Wednesday, December 30, 2009

In the hospital (Day 5 - Surgery Day)

Hi everyone!!

Just a quick update before I crash for the night.  I've had a cumulative 7 hours of sleep over the past 2 days.

Leah did AWESOMELY today.  The IV wasn't a problem, the G-tube went in without issue, and 8 teeth were removed without any damage to her mouth or face. 

Thank you to all our prayer warriors and to our prayer warrior wranglers.  I KNOW that is why everything went well.

Grandpa Guy is there with Leah now while Jeff and I are home to eat real food, take showers and relax a bit - then Jeff will head back to the hospital, I'll sleep here and wake up early to make the drive back into DC to start my G-tube education day.

It looks like we may go home on Saturday!!!!!
We'll most likely all be at the hospital tomorrow night so we can see the New Year come together, as a family.

Thank you to everyone at the hospital who have been so great.  Nurse Raena - you are by far our favorite RCU nurse - thank you for being my brain today while I was stressed out and sleep deprived.  Doctor Ben - thank you for coordinating everything, for listening to us, believing us and believing in us.  June - thank you for being so dedicated to Leah that you'd wake up in the middle of the night thinking about her and ways to make her comfortable and well.  Doctor Preciado - thank you for being our advocate and saving grace - and for saving Leah's life back in July.   To all the doctors and nurses who took part in Leah's surgery today: Thank you for taking care of my baby.

Thanks again to everyone out there for the prayers ....... keep em coming because we're still not quite done with everything - but things went really well today!!!

Good night and God Bless! 

Tuesday, December 29, 2009

In the hospital (Days 3 & 4)

Hey everyone.  Sorry I didn't get a chance to blog yesterday but when I go through the list of events, you'll know why.
I came home to take a shower and a nap and I'm in bed waiting for my Tylenol PM to kick in.  I don't need it because I'm not tired ...... I'm pretty darn tired, but my mind won't stop working.  So hopefully typing all this out will help that.  And I apologize beforehand for any typos or anything I write that doesn't make sense .... I'm on not much sleep and much stress. 

So anyway, yesterday morning when Jeff and I got to the hospital Leah looked incredibly unhappy.  She had the NG tube in, with her tie contraption keeping it in place.  It looked goopy, dirty and uncomfortable so we cut the tie off and that seemed to calm her down a bit - but not completely.  Rounds were done and I talked to the docs ........ by the time I got back in the room she was back to being totally pissed off.  We asked for some Tylenol for her.  Our nurse came in (Adrianne - who is also our nurse today and we had her back in July and we love her - she's awesome) to check the placement of the tube before pushing the Tylenol through and when she went to draw the air back out of the tube, blood came with it.   So that's why Leah was unhappy, the tube was making her bleed inside and the blood was collecting in her tummy.

The nurse went to tell a doc and Jeff and I stood there with Leah, watching her cry, fuss and have a look on her face that was beyond pitiful.  We knew she was bleeding and why ........ so without permission, and before anyone could stop us, we took the tube out. 
It didn't calm her down completely because she still had the blood in her stomach making her nauseous - and we had just pulled the pesky NG tube all the way out again but eventually, she calmed down and I think in the end Adrianne forgave us.  : )

Somewhere around that time, the docs from pediatric dentistry came around to see us.  They were great -  they knew exactly what was going on, how JEB can affect the teeth, and knew before seeing her that some teeth may have to come out and if so, they'll do it when the G tube is being put in so everything gets done at once.  So they looked at her and we all talked, and sure enough some teeth will be getting pulled.

After the NG was out, the docs from GI came around.  They were not great.  They said they'd want to do an upper GI exam and put the NG tube back down to make sure Leah could tolerate different amounts of formula.  Jeff and I still had the blood-tinged NG tube sitting there and we tried using it as a visual aid and kept repeating that we did NOT want that tube going back down her throat.  The docs kept repeating that that is the only way to make sure a G tube could be placed.  Oh, and that the earliest her G tube could be placed is next Wednesday. 
I could see we weren't getting anywhere so I bit my tongue and decided to save my energy for another battle that I could possibly win.

So that was that ......... for awhile .......... until our beloved ENT surgeon, Dr. Preciado came to check on Leah.  Praise God for Dr. P.  He really just wanted to check the status of Leah's trach area - which he said looks great - but then I told him about what happened with the NG tube and how GI wanted to put it back down and how Leah wouldn't get a G tube for another week.  Dr. P knows first-hand what Leah's throat looks like inside.  So that, with my plea, and the urgency in my voice made him join us on our side of the battle.  He shook his head and said "Nothing should be going down her throat ...... that NG is not going in again".  Now, while Dr. P doesn't really have anything to do with Leah for this admittance to the hospital; he has a lot of pull at Children's - so I knew that was one problem solved.

