HAPPY BIRTHDAY JOSHIE!

Happy 5th Birthday Joshie!!!!! Hope you have a terrific day. Maybe I'll get your goodie mailed to you before you turn 6. Eck... 6! I cringe b/c that means my little monkey will be 6 next year to.

You Know You Have A Child With Special Needs When...

* You compare ER's instead of grocery stores.
* You compare your child's oxygen saturations.
* You view toys as "therapy".
* You don't take a new day for granted.
* You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
* The clothes your infant wore last fall still fit her this fall.
* Everything is an educational opportunity instead of just having plain old fun.
* You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
* You also don't mind if your child goes through the house tooting a tin whistle.
* You fired at least 3 pediatricians and can teach your family doctor a thing or two.
* You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
* You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
* You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
* You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
* Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
* You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else
will be there!
* Fighting and wrestling with siblings is considered PT.
* Speech therapy occurs in the tub with a sibling.
* When potty training is complete, you take out a full page public notice in the Washington Post.
* When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
* You keep a daily growth chart.
* You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
* You phone all your friends when your child sits up for the first time, at age two.
* With a big smile on your face you tell a stranger that your four year old just started walking last week.
* Her medical file is several inches thick and growing.
* You have a new belief.....that angels live with us on earth.
by Carol AnCel

Useless Baby Things

I was reading blogs this morning, and came upon a lady's that posted on how useless her highchair was- it was nasty and stored every kind of crumb imaginable. I thought I'd steal the "useless" idea and create my own list of useless baby things. If you make one to, besure to comment- so I can come read yours :)

* The Crib, didn't use it with either child.
Logen slept in the porta crib thingy next to me, then eventually migrated into our bed. When I had Parker, Logen moved out and into his room. Which, with the seizures is only half a joke. He still ends up in bed with us. Parker started in a bassinet, which swallowed him b/c when he came home is was just under 4lbs. He slowly moved to our bed. Why, b/c I was so afraid he'd stop breathing or the other 10,000 things the NICU warns you about before you are 'allowed' to take your child home. It was to hard getting Parker here! He still sleeps with me (and Adam). With the construction and mess in our house, I'm not even going to stat working on getting him in his room. Lets get flooring back in there 1st.

* Bottles. Bought a ton of them. Every kind made and they all ended up in the trash. Parker took 1 in the NICU, but wanted only momma when he got home (we were forced to nurse every 2 hours for calorie intake/weight gain, so that was pretty rough). Now, we realize Logen didn't take a bottle b/c he couldn't. He still couldn't drink out of 1 if he tried. We order a special sippy from a therapy catalog at 20 bucks a cup.

* Infant bathrobe & house shoes. Seriously, why would a non-mobile critter need a robe or house shoes? I dress my kids and put sockies on their feet. They now wear house shoes, at 4.5 and almost 2.

I went blank. I think those were the most annoying things we had, in my opinion of course.

How fun!

A fellow mama I meet on the CP board in which I visit is flying in to hang out with us this weekend :) Hannah's momma, Trina is coming to play :) YAY!
Here comes trouble!

Seizure Update, St Louis appt

Here's the St Louis appt update, ya know the one I should have posted last week. The news just sucks, so I'm avoiding it. How you can avoid it is beyond me, but I'm working on it anyway.

