Give me a call!

On Saturday I will be doing my annual stint on the CHEO telethon. From 7pm to 9pm I man the phones, so, give a call!

We are all encouraged to bring photos and memorabilia of our experiences with CHEO. This is the collage I made this year.

CHEO saved my two little babies. Donate today (to CHEO or to your pediatric hospital) because you never know when you will need their help, care, love and support.

Thank you CHEO!

Country Crooner for CHEO

I am the mother of two beautiful "CHEO" children.

We are very fortunate to have the Children's Hospital of Eastern Ontario in Ottawa.

This amazing and wonderful hospital saved my eldest and my youngest children's lives. We will forever be grateful for the care and medial attention we got for both our children.

DJ had emergency surgery at 10 days old. We almost lost him. Multiple times. We still have yearly heart tests and specialist appointments.

Madigan was diagnosed with a sizable tumor even before she was born. She had surgery when she was 3 months old.

Today, at 3pm (est) we are participating in a local country station radio-a-thon. You can listen to our story online at http://www.y101.fm/index2.jsp

Even more importantly, please consider donating and helping CHEO help our children.

Pad Thai, Green Curry & Lemon Grass Tea

Five years ago I finally relaxed and felt like things would be OK. After a very hectic, emotional, and unbelievably stressful twenty-one days, we finally felt like our son DJ was "over the hump". With encouragement from the nurses in the NICU, my husband and I decided to escape the grips of the Children's Hospital of Eastern Ontario and go for a nice New Year's Eve dinner.

For the first time we took a deep breath and really felt like we could go, enjoy ourselves, and look forward to the new year. We were now confident our little boy, who we almost lost many times in those first 21 days, was going to see the new year...we were finally optimistic.

When we left, DJ was resting comfortably. Oblivious to the New Year's celebrations. But while we were tired and weary, we were also full of joy and happiness in anticipation for a great 2004.

We did not venture far - just to Sala Thai - a little restaurant down the street in a strip mall. For many, many reasons that food was simply delicious!

Now, every New Year's eve we celebrate with a family outing for a nice Thai dinner.

While this is a dark, grainy shot of DJ and I - our smiles show our happiness and joy.

The Fringe is an exciting and fun place to be and we cannot wait to see what adventures come our way in 2009.

We would like to wish everyone a very happy, prosperous, exciting and fulfilling new year.

Happy New Year!

XOXOX

Perfectly Imperfect!

DJ's heart is very different than a normal - ordinary - run-of-the-mill - heart. He has a very special heart. An ordinary heart is illustrated on the left, and DJ's special heart is on the right of the diagram below. You can read more about DJ's unique medical condition here, and here, and here.

DJ had his annual heart tests today. He was such a trooper. The ultrasound, EKG and ECG went very well. All 5 of his heart abnormalities are either growing with him - that is what we want - or even improving. This is such wonderful news. DJ is currently sporting a heart monitor halter for 24 hours - or, as he calls it, his Heart Robot.

In the waiting room with Great Grandpa.
Getting ready for the cold goo!
Wired for sound.

A boy, his robot, and a perfectly imperfect heart!

Inappropriate ER Behaviour...WTF?!?!?!?

Ander has not been feeling well since Monday. I called the doctor - he was completely booked and suggested the After-hours Pediatric Clinic. Got an appointment for 7:40 PM. The nice doctor determined Anderson had a serious ear infection. Then upon further examination the doctor started to use the terms "toxic", "unresponsive", "not typical or appropriate reaction", "alarming", "extremely high heart rate", "laboured breathing", "low oxygen stats".... he then gravely told me that my little Pander-Bear, as a best case scenario, may have pneumonia or some sort of infection, and that we should head straight to the children's hospital. He even inquired if we wanted to go by ambulance.


With all the dire medical terms colliding in my head, we rushed right over to CHEO.


I think half the population of Ottawa was in the CHEO waiting room! Standing room only.


I will never bad mouth the Children's Hospital of Eastern Ontario. If you frequent The Fringe, you probably read about how this hospital preformed life-saving surgery on my son DJ. And you have read about the wonderful care and attention we have gotten at this hospital. I also wrote about how this wonderful hpospital took the time to really explain my son DJ's rare condition. You have also probably read how even before Madigan was born we knew she would need surgery and medical intervention form this wonderful hospital. You may have shed a tear when you read about my friend Donna and her son's time at CHEO. And if you have been around in the last week, you read how much I do every year to help raise money for this amazing hospital.


