Handle with Care

A little something I've been working on during the mornings when Leah is still sleeping soundly:

Catch it before YouTube changes their mind and won't allow the song to be played because of copyright issues. 

My name is Leah and I have a coconut addiction......

She was going to town on the coconut oil last night.  Here she is sucking it all off her binky .... her entire binky.

Please note the greasy hands and face, and her entire ignorance of the fact that I was mere inches from her face taking pictures. 

There's a little coconuty drool on the side there Leah .... make sure you don't miss it.......

It wasn't all for nothing: she pooped about 15 minutes after this.  Today is the last day for this constipation causing thrush medicine so hopefully we'll be back to 'regular' ASAP.

If anyone knows of any coconut-based baby food recipes, please let me know!! (Seriously)

Camping with Leah

Well not really camping - Leah likes it when I take a blanket and create a tent over us.

Here's how much she likes it:

Pardon the pink tinge but pretty much every blanket she has is pink, so our tent is pink too.

Leah hearts coconut oil & Mommy complaining

Something Leah has gotten from her father: a love of coconut. Here's the back story: weeks ago when Leah had thrush, I used coconut oil to get rid of it. It seemed to also have a laxative quality to it. Well, the thrush came back (if you recall I said we had won the battle with thrush - not the war). So I called our friendly nurse practitioner and she called in a script a week or so ago. The medicine seems to be working just great, but it has appeared to constipate Leah a bit. So I brought out the good ol' coconut oil yesterday.

I keep a little measuring cup of it within reach on the coffee table and periodically dip her binky in it. She loves the stuff. Here's what she does:

She'll suck all the oil off the binky, making her saliva nice and coconuty and oily. Then she'll spit out the binky, and take her hands and wipe her drool all over her face. Then she licks her hands to keep tasting the coconut.

At this point the more greasy her face is, the better. She began rubbing her face just above her left eyebrow a few days ago and gave herself a nice little, not quite dime-sized blister. I keep trying to cream it but she just keeps on a-rubbing.

Other than that her skin is looking a bit better. We've had a huge problem with her back recently. Her whole lower back right down to the top of her little bottom had to be covered and we had a do a belly wrap. After a few days of that it looked improved this morning but it'll be awhile before it's totally healed.

Her right arm is clear, the only issue on her left arm is on the inside of her elbow - and it's healing nicely. Even her legs are healing up nicely.

As for me, I've been in a funk lately. (I warned you in the title that I would be complaining - I've always been a whiney bastard). After awhile everything just kind of gets to you. I hate EB. I hate that I have to pre-treat everything Leah wears to get the blood from her ears and 'gunk' and cream residue out of everything. I hate that I can't pick her up like I would a 'normal' baby because she would blister and I would hurt her. I hate that I can't hold her to my chest and walk or dance with her because her trach would press against my chest and hurt her. I hate that I have to order, stock and keep track of bandaging supplies that take up an entire room of the house. I hate that I can't put her in any regular outfits. I hate that we can't go out anywhere because of a.) the arsenal of supplies we'd need and b.) if anyone saw her and made any comment like "What's wrong with her?" I'd punch their face in ... and then get arrested and then who would take care of Leah?  [I realize I need to be an EB advocate of sorts but it's really hard to do when I'm out of the house (on the rare occasions I do get to leave the house) trying to clear my head and escape from it all for a bit, only to have some random Mom with her random non-EB kid see all the diaper cream and Vaseline I'm buying and try to make a joke about it and all I can do is glare at her]. 

I hate that I can't hear Leah talk. I really hate that I can't hear her laugh. And to top it all off I've gone from homesick to home ill.  Maryland is where I live, but it is not my home and probably never will be. Pennsylvania is my home and I miss it, seemingly more and more everyday. My Mom brings me things from home when she visits (like decent food) but it's not the same.

It boils down to: we moved here for Leah & Leah is here, so we are here, so I am here.   

 

Leah and just some of the many people who love her

All of these pictures were 'hidden' in the world of the digital camera's memory

Leah and Daddy on her Christening Day

Leah and Mommy on some random day

Leah and her Great-Grandpa during his visit from Califormia

Leah and her Great Aunt Jody

Leah, Grandpa Guy and Great Aunt Penny

And more from her Christening day (after all the excitment was over and she was pooped out) .....

Leah and her godfather Chuck

Leah and "Uncle" Erik

Teething much?

