Julia May

She is here! I will be updating with her birth story over at the pregnancy journal but for now here are the details:

Julia May

07/22/04

9:22pm

9lbs 2 oz

21 1/2 in

All We Need Now Is...

Thankfully, we have had no other issues with Emily wetting at night so I guess it was just a "thing."

I couldn't sleep at all last night...I was basically awake until 2:30, then asleep of and on until about 4:30. From 4:30 until the kids woke at 7:30, I may have slept for 45 minutes total.

I was of course hoping that I was in labor but I just felt crampy and uncomfortable...nothing else unfortunately.

I spent the day yesterday organizing the new desk that Ryun assembled the day before and finally went through all of my scrapbooking supplies and got them in somewhat of an order.

Ryun also assembled the crib which we had to have repaired(a leg was broken) and I put the bedding on. As Emily so aptly put it, "All we need now is the baby."

Are you listening Julia? It's time to come out!!!

MRI Results

AHHHHHHHHHHHH!!!!!!! Yes, that was me yelling.

So, I finally spoke with a neurologist yesterday about Emily(not even her neurologist, just one in the same department) and got the "final" resluts of her MRI.

As it turns out, she does not have a neuron migration disorder, which is of course nice to hear.

The only bad thing? She has something that they can not describe and have no idea what it is. Great.

In a nutshell, she has and I quote, "an abnormal signal in the white matter of her brain."

What is the white matter?

Here is a quick definition from www.medterms.com.

"White matter: The part of the brain that contains myelinated nerve fibers. The white matter is white because it is the color of myelin, the insulation covering the nerve fibers. The white matter is as opposed to the gray matter (the cortex of the brain which contains nerve cell bodies). "

They do not have an official name for whatever it is she has, nor do they know whether or not it could be genetic, if she could develop any other conditions as a result, if her seizures were as a result of this abnormality, or if she could outgrow the seizures.

I honestly think I liked the other diagnosis better.

At least it was more definitive and from my reading about neuron migration, I was able to determine how lucky she was to only have seizures as compared to the many other more serious problems she could have had as a result. I had even discovered that it could be genetic and while this was not comforting in anyway, at least I knew something.

As it stands now, we know nothing...nothing expcet that there is something abnormal. That just isn't good enough for me, not that I have any choice.

She will have to have another MRI in 6 months...maybe then we can get some answers.

MRI

So...I still have not heard back from the neurologist regarding the final results of Emily's MRI. I am kind of getting a litle frustrated...mainly because I have a few questions that I want/need answered.

1. If in fact the MRI results are confirmed and she does have a neuron migration disorder, is it something that can be genetic(this had no effect on Emily until she was 7 so what does that mean about Katherine and Julia?)?

2. Could this affect her in any other adverse ways in the future? Is there still a chance that she could outgrow the seizures?

3. Are her blood levels ok? Is it fine to be in the normal to high range?

I am assuming if the radiologist had found anything out more serious or whatever then the neuron migration disorder, we would have heard right away, at least that is what I am hoping.

I called yesterday but never heard back(he didn't come in until 3:00pm though so I figure maybe by the time he was done, it may have been too late to call). This morning when I called, his secretary gave me his pager number so I can contact him directly. If I don't hear from him by noon, I will just do that.

Emily Take 3

Emily did a fabulous job during her MRI. I couldn't go in due to the fact that I am pregnant but my mother went in with her and said she was perfect. She even fell asleep for the first half. They had to wake her to give her a shot in the arm (a dye for contrast) but she went right back in and stayed still.

We waited in the neurology department for a preliminary reading which we got about an hour or so after she was done.

Thankfully, there was nothing major wrong(tumor, blood clot etc.) however, the reading was abnormal.

This is a little hard to explain(the neurologist drew a picture) so bear with me.

Before a person is born, usually during the second trimester of pregnancy, the neurons begin their migration from the water filled cavities where the origniate, to their final spot somewhere in the cortex of the brain. The cortex is the part of the brain that processes...everything. Learning, memory, perception etc. A normal MRI shows that these neurons have migrated completely. An abnormal one, such is the case with Emily's shows that some of the neurons did not make the journey and are just floating around in limbo.

In some cases this can cause severe impairments, such as mental retardation, poor muscle tone, and failure to thrive and grow.

In Emily's case(thank God) the only apparent result is her seizure disorder. Although we are obviously grateful that this is the only problem, it most likely means that she will not "outgrow" this and will have to live with it throughout her life. That in itself brings on a whole new set of concerns for the future(driving, having children etc) but is something we are choosing not to think about this early on.

The MRI reading was only preliminary and we will be getting the final results within the next few days.

