Monday, March 19, 2012

Prayers for my sweet Addison.

It was a rough night last night babygirl... and we already knew you'd been having trouble sleeping, but we figured it was just the change in routine and being away from your own bed this time. Just before Christmas, we noticed we could hear you messing around in your room after bedtime. Often at 3 in the morning, you'd be sitting wide awake in your crib. You wouldn't cry or do anything, just sit there and play with your blankets. We saw how exhausted you were and we bought a video monitor to try and figure it out, because if we physically came into the room, you would scream and scream the next time we left and we would all end up being awake half the night.

For 2 weeks now, daddy has been walking you in the stroller here at the Ronald McDonald House because you simply won't sleep. We would get you to sleep, and you'd either wake up (and refuse to fall back asleep) or you'd never get sound enough asleep and you'd just be restless and miserable. Last night we put you in your pack and play and for 30 minutes, in the pitch black, with no toys or anything..... you made sounds with your mouth and laid there yelling and messing around. All while you were completely just exhausted. You started to cry finally, so we got you out and just put you in bed with us and watched you. It turns out, a lot of your little hand and foot motions that are so subtle during the day are getting much more extreme at night.

I don't think I will ever forget the feeling of you laying between us, both your little legs just flexing and relaxing, over and over and over for so long that I realized there was no way you could be doing it on purpose. Your little hands too, were twisting and rubbing on everything - your hair, face, dad's shirt... you couldn't help it. It was so obvious that you needed and wanted to sleep but your body won't let you. I'm going to fix it baby, mommy will find out why your body is doing this and get you some medicine so you can rest again.

Its not fair, everything is already SO hard for you - and now you've been doing it all on only a couple hours of sleep a night. Its stressing everyone out, especially daddy, because he is spending hours in the middle of the night, just pushing you in your stroller until you finally just pass out from exhaustion. I want to make it all better for you, but Audrina needs me too at the hospital, and Brooklyn and Lily aren't used to me not being here.  I am so sorry I can't devote every minute of my day to trying to make your life easier because you know I would. Simply put, I'm doing the best I can.

Its been 7 long months since I heard your beautiful little voice whisper "Night-night!" when I tucked you in. Will you talk to us again please? Your doctors all thought you would just start up again one day, and it never happened. Where did all those words go baby? I wish you could tell me what you feel. Do you understand the things I tell you? Daddy and I talk to you so much... you know how much you are loved, I don't doubt that for a second.

You have the most beautiful smile in the world. I like to think God maybe blessed you with this current unawareness... because you've suffered more than any 1 year old ever should have to and you'd never know it from that amazingly happy expression you have. You are so strong, and I am so proud that you're mine. I still have faith that we will figure out a way to make your belly work right, so you can be comfortable, before you are old enough to understand or remember what you've been through.

If you're reading this someday, princess; I knew you could do it. And whatever your limits may be, Daddy and I will be there to help you push right past them. You are loved by a God with no limits.... and while this challenge may have taken us by surprise, it's not a surprise to Him. I struggle to be patient, when I pray for a miracle for you, but lately I find myself thinking that maybe the miracle IS you. I know in time, understanding will come.... I love you, sweet girl. Keep fighting.


8 comments:

  1. I have been reading your blog on sweet Addison for a while now, & I so wish her exact condition could be diagnosed!! It brakes my heart to hear of lack of sleep! I'm just going to throw this idea out there but I'm wondering if her regression in speech could be partly due to her lack of sleep. I know that at this age they need at least 10-12 hours of sleep a night. I hope they can get her some relief soon! Hugs & prayers for precious Addison & your lovely family!!!!

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  2. I am one of your fellow BBC Nov 2010 mamas, this brought tears to my eyes. Gosh I wish that your sweet Addison was just ok. I wish there was something to help her sleep and make her alright. I think about your family a lot and you should know there are a ton of us BBC mamas routing for your sweet wonderful family.

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  3. Oh Kim. You are so strong. That broke my heart. Praying for baby Addison! -The Burkey family.

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  5. While you are trying to find some answers you may consult with an OT for some sensory things to try or try some massage and deep pressure activities relax her ( it may have to be done for 30 min or more prior to bed) It may do nothing but I had some success with my daughter who had extreme sleep issues from 1 month to 8 month. We still do not know the cause but she only slept a total of 4 to 6 hours and that was spread out through the whole day. Hang in there.

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  6. How I wish that I had some suggestions to share with you that might lead you to answers. What I do know is that God has blessed you with Addison and has blessed Addison with you. I don't know that any other person would be as loving and have the strength to fight for her little girl like you have. Thank you for everything that you do for her and don't give up. We will continue to pray night and day for the right answers and Sweet Addison and her full healing.

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  7. Hang in there momma. Your love for Addison is so fierce and apparent-God will honor your efforts and meet you halfway. Keep the faith and keep loving that little girl the best you know how. Weeping may endure for a night but joy cometh in the morning. Keep trusting God for complete resolution. He is able to heal Addison.

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  8. Im on the Nov bb, and reading this brought tears to my eyes.I cant imagine having to go through this, you are one very strong woman, and Addison is one very strong little girl, that is blessed to have you as a mama. I hope you find answers soon for your sweet baby girl. my prayers will continue to be with you and your family.

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