Tuesday, February 28, 2012

Holy moly Blog hits

Now I really need to suck up to our Pediatrician for exaggerating on such a public domain (TV).  It's not like people were running around like headless chickens. 

Hello, my name is Ryan and I like to make slight exaggerations,    
at times.

Then there is psychological defense mechanism - 'projecting' that can be applied to my character,
at times.

I think I explained it in The Beginnings, but I remember a distinct tense atmosphere in the room.  I just wanted to enjoy the moment and the doctors and nurses were bringing me down,
What????
Just because my daughter was missing whole swaths of skin on her legs, feet, hands and lip?

To be fair it's taken 12 or so months to have built up enough stamina and perspective to deal with it when it does happen.  Which isn't to suggest we don't still lose it at times, usually when sleep deprivation is on tap
tap
tap
tap
tap.
In the parallel form of scream scream scream deep into the morning.

I digress.

It was very exciting to have Global do such a nice piece on Raquel and the bit of awareness it'll create.
It felt like a very busy week thinking and worrying about what might be said, edited etc.  The voice over was excellent and certainly carried the ummming and hmmming with some great concise back ground information.
The girls looked great.
As far as the stills they had shown, I'd forgotten a bit about Raquel in the incubator since I'd taken the light saber vs alien hand image off the title of this blog.

 It was a surreal time.  Baby covered in bandages and Aquafor stuck in a little plastic machine in extreme discomfort, silently waiting and wanting of human contact.  I think in the evenings since having the G-tube placed she's fallen asleep only a handful of times not on either my or Renata's chest.  To think we weren't hardly allowed to touch her then???

Wow, even all the mouth issues we had..
Sticking needles into blisters on tongue with wiggling target.
Ohh the misses and stress that came with holding tight that little screaming body.
By perspective we're onto brushing her few teeth.
hahaha
Bleeding gums now are almost a non starter....

What a mess life was before we started feeding her through her G-tube.  I can't imagine we could have carried on much longer like that before we'd lose our marbles.

But now watching her jump on the couch (which she now demands for her evening workout) it's very gratifying.  She's somewhat robust in stature, mostly happy and fairly agile considering I didn't think she'd walk till she was 2 or so...
Now I get mad at her if she does the old tripod thing anywhere on the floor.
YOUR KNEES, I'd yell.


Dammit Janet posted this little shot.
How happy is this kid?
Drawing on her fathers concrete creations.  Really, who gets to do that and not get spanked?
Ummmm a kid with EB,
that's who...

Monday, February 27, 2012

As seen on Global

Rare Skin Condition for Raquel

Maybe our Pediatrician wasn't exactly 'freaking out'.
How about heightened concern.....

Sunday, February 26, 2012

News spot on Global News

We had a TV crew in on Friday doing a small piece on Raquel.
She was a super star and was amazing for the camera.
Cordelia, I feared would steal the show.  As soon as the tripod was secure and camera on top, she was in front of Raqu blocking her with her big blue eyes staring squarely into the lens.
The camera man then had to give her a little speech about what is supposed to happen with the camera,
but ummmmm now to think of it, I think I stared at it a few times.  Cordelia, got it anyhow, after the not so idle threat of sending her off somewhere outside in the rain by herself.  Clearly the camera man had similar concepts on Crime and Punishment as I.  Raquel was excellent if not a made for TV personality.  I guess I should hold up gushing about my dearest till the piece comes out.   She did have a nice sized smudge from a fall on my mothers carpet that I still haven't apologized to my mom for losing it over.

SORRY MOM....
I'll do it in person if she ever comes back from her work holiday from Grumpa.

For the camera
We did a few of our natural days activities - playing, drawing, then had a small hands free time which are becoming more of our routine.  Then we had a quick hand dressing moment to get those hands secure, again Raquel was perfect.  She protested for a moment or two, but Cordelia was there to side track Raquel's attention so that a movie wasn't required for background distraction.
Our nurse, whom may also star in this little short helped out from the outlying areas till she was required to hold Raquel's arm at this point.  If she does get filmed then I'll have to pull in her first name to these posts. 

Afterward I was interviewed and hopefully didn't stutter too much.  I know I pulled a few big blanks forgetting what I was talking about and probably droned on in some other abstract departure talking in circles.  This only occurred to me after I was asked a question and I spoke for a few minutes on the subject, then the question was posed again in the same manner.

I flushed and had no idea I was speaking in the wrong direction what so ever.
Then I tried to speak of DEBRA Canada and did very poorly.  I think by that time I'd lost my confidence.

