Sunday, June 30, 2013

Lucky Charms

Update on yesterday and today...

Pretty much lately we do nothing but be really dumb and waste our time eating and getting fat.  I'm pretty sure one of the goals of the RMH is to feed you so much that you gain at least 90 lbs before you go back home.  They have yummy food everywhere.  It's awesome and horrible, all in one.

Yesterday I found they had this...
 I haven't had Lucky Charms in FOREVER!!  When I say forever, I mean it's very easily been a decade.

Then we FaceTimed with Daddy and Rhys.  Ella came over and took over the iPad.  She chatted away with them.  Rhys was a little bit sad.

So, Ella kissed her...

And hugged her:


Then I went out on one of the terraces and let Ella run around while I FaceTimed with Violet:

Meanwhile, Ella decided to lay down flat on the ground.  This was taken right as she moved to roll over, but she was flat on her back on the ground for a minute.  For no reason other than she is a weirdo.

Then she laid on her side for a few minutes...exactly like this...arms and legs just like that:


Then today we decided to bleach Emma's roots and recolor her hair again.  Her roots were growing out quite a lot.  If you've never met my sister Ani, she's pretty much just a lunatic.  Whenever we do stuff today, it's usually full of lots of insane laughing.

(I realize it looks like of like we are slobs, but we really aren't.  Some are cleaner than others, and I find that even when I clean regularly, in the blink of an eye, it's a mess. But we still clean - it seems like a couple times a day.  It is a fairly small area to have five people...one being a baby who likes to pull everything down and empty things all over the floor.)

First we bleached her roots.  Then we rinsed, washed, conditioned, and dried her hair.  Then we divided it and recolored all her hair again.  It looks much better, but I never did get a very good photo of it.  I'm sure I'll get a better one tomorrow.  This photo is with the bleach on and she was waiting for it to do it's thing.

While we did Emma's hair, Ella hung out with Kyrie doing various things.  One was to eat some food in her high chair.

Her hair now has three main colors.  Pink in the front that fades into a purple pink color.  Then dark purple and teal.  I realize that sounds like four colors, but we only applied three colors.  Whatever else it did magically we aren't responsible for.  It looks WAY better in real life.

Ani did her hair in pig tails and curled it, but by the time I thought to take a photo, she was laying down and didn't want to sit up.  Oh well.  It looked super cute.  We also did a little makeup for fun (we figure she has lots of days upcoming that won't be so fun...so we're good with doing fun stuff now).

She kept reminding us of an anime character.  Many of Emma's features are Asian.  There's a medical term for it, but I can't remember what it's called, but in parenthesis, it said "Asian features".  FA has two main looks and that's the one she seems to lean more towards.  We think it's pretty cool because we all wish we were Asian...  These photos don't show it very well, but she looked super de duper cute.

And, here she is showing her eye control and purposefully crossing only one eye:

Tomorrow we have to get up way too early and head to the hospital for lots of platelets and possibly some blood.  This is to get Emma's blood ready to handle surgery for the next day, Tuesday.  The surgery is to place her central line and to remove an ovary.

So, I should probably go to bed.

Good night!

Saturday, June 29, 2013

the ZOO

It would appear my previous post didn't show all the videos.  They are on our FB page if you wanted to watch them.  I'll remember to include links more.

About a week ago we went to the zoo.  We have been cautious being around people, but if you're out in a lot of open air, and you are able to avoid crowds, it's quite safe.  We checked with our hem/onc, and they said it was fine to go to the zoo, if we avoid crowds and avoid indoors.

The zoo was right down the street from us.  We also got free tickets from the RMH.  We parked in their overflow parking lot and then didn't know where to go from there.  We had no idea where the actual zoo was (because we're cool like that).  We stood at the entrance of the parking lot for a minute, waiting to see where other people went.  T.

We've been told how dangerous the city is around the RMH, but no one killed us.  So, that's always a plus.

We were able to go right in, avoiding the LONG line.  And, of course, the day we chose to go to the zoo, it also happened to be an educational day with lots of school kids (or groups of kids from somewhere...isn't school out?).


We saw the elephants first...


