Emma’s Grace

For those of you who don’t know about my other blog, there’s a new post up.  The topic….today is my 10 year anniversary.  For those of you interested, there’s a picture of Jon & I on our wedding day.

While Emma was having that really big seizure, I managed to take a short video of it with my phone.  It’s only 30 seconds long and the quality isn’t very good, but I thought I’d post it.  This is my first YouTube post.  I’m hoping it works.

We are home at last.  Well, as of a couple of hours ago, anyway.

Emma was released with a new script for Topamax for her increased dosage and a script for a diastat suppository to end her seizures that last longer than 4-5 minutes, in case we need it.

Emma is asleep right now and I’m exhausted as well.

I am off to bed.  A quiet bed.  Without a roommate who turns on a movie for their 10 month old at 11pm.  *sigh*

Good night!

So yesterday, by 3pm, we had been transfered out of the PICU and into a regular bed.

Emma’s doing well.  She’s had no seizures since entering the PICU.  She was on a dilantin drip, which she has been taken off of now.

The neuros prescribed a regular dosage of Klonopin for her.  They did this because they weren’t sure if the Klonopin I had given her Saturday morning was a regular thing for her or an as needed drug.  I’ve cleared that up and she won’t be getting any more Klonopin.

Her dosage of Topamax has been increased for the evening dosage.  That will start tonite.

Emma’s fever returned briefly yesterday afternoon.  After a dose of Tylenol it went away and hasn’t been back since.

She’s still very sleepy.  When she does wake up, she isn’t really fully awake and hasn’t opened her eyes very much.  Once all of the heavy drugs are out of her, I’m hoping that she can wake up a little more.

If the cultures that Botsford took while we were at the ER come back clean, then it is likely we’ll get to go home this afternoon/evening.

It’ll be nice to be at home and have a sleepy, cuddly baby.  She hasn’t really been comfortable when I’ve held her so she’s been mostly in the crib.

I’ll try and post when I know if we’re getting out of here.

…don’t forget to cry
- Matthew’s version of the song Had a Bad Day by Daniel Powter

Emma’s back in the hospital.  At the moment, she’s in the Pediatric ICU (PICU).

We woke up this morning after sleeping too long.  Emma was in her room crying.  She was obviously hungry.

I nursed her and afterwards, she was starting drift off to sleep.  I still had to give her the Topamax though.  I made a tiny batch of oatmeal for her, just for the meds, and fed that to her.  She started to drift off.  Then my phone rang.  My sister is due to have her baby any minute and I was waiting for the call.  I laid Emma on a sheet on the floor and grabbed my phone.  Sure enough, Kim was having contractions.  I got off the phone with Mom and went to pick Emma up.

Her hand was twitching.  We haven’t increased her Topamax dosage in a while since she hasn’t really been gaining much weight.  So I was expecting this to come any day.  I knew we’d have to keep an eye on her and I’d probably be increasing her evening dosage.  The twitching lasted for about 30 seconds.  After it stopped, I laid her in her crib.

Ten to fifteen minutes later, I heard Emma make a noise.  It sounded like a cough, but I wanted to make sure she wasn’t crying.  I ran upstairs and she was seizing.  Hard.  Left arm and leg both shaking.  Eyes upturned to the left.  Left side of her face was twitching.

I gave her to Jon while I got the Klonopin.  I gave her a whole wafer to start.  The seizure would go down in intensity but then go back up.  I gave her another half of a wafer.  Not much was happening, but we knew the Klonopin wasn’t immediate.  We both looked at her at the same time and she was turning blue.  When seizing, it is common that fluids will gather in the throat and make them sound congested.  She sounded raspy.

Jon sat her up and she turned a normal color.  This happened another time.  And I just turned to Jon and told him to take her to Botsford right now.  I’d follow with Matthew in a little bit.  Ya see, we weren’t really dressed for the day yet.  We decided to call an ambulance.  The ride to Botsford is very short, but if she turned blue again, I wouldn’t be able to see her or take care of her while I was driving.

