Over the next few weeks, Andy and Clare Dungey will be posting about their visit in the states and what they think of our country.

So far, they have posted twice and I must admit, their stories and pictures are amusing! Everything from a “should have been $3.00 hat” to extra large Alabama Mud Pie, I am looking forward to hearing more about their holiday!!

http://littledungey.blogspot.com/

Well, the Presidential election is well under way!

I must admit, before today, I was not as excited about the election. Our choices were Obama or McCain.

Well, today, that has all changed. In my wishful thinking, What is Normal? has made the presidential spotlight!! Oh yeah!

Presidential hopeful, John McCain has chosen his running mate, Gov. Sarah Palin of Alaska.

Gov. Palin gave birth to her son Trig in April of this year. Born with Down’s Syndrome, she recalls hearing the news as many of us have about our unborn child.

JUNEAU, Alaska — The results of Alaska Gov. Sarah Palin’s prenatal testing were in, and the doctor’s tone was ominous: “You need to come to the office so we can talk about it.”

Palin responded, “No, go ahead and tell me over the phone.”

Receiving the Down’s diagnoses, Gov. Palin admits her world went bleak for a moment or two, but quickly she recovered to see the miracle present to her.

“I’ve never had problems with my other pregnancies, so I was shocked,” said Palin, a mother of four other children. “It took a while to open up the book that the doctor gave me about children with Down syndrome, and a while to log on to the Web site and start reading facts about the situation.”

Later, when telling her husband, he said:

“We shouldn’t be asking, ‘Why us?’ We should be saying, ‘Well, why not us?’ ”

Now, like many parent’s faced with an uncertain future with a child who has a disability, Gov. Palin tells people how she sees her son.

“I’m looking at him right now, and I see perfection,” Palin said. “Yeah, he has an extra chromosome. I keep thinking, in our world, what is normal and what is perfect?”

I am SO excited now about this election. Rest assured, we parent’s of children with disabilities will be justly represented in the White House the next four years!

I won’t make this a political blog or anything of the sorts, but November 4, 2008, I am asking you to support John McCain and Sarah Palin for the United States presidency!

So, What is Normal? has made Presidential history, even if Gov. Palin didn’t know about this blog!

I’ll still take it!

To read this article in full, please click here.

In an escape from my reality, I took the kid’s down to Luna Pier.

Luna Pier is a lake side community with a quaint town and even better people!

Our friend Dave and Mayor Mary, live in Luna Pier and Dave who we affectionatly call LunaPierCook (LPC) runs the Luna Pier Doghouse. A lake side grab and go, if you will.

Head over to LPC’s blog to see what we did yesterday!

Thanks for the GREAT lunch!!

Then don’t read ANY further, you’ll thank me later!

Yes, I am NOT sleeping well!

Last night, I found one of these nasty little critters flying around Knoah’s room!

AAAAAAAAGGGGGGGGGGGHHHHHHHHHHH!!!!

I had been sitting in there with the lights on while he was sleeping and had just turned them off when this thing came out from God knows where.

Will managed (my knight in plaid pajama’s) to get rid of it and then, THEN, tonight, Jacob was going down stairs and he and Hannah came running back up yelling “BAT, BAT, it’s in the parlor!!”

I told them to shut the center hall door and looked at Will.

3 minutes is all it took!!

Now, once again, I won’t be able to sleep.

See, when I was pregnant with Knoah, about the time we found out he had Achondroplasia, the four of us had to under go the PEP shots. PEP shots or postexposure prophylaxis vaccine is used when there has been a suspected exposure to a mammal that may have rabies. About this time 2 years ago, we found a total of 3 bats in the house over the course of 4 days. Don’t know how long they had been sleeping in our rooms, but I freaked!

What fun that was! NOT! 5 shots, in the arm to prevent us from developing rabies.

So, needless to say, bats and I DO NOT GET ALONG!! I, at this point am half tempted to gather up the kids and sleep in the car.

Don’t think I won’t.

My personal message to the bats finding their way into my house:

Please, PLEASE, stay away!! I don’t like you! My kids don’t like you! I don’t crawl up a tree to roost where you roost, do I? Please respect my domain and I’ll let you eat all the mosquitos in my backyard! Promise! You can have them ALL, I don’t like them either!!

Watch out Hasselhoff!

