Thursday, December 29, 2011

I'm trying my best to see the bright side!

We spent an hour with the Infectious Disease specialist yesterday - after another 5 days on the Vancomycin, Addison's diarrhea is not improving and she's still symptomatic. Every other time, even though the infection has always come back,  she still always starts to feel better for a few days and the diarrhea quits. Now she's showing signs of dehydration and I am just hoping to avoid another hospital stay. I don't understand why she's not reacting to the medication anymore. There's nothing else left to try but a 6 week trial of 'pulsing' the Vancomycin and the next step will be a stool transplant. I'm just frustrated that she's not able to fight off these 'normal' things like the rest of us, and we have no idea why her body doesn't respond to treatment.

She's had diarrhea form the C-Diff since October. I'm tired of bleaching things, of washing sheets, of throwing away infected clothing and pajamas. but mostly I am tired for her because it's so damn sad that she doesn't know anything else anymore besides feeling like crap all the time. Can you imagine having diarrhea for 4 months straight, many times a day? And not being able to ask for help or tell anyone how you are feeling.

I'm usually not so negative, but I feel like beating my head against the wall. We've reached a pinnacle once again where we can't help her, there's no more testing to be done, and we are just stuck living out this shitty groundhog day over and over and over. I don't even remember what 'normal' life was like anymore....its such a distant memory to remember when my days weren't consumed by therapy, pooping, feeding, neurological regression, drs appts and all the other things that we have to worry about now.

Okay - time to go get it together and stop feeling sorry for myself! Thanks for listening.


  1. I completely understand how you're feeling, especially with the addition of your pregnancy hormones (tough enough for those of us without any additional challenges to deal with, let alone trying to help your baby feel better!). I hope Addison's diarrhea starts clearing up soon, SOMEhow! Sweet little A deserves to feel wonderful, not crummy. Let's hope that 2012 is the year for answers and happy, healthy days!

  2. You don't know me but I have been following your blog and am praying for your family and sweet little Addison! She is so beautiful and you are doing such a good job, what a lucky little girl to have you for her mommy! Praying praying praying for answers!!!!

    With love from TN,

  3. You are such a strong mom!!!! Your blog brings tears to my eyes. I will continue to pray everyday for your sweet Baby Girl, and hope 2012 is the year of miracles!!! So far though, Addison is a miracle and a blessing.
    Keep your head up mama, better times are ahead. Don't stop believing!!!!

    ~ Love and Warm Wishes
    from Boston, Mass!!!~

  4. Praying for little A and her recovery.
    the Kecks

  5. Kim- everybody has the right to vent their frustrations. I can't even imagine how you feel right now. I get annoyed when Jackson throws his food on the floor. It's okay to feel overwhelmed, and even mad sometimes. It is hard to see your child suffering, and not be able to do a damn thing about it, and if you weren't upset, you wouldn't be human. You are a strong wife, mother, and woman, and you should be so proud of all you do, even if you have bad days where you can't be so strong. You don't cry because you are weak, you cry because you've been too strong for too long. Keep doing what you are doing, and God will get you all through this.

    Matthew 15:28
    Then Jesus answered and said to her, "O woman, great is your faith! Let it be to you as you desire." And her daughter was healed from that very hour.
    Your faith will get you through :) This too shall pass. Keeping you all in our prayers.

  6. No one can ALWAYS be strong, it's okay to get frustrated (and even feel "weak" sometimes). You're in a frustrating situation, it's normal to need to vent and even feel angry.

    I pop in all of the time (I'm from your November 2010 board) and pray for Addison very often. Most nights I pray over my daughter's crib quietly while she drifts off to sleep (she's my "good luck charm").

    I'm so that Addison is having to endure this needless seemingly never ending discomfort, and I'm so sorry you are having to endure it with her (I don't think any other pain compares to watching your child suffer). I'm praying that 2012 brings Answers for Addison. God bless her, and your entire family. She is beautiful and precious, I pray that her life becomes as beautiful and precious as she is!

  7. ^ Edit, I"m "sorry" not "so". Should have proofed. Again, you are in my prayers! Blessings for 2012!

  8. Just wanted to let you know that we continue to pray for answers and healing for baby Addison. I admire you for your love, strength and faith as you go through all of these struggles. Whenever my little ones get sick, I always pray that it be me who is sick and not them. I am finding myself thinking this with Addison although we have never met. I wish there were something that we could do to make it all better. So I'll continue to pray for you and your family. Take care of yourself and baby #4 too. =o)

    Faith and Hugs,
    Eydie from Chandler Az.