Another good shot from yesterday:

Yummy Cheesecake

If you've ever been to the Cheesecake Factory, you know how good their cheesecakes are.  Jeff loves carrot cake so every time he goes there he gets the carrotcake cheesecake.  Since I love to bake, I found a recipe online for the actual Cheesecake Factory's Carrotcake Cheesecake and I've made it for Jeff quite a few times.  It's usually for a special occasion and so this time it was part birthday gift, part anniversary gift - though I didn't get around to making this for him until last week. 

So if you think you'd like it, or someone who might, give it a whirl.

Here's the link to the recipe I use:

http://www.cdkitchen.com/recipes/recs/512/Cheesecake_Factorys_Carrot_Cake_Cheesecake31427.shtml

The recipe does seem to have some mistakes/bad advice though; i.e. they refer to the vanilla extract for the cheesecake twice. It also warns against using store brand or generic items. I'm sorry but cream cheese is cream cheese and when you're watching money as closely as I do: the $1.00 Safeway brand block of cream cheese is just as good as the $2.79 Philadelphia brand. (Though I do love anything that says: Philadelphia). And it's rated as a '4' on a 1-5 scale of difficulty, but mainly because they don't tell you how to prep first to save yourself some stress. That's not to say that it's in any way easy, especially if you've never made a cake from scratch before.

So here are you ingredients for everything:

Cheesecake:

16 ounces cream cheese, room temperature

3/4 cup sugar

2 1/2 teaspoons vanilla extract

1 tablespoon flour (can be regular flour or Softasilk flour)

3 eggs

Carrot Cake:

3/4 cup vegetable oil

1 cup sugar

2 eggs

1 1/2 teaspoon vanilla extract

1 cup + 2 tablespoons Softasilk cake flour (while for the cheesecake part regular flour will suffice, for the carrot cake it will not -- sorry but for all my frugality, here is where I'm a baking snob and you must use Softasilk for cakes from scratch). I already noted the '+ 2 tablespoon' conversion factor when using it. Use 1 cup regular flour if you have to but don't complain to me when your cake is unsilk-like.

1 teaspoon baking soda

1 1/2 teaspoon ground cinnamon

8 1/2 ounces can crushed pineapple, packed in juice, drained well, reserve juice

Yes I know they only sell it in 8 oz cans - I don't know why.  To 'drain well' I usually take a tumbler glass or cup and and do a sort of mortar and pestle type action to get all the juice out.

1 cup grated carrots

1/2 cup coconut

1/2 cup chopped walnuts

Pineapple Cream Cheese Frosting: (I have doubled the amount from the original recipe)

4 ounces cream cheese, softened

2 tablespoons butter, softened

3 1/2 cups confectioners' sugar

2 teaspoons vanilla extract

2 tablespoons reserved pineapple juice

Optional finishing touch ingredient: caramel syrup

About an hour before you even plan to really begin, set out the 2 blocks (16 oz) of cream cheese you'll need, along with all 5 of the eggs, and take a medium sized aluminum or glass bowl and put it in the freezer.

Then when you are actually ready to begin, grate your carrots first (common sense, really). I use a cheese grater. It's easily the most time consuming part of the whole process. You'll need about 3 carrots to get 1 cup grated. A few times a great sale on baby carrots has forced me to get those; and I nearly drive myself insane grating a full cup of those things.

Then, it's time to make the cheesecake:

In large bowl of electric mixer, beat cream cheese and sugar until smooth.

Beat in flour, eggs and vanilla extract until smooth.

Take your bowl that's in the freezer and pour the cheesecake batter into it - then place back in the freezer while you make the carrotcake. (The coldness will help stiffen the batter).

Time for the carrot cake part:

In large bowl, combine oil, sugar, eggs and vanilla extract; mix well.

Stir in dry ingredients; mixing well.

Stir in drained pineapple, carrots, coconut and walnuts.

Take a ladle and pour about 1 and a half ladlefuls of carrot cake batter over bottom of greased 9 or 9 1/2" springform pan. Then drop cream cheese batter over the carrot cake batter by ladlefuls; top with large ladlefuls of remaining carrot cake batter. Repeat with remaining cream cheese batter, spreading evenly with a knife.  (Spread if you want but some marbling will inevitably occur, which makes their next note pointless -- I usually just lightly drop the pan onto the counter a few times and it settles the batter).

Do not marble with a knife.  

Bake at 350ºF oven for 50 to 65 minutes or until cake is set and cooked through.

(I have never baked this cake for less than 65 minutes).

Cool to room temperature, then refrigerate.

