To the Clinic

We went to Cleveland's Cole Eye Institute today to have Naomi's eye's looked at. Last time we went it was because she was acting like she couldn't focus. That ended up being Depakote. Once we weaned her off the Depakote that behavior stopped.
But when she was on absolutely no medication she was flinching. She would close her eyes and turn her head quickly like something was flying at her. So I figured, lets rule out vision!
Two years ago when she had her last eye exam she was supposed to see Dr. Traboulsi but he was called out of the country for some reason. She was seen by a resident and another Dr. came in and double checked and she was fine then too.
So today was our first visit with Dr. Elias Traboulsi . In true Cleveland Clinic fashion, he was wonderful! Again we were first seen by another Dr. and he thought every thing was fine but Traboulsi came in and wanted to double check.

I'm so used to holding Naomi down. I held her in my lap and when he was trying to look in her eyes she was screaming. I held her chin and at the same time reached up and pulled down her eye lid with my thumb, with out him asking me to do so. He moved to the other eye and I did the same. He stood up looked at me and said "you're hired!". That made me and Bill laugh.

After he told us everything was indeed fine he asked me if they'd found an underlying reason for her seizures. Was it mitochondrial? I said no we'd had testing done. He asked me if something had been done and I said I wasn't sure but she see's Dr. Parikh and he has ran all the metabolic and mitochondrial test. He said the test he wondered about would be called a metabolic panel. I remembered that one, and assured him it had been done. He said he's a geneticist. I love how their Dr's double check everything.

Who thinks they'll go to the eye Dr. and get a suggestion about neurology?

He said the flinching could be part of her seizures. I definitely think it's something neurological or maybe a better way to say it is it's part of the sensory issues she has.
I think it's interesting when she was taking no drugs she was doing this. At the same time she was seeming to be picking up more things. Then we started the Zonegran and lots of things seemed to slow. So maybe it slowed something in this too? Who knows. It's all a mystery!

I do know that other times when she's come off of meds I have seen her look at things she views every day like she has never seen them before in her life!
I'm ready to stop the Zonegran, her seizures are predictable right now. But there's a few things about the meds I hate. One just being getting her to swallow them! It's a fight!

Well that was my day. Hope everyone else did something other than go to the eye Dr.

You just never know....

Today in church Isaiah raised his hands and asked for prayers for this little girl and her family. He's such a thoughtful little guy. We talked about it with him and he's never mentioned it. But apparently he's been thinking about it.

Valentines From the Nursing Home

When I opened up a card from a family friend I almost cried to see these two Valentines inside!
These are to my kids from Jeanette, "the Crayon Lady".
Jeanette was a friend of my grandparents. She had a stroke in 2008 and had to move into a nursing home. She remembered it was my birthday July of 2009 and called to tell me Happy Birthday from her room. She was moved to another facility and no one told us and she called my parents to make sure we all knew.
She has ALWAYS sent us cards. She sends cards to me and all my cousins, plus our kids and probably most of our spouses. Bill has always said it's a shame Jeanette remembers his birthday every year, but his mother often forgets. It's not just birthdays though. It's every holiday under the sun!
My cousin and her daughter just went and visited Jeanette last week and her hands were really crippled up and knowing that makes these even more special!
Jeanette worked at a factory that made crayons, markers and water colors. She has supplied us since I was young with more of all of that than you can imagine.
Before she went to the nursing home I stopped with Naomi to see her at her house. Out she comes with 2 grocery bags full of crayons and such. I said "do you want me to choose which ones we need". "OH NO," she said "they're ALL for you!"
Jeanette is such a blessing to our family!

Making Contact

The other day I was going through my Dad's old photo album from Vietnam. There's lots of old family photos in there too. People sent him their school photos when he was over seas and he'd stuck them in there. There were some I had no idea who they were. One was a man in a military uniform. At first I thought it must be someone he served with and the guys name was on the back. So I called my Dad and he said that it was someone who lived below his grandparents and his family and Dad's family had all gone to church together.

I got on the Internet and found out that this man's father had just died in January 2010 and it gave the town where this fellow lived, in Texas. It also gave the residence of his siblings. I looked him up and got an address, but no phone was listed. So I looked up his fathers residence in North Carolina where 2 of his sisters lived and there was a phone number. I gave the number to my Dad and he called it Tuesday night. The sister that answered remembered Dad and said "do you know how long it's been since I've seen you!" . It's probably been almost 40 years. She gave my Dad her brother's phone number in Texas and when Dad called he got an answering machine. He didn't leave a message.

