20 Answers

1. Johns Hopkins called Friday
2. Maybe it was a seizure
3. No she should not sleep with us
4. No we do not buy a bigger bed
5. No we do not buy her a bigger bed
6. Maybe it was a seizure
7. Hopefully funding will come through for her gymnastics class
8. I'm not sure if her seizures are getting worse
9. Her medical bills will be paid a little bit each month
10. Maybe it was a seizure
11. No reason to think she will lose the skills she has
12. I will call mom frequently and visit on Sunday
13. I'm not sure what other parents in our situation do
14. Maybe it was a seizure
15. Why not sign her up for camp, she'd love it
16. Hopefully, the counselors will be well trained and well equipped
17. Fear keeps me from asking certain questions, nothing wrong with that
18. Probably was a seizure
19. I don't know if she knows she is having a seizure
20. How's Kellyanne doing?  She's doing great!


Kellyanne will be going to Johns Hopkins on Valentine's Day for an appointment with a VERY good neurologist!  We will listen to what she has to say and hopefully get her on the schedule for the Video EMU (Epilepsy Monitoring Unit) to try to get a clearer picture of what is going on.

I spoke with her regular neurologist on Friday , who is also VERY good, and she had spoken with the neuro from Hopkins.  They discussed Kellyanne and agreed it would be good for her to be seen at Hopkins.  KA's regular neurologist is excellent at calming a parents fears. She answers questions directly but is also very clear about not letting fear take over and doesn't see the point in going down roads we haven't come to yet, and in her words, "more than likely won't come to".  She is not patronizing and doesn't say things to simply placate. She is patient,  listens to and answers all questions with great sincerity.  I am so thankful for Doctors like her!

20 Questions

1. When will Johns Hopkins call me back?
2. Was that a seizure?
3. Do we let her sleep with us?
4. If we do, do we buy a bigger bed?
5. If not, do we buy her a bigger bed?
6. Was that a seizure?
7. Will funding come through for her gymnastics class?
8. Are her seizures getting worse?
9. How do we pay her medical bills?
10. Was that a seizure?
11. Will the seizures take away the skills that she has?
12. How do I visit my mom in the hospital when I don't want to be more than 20 mins away from KA?
13. What do other parents do in this situation?
14. Was that a seizure?
15. Do I sign her up for summer camp?
16. If so, will the counselors be diligent enough to keep her safe?
17. Why am I afraid to write some questions?
18. Was that a seizure?
19. Does she know she's having a seizure?
20. How do I answer the question, 'How's Kellyanne doing'?

And Then There Were Questions.......

So the Dr. called a couple of days ago and my brain is finally able to begin to make sense of what the results of the EEG are. For a couple of days it was like my head was filled with cement and nothing was moving - as much as I tried to get my thoughts going, I just couldn't.  They were stuck - in my head - unable to be communicated - causing me to seem drugged. But now some time has passed, I've talked to the Dr again, read the results myself, and scheduled an appointment at Johns Hopkins with our go-to neuro ( the one we go to when we have more questions than answers).

So when the Dr called, of course I settled in with pen and paper and was told the EEG suggested that Kellyanne was not waking up at night due to seizures, necessarily. (Our primary reason for doing the EEG)  I wrote the following words on a piece of paper: lots of discharges all the time, episodes, partial seizures, generalized seizures, frequent, right, left, both, frontal, 1-5 secs. What the heck did all that mean?????? According to the report, the Dr. clarified, she has "lots of electrical discharges from multiple parts of her brain all the time".  The seizures that we saw and noted while the EEG was taking place didn't reveal any change from what is typically happening in her brain according to the EEG,. In other words, her EEG is a mess! Like her MRI that a shows a very abnormal brain, one that doesn't match Kellyanne's abilities, the EEG shows very disturbed brain activity that doesn't match what we are seeing in Kellyanne, Thank God!  I asked the Dr. if Lennox- Gastaut Syndrome was mentioned - she said yes - not what I wanted to hear! If you want to know why, just google it!  Of course, first thing the next morning I called Hopkins, scheduled our appt and then went to pick up a copy of the EEG report. I needed it in my hands. I needed to read it, to see if it would help my understanding a bit - it really didn't,  it was like reading Greek. There is a line in the summary that I keep dwelling on ......."consistent with (but not typical of) the diagnosis of Lennox-Gastaut Syndrome". 

