Thursday, June 30, 2011

Update.

Raquel is doing very well of late.
She's crawling around and acting like as normal of a kid as we can hope for.
She has a couple blisters healing on one of her knees that are 5 days old.  It's interesting watching her crawl around and changes to tripod mode once off her safe zone.  Keeping the sore knee up with her foot flat and bent knee on the good side. She protects it well and no new blisters have formed on the butterfly pattern on her knee.  The other knee just has little nicks and spots, nothing major.
Oh one pinky has a decent blister covering it's entire length and should be painful, but she's coping very well.

She's finally moved out of our room and seems to be sleeping better where she is.  This was because Renata's sister and our niece is her occupying Cordelia's room.  Cordelia took over Raquel's crib which is very funny as it's all kid.  No spare inches there anymore.  Full house and it's 5 girls 1 boy.  Raqu has been great or we don't hear her or her us and seems only to need a little top up of food to get through the night.

I've been working very hard lately as Renata's sister is here to help out, so I disappear early and come home late.  It's been great, finally getting lots of work done.  Except I only get to see Cordelia and Raquel an hour or so of  each day over the last week...
Well last night was because I went for a four hour bike ride that ended up a friends house and beer...  Not sure I can call it a four hour bike ride then, oh well, I was covered in mud from head to toe so I looked the part when I arrived at home.

We're headed to the cabin for 10 days.
Should be good, except Summer has not come to Canada yet!!!!  Cordelia is excited to continue her dominance in the fishing department.
If I catch one bigger than hers I'll be in trouble.  She's gone a month and a half talking over and over that she's caught the biggest fish to date....  17" dad!

We've decided that we're going to start to push Raquel for a G-tube and avoid what seems 'the inevitable'.  We've spent the last week reaffirming our idea that when she gets that real bad esophagus blister and resultant blockage and then add something else with her health, we won't be behind the eight ball.  She'll be able to get the nutrition, vitamins and medication and what ever it is will have a better chance at healing with the minimal suffering for all.....

Last night was funny.  I often let Raqu play with my Iphone and she's figured out how to check out different photos and push the arrow to watch videos.  Clever little girl.  Problem is when her hands are dry (her silks) she can't slide the images.  So I have to dampen them (Water + expensive electronics=...)
Anyway, she's a monster.  I take it away to help and she freaks out. 
I love the sound of 'pissed off' Raquel as opposed to all to common 'suffering' Raquel.  I actually enjoy the little giggle I get when she's misbehaving like a 'normal child'.

Yes times are good.  But like I've started to notice in our previous cycles we've about used up our good days in this stretch and am looking to our next big down turn any moment now. 
Week on week off.
Problem is where we're headed for the cabin it's an hour and a half from the next city.
Oh well, we're pro's now.  We can handle anything.

Lastly.  I'm not sure if I've mentioned this or not.  Vancouver has another little child with EB born just over a month ago.  Not sure details, just know little tid bits. 
It's the SH*)S.
So much suffering. 
I was hoping that at least with the odds of 1-1000000 D-EB we'd taken Vancouver out of the game for a decade or so.  Really sad.  I wish the family all the strength.  I'm glad we've been able to lay some ground work at the hospital and in the community though.  I imagine it's taken a good deal of stress away.  Although each situation is what it is.  People adjust to the stress no matter what it is.  It sounds like they have it managed and are doing well as can be.  Hopefully they contact us sooner or later and we can be of some assistance.  Mind you, I can't imagine the other father want's to hear me critiquing his dressings like I do to our nurses. haha

1 comment:

  1. Hi Ryan, Let me know if the other family would like to try some dermasilk out, sorry to hear the news. Dan

    ReplyDelete