Never think you are ahead of the game

It has been an interesting week...
Last week when we went to the Orthotist for Summer to be fitted for her new AFO, it was beginning of the emails flying back and forth from our PT here in North Bay, our PT in Toronto, her team, and our Orthotist here to discuss a plan for Summer.

Summer has been through a significant growth spurt and there is marked shortening of her achilles in her right foot. Combined with leg length discrepancy (LLD), we need to decide how to proceed. Our PTs and Orthotist have been discussing all the technical aspects of the AFO and options around that. But last Wednesday the term 'serial casting' was brought up for the first time.

My heart dropped.

Serial casting is where the patient (Summer) receives botox in her calf and then her leg is casted for three weeks with two recastings at one week and two weeks. Each cast puts the foot/leg into a further stretch focussed on lengthening the tendon. (kind of like when an adult 'blows their achilles').

But it is summer.

After several discussions, and a couple of tears with our PT here in North Bay, I understand that for one of the first times, we may choose to postpone a therapy choice. Usually an option is given to us and we go for it, even when it will be challenging in terms of time, effort, travel, etc..

We are still to have the Team conference call to discuss treatment plan, but at this time, I just can't take away Summer's summer. Our PT assures us that Family Life should always be a consideration when choosing how to proceed. And it may not seem like we are really in a dilemma but we are. If we are to proceed with serial casting, I am hoping that waiting until the fall waiting will not have a huge adverse affect.

I know there will never be a great time for something like this, and I am not sure about how much of a choice we have, so we'll have to see what comes out of the plan.

Meanwhile, I am making sure Summer gets 2-3 heel cord stretches everyday. Usually I can distract her enough while she is brushing her teeth. I am running out of tricks though.

Besides having this on our minds we had a great weekend with some beach time, swimming, boat ride and even a little gardening

At the moment this evening, Don is teaching Summer how to play monopoly. The last couple of days she has been obsessed about money, so we thought it was a good way to work on her numbers etc. Maybe she will be an accountant when she grows up. I am not sure who is having more fun...

Suckers!!

Summer had an X-ray last week to identify leg length discrepancy. They did a standing X-ray and her position only revealed a 5mm difference. When I questioned about the orientation of the X-ray, the Radiologist said that they can repeat the X-ray in supine as there may have been some flexion in the right leg.

This morning we were at the Orthotist where they cast Summer’s feet so they can make a new AFO and Orthotic. We discussed leg length, the practical application of a lift, comparison between the X-ray (though inaccurate), Maureen’s measurement, and Karen’s assessment with inserting a lift ‘plate’ (the plastic pads the orthotist uses to measure what it will take to help Summer get her heel down). Karen, the orthotist is confident that a 3/8” lift is sufficient at this time.

I am hoping to not have to repeat the X-ray as Karen said: numbers are great but the practical application is really what counts…. Summer looked great and even when standing on the ‘lift plate’. But this will be the call of her PT in Toronto, as they may need to monitor the long term outcome.

Our PT attended our appointment today too. They both feel that Summer’s AFO should be fixed/rigid for a few weeks until her planting becomes more heel toe. Andree will see her a few times a week when the AFO is delivered on July 13th – so that she can do extra work with her. Then the plan is to engage the hinge in the first week of August before we leave for BC- vacation.

We have returned to a custom orthotic on Summer’s left foot – Great – we get to return to Summer wearing two different shoe sizes on each foot… so much for a victory!

Summer picked a butterfly pattern for her AFO – I am just relieved she didn’t pick the Toronto Maple Leaf’s logo pattern – as if anyone would? HA!

Summer was a pretty good girl for the appointment – though it did cost me two SUCKERS and several readings of ‘Fluffy’s Adventures’.

Super Duper Tuber!

Summer was a brave girl!

It was so nice to stay home this weekend. The weather was off and on – with Sunday being the nicest day. What a perfect day to have the Shunk’s out for the afternoon and dinner, celebrate Father's Day and Don's Birthday.

We started out with a swim – well, Don, Buster and the girls did… Tina and I caught up and relaxed on the dock. Then it was time to play!

Summer got in the tube and rode with both Riahan and Meghan! For weeks she was telling us that she would not ride the tube – EVER! But, when faced with spending time with her ‘big girl’ friends – she did not disappoint.

Then it was our turn to play and we all took our turn having a ski around the bay.

Dinner was followed by Meghan showing off her endless cartwheels – Summer tried hard too.

Summer is here!





Cartwheels!

I can’t believe our baby girl is going to Junior Kindergarten in September.

On Tuesday morning Don, Summer and I attended the Junior Kindergarten Orientation at St. Hubert School. We chose this school because right off the bat, Don had a good gut feeling when speaking to the principal. I happened to not be there at the time, so Don stopped by to pick up some registration materials and happened to have a impromptu mini interview with the her. She has a ‘can do’ attitude and is all about making sure children have what they need to be successful at school. Our Infant Development Therapist also assured us, as she said that the school often calls her for assessments and advice – a true sign that they don’t let children flounder and try to identify challenges early.

The gym was set up with stations where the kids would rotate through doing activities. The activity leader would deliver information focused on school readiness to the parents, while the children completed the activity. One of the stations was a music station where the children were encouraged to dance. Summer swayed a little and Don and I laughed that after 6 months of dance classes that is all we get…a little sway????

One of the stations a lady talked about her dogs. Summer of course filled her in that she had a dog too, Carl, but he died, then she gives the saddest face. I don't know whether to laugh or cry...

The highlight of the morning was the bus orientation where we all got to ride on the bus. The bus rules were emphasized and we took a ride around the neighbourhood, practiced embarking and disembarking. Unfortunatley the railing to get on the bus is only on the left hand side going onto the bus, so there is not railing for Summer to grab onto for getting off the bus. This is something we need to examine in September when we see how tall she will be by then, and the exact bus she will use.

