EB Tool Kit, Genetics Consult & other things

Hey everyone.

I just wanted to thank everyone that has been taking part in my Avon Online Event, which is helping raise money to donate to DebRA.  And if you've been participating in Jonah's EB Auction - well then, a HUGE thank you goes out to you.  Both 'events' continue until the 27th, which is Jonah's birthday - so everyone still has a few days to partake of the fundraising. 

I mailed out Jonah's birthday card yesterday, so I hope he gets it in time!!

And yesterday (the 24th) was Elly's 1st birthday!!!  I'm so happy to see so many of these kids reaching this milestone!

Alright EB people, I need your input on something.  One of my favorite people (June) from Children's National in DC has been working to put together an EB Tool Kit.  Basically this stems from what happened the first time we had to take Leah to the ER back in July, prior to her trach being placed.  We had our little IV package from DebRA, lots of EB friendly supplies, and of course, our EB baby there - however the ER nurses flat-out refused to use my supplies.  Furthermore, one nurse made some kind of statement like "We deal with issues like this; heart: first, breathing: second; and anything else going on: last".   Well that's all fine and well with 99.99% of kids - but not my kid.  But anyway, that combined with what the jackass IV tech did to Leah's skin a few days later resulted in a complaint being filed by my Mom.  Part of the hospitals 'apology' was to create this EB Tool Kit that will be kept on hand for when EB kids come into the hospital.

This is what the plan for the box is so far (in bold) and my thoughts (in italics):

Skin Tape: Mepitac, Hypafix - Mepitac only .... Hypafix is really hard to remove, even with mineral oil

Skin Barrier Dressings: Mepilex Lite, Allevyn Thin - I'm adding Mepliex Transfer to this

Non Adhering Dressings: Mepitel - I'm adding Restore Contact to this

Dressings for Absorption: Mepilex or Mepilex Ag - since a silver product was included here, I'm adding PolyMem silver Non-Adhering Pad

Silver Products: Arglaes silver powder

Wrap: Tubifast, Webcast, Kling - I just wanted to add a note for the preferred gauze being Conco.

June is amazingly great ..... not only does she keep up on all things EB, she's willing to listen to me and actually values my feedback on this.  So ...... if anyone has any thoughts for things that need to be added, removed, tweaked .... please please please let me know either by commenting here or by emailing me at: MegGehring@gmail.com. 

Speaking of the hospital: I got a phone call yesterday from the genetics department at Children's National.  I've been emailing with the dermatologist that Leah had there about getting us some information on the genetics side of things. 

(I know people are curious but feel weird asking - so ............ yes, if Jeff and I were to have more children there is a chance that our next child would have JEB - a 25% chance.  Because Leah's skin biopsy and blood testing weren't conclusive - Jeff and I need further info and testing on us to find the genetic defect that we are carrying.  Once we know that, we have two ways to go: IVF or just getting pregnant and then doing a test around week 8 that would test for the presence of EB). 

That's a short-story version, anyway.

Now some of that depends on what insurance will and will not cover.  But I won't even go into that. 

Basically, we have an appointment on the 8th to go have a consult with the genetics folks to see where we stand.  Bad news is that we have to go to the hospital ...... which we haven't been to since the day Leah died.  So we'll be there, in the place that reminds us so much of Leah and why she's gone, where her trach was placed, where she almost died in July, where she did die in December, where I've cried on probably every single floor; to talk about EB.  Should be fun. 

Jonah's EB Auction

Hey everyone.

There I go not posting on here again ..... sorry.  I was just emailing with another EB Mom the other day saying how my days are just a whole lot of nothing right now.  My days used to be all the same, with 24/7 care of Leah and now that I'm still unemployed, surrounded by snow and have 0 energy .... well, you get the picture.  My situation is: in a funk. 

But I went to get my hair done yesterday so that helped to make me feel a bit more human.  So I'm getting there .... I just need to get myself a job to get back to feeling normal.  I've always either been a student or an employee (and sometimes both) but now that I'm neither - I feel lost.  

But anyway .... the *point* of this post is to give everyone info and a link to this online event.

I'm sure everyone knows about Jonah. Well, he is turning one (!!) and to celebrate there is an online auction going on.  All the money will be given to dEBra (which I'm sure you all know about as well). 

Well, I have nothing to put up for auction ..... but I do have an online Avon store, and the ability to host events with all of my sellers earnings going to a good cause.

So ................... I set it up to start today, even though Jonah's auction doesn't officially start until the 23rd. 

The most important thing to remember is to make sure that 'Jonah1' is entered in the 'Coupon Code' box.  I did a test run and when you enter through the links I provided (http://mturnquist.avonrepresentative.com/online_event/view.php?rep_spnsr_evnt_id=32700), it should automatically be entered - but please just check to make sure so the sales are included as part of this event.

Thanks everyone!!

