Hello Again

So I have been meaning to write an update, but I just haven’t really had much good to say. And I usually try to put a positive spin on things, and I am not really sure how to do that right now.

Maddie is still on the ketogenic diet. We have seen no improvement whatsoever. Seizures are a little different, but she has seizure activity a larger percentage of the day than before the diet. So that isn’t good. But the hardest part is that she has also regressed on the diet. We are not seeing that improved clarity that we once thought we were seeing and that so many parents love the diet for. So things are just not good here. It has been three months so I am in the process of trying to make a decision whether or not to continue the diet.

The positives are: that Brandon is okay, but is very busy. We are approaching the halfway point of his deployment, so that is exciting.

Another good thing is that Maddie and I have actually been living in our house in Camp Lejeune and enjoying getting to have our own home again. It means that I am very busy with the food preparation and other household chores which are difficult with a child who has seizures all day and wants to be on my hip all day (or all night) long. She currently has day and night confused again, so that is a joy too.

And another positive, Maddie and I were just in Charlotte for her monthly oncology appointment and her bloodwork looked good. So we believe her leukemia is still in remission. Hooray for that!

And somehow I just managed to sound positive…..not sure how that always happens. Please keep Maddie in your prayers. She desperately needs them.

I will try to update more frequently, but I’m not making any promises……

Love to everyone,
Liz

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16 thoughts on “Hello Again

  1. It was so nice to get an update….thanks for taking the time to keep us up to speed! I can’t imagine doing all that you do…all by yourself. It’s hard enough with 2 parents around.

    Poor Maddie. I wish the diet worked a lot better for her. Do you have other options to try if you discontinue the Keto diet?

    I will say lots of prayers for the @#$% seizures to disappear!!

  2. If wanting could make a miracle she’d have ten of them. I want so much for keto to work for her and I am so sad she still is plagued by seizures. I’m glad that everything else is going well.

  3. Hey Liz
    Thanks for the update. I know that is tough for you to do, especially when things are not going well for Maddie.
    I am glad all is well with Brandon considering the circumstances and that half his tour is over. I pray for his
    safe return to you and Maddie and that stressful situation will be behind the three of you. I wish things were better for Maddie. I still hang on to hope for something to work for your precious little girl. Prayers are still being said for her and you and Brandon every day. Loretta

  4. Liz,

    You hang in there!! You are an amazing mom and I Know you can figure this out – the diet and all. Just stay strong and dig your heals in deep and you will find your way. Your time is coming but you have to keep the faith. We pray for you and your family daily.

    much love,
    Linda

  5. Hi Liz, Maddie and Brandon

    Good to hear that all is okay with Brandon, and so sorry that the keto diet has not done what maybe it could have – not yet anyway – or maybe not. that must be tough to be having these results right now. I can hear your enjoyment of being in your own home. I really hope you get help sometimes Liz from time to time – as with the days and nights mixed up – ongoing sleep deprivation is so hard. I think about you often and was so glad to see the update. Just hope that something will start to work against the seizures….fingers and toes crossed and praying.

    Connie, (Sophie almost 5 OT for ALL, and Jenny almost 6 months)

  6. Thank you for posting an update. I kid you not, Maddie has been on my mind the past couple of days. I was hoping no news is good news. Although, your news isn’t all that bad. It stinks that she is still having those stupid seizures. I was so hoping those had improved. But….it’s fantastic that she is still in remission!!

    Love the header of the blog. Those pictures of Maddie are adorable. She is, without a doubt, a stunning little beauty.

    We will keep you guys in our prayers!

    Joany and Carly

  7. Hi Liz! I continue to pray for y’all whether you update us or not! I’m sorry the journey hasn’t gotten any easier! I am excited about your news surrounding the leukemia! At least there is one shinging star. Meanwhile, I’ve signed up for another Team in Training event to keep raising money to fight Leukemia. Your family is SUCH an inspiration to me in this endeavor.

    Love and prayers.
    Lori in Atlanta 🙂

    P.S. The new photos are adorable! She is a precious little girl!

  8. She is SO beautiful! I’m glad you updated the banner pics too.

    I’m so sorry, Liz. I have no words of profound comfort of my own…so I’ll just ditto Sinead.

    If wanting could…

    xoxo

    …danielle

  9. Liz, I am so sorry to hear Maddie is not getting better on her diet. I think about, and pray for all three of you everyday. If you ever need my help I am only an hour away. I will come anytime. Just call me. 252-269-2745
    Tom

  10. It is so important to find the positives and focus on them, if even for a moment. And I saw a few in here. Hubby is ok, tour is half over and leukemia is still in remission. All great things.

    If you feel you’ve given the diet adequate time and tweaking I guess it’s time for something new. I hope you find what works.

    Jen

    P.S. Love the new pics up top!!

  11. Liz, you are the most amazing person I know, and I’m not kidding. To think of all you have been through with Maddie and you just keep on going, doing the very best for Maddie, and in the meantime trying to find something positive to tell us! That is such a huge accomplishment, more than I could ever imagine doing. I will keep you and Maddie in my prayers and hope for a miracle. I am so glad that Brandon is at least halfway through his tour and you can begin the countdown for his safe return. I so wish there was something we could do for you….

    Love,

    Susan

  12. hey, you…

    sorry that things haven’t been going as you had hoped with miss maddie….glad to hear that mr. brandon is staying safe, though! being able to say you are half-way through the deployment usually helps one to breathe and sleep a little easier…hope this is the case for all of you, even in light of what is going on…

    we are here if you need us….if maddie is up to it, and you want a visitor, that is cool….we will be there. if you need help with running errands, don’t hesitate to ask….i will go to the grocery store, scrub floors, clean windows…you name it!

    take care……we will continue to pray for the best….
    love,
    us

  13. I know how hard and time consuming and everything else that the diet does to your life. I am so sorry to hear that you have not seen any improvement. It sucked when it didn’t work for Sophie but it was a huge relief to be off of it. To feel a bit more normal…whatever that is.

  14. You don’t need to make any promises.

    Those new photos up top are AMAZING. Hope you are having an OK day today, I know things have been very hard.

    All three of you are in my thoughts often.

    And as always, you are an inspiration to all of us with your attitude in the face of such…such…a monstrosity.

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