Saturday, January 26, 2013


Emma has had stomach issues (the runs) since she quit throwing up on Sunday.  She's also been very tired.  I wasn't sure if the illness was making her lethargic or if it was low counts.  So, I called the dr, and they thought she should come in for some blood work.

My Facebook Update:

When Emma found out it wasn't going to be a simple finger poke, she put up quite the fight. No crying, just curling up into a ball of steel (thanks, steroids), refusing to give us her arm, and letting us know she wasn't getting an arm poke. I briefly considered tackling the phlebotomist instead and letting Emma poke her in the arm to get her revenge! But I didn't. Emma finally complied. 

Life as a ninja is always an adventure.

Hemoglobin 8.6
Platelets 30
ANC 480

Not good numbers.

If you recall, an ANC under 500 is really low.  It means she has very little immune strength.  It's most likely due to her being sick that it's dropping low.  I would imagine if we can get her healthy again, overtime, it would increase again.

We feel like the androgens have helped her hemoglobin stay as strong as it is.  It's fluctuating from 9 to 8.6, but that's not a big change.  From pre-androgen experience, Emma's hemoglobin would normally have fallen low enough to need transfusions from illness like this.  So, it's nice to see that it's helping her that way.

Did I already say we are looking to change her to oxymetholone instead of danazol?  It's supposed to work better and some FA adults say it increased their immune system numbers too.  The danazol doesn't help Emma's immune system at all, so hopefully the oxymetholone would do something.

Emma's hospital/dr anxiety has gotten tremendously better lately.  She talks a little bit to the drs now instead of not at all.  She still glares at them and rolls her eyes when they talk to her (I wonder what they think - haha!), but she'll actually speak regularly at times now, which is new.  She told me today that she isn't scared like she used to be.  I'm so glad!

Oh, and it was funny.  We saw Dr W today, then Dr G2 walked by and said hi.  Then Dr L walked by and glared at her (being funny).  Then Dr G1 walked in and said hi to her for a few minutes.  He showed her pictures of his cat.  We might sometimes see one other dr walk by, so it was funny to see all four and for them to all make a point of making faces at her and saying hi.

Another funny is that, in the past month or two, three of the doctors have said something along the lines of, "Emma, I've been taking care of you since you were a baby!"  I corrected the first one who said that, but I haven't had the heart to correct the other two. never saw her as a baby.  She was three when we moved here.  It's just funny they all think they had her from the beginning.


Emotionally it's finally all hitting.  I was feeling some stress & grief through out everything as well, but now it's much stronger.  I feel like just crying and crying.  I don't even need a specific reason or thought or anything.  If I have a minute to myself, the tears are right there.

I'm having a hard time seeing her ANC so low so much.  I know it'll go back up (right?).  Why doesn't it work to simply will her counts back up to normal.  She's been pale and very tired.  Low hemoglobin affects everyone differently, and I've noticed once Emma's goes below 10, she has a hard time thinking as fast.  Then in the 9's, she is noticeably tired.  In the 8's, she becomes very stationary, only getting up when it's necessary.

I've stopped asking her to do very much work at all because I know it exhausts her.  When I see her walking around and then resting because she doesn't have energy to keep going, it makes me want to cry.  A child should be able to run and play.  She told me that she can't run very fast right now...and she can't.

I want there to be an option for a cure.

And, I also want to go to bed because I am suddenly about to fall asleep.

It always scares me when I publish an entry when I can't even remember what I just wrote...

Monday, January 21, 2013

More have fallen

When TS got sick, we weren't sure if it was food poisoning or an illness.  He got sick Tuesday, and by Friday, no one else was sick.  We were thinking it had to be food poisoning.  

Then Friday night arrived and Violet got sick.  She was sick all that night.  She didn't end up nearly as sick as TS, but she definitely was wiped out by it.  