So as it is now, Leah has no NG tube, and no IV because of the state of her skin.  Her teeth are making it so she won't suck a bottle or binky, and from the several NG episodes, her throat hurts too much at times to swallow.  So we are feeding Leah by dropping formula or Pedialyte from a 3 or 5 ml syringe into her mouth.  I feel like a Mama bird feeding her baby chicks.  It's so sad and cute at the same time.  She loves that she doesn't have to suck but it takes 30 minutes to give her 2 oz of liquid.  And with the droplet-feeding style, inevitably some dribbles out so it's impossible to get a read on what she's really taking in.  But yesterday when we discovered that this is the only way to feed her, she went through four 2 oz bottles of Pedialyte over the course of 2 hours.  That made the docs say that we could continue with no IV and no NG tube, but we'd have to keep feeding her, droplet style - as she wants it. 

So Jeff and I both stayed at the hospital last night so someone was always up to see if Leah looked willing to drink.  I only slept from 4:30 AM ish to 6:15 AM ish.  And last night around 7 I drove all the way home to pick up Leah's formula (since she's such a picky eater and that's all she really likes), our Haberman feeder (just to try - it didn't work) and some snacks for Jeff and I - and then turned right back around and drove back to the hospital.

A little bit after midnight last night a doc from the surgery team came by to talk about the possibility of one of the docs from his group placing the G tube.  I decided to take advantage of the fact that a.) he's most likely not a decision-making guy ... since it was 12:30 AM and he's alone, in Leah's room just trying to get information - b.) Leah was NOT very happy at the time .... her teeth and throat were so bad she wouldn't even close her mouth - and c.) I was there, looking tired, concerned and a wee bit upset.  (For about 30 minutes before he came in I'd had my head next to Leah's, gently rubbing her head and whispering prayers in her ear - crying for about half the time because of how much pain she was in).  So I took out the 'concerned mother of a special needs child that has a disease this guy knows nothing about' card and played it.
I explained everything; how her skin on the outside and the tissue on the inside can be affected in the same way.  What the NG tube did.  How her teeth need to come out ASAP.  How she can't or won't swallow sometimes so I can't even know that her Tylenol is going down.  How she needs her G tube for nutrition and hydration because EB kids can get dehydrated sooo fast.  How she can't have an IV because of her skin so I can't ask for any strong pain relief.  
So those facts that I reeled off without missing a beat, my pale sad face, and Leah's pitiful state planted the much needed seed of: this G tube and teeth pulling thing needs to happen and it needs to happen now.
After he left the room I literally winked at Leah and said 'There ya go kiddo'. 

Sure enough when our main doc came in early this morning to talk to us, the game plan had changed to: just an upper GI as a pre-op procedure and most likely surgery tomorrow to place the G tube and pull the teeth.
The upper GI got cancelled this morning .... I never really got a reason why but I really don't care - if they did it at a time when Leah wouldn't want to swallow then what's the friggin point?  But anyway - one less thing to worry about.  

This morning we gave Leah a bath and did her bandages -- so she's much more comfy and smells alot better.  Awesome nurse Adrianne hooked us up on the bath -- she cleaned the entire tub, found a tub liner, taped it to the tub for us, and then made up Leah's bed all comfy cozy while Jeff and I were crouched on the bathroom floor trying to soak and cut off Leah's bandages. 

When I arrived home today I called Jeff to let him know and he said someone from surgery had come in with the consent form for him to sign and told him that the surgery will happen sometimes between 8 AM and 12 tomorrow morning.

So ............... please please PLEASE (I don't mean to yell - that's more of an urgency capitalization) be in prayer for Leah tonight and tomorrow.  Tonight for her to continue to take her drops of liquid and have some amount of comfort and peace .... and for tomorrow for her surgeries to go off without any problems.

Thanks everyone for their prayers, love and support!!!!!

P.S. And thanks to whoever it was exactly in Jeffs group of friends who wanted to come by the hospital to see Leah.  (Erik I know you called but I don't know who else was in on the plan). You guys are super sweet and I know Leah would love visitors but because we are on the Respiratory Care Unit and the whole H1N1 thing is still going on, they are limiting visitors to parents, grandparents and caregivers.  I just wanted to explain that because I know Jeff didn't know why I said you guys couldn't come - it's the hospitals rule - not mine. 

Sunday, December 27, 2009

In the hospital (Day 2)

Hello again everyone.  I'm home from a long day at the hospital.  I was there from about 8:45 this morning (which is about when Jeff left to go home) until after 8 tonight and I left the room just once to speed walk out to the bathroom near the elevators.  (The bathroom in Leahs room is shared with the patient next door so I don't want to carry germs from the bathroom into her room so I'd rather run through the hall to go pee).
Grandma Judy is there with Leah now so Jeff and I can (hopefully) get some rest here at home before heading back to the hospital to start the week.  We knew nothing would really happen this weekend but tomorrow all the GI docs should come to talk to us about what their plans are for the little lady.   Weekends at hospitals are a joke ...... I had two separate 'doctors' come into the room today; one ENT doc and one derm doc, who looked like 16 year olds who stole some white lab coats and wandered their way into Leah's room.  I gave the ENT guy a break cause I know EB ain't in their textbook - but the derm doc asked me if anyone else in the family has EB.  And then when I explained how Leah is pretty much totally bandaged he had the nerve to ask if it would be too much trouble for me to unwrap something to show him ............ uh yeah - it is, considering you've never seen her before and don't know what you'd be looking at anyway and you sure as s*#t aren't going to be able to help me bandage her back up.  Well, I didn't say it like that but rest assured I didn't disturb her bandages just so the lookie lou weekend Junior doc could take a peak. 

