March 31, 2010

>> Wednesday, March 31, 2010

No events.

Bug is REALLY into climbing at the moment. We have run him off the bathroom counters a few times. It's really super cute too. He will be playing with his doodle pro, spinning, then he will stop, look around slyly and then drop the DP and run into the bathroom.

Tay is having great fun running after him and she brings him back in with this BIG smile on his face.

The third or fourth time we did that, he was sitting on the end of the couch from me, PRETENDING to be playing, looking sideways at me, grinning. I said: 'Don't even think about it' and the grin turned into a full blown smile.

The kid has such a fun personality, and it's a joy to watch it develop.

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March 30, 2010

>> Tuesday, March 30, 2010

No events.

He is still sick. I am sick, Tay is sick. And I was too yuckie to go to the Doctor yesterday but I am definitely dragging my sick fanny in there. This is getting stupid, we have been sick for so long.

Although it certainly isn't slowing him down any, he was all energy, all day yesterday and today is starting out the same way. Sick and energetic are not a good combination.

He was doing a lot of DaDaDa yesterday and I woke up to him doing BuhBuhBuh. I like the vocalizations.

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March 29, 2010

>> Monday, March 29, 2010

No events.

He is really quite ickie this morning too. Congested and coughing. Poor kiddo can't catch a break. So when Tay goes to school, we will be seeing the Walk In doctor.

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March 28, 2010

>> Sunday, March 28, 2010

No events while he slept anyway.

Yesterday afternoon, we took Nana home. On the way, Bug locked up. The seizure lasted 20 seconds and was T/C. He recovered immediately and went back to spinning the Doodle Pro stylus.

He was very animated and hungry yesterday. Today, he won't eat yet. It's 10am and he has been up for 2 hours just playing with puzzles, Doodle Pro and other spinning stuff.

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March 27, 2010

>> Saturday, March 27, 2010

No events. Wow.

Enjoying that, but does it mean that he will have issues during the day? Hope not but we are keeping a close eye on him. He is active and having fun on the exercise ball.

The oral fixation is getting interesting, everything, and I mean EVERYTHING goes in his mouth. He didn't do this when he was an infant so I find it curious he is doing it now. One could argue it's his Autistic side coming out, that and the tactile nature of his food eating, but I don't know.

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Purple Day Picts!

Yeah, OK, we didn't do much for Purple Day, we found out about it a little late. Mom still wanted to try to get Smith's Bakery to bake some Purple Cupcakes, but since it was so close to Easter, they already had. We will get them into it next year. We all dressed in Purple and told EVERYONE we ran into about Bug's Epilepsy. I will print up some buttons with some facts about Epilepsy for next year, that way people can read for themselves.

It was nice though, everyone we talked to was very supportive. That doesn't happen everywhere which is why Purple Day is so wonderful!

I liked it so much, I am now a Purple Day Ambassador. Gonna have to wear more purple and get some pins. :)

Nana and Her Purple Cupcake




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THIS is Purple Day at our house...

>> Friday, March 26, 2010

We built up to Purple Day, excited, prepared, optimistic and energetic. TODAY was going to be a GREAT day.

In shades of great it was.

But mostly,

It sucked.

It started off innocently enough by me taking Bug to school. I brought the staff up to par on why Bug and I were wearing purple and on my way out I heard...

Something has come up.

It happens a lot. THIS something was pretty darn serious to Glenn and I. While Bug was out sick, the little boy that attacked him earlier, the one that bit him and gave him the opportunity for his first stitches, was now ON HIS BUS.

I was stunned. His family has moved and he rides Bug's bus. They took his glasses off and they are both in seat belts/harnesses but..WTH? I agreed that it was the LAST thing that the drivers and staff (let alone the parents of BOTH children) need to worry about and I got the number for transportation at Alpine School District. I called in the car. Left a message and waited, trying to calm down.

Dot called back a little while later and told me they were working on it. I stressed the importance by detailing his need for stitches. I believe it was the first she had heard of it because she said OH DEAR a few times. He will be on a different bus next week. Until then, I am dropping him off, and picking him up.

Incident one = solved.

Tay went to school, we had lunch, picked up Tay and went home.