Then Saturday night arrived and first Miss Ella got sick (a huge mess, too, since she'd just eaten a LOT of oatmeal).  We gave her a bath to get her cleaned up, but she threw up again before I was in a position to catch it.  So, we gave her another bath.  At this point, when we realized she was going to be hard to deal with while puking, we stripped her down to her diaper, covered the couch in towels and had lots of hand towels & wash clothes to catch further upchucks.  She would fight so much when she threw up, and it made it a challenge to keep it contained, though, we did pretty good.

A few hours into that, Rhys came out of her room crying.  Turns out she had thrown up all over her bed and stuffed animals.  So, we stripped her down and added her to our puke couch.

Here they are several hours into it, and many, many pukes later (around 5am):

They looked so cute together, despite being so sick.

If I could have chosen the order of pukes, I would have chosen to have Rhys be sick first instead of TS.  Then have Ella be sick next, instead of Violet, then have the other kids be sick together instead of the babies being sick together.  The reasoning is, it's hard to take care of two babies who have no ability to deal with it on their own!  The older ones can at least hold the bowl.

We had several times where Ella would start puking and then Rhys would follow just a couple seconds later. So, I'd catch one, and Tyler would catch the other.  It was one of those things where it was so ridiculous that it was funny.  Not funny that they felt so awful, just funny that we had synchronized puking.

The other challenge was that neither one gave much warning.  They couldn't holler our names or anything.  Rhys would pop her pacifier out and start crying, and we knew it was time.  Ella would just wake up and start.  So...that meant that I stayed awake all night to watch, otherwise it would have been a mess.  Tyler slept on the couch out near me so I could holler for him if we had puking in unison.

Then around 6am, Emma came out.  She was throwing up too.  So, I stuck her on the other couch.

I lost track of time, but somewhere in there, I got sick and Tyler did too.  It was nooooooo fun taking care of two sick babies while we were so sick too.  Luckily Emma could do a lot herself.

We were sick all day yesterday.  It's one of those days that you really wish you could fast forward.  Whenever I have the stomach flu, I'm always reminded of morning sickness.  While I've been grateful for the babies we've had, I absolutely hate morning sickness.  It's like having the stomach flu for 3-5 months (depending on baby).  I felt awful yesterday, but it still wasn't as bad as morning sickness.

Then there was the awful body aches, but a few baths helped with that.

Today we feel a lot better.  Rhys seems to still be feeling sick, but we're all slowly returning to normal.

I'm never leaving our house again.  I am so sick of being sick.  Time to boost their immune systems because I'm guessing they need it.

Thursday, January 17, 2013

the adventures of our night...

DAY 15:  Snuggling so cute on the couch

Not last night but the night before, I woke up to TS in our bathroom making lots of noise.  He was very upset.  I was very confused.  I had a couple flashes of memory of him crying next to my bed and then crying on my bed.  I think he must have been trying to tell me something, but he didn't try long enough to wake me up enough because I fell right back to sleep.

But there he was, in our bathroom, screaming and crying.  I had Ella sleeping in my arms, so I nudged Tyler and asked him if he could make sure TS was okay.  He went and came back and both were back to bed.  I had no idea what happened, but I fell back to sleep too.

I kept waking up to something that was different, something that my brain was telling me I should notice.  I was exhausted, though, and sleeping heavier than I think I usually do.  Finally I woke up enough to realize I was smelling something new.  It was sweet and very strong.  I finally asked Tyler if he could smell it too and what it was.

Tyler told me that TS had thrown up.  That made sense why he had been crying.  I woke up a lot more and wanted to check on him to make sure he was okay.  I laid Ella down on our middle pillow, trying to keep her asleep.  As we moved her, my hand got wet, then my elbow got wet.  I felt on her, and most of her backside was all wet.  Since I knew TS had puked, and I remembered he had been by our bed, I thought, oh my gosh, did he puke on the baby? And I searched around on the bed near where Ella had been, and found a large area of puke.  Yep, he had puked on the baby!

