Thursday, September 29, 2011

Cordelia's blog post for Raquel Bella

Terry Fox

Coco just showed me this drawing and story she wrote.
She's had some issues this week when learning about the great Canadian hero Terry Fox.
Terry fought cancer and did his best to run across Canada to raise money for cancer research.  For those who don't know, he didn't make it, but created an amazing legacy.
Cordelia's problem was that when everyone went for a run on Terry Fox day, she thought they were actually going to run across Canada.  She did her best to make excuses not go on the run or go to school that day.  She explained later in evening that she only walked when others in fact ran, so that she'd be sure not to get too far from home.
One night there was a boy that ran all the way across Canada, it was Terry Fox.

One day there was a fox, he ate a fish.

The Carrier and the Mutant Genes

We finally found out who has and who doesn't have the gene that's screwed up my little girls chances at a life of not being afraid of the mildest friction.

Renata has had a few rough days in the quiet moments when no one is looking or when the children and I are otherwise occupied.  I've caught her with the sniffles and water marks under her eyes quite a few times.  Almost as often as the first few months of her life last year.
I wasn't a big fan of finding out this information as it makes no difference to Raquel now, only that one or both of us will be seen as the bad egg.

Ren is the carrier of the recessive gene.
I on the other hand am normal.

The geneticist told Ren that gives us three different ways in which Raquel got EB.
The first one is that the gene from me mutated just then a one off of sorts. 
Which is mind bending when I consider it.
I have no idea if that's to do with Environmental Factors (such as my work sometimes with crazy solvents, etc.) or what?
I was previously convinced it was me with the carrier gene and Renata had some mutation because when Chernobyl happened they didn't tell anyone in the eastern block to hide, stay in doors etc. and she was radiated.
This isn't the case.
The second way, I've already forgotten.
Probably because I'm so concerned about the third possibility.
Which is -
I'm not the father.
Serves me right I guess.
For all those weekends I'm off sailing, biking, fishing, camping etc. etc.

The chances of us now joining to create another child with EB is probably much less than 1:1000000.
If we were both recessive carriers then it's 25% every birth.
Unless it's the third option, which is likely much much larger then the first number but hopefully in a societal sense much smaller than the second.

Wednesday, September 28, 2011

Writhing Sleepless Nights

Raquel was off the handle last night and has been for a few nights.
It is increasingly becoming an absolute struggle to keep her from ripping apart her feet and face from the squirming and rubbing.  Her strength is getting quite impressive.  I actually noticed the other day that she has a six pack of abs.  Didn't think babies could have those.  But when I think of how much strength I need to hold her still, her strength pushing the other way is doing it's magic.
Ren and I took turns wrapping her up the last few nights and holding her as tight as possible for over an hour each outburst.  Till what ever it was, past.
The sedatives played a part, I think, I hope.
We also set up the G-Tube and gave her a late night feed.
Which is becoming common, again. argh...

I've read about the extra calorific intake kids with so many sores need and it's becoming clear to me now why she's in that boat.  She currently has so many open oozing wounds it makes sense she'll need more to replace all that plasma and blood. 
Getting it past her throat is an issue.  I'm not sure it's a manner in which we can use with any regularity anymore.  A large mouth feed in the day has ended up resulting in late night issues and gurgling.  We're also not sure if it's saliva that's gurgling, broken skin flaps or if it's just that the saliva can't pass her esophagus from something going on further around the corner.

Half way to work this morning I got a call from Ren to come back as her left foot dressing was kicked off.
DAMMIT...
I don't feel the rigors of changes like a few months ago anymore, but losing a morning of work due to these types of things is irritating and difficult to catch up.  Especially if it's to be a draining change, full of screaming, puncturing blisters, tending to extremely raw areas while trying to be nice to all the other people helping.
Lucky for the paid ones.
They can quit when it or I get too much.
The loved ones, duty bound must suffer with Ren, Raquel and I.


I received this in an email from a new and valuable friend whom is also mother and wife.  It explained how to read into what a wife and mother is actually saying when they say 'Do not come home at 3am", (as detailed in a previous blog post).  She also sends Renata and I many useful advice tips on EB as her son also has EB.  It is very likely that nearly every question and philosophic void Ren and I come up against will be run through her. 