An ambulance and a fire truck showed up to our home very soon after I called 911.  They worked on Emma for what seemed like forever.  I’m sure the neighbors were trying to figure out what was going on.

They took us to the hospital where they worked on Emma to get her seizure under control.  By then, she had been seizing for over half an hour.  We’re not sure if it was one big seizure or if there was just no break in the clusters.

Even after the medications, she still had some small stiffening of her limbs, which were seizures.  She was also having problems breathing with the same congestion problem.  It turned out that over the course of the morning, she had developed a fever that made it to 103°.  All of this was very sudden, since she had been perfectly normal yesterday.

Soon after we arrived at the ER, the doctor called for a transport to Children’s Hospital of Michigan.  They eventually arived and I went on my 2nd ambulance ride that day.

Emma is there right now in the PICU sleeping.  Once she is awake and not having problems breathing, they will transfer her to a regular room.  I told the nurse that after large clusters of seizures, Emma would sleep for hours afterwards.  The nurse said it could be days because of the seizures and all of the medicine she’s on.

Before I left, they had put a feeding tube in her nose to give her the medication she needs and milk if they think she’s up for eating.  She’s yet to wake up, but did not like the tube going in her nose.

Welcome to our 4th trip to CHM.

Well, I had to give a great big thanks to Aunt Katy!  I don’t know what it is about her, but she has a way of getting my kids to do stuff every time we see her.

A long time ago, she worked with Matthew over an Easter weekend.  The next day we were home, he crawled.

This past Easter, we wondered what she would do with Emma.  The next weekend, Emma got her first tooth.

On the 8th, we had Emma’s first birthday party.  Aunt Katy came along.  It was the first time we have seen her since Easter.  Aunt Katy did it again.  the following weekend, Emma got another tooth.  We’ve been waiting for this tooth.  Her gums have been red and swollen for weeks.  I didn’t think it was ever going to show up.

Then Saturday morning I stuck my finger in the trap her mouth.  There was the gigantic sharp tooth that bites me every once in a while.  But there was a shorter, sharp thing in there next to it.  Sure enough, that tooth not only poked through, but was sticking way up.

Nice job Aunt Katy!!!!  Can we arrange a visit every couple of weeks?  Maybe they will all come in faster than one every 3 months.

I’d include a picture, but have you ever tried to take a picture of the inside of a squirmy baby’s mouth?

Well, it seems like it’s been forever, but it really hasn’t.  Here are the pictures the photographer took of Emma.  These are only the proof pictures.  So they aren’t big and they aren’t high-quality.  They’re just for looking at.  The photographer was amazing.  Him and his son took a huge amount of pictures.  The ones that I’ve seen look really nice.

For the this picture, he kept calling Emma’s name and she doesn’t really give the usual response of turning her head toward you and focusing on you.  So I told him that she wouldn’t really do that for him and he just said ok and worked with what he had.  This is right after we put her dress on her.  I waited as long as possible to put that dress on her.  I was afraid she’d spit up on it or something.

Here she is just before the ceremony.  I loved the hair bow and normally I can’t stand those things.  Her dress was perfect.  Thanks to Aunt Crystal for that find.  I almost didn’t have to do any work for the kids to be in the wedding.

Here is Emma being held by Grandma, standing next to one of the groomsmen.  Since Emma can’t walk herself down the aisle, Grandma carried her.  You can’t see her cute little shoes in this picture very well, but they are a very light pink with beaded flowers all over.

Here is Emma and Grandma at the reception.  I turned around and the photographer was snapping so many pictures of the two of them.  You could tell he loves taking pictures of kids.

Here is (from L to R) my sister Kim (pregnant, due in July), my Aunt Connie, the bride Crystal, my Mom, Emma being held by me.