Then suddenly it hit me for some reason.  I burst out laughing and laughing.  I couldn't believe TS had thrown up on Ella.  I mean, who does that?!  Who walks over, from a completely different location, and pukes on their baby sister while she's sleeping?  haha...

I got up and changed my top because it had vomit on it.  Tyler and I were trying to figure out what all had happened and how to clean it all up while keeping everyone asleep.  We kept discovering puke in new places.

Turns out TS had thrown up on his pajamas prior to puking in the bathroom.  He had changed his pajamas, though, without waking us.  Then he must have come in, feeling like he was going to throw up, and threw up on our bed/Ella (haha), then went in and threw up in our bathroom and on his new pajamas.  We also found a trail of puke on our floor, but we're not sure if that was from it falling off the comforter when I pulled it off our bed or if that was from TS running to the bathroom.

It was all so confusing.  I felt like we were detectives, searching the clues to figure out exactly what happened.  Exactly how many times and places the boy had puked before he woke us up.  Turns out he had thrown up three times prior to waking us up.

We got the bedding off, except for the fitted sheet and bottom waterproof protector.  Miraculously Ella slept through it all, but of course, any other night, if I had to get up to pee, she would have woken up the moment the idea entered my mind.  But this night, she slept like a log (though, I've never seen any sleeping logs).  Tyler used our spot cleaner (like a super mini carpet cleaner) to clean up the vomit on the floor.

When he was done, I watched him while he quickly cleaned up the spot cleaner machine.  While doing so, he accidentally dumped the dirty water (aka puke) on the bathroom floor, including his feet and pj bottoms.  He screamed really loud in a surprisingly manly way.  I turned my head away and prayed for peace and self control, but I lost it, and I burst out laughing hysterically.  I could not believe he had just poured the puke all over himself.  We already had a ridiculous amount of puke to clean up, and then this happened.  Each time I looked at him, I laughed harder.  It got even funnier when he muttered, "Great, these are my last pair of pajama bottoms."  (Should I tell you why he doesn't have any other pajama bottoms?  It would be because of a special super power that I have.  I wore his pj bottoms when I was prego, and somehow I magically created big holes through out them all, except one.  He never wore them at the time...but clearly I need to buy him some new ones.)  I offered him mine because they were guy ones, and I had some girl ones I could put on.  He declined.

So, now he's standing there with no slippers or socks on, and NO PANTS.  I couldn't stop laughing.

It was one of those things where you witness how a person is changed due to parenthood.  Like at dinner that same night, Tyler had just gotten himself a napkin.  He folded it in half nicely, like he always does, and placed it by his plate.  Then about ten seconds later, Violet spilled her water right onto his napkin, totally soaking it.  Because it happened to Tyler, and because of his personality which is very organized, clean, particular about things, (wish I knew how to explain it better), it made me laugh so hard.  When those things happen to me, it seems more fitting/normal, I guess.  But when it happens to Tyler, it cracks me up because I know it makes his eye twitch.

This was a similar thing with the pants.

So, we finished cleaning up.  Tyler started off wearing pants and ended up wearing no pants.  But the puke was cleaned up.

Sleeping didn't go so well for me after that.  Every 15 minutes, like clockwork, TS was puking.

By mid-morning, he had thrown up 20 times.  I don't know why I kept count, but I did.

This was soon after he got up.

The day continued about like that, only his puking lessened to about every 45 minutes to 3 hours.  In total, he threw up 26 times, all together.

He slept a lot of yesterday.  Luckily he consumed water by the bottle full.  He kept very hydrated.  Since he wasn't eating anything else, we tried chicken broth and some drinks with electrolytes in it, as well as some juice.  He couldn't tolerate much of any of it, except we did get him to drink a think with the electrolytes.

Meanwhile, I noticed Violet was feeling a lot worse.  I'd noticed on Monday that her ear was hurting her.  I kept an eye on her to see if it continued hurting her or if she was making it up (not that she tries to lie, but sometimes it's hard to tell when things are real or not).  By the end of yesterday, her mood had changed significantly, I was convinced she was truly not feeling well.  Tyler took her to urgent care, and she does indeed have an ear infection.  I think it's the first time Violet has ever had antibiotics.

