Saturday

We hope that those of you who can will join us for Lydia's memorial service to celebrate her life. It will be held at Calvary Evangelical Free Church in Trumbull, CT in the family life center on Saturday at 1:00pm. There will be a reception to follow.


Contributions in memory of Lydia can be made to the Kennedy Krieger Foundation via internet www.support.kennedykrieger.org/lydia or via phone at 443-923-7300. Contributions may also be made to the Lydia Thompson Memorial Fund at Christian Heritage School - 575 White Plains Road, Trumbull, CT 06611 or contact the Development Office at 203-261-6230, ext. 590.

Many people have already heard, but our sweet girl went to be with Jesus this morning.

She was peaceful and quiet and in our arms.



When we know any details, we'll pass them on to you. Thank you so much for your prayers and your love for our girl.

New Neurologist

So, you know what's awesome? New neurologists who are helpful and change medication levels.

Our new neurologist Dr. M proved to be not shy about upping Lydia's medication levels. The one med that we started her on when she made the move to Yale (when she was two weeks old), Keppra, was the one that seemed to help her most at the beginning. Since it doesn't build up in the system the same as the other medication and since there isn't really a cap on how much we can give her, she chose to increase her dose of Keppra. Lydia has been on 1.5ml and today we bumped it up to 2.0ml. Next week we'll go up to 2.5ml and the next week we'll go up to 3.0m. Ultimately, in the next three weeks, we'll be doubling her Keppra. Just so you have an idea, our old neurologist would go up by .1ml. We're going up by .5.

She's also starting Lydia on a new med that's in the Ativan family but she should only need it twice a day as it is longer lasting. We'll still have the Ativan in case she has a seizure cycle that we can't break.

We started the new med and higher level of Keppra at 8pm and so far, no seizures. We'll see how it goes.

Thanks so much for your prayers for our appointment. We're so thankful for this new doctor. Since she's in a hospital, all overnight and weekend there is always someone on call. If we have an emergency, we'll be able to be in touch with a doctor pretty quickly. She also introduced us to the nurses that we would speak to if we called in and a doctor wasn't available. It's just so comforting to know there are people there all the time if we need it.

So, all in all, a good appointment.

Then I just have a quick prayer request. We're a little worried Lydia might have some kind of pneumonia. We started hearing the crackling sound in her lungs late last week and got her on an anti-biotic just in case. Her oxygen dips little low every now and then, but not bad. Would you please pray that the anti-biotics will work quickly and that the congestion in her lungs goes down before it becomes a problem?

Thanks, people. Have I told you lately how thankful we are for you?

It's a lot.

This is Not My Home

Lydia and I had a visit from one of my good friend's from high-school, Faith.

Faith is the kind of friend who you don't see for a long time, but when you do it's like you were never apart. She is awesome. She is also an amazing photographer and took a bunch of pictures for us, which will be coming sometime in the not-too-distant future.

One of the things I love most about Faith is that she doesn't mess around when it comes to conversation. When we get together, we rarely small talk. This is a trait that I am coming to love more and more about people, as I do not really enjoy small talk. If I'm going to spend my time in conversation with you, let's TALK. That's what Faith and I do.

In between all of our discussions about the ups and downs of the past couple of years and realizing we've had some really high highs and terribly low lows, we concurred that both of us have those days when we look around at our lives and (as Faith put it) say, "This is not my home." I loved this because it put to words exactly what I've been feeling lately.

I was watching Prince Caspian the other day and in the first fifteen minutes found myself weeping like a loon at the part when the Pevensie children arrive back in Narnia. They feel a change and begin to realize that something stronger than them is pulling them to a different world. When they arrive on the beautiful beach of their beloved home in Narnia, they look at each other and the celebration begins. I was a mess because it was just one of those days when my soul wishes I could just close my eyes and open them and realize that I was home.

Don't get me wrong. I love my life. I love my husband and family and sweet girl, and all that I'm learning and know now about my Savior in heaven. But oh, some days my soul longs for it's true home.

I think about this for Lydia too. She will see her true home long before I will. As much as it hurts to think about losing her and as much as I wish she could stay in this home for longer, the part of my soul that longs for heaven longs for it for her too.

This is not our home. Thanks for that reminder, Faith.

8 Months

Dear Lydia,

You turn eight months old today.

I think only you understand how difficult it is for me to write this letter. You’re the only one who has been with me for almost every sad, helpless moment of this past month. This is probably the hardest letter so far. I’m having such a difficult time celebrating all of the sweet little moments with you like I used to. But I still try. I know that every moment I get to hold you in my arms is a gift, even if it sometimes is I gift I have to grapple with.

God has still been very good to me and given me such precious moments with you. I know, practically, that you can’t control when you seize and that no amount of rocking and loving from me is going to make you stop. But, there have been moments when you are screaming through a seizure and when I come and pick you up and rock you gently as I sing you our new song, you quiet down and fall back asleep. He knows I need those moments because for every one, there are ten awful ones that I can’t help.

You don’t wake up much now. The only time I get to see your beautiful eyes is when you are having a seizure. Every now and then, you’ll wake up for a few seconds. I’m not sure if you can see me anymore. It’s difficult some days to believe that you hear or understand anything, but deep down I believe your soul is still aware of what is going on around you. I pray every day that you feel how much I love you as I hold you close and whisper it over and over into your ear.

Whether you understand or not, we’re still trying to take you places and do new things with you. This month we’ve planted seeds, baked cookies, gone to the zoo and celebrated Easter! All things made better because they were done with you.

For all the bad, hard things there are still so many beautiful things. And until you aren’t here anymore, I will keep trying to show you things and keep making memories that I will hold in my heart until the end of my days.

I love you, sweet girl. Always will.

Mama

(My friend Amber made Lydia a tutu! Here are some pictures from our photo shoot! I was calling her "Tiny Dancer" and singing Elton John).

Baby ballerina feet.

Showing off her mad plié skills.

Please note the chubby belly situation we have going on here.

Yeah...You know...

This has become my response to people when they ask how we're doing.

Things here are not awesome. We're pretty much living from dose to dose of Ativan. Sometimes it works. Sometimes she'll have seizures through the several hours until her next dose.

I envy moms who have kids who cry and you can fix it. Lydia cries and cries and there's nothing I can do. The worst part is that it's not even a big cry. It's a heart-breakingly pathetic wail. And there's nothing I can do to make it stop. Today I just held her close and cried and cried with her and apologized because I can't make it better.

She doesn't wake up anymore. The only time she opens her eyes is when she's having a seizure.

We have an appointment at CT Children's hospital, but it's not for over a week. I'm so thankful they could get us in - normally it takes months - but I just wish it were sooner.

I'd Like to Take This Moment to Say...

THANK YOU to two of my friends, both coincidentally named Amber.

My friend since high-school Amber is the woman responsible for making my blog look so lovely and for keeping the pictures in the header updated. I am mostly technologically impaired. I can type. I can post. That's all I've got. Creating things electronically is not something I am capable of. I send her pictures and she makes everything look beautiful.

Then, my friend since four years ago Amber has made the lovely "Praying for Lydia Eileen" button you see on the side-bar of our page. If you have a blog and are so inclined, you can add it to your blog so people can link over to read about our girl from your page. She just updated it with a new picture, so if you have the old button, you can replace it with this one!

Thank you, Ambers for doing all of the awesome things I cannot! Love you both!