At 3:15 I got ready to leave to pick up Bug. As I was trying to clear the Check Engine Light in my car, my cell phone rang. It was Bug's teacher. She NEVER calls. I knew he had a seizure.

Sure enough, 2 minute Tonic by all accounts. I got there and he was sitting on the floor playing with a Doodle Pro. His Anisocoria was VERY apparent. I held him on the floor for a while, he wasn't smiling but he was cuddling with me. I talked to him and listened to them describe what had happened. They all had the same sad look on their faces. I felt bad for them. I am used to it, it sucks but it doesn't rip my heart out most times. This was a first for them and the first time always sucks. After about 20 minutes, and some hat play with Sofia..purple hat was VERY fun for her...I took him to the car. He was still not smiling.

In the car I called PCMC. I asked for an appointment with the Head of The Department. I got: You need a new referral. Wait...what? I let them know that I thought it was ridiculous that I needed to go BACK to his Primary Care Physician to get a referral to a department that I already HAD a referral to. She told me that they needed the DOCTOR to identify WHY I was requesting a new Doctor.

Because parents don't exist in their world.

I told her that the original referral didn't specify a Doctor at all and I was given Dr. V. She argued a tad by saying: You saw Dr. B first. Yeah, when HE WAS 3! I wanted her again, I didn't ask for Dr. V, I asked for Dr. B and didn't get her so how is THAT my fault? I am NOT happy with no PET and MEG testing and that Dr. V thinks we are done with testing and he needs a VNS. So, I said, since the referral does NOT state a Doc..I want to see the Head. She said: That's not how it works at Primary Children's. My response:

Oh really? Because I wasn't happy with a Doc at Moran, which is a PART of Primary Children's and they got me to the Head of THAT department without another referral. They made me VERY happy. It must be NEUROLOGY that doesn't work that way.

I was told, after a lot more back and forth about WHY I WILL NOT BE GETTING A DIFFERENT REFERRAL, that the Head would probably just refer me back to Dr. V. I said, and I quote:

"If the Head of the Department sends me back to the source of my frustration, I will NOT be going back to PCMC at all".

Then I heard: I will send him a message and have him call you.

He did NOT call back. Probably good for him, but not good for Bug.

Incident two = In progress

All night his Anisocoria is very present. It reminds me how I have failed helping him. He is happy now, and smiling and was cuddling and chirping at me. It was wonderful. I gave him his medications and I prayed he has good ending to his first Purple Day.

My Purple Day needs work.

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Purple Day

It's just Epilepsy.

There is a fear, inherent in the human being that grasps a hold of anything deemed different and labels it bad or loathsome. The uneducated, unenlightened mind will wrap itself up in this fear and lash out as a defense against that thing, that unknown, from becoming apart of themselves. The being will attack what it does not understand. It is a natural, horrible mechanism, not to be bullied and berated into oblivion but to be taught and trained to see the facts, the truth in the fear. And thus, eliminating the attack response, leaving ignorance behind and acceptance in its place.

So let's get those facts straight, from www.purpleday.org:

What is Epilepsy?
• Epilepsy is one of the most common neurological disorders, affecting 300,000 people in Canada and 50 million people worldwide
• Epilepsy is a group of disorders of the central nervous system, specifically the brain, and is characterized by recurrent unprovoked seizures
• Epilepsy can occur at any age
• Epilepsy is not contagious, and is rarely fatal
• Epilepsy has many different causes, and determining the specific cause for any one person's epilepsy may be difficult
• People with epilepsy have the same range of intelligence as the general public
• A single seizure does not constitute epilepsy. At least one in every 10 people will have one seizure in their lifetime


Bug has NOT been diagnosed with Epilepsy. He has an official diagnosis, at this time, of Generalized Seizure Disorder. There is a difference. Medically. When you are a mother watching your son seize several times a day, it doesn't matter what the clinical difference is (and that CLINICAL difference is simply put: They can't put his EEG pattern into a known Epilepsy pattern), it matters that he doesn't stop breathing, or that he falls.

Bug has a slightly greater chance of death than the person with the known Epilepsy. The biggest problem with a seizure, isn't that it causes brain damage, that is a myth, it's that the person could hurt themselves. Seizures CAN cause brain damage, do not misunderstand, but generally speaking it is caused by the lack of oxygen from the seizure, unless the Epilepsy is associated with another chronic condition.

