Tuesday, July 14, 2009

She's Coming Back

Ally seems to be bouncing back from everything pretty well. She seems happier, laughs a little more, and I even noticed her doing a few things for herself that she would normally ask me to do. All this and I knew that her blood counts are going down, which should be making her feel worse. I took her temp several times today, no fever. I keep praying that the fever stays away and this bacterial infection just gets resolved with the antibiotics.

Speaking of antibiotics, I found out today that I am going to earn yet another notch in my nurse's training belt. Ally has to do 8 more days of IV antibiotics and I have to be the one to infuse them! The home health nurses came out today to teach us how to do it. They are coming tomorrow to take some more blood cultures, and they will watch me do it then, but after that I am on my own. So that's a little scary. I have to flush the line with saline, then infuse the antibiotic over 30 minutes, flush the line again, and then infuse her with heparin. I am going to try to do it at 3 o'clock every day. But I also have to remember to take the antibiotic out of the refrigerator at 9 am as it needs 6 hours to warm up. I just know that I am going to forget someday. So if you are talking to me some morning, please remind me. (Nicki...Melissa, this is a good job for you)

I feel better today. My feelings go right in line with how my daughter is feeling. Sometimes I wonder if I am doing too much for her. She is seven years old, and not a baby, but I am still pouring her juice, getting her stuff, etc. I sometimes think I am making a mistake by catering to her every need. (blanket, water, craft supplies, scissors, close the blinds, get the remote, kleenex, the requests go on all day long). But then again, the poor girl is sitting here with leukemia and feels pretty run down from all of the chemo. I have heard of people ruining their kids independence when they go through trials like this. And I have also read that she should be pouring her own darn cup of juice. The more they do, the better they are. As is everything I do these days, I walk a fine line. I just gotta figure it out.

The highlight of my day came this morning. The two younger kids were over at their cousin's house and everything was quiet. Ally and Madison were in sitting on the couch, and I was in my office doing some work (I am a very part time CPA..from home) They could not see me, but I could hear them. They were doing this little craft project (bendaroos) and just chatting. The song, "The Climb" came on the radio and all of sudden they were both singing it. It is a Miley Cyrus/Hannah Montana song, which I would normally run from as fast as I could. But I listened to them singing the words in their sweet little voices and it just touched my heart. Then I really listened to the words.....they fit our situation exactly. I started looking them up online. It's a good song for her and a good motto for our Army. These are the words...think of Ally the next time you hear it!

I can almost see it
That dream I'm dreaming but
There's a voice inside my head sayin,
You'll never reach it,
Every step I'm taking,
Every move I make feels
Lost with no direction
My faith is shaking but I
Got to keep trying
Got to keep my head held high

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm gonna have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing,
The chances I'm taking
Sometimes might knock me down but
No I'm not breaking
I may not know it
But these are the moments that
I'm going to remember most yeah
Just got to keep going
And I,
I got to be strong
Just keep pushing on, cause

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm gonna have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

Keep on moving
Keep climbing
Keep the faith baby
It's all about
It's all about
The climb
Keep the faith
Keep your faith

15 comments:

  1. Janel, What a great song and we'll definitely think of Ally when we hear it. I have no doubts of your ability to do the infusions...you'll do great! Love you all, Anne

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  2. Wow, what a powerful parallel. Keep the faith and know that Ally's Army is behind all of you. Try not to drive yourself crazy with her independence. There will be plenty of time for that after she beats this nasty stuff. We love you all and you are in our thoughts and prayers.
    The Suchomels

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  3. What a strong fighter you have! Wonderful to hear Ally is bouncing back from this infection so quickly, just shows how strong her body is!
    Janel, you are doing everything right, the day will come soon enough when she wants to do it all herself!
    Keeping your family in our prayers,
    Laura

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  4. So glad to hear you are all still climbing.

    Always praying,
    Amanda

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  5. Who knew I could be touched by a Hanna Montana song? I learn so much on your blog...
    Janel, I am one of those people who feels that we put a little too much emphasis on children developing independence in our modern western society...there's plenty of time for that, and I don't think you are spoiling her in the least to let her see that even when she's really needy, her needs will be met. She will turn around and do the same for someone else one day because of your example. But if YOU need a break from it, well, that is something different--because you also have to meet your own needs. No guilt either way, you know?

