Category: Family Life

Meet my family and follow along as we traverse the sometimes unfamiliar waters of ADHD, Epilepsy, and life as a ministry family.

To be or not to be ADD, that is the question

Deana4 Comments


I had my one month med check with my primary doctor today. She upped my dosage to 36mg, but she’s still not convinced that I’m ADD. And you know, neither am I at the moment.

I’m high energy – yes
I forget things – oh yeah
I get bored easily – yep

But ADD?

Edited on 3/3/09 – After being on Concert for 2 1/2 months, I do concede that I am indeed ADD. The change is astounding.

She thinks the pediatrician is wrong, but since I’m tolerating the meds so far we’ll go two months on the new dose. If that doesn’t help… then she thinks her original assessment is correct. I do not have ADD, I have WWS.

Wonder Woman Syndrome

She also thinks I’ve allowed someone to define my personality type as a defect of character.

I have two assignments – well three actually.
1. Get a composition notebook to keep my do lists and notes in
2. Start setting up a scheduled routine (Flylady is good)
3. Find TWO chores that I am no longer willing to do and PERMANENTLY delegate them.

I asked if she’d write a script for that third assignment.

“See honey, doctor’s orders. She said you have to do laundry from now on.”

This should be a fun month.

Epilepsy Claims Celebrity Son (Sad Blog Warning)

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This news report absolutely ripped my lungs out today. It hit a little too close to my heart and my deepest fears. John Travolta’s Son was found dead Friday. – John’s son Jette was only 16 and had epilepsy caused by a childhood illness when he was two. Jette apparently had a seizure in the bathroom and fell and hit his head. Autoposy results are pending.

Epilepsy isn’t supposed to be a death sentance. I know it can be. I know there are strands – rare strands – that are. But still. This one saddens me. And this is the second case I’ve heard about in just two weeks. One from my sweet friend in England who lost her baby girl to Wests Syndrome and now this story.

There are days I wish I didn’t have to remind Dillon to take his meds. There are nights I still jump up out of bed because I heard something, and find nothing but a sleeping child. There are days when he asks me to teach him how to drive, and I have to say not yet – six months seizure free and then I can teach you. And I feel, not quite pity, that’s not it, just kinda sad for him. If that makes sense.

And then I hear stories. I talk to Fi’s Mom about how we might finally have this undercontrol, having no idea they are fighting for their daughters life that week – and she loses – and I feel guilty even though I know I shouldn’t. I had no way of knowing. I knew they were in and out of the hospital, but I didn’t know how bad it truly was.

Please keep the Travolta’s and Fi’s family in your prayers this month.

Thanks.

ps.. for those who are wondering about Dillon’s Diagnosis – I never did post it – you can find more information here (ADNFLE). Thanks. I’ll write more about it later.

A Simple Note Really, it seems I’m ADD

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I’m always fascinated by the tucks and turns of life. Mine especially. I’ve struggled with a lot of things lately and written them off as “Well, you do have a lot on your plate, of course it’s hard.” but secretly, in some deep down quiet place, I really do think it’s harder for me that it should be.

Does that speak to anyone? Or just me.

My mother tells me that I never met a stranger. I was very smart but always lived below expectations. An underachiever – who worked very very hard to stay afloat mind you. Grade school was a nightmare. Sometime in high school, I was able to pull myself up enough to get A’s and B’s. But it was hard work. And you can forget about college. I was lucky to get my associates degree in computers. I had a 2.89 gpa as I recall.

Pastor calls me his “social butterfly” and always points me in the direction of new comers in the church.

I love to teach.
I’m great at making people laugh.
I lose – everything I touch.
My house? I prefer not to discuss it. 😉

I’m not dealing with rocket science here. Just life. I’m a stay at home mom with two boys. My husband travels. I lose papers, car keys, glasses, I forget to pay bills, my finances are a jumbled mess most of the time – we have the money, I just forget to click “PAY”.

My youngest is ADHD, but I missed the signs for the hyperactivity. I’m not hyper, much, more impulsive than anything else.