By the end of the orientation Summer and the rest of the kids were pretty pooped.

That afternoon we headed to One Kid’s Place for the follow up QUEST test… will report on that later…

Neuro, AHA, Science Center Fun

I am going to report on the weekend - but not in order of events…

Summer’s annual check-up with her neurosurgeon went well. He was running an hour late – which seems like a really long time when the waiting with an active 3.5 year old. Summer amused herself by taking 45 pictures with my cell phone camera, mostly of her feet, the floor, etc…

She played shy during the appointment – would not let the Dr. near her, but he managed to get a look in one of her eyes, and had a feel of the back of her head where her shunt is. All age appropriate behaviour, as she only sees him once a year so there is no familiarity between them.

I have forgotten how sad I feel after this appointment. For all the good, there is a looming bad that we don’t think about every moment – what happens if her shunt blocks or malfunctions. We educate her teachers, warn of the signs etc. but what if… Part of our appointment is ‘the discussion’ – education – about signs and symptoms of what to look for. And then there are the ‘warning stories’. He tells us about people that wait too long, dismiss symptoms, and pay the ultimate price. It is a sobering reminder and it kicks you in the gut. I know we are so fortunate to have come this far without a malfunction and hang onto the hope that when it presents we are prepared.

Right before Neuro we went to WCH to have the 6 week follow up AHA (Assistive Hand Assessment). Summer was in good form, charming, polite and playful. The session is videotaped and the assessment is made on second viewing of the tape. It can be deceiving. When she had her first follow up, I thought she had done significantly better – but when I compared my video that I took, I could see only small improvements.

We also received the report from the first AHA performed 3 days after uncasting. She went from 43/88 to 47/88 – which doesn’t seem like a huge improvement but the assessment tool looks as consistencies of movement. I am pleased with the results. Even small improvements are amazing. It has been proven through an fMRI (functional MRI) scan that CIT can result in ‘neuro-recruitment’ – brain growth. Pathways in the brain that are practiced stick around – and the ones that are not used fall away – the use it or lose it scenario applies. The fact that she can overcome high tone in her hand to build some motor patterns is impressive.

Maureen also measured Summer’s legs. It is a crude measurement but it showed 1.5 cm difference, so we’ll schedule and X-ray to obtain a more accurate measure so that we can see the orthotist to have a sleight lift put on her shoe. She’ll also be getting new hardware in the next month or so – a new AFO. She has grown 2 inches since December – so it is time.

We had a good time with Barb and Laurie – bless them for having us time after time on our trips for Summer’s appointments. We celebrated Barb’s 60th Birthday on Saturday night with dinner out, and a couple game of cards after. Barb and I ruled the deck this weekend – I think we won all the games – except maybe one…

On Sunday, we met up with the Miller’s at the science centre for the afternoon. Summer had so much fun with Matthew, Eric and Emilie. I think her favourite part was the pretend market with all the pretend food and the pretend check-out. Gramma would be proud of her little shopper. It was a busy afternoon – though not that crowded – but completely over stimulating – for an adult. Unfortunately we ran low on batteries for the camera so there are not too many photos (sorry!) The Miller’s will come to our place for a weekend in July – Summer is super excited, and very excited that they will bring their dog Kiki.

The Brain Guy

Monday will be our 3rd annual follow up with Neurosurgery at Sick Kid’s. I must admit, this is one of my favourite appointments… as far as appointments go. It is short, the Dr. is usually on time, and we go with the knowledge that as long as Summer’s shunt is functioning well, we get the opportunity to wow him with her progress.

He comes across as soft spoken and intellectual – ok, well he is a brain surgeon after all. After our appointment last year, he said “she looks great”. I can’t explain how satisfying it is to hear that from him.

I guess a little bit of parent ego shows up… knowing that some of Summer’s amazing progress is a direct reflection on us as parents.

Also, I guess we are often participating with therapists, always concentrating on what is wrong – i.e. – this joint is tight, this range of motion is diminished, this motor skill needs work… it is just nice to hear once in a while that she simply is doing ‘great’.

So Monday we’ll see the Neurosurgeon – he’ll hopefully be equally amazed.

We’ll follow up that appointment with Summer’s 6 week follow up Assistive Hand Assessment at Women’s College Hospital.

But first – a weekend stay with our favorite cousins, Barb & Laurie, a few trips to the parks in the neighbourhood, a visit with the Miller’s and even a trip to Bass Pro.

I will post some pictures next time.

Sweet Lion

Dance recital weekend took place on Saturday and Sunday.




Summer’s class routine was to the highly acclaimed ‘Lion Sleeps Tonight’. She and her four other fellow lionesses danced around and followed the cues of the ‘lion hunter’.


The dress rehearsal had the most comedy. Summer’s tail fell off, so she decided to wear it as a boa for the remainder of the rehearsal. That evening I sewed it on – securely.
It was the cutest fiasco you have ever seen. I could not stop laughing – so the video is a wee bit jumpy.



Sunday – the big performance – all pistons fired. Summer actually paid attention to the cues (though not quite synchronized) and all of her fellow Lionesses performed beautifully. She was thrilled that our neighbours came to watch her – she was so excited to have more than just Mommy and Daddy in the audience.

We have never been more proud of her.

Since it was the studio’s 15th anniversary, there was a special video presentation and a whole two hour program of dance. Summer really enjoyed watching the other performances. She made it for a full hour before all the excitement started to catch up to her.

I have a feeling she will want to continue in the Fall. She has made some nice little friends so dance class also serves as an ‘organized play date’.

I know that where she has trouble with some of the movements, she makes up for with her enthusiasm, character and determination.