Then we walked by their little gift store thingy and decided we wanted hats.  We're quite fair skinned and didn't want to burn.  Emma needs to avoid the sun too...

Obviously that meant we needed to buy the girls some stuffed animals too.


Emma was in stuffed animal heaven (notice how we were told to avoid indoors and we are indoors.  It was quite a big open building and we avoided people).

And these were the final choices for our hats...we quite liked them:

We were in the bamboo forest here, though, it doesn't look as awesome in the photo as it really was.


I like how Emma is showing off her tiger and Ella has no hat on anymore.  She would only wear it for short periods of time.


Kyrie was looking gorgeous in her little hat too.  :)


She was reading something out of it.  (Here we were waiting for the train.)


And, some pics...




I like Kyrie's expression in this one:

I also like how Emma is almost hidden in the sea of big hats...

Kyrie and I had fun doing the, "Yeah, people here keep saying how hot it gets."  We snicker.  "Hot?!  This is cool!  We're from Texas!"  As we pull out our little fan and spray bottle to cool ourselves and rest in the shade because it's too hot.

Sure, it's hotter in Texas.  It's also quite humid in Texas.  But, we don't like it when it's this "cool" in Texas either.  So, just because it gets way hotter in Texas doesn't mean we like it when it's super humid and 90 degrees in Cincinnati.  You know?  But we felt the need to pretend like we thought it was almost cold outside.

Here's Kyrie on our way back out to the car.  After the train ride, it seemed to suddenly be super busy.  We both suddenly felt a little freaked out at our inability to avoid the crowds.  Emma got tired, so I carried Ella and Kyrie pushed Emma.

Kyrie got to see her favorite red pandas.  Heard of them?  If not, you can learn about them here:
http://animals.nationalgeographic.com/animals/mammals/red-panda/

Then we walked back to the parking lot.  We may have struggled slightly to get back out of the zoo, but it was nothing that a little walking couldn't fix.  It was entertaining when some people kind of started following us, and it was obvious they didn't know where they were going either.

No one killed us on our way back out to the parking lot either.  So, we thought that was cool.

-----

Now back to current time.  This photo was taken a couple days ago with my nice camera.  I finally have an easy way to get my photos downloaded from it, so I'll probably use it more often again.


Right now, we're just kind of hanging out and waiting.  On Monday she gets lots of blood/platelets, then central line on Tuesday, along with an ovary removal.  She'll be admitted for a couple days.  Then we'll be back out, I'm guessing.  I can't imagine they'd keep her in there the whole time!

I'll try to write a more recent update with our current goings on soon.

Friday, June 28, 2013

this past week

(from a week ago-ish)

I finally have acomputer to use.  It's been driving me a little nutty!  I'm hoping this will make it easier to update the blog regularly, as well as respond more individually on FB.  FB is a lot easier to update.  If you aren't already following over on our FB page, here's the link:

www.facebook.com/ourlittletasteofheaven

This past week wasn't too busy.  We had Emma's rbc transfusion on Tuesday.  Then we had Wednesday off, but I seriously can't remember that day.  I don't think I could the day after...haha!  Ella keeps waking up really early, making it hard to get enough sleep (especially because I don't always go to bed super early!).

Thursday we had a few meetings...one was consent forms for studies, another was financial, and the last was to meet our social worker.  There were some consent forms.  Two required Emma's signature, which she thought was funny.



After we did that, the financial lady came in to go over our insurance and how that all works.  They thought it would be boring for Emma, so they decided to get her a craft or something.  Instead, they came back with a clown (Paul).  He was really funny:


He would go around, entertaining the kids.  He had Emma for about 45 minutes, maybe more.  He started off with her with us and was teaching her how to hold a spinning plate on her finger.  Then he gave her a peacock feather and was teaching her how to hold it on the palm of her hand.  Then he was juggling with with her later on.  He was really chatty and loud and funny and entertaining.  I thought Emma would be too shy, but she wasn't at all!  Once she started doing it and doing really good with it, she didn't want to stop.

He had her out in the waiting room and had her perform for the people in there.  She loved it.  It was so cute.  I don't know if these videos work for those of you not on Facebook, but they block YouTube here at the RMH, so I can't upload them there for you to see.