Here comes Knoah…

We live on the banks of Lake Erie. We are lucky enough to have Sterling State Park within a mile of our home, so we can go camping and such. This year we opted for taking the kids swimming. The kids loved it!! Here are some pictures of our adventures!

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Every once in a while, I like to “compare” Knoah’s activites to what is common in other children his age. Even though I know better, I just want to see how he fares…

Month 21

Most toddlers should be able to . . .

Start to learn up to 5 or more words per day

5 or more PER day!! WHAT! I am still trying to teach him “milk”.

Walk up stairs with some assistance

Nope, ain’t happening. He can crawl up them effectively enough, so I’ll pass him.

Make structures out of toys or blocks

He does this WELL!! He can stack five or more blocks during play! Good Job!

Some toddlers will probably be able to . . .

Start to learn up to 10 or more words per day

See above remark!

Show good signs of bladder control

If by bladder control you mean he realizes he’s peeing on the floor when he is diaper less, but makes no effort to to let me know he did so until I walk in the room and he has his hand in it…like he did it on purpose, sure.

Throw balls overhand

He throws them side handed, he passes!

Open doors

He does very well! Open, slam shut, open, slam shut, open, scream because his finger got caught in the door while slamming shut. Check!

Some toddlers could possibly be able to . . .

Name people and pets when shown a picture

Actually naming people? I can’t even get him to say “mama” voluntaraly, but the kid will scream for dada before dada even pulls into the drive….”scuff” Semi check.

Form short but complete and understandable sentences

Understandable? No. Screaming at the top of his lungs because he’s upset he was to no, yes.

Walk down stairs with some assistance

There will be no “walking” down anything just yet. Tumbling, falling, rolling, maybe, but walking, I think not.

Open and close doors

He will open it if it is cracked open and he will close it. Check!

Not bad Knoah!! Not bad! You look like your doing well!

Of coarse, no one expects you to be super toddler, even though taking a giant leap off the couch won’t get you any closer to that goal, your doing well!!

Which brings me to my other boy, Jacob. He’s starting to posture. I mean, if he is with his friend’s, he’ll come at me with chest pumped out, acting all hard and tough, thinking he’s going to tell me, in front of his friend’s how it is.

Um! No!

So, yesterday he did this. His little buddy was watching though the door and Jacob comes walking through the house saying “MOM! We NEED to talk!” As he is stomping through the house.

So, I meet him half way with a smile on my face and bent down in-front of him and said in my quietest, sternest voice:

“Jacob, listen very carefully, because I am only going to repeat this ONE TIME. First off, don’t you EVER think your going to approach me in that tone of voice and think I am going to respond kindly. Secondly, I understand your friend his here and to save you the embarrassment, don’t you EVER think you are going to TELL me what I NEED to do. Lastly, do not EVER think you are to big for me to insert choice phrase , because trust me, next time, I will make sure you and your friend’s know you were taught how to respect an adult. Your little friend’s may talk to their parent’s that way, but you sir, will not. Have I made myself clear?”

Jacob proceeds to tell me something about what he wants to do in a week, it has nothing to do with him playing with his friend. He apologizes and he goes about his merry way. Unscathed and untouched.

He is almost as tall as me now a days. A foot more and he will be eyeing me! I told him from from the time I popped him out of the womb, he will not be disrespectful to anyone! Including me! I just don’t think it has sunk in yet.

You know and it wasn’t even the what he wanted to tell me, it was the way he came at me. Like, he’s a man and he will control the situation. I think not. I do not take lightly to someone, especially a man, approaching me thinking he’s going to be disrespectful. I will not allow my son’s to grow up that way.

It has to be the hormone’s. Tell me it’s a phase!

One of the issues of having a child with a disability is making sure to have insurance to cover the massive medical tests and bills that come with such a child.

During Knoah’s first hospital confinement, in the flurry of paperwork, I filled out paperwork to get Knoah Medicaid. I don’t remember doing it, but he does have it.

So, when Will became unemployed, we also became uninsured. Although, to be fair, Will was told he would have insurance until the end of September. Then the having insurance ended up being a part of the “Release” they want him to sign. So, effectively, we are uninsured.

Illness and catastrophic medical crisis’s as most of us know can occur at anytime. One moment your breezing along life, then next your sitting in the emergency room waiting to be admitted to the hospital for one reason or another. All the specialists and doctor’s your child has seen in the past vanish and the torment of having to re-educate new ones seem daunting and cruel.