Leah's NG tube is still in place and she hasn't managed to dislodge it ........ it's tied in place with a trach tie that's wrapped around her head .... I'll get a picture of it tomorrow ........ it looks a bit odd but it's doing the job of holding the tube in place without using tape on her face.  The nurse from last night thought it up and said that's what they use on burn victims. 

So she's had a whole 24 hours worth of continuous feeds, which are her 24 calorie per ounce formula, with some extra Pedialyte mixed in to cover our butts on the hydration front.

I didn't manage to get any smiles out of her, though I did everything short of standing on my head to try to get one out of her.  But that little twinkle in her eye is coming back .... along with her stubborn personality.  Hopefully tomorrow I'll get a smile, or at least her trademark smirk out of her.

Thanks everyone so much for the prayers and well wishes - we need them now more than ever.  I know they're helping to keep her calm and comfortable so we can get her prepared for her G tube surgery in the next couple of days.

Saturday, December 26, 2009

In the hospital

Hi everyone.  This'll be quick because I'm on little sleep and spent almost the whole day in the hospital.
This whole G tube thing will probably be happening within days.
Leah pretty much stopped eating mid-Christmas day.  We have the equipment to put an NG tube down into her belly to feed her but I think her throat is so swollen that the tube was kinking on its way down.  So today we packed her up and drove into DC to go to Children's.
Even in the ER it took 2 different nurses to get a tube down, and they had to use one with a stylus (I think that's what it's called .... its a flexible, yet somewhat stiff metal wire that goes inside the tube to help it get down) and had to sit her up and flex Leahs head forward to get it down. 
So she's on our old 'home' floor, the Respiratory Care Unit (RCU).  She's only there because she has a trach .... not because she's having any kind of trach issues.  One of our favorite nurses from when we were there in July was working and was so happy to see how big Leah has gotten.  And she was surprised we remembered her, but how could we not?! She took care of Leah for 4 days straight and was so great with her back in the summer when we basically lived at the hospital.

Jeff is there with her now while I came home to sleep and will head back to the hospital as soon as I get up tomorrow and pack up whatever we'll need for the day. 

So please please please please pray for Leah ........... this house is always so cold and lonely without my little girl here.  I want her back home with me, all better and ready to start packing on some pounds.

Wednesday, December 23, 2009

Gift for Leah and Merry Christmas to All!!

Here is a new video I made for Leah over the past few days.  The song is 'Stille Nacht, Heilige Nacht' (Silent Night) sung by Greek recording artist Nana Mouskouri.  Silent Night was written in German and is meant to be sung in German and this is probably the best version I've ever heard.

And since this will most likely be the last post until after Christmas:
For everyone out there: I hope you all have a very
Merry Christmas!!!

(I'll be sure to post pictures and stories of Christmas just as soon as I can!) 

Tuesday, December 22, 2009

Ain't nothing but a G tube baby!

Yes, you read that title right. Sorry, but I have to bring some kind of humor to it. 

We have come to a decision that we are most likely, definitely probably, going to have a G tube placed in Leah sometime in January.  I think we've been walking a path towards a G tube for some time now.  I haven't written about it until now, but Jeff and I have been discussing it for awhile - trying to figure out what is best.  As of a few weeks ago I had come to have some peace about the idea and had decided to move forward with it and was hoping to hold off on it until after Leah's 1st birthday.  However, as we've been weighing her these past few weeks - the numbers are not good.  Her eating hasn't really changed - but she is getting taller and is not taking in the calories she needs to facilitate that growth.  If this growth with no weight gain continues -- we'll be in big trouble. 

So, I went onto Children's National Medical Centers site last night and requested an appointment with a GI doc.  Once I know the day of our appointment I will contact everyone at Children's (Leahs dermatologist, the Wound Care specialist who is very familiar with EB, etc.) to get coordinated and share all the info we'd need to get it done.

It's a big decision ..... and it sucks.  I hate that I have to debate in my mind whether or not to voluntarily put my daughter into the hospital to have a tube inserted into her stomach just to successfully feed her the nutrition she needs

For those who don't know - placement of a G tube is quite common in EB'ers.  Leah will not be the first EB baby with a trach and/or a G tube ... and unfortunately, she won't be the last either.  Damnit I HATE this disease with every fiber of my being. 

On the bright side, Leah's trach actually makes the decision easier.  While intubation is a big concern with most EB kids .... Leah won't need it; she's already got a tube in her throat. 