You will NEVER hear me speak poorly the Children's Hospital of Eastern Ontario.


But everything else, and everyone else we encountered in the ER is fair game.


Firstly, I understand many people are having trouble finding a doctor in Canada. It is a well-documented issue. But people, please, why bring your child to the ER, at night, because he or she has had the sniffles for over a week now? WTF?!?!?! Go to a walk in clinic if you have a deadly fear of the common summer flu/cold.


Further, if non-emergencies were removed from the equation then the wait time would be dramatically shorter.


Secondly, if one child is sick, why bring the whole "fam damliy" to the ER? I can understand it if you had no other option - but the frigging number of families there last night was unbelievable. One family consisted of mom, dad, child with a sizable goose egg on their forehead, 3 cranky siblings and a grandmother. WTF?!?!?! HELLO PEOPLE...one parent escort child to hospital and the others stay home. Easier on EVERYONE...


Further, if your 4 year old will not sleep because their head hurts and you have no idea if they fell in the recent past, then why would you and your hubby bring your 2 month old baby to a hospital. GERMS people...why bring a healthy baby into a germ infested hospital? WTF?!?!?! Unnecessary risk!


Thirdly, if your child is out of control and running around and smacking into other people and screaming at the top of his lungs - take him out in the hall, or even outside. Other families would greatly appreciate it. In particular, that little sweetheart of a gal who split open her lip and wants to cuddle in Daddy's arms and not have YOUR son running into her and making dinky-cars drive up her arm. On top of that, your hyper, loud, child probably did not need the chocolate milk, cookies and chocolate bar you fed him in a span of 5 minutes. Especially since you were using the ER to get a blood test done instead of going to the clinc during the day. WTF?!?!?! You may also want to read point number two. Your mother and sister's rude, loud and critique of the wait time were uncalled for...most people in the waiting room have work or school in the morning... not just you!



Fourthly, there are job search engines out there. If you want to get all your work experience and accomplishments broadcasted, please visit http://www.monster.ca/ or http://www.jobshopottawa.com/. An ER chance meeting with a superior is not a job interview. I for one, do not wish to hear you go on and on about your last 10 years in the Federal Government. For the record, Revenue Canada is a huge department - The "Do you know so-in-so" game followed by a huge long plug on how you worked with that person is not called for... WTF?!?!?! There is a time and a place for obnoxious name dropping, project-accrediting and the ER room is not one of them. No. Seriously. I do not care who you know and what you have done in the last 10 years. But I must say, you did try hard to close the deal with a fake chuckle and " Well, we should exchange cards, I would love the opportunity to review my CV with you - I really think policy management is where I want to go with my career".

The fifth point I would like to make is that bottled water and juice sold in the ER room should not force you to take out a second mortgage. $2.50 for a little bottle of water? WTF?!?!?! And if a nurse recommends keeping your son hydrated with lots of water - please have a paper cup so that Mom can use the water fountain.

Finally, the winner of the "Most Inappropriate ER Behaviour" award goes to the automated parking lot attendant. Yep! I know, you are thinking WTF?!?!?!. But the big metal box, with the squeaking, irritating female voice wins hand down...or is that parking stub down.

"You owe T-H-I-R-R-R-R-teen dollars. If you have any coins, please insert them into the coin slot. "

cling cling cling

"Thank you. Please come again."

WTF?!?!?! WTF?!?!?! WTF?!?!?!

Please come again to the ER. As in "hope to see you back soon...in ER". WTF?!?!?! Listen, the last thing I want to do, or my child wants to do, after waiting 2.5 hours to get registered, 2 hours to be called to, well, wait in another room, and another 1.5 hours to see a doctor, is think (or plan) on coming back to ER.

OK. Rant over.

As an update, my little Pander-Bear was so good last night. He made Mommy very proud with his bravery. He is now on antibiotics to clear up a nasty ear infection and the doctor (Dr. McCutie for sure) is pretty sure he has a case of pneumonia. Any healthy, get-well vibes you can send would be appreciated!

