Alexis's Space

Today is one year since we ran Lexi off to the hospital after her Baptism.  What a year she’s had.  It’s hard to believe that this has all happened when we see her running around the kitchen today.

We just received the results from her fourth biopsy and she passed with flying colors.  There is no sign whatsoever of rejection, of her new heart.  The next biopsy is now way off in May, because she’s doing so well.  She’s starting to wean off the blood pressure medication too.

She loves her food.  Especially gravy covered ones.  She is growing quickly and has made up everything and more from those lost four months in the hospital.

She’s still a happy, smiley little girl most of the time.  Hardly ever complains and plays constantly.  She loves to stroll “and run” from one person or toy to the next.  She’s become a very snugly little girl lately too.  Lots of hugs and smiles.

I’ve loaded some pictures from her Birthday.  We would like to say “A BIG THANKYOU” to all who attended to make it a very special day.  There are some too from Halloween and a couple today at Oma & Grandpa's house.

Take care everyone.  Thanks again for all your thoughts, prayers and support.

Doug

It’s been a while since we have updated Lexi’s site.  Not much has been happening until last week.  She has been doing very well.  Eating well and gaining weight till she is now about 20 pounds.  She’s a happy little girl most of the time.  We do hear from her when she’s hungry or has blow out in her diaper though.

Last Friday Lexi had her third biopsy and the results where fantastic.  To this point there has been absolutely no sign of rejection of her new heart.  I think I’ve said before that this is very unusual according to the Doctor’s.  They say there is normally some sign, even if just a little.

As a result she is now taking only three medications (down form 8 or 9).  Two are a combination of rejection medication in a relatively low dosage and one is for high blood pressure.  Since her new heart was from an older child it is beating very strongly and the rest of her system has still not adjusted to the new high flow.  The remaining medications are relatively low risk so we are really happy with that.  Who knows, as time goes on she may need even less.

The trips to Sick Kids are now down to a monthly visit because Lexi is doing so well.  It’s taking the pressure off Garrett and Raena a little and they are starting to settle into a more normal life style.  Lexi is really good about taking her medication and as I said she’s a happy little girl most of the time.   To look at her, if you didn’t know what she’s been through, you would never know she was a very sick little girl.

I find it amazing that her attitude has not changed with all the crap she’s gone through.  On July 19th Lexi will be a year old.  At the rate that she’s improving with her mobility and sense of her surroundings I think she will be close to caught up by then.

I’ve loaded a couple of pictures we took last week in the swing in the yard.  I’ll try to add a few new ones every now and then.  We’ll probably do another update around her birthday.  She might not have her next biopsy by then but we’ll load some pictures of her birthday party.  It's gonna be a big one!!!!

Doug

We have good news!!!!!!  Lexi had her second biopsy last week and we got the results yesterday.  There is no sign of rejection of her new heart at all.  That means she doesn't have to take her steroid medication (prednisone) any longer.  It has a history of nasty side affects so we are happy that it is gone.  She can also stop taking another one because she was on the steroid medication.  The Doctors have reduced one other rejection drug and over the next six to eight weeks it’s likely they will be able to reduce another one.

The Doctors have said that they are VERY happy with her progress because it’s normal to show some sign of rejection.  She also had another echocardiogram done yesterday to see how her heart is functioning and everything looks great there too.

Lexi also had another cat scan to see how the blood pool in her head is doing.  Much to everyone’s surprise, it's 95% gone.  It has reabsorbed very quickly and as a result she doesn't have any more neurology appointments.  Another medication that she was taking for that, is also gone.  Now she’s down to a small handful of syringes twice a day.

As I said the last time I wrote, Lexi found her appetite again.  She’s been taking her bottle and even attacking it when she sees it.  She’s eating pablum, fruit and vegetables a couple of times a day too.  She is now over eighteen pounds (8.1kg) and gaining steadily.  Her muscle tone is increasing every day and she’s getting much more active, bouncing in her exersaucer and sitting in her bumbo chair.

The trips to Sick Kids are now down to every two weeks, so life can begin getting a little less hectic for Lexi’s family.  Raena & Garrett moved out of Ronal McDonald yesterday.  So now it’s home in either Roseville  or Southampton.  There are only two places to lose something now.  It’s been a real frustration for Raena & Garrett because every couple of days they have been picking everything up and moving it to the next place.  They’re looking forward to a little more prolonged routine in their life.

When I look at Lexi now I don’t see any sign of what she’s been through.  She looks, feels and acts just like a normal little girl.  Way back when we first talked with the transplant team, for the first time, they said that Lexi could live a “normal” life after her transplant.  I recall thinking, how normal could that be.

Lexi is getting on with growing up and hanging out with friends and family.  So this seems like a good place to stop the semi-regular updates for Lexi on this blog.  We will keep it running to update you with the usual important life events that children have so check back from time to time.

All of Lexi’s posse want to say thank you for all yours thoughts, prayers, and support from all over the world.  We’ve heard from places like France, Germany, the United States, Western and Eastern Canada.  It’s gratifying to know that our updates have traveled so far and touched so many people.  We also want to mention the wonderful care and attention the amazing staff at Sick Kids have given Lexi.  They truly do work miracles and they are really nice people to boot.

I've uploaded a few new pictures below and I'll add some from time to time as well.

Doug

Lexi is back home again and feeling much better.  While at Sick Kids last week we found out why Lexi was feeling so bad.  A blood test showed she had contracted a really nasty flue called the “roto virus” ??.  It really dehydrated her and as a result the blood pool in her head began to aggravate the outside wall of her brain.   So not only did she have a very upset stomach, she also had a pounding headache.

With the help of the staff at Sick Kids she fought off the virus and feels much, much better now.  She has found an insatiable appetite for the first time since her transplant.  We are getting lots of smiles now, mostly from behind her bottle.  Of course there are lots of loaded diapers now too.  It’s so good seeing Lexi attack her bottle again.  That hasn’t happened since last summer.

The Doctors will follow Lexi now as she makes her regular visits to Sick Kids for clinic.  They feel pretty confident the blood pool will be reabsorbed by her body and if her appetite is any kind of a sign, I’d say its well on its way.  Now she can get on with growing up again and we’re really looking forward to that.

I’ve loaded some pictures from last weekend at Great Grammas' house in St. Clements and some from today with her bottle in the foreground.

Doug