I think that if we continue as we are now, without a G tube, Leah would die ........ then again she could die with it ........ or, (a real slap in the face), because of it - should the site get infected and should that infection spread.  However, at the end of the day, I can't hold off on this just because I don't want her in the hospital or I'm worried about what might happen if it gets infected.  I know what will happen if we flat-out don't do it (but I already wrote it once just a few lines up and I don't like talking about that) .......... and I'm not about to let that happen.

So I feel like I've done my part ....... thinking about it, praying about it, discussing it with Jeff and coming to our decision.  Now it's up to the doctors, and ultimately: God, to see that everything with it goes well and Leah comes home ready to put some weight on. 

A G tube would take a lot of the pressure off.  So much of my day is spent trying to get Leah to eat, counting her intake of ounces so far for that day, comparing this day to yesterday, counting the hours between the last bottle and the next one. 

Leah only really eats well for me, and Ann at night ....... so during the day when Jeff is home, I can't stay out of the house for long periods of time.  I'm constantly looking at the time to figure out when I have to finish up whatever I'm doing to get home to feed Leah. 
With a G tube I wouldn't have that worry.  We could have cuddle time or play time as long as we wanted - without me having to piss Leah off by trying to feed her.  I could drive her up to Philly to visit my family ....... or in the spring and summer I could take her to my families shore house in New Jersey without worrying about where, when and how to feed her.  (I can't wait to show Leah the ocean - and eventually teach her to play Skee Ball).

Sorry to have to write kind of a bummer post so close to the holidays but I just wanted to get the word out - so thanks for reading and please continue to pray for my little sugar dumpling.

Saturday, December 19, 2009

Snowed In

If you've heard anything about the snowstorm going on here in Maryland and along most of the east coast, then you know just how much snow we got last night and today.

See this?

Yeah, neither can I really.  Sorry, but I took this when it was already dark, through a sliding glass door ..... but it's the top of our 18" ruler sticking out of the snow.  We put the ruler out on the back patio early this morning when it was just about up to 6".  It looks like it's up to 17".  And I believe we're getting even more snow tonight.

But it was fun to be stuck at home with Jeff and Leah today.  Jeff was supposed to go to work at 5 but obviously, he didn't have to go.  I think once we heard on the news that Prince Georges' County cops were escorting non-essential personnel that they found on the roads home - we knew he'd be staying home today.  It was nice; I made a double batch of pizzelles while Leah napped and Jeff watched her.

Speaking of the little lady ..... she's been doing really good lately.  Eating very well, her ear seems to be getting better (which I think go hand in hand) and her face is starting to look really good.  (Healing wise .... that is).   She always looks like the cutest thing ever.

Here she is from the other night:

And here she is from just a few hours ago:

Please excuse the cotton in the ear.

Oh and I've got to write about my new set up for all our dressing supplies.  Since my whole life is Leah and taking care of her - I get super excited over stuff that makes our lives easier.  I went online to look for a new organizer for her supplies that we use during her dressing changes and found a Lock N Lock product on QVC.  It's AWESOME!!!!
It's 6 separate 6 x 6 x 2 boxes that stack one on top of the other and snap together.  There are 2 lids so I can have 2 different stacks - or one big stack.  Then when we're ready to bandage - we just disconnect them all and lay them out flat.
I friggin love it.

One has just gauze. another has pre-cut blue line tubifast and green line tubifast, and all the others have pre-cut pieces of Mepitel, Mepilex Transfer, Mepilex Lite, Regular Mepilex and Restore in varying shapes and sizes.

And then there is my pink carry basket that holds all the other things I need ..... extra pieces of everything, as well as all the silver products that I don't like to take out of the plastic and pre-cut before I need them. 

And then there are all the creams that I store in old Alwyn Cream jars ... all together everything makes up 'Dressing Change Central':

(1 of the jars is actual Alwyn! Another is diaper cream and the 3rd one is Derma Gran -B).

Ah .... organization .... it's always everything I ever dreamed it could be.

Thursday, December 17, 2009

Leah in 4-D and other stuff

I realized the other day that it was this time last year that we went and had a 4-D ultrasound done to see Leah!! She's always been the cutest little thing I've ever seen:

Well, Tuesday was even crazier than Monday around here since Jeff's sickness had officially kicked his butt.  He spent the entire day upstairs in bed so I spent the day doing my regular stuff (cleaning bottles, making bottles, doing laundry, readying Leah's supplies, cleaning Leah's supplies, cleaning the house, etc.) and then when Leah would settle in for a nap or zone into one of her TV shows, I'd run up to take Jeff juice, medicine, and shots of cough medicine. 

He is finally starting to feel better but he still has to wear his mask when he's around Leah and he's sleeping on the air mattress in one of the spare rooms so he doesn't get me sick.  And I've been drinking Alka Seltzer Immunity Complex twice a day.  That stuff tastes just wonderful!! (That was meant to be sarcastic).

Let's see, what else.....

