Mama

America's Top Hospitals

This report from US News & World report came out mid July rating the top hospitals in the country. They had an overall ranking and then scored by specialty. Owen receives care at the Unversity of Michgan which was ranked 13 on the overall list. It was interesting to read where U of M stood as far as the categories that Owen will need concentrated care: orthopedics and neurology (they didn't rank genetics). In the neurology department, there are 5Michigan Hosptials ranked in the top 50 (and 4 of them are in Detroit!)

I thought you would be interested to see where your hospital ranks. Give me feedback!

Us News & World Report: America's Best Hospitals

Congrats Doug! / The Dress Mess

Congratulations to my buddy Doug who got married last weekend! Doug is one of my best friends from high school and we've managed to remain friends for the 12 years since high school. God! 12 years. That's almost painful to say. Almost as painful as it was to pluck the grey hairs out of my head this morning. I'm not really sure how long I've been grey. It's only been recently that I've been unable to afford quarterly dye jobs at the salon. On the bright side, I figured out what my natural color is! But I digress....

The wedding was a blast! Definitely one of the best I've been to since...well, my wedding (which, by the way, is an entire post in itself)! Ending up in a hotel room playing drinking games until 3 in the morning is a good night. Ending up in a hotel room playing drinking games until 3 in the morning with your friends that you haven't seen in a while - is a great night! Congratulations Doug and Heidi! You pulled off one hell of a party. Oh yeah...congrats on that whole lifelong spiritual binding thing too!

High School buddies
The gorgeous bride Heidi
The groom and my friend Doug
My gorgeous husband Dan
My other best friend from high school Matt.
Doug, Matt and I have taken this same picture a few times. One at each of our weddings and one at graduation. I can't find any of the other ones!

So we've established that the wedding was off the hook (isn't that what the kids are saying these days?). What we haven't talked about is the nightmare that preparing for the wedding became. Notice the dress I was wearing? Cute huh? It was the dress that almost wasn't (easy boys).

Since Owen was born, I've only been to a handful of events that have required dressing up and I've somehow managed to find an acceptable outfit for them all. For this wedding I had to buy a new dress. None of my pre-baby dresses fit appropriately. Notice I said " didn't fit appropriately" not "didn't fit". I was able to squeeze the dresses over my child-bearing hips and I was able to zip them up. The final result? Think Britney Spears meets Paula Abdul's wardrobe. It was all kinda bulgy and too tight, out of date and just plain inappropriate. It seemed like a no brainer to get a new dress.

Nobody told me, however, that there are no good dresses out there. Even worse, the ones, I would have settled for were not in my size! I went to my staple dress stores: Macy's, JC Penney's, Neimen Marcus (outlet, of course), Marshall's, Jones NY, Ann Taylor. Nothing. Then I venured beyond the safehouses to the Dress Barn, Burlington Coat Factory, TJ Max, New York and CO, Express, Sears, Liz Claiborne, Group USA...anwhere that I thought may sell a dress, I went to. I must have tried on over 100 dresses and was not tempted to buy one of them. Finally, as I'm walking through the mall in tears on the phone with my husband after a 5 hour shopping failure, I see...wait for it....Forever 21. If you are unfamiliar with the store, just revisit the title. Forever 21. Something I thought I wanted to be once, but now conjures images of strobe lights and Apple Pucker. Anyway, I thought "What the hell?". As a last ditch effort, I will see what's going on in the land of early 20's fashion. If you haven't guessed already, by god, I found a dress. From Forever 21. And it fit! I did make a mental note to tell everyone it was an Evan Picone but I suppose I just blew that huh?

OK, so I've got the dress handled the night before the event, now I just need - a tan. I used to go tanning year round before I worried about wrinkles and cancer. OK that's a lie. The only reason I stopped tanning is because I can't find the time anymore, otherwise, I'd be all over it (I look skinnier when I'm tan). Anyway, the day of the wedding, I decide to pick up a self tanner that seemed good. I get it home and realize that it's a lotion that builds a tan over a few days time.
"Oh crap!", I think, "I don't have a few days, I have a few hours!".
So I come up with an idea. I will just apply the lotion 3 times to achieve the tan I would have in 3 days! Brilliant right?! My body won't know the difference, the color will develop in a few hours and I'll bronzed and beautiful by the time they say their I do's. Uuummmm....That's not exactly what happened.
What happened was that over the course of the wedding I ended up 3 distincly different colors. To prove my point, please reference exhibit A


To make things worse. When color started to develop, so did the streaks and all the spots I missed. I had this orange crap all over my hands, and let me tell ya, it was like glue. I looked like a poor mans version of Donatella Versace.
If you are laughing hysterically at me right now, don't worry, I'm not offended. I find it kind of funny myself. There is no real point to this story other than to humiliate myself so enjoy my suffering!

