Friday, October 30, 2009

Eye Update

Well we went back to the doctor at Johns Hopkins today.  Leah's eye had actually gotten better overnight!! The doctor said the tear/abrasion looked smaller and there are still no signs of infection or anything else to cause worry. 

Today was better all around since we knew what we had to do and where to go - the only worry I had going in was that they'd look and say it was worse, or infected, or start bringing up that 'admitting' word.  Yesterday our doctor called her attending physician after she looked at Leahs eye and on the phone the attending threw that word out there: as in, if it's so bad that it would need to be watched they'd want to admit Leah.  Our minds were made up already that we wouldn't let them do that anyway, but even so ...... the battle of wills would've exhausted me.  And I'm already tired since I didn't sleep so well last night.  I recall waking up somewhere around 4:30 AM doing an 'Alright!' fist pump, then I realized I was doing it because I had just woken up from a dream where Leah's eye had completely healed and it was back to normal.

Oh and we didn't have any strange/scary people in any lobbies or waiting rooms today -- just a very odd dude walking outside on the hospitals campus that asked us something that neither of us could decipher.  I guess not living, working, or going to school in Philly for almost 5 years now has caused my skill for translating crazy-street-people to fail.  I figured a safe response was: "I don't know".  Jeff said: "I'm not sure".  I was more concerned with keeping myself between the crazy dude and Leah's stroller - all the while preparing myself to throw the crazy dude down on the concrete if he made any sudden movements toward the stroller. 

Our prescription for Leah's eye ointment got all figured out.  I took the script to the pharmacy at the hospital yesterday because the doctor said they should have it, while alot of other pharmacies won't because there's a national shortage of the stuff.  Rather than waiting 90 minutes for it last night, we said we'd be back tomorrow (today) for it -- but the pharmacy called me last night to say that they're out of it.  (Leah's doctor had given us a tube from the offices stock so we knew we'd be good for a couple of days at least). So today we got a copy of our original script along with another prescription that the doctor said might be hard to find but would be more available that what our original script was for.  But anyway, when we got home I was all prepared to call countless pharmacies until I found one that carried these eye ointments.  I called out local CVS first and surprisingly, they had both of them!!

Best of all we had a nice hour-long cuddle session on the couch tonight.  I know Leah's had a crappy couple of days with her eye hurting her, and just the general commotion of running around to doctors offices; so I wanted to love on her for a bit.  I've fallen behind on my house/mommy work these past 2 days but I said to myself "Screw that crap - I'm cuddling with the baby".

So our plan for the weekend is to just keep the little girl quiet and calm so she can rest her eye, all the while smearing globs of prescription goo along her eyelashes.  Then on Monday I'll call around to wrangle up a closer doctors office that we could go to. 

Leah and I are excited for the weekend cause her Nana and Pop Pop are coming down to visit her!!!  Hopefully she'll feel well enough to open her eyes up a bit to see her visitors!   

Thursday, October 29, 2009

Corneal Abrasion

So yesterday Leah's right eye started becoming a problem. It was slightly red, teary and Leah kept it closed for alot of the day.  She was snoozing and just not being as active as she usually is. She was still smiling and playing somewhat; and she had no fever or anything and was eating well. With all the rubbing she's been doing to her face I figured it wasn't outside the realm of possibility that she'd gotten to her eye and irritated it somehow. Still, we didn't know what it was: a simple scratch, something in her eye, a stye, or even a mild case of pink eye. So I was putting a warm washcloth over her eye, and trying to flush it with cool clean water and it seemed to help. However this morning we woke up to a very sore-looking eye that Leah pretty much refused to open. She drank her morning bottle with her eyes closed - something she never does. So I called our Nurse buddy at the doctors office and we took Leah over to the Pediatricians office. On the phone I spoke to the nurse about how EB babies can develop blisters on their peepers; so before we ever got there Nurse MacLeod called around to find us an Opthamoligist that we could go see; if they felt that they couldn't do anything for us at the Pediatricians office. So that's what we ended up doing: but it meant driving all the way into Baltimore to go to Johns Hopkins. Just getting there is a chore, then there was parking, walking to the building, finding out we are in the wrong building, going to the right building, checking in at security, checking in at the registration desk (where there was a very strange and slightly scary man sitting in the lobby demanding to see his eye doctor because it was an 'emergency!!'), going up to the actual doctors office, checking in again, filling out paperwork, then waiting to be seen. After all that, we got called back and the doctor put drops in Leah's eyes that illuminated her corneas, and with a special blue light, you could see exactly where the cornea was torn. And she definitely does have a corneal abrasion, a pretty significant one as well. The drops the doctor used also numbed her eyes so for about 30 minutes Leah could open her eyes, pain-free and look around. She's so stinking cute. She was such a good girl the whole day. I had eye problems myself as a kid and spent many an hour in an exam room and I hated .... HATED .... anything and everything about eye doctors, drops, people glaring into my eyes, pen lights in my eyes, making me track their stupid friggin finger, eye patches, eye charts ... you name it. Even walking into the exam room and seeing that huge thing they swing around to examine your eyes ..... it gave me the chills. And here's this kid with a torn cornea, EB, bandaged like a mummy, a trach, away from her cozy home and beloved Tigger and Pooh show - and she'll still tolerate strange drops in her eyes and strangers hovering over her with weird lights. I don't know how she does it.

