Monday, August 29, 2011

Good Compromise

Today I received an email from Summer's Neurosurgeon's office. While he prefers that we still travel to Toronto for Summer's MRI on September 28th, he will make time to see us for a clinical assessment the same day (outside of his regular clinic hours). And, he will call us the following week with the MRI results.

So, still a mid week appointment - which means evening travel south, enduring rush hour in both directions, and only a couple hours of fun with the Bunton's, but thankfully, one less trip to the Big Smoke.

Friday, August 26, 2011

Summer is our Super-Star!

Today I received the final story and photo that will appear in Sunnybrook's Annual Report to Donors. I am really pleased with it.  My post about the event is here.
I hope they don't mind that I am posting it before it is officially published in September!

Tuesday, August 23, 2011

MRI Booked

I am grateful.
I am frustrated.
I am grateful.
I am annoyed.
I am grateful.

We finally received notification of Summer's MRI appointment at HSC. It will be on September 28th - a Wednesday.

We are grateful for the appointment, really. BUT.... when I asked the booking clerk if we could have a Friday or Monday appointment as it is easier for us to travel on the weekend, she said the appointment has been booked since June and I would have to cancel this one and wait for a rebooking. (seriously?) And because there are many calls to make, they only call to let patients know their appointment date a few weeks ahead. (four weeks notice?)

Background...They called in June to ask about Summer’s health status, and I asked at that time if the appointment had been made, and the person said we would be called with the date.

The person I spoke with today said we would be called a couple of days ahead with more details…

I can’t help but think they could reduce the number of calls they need to make, if they only called me once with all the questions and details, instead of three times.

Really, I understand they are dealing with high volumes of patients, and perhaps many patients in more serious need than Summer, but I find this frustrating, especially for families who have to make arrangements and travel.

We do this trip specifically for Summer’s appointments 6-10 times per year, taking these days as vacation or overtime lieu time.

I am hoping that Summer's neurosurgeon agrees to my request to have the scan performed here in North Bay.

Thanks for reading my vent.
I feel guilty for complaining.

Monday, August 22, 2011

Friday Therapy Day

Ann and Krista (OT & PT) visited Summer at Kids Camp to see how she is doing with her right wrist splint.

I love receiving these reports from Ann as they give me great material for the blog and some nice insight into Summer cooperating with adults, which I can assure you is hit and miss in our house.

Ann's report:
The visit was delightful as usual! Summer is such a character. I just love her.
Observations: the splint is a neoprene with a metal piece down the palmar surface moulded to fit her forearm, wrist and palm. Summer made a good attempt to get the splint onto her hand but needed some assistance to get it positioned properly over her thumb. The splint does a good job abducting her thumb into a functional position and it supports her wrist in slight extension.

Krista and I both noted that Summer is not keeping her index finger extended to the same extent that she was. She is able to flex it to touch her thumb and to help grasp objects.

Summer was using both hands during play when required. If she was able to complete the task with just one hand she used only her left. With cuing she would reach, grasp and release items with her right hand. She spontaneously and independently used both hands to separate duplo blocks - usually using the side of her right thumb to brace one block as she put pressure on an adjoining block with her left hand. She used both hands to hold open the heavy doors on our way outside allowing Krista and I through - minimal assistance was needed. She was able to achieve almost full elbow extension on the right. When riding as a passenger on one of the bikes outside Summer spontaneously held on with both hands - no reminders needed.

As usual Summer was talkative and very imaginative.

During play outside in the sand she was using a large bucket to dump sand. She readily dumps it to the left. To try to encourage some supination I helped her dump it to the right several times. She generally rested the bucket on the back of her right forearm to support it and used her left to tilt the bucket. She did not really use any supination of the right forearm in the process.

Assessment: Summer seems to be getting some better function back in her right hand. She seems to have more active control over the movement of her index finger. She continues to demonstrate good problem solving skills and uses her right hand functionally when needed.

Plan: schedule some visits at school in mid-late September. Investigate whether or not theratogs would be helpful to Summer's right upper extremity function - particularly with supination.

Friday, August 19, 2011

Our weekend with the Miller's

Last weekend we had a wonderful visit with Jeff, Elise, Emilie, Matthew, Eric and Kiki. The Miller's made the trek up from Brooklin on Thursday evening and we had an extended weekend of beach fun.

We met the Miller's 5 years ago. Elise approached me in the pumping room at Women's College Hospital and asked how my baby was doing. It happened to be the day that Summer was being transferred to Sick Kids to wait for her shunt surgery. When I told her, between the tears, what was happening, she nodded with a knowing look and told me Matthew, one of her twins, was also being transferred for the same reason. It seems odd now, but at the time, I experienced a huge sense of relief that someone else knew what it all felt like.

Flash-forward 5 years and there we are watching the children play together on the beach, splashing in the lake and soaking in the sunshine. I am grateful we have become family friends over the years and before each visit the kids get as excited as we do to see them.

Wednesday, August 10, 2011

Summer's 5th Birthday

Summer's birthday was on Monday, August 8th.

On Sunday afternoon, after we bid farewell to our friends Maggie and Brian who were visiting us from Kingston, we celebrated with 8 of her little friends and a few of their parents.

