March Already?!

Naomi turned 4 on March 7!

Well, haven't been on here in a long time!

February was pretty uneventful. Mostly because we were snowed in! It was the snowiest month ever! The first really big wave came February 5 and there is still spots of snow out on the ground now! The kids used all 5 of the snow days that are incorporated into the school schedule. They also had several 2 hour delays. Naomi missed lots of therapy. She goes on Tuesday and Thursdays and that seemed to be the popular day for a new storm systems to blow through. Usually we get all our really bad weather from the north. This year I think every bad storm we got came up from Texas! It was weird! The last one to go through went past us and didn't drop much snow. Then it went out to the coast turned around and came back and dumped snow on us! The weirdest thing ever!

Naomi has a new therapist. The local hospital where she goes for therapy cut benefits on 400 of their employees! Her OT was caught up in that and had to quit pediatric therapy so she could pick up extra hours doing therapy at nursing homes where she'll make more money and be able to afford to pay the COBRA insurance. Her husband was recently laid off, she has a 6 year old, a 6 month old that they adopted in Aug. after fertility treatments and going through 3 different adoption agencies. Now, she's pregnant, due around the babies 1st birthday! So being with out insurance is not an option! I really hope they find a break somewhere!

Naomi turned 4! Time has just flown by! We all went to church and there were tons of kids there. That tickled her, she likes watching them. I just see a lot of kids 1/2 her age twice as developmentally advanced. UGH. But then I look at her and can't even imagine her at a normal development! There is a lot of little quirky things we'd have missed if she was "normal". She's growing like crazy! She's definitely had another growth spurt. I put lighter weight pants on her that used to fit fine. Now they look more like capris!

Since starting on Zonegran or cutting back calories she's evened out on her seizures. She has about 30 a day and most of them are very light. Some just look like she got light headed for a split second and it's passed. Last week I was feeding her 11G of pineapple at her 2nd meal of the day. I noticed her seizures seemed to increase some so I took the pineapple away after a few days and sure enough! They went back to how they had been before! I then realized when she seemed to be going downhill in January she was eating pineapple then too! So, is it Zonegran? calorie reduction? or having no pineapple?! So frustrating!
She's been faithfully wearing her helmet. She doesn't mind wearing it but screams when putting it on or taking it off! Oh well, scream away little girl! It's saved her head more than once already!

Well, maybe I better stop. I may think of something else and squeeze another post out of it!

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!