So we have an antibiotic ointment to put in her eye (easier said than done) and we go back to the same office tomorrow morning so the doc can look at it again to ensure it didn't get any worse, and to make sure there's still no signs of infection. I can't imagine it'll be any better by the morning but as long as it doesn't get worse, I'll be happy.

Our new challenge, besides trying to get an ointment in a babies eye who doesn't really want your finger in her eye, is trying to keep her hand away from it. This is not the time for her to rub her eye and make matters worse. So for the night, to ensure a rub-free 12 hours before we're due back at the doctors office - we've Tubifasted her right arm to her torso so she can't really move it at all.  She's like a one-armed baby - I asked her if she was the one who killed The Fugitive's wife but she didn't get the reference. 

I feel bad about having to wrap her like that but she really is just sleeping - and her left arm is still free to move. If it works, after a day or so we can give her back her freedom, and just continue to constantly watch her to make sure she doesn't get to her face. And then when I'd have to leave her alone for a minute, to do something crazy like, pee - I'd just super-tuck her arms in with a blanket. 

Alrighty, I just wanted to give everyone an update.


Tuesday, October 27, 2009

How to Make an EB-Friendly Trach Collar

This posting is for the Roth family and their baby boy, Tripp.  Little Tripp has JEB, just like Leah.  And just like Leah, he had to have a trach placed at 5 months old. 

Here are their pages:

The biggest hurdle with having a trach and EB is keeping the neck wound-free and clean ...... the collar can be a big problem. 

Now, this is just how we do it - I ain't saying it's perfect, or the 'right way' for everyone - but it's the least I can do right now to try to help them out.

Tripps trach probably won't be changed for awhile so hopefully this will give Tripps parents the chance to try to get a nice soft, padded collar ready for him.  Then again, they may already have done this, or know to do this; so this may all be moot - but when Jeff and I did this at the hospital, the staff acted like we had just split the atom.  Plus it's good for other EB families that may need to make a trach collar someday. 

So ............
you'll need the collar (obviously), some cloth tape, and a piece of PolyMem Silver, or Mepilex (Lite, Transfer, whatever).  We use PolyMem because it's softer and more absorbant than anything else - but it might be good to use this early on for Tripp to help heal whatever wounds may come up under his collar now. 

This is what it looks like, National Rehab carries it:
(Courtney: if you'd like/need; email me and I can mail some out to you)

It'll be hard to pre-size his collar without an old one to go by, but a guesstimate will work .... pre-size it and cut the excess piece off (just how the directions on the collars package say to do it):

Take a piece of cloth tape (it works the best for us) and roll it longways to create a double-sided piece and put it on the collar like so:

Take your piece of PolyMem and attach it to the tape so that a small amount of the pad sticks out beyond the edge to ensure the edge of the collar doesn't rub/chaff/irrirate the skin, then cut the pad to size, again making sure a small bit sticks out from the other side:

Repeat the process with smaller pieces of tape and smaller pieces of the padding for the ends.  Leave a teeny tiny space in between the pieces, it'll help the collar to not get bunched up when it's on his neck.  Roun the edges of the two ends, and your collar is complete:

Of course you could use 1 big piece of Transfer, or 2 equal sized pieces of whatever kind of padding you want.  We do it this way after trial and error with other methods.  This way works for us because we can coat the 2 end pieces in Nystatin powder, and those pieces sit right to the sides of Leahs trach and help absorb drool and keep the moisture level down. 