I'm hoping the editing will be good.  For those of you (Simona, Dammit Janet & Mike N) that I pick on in many occasions, feel free to go nuts on this one.

I've been told it should air on Monday and even saw a preview on the website for the 6 o'clock news titled 'Meet a little girl with a rare genetic disorder'.

I'm starting to realize disorder is a better word than disease.
The later sounds contagious and far more scary at first blush.

I do need to thank Erin again.
Her article started this ball rolling.
Now there is a great push for EB awareness in the span of just over a week.

This is part of Raquel's crash the day before the camera crew came.

Never mind what her knee looks like.

It's been a freaking mess.
Thank science for Mepitel.
I did a poor job dressing it the first day and just moments before the camera came by when doing a diaper change we tore off a huge piece of skin and the dripping scab that healed right into the fabric holes of the silks.  That's never happened, we've had subtle sticking, but nothing a little warm saline water didn't fix quickly.  Which is a testament to how freaking tough this kid is.


Above is the knee when it was fresh.  Four days later it's certainly not looking any less painful.  Let alone what it looked like when we pulled off some of that skin.
One can see I've got a very firm grip on her leg below the knee and Ren is pushing down the other knee with considerable force.
Raquel was pissed!!!!
I finally figured out how to bandage it.
Three strips of Mepitel that go right across her knee layered like some of my mountain bike armour.
It was a funny little inner dialogue I had figuring that out and what I have for my knees when falling 10' off a rocky or wooden feature.

Which reminds me
Even after all this commotion I still have this to recharge for Vampire Soup.
It's been snowing like crazy in our mountains of late.
This is what it looks like for the non professional skier who misjudges slope, speed, trajectory, obstacles, snow depth, and a camera man. 


I'm still not sure how my whole body is so neatly squished behind that exploding shower of debris I so ungracefully sent onto Tom and his camera.
 
But to think, we climb and ski mountains in treacherous conditions only during the day....
I was trying to explain to Elena that if the hole by the cute little tree sticking up a foot out of the snow behind her goes down the near 4+ meters of depth we are standing on, Tom and my shovels aren't likely as quickly assembled as she thinks or would hope.

ahh a momentary exit from EB.
refreshed.
Even looking back at the photos of the week.

Can't wait to see how Raquel will adapt to all this.
Of course by then I'll probably be able to explain to Renata better why we "NEED" a family snowmobile...


Wednesday, February 22, 2012

Seems my little Princess is getting famous

We'll see.
We had a call to push the last article from the North Shore News into a different media form.
Exciting and scary.
Hopefully the direction is good, hard to know.
Erin who wrote the article suggested we'd get a further call or two.
It was interesting as Raquel decided the night before the photo shoot to do a face plant into Renata's knee pushing off the skin on her lips.
Wonder what phase of the moon Raquel will be living then?

Anyway she's great now.  A few bumps and a couple grumpy nights.
This is her breaking into my Moms Tupperware cupboard.
I'm pretty sure that bowl made pancakes since I was Cordelia's age.

The back edge freaks me out and I do my best to take it away from her as fast as I see it on her head.  The joy of blisters in the folds of her neck at the edge of a clothing collar.
But nearly every time we go over, at some point in the evening she walks out into the living room with her helmet.
It's ridiculously cute.
The bottom picture I'm pleading for her to take it off and she's looking at me with her big blue eyes holding it tight and saying Neeewwww.  The sequence shot would be her little butt running away from me.

Today Raquel discovered a new tactic in her wound care.
She pointed to her foot and said Aaawoooiii. As in possible blister.
I pushed and squeezed it to see if she flinched.
Nothing.
Problem was, it felt puffier then the bandage material even though she didn't seem to feel any direct pain from my prodding.
It wasn't a dressing change day, but to nip it in the bud we pulled apart the right foot.
Again, nothing.
Then she's bending over in her chair pointing to the next foot and saying the same thing.
I had to think, but wasn't sure if I'd pulled apart the right foot or was the left foot the right foot?
Apart came the next bandage and nothing.
She was happy swirling her feet in the small bowl we use for those washes.  Then started the big fuss to let her hands get into the water too.
Within minutes she had won and the whole lot came off and we were doing an unscheduled change.
By the time we were done it was nearly 9.
Good grief.
Again.  Our kids staying up way past their bed time.

If they both become highly neurotic later in life I'll have at least one more reason beside the hoops I make them jump through to blame it on.

