July 21, 2009

Don’t know where to begin – except to say other than Sam and Hannah being very close to each other, they also share the same caring quality; have that same concerned character about them. It’s from their father I am sure…

Here is just one evening for us…

After being home alone for 2 days (David busy with work and catering to Ben’s extremely active social life – we see David for an hour in the morning; he gets home at 11p.m.) with nothing to do but roast away in the hot Arizona summer high temps, I thought it would be good to take a break from the monotony and get out of the house and spend the 20 bucks in my wallet on supper for us three. Well I had no idea just how much the monotony would be broken up.

An aside… as I sit down to write this complete with pencil and yellow writing tablet (have to use these tools because I am outside) my 7 yo son reputed to have autism is voluntarily cleaning horse poop out of 2 paddocks. He, Sam, is doing this after doctoring poor old mom up by bandaging her bleeding right knee. (I slightly injured (read barely scraped) myself trying to find Sam who of course was playing in his water fountain). Sam, such the hard worker. He said he was cleaning the paddocks to make Dad happy. He asked, “Do you think Dad will like it?” “Yes, Sam, Dad will love it.” Wish teenagers had the heart Sam does, or at least were as thoughtful and hardworking. We’ll see what the future has in store for St. Sam…

Then Sam told me, “Call Dad, because I’m gonna sleep with Mom all night because she hurt her knee badly and I need to help her. Mom, you need to gently get into bed and be careful with the covers so you don’t hurt your knee.” Who’s the blessed mother of sons???

But all this took place after the EMT situation – yes – the drama continues and I am a wall flower – a behind the scenes, stay OUT of the limelight person – call me an INTROVERT! Just where is my CAVE! – I’ve misplaced it!!!!!

We are so tired of this – we want out. We are overwhelmed and worn out!

And now, stay tuned for tonight’s episode of…… of what….   of situations we (Hannah and I mainly) don’t want to be in!

We are out at a neighborhood mexican low-key (LOW-KEY) restaurant. Sam and Hannah are finished and they take their quarters over to the candy machine to get M&Ms etc. I, as always, have my eyes fixed on Hannah and see her eyes roll up and her fall down. I am out of my seat in a heartbeat and rush over to catch her head before it slams to the floor. After she recovers, we three go into ladies room to wash our hands. Once we come to the table, the man sitting at another table asks if she is alright (or so I thought). I nodded, “Yes we’re fine, she’s fine thanks for asking blah blah blah.” Next thing I know his wife told me as she is on her cell phone that they called 911. Her husband, she explains is a fireman and he knew what was happening. I said NO, we don’t need EMT, my daughter has epilepsy blah blah blah.. Please call back and cancel the call, I will talk to the dispatcher myself. Which I did – but …

Well too late! We see a Surprise Fire truck right outside the restaurant windows. Hannah begins tearing up and my heart sinks low again in less than a week. Not sure how strong my heart actually is – but we are finding out! I met the EMTs at the door and told them I tried to cancel the call, my daughter has epilepsy, is having surgery next Tuesday… you get the drift… Hannah is just horrified and scared. But of course they by law had to complete the call. I understood and asked if there was  release form I could sign. There was but only after they took Hannah’s vitals. Hannah was just mortified. I promised her I wouldn’t leave her and that she could stay on my lap and explained what vitals were. The EMT took us over to a corner of the restaurant. After she realized they were not taking her away, explained what all those menacing-looking black cases carried by the EMTs were,  and that they weren’t going to be opened for her, she got chatty as we all know her to be. Sam also helped with “explanations” of how Hannah has seizures and the hosptial and on and on.You can just bet I asked for prayer from these angels of mercy for next Tuesday. I talked with the captain too after he apologized for just doing his job. Told him I understood and asked him to spread our prayer request around. The paramedic Matt Clarkson, who “treated” Hannah, had a tattoo on his arm of a cross with a C. Hannah asked him about it, snicker snicker… Always the evangelist. He said he got it in Dublin and that he was Celtic ~ well perhaps our sweet little Hannah will inspire him – in fact he said of her that she is just delightful, a real treasure and he wished her the best for next week – We know what a treasure we have in her. EMT Matt Clarkson doesn’t have to tell me, though I am glad he saw her for who she is.

I know what a treasure I am blessed with in her. Hannah is truly a gift. Her brother Sam, with his nursing ways, caring heart, and hard working ethic is too. I store these treasures in my heart… I forever will.

