Last Day with the Cast!

It is an exciting day! Summer will have her cast removed at 3pm.

I am so proud of how well she adapted to life without the left hand. Only a handful of times (no pun intended) did she ever tell me that she didn’t want the cast – and that was on day 1 and 2.

The rest of the 3 weeks, she has persevered with a smile on her face and her usual good humour.

She has gone through a few waves of severe fatigue and certain days she has been extremely hungry at breakfast and supper. She had one day home with Dad (Monday) and she stayed in her pajamas all day. Mind you, everyone should take a ‘me day’ once in a while! – I didn’t ask how many times she watched Franklin’s Turtle Lake, but I am sure it got a work out.

I am so impressed with the skills she has developed. The speed and quality of movement in her right hand and arm has visibly improved.

o When she feeds herself with her right hand with a fork, it does not look as awkward as it once did. I videoed it last night as I was really shocked at how fluid her movement was.

o She reaches to press the egress buttons on the doors at the Y, instinctively with her right hand – even though she could just as easily smack it with her cast.

o She has developed a better pincer grasp but uses her middle finger – she will always find a way to problem solve.

o When she weight bears on her hands and knees, she is much more stable on her right side, and again, it just doesn’t look as awkward.

o She instinctively will wipe her face with the back of her right hand. I am sure it only took one bonk from the cast for her to figure that one out.

Yesterday we ran into our IDP therapist at pick up time at the Y. She let us know that Summer has developed a new way of drinking – Sippy Cup, Sans Hands…

Though the cast comes off today, we will still be encouraging her to use her right hand and both hands together. I am looking forward to her regaining her independence skills such as taking her shoes off, pulling up her own pants, washing her hands. Along with all the other two handed stuff.

We are heading to Toronto tomorrow to visit with Auntie Barb and Uncle Laurie. Summer will have the AHA – Assisted Hand Assessment at Sunnybrook NICU Follow Up Clinic (located at WCH) on Monday. She will have the follow up QUEST at One Kid’s Place on Thursday.

These assessments will be repeated after 6 weeks to measure the skill retention.

I am excited to compare the video from the initial assessment. And if I ever figure out how to upload the video onto the blog, I will share some clips.

Summer, we are so incredibly proud of you!!!

Eating - great therapy!

When I arrived to pick Summer up at daycare yesterday, the kids were having 'late snack'. I watched her from the door while she handled the tongs, picking up her banana slices. I could see it was difficult for her, but she was trying hard.

I pulled up a chair and sat with her while she ate. She also managed to drink out of an open cup with no handle, using primarily her open right hand, but her cast to steady it. Her teacher was impressed with this (we had been practicing this at home), as she has been using a sippy cup with a handle at daycare for the duration of the casting.

We are looking forward to cast removal tomorrow!

School Case Conference

This afternoon we had a ‘case conference’ at Summer’s new school that she will be attending Jr. Kindergarten in the fall. Her pediatrician, OT, PT, IDP therapist , Don and I attended, along with her new principal, the special ed coordinator, and another lady, whom I can’t remember her title… it was a lot to take in.

We talked about all the things needed to ensure Summer is going into a safe environment. We discussed her shunt, educating the staff and teachers, and how important it was to be aware of the symptoms of blockage, failure or infection.

I provided a hand out that had several bold type words, and a few large red ones too, just for emphasis.

The largest obstacles will be the stairs to the gym; Summer will require assistance, toileting; Summer will need a step up, and the bus from daycare; Summer will need help up the big step.

Already I confirmed with the Bus Assistant at daycare, that she assists all the children onto the bus, and ensures they are safely seated. And vice versa – Summer will receive assistance getting off the bus.

The meeting went remarkably well, though I must say, it definitely felt foreign to us to be so focused on Summer’s limitations. Not that there are many, but that we just don’t think of her challenges as limiting.

As always, her care team had so many wonderful things to tell the school about Summer. I am sure I am no different from any parent – but I never get tired of hearing how much our little munchkin is loved.

After dinner tonight, I finally got Summer to paint me some ‘finger paintings’. All right handed. I could not seem to get her to open her hand much though. Even though she was seated. Oh well, at least I got my paintings!

3 days to go… then we’ll be ‘cast free’!

Played Out

It’s been a very busy weekend. Summer had lots of time outside. She enjoyed her dancing class on Saturday, friends over for supper during the evening, and a trip to Lavigne to visit more friends. Summer got to meet the Bell’s for the first time, as Dave and Stephanie were visiting Tracy and Cleo for the weekend. Tracy and Cleo cooked an amazing dinner (as usual). Summer, Don, Tina and Meghan headed back to North Bay at 7pm and I stayed behind as I had business in Sudbury on Monday.