The reason Bug has a greater chance than most is because we do NOT know what is causing them, or how bad they can get. Sudden explained death in people with seizures occurs more often in persons with Generalized Seizure Disorder. It's not a drastically greater chance, but it's there, always in the background.

There is no reason he will not have a fun, full life. None whatsoever. WE will take him to all the places we had planned on taking our children and he will do all the things every other child would do. One of us will do it with him, so he won't get hurt if he seizes in the middle of it. But, he will live his life like it is a gift to be enjoyed.

And THAT is why I wear purple proudly and obnoxiously today. It is my dedication to him, that I am NOT ashamed or scared, that I will not let this slow him down, that he will smile more than he cries. And that we will be proud that he is our son, brother, grandson and nephew. He is sunshine. And he is Epileptic. Big deal.

I love you Bug. More than you may ever know.

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The great eye exam

>> Thursday, March 25, 2010

Went off without a hitch.

Bug was in a fine mood, I was in a fine mood, Glenn was in a fine mood but most importantly, Dr. Hoffman was in a fine mood. I liked him immediately.

So I liked him, and Glenn liked him, Bug ignored him.

We started out a little late because we went to the wrong place. It happens. When we got to the Same Day Surgery Unit (using the most difficult directions EVER), I realized that we parked at the furthest point from where we needed to be. Oh well.

Bug was tired. We had kept him up so he would be tired and less combative. He's never been that bad, just a handful, and making him tired helps manage that handful.

After the weigh in at 50lbs (is he losing weight or is it THAT inconsistent?) we went into the room and they took vitals and gave him eye drops to dilate his pupils. He hated it. He fought it. But, the nurses are better than he is and pretty soon he started looking annoyed by light and his pupils were huge.

We moved him into pre-op and that's when Dr. Hoffman entered. He was kind and supportive and put us promptly at ease. We didn't expect that this test would tell us anything, heck, we were sure it would be perfectly normal, like almost every test so far, but a new symptom HAS to be examined closely. And Dr. Hoffman assured us he would look VERY closely. I had no doubt he would.

They took him from me and we watched him go. It's always sad. And I vowed I wouldn't cry and I didn't mostly. We decided to get some breakfast. By the time we paid and sat down we were able to eat a few bites before we were called back to Same Day. That was fast and the SECOND time we didn't get to eat the breakfast we had bought.

Once back, we were greeted by Dr. Hoffman who took us into a consultation room and told us Bug is slightly far-sighted. That was the big finding. Everything else was perfect. Shock? No. Disappoinment? Not really. Relief? Jury's out.

Dr. Hoffman was very gracious and understanding, he took his time explaining things and we left feeling like I had been a biatch for good reason. Glenn told me that if it got that quality of Doctor, I should feel free to be a biatch more. Not in so many words of course, he is more eloquent than I am.

On the way home, he had a seizure. It sucked. A lot. It sucked a lot. But he recovered quickly and we bought him some Grinders for being such a good boy. I shaded his eyes with my sweater because the sunglasses they gave us for him where more an annoyance for me than a help for him (he took them off and I sat on them when I went in back during his seizure).

Although we have no more answers now than before, we know what it is NOT and that is one step closer to finding Bug.

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Double Damn

>> Wednesday, March 24, 2010

Another seizure.

While in the car, waiting for Nana, he made a grunt noise. I turned around and saw him rigid with the plastic cord connecting the earplugs in his mouth. I tried to remove it but he was definitely lock jawed, so I waited and made sure he could breathe. About 20 seconds later he was out of the seizure and doing well.

I am calling the Head of Primary Children's Neurology tomorrow. I also found out they have the MEG testing equipment. So why hasn't he been tested?

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Well..damn

Maybe it was a fluke...or left over from the bathtub event but Bug had three seizures between last night and this morning.

Damn.

He is sick, he did have a scary night the night before, and he had only had his meds in him for 3 hours but at 10:45 he had his first. It was 15 seconds, and it was T/C. Fully rigid, eyes open, fussed a little and then back to sleep. He followed that up at 11:15 with another. This time it was only a 5 second T/C and he didn't wake up at all. He had the seizure and then went right back to sleep. It was good for him.

