Wednesday, May 5, 2010

Sleeping Beauty

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Dearest Lily,

I took this photo of you with my phone..you had been sleeping on my lap, and you woke up and looked at me with the cutest sleepy look. I love how you snuggle while you sleep- you just melt right into us. Your favorite way to snooze is on someone..either on our chests or laps or nestled in our arms. You sleep right next to me each night- curled up against me and squeezing your jammies or a blanket or your blankie toys with your little chubby fingers. If I wake up before you, it's not long before you're stirring and wiggling around..you want someone sleeping next to you:)

You're now 8 pounds 3 ounces- can't believe you finally broke 8 pounds! Now you can graduate from some of those newborn outfits into the 0-3 months ones. I have plastic tubs full of clothes waiting for you. Sometimes it feels hard to believe you will fit into all of them some day. I never knew babies with Down syndrome grew more slowly.

Other things I've learned ...

-not all babies with Downs have lots of health problems. Aside from getting RSV (which would be scary for any baby), you have been extremely healthy. I've been following quite a few blogs about babies with DS and have read the same thing over and over. Just because certain medical issues have been linked to your diagnosis doesn't mean we should just expect you to deal with those. In fact, we're praying and believing God for the opposite!

-Having Down syndrome doesn't mean you don't have a multi-faceted personality, even as a baby. You have a variety of moods, and you change them frequently throughout the day, just as any other baby does. You can pull a sad face that breaks our hearts, and your mad look is pretty darn ferocious.

-Down syndrome doesn't prevent you from fully engaging in "conversations" with us- you literally draw us in with those gorgeous blue eyes, and you will coo back and forth for a half an hour or more with whoever is playing with you. You are so responsive- you love to laugh in response to our laughs- especially Josiah's. Mackenzie can get you to smile every time, and Mama and Daddy are pretty good at it too. But those "ahhhgooo's"- if I had a dollar for every time your sweet voice responds to ours- I'd be a rich Mama.

-Having Downs doesn't keep you from being mobile..you have been rolling over since birth.. and watching your hourly kick-boxing sessions makes me tired! You adore your bouncy seat- if you kick the hanging monkey and birdie it activates an orchestra of songs and whistles and chirps. Our family room sounds like a virtual rain forest, cuz you know how to land those size zero footsies just right!! It's so sweet to watch your eyes and face crease into a huge grin, like Hey, check out what I can do. Karate Kid aint got nuthin on this baby girl!

-I always thought it was Downs Syndrome. After reading a million books and websites and hand-outs I found out it is Down syndrome..no s at the end of Down, because it's the name of ...

Dr. Langdon Down, who in 1866 first described the syndrome as a disorder. Although Doctor Down made some important observations about Down syndrome, he did not correctly identify what causes the disorder. It wasn't until 1959 that scientists discovered the genetic origin of Down syndrome.
It's also Down syndrome, with a little s.

Here are a lot of other things I've learned about Down syndrome. These facts are taken from Jennifer Graf Groneberg's site- she wrote Road Map To Holland, an awesome book I read. She has emailed me several times in response to questions I had after reading about her son, Avery. I loved her book, and I love our budding friendship even more.

Down syndrome is the most common chromosomal anomaly, occurring once in every 733 births.

During normal cell development, the original cell begins to grow by dividing and duplicating itself. Sometimes, for reasons that are not yet understood, the original cell does not divide evenly. When the extra genetic material is located at the 21st chromosome, it is called trisomy-21, which is also known as Down syndrome, after John Landgon Down, an English physician who first described the condition in 1866.

Although babies with Down syndrome have extra genetic material at the number 21 chromosome, all of their other chromosomes are normal. In fact, the material in the number 21 chromosome is normal, too—there is just more of it.

There is great diversity regarding intelligence, learning styles, physical ability, creativity and personality, because of the influence of the other 46 chromosomes in each baby’s genetic blueprint.

There are 3 types of Down syndrome, and (Lily), yours is the most common, which comprises 95% of the diagnoses. It is called nondisjunction trisomy-21, which means chromosome 21 did not disjoin from itself and divide evenly. This happens at the beginning of cell division and the extra genetic material is copied in each of his cells.

There is another form called translocation trisomy-21, where part of the number 21 chromosome breaks off and attaches itself elsewhere, sometimes to the number 14 chromosome, or sometimes to the other number 21 chromosome.

The third type of Down syndrome is a rare form called mosaicism, in which the trisomy occurs a bit later in cell division, so only some of the cells contain and perpetuate it.

The current, preferred terminology is Down syndrome. A child is a child first, so instead of a “Down’s baby,” you would say “a baby with Down syndrome.” This phrasing is called People First language and applies to anyone with a learning difference or a physical difference.

People with Down syndrome are not severely retarded, but fall into the mild to moderate range.

People with Down syndrome are not always happy (they have a full range of feelings, like everyone else).

Down syndrome is not fatal, and 80% of adults with Down syndrome live to age 55 or beyond.

Down syndrome is part of more than 350,000 families in the United States. It occurs in all races, and at all socio-economic levels.

Another interesting fact I learned is that..

It has been known for some time that the incidence of Down syndrome increases with advancing maternal age. However, 80% of children with Down syndrome are born to women under 35 years of age.

Well, I just realized what time it is, and we have church tonight. So... more tomorrow on things I've learned since having you, dearest Lilybird.

Loving this new learning experience, and loving YOU,

Mama oxox

3 comments:

Lisa said...

Lily is precious... I look forward to following her journey.

CKopp said...

Did you write all those Down, or did you memorize them?

Cathy said...

Hi Patti...thanks for stopping by my blog and introducing yourself. Your letters to Lily are beautiful...she is beautiful! Our Lily will be 2 the end of this month. I can't believe how the time has flown. I'm so honored and blessed to be her mother.

You have embarked on a beautiful journey...one that will make you an even better person.


Nice to "meet" you. I look forward to learning more about your family and your beautiful little flower...Lily!