Homemade...

 Evynn is now 17 months old and has enjoyed the last couple of months at home.  She thinks she is so funny climbing the stairs when she knows she shouldn't.  She had another sedated echo which showed no change, her valve is still leaking and still needs a heart transplant, but she is stable and growing.  Evynn is still to weak to learn how to stand or walk but that doesn't stop her from getting around.  She finally had her g-tube size changed, which means we are now experimenting with homemade purees.  This has been a lot of trial and error.  It has required careful analysis of all the nutrition in common foods to maintain her high calorie diet.  She has been tolerating a higher volume of food in each feed, which has allowed her to be free from the tube & pump for more of her day.  Her SickKids team is happy with her stability right now (things can in an instant).
We ask again for thoughts and prayers for another little friend waiting at SickKids for a heart as well... she is not doing as well...

Admitted again..

Evynn was admitted to SickKids Sunday after not being able to tolerate any of her feeds.  They now have reduce the concentration of her formula & put her on continuous feeds. She gets 30mls per hour.  The vomiting has subsided but she still has moments of complaining about her tummy. Tomorrow she they will do a gastro emptying study to see how well her tummy is working.  We are also waiting to have a sedated echo.

Waiting Again...

Evynn was discharged from SickKids on Thursday last week.  Her random discomfort seems to be under control with the increase of her reflux medication.  She continues to vomit and retch daily.  There does not seem to be a pattern to what will make her vomit, some times even offering her food will make her retch.  After searching for every reason for the vomiting and changing her formula to a more 'broken down' kind, the consensus is that she is just showing more CHF symptoms.
The transplant team, cardiologists and the surgeons discussed Evynn on Monday and decided to re-list Evynn for a heart transplant.  She is considered a moderate - to high risk transplant because of her condition, past surgeries and sensitivity to other tissue types.  So we wait....

Re-assessing for transplant...

Evynn is being re-assessed for transplant again. She put on 'hold' because her valve had improved but that was only temporary. She is not tolerating her heart condition. She is currently being put through a series of blood test & ultrasound, the surgical & transplant team will discuss her on Monday.

Back in...

Evynn was admitted to SickKids again Thursday evening because of abdominal pain, vomiting and trouble digesting her solid foods. She still seems happy between the intermittent episodes of discomfort. She has had different ultrasounds and X-rays to determine what's going on. So far doctors are still unsure.

On happier note... We are pleased to say that one of her little boyfriends received his heart transplant and is doing great!

A Step Backward...

Evynn had her sedated echo on June 6th, the results show that her tricuspid valve has again begun to leak.  It is currently a moderate leak, is not as bad as where it was at the beginning of the year, but it has definitely gotten worse in the last 6 weeks.  Her cardiologist has left her on 'hold' for a transplant.  So for now there is still no plan...

First Birthday!!!

Thank you to everyone for all the prayer and support over the last year.  It has been a year full of trails.
Evynn enjoyed her first birthday surrounded by friends and family at a Carnival themed party this past Sunday.  Although the humidity caused Evynn to leave her party early, she was still able to enjoy seeing everyone.  Thank you to everyone who donated to SickKids as a birthday gift, we raised over $1000 for the Cardiac Critical Care Unit!
Evynn has another sedated echo on June 6th.  Until then she remains on 'hold' for the heart transplant.  As of right now there is no plan for Evynn's heart.  It is a wait and see game.  She has been stable and doing well on the current medications.  Her g-tube has been causing some issues though, it was pulled out part way only 2 weeks after it was inserted and now will have to be replaced.

WOW!!!

Since the beginning of the week, Evynn has been feeling better. Her cardiologist is still unsure why she had declined so much, but assumes it was a combination of a virus and CHF. Evynn had a sedated echo on Thursday to investigate whether her heart was getting worse. The previous sedated echo (a few months ago) showed that Evynn's tricuspid valve was 'severely' leaking and was to blame for needed a transplant. The echo reported her leak is now only 'mild' and for now doctors are considering whether Evynn will even need a transplant! She may instead be headed for the original 3rd stage surgery. Still a very uncertain journey, but incredible news for now.

Evynn's Update

Evynn is staying at SickKids until the doctors can rule out a cold virus, bacterial infection (like last time) or if her body is no longer tolerating the medications and they need to be adjusted. They are keeping Evynn on continuous feeds to keep small amounts of milk in her stomach at all times to see if this will help stop the vomiting. She has lost a little weight but is still generally her happy self, as long as she's safe in Mom's arms.

April Showers bring... Evynn back to Sick Kids

Evynn and Mom are back at Sick Kid due to an unexplained fever and increased CHF (Congenital Heart Failure) symptoms. She is in good hands and doing okay for now but could use some prayers.

Evynn and Grandma at Easter 

Showing off her Bravery Beads.

Evynn has received a bead for every injection, blood work, x-ray, surgery etc. she has endured...

Home Again.

Evynn is home and feeling better.  She is doing well considering... Evynn pulls herself to stand, feeds herself 'baby mum mums', (although she refuses to eat any solids off a spoon) and continually smiles.  Her cardiologist has decided it's time for a G-tube instead of Ng, which will take a few months to book.
We are also asking for prayer for her little boy friend at SickKids who is also waiting for a heart...

Infection and Antibiotics

Doctors have found 'streptococcus pneumoniae' bacteria in Evynn's bloodstream. Doctors are not sure why or how she got this because it is rare. They are growing more cultures to get further information. Evynn is feeling better now after receiving antibiotics. Evynn and Carol will be staying at SickKids to continue IV antibiotics and are hoping to go home sometime next week.

Fever and back in SickKids

Evynn has been readmitted to SickKids because of a fever and vomiting. Her fever has hit 40.3 C or 104.5F. Her white blood cells are high.  The doctors are not sure what's up so they are looking for an infection somewhere.

 Evynn this past weekend enjoying a family gathering.

Evynn Dec.&Jan.

Evynn helping Grandpa read his paper.