Here she is first learning:
https://www.facebook.com/photo.php?v=215329311947986





Used my phone's cellular network to upload to YouTube, but I can't watch these to see if they'll work!  Let me know if they don't.  :)




In the waiting area:
https://www.facebook.com/photo.php?v=215330921947825





I watched, as well as did my meetings.  A little mix of both.

By the end of it, Emma was in love.  She wants to be a circus performer, I think!

She didn't want to leave him and wanted to do this stuff all day.  When we walked up to the tranpslant unit to check it out, Emma performed her peacock feather trick in front of everyone waiting for the elevator (Paul was no longer there, she just wanted to).  People thought it was fun.

We toured the transplant floor, but the only thing she seemed to notice was that I was holding her peacock feather, and she wanted it back.  (I had warned her to keep hold of it in the tranpslant unit, but she wouldn't, so I told her i'd give it right back as soon as we were out).  It was a bit weird/surreal to see the transplant floor and to know that very soon that floor will be come very familiar.

We went back downstairs and Emma performed whenever she could.  We ran back over to the RMH and she performed several times for people.  Some people stopped and watched and commented on how awesome it was.  Then others didn't seem too interested.  I loved it when people took the time to pay attention.

We sat down for lunch and was talking so much about it and couldn't stop.  Paul had invited us to a circus camp that he was doing the next day.  He said that there would be a lot of kids there.  Obviously Emma can't go to that right now, but I wanted her to get to do that!

We were eating lunch and talking about it, and I told her we weren't going to be able to go to it right now but maybe when she's done with transplant, we could look up those circus guys that he mentioned lived near our home, and we could see about some activities with them.

She seemed disappointed but okay with it.  Then a little while later, I looked at her, and she was trying so hard not to cry.  When I asked her about it, she couldn't hold it in and was crying pretty hard over it.  I held her for a while and she cried for a while.


Watching her cry over it, I was about to burst.  My heart broke for her.

We've since contacted Paul, and we've learned quite a bit more about medical clowns and what they do.  I find it rather fascinating and really amazing...especially after seeing how Emma responded to them.

We ended up going back to the hospital a different day and she played with them some more.  They gave her a stick and bowl to spin.  We've had fun with it too.  :)


Ani taking a turn with the spinning plate:

---
If you've never heard of medical clowning, it's really quite interesting.  Here are some videos that explain it really well.  These are links Paul sent that we thought were neat:

(sorry, I can't get access to YouTube at the RMH...so here's the link):
http://youtu.be/9zGAJiOek1E

Then another one:

Circus Mojo's Circus Wellness (™) PechaKucha from Paul Miller on Vimeo.


Pretty neat people do that for kids.  Here's their FB page:
https://www.facebook.com/circusmojo

Wednesday, June 19, 2013

mailing addresses & donation info

Since we've left for transplant, we've received a lot of messages asking for our mailing address, plus several have wanted to know how they can donate financially to help with the cost of Emma's transplant.  I thought I'd answer both questions here:


MAILING ADDRESSES:
If you want to send mail to Emma, Ella, Kyrie (my niece), Ani (my sister), or me, here's the address:

RMH of Cincinnati
Attn: <Insert name> Room #62
350 Erkenbrecher Ave
Cincinnati, OH  45229

**As of this moment, there are no restrictions for what type of things Emma can have.  Once she starts her transplant, there are restrictions, but I don't know what they are!  I'll have to find that out - or maybe post transplant parents reading this can leave a comment explaining what those are?**

-----

If you want to send mail to Tyler, Tyler Jr, Violet, or Rhys, here's the address:

Tyler & Kids
PO Box 1156
Anna, TX 75409

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FINANCIAL DONATIONS:

It feels very strange to be in a position to need these.  By default we feel like saying, "Oh don't worry about it!", but truthfully, this costs a lot having our family split in two.  So, despite it feeling very strange to us, we gladly accept any financial donations.  Any way you want to donate is fine by us. 

We have PayPal:  teresabelle@gmail.com

Or checks written to "Tyler or Teresa Clifton" and mailed to either address above will work as well.