At 8:15am he had one more. Glenn said it was about 15 seconds and it was a T/C. He got up for the day about 8:30am and I took him to school after unsuccessful attempts at feeding.

He was excited to be at school. As soon as I pulled up he climbed out of his seatbelt. He almost knocked me over getting out of the car. Once he was at his classroom, he paused at the door. Chin down, acting shy. But after a few seconds, he was all over the toy cabinet.

I am a little concerned about him today, so we will see.

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Guardian Angel

>> Tuesday, March 23, 2010

Bug has a Guardian Angel, and her name is Taylor.

He had one event. One very bad, very scary event last night. And he was in the bathtub.

I had left the room for a minute when Tay started screaming Seizure. I didn't hear her, Glenn didn't hear her. She tried to get his head above the water and because he was in full T/C, she couldn't.

The second time she screamed louder and Glenn got Bug out of the water. He was still in seizure and not breathing. When he is in full T/C, he will go blue. It's been a while since we have seen that, but coupled with the fact that he was underwater for, who knows, how long (not more than a minute we think) we weren't sure what to think.

I got to Bug as he was starting to come out of it. He took small, short breaths and then, when he was fully out of it, he coughed and began breathing more regularly. I expected he would cough up water but he didn't. That meant, he didn't get any in his lungs.

When a person is submerged, their throat closes off to prevent water from entering, if you couple that response with his seizure then he wasn't getting much of anything in.

Tay was very upset. She thought she should have done more. But what she did, was save her brother. When Glenn told her that she was a Hero, and she beamed.

His Anisocoria was bad after the seizure but he was fine. Mom and Dad aged ten years but you wouldn't know he had a close call at all. He is active and energetic, eating and soiling diapers like crazy. Playing with anything and everything and aside from the runny nose, perfectly Bug.

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Morning Update - March 22, 2010

>> Monday, March 22, 2010

One event.

Not bad, but concerning, since it was almost 3 hours after his medication. Still, it lasted only about 15 seconds. He was aware though, I hate those kind. He reached for me, somewhat rigid, and as it progressed he let out a loud moan almost a scream. When it passed, he held on to my hand, gave me a smile for a few minutes and then rolled away to go back to sleep. I am glad he recovered so quickly.

He woke up very energetic and hungry. He has been eating really well despite the cold. Curiously, he drank A LOT of water yesterday. By my count, 10 glasses of water. And that's not including whatever anyone else gave him. Today he had 3 glasses and then went for the Coke.

175mg Lamictal
8ml Keppra
150mg Zonegran

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Morning Update - March 21, 2010

>> Sunday, March 21, 2010

Two nights with no events. Nice.

He is enjoying being in the car more and more. We took the Cruiser off-road a bit yesterday and he was loving it. He has been singing with the music too...well humming and just being excited, but no doubt he is grooving to the tunes. Still has a runny nose. He is sick a lot. Of course, we all are.

I have been working on the PECS images and have found some good sites...I will put a link up in the hopes that this could help even more people than it already has.

Also, trying to convince Glenn to let me take Bug to see a DAN doctor. One reaches that point, at which, anything that somewhat resembles a possibility for improvement (not looking for recovery here) and doesn't sound like it's being shoveled out of the back of a van and has the label 'snake oil' displayed prominently on it, will be attempted. What harm can be done? A lot if you don't understand how the medications would work with a new diet. Still a lot of research and work to be done but I think we are open to a modified diet.

God help us all.

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Morning Update - March 19, 2010

>> Friday, March 19, 2010

One event last night, about a half hour after his medication.

We got the medication in him a little on the late side, since he had already fallen asleep once. He is just burning through it too quickly. But one is better than 10 and he is happy and cuddly this morning. Very vocal with his humming while spinning.

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March 18, 2010

>> Thursday, March 18, 2010


Bug had one event two nights ago but last night was heaven. No issues, except a rabbit chasing dream. He made the cutest little whiny sounds while he slept. It was an 'awww...so cute' moment. He looks like an angel when he sleeps. I know, a lot of people say that but I really mean it, and I am not JUST the Mom, ya know?