The Dr. called me back the next day and went over a few more things. We talked about doing a video EEG monitoring (which I will discuss with the Dr. at Hopkins). We talked about the fact that if Kellyanne is "misfiring" all the time, how is it that she is reading, and writing, and running, and interacting????......very mysterious.  She suggested "perhaps the misfirings aren't bad" There is obviously a large part of her brain that is working very well to compensate for the parts that aren't working very well.  I commented to the Dr. 'this is really bad,  isn't it?' She asked, "why"?  I said 'the results, Lennox-Gastaut, the whole thing'. She said "Kellyanne is doing VERY well, and that's not bad". So I will focus on that. Kellyanne is doing very well. I won't think about what might lie ahead for her, for us.  I will shut that door to worry and live fully in the present moment, because that's all we really have anyway.  And it's times like this I am so grateful for the gift of  faith - because my God is Big, and what I can't handle, He can.

The Waiting Game

We all play it, the waiting game. Sometimes it's easy, sometimes it's hard. The rules of the game change depending on what you are waiting on. I broke down this morning and called the Neurologist to see if the results of Kellyanne's EEG were in. As soon as I said 'Hi, this is Beth Hagan, Kellyannes's mom', Judy, the wonderful receptionist said in her beautiful accent, "Oh, hello Mrs. Hagan, we are still waiting for the results of the EEG".  She knows I'm waiting, she knew why I was calling. I like that. I LOVE that they "get" a parent's worry. I LOVE knowing that as soon as the Dr. gets and reads the report, she will call me - day or night. I LOVE Doctors that don't put reports under a pile and call when it resurfaces. So, I will continue to wait. I will continue to carry my cell phone with me everywhere I go. I will continue to jump a bit, every time it rings. I will fill my time doing mundane tasks, simply trying to distract myself from the waiting - flitting is what I call it.  Some people are better waiters than others. I'm not one of them.

4 Friends

4 friends went to the beach this past weekend.  Not just any 4 Friends, 4 very close friends who have known each other for what's going on 25 years now!  This friend was privileged to be among them. This group of friends is unique in that they can literally not see each other for a year, but pick up like it was yesterday when they last were together. There are no walls, no facades, just honest transparency.  They have nothing to hide from one another. They tell all, good and bad, happy and sad, and usually identify in some way, shape or form to each others highs and lows of the year. One friend decided that after 8 years, it was time to start documenting their annual weekend - so the journal "4 Friends" came into being, thanks for the title, my friend.

They are all married and they all have children. They all graduated from the same college with hopes and dreams - some met, some unmet. They continue to share with each other their hopes and dreams for the future. They share stories about their aging parents, their growing children and their loving spouses.  One friend thinks she  can speak for the group when she says they don't feel much older than they did on the day they graduated (well maybe a bit ). One friend has a son who is now in college and living what they lived not too long ago.  But, oh how the times have changed. Cell phones, computers, i pads, texting, tweeting, blogging............But the 4 friends haven't changed. They've grown up and matured and rearranged their priorities, but underneath it all, they are who they were almost 25 years ago - and that's not such a bad thing.

Untethered

So, yesterday my friend came over and she entertained Kellyanne while I soaked de-gluing juice onto a cotton ball and rubbed it on the gauze over the electrodes to remove them.  KA was VERY good and the process was easy.  The bath on the other hand was a bit more challenging. Getting that gunky glue stuff out of her hair was no easy task.  After multiple washings and brushing, we decided that was as good as we were going to get at that time. After getting ready for the day, it was still early enough for her to go to school.  She was free from her box, unfortunately not free from the residual white glue stuff throughout her hair.  But, being Kellyanne, she did not know and did not care. KA is not tethered to the world in the way that most people are. She doesn't realize that she is different and goes through life not caring what other people think. So the white specks in her hair were of no concern to her.  Most of the time, this is a very beautiful thing. She doesn't worry about herself in the way we do. The upside of this is she lives her life in a totally carefree way. The downside is she will always need someone to keep her safely tethered to the reality around her.