My husband is just like you..I always tell him don't come in at 2am....He thinks victory is 1:59 am...He doesn't get it..Just for the future...."don't come home at 3am " is sarcastic for be home by midnight...and if you are going to be drinking, it means 11pm....  You need to learn the female language.  :)

I have read and mildly understand her advice but I will likely remain a man with selective due times.
As in, when fishing and I say 2 pm I actually mean I'll leave the water shortly before two and if it takes an hour to drive home that's it.
I guess somehow with relationships there's finding the happy medium.

Trust me, when I test Ren's patience "for real" (to borrow Cordelia's favorite phrase) I can behave, kind of.  I tell her I love her everyday, usually she replies with the same sentence.  Sometimes I hear it, unprovoked (?).

In fact I encourage rebellion at home for certain things, Cordelia's to a lesser degree.

Raquel was happy this morning.  I don't get it.  We just played 'hut hut'.  Which is when she does a try pod and passes something to me through her legs like a football center. 
She's in the bath, I await the rebandage.
She's an oozing bloody mess.
But happy.





Monday, September 26, 2011

September 26, 2011 Dressing Change

Week since blister

Week since blister








Getting to check out her hands.


Why one never should pick up a kid with EB under the arms.

Mouth and Esphagus

On Saturday I decided to have a little fun at a design party with a few friends.
As I walked out the door, Ren gave me strict orders not to come home at 3am.
mm hmm.  Sure, I can get in before three I think to myself....
Some how time lost it's presence from 11 till some time after two.  Must have been the scotch as the first few hours went by rather slowly.
At 2:50 I came charging through the door and proud that I'd gotten home under the line.  With a drunken grin I was ill prepared to deal with what was going on as Ren gave me the stink eye while holding screaming baby.
I also then found out that coming home shortly before 3 am wasn't actually my dead line it was more in the midnight to 1 am range.
Seriously?  Why not say one then....
Raquel was a mess for the following 12+ hours.
Eyes shut for most of the morning.
ahh her and I.  As she suffered with EB and me with intoxication.
The only thing that kept me from having to suffer on my feet was that Ren's parents are still here visiting from the Czech Republic and filled in.  By about 3 pm both Raquel and I were able to come out of the fog of pain and suffering.  Except, bed time for Raquel brought on another cycle of very uncomfortable gurgles and choking till she was able to cough the deep blister apart.
It's strange to be holding your daughter in anticipation of the blood stream to start flowing out the side of her mouth.  So that she can finally relax and maybe get some rest.
Which is exactly what happened.  Ren noticed the big red patch on her blanket and I sighed in relief as I could feel her body slowly let go.
She was able to drift off and nearly sleep the night through.

This morning, she was wide eyed and standing in her crib babbling for someone to come get her.
This is a further indication the G-Tube is working it's wonders.
These type of flare ups would last at least a few days as is previous documented.  Her's now last about 24 hrs and it's back to near normal.
What a life.

Friday, September 23, 2011

Cause and Effect

I'm getting absolutely dumb founded how Raquel can take such incredible damage to her skin and keep on ticking.
These are her feet during today's dressing change.


Before

After

Bananaing foot.
How can this not be inhibiting to nearly everything she does?
We popped and sliced the blisters poured saline water on top and through the holes onto the fresh wound and she barely flinched.
Then later once Cordelia was in bed Raquel ran (crawled quickly) across the floor playing hide and seek with me.
Crazy is, she actually gets the game.  She starts it and as long as I stay still she finds my blind spot and sits there till I turn to her.  With a giggle and scrunched nose she bolts off again to get into my blind spot.
Funny Kid.  She absolutely cracks me up.


I don't blame the Ortho for the right foots blisters.  How can I, I dropped my cell phone on Raquel's nose.  He at least was trying to help her and figure out a decent future of walking.
I think that's worth a blister.
Dropping one's cell because he was playing Angry Birds for an hour while his daughter slept on his lap isn't.
Although Dammit Janet, picking her up with bare hands on bare chest falls way short of even the cell phone gaff.  Even if you had your man of divinity helping out in that few second brain lapse.
Don't even try to argue!

Apple should make phones slightly more grippy, can't count how many times that phone just slipped out of my hands.  Janet's man of divinity should make all people with Collagen 7 or at least fix those pesky recessive genes people carry around for life times and never know.
Then you'd be able to use your phone and pick up your baby without fear.


Thursday, September 22, 2011

Went to see Plastic Surgeon about Raquel's foot.

