Detroit day 2

We are waiting, waiting, waiting today. After a long morning, Ella, as far as we know, has finished with her PET scan and should be somewhere in the process of her MRI. Soon she will go to recovery and begin waking up from anesthesia. Where we can then be reunited with her.

I learned today that because I am pregnant, I am not able to be near Ella for the 12 hour period following the injection of the radioactive glucose used during the PET scan. Which is more than a little disappointing. I can sneak a hug or kiss in briefly and infrequently and that is all until late tonight (essentially tomorrow morning because of her bedtime). It means Chris will be on diaper and bedtime duty for the rest of the day, so I'm even more glad that he made the trip with us.

The overnight EEG finished around 8 this morning without us being able to catch any noticeable seizures. It was a long, fitful night for Ella wherein she slept only 6 of her usual 12 hours. I slept for a few hours at the beginning of the night, while Chris watched her and then I stayed up from about 3 a.m. on while Chris dozed. So, really none of us got much sleep.

The EEG tech came this morning and had to reattach many leads that had nearly come loose in the night, while also needing to rewrap Ella's head entirely. This is because the PET scan includes a simple EEG as well. It's really interesting to hear the explanation of the science involved in what they are testing for. I'll spare you the geeky nurse stuff, but I am really hopeful that lots of useful information will be obtained.

After recovery, we'll drive back to my sister's house in Ann Arbor and take it nice and easy tonight into tomorrow. We are spending some time with my dad's brother & his family tomorrow night, and then we will head back to Detroit on Thursday to meet with the doctor and review Ella's results. 

We got to see my cousin on my mom's side last night, too, which was a nice treat to break up the monotony of sitting around in a hospital room for hours on end. So good to see you, Kelsey!

♦

To Detroit

We are in Detroit this week with Ella, seeing a child neurosurgeon who is a renowned expert on epilepsy and infantile spasms. We've known about him from the beginning of Ella's diagnosis and have exchanged emails with him in the past. We always thought we might head this way if it became clear that seizures were persistent even through many trials of medication. While some have had longer med trial periods and have "failed" more meds than Ella has before making this trip, we felt it was time to see if there is anything else we could be doing for her. This includes surgery, which would not happen on this trip nor would we make such a decision without ample analysis of the pros and cons. At the very least, we want to seek more information about why these seizures are occurring, and hope to gain insight about where we go from here. We don't want to get years down the road, still battling seizures, and look back and wonder if there was more or something different we could have done.



Today, Ella is hooked up to an EEG and video monitoring. She has been so good to lay in bed most of the day, which is not her normal m.o., and this was by far the least traumatizing hook-up experience we've had, thanks to the tender care from a gentle giant named Lomar. Chris & I are supposed to take turns watching her throughout the night and record any suspected events. We don't typically pray for seizures, but today we have prayed for that very thing. The more information we have about what happens in her brain during a seizure, the better chance we have of finding the proper treatment for her. (Of course realizing that seizure medications lose effectiveness over time and that we may not find the end all be all treatment, we hope to find at least something that will stop the seizures in the short term.)

Tomorrow, Ella will be sedated for an MRI and PET scan. The MRI machine here has a higher resolution than the one in Little Rock, and she's never had a PET scan before. During the PET scan, she will continue on EEG so that the information they obtain can be overlapped to give simultaneous comparison of brain function & activity.

On Thursday, we will see Dr. C who will do a full exam and will go over the results of all the tests with us. We are looking forward to finally meeting him in person.

I will post updates when we know more, providing that my phone will stay charged, as that is what I am using to tap out these entries. 

We miss our boys and send tons of hugs and kisses back home.

♦

Girls

There was a time not too long ago when I was terribly outnumbered in my own house. My husband, two sons, and heck even a boy dog were my posse. Then we had Ella, and a bit of pink and purple and wisps of curls entered my male-dominated life. I didn't even know what I was missing, but our family felt all the more balanced and complete with our sweet girl in it.  We've added a female dog for good measure since that time as well.

Content with the thought of either a boy or girl, I entered the ultrasound room last week with great anticipation. What a joy to learn that we would be having another girl! The boys were there with us and learned the news at the same time. Though they were a little distracting and grew tired of the process, I'm really glad we were able to bring them.

While we are on the subject of girls, our daughter gave us quite a scare last night. Ella developed a very high fever in a very short time and began seizing. I was already at work, and Chris was home alone with the kids, but in no time, Chris' mom had come over to watch the boys, my coworkers were able to take over the care of my patients, and I met Chris downstairs in the ER. We were there a really long time, both because it was very busy and because they were trying to find the source of Ella's illness. Everything came back negative so it is assumed to be viral, and today she has remained seizure and fever-free, so that's good. We'll probably go see the pediatrician tomorrow just for follow up. 

In other Ella news, I discovered tonight as I was trying to get everyone's things organized for school tomorrow a note from Ella's physical therapist recommending she be fitted for orthotics. While I'm not surprised by this, I am a little sad. Once she gets them, friends and strangers alike will immediately see her as "different," whereas up to this point she has been able to blend in pretty well. I guess I won't have to explain anymore to people why she doesn't readily answer their questions, which might be a little easier for me. I'm sure they'll assume not talking goes right along with "walking funny." I just don't want her to be treated differently. She's very smart and though she doesn't talk much, she is very good at reading people and I worry that she will notice any change. And she primarily learns by observing and mimicking others, so it'd be a shame if her opportunities to interact with people were lessened by these devices making her seem less approachable. Also, I have a feeling that Ella will not be very keen on wearing them, so it may be a battle to keep her happy in the darn things. As with everything else though, I'm sure we will adapt and make the most of it.

And now I really must be off to bed. Tomorrow is Cooper's first day of school, his last year before kindergarten! Jackson will start 1st grade on Wednesday. Where did the summer go?

♦