I’m getting really bad at this….

I’m going to quit apologizing for not updating since I’m unlikely to change that habit anytime soon. Life is busy.

What’s going on here is that we are still trying to regain seizure control and we aren’t there yet. Side effects are getting to be a big enough issue that we aren’t thinking we’ll get there with the current combo of meds. But we aren’t giving up on this combo yet…..we are trying to have patience and give each increase a chance to work.

Maddie is only able to walk with one of us holding her shirt or a new harness we got her. That is partly because she is still having seizures that cause her to fall on her face and partly because her coordination is getting worse and she has an ataxic gait. She is also far more lethargic than she was at lower levels of the Banzel.

I still go to pre-school with Maddie four days a week. We hope we can make some changes to her classroom situation so that I can leave her there for her class each day. It will be a major adjustment (which I know we need) but at this point it is very difficult for me to keep her safe because of the seizures, so I am not sure how to let someone else take on that responsibility.

So we remain hopeful but we know another med change is likely to be on the horizon.

Also on the horizon is Brandon’s departure. Rather than leaving this summer as planned, they will be heading out early, in a few weeks or so. This was not expected, but we are nothing if not flexible at this point. I think the only rule in our lives right now is that things always change.

And now a few pics:

First, of when she was doing really well……


Seizures returned Dec 18th and were pretty mild at first.

Here are a few from around Christmas:

Christmas morning

Christmas Eve

A few from after Christmas:

Having an ambulatory EEG at home Dec 28

More from the EEG

One of our many snow days

More recently, I’ve taken less pics, partially because she has fallen a lot and been cut or bruised which I haven’t wanted to memorialize. But also because I can no longer let her walk alone which makes photo ops hard to come by.

Still smiling after her first ER visit for a faceplant

Healing pretty well

Early February

So that’s all for now. I hope to be able to update next time that we are able to let her walk unassisted again. That would be huge for her.

Love to everyone!

Advertisements

12 thoughts on “I’m getting really bad at this….

  1. Liz, She is a little doll. Please let me know if I can ever come to Jville and help. I would be thrilled to do anything I can to help you.

  2. Oh Liz,
    Maddie has turned into such a beautiful little girl. Those big eyes. She’s just breath taking. Its so amazing to see these babies grow up.
    I think of your family often and hope that the good doctors will find a combination that works for Maddie. I can’t imagine how tired you are, and hope that you are able to get a break even with Brandon leaving.
    I wish I lived closer.
    Much love to you,
    Sarah

  3. Oh Liz, your little baby has grown up and is so beautiful. All I can offer is a prayer and a hope and a wish for better days.

  4. Liz, Branden and Maddie:
    You are all such an inspiration for the positive attitudes and constant ability to make the best of every day.

    Jay is leaving as well in next several weeks but look forward to living closer again soon. Let me know if I can help with anything…anytime!

    Cyndi

  5. I know I say this every time I comment on your blog, but those drops are the worst. They may not be as cognitively debilitating as the spasms, but unless someone has dealt with them, there is no way to describe how life altering they truly are. They interfere with everything -including development. I always wonder how Austin would be doing developmentally if it weren’t for the drops. His freedom is so restricted because of them that he cannot roam and explore freely. I know that has an impact on his developement. Even his toys are specially chosen to minimize risk of injury. I really don’t know why I feel the need to always identify with you on this. Maybe because I’m living the same nightmare and my heart breaks for you and Maddie knowing you are living it too. I definitely agree with you about not knowing how to let someone else take on the responibility of protecting her from the seizures. I can’t leave (or blink it seems like) during Austin’s therapy sessions either. What has become second nature for me seems oblivious to others not living this. I even have an instinct to intervene when I see other kids sitting at tables in fear they’ll smack their face from a seizure. It’s tough.

    I think of you and Maddie often, and I’m hoping better seizure control is on the horizon.

  6. There really is very little need to apologize for updating or not updating. Some people are prone to blogging a lot, some are not, you gotta be who you gotta be. No apologies are necessary for being who you are.

    As for the rest? Well…you know how I feel about that. I hate it. More than anything.

    I will say this, and it’s funny, because Jen reminds me of this all the time because of how down I can get. Maddie, in almost all the pictures I see, looks so HAPPY. It’s charming beyond measure. She (Jen) tries to remind me to see that in Bennett a lot, because she knows I don’t.

    You never have that problem with Maddie. You see it so easily, it’s a great quality to have, that ability to focus on the positive and remain focused on staying upbeat. It’s good for her, good for you, for Brandon, for the whole family.

    My thoughts are always never far from the three of you. Brandon’s departure? Is he going overseas again? That BLOWS if that’s the case. God holy jaysus I can’t stand war.

  7. Liz
    I just saw your mom Saturday night and asked about Maddie. I am so sorry she is still having the seizures and side effects from increasing the Banzel. I pray her precious little body will adjust to the increase and things will get better for her.

    Congratulations to Brandon for receiving the Bronze Star Medal for valor. I know you are very proud of him. I am too and I appreciate his service to protect our freedom. I am sorry to hear that he will soon be deployed again. I continue to admire you for your positive outlook on everything; and I pray that God will continue to give you the strength you need each day.

    Thanks for posting the photos. She is as beautiful as ever and always seems happy. I love her new haircut.
    Blessing to all of you,
    Loretta

  8. Liz, she is sooo cute!! I put a link to your blog on my Facebook page so even more people can see what a terrific family you are and how brave and beautiful Maddie is. All God’s blessings to you. Elaine

  9. Hello there! I am new to your blog. I found you quite by accident, (or by divine providence!) My name is Bridget and I’m a Christian and I’ll put you guys on my prayer list. Maddie is PRECIOUS!!!!!! I have two not so little girls of my own, that keep me busy too! The funny thing is that your last name is the same as my maiden name! We could be related! Do you know a Michael Gorman (my dad) ?

  10. I have followed Maddie’s journey for years, she is so beautiful. My heart breaks for you and what you have to go through daily. I check often for an update and pray for a miracle for Little Maddie often.

  11. Liz she is beautiful and looks a lot like her Mommy! I pray they can find a way to get those seizures under control and give her back that carefree life she was enjoying so much. I hope you have an awesome Mothers Day!
    Prayers always!
    Marcy

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s