Monday, February 20, 2012

Raquel made page 2 of the North Shore News

 This is the article link.  At the bottom of article are photos of Ren and Raqu as well as Moe.

 I'm not sure about the title.

The little girl who can shed her skin

It reminds me a little like Lisbeth Salander and her Dragon Tattoos or a snake molting in the jungle. The connotation that this might be a step in her growth is fairly miss leading, but if I'd have titled it, it would have been ridden with the appropriate gore.  Vampire soup, Blood and mayhem, Friction and trauma, A scream in the night.

Or a kitschy take on ready made headlines Happy, no lucky, The wrong genes or Mutations are us. 

Maybe not what a Sunday paper is all about.

In any case, it's a good article with lots of leg work done by Erin. 

I only wish that my brain wasn't as jumbled as some of the quotes she took from me.  I thought I was making my self clear, but I guess like in a good bathroom mirror you can make yourself look better than reality.  Once and a while walking down the street a reflection in a shop window leaves one feeling like the broad side of a bus, wondering which is more accurate.


Thursday, February 16, 2012

Dressings Feb 16

We received the minutes from the team meeting and the dressing notes were all messed up.
So I'll describe the process here then resend for our Dermatologist and Plastic Surgeon.

First is the layering of Viscopaste (zinc paste bandage) at the webbing and around the high abrasion areas.  Then small tapered cuts of Mepilex for the top & bottom of foot (a slight adaptation to what I saw from Casey's parents).  If there is an issue near her heal I'll put another square across there too.




































Then, I've restarted putting strips of the Derma Silk around the shin and forearm.  When lazy or when she's not cooperating it's much easier to just restart overlapping the Viscopaste up the leg or arm to just before the joint.

It's a little more of a art to remember which way to wrap the silk so that when the conform goes over top that they are going the same direction and smooth.  Today Raquel was a star for the nurse and I when we put on the conforming bandage.  The result a flat smooth finish.
Back at Christmas I tried having tubes sewn but the seam became an issue and it bunched or was difficult to pull on if there was too much Aquafor on her leg and get stuck.  Which resulted in freaky moments when you're pulling at something wrapped around her leg and you can see what appears as a large area of skin being pulled at.  The pulling never did create a blister, but I'm sure the bunching at her wrist or ankle did.
Again she's not had very very few blisters at the top edge of her bandaging because of her bandaging.
The silk under layer then just folds over as seen on leg in back ground.


Same on hand and arm.  I leave the thumb in two layers of Viscopaste.  The conform goes around her fingers like a mitt then up her forearm to below her elbow.  That is the silks going further up her arm.  Never a bad thing to have another layer of clothing at her elbow.  If the visco paste somehow works it's way off in the day or two between dressings, it's not a big deal.  We often leave it as long as there is the tube sock and her silks between her skin and the carpet or other scary abrasive objects.
This has been a very good wrap for some time and has had very little change since way back when I was fretting about hand splints.  Her hands stay weeks and weeks on end without a blister or issue.  Actually she has one very small blister at the underside of her wrist from Simona's exercise yesterday.  She wanted so badly to see Raquel's hands and play in coarse sugar (?).  I had to pipe up once I looked at how much like 50 grit sand paper it looked like and mentioned it be down graded the granular size to flour (~1500 grit), but by then they'd moved on to other things.
In the end Raquel got bored and irritated and it was a mild panic for me to get her hands wrapped up again.  Especially when the fingers went unguarded into her mouth and it appeared she was chewing on them.  It was then I could feel my edge angulating into a sharp point.
Last time I got my edge, it took Simona two months to come back.  Yesterday was two months or so.
<<<GASP>>>
BUT YES IT WAS ABSOLUTELY WORTH IT!!! (the small blister on her wrist and showing Simona her beautiful hands).  My edge never did appear (I don't think).....  I see it may have started when Cordelia nearly elbowed Raquel in the forehead.
 Notice her moose, bear, rabbit patch is now almost gone..
Her eyes are just too cute not to add these last two images.

Little Miss Demanding

The little princess I feared we were shaping has emerged.

After a stressful day of work I walked up to the door.
From outside I can see Raquel playing happily on the floor with a nurse and as I eagerly walk in the door to find out how her day was Raquel stops what she is doing, looks up to me with a furrowed brow extends her arm and with a clear and concise no bull word says.

"GO"

Pointing back to where ever I'd been.

