Monday, December 10, 2007

7 Months Old!

Our little Christmas angel is 7 months old today. Wow, how time flies!

We had our follow-up appointment with the Geneticist and pending some blood tests, he believes Zoe has a rare genetic disorder called Russell-Silver Syndrome (it is, in fact, in the family of dwarfism--the nickname 'dwarf baby' stays!).

Common symptoms of Russell-Silver Syndrome (RSS) are (I have highlighted the symptoms that Zoe has):
  • low birth weight
  • poor growth
  • short height (stature)
  • delayed bone age
  • normal width of head
  • wide forehead with a small triangle-shaped face and small, narrow chin
  • curving of the pinky toward the ring finger
  • short, stubby fingers and toes
  • cafe-au-lait (coffee with milk) colored spots
  • arm span less than height (short arms)
  • kidney problems
  • body asymmetry -LARGE side is "normal" side
  • persistently low weight-for-height
  • lack of interest in eating
  • lack of muscle mass and/or poor muscle tone
  • downturned corners of mouth & thin upper lip
  • high-arched palate
  • small, crowded teeth
  • low-set, posteriorly rotated and/or prominent ears
  • unusually, high-pitched voice in early years
  • syndactyly (webbing) of the 2nd and 3rd toes
  • dimples in the posterior shoulders and hips
  • narrow, flat feet
  • scoliosis - curved spine, associated with spinal asymmetry and accentuated by a short leg
Most of these things alone don't seem unusual, but put together it makes sense. Some of these things (like crowded teeth) we won't know for a while. Most importantly, most people with RSS are small as kids but grow up to be normal (but small, like 5'3" (like me!)) sized and are for the most part cognitively normal. There isn't really anything Mike and I can do right now except just make sure she gets enough calories. This genetic disease is a mutation (Zoe is an X-Man...X-Woman...X-Person?) and there isn't anything that Mike or I could have done differently.

At least finally the doctors can stop scratching their heads everytime we visit, insisting there's something "unique" about Zoe. For more information on RSS I suggest Googling it, there is tons of information out there.

General Zoe updates!

Weight 12lbs. 5oz. (5lbs. 9oz. at birth)
Height 23" (16" at birth)

Zoe sleeps ALL the way through the night now (about 10-11 hours). She used to wake up around 5:00 every morning for a quick feeding then sleep for another hour or two but now she sleeps until 6:00 or 7:00. Yesssssssssssss.

She loves to practice standing and gets this 'big girl, so proud of herself' look on her face when she stands (we have to hold her up still but she can bare all her weight on her legs).

Zoe has her first tooth (bottom, front, left side)! It came really fast, Mike and I noticed that there was something going on down there one day that she was kind of fussy and the very next day she had a chomper. She has another one coming through as I'm writing this blog (bottom, front, right side). Zoe has been in a lot of pain today but her teething toys and lots of love from me and Mike has helped.

If you look real close at Zoe's mouth here you can see her tooth.

Remember this picture of Zoe when she first started playing in the activity center (beginning of September)? Her feet couldn't touch the bottom yet...

Well, look at her now! She's an expert at this thing, her feet touch the bottom, she can reach everything with her arms, and she LOVES the music it plays.


Zoe's favorite time of the day is bath time. She especially loves to lay down so the water is covering her ears. Then she will make long vowel sounds like "ahhhhhhhhhhhhhhhhhhhhh" with a huge smile on her face because she likes the way it sounds. And she laughs when Mike and I talk to her because we sound funny when her ears are under water (okay, so I'm just guessing that that's the reason she's laughing). When she gets over the under water sounds she spends the rest of the time splashing in the water. Mike and I are usually soaked after her baths from getting splashed on.


Crazy hair!

Many of you may remember when she seemed to cry all the time. She hardly cries any more (she was still a joy to us when she cried a lot). In fact, she only cries when she's really tired. She is happy, social, and talks to everybody around.

Well, no matter what the future holds, Zoe is an absolute joy to us! She's so much fun!

3 comments:

  1. Hi Ralston Family! You don't know me and I came across your blog because I have a daughter with Russell Silver Syndrome as well. In fact I am a volunteer with an organization called the MAGIC Foundation. MAGIC is not for profit so I don't want your money!! RSS is so rare and many families find it hard to find physicians experienced with RSS and it's treatment. Your blog struck me for three reasons. 1. Zoe is beautiful and has classic RSS features!! 2. I noticed how excited you are about her finally sleeping thru the night. I wanted to make sure you were aware that hypoglycemia is a very common characteristic of RSS children and most often occurs undetected overnight and can cause damage over time. 3. You mentioned that RSS kids are small as childen but grow up to be normal. The average UNTREATED RSS female is about 4'7", though with ght, most RSS children can achieve their genetic height potential. I would hate for you to have misinformation (and there is A LOT of it out there). If you would like more info about RSS or to talk with other families with RSS, feel free to contact MAGIC. Information and contacts are FREE!! Most of all, enjoy your daughter she is beautiful and special in so many ways!!

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  2. Sweet, sweet Zoe, what is happening with your hair?? You silly little girl. Grandma loves you so much. I can't wait until I get to hold you again.

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  3. You are right---it's nice the doctor's finally came to a conclusion. You two are such great parents... Zoe is a such a happy baby and a joy to everyone (even the dental asssitances!). We have no worries about Zoe at all. She is in good hands.

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