Emily

We have had a tough week, but hanging in here at home. We finally got a clearer picture of her problem Sunday night. She really just has a common cold, but it's been lots of trouble.

She's struggled with feeds big time. This is a very typical symptom of her being sick, but just bad timing. She's lost two pound and that drove the GI drainage way up, and our ability to replace fluids way down. After two doctor visits and many calls, we have carefully managed her here. She might be on the upswing now (maybe?...hopefully?). She's still not back up to full feeds, but her labs looked okay today, so I'm doing better than I thought.

I'm pretty tired because she's been up coughing all night for the last two nights. She had a belly x-ray this morning, but not a chest film. If she keeps this up we may need to call peds again. She had formula in her belly yesterday, so we questioned the tube placement, but it was fine, so her tummy is just slow from being sick and backing up.

We are still praying she can start school with her friends, and that we find a school program that works for her. So far, she doesn't have a school assignment which is another thing to deal with.

I'm ready for this summer to be over. As much as I was looking forward to it, it's time to move on.

Those words clench my heart as I'm still missing Abby more with every breath.



 

Fever

Emily is sick. She's running a fever, nauseated, and not tolerating feeds right now.

Her temperature last night went up to 102.6, but finally went down with medicines around 4am.

Please pray she only has a little virus and nothing serious. She's been doing so well and really doesn't need a set back.

Thanks!

 

Sarah and Em

My cool girl, Sarah! She learned to play this while Emily was in the hospital. It's not that easy :). I love seeing her work hard to learn new things, and I love her heart for all kinds of music. She's a sweetie!

http://m.youtube.com/watch?feature=plcp&v=aJYhcKD-6DA

Emily is doing very well. After a little GI bleeding last week, which was probably just tube irritation or residual inflammation from the c-diff, and more trouble with the pump and air, she's had a good weekend. GI added Prilosec and carafate to her med list, and I think that is finally going to be what she needed to really turn around. She was putting out 600-800cc's a day from the g-tube, and we weren't putting that much back in, so she was always somewhat dehydrated. The Prilosec is an acid reducer, and immediately the g-tube drainage dropped in half. That is so much more manageable! The Carafate coats the lining, which helps with irritation, so she feels much, much better. Now we add two more to this to the rest of these. This is only her morning meds. I sure will be glad when she's back to normal!




2 more weeks until school starts, and she just might make it! I am thrilled! Her dental was a no-go. The pediatrician said it was too risky with her weight and GI status, but we'll try for September. We still have to find a school for her, but it will come. I hope.

I was able to spend Saturday with my mom, aunts, uncles, and family I've never met at a family reunion. It was a wonderful break from the house, and so much fun to be with family.




All things considered, we are doing great, which is such a nice thing to be able to say! Thank God for these days when all is well.


 

My precious Abby,

Eleven months ago, I struggled with wanting so desperately to hold on to you, and knowing how much you needed peace. I cried every day. I smiled at your sweet face each day too.   My heart broke as I felt our time together coming to an end. At the very same moment, I was so proud, and in awe of your strength. You have always amazed me!   As hard as you tried, we could all see that you were very sick and unable to do all the things you wanted to. I felt unbelievably sad as you struggled.  I missed so much about you, even then.

Today, I miss you even more. I'm desperate for an Abby kiss. I want to feel your little teeth scrape across my cheek and touch the sloppy wet place on my cheek. I think about it almost every day and wonder, if you are perfectly whole in Heaven, does that mean that I will never feel that again? As much as I've always wanted to see you run and play the way your friends could and be completely healthy, today, I want to hold you and feel you curl yourself in to me. I want your strong little head to push my arm out and complain about it as you laugh at me. All I know is my girl with CP, and I kind of want to hold you that way again.  It's been 11 months, and I'm still not ready to let you go.  

I want to see you smile, and hear your sweet voice. I even wouldn't mind being fussed at for a little while. What I wouldn't give for five minutes. Just to feel you breathe. To know you are here with me. Oh, how I miss you!

I shopped for school supplies for the girls this week, and I had to stop myself from picking up things I knew you would like. I kept seeing little things and thinking "Abby would love that" and then remembering you have no need of such things now.
Remember last year? I bought you a small pink backpack with a smiling frog on it. I knew you would never use it, but I also knew you would love it.  Your face lit up when you saw it and you laughed as we put a few items in it to carry around the house. I had to go to my room for a few minutes and let the tears fall, already grieving for you as I knew you would never go to your beloved school again.
Now I know that was nothing. At least you were there. Not buying a backpack at all was a thousand times harder.

We are almost at a year, and I don't want to be there yet. I don't want a whole year to go by. Time will march on, and before I know it, two or three will have gone. It seems too fast. Too far away from the last time you were here with us smiling that big Abby smile.

I was at the park with Emily today. I put her in the swing, which of course she loved. You loved it too. I was thinking of you, and the way you and Emily took turns. You were both getting so big that taking one of you out and putting the other one in was a challenge. You guys loved it so much, it was worth it. As I was thinking of it, a man behind me startled me out of the memory by calling "Abby, come on! Abby! It's time to go. Abby!" I just closed my eyes, and ached. I hope he knows how blessed he is to call her name. I miss hearing your name, my sweet girl, and I sure hope there are swings in Heaven.

I've cried through every second of writing this, which I know would upset you. I'm sorry, I can't help it. There are not words for how deeply and profoundly you are loved. I think you might truly know love where you are, surrounded in perfect love. Where I am, all I have is my heart, from which you will always have all my love. ~Mommy

I'm loving this song, and knowing she had all of me.
http://m.youtube.com/watch?v=7vF4tc9QREY