My Mom sent Leah this early Christmas present.  It's a big ol' round pillow that looks big and comfy enough for a large dog.  Leah just sinks into it like a cloud.

And here she is sleeping this morning, like the little angel that she is:

Pay no attention to the red scab on her forehead ...... I just went and checked on her and she has already brushed it off so her face looks really good this morning.

I think she has picked up a smidgen of Jeff's cold.  Nurse Ann said that Leah had more trach secretions than normal last night, and that her nose was a bit runny.  I haven't heard her sneeze or cough yet today and she feels nice and non-feverish.  She had her last bottle between 4 and 5 AM and so I'm just going to let her sleep in as long as she wants to so she can get her rest.  I turned up her cool mist humidifier and put some Baby Vicks on her chest.
So hopefully today we can just have a nice quiet snuggle day and she'll be feeling much better.

Monday, December 14, 2009

Manic Monday

Today was full of: a shopping trip to Target, a surprise visit to the pediatrician (for an ear infection!), shopping at Babies R Us/Toys R Us, shopping at the grand opening of a new Aldi's, and dealing with Jeff's cold.

So lets see ........... sometime yesterday I started noticing Leah playing with her right ear.  She didn't feel feverish - and was her normal self otherwise.  I kept an eye on her and at some point last night and into today she started doing the finger into the ear canal move .... so I knew a trip to the doctors was in our future.
So my plan was to do my Target shopping early, and then call the docs office when the early Monday morning rush of sickie kids was over and done with.   I called around 9:30 and got an appointment for 11:00.  We went and had Leah's ears looked at - and she does have an ear infection.  She was playing with her left ear a little bit as well but Dr. Brown said her left ear is perfect - but the right is infected.  So we have ear drops and Amoxicillin for the little girl. 

Being an EB baby, it's so hard sometimes to detect when something is 'off' with Leah.  She has a tolerance for pain that is unfathomable to me.  So while an ear infection in a 'normal' baby would be easy to see .... with Leah I have to watch her like a hawk at all times to see if and when her mood changes and for what reason. 
If I hadn't had my eyes on her the few times she stuck her finger in her ear, I might still be sitting here wondering if she's just playing with her ears, teething, had swimmers ear from all the moisture her humidifiers create ...... or what. 
I guess it's a good thing that, until I had Leah, I had never in all my 27 years so much as held, fed or diapered a baby.  Yep, it's true.  So in a weird way it's a blessing that I don't know what 'normal' is when it comes to a baby.  I only know what 'normal' is for Leah - and what to look, listen, feel and sense for. 

But anyway ........... when we came home from the doctors I did a crazy thing.  I went to a Babies R Us/Toys R Us store .... 10 days before Christmas.  And I didn't even go for toys!  They had a 'buy 1 get 1 50% off' sale on Mam pacifiers and bottles.  Mam binkies are the only ones Leah will use .... and boy does she use them.  Notice how many binky pictures of her there are?  Yeah, she likes her some binky.  But with her recent appetite/eating difficulties, I decided to try the Mam bottles as well.  I've only ever seen them sold at Babies R Us stores .......... so alas, I had to go there.  It was nuts .... close to scary nuts.  The looks in peoples eyes as they are hunting down whatever toy their kid/grandkid/niece/nephew is demanding this year.  ::Shivers::

Then on my way home I stopped by our new Aldi's store that was having it's grand opening today.  I love being cheap ... er, I mean 'frugal'.  A gallon of milk for $2.69?  Yes please!  Oh and they sell real chocolate milk .... made with whole milk.  None of this 1% nonsense.  They really think people who want chocolate syrup mixed in with their milk want lowfat milk?!  Come on now.   
But anyway, once all the lookie lou type customers that were there today stop shopping there, it'll be great.  I heard way too many people saying things like: 'What is this?! I've never heard of this brand!'.  Of course you've never heard of it ..... it's a pound of sausage and it costs 75 cents .... you're at Aldi's ...... duh!

Oh yeah and Jeff has a cold so we've been dealing with that all day and trying to keep him and his germy self well-shielded with a mask and gallons of hand sanitizer.  He started feeling sick on Saturday and I begged and pleaded with him to go to bed, medicate himself, rest, nap, sleep, watch stupid DVD's that I don't want to watch with him, whatever .... just rest to get better instead of worse.  Well, he didn't listen to me and didn't rest and now he feels worse.  ::Sigh::

