Monday, October 26, 2009

A Little Reminder

Lest we all forget what we're really doing here.

It occurs to me that my readership has grown recently. But it also occurs to me that Thank G-d, Dovi has been doing really well recently. So, at the moment, my blog that started out about the life and times of all things Dovi, has sort of turned into my blog about myself and my hobbies.

So I've decided to take a step back here and talk a bit about my Dovi.

For my newer readers, Dovi is my eldest son, who turns twelve next month (how is that at all possible?). He has Familial Dysautonomia, or FD for short. FD is one of the Jewish genetic diseases (Orthodox ladies who read Binah magazine, I've been told that there was an article about FD last month. I need to get a copy of it). Rewind back to high school biology class-FD is an autosomal recessive disease-which means that each parent needs to be an asymptomatic carrier of the disease. Remember the Punnett Square? Well Dovi is a little Punnett Square, being a aa, while Benjie and I are Aa. Remember that little square?

What is FD, you ask?

Well here you go.

FD affects the autonomic nervous system. Basically, the autonomic nervous system is not fully developed.

What does the autonomic nervous system do?

It controls all the things our bodies do automatically-blood pressure regulation, temperature regulation, and the suck/swallow reflex. In our bodies, these things happen automatically. In people with FD, they do not.

Additionally, people with FD have low muscle tone, they lack overflow tears, they lack taste buds, do not feel heat, cold, or pain, and have scoliosis.

Dovi has every single one of those symptoms.

He's on three different blood pressure medications. His temperature has hit 107 degrees. He could not successfully nurse or take a bottle as a baby. He has low muscle tone and cannot run well at all. He needs eye drops every few hours to keep his eyes moist-he has had horrible corneal abrasions in the past-his eyes have scarring over them and he's legally blind. He doesn't feel pain. He's broken his tibia three times and has not felt it. He's had scoliosis surgery twice and currently has the most beautiful posture ever, thanks to the titanium rods and about thirty screws in his spine.

People with FD also experience something called Dysautonomic Crisis. Some of my older readers might recall last winter when Dovi suffered through a Crisis for four days. Basically, when people with FD's bodies are stressed, their bodies experience something called a Crisis. In a Crisis, blood pressure skyrockets, the digestive system doesn't function, and retching ensues. It's really not pretty. It can take hours to days for a Crisis to abate; sometimes people who are in Crisis need to be hospitalized for IV medication to control the symptoms. Thank G-d Dovi has never had to be hospitalized-but Crisis is not pretty.

Basically, the bodies of people with FD just do not work correctly.

So that, on paper, is what Dovi is.

But what is Dovi in reality?

Dovi loves hockey, baseball, football, and basketball. Specifically, the Blackhawks, Bulls, Bears, and Cubs. Dovi loves fish sticks, cheesy bread, french fries and pizza. Dovi loves to see his friends at school, camp, and shul-and let me tell you, anyone who says 11 year old boys are mean hasn't met Dovi's friends. These boys will hug Dovi and do anything they can to help him. Dovi is a Wii scam artist. He loves music. His current favorite song is "Chaverim". He loves to call his counselors from Camp Simcha and chat with them. He literally strolls around the house, "Hey, Asher! What's up?". Dovi can't wait for his Bar Mitzvah and when he gets to put on Tefillin. Dovi loves to hang out with his brothers and sister and watch movies with them. Dovi wakes up at 6 am every morning ("it's my time!") and scoots himself downstairs to watch TV.

So, yes, Dovi does have FD.

But Dovi is not only FD.

He is so much more than that.


Rach said...

"So, yes, Dovi does have FD.
But Dovi is not only FD.
He is so much more than that."

That is such a beautiful line and so true for lots of things.

Dovi is amazing and so are you Sara (aaawwwww, :) sorry for the sap)

Elisha said...

I agree with everything Rach said!! Those 3 lines just say it all. I am continuously inspired by you!! ( I decided to be sappy too).

porushmom said...

That's my boy! It so much sweeter having him in my life. And he is blessed to have amazing parents like you and Benjie. No one should be defined by what they have but by who they are. You all continue to teach us this every single day.


Anonymous said...

You forgot about his smile that lights up a room!

David and Chaya Esther

chaviva said...

Everyone has already said it so well, but this was beautiful.

Miriam said...

He is just the sweetest, most charming, happiest boy on the planet! Sara- you are making me have total and complete Dovi withdrawl!

Anonymous said...

Really beautiful, Sara!

Raphi said...

Great post.

Anonymous said...

We love that boy!! He lights up everyone's life. Mommy

Anonymous said...

Baruch Hashem you have not written about him in a long time. I will take posts on your coupon deals and your other kids with their cute sayings any day if it means that nothing spectacular is happening with dovi. we love you! tamar

Yaffa/Yitz said...

goosebumps. beautiful post. may he and your three others continue to be sources of nachat.

Nahum said...

Love him! He is such a good natured boy, bli ayin hara.

Rocheyl said...

I'm a new reader that stumbled accross your blog looking for something else, but being the Jewish Genetic Disease also run in my family I enjoy reading ur blog and catching up with your family..

I have one question, I hope you don't mind my asking but if Dovi doesn't have taste buds how does he have favorite foods?


DESJ and Company said...

I kind of wrote it unclearly-Dovi lacks most taste buds-not all-so he tastes mostly strongly flavored foods. He also prefers crunchy foods-I think b/c he gets input from the crunch-makes up for the missing taste.
A lot of FD kids like mexican and chinese foods b/c they have a lot of flavor.

Heidi @ Tayterjaq's Rebels said...

I found your blog through reading Shosh's blog. I have thoroughly enjoyed reading your blog since I have found it. Whether the subject is Dovi or couponing (a deep love of mine too) or anything else, you are an awesome blogger. Thanks for sharing!