And...yesterday, Emma had blood work to check her blood counts.  I was too exhausted to drive to the dr's office due to lack of sleep.  There was no way I could bring all the kids like I had planned.  So, I asked my sister if there was anyway she could do it for me.  It's the first time we've needed to borrow her like this, and luckily, she was able to.  I have a hard time trusting others when it comes to Emma and medical things she goes through.  I feel like she needs the right kind of emotional connection and security from whoever is with her, and my sister is someone I totally trust with that.  So, while it was hard to not be with her, it was nice to know she was in good hands.

Counts are pretty good for her, especially compared to last time:

Her ANC is still higher than it's been in about three years.  I think the shot must have done something longer than they expected it to do.  I hope it stays up high.  They want to recheck in about a month.

I got Emma's biopsy results.  Cellularity is around 15%, but apparently it was a hard sample to determine it from because it was so spread out and empty.  Everything else looks good.  No cancer or chromosome changes, so yay!

And, lastly, here is TS this morning, after 26 pukes.  He was really nauseous right here, and he thought he was going to throw up again, but he didn't.  He has since improved more, and is actually awake and wants to play...maybe even eat.  I think I should go make him some chicken noodle soup.

I included the kitchen in the background to show how the kitchen is faring with such a sick boy.  (It is now almost clean, yay!)

DAY 17

One day I'll go back to color photos, but for the most part, I seem to really like black and white and want to learn how to do them I'm doing lots of them!

Sunday, January 13, 2013

catching up...Day 5 thru 11 of my 365 Project

I really like this one.  This was back when Violet was just starting to get sick and was needing to rest.  I really like black and whites lately...and the contrast of really dark to light.  


Day 6/365:  This was when the kids were in the middle of being sick, and I just didn't take many pics.  I only took seven pics this day...all looked about like this.  :)  It shows what Violets LOVES to do all the time.  Makeup!  She also likes it when I play with her hair (which clearly I hadn't in this photo).  She'd be happy if all she ever did was makeup, her hair, and dressing in beautiful princess dresses.  It's cute.


Ella likes to play in the main hallway.  At first she kept leaning against the wall here.  It was so funny watching her do it because she's never done it before, and you could tell how much fun she was having doing it.  She would standing there for a little while, walk away, then come back and lean again.  I had a hard time getting right where I wanted to be to get a good shot of her because our furniture was all right there.

DAY 7a

Then later on, she started laying down playing.  So cute!  I like how the hallway was so much darker (I did help it along afterwards, but it naturally had darkened to some extent).

DAY 7b

I love this one.  Ella fell asleep on his shoulders about an hour earlier than usual.  She was sick.  This was actually just a few hours before we left to the hospital for Emma (didn't know we were going to the hospital at this point).

Emma & TS looked so cute.  It was maybe an hour after the photo taken above.  TS was snuggling with her because she wasn't feeling well and was cold.  You can see she's not looking quite right here.  She gets a look in her eyes.  We didn't realize it yet, but her fever was starting, or had started, and she was starting to get a bit "foggy" brained and kind of out of it.  She went to bed with the kids right after this, about 2-3 hours earlier than usual.  We noticed her fever when kissing her forehead goodnight (to clarify, I wasn't kissing only her forehead goodnight.  I kissed her forehead to wish all of her goodnight...haha).  Violet is just as sweet with Emma.  I think Emma has some of the most special little siblings.  They really care a lot about each other...and yell and fight too.  haha.  I really like this photo.

I know I already posted this one earlier, but I didn't have many to choose from for this day.  She cracked me up with her crossed eyes...haha.  She looks so excited.


