Time

Do you ever have a sense that time stands still while simultaneously moving full speed ahead?  It's a weird sensation I feel often.

I can't believe it has been almost a month since we were at Johns Hopkins Hospital. Hospital time is strange - for anyone who has spent time in a hospital for any reason, you probably get what I mean. Time stands still , yet it dissipates before your eyes.  Our big highlight each day at the hospital was Rounds, when the Drs would come in for 10 minutes around 11 am and tell me of the findings over the past 24 hours.  Then we waited until the next day for the same Drs making the same rounds at the same time.  KA did GREAT at the hospital. We spent lots of time reading, painting, playing, watching movies and visiting with big brother Michael (who was home on Spring Break) and others.
Per my usual MO I needed time to process what we got from that stay.  Kellyanne continues to be a medical mystery.  Let's just say that her meds are working. She has an incredibly abnormal eeg, but doesn't present as such, much like her mri.....for both of these things we are extremely grateful!  We'd rather her present atypically in both of these cases.

Our house has been a strange mix of dynamics over the past couple of weeks.  Erin was away for 3 days at a Student Government Convention so it was just Eilis and Kellyanne.  Eilis went to Mexico for a Mission Trip so for a couple of days it was just Erin and Kellyanne. Michael came home for 5 days over Easter, for 3 of those days it was Michael, Erin and Kellyanne.  And then FINALLY on Sunday and Monday we had all 4 kids at the same time under one roof. It was great! Time was moving forward, but I was stuck in this strange place of asking myself, who is where and when do they leave and/or return? 

Kellyanne has very little sense of time.  She's getting better at understanding it but she literally goes moment to moment.  There is such freedom in that, I think.  No sense of urgency or needing to be somewhere or do something at any particular time.  Yes, not an ideal way to live as an adult, but it sure seems enticing.  Kind of like vacation time....

So, as I look at the clock and realize one needs to go to practice and one needs to be picked up from practice, I must succumb to time and quit my rambling, find my keys and put Kellyanne in the car to do the necessary tasks at hand : )

A Get Away to Hotel Hopkins

So tomorrow is the big day.  We check into the Johns Hopkins Epilepsy Monitoring Unit at 11:00 am and the process begins.  We watched a silly little video that explained what to expect.....yeah, yeah, yeah......but where can I keep my cokes cold????? Luckily I do get to shower as we have a private room and bath.  I really don't know what to expect. I have 3 bags packed with toys, crafts, books, movies, snacks, etc.  As far as clothing it's all about comfort for me - sweats and t-shirts.  Kellyanne has to wear a shirt with a zipper or buttons - and she will look like a little hobo with mismatched tops and pj bottoms - I can't believe I'm concerned about her fashion! 

It's weird to be leaving everything at home behind for a couple of days.  This is a busy time with the girls both playing Lacrosse and their many other activities.  Luckily Michael Jr is home for Spring Break and can help with  the transports and to come visit me and Kellyanne.  Michael Sr. is super busy at work.  He will be with us tomorrow but then I think he will be working and maintaining the home front.  We have meals coming from friends at church - so kind - and I had to turn down so many offers of help.  What a nice problem to have.  We are so blessed to have so many people in our lives who care about our family.

I am a little frantic right now actually.  We celebrated Kellyanne's 10th birthday tonight ( her birthday was Friday) and now I am behind on having everything I wanted to have done before I left, done.  Oh well.
Kellyanne's birthday celebration was great.  Mimi and Poppy and Uncle Dennis came over for dinner and then a few friends came over for cake.  Kellyanne LOVES to blow out birthday candles so I got her the ones that relight after you blow them out. It was hysterical she'd blow them all out and then one by one they would relight.  She was cracking up and then we were all cracking up - those things were perfect for her!  She loved opening her presents and loved everything she got.  At the end of it all I realized she was missing a present I had bought, when I went upstairs I found that one and a few more.  I guess I have officially started my Christmas shopping : )

I feel very ADD right now.  It's like the night before vacation where you want to have everything packed and ready and you don't want to forget anything and - well, if you are a woman - you know what I mean.  This entry seems incredibly disjointed, which it is, but I wanted to get an update in before Kellyanne and I  take off on our exciting adventure. I will be on facebook at the hospital, I'll post some pictures and I will hopefully put together a more cohesive entry upon return.  Until then..........

California-esque

Many years ago, in a previous life, I traveled California from San Francisco to San Simeon. I camped in Big Sur and in Yosemite.  Big Sur, Monterey, Carmel are beautiful places.  The ocean is indescribable and the life is vibrant in my memory.  Yosemite is also beautiful.  Huge enough that you realize how very small you are. But my memory of it is "rocks".  Beautiful rocks, mind you, but rocks, jagged and layered and grey and cold.  I loved both areas, but I loved Big Sur, Monterey and Carmel so much more. Those place felt alive to me, the roaring sea, the artsy restaurants and stores, the seals, the people.  It was colorful both in nature and in culture.  I can close my eyes and return there very easily.

Lately I feel like I've been in Yosemite.  Things have been very "clinical" with regards to Kellyanne and I have been in a cold, grey place.  Jagged and hard.  I don't like that side of me.  I like my vibrant side.  My colorful, zesty, flowing side.  I'm not sure where it went.  I know it's there, I just have to be patient for it to return.

