Saturday, April 21, 2007

Better day - Sat 4/21

Dear Friends,

Thank you for your posts, note of encouragment and prayers!!!  I wish I could respond to each one of you to let you know how very much your words and prayers mean to me!  Better yet, I'd love to give you a hug!  I feel so very blessed to be a part of the body of Christ - in a way that I have never experienced in my life.  This is a sweet balm to my soul.  I thank God for each one of you - those that post, those that pray, those that have taken an interest in my precious daughter and our family.  Your words of support in having her in our home instead of the hospital are very encouraging.  Your prayers for her - and our family are much appreciated!  I am continually overwhelmed by all of the love we have received over the last 4 months. 

Today has been better for Eliana.  She was smiling, "talking" and even once tried to laugh!  Oh, have I  mentioned how very thankful I am that these are skills that she didn't "lose" and have to relearn! 

This morning, I began giving her meds every 4 hours - alternating tylenol with the stronger med.  The only difficulty is that the tylenol needs to be given orally and I can't do it when she is sleeping.  The other med I give through her feeding tube which is really nice as it definitely all goes in and it doesn't matter if she is awake or not. 

She has only had one bad crying spell today and that was  tonight around 9pm.  I fixed her a bottle of pumped milk.  The consistency is a little thinner than what she has been getting.  She swallowed and began gaggin on it - a lot.  I think it hurt her or seemed like it went down the wrong way and she started crying and crying.  I wanted to give her some "good stuff" to help her system better manage with the narcotics she is taking.  Poor baby!!!  It's hard to comfort her as I feel I have to be careful with how I hold her so as not to cause more pain with any bouncing or moving of her chest/ribs.  I often just cry and pray as I sing to her or speak softly to her.

One of the songs that I've been singing to her a lot this week is one that Joshua (7) made up just last week.  It's sung to the tune of "Rubber Ducky"

Eliana, you're the one!

You make life so much fun.

I love you and you love me.

But, bet of all we're family.

Isn't that sweet?  She seems to like being sung to.

She has also been getting hiccups - something she did even in utero.  They have never seemed to bother her, until now.  Now they hurt her chest.  I can see it in her sweet face.  Thankfully she doesn't seem to keep them for a long time, but there is nothing I know of to do to help stop them!

Please continue to pray for her pain - and for wisdom in how much of her meds to give her.  Please pray that we would hold her in a way that doesn't hurt her.  Please pray that she wouldn't get hiccups for a while.  Please pray that her recovery would be smooth and swift.

I praise God for all of the good He has done in healing my little girl and bringing her home!!!

With love,

Leslie

8 comments:

  1. We must sit down at the computer around the same time, I seem to find that I'm one of the firsts to respond.


    Continuing to pray for you and your beautiful daughter. I wish I could send you something through the mail. Is there any way I could get your snail mail and mail you something? my email is makeffer(at)sasktel(dot)net. If not, that's ok, I understand.


    Wishing you many more blessings as the days go on!

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  2. I'm so glad that your little one is home and she has the attention of her loving mama and family. About the tylenol, can you put that in her feeding tube and follow it with 5-10 ml of water to get it all in? I don't know if she is on fluid restrictions any longer or not. Or, maybe tylenol suppositories?...well, THAT would wake her too now, wouldn't it?


    Hope the special needs conference went well for Rebecca. Can't wait to hear!

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  3. Hey Leslie,


    I have continued to pray for sweet Eliana (and you and your family) throughout the week and have kept up with her daily progress. I read the post about her hiccups and the pain associated with them. My youngest had severe reflux for the first two years of his life. We found that when he laughed he would always get the hiccups and then cry with pain from the reflux they caused. Once we made the connection between laughing and hiccups, we tried to keep things pretty calm around him (especially with his silly brothers!) until he outgrew his reflux problem. I am happy to hear that your little sweetie is laughing, but could that be causing her hiccups?


    Just a thought...I know how hard it is to watch a little one suffer in pain.


    Love and Prayers, Cyndi

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  4. Rejoicing with all of you! God is good! Enjoy her~


    Mariah from FIAR boards

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  5. I"m glad she is doing better. I'd be interested to know if she can't have the Tylenol in her feeding tube because it's a suspension or some other reason. What other medication is she on? Is she on Captopril and Lasix? (and pain medication?) I'm just curious.


    Continued prayers.


    Love, Karen


    PS I love the little song Joshua made up. So cute.

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  6. Praying for you today. I love hearing that Eliana is trying to laugh. I know that must be music to your ears. Josh's song is so sweet. What a precious family you have. Praying for her pain to continue to get less and less and that you can hold her without worrying about hurting her very soon.

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  7. I'm so glad to hear that Eliana's day went better yesterday.


    Praying for complete recovery!!!


    Elysa

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  8. Leslie,

    So glad to hear your angel is smiling and feeling better! Love and prayers!


    Nakia from FIAR boards

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