One year ago…..

On March 29, 2009, we almost lost Maddie to sepsis. Our visit to the PICU was the scariest time of my life, even scarier than the leukemia diagnosis. The prognosis we were given was something that no parent should ever have to hear. In fact, Madeline has been given quite a few diagnoses that no parent should ever have to hear, but the urgent nature and fear in our doctors’ and nurses’ eyes in the PICU over those days let us know how unlikely it was that we would get to walk out of there with Madeline alive.

I wish I could say how far we have come since that day. But we have had very little change in our little girl since then. Except that she is growing and starting to look like a big girl. And she is more beautiful every day. As she gets bigger, I am learning what it is like to have a child that is different. The looks we get out in public……..wondering why she isn’t walking, talking.

We are actually going through the IEP process now and are about to start her in school. We are still working out the details but I am hopeful we can come to terms that will provide her a safe environment where she will have the opportunity to learn, if her seizure riddled brain will allow.

We are also trying the anti-epileptic Lamictal again. We have tried it before but had to discontinue because of possible side effects. It is a very slow titration and we won’t know if it is working for her for about another 3-4 weeks. I would greatly appreciate prayers that this is the drug that finally beats her seizures. We really need that.

But back to the subject of remembering back to a year ago…….As much as I am devastated to see the regression in our child caused by 15 months of uncontrolled seizures, I am incredibly proud of and amazed by our Madeline. In the 29 months since her leukemia diagnosis, she has endured 16 months of very intense chemotherapy, now 15 months of uncontrolled seizures, a life threatening blood infection, and numerous other hospitalizations for other more minor illnesses and side effects while on chemotherapy.

I would love to say that I am sure that someday we will have a happy, healthy, thriving child despite it all. But I am not certain of that. What I do know is that we have a happy, loving child every day in spite of the frequent seizures. And she is loved. So we will march on, hopeful that someday she gets the healing she deserves.

Here are some pictures of her recently:

I’d also like to add how amazing my husband is. I am so proud of how hard he is working and the incredible job they are doing in their part of Helmand province, Afghanistan. We celebrated our 9th wedding anniversary this month. We are getting closer to the end of the deployment, but until he is home safely, my fear level is pretty high. This has not been a by-the-book deployment for us at all. His Battalion has lost many Marines and many have come home badly wounded. A good friend and peer of Brandon’s recently returned home because of a terrible injury. All of them are in my thoughts and prayers constantly. So I am incredibly ready for this deployment to come to a close.

In closing, please keep Madeline in your prayers. Our troops who are in harm’s way right now would appreciate your prayers as well.

Thanks for checking in.
Love to you all,
Liz

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9 thoughts on “One year ago…..

  1. You’re strength is amazing, and you’re photographic skills sure ain’t anything to sneeze at either.

    I hope Lamictal is going to do the trick. I know you do too.

    Always in my thoughts…

  2. Thank you so much for the update. I pray for Brandon’s safe return, along w/his battalion and that this drug really will give Maddie the long-awaited relief from the seizures! Holding you up in prayer. Tell your Mom I said Hello & we miss her at CBS (if she’s there I haven’t seen her recently.)

  3. We have been following Maddie since Sarah (daughter Sarah Bolenbaugh) led us to your postings. We have not forgotten dear Maddie and your family. Our prayers are with you and your family.
    Love from PA,
    Abigail’s Grandma and ‘Pa

  4. Maddie is a BEAUTIFUL little girl. Your love for her is so apparent through your words.

    I hope the IEP and Lamictal goes well. I will keep Maddie and troops in my thoughts along with you.

  5. Hoping the Lamictal works. And hoping you get what you need from the IEP. And what she needs from the IEP. Don’t sign anything immediately. You have a right to take it home and consider it.

    The photos are fabulous.

  6. Liz- meant to leave you a comment on the IS gorup, but forgot to. I can’t get there from work so I’ll post here.

    I am sorry to hear about the newest turn of events. Though it’s an “answer” it’s an answer that just leads to more questions. I’ll be sending positive vibes that you find the person that can hopefully help you get those answers!

  7. Hi,
    Just wanted to let you know that I am thinking about you always. Even when you don’t blog. Don’t feel pressured to write anything – just know that there are people out here who consider you a dear friend and that we care about you through thick and thin.
    Sinead

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