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.

He's Weird, Whaaaaattttt?

I wanted to blog this the day it happened, but I couldn't. I can't let it sink in b/c then it might be real. The truth is, I know it's real, but that doesn't make it suck any less. Here's what happened.

Logen & I walk into preschool, happily. He wonders off to play in the kitchen center. I sign him in and walk over to kiss him good bye.
Little girl, age 4 or 5: He's weird
Me: What did you say?
Girl: I said, he's weird
Me: Why do you say that? (My heart is beginning to sink)
Girl: Because, he walks funny and he dribbles {meaning: he drools, CONSTANTLY}
Me: Well, everybody is different
Girl: Yeah, but why is he so weird?
Me: {Oh, God, please carry me out of here without crying. I can't do this! I can't. She's just 5, she doesn't know it hurts me. She doesn't understand}
Me: Well, Thats the way God made him and it's ok that he's like that, he's special. Just like you are special. Everybody here is special.
Girl: Oh, he gets everything wet
Me: Turn and walk away with tears in my eyes. Stare at teacher, not sure if she heard me. This child is not in his class, so she's not been told the "I'm special" story. It's ok. We can do this. Really, we can. It's going to be fine.

And, I think. He's 4 and a half. He goes to kindergarten in 2009. What do I do. If kids are already starting to notice the difference and point them out now, how do I handle them then? Will they shun him? OH, I just don't think we can do this. And, Logen- Logen can't explain to me how this makes him feel. It hurts me more every time I think about. A 5 year old hurt me this bad. How do I deal?????????

Scrunch Face

Parker starting making this cute facial expression a few months ago. It was then we coined the term, scrunch face. Rarely do you catch it on camera. Here's a pretty good idea of what it is. He's such a ham!

 

 

 

 

Van Butt

It looks good! I have before and after van "butt" pictures, but I got my license plate in them (I took them on my phone, so they aren't the best quality). I'll black the plate out and post them. I'm very pleased! And, thrilled I no longer have to drive around with a dinged up silver butt!!!!!

Dawn--- I would love Extreme Makeover Home Edition to roll up in my drive way! That would rock. We have a 'lot' in a subdivision, I think I heard somewhere you had to actually have like an acre or something like that. Hmmm... maybe I qualify for just plain extreme makeover. :p

Me Update

My OB is calling in some sort of antibio cream (kinda like the OTC stuff you do at night, the 1 time at night stuff thats icky and messy). If it doesn't work- I am suppose to call the on call and let them know.

As for the indigestion, I was explaining it to my Momma. She thinks it's an ulcer. The Dr said thats what it sounds like as well. When I swallow, eat or drink- it feels like I am swallowing nuts and bolts. Or the pepper shaker. I can't breath when I lay down, it hurts terribly!

So, thats whats up now--- more drama on the 'us' front. It feels never ending. Today is busy- I'm leaving work, going home to get the check from AIG to pay for my van's repairs, taking the rental van to Enterprise, they'll take me to get my van, I'm hoping to tan. I think Adam is going to a movie with a few guys tonight (the new Superman one).

Hugs- Have a great w/e!!!

People Update

**Parker has been fever free for over 24 hours. Yay :) Whatever he lasted went away quickly. He's a rotten mess. Yesterday on the way to school- he's in the backseat saying "momma" over and over. I turn my head and say, "what baby?" "He grins really big and says, "Momma, Ut Baby?" I was thinking, you little turkey! Hes a copy cat :) He said it about 4 times and giggled and giggled!

** Logen's doing pretty good, I can't wait to go to St Louis next week and hear what the Neuro has to say about his seizing!!!!

** If you're a male, you may not want to read on- just so ya know. Kinda yucky. ** ~ I need input. I'm at my whits end with this one. WTH do I do? I go to my OB August 12, but I'm dieing here, seriously MISRIBLE! This is my 2nd cycle (in a row) that I have gotten a yeast infection. A bad, bad one. I took a diflucan Monday and Tuesday night. I did a 1 night OTC tx last night. I am hurting so bad I want to cut 'her' off! I told my mom last night I would rub dog poop all over me if it meant this would go away. It's got to be a hormonal thing, b/c the last one happened a week before my period and was thankfully gone by the time I started. This one happened a day after I started. Besides a boob job, I can't think of much worse than bleeding and yeast at the same time (those 2 make childbirth look like a breeze! I told you this hurts!) I'm thinking something is whacked out with my hormones which in turn is throwing my pH off which if causing the "natural" 'down there' bacteria to grow. I've always been one to get yeast easily, but this is a little rediculous. Nobody should get them with every cycle. Anybody have any suggestions? I know these are common during pregnancy as well. And, I have had major indigestion, heart burn (so bad, I took 6,000mg of tums, 2 zantac last night and still had to sleep sitting up b/c it wouldn't go away! And it's still here!!!), and gas lately- I bought a test and am taking it tonight. Bleeding means nothing to me, I bleed through both of my boys pregnanies, more so than I do on my periods. I don't think I could hold a pregnancy though. You can fit 3 of my fingers in my cervix now. Anyway, theres my ramblings--- need help with the yeast infection ideas. I'm misrible.