So there ya have it: how to keep an EB babies trach collar area nice and safe.  With this method we have never had any type of wound on Leah's collar area. 

And of course, Leah wants to say something to Tripp:

Hang in there buddy!! P.S. I think you're cute ; )

Monday, October 26, 2009

How to rub your face when you're not supposed to

Leah ate some sweet potatoes yesterday!  She's still only eating about 1/3 to 1/2 a jar at a sitting - but it is a new thing for her and she always follows it up with a bottle so I'm willing to give her some time before she really starts eating big girl food like a champ.

Leah had a good weekend - she stayed away from her face, for the most part.  After last nights bath we decided to try to give her a little bit of arm freedom and not wrap her quite so thickly.  That wasn't a good idea because about an hour after we did that we had to reinforce her arm wrappings and go back to what we were doing before.  She's too quick and too smart.  She knows she shouldn't be rubbing her face, but she thinks she's slick and so she'll take a book or a toy, hold it up like she's inspecting it, then covers her face from our view and rubs.  She does it right in front of me and then when I bring her arm back down and give her that 'Mommy-said-no' look, she looks back and me like "Oh no, I was just checking out this corner of the book here and uh, thought I felt something in my eyebrow ...... " ::big smile:: 

On Saturday I got to take a day-trip up to Philly!! It was so nice to get away - though I missed Leah terribly.  Even just sitting in the car by myself, listening to loud music was like a vacation.  I left the house here at 9 and got to my Dads house at 11:45 - then chilled out in Philly until 6:45ish.  Leah managed to stay awake to see me when I got home.  Since I only ever go out to the grocery store or Target, she must've thought there was a really long line at the store or something.  But it was great to get out of the house and up to good ol' PA for the day.  I'll have to do it more often. 

Here's a picture from last night - pre-thicker wrappings, with the book she likes to use as her face-rubbing accomplice:

And here are some random pictures I found in the camera's memory.  They're probably from 2 or 3 weeks ago.

"Little Red Riding Hood eh?"

"Where's the stock report page .... gotta check my Amazon stock".

"I ain't got no pants!!!"

Friday, October 23, 2009

Happy Friday!

Leah's still sleeping in her crib like a big girl!  She's such a good baby that I don't know why I ever thought she'd be fussy at having her bed changed but even so, it's an accomplishment.  Nothing from her night routine seems to have changed at all.  She still gets 2 bottles overnight from Nurse Ann, and still sleeps in until somewhere in the neighborhood of 8:30 to 9:30.   Today it was 8:30 almost exactly but she wasn't happy -- she had pooped herself.  Normally she's all smiles at just seeing me or Jeff looking at her and saying "Good Morning!!" but I guess when you wake up crapping yourself you don't want to smile at anybody. 

Here is the little greasy lady, still sleeping, pre-poop:

Leah's face is looking much better, though yet again she managed to get to it overnight while Ann was washing bottles in the kitchen.  The new damage is the red spot just above her left eye - while the bigger, less red spot above that eye is what she did the other morning when I blogged about how she had gotten to it.  We have days when even that spot on her left cheek looks better and smaller.

She likes to sleep with her feet free. 

Oh and this one is from the other night when she was in the tub/sink.  It's too cute.  I think she was just finishing up a yawn:

And Leah is doing very good with her big girl food.  She finished her jar of butternut squash over 2 days; and yesterday she ate and enjoyed carrots.  She only had about 1/3 of the jar but she definitely thought they were very yummy.  Jeff's still the only one giving her baby food, while I do the bottles.  Until she gets a taste of some different things and really gets the whole spoon = deliciousness thing down, I think we'll stick with that and then hopefully I'll be able to feed her successfully as well.  She's just such a Daddy's girl sometimes. 

Wednesday, October 21, 2009

Big Girl Bed!