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  6. Ok. I couldn't just read the song. I had to sing it in my head! :) How appropriate for both of you, for your family.
    I remember when Abby was a baby, my mom told me to quit reading all those "baby help" books. "Just do what feels right--follow your instincts". Nothing wrong with waiting on and babying your sick child. She is only 7 and going through some scary stuff.
    Keep the faith, Janel, and when you get to the other side...make Ally get you a glass of juice (or a gin & tonic, whatever works for you :) )
    Paula

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  7. So glad to hear that Ally is bouncing back - you are doing a great job - you don't need to second guess yourself so much - if you think she can get her own juice, close the blinds, get her own blanket - tell her to go ahead and get it. You are still her mother...not her slave. It sounds like you have the right balance, but maybe more independence during the days she feels good and less independence when she is hurting is the key???

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  8. I am so happy to hear that Ally is doing better. It makes me happy to think of her laughing, and especially happy to think of her singing! I'm slightly embarrassed to say that I have caught myself singing that song many times even when Bella is not with me! I really do love that particular Hannah Montana song, and it is a perfect mantra for Ally and her army.

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  9. I cannot tell you how many times I have heard that song in the car (my kids are radio Disney fanatics) and have thought of Ally! It is perfect for her! Also, Sam is 8 and I still pour his juice, make his bed, make his PB and J, you name it. I think kids become independent from feeling confident, and that comes from feeling secure and taken care of enough to make other 'jumps'. So, in my opinion, don't sweat it, besides, since your house is like mine, I beat you're pouring for the littler ones at the same time anyway!
    Glad she's feeling better today! Love!

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  10. The song is a powerful one. I heard it for the first time a few months ago and really gravitated to it. I think it fits this situation well.
    As far as independence, I believe all kids need to do basic things for themselves, no matter what their situation. We have taught Matthew that even though he has a chronic illness, he still can do a lot for himself and he is in charge of his body and medicines (to a degree). He then has the power and the control, which I think is key. Just my view on the subject.
    Stay strong.

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  11. Wow you have to give Ally her IV medicines this week? Well I know you can do it. After a few times it will be like nothing. But yeah remembering to set it out would be hard here too, I'll try to help remind ya. :)
    When Lisa and I stopped by last night, we both remarked how good Ally looked and that she was OUT and she came up to the car and everything.
    You just do what you want to do and what you think is best for Ally. There really is no wrong way to raise a child. What's good for the goose is not always good for the gander. Everyone raises their kids differently, but as long as we have happy, healthy kids in the end then we have done our job.
    I, obviously in a house of boys, do not know that song but will have to check it out. Lyrics alone look good to me!

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  12. I'm not a big fan of Miley Cyrus, but I do like the lyrics to that song and I know every word. :)

    I had to catch up on your blog today from last week. I'm sorry you had to go back to the hospital. I wish I would have known.

    Hang in there.

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  13. I will comment today because I am so touched by Ally's singing and the good news. We don't know each other, but we so feel your agony and Ally's pain. What wonderful supporters you have! The common thread is what a great job you are doing in this challenging situation and, I agree, don't burden yourself with second guessing or concerns about independence. You are giving Ally love and support in a very difficult time of her young life. Your faith supports being a caring, loving, giving parent - that is who and what you are! My husband, Reid, met your Dad briefly in Longboat Key and thus our connection to you and all your family has endured. We send our love, prayers and support. Susan Murphy

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  14. i am now a Hannah Montana fan. yes, that makes it public, right? i've actually never heard that song, but am going to look it up on itunes right now. perfect lyrics.

    just wanted you to know that while scary, I'm sure the drug infusion will go well. you won't screw it up. my mom used to have to give my dad "stuff" through his port, and i think it was actually comforting for me to see her do that. it meant we all could do it; not just strangers. and i'm sure you'll figure out the balance of how much to do when. i have a feeling Ally's independence won't be shaken by this....take care of yourself.

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  15. Love this song...love the fact that her Uncle Brad mentioned it a while back :-)
    Do not fear administering the meds., this is nothing compared to some things you have seen/done.

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