The “fireman” who called 911 though I said not to, left. He, wife and family were no where to be found. Hmmm.

On Friday evening, Hannah and I had a girls night out – dinner and window shopping at the mall. Hannah looked so pretty, I did her hair and she wore her Love’s Baby Soft perfume. We had cheesecake at the Cheesecake Factory and headed for the mall. She did have one seizure at restaurant but recovered without much embarrassment. But at the mall, she wanted to ride the escalator. Half way down, I felt her go down. I could not support her (she weighs 80 lbs.), nor could I pick her up. Talk about panic inside. I could see the metal treads disappearing into the floor below and us getting trampled by the people stacking up behind us (it was crowded). I tapped the man’s back in front of me with my free hand and with pleading eyes said, “Excuse me sir, please help me with my daughter.” He was either Hispanic or Asian, I think Asian, no taller than me. Clearly English was not his first language. He turned around and whipped Hannah up into his arms (she was still convulsing) and carried her to a nearby couch. He asked, “What happened, what happened?” I motioned my head with my hand, “She has epilepsy, seizures.” I sat down with Hannah and didn’t see him again. He disappeared into the throngs of mall shoppers. I didn’t get to thank him. She cried then collected herself. Then I cried! We sat for a while but when she saw my tears, she said we could go home. I told her no, this is what we came for and we will “shop.” And we did once I steadied myself. But I was very shaky for about 20 minutes, close to tears with a very thick throat and heavy heart.  It was so scary, and heartbreaking to know I couldn’t help her. Don’t know what we’ll do if surgery doesn’t work. I can’t bear to see Hannah slip away. She had so much life and love. It has to come back, she has to come back to us.

She did have a good time by the way. Very talkative and I had a hard time keeping up with her at the mall! Told her she could be a mall power walker! It was good for her to get out.

To the stranger who helped, I thank you and am forever in you debt. You acted immediately knowing just what had to be done. When help is needed, there is no necessity for language just a servant heart. I thank you.

Several people have asked for an update on Hannah…

My last post mentioned a drop in the number of seizures she was having and for most of June, Hannah didn’t have any seizures (during the daytime at least).  It was a nice relief for her (and for us).  Recently though she has started having more again, and she continues to experience negative side-effects of the medication.

We’ve decided to move forward with surgery which is scheduled for July 28th. In preparation for this, we’ve had several more visits to Phoenix Children’s Hospital.

Hannah had a comprehensive neuro-psychiatric exam to test things like IQ, behavior, motor skills, etc.  This test is done as a baseline so that when the same testing is administered a few months after surgery, we can tell what (if anything) has changed.

We also met with the surgeon who will be doing the surgery.  Talked a lot about the risks.  Several (like death and injury) are actually higher with uncontrolled seizures than they are with surgery.  Surgery does have a higher risk of infection and stroke though.  The stroke risk surprised me, but evidently, when they place the electrodes directly on the surface of the brain, there is the possibility that they could restrict necessary blood flow.  One of the most encouraging things I heard from the surgeon was that personality is not really affected when resecting only one side of the frontal lobe.  So… Hannah should still be “Hannah” after the surgery .

It’s obviously a scary time for us.  Please keep Hannah in your prayers.  Thanks.

If your curious to learn more about the type of surgery that will be done, this video is very informative both about surgery and about epilepsy (with uncontrolled seizures).  I also described the procedure a bit in a previous post.

It has this week! 

A lot of people are praying for Hannah. Last Wednesday, even my team at work took time out of the morning to walk up the prayer hill and pray. 

For the last several weeks Hannah has been averaging about 10 seizures a day.  That changed this weekend. Here’s a chart that we use to track her seizures.  Notice the last several days…

We haven’t changed anything else.  No medication changes, no diet changes, nothing. Just prayer.  After hours without seizures this weekend, My wife and I found ourselves looking at each other and wondering aloud  ”What’s going on here?”

A lot of people are praying for Hannah, and what a powerful “coincidence” that is evident in that chart.  Will the number of her seizures continue to drop? Will God heal her?  I don’t know.  I know that he can, but I also know that there so much more to God’s will than I’ll ever understand.  For now I’ll just continue to pray for her healing, for a break from the barrage of seizures, and for wisdom to know what to do given the options we have available.