Tuesday, April 30, 2013

falling asleep

I put Rhys to bed tonight as the sun was setting.  One of my favorite times of the day.

She is as kissable as she looks.




blood transfusion

Emma had blood work yesterday.  We brought Violet along as moral support.  Violet takes her position as sister very seriously, and when Emma was stressing over the appointment prior to leaving, Violet reassured her saying, "Don't worry, Emma.  I'll hold your hand.  I promise."  


A little while later, TS was talking to Violet about them going.  He was saying how he hated going because everything takes so long and it's so boring.  Then he said, "I don't want to go.  I can't stand hearing Emma cry."  When he's with her, he's very caring and looks like he's about to cry too.  But, he's right...it IS boring and it DOES take freakin' forever!

The girls practiced their ninja moves for a little while before the phlebotomist came in.  It's so much easier to have a sibling come along.  Emma is a lot less stressed.  (Usually we don't bring a sibling due to germs and flu season.)


Here she is right after the poke.  I admit that, due to my amazing maturity level, I find it very amusing when they ask her what finger to poke that she always chooses her middle finger.  It's kind of like "Fine...poke my finger, but I'm going to flip you off while you do it."  (She has no idea what the middle finger means, so she isn't really choosing it for that reason!)  I like how crazy she looks in the photo and that she is holding up her poked middle finger...


Not too surprising, but Emma needed a blood transfusion.  For the past four weeks, she's been very tired, but the past two weeks, she's been even more tired.  One day she randomly fell asleep on the couch.  Another day, she was outside playing, riding bikes, and when she was done, she was so exhausted she could barely walk up the drive way and had no energy to put her bike away.  Then Sunday she laid in her bed or all the couch almost all day long.  She's gotten more and more stationary as the days go by.  We don't ask her to do much of anything anymore because she's too tired.

BLOOD COUNTS:
Hemoglobin 6.8
Hematocrit 19.5
RBC 1.71
MCV 114.2
Platelets 23
WBC 1.5
ANC 550

There's pretty much nothing good to say about those counts!  Her red blood cells are very low and very large, which means her body is sending them out before they are mature, in hopes of getting her more blood faster.  But, try as it might, it simply cannot do it.  She has such a small amount of marrow, plus it doesn't work correctly due to her genetic makeup, that it can't make enough.  But, we do appreciate the effort, Little Marrow!

Her platelets are low, as usual.

Then her WBC/ANC is also very low, which means that her immune system is super duper wimpy.  She can get sick super easy and would have a hard time fighting it off.

Pretty much, I'm really looking forward to good blood counts again after transplant!  I don't think we could wait much longer than we are.

Here she is with her IV, waiting on the blood, FaceTiming with her cousin (sorry, some of these photos have bad lighting and are grainy, lighting wasn't the best, and sometimes it's beyond my cameras capabilities when combined with children (as in, they move a lot, so I can't lower my SS down much) and I didn't spend a real long time editing because I am too tired!)


My sister, Siouxsie, came up to bring Ella so I could nurse her and see her for a little bit (in hopes of keeping things easier for Tyler too).  They stayed for a couple hours, I think (?) and she brought food and it was fun.  We listened to some Savage Garden, which I haven't listened to in FOREVER.  The kids liked it, and we had a little dance party.

The kids are looking at photos that Siouxsie had on her iPad.  It was fun to see them and reminds us how fast time goes by because it seems like yesterday those photos were taken, but it's been years!

So, from the time we made the decision to transfuse, until the time we made it upstairs, it was probably 1hr 30min.  Then we got our room, ate lunch (before Siouxsie came), got Emma's IV after about 45 minutes.  Then it was another 3.5-4 hour before the blood actually came.  Emma was about to lose her mind just sitting there, nothing happening (she had TV and her iPad Mini).

They gave her benedryl and Tylenol, like they always do pre-transfusion, and right before they brought the blood in, she got very agitated and upset.  She started crying and crying and crying...and was very wiggly and uncomfortable seeming.  I knew it might be overwhelming to her, but she was acting in a different way.  There was a look in her eyes that made me feel like something else was going on.

This is right after they got the blood hooked up and she was about to get pretty upset (unknown to me, of course!)...