Well, it's actually just her crib .... but for the last two nights Leah has slept in it, quite comfortably and quite soundly.  Up until then she was in her Pack N' Plays bassinet.  I know there's a weight limit to those things and we were starting to push the boundaries there so we decided to turn our un-used 'dining room', which was functioning as a 'play room' into Leahs downstairs room.  She's got her own room upstairs too .... pretty nice huh?  I only have one room and I gotta share it with Jeff!  But anyway - I'll take some photos of her new digs but for the moment, here she is snoozing away.

Her face is looking much better!  Though she did manage to get to it this morning while I was making my coffee (Leah's almost never awake when I get up but Ann gave her a final dose of Atarax right before she left and it pissed Leah off so she was awake, moving and fussy for a bit) and she did a small bit of 'new' damage.  But even so; now we know that as long as we can keep her hands away from the face for a few days, she should heal relatively quickly. 

In other news: Leah ate big girl food yesterday!! I've been trying for months and the most she'll do is purse her lips against the spoon and then suck off teeny tiny bits of Carrots or Sweet Potatoes ... but that's it.  Apples, Bananas, and Peas were a no-go all around.  So I picked up some new flavors at the store on Monday with 'High Hopes' (Harry Kalas reference!).  My Mom told me how sometimes babies will only eat from their daddies if it's something other than a bottle.  So last night when Jeff was home I went and got some Butternut Squash ready.  I sat on the couch behind Leah and out of her sight so it was just her and Daddy and lo and behold .... she ate half a jar of the stuff & finished it off with a full bottle of formula.  Tonight we'll have to try it again and see if we've hit paydirt here.

Sunday, October 18, 2009

Lazy Sunday ... not really, but kind of

A couple new things to talk about:

Dr. Epps (Leah's dermatologist) called me the other day because the most recent test results came in.  According to Dr. Epps, there's about 6 subtypes of Junctional that were tested for, including Herlitz and non-Herlitz, and Leah's results weren't positive for either of those, or for any of the other 4 sub-types.  So the good news is that it isn't (I guess) Herlitz.  I am confused however, that the only thing this test shows is confirmation that it's Junctional.  So I believe the next step is for Jeff and I to get genetic testing done to see if that can get us any more answers.  Everything I've read seems to say that JEB is a recessive disorder, so that means both Jeff and I are healthy carriers of the EB gene - and we had a 25% chance of having a JEB baby.  So I'm assuming these genetic tests will tell us exactly what we already assume: that we are both carriers.  Dr. Epps mentioned something about this being a possible gene mutation situation but again, everything I've read points to JEB being from a recessive gene.  I don't know -- it's weird -- and I never took genetics in school.  Too bad all my organic chem knowledge does me no good. 

Dr. Epps also supplied us with our Atarax prescription to try to calm the face itching.  There's just one problem: Leah won't take it.  Nurse Ann seems to have a somewhat successful method of getting it in her mouth but I've been unable to duplicate it.  It can be mixed with formula -- but guess who can detect 1.5 tsp of medicine in a 5.5 oz bottle?  She's too damn smart.  She takes a suck, stops and looks at me like 'Nuh-uh lady'.  It's flavored medicine ... mint flavored .... Leah doesn't like mint.  Jeff doesn't either - as he said "You could put a teaspoon of mint in my Gatorade and I'd taste it & not like it".  I called the pharmacy to see what could be done.  They can add flavor to it but the mint will still be there.  So I just have to figure out what flavor would be best.  But, rather than ply her with meds (since every medicine seems to constipate her) .... we've decided to improvise on our bandaging method for the time being.  More on that later.