Picture

My mother-in-law made this up for Jeff and I for Leah's Birthday.  It's made to look like a painting .... but still comes across great on a computer screen.

Boy ..... she was a beautiful baby:

Happy Birthday

Happy 1st Heavenly Birthday Leah

But the God of all grace,

who hath called us unto his eternal glory by Christ Jesus,

after that ye have suffered a while,

make you perfect, stablish, strengthen, settle you.

1 Peter 5:10

For the most beautiful baby and the most perfect angel.

All our love,

Mommy and Daddy

 *****************************************************

Butterfly Birthday Cake for Leah

Butterfly Ball (Moment for Leah)

A few posts ago I wrote about the upcoming Butterfly Ball and how Todd asked to include Leah, and wanted me to write a few words for him to read to the attendee's.

The Ball is not until February 20th but I wanted to post what I came up with; considering most of you readers out there won't be making it to the Ball anyway.

Leah Elizabeth Turnquist was born on 2-10-2009 and returned to God on 12-31-2009. Leah suffered from Junctional Epidermolysis Bullosa. She spent half of her life trached and her whole life bandaged. We knew that Leah's life would be short ...... but glorious.

In just 10 short months she touched more lives than I could ever imagine. Her strength taught me to be stronger, her courage humbled me in the face of the challenges her daily care presented, and her spirit renewed my faith that nothing happens without God's will; and that the beauty in the world is infinite.

She never spoke one word; but her eyes and smile told a story of unconditional love. I know her transition from an angel here on earth to one in heaven was effortless.

We miss her dearly and her Daddy and I yearn for the day that we can once again see and hold her.

.......... I hope you like it Leah.

All my love forever and ever, Mommy

Butterfly Bows

Hello again.

I had wanted to post this for awhile ..... because it's so sweet, and cute.

Sara Denslaw, who was always an awesome person to talk to about all things EB when Leah was still here and I needed advice; and who is still an awesome person to talk to in general ..... well, she makes these super cute Butterfly Bows and donates some of the proceeds to organizations that help EB sufferers and their families.  After Leah passed, she designed one and named it after Leah:

It, and all the other bows, can be seen and purchased here.  Leah's bow is in the 'Butterfly Collection' towards the bottom of the page.

I know I have a lot of family and friends out there with little girls who have a lot of hair .... so please think about buying some bows for a good cause and put some more butterflies in the world. 

Oh and I guess you'll notice some changes I'm making to the blog.  I intend to continue doing this blog, as Leah will always be a part of my life, and I will always be looking to do things in her memory, for EB, for EB families, etc.; but now that she's gone I need to do a mini makeover and make it more of a living memorial.  For example, today I added the music player at the top of the page, with some songs that make me think of Leah, and also a button to another bereaved Mommy's page. 

Just checking in

Hi everyone. Sorry I've been MIA on here lately. I'm starting to come down with some kind of sickness.  My colds always start with a sore throat and an ear ache and I've had that for 2 days now. Maybe it's the blizzard coming, or how dry the air has been, or that I've been walking around on the snow-covered lawn trying to encourage Sam's house training - I don't know. I even had my first migraine in years the other night! I had frequent migraines back when I was in college (1999 to 2004), but I honestly couldn't even remember the last one I had.

Ah, but anyway.

The 31st marked one month since Leah's passing. I wanted to write something on the 31st but just didn't have the heart to do it. It was an OK day overall, and I guess writing would've just made me reminisce a bit more than I would've liked to.

The other day someone from some kind of Medicaid program called me, asking me why her computer was showing that Leah's Medicaid had been terminated. I felt bad for her because she obviously had no clue and wouldn't have thought that a 10 month old babies insurance stopped because she had died. My father-in-law had made all the phone calls informing everyone of Leah's passing so I hadn't yet had to actually tell anyone that Leah was gone. So it was very strange to have to tell someone who didn't know. And it put me in a funk for the rest of the day. It's strange how certain things make me sad. Seeing babies doesn't really bother me, seeing pregnant women doesn't bother me, hearing a toddler call out 'Mommy' doesn't really bother me; but getting baby stuff catalogs in the mail bothers me, and getting those automatic emails from Pampers.com with a subject of 'Your baby is 11 months old today!!' bothers me. I've gotten a couple catalogs in the mail full of items for a babies 1st birthday ...... and I growl in anger. Some of our good friends had a baby shower a couple weekends ago and I didn't go ...... she's having a girl so seeing little pink baby things was not on the top of my list of thing's I'd like to do. And I can't watch any kind of 'Baby Story' or 'Bringing Home Baby' show. And it's not out of sadness; I like to see cute little newborns. It's the parents I want to slap for their inability to realize the miracle of a perfectly healthy baby. "Oh my gosh this baby won't sleep and always cries!! How horrible!! I just want to get out of the house!!" Eh ........... just shut your mouths and take care of your kid.

