EEG

If you are on facebook you know that Mairead had an EEG at Children's Hospital today. We are pretty sure that she had what is called a focal seizure or absence seizure the other day. No convulsions, spasms, etc, but her head and eyes drifted to one side and her eyes were just vacant. Her arms went limp and no matter what we said to her or how we jostled her to try to get her attention, it was like she "wasn't there." My mom, who you know is a nurse, witnessed it and was pretty sure of what she was seeing. I have actually seen her do this before, but always thought she was just spacing out for 15-20 seconds. Wednesday, though, she was 'gone' for probably a full minute and it was pretty obvious that something was not right. It didn't bother her and she seemed to just 'snap out of it' on her own and go back to what she was doing.

Obviously this is a concern, particularly given her history. I put in a call to her neurologist yesterday and they got us in for an EEG at CHB today. We don't have any results and won't until next week when we see her neurologist, so we are just waiting at this point.

The good news was that she was AWESOME for the EEG. I was afraid she would freak out and be so upset, and that she would have to be restrained, etc. She was incredibly patient while the nurse placed the electrodes and she was quiet and calm during the entire process. I was SO proud of her. She normally has so much anxiety about doctor's appointments that I was prepared for the worst. But she never ceases to amaze me and this was no exception.

If she is, in fact, having seizures, this is a major blow. The seizures she had as an infant were directly caused by the clot and we thought that once the clot dissipated, we would not have to worry about seizures any more. She has never been diagnosed with any kind of seizure disorder- the ones she had that one day were isolated. Now, however, we may have a whole new cause for concern. Her MRI in July did not show evidence of any clots, so that is reassuring. We just have to wait and see what her neurologist has to say.

Hopefully we are wrong and what we saw was not a seizure, but it was clearly not 'normal,' so something is up. If it was a seizure, hopefully it was not a precursor to anything more serious or a symptom of a more serious underlying cause.

Thanks to all of you who called, left messages, texted, etc. We really appreciate your support through all that goes on with us and with our kids. People have asked how we are doing... the honest answer is that I don't really know. I know that I am stressed and upset and scared for my little girl, but I can't really give in to any of that- we have three kids to take care of and we want to enjoy every second with them. On some level, I am angry that Mairead has to deal with all of this. I am scared for what her future holds and my head is spinning trying to think of what the next step is for her. We have to deal with each day as it comes and we will try to do that by playing with our kids, trying to raise them as happy and kind individuals, giving them all the love that we can, and trying to make the right decisions for them. We just hope that whatever they tell us about Mairead, we can take steps to make sure that her life is as happy and full as any other little girl's life.

We will update everyone with any information we get, though I don't know when that will be. I truly appreciate all of the individual messages people have sent and I hope to be able to respond to each of you soon. Thank you.

Curious Creatures

We were finally able to get back to our Monday morning playgroup today after not going for almost a month. Snow, freezing temperatures, holidays, and mediation have kept us away. We picked a great day to return, though, since there was a special presentation by Curious Creatures. Jack and Ben had zero interest in the animals, which was very surprising to me, but Mairead was absolutely in heaven. She LOVED it. She did so well with sitting in the circle, though I did have to hold her back since she wanted to run right up to the man demonstrating and get involved. She was awesome about waiting her turn and listening to the presentation. I was so proud of her! Of all the kids there, she was the most visibly excited. She was jumping up and down, cheering, etc. When the man presenting asked, "Do you want to see another creature?" She would yell, "Another creature? Yay! Another creature" It was SO fun to watch- I just loved it.

She has NO fear. The only thing she didn't want to touch was the tarantula (smart girl). She said it was 'prickly.' She had no problem, however, touching the giant python.

These kids are pretending to be trees to catch a flying squirrel.

The pictures are not great because I was trying to hold the camera while simultaneously holding Mairead steady AND keeping an eye on the boys. But, this is a shot of an Australian tree frog on Mairead's outstretched hand.

She loved holding the smaller snake. She said there was a 'giant snake and a little snake.'

Here, she is trying to free the skunk. She was saying, "Come out, Mommy? Skunk come out?"

The best part of the day was when she actually got to ride the tortise. It was pretty awesome to see! Only 3-4 of the kids wanted to do it, but she made it pretty clear to the man demonstrating that she would do pretty much anything so he asked her first. She was over the moon about the whole thing.

It was very cool to see her so happy and excited. It was also great to finally get out of the house!

Sisters, and the next best thing

Today is my sister, Katie's, 30th birthday! Happy birthday! In your twenties, you became an amazing wife and mother, and I know you will do more great things in your thirties. You have been a wonderful friend at every age and I am so happy that we are sisters. I hope you had a great time last night!

We all went to dinner and were lucky enough to have the world's best babysitter watch all four of the kids. Stephanie is so great with the kids and we could relax and enjoy the night out knowing that they were in good hands.

When we got home, we celebrated with a cake Steve had arranged- he went to the bakery that made their wedding cake and asked for a birthday cake with the same colors and design. Very sweet, right?

Since Mairead is not lucky enough to have a sister, we are so glad she has the next best thing- a cousin! Her big cousin, Rachel, is a lot of fun to play with and now Mairead gets to be the big cousin to Lily. Today I asked Mairead, "Is Lily your friend?" And she replied. "My little friend. Little sister." Talk about a sweet moment!

When it was time for Lily to go home, Mairead even gave her a hug and a kiss. We love that these two get to spend so much time together and we hope they have a blast growing up as the next best thing to sisters.

And now for the bragging portion of this post. Yesterday, Mairead was coloring and said, "Make a A." And then she did! Then, she just kept going and wrote out the ENTIRE alphabet. No help, no models, no prompting. Since I had only seen her write the letter E for the first time a few days ago, this was amazing! She sat there and wrote them like she had been doing it her whole life. We are SO proud of her! She started on a separate page so this picture starts with E, but she did do all 26. Pretty smart, huh?