I was describing to the Dr. what was going on under the bandage
and all that came out of my mouth was 'bananaing'.
He asked a few times for me to repeat my explanation obviously waiting to see if I'd struggle to the conclusion of 'bananaing', so he could further get a giggle at my expense.
He finally described what was going on in medical language, although I can't repeat it as I'd already begun to forget all the Latin words the moment they came out of his mouth.
The bone here (I point) is bending.  It's either (I think) from the skin tightening or a bone malformation.
Bananaing.

Our Plastic Surgeon then bolts off to see if the Orthopedic Surgeon is near.  The one he suggests, oddly enough whom was too busy to see us for two months.  We now only have one remaining, officially, but possibly 20 seconds.
Renata started to speak about us having a meeting with her next month, but I gave the shhhhh! signal.  Nice to be able to jump the line when you have a Plastic Surgeon pushing the right avenues.

Anyway a different Ortho surgeon shows up just as I've pulled the last piece of bandage off.
Takes a look at the foot, then I go back into my explanation of 'bananaing'.  This time I realize the joke was on me.  He proceeds to push and bend the foot, checking out how the bones move.
I think you all can imagine how large Renata and my eyes were watching someone check out the torsional movement of Raquel's foot while holding her bare skin.  He did have gloves and a limited amount of aquafor, but not nearly enough for my liking.
I figured we'd have to sacrifice a blister or two for a plan of action that could be started there and then.
Once he had a good idea what was going on he started to tell about the different shoe/brace options and how a kid of her condition could handle the pressure.
I looked him in the eye and said it's likely you just pushed all the skin off her foot just then and that we'll be suffering with blisters for two weeks on that foot, now that it's healed.
A flash of panic in his eyes, and the response.  I didn't do anything.
haha
Well he may not have, but that's about the most direct pressure I've ever seen on her skin.
I've done a similar thing with her foot, but while it was wrapped in a fresh coat of viscopaste.

He was able to diagnose her foot had both skin and bone issues.
The Dr exclaiming that was 'good news'.
Still not sure how that is 'good news' even if I knew it already.
Now put a restrictive shoe on a kid that can't have restrictions on her skin and see what happens.

Our evening just rolled right into a night where Raquel did her best impression of a Werewolf.
It's those damn mouth blisters again.  Actually, could be an balooning foot too.
I'm just happy her mouth didn't look like she was devouring Cordelia's blood while she was asleep.
A night of midnight howling vs a drooling stream of blood.

Problem was trying to get at those deep blisters now.

Not only did we find out that she's got those foot issues as confirmed by doctors, I've realized all the mouth blisters she's had, have already begun to restrict her mouth opening.
One of the things I've read about with EB, now like many of the other issues we can check that off our list.
I realized this because she can no longer open her mouth wide enough for me to get in there with a needle.
FK!FK!FK!FK!
If a real problem goes down like the famous ER visit with the perfect hole of the uvula keeping her breathing going as the entire inside of her mouth had fallen off happens again, I'm not sure how easy it's going to be to get in there to pull, slice and dice all that flapping skin.

Quick! Bring in the KIWI! (as referenced from the first Blog entry)

Last night I ended up having to guess and take a blind stab at were the blister was at first inspection.
Until recently I could catch a fly ball from behind my back, get a good idea of trajectory, turn my back and wait for the slap of the ball entering glove.  So this is kind of the same thing (?).
It was huge, so there wasn't much of a chance at missing it.  Problem is getting past the moving tongue.  I did one poke and hoped that was it.
I'll need some of those tongue depressors the dentists use now.
It's very annoying as she's way bigger and her mouth is already smaller then when she was months old.

Which begs the question.
How much smaller is her Esophagus now?

Can't imagine discovering that now and still having to wait a month for a G-Tube.

argh.

So sad.

Just, so sad.

We get the flashes of recent weeks that she's in the best spirits she's ever been in, but really, the blisters and sores are adding up and in a few places already drastically deforming her from the scaring.
Yes I'm still making her do flips off the couch using strategically located pillows, and yes she might get the odd little blister from it, but if she doesn't get any agility training, once she gets a cure how will she be able to keep up to Cordelia on skis?