THANK YOU!

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Also, for those who are local, our friends have all come together to put together a big garage sale/bake sale fundraiser.  They have put flyers up around town, put it in the newspaper, and have even put it on the radio.  If you're local and want to go, here is the info:


Can you read that?  The image looks really small, but I'm not sure how to make it bigger on this app I'm using to write on my blog!

----

Thank you everyone for everything.  :)

Love,
Us

Tuesday, June 18, 2013

tuesday

Okay, I've been trying to work on catching up the blog with all the days I've missed, but I'm not succeeding.  Instead I'm just getting more and more behind.  So, instead, I'm just going to start from today.  I'll work on past days as I have time (sorry if that's confusing).  I have been keeping FaceBook updated pretty well.  It's just super quick and easy compared to blogging.  I think I'm going to copy/paste the FB posts onto here for missed past days since I know some of you are never on FB.

So...we left June 6th for Cincinnati, OH for a bone marrow transplant for Emma, which I think most of you know.  Appts started June 10th, and we've done a lot of testing.  I'll try to update on that soon so that it's not too confusing chronologically.  

Today we had a play date with the BMT psychologist.  She wanted to get to know Emma a little and become a familiar face for her.  We played a little Go Fish and Princess Uno.  Emma enjoyed it quite a bit.  The psychologist's last name is Roddenberry...so obviously she's pretty awesome.


When we arrived at the hospital, Emma told me that she needed more blood.  She said she was too tired and didn't have energy.  So, when we arrived at the hospital for the playdate, I told them what Emma said.  So, they made a few calls while we were playing and ended up getting hematology to do a finger poke and check her blood.  Her blood results came back right after the playdate ended:


As you can see, her hgb is 7.6.  Her platelets down to 14.

It doesn't show it, but on another test result, it showed that her ANC was 360.  It just keeps on dropping!  ANC is how strong your immune system is.  Hers is SUPER wimpy.

Her hgb isn't tooooooo awful, as awful goes, but her platelets and hemoglobin are horrible.  

After our playdate, we went over to the ped hem/onc clinic and they did an IV, then blood typing/matching.  That took about an hour for them to get the results of that.  Then the blood came.  Even though Emma told me she needed blood and she needed blood work done, she was still quite defiant when it came to getting the blood.  They had child life come and help her work through the process.  They are pretty awesome.  She responded really well to it.

Before they started the blood, I ran to the RMH to get Emma her iPad and to grab some food.  In the parking garage, I met up with my new found friend.  I think his name is Roger.  He's the parking dude down there.  I met him the first day I arrived at the hospital and was super confused.  He was directing traffic, and I asked him where the D elevators were.  He pointed the way.  Then when we were leaving the hospital, he happened to walk by and ask us if we needed help, and we needed help finding the D elevators to leave.  (now it seems rather easy!)  Then we saw him almost every day after that.  Now when we see each other we wave and hug and he's become my adopted dad, I think.  I'm not sure what he thinks about that, but seriously, it's super bizarre how you meet some of these people and develop a bond for absolutely no reason.  But when I was leaving today to get Emma her iPad, I saw him again in the parking garage (after a few days of not).  He gave me a hug and asked me where I'd been!  Then I showed him a photo of my family and his face fell off when he saw I had five kids.  It was hilarious.  (I find it rather amusing when I tell people I have five kids.  Usually they think my baby is my first and only.)  He asked me how I was old enough and then looked me up and down wondering how I'd had so many.  It was so funny.  Then I told him to smile because I was going to take a photo of him and post it online.  He is an ex-marine and ex-firefighter.  We'll probably be having lunch one of these days.  


When I came back, they had just given Emma some Tylenol.  We were trying to do it this time with no Benadryl  (since she reacts to that).  Then we got the blood and they hooked it up.

She's pretty sick of not having enough blood.  I thought this photo captured her view on it pretty well!

Emma seems to feel lower back pain each time she gets a transfusion.  It makes it difficult for her to sit.  I don't understand it or why she feels the way she does. She'll still sit a lot, but she has times where she seems to have to stand.

Transfusions can feel like ENDLESS waiting.



