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Tuesday, June 1, 2010

Hanging In There!!

Sorry that it has been a few days since I updated but I was at the hospital for the last 4 days straight and have a hard time doing them there. Needless to say, I am mentally exhausted from being there that long with no break but it was just the way the chips fell. Thankfully, my mom was able to come and fill in for me tonight and tomorrow so I am home getting a much needed breather. Thank goodness for friends (Debbie, Geraldine and Erica) who came and visited at various times over the 3 day holiday and brought with them friendship and, more importantly, FOOD!!! Erica was even kind enough to take a load of Ella's laundry home to wash and bring it back the next day as we were running out of clean things since I hadn't been home in a while. THANK YOU, THANK YOU, THANK YOU!!

Today was a hard day!! I think mostly because I was ready for a break. We had to move rooms because they needed ours in the Oncology ICU for a more fragile patient. We were actually moved out to the regular oncology unit. Thankfully we still have our own room but it is MUCH SMALLER!! This is where I start to feel as though I am whining. Believe me, more than anything, I am so thankful that we do not have to share a room because I can't imagine having to do so. For example, my little Angel likes to stay up until midnight as she seems to get her second wind then. When I finally say lights out and climb in bed myself, she cries until she finally gives up and falls asleep. Usually it is only for a few minutes but last night, it was for an hour. Finally at 1 am, I gave in and gave her another bottle and she was finally OUT!! How would you like to be roommates with a kid like that???? So again, I am very thankful for our own room, even though it is smaller. It is just that basically, we had been spoiled and didn't realize it. All we knew was our big room and you know how hard it is to downsize. As I packed up all of our things, I couldn't believe how much we have accumulated this past 3 1/2 weeks. I couldn't imagine where we would put everything in our new, smaller room. Ella did not take well to the transition. They wheeled her to her new room in her crib and she screamed the whole way. Then my mom arrived to relieve me as we were getting in to our new room and I think that Ella sensed that I was leaving. So here we are with a crying kid, piles of things in our new room and me quickly trying to find some sort of order before I have to head out to get home in time to pick the other kids up from school...not a fun day but at least I get to be home tonight in my own bed!!

The other reason that today was hard is that Ella's blood count went down again. Since my last post, Ella was at O and then the last few days her neutrophil counts (immune system) had been steadily going up. So much so that the Dr. told us not to do too much unpacking as we may get to go home in the next few days. Not 5 minutes later, he came in and said that today's blood count had come back and her counts were back to O!!! It is completely normal for them to do this but we were really hoping that we were on the upward climb. The good news is that she is making her own platelets and hemoglobin as those numbers are climbing on their own so we know that the bone marrow is working in the right direction. We just have to continue to be patient and play the numbers game.

Ella continues to appear to feel really good. She is starting to become really mischievious again. When she is in her crib and suppose to be falling asleep, she plays with all the important cords on the wall, knocks the phone off the shelf, tries to tamper with her IV pole...you name it, she gets her hands on it. She has been full of smiles for all the staff as they come in. We haven't left her room in over a week ever since her counts bottomed out but last night when the nurse was weighing her, she had the door open and Ella was sitting on the baby scale right inside the doorway. I think she was in heaven!! She was able to wave and talk to the people who walked by and loved it!! I felt bad because I know she wanted to go out but the little stinker won't keep a mask on for anything....so no go!!

Here are a few pictures from the past few days. As you can imagine there isn't a lot to take pictures of, but I try.

I gave Ella a haircut so that the shedding didn't seem so
extreme.....this was her first haircut EVER and the first
time I have ever cut any of my kids hair. Here is the
front view

And the back.....

Here is a before picture showing the length
of her hair before :(

My friend, Debbie is a Physical Therapist who works with
Special Education kiddos in the school district. She loves
to get her hands on Ella whenever possible. Ella didn't
think that she should have to work out during the holiday
weekend, but Debbie had other plans!!

I thnk she had fun though...don't you???

Cute little doggy that they bring around to visit the kids.
It took Ella a bit to want to touch her but eventually
really enjoyed it.

I knew that when we went home in between
rounds that I would have to take down Ella's
photo wall. In fact I had already decided that I woul
put it on poster board during our break so it would be
real easy to put up each time. Unfortunately, with our room
change, I had to take it down prematurely! But here it
is so far....(minus the few pics I received since I have been
at the hospital or a few that need to be printed off the computer). I can't
tell you what joy I get just looking at all these faces...they seriously
brighten my day...everyday!!

A few of our nurses have this cool button and I wanted to take
a picture of it so I can try to find one for myself...I think
it sums up my feelings perfectly!!!


stephanie said...

AWWW, sorry your not going to get to go home right now. And sorry about the down sizing. i do understand and your not whining , but even if you were , who the heck cares. You definitely have the right to!!!!

And we are the ones to whine to. Em's pic is coming! HAHA!! i guess I've said that before.

And who is the smallest dumpling all the way to the right with all that hair!!!! OMGoodness!!! What a cutie.

Nice to see Carly's pic up there too!

Love and hugs!

Kelly said...

Thanks for all the updates, Denise! Sorry that you won't be making it home right now, but Ella seems to be in good spirits, and that's half the battle!! Ella is really rockin' that short "do".....you did good, Mommy!! I hope you get some good rest and quality time with Abbey and Emma the next couple of days.

Landon is sending tons of hugs and kisses to his "sweet Ella". He misses babbling to her videos. Thinking of you all daily and continuing to pray that you will all be home soon!

BTW, your mom is the BEST:)

Jenny said...