House Update

The house is a mess! The garage has been runout with TOYS! We had to take just about EVERYTHING out of the boys rooms and put it in there. Friday the water restoration guys came in and cut a few holes in the wall to get to the pipe and to beable to ventilate the place. Logen's room got to fans and Parker's room got 2 fans and a super big dehumidifier. The bathroom between their rooms got to house the hosing to the dehumid and the plug to one fan. They tore out the rest of the carpet that we had left in the boys rooms. They were there daily to check the 'wetness' level and were able to pull the noisy things out Monday. The plumber came on Monday and fixed the pipe.
*** The problem ~ The outside spicket froze over the winter and split, causing the water to flow back into the house ***
The water works great now. We have no flooring, well we have concrete in the boys rooms. We are waiting to hear what insurance says the carpeting in their rooms is valued at so we can go floor shopping. I think we will install it ourselves and try to match it to the wood in the living room and halls. It can't be the exact same b/c they re-designed that style shortly after we bought it.
I feel as though I'm living in a contruction zone and it's just caos!

Know A Child With CP Around Toronto?

If you know any CP mommy's near Toronto Ontario~

Tell them to print out this flier and get on down to the Ontario Federation for Cerebral Palsy office! They are giving out FIVE free toys to every child with Cerebral Palsy who goes in there this Friday and Saturday!!!!! WOOHOO Brett Carleton and his family donated a TON of toys to them to give out.

http://www.ofcp.on.ca/pdf/toy_flyer.pdf

A Sick Kid :(

Parker is Sick. He's been feverish since Saturday, but mean old Momma took him to school today anyways (b/c I had to take the van to the Collision cntr and meet the plumber at the house). I got a call around 4 (I was on my way to get him anyway) that his temp was 103.9!!! So, we went straight to the Dr. He's got a virus, I don't remember the name of it. His throat is rather red, he's not been eating much guess that explains it. If he's not fever free by Thursday at the latest, then I'll take him back in for labs. It's always something.

Dumpster Diving!!!!

How friggin' cool am I???? I am heading out to dig in the dumpster?! Seriously. The water restoration people forgot to take pictures of the shelf with mold on the bottom. Adam chunked it in the dumpster this morning. Guess who got nominated to go dig it out and photograph it? Yours truely.

I'll post the pictures. Lots to update about. Interesting weekend here. Nothing to serious.

On The Seizure Front

Since we all slept in a king size bed last night like bugs in a rug (it's all the hotel had left and by the time we got there, I didn't want to leave)- we noticed, Logen twitches ALOT in his sleep. He's never slept very well and typically wakes up a few times, but we don't usually sleep with him as he's been sleeping in his own room. I think he's seizing in his sleep. I'm certainly going to bring it up. It makes sense-- twitery movement, night waking? What do you think?

More Drama At Our House

For sake of insurance claims, I am not sure how much I can post- so I'll be somewhat brief until it's paid for. :P

So the other night, we walk in and discover water, lots of it. Parker's carpet is soaked, starting in the closet and outward. At first, I'm thinking as I ponder over what PJ's to pull off the hanger- good gravy he's pulled his diaper off again and pee'd the big one! Then, I'm like, no way--- this is way to big a pee for that little guy. Adaaaaammmmmm.... we have water problems! He slowly walks to the front of the house and is like beepity beep beep!
So last night, we get the grand idea to pull the shelves out of his closet. Mold, we drag it across the nice beige carpeting, leaves a nice big black streak. Carpet wasn't salvagable anyways, but this adds a nice touch. The trim is wet the bottom of the drywall is wet (mainly in the closet). We start pulling up carpert. I'm having a nice chat over text with Trina (Hannah's Momma from BBC) and discover this we can most likely claim on home owners and we shouldn't be doing overselves. I've taken pictures along the way, not to worry!

I call and make a claim. I tell that stupid chicka that I have 2 kids, 1 of which has major breathing issues (Parker had croup last winter like 4 or 5 times!) in the winter and allergies. Our insurance actually has him down for Asthma since he gets Xopinex (Something like like!) breathing treatments. She was not terribly nice and told me they'd get back to me in a few business days. Trina, my mom & I didn't like A FEW DAYS very well. So I called back and told them they needed to authorize a hotel (After calling my Dad to read him my policy and make sure this was covered, he used to sell insurance). They did page an adjuster. He called me back quickly and told me to get out of there- they would cover our hotel and any meal expenses sense we would obvioulsy wouldn't have the facilities to cook. I am suppose to call his cell phone this morning and they will send out the mold and water people to take a look at the damage. Not sure if they will come in and clean it up today or what will go on. We've already torn up the carpeting for them.