Now this raises the question, if you or your child is uninsured, what do you do?

Apply for Medicaid. Medicaid is a Federally and State supported insurance program that helps medically needy individuals attain the medical support they need.

Good health is important to everyone. If you can’t afford to pay for medical care right now, Medicaid can make it possible for you to get the care that you need so that you can get healthy – and stay healthy.

To find out if you or your child is eligible for Medicaid, please visit this website.

To find out what programs your state offers, click here.

In Knoah’s case, he is covered by Medicaid and State Children’s Health Insurance Program (SCHIP).

Having at one time, three insurance policies, what our primary didn’t cover, it would fall to Medicaid and what Medicaid didn’t cover, SCHIP did. However, there are pitfalls to this.

In the case of Knoah TLSO brace. Our insurance would only cover 50% of the brace, which left approximately $1400.00 to be paid. Since Medicaid doesn’t cover Orthotics, SCHIP covered the rest, leaving us with no out of pocket expenses.

This is all fine and well, but where do you start? You need to visit your local Department of Human Services or DHS or Department of Health and Human Services to fill out the paperwork. From their they will guide you through the steps of the information you need to bring or supply them with to help them figure out what services your eligible for.

Now, for my rant…

I am SO not looking forward to finding new doctor’s for Knoah. Medicaid should cover most of his original doctor’s, but what if they don’t? I am going to project here:

Imagine…walking into the examination room, waiting for the doctor to come in. After what seems to be hours, they walk in. The examination starts with routine questions, the first of which is, “so, his chart says he has Ach..On……

Me: Achondroplasia

Doctor: Right, what exactly is that?

Me: Blank stare

Me: Explains Achondroplasia and physical features

Doctor: Yes, I have read about that, blah….

Exam starts

Doctor: His head is rather large, has anyone ever mentioned Hydrocephulas?

Me: Tilting head to the side, determining what I want to say:

A. “Did you actually hear anything I just said or are you assuming just because I’m only a “mom” that I have no clue about my child’s condition or what complications can occur?”

B. “Hydro…what? He’s 21 months old, of coarse I wouldn’t let him participate in a sport like that! That sounds dangerous! He can’t even swin yet!”

Me, wanting to opt for a refined version of the two…

Me: Yes, we know but according to his Geneticist’s his head is average amoung achons. I do have a question though, you don’t think water entered his ears and is now stuck in his head, do you?

Oh the TERROR of having these conversations again!

Not fun!

Several hours later….Well, there is good news, I just got off the phone with Dr. Pauli’s assistant, Casey and we are good to go!!!

WOO-HOO!! At least one of his doctor’s will not change! Such a relief!

Candi left a comment that I think will be helpful to some readers:

One thing I would add is that it seems that if you are anywhere near a teaching hospital, they will usually help you out and care for your child when achondroplasia is diagnosed whether you have the ability to pay or not. It seems that the doctors that really know about dwarfism and learn about the condition truly care that these kids get what they need above all else, including payments. There can be a little difficulty when it comes to testing, etc…because unlike doctors, hospitals want their money….but the doctors themselves seem to have no problem helping these kids with what they need. So, if your readers feel they are at a dead end and can’t seem to get help - find a teaching hospital with a doctor who treats kids with dwarfism….even if you have to drive a hundred miles to do it. They will find a way to help you.

Candi
YaYa to Bryan

Well, it has been a few days since Andy and Clare went off to Chicago. They will follow their plans to Las Vegas to see Candi and then off the Los Angeles and home again to Ipswich in the UK.

I can not tell you how incredibly blessed I feel to have had them as guests in my home!

Both, Clare and Andy are amazing people! During the short time they were here, I could immediately tell Andy is the quiet one and Clare is the “wild” one. We took them to Rendezvous downtown after the Jazz Festival and Andy just about lost it when he saw the assortment of ice cream they had. I said to them “if you think that’s spectacular, I should take you to Baskin-Robbins, home of the 31 flavors!”. Instead, we opted for Maggie Moos, which Andy found just as delightful!