An impulsive mess, actually.

When Dillon was first diagnosed with being ADHD, his ped offered to work with me as well. I wrote that off as a money hungry sales pitch and found a new doctor. His second ped said the same, as did his neurologist. ADHD is heriditary Mom, he got it from someone, are you sure it’s not you?

No. It isn’t me. Yes, I’m scattered, but that’s only because I was never taught how to take care of a home. There can’t be anything wrong with me a little hard work and better organizational skills won’t fix.

I asked my doctor about it, and we thought “maybe I’m just depressed. Maybe that’s why I’m so overwhelmed by the simplicity of my life.” and so we tried Prozac. All that did was make me fall in love with the color yellow and I painted my oldest son’s room a bright mustard color.

My career in telecom was a great success when I knew what my job was. Some positions were great, I had a worksheet of orders to follow and my day was totally scheduled and I did well. Other positions like finance? Well, not so well. Those were opened ended planning positions and numbers just weren’t my thing, so they put me back on the floor as a trainer. I did great at that. I taught new engineers about telephony. I walked them through a long distance phone call. Teaching them every piece of equipment calls traveled through and the cost per piece. I got scattered in my presentations some times, and was usually told, “You’ve obviously worked very hard at this Deana, let’s just focus it in a little bit.”

Then there were the part time office jobs. Those were fun most of the time. Until I took one that I was over qualified for. I was bored to tears, and picked up admin stuff for the Senior Pastor. Even then? I started losing things. Things like his outlines, or his re-imbursement requests for the new Vicar. And when the food pantry needs went from eight a week, to eight a day? I just couldn’t keep track or stay focused.

I finally really DID get depressed. In 12 months I lost ten friends (death), the only school my kids had ever known, was bad at my $8/hr cake job, Dillon’s seizures got worse and other life issues aroze.

My husbands always says “Deana hates surprises as much as she hates change.” Too many surprises and too much change. Everything overwhelmed me to the point of my becoming almost comotose. Sitting wrapped in a blanket on my back porch for hours at a time was all I could handle then. This time the meds did more than change my likes in color. This time they were necessary. I stayed on them and in therapy, for two and a half years.

I haven’t needed depression meds for over a year now. I’m no longer depressed. I’ve eliminated EVERYTHING from my calender except my house and my boys. And I’m still behind, I’m still overwhelmed and it’s still harder than I think it should be.

Last month we had Dillon re-evaluated for his ADHD, and this time the doctor gave us a survey to fill out for ourselves. Jeff answered yes to four, I answered yes to 17 out of 20. He strongly suggested I see my Dr. and just try ADD meds and see if they don’t help.

So today, I went to see Dr Laura. The women who has seen me through my ups and downs over the past five years. The women – who it turns out – is also ADD. It took some walking through conversations and explaining exactly which survey I’d filled out, and Dillon’s doctors requests over the years.

No it wasn’t some internet survey by Eli Lilly.
No, I’m not here to get drugs to lose weight.
No, I’m not depressed – just still unable to keep up with life.
Yes, I’ve emptied my day runner – I do nothing but be a mom.
No, my laundry is not caught up, my house is not clean, I have unfinished projects from two years back at least and I cannot balance a checkbook.
Is life supposed to be this hard?
Why can other women do all that? And more. I don’t get it.
I can’t even work outside the home anymore. It’s all too hard to juggle.

So, starting today, I am on Concerta 27 mg. I’m curious to see how it works. Or if it works.

My ADHD son thinks this is hilarious. My husband is, well, “Staying out of it.” 😉
My other son – the only sane person in the house some days is expectantly hopefull.

Our Nativity

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I was at the store the other day, and walked through the aisles in wonder. Our local hobby store (Hobby Lobby) is owned by a Christian family. In this store there are Christmas trees, and not holiday trees. And in this store there are rows and rows of decorations. Our old Christmas tree finally bit the dust last year and so we purchased a new one as seen in an earlier blog. Some things though, don’t have the same feel when new. Sometimes old is better. Like my Grandmother’s Nativity set. How I got blessed enough to wind up with it, I’ll never know. But I did. And I’d never replace it for anything in the world. She hand painted every piece herself. It must have taken her forever. Mom says it took a few years before the set was completed. Looking at the detail on these pieces, I am not surprised.