I was looking at video's and pictures of little Bug today, remembering that funny little boy that was always trying to get people to smile. He still does wander around the room trying to acknowledge everyone and making them feel like they are a part of something special. Bug has this way about him that just makes people smile.

Bev and Robin call him Magic Buddy. And he is. He can make anyone happy just by looking at them. He meets one's gaze and you can see his whole being smiling. It makes one feel like they are the most important person in the world at that moment. And, at THAT moment, he or she is the most important person in the world...to Bug.

What a completely fabulous quality. He gets it from me.

175mg Lamictal
8ml Keppra
150mg Zonegran

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ENT Follow Up

>> Tuesday, March 16, 2010

Bug's appointment was at 8am. Glenn's flight left at 8:20. Seemed like a timing issue that would work out well. And it might have, except I forgot my wallet. Mistake number 1.

We dropped Daddy off at the airport with hugs, kisses and all sorts of well wishes ad headed to Primary Children's. At least, I THOUGHT that was where I was supposed to go.

We headed up North Temple. Mistake number 2. I thought: North Temple is two blocks North of 100s so I can cut over once I get closer to the University. The problem was GETTING TOWARD the University. It took us 25 minutes. We were 10 minutes late. I had to get Bug dressed because we picked him up out of his peaceful slumber (with NO events), blanket and all, and put him into the car. So, the battle of clothing began and ended in 5 minutes. Not bad. He even had shoes.

We walked, rather slowly for some reason, into Clinic B and were told Dr. Munz was at University Hospital in the mornings. Drat. Mistake number 3. I rolled my eyes and followed her directions. Bug was not having it though and was literally dragging his feet.

What should have taken less than 3 minutes to traverse took us 10. He was NOT having it. So, we got to the correct place, he sat in his OWN chair because he did NOT want to have anything to do with my lap and he played with some toys. I got him all signed in and less than 4 minutes later, they called us back.

Bug was weighed...53 pounds..although I call BS on that...and we were moved into the room. Dr. Munz will be right in, one of us heard and the door closed. Then the door opened and in walked Dr. Munz. I really like him. He said Hi to Bug, proffered a high five and then sat down. Bug walked over to the empty stool and began to spin. True to form.

Is that OK? I asked, having remembered my LAST doctor visit.

Dr. Munz, grinned and said: And expected as long as he doesn't try to sit on it. At that PRECISE moment, Bug tried to sit on it. I rushed over and took him off and let him continue spinning it.

Dr. Munz began: We are discussing his ABR, correct.

I held my breath: Yes.

It was abnormal, signalling some brain stem problem but it was not completely abnormal. So, let's see if he has some fluid (paraphrasing).

Sure enough, right ear was fluid filled and left ear was clear. The left ear was the one with the missing waveform.

I pointed out that he does NOT like anyone to touch his right ear. Never has, as far as I can remember. That would be the fluid.

Dr. Munz continued: We will want to keep an eye on him for two months. Studies have shown that the fluid levels in a child's ear can fluctuate on a daily basis, so we give it some time.

I had already heard that so it was not a shock.

I asked a little about Speech Therapy and he told me that Bug should have it at least 3 times a week. THAT is gonna be a battle. I will NOT fight that fight until I KNOW if he needs tubes or not. We could just be spinning our wheels.

Bug walked over to Dr. Munz as he was sitting on his stool and began to jabber at him. Munz raised an eyebrow slightly and listened. Bug 'talks' with his mouth closed. It can sound like he is saying words with his lips together. It's very curious. And Munz heard it. Cool.

We gathered up our belongings and headed out to the desk with Dr. Munz to make another appointment for May 17th. Mom's birthday. Should be easy to remember. :)

We left at 9:15.

The appointment was less than 10 minutes but I did not feel hurried, or judged, or ignored. It was perfect. Bug would NOT have lasted longer.

I cried a little at the thought of a damaged Brain Stem. That means there is a VERY real possibility that I will never hear my little boy say Mommy. While that is kinda shocking, I really am OK with it. I am lucky in other ways. He is happy. He is social. He gets his point across. He is barely on the Autism Spectrum and I think we a little PECS, we can get him off of it. It's all about the pictures.