So Wednesday night my parents were home watching the T.V. when the phone rang and Dad answered it. It was the man in Texas. He said his sister had called and told him Dad was looking for him and he was tickled to death! He and Dad talked for a while. Both finding out the other had cancer. The man told dad to go to the Veteran's Administration and get an I.D. and tell them about his cancer. The man in TX retired from the military and he said the agent orange used in Vietnam is known to cause cancer and the number one type they're seeing is prostrate cancer.

The guy got Dad's address and is going to write him a letter.

This fellow also had a sister. They called her "Cookie" and according to my aunt Cookie was BAD. She always got my aunt in trouble and she'd do wrong and my aunt would get whipped for it. My grandpa whipped them with an old miner's belt too! Which is a regular belt with lots of little belts and buckles all the way around it, ouch! My Aunt says she'd going to look up Cookie and go beat her up for all the stuff she did as a child. I found Cookie! She only lives about an hour from us, so she better watch her back. There's 5ft and 90 lbs of trouble coming her way!

UGH

Well Naomi had therapy today. She had 4 seizures while she was with the Speech and PT who see her together on Tuesdays. She was tired today, and hopefully will take a nap soon! Her appointment on Tuesday is 8:30, bright eyed and bushy tailed! Not so much!
Four is about what she usually has for that first 1/2 hour then she goes to OT and is better, having 0-1. Today however after one of the seizures the speech therapist noticed that her smile was lopsided for a brief time afterwards. I've heard of Todd's paralysis but we've never seen it in Naomi. I'm thinking that's exactly what this was. So now I'm watching her closely and after her seizures making sure that everything is where it should be.

I'm also marking this as strike 2 against Zonegran. Strike one being that she is less vocal since being on it. I'll be talking to the nurse soon and will be sure to mention my grievances in order to try to get Naomi back off meds sooner rather than later.

Dancing at home

Naomi, at home dancing and "singing" to The Song off of the Alvin and the Chipmunks Squeakquel CD. She loves it. At the beginning she squints her eyes a few times. She been doing that since December. I don't think it's seizure related so we're going to the eye Dr. at Cleveland Clinic's Cole Eye Institute later this month for a check up.
It's always something!

Zonegran

Tuesday Naomi started 50 mg of Zonegran twice a day. This is the dosage we've been working up to. She's only been on the meds less than 3 weeks, but we've seen nothing. We lowered her calories the same time we started her on the Zonegran so who knows what is what at this point! She isn't falling all the time anymore. Some of her seizures look like dizzy spells, but we've seen this on the diet so it's not enough to make me want to continue with the meds one minute more than I have to. She gets agitated very easy. I tried to pick her up and move her yesterday and she laid down on the floor and had a full on fit! Also, she had been babbling constantly. Ball, bear, making up her own little sentences of "bee bee bee bee ball bee". It felt like she was trying to communicate, but that's gone. We're back to "yea-yah" for about everything. That is really frustrating, because now I wonder if the babbling will come back when the meds are gone or will she have to start fresh with that!

We lowered her calories as I said, so maybe that's helping some. The number of seizures she's having are about the same. They are more spread out and lighter in intensity though, well not all but most. There is no rhyme or reason. Sometimes she'll have stronger seizures in the a.m. and then they lighten up. Sometimes they're lighter in the a.m. then in the evening they get stronger.

She's not wanting to eat at least 1 meal a day. She eventually does eat it, but not in a timely manner. She's been in the other room working on an eggnog drink for breakfast about an hour now. Yesterday it was her 3rd meal she didn't want. Zonegran has a side effect of loss of appetite but we've seen this with the diet also. I just hate having 2 things going on at once.

The Zonegran comes in tablets that I can pull apart and sprinkle the contents in food and give to her. That doesn't work with her though. It's easier just to get her to swallow the whole pill, then you know she's gotten it all. She can spit it out and I can put it right back in her mouth until she swallows it. I've put the whole pill in some sugar free jello and she was taking that well for a while. Now she screams and gags on the jello, so I just let her spit it out and as long as the pills stay in there we're good!

Monday she'll have blood drawn to check her diet related blood work and also the Zonegran level. So hopefully we can talk to the Dr's office and know if we've gotten her to a theraputic level and it's not working, so lets back off!