About two hours after she had been given it, someone on FB commented it was probably just the benedryl!  I didn't realize it could make kids feel that way (even though she's done that with every transfusion...just didn't realize that was why).  Emma finally randomly fell asleep - like in the blink of an eye, she was asleep and calm.  Then when she woke up, she was back to her normal self.  While she had bouts of boredom with how long the process was taking (transplant is going to be a bit longer!), she wasn't inconsolable and the "look" in her eye was gone.

In case it's not obvious, I brought my camera along, guessing she would need a transfusion.  You will see wayyyy too many photos of the same scene...because Emma didn't move much, and I had about six hours to take them in.  Though, some of them I used my iPhone (like the photo above).

In case you haven't seen a transfusion, they give an IV and then take some of her blood.  They send her blood down to the blood place.  They type it and match it.  Then 1.5-2 hours later the blood comes.  Then they drip it slowly through the IV, over a few hours.



When it drips out of the IV bag, it drips into this little tube thing and onto a mesh looking thingy.  I don't know why...  Hope blood doesn't gross you out because there's blood involved when it comes to a blood transfusion.



She had a little bit of high blood pressure.  I think the highest was 143/83 or something.  It went back down when all was said and done.  They gave two bags of blood, one was 2.5 hours long to transfusion and then the other was 2 hours.  So, TEN HOURS after we arrived at the hospital, we were headed home.  We got home a little after midnight.



Here she is feeling considerably better.


We had two nurses during our stay.  Both were named Amy.  Both were super awesome.  But Amy #2 earns the award for being an above and beyond amazing nurse.  She was so nice and so compassionate for no reason whatsoever, other than she is just a really caring person.  She was a very motherly, loving person - maybe closer to being a grandmother type of lady.

Emma mentioned she wanted a doll (we always get her a toy after she has something bigger happen).  I told her the gift shop was closed, but that we would buy one on Amazon.  The nurse heard the conversation and came back with this doll.  When she opened the door and showed it to Emma, Emma gasped in happy shock, and you could tell the nurse felt her search (high and low for a doll) was worth the effort just to see a smile from Emma (who had not been having the happiest of nights before that).

Nurse Amy, thank you for being so sweet and caring and working for a smile from Emma.  Bribery is always a healthy way to approach things.  haha.



When the blood was done, the nurse arrived very quickly.  There was no wait to check out.  She had done it all already because she knew we were hoping to head home afterwards, no matter how late it was.  She came in, popped out the IV, brought in a wheelchair for Emma, and we were out.  She's very efficient!  And her helper lady was too.

I'm not sure how Tyler did getting all the kids to bed without me, especially since Ella nurses to sleep at night, but they were all asleep and alive, so I take that as a good sign.  I walked in to see them all sleeping soundly and looking so very cute and sweet, husband included.

For some reason, this made the fact we are going to transplant all the more real.  Part of me is looking forward to it.  I really am.  I want Emma better.  I want to see her go do all the things she wants to do without having to be so worried about germs or whether she has enough platelets or energy.  This has been going on for over three years.  We've tried other things to treat her illness, but it's time to transplant!

While I'm looking forward to her transplant and seeing her healthy again, I am SO NOT looking forward to leaving my babies.  That part just breaks my heart.  I find myself listening to the sounds of our home more often, trying to remember all the little things that are so routine and so normal but that I will miss so much.  Listening to them playing in their rooms, hearing their little feet run, watching Rhys do random, crazy things because she's two and is the most independent little girl I've met, hearing them laugh...hearing them scream and fight, hearing TS tell me all his stories and all the things that interest him.  Watching Violet put her makeup on and showing me the make up she's using, as though we are in a tutorial on youtube.  Watching Tyler hug his babies and hugging me.

I know we're doing this to save Emma, and I know it's the right thing, but knowing that doesn't magically make it okay or not painful that we will be separated for so long from each other and that we will miss time with each other that we can never get back.  Knowing it's the right choice for Emma doesn't change the fact that I will be missing out 4-6 months of hugs and kisses and seeing/hearing all the things going on in their lives during that time...or that Tyler will miss out on seeing Ella grow.

If they were older, it would still be really hard but not as hard in the sense that when they are so little, they are changing so much so fast.  When they are older, they change slower.  Plus, when they are little, I believe children truly need their mother for hugs and kisses and attachment.  I think that's something they always need, but they are able to handle it better when they are a little older.