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Morning Update - March 12, 2010

>> Friday, March 12, 2010

Bug has had a good run of no seizures lately. By my count, two in the last 17 days. Not bad at all. One was kinda my fault. It was due to the sedative they gave him for his MRI. They asked:

Has he had Precedex?

Not thinking about when, I said: Yep. He did just fine.

Well he did BUT it was when he went in for his EEG last year. They gave him DEX to mimic sleep and try to illicit a seizure. And it did.

I felt like the world's worst Mother.

So in 17 days, he really only had one. The Dex one doesn't count. It was drawn out of him. I say that to make me feel better, it does count and two still ain't bad.

Last night he received:
8ml Keppra
175 Lamictal
150 Zonegran

Although, this morning I found a crushed Zonegran, so the little sneak held it between his teeth for a few hours before he went to bed. Operation: Mouth Sweep will commence nightly from this moment on.

This morning he is very vocal. Humming and chirping. He is also sick, runny nose, ickie eyes but he is happy. Makes that handshake yesterday really Karmic given the circumstances.

His pupils seem to be equal today, at least so far. Last night they weren't. And it was VERY discernible. Isn't that how it goes. Mom sees it, Doc doesn't, Mom is labeled overprotective and slightly nuts. I guess, I am. A little.

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Well knock me over with a feather.

>> Thursday, March 11, 2010

Primary Children's has done this to me twice. TWICE I have been upset and TWICE they have made it right. View the rant: Here. And the joy: Here.

God bless them.

Screw number 11, they have made it back to number 1 in my book. (referring to Primary Children's US News Children's Hospital Ranking). Been to UCLA. They deserve to be lower.

So, I posted that last, well, rant-with-detail and went to Circle Of Mom's to see if I could be of assistance to Mom's struggling with Epilepsy (I try to be supportive, I know what its like to feel all alone and isolated). I got done responding to a question and the phone rang. Home phone. 6 maybe 7 people have that number so I rush to get it and see: UNIV OF UTAH. Oh goodie, I think, it's the surgery lady!

It wasn't.

Well it was. AND it wasn't.

It was Kris Coomans, Director of Pediatric Ophthalmologist for the Moran Eye Center?

Uh oh, I am in trouble.

She introduced herself and said: I understand you were less than satisfied with your visit today?

Uh huh. But I got better. (didn't say EXACTLY that)

And then I told her what had happened. That I felt like Bug was being ignored and that Dr. Eyehole didn't check to even see if there was any referral.

She listened very politely and even laughed in the appropriate places and then said the most amazing thing:

I have looked at his chart and shown it to Dr. Hoffmann, the Head of Department and he would like to see your son. I know you have already driven up here but if you would like to meet with him before we schedule the sedated exam, he will be more than happy to meet with you.

Dumbfounded I replied: I don't think meeting him would be required, there isn't too much more for him to find out about Bug that isn't already in his medical records.

She agreed it probably wasn't necessary but if I would be more comfortable I could call and they would set up an appointment. With that, she thanked me, apologized and handed the phone to LINDSAY. NOT LAUREN. LINDSEY. Being old sucks.

I liked Kris and I really liked Lindsay. It hearkens back to my previous statement about the EXCELLENT support staff. Best I have ever seen, and between Bug and my own orthopedic problems, I have seen more than most.

Lindsay talked with me and validated me and set up an appointment. March 25th. I told her that I can substitue warm and fuzzy for intelligent and educated any day but I wait for my apointments like any other child and I...

expect the same amount of time. She finished my sentence. Beginning to love her.

Curious, I asked her how she knew I was peeved. I didn't complain to anyone, except the people in the waiting room :).

She said: Oh we google Moran Eye Center and Primary Children's and your blog came up (Bug's blog). Damn. Google is getting better. Used to take days, now...he he, hours.

Oh wow, I said: I did vent there.

Yes you did. Giggle.

I promised that I would Blog again immediately about them making it right. Because they turned me from worried, sad Mommy to happy, there-is-something-to-look-forward-to Mommy.

Thank you ever so much lovely ladies, for tolerating a worried Mother and for putting her fears to rest. Thank you for understanding what it is like to feel left out. And for showing me that Primary Children's is the place for Bug. That he is cared for, and he is put first. Even when he stinks.