I tried to time our daily Leah care today just to give you an idea of what we do here on a daily basis.  We also tried to go a bit faster than usual today and not dilly dally since Jeff had to leave for work around 4 o'clock.  So .... Leah officially went into the tub (sink) at 2:26.  I always give her head a good squirting because it's her favorite part of her bath by far (though she really loves everything about bath time).  I place a nice warm washcloth on her belly to keep her warm, and then I begin soaking her bandages because it usually makes them much easier to get off.  Then I go limb by limb, slowly and carefully cutting off the gauze and slowly and carefully pulling off the EB-friendly dressings.  Then I'll take an overview of her skin and pop whatever blisters I can see/find/get to -- if she has any.  Some days she has none, some days there are several.  When I was all done with all those things today it was 2:44.  (All the while, I'm also monitoring water temperature, water level, and periodically reaching under her bath mat to let out dirty water). Then I begin to give her a nice sudsing down - trying to rinse off the layer of cream (whatever cream I put on her the day before - today it was diaper cream - it's not just for hineys anymore).  I use my little handy dandy squirt bottle women are given in the hospital after having a baby - it's proven itself to be invaluable for Leah's bathtime.  It gives a nice little stream that can either be kind of strong (when trying to wash off stubborn cream - or spray off gobs of Aquaphor from her hair) or super gentle (any tender areas of wounded skin).  Then I q-tip out her ears.  On most days I'll continue to pour warm water over Leah and do her spa treatment for about 10 or 15 more minutes.  But today we pulled her out of her tub-sink at 2:56.  Then it's into the living room for her trach collar change and new bandages.  We lay her on her changing table and I hold the trach in place while Jeff undoes the old (now soggy) collar and puts on her new one.  We finished that at 3:06.  Then we moved her to the floor on her kitty cat mat to do her bandages.  Today we had a minute-or-so long pause for an extremely rare mid-bandaging poop.  All the sudden Leah started crying her "I'm pooping" cry (though it sounds different through a trach I still know her cries) and I looked down to see the little turtle head poking out.  My choices were to either let it go on her clean blanket and possibly get on her clean, unbandaged legs, or catch the poop with my hand ..... so I caught the poop with my hand.  I didn't wake up today thinking "At 3:10 PM I shall hold Leah's fresh warm poop in my palm", but I guess you just never know.  (We don't diaper her till the end of her bandaging sessions just to give her some diaper-freedom/air-out-the-hiney time - and like I said she never poops, and even rarely pees during this time so it's never a messy problem).  So anyway - we bandaged each limb, put her in a new diaper and ta-da - done.  It was 3:36.  So yeah, just over an hour from beginning to end - but that's with everything being prepared beforehand and no silly dilly dallying.  I pre-size and pad her collars and always have at least 2 or 3 ready to go.  It probably takes about 5 minutes to 'make' a collar - though I've never timed myself.  There are always q-tips sitting in the airtight container of the wound cleanser we use to clean around the stoma.  I have a box of bandaging supplies on the floor stocked up for changes.  I pre-cut different sized pieces of Restore and keep them in an airtight container.  I pre-cut dozens of pieces of Tubifast for her arms and legs.  Any cream I use for her dressings is in Alwyn jars that we've used up, cleaned out and filled with things like Diaper Cream or DermaGran so that I'm not fumbling with greasy hands on near-empty tubes of ointment and creams.  And of course Leah herself is a big reason - she's still the best baby in the world.  She never fusses, fights, cries (unless she's pooping), or does anything in the way of "I know you guys hate EB, but I have it, and having it sucks worse than just dealing with it, so I'm gonna be upset at the world and make this hard for you guys too" to make extra work.  She just lays quietly, calmly looking around ... sometimes she folds her little hands together like a little lady waiting to be served her afternoon tea.  The regular things I do to make her smile still make her smile, even as she's being wrapped up like a mummy ... speaking of which ........

The only thing different about our bandaging session today, and the past few days, is that we're wrapping Leah's arms really thick so that she cannot bend her arm to get to her face to rub it.  She looks like the Michelin man - and she can still manage to reach the back of her left hand up to the middle of her forehead - but that's about it.  And it takes so much effort for her to lift her huge arm up and reach it that I think she realized it's not even worth the effort. 

Here's her face from yesterday (if only in a profile shot)... still looking pretty red, raw and blistered, and only after 1 day of super-duper arm wrappings.  She's kissing her giraffe.

And then here she is from just a few minutes ago as she takes her late afternoon nap:

My phone doesn't take the best pictures but it's easier than finding my camera (when my phone is always more accessible) and messing with the memory card.  But I hope you can still see that her head is looking better.  The top portion of the left side is still the worst, with dark red, shallow blisters that are scabbing over.

And lastly, we also weighed Leah yesterday after her bath. The scale said 15 lbs 1.5 oz - but that was with her somewhat damp towel on her so minus some ounces for that and she's still well over 14 lbs.  (She was just 9 pounds and some ounces when we left the hospital in late July).  