So if I could throw in a few prayer requests here:
Please pray that Leahs ear infection will get better ASAP - that she will take her medicine like a good girl.  And that with her ear infection healed ..... her appetite will improve .... or at least that the new Mam bottles will be the ticket to getting some more food in her. 
And please pray that neither Leah nor I will catch the cold that Jeff has.
Oh and for Jeffs cold to get better and for him to have the wisdom to listen to his wife every once in awhile. 
And....... onto some 'Thank Yous' I need to say (write):
Thank you to my Mommy for coming down to visit us, and for Leah's Lenox ornament, and bringing me some very well-missed goodies from Philly!
Thank you to my 'Seeeeestor' for coming down for the visit as well, and for Leah's Christmas ornaments, and for getting me my monthly gross supply of soft pretzels!!
Thank you to Grandma who came over last night to stay up and watch Leah - and for cutting the elastic out of a whole pack of diapers for me. 
Thank you to my Aunt Pat for sending Leah her very first 'Baby's 1st Christmas' card.
Thank you to my Mom's co-worker and long-time family friend Jeff for making a mixed CD of Christmas Cartoon songs for Leah.  It will be her bath-time music from now until Christmas, and probably awhile afterwards too.
Thank you to my gaggle of awesome cousins (Patti, Chrissy and Joey) and their families for their generosity in giving up some of their Christmas 'cheer' and selflessly handing it over to us to lift some of the worry off our shoulders.  I love you guys!
Thank you to some of our extended family (Edie, Katie, Alison, Rich and Daniel) for joining in the sacrificing of Christmas cheer and sending it to a certain little lady named Leah. 
Thank you to some of the folks my Mom works with who sent her down to Maryland with some donations for us to make our holidays a bit brighter.
Thank you to our good friends Marty and Tina for their initiative and diligence in starting to plan Leah's fundraiser. (More news on that as it happens).
Thank you to all the new folks who are stumbling upon our blog and taking a minute or so to read our stories and leave a comment of encouragement. 

Friday, December 11, 2009

Oh Tannenbaum

Here is Leah's 1st Christmas tree!!!

Can you tell what the theme is? That's right ........ butterflies!!!

There are 4 strands of butterfly garland ........

12 sky blue Gossamer butterflies ..............

12 lace white butterflies ................

4 big glittery butterflies ........................

And I realize this is an angel but I found a couple that had decidely butterfly-esque wings:

And a few other ornaments - like:

Leah's Baby's 1st Christmas ornament (it says: Little Princess, You've Arrived!)

Leah's Noah's Ark Baby's 1st Christmas ornament:

My cross/Bible verse ornaments ................

My nativity ornaments. Here is Mary - she's so cute!

My Baby's 1st Christmas ornament (teehee) ......

I made this way back in nursery school! 20+ years and still going strong

And of course, our angel ...............

And then there's the angel that goes on top of the tree ...............

Thursday, December 10, 2009

10 Months Old Today!!!!!

Hi everybody!!! It's Leah here. 

Mommy says I did such a good job blogging for my 9 month birthday post, that I can do the 10 month post too!!!  It's so precious that so many people read my page just to see how I'm doing!

Let's see .... what's new with me?  Well, I'm still super cute -- but I'm sure you already knew that!! ; )  Can you see my pretty blonde Aquaphor covered curls?:

That's right .... eat your hearts out!

What else .....  Oh! My eyes feel so much better!!! Did Mommy tell you about the boo-boos I had on my eyes?  They made me feel icky.  So I'm glad they're all better.  Mommy has to put drops in my eyes a lot .... and I don't like it at first ..... but as soon as I feel the drops seeping into my eyes I calm right down.  Aaaahhhhh .... there's a reason they're called 'Refresh' drops!
Now I can watch all my favorite shows again cause my peepers feel so much better!! I had to catch up on all my Sesame Street, Handy Manny, Tigger and Pooh and Imagination Movers. 

One of my favorite new things is Mommy's version of 'This Little Piggy'. She does this crazy thing where she'll grab each of my toes and says she's going to eat them but first she needs to season them so she'll say "On this piggy I'm gonna put mustard ... and on this piggy I'm gonna put mayo .... and on this piggy I'm gonna put A1 sauce .....".  And then when she's done 'seasoning' each toe she pretends to eat them!! She's crazy ........ crazy funny! It really makes me laugh.  Oh and now she'll say that there's cheese in between my toes and she tickles between each toe and says "Here's some mozzarella ... and here's some provolone ....".  Oh man tickles feel so funny!!  I don't know whether to freak out or smile so I just kinda freeze with a half-smile on my face and twitch - but no way I'm pulling my foot away from her!

Mommy keeps telling me about this Santa dude.  Apparently he's this jolly guy that comes down the chimney (?!) and will leave me gifts under the tree and in my stockings ... remember I have 3?  I don't know - it seems kind of strange to me.  It seems like a lot of things that don't live here come down the chimney ..... there were all those wasps in the fall .... and that bat in the summer.  Maybe we should reinforce the chimney for some security or something.  Mommy is a city girl ..... you'd think she'd be concerned about it but she keeps telling me that we want Santa here and I will be very grateful when I see all the things the elves made for me.  Mommy told me the elves are all done making my gifts - but they are working overtime to wrap everything.  But they get paid for overtime in cookies so it's all good!

