MRI

Last Wednesday, Owen's achondroplastic rite of passage finally came! The MRI. We were lucky enough to have our consult scheduled on the same day, meaning we would get the results right away.
There were no big surprises for us. I knew what they were going to tell me before they said it. Everything looks good, but there are a few areas to watch out for. Owen's foramen magnum (the opening at the base of the skull that allows fluid to drain)has closed a bit and at 50 cm (19.5 inches), his head size has spiked on the charts. Also, his ventricles had enlarged since his first MRI at birth. This means that there could be some cerebrospinal fluid trapped in Owen's brain. All these symptoms point to a risk of hydrocephalus so our neurologist wants us to keep an eye on it. Simply put, hydrocephalus or "water on the brain" means that there is an abnormal accumulation of fluid in the brain. This could cause problems from clumsinesss to learning disabilities. The common treatment for hydrocephalus is a placing a cerebral shunt into the ventricles of Owen's brain to help drain the fluid. Our neurologist, Dr. Garton, was not concerned enough to take any action but wanted to see us back in 6 months for another MRI (Blue Cross should love that!).
Dr. Garton takes a conservative approach when it comes to shunting. He feels that kids with achondroplasia are shunted to early and too often and prefers to watch and wait. Dan and I appreciate this. We don't want to go mucking around in Owen's brain if we don't half too! The down side is that while waiting to see how Owen does, his head could keep getting bigger where a shunt would slow the growth. Once again, however, Dan and I would rather buy bigger hats then have an unnecessary shunt put in.
We will have to watch motor delays, numbness of the arms and legs (how the hell will we be able to tell that?!), obvious pain, clumsiness (hmmmm, we may already be there) and other signs that something may be off. Luckily there are no restrictions for him. He can still go to PT, play, walk and do everything he normally does. So all in all, pretty neutral news. Like I said, it's exactly what I expected. I have seen a growth in Owen's head but not any worrisome symptoms, so I suspected that this is what they would tell us. Dr. Garton did notice his lumbar kyphosis (cuvature of the spine), but didn't think it was bad and said it will most likely go away as he starts bearing more weight. We have made an appointment for an orthepedist in mid May, so we will get some more info then.!
Arrggg...I totally forgot my camera that day so I can only show you the latest pictures!

This was after the MRI. They put him under a general anesthesia. Hmmm...do you think it had any effect??


Last Thursday, it was Farm Day at the school Owen goes to for PT....He made some new friends!
Owen -that's one big...rooster!

4 legs good, 2 legs bad!

Suddently craving mint jelly...

Owen found his favorite animal!

What a difference 17 days makes!

No ER trips so far this week! It is only 1pm on Monday however, so I suppose my jubilence is a little premature. Owen does have a nice fresh bruise on his forehead from head-butting the floor (not really sure if it was on purpose or not) but he's OK. Our physical therepists asked us a while back if we would like a helmut for Owen now that he was beggining to walk. We laughed and told them it wouldn't be necessary...Suffice to say we are rethinking this offer! How many injuries before social services comes a knockin'?

Owen is just picking up steam like you wouldn't believe. We've affectionately begun to call him "The Druken Sailor", as you will see below. Hopefully he won't start cursing like one too, like his buddy Preston. LOL!!

**Note: 10 points to anyone who can figure out what I've been doing with my week of unemployment by listening to the background noise. Hint: Do the names Mr. Jay and Nigel Barker ring anybells? Hahaha!! More on this subject on a later post.

Owen Van Gogh / Hulk Owen

Sooo....
Owen has certainly kept us on our toes lately. Last week was he was stung by a bee (Damn you Jerry Seinfeld!). He was fine and handled it like a champ. There were no signs of an allergic reaction and the swelling had gone down by bedtime.

This weekend, after a fun filled day of playing and hot dog theiving (see below post), Owen projectile vomited his entire lunch all over the back seat of the car. My mother also happened to be in the backseat and got the brunt of it (love you ma!). Luckily, his head did not start spinning and once again Owen was a trooper. He was fine by bedtime and all I can figure is that nitrate sticks + my little boy = one big smelly mess!

Our 3rd adventure happened on Monday. Let me preface this story by saying...it has been mentioned by another mother who I will not name (OK, it was Tonya) that she may be jelous of Owen's burgeoning walking skills. Methinks that this will change your mind, unless you enjoy spending 6 hours getting your little boy's ear stiched up. Ah, yes...we've had our 1st ER worthy walking related injury. For those of you counting, this is our 3rd total ER visit in 6 months (flu, croup and now stitches) and the way Owen's little personality is developing, I doubt it will be the last. We are currently looking into crash helmuts (seriously).