I absolutely dread giving them the last hugs and kisses and walking away to take Emma to Cincinnati.  BUT, we're ready for her to be better.  Thank goodness for amazing family and friends...and for FaceTime.

Saturday, April 27, 2013

family photos

I'm too lazy to look, but did I confirm that we are heading off to transplant on June 10?  If not, I'm confirming that.  We still haven't figured out how we're getting there (airplane, car, horse, hand cart...), but we'll be working on getting that hashed out between now and then.

Meanwhile, I have a checklist of things I want to get done before I go.  One of them is I want a current family photo.  The reality is that this could be our last chance to do that and I don't want to miss out on having something as precious as a last family photo.  (Though, I don't believe it will be our last photo because Emma is going to get better from her transplant!)

Since we're trying to save money for the transplant, and I love photography, how hard could it be for me to take some myself with a remote control?

<insert my not-smiling-face here>

Why do I never learn?  Actually I kind of had learned from the last time, but I assumed that I'd be able to get at least one good photo...

<insert my glaring-at-you-as-though-it's-somehow-your-fault face>

So, I managed to get all the kids out of their pajamas, brushed their hair (oops, except for TS!), and got them outside.  It was amazingly difficult to get them to sit on the blanket.  They'd sit, get up and walk away, we'd get them sat back down while another one was busy doing something else.

Short story version:  It was very frustrating.

I tried positioning them nicely, but that didn't go so well, so I gave up.

I had thought "Oh yay!  It's an overcast day, that means everyone will be able to look at the camera without squinting."  That didn't happen either.

So, what you see below is the progression throughout our amazingly-not-professional photography session...





Violet looks so adorable in the one above!

I thought I smiled more than this...

In case you hadn't noticed, Rhys was mad in all those photos.  She did not want to sit down and was very upset that we were being so mean as to have her sit with the family...for a family photo.

Photos above, I was feeling very frustrated (they weren't listening, kept getting up and walking away, kept putting their arms above their heads like they were on a rollercoaster ride, etc...).  Plus the camera was being weird with the remote, so that was frustrating.

Photos below, I decided to be done worrying about it.  Clearly it wasn't going to go as desired, so why care?  Everything was suddenly very funny.  (sorry for the brightness of some of them.  I didn't spend much time editing as they aren't going to be hanging on my wall!)






Maybe this one should be our family photo...you might think Rhys is missing, but she's not.  You can see her legs (pink shoes) under my legs).

Then this one could be our "couples" photo.  Can't you feel the passion?


So...that didn't go so well.

Though, I did take the best expressions from three photos and combined them into one:




Then I thought, "Oh, we can get better photos in the house!"

<shaking my head>

I've discovered there are some rules that you should follow when sitting on the couch together:

(a) Don't sit up as high as you can if you're husband isn't doing it too.  Because somehow it makes you look like a ginormous giant.  Tyler is four inches taller than me and weighs about 35 lbs more than me.  But I feel like I look equal to his size...normally he's noticeably a larger person than me.

(b)  Sit on the larger couch.  That way the children on the ends don't look so squished.

(c)  Pay attention to the baby's expression... Six photos in a row, and Ella had a funny face in each one (makes me and Emma laugh out loud looking through them!):



















Ella was about to fall asleep!  We were out of time (as the next 10 photos included her nursing...).

Anyway, so...family photos are upcoming.  This was just attempt one.  The attempt that teaches us all the ways to do it wrong while making funny memories in the process.

I think it'll work much easier when my sister or niece or friend is on the other end!


Tuesday, April 23, 2013

almost a date

Okay, I'm not doing as well as I thought I would do at posting all the stuff I post on FB onto here or vice versa...but I am getting all the important stuff posted on both!

It looks like the week of June 10th I will be leaving with Emma, Ella, and my sister Ani and will be going to Cincinnati to start the transplant process with Emma.  It hasn't been confirmed on their end, but they were the ones that asked about that date, I said yes, and now I'm just waiting to hear "Okay, sounds good."

When we get there, she said we'll have about two weeks of testing, then another week of waiting for the results, and then they'll be able to start the transplant.  Tyler can only take 2.5 weeks of paid time off, so we're trying to fit that in there at the best possible time, probably right around the time they actually start the transplant.  It's really hard that he won't be able to come for more.  He really wants to be there.