* Neuro is still NOT convinved Logen has CP. {Yea, me neither. How many other almost 5 y/o kids with CP walk, but can'talk. Not a single word, just ahh noises. Not for lack of trying though}
* His seizures pose a FATAL risk. Yes, I said FATAL. They occur on both sides of his brain. If left untreated and he were to have a lengthy seizure (we are talking 5 minutes= lengthy) If he has a lengthy seizure- this can cause chemical toxins to be emitted into the blood and pose a fatal risk. We are to call 911 immediately following a long seizure. We were instructed not to attempt making it to the hospital. It can take up to 15 minutes for us to the nearst one, and apparently that is to long of a wait for him.
* We left with 4 new prescriptions. FOUR. Not one, but 4.
* He *might* have reflux, so we are trying prevacid. I think this will get us no where. I am almost sure it won't. And his SLP pretty much agrees. He drools b/c he can't work his lips. He just can't do 'lip closure'. He doesn't control the drool. It just spills on it in buckets. He aspirates. How can you talk when you can't even swallow without keeping liquids out of your lungs.
* His med's (and those of you with kids on seizure meds, please comment or email about them!) are:
1) Zonegran- 2x a day. We mix it in applesauce since he can't swallow it
2) Klonopin- As needed for any seizure that is less than 5 minutes, we are to call the Neuro and ask about giving it 1st.
3) Diastat- (liquid valium, given rectally) to be given if he has ANY seizure lasting 5 minutes or greater. Call 911 immediately.
4) Prevacid- before breakfast
* Logen's seizures aren't that easy to spot. Thats an issue. His are typically ones where his head falls slightly backwards (but he does this LOTS, not just during a seizure. You can see it in some photos on the blog), his eyes just 'stare', and he's non-responsive to his name, etc. Problem is- we aren't sure if he's got behaviorial issues or just seizes alot. B/c he's non-reponsive frequently. He has seizures while he sleeps. He wakes up crying b/c of it. They scare him. Sometimes he will walk to our room in tears, and sometimes he stays put until (usually Adam) goes to get him.
* EVERYBODY that keeps Logen needs to know this by heart. We can't take the chance.

~ I'm not trying to be negative. I have high hopes that we get this med in his system and things will start to change. Please pray about this. Please. Thanks for the prayers already. You don't know how much we appreciate them.

* This morning was dose 2 of the daily med. His SLP said he laughed like a hyena for 30 minutes of the session and was fairly lethargic the remaining 30. I figure it is the zonegran. She said it could take a bit for it to get into his system.
* Neuro wants to see him in 1-2 months. They are working on getting him in. She said it's nearly impossible to fit kids in, but they'll do it.

Mom, Dad, & Boys

Our Room

The actual rooms pictures were taken right before checkout- that means, it's already trashed :P

Boys In A Window

Our room was great! The boys loved the view :) Adam stood them on the window to catch a look out. The lighting wasn't great for picture taking, but cute pics none-the-less!

Hotel Pictures

Angels Among Us

I keep replaying that song in my head. "There are angels among us, sent down to us from somewhere up above..." This applies to us in the last 2 days. We've been blessed and I have to share it.
Tuesday I was still searching for a cheap hotel in St Louis. Knowing we were leaving this moring (btw- we are here and safe!). I'd been searching for months trying to find a good deal. An amazing man stepped in and gave us an ultimate gift.
Instead of just $ (b/c anybody that knows me [refer to above] knows that I will find cheap. You must give me a gift if you want me to have something nice. I buy nice for my kids, and others- but slack on myself). I was really hoping to find a hotel for the 2 nights we would be here and only spend like 100 bucks. We just don't have much more. This trip was unexpected. We've already filled up the gas tank 2x (in one day!) at nearly 4 bucks a gallon. My minivan's gas milage bites!
Ok, so back to my story--- he books us a room. Not at a cheap-o place that Jessica would book where you bring your own softscrub to clean the shower. He books its at The Chase Park Plaza for 2 nights. And throws in some gas $. More than I ever ever ever thought just a friend would do. Just something purely nice.
I get a text this morning from a dear friend. She said she had something for me and needed to stop by on the way to work. So, I'm thinking (since she's also my hair lady- some fun new hair thing) No, she hands me money. She's says, I know it's not much- but we wanted to do something for you guys. Enjoy McDonald's or buy 1/8th a tank of gas. haha
We arrive today and I tell the lady that we are here for medical purposes (this is me, trying to get another bargin). She types something in, looks up at me and says- I have upgraded you to a 1 bedroom suite. I thought you could use the space.
In the last 2 days, we've been more than blessed. I will be making some very nice thank you cards (and baking a goody for John). Words cannot express our gratitude. It's wonderful to know that when something like this comes up, when you have no control over it (Ex Logen's seizures)- you just know you have to do whats best for your child and you have no clue how you will financialy make it out of this medical trip-- there are friends that step in and take over.
There are some amazing people in our lives. There truely "Angels Among Us."
Thank you John. And Thank you Ann & Jason. We love you all. And we cannot say THANK YOU nearly enough.

**Logen's appt is at 8am, I will update tomorrow.