She has bits where she'll start whimpering and crying a little.  It doesn't seem like it's related just to the long waiting...more like she feel ancy or uncomfortable somehow from it.  Luckily we do have a TV in the room and she does have her iPad.  My iPad and iPhone were both on the brink of death.  So, I was limited in what I could do.

I was trying to help her feel a little bit better, so we had a little photoshoot.  (I posted this on FB and then when I was saving it to my iPad to post here, I accidentally deleted it off FB - not annoying at all!)


An EMPTY BAG!!!  It still seemed to take 30 minutes for the remaining blood to run through (not sure it really took that long, but it seemed like it was never ending).

So...our play date was at 10am over by 11am.  Soon after came the blood results that showed she needed a transfusion.  Then it was around 1-2 that we got the IV and blood started, and by 6pm we were finally leaving.

Here she is in the elevator on our way to the parking garage.  She wouldn't stop applying pressure to the IV site because she was worried she wouldn't stop bleeding.  She did that once where she bled and made a pretty big mess.  She's been very careful since then.  And, with her platelets down to 14, who can blame her?!!  They won't transfuse platelets until lower than 10 or unless she is bleeding.

Because her immune system is so low, she always wears a mask now when we are in any public place.  

A few more pictures....these are from yesterday.




And, since we've left, TS, my 6 yr old boy, he won't talk to me on FaceTime very much.  He hasn't outright been rude or anything, but he is definitely coping by avoiding the situation.  Yesterday I finally pinned him down and talked to him.  At first he kept dropping the iPad and made it very clear he wasn't interested.  But once Ty finally got him on and I talked to him, he was in tears within just a few minutes, asking me to come back home.  He didn't want me to be gone anymore and he wanted me home again.  He cried quite a bit.  

It broke my heart, but it also felt so good to get to talk to him.  We talked about why I was gone and how much I missed him too.  I told him how much I miss wiping my clean, wet hands on his face.  He thought that was funny.  We spent a lot of time just goofing off over FaceTime, but there were 2-3 times that he would start crying and asking me to come back.  (not the best photo, but it's the only one I took).



Violet talks to me the most.  She will call me and tell me that she misses me and wants me home.  She'll cry regularly about it too.  When she goes to sleep some nights (all nights?) she'll hug the rabbit I gave her.  She'll hug it over and over to hear my recording on it.  But a lot of the time our talks are just fun talks about nothing really...just enjoying being "together".



Then Rhys, when I talk to her, often she is a little angry seeming at first.  She won't talk to me.  Then when she does, she will ask me why I went bye bye.  She wants me back home.  But if I can get her to talk to me, she'll warm up after a while.  It feels so good to see her.  I miss her perma-wedgy.  She always has one since she potty trained.  hehe.  

Sometimes she'll go in my room (like after a nap) and will sit on the floor crying, calling for me.  She struggles a bit having momma gone.



I HATE THIS PART OF IT ALL.

The separation is so hard.  They are so little, and I don't think mommy is replaceable.  I hate that this hurts them at all.  I would really like to have Rhys for sure come up and stay once Emma is no longer in-patient and no longer at the day hospital several times a week.  I'd love for Violet and Tyler to come up too.  But I"m not sure how that will all work.  We'll have to see.  I just don't think we can stand such a long separation, and if we don't have to be separated, I don't want to be.  

I know in the long run they'll survive it, and so will I.  I just don't like the time apart AT ALL.

What I'm saying is...this part more than sucks.  It's awful.  I hate it.  There's such a heartache being so far away from them.  And not just them.  I miss Tyler so much too.




We send videos to each other too, or just photos randomly.  Violet and the girl cousins are pretty good at doing the videos/photos.  It's fun.  Here are a couple I"ve sent to them:



While I might sound all gloomy about it, our FaceTime chats are mostly funny and trying to be positive.  

I'm trying to treasure this time at the same time, though.  This is a very unique experience to go through a bone marrow transplant and live at the Ronald McDonald House.  I hope to never go through it again...but want to appreciate the specialness of it while we are going through it.  

Okay, time for bed.  I'll try to work on a loooooong post (or several, not sure) to update on the past days.