And So It Goes

I have watched this countless times over the last two days.
It depresses the heck out of me, but I love it!
It's not the reference to a lost love, it's more than that. It's loss in general I guess.
There's a part where he says " Everytime I've held a rose it seems I've only felt the thorns". That makes me think of kids like Naomi. There's so many thorns some days I don't stop and enjoy the rose.
There's so much worry. Stupid stuff like meals, bowel habits, medicine weans (after a month I'm sure we're out of the woods), her falling. The stress of her screaming when I change a diaper, comb her hair, put her helmet on. Sometimes I am so sick of the screaming, there's no reason for it. But I understand she can't communicate and that's frustrating. But still, the screaming feels a bit like torture some days.
So here's what's new or not so new
We dropped her Zonegran to 25 mg in a.m. on April 28 and so far so good. She still takes 50 mg at night. That dosage didn't change. I'm supposed to call anytime now and see about dropping another 25 mg. But we are going to a graduation out of state and I really don't want to be in the middle of a med wean while away from home. One good thing is taking away just 25 mg also rid her of the "can't sweat" side effect. I've had her out in 80+ degree weather for over 20 minutes and there was no sign of over heating.
Naomi's stroller is not here yet. It is litterally on a slow boat from China :) When we ordered it they were manufacturing the strollers in China and have since moved it to USA. Which is a nice change! But it's taking FOREVER. 3 weeks ago they said it should be here in 2 weeks. But no word yet! I can't even remember how long it's been since it was ordered. I know I thought we'd have it by the end of April and that didn't happen.
School is almost out! I am so happy! Isaiah has 2 test tomorrow and I wish that was it, but I know he started a new chapter in Social Studies on Monday, so I'd think they'd test on that at some point. They are running out of time!

Fashion Babies

I heard something on TV yesterday that really irritated me.
We all know Sandra Bullock adopted a baby. Well, she's being criticized for adopting a black baby. Some say she just did it because it's fashionable. Seriously! People are so stupid! Can they not just be happy that a baby found a good home? And "Fashionable"???? Is that really how they want to put it?
Immediately what sprang into my mind was Paris Hilton and her stupid tiny dogs tucked under her arm. Then Brittney Spears and every one on TV seemed to have a little dog, the tinier the better, tucked in their arm, in their purse etc....
But a baby?! As a fashion accessory? Come on!
I was telling all this to Bill last night and laughed and asked "When will a baby in a helmet be fashionable? Cause I got one of those!". I'm not into shoes or jewelry or any of that so that's my only hope of ever being fashionable!
Come on Angie and Brad! Strap some hockey helmets on a kid or two and help my cause along!

Farewell

The after effects of EEG glue (when the Daddy can't take anymore screaming and says "that's enough")


We said good bye to Dr. Tuxhorn yesterday. She said "I'll carry you all with me in my heart" and I just about lost it! I am such a baby. I swear I am still mourning the loss of her today! I woke with a terrible head ache and was extremely nauseous. I know it was from the stress of yesterday and from crying and trying hard not to cry!

First Naomi had her EEG done. We saw the woman who has twice put leads on her head in the monitoring unit. She recognized Naomi and said "Weren't you just in the PMU?" I laughed and said October 2008! She said she recognized Naomi's face but was terrible with names. I told her I can't even imagine she remembered her at all! Naomi warmed right up to her, so she must not remember her! LOL!

We had a really good experienced person put the leads on. Which is nice when your child screams through the whole thing! Eventually she gave up the fight. No more twisting, kicking, scratching etc..... but kept on screaming.

They caught 2 seizures on the EEG. The paperwork says "atypical absence seizure". She stiffens when she has them. A tonic sort of motion. Her whole body doesn't stiffen, mostly her legs and she may slow her breathing, but never stops breathing. They're quick too! She had one in the exam room and I saw it coming and before I could say "there's one" it was over. Tuxhorn said the EEG shows improvement. Instead of spikes every so often the only spikes were when she actually was having a seizure. So good news, I guess. Or we'll take it as good news!