What a little trooper Ella is! She looks great in the pictures :)
Thinking of you guys and hoping you can bust out of the hospital and go home soon!

my family said...

awesome button! she still is a cutie and that is great the hospital brings a dog around, how fun for the kiddos.

We have our picts for Ella just have to get them sent, we have had 2 deaths in John's family in the past week and a half so we have been running crazy here and not home much at all. Haven't forgotten about that sweet little one though and the girls pray for her each night before bed.

Rochelle said...

Sorry her counts went back to zero and you were trapped at the hospital for several days in a row. I am sure she is feeling the need to get out of that room too (especially a littler one). We will pray for her counts to get back going up so you can hightale it out of there.
You did a great job on her hair! She looks beautiful!!!
Hope you are out getting some much needed fresh air (don't worry about the laundry etc it will always be there, have some me time!)
Hugs dear friend,

Ruby's Mom said...

What a bummer that you had to move to a smaller room but it's great that you are able to still get to have a private room.Ruby always stays up until midnight too.I can understand that you would worry about keeping other's awake.

You did a super job on Ella's hair,she is such a little cutie,and she looks terrific!

I'm so glad that you have friends that can come by and cheer you up and how great is your Mom!
Praying ya'll get to go home soon!

Kelli said...

Wow, great job cutting Ella's hair! She is still so cute, even with shorter hair!

She is one little fighter...what a special girl.

Anonymous said...

Just wanted to leave you a note and tell you that I am thinking about you and am so glad for your updates.

We always feel like we have won the lottery when we get a single-bed room too. Thankfully, the new Hopkins children's hospital (our unit) will be ALL private rooms when it opens in a year or so...what a relief it is to not have to worry about other people's feelings when you are just doing everything you can to keep your own child happy and healing.

Have a great day!


Melissa M said...

I love Ella haircut. I think it is super cute!

The smaller room stinks. They did that to us when Claire was in with RSV. We were only in for 12 days total, and I was amazed how much stuff I had to move from room to room!

Hang in there!!

Lori said...

I think you are entitled to a little whining...I whine about far less and far more often.

Love the haircut! I don't dare touch my girls' hair with scissors...I can barely cut a straight line on paper, let alone a moving head =)

Many prayers are still coming your way. Praying for some rest and relief...and that Ella's numbers start to climb!

Emily said...

I am so sorry it has been a tough few days. I sure hope you were able to get some much needed rest. Her haircut looks as precious as could be! I loved looking at all of the pictures myself. What a special wall! Hugs and loves to you guys!

Becca said...

Wow, that button the nurses have is pretty powerful.

Sorry it's been a bumpy ride, but glad she's still feeling pretty good! Btw, her hair looks adorable - you did a great job!

Monica Crumley said...

Love that button. I love Ella's haircut. And her smiles are still there... may that never go away during her treatment time. I'm sorry, too, that you've had a rough few days. She remains in our prayers and by tomorrow, you'll probably have John Michael's little package in the mail to add to your growing Ella "fan" wall.

Mama Mason-Mann said...

Love the hair cut. Youd did a great job! I totally appreciate your missing your nice big room. When Chloe was little and in the hospital a lot she was real sick so she always got her own room (and we were lucky). We definitely had a favorite room (it was a corner once with HUGE windows and a nice layout. Hey, when you're there as much as you are you have a right to want it a certain way! You should get frequent flyer points!!!!! Glad to hear she's feeling well enough to be trouble, but sorry she's a handful when you're trapped in that small space! I can't imagine the confinement. We're all thinking of you as always.

Heidi said...

Wow - you really did have an awful day. I am praying for you and Ella every day. I will be praying that Ella will be able to go home soon. I'm sure she is more than ready to get out of that hospital!

The Lehnick Family said...

You are all on my mind everyday! I so wish I lived closer...You are such an amazing momma! And Miss Ella you are a treasure...so sorry you have to be there still, but I know she is a little trooper and hopefully you will all be home before you know it! Praying for you all the time!
Love her haircut! I'm sure she is such a pleasure to have as a patient...who wouldn't love that girl? Sending you big ((((hugs!)))) LOVE the picture wall! Brayden loves you Ella!

Thanks for the update...I have been so horrible about keeping up with my own blog. Hang in there Denise...

Love Darlena

Sweet Pea's Mommy said...

Enjoy your own bed and I love the haircut! She looks great!

Bulldogma said...

You did a great job on Ella's hair! I know it must be hard to see it thinning out but she is so beautiful she can get away with bald if she has to :)

My thoughts are still with you and Ella!

Michelle said...

oh my goodness I don't think anyone would have blamed you if you had a breakdown during that room transition- I know I would have! So glad you're able to get a break and sleep in your own bed. You did a great job on the hair cut -she is adorable! Praying for her counts to go back up soon!

Anne and Whitney: Up, Down and All Around said...

you did an AWESOME job on ella's hair cut!!! she looks adorable, as always! i love the physical therapy pics and the description of her mischievous ways!!! i hope this is the last time her white blood cells bottom out and that her neutrophils begin to climb and never look back!!! thinking about you tons and saying lots of prayers :)

Julie said...

Ella is as adorable as ever with her haircut! Good job mama! And I am still planning to send you some pics - if can get a minute to have them printed. Busy raising money ya know! Hugs to you and Ella Grace!

rhiannenlouise@yahoo.com.au said...

Hello! I just discovered your blog and have fallen head over heels in love with miss Ella!

I have added Ella's button to my own blog www.free2brhi.blogspot.com and Ella has just gained a prayer warrior from Australia!

Take that Leukemia!!!

Good job on the haircut by the way...It looks great!

You're beautiful little girl is in my prayers!