Here I am sitting under the tree since Mommy says I am her gift this year:

Mommy wanted me to tell you that she will post pictures of the tree tomorrow since all her ornaments finally showed up and the tree is done.  Did you know that I watched that crazy lady decorate the tree 3 separate times until it was 'right'?  Sheesh!
Anywho ........... I am a champ at sitting up now!  Not on my own ..... I still want Mommy right there with me.  But she sits me up on her knee while we sit and chat, or watch Sesame Street, or my favorite Christmas special .... Rudolph the Red-Nosed Reindeer!  Have you seen that?!  It's so cool!!!  The snowman is my favorite character and my favorite song is the one the elves sing for Santa. 

We also sit like that and listen to the music channels on the TV and Mommy makes me dance.  She says it'll count as my physical therapy to help develop my core ....... I just think it's fun to have Mommy bounce me on her knee and make me shake my groove thang.  I've got some sweet moves baby!

Oh and I looooooooooove books!!! (Just like Mommy, Aunt Joanne and Nana).  Everyday Mommy sits with me in the rocking chair and we read book after book.  I love my Alice In Wonderland book, and my Mothers and Daughters Storybook Bible, and the Caterpillar book.  Mommy says Santa is bringing me lots of more books! 
One of my new favorites is 'Christmas in the Manger'. It's all about Christmas!! This is my favorite page:

I always try to grab the Baby Jesus with my hands. Mommy says that's cute because everyday He holds me in His hands.
And then when I'm tuckered out from grabbing at the books and (trying) to help Mommy turn the pages - and I'm content to just listen to her voice, I'll snuggle against Mommy and she reads to me from 'Little House on the Prarie'.  Mommy says she has the whole series since they were some of her favorite books when she was little - and so we're going to (slowly) make our way through them. 

Oh and we're trying to get my face a little bit healed up for all the pictures everyone will take on Christmas .... so Mommy has been slathering my face in cream.  It makes me look like this:

I ain't too crazy about it but I know Mommy's heart is in the right place so I'll let it slide.  I think it's working though ..... what do you think?

Mommy and me are really tight! We spend everyday together hanging out and it's great. Mommy says taking care of me is the best job she's ever had and she wants to do it for a long, long time. Mommy never really told anybody this - but since I was there I can tell you about it - and I'm sure she won't mind. One night when I was in the hospital after my trach was put in, Mommy and I had a little talk.  Daddy had gone home to sleep and the nurse was outside so it was just me and Mommy. At the time I was still pretty drugged up and out of it - but still awake enough to know she was there, listen to her and grab her finger - so me and Mommy made a pinky swear. She promised me: 'I won't give up as long as you don't give up'. And I ain't giving up anytime soon - and I know neither is Mommy! So put that in your pipe and smoke it - EB!

I wanted to say 'thank you' to everybody out there for all the prayers and love you send my way.  Mommy says it's amazing how people who don't even know me can love me so much - and she says it's even more amazing to watch prayers answered right before her eyes.  You guys prayed for my eyes and my eyes got better.  You guys prayed for my appetite and the very next day I started eating better.  She thinks it's amazing but it's super cool for me because everyday I can feel all the love for me.  It's so great!! And I really appreciate it so keep it a-coming! 



Monday, December 7, 2009

Raising funds for EB

The other day I received a comment from my buddy Blanca regarding raising funds for EB.  Thank you so much for asking Blanca!  You are so sweet and your comments always bring a smile to my face - but since you gave me your number in the last comment, and I didn't know if it was your personal cell or home number; I didn't want to publish it for the sake of your privacy.  I am, however, more than happy to answer your question!

So I guess there are a couple of ways to go about it.  Anyone can either donate to EB in general, or donate to specific EB families.  So .................

Anyone can always donate to DebRA - as their website states: 89.2 cents of every dollar goes towards supporting EB families as well as research for a cure.  DebRA is a great organization - for example, when an EB baby is born, they send out a care package to the family full of wound-care products to try out and other EB necessities that families just don't know about as they are bringing their new baby home. 

DebRA also offers these bracelets for purchase on their page:

The bracelets are only $1.00 a piece and they are a great way to spread awareness.  You could buy a couple dozen and take them to your church, synagogue or workplace and sell them and in turn donate the money back to dEBra.  It's win-win -- raising awareness and raising funds. 

Or ..... you can donate to EB families.  
We have a donation button for Leah on our page, and there is a support group for baby Jonah that handles donations, as well as selling these magnets to help spread the word on EB while raising money.  Sweet little Daisy accepts donations on her page as well.
Each family is different so please check their pages for info on if or how they accept donations.

We use any money people have donated so graciously to us to defer some of the cost of the things we have to purchase to care for Leah.  And of course different families allocate the funds in different ways.  Some families need to offset the cost of wound-care supplies -- which are crazy expensive. 

We are blessed that our insurance currently covers everything from our God-send of a nurse: Ann, all the way down to the dozens of rolled gauze we use every month. 

However .... there is a barrage of 'everyday' things that EB families go through like crazy that no insurance of any kind would ever cover - our biggies are: Baby Tylenol, Baby Motrin, Baby Benadryl, Aquaphor, Diaper Cream, Vaseline, Aveeno Baby Products, Vitamins, Antibiotic cream, Anti-itch creams, Eye drops, Eye ointment, Baby wipes, Hand Sanitizer, Disinfecting wipes, Stain removers; etc. 