(I have actually left the cake in the fridge overnight and made the icing the next day)

When cake is cold, prepare Pineapple Cream Cheese Frosting.

Like I said, I have doubled this part of the recipe.  The original recipes amounts will get you just enough icing to cover the top of the cake, and forget about hiding any imperfections in the cake with a thin layer of white icing.  Doubling it gives you a perfect amount; though it is so sweet that it also made Jeff say he felt like his "teeth were going to fall out of his head" - but he exaggerates.

In a bowl of electric mixer, combine cream cheese, butter, confectioners' sugar, vanilla extract and reserved pineapple juice. Beat until smooth and of spreading consistency. Refrigerate 3 to 4 hours before serving (Jeff usually gets to it before then).

And if whoever you are making this for loves caramel as much as Jeff, you should definitely do some kind of decorating with it.  For Jeff I usually do this:

Enjoy!

Playtime on the Bear Mat

"So many toys to play with!"

"Now, now. Horsie ... Big Bird .... I love you both the same"

At some point there was an altercation between Leah and her Hippo.

First, things were just hunky dory.

Then I think the Hippo said something to upset her:

"Hey - what did you say? Tell me in my face!"

"Let me ask you something Hippo! What did the five fingers say to the face?!"

SLAP!

On the bright side, Leah and horsie and still tight though ...

And my favorite from yesterday:

Disclaimer: I did not put her blanket like this, it just happened.

Sister Leah

Leah in the morning

While I wake up at 6:45 AM, sweet Miss Leah has been sleeping in until close to 9 these past few days.

Who wouldn't, with a set up like this:

She's got one of her Z-Flo positions under her super plushy fuzzy blankets, nurse Ann gave her 4 oz at 2:45 AM and changed her diaper, her trusty lullaby seahorsey is next to her, she's got her cool, humidified, purified air pumping into her trach, and she's tucked in under another super soft super fuzzy blankie.

Nice work if you can get it.

Stroller time rocks

"I'm bored - time for some stroller time!!!"

Since everyone knows how stroller time is so awesome, some of Leah's toys have begun to hitch rides to join in on the fun. First it was Miss Kitty:



Then last night it was Duckie's (aka Jon Cryer - yes we do call it Jon Cryer - we are children of the 80's after all) turn:







This is my view of stroller time - and now that Leah knows where I am during it all, she looks up at me a lot:





We paused for a suctioning and Leah got to enjoy some Monday night football (yuck) from her stroller:




Call me optimistic but I think this looks says: "Football sucks - I'd rather be watching Baseball".


Stroller time is indeed awesome: it calms her down when she starts getting kicky and fidgety, it's exciting to see new things and sometimes we take her for a lap or two in the backyard, and it's soothing to the point of sleep.


This is how last night's stroller session ended:




Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Now if we could only get Duckie to do this, we'd have it made:

Still lovin' her swing

We decided to put Leah's swing back together (it had been disassembled and in the office for a few months due to space restrictions in the living room)..... she likey:

Baby pictures all around

So here is Miss Leah:

Do you think she looks more like Mommy, when I was about Leah's age:

Or Daddy ... when Jeff was about Leah's age:

Just kidding, I just wanted to put that silly baby picture of Jeff up here. He still makes this face, just so you know.

This is the for-real picture, and to be honest I see alot of Leah in the profile shot.

I remember reading in one of my many psychology courses in college about someones theory that mother nature has made it so that a baby often looks like its father in the early months of its life, so as to reassure that father that this is indeed their child. That helps reinforce the bond and then after the bond is strong, the childs looks continue to change as they morph into whatever they will truly look like. Pretty neat, huh?

In other news, we met our new every other weekend nurse today. Jeff and I decided to make a change from who we originally had. She just wasn't very comfortable caring for Leah, nor was she very familiar with all the equipment we have here. We're spoiled by our regular nurse Ann, because she's so great with Leah. We trust her 100% and sleep soundly when she's here (which is almost every single night). But then every other weekend we have another nurse come. So our new nurse will be Julianna and next weekend she will come to do her first shift with Leah. When she came today we gave her a quick run down of all Leah's do's and don'ts and she seemed pretty comfortable with it all. I think she'll do well but we'll see.

7 Months Old & Wearing Clothes!

Leah is 7 months old today!!!

She is getting so big! But that outfit you see her in, its a 3 month size - so .... she's not really that big. I found that outfit on clearance at Target yesterday. $3.98!

