Sunday, July 27, 2008

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

Sunday, July 20, 2008

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?

Friday, July 11, 2008

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

The begging for food....

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


The faces

Tuesday, July 1, 2008

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!