Our visit to Hopkins was brief and to the point.  In a nutshell Kellyanne's EEG is "a mess" and needs to be "cleaned up".  I asked questions, but got very few answers as the Dr. wants to have  the video EEG done and go from there.  The few questions she did answer she was painfully honest!

KA is scheduled to go to Hopkins from  3/12-3/15. We will be on the Epilepsy Monitoring Unit where she will be hooked up with EEG electrodes and videotaped. That's all I know at this point.  They sent a DVD about the EMU that we are to watch before going, but we haven't done that yet.  Maybe that will be our Friday night entertainment : )

Since being seen at Hopkins we have had to add a new medication to her regimen.  Monday was not a good day for her.  We are waiting to see how this new med helps/or doesn't. It's just a waiting game. Now we ask ourselves with regard to her behavior: normal? seizure? medication?  Who knows????????? But it makes me tired.

I don't want to close on a negative note.  Michael is doing well in Providence.  He will be home for Spring Break in 3 weeks!  Eilis turned 15!!!!!!!yesterday and is such a beautiful person.  Erin is becoming more confident in herself and always makes me smile.  Kellyanne loves her new 'book basket' and loves to read to me before bed, and Michael (husband) works endless hours, helps with the house and the  kids and never complains.  I don't know what my problem is......life is good in the Hagan home!

Ouch!

So yesterday, being Thursday, Kellyanne was supposed to go to her 2nd class at The Little Gym.  We got one of those nice email reminders that they wanted her back, her name, after all was written right there, a reminder to KELLYANNE that they were excited to see her again.  Okay, yes, I know it's the standard email they send to everyone who had been to a trial class, but still, there it was.
We had spoken to the owner the day before, a wonderful man, who explained that he was not able to secure a shadow for Kellyanne and that we would have to wait until he came up with someone or a plan to fit her in....or something to that effect.  I get it, I really do.  But it still doesn't take the pain away that my child was turned away because she didn't "fit in".  I'm not faulting the business.  They are working hard to make accommodations for Kellyanne, but the pit in my stomach was there on Wednesday night.  Kellyanne had talked about her gymnastics class, we bought her a gymnastics mat last weekend (thankfully off Craigs List) so she could practice forward rolls and the like, we used it as a carrot for "big girl" behavior......but she couldn't go last night and it made me sad.  And then to add insult to injury, this morning when I opened my email there was the note from The Little Gym telling KELLYANNE how much they missed her - again - a standard email that goes out to all who go to a trial class and then don't return....but, OUCH! That hurt!

Who's Different?

Finally, a chance to sit, down, collect my thoughts and share them with whoever wants to read them.
Last week I got a call from Kellyanne's school with a description of the behavior that makes us question, "is it or is it not a seizure".  Probably, yes. I went to observe her, even though she was back to "normal",  to see if there were some lingering effects that would give me a clue as to what had happened. Not really much to see.  Just a little girl in the library checking out her books.  We are so fortunate to have the relationship that we do with her teachers and that we live so close to the school that I can pop in and observe for myself.  It was the end of the day so she chose to ride home with me instead of the bus.  When we got home she had that glaze in her eyes that made me want to take her temperature, Sure enough 101.4 - that was enough to explain what happened at school. whether it was the fever or a seizure one can't know, but it did keep her home from school for the next 2 days.

Over the weekend, Michael (husband, not son) participated in the Polar Bear Plunge to benefit Special Olympics.  It was a beautiful day for us onlookers, obviously cold water for the plungers.  It was amazing to see so many thousands of people doing something as crazy as jumping into the freezing cold bay - and raising so much $$ for such a great cause.  We hope to get Kellyanne involved in Special Olympics soon.

Last night Kellyanne had her first gymnastics class at The Little Gym.  As Michael and I watched with an equal mix of nervousness and pride, we were amazed by the staff, who helped her do the things the other children were doing.  Kellyanne is very cautious, so sometimes it is necessary to give her that little push and say you can do it.
I of course was holding my breath the whole time, praying that she would follow the directions, wait in line and "fit in".  She did a pretty good job : )   About 1/2 way through the class you could see the other kids look at her and realize, 'there's something different about this kid'.  That's when I want to step in and say "You're right, there is something different, let me explain why she is different".  I think when you can recognize the difference and speak openly about it, educate and answer questions, kids then stop thinking about it.  It's like "oh, okay" and  they move on.  When we leave them to wonder, "why does she talk funny, run funny, screech, etc"  we leave them hanging to their own imaginations and that of their friends, where they concoct all sorts of  ideas, which are innocently ignorant.  They just don't know.  I welcome questions.  I welcome the opportunity for parents and children alike to ask about Kellyanne.  I like to share how she is like them and not like them.  I am not offended by honest curiosity.  I am offended by rude comments, stares, eye rolling and the like. Luckily, Kellyanne is oblivious to the fact that she is different, so maybe that's why I feel the way I do. We consider the fact that Kellyanne doesn't know she's different, a true blessing.  She will be spared the pain that my other 3 children have endured when they "didn't fit in, were ridiculed because of their differences, made fun of for who knows why....."   Now those people, I just wanted to SLAP!  Sorry.

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'?