I am having a hard time digesting the fact that there is something actually wrong with my child's brain. Maybe different is a better word. It just seems so impossible. She is so advanced in so many ways that it makes me wonder, if the neurons had actually made their way over to where they belong, would she have been a genius? This may seem like a strange question to ponder but she is for all intents and purposes wise beyond her years, despite the disorder.

Obviously, given all of the problems that could result from this disorder, we are so lucky that seizures are the only problem she has.

Emily Take 2

Unfortunately, the seizure turned out not to be a "freak one-time thing." She has officially been diagnosed as having a seizure disorder(epilepsy) by a neurologist at Children's Hospital in Boston.

It has been a very emotional and trying few days so please forgive me if I ramble a bit.

On Tuesday morning, she again awoke in the throws of another seizure. This one was about the same as the last one...the only difference being that she came back out of it a little quicker. Last time it took her a good half of an hour to come back, this time she was back within a minute. The ambulance came, took us back to Morton and conferred with her pediatrician. The decision was made for her to be transferred to Children's Hospital in Boston for further evaluation.

We went by ambulance, with my mother following. Because she was ok, I told Ryun not to meet us and just to hang in Boston (where he was working) and that I would call him when we had information.

We got to Children's where they performed a full battery of neurological and strength testing, all of which she passed with flying colors, and, typical Emily style, a little humor.

After a bit of a wait, a neuro consult came down, reviewed the information, and upon discussing this with his attending, decided that she could come home and scheduled an EEG for Friday. At this point, they still felt that the seizures could be related to the pneumonia and ear infection. He did however say, that if it happened again, we should call him and most likely, go right back in.

The next morning, it happened again. I called, we came back and he decided that she should spend the night and be hooked up to the EEG.

She was such a good girl. For an active little girl to basically spend three days in a hospital bed without complaint in my opinion shows what a trooper she really is...never mind all of the bloodwork and tests they had to perform.

At about 6:30 or so that night, they connected the electrodes to her head and as soon as she was admitted to her own room, they connected the machine. She had a bit of trouble getting to sleep(imagine having wires all over your head and chest...they were monitoring her heartrate as well) but she finally fell asleep about 9:00 or so.

My mother and I basically did not sleep at all...between being nervous and uncomfortable, it was next to impossible.

She woke a few times during the night when the nurses came in to check on her, but other than that it was an uneventful night, which was good.

At about 11:00 in the morning, the EEG tech came in and disconnected the machine...leaving the leads on her though in case they needed to do get any more readings.

It took about 3 hours or so, but the neurologist finally came back and said that she did in fact have a seizure disorder, affecting mostly the right side or her brain but that he saw various other places as well.

Despite the diagnosis, I did feel some relief in the knowledge that we did have a reason for the past few days.

She has been prescribed Depakote, which the doctor fetl was the most appropriate medicine to treat her particular type of condition. He also prescribed her an valium that is injected if she were to have a seizure that lasted for longer than five minutes or had one right on top of the other.

She has to have her blood drawn in one week to test her levels, and had an MRI scheduled for July 7, just to make sure that there is no "other" cause for her siezures. Right now, the neurologist seems to think that she is one of the many people who just has this disorder, with no identifiable reason.

After these initial few months(and once we are sure that her medicine works etc.) she will have to have her blood drawn every 6 months to make sure that her levels are ok and that the medicine is still the right one for her condition.

I have been reading as much as I can about this and am trying to keep informed about all the different aspects...how it will affect her everyday life etc.

It's all a bit overwhelming but both Ryun and I feel we need/want to do as much as we can to help her lead as normal a life as possible. Most people with a seizure disorder have no problem doing anything really so it is our hope that she will be the same.

Emily

I don't really know where to start with this entry. I guess from the "beginning" would be the most appropriate huh?

On Sunday afternoon/evening, Ryun cleared Emily's room and painted it to match their new furniture/beddding sets that we will be setting up soon. Because the paint was still wet( and the fumes still strong) we set Emily's bed up in Katherine's room for her to sleep in there. They were so excited to have a "slumber party"...it was so cute.

Anyway, twice during the night Emily came down to our room...once to go to the bathroom(there is one in the hallway upstairs I think she just wanted to come down and say hi) and once just because. When she asked if she could stay down with us, the first time I said, "No, go ahead back upstairs...Katherine might be sad if she wakes up and doesn't see you there for your slumber party." She was fine with that and went back up. A few hours later( around 5:00 am or so) she came back and asked if she could stay again. I said the same thing about Katherine being sad but at the end I said, "It's your choice though...you can stay if you want to."

Thank God she did.

Just a quick side note before I continue...Every night, one or sometimes both of them end up down stairs with us. I don't really mind all that much but I do try to convince them to stay in their own rooms...just because it seems like "the right thing to do."

