A new year

First things first, merry Christmas and happy new year to everyone! I have been a bit silent lately. I am looking forward with hope to this year….that it will be the best so far for Maddie.

Lots has gone on since I last posted. We had a wonderful Thanksgiving, spent with my family in Charlotte. We ate well and enjoyed family time. We were especially thankful for Maddie’s improvement. As soon as we returned to Camp Lejeune, Brandon left for a training activity in Virginia for over two weeks. During that time, Maddie and I made our first trip down to Kiawah in a long time and we visited with the rest of my family. My dad, brother and I all ran the half-marathon. It was awful…..40s and raining the whole until I hit mile 12. But we completed it. I still ran better than my first but it was not the race I had hoped for. Oh well. There are worse things.

Maddie and I returned to Lejeune a few days before Brandon came back from Virginia. They finished the renovations to our house in time for us to decorate for Christmas by mid-December. Given how little time together we’d had lately, we decided to stay here for Christmas and New Years. Most importantly, so we could actually relax a bit and enjoy our time together. But also because Maddie had been doing terribly in the car on trips and we had just seen family Thanksgiving and early December. On the day that Brandon was due to return from Virginia, Maddie’s seizures decided to come back too. They have been back since then despite medicine changes in an attempt to get back to where we were.

We are pretty crushed. We definitely had begun to see a different future ahead of us. I was thinking maybe I could have her potty trained by kindergarten. She is almost 3 years behind her peers, but we could see forward progress for the first time since seizures began in December of ’08. We had planned to turn our new sunroom into her playroom, but it has a tile floor with concrete underneath so that is just too dangerous for her now that she is falling again. I guess the mistake we made was letting ourselves think too much about the future. That is what hurts the most.

So the evil seizures are back. And she had just learned to enjoy her new-found freedom, so controlling her is harder than ever. She doesn’t understand why I can’t let her play without holding her hand or her shirt at all times. But the drops that make her fall to the floor face first are back. So danger is everywhere for her. And she doesn’t get it, so I am constantly frustrating her by stopping her from doing the things that she could do just last week. It really sucks.

There is a positive side. The brief respite from seizures must have allowed her brain to heal, or at least it allowed some progress to be made. And that is sticking around mostly. She is using a handful of words and is very communicative. She lets me know what she wants which is awesome. She has learned some motor skills that she has
never really before mastered. Unfortunately, her balance and
confidence walking has already started going downhill since the seizures returned.

It was good while it lasted. But somehow the taste of a life closer to “normal” makes it harder to return to the seizure filled life.

There a couple of other things.

Two days before the return of her seizures we got news from her geneticists that she had tested as having a gene that is responsible for a type of mitochondrial disease. It’s not conclusive yet that she has mito. It’s a bit complicated, but the basic science is that she has one copy of this gene (she is a heterozygote). If you have two, you definitely have this type of mito with all the horrible stuff that goes along with it. But if you only have one copy (as she does), you have to have a few other genetic changes also in order to have the associated mitochondrial disease. We are still waiting on those tests.

I’m not going to go into detail about which type of mito it is because I don’t want you to google it and see all the horrible stuff associated with it. We did not suspect she had it…..we actually only tested for it because we wanted to be able to try the drugs depakote and depakene if she failed her current regimen. Kids with this type of mito often experience sudden organ failure if they are put on these drugs. So now we have two less to try…..Even if she is just a heterozygote and does not have the mitochondrial disease, it’s too risky to try the drugs. Glad we never did before. Good call, Dr. Greenwood!

My grandmother Izzy is extremely sick too. Just befroe Christmas, she underwent surgery to remove an infected gallbladdder. Unfortunately, by the time it was removed the infection had spread and she has now been in the hospital for almost a month fighting the initial infection, a blood clot, and aspiration pneumonia. Please keep her in your prayers.

I typed most of the update almost two weeks ago but never published it because I couldn’t find the time to finish it. Since then, I accidentally poured a cup of coffee into my new MacBook. Which I haven’t had time to replace. And where I kept all pics of Maddie for the last seven months with no back up. I’m still hoping they can be salvaged but the hard drive was still wet when took it in the first time. Learned a lesson there.