Our Christmas Tree

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There are many stories surrounding the origin of the Christmas tree – all ranging from pagan rituals to Martin Luther. While the Romans and Greeks may have decorated with evergreens for the new year, and pagans may have used the trees for sacrifice and worship during the Winter Solstice, it is Martin Luther who is credited with bringing the first tree indoors.

“The Christmas tree comes to us from Martin Luther, who is credited with being inspired by the starry heavens one night and expressing his feelings to his family by bringing a fir tree into his home and attaching lighted candles to its branches. Fir meant fire—and fire is an ancient symbol for spirit. The tree also pointed toward the heavens. Eventually, decorative balls represented the planets, while the star that radiates from the top reminds us of Bethlehem. The entire tree with its decorations teaches us that the universe is witness to the Incarnation. In fact, the Christmas tree is just one more sign of Jesus’ birth. It is a means of retelling a miracle in a colourful and beautiful way, so that we can further understand and appreciate Jesus entering our world.”
From Charlie Cleverly, St. Aldate’s, Oxford

It’s interesting to me to find out that Christmas was once illegal in the colonies. Early Puritans considered it pagan – Christmas and Christmas trees didn’t become popular in the US until the 1800’s. The tradition was brought over by German Immigrants. Early trees were decorated with candles, fruit, flowers, and home made ornaments created to symbolize Christ.

Today’s Christmas trees are as different as the people who own them. I’ve seen some of the most beautiful trees ever in the homes of my friends. They decorate the trees themselves and they flow with symmetry and design.

We didn’t have a lot of money growing up, so my trees were always decorated with hand made ornaments, popcorn and cranberry strings, and a few glass balls. My husband grew up with a tree only decorated by his mother and it was just glass balls and lights.

We’ve combined our tastes and have a tradition of decorating the tree as a family. Does it flow? Is there symmetry? Probably not. But it IS beautiful. And the memories we have created by doing it together, are irreplaceable.

One of my many angels tucked inside the branches

Our angel on top of the tree. We used to have a star, but it broke and we couldn’t find another one that we liked.

In the Face of Angels and Chariots of Fire.

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2 Kings 6:15-17 (NIV)
“When the servant of the man of God got up and went out early the next morning, an army with horses and chariots had surrounded the city. “Oh, my lord, what shall we do?” the servant asked.

“Don’t be afraid,” the prophet answered. “Those who are with us are more than those who are with them.”

And Elisha prayed, “O LORD, open his eyes so he may see.” Then the LORD opened the servant’s eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha.”

Elisha was outnumbered. The enemy laid in wait from every side, and yet he wasn’t afraid. His servant? Well that was a different matter. It wasn’t the first time that Elisha had chariots. He was there when his mentor Elijah (2 Kings 2:12) was taken up in a chariot of fire. He knew they were there – and he prayed that God open the eyes of his servant that he might also see.

Sometimes we miss the chariots that surround us – sometimes God uses the faith of a servant/child to open our hearts to the possibilites of faith. Open the eyes of our hearts Lord, that we like Elisha may see your chariots.

When my boys were born, I kept the baby monitors on full blast so that I could hear the slightest sound and run in, should they need me. When they were sick, I slept on the floor next to their crib. You might say, I was a zealous new mother. I don’t know who learned how to sleep through the night first, me or my boys. Even today, I still have one ear cocked just in case.

My youngest son has epilepsy. He had his first grand mal seizure while napping in our bed at six-years-old. (If you don’t know what Grand Mal means, it’s where the whole body convulses. Pretty scary stuff. ) He’d had a migraine that morning and we were resting. The seizure took me by total surprise and I called the paramedics in a panic.

I would try to sleep in our bed after that and would invariably wind up on his bedroom floor listening. I kept this pattern up for about a month, before finally letting go. A year went by before he had another seizure.