Brian and Maggie

We spent most of the afternoon on the beach. Thankfully this year we had fair weather and it was warm enough for the kids to swim, go for some tube rides, and a cruise on the seadoo. We got them good and hungry and headed up to have dinner on the deck. At Summer's request I made her a 'Magic School Bus' cake.

We sat down to 'do cake' and Summer says, "Wait! I forgot my birthday crown! Don't start without me!" (as if we could!). She ran to her room and donned her red 'birthday crown' she had from school. we were then able to proceed. I might also ad that the day included 3wardrobe changes.

Summer receive thoughtful generous gifts from her friends and our neighbours. She's one lucky girl.

I know it is cliche to comment on how fast the time goes by. But to be honest, there are times when I feel it has taken forever to get to 5, and sometimes not.

Tuesday, August 9, 2011

Summer Vacation Volume III

Two weeks of vacation activities is a lot to catch up on. Hopefully I can sum-up today!

Our first week of vacation ended with Don and I taking a 3 day annual fishing trip to Alder Bay with our friends Ken and Carmen. As in the past, the fish did not disappoint. We caught some nice spring and coho salmon, a couple of pinks too, as well as some halibut. Don even caught a turbot! Ken and Carmen were wonderful hosts and we really got to relax and enjoy each other's company.

On the Monday, Don, Summer and I headed to Campbell River to take 85lbs of salmon in for smoking and canning. We combined our trip with a visit to Selene's to spend the afternoon with her and her girls; Bethan, Rianan and Caitlyn. We ended the afternoon with icecream on the pier.
Don and Vinnie - Selene's beautiful rottie

We took a daytrip to Victoria to catch up with some new and old friends. We had lunch with Tracey, Rio, Nolan and Asher and were joined later by my brother Steve and his family; Jen, Chase and Arden. We spent the afternoon under the apple tree watching the kids play.

That evening we headed to Val's house. It had been at least 6 years since we saw her and her daughter Carling. We enjoyed a nice dinner and then took the doggies to the 'dog beach'.

We headed home at 7pm - getting to the top of the Malahat, and realizing we (I) forgot our camera.... back we went...

We spent our last couple of days kicking around with the grandparents. We took Summer to Nautical Days and she had her face painted like her kitty George.

We hopped on the plane very early on Sunday morning and headed back to Ontario for the final day of the long weekend. Barb & Laurie picked us up and we enjoyed a quick visit with them before heading north on Monday morning.

Monday, August 8, 2011

Summer Vacation Volume II

Our first weekend of vacation was followed by more visiting and reconnecting with Family. Don's brother, his wife Laura and kids Tyson, Sydney and Lily came from Idaho, their first trip to Comox. It was also our first time meeting Laura and the kids. Sydney and Summer became fast friends and were immediately inseparable. Lily entertained us with her beautiful smiles and kisses. Tyson is a terrific big brother and showed us how helpful he is with the girls. What a great family.

We had a quick visit with my uncle John and Auntie Anne. Anne was on the island visiting other family and John was competing at the Sand Sculpture competition in Parksville. They made a side trip to Comox to see us.

Friday, August 5, 2011

Summer Vacation Volume I

Following Summer's Ophthalmology appointment on July 12, Barb and Laurie took us to the airport bright and early on July 13th and we were off to Comox.

We arrived in time for lunch with Gramma, Grampa, Nana & Papa and quite a bit of rain over the first couple of days.

We also spent some time with Summer's cousins Chase, and Baby Arden. Chase loves Grampas car!

The weekend cleared and we enjoyed a wonderful visit with my friends Lana, Julie & Selene. Lana came down from Smithers, Julie and her family from Vancouver and Selene and her family from Campbell River. I was touched that they would all make the great effort to come see us while in Comox.

Selene, Me, Lana, Julie

The Kids!

Lana and I met in Kindergarten - BFF's

We spent Saturday afternoon/evening at Saratoga Beach, another haunt from my childhood. It all seemed a bit smaller (Alot smaller!) than I remember. Summer had a blast playing with the kids and we ended the evening roasting marshmallows and sharing lot's of laughs.

Tuesday, August 2, 2011

The Good & The Not-so-bad

We've been on a well-earned vacation to see our family in BC, and now we have returned home. I also took a wee vacation from the blog and will attempt to update everyone over the next few posts.

On July 12th Summer had her highly anticipated ophthalmolgy appointment at Sick Kids. The 'eye' part of the appointment was routine, however, since her CT Scan in June showed her shunt may not be working, Dr. Dirks, her Neurosurgeon asked that the Ophthalmologist confirm if there is any visible signs of papilledema . We know that confirming papilledema would confirm intercranial pressure but the absence of papilledema does not confirm there is no pressure.

Summer's ophthalmologist confirmed there is no signs of papilledema at this time. - so off we went on vacation.

That's the 'good'.

The 'not-so-bad' - Summer now requires patching for 2 hours per day on her good eye to make her bad eye work a little harder. Up to now we have been fortunate to avoid this. Summer has had a tough time with it. There been tears, arguing, negotiating, and bribing.

I guess it just seems 'not so bad' as we were pretty relieved at the absence of papilledema.