Well Charted Territory

Thanks to everyone who offered their stories and thoughts about the last post. It was especially nice to hear from Julie (finally!) It's nice to feel that I'm not alone. Sometimes you throw these things out there and are never sure if people will think you are insane or brilliant. Although, I always love to think it's the latter, I'm hoping it's somewhere in between the two.

Owen had a well check at his new pediatrician's last week (our previous ped retired) and here are the latest stats.
At 17 months old, Owen is 28 3/4th inches, 22.5 lbs with a head circumference of 52.5cm. Just to give a little perspective as to where that puts him on the growth charts I've plotted him so that you can get a visual!

*Copyright Information*
These charts are copyrighted by the American Academy of Pediatrics

Ok, what you are looking at here are the charts for males with achondroplasia. The charts also include average height curves so that you can plot simultaniously. The grey area is average height and the unbroken lines are the achondroplasia curve. The height and circumference is in centimeters and weight is in kilograms. Here are the links in case you would like to examine further
Health Supervision for Children with Achondroplasia.

Owen seems to be falling in about the 75th percentile for height on the achondroplasia chart.

His head size is a little below the 50th percentile in his chart and off the pin heads - ahem - I mean average size baby charts. Sorry average height babies, that was a cheap shot!

I'll be honest. I don't really know what is going on in this chart. He's kind of in the middle so I'm assuming that's good. You're on your own with this one.

There were 2 shocking parts about Owen's measurements. #1 - He kinda had a growth spurt! His last measurement at 14 months was 27 inches. Almost 2 inches in 3 months is significant considering that he has grown 10 inches over the span of his entire life. Shocking fact #2 - He has only gained 5 ounces since March. He's thinning out! This is something I never thought would happen. OK, let me rephrase that. I'm not saying I thought he would stay his wonderful squishy self forever, I just thought the thinning out growth spurts were reserved for average height kids. At this point, I've pretty much gotten used to his growth progressing by fractions of inches so anything over an inch was a pleasant surprise.

In other news, I finally made an appointment with Dr. Pauli. Dr. Pauli is the former Chairman for the LPA Medical Advisory Board and commenly acknowledged as the doc du jour for little people. He is based in Wisconsin but has satellite offices in Akron, OH and Grand Rapids, MI. We will be seeing him in Grand Rapids sometime in October. We got the chance to meet him at the National Conference and thought he was great! He was actually surprised that there was an infant with dwarfism in Michigan that he hasn't seen!

Other upcoming appointments: Sleep study re-do in September. His Dec '07 study was inconclusive so we are doing it again. I should say, Dan is doing it this time. Once was enough for me! We have another MRI in October. His first MRI showed some narrowing of the foramen magnum and enlarged ventricles. Our neurologist recommended have another MRI in 6 months, so we will go back to poke around a bit. October will also be his first real orthopedic appointment. We had a consult in May, but will go back for X Rays and a full exam in the now very busy upcoming months.

I know I promised more Drew and Owen pictures, but I left my camera at my cousins so they will have to wait. I can however, tide the picture-lovers over with shots from our outing at the Grand Blanc Splash Pad!

Splash pad buddies, Drew, Owen and Blake

Fear itself?

I must apologize for the lack of posts lately. My sister Anne and Drew have been in town for 2 weeks and I've been spending every spare minute with them. I of course will post plenty of pictures from the visit soon. Tonight though, I have different thoughts on my mind

Before Owen, I never realized how much height gets brought up in converstation. Whether it be in a descriptive context or in as a reference point to a story, I now find myself finely tuned in to the subject when it comes up. I fear that discussions may veer off into negativity about shortness and/or that someone will drop the M bomb. The cosmic irony of my fear is that the M bomb always comes out of nowhere.

This weekend Dan and I were with friends and the discussion of someone's height came up. I sat there bracing myself for a derragatory comment but it never came. Just as I started to relax again, one of our friends stated that he wished he had little midgets to bring him his beer. POW! I felt like I had been punched in the gut. Thank God for Dan. As in previous intances, I froze up while my husband handled the situation perfectly. He looked at our friend and said, "You mean little people right?". He said it in such a way that meant, "Bro, do you realize what you just said?". That's all it took. Our friend realized his mistake.

It must be said that our friend would never, ever intentionally hurt us or Owen. He knows Owen and the situation and has been there to support us the whole way. It was a foot-in-mouth comment that was in no way meant to be hurtful or mean. But even knowing that, I couldn't help feeling a little undone.