And on the clothing front: super sweet Aunt Penny's super nice neighbor who sews like the wind has offered to make Leah some clothes! I took her measurments today and I have asked for some baby kimono gowns for her so I'm super excited to see what our master seamstress can whip together for her. Leah already has one baby kimono (that she's actually wearing right now but judging from it's size it won't last long). But it's way easy to get on her (no stretching it over her head) and way easy to change her in (just untie it and open it on up). So I think those will work really well.


And here is Leah participating in her newest activity:

She doesn't look so happy in this picture - but believe me, she loves it. Basically we just wheel her around the downstairs level of the house in her umbrella stroller. We did 2 separate sessions of this today for about an hour and a half total. I don't know how many times I can make it seem really exciting to be "in the kitchen again!!" but if it entertains her I'll say it all day long.

And finally another picture, here she is being buckled up for safety:

Leah puts the 'Out' in OutPatient

We're home from the hospital!!!!! Forgive me for being so excited but after spending pretty much the entire month of July in there, we were ecstatic to be able to go home less than 7 hours after arriving! We showed up pretty much on time (6:10ish) and as scheduled, Leah was taken back to an OR around 7:30. I managed to not cry while saying goodbye to her as they wheeled her away - probably because she was looking around at all the nurses so those big blue eyes couldn't get to me the way they sometimes do.

Jeff and I went and sat in the waiting lounge. I held Leahs fuzzy yellow ducky and did my mantra that is part-prayer, part-demand: 'Breathe Leah, breathe. Breathe Leah, breathe.' I did it back in July while standing in the hallway waiting for the social worker on the night her emergency trach surgery was performed. I like to think it helped because her surgeon said he was amazed that she had never stopped breathing throughout the whole ordeal.

Around 8:30 Dr. Preciado (Leah's ENT surgeon) brought Jeff and I back to speak with us. He said Leah did great, that she was back in recovery slowly waking up; but that her airway is still being affected by her EB. With the trach she is fine - but without it we'd be in deep doo doo (my words, not his). So the trach is our friend.

Apparently Leahs vocal cords are now appearing "abnormal" while before they were "severely swollen". I don't know what would be 'normal' for a JEB baby with airway swelling and a trach (nor, most likely does the doctor) so I'll take that for what it is. And I can't say I'm surprised by his evaluation: obviously her EB is the reason for her trach and so obviously her airway and throat will be an issue.

Then we got to go back to see her. I was pleasantly surprised that she looked good, despite being somewhat askew in her bed and obviously upset and confused by what was going on. She had a trach-full of blood but other than that she was fine. All the staff there was great with really paying attention to being extra careful with her skin - after we drilled the whole 'butterfly wings' idea into their heads.

The nurse told us we'd be in the recovery room until about 1, when a doctor would come by to see how Leah was doing, and our discharge or admittance would be determined then. Their main concern was the amount of blood in her trach but thankfully, it decreased dramatically after a few suctions. Around 9:30 I gave her about 2 ounces of pedialyte, just to see if she could hold liquids down. After that we did half-formula, half-pedialyte. She drank a good 4 ounces in all and kept it all down. Then I read the entire collection of 'Where is the Puppy?' Sesame Street books (4) to her and just tried to keep her calm and happy. Somewhere around 10:30 she dozed off for a nap.

Then at 12:30 one of the ENT doctors we've come to know well came by to check on us and to our surprise, said we were good to go home!!! Jeff took some bags down to the car while I gave Leah another bottle (5 1/2 oz) to tide her over for the car ride home. Her IV came out, diaper got changed and we were on the road and home by 1:30!

At the moment she's watching Handy Manny and playing with her binky. Jeff is napping on the couch (and periodically startling Leah with his snoring) since we had to get up at 4:30 this morning. He'll wake up in a bit and take over with Leah until the nurse gets here so I can go to bed early.

Alright, I just wanted to update everyone on surgery day!

Visitors, Stars and Prayer Quilts

Leah had a very visitor-filled week!

On Wednesday night her Great Aunt Jody and her Great-Grandfather flew in all the way from California to come and visit! Leah's Great Aunt Penny is also up from Virginia for awhile because Leah's cousin was born just yesterday! (More on that later).

Aunt Jody gave Leah a really cool gift: Leah is officially a star. We already knew that, but now a star has been named in her honor! So somewhere up in the sky is star #323139, now known as 'Leah Elizabeth Turnquist'. Leah got an official certificate of registry, a Christmas ornament, and a CD that tells us all about how to find her star.

Another awesome gift: the church that Leah's great-grandfathers sister belongs to made this prayer quilt and sent it to us. It's beyond gorgeous, with butterflies and ladybugs.

