Useful Math....

Cutie Bean!

Benny Bean being cute. :)

Harrison Helps Pampie....

Mow...the uhm...road?

Hats are fun....

Ben wearing Nanny's hat, chillin' on the deck and enjoying Canada Day.

Happy Canada Day

Harry's First Tricycle

Today I dug out Victoria's old tricycle and helmet for Harrison. He loves it!!

He also loves Victoria's old pink helmet lol.

Brother and Sister

Great Job Victoria!!!

Congratulations to Victoria!! She graded and will be in Mr. Collins grade 5 class in September!

She also had the best report card!!! Almost all A's, just 2 B's!! Great Job Tori!!! We are proud of you.

In 20 Years From Now....

Victoria will be in Barbados driving a Ford Focus....according to this random paper I found while cleaning out her school bag. Too cute!

I hope she has room in her Focus for Mum!

Victoria in Barbados

Tori hanging out in front of Bert's this past February during her trip to Barbados with Pampie and Nanny.

Hey Look At Me GO!!

Harrison Builds a Tower....

and then knocks it down!

Apparently he finds this HILARIOUS!

Random Harrison

A random video for daddy of Harrison running around Nanny and Pampie's yard in the rain.

Ben taking it easy....

HEY!!!

How'd you get a drink?????

The Calm Before the Storm?

Today was a confusing, yet happy day. We had several follow up appointments at the IWK. We saw plastics, ENT, and ID to name but a few.

The doctors are very pleased with Ben's progress. His weight has FINALLY hit the 15 percentile!!! This is great news as this means we don't need weight checks every two days!!! Woohoo!!!

The next few months should ( I can emphasize the world SHOULD) be fairly quiet. Then we start the next rounds of surgery.

Ben will start with at least one scar revision with plastics. He will also need another follow up bronchoscopy. Then around his first birthday/Christmas we will have his palate repair and any remaining scar revision surgery as well as tubes in his ears.

We go back in 2-3 months to start the preop work up for the surgeries.

Fingers crossed the summer is quiet and we can enjoy some quiet time together.

Harry Monster

 Harrison decided on a brand new pair of blue "monster" rain boots....he and his sister found this rain coat to match and he HAD to have it!!!

Harrison models his new coat and boots!

Dancing Queen

Return To Blogging

The past month has been horrid. I ended up taking a break from blogging as I just couldn't relive everything all over again.

We ended up being admitted to the IWK 5 weeks in total. The first week was on observation and to figure out what was up with Benjamin. By the end of the first week it was clear he had osteomylitis of his jaw. As from our previous post they attempted discharge and home care but that didn't work so the remaining 4 weeks were spent in hospital on IV medications.

I ended up having Harrison with me for the last 3 and a half weeks once a bigger room was available. It was fantastic having him there but it is hard enough to be in hospital with one child let alone a second who doesn't need to be there and doesn't really get what is going on.

We were finally discharged last Saturday on just his reflux medications. The ID doctors don't feel oral antibiotics will do much/if anything at all.

As of right now we are being seen 4 times a week by someone (either the family doctor or pediatric doctor here or one of the MANY clinics in the city) and having weekly labs done to follow his inflammation markers. Should ANYTHING show up at anytime it means readmission for at least another 4 weeks of treatment. *SIGH*

So that's where we are at. The boys both have immunizations at the end of the week so as always the overwhelming stream of visits continues....

Starting To Feel Like The Wold`s Largest YoYo

      Now I know how a YoYo feels. This has been one of the most frustrating experiences!!!

We were discharged late Tuesday. I had met with the continuing care nurse, had a bag of supplies to take home and had enough of Ben`s medication for 2 weeks. It was my understanding that home care was to arrive between 2000 and 2100 to give his medication.

Tuesday night NO one showed up!!! I waited until 2200 and called the only number I had for home care. It was a useless number that was only answered from 0800-1600 each day. I eventually had to give in and wake the other kids up and leave them at my mum`s. We went to Valley Regional where the story only got worse. The nurses were unable to flush the PICC line and were also unable to get blood return. After many failed attempts a peripheral IV was started and Ben finally got his medications. I was instructed to call home care to see if they could come give Ben`s next dose of medication. I tried all morning with no luck. By noon I decided to head back to Valley Regional so his next medications could be given. Before I left I called Lynne in Dr. Hong`s office to explain our situation. During the 5 hour wait at Valley I heard back from Lynne and it turned out Dr. Hong wanted us readmitted. The nurses at Valley were unable to give his medication, somehow pulled out the one IV he had and were unable to start another.

Once arriving at the IWK the nurse tried the PICC Line and it worked PERFECTLY!!!!!! Flushed easily AND had great blood return. We were discharged again Thursday. This time Home Care was to show up. Which they did however once again the PICC line would not get blood return. After over an hour of trying and several phone calls to the IWK the home care nurse gave up. I made arrangements for Harrison and Victoria then took Ben back to Valley. They did not want to see him and thought we should go right to the IWK. Which I did. We were once again readmitted through the Emergency department and Dr Bezuhly would be following Ben.

So here we are again. The PICC functioning to give the medications and still where it was according to an X-Ray. VRH and home care won`t take him without blood return, however the doctors don`t want to mess with the PICC or try a new one as that is something poor little Ben does not need right now. So we are here...for how long we don`t know. Over the weekend for sure and probably the holiday.

I just want to go home :(

Ducks in a Row...

I have my ducks in a row....the doctors have their ducks in a row.....home care however is another story!

Yesterday was beyond frustrating. I was promised we could go home...but alas no...

Ben had to have his PICC repositioned, which also entailed yet another X-ray. Ben's medications have been switched to stronger ones twice a day but they make him sick, ID checked him out via swabs to make sure he wasn't really sick, so far all have come back negative. Hopefully that means his isolation precautions will be lifted this morning. We are going stir crazy in here!!

Last night Ben had a bad med line which caused the connection to his PICC to blow and bleed all over me. I got my first experience clamping and covering a blown line..yay me. At least I am confident I know what to do if it happens at home.

So now we are sat here waiting....with the same promises as yesterday...that we will get to go home and will be there sooner rather than later.

Sigh....

Our "Home" Away From Home...

Thank You Child Life for finding me great toys to use while I'm here :)

Finally feeling up to having some play time :)

Our Room

Ben's bed (with his bouncy chair in it)

My so called "comfy" chair:

My bed and fridge:

The View....

Bathroom door:

TV and closets

Bathroom view one

Bathroom view two