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.