Owen fell while taking steps on his own and sliced his ear on the metal part of a glider. It got quite a chunk. What really get's me about this kid is that, it didn't seem to effect him in the least! I'm not kidding you, while we were waiting in the ER he was in a better mood than he has been in weeks. It's as if his crankiness was located in the cartilage in his upper ear and his injury sliced it out. Either that or I'm going to start scheduling playdates in the Genesys Triage waiting room because it's apparently so much fun!
Again - Owen was fine! He required 3 stitches but other than that, can resume normal work/play activities. Or can he? Yesterday, he fell again while walking during physical therapy, bit his tongue and started bleeding everywhere. It was minor however and compared to the rest of the week, is hardly worth mentioning! I swear, this kid is going to be the death of us!
On a fun note, Owen's favorite new thing seems to be wrestling with his dad and the cat. He is going through a big "Daddy" phase right now and takes great pleasure in climbing all over him. If you've seen the video of Owen chasing the "At!" with such enthusiasm, you would really enjoy seeing what he does to the cat when he catches her! For her part, Lily (our cat) is very good with Owen and has only bitten him a couple times.

Future LPA Board of Directors

A great gathering of genius took place on Saturday. It was a day filled with profound discussion and a deep meeting of the minds. Oh yeah, the mom's came too! Haha! Through this crazy world called internet blogging, I have discovered that there are quite a few mothers in my exact situation. What's more, at least 5 of us live within a couple of hours of each other. We decided to get together on Saturday so discuss the upcoming LPA convention and general juicy gossip. While much more of the latter took place, we did get a few LPA related topics covered. Tonya was gracious enough to hostess. Thank you Tonya! Here's the day in pictures!

Is someone going to feed us or what? Little person, big klepto... Sarah and her daughter Kaela Knoah and Owen dicuss their upcoming European tour. Catie and her daughter Hannah (almost 4) Does the 90210 Theme come to mind?

Happy mommies with their kinda happy kids.

Owen scored a big hug from his new friend Hannah.

She totally digs me!

Remember the picture of Owen stealing Aiden's hot dogs? Well Owen learned a big lesson in Karma. He puked up every hot dog he ate on the ride home. That's just one adventure that Owen had in store for us this week. More on that in the next post....

Uhhh....Hey Cat, don't you have a son?

Oh yeah! Hmmm...maybe I should write about what it going on with him sometime huh? OK, so I've been a little all over the place lately, but I have an excuse. I put in notice to my job on Wednesday! It's a good thing. It was an amicable parting of the ways. I have some options so I'll keep everyone updated. I've been seriously contemplating Hawaii. I think Hula girl would be just the fit for me. BUT WAIT!!! This is still not about Owen! Ok - I will try to set my extreme narssicism aside for a moment and focus on the real news...

I have very exciting new about Owen, but I'm going to make you watch this video to see it! (It's worth it!). I realized how much cute video I have taken of Owen in the past 2 weeks so I put together a litte montage of clips that will show Owen's new tricks. It will take about 3 1/2 minutes so make sure you clear your schedule so that you can devote all your attention to my son!



Can you believe it? Isn't he just the absolute cutest? What a personality on this kid! Notice that when he is chasing after the cat he is saying "At! At!" for cat. This is sort of his first official word (besides Dada). And seeing as Cat is my name, I have deduced that "At! At!" is pretty close to saying mama. See how that works? Shoot! I'm making it about me again!

Call to Action!

In order to tell this story I have to spill the beans on my big addiction - reality TV! I can help it, I love it! Because of this addiction, I am a frequent viewer of Bravo TV because it houses some of my favorites such as Real Housewives, Millionare Matchmaker, Project Runway and Top Chef.

A few of months ago I wrote Bravo with a grievance about Project Runway. There was an episode in which the designers were asked to make a prom dress for high school girls. When they were receiving this assignment the girls were standing behind a transparent partition so that all you could see was their shadows. The program cut away to an interview with designer Kevin and he said that he wondered if he would be designing for "midgets". I was really shocked to hear that Bravo, whom I've always considered reputable, would allow this deragatory term to air. In my email, I took the approach that Bravo may simply be unaware of the terms offensive nature and I explained that it was a term that generally offended little people and their families. Needless to say I never received a response.

Flash forward to last nights episode of Top Chef. The chefs were asked to prepare dishes based on their favorite films. The team with the appetizer course chose Willy Wonka as their inspiration. One of the chefs wanted to serve the course as Ooompa Loompas and proceeded to do an impression of the characters on his knees. The show cuts away to an interview with Chef Dale who explained that Chef Andrew was doing an impression of the Ooompa Loompa midgets.