And this Saturday Maddie had her first sort of normal kid injury. It was caused by her lack of coordination rather than a seizure. She fell face first and put her front tooth through her lip. The ER visit was not too bad and she didn’t require stitches. It is healing much more quickly than I expected.

So that’s how things are going. I hate to be the bearer of bad news but that’s pretty much all we’ve gotten lately. But she is super amazing and we couldn’t love her more.

Love to everyone,

9 thoughts on “A new year

  1. I’ve been waiting for this one.

    I knew it wasn’t going to be good. It couldn’t be. You’d been cryptic before and I didn’t push, figured I would just wait until you were ready.

    I’m really sorry. The fact that they are back now is bad enough, the fact that there may be a genetic factor preventing some medication trials equally as frustrating. I also don’t know enough about mito to know if that would rule out any type of surgical options either, but I will leave it alone, because I think you’d probably, as you suggest, prefer it that way, a ‘google-less’ response, and instead just open minds and positive energy.

    I’m also really sorry to hear about your photos…but you should be able to recover them. The liquid should not have damaged the data too badly. It may cost you some money, but it would be worth it, but I have seen some pretty amazing data recovery from hard drive damage worse than liquid spills. I hope you can get the photos back.

    Two words. Western Digital. They make a great, affordable series of external hard drives that have never failed me. I swear by them. I have one sitting next to each computer a this very moment. And every couple of months I disconnect those and back those up to a master book. Back-up the back-ups. Always. Trust me on that.

    It’s good to hear from you, even though the news sucks.

  2. I have prayed till I almost can’t pray anymore, and then I realize that it is not only in His hands but in His time . Maddie will eventually beat this thing. I know that with all my heart. Love to you Maddie and to your two wonderful parents who receive as many prayers as you do.

  3. Liz
    Thanks so much for the update. Your mom had told me the seizures had returned and I had hoped with all my heart it would just be a matter of adjusting the medication. I am so sorry to hear there may be additional problems. As your friend Doug says in his post “Maddie will eventually beat this thing”. I just “feel” that she will. I am so sorry for all the ups and downs she and all of you have had to endure. All of you are constantly in my prayers, especially your beautiful and precious Maddie.
    And, also your grandmother too. Love to all, Loretta

  4. I am so sorry. I know how hard it is to have the seizures return. I wish I had words of wisdom or comfort. But just know that I am here for you…thinking about you all…and hoping with all my heart that Maddie once again regains seizure control for good.

  5. Hello – I was thinking about Maddie and your family just recently and sooooo hoping that things were going along okay. Seems like the medicine that helped just stopped working? Or I guess things keep changing in the brain – so this affects how the medicine works. So much frustration all the way around for all of you – I expect the running may help with some of that. I also was thinking of you because a 28 day old infant here in my area was just diagnosed with leukemia prior to Christmas – she has 4 older siblings and there has been a huge amount of support generated for the family – which is great – they have a tough road ahead of them – as only you know so so well…..

    Take care – I hope there are some things on the horizon that may make a difference for Maddie.

    Connie (and Sophie dx at 14 months, not almost 6 and Jenny – 17 months old)

  6. I’m sorry. I’m gutted for you. I hope you find good padding for the floors and walls so our special girl can continue on her journey of discovery. We have an inflatable bouncy house that we use in the living room but it’s more of a sometimes toy. I think maybe look around for old gym mats and those puzzle piece floors.

  7. (((hugs)))

    The drops are excruciating. The fact that they were gone and returned is heartbreaking. I am so very sorry. We’ve never had great seizure control (or even good), but we have had drops come and go. It makes a HUGE difference. I’ve learned I can pad almost anything. Wish I didn’t have to. Wish you didn’t either. I’ll be praying you guys can regain seizure control again. You did it once, you can do it again.


  8. Ok… so now that I understand more about Maddie.. and of course your need to run…please oh please come by and get me for a run.. I need a motivator.. I believe that just might be you!!! I believe in Maddie this year and like always…one step forward 4 steps back..but in the end you will get there, just not as fast as you thought!!!!
    Love the blog… can not wait to hear that you get a home in my neighborhood…praying you do!!!

  9. Hi Liz – got your email this morning. Thanks so much. I just read this post and will read more. I can understand exactly what you are writing about.

    BTW – Maddie is a beautiful little girl.

    My email is vanessainfanzon@gmail.com if you want to talk more.


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