Anyway, I'll write more about that once I get it confirmed as there are lots of details to share.

Here are some recent photos...

We went on a walk Sunday.  When I put on my sunglasses, Rhys grabbed some pink swimming goggles to wear as her sunglasses.

I like how it's obvious she can't really see at all, and one of them is totally foggy. I'm not sure she could see well enough to even know I was taking a photo...


It only got worse along the walk!  Like how her left eye is all squished along with her ear?  But she kept them on for a surprisingly long amount of time!

Then for quite a while, she rode around with them on the bottom half of her face.


It was the cause of much entertainment.


Then the next day she put on a her helmet to ride her....tricycle...and she put it on backwards.

Then Miss Emma has been really tired all day.  She fell asleep on the couch for a little while, which never happens.  I'm not sure if she just didn't sleep well or if her counts are lowering more and she'll be napping more often.  She has blood work next week.  Yes, yes, she has awesome pajamas, doesn't she?  hehe.


Anyway, I'll write more later.  Just wanted to update really quick!  If you were interested in following up on our facebook page, too, you can here:
https://www.facebook.com/ourlittletasteofheaven

Saturday, April 13, 2013

random photos

Emma has started eating better again.  Yay!  She hasn't had any issues since she prayed about.  Coincidence?  I like to think it's not.  Either way, we're glad she's able to eat.

She confuses me on her energy level.  She still looks very pale.  I had her walk around the backyard with the baby for a little while yesterday.  She came in soon after and was exhausted.  She hadn't been very active at all.  And, looking at her, you could tell she was exhausted.  It wasn't something she could fake.

Then today, we got out the bikes for the first time this year, and she rode around like a crazy person.  Well, not literally like a crazy person.  We went on a walk around the block, and she rode her bike all the way around and wasn't tired by the end.  I don't get it!  I didn't expect her to last long at all, but she did awesome.  I'm hoping that means her blood counts will be higher this next time.

I haven't been as in to taking photos lately.  I still love it as much, but my mind has been so busy thinking about everything that I haven't put as much mental focus on it.  But, I have taken some, and here they are:

Rhys was wearing a scarf on her head like a hat and wanted her photo taken.  This is her posing.  

The four oldest kids all sleep on a bed together.  They want it that way.  I'm not sure we could sleep at night if they didn't (not like I sleep at night still!).  But TS and Emma always cuddle.  It's sweet.  They have for forever.  I think he's her teddy bear.  Vi and Rhys do too, when Rhys isn't laying horizon to Violet's vertical laying...


Sometimes I forget how old Ella is.  She's 18 months!!  She wanted to write on the chalkboard.  She's almost too short to reach, but it was so cute to watch her!  It's funny to think these two girls are only 15 months apart.  Rhys is on the bigger end for her age, and Ella is just super dainty and tiny.  It makes them look further apart in age.  Oh, and a little funny, Rhys is wearing Ella's pants (so they are high waters) and she has them inside out.  It looked funnier in person.


I was in the middle of doing something in the front room (where the photo was taken below) with Ella walking around by me and playing.  She fussed for a second, and then she stopped, so I went back to what I was doing.  A few minutes later, I noticed she hadn't come back over to me (she is by me a LOT).  I saw her laying down and thought she was playing with the toys (or the wetwipes, which she likes to pull off the shelf and make a mess with!), but she had fallen asleep!  It was sooooo cute!  I also felt horrible that she fell asleep on the floor in the middle of playing.  I always rock her to sleep.  It was really cute.  All the kids came over and were giggling at her.  I picked her up and laid her in her bed.




I'm hoping we'll know soon, maybe this week (?) as to when we'll be able to transplant.  It might take longer, but it seems like it should be coming soon!  We're trying to get plans made for everything so that if it's somewhat short notice, things will fall into place easily still.  

I'll update on all of that more whenever we know more!

Friday, April 12, 2013

Hero Package & Update

I've taken a little too long to update about this, but remember that little fundraising thing we were doing, where we needed to raise $650 to get Emma a "Hero's Package" from Gamerosity?  Well...in just over 24 hours, everyone had donated enough to reach that goal!!  We were shocked.  I like to believe that we might have broke a record there for the fastest fundraising...hehe.  The Gamerosity guy called it "Radical generosity".

