Just an update!

So Yale had clinic in Toronto on thursday April 30th. it was uneventful as usual (its a new usual, but one I'm getting used to) But I just wanted to clarify for everyone about Yale's lung issues. as previously stated, his left lung has basically no blood flow to it. This was clarified that the lung is actually being perfused and can grow as Yale does, but he doesn't get oxygen from its use. The main worry was with 90 of the blood flow going to his right lung, that it would be straining the right side of the heart. Thats what they went into the cath lab looking at. They found the pressures to be well in the range of what they would consider normal. These pressures will be checked continually during biopsies, however, if he his capable to handle the unbalanced flow already, he will only get more and more used to it. Dr K said basically this will have no effect on Yale or his development, unless he has hopes of being a professional athlete, to which dad replied, "you don't need great lungs to be a great golfer!"

So thats our little update. Funny how it has a good spin on it? I think thats how things might be from now on. Well I can only hope!

sorry its been a while

I meant to update this blog once I found out more about the results of Yale's cath to look at the pressures of his lungs, and the blood flow to his left lung. I really don't have much information really. Dr Redington told us after the cath, that there was no need for intervention at this time. But what it all means in the long run, I have yet to ask my questions. However, Yale has 0 rejection, and his next biosy is scheduled for July 24th. Mirna just told me that they'd watch his pressures every time he has a biopsy to make sure nothing reached panic levels. i take my cue from the professionals, and if they're not worried, I'm not.

On a nother note Yale has been progressing and developing at an even faster speed. Its almost as if his physio therapist comes in, tells us what the next things for his development will be, he hears her, and does it all within the day. Its hard to think Yale was very much still an infant only 4 months ago. his gross motor was only at around 6 months, and now he is almost all caught up. if he learns to cruise in the next month he'd be back on schedule. The later side of schedule, but still in the range of normal. Its amazing to see him standing for long periods of time without any assistance. He has yet to really take steps, but I'm sure it'll happen before the week is out...

Now onto the prayers.... a good friend of ours is back in the CCU.... little Abby Knight has a viral lung infection. She was wtih us in the CCU when Yale has his glen. She is scheduled to have her glenn soon, but now they'll pretty much be living in Sick Kids until she can fight off this virus, then in for her glen. (edit: Abby is now home, glen has been pushed back until she is stronger)
Owen Veloso... who has has a scarier road than Yale is going in for his glen on Tuesday. This little guy FIGHTS for his life, and I think some prayers would be greatly appreciated!
And of course, little Lillian who is still waiting at Sick Kids for her heart.
And never could we forget Sophia, who is still waiting, but is finally in an apartment in toronto. Some sense of normalcy must be great for them, but I'm sure Sophia's new heart and a flight back to New Brunswick would be even nicer!

thanks everyone! we know these positive vibes and prayers really do help!

impromtu trips to the cath lab

Well... the shoe has dropped. Luckily, we've been through worse, but I've just recieved a phone call from Dr D. Yale is going into the cath lab this Thursday. When they were in there last week they noticed high pressures in his left lung, and Dr C tried some dialation with little to no results. This is something we've known about ever since Yale's transplant. unforunately its gotten much worse. Sooooo, Yale is going to go for an MRI Thursday morning, than straight to cath lab afterwards. They are first going to see if some medicines can help to dialate the veins going to the heart, and increase the blood flow both to the lung and back from the lung to the heart. If not then they hope to be able to do some dialation and stenting. It was frightening when Dr Dipchande said that they were going to do all they could to salvage Yale's left lung, but if not, she has about 10 transplants that a living with one lung. Very frightening indeed, but we've been through so much, this is just another challenge for us.
So prayers are requested that the flow isn't totally compromised, and that Yale's lung can be slavaged.
I'll update as soon as we know.

edit for lexi

It was just a bruised brain, not a stroke. Still not good, but at least a bruise can heal. What a little bugger she is, like she hasn't scared her parents enough!

Slacking off

Okay everyone, I know I have totally been slacking off with this whole blog.... but really... there isn't all the much to report :) We've officially made it THREE MONTHS with out an admission.... Yale is doing great. We've been working with Occupational Therapy to help him with his development.... its going wonderfully.... When Melissa first came, Yale wouldn't lay on his belly and he could move or do anything and could very sporadically sit unassisted.... now he is rolling all over the place and will be crawling any day now. He continues to get up onto all fours and rock so I know its only a matter of time! And my favorite milestone that I've been itching for is.... drumroll please... Yale can now hold his own bottle!!!!! Wow... I never thought it was going to happen.

So Yale has a biopsy at the end of March...and then if everything goes well, we'll be down to monthly visits to Toronto.

Anyhoo, I've really noticed that this blog and all you readers, have really helped when I've asked for prayers and positive thoughts. Well, As some of you may know, a friend of ours, Sophia Bossenberry is still awaiting a heart transplant. Her and her parents have quickly approached the one year wait while being in the hospital. This sounds extremely terrible, but i think Sophia's wait has only been so long because of how well she is right now. As all of us know, that can change in an instant. So I'm going to ask all of you that you please pray for Sophia's heart to come and for her and her wonderful family to please get back to some semblance of normalcy.

Update: Lexi was home and doing great with her parents, but I have just learned she was life flighted to Sick Kids with what might be a stroke. I'll update when I know more!

thanks so much.... and for all the help... some pictures of Yale



Okay and for family.... if you like that family portrait...just be patient...:) don't copy and print... you're probably getting the actual version *ahem mom*

till next time!

Alexis got a heart today!

I just wanted to thank everyone that prayed for Alexis to get a heart. I just recieved the wonderful news that she go a heart today at 1:30 and is doing excellent! I am just overjoyed! Such a young family shouldn't have to go through so much, but I am sooo glad that they have a happy ending now too!

Hey everyone!

So Hi everyone...I know I haven't really been keeping up with the updates...but here I am :)

Yale is still doing amazing. He had great results from his last biopsy and doesn't have to have another until the end of March YAY! We've been having weekly visits from his occupational therapist Melissa. Yale is really starting to like her. (sorry Maggie, but he feels good now so playing is just playing to him not work)
He's now rolling all over the place and getting into all sorts of stuff.

So I'm putting out a prayer request for all the sweet little babies at Sick Kids still waiting for a heart.
Especially one little girl called Alexis. Lexi was in stepdown with Yale while he waited for his heart. She's been on milrinone as well and just hasn't been doing very well. She had an event and ended up in the CCU. She is back up on 4D now, but isn't doing well, she has a bug in her picc line now, and has been battling RSV.
Lexi is the sweetest thing. Her and Yale used to talk back and forth across the room, and we really wish she'd get a heart. She's fighting really hard, but her mom is worried she's just not going to have much fight left in her. Please pray for Alexis and her mom Raena, and her dad Garrett that they find a heart soon, and that Lexi doesn't have to suffer much longer.
Here is a picture I stoll from facebook :)

Raena is having a hard time watching her little girl go through this. I know how much you all have helped me and Yale, and I definitely think your prayers could be used to help this family. thanks a bunch