Monday morning I touched base with Don and Summer. I guess Summer had too much fresh air and activity on the weekend. She was exhausted and not feeling well, so she and Don stayed home to ‘recover’.

Sunday night at dinner at Tracy’s Summer did a lot of independent feeding. I hardly had to help her at all. Incidentally, we forgot her large handled fork at home, but it didn’t seem to matter. She adjusted just fine.

I am home now, a very tiring but great day. Summer seems none the worse for wear, but very happy to see me. – that’s the best. Right now, she is dancing to her music and ensuring I’m watching all her ‘moves’.

Summer the Sneezer

Summer did really well for Wednesday’s visit with her OT. They made the card together. Opening those wavy blade scissors was tricky because they are stiff but she does really well with squeezing them closed on her own. The colouring was done independently. The printing was hand-over-hand but Ann felt like I was on a Ouija Board because the way Summer was moving her had felt like she knows the letter formation for some of the letters in the words we printed on the card.

Ann said Summer was very funny when she was with her in the play room: Summer kept pretending to sneeze and then would apologize for her “terrible sneezes”.

Ann noticed that she seems to be moving her right arm faster when she is reaching, throwing overhand, bouncing the slinky up and down or swinging the slinky like a skipping rope.

Ann had Summer open her hands wide and then “Give me 10” with our hands in the air and she was able to get her right fingers extended well.

When grasping Summer is able to get her hand open and around objects such as the chicks in the eggs. She tends to use her middle ring and little fingers more than the index finger: it tends to hyper-extend at the first knuckle where the finger joins the hand and then she flexes at the joints within the finger.

When trying to pick up small items Summer was able to use the tip of her thumb against the side of the tip of her middle finger although it was inconsistent – at other times the timing of getting the fingers and thumb closed was off with the fingers closing faster than the thumb.

When trying to turn the noise maker tube up and down she still tends to tilt her whole body instead of pronating her hand fully or internally rotating her arm but she is not leaning as far and with cuing she will try to move the tube without using her body. Yesterday she used her left hand to help turn the tube to assist with pronation and supination.

Summer operated the See’n’Say pulling the hand with reasonable speed and she was able to easily release the lever. She was also able to quickly rest her hand on the turning arrow in the centre to make the taking stop – she would stop it and then release it repeatedly with good speed and control.

Jody told us that Summer was able to fit 10 pegs into the foam peg board on her own and was able to stack 8 blocks (with help to support the top block each time she went to put a new block on) the previous week she was having trouble lifting her hand off the top block when we got to 5 block – she would know the top block off as she went to release it.

She didn’t say “I don’t know about this” for any of the tasks today.

This morning while we were getting ready to go to school Summer said to me: “We’re a great family!” - I guess I have to agree :-) This kid keeps us smiling.

One handed crafts

Yesterday Summer made us this lovely card. Her teacher helped her with the writing, hand over hand.

I love seeing these little treasures at the end of the day, especially when they are 'right handed'.

Summer has been telling her teachers all about her new playground with two swings and a green slide that Daddy built. She failed to mention that it is still in pieces on the garage floor, as it was just purchased on Tuesday.

She also likes to look at her bike every morning, to make sure it is still in the garage. Her 'cage peddals' are on order - she is still too young to ride clipless ;-). Hopefully they are in soon, she is anxious to get riding.

Tuesday's Activities

Summer’s Developmental Therapist saw her on Tuesday. When she arrived Summer was still having her nap. She was very excited to wake up and see what Marg had in her toy bag.

Marg has quite the fan club as she prefers to work with Summer in the presence of her peers. I have seen it in action... and she looks a little bit like the Pied Piper...

She brought a large bin of "girly" Lego (Little mermaid) and somehow a few toy story Lego was mixed in so the boys were happy too.

Summer was very interested in the Lego and we put Arial in the shell. She made a tower etc. Now I know why she was so interested in wearing her Ariel pyjamas last night!

When they went outside they did drawing with the mess free marker on the fence. They used a very large piece of crayola paper and the markers that turn into colours.

Using magnets that are a variety of shapes making monkeys etc. and puzzles that were magnetic, Summer’s friends put the puzzle pieces in and Summer used a tube shaped magnet to pick up the pieces.

Summer’s favourite activity was the bubbles. Marg and Summer were both sticky when that activity concluded!