Tuesday, September 20, 2011

Eight years of Bliss

Apparently we got over the 7 year itch.
Could be that we were in survival mode and couldn't be bothered to scratch at each others flaws in what some say is the critical year of marriage.
Although, I do have to search hard for Ren's flaws.
Mine are about as prevelent as Raquel's bumps during a week's adventure, but other then my friends reminding me, Ren endures.
'Marry an Eastern European' I used to say.  They'll make great cake and run the household.
haha
Of course that's not exactly the case anymore as Ren is about as Canadian as they come now.  Her cakes are hit and miss, but always improving.  We unfortunately are tragic at running the behind the scenes of the household, but one day, maybe we get it.
Her patience for her husband although isn't typical for a Canadian woman.
phew!!  :)

Happy Anniversary Ren.

I couldn't have gotten through this year without you.
I said this already to her. OR DID I?

How could I have not said "I DO"

Saturday, September 17, 2011

I can't remember what life for Raquel was like when she didn't have a GTube?

I can hardly imagine anymore.
Would it have been about being woken at all hours nearly on the hour for a year?
Would it have been about mouth blisters being popped nearly every day.
Would it have been about living in total fear that the entire inside of her mouth could fall away once again without warning and worse while anyone else in the world other then me was holding her?  (Of course that statement has a whole lot to do with the over protective side of me).
It was.
It was about a lot of pain and suffering by Ren and I and whom ever else was close by.
Raquel keeps getting better in spirit and the lapses of trauma are getting further and further apart and lasting no where as long.
Yes, I popped a blister in her mouth this morning.  It was noticed while getting her into her car seat for the Saturday's excursion.
The blister was big and black and dripping off the front edge of her tongue and needed immediate attention.  Seeing she was fairly immobilized in the car seat, I yelled to Ren to bring a glove, aquafor, a needle and an spent syringe for the extension of the needle as she was locking up the house.   Raquel quickly realized what was going down and started to close her mouth and twist away.  Her big eyes looking down and watched as I pulled the blue plastic sheath from the needle and then put my left index finger in her mouth holding her lower jaw down and mouth open.
By this point she's not interested in looking, just getting away away.
I slid the needle in at a perpendicular angle to her tongue piercing the thin layer of ballooning skin, then with a little twist on the retrieve to tear a slightly larger hole so that the tiny hole won't seal.
Over & done
Raquel was back to making silly faces at her sister sitting beside her within seconds.
For the rest of the day including 6 hrs on the road and in the little sea side community of Steveston, Raquel only spoke out in frustration when she was hungry.  She contently sat through brunch and a walk along the river.
We brought out the G-tube and fed her in the restaurant and in the car on the way home, even stopping mid way for an afternoon espresso. 
She was a star.
Funny, the conversation started by her pump and tubes leaving the small table and disappearing under her shirt toward her belly.
'Is that her breast pump'? was the question.
haha.
Raquel's???
haha 
I didn't laugh then, I was too stunned by the question.
When things are going well, I often feel like giving the questioner a scare and giving the real hard facts of EB quickly.  Honestly sometimes it's best, as I hate the question, 'will it improve over time?'  Best to nip that one early on.  I already feel sad by that, I don't have to see someone feel sad for her and us too.
It's the sh*&s.  We're getting by and even starting to see a ray of light. 

I can only think it's the nutrition that keeps her so happy.  She's plumper and her colour between the scabs, sores, scars and milia is very good.
Alabaster.
The gorgeous Spanish Alabaster I once carved while living in Paris.  Oh the romantic past life I once had.
What a twisted life.
When I say or type how good she is, the exact moment I finish the word Alabaster (just then) I hear a little cry.
Listen hard,
Cry gets LOUDER!!
No need to listen anymore, time to make it down the hall and avoid any damage she might do  by picking her up and wedging something between her legs and keeping her hands from her eyes.
45 minutes of crying rubbing feet and squirming later.
I guess that's an acceptable outburst should that be the end of it for the remainder of the night.
Our life is a little ball of Ying and Yang rolling down the road.
light dark light dark light dark.
At least it's paved with the G-Tube and rolling right along.
Before it was spinning in mud or banging on boulders, going no where fast.
Looking often to the clouds for a sense of peace.  As moody as they may be here in Vancouver.

Monday, September 12, 2011

The Rutt is Over.

Raquel slept through the night and we've been able to cut her pain med in half.
Her eyes opened within minutes of waking and she ate from the bottle.  Although she was drooling heavily, which is usually a sign of throat blister or teething.  Today will tell which.
In any case it wasn't a morning of suffering by all.
Joy.

Sunday, September 11, 2011

Stuck in a rutt.