So there you have it!! And thank you so much for asking!!
(If I find more blogs/sites of EB kids who accept donations I will edit this post to include them).


Thanks again to everyone for their love, prayers, support and dedication -- I'm in awe of all the love coming our way.


Today is tree decorating day!! I will post pictures of it once it's completed but I'm waiting on a delivery of some ornaments so it may not be today or tomorrow.  : )

Saturday, December 5, 2009


Welcome winter!!!  It snowed in Maryland today!

Leah's doing really good.  Her appetite has improved - so thank you to all for the prayers for that!  Her eyes continue to look great.  She did have a little case of the sniffles yesterday that has seemingly gone away.  Perhaps miraculously .....
There was about an hour and a half yesterday that she had a lot more trach secretions than what is 'normal' for her, slight snot bubbles coming out of 1 nostril, and she was a tad warm.  She was a bit fussy and she kept rubbing her cheeks (just what we need!) in a way that seemed to say 'I don't feel good!!!'.  She continued to eat well, and was still smiling ..... so I just tried to keep her warm and happy with doses of Tylenol every 4 hours.  I knew she needed to rest but had trouble getting her to take a nap. 
Now, when I'm sick - I'm a pain in the butt.  I don't want to sleep, I don't want to eat and I don't want anyone to try to get me to sleep or eat.  It basically boils down to: 'Hold my hand but shut up and don't bother me'.  (Just ask my mother or husband ... they'll tell you).  Leah had taken a tiny nap around 3:30 but had been up the rest of the evening.  So somewhere around 8:30 I decided to embrace the fact that she seems to be a lot like me and gave her a new dry diaper, wrapped her in a blankie, held her against my chest and held her little hand as we sat in the glider, rocking and listening to music.  Sure enough after about 3 minutes she was out like a light.  And slept like that until Jeff came home around 10:00. She ate well overnight for Nurse Ann and continues to seem like regular happy little Leah today!

Today Jeff and I went out to get our Christmas tree while Grandpa and Grandma watched Leah while she napped. As we were leaving Jeff said something about how we were just going to get a small 5' tree.  Yeah right.  A tree that's 8 inches shorter than me?  That ain't Christmas.  So our pretty 7' Frasier Fir is sitting in the garage until tomorrow.  Then I hope to set it up in the living room and then let it settle overnight so I can decorate it on Monday.  I LOVE to decorate trees and last year I was starting to feel too uncomfortably pregnant to care about it so I have to make up for it this year!

Here's some new pictures of Leah over the past few days:

'Gimme that darn remote Dad .... I don't like football'.  (I told you she's like me)

Thank you again for praying for her appetite, and continued good luck with her eyes!  Our days would be very long without feeling the love and prayers coming in.

Thursday, December 3, 2009

Eye Update

Just a quick update on Leah's eyes since we just got back from our appointment with Dr. V (and Jeff is out picking up lunch for us).

Leah's eyes look fantastically fully healed and beautifully all better!!!


Both eyes look terrific; not just the old abrasion ..... and the newer abrasion doesn't just look 'a little bit better' .... they both look completely healed. 

We have to continue with our regimen of drops, ointment, and the cool mist humidifiers to keep it that way - and I will; faithfully.  I don't want her to feel that pain again and I need to keep seeing those beautiful big blue eyes.

Wednesday, December 2, 2009

Christmastime is here........

First of all - I want to remind everyone to watch the Discovery Health Channel at 9:00 PM (EST) tonight to watch 'Truth Be Told: I Have a Special Needs Child' which will feature the Sheridans and their beautiful daughter Samantha.  Sam has RDEB. 

As for the Christmastime part of my post .... last night after Leah's bath, trach change, trach collar change and bandage session, we took her over to Grandma and Grandpa's house to see their backyard Christmas display.  We figured we had to do it on a night when Jeff was home, it fit into her eating schedule, and it wasn't raining or 30 degrees outside.
Leah was such a good girl the whole time.  She got to see all the pretty lights, and hang out with her lil cousin Nathan.
You can't see it in any pictures but her sleeper outfit said 'Snow Cute'.  Haha.  She also had double socks and 2 big flannel blankets wrapped around her.

Daddy got artistic with the pictures he took:

I'm not so artistic:

Leah and Nathan talking about this 'Santa' character everyone keeps telling them about.
P.S. Can you tell Jeff looks like his Dad?

"Ok, I'll unwrap this one .... you watch and see how it's done"

My little star.

Grandpa, Nathan, Grandma and Leah.  Nathan was more interested in the TV than by what was going on.

Baby covered Grandma.

We started a tradition of the Advent Calendar .... and yesterday was the first day!! So here is Leah with her calendar, prior to opening door 1.

And here she is after we opened it ...... I can't say she was overly enthused about the whole thing.

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