Three Reasons to Call

"Your son is very ill. We suspect he has a malrotation of the intestines. He will need immediate surgery"

"The surgery went very well. We preformed the Ladds procedure, along with placing a shunt to bypass the duodenum. He is doing very well and is off the ventilator. During the operation we discovered many anomalies regarding the position and function of many of his internal organs. Based on his multiple heart and intestinal defects, the presence of multiple spleens and the other abnormalities, we have determined he has a rare condition called heterotaxy. His syndrome is classed as Left Isomerism with Polysplenia. "

"Well, , Anderson took a good fall, but everything looks fine. No broken bones. His fingers will be sore and blue for a few days. "

"During the ultrasound we found what appears to be a tumor in the baby's belly. We cannot tell for sure, but it appears to have density and structure. We will be referring you to a Neo-natal specialist for further tests".

"Your little girl made it through surgery with flying colours. She is now resting comfortably in recovery. The tumor was very large, over 7 cm. It was attached to her left ovary and had placed so much strain on the fallopian tube, that it tore it off. We removed tube, ovary and tumor. The tumor came back negative and non-cancerous. "

This weekend is the 25th Telethon for the Children's Hospital of Eastern Ontario.

DJ, Anderson and Madigan are only 3 of the many reasons why you should call this weekend and make a donation.

You can also go on-line and make a donation. Click here!

I will be on-set answering phones on Saturday from 7PM to 9PM (est.) on CJOH. Tune in and donate what you can. Every little bit donated helps CHEO help our kids.

Thank you.

We Interrupt Your Regular Blog Reading

For live media coverage!

The Storrie Trilogy will be interviewed on The BEAR radio station at 10 AM eastern savings time.

We always participate in the Children's hospital radio-athon and telethons...so, if you are by the computer - check it out..

http://www.thebear.fm/

and better yet...make a donation to help the hospital who helps our kids.

Thanks...now back to your regular blogging activity!

Abracadabra!

This morning while feeding Mags her cereal I was humming a little song. DJ was munching on his toast and he started to hum a song. It was so cute. Here is the conversation that followed:

- That is awesome humming DJ. Mommy could tell it was Frosty the Snow Man. Good job Buddy!

- Thanks Mommy. You heard it because you have ears.

- Yep. My ears love hearing you hum, sing, talk and I am always here to listen to you.

- Some people do not have ears.

- You are right. Some people do not have ears or they have ears that do not work very well.

- I am glad I have ears. And you to. And Anderson and Daddy, and Madigan. Some people have ears that got sick and now do not work and God made some people with no ears and some people cut off their ears. Right Mommy? And some people do not have any legs.

- You are right.

- Some people have accidents and hurt their legs and some people get scratches and sometimes God makes people with no legs. How do people with no legs run Mommy?

- Well, some people get artificial legs made for them to help them and some use a wheelchair and some use crutches.

- Oh. You know Mommy, maybe the doctors at the children's hospital can learn magic. Then they could use magic and medicine to help kids with no legs. Kids should have legs. I am happy I have legs. When I go to the see Dr. Van Stralen next week I will ask her if she knows magic.

****My heart almost burst! Would it not be wonderful if by waving a magic wand we could take away all the hurt - physical, emotional, mental or spiritual.

I remember the feeling I had when we finally realized that DJ would be OK. It was December 31, 2003. We had a meeting with the doctors in the NICU. DJ's condition was now stable and he was going to be OK. We were not sure what the long term prognosis was going to be, but at that moment, the team of specialists working on DJ's case had most definitely waved a magic wand before us. That evening, we relaxed for the very first time. We even left the hospital and had a wonderful new year's eve meal at a local Thai restaurant. What a beautiful start to the new year!

We have kept up our annual tradition of Thai food on new year's eve. This year we shared a wonderful meal with our friends David and Dawn. And one of my prayers as we start this new year is that, if possible, they experience the magic of conceiving a child. And if they cannot, may the magic wand of acceptance and love wave over head and allow them to accept their situation and help their marriage continue to grow and flourish. I love them both and hope for the best for them.

Call Made for Maddie - Update

CHEO just called and Madigan will have her follow-up ultrasound on November 12.

Any positive vibes that can be sent our way would be appreciated.

Thanks in advance my dear friends!

PS - I am hopeful that the ultrasound will distinguish between cysts and mega clumps of sand in her belly!!!!!