So Faith Lutheran Church in Craig Colorado will be getting a very special thank you card from us but I wanted to post some pics of it here for all to see.

Then over the weekend my Mom and sister came down from Philly to visit. Aunt Joanne brought Leah more books, and Nana had a t-shirt and kitchen magnet from Boston for little Leah.

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Here is Leah's brand new cousin, Nathan Thomas Row.

He's pretty cute huh?! He was born last night around 5:30. Aunt Jen and Nathan are doing great!

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And for those not in the EB world - we've learned of some new leaps in the research for an (eventual) cure for EB. Rather than go into all the details, I'll refer you to the blog of another EB Mom. Patrice is Jonah's Mom; Jonah also has Junctional EB and he was born just a couple of weeks after Leah.

Here is her post on the actual research trials:

http://patriceandmattwilliams.blogspot.com/2009/09/expanded-clinical-trials-for-eb.html

And here is her post on her feelings/thoughts on the trials (she words it pretty perfectly):

http://patriceandmattwilliams.blogspot.com/2009/09/transplant-update.html

Our thoughts and feelings are pretty much the same; yes it is a great thing that science has brought us to this. However, it's not something to jump into blindly and moreover, Leah is most likely too young and does not have any siblings that could be donors for her to be considered for the trials. Nevertheless we too are also trying to gather all the paperwork, tests and other necessary preliminary items to submit to the hospital for consideration.

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And finally, today I'm getting everything ready for our trip to the hospital tomorrow for Leah's follow up surgery (ie. second look at her airway).

Please say a prayer for her tomorrow.

We will be getting to the hospital at 6 AM and she is scheduled for her surgery at 7:30 AM. We will most likely have to stay overnight as well but hopefully this will be a short hospital stay and we can get her home again!

Little boxes made of ticky-tacky

When medical supply delivery days collide at the Turnquist house:

And just one of those boxes was trach supplies. I'm still waiting on a box of new trachs, and a box of her formula. All the other boxes are from our wound supply company.

I went a bit overboard with my order because of insurance issues. Basically, since I left my job at the Red Cross in Philly, Jeff and I lost our insurance. I can continue to cover Leah on a month-by-month basis using COBRA for 18 months for the bargain price of $452 a month. Gotta love COBRA. You get to keep the same exact coverage but it's hella expensive & I really only need/use it for her wound supplies. But then again I have to think of it as: $452/month = any and all supplies we need, bearing in mind that just 1 box of 10 4"x5" pieces of a contact layer we use on a daily basis is more than $80 & and that 1 jar of the special cream we use is $20, it works out well.

But anywho, since I didn't know if we'd be able to afford to keep her COBRA coverage for September, I went and ordered tons of stuff while August was still paid for. I made a bonehead move and failed to put the word "rolled" in front of the word "gauze" in my email to our supply contact so now I have a case of square gauze I can't use. Perhaps I'll donate it to the DebRA foundation.

Of course, we have secondary Medicaid insurance for Leah but the supply company we use does not currently have a contract with Leah's specific managed care program under Medicaid, so we're waiting to see if they can work something out and then I'll know COBRA isn't needed. Ah, the fun I have all day dealing with insurance, paperwork, bills, medical supply companies, supply orders and phone calls. Just while typing this blog I got phone calls from 1.) the infant and toddlers program rep, 2.) the overnight nursing staffs' supervisor and 3.) the case manager for Leah's Medicaid.

Speaking of paperwork and red tape, I finally finished and submitted Leah's SSI application. Now I just have to wait for the paperwork to get here and call to schedule an appointment at the Social Security office. So I'll actually get a chance to leave the house for something - but it sure won't be for fun.

At least Leah knows how to relax:

I went to reposition her in her chair last night so I took her blankets off of her to find her doing her typical stretched out starfish pose. She lays like this a lot - I guess it does look darn comfortable. Trying to burp her when she wants to do this is fun. "Light as a feather, stiff as a board".

There's also the 'relaxed starfish' pose, just a slight variation:

And yes, I will soon be putting clothes on the little girl. Fall is a-coming so we gotta get her used to having some clothes on that little body. It was hard to find clothes for her before with just EB, but now we have collar issues to keep in mind because of the trach. So her wardrobe is limited but nevertheless I will find soft, cotton, lace-free, frill-free, applique-free, zipper-free, tag-free, loosely collared, pink, preferably with kittens and bunnies and cutesy stereotypical baby-girl clothing for her.