This is the view I had from her when I was hanging out in "my" spot (we all apparently had assigned spots).  I hadn't taken many pictures this day:


I've already posted this one, but it was my favorite from this day:


DAY TEN:  Taken right before she got dressed (and then I took the photo above after this one)

I need to get back into the swing of using my camera to take pics every day.  This one below is with my iPhone, and one of the only pics I took this day.  Emma and Violet really wanted makeup on.  They been watching makeup tutorials on youtube.  I need to watch them too to get them some fun makeup on.  hehe.  


Okay, now I'm mostly caught up...

Friday, January 11, 2013

amusing stuff

Alrighty, so this entry should have any miscellaneous memories and/or funny stuff that happened, that I don't want to forget, to help tie up my posting about Emma's hospital stay.

We arrived Monday night and went to the ER.  It's a big city hospital that we went to, and it was PACKED full of people & lots of sick children.  I was almost afraid to walk in for fear of her catching something.  Luckily when I checked in and told them that Emma was immune compromised & that the doctor told us to come, they immediately gave her a private room, a face mask, and a sign on the door that told the medical peeps to wear a mask and gloves:

Emma had testing done, and it was determined she was going to be admitted to the hospital, but it took them a while to get us our room.  While we waited, they ran a bag of IV antibiotics.  Ella ended up falling asleep, so I laid her down on the bed by Emma while she watched TV:

The room was quite small and cramped.  We had chairs to sit in, and we had silly shows on TV to watch.  Kyrie and I were both hungry, but we weren't really in a place at the hospital where we could walk around and look for a vending machine (don't want the germ exposure).  So, we mostly starved.

We waited...and waited...and waited...I think we arrived at 9-10 pm at the hospital.  We finally moved to a different room around 4-5am.  We waited for a long time!  It was a long time of being hungry!  Luckily Kyrie had a few snacks, but it wasn't quite enough to feed the masses...or just the two of us.

What did we do the whole time?  A couple times we called the nurse by accident.  Finally realized Emma was accidentally doing it.  Then, besides being goofy and saying really dumb, pointless things and laughing hysterically about everything, we also had an "ugly face" with my sister to see who can make the best ugly faces.  This was my sister's idea.  I got a message on FB from her, asking me if I wanted to text ugly faces back and forth.  So, from 1:30am to 3:30 am, that's what we did.  It made me laugh pretty hard the crazy faces she made.  Kyrie did it too with her, but I don't have those photos

Ani texted me this:

I responded with:

Back to her (LOVE this):

Now me:





How?!  How did she do that?  It cracked me up so much.











Just in case any of you had the misconception that I was you know.  It was a fun way to pass the time.  What are sisters for other than to act like a complete idiot with?  Thank you, Ani!  You helped pass the time in a very amusing way.  I LOVE YOU!

Finally we were transported to our room at about 4-5am.  By then I was pretty tired.  I was beginning to cross over into the dreams/reality mixing into one.  I couldn't guarantee that I was actually awake at all moments, including when the nurses were talking to me.

One of the things we noticed fairly quickly in the room was this sign.  It was hanging on the wall in a very visible place, as a good reminder for us all.  Take a moment and give it a good look over:

"Scrub the hug and let it dry!!"  

What?  It did not make any sense to us at all.  I figured I just needed to get some sleep, and I'd understand it better after that.  But before I could do that, we had to get checked in to this department.  Part of doing that was having to answer a LOT of questions about Emma to the nurse as she typed in my answers onto the computer.  

I won't go through all of it, but my state of mind was one of being halfway asleep.  She'd ask questions, and things just didn't make sense like they usually do.  I'd answer a question, and I'd totally forget what I had just said.  Absolutely no ability to recall it.  Kyrie offered to answer the questions for me.  She said she could make up some answers that would sound better than the ones I was giving...haha.

