Tuesday, June 28, 2011

Botox Baby...

Last Wednesday we headed to Orillia for Summer's bi-annual botox injections. Everytime I hope it won't be as bad as the last, but it always seems to be worse. She screams, it is painful for her and distressing for us. The injections are deep and her muscles are small and tight. Dr. Jones uses ultrasound to get as precise as possible in locating the muscle, but even her pronator teres is so tiny I can't see it on the screen.

We have Summer sedated - she now calls it the "chocolate syrup that makes me feel funny". She is awake but in effect drunk.

Summer was super irritable when the Chocoalte syrup was wearing off. She had nothing to eat since supper the night before, which does not help. Once we were able to get a bit of food into her, she started to perk up.

Dr. Jones was great as usual, and always brings Summer a little toy to distract her from the procedure. Summer received 8 injections in total, and really, I hate needles, so I think she is a real trooper.

Summer found this 'cat in the hat' to play with in one of the treatment rooms.

Monday, June 20, 2011

Father's Day - the end of a perfect weekend

Firstly, I got to sleep in on Father's Day! Until 10am - whaaat??? (take it when you can get it!)

We enjoyed coffee with Barb & Laurie on the deck and revisited the party highlights of the night before. We helped them tie up a few loose ends and saw them off at noon. They are headed for Manitoulin Island for a new adventure. We had such a great time with them and it was really special that they were able to join us for Don's birthday party.

After seeing them off, our neighbour's sons and their sons came over to enjoy Summer's swing set and then we hit the beach.

Summer and Don went for a few rips on the seadoo, the kids did some tubing, and Reg and I had a ski.

We finished off the beach day with a seadoo cruise around the lake, just the three of us, then headed in for dinner.

Don and I are Les Stroud fans - aka Survivor Man, and Don mentioned once that he would like to learn how to play the harmonica, so we gave him one for Father's day. He has not braved it yet, and decided to buy an instructional book first - as I expected.

Check out this fish!~

Dad's Big 4-0

We celebrated Don's 40th Birthday on Saturday with a surprise party held at our dear friend's Tracy & Geof's home across the lake. 40 of our neighbours, friends, Don's coworkers, and cousin's Barb & Laurie from Bolton gathered to mark the occasion.

We managed to get him to the party with the surprise part in tact. I did not breathe a word about it in advance to Summer. She cannot keep a secret!

One of the best parts was after the round of 'happy birthday' at cake time, Summer yells out a big 'wooohoooo, let's party Daddy!'. Priceless.

We followed her suggestion and broke out the kareoke and champagne.

I will post pictures tomorrow.

Monday, June 13, 2011

A Ruby For Summer - National Post

We were quite surprised to hear that Summer appeared in the National Post!

I received a call from Don's aunt who is going to NFLD and her neighbour passed along an article on the province from the National Post. Low and behold, on the back of the NFLD feature was the story about the Ultimate Jet Set Event in April.


Unfortunately there were no pictures with the article.

Thursday, June 9, 2011

Speech - Check! Language - Check!

Yesterday, Summer had her Speech Language Pathology assessment. She was flagged in September through the school assessment that she had some deficits. Apparently they have all worked themselves out and she rocked yesterday's appointment.

The SLP said that she has absolutely no concerns with Summer's speech & language.

One of the best parts of the whole appointment was when the SLP pointed to a picture and said "this person is fast, and this person is faster, what is this person?" (the correct answer of course is: 'This person is fastest'.)

Summer said - all proud of herself: "This person is the WINNER!" (and technically of course the fastest).

Another appointment down... 3 more to go this month - orthotist, botox pre-clinic, and botox injections.

Wednesday, June 8, 2011

Dumb Struck

On Monday we had our annual Neurosurgery follow up appointment. We always have mixed feelings about this appointment, last year's was typical, this years was not.

The day did not start out typical. The 75 minute drive turned out to be 125 minutes, Toronto rush hour is never fun. Luckily we were only late for Summer's X-ray, time easily made up, then Neuro clinic was running 45 minutes behind. That IS typical.