Yikes.  I've become the evil dad.
The one that holds her down and pops blisters in her mouth.
The one that holds her down and pops blisters on her chin (any danger zone for that matter)
The one that holds her wounds tight to drain whatever fluid maybe pooled under her bulging Epidermis.
Then pours water on the raw open skin, although before that I'd been holding her steady in the bath while a nurse cloths her down.  Staring her in the eye for her to calm.
Wait a minute?  Baths were Ren's job.  Share in the suffering...
What else is there.
Yup.
Mostly abuse I guess.
Doesn't help that when we are together I'm teasing her in one way or another. 
Testing. 
Whatever.
Then unfortunately when she's really wild and thrashing and Renata no longer feels safe holding her it's dad again.

Tough.

It's funny to hear her clearly say GO.
But not really.

Tough love.

The fear I had, in which she's constantly getting everything she wants, at that moment has made her like a little General.  The nursing help is so needed, but...  Are we creating a monster?

That.
Go.
Come.
No.
with a little Pees (please).
Are her basic words.  She gets a new one every time you work at it with her for a bit.  But if it's meaning is not overly useful within the hour, it's not retained for too long.

This morning after a little tiff and disagreement and her pulling what I see as The Little Miss Princess Syndrome I carried her back to her crib and left her there.

Completely going against all my principles of EB care. 
Freaking kid, instant intervention. 
It's becoming clearer though when it's for attention and not.
After a few moments of the whaling I walked back in her room during a pause.

We had a short discussion with her saying UP UP UP UP and me laying the ground work for cohabitation.
Once up in my arms and back into the living room she went off again.
Back to the crib and repeat process two more times.

I don't get it.
Who else dances and listens to Dub with her?
She gets it too.  She pulled out some new moves today that had me in stitches.

So far this evening she's cried for 3 min every 30 minutes since she went down.
No major wounds, two dime sized on her one foot and a bunch of nicks all around her face.
So she's in very good shape.
Don't know.
EB or not to EB



"Are you really telling me I shouldn't be in the fridge? Do you know who I am?"



Sunday, February 12, 2012

Hands with limited freedom

OK.
I'm a complete control freak.
I let Raquel in the last few dressing changes start to play much more with her hands before they go back in the wrap.
She's been good and so far so good.
Walking around on her own free handed isn't in her cards as of yet, but not too far off.
Her range of movement is very good, although her fingers look a little awkward at times, but mostly in the first few minutes out of the wrap.
Today I thought she'd protest when it was time to re-wrap but she hardly flinched.  It was nice and hopefully she'll let it happen for the foreseeable future.


Our Czech family suggested Raquel looks like a terrorist in this photo.

 To me she just looks like she's got a bit of a head ache or sensitive eyes to light.  Typical look for most mornings.

Although today she slept in and woke in an amazing mood.  Currently she has no wounds of mention (three smaller than a dime), hasn't coughed blood in three or four days and as a result sleeps rather peaceful.

Gasp....

Two nights in a row now that she went to bed before Renata and I and woke well after us without a peep in between.
Both mornings I woke up very very groggy.
Too much sleep is bad for you apparently.

Ten of us out for beer night to watch the Juniors.  Giants vs Silvertips.
Last year the Giants were creamed 9-1
I think they won this year.....
If my vision wasn't already this blurry I'd have noticed to take a second shot
If those two don't have a fishing rod in their hands it's their Iphone and blackberry, if not watching it sink to the bottom or a lake or river...
I think Moe (left) had a good time if they'd very put down their phones and me my beer.
I was lucky Raqu decided to sleep those nights. I think Ren would have made me suffer.

Wednesday, February 8, 2012

Bor Waldemar Athony Verkroost

This is a guy I met while in Netherlands at the Debra Congress.
We sat together for a short while at the closing dinner party.  He absolutely cracked me up.  His total outlook on life is to be admired.  In my short time chatting with him I got the gist of what is in his few blog entries.

I'm a little anxious that maybe his cancer has been aggressive since we met in October since there are no entries past the late summer and his entries were somewhat bleak on the cancer front.  I can't remember the number of surgeries he told me he's had for cancer and what else, but it was an unfathomable number that made me listen in shock.
I'm glad I finally found a few of the missing business cards I collected while there.
I'm sure some of you will find his humour as welcome as I.
http://www.vaporizerblog.com/bor/

I remember Raquel's first team meeting which happened the first day we got her on the morphine.
We were talking about her appetite and I had some dumb comment about the munchies. I remember blushing a bit to push the conversation that way in a room full of trained specialist Doctors. When our pain guy quickly explained that opiates aren't in the category I'm suggesting and maybe in 18 years or so we can bring this up again.