Tuxhorn feels Naomi would be better served staying at Cleveland Clinic. She doesn't know anything about the ketogenic program at Rainbow Babies. Doesn't even know if they have one! So we are set to see Dr. Lachhwani in July. We've seen him before, as I think I mentioned. He did rounds in the PMU when Naomi was starting the ketogenic diet.

One great thing has come of this! We get Martin back as clinical nurse! WHOOOOOPPPEEEEEE!! He's Dr. Lachhwani's nurse and when Tuxhorn told me that I was so happy! I told her the nurse is more important than the Dr. We converse more with the nurse and the nurse gets things done and relays messages for us. So I'm thrilled to have him back. I think he may have OCD about his job! But that's what I want!!

Tuxhorn said we can go ahead and take away one pill from Naomi's Zonegran dosage. She said give it a month and if everything goes smooth call Martin and see about going down again on dosage. We had a couple 80+ degree days and I noticed that Naomi was warm to the touch and had more seizures than usual. Probably because she can't sweat on the Zonegran, so I really want that gone!

Dr. Tuxhorn mentioned Banzel and Vimpat, neither FDA approved for children. She said if she thought either of them would surely help rid Naomi of seizures she'd push us to try them. She doesn't feel that way so is fine with us weaning off meds. Nothing has made a dent in her seizures and some have even made them worse.

Naomi got her Vitamin D level tested. So yes, that was 3 blood draws in one week. Although this guy was a pediatric phlebotomist and that makes a huge difference!

New Neurologist

You know I LOVE our neurologist Dr. Tuxhorn. But she's leaving Cleveland Clinic! Boo Hooo!

But word is she's going to be the new head of pediatric epilepsy at Rainbow Babies Children's hospital. Which is on Euclid Ave. in Cleveland just like Cleveland Clinic!

When I first found out she was leaving I was just really hoping she'd stay in the U.S. and not go back to Europe. So to think she's just going down the road is great news.

I still don't know if she'll take patients at her new position. Rainbow Babies is part of University Hospital, which I think is part of Case Western University. BEAUTIFUL campus by the way!

Naomi has a routine EEG on Tuesday then sees Dr. Tuxhorn later in the day, so we'll no more then.

I really hope we can just move with her! We've seen her since November 2007 and I really don't want to switch. Just in case I've already decided we will see Dr. Deepak Lachhwani if we HAVE to stay at Cleveland. He did rounds once when she stayed in patient at the pediatric monitoring unit and had a very nice bedside manner. So I'd be comfortable with him. But still really hate to think of loosing Tuxhorn.

Pet Peeve

I have a new pet peeve. When people put their relationship status as "it's complicated".

One I know for sure is actually "unhappily married". Another is "unhappily divorced". Both should be single!

Why do they put anything? You can leave it blank.

Another funny is what people put under "interested in". I guess that could be taken any way. Some put friendship, men, women or both. I wonder if those who put men and women actually know what that sounds like.

I've learned to hide people on Facebook and I love that.
I wish real life was like Facebook. Where you can just delete the connection if they offend you or you just don't like what they say.

Kindness

Isaiah got an invitation to a birthday party yesterday. He's been talking about it. Saying that this boy was having a party and he was invited. We kept telling him we'd need something in writing. You know how kids are! This kids parents could have been planning a family only party and here he goes to school and invites everyone! But yesterday he brought home the invite. We had thoughts of going away for Spring break but nothing has been written in stone yet. This boys party was 2 days into Spring break. I told my parents that any plans they may have thought of would have to work around this. Isaiah really wanted to go and this boy is a little odd. I think he gets picked on. I know even Isaiah has lost patience with him before because he's sort of immature and whines a lot, that sort of thing. But Isaiah did bet him a birthday card and some Pokemon cards and wrapped them up himself and gave to the kid. I told mom I thought Isaiah better go because with the timing of the party other kids may be out of town, no to mention he's not Mr. Popularity.

My mom said Isaiah told them one weekend that at lunch the kids were picking on another little boy and saying he had cooties. He'd try to sit down and the kids would block him and say "no you have cooties". Until Isaiah spoke up and told him he could come and sit by him. I guess the teacher said something to him, praising him for being kind to that boy when no one else would.

He's such a good soul!

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!