Marg mentioned that Summer was a little tired yesterday and she thinks the novelty of the cast has worn off. She is excited to try anything but sneaks her casted hand in from time to time. In most cases it was o.k. as it made the quality of her movement better and more symmetrical.

When trying more challenging skills Summer sometimes adjusts her body to allow her to get her arm in the correct position. She is much quicker at picking up items now.

Summer continues to help Marg with her "running" when all else fails. :-)

Good start to the week

Summer had a great day. She had her hour session with her teacher Jody. During their time Summer made this bracelet. She pinched the pipe cleaner with her casted fingers and threaded the pasta and foam ‘beads’ all by herself. She was very proud of her product when we picked her up.

After work we went to Home Depot to pick out a long over due swing set. Summer is really excited about it. We hope to have it put together just in time for AFTER bug season. Next item on the shopping list – bug shirt – Summer Sized….

Funny thing she said on the way into the house today, she looked up at me and blurted out “my legs are killing me!”

Sneaky Fingers & Sunshine

Summer has discovered how to pick small things up with her casted hand. She has also figured out how to drink juice from a sippy cup with no hands at all.

We had a great weekend. It started out snowy and cold, and now, as I look out at the calm bay, it is about 14 degrees, sunny, water sparkling. Summer enjoyed her dance class on Saturday and her fatigue from the week kicked in during the afternoon so the rest of the afternoon was pretty quiet. We watched a movie - Franklin's Turtle Lake - again... She was early to bed with no fuss. Maybe there is something to this cast?

Sunday could not be more different - all around. We awoke to a sunny crisp morning. We took a stroll down our road in the morning to visit with Barb & Vera. We played catch with a small soccer ball. Perfect size for Summer to grasp and throw.

Summer's walking continues to improve. Since receiving Botox in her right calf muscle 10 days ago, she is lifting that foot while walking very well. Typically, she tends to scuff the bottom of her right toe, or if she is going to trip, that will be the foot... But this morning I really noticed an improvement.

While we were out visiting Don launched the boat. Almost a record early year. Our neighbour Gerry had his boat in first... But we beat him to the water a few weeks ago in our canoe!

We packed a picnic lunch and tried to find a bay on the lake that was out of the wind. No luck there, but managed to find marginal shelter in order to eat lunch. We picked up a few beaver sticks and headed back to our beach.

Summer ran around on our deck for a bit then we headed out for a walk. Summer decided to ride in the stroller so we did a short 4km walk down the next lane and back.

We finished up the afternoon playing some T-ball in the yard. Summer and Don played ball, I pulled some weeds.

I think we will all be early to bed... after one more viewing of Franklin's Turtle Lake....

Made it through week 1!

Ok, well it technically is not a full week under the belt, but five days, cast on, -it's a victory. Summer only asked me once yesterday if we could take her cast off because she did not want to put a bag on it for her bath. So, we skipped bath last night - problem solved.

Summer had a great day at school yesterday. It was her first day without a 'therapy visitor'. She had 'special 1:1' time with her teacher, Jody, for an hour in the morning. By the end of each day this week I was really excited to see her and find out what wonderful things she did with her right while at school.

We ran errands after work and Summer had a great time running in the mall and then being and obstacle for the other shoppers in the grocery store. :-(

She was visibly exhausted when we got home and she had another 'early night'. Whew!

Playtime with the new cast

Summer's developmental therapist met with her yesterday afternoon when Summer returned to school after re-casting.

They had a great session outside in the playground and snack. It was a physical session, as when she was tired of fine motor play they had to "run" and "jump".

They also had a game of hide and go seek and Summer instructed Marg to "hide in the grass", however there wasn't really any grass so she was very easy to fine. Marg focused mostly on what was outside and how to incorporate her everyday play with encouraging our objectives.

They pretended to go ice fishing with a broken hoola hoop encouraging the index finger to go around the hoop, they found 10 rocks for their recipe, found sticks to put in out cake for candles, played bat the ball etc.

She is a real trouper and game for anything offered. She was getting tired by the time we went inside.

The one handled sippy cup is working very well. She appears to think that if she can't hold the railing on the stairs with her good hand she doesn't need to hold at all!

What a kid!

New Cast!

Summer is now sporting a brand new NON-REMOVABLE cast!

It is a smaller, more streamlined version of the original. We’ve ‘decorated’ it with some silver tape (over the edges to provide protection) and some Strawberry Shortcake stickers (thank you Lindsay!).

She was super amazingly good today. I thought since she knew what she was in for, that she would give Karen and I a really hard time… but, I read her a Franklin book while Karen put the cast on. Summer just sat there patiently with her arm out. There was no complaining or whining. I was really proud of her.