And then I ran into the other room: Mom! You are NOT gonna believe this!

I read to her that last post (not editing anything, because it was the truth and I stand by it) and she raised an eyebrow. They are gonna be nice to you after that?

It's not me, it's the boy. He is magic.

Thanks again ladies, you are queens among women and you have made my day. I would hug and kiss you if you were here, good thing you aren't, the place is a mess.

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Dr. Ophthalmology

<< in this picture, can you see the difference in his pupils? Which eye?

The visit? Pfft. Less than impressed.

Bug pays more attention to me than this Doctor did, and Bug has the attention span of a rock. K, that was not exactly true, Bug can spin things for hours. Rocks can't do that.

We got there early because we had to take Glenn to the airport. Wish he had been there but it couldn't be so I went with the little man by myself. I drove directly to the U of U and upon parking and retrieving my little monkey boy, I realized: I forgot his shoes. Sign of things to come. I tried squeezing his toes into Tay's black patent leather Mary Jane's that she left in the car, but his foot was too fat. So I carried him (did I mention he weighs almost 60 pounds, all of it muscle) through the parking structure and into the building. He loved it, I loved it, it was a love-fest.

I went to the Moran Eye Center and it turns out, even though, Dr. Ophthalmology is listed at being AT the Moran Eye Center...he isn't. He is on the third floor at Primary Children's. Luckily it was across the parking lot. Again, gonna have to carry him because of the no shoes thing and oil on the road. Good thing I am built like a linebacker because he is too.


So, I took the little man upstairs to the Cafe because the nice man at the info desk told me the view was breathtaking and the food was spiffy. Who could pass that up? He did not fib. The view was amazing and they had coke in the fountain machine, so hooray! The sandwiches were majorly yummie too...Glenn ate his sausage with jalapeno's really well. But he kept turning around to eyeball the Cheeto's. Ah, Cheeto's!

Once we were done we went to the Doctor, he of which we were REFERRED to see by Dr. Van Orman, almost three weeks ago. It was a little annoying putting my name on a list and then waiting for 15 minutes before we were called up to JUST fill our paperwork. I have never done that before, they usually hand me the paperwork when I sign in. Curious. Luckily they had a playroom for children that was pretty cool. Lot's of things that spin. Kept him busy but not busy enough. RIGHT after I got the paperwork, I began to smell something. Yep, he does not disappoint. Changed his diaper, filled out the rest of the paperwork (also weird since he has been to PCMC a dozen or so times and it is all in the computer) and waited. We didn't wait long.

A nice lady took us back and did the initial exam. She didn't see the Anisocoria at this time. She took his history with it and we waited outside again. Not long afterward we were called back by the same nice lady. As I was carrying him, she said: OH! I just saw it! It's his right eye isn't it?

I turned quickly and said: Yep! Thank heavens! You are the FIRST medical professional to see it! Hooray! I am not insane.

She smiled and took us to the room.

Now, Bug likes to spin things. The most COMMON thing to spin in a Doctor's office is the chair. MOST Doctor's don't mind, heck they even plan for it and buy cheap chairs, and they even admire the speed he builds up. MOST, but not this one. He walked in, Bug had BARELY moved toward the chair and was trying to SIT on it when Dr. Ophthalmology told him he couldn't 'play with that'. So I took him and put him on my lap.

He introduced himself and shook my hand. I thought: I just wiped Bug's nose with that.

He began to talk. I listened and responded. He did the exam...well what passes for an exam when you can't get the child to sit still. He said: I don't see any reason for concern.

Are you kidding? A patient with SEIZURES, suddenly presents with unequal pupils and because YOU don't see it INITIALLY, after trying to chase him with the light, you can make that statement? My first thought: Screw you! I am not making this shit up.

But I listened to him dictate a letter to Dr. V. It consisted of, he present normally, all function of both pupils is normal. I am inclined to not proceed unless directed by Dr. Van Orman to do a more thorough evaluation. And when he was done I said:

Dr. Van Orman already sent a referral over for a full exam under sedation. He asked for it be done while Glenn was having his MRI.

He said: We don't do that.

I said: I guess Dr. Van Orman is not familiar with this type of thing then because he thought you would.