Wednesday, October 14, 2009

The forehead

We continue to have issues with the forehead, since Leah continues to scratch, rub and smear Aquaphor all over herself.  It looks like it gets better and then it looks like it gets worse .... or at least it's healing veeeeeeeeeeeeeeeeeeeeery slowly.  We're working on getting her some itch-relieving medicine, thanks to a blurb in Patrice's blog about little Jonah.  Thank you Patrice!!!
(We should have our prescription in hand by this evening).

But anyway, here is Leah (and her forehead) from Sunday night.

This is Leah from Monday morning (after a night of sleeping and not rubbing) - this is her 'I just woke up and don't know what in the world is happening' look:

And then here she is from Monday afternoon:

As you can imagine it's frustrating, and nearly impossible to keep her from rubbing.  Her entire head seems to be covered with a quarter inch of Aquaphor at all times but I have to keep reapplying it to her forehead anyway. 

Tuesday, October 13, 2009

Dear Santa.....

Since a few people have asked what Miss Leah would like for Christmas (not to mention that her Nana asks just about every other day) I decided to utilize Toys R Us's Wish List feature and make a couple for Leah.

The one is just toys & books and typical 'fun' Christmas things, while the other is a general baby items list with things like diapers, wipes, creams, lotions and potions (kind of like when you get socks and underwear for Christmas).

Here are the links to them:
General Stuff

My Mom just told me that the links do not take you directly to the wish lists so........... you can search for Turnquist in Maryland to find it, or if you can search by the numbers it's: 1572850 for the Christmas one and 1574252 for the everyday stuff.

Monday, October 12, 2009

Leah's 8 months old!!!

Saturday was Leahs 8 month birthday!!!!!!

And I actually got a chance to get out of the house with Jeff while Leah's grandparents watched her.  I don't think we had gone out together since sometime in early August & I hadn't been out of the house period since Monday.  Generally once a week on Mondays when Jeff has off, I get my chance to escape for a bit but it's only to go food shopping, or swing by Target for baby stuff.  It's not like it's for fun or anything - so on Saturday we decided to go to the Renaissance Festival here in MD.  This was probably Jeff's 10th or so year, while I've only been there maybe 3 times.  It's the same thing every year, but it's still fun to see everything there.  Jeff goes for the beer and games and I go to see Elizabethan costumes.  Seriously, that's pretty much why I go: I wrote a 30-some page paper on the symbolism and pageantry found within portraits of Queen Elizabeth I for my art history independent study course in college - so yeah, I can be entertained by seeing someone wearing a farthingale.
Plus, Hilby was there again!  I discovered Hilby on my first visit to the Renn Fest.  I suddenly heard someone with a German accent getting massive laughs from a crowd so I had to check it out.  (German does not typically = funny).  He describes himself as the skinny german juggle boy.   He's pretty darn entertaining -here's his website. 

And here is Jeff at his favorite game there, trying to Drench the Wench:

But anyway, we spent maybe 2 1/2 hours there - which is pretty good considering it was my first time away from Leah for a long time and I had several mini panic attacks worrying about her.

Speaking of the little lady, here are some pics of Leah I just took:

Sorry for the darkness but I did take them at about 5:30 AM and she's trying to sleep.  But it does hide how bad her forehead looks right now.  It's slowly getting better with almost constant application of Aquaphor, but even so.   I don't know why her skin is getting worse right now - the change in seasons, her growth spurt that comes along with added strength so when she moves she's really moving - or just her EB getting worse.  Of course I don't want to think it's her EB worsening because then I have to think: "what's going on internally if I can see all this happening externally?"  And it just really bothers me that her face is red and blistered.  For so long her face was totally 100% free and clear of any signs of EB.  Then we had the issue with her cheek, which continues to be a problem because that skin moves so much with smiling, drinking, crying - and now it's her forehead, and a spot on her nose, and a few on her right cheek, and a line on her chin  that rubs her trach ...... ugh. 

Oh and I'm awake so early because Ann took the night off because it was her birthday yesterday!  Her kids wanted to really do something special for her because this was the first year in a long time that they were all together -- so of course we are happy to see her have a night off so she can enjoy her day and not spend it sleeping.  So Jeff and I just did our sleeping in shifts thing -- I woke up at 5 and he went off to sleep until noon or so -- which isn't bad at all for just 1 night. 