On Father’s Day 2000 Dillon woke up with slurred speech, short term memory loss, and substantial muscle weakness on the left side of his body. The paramedics said it was a TIA or “mild Stroke.” The neurologist called it “Epilepsy” which really just translates to “seizure disorder.” or more simply put “Out of Mom’s Control.”

I don’t think so.

Both Dillon and I were afraid to sleep at night. My maternal instincts kept me awake listening for the slightest noise, so that I could run in and be there should he need me. I did not have the strength to sleep. My friends and I prayed continually for healing and for peace.

Every night our family would pray together that Jesus would hold Dillon while he slept and that God would send his angels down to watch over us and keep all of us safe. And we would try to crawl in to His lap for peace and comfort. Everyone, in their own beds, and no sleeping on the floor.

One night while we were sitting on our back porch swing rocking and singing together, Dillon asked me how I knew God would send his angels. I told him I just do, that it was about faith. But he looked up and said, “No Mommy. How do you KNOW He will.”

What happened to the easy questions, like “Where do babies come from?” That one I had an answer for. So I said a quiet prayer for the right words to say. How do I explain that I heard that prayer somewhere – I had no idea if it’s real or not, or where I heard it. I just did and thought it was cool.

It was one of those crystal clear Oklahoma nights where the sky just goes on forever, and I pointed at the stars and asked him what he saw. (My intent was to say if God can hang the heavens then surely he could send a few angels to watch over a child.) Dillon looked at the stars and said something only a child could say,

“EYES!”

“Eyes?” I replied. “I see stars.”

He said “Yeah Mommy, ANGEL EYES!”

With that he ran out to the middle of the yard, threw his head and his arms back and said, “Wow Mommy! Look at all the angels God sent to watch over me!” Then he gave me a quick hug and a kiss and ran back to bed, sleeping soundly for the first time in ages.

I of course, did not run straight to bed and sleep soundly. I fell flat on my face before the God of the universe in my backyard and asked him to see what my son sees.

Elisha saw Chariots, Dillon sees angels and I am learning to see the hand of God at work in ways I never imagined.

It is so easy in today’s world to feel outnumbered.
Feeling isn’t the same as real.
Sometimes we need our eyes opened
Sometimes we just need to look for chariots.

(February 10, 2014) – Dillon is seizure free today – five years, six months, and counting.

And Elisha prayed,

\”O LORD, open his eyes so he may see.\”
Then the LORD opened the servant\’s eyes,
and he looked and saw the hills full
of horses and chariots of fire all around Elisha.”

 

Success with Lamictal

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It’s been five weeks since we made the trip to the Children’s Hospital in Fort Worth Texas, and I’m happy to report that Dillon’s new medication is working. He has not had a seizure since October 5. Dr Malik put him on a low dose of Lamictal (25 mg twice a day) and Depakote ER (250 mg twice a day.) Dr Malik has seen a lot of success with this low dosage combination and thought Dillon was the perfect candidate for that.

There are potential side effects that need to be watched out for and with the slow ramping up of the medication, we’ve been blessed to avoid those. The only one that came was a temporary and very mild case of pleurisy. That too is now gone.

Since coming home from Fort Worth, life has been busy. Between helping Charlie apply for colleges, fill out scholarship forms, and fall yard work, my boys have both competed in a Tri-State soccer tournament in Joplin (their team placed third overall) as well as a high school retreat. This week Charlie is in Washington DC with several classmates. When he returns, he’ll being finishing his applications, trying out for a play, working on a Youth Retreat, and being the world’s master guitar hero.

Tri-State was scary for mom, and annoying for Dillon. I went along to not only chear on my boys, but to keep an eye on him. Varsity soccer is rough and Dillon got creamed more than once. Creamed or not, he kept going back out there and I’m proud of him for that.
We only had one (or 2) real scares where he collided with the Goalie from Grace, took a cleat to the chest/throat, and hit another players shoulder with his head. All that and not a single seizure. He’s going to be just fine.