I'm not sure what it is with me and and that word or why it conjures up such emotion. Luckily, I'm getting a better at handling it and each time I'm able to compose my self a little more quickly. My desire to control my reactions is mainly due to my husband. I think he knows that sometimes people are just unaware of what they say. If we respond too strongly, we risk alienating our friends by putting the focus on our reaction. If the goal is acceptance of Owen and our family, alienation is not really the way to go. That Dan is a a pretty smart guy huh?

Beyond that, I sometimes feel guilty getting up on a PC high horse. There were times when I was not always a spokesperson for sensitivity. I now realize that at some point, I surely have offended someone with an ignorant comment or remark that I thought was funny. I am now mortified that I would have ever been insensitive to differences but I know that I too have never meant to purposely hurt anyone.

It's funny. You never know what people's stories are. A few months ago, when the a guy we had just met started talking to Dan and I about midget tossing, do you think he ever would have thought that we might have a son with dwarfism? Of course not! He felt horrible after we stopped him and let him know our situation. I supposed I would like to give people the chance to say the right thing which is why I should explain rather than get upset.

I wonder though - will the fear ever go go away? When I go out with Owen, will I always dread comments and stares? Owen increasingly draws looks but right now, it's more of a "I know there's something different about that kid, I just don't know what" kind of thing. People don't have time to judge when they don't know what they are dealing with. The older he gets the less he can hide it. How will I react when people react to Owen's dwarfism?

The point is, I can't keep fearing what might happen. That's not a way to live and it's not the proper way to teach Owen self-confidence. Our aforementioned friend apologized profusely and we of course accepted with no hard feelings which is how we have to keep going. I have to keep plugging away and learning to truly let things go. I wonder however if the fear will always still be there? Does anyone else have the same thoughts?

These are a few of my favorite things....

The begging for food....

The bod...
Budda belly
Muscle man arms
Baggy flesh colored sweatpants


Kisses!

The faces

LPA National Conference 2008 Report (The conclusion)

I feel like I'm on the same track as "No, Seriously, I Really, Really, Know What You Did Last Summer." This post is meant to help the 2009 first time conference attendees. I'm not going to call them "tips" as it makes me sound like an expert which I by no means am. These are just things I learned and/or will do next time I go. So with out further adieu...

1. Give yourself time to register and explore. We registered right before we attended a workshop and didn't feel like we had time to catch our breath and figure out what was where.
2. If they offer a tour of the facility - TAKE IT! Dan and I wasted hours, yes hours, navigating the maze they call the Renaissance Center. We had to go down a floor to go up and up to go down. It was exhausting! I'm sure the tour would have helped us get our bearings.
3. Take advantage of the workshops. They are free! We attended the Family Reception, the Newcomers Reception, the Orthepedic II medical workshop, the Diagnosis Specific: Achondroplasia and Hypochondroplasia workshop, the Parent Meeting. Dan attened the Guys Only meeting in which a panel discussed issues relating to gender and dwarfism (they had a female only also). I wish I would have attended the General Meeting because they go over some specific Conference Information.
4. Go to the fun stuff! My mom and I went to the talent show which was a blast. I wish I would have gone to the Casino and another dance. As I mentioned in my last post, the banquet was great too!
5. Spend some time at the DAAA games. It was the highlight of the week for us. Despite working at the arena that houses the Pistons and Shock, I haven't seen a live basketball game for, like, a year. It was fun to watch everyone compete and I met a ton of parents. I can't wait until Owen can start. My only regret is that we didn't make an entire day of it and were only there for a few hours.
6. First timers - apply for the Kitchen Scholarship! Yeah, you can get money to go to conference! I completely missed it and I was SO BUMMED when Catie, Sarah and Tonya all walked away with checks. Aarrrggg...
7. Prepare questions for the workshops ahead of time, especially the medical workshops. Dan and I didn't write down specific questions (even though we had some) and ended up forgetting to ask some important things.
8. If you go to the banquet, sign up for a table before going to the dinner. We registered for the banquet, but didn't realize you had to sign up to sit at a specific table. We ended up getting a table, but it would have been nice to sit with some of the families we became familiar with throughout the week.
9. Make "business cards". My husband actually said to me before we left, "You should make cards with your blog address on it." In hindsight, that would have been a brilliant idea! Next year I will make a card with all my "stats" on it (name, location, Owen's age & diagnosis, blog address, email address, picture) and people could contact me.
10. If every single person who's going to conference doesn't read this and take the above suggestion (which I highly suspect is what will happen), bring a small notebook and pen so you can write down other's information. There are so many people I met whose info I didn't get simply because I had no means of organizing it. Thre are some people I would have loved to stay in contact with.

That's all I've got. Tonya, Catie and Sarah if you get a minute, you should share your suggestions too. I'm sure you all have different tips to help. I hope I don't sound like I'm trying to be a Conference Know-it-all! Hopefully, the next year attendees can benefit from our experience!