Renata's parents arrive and Raquel plunged into one of the worst three day period in months.
Not only did she get a pesky eye abrasion she also had a few horrendous mouth blisters.  The last one we popped this afternoon poured blood as if she were shot, soaking the side of her face.
Talk about your introductions to EB.  Even the Colonel gasped (Renata's judo, ass kicking army dad).
Seems all the new nurses get here and everything is peachy.
Then eventually time catches up and they get one of the horror changes, where she's trashing and screaming and material is flying everywhere and we have to take a couple goes at a limb before it's on right and her feet or hands is a gooey mess of broken skin and raw flesh.
Thus was this weekend for Raquel.
No wrong images of EB being a peaceful disease managed well by her parents.
We didn't sleep Thursday, Friday and a good part of Saturday night.
The days were crazy too.
Except I dissapeared like a good little fisherman and caught fish for lunch today

and dinner yesterday.

Both were excellent days on the water.
Total immersion in nature and it's awesome surroundings.

I had to put my food in the sand next to this bears.
Would have been the perfect time for him to walk around the corner though, were in interested in fresh Human instead of rotten salmon.  As I had one leg out of my waders, which aren't the easiest to pull my feet in and out of in the first place.  Would have been funny watching me run down a beach, bare one foot with waders dragging behind me.  Limping and the dragging material getting caught on every other boulder I past.

Ren has semi excellent days with her parents - minus screaming baby every 4 hrs till her max dose was administered.
Renata needs a hobby she approaches with the same kind of zeal I do fishing, mountain biking etc...  It would probably be tougher on our marriage, but at least I wouldn't sound the jerk for having all the fun in nearly every weekend.
Cordelia was Cordelia.  Adaptable.
I have to side track.
While fishing today I yelled up to Cordelia that I had a fish on.  She came running down the beach chucking her baby crabs she was assembling from under the rocks yelling can I bring him in!!!!
I mean how could I not let her try.  Even though my two buddies also with us were having difficulty bringing in fish of their own.
She was great.  She was able to muscle in her first salmon on the fly.  Well I guess it's more like trolling if it's already on the line when you get the rod.  Never the less, she landed a nice salmon, something I couldn't do in my first few tires.
There's that pride again.  Prouder then her first walk I have to admit.
I mean, most kids will eventually walk.  There was no reason to think Cordelia wouldn't, but catching her first salmon.  I think that rates higher for me then those first steps.  I liked the bright interest in demanding a chance to haul it in.
Not sure how Raquel will fare standing on loose rocks knee deep in salt water tugging on a rod with the butt end buried into her abdomen.  Cross that path one day.
When we finally got it to shore I realized it was just on the edge of being a keeper as it was starting to colour prior to spawning.  This type of salmon starts to get green on it's back with a hooked nose, bars on it's side and a white belly.  This one was only showing medium signs of all this.  So I let it go.
Mr. Hoza (Renata's father) wasn't impressed.  Between the language barrier I wasn't able to explain it wasn't an ideal fish, especially if we weren't to be able to eat it for yet another day.  I already had a very nice silver one behind me in a pool made by the kids.
Why be greedy?
Off it went and so did all the other fish, as a guy tossing pots and pans moved in on us.  I guess it's hard watching a couple fly guys catching all the fish with feathers.  The lure to get at our quiet little area we'd maintained for an hour or so was too much and he couldn't help but to plunk large metal bits at the rolling salmon schools scaring the fish and us away.  Once it was clear the fish were gone, so was he off down the beach to shock another school.
Oh then there was yesterday.
After my morning of bliss, catching many many salmon, I thought I'd take the girls for a bike ride.
Raquel loves the bike trailer so in she goes and off we went down to Moja for a coffee.
Renata had arrived just moments before and commented at how important and happy Raquel looked in her two wheeled contraption.  The ride and morning was so good.  Unlike the evening before.  So I decided to push my luck after the required cup of caffeine and take the girls for a slightly longer loop.  I'd look back every few minutes to see if everything was OK.
Of course I forgot to look after a few more minutes then usual and Raquel was fast asleep with her forehead rubbing up against the plastic window of her Chariot.
Good Grief!!
I stop instantly and pull her out, only to discover I was too late.  A large blood blister had already been created.  Then in my panniced tussle she wakes and she goes off.
I had to carry her about 2 kms in my arms pushing the bike & trailer with my other.  Cordelia was breaking down by then too.  With my arm feeling like it was lengthening by 2 cms every 100 meters and nerves getting shot with little miss blood blisters and the princess whining or crying, home seemed to be a million km away.
Oh well.
Life isn't interesting if you can't get through hopeless chaos once or TEN TIMES!!! every week.