That is life in a nutshell right now. Living with epilepsy, means living, not waiting. And that is encouraging.

When Staying at the Hospital with Your Child

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Hospital trips are never fun even when they are planned. If you ever find yourself with a planned hospital trip with your child, young or old here are a few ideas for you to take along.

1. Handheld games such as video games of all sorts – Dillon owns a PSP, but any hand held will do. Toys R Us and Wal-Mart also sell those $10 hand held type games for all ages.

2. A favorite animal or blanket. While Dillon is too old for a stuffed animal or security blanket, he does have a throw that my mother made him several years ago. Hospital blankets are actually very thin and the room can be cold. Having that extra throw helped keep him warm and did provide a sense of normalcy and home.

3. Art supplies. Younger children can be kept entertained with a coloring book and crayons. Dillon (my artist in the family) has his own sketch book and charcoal pencils. This did an excellent job keeping him occupied and giving him something productive to focus on rather than the wires glued to his head. It also provided a bonding opportunity between he and the medical staff – giving them something tangible to talk about other than his medical condition.

4. Books are always a favorite, unless you are 15. Most children’s hospitals have an excellent selection of books for your child to read while they are there.

5. Snacks – The hospital only serves three meals a day and let’s face it while the food is nutritious , tasty it isn’t. I could not get Dillon to really eat any of the meals they served even if they were “kid friendly.” We brought with us things like trail mix, fruit snacks, Jello/fruit cups, string cheese and slim jims. The floor had a family kitchen with a refrigerator. Be sure check with the nurse or doctor before allowing your child to eat them. Dillon was placed on a special diet our second day there (no sugar) and he could not have most of what I brought for that one day. They did however allow sunflower seeds.

6. Toiletries for both you and your child. Children‘s rooms are usually private, they also supply little bitty towels and baby shampoo. Thankfully I brought our own. While Dillon could not take a shower until the last day due to the EEG, he was much appreciative of having some personal comforts from home such as adult shampoo. If you do forget something from home, such as a toothbrush, you can find them in the gift shop at the hospital.

7. Do not forget money for meals for you. Dillon’s food was covered on our three day stay, mine were not. The hospital cafeteria has changed over the years offering a wide variety of excellent meals, but plan on spending no less that $7 per meal.

8. Some rooms come equipped with DVD/VCR players (at least in the kids ward.) so we brought different videos from home to keep entertained during the daytime. The hospital also had a child resource center that allowed us to check out movies and even a Wii Video game player with Wii Sports.

9. Cell phones and laptops if you have them. – Dillon and I both brought our cell phones with us. Since we have unlimited texting, he was able to keep in touch with his classmates during the stay. This was very comforting for him and it helped me stay in touch with my husband when phone calls just were not feasible. I brought a lap top just in case we had Wi-Fi access. The floor did indeed allow wi-fi, but most pages were banned from their server. Still I was able to access blogger as well as yahoo mail. This enabled us to keep in touch with friends and family who wanted updates during our stay. It also came in handy when I wanted to research medication suggestions or tests they were running.

10. A folder and a notebook. Being in the hospital means being inundated with facts, figures, information, and what not. There was absolutely no way I could keep all of the information in my head. Write down what they tell you so that you can look it over, and mark any questions you have for when they come back. I had a notebook folder that I was able to put all of the fact sheets and whatnot the doctors and nurses gave us while we were there.

I don’t suggest bringing unrealistic expectations, such as you and your child are going to get along wonderfully, that they are happy and compliant to be there or that you as a parent will handle every situation perfectly. Hospitals are a scary place and children will communicate that fear in many different ways. A normally talkative and enjoyable child can suddenly start acting out and withdrawing emotionally. Don’t force a kid to be happy to be there. Give them honest and age appropriate answer to their questions. Be there with them, love them, and keep your boundaries. Sometimes a child will test to see “How sick am I?“ by seeing how much they get away with. The more a child suddenly gets away with, the more sick they will believe they are. Remembering that will help a lot. And remembering to take breaks will help you a lot as well. Parents can be scared too, but we try not to show it because we don’t want to scare our kids. Be patient and understanding of yourself as well.