He said: Oh he is, he refers to us all the time. It's that some of the children we see might end up on a ventilator for a long time when they are sedated, and in that case, we do a modified exam while they are under.

Translation: Your kid isn't sick enough, and I don't believe you anyway.

At that he got up to leave. 5 minutes, start to finish, including the dictation of the letter.

I pounced.

I don't run him to the Doctor at the drop of a hat. You see, because he is non-verbal, we are his only voice, his only advocate, he can not come to me and say: Mommy I have a headache, or I can't see well. I have to be VERY attentive and we examine him every day for problems. So when we see something new, something that could be Neurological in nature we bring him in.

He smiled and said: I understand.

The smile said: Whatever you just said, means nothing to me, I am just being polite.

I was pissed.

I saw the nice lady and asked her: You saw it, right?

She blinked, looked at the Doctor and then said: Yes I did.

Good, I responded, a little indignantly.

With that I gathered him up and we left. I was pissed. Pissed enough to say on the way out, loud enough for the people in the waiting room to hear: That was a complete waste of time.

I cried in the car on the way home, vowing I was done with PCMC. The biggest problem is that he LOOKS normal. He is pretty and they see that, they see no tubes, they see no motor impairment, no oxygen machine and they assume it is a minor thing and maybe the parents are over reacting. I have been known to over react at times, but NOT Glenn. If Glenn says he needs to be looked at, Bug goes to a Doctor. And this Anisocoria has us both a little concerned. While I was cursing and building up to a real breakdown because they are ignoring my boy simply because of his appearance, I had a thought:

Fuggem, they are gonna do that test. I have a damn referral. Dr. Eyehole didn't even check.

So I called Dr. Van Orman's office and told Amy that he needed a referral. When she saw that the Neurological Consult was already in place, she said: You are a better person that I am. I would have been ugly.

Made me smile that I had calmed down before I called.

She transferred me back to Ophthalmology (oh whoopee poo poo) and Wes, whom had set up the appointment in the first place, Wes, whom I had TOLD IN CLEAR TERMS, that Bug needed to be sedated to be seen, told me that he had to transfer me to Lauren 585.5817, in case I got dropped, to schedule the sedation. It rang. No answer. I left a nice message, repeating everything twice. And now I wait for her to return my call.

The most important thing was that I swallow my pride and just get Bug seen. I know there is something going on, and we need to find out if it is caused by something we can fix. Yes, I am tired of being put off, but trying to find a new Eyehole when this one CAN do it, would be more trouble. Maybe. We'll see.

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What a night!

>> Wednesday, March 10, 2010

Bug's School/District had a Parent's night.

They hold workshops in different classrooms for different needs. We visited 3.

The first was Assisted Technology, Craig and Dennis were fantastic and we have a list of things to investigate. All of them, I think, Bug will be able to do. Best part is better than half of them are free! Really cool.

Second, was PECS. Picture Exchange Communication System hosted by Tammy. Also fabulous. We will most definitely be trying this out. I had read up about it a few years ago and created something similar to it, but now I REALLY know how to do it. I will detail our travails.

Lastly, we stopped and talked to Drew, Bug's physical therapist to talk about Motor Skills. Drew said that Bug was working on peddling, such as bike riding. Which explains him stealing Taylor's tricycle the other day. She was hacked and he was peddling his butt off. Glenn and I were taken aback...it was the first time we had seen him peddle with real intent.

It's the little things.

Imagine if I hadn't gone tonight? My hope is great. Now, let's just hope I have the dedication. More later.

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10

Not what you think.

Glenn IM'd me and said that Bug's blog, THIS blog is the number 10 blog for Epilepsy according to Networked Blogs. How did this happen? They must be confused. And now I am obsessed with getting him up to number 1. Follow his blog? :)

My intent when I started this was to chronicle his events, his seizures, his milestones and along the way I found I was learning more about Epilepsy and more about special needs children. I might have to coordinate my efforts in finding out what might be going on and build a library here too, a resource for others with Epilepsy. So little is known, and yet, so much IS known but not easy to understand. Maybe we can help.

As cool as this seems, as nifty as number 10 (or whatever)is, it is a fleeting thing, tomorrow will be different. And it was fun while it lasted.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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