It wasn't till this evening that Raquel finally snapped out of her cycle of suffering.
She started to push the clothes basket walking again.  She's really starting to become more stable.
As well she was in the bathroom watching Cordelia bathe laughing and giggling.
That was until Cordelia put her head under water and started to blow bubbles.
Raquel screamed with the look of fear in her eyes.  As if to yell at Cordelia to stop and not drown.  It was rather cute to say the least
I think it's all Renata's fault.  If I were in charge of baths she'd be fine.  She sees Ren's deep down  apprehension for water I guess and is frightened to the core..
rock and roller

Can you tickle the foot of  a Baby with EB?



Thursday, September 8, 2011

Blisters and Happy Eyes


On to the next issue.

In the last few months I've noticed Raquel's foot has started to become somewhat deformed.
I brought up what I thought was an issue quite some time ago.  I was told by a few people not to get too  worked up about it till Raquel is putting some weight on it.  In the last month she has started her little walking sessions and the foot and ankle are becoming more and more an issue.  The foot is bending in it's length quite drastically toward the instep. 
I didn't harp too much on it back then as it was something I trusted in the Doctors opinions and whom ever else had a say.  The mechanics of bandaging makes sense to me, not bone growth and what babies can or can not grow out of.
As I think all babies look like aliens anyway.
Again, to those who have children with EB, when something is wrong keep at it.  Don't wait.  Talk louder.
Unfortunately I didn't do anything about it while we were in the hospital for the G-tube.  I had a good chance at getting to see a new member of the team..
I glossed over the issue with Ren many times leading up to the G-Tube operation, hoping she'd not get too worked up and blow my focus on the mission at hand.
It's down right awful around here when we're both freaked out. (One at a time)
Keeping this one inside so much has been driving me crazy and tires out the mind in the quite moments with all the other things that is EB. 
I'm a little worried Ren is gonna hold a grudge, should this not get corrected in the short term due to my early inaction.
Thankfully I don't remember who told me to wait.  Or else it might be me with the grudge.
A few excuses are running through my head to explain, but they don't hold too much water should they be pressed.
Anyway, we finally had a physio take a look at the foot and ankle today.  She agreed.
ISSUE.  LETS GET ON IT.
I think it's the bone.  Already there is some disfigurement with this foot at the toes.
The two toes I've given up on are on that foot and have let join, because I could no longer get any bandage between them.  Also those two toes are stunted along with the big toe on that foot.
The area never seemed to grow like the rest of her body.
I'm quite afraid to look into club feet. (no I don't want comments on club feet till we've progressed in our doctor meetings coming soon!!!)
I've heard of clubbed feet before but like EB 15 months ago.  No clue.  Only unlike EB it can be largely fixed.

Stress.

Go Fish.
Grab a card and see if it matches a card in your hand.

or

Go Fish.
Stand in an ocean or river up to your knees and see if a fly matches a fishes apatite.

So far she's not hampered by a goofy ankle and foot, although she'd probably be walking no problem by now.

argggh.
up
down
down
down
down
up
up
then paste in a whole much more downs.
Honestly, now that things are going so well in the last two weeks, the focus required on this one should be good.
Her hands are amazing and the other foot 'fairly normal'.
G-tube is working and her stoma isn't sticking out too much.  Although it is freaky watching her insides make it outside around the plastic tube into her stomach.
Hmm.
Easy peasy.


Saw Tripp's mom's latest post.
Poor little Raul.
(insert expletive here)
Yes I agree with Courtney, that young woman is about the bravest person I've heard about in a long time.  Or something else....
Especially now that I know what's in store for looking after a special needs child, there's no way I'd take it on full time given the choice.


Still, she's put in some good time for that boy and got him to where he has a chance to attempt -
Flips

Monday, September 5, 2011

I think we're finally feeling like a normal family, again.

I think this is the first time in a year that during a week I've not felt more down then up.  Especially in those quiet moments when it's about the thoughts and dreams of Raquel and our future with her.  A big part of that will be how Renata and I will continue to cope and be the strength Raquel and Cordelia need.
This last couple weeks the trend with Raquel has been upward in a big way.  She's still continuing to develop in leaps and bounds.
Raquel discovered hide and seek on her own.  The other night we were on the couch and she crawled back and forth behind my back in an attempt to hide.  She'd laugh and giggle every time I'd turn to the side of the couch she had crawled to, then with a smile bolt back to the other side out of view.  It was the first time she'd set the parameters of a game and taken it on on her own pace.  We did this over and over and over and the more we played the happier and louder her giggles and laughs would become.
Pride.
Love.
Happiness.
 