Now, to be fair, the Chef Dale did not seem to be in approval of the impression nor was the impression itself a big deal (it was about the characters and not of dwarfs in general). However, I am once again dismayed by the producers decision to include such casual use of an offensive term.

My one email obviously had no impact on the people at Bravo. I am asking my fellow bloggers and any family and friends who may be offended to write to Bravo about the use of the term. It doesn't have to be mean or nasty. I'm hoping that many simple letters explaining the offense will be powerful. I think it would be good for TV execs to know that there should be no place for the word on TV.

Here is the info:
First use of the term was on Project Runway, Episode 7 "What a Girl Wants". Air Date: Jan 9th, 2008
Second use of the term was on Top Chef, Episode 4, "Film Food", Air Date: April 2nd, 2008.
Contact Info:
Email: Bravo
or NBCUNI (I wrote to them, under heading Bravo) Write to:
NBC/Universal at

Bravo Viewer Relations
3000 W. Alameda Ave., Suite 250
Burbank, CA 91523

Let me know if you write!
Catherine
mother, blogger and newly appointed activist!

Prayers Needed - Seve's Story

Last week a woman named Seve contacted me. She is currently dealing with the same agonizing news that Dan and I went throught a little over a year ago. She has allowed me to share her story with you. Seve is pregnant with twin boys and one has been given a bleak diagnosis.

Cathrine, my name is Seve. I read and watched your story online a few weeks ago and thought how incredible your story is. Now, we have found out that we are praying for our miracle.

If you have any words of wisdom that you found helpful, please share.

I am 28 weeks pregnant with twin boys. At my 20 wk ultrasound they told us that one of the boys needed to be double checked. So we rescheduled the U/S at 24 wks. The same conclusion was found and we were told that Caleb has skelatal dysplasia. The next day my OB called and I was scheduled to see a perinatologist 2 days later. His first diagnosis was mild/moderate Achondroplasia, but we had a follow up visit scheduled at 28 wks. This appt. was yesterday. His new conclusion is not hopeful at all. He said that the 12 bones in the arms and legs didn't just measure short this time, but VERY short and his chest cavity has not grown in the last 4 wks. He showed us the U/S pic. and the heart- that is normal size- just about fills the cavity, my dr. said to pray for a miracle but prepare for the worst.

How do you begin to prepare for a birth and a funeral at the same time. My next visit isn't until the end of April, then I guess we will know for sure if nothing has changed from the 1st to the 3rd visit.

I'm praying that my family can be as blessed as your family has been. If you could share anything else about your inspirational story it would be greatly appriciated.

Here is her 2nd letter to me explaining a little more.

The diagnosis is bleak, my Dr. showed us the U/S picture that showed his abdomen is normal size and there is a steep slope from his abdomen to his chest cavity, also showing that his heart is normal size and in perfect condition but, almost fills his chest cavity, and the excess amniotic fluid building up because he is not passing it through his system, I may have to have an amnio depending on the next appt. to drain some fluid so that it is not creating to much pressure for his brother.

I am bracing myself for the worst. That is just the type of person I am, I can't bear the thought of coming home from the hospital with our one little boy and at the same time planning a funeral for his brother. So I am making the preperations now praying that it is all needless.

At the same time we are not giving up and still redecorating the nursery for all THREE of our boys, I'm done with the precious moments we used for our 16 mo. old Ethan, I think he is to because he's begun pulling things off the wall and everything he gets a choice on for the new room has to be ELMO or Cars. Which is great because the colors are so fun to work with, after I saw your video I took your idea of putting the boys names on the wall in bright primary colors.

As for my gut feeling, I certainly have cried my share of tears, but I feel everything will be okay. Now wether that means he will make it or not, I just know we as a family will be okay.

With my faith we believe that because we are married for time and eternity, that families are forever, (What is bound on earth shall be bound in heaven). This brings such peace to me, that what ever happens to our child, as much as we want him to survive and live a full and happy life, if it is not the will of the Lord, we know that we will be able to raise him after the resurrection of our Lord, Jesus Christ.

You are more than welcome to post anything I write to you on your blog, the more prayers on our behalf right now the better.

I will keep you posted on what we continue to find out.

I thank Heavenly Father every day for the people we meet in this world, and I know I was lead to the LPA website to help me prepare for wherever our road leads us, thank you for being one of these special angels, sent my direction.

Seve

Seve really needs all the help she can get. I believe from the bottom of my heart that all the prayers we received for Owen resulted in a miracle and she needs the same thing. Please keep Seve's family and her boys in your prayers. I will keep everyone updated.