In a couple of hours, I am going to untether myself from the worry that I have regarding the test results.  I am going on my annual beach trip with college friends for the weekend. I am looking forward to it. I am also going to untether myself from the guilt of leaving Michael and the kids with their crazy schedules as well as not seeing young Michael off as he leaves for Alabama for a week of volunteer work (who am I kidding? I wouldn't get up at 5:00am anyway). People may say "you deserve to get away" - but really, I don't deserve anything!  It is a blessing that I have these dear friends and this annual tradition.  And more so, a husband who genuinely wants me to go and have a good time. Who knows? Maybe they like it when I'm gone.......... I won't go there!

I'm looking at the clock.  It's 8:00.  KA's bus comes in 45 minutes.  Do I wake her and risk a seizure? Or do I let her sleep and be late for school?  It sounds like a no brainer, but these are the kinds of questions that make me dizzy day after day.

I hope I wake up tomorrow morning untethered from the dizziness : )

Connections

Poor Eva. The EEG tech who walked into work today after a long holiday weekend and had NO IDEA what she was in for at 11:00 am. Sure, when she saw Kellyanne and her beautiful smile and gentle demeanor, she may have thought, just another day at the office. Well, that's where it ended. Eva did a great job hooking 24 electrodes to KA's head - a 2 hour process, whereby Kellyanne kicked and screamed and cried the whole time, well almost the whole time.  Luckily, Michael and I are pretty tough and our philosophy with anything, especially medical procedures, is 'do whatever you need to do to get the job done'!  Don't get me wrong, we aren't heartless.  We told her we loved her and kissed her and hugged her and told her she was doing  great, even though she was being terribly rotten : )  But she really was a champ! Who would honestly want to have 24 red x's marked  and then 24 electrodes gooped and then glued and then air dried on their head? And then to top it off, get wrapped up like a mummy with gauze all over your head and under your chin and ears sticking out and wires wrapped in some sock like contraption as long as Rapunzel's hair and then have those same wires connected to a recorder box and placed in a black tote bag that has to be carried close to you so you don't de-connect!

It was quite a sight, KA wrapped in a blanket, strait-jacket style, sitting on Michael's lap with me sitting on Michael's knees facing him and holding Kellyanne's head still while she cried big juicy tears and drooled all over me, so Eva could do her job. Michael admitted to initially thinking we weren't going to get it done today. I KNEW we would. There was no way we were leaving there without the whole contraption on, up and running. Now it just needs to stay on for 2 days and 2 nights and then we are home free.  I then get the priveledge and honor of de-electroding her on Thursday morning. Sound like fun? If you think so, come on by for the party.

I know we are not the first people to have an ambulatory EEG done on their child. And I thank God everyday that Kellyanne is healthy. I pray for those parents who have sick children, really sick children. KA presents challenges for us, but there are so many other people who have it so much worse. I will try to never lose that perspective. I will try to never stop praying for those children and their parents. It's funny as I write this and I think again, no one is really spared.  Everyone has something that presents a challenge in their lives.  I'm just grateful that our challenge is our sweet Kellyanne. What an opportunity for personal growth - and who couldn't use that? (Honestly, I could use a lot lately......if only I had time)

So as Kellyanne's brainwaves are connected by electrodes to a little recorder box I will try to stay connected to the reality that life's not so bad!

The Dance

So it's New Year's Eve and our family is scattered. Eilis is at a friends house, Michael, Erin and Michael are at his sisters party (where I just came from) and Kellyanne is in bed. It's our New Year's Eve Dance. I go to the party for the first part, while Michael gets KA to bed and then I come home and Michael goes for the second part. The party is great. Catching up with people I haven't seen in a long time. But, we never ring in the New Year together. We talked about this and how much we don't like it, but it's just another reality of life with Kellyanne.She would have loved the party. The band would have had her on her feet dancing up a storm. But it's just too late for her, so we do what we do. And truth be told, I'm perfectly fine right now, cozy in my pajamas.

We did have a great time last night/this morning at our friend's house at the first ever New Year's Eve Eve Party - It was great. A nice one night get away with people who are very dear to us, just a close group of friends spending time, eating, talking, playing games, kids and grown ups alike.  It's a dance the whole family could participate in.

So, Happy New Year to all! Wishing you peace and prosperity and love for 2012!

Going to watch the ball drop and wait for the firecrackers to wake Kellyanne up : )

Okay 2 final thoughts having just watched the ball drop.....
1) Dick Clark? Really?

2) You couldn't PAY me enough $$ to be in New York on New Year's Eve