I have no idea who donated, but if you did (or wanted to, Rachel A!), thank you so much!!  Seriously, I don't even know how to tell you how appreciative we are of your generosity and help.  We'll post pics when she gets it.  We know she'll love it and it'll make a miserable experience a little brighter.  THANK YOU!

Speaking of Emma...

We still don't know if the other two potential donors are a match.  Hopefully we'll know soon.  We did find out from a lovely friend (Jennifer, thank you!) that 9/10 is a great match.  They used to do a transplant with only 6/6 matches.  So, 9/10 is great.  Of course, we still want the 10/10, but we for sure have options with the 9/10.

Emma seems to be progressing a bit with her failure.  She is noticeably more pale and looks tired a lot.  She's very stationary, but she still feels like she has energy...unless she starts being active.  She is cheerful for the most part, is doing great with her school work (though she does get tired out), and is obsessed with Legos.  She spent like six hours putting together Lego houses and made a little neighborhood with cars and an airplane.  She was following the directions on how to build stuff, which isn't a norm for her to pay attention to building instructions.  It was fun to see her learning...and see her enjoy it so much!

Before we started her on the androgens, she used to be an awful eater. Then we started her on the androgens, and she turned into a ravenous pig that loved everything and would eat tons.  It's been really nice!

Yesterday she couldn't eat much breakfast, ate a small sandwich for lunch, then no dinner.  This morning she ate breakfast, but she couldn't eat any lunch (and she likes it usually).  She didn't eat one bite.  She's not being rebellious.  It's more like it is making her physically ill to think of eating.  It's beginning to stress us a bit to see her skinny little self not eating.  We'll try smoothies, and then ensure, or something, if we have to.

Tonight for dinner, we were really hoping she would eat.  She said the prayer and said, "Please bless my mouth that food will taste good again."  Then when she was done with the prayer, she said, "I think that might help."  Then she paused and corrected herself with, "No, I know it will help."

I smiled to myself and thought, Welllll...if this is part of getting more sick, I'm not sure food is going to taste better!  Then I stopped myself from thinking that and remembered that God does bless for having faith, and Emma has amazing faith.

About 10 seconds after she prayed, she took a bite of her dinner, and said, "Oh, this is good!"  and she ate a ton of food....hehe.  It made me giggle.  Hopefully it'll keep up, but if not, we'll figure something out.

---

And, lastly, here is a portrait Rhys drew of me.  Isn't it beautiful?  haha!


Rhys is two years old.  At this age, she should mostly only be able to scribble.  Closer to 3 yrs, she should be drawing little circles but not anything like this (for average 2 yr olds - for all my other kids when they were 2 yr olds).  We noticed around the age of 24 months that she was a bit advanced with drawing (and with scissor usage since she chopped all her hair off the top of her head!).  She was drawing circles and seemed to have an odd amount of control with drawing at just 24 months.  Anyway, so it's fun seeing her drawing things like this.

I know I have a unibrow in the drawing, but she wasn't finished yet.  My unibrow turned into a forehead wrinke.  She ended up adding an eyebrow above each eye and writing "m" on my forehead wrinkle.  I'm impressed by her placement of everything and that her circles are controlled and match in size...and I'm going into far too much detail.

When Emma saw it, her mouth fell open in complete shock.  It was so funny!  So, Rhys drew another one on the other side of the chalkboard.  It looked very similar.

Anyway...it'll be fun to see if she ends up being a little artist or not.  (and, she is left handed, which is fun!!)

Okay, I should go to bed.  I've been doing so good at getting to bed on time this week.  But not tonight!

Saturday, April 6, 2013

For Emma's transplant

We found out that after Emma had her HLA typing redone, she went from having over 30 potential matches to only having 5.  I'm glad they didn't tell me or else I think I would have died from stress.  They've tested three of the five so far.  Two of them are 9/10 matches, and none of them are 10/10 matches thus far.  If neither of the other two end up being a 10/10, we're told from FA friends that 9/10 is almost like having 10/10.  We'll chat with the doctor about it if that's our best option just to understand if there are more risks associated and what they would be.  We'll be waiting to hear back about the other two and then will move along and transplant when we need to.

Speaking of transplant...