One of the questions the nurse asked was something about Emma's walking.  I told the nurse that Emma was getting out of breath while walking, was weaker, and that she felt weird.  I was trying to recall how Emma described it to me.  I said, "She told me that she felt...jiggly...when she walked."  I thought for a second, realizing that didn't sound right.  So, I tried correcting myself, "Not jiggly.  She felt wiggly when she walked."  No, still not right.  I could not for the life of me get my brain to work.  Then suddenly the word came, and I yelled "Wobbly!  She felt wobbly!"  The nurse smiled and Kyrie burst out laughing really hard.  

Then we were going on a little more.  They wanted to know if Emma had ever been around cigarette smoke, lead paint, black animals - I said, "Did you just say black animals?" while thinking, why does it matter what color the animal is?  She was really nice and didn't look at me like I was crazy.  She said, "No, just animals.  Is she around animals?"  I asked her if fish count.  They didn't.  Kyrie was laughing a lot.  I think it was at that point that I told Kyrie to go ahead and make up the answers for the rest of the questions because I wasn't doing any better than she would.

We went to bed.  Two hours later I was up again for the day.  I was pretty tired.  In hopes of preventing Kyrie from ending up overly exhausted and of no help, she went home for a few hours that day to get some sleep and then came back.  Ella was super sick that day.  She was also exhausted from not sleeping well the night before.  I almost took her to the ER because I was quite concerned about her.  This is what she looked like most of that day:

She had a really bad cough, a fever, and couldn't open her eyes all the way because they were drooping so much.  I think it's because she got half the sleep she needed the night before and was overtired and had a hard time napping as restfully as needed so she was perma-exhausted.  That was a really hard day, especially since I had only had two hours of sleep & trying to deal with such a needy baby and help Emma when she needed it.  I did manage to eat a full meal and take a short nap when Ella was taking a nap, and that helped a ton.  Oh, and our room was so hot.  I finally got them to cool it off by about 10 degrees.  Life got a lot easier after that.  :)  I had been feeling a bit overwhelmed until that point.

Kyrie, am I missing anything?  We never did really figure out what "Scrub the hub and let it dry!!" meant exactly.  We stood and pondered it several times.  We assume it has to do with germs, but...a hub?  We want to make our own, awesome, random, pointless sign too.

Oh, I just remembered another thing.  When Emma's IV bag would empty, the IV machine would start beeping...and beeping...and beeping.  Kyrie had discovered the "silent" button on it.  So, when it would go off, she would take her laptop, turn on some type of theme background music, jump up, hit the silence button (while being really dramatic) then come sit back down and turn off her music and continue about her normal activity.  It was much funnier in person than I probably made it sound.  She's a whole 16 years old now, and she's completely insane.

Here's a few more "ugly faces" texts that I had with a couple of my sisters:


ME:  I was trying really hard to make my neck look weird.



Ani being Capt Hook:


Then one of my older sisters texted me to check in and soon we were doing this:





This probably isn't very funny to other people, but sitting there trying to make a horrible/funny face was the cause of much laughter.  Especially with Kyrie right there, who could watch me trying to pose and take a picture of myself.  She had her own series of ugly face texts that she did, and I'd hear her burst out laughing as she was trying to make a horrible ugly face.  It might not sound like it, but it's really fun & funny.  If you're in a stressful situation, just text your sister/brother an ugly face and see if they can beat it.  

This is Ella the day after her really bad day.  She was having fun climbing all over me:

Anyway, I must say that at times like these, you realize how important other people are.  I couldn't respond to most of the people that reached out to us, due to lack of time, but feeling their care and concern and their desires to help was very heart warming, encouraging, and strengthening.  So, just know if you ever wonder if you should reach out to someone going through a bit of a hard time - do it.  If they don't respond, odds are they are too busy to do so, but I know they appreciate it greatly.  I just want to make sure to thank all of you who took time to send us a note and encourage us.

And, Kyrie!  Thank you for coming.  Having your help was a breath of fresh air in an otherwise stressful time.  Thanks for being so goofy and being so fun to laugh and be stupid with.  Emma and Ella loved it too.  

Okay, so now I think I've got the whole experience written out...

Thanks again, everyone!