The resident came in and gave Summer the once over and shortly thereafter Dr. Dirks and 3 of his residents came to discuss Summer's progress.

He started out asking if Summer was doing well developmentaly. Yes. Is she attending school? Yes. Summer was a little shy, as ususal, but then did start to 'perform' a bit.

Dr. Dirks then cut to the chase. He said the CT Scan showed that her shunt is not well placed and that it is likely not working.

You could have knocked us over with a feather.

He squeezed the bulb on the back of her neck and it failed to 'refill'.

How long has this been the case? We don't know. Summer has not had a CT since she was 6 months old, and has not shown any sign of intercranial pressure (vomiting, eyes drifting, decline in school performance, inability to concentrate, headache.)

Dr. Dirks reminded us that "we treat the patient, not the CT image". There is a small chance that she is able to manage to reabsorb some CSF (cerebral spinal fluid) on her own.

He also mentioned that her ventricle size is up, but that sometimes they reset at a larger size.

Our next step is to see Summer's ophthalmologist in July for an eye check-up, and she will look closely for signs of pressure. We will also have an MRI in September as Neuro would like to see her every three months for the time being.

Tuesday, June 7, 2011

CT Scan - HSC

I promised some pictures from Friday, here they are!

Squirt the Turtle gets his scan first

Following the CT we went to Sunnybrook to see Maureen at the Follow-up clinic for a quick visit and a tour of the new NICU.

Friday, June 3, 2011

Annual Neurosurgery Follow-up Weekend

In our usual style, we take advantage of our 'compulsory' trips to Toronto by coupling them with lot's of fun.

This year Summer's Neurosurgeon asked that she have a baseline CT Scan as it has been almost 4 years since her last one. It is routine that young children are anaesthetized for the scan as many have a difficult time keeping still. I insisted that we give it a go without putting her under and the nurses and radiologist were game.

We arrived at the department at 8am and did all the preliminary questionnaires, vitals, etc. at 8:30 we headed over to the CT Suite. The technician explained everything to Summer. She began to feel some real anxiety and tell me she was scared and nervous. The tech suggested that her Turtle stuffie get scanned first, so we strapped him on, and the table slid into position. Summer thought this was great, but she was still not willing to get on the table.

The tech and the nurse left the suite so I could try to settle her down. The threat of a needle didn't seem to be helping, so I tried a softer approach, this was even worse. Eventually, I used my 'counting strategy', this is where I begin to count to 5, and if I get to 5, there are consequences... like no TV, or the loss of a privilege. Had I thought her anxiety was completely true, with no playing it up, I might not have gone this route... but it worked like a charm. She hopped on the table, I gave the thumbs up to the nurse who came to 'tuck her in', and we got on with the show.

The CT seemed to take only seconds where Summer pretended to be a statue and hold very still. She snuggled her Turtle, and I held her hands. Before we knew it, it was over and they said the picture was clear.

We'll see her Neurosurgeon on Monday.

Barb came with me today as Don is still in Kingston. He'll meet us here on Saturday. I was grateful to have her join us and provide an extra diversion for Summer's attention.

We left Sick Kids at 10:30 and headed for Sunnybrook Hospital to see Maureen for a quick update visit. She had a good look at Summer and her movement and gave us some things to work on. As well she recommended it is time for Botox in her calf again. Not surprising given her recent growth spurts.

We ended our visit with Maureen with a tour of the new NICU. In a word - incredible. It looks more like an adult critical care unit with private rooms for all the isolettes, private entrance and hallway for parents, a beautiful parents lounge etc. It is wonderful to see that both the care team and patients are in an environment where they are not just 'making due with what they have' but really having what they need. It is hard enough to go through the NICU experience without tripping over other families, not having the privacy you need, not having the space you need. That has all been addressed and more.

We ran into a couple of nurses that were pretty special to us 4.5 years ago. It was great to see them again and to show off Summer's progress.

I took some terrific pictures today, but of course i left my camera cord at home... I will post them next week.

Now... onto more fun - Brooklin Festival tomorrow with Matthew, Eric & Emilie!
Sunday - Family gathering at the Bunton's!