On the other hand it reinforces my faith that God gives the most special of babies to the most special of parents. If you're going to melt down over a couple weeks of colic; something like EB, or Downs Syndrome, or Autism would leave you crumbled on the floor.

Sorry, I don't mean to sound harsh ..... but I'm still very angry. I've always been hot-headed, quick tempered and well .... harsh. I don't know when I'll stop being angry. I know Leah wouldn't want me to be angry. But I can't help it. I mean, I get it. She was given to us because we could take care of her. We did the best we could and in the end we had to give her back to God. But what am I supposed to do? Pat myself on the back and say 'Way to go, you kept your daughter alive for almost 11 months .... cheers'?

And I know being angry is part of the process .... I know all about Kubler-Ross .... remember, I was a Psych major .... but it still sucks - there's no other word for it.

I haven't had any strange dreams lately, but I've had one recurring dream that helps me think that I am moving in the right direction with Leah's passing. (While I didn't take any Dream Analysis classes, I did read up on it myself while in college). Now, I never see faces or people in my dreams ... I just know that they're there. Just like I don't hear voices, I just know what's going on. But anyway, my dreams are that Leah is back; whether or not she has EB, I don't know (because true to my dreams: I can't see her). But I'll know in my dream that she is back and I'll think of something like a doctors appointment for her and then I think "No ... I remember the doctor saying that she's gone ....... this doesn't make any sense when I know that she's gone". And it's always the memory of sitting in the PICU room with Leah as she passed away and the doctor we had that morning as he quietly came in, knelt down in front of me, put his stethoscope on her chest and after a moment took it away and said "She's gone". I guess that was the defining moment, and so now it's etched in my mind as 'the end'. The doctor we had that morning was wonderful, by the way, he was so kind and didn't push anything on us, in either direction.

But anyway, my whole point is that, rather than clinging to Leah and just thinking 'She's back, she's back' - all I can think is that it's not right .... she shouldn't be back, she doesn't belong here. She belongs in heaven and I know she's there because of the doctor telling me she was gone.

I know it'll be a long process - but I think we are moving in the right direction. I think in the perfect definition of psychosomatics; on days when I really miss her, it seems like the site of my Cesarean scar aches. I dunno - I'm weird.

On to other things .............

Apparently some people have asked what we are doing on the 10th to commemorate Leah's 1st birthday. Honestly, I have no idea. I'd like to do some kind of memorial service where we release butterflies at some point ...... but not in February, obviously.

But anyway, so yes the 10th is coming up, but no there is nothing official planned. If and when we do plan something I will be sure to let everyone know. So everyone can stop asking people that are not me -- cause even I don't know right now ..... got it? Thanks.

I don't know how I'm going to feel on that day, so I can't even say that I'll want to see anyone. My parents offered to come down to keep us company or take us out to distract us. But I don't think I even want to do that. All we know right now is that Jeff will not be going to work so we'll both be home together, and that's about it. Maybe we'll just stare at each other all day.

In other news, the puppy is doing well. She knows how to be a lazy pup on a snowy day. I think she's been sleeping on the couch for almost the entire day. We're expected to get upwards of 2 feet of snow here in Maryland so we'll be snowed in for a couple days. This somewhat hinders my house training of Sam since she would disappear in about 6 inches of snow, and she really likes to just roam around the lawn. So hopefully she'll pick up on the idea that it's cold as heck and snowing like crazy so she should just find a clear spot next to the house and do her potty business right there.

I'm keeping myself busy with random things ..... reading books, cutting coupons, searching for jobs, etc., oh and tomorrow while we're snowed in Jeff and I can work on our latest project: a 2,000 piece puzzle of The Last Supper.

Puppy!

I've been meaning to put pictures of my new puppy on here for a couple days now.  She is my birthday present!  Her name is Sam; I named her after Samantha Sheridan!  I've been calling her Sammie or Samster (because she's basically just a big hamster). 

She is a 9 week old Cavachon, which is a mix of a King Charles Cavalier and a Bichon Frise. 

She is adorable!!! And a pretty darn good puppy as well.  She's playful, smart, quiet and doing very well with house training.  The main issue I'm trying to curb is her nippiness.  She'll bite at my pant legs as I'm walking, my sleeves when I'm on the floor playing with her .... and of course, fingers, hair and ear lobes when we cuddle.  But she's learning that that is not nice .... a little tap or push with my fingers and she backs off as if she's thinking "Oh right .... she doesn't like that .... oops!".

Here she is:

I haven't been able to get a really good picture of her yet .... the only time she is still is when she's sleeping ... so all the pictures I have so far look like this:

Or this:

Or awake for a moment during a napping session:

She doesn't always look so crazy .... I promise.

My cat Hannah is adjusting to Sam pretty well.  I think because Sam is so small Hannah doesn't feel threatened at all.  Here they are from the other night:

I'm pretty sure Hannah thinks the puppy is ridiculous.  : )