Good month

There is so much to say about all that is going on with Maddie right now, but I just haven’t had the time. The most exciting thing is that as of the 18th, she had not had a big seizure in a month. A whole month. That part feels like a dream to me. She has not had a drop in three weeks. This has changed our life. I still know it may only be temporary, but to be able to get a sneak peek into what our kiddo is like without all the seizures is amazing.

Her walking is getting better everyday. Thursday and Friday I let her walk unassisted down a very long hallway in her school. With concrete floors! Parents whose children have never had a drop seizure won’t understand the enormity of this. But she is really making big improvements in her walking.

Thursday night as I cooked dinner, she was making laps back and forth across our kitchen and back hallway. She was so proud of herself, and she was really trying to go fast. It was almost a run. And it brought me back to when we visited Brandon’s new home in Quantico in August of 2008, when she was 20 months old. She was doing the same laps, with the fast walk, pumping her little arms then.

Aug 2, 2008

I guess I could be sad about the fact that Madeline will turn 4 at the end of this month and that we are just beginning to see her do stuff she was doing at 20 months. But I am not. I am thrilled. To get to see her making herself laugh, a bit of a sparkle in her eye, even the beginnings of that terrible toddler defiance…….One of her only words right now (the verbal stuff is not coming back as quickly as walking) is no. And she likes to walk around and say no to all the items I tell her are no-no’s. I must say “no” a lot. She is not playing with toys appropriately yet, unless you count balls, because all she does is throw everything. But she enjoys it, and that is wonderful to see.

It isn’t all sunshine and roses though. I’m incredibly grateful for the amazing improvements we are seeing, but there are side effects too. The mood swings are pretty wild. Somedays she just cries half the day. And I have no idea why. She also has some tummy distress, and is frequently refusing to eat or drink. For a skinny kid, this is not good. Plus it is incredibly frustrating when she spits everything, including her meds. It scares the crap out of me to think that I might not be able to get her to keep her seizure meds down. She seems to dislike being restrained now that she is enjoying the newfound freedom of walking. So the carseat, jogging stroller, and high chair are really not fun for her. This makes life a bit difficult at times. I’ll take these problems anyday over the constant seizing.

And as far as seizures are concerned, I am still pretty sure that she has some very mild spasms as she falls asleep. But that is the only time that I am convinced she is having seizures. We will likely do an EEG sometime between now and Christmas to see if we are really seeing the improvement we think we are.

On the subject of testing, we did go to Chapel Hill last week, but we changed the type of testing she had. We decided to do a skin biopsy to look for mito instead of a muscle biopsy. This meant she did not have to be put under anesthesia for the procedure. Instead she just had a local anesthetic and we held her down for it. It was no fun, but was over fairly quickly. We also had a number of other blood tests drawn. So we’ll wait weeks for the results of all of those tests.

There’s another bit of info from recent blood tests…..A few months back we did a gene microarray on Maddie and found that she has a small defect, a duplication of two genes on one chromosome. There is no data that suggested that these genes might in any way be linked to her diagnoses, but of course we wondered. So Brandon and I were tested as well. Brandon’s test came back normal, but mine did not. It confirmed that I have the same gene duplication as Maddie. I just found this out, so I have not had my genetic counseling appointment yet, but in an email Friday morning, Maddie’s geneticist confirmed what I already suspected, that this most likely means that it is a “benign familial variant” which is unlikely to be the cause of all her issues. So this mainly means we still do not know what caused her epilepsy, but the number one theory is still that it was caused by her chemotherapy treatments.

At this point we are just trying to enjoy every minute. We are so thankful for the good days we are having and we pray that the improvement continues. I have tons more to say about it all, but no more time. Chasing a toddler is much more fun than typing……

Sunset at the beach last week

Love to everyone,
Liz, Brandon and Maddie

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11 thoughts on “Good month

  1. Liz –
    What a beautiful picture of Maddie at sunset! This post just put a smile on my face. You can feel the happiness in your words. I pray she keeps improving leaps and bounds.

    Have a wonderful Thanksgiving!

    Carrie

  2. Awesome!!! I’m just SO happy for you!! This is truly an answer to prayers! You have such a good outlook on things…you DO have a lot to be thankful for!! Im so glad you tried the Banzel! I also wanted to let you know (but you may already know this)… the skin biopsy almost always comes back negative…even in kids that do have mito (Reagan’s was 100% negative).

  3. I’m so excited for y’all! So so glad that Maddie is doing laps and saying ‘no’ and hating her chairs! lol That would probably sound crazy to a lot of other parents, but some of us definitely know these are actually great accomplishments! I would take a screaming, defiant, opinionated ball of energy over constant seizing any day of the week! 🙂

    She looks beautiful…and happy! And you sound wonderful! I know you’re cherishing every moment.

    Holli

  4. Thanks for the update Liz. Glad things are still going well.
    Love the photo of Maddie at sunset. She is so adorable. I talked with your mom and she told me how beautiful you looked the night of the big Marine Corp Ball. I told her to tell you to put a photo of you and Brandon from that night in your next post. I would love to see you in the beautiful dress she described. Love to all,
    Loretta

  5. Lots of swirling. But not enough focus to jot it down. Just know that I understand…and I’m thrilled…and I’m sad…and I’m hoping…with you guys!

    …d

  6. Even an old Navy man can shed a tear once in a while. I have done that today. Maddie I am so happy for you!!! Things are going to get better and better for you. The prayers are working, and all of us continue our prayers for you and your wonderful parents. Blessings to all of you. Love you Maddie, Liz and Brandon.

  7. I know you are scared that it might only be temporary. I get it. I understand it. I would be too. But let’s hope it isn’t. Let’s hope it is the foundation of something far greater, something that reaches way beyond anything we ever dare dreamed of.

    It’s great news, and great to hear about.

  8. Thanks to all of y’all. We love the encouraging messages. It’s really amazing how things change here daily. Today she has been entertaining herself more than ever and is furious if we limit her access to part of the house. Now that she has her freedom she wants it all! So we are spending the weekend child-proofing.

  9. It is awesome to have this positive news about your little angel. I was smiling when I read you had to be chasing her around the house – and the walk down the hall at school. Small steps, but great ones just the same. By the way the three of you look great. Thank you for sharing.
    Love Jeff and MaryKay

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