She was also excited because once the cast was on, she was allowed to open her present from Lindsay which included the stickers, two Disney books, AND a sucker. Karen thoughtfully used some tape to build up the handle on the sucker to make it easier for Summer to grasp with her right hand. (never miss a therapy moment!

Summer enjoyed sucking on the sucker, and drooling ‘sucker juice’ all the way back to daycare. She couldn’t wait to show her teacher Jody her new cast.

I’ll post some new pictures tomorrow.

Other comments from Summer's teacher after therapy session yesterday:

"Summer's interest was sustained longer than any of us had anticipated.
Between the "bag tricks" I put together and the one you dropped off and the one Ann had there were plenty of acitvities to keep her engaged.

She was indeed her usual perky self today flashing her cast at everyone who passed her and removing it twice to prove her arm wasn't broken.

I joined Ann and Jody for the first day and will try to continue to offer support this week.

I was able to assist Summer at lunch and found it ironic that a lefty (me) was helping another lefty use her right hand to feed herself. I shared with Summer that my strong hand is my left too. We giggled about it.

I checked on her when I returned from my lunch break and she was already asleep.

We feel fortunate every day Summer spends with us. We learn as much from her as she learns from us. It's a beautiful relationship.

Summer's energy is like the kind of contagion you want to spread around. I've seen her bring out the best in children who have poor social skills. When they're near her, they are gentle as can be. I wish I had a secret camera for you to see what we see because as much as I'm sure she's similar in personality wherever she goes, you must wish you could be a fly on the wall to see what she's like when you aren't with her."

Evening:
Last night Summer continued to keep her cast on. She was a trooper over supper and did most of her own feeding with her right hand. Sometimes it looks so difficult and awkward. But she gets it done. After supper we sat down for some relaxing time and she told me "mommy my head is tired". A testament to her hard work all day long.

Hard Work!

Ann our OT gave me a full report from her visit with Summer this morning.

First, she was amazed that Summer was voluntarily keeping her cast on. She took it off once this morning: A mom at the daycare asked her how she hurt her arm, Summer yanked off her cast to show the mom that it was not hurt, then put it back on!

She continues to keep her cast on –voluntarily-. I guess last night when she saw how upset we were with her pulling it off, she understands that it is not an option.

During therapy today Summer used her right hand A LOT!
She is leaning a bit when scooping so she needs to be reminded of her posture. She was stacking toys, putting pegs into a foam pad, and opening play eggs.

She wanted to do some creative work and did some paper cutting. She can close the scissors, but had a hard time opening them. Ann will see about using some spring loaded ones for a bit. Summer also enjoyed doing some hole punching with a single hole spring loaded hole puncher.

Summer had an amazing attention span for 45 min. Ann decided to let Summer let her know when she had enough. At the 45min mark Summer decided she had enough fine motor and she wanted to show Ann all her hopping and jumping skills.

Some of the expressions Summer had during her therapy today:

“this is tough!”
“I’m not sure about that!”

Ann mentioned that toileting was ‘interesting’ but they managed ok.

Summer’s little friends are quite interested in her cast. Hopefully it motivates her to keep it on.

We are schedule to re-cast tomorrow at 1pm.

Ann mentioned that Summer was in an amazing good mood this morning and that after the therapy and play she was starting to look a little tired. I am sure she will have a good nap this afternoon.

Going well - then oops....

Well today was cast day. Karen our orthotist was very caring and made sure that she used ample padding. It was touch and go in the beginning, she fussed when the sock was going on her arm, and I thought we were in for a rough time. But she seemed to settle down and we got it done. In the end, she was quite the superstar.

We headed home, stopping at the grocery store for the requested treat: Pink Muffin. I managed to find some mini cupcakes with sprinkles and they did the trick. All the way home she was in good spirits.

When we arrived home, she told us she didn't want her cast on anymore. We managed to get dinner on the table and Summer fed herself a few awkward bites. She did very well with her slice of bread though. Ann our OT gave us some foamies to put on the ends of utensils and they worked very well for a good grip.

After supper, Summer went to watch her 'show' 'Little Bear' while we cleaned up from dinner. she called to me while I was a the sink, and again said "Mommy, I don't want my cast" - Don looked in on her....

Lo and behold, she had yanked it off....

After spending 2 hours this afternoon at the Ortho Lab getting it ON... we were pretty deflated.

So... We took advantage of the cast removal, and put her in the bath....