Oh and also: I've been meaning to ask in a blog here ..... since there are a couple of fundraisers being planned right now for Leah, what kind of items would people be interested in purchasing?  Aside from the fundraisers themselves, I could make the items available all the time for folks to pick up to help spread the word on EB and help our little lady.  But what do people really want: big magnets (like Jonah has that can fit on cars), smaller magnets for fridges and file cabinets, keychains, pens, all of the above?  The site I plan on using has all of those things.  So yeah, mull it over and hit me back with either a comment or an email - though all the comments go to my email anyway since I moderate them ... but you get the idea.  Ok, enough rambling!

Monday, October 5, 2009


Leah's new favorite sleeping spot: on her bear mat on the couch:

We made it through our 4 days of no nursing - with sleeping in shifts, help from Grandma .......... and coffee.  I'm on my 3rd cup of the day so far.  It wasn't so bad.  On Thursday morning (last night with Ann here) I woke up early while Jeff slept until 9 and then went off to work.  Then when Jeff got home from work around 5 we did our daily Leah care regimen and then he went to nap.  So then it was Friday morning .... Jeff woke up around 1:30 AM and then I went to bed around 2 and woke up at 8.  Jeff didn't have to work until 4:30 so we had plenty of time to do our Leah care.  Jeff came home from work around 9:30 & I went to bed.  Grandma came over that night around 10 to help out overnight and so Jeff went to bed around 11, and woke up at 8 to go relieve his Mom.  I got up shortly after since I hadn't slept well at all that night (my allergies are the worst they've ever been in my entire life).  So then it was Saturday.  Jeff went to nap around 10 and woke up around 1:30.  We did our Leah care before he left for work at 4.  When he came home at 9:30 I went to bed with an alarm set to wake up at 4:45.  So now we're into Sunday ...... at 4:30 AM I woke myself up and Jeff went to sleep until noonish.  We did Leah care and then he went into work at 4.  Once again he came home around 9:30 and I went to bed with the alarm set for 4:45.  Even with 2 Benadryls in me I had trouble falling asleep.  I was up watching Rob Zombie's remake of Halloween until close to 11 ..... and then the next thing I know Jeff's waking me up and it's 5 AM -- the alarm never went off.  So it looks like Jeff's trusty old alarm clock is no longer trusty.  It's been acting up lately - and we have another one all set to take it's place - so I think it's time to toss it.   Jeff always has off on Mondays so he can sleep now as much as he needs to before we start our day of Leah care, chores, errands and everything else.  Then I can go to bed early and Jeff will stay up until Ann gets here around 11. 

Leah's still rubbing her face like crazy - and driving me crazy in the process.
Here she is resting before her audition for an off-off-off Broadway rendition of The Deer Hunter:

Actually it's just her with a piece of blue line Tubifast on her head.  Sorry, I'm using EB-mom lingo.  Tubifast is an EB product that typically goes over gauze to keep it in place.  It's basically a really thin tube sock with the foot cut out.  And blue line simply denotes it's size.  Red line is the smallest (goes on her arms) then its green line (her legs) and blue line is just big enough to fit over that melon head of hers. 
She doesn't like it, and continues to rub but it's all I can do.  Yesterday I nearly went mental trying to keep her arms down while keeping her forehead creamed.  I could spend 3 hours successfully protecting her face, only to have her rub away all the cream and make her rawness worse in a matter of seconds when my hands are busy with something else (diaper changes, etc).  If she continues to tolerate (somewhat) the Tubifast I'll try to incorporate it into covering her little ears as well. 
Her OCDish rubbing of her face may be something I can only blame myself for.  After complaining about it yesterday Jeff mentioned that it's exactly what I do to mosquito bites.  I scratch at them until I bleed, and then I scratch some more.  It hurts but it feels so good to scratch them at the same time.  I have given myself visible scars from scratching mosquito bites.  So if that's what she's doing, I can empathize.  It's weird, but then again; so are we. 