While in Groningen, Netherlands Bor did a little presentation on his pain control in front of the auditorium.
At the end he asked if anyone in the audience was interested in trying the vaporizer and that they could come down then and try.
There was nervous laughter smattered amongst the crowd.

This is for our Czech family

Gabi is going to have to get some skiing in as Cordelia is going to tear her apart.


Monday, February 6, 2012

Year Two - Sun Peaks Family Adventure

Just before we left for a 5 hr car ride to one of our favorite family ski resorts Raquel developed a blister on each butt cheek.  The weekend was a blur of terrible diaper changes.  She hates them to begin with, but when they hurt like that, we all suffer.
This is her first diaper change after the car ride at the end of the trip.  I guess after 4 hrs of sitting in one spot the diaper stuck and pulled off some of the healing skin.  She rarely gets any blisters there, but has had a steady stream of them in the last few months, but nothing to compare to this.
I'm reminded of one of Tripp's photos and this actually doesn't even compare to how much skin was missing on him...  Suffering is suffering I guess.
Once we finally got ahead of her pain cycle she's been great.  Her ear infection morphed into a nasty cold so she would intermittently cough up mucus and today it's been mixed with some blood. When she finishes hacking she's back to being her happy self.
She's a mystery.

At present moment (video below) she's acting like a ham and stressing out Renata as she won't stop playing and refuses to sleep.  I wonder if those flippers will give her two big blisters at her ankles??

I have to admit, during our trip I didn't spend a whole lot of time with Raquel outside dressing changes and late night cuddles to stop her cries.  Lots goes on in a house with four adults four kids and the odd grandparent.  The first couple nights weren't much fun, the second two were bearable.  As a result of being an absent father there weren't a lot of photos of her in action during our little trip.  The best one would have been her walking around in the snow at base station, I was too worried about the inappropriate foot wear to let her walk more then two or three minutes.  SUPER Babi brought her down to the base of the mountain with the stroller to see us each mid day before the big nap.  Wow does that kid sleep well in the frigid temperatures.  Not sure if that's kept her with a terrible cold or not?  You gotta live and experience right?
Andrew was sticking me every opportunity he had at how incredible my mom is.

'Yes I know'.

Ella on a few occasions showed up with socks on her hands.  It took a while for us to figure out she was just copying Raquel.  Very cute.  There were no Fang like incidences which I feared during the trip.  So I guess I can remove 'The Fang' moniker.  Hmmmm she is the daughter of Maria, so maybe I'll just put her on a year probation before it really goes?



What I did do for Raquel was spend some time talking to the adaptive ski group who had a few booths with the many sleds they'd built for people with physical disabilities.  They have one perfect for her.  It's a fiber glass with adjustable seat and foot area on two ski's with outriggers.  The cock-pit area seems very well fortified with another hand bar that goes up over her waist.  It'd be easy to coat the whole inside with padding.  Maybe down the road my sculptural abilities could help the people making them to do some fiber-glassing.
Pipe dream, but that's the only way for me.
The outriggers should stop most of the crashes from flipping.  It shouldn't take much to make two more small roll bars that go the length to prevent total annihilation by way of road (slope) rash for your typical zero percent collagen athlete.
She'll be able to turn her head and adjust her shoulders and pivot the seat to carve like the rest of us.
She won't be powering down the moguls unless I pilfer all my languishing mountain bike parts for the extra cushion required, but with the right speed and encouragement we could get her down a wide open slope of fresh powder.  I imagine it'll be something near kayaking in the waves.  Pretty exciting for me to think she'll not miss a beat when the family heads off on our yearly adventure.  

Although I'd better start saving as the base model for youngsters is in the $3000 range.
The most exciting part is the adaptive ski program here in Vancouver which is linked to the ski team we'd like to enter Cordelia in next year.  On the boys weekly night on the slopes we see a few types of the sleds going at it up Grouse Mountain.
I guess we'll have to get her off all her pain meds if she's Olympic bound.  She sure won't be able to use Ross Rebagliati's excuse.

Above is Kai in the Spider man shirt behind Raquel.  He will become the skier his dad is plus some, even with those chicken legs he's inherited.  At four he did a full day on the big slopes, had some good turns and great crashes.  After all that he was still up at 7 pm urging anyone he could for us to go for yet another hot tub.  Super Kai.
Do you think after I bought Cordelia this huge chocolate cookie, she'd want to share any with me?  Any chance I had to steal some she'd start yelling for help from the others around us.  So not to seem like an abusive father I had to sit quietly and wait for her to graciously give me a couple crumbs. 
 A couple of my main fishing buddies came up for the day and brought a drive partner.  It was an excellent day.  Ren and I took turns taking turns with them while super mom (my mom) looked after Raquel.  Grumpa and her had their own digs a km away so in the end they could relax.