We managed to insert her hand and some padding in so that it didn't fall off... as a stop gap, until tomorrow.

Gee.... not really looking forward to the re-casting. I guess it takes more than 5 adults to outsmart at 3.5 year old.

Cast Day

Today is the big day. We are a little apprehensive but also a little excited.

Summer has chosen a dolly to take with her to also receive a cast. We keep telling her how special it will be to have a cast and that she can have her friends sign it.

Don and I made a 'pact of patience' yesterday, and promised each other to do our best to keep the keel even.

BOTOX

We departed Barb & Laurie’s on Wednesday bright and early. Summer was hungry and cranky – as she was not allowed food or water after 10 pm the night before.

Summer received her Botox treatment on at Soldier’s Memorial Hospital by Dr. Jones, Developmental Pediatrician.

Summer receives conscious sedation orally about 30 min before the procedure.

Even with the calming effect of the sedation, Summer screamed like a banshee and flailed like a bass on a hook and that was when Dr. Jones was landmarking her spots with a pen… Oh the drama!

After a squirt of Lidocane on each of the pen marks – which she also wriggled and screamed for, it was time for the real pain. Summer received Botox injections in her bicep, forearm, thumb and calf. Though the Dr. says it is a small needle, it looks absolutely huge to me…

Botox is designed to lower the tone in the muscles to allow the opposing muscle to strengthen. It helps reduce the spasticity and enables her to do things like open her hand and reach with an open hand.

Summer tends to favour walking on the front of her right foot when not wearing her orthotic, so the injection in her calf reduces the tone and lets the heel come down.

#1 Lesson learned yesterday: Have your child use the washroom BEFORE the procedure - even if they say they don't have to go - unless you want to have a VERY damp lap. Thank goodness we still had our suitcases in the car... A three year can produce a lot of pee.

I keep hoping the Dr. will offer up the leftovers... at $450 per vial... I'd say I am already invested and deserve an expressionless face....

After Botox, we headed to Huntsville to a park for a little play-break, had lunch, got groceries and headed home.

It was an exhausting two days.

Casting on Monday –We’re a little nervous.

AHA – Assisted Hand Assessment

Summer received the AHA on Tuesday with Lauren (OT) at Sunnybrook. It took about 30 minutes and Summer’s attention span was in good form. The session was videotaped for comparison with her follow up AHA after the CIT casting period.

The Assisting Hand Assessment (AHA) is a hand function evaluation instrument, which measures and describes how children with an upper limb disability in one hand use his/her affected hand (assisting hand) collaboratively with the non-affected hand in bimanual play.

The test is developed for use with children who have a unilateral disability, i.e., who have one well functioning and one less well functioning hand such as children with hemiplegic Cerebral Palsy. The AHA can be used with children as young as 18 months and up to 12 years of age.

The AHA has the unique perspective of assessing how the child use their two hands together, in a fun and engaging situation where using two hands is natural. It is the child’s spontaneous and normal way of handling objects when playing that is assessed, not their best capacity to grasp, release or manipulate objects when prompted to use their affected hand. This makes the AHA a measure of usual performance.

Happy Easter

What a weekend!

We had a fun-filled Easter Weekend. We started out in Peterborough at Auntie Bern & Uncle Dale’s on Friday. Summer met her cousin Emily her husband Gabriel for the first time. Summer latched on to her and Emily was her new best friend for the weekend.

The Easter festivities did not disappoint. Summer had fun playing with her cousins Maddy and Will. The kids enjoyed two egg hunts and a little chocolate. We managed to intercept some sneaky chocolate eating by Summer who was taking little chocolate eggs into the other room to unwrap and devour out of sight of the adults. Sneaky Sneaky….

Summer reported that she had a ‘gazillion’ eggs. So I think she felt the Easter Bunny was generous.

On Sunday afternoon Don and Uncle Dale went to Apsley for a family history fact finding mission, and came home in time for supper with some interesting info.

Monday morning we spent at the Canadian Canoe Museum. Summer was a good sport and enjoyed the teepee and the beaver pelts.

We headed for Bolton after lunch to stay with cousins Barb and Laurie. Summer couldn’t wait to get there so that she could go to the park. I think we wore out the 2 parks in Peterborough and Bolton over the weekend.

Photos to come...

Congrats Trousdell Five!

It could not be a happier day for our friends the Trousdell's. Tomorrow, after 150 days in the NICU Nolan and Asher will finally be discharged home.

Congratulations! you made it - now the fun begins.

We look forward to reading your blog in the coming months - if you have ANY time to write!