and talked about (when she was seeing a physiotherapist). The "movement" -which I am sure I have described in previous posts, is almost like a jerk like movement while in mid motion (usually running) with her right arm and I am thinking hip. It is like she is running towards point "a" and her right side says umm no lets stop for a second so it pulls her to the right and it catches her off guard and she almost falls.

It seems like this movement had disappeared for quite sometime. In the beginning it manifested itself as her right arm flinging backwards all the time and as an infant she was unable to keep her arms in front and together, with lots of physio this "disappeared." Although we all know it doesn't really disappear; your body just learns how to compensate for the issues.

Recently though it has come back and Mike and I have both noticed. This was confirmed even more so yesterday when a teacher at Gabriella's preschool asked me "Have you ever noticed an issue with Gabriella's balance?" For some reason, my answer was a distant kind of eery yes..it haunts me really.. I don't know why and I can't even explain it. I felt a mixture of emotions 1) YES finally someone has seen her do this! 2) How could I have let this "movement" hang around for so long and so quickly forget she had done it (just because she stopped for a little bit) 3) Guilt

This wonderfully observant teacher was a fill in teacher; I have never met her and I knew she didn't know Gabriella's medical history. Gabi's attends a university preschool which I love and her teachers are amazing and don't get me wrong I am very grateful this person brought this to my attention but I am really perplexed as to my response. It was like an emotional floodgate was opened (although I managed to keep back the tears). I know, it sounds all so mellow dramatic and as I type this I can't help thinking to myself ..wow give me a break, she's doing so well and your worried about an odd movement. It could have been a lot worse. For the last year I was living in a world where I think I actually tricked my mind into believing that Gabriella was not affected at all.. I have no idea why I allowed myself to think this way...she was affected (I am full aware of the fact that was doesn't mean "is gone"). We worked so hard with physio for two years straight ..but all non typical issues melted away and I believed they would never return, our physio found no reason for us to continue seeing her and so I believed all was resolved.

So enough pity party for me; it's time to get back to physio.
My biggest question is how could a "symptom" disappear and then reappear. The damage from the stroke has been done, this is not degenerative. Therefore, I now believe this is caused from a mild form CP-although Gabi has never been diagnosed.
Do these symptoms become more apparent during growth spurts?

If anyone has any experience with "odd postures and movements" that only appear at times of stress I would love to hear from you. I really am interested in knowing what frequency of physiotherapy your child requires or if it's just a strict
regiment of keeping fit in sports so the "weaker" muscles don't dominate??

Thank you in advance to all out there willing to share your experiences :)

Near Perfect Vision

In terms of Othamology appointments, the last appointment was darn near as happy of an appt. as you could get.

We determined that Gabriella was indeed (as suspected) not actually looking through the "bifocal" portion of her lenses and when she did her vision was worse. So the test (prescription adhesive strips) were removed.

The interesting part about bifocals is that they did, in fact, straighten her eye out but worsen her vision.

Well anyways, the GOOD part of the visit was this. Gabriella's vision and turn are measuring equal which indicates to our Opthamologist that she is coordinating her vision much more than we suspected. The turn has also dramatically reduced (while wearing her glasses) to 10. Remember 15 and above is recommended surgery measurements. If she takes her glasses off however the turn is quite significant.

Her vision is also 20/25 which is pretty near perfect and is way better than mine :)

We are still monitoring her turn every two months and the requirement to patch for 2 hours a day has been reduced to 1 hour. I know that surgery is inevitable but the longer we can prolong it (as long as vision is not being affected) the better. That way when she does have to have surgery the result can be more precise and she can communicate better as to the issues she is experiencing with her eyes.

For now, i am so happy that she is comfortable with her glasses, her vision is excellent and her turn is maintaining under surgery required measures.

:)

Bifocal checkup

Tomorrow is Gabriella's bifocal checkup.

What I have noticed since Gabriella has been wearing her new temporary bifocals:

1) In the beginning..lots of falls, bumps and walking into door handles. After two weeks no more bumps and bruises..it must be tough to train yourself what part of the lens to look through at the appropriate times..especially as a toddler.

2) Mentions she can see better far away then close up so I am not 100% sure she is using her bifocal part of the lens or if she has just decided to look at things through the upper part of her glasses. The "temporary" bifocal is a prescription sticker and looks incredibly hard to see through (it's very ribbed). The actual real lens I am sure would be easier to see through.

3) To be honest, I don't see the turn in her left eye lessening. I am not too optimistic about this meeting tomorrow. I am thinking this will be the appt. where we have to decide on surgery or not..wait.. anyone getting the feeling of dejaview..hahah, I think I have said that at least 5 times and each time the Doctors have "one last" trick up their sleeves (which I feel is good). Better to exhaust all means before going the surgery route I think.

Anyways, as per usual.. fingers crossed.

Cheers,
CB

Bifocals

Gabriella is now wearing bifocals and as usual her eyes are being monitored and we're still on the cusp of surgery.

It seems when she views things up close her turn goes in quite a lot however when she is looking further away her turn is lesser. Hence the bifocals.

Because we are increasing her prescriptions our vision therapist has said it's best we hold off on the therapy as he feels the action of increasing the prescription is the surgical route.

This confuses me..It's not surgery vs. therapy...it is simply whatever helps my daughters vision and I truly believe both will. I refuse to let Gabriella wander around not seeing as clearly as she could based on therapies that could or could not work. My question is: why can't we just develop a therapy that works and assists with the increased prescriptions?

I value vision therapy and still think it is imperative to helping Gabriella learn how to cope with how she will see the world (ie. perhaps this could cause issues with reading when she is older etc.). The therapist believes that surgery will make the therapy less possible however he also says therpay for children of Gabriella's age is very hard (she is almost three) so I don't really know what else we can do and I don't want to be stagnant and let her eyes worsen (possibly gain ablyopia-loss of vision) because we want to "see" if the therapies that a three year old can hardly do will work.. eye sight is not something I am willing to risk with a trial and error based philosophy. So frustrating!! But good news is that Gabriella has adjusted well to the bifocals although at the beginning it did result in a number of falls/cuts/bruises.

GO CANADA!!!

Quick eye update

Eye appointment went well despite the fact that I ended up getting the Antropine drops in my eyes and had pupils the size of saucers for a day and a half.... yeah not a pretty site and how the heck did I even get the drops in my eyes to begin with?? When I first read the Antropine eye drop directions it clearly marks "parents make sure to keep drops out of your own eyes." My first response to that statement was to be honest "what type of idiot could get the drops in there eyes ..don't they wash their hands" anyway uh huh cough cough.. looks like I'm that type of idiot. anyways back to the point. Gabi's new prescription is almost 2 units larger than her old prescription. We have now received her new lenses and in two days I can see her eyes straightening,she is much happier and is not rubbing her eyes as frequently. Looks like this will be a success. We are going back in 6 weeks to measure the turn again :) I have a feeling we may avoid surgery once again.