Andrew and I took a walk into the back country for a little off piste exploration.  Not exactly the coast mountains we're used to.  Way in the background to the right is where our summer cabin happens to be.  Way down in the valley it's hard to believe there are actual alpine peaks around.
Twilight ski home in peace, well after the lifts had closed.


I just couldn't film her any more.  I was getting sick just watching her go over and over and over and over and over and over and over.
Yes Super Kai watched then did it him self.  Over and over and over.
Wanna know who's going to represent Canada from NV during the 2026 Olympics in freestyle skiing, racing or what ever they got going then?

OH FORGOT.
Woke up in morning to see Maria making pancakes.
I asked her if she recognized the bowl she mixed the pancakes in.
Vampire soup anyone?

Wednesday, February 1, 2012

Team Meet

Raquel and I had a meeting with our care team and three of our steady nurses.
We went over many aspects of her care and talked about where other things might go.
It was interesting thinking about the many things I learned or was opened up to on my trip to the EB conference in Netherlands.  I found myself going back and digging up parts of a conversation I had with a Dr from Chile or a topic hashed out with a wound care nurse from Groningen, or aspects brought to light from our deep knowledge base provided by our new friends in New York.
The trip has proved time and time again to be an invaluable resource.

So much so, that I'll be digging up a few emails from Doctors in US that will help with Raquel's next procedure.
The dreaded dilation of her esophagus. 
It was first decided that they drop down some die to check out where if any (I'm not a betting man, but I'd put a pair of my skis up for it that she has some rather severe points), then if there are some problem strictures they'll go in and open them up.
We talked about how it's done else where, yet how rare EB is in Vancouver the Doctors haven't had any experience with putting the bag that's supposed to push out her possible esophageal strictures from the G-tube.
Thus avoiding the dreaded - top entry.
We've played that game before and it was terrible.  ie when the G-tube was originally put in.  She's not going anywhere this time till I know they know what they are talking about and will do the procedure without hitch.

After a brief interlude with Raquel. 
She just woke for her midnight howl.  What is she really?
Werewolf?
Vampire?
Either way it was a loud thrashing fit of discomfort.
I knew it was coming and I even predicted it today at the meeting.  Except I said stupidly that we were approaching our pre-Christmas bliss phase of no blisters and general content and sleep for Ren and I (oh right Ren was in Europe sleeping well).
Ummm, no!!
She was really pissed tonight.  Usually we wait and listen to how loud or frequent her cries are.  Is it the mad staccato or violent growl or the whimpering cry for attention.  The last being her smallest chance for attention.  This type of cry only works with Grandma and her nurses, Ren and I are immune to it.  Although when she adds Daddddiiiyyy, I can't help myself.
This time it was obvious, get in there quick.  Just as I was sitting down on the couch I received the back of her skull in the chin, uncomfortably cracking my teeth together and giving my jaw a good upper cut.
Nevermind the screaming baby!
It's those moments where I can feel the anger and the "FK EB" chorus singing real loud. 

Dammit, she's still at it.  These are the sad sounds of 'why me?'.  Not the type of cry where I have to intervene.  The difference being, she's had Advil, Morphine and an anti-histamine since our last encounter.
It's so frustrating thinking we were headed back in the right direction then the potential of what may have happened in the last hour turned that boat back down the rapids.

Add these uncomfortable thoughts to my sleep.
Did she get one on her head from my jaw?
Did she get one under her arm from my forearm attempting to keep her from lunging off the couch sideways after the blankets had gotten too knotted up and adjusted to be of any use?
How fast will they grow, if at all?
Will there be the bloody blister or the water balloon blister?
Joy.
Rest.
Respite?

hahahahaha

I'm just stressing myself out writing more.
I'll keep to myself what couple comments at the meeting rubbed me the wrong way.

Anyway, she's good, she's bad, she's got f'n EB!!!!


This is Raquel saying, "no, you may not re-bandage my hands". 

Raquel's pie hole.

This is likely the area she was hammering with her feet due to "the itch".

and the other side due to "the itch".  I can only assume.  But she was flinching as she was initially drifting off to sleep.