All pictures are copyright of Brad Thrower, at bradthrower.com.  If you’re in the area and need a photographer, I would recommend him.  I don’t really know what his prices are, but he was a great with everyone and he really blended in with everyone so you didn’t realize he was taking pictures.

Well, Emma has taken her final dose of Vigabatrin. And I’m just waiting. Waiting for a seizure. Waiting for it to all start again. But so far, it hasn’t. It’s been so quiet around here. Busy, but quiet.

Emma had her first birthday. We had such a nice, sunny day. And that weekend, some of Jon’s family came over for a BBQ and a small birthday party. They won’t be able to make it to the party we had planned, so it was nice that they came. Emma got some cute toys and a really cute outfit. I really love girl clothes. I thought clothes for Matthew were cute, but I have a hard time stopping myself from buying everything I see for Emma.

This upcoming Monday is our last day of school. We have a session for July and another session in August, but we are done for the summer. It will be a nice break, but I’m going to miss all of the new things that Emma does at each class. And I know Matthew will miss his time there with all of the toys, the other kids, and snack time.

Our PT will continue during the summer. We’ll have a 2 week break soon, but we’ll keep going after that. I asked Ralph about doing water therapy with Emma. They have a pool at the PT place, so next week we’re going to try putting her in the pool. I am excited to see how it works and if she enjoys it.

We are also in the process of ordering her a compression vest. We should have it in a couple of weeks. It’s kind of like a wet suit, but it will only cover her torso. There will be wires in the back that can be removed. The wires will give her some support. We are hoping that it will make her more comfortable and a little more stable so she will be able to explore her world a little more.

So we wait. Wait and see what Emma will do next. And enjoy every minute of it!

This day has finally come. It’s been a long road, but today is your very first birthday.

It’s been an amazing year. Your quick entry into our lives. An amazing first 2 months of getting to know you and watching Matthew adore his baby sister. Noticing your funny jerky movements and strange breathing. Thinking I was a paranoid, over-reacting mom. Realizing you were having seizures. Your first hospital stay with Grandma and Papa while Daddy and I were in Vegas. EEGs, MRIs, and bloodwork. Two more hospital stays. And finally a diagnosis at Christmas. But still no reason for the IS.

That day, a lot of things changed. And while some of them weren’t so good, one of them was that we got our daughter back. With the right medication, it was like starting over. And it was beautiful.

Since then, you have been working so hard. You have made an incredible amount of progress. You will never really know how proud we are of you. Someone so small shouldn’t have such a busy week but you do the best you can and we couldn’t be happier.

The day you rolled over on your own was perfect. We had just left the neurologist office and told her that you couldn’t do it on your own. That afternoon, you proved us wrong. Twice. Both ways.

You love the koosh balls. I remember how popular koosh balls where when I was in school (long time ago). They were everywhere you looked. And this many years later, they are your favorite thing to hold on to as we try to improve your grasping skills. You are starting to grab onto things, mostly cloth, but toys are starting to come into the mix.

We are working on getting your arms stronger so you can push up more and maybe even army crawl soon. Also on our current list is sitting. You’ve mastered rolling over, sitting up on your own would be amazing! You almost do it. You’ve yet to grasp that you can use your arms to catch you as you fall over. You completely trust that I will always catch you as you tip, with a huge smile on your face.

You are an amazing part of our lives. And no matter what IS may bring us, you are our beautiful angel and we look forward to every little accomplishment and smile you share with us.

Our first weak of weaning Emma off the Vigabatrin is done.  So far, she seems to be responding well.  No seizures.  She has been a little sleepy and grumpy, but she’s a baby, with only 1 tooth.  There have got to be some more teeth in there wiggling around, which can’t feel good.  She’s also growing.  So with all of that, I’m not worried very much about a sleepy, grumpy baby.

Of course, we are hoping this continues and she stays seizure free.  But it would be very nice if any breakthrough seizures she may have due to the weaning can hold off for a week.  Emma’s birthday is Thursday and I’d like her to have a happy day.