We showed them around our little hamlet and on Sunday, we had a party for them! Cat, Sarah and Sue brought their families and everyone enjoyed themselves talking the time away! I want to say THANK YOU to each of their families for helping with the food. (Actually, Cat mentioned bagged salad is the greatest invention ever and I have to agree, however we did concur that each bag must come with it’s own scissors to open them!) We had so much to eat, I don’t think anyone left hungry! Clare did ask why Sloppy Joe’s are called Sloppy Joe’s and not really knowing what to say I answered, because their sloppy. LOL

We talked about the difference between the UK and America, traditions and expectations.

One thing we did realize is the women of the US are much more willing to dance in public than the UK. It is hard to explain, but from where we were standing, one women in particular, I will say was REALLY enjoying herself at the Jazz Festival!

Knoah took to both of them after the expected timid moment, but toward the end of their stay, he was crawling all over them!

We did talk about Theo and as expected, I cried my eyes out. I admitted I am still not over his death and don’t know that I ever will be. They brought me a lovely book about the Suffolk Coast, which is where Theo’s ashes are scattered. It is a beautiful place! Andy and Clare hold the coast near to their heart and I see why!

I really cannot put into words what actually meeting them was like!

Here I sit, in front of a computer, receiving an email from a women in the UK and she explains she is having a baby and we know how the story goes, to less than a year later, I actually have these two people who I have never physically met, sitting in my home. It’s a blessing! I feel like we have been given a gift from God. A chance meeting because we both had been told our children had skeletal dysplasia. I wish I could describe what I feel thinking about this. It is so emotional, so much further than anything I would have ever expected, yet, it’s real.

We never know what tomorrow will bring, but we can be sure that it will be nothing less than amazing!

Clare said that despite all the heartache their tragedy has been that she would do it all again if it meant leading her to people who would become lifelong friends. That to me is a testament as to the kind of people they are!

I feel so incredibly lucky to be where we are right now! Will and I realize how blessed God has made us. We are because each one of you are in our lives!

I’m babbling, so I’ll show pictures!

Andy and Knoah playing with the Thomas the Train set they bought for Knoah. He LOVES it and it even has an English accent, how cute!!

Notice Clare’s face? She is getting first hand Hannah experience. Hannah is sucking on a Lemon.

I only ask, “Why?”

At Rendevous, Andy was quite excited to see all the flavors! He had a hard time choosing one!

At the party! The house was full of friends and love!

All my babies riding Sandy!! Unfortuntely, I didn’t get one of Andy or Clare riding it.

Kaela riding into the sunset!

Owen “Yep, just another hard days work in the field!”

Knoah “Howdy, buckeroos! Let’s ride into town and have us a cold one and met some lady friends!”

Adian “Shucks fellows, I got tillin to do! The sun’s not down just yet! We got a good 2 hours before it’s dark!!”

Clare getting Knoah dressed after his bath!

Clare giving Knoah some lovin!

Two tired boys ready for bed!

Just hours after watching Andy and Clare off to Chicago, I am still reeling from their visit. We had an AMAZING time!!

The video will blackout during the slideshow, just click the “X” on the top right hand side to finish viewing the show!!

Less than a month ago I found out they were coming and what a time we had! I am going to sleep on it a night but wanted to post some pictures of their visit! I know their family is wanting to see the pics, so here they are!

I miss them already!

Yes, I am counting the hours until I pick up Andy and Clare!!

Clare called me this evening and said everything is on schedule and they will be flying in Saturday afternoon! I am SO excited!! It really does seem not real. I mean, Clare and I have been emailing each other for well over a year now and in just a few hours I will get the pleasure of seeing her smile when she holds Knoah!!

I will probably be a bucket of tears.

I am trying to debate, do I take Knoah to the airport with me or leave him home? The only reason I would opt to leave him home is just in case their flight is late. Since we are no longer allowed to enter the airport, we would have to wait in the car. AND, Knoah hasn’t been the ball of sunshine he normally is. That’s another post, but we will just say…

In a big voice “If he bites me again…” Echo, Echo…

Will asked me if I was nervous and I’m not right now. I mean, I am in the sense of what if they don’t like me?

Oh, who am I kidding, their going to LOVE me! Sorry, I had to throw it out there.

So, I guess I better get back to cleaning! We are having a party of Sunday for them. All my babies will be here!! Owen, Adian, Hannah and hopefully Kaela, but Kaela’s momma doesn’t answer emails promptly, so I will have to go up to A2 and drag them down here. Sarah, is this what you want me to do???

Okay, enough…going back to cleaning

Will post lots of pics later!!