I will never, ever, ever, ever again complain or make any comments about where they decide to spend the night(our room or theirs I mean).

When Emily came down the last time, Ryun was just getting up to leave for work. She jumped in to his spot in bed and started asking me all kinds of questions...What time is it? How many minutes until we get up? Do I start swimming lessons today? I answered her and finally said, "Ok Em, it is time to go to sleep."

At about 8:00(Katherine had come down about 1/2 hour earlier when she woke up) she and I were lying down in bed talking quietly when Emily made this noise that kind of sounded like she was clearing her throat, but sort of sounded like she was gurgling water too...hard to explain really. Katherine asked me what that noise was and I said, "that was just Em."

Seconds later, my bed started to shake. I immediately jumped out of bed and went to Emily was was shaking rather violently and, for all intents and purposes, unconcious. Her eyes were open but mostly rolling back in to her head and she was drooling. I rolled her onto her side thinking she might be going to vomit. I called her name(yelled it actually) a couple of times with no response and immediately called 911. I kept trying to call Emily and when the shaking finally subsided(seemed like forever but it really only lasted for maybe 1 to 2 minutes) she was just staring in to nothing. Her eyes were on me but it was like she was looking right through me. I kept calling her, saying her name asking who I was, and at the same time running around my bedroom getting myself and Katherine dressed, calling my mother to come take Katherine for me, and calling Ryun to tell him what was going on and to meet us at the hospital. At one point, just before the ambulance arrived, I managed to get her to mumble "mama" but it was almost indecernable and if I hadn't been asking her to say it, I wouldn't have even known what she was trying to convey.

The medic came in and by this time, she was starting to come back around a little, but still not quite back to reality. He gave her a quick once over in the bedroom(checking her pupils which were completely blown, having her stick her tongue out and checking to see if she wet herself, which she had not). The EMT came in with a stretcher and took her outside.

When we got outside, the police officer that came with them asked me a few questions(her name date of birth etc) and when I turned back around to the stretcher, Emily was fully awake and crying. I don't think I have ever seen her so scared in my life...and I can't explain in words how that made me feel. I of course went right over to her and told her she was okay and that we were going to go (together) in the ambulance to the doctor. My neighbor took Katherine for me until my mother arrived(about five minutes later or so). While in the ambulance, before we left, the medic started an iv(just in case she had another episode on the way...with the iv in place they could medicate her immediately). She was still pretty upset but I kept rubbing her head and telling her she was ok and that "Mama was right here and not going to go anywhere."

She started to calm down about 5 minutes into the ride and was definitely coming back to reality.

After she was settled and the iv was all set, the medic asked me a few questions(name, birthday, insurance etc) and she was trying to answer every question. I knew for sure when she started talking she was back to being my Emily.

And I was never, ever so thankful to God in my entire life.

When we got to the ER, they drew blood, took x-rays, gave her a CT, and a quick once over to see if she had any obvious signs of illness(rash, bug bite etc). When checking her ears, the doctor was beyond shocked that she had not been complaining of ear pain. In a nutshell, her ear had just about the worst infection the doctor had ever seen. She had a slight fever.


The bloodwork and CT came back fine but her chest X-ray showed a small case of pneumonia. She had been coughing for a few days with no other cold symptoms at all...not even a runny nose so the pneumonia diagnosis was rather shocking as well.

Because they still could not identify any real cause for her having a seizure(which is what her shaking/drooling/unconciousness turned out to be) they wanted to consult with her pediatrician. He wasn't on, so they talked to another pediatrician in the practice, who recommended that she go home, be seen in the office tomorrow(which is now today) and at that time be scheduled for an outpatient EEG.

Before they had consulted with him, they started her on an iv with a medicine called "rocephin" to help clear up the ear infection/pneumonia). About ten minutes after they started it, Emily started to complain that she was itchy. I lifted her shirt and the poor kid had hives all over her back and chest. She was allergic to the medication. The doctor/nurse came in and gave her benedryl and a steroid to stop the reaction and it worked almost immediately. The hives were gone with in minutes. We of course had to stay around for awhile to make sure she was alright and they sent us home with a presription for a steriod and told us to give her benedryl every four hours.

We blew up the air mattress and set her up in our room to sleep.

It is now almost four o'clock in the morning and I can't sleep, despite being exhausted after our long day at the hospital. I crashed on the mattress with her and have been waking up every time she moves at all...even just the slightest movement.


I hope that her EEG comes back normal and that the seizure was just a "freak, one-time thing" for her sake of course, and I have to say for mine as well.


I can't explain the fear that was running through my veins when I watched her go through that. She had no idea who I was. She was not responding to me at all. She was shaking so violently that my entire bed was moving.

If I never, ever have to witness that again, I can honestly say I will die a happy woman.