She also has my taste in music.  The current CD in the kitchen's radio is Ray Charles.  I put it on last night while strollering Leah around while I got some chores done.  It's my new thing: we'll stroll from the living room to the kitchen, collecting dirty dishes, gathering laundry; then I'll do dishes, make formula and bottles; pausing to do a few laps all the while.  So while doing dishes I notice that it sounds like Leah needs a suction - so I turn around to see that shes just super excited; slapping her hands on her lap, wiggling and smiling to the music.  Apparently 'What'd I Say' is Leah's current favorite song.  So we listened to it on repeat about 8 times with me kneeling in front of her stroller 'dancing' with her.  She especially likes the part with the 'ohs' and 'ahs' when I would push her away and then reel her back in while singing to her.  If you could hear her laugh you probably would've been able to hear it next door. 

Thursday, October 1, 2009

Neighborly day in this Beautywood

So the thought occurred to me the other day that if the suction machine broke, what in the world would we do? We haven't had any issues with it so far (knock wood) but if it suddenly broke, and there is Leah, freshly awoken, with early morning thick mucous and no suction machine - we'd be screwed. So I called the medical supply company to ask if there's any kind of back up device available to us. Here's how the conversation went:

(MSCR = Medical Supply Company Rep)
Me: Yeah, so; not that we've had any problems with it, but I was wondering if the suction machine were to break; is there any back up suction machine we could have on hand, or even just a small disposable battery run device?
MSCR: Well if it started acting up or broke, you'd call us and someone would either walk you through how to try to fix it, or we'd have someone deliver a new one right away.
Me: Yeah, but, if it's an emergency what would we do?
MSCR: Well you'd call ... and we'd try to fix it over the phone ... and then if we couldn't fix it we'd have a tech bring a new one out.

So yeah, basically the answer to my question is: no, there is no back up device available. Furthermore, in an emergency we're expected to call in (and be able to hear someone over Leah coughing) and calmly troubleshoot a suction machine while my daughter is freaking out trying to clear mucous from a 3.5mm tube in her troat herself. Yeah. And I find it hard to believe that I am the first mother of a trached child to call and ask about this so I'm not quite sure why the Rep was so unsure of why I was asking about this.

So I went online and just ordered an extra one so I can sleep soundly.  It'll be here in a few days.

In other news, our new every other weekend nurse quit. Well, she didn't quit the agency but she can't do our 11-7am every other weekend shift here because it conflicts with her school schedule. Apparently she missed a Monday morning exam the last time she was here and wasn't allowed to make it up and so she's not going to be coming out anymore. And this was supposed to be her weekend so we may be without a nurse since I don't know that a new one can be found, interviewed and scheduled on such short notice. Also, our regular nurse Ann will be out of town on vacation tonight and tomorrow night. She told us about it with plenty of time to prepare, since Jeff and I always figured that if Ann needed to call out in an emergency, we would just sleep in shifts to ensure someone is always up with Leah - as opposed to finding a sub nurse who wouldn't know anything about Leah's EB and who might unintentionally hurt her. (For instance, the new nurse that quit gave Leah a blister on her chest by taking off her leads the first morning she was here.  Why she even took the lead off is unknown but she either pulled too hard, too fast, or .... and I really hope this isn't what she did but it's Jeffs hypothesis: she used her fingernail to start lifting an edge of the Mepitac tape to take the lead off.  We told her to leave the tape and leads on for the next night but that's what I mean by someone unintentionally hurting her.  There's about a million and 1 things trained nurses could do to a 'regular' baby that they just can't do to Leah.  It's impossible to recite every single rule, do and don't.  The thing with the leads and tape is something I wouldn't even have thought of - so how in the world could I tell someone ahead of time: Don't do that.) 
But anyway, that's what we were planning to do these next 2 days (sleep in shifts and stay up with Leah) but now 2 days may turn into 4! 

Ann definitely deserves a break so I'm really happy she can get away on a vacation. She told me this morning that she hasn't been on a vacation in 8 years!! So I hope she has fun and enjoys her time off - but we will sure be glad to see her on Monday night when she's back!

Well Leah just got up and so I'll need to get a bottle ready in a minute.  I try to sing 'new' things to her everyday so while I was just getting her out of her Pack N Play and changing her, the Mister Rogers Neighborhood theme song popped into my head so here's how Leah started her day, and what'll be stuck in my head for the rest of the day:

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