I brought Dillon’s homework with him thinking he would be able to work on it while we were there. This child was so sleep deprived, because of the type of testing we were doing, that he wasn’t able to work on it. And that’s okay. Work with the school and teachers for an extension on missed assignments if need be.

And don’t forget to take care of yourself. Most of the people on the ward were locals and had multiple families members there to help them. That isn’t always the case, and sometimes you’ll find yourself the primary caretaker while your child is in the hospital. Don’t be afraid to take walks from time to time (just check with the nurse first) or to eat downstairs. Mom’s and Dad’s need quiet moments too. What parents are offered to sleep on might not be the best accommodations (I had a hard mat-like couch thing) but do try to sleep or rest. I know it’s hard, I spent more time laying awake listening for Dillon than I did sleeping, but do try.

And take advantage of the things the hospital does offer. The child care people offered to come in and play games with Dillon to give me a break – but I didn’t take advantage of that. Hospitals also have chaplains available to talk too.. Just to talk to if you need a spiritual pick me up.

It doesn’t matter if you are dealing with a new diagnosis or a long term issue, every step, every test, every something new brings it own challenges, fears and / or joys. Have a support group of friends and family to talk to and lean on. Don’t be super Mom (or Dad) and think you have to do it all by yourself. You don’t. Don’t be afraid to ask for help.

A Mother’s Guilt and God’s Grace for Parents.

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There is nothing that shows the truth about relationships like being under video surveillance for 48 hours – with a teenager to humble you – or me rather. What on earth made me think I could handle that trip alone is beyond me… That was mistake – and a good experience all at once. It didn’t matter what I did – I felt guilty. I hated making him be there, but knew we had to be. I hated leaving my oldest behind – but knew he could handle it. And I hated watching my baby go through things a mom doesn’t want to happen. I felt guilty when I stayed, when I corrected unacceptable behavior and I felt guilty when I left the room for walks, or coffee or whatever. I only left him alone maybe three or four times a day. I needed those quiet times to pray or find other parents who were also someplace they didn’t want to be, looking for answers and healing as well. But I still felt guilty. False shame hits the best of all of us some days.

Dillon and I spent three days in a Fort Worth hospital, trying to find answers for his epilepsy. Neither of us wanted to be there really. Who would? I wanted answers and was willing to stay to find them. Dillon just wanted out of there, and definitely did not like the sticks (5 in all) , the wires, the food, or the camera. Or sharing a room with MOM of all people for three days straight. Not only did the staff get to see his seizures and eeg activity – they got to see the honesty of how a Mom and teenage son relate during three stressful days of constant activity, boredom, and no sleep. Oh yes, we gave them a great stress study. Mom’s and sons can get snippy with each other. 😉 Even snippy, they still love each other. Though I will agree that special needs nurses do not necessarily have a sense of humor. There were jokes that we shared that he thought were funny, but no one else did.

They don’t have many teenagers in that ward. Mostly they deal with young children – thankfully there were staff who had teenagers, and they understood the looks, the sighs and the breaks.

I can think of 100 things I could have done differently – but really, I’m just trying to change the reality of his being mad about being there. He had the right to be mad, and I kept the line of being mad is okay, taking it out on others is not. The rules at home still apply. I needed to let go of making it all okay – because it really wasn’t. Not for him anyway. There was no way Dillon was going to talk to me about what was going on in his thoughts and emotions while the camera was rolling. Conversation was not what he wanted. He had my company though – he knew I was there for him and with him. I did succeed in getting him to play with the Wii – I was so bad at the pool game he just had to help. Score one for mom. Mostly though, he drew – or watched a sports game or played on my laptop – he found a games web page. He wanted to speak to no one..

What they didn’t see – was the ride home. About halfway home tensions released and our relationship showed the other side – the best parts of honesty, communication and love. A child who will allow me to touch him and tell him I love him – but only when no one is looking. I would try to touch him in the hospital and he’d pull away in anger and teenage disgust. And yet riding home, listening to a metal station for part of the ride and comparing it to the rock music of my day – we find a middle road and grace in a changing relationship. Riding home, away from the cameras – he could find his voice and feel my touch.