Oh, on our way out last night- Adam went into Logen's room and noticed the corner of his floor was also wet---- guess his room will get new flooring as well.

On a lighter note- Logen was taken to school in a pull up today, b/c I forgot to pack him shorts. I also forgot to pack extra diapers for Parker. Luckily there were 3 in the van. Glad he didn't have a major explosion! Forgot the soy milk, so he had to drink juice. I seriously think when they put in the implants, they took out my memory--- I have had major remembering issues since my boob job!

This morning I feel like my nickname should be "wannabe-superwoman"--- "Bring it on people! Apparently, the world thinks I can take on multiple things at once!"

4th of July Pictures

Topsy Turvy~ Will you PLEASE Pray?

My Papa Dave (grandfather) was taken to the VA on Saturday with chest pain. They thought they would be doing open heart then. He made it to Sunday at 10am before he was emergently taken to the OR. He made it through 7 hours of surgery. He's 77, a diabetic, and considered to be 'brittle.' He seems to be doing well at this point. His dementia has kicked in, he was doing great before Saturday. He started having pain and all of a sudden he just didn't know what was going on. He's giving the hospital staff lots of cr*p. That's typical for him, and not such a bad thing :P My Mama June is handling this pretty hard, as are my step dad, Aunt Lori, and Aunt Debbie. It looks like his recovery will be a long road. My Mom (who is an RN, and has worked MANY years in ICU and at a heart hospital) said he would be in the hospital for quite some time.

Please say prayers for Papa Dave and our family. God has been amazing and allowed him to stay with us when we thought it was his time to go, we have been truely blessed.

For Your Laughing Pleasure

When my hubby got home and saw how I was cleaning the kitchen, he said it was to funny not to share. I do my chores in heals and ankle weights. Works the legs :) I get some funny looks when I walk out to the mailbox like this to. Esp when I'm in Adam's boxers, and t-shirt, heals, and ankle weights- now that would have been the picture to post!

News Link

Here's a link to the death I blogged about below. I couldn't link the story in our local paper b/c you had to have a log in (be a subscriber). This is mainly about the killer, but The Estes are mentioned, as well as the other victims.

http://portal.gci.net/news/read.php?id=16288877&ps=931&lang=en

My Sweet Logen

Nana bought the boys new hats to swim in (around Mother's Day, and I'm just now uploading these!!) Logen LOVES the hats... He's so stinkin' cute!

"Girly" Issues

Here's one of those things half of you really don't care to know, but I'm going to post anyway... lol
I've posted on this issue before, here's a mini update- Last I posted my cervix was opened at like 2cm, I checked it last night at it was opened to 3cm. It must have done that in the last week. (I seriously check this nearly everyday, I'm a spaz!) I should have gone in for my yearly in May, I just keep forgetting to make the appt. So, I will call today to schedule it. Dr H told me at my checkup in January that if it keeps opening, that pretty much means I cannot carry another baby to term and possibly not even hold a pregnancy. So, today I just feel like a big 'ole failure. A woman's body is designed to carry children. And, even if I had decided I didn't want another one, I WANT to decided that NOT my body make the decision for me. Thats not right. I know, I need to look at the bright side, God gave me 2 beautiful, healthy little boys-- I still can't help but feel like crap. Blah. Maybe thats how I feel, just "blah".

Unexpected Death, Please Pray

I talked to my mom last night and got a sad story. An SLP that used to work for her (Jamie, whom I have met and found to be a very delightful person) lost her parents the night before.

We don't know alot about what happened, we will have to wait for the investigation and autopsy reports. Her parents were going to St Louis, Missouri (where we take Logen to the CP Clinic). They stopped in a town along the way to stay the night in a hotel. We've often done this as well to break up the drive. They were murdered. They were found a quarter mile from the hotel behind a dumpster. Their dog was also murdered. She told my mom is looked like a blood bath. They had tried to put them into the dumpster, but may not have had the time and just left the 3 of them behind it. Their car was found down the street a ways.

In my opinion- travelers would be good victims. They carry credit cards, cash- and people know they are gone, so they wouldn't be expecting them home. My mom & I talked about how many times we've walked outside in the dark at a hotel in that area without paying a lick of attention to let the boys run off steam before bed. My mom would go outside by herself to smoke, never thinking another thing about it. We've gone in hotels along the way to check rates without looking at our surroundings. I would think the people doing this obviously had to enjoy it. Why else would the kill their dog to? How sick is that?! Would you please pray for Jamie's family? I can't imagine loosing my parents period, much less to a crime such as this.