A friend nominated Emma for a "Little Hero" package at a place called Gamerosity that helps sick kids by sending them an iPad Mini and other fun stuff.  What they do is set up a page for the sick child, and then people can donate.  Once Gamerosity has enough money, they put together the package and send it to the sick kids.  They do this to try to help provide some enjoyment during the miserable, long hospital stays.

Emma was just added onto their "Heros" page, which allows people who want to help to be able to donate to the cause.  Since this afternoon, we've had just under $400 in donations (thank you, whoever you all are!).

If any of you were interested in donating (we'd appreciate it so much!), here's the link:
http://www.gamerosity.com/heroes/emma




Tuesday, April 2, 2013

dinner talk

The other night, TS (age 6) was saying prayer over our food, and the only thing he asked for was, "Please bless the food to taste good this time."

-----

Then last tonight, Tyler was about 4-5 hours late home from work. That never happens for so many hours without earlier notice, so the kids thought it was very strange. 

At dinner, we were talking about it, and TS said, "Maybe Dad died on his way home."

We knew that wasn't the case, since he texted and said he was still at the hospital (where he works).

I said, "What would we do if that did ever happen?" I was thinking I'd need to get a paid job and lots of things would change. I was curious what they thought.

TS said very seriously, "We would pray a lot..."

While Emma simultaneously said, "We'd put him in the garden."

I'm pretty sure birds stopped tweeting, and we heard a record scratch somewhere, and TS and I are like, "WHAT?! In the garden?!"

We don't even have a garden.

But at least now I know what they are planning to do if that ever happened. Guess we'll be getting a garden to plop his body in! Maybe we just plant pretty flowers around him?

I did find out later that Emma meant a cemetery. Due to her hearing impairments, sometimes her vocabulary gets a little mixed up.

Then there was another brief, slightly heated conversation between the two of them, where Emma said we'd put flowers on his grave, while TS gasped in disbelief that anyone would put something so girlie onto a guy's grave.

Anyway...

Moral of the story: Tyler don't work late. The kids get really weird...and don't be worried if you notice we're planting a garden.

Monday, April 1, 2013

Our Easter

We had a fabulous, well planned Easter this year!  That's code for "Oh, what?  Easter's here?"  We actually managed to get eggs a couple days in advance.  Usually I forget until the last minute because I'm in a time warp and time flies by without me noticing.

Enough of my jibber jabber.  Let's move along and show you the photos!

Here are the Easter baskets.  I mean "Easter" baskets, as not all of them are actually Easter baskets.  What's that you say?  Are those Halloween baskets?  Yes.  Why yes, they are.  That's what happens when you have babies faster than you can buy Easter baskets (especially if it takes you three years to buy a new Easter basket).  You resort to using your Halloween ones.


Since it had been storming outside, we chose to do our Easter Egg Hunt in the house.  We had the kids dress up nice...er...more like "Guys, don't walk around naked.  Make sure you have some type of clothing on because I'd really prefer to not have to use censor bars in the photos." (Totally a joke, as my kids don't usually walk around in their bday suit.)

I used to buy them cute little Easter outfits, but that didn't happen this year for several reasons.

The kids hung out in one of the bedrooms while Tyler hid all the eggs.  Then this (photo below) is right when they picked up their baskets off the floor there and were starting the hunt.  Ella really had no idea what she was doing.  Rhys took a second to figure it out and then was completely thrilled by it.


The kids took off all directions.  Emma stopped to help teach Ella how to put eggs in her basket.


She got the hang of it and liked it quite a lot!


Meanwhile, Rhys had gotten this thing down and was more than thrilled by it.  She was squealing and screaming over and over in excitement.  It was soooooo cute.


The babies were working as a team to pick the eggs up off the stairs.  We had a rule that all the eggs on the floor/stairs, the older kids needed to leave for the two little girls.  That way there were some left for them.

In case it's not already obvious...I didn't get the best pics!  They were all running around so fast, it was hard to catch anything that looked especially great.  But, who cares!  I still love the pics.  :)










Anyway, that was our Easter Egg Hunt.  I'm too tired to edit the photos and balance the lighting better, so pretend like I did.  I'm falling asleep, so time for bed.  Hope you all had a wonderful Easter, or whatever holiday you might celebrate this time of year!