Raising boys, is harder than I ever imagined it would be and yet God’s grace is sufficient and never ending. And his love – like a mother’s – knows no end.

No Pictures MOM!

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We arrived at the Cook’s Children’s Hospital in Fort Worth at about 11:15 yesterday morning. It’s a 5 1/2 hour drive from Broken Arrow.

I am presently sleep deprived so I apologize now for all typos and grammatical errors. 😉

I wanted to document this trip a bit, but Dillon won’t allow pictures. I don’t blame him really. He thinks the fewer people who know we are here, the better. I, however believe in the power of prayer. And we have friends who genuinly care and want to stay updated.

There was a time when Dillon would laugh and joke about epilepsy. “What does a seizure look like? Well, ever catch a fish and watch it bounce on the deck? Kinda like that.” but at 15, after years of hoping, wishing, and praying this would go away, his sense of humor is gone. He’s turning bitter over this, and I’m presently at a loss as to how to teach him to find the humor and joy in the midst of it all. But we keep trying.

I did discover last night that they do have wi-fi afterall. Facebook and myspace are blocked, but blogger is open. So I’ll post my updates here. Facebook feeds from here so I’m hoping this works.

Yesterday was a normal day as far as registration and such went on. Cooks is much larger than Saint Francis and finding our way through the castled walls (Yes, it looks like a castle for the most part) took some time. But we found our way with a little help from our friends on staff.

The staff here is excellent. Our first person to meet was Donnie our paramedic. He plays soccer just like Dillon does. That helped bond them a bit while Donnie took his stats. Our Day nurse Jenn, is a young gal, full of energy and has a small stud on her nose. Dillon liked her pretty fast. I’m feeling my age. I look at these “kids” on the floor who aren’t much older than Charlie and remember they’ve already been through college and know far more that I ever could about medicine.

I forgot the name of his eeg tech, but she will be back today. She is about 47 and has – SIX kids of her own. Born and raised in the Fort Worth area. The fact that I try to hold conversations with everyone I met yesterday – drove him insane. By the end of the day, he was ready to disown me. Conversing was not what he wanted with anyone including me.

After meeing Doctor Malik and his nurse practioner Esther (I love that name!), I felt a little more confident in this trip. Dr Malik has ordered not only the video EEG, but also an MRI, Cat Scan and PET scan. The pet scan sounds the coolest. Modern technology is great. They will put Dillon on a no caffine and no sugar diet for Wednesday thus depriving his brain of sugar. Then on Thursday they will inject a dye that mimics sugar to the brain. The parts of the brain that are not effected by the seizures will soak up the sugar/die. The parts effected by the seizures will not. Is that not cool or what? For the first time in eight years, we will be able to find what parts of the brain are effected. Normally they guess at it, buy the seizure types and what part of the body is impacted. It’s a mirror. If the left side of the body is what is moving, then the seizure is usually in the right side of the brain. Now we have a shot at getting more information.

his night nurse is Kim – another Mom like me. Closer to my age, maybe a little older. Very warm and very kind. And very nurturing. Telling me to make sure that I also take care of myself and that they will take care of both of us while we are here, not just Dillon.

They took Dillon off his meds yesterday, and true to form he did have a seizure at about 6 am. They caught the whole thing on tape and on the EEG. I’m thrilled. The staff came in and the nurse spoke to the camera about the stuff the camera couldn’t see. normal stuff really. The only thing that caught me was “His lips are gray. He’s not breathing well.” It was over almost as soon as it started, and he came to looking for me.

I do get to sleep in the same room. They have a couch/bed thing with a hard foam mattress. Sleep is not really the right word – it’s more like lay down, close your eyes and listen all night. That and jump five feet when they come in to take his stats. But I think I got a couple of hours, so we’re good.

Not much more to write at this moment. I’ll post more as the day or week progresses. God bless.