Last night we went over to friends for dinner and were able to ride our bikes.
Raquel was in the trailer and Renata and Cordelia rode along side.  It was a very liberating experience as a family, to all be on the road at once.  It will be one of the more memorable nights of the summer.  Helps that the company and food was great too. haha.
What caped it off was she fell asleep in my arms while we were all still drinking wine and chatting.  She stayed asleep on the entire ride home (I was not an intoxicated cyclist) .
It wasn't till 11pm,12am,1am,2am and finally 3am that we got back into the rough routine of wondering what in the hell was wrong with her and what should we do to get her to stop freaking us out and making each other grumpy and be comfortable and sleep.
PLEASE>
We figured it out and it wasn't till 6 that she woke again, Ren and I fed her and had her stay quiet till 8.
Renata tried desperately to go back to bed once I had the feed and everything covered so to get a few more hours of peaceful sleep.  Unfortunately for her #1 woke up and I could hear Cordelia pestering her the whole time in our bedroom.  When Renata finally was forced to get up, I pretended I was comfortably sleeping on the couch with Raquel.  haha..
It wasn't exactly the case.  I was resting, yes.  Eyes closed, yes.  Asleep, No.  Arm dead asleep though.

The G-tube has a huge part in the success we're having right now.  It seems it's been able to be a preventative force in her care.  I figured it would be an emergency back up, but it's proven even more useful. The blood blisters and lancing in her mouth was all to often.  In fact it was getting rather insane.
I have only lanced one blister on her tongue since the G-tube was put in.
I think Ren has done a couple, but nothing as traumatic as what was the norm way back when.
As much as we hate the formula chosen for us to use, because of the horrible sweet vanilla smell, sticky when anywhere but her belly hole and the fact it's a derived nutrition it's been keeping her plump and happy.
She has had a run of throat blisters, but I'm starting to believe they were a lingering result of the intubation and am hoping they don't rear their ugly, painful, annoying; gurgling, flapping, burst blood bubble annoyance any time soon.

Pictures from today.

one of my faves of all time, too bad it was taken on a goofy iap.







Thursday, September 1, 2011

She's walking!!

Not exactly on her own though.
She started using the half empty clothes basket.  She uses it like Grumpy will be soon shuffling after a walker.  Push, three steps to catch up. Push, three steps to catch up.
I'd have videoed it, but Ren and I were in hysterics laughing at how cute and determined she was using this new tool to get around.  She has been very funny of late - during the daylight hours anyway.  Her vampy cries in the middle of our sleep has long not been funny anymore.
She's becoming her own person very fast and all the development that is coming with it is very exciting.
The baby luge I was doing the other day, well, it's not been a good idea.
She has figured out the easiest way down off the couch is to go head first, tuck her chin and do a somersault, landing neatly with her bum at the bottom of the lower pillow.
This evening it all went wrong Pete Tong, I was watching her, then the instant I took my eye off her to respond to Cordelia I heard a thump. She wedged her head between the large pillow and the couch, then did the somersault styled flip.  Again, panic...
What damage was done on my watch??
Renata had just walked out of the room and now I'm looking down on Raquel as she is looking up off into space and wondering if the latest experience was worth crying for or not?
Then she slowly started the many little levels of awareness that eventually lead to a full on tear jerker and high octave sobbing fit. 
Except after the second loud pout it was over.
I did a quick check of all the exposed areas for ripped skin just as Renata came inquisitively back into the room.
'What's wrong?'
Raquel had stopped complaining and there was no evidence of foul or blisters, so I was off the hook.  I didn't see a point in explaining what had happened, as I'd have been put on another.
I'm hoping her development and comprehension comes quick.  She's not getting the 'feet first'  directions.
Problem is she's always watching Cordelia and I rough house.
It's obvious, she wants in on the action in a bad way.
I honestly can't wait till tomorrow evening when I get to see her push the hamper around.
Gotta go to a kids store tomorrow on the way home from work and get some rubber bottomed socks for her to wear for traction!  The wood floor is going to make for some hard nose falls for certain if she can't get a good footing.