Thursday, January 8, 2009
Friday, January 2, 2009
Ho ho holidays
December is always a busy month and it always seems to rush by so quickly! I can't believe real life starts back up on Monday. Boo.
We've had some fun times since I last posted: (remember to click on photos to enlarge them)
And growing real ones
Keeping warm on those cold days
Capturing memories
Hobnobbing with celebrities
(OK, here is the story. Ryan grew up in St. Paul with a guy named Mat Gordon who has become this huge male model. He saw this advertisement on the bus stop by our Safeway and we took a picture with him right beside his old friend Mat.)
Keeping Wii Fit - so much fun!
OH, and Christmas and such other related activities. Click here to see an album of our Christmas photos.
Click here to see a few pictures of our trip to Galaxyland and Build-A-Bear that we did today when it was almost -40 outside.
As a side-note: In the course of one month (Dec. 5-Jan. 5) we celebrate 6 birthdays in our immediate family (11 total if we count extended family) and there were celebrations galore. Dad's is Dec. 9, Grandma's is Dec. 15, Rob Mark's is Dec. 21, Natalie Layton's is Dec. 28, Ryan Layton's is Dec. 30 and Greg Patterson's is coming up Jan. 5. It has been a fun birthday month so far.
Also, a few thoughts about passing along memories. It is so fun to see your kids enjoying something that you remember playing with. My dad found an old puzzle that he did with Madeline this Christmas and I remember him doing the puzzle with me!
Anybody remember flannel board? This farmyard scene and animals was made by my grandma and my dad played with it and we played with it and now Claire and Madeline are able to play with it. I want to make something that will endure through several generations of kids! Thanks grandma!
A few other accomplishments of note - dejunking our house and taking 3 loads to Goodwill, steam cleaning our carpets and rearranging furniture. It feels so nice to have a neater, cleaner place to hang out.
I hope everyone had a great holiday and is looking forward to 2009!
We've had some fun times since I last posted: (remember to click on photos to enlarge them)
Drawing on the walls
Wearing chocolate pudding goatees
And growing real ones
Keeping warm on those cold days
Capturing memories
Hobnobbing with celebrities
(OK, here is the story. Ryan grew up in St. Paul with a guy named Mat Gordon who has become this huge male model. He saw this advertisement on the bus stop by our Safeway and we took a picture with him right beside his old friend Mat.)Battling cabin fever when it's too cold to go out
Keeping Wii Fit - so much fun!
OH, and Christmas and such other related activities. Click here to see an album of our Christmas photos.
Click here to see a few pictures of our trip to Galaxyland and Build-A-Bear that we did today when it was almost -40 outside.
As a side-note: In the course of one month (Dec. 5-Jan. 5) we celebrate 6 birthdays in our immediate family (11 total if we count extended family) and there were celebrations galore. Dad's is Dec. 9, Grandma's is Dec. 15, Rob Mark's is Dec. 21, Natalie Layton's is Dec. 28, Ryan Layton's is Dec. 30 and Greg Patterson's is coming up Jan. 5. It has been a fun birthday month so far.
Also, a few thoughts about passing along memories. It is so fun to see your kids enjoying something that you remember playing with. My dad found an old puzzle that he did with Madeline this Christmas and I remember him doing the puzzle with me!
Anybody remember flannel board? This farmyard scene and animals was made by my grandma and my dad played with it and we played with it and now Claire and Madeline are able to play with it. I want to make something that will endure through several generations of kids! Thanks grandma!
A few other accomplishments of note - dejunking our house and taking 3 loads to Goodwill, steam cleaning our carpets and rearranging furniture. It feels so nice to have a neater, cleaner place to hang out.
I hope everyone had a great holiday and is looking forward to 2009!
Tuesday, December 16, 2008
Good News
(click on underlined words for links for more information)
A few months ago we finally got a diagnosis for Claire. Dr. Bolduc at the Glenrose Rehabilitation Hospital did a gene karyotype and found a deletion on her 14th chromosome where she is missing the gene called FOXG1. They are calling it a variant of Rett Syndrome because it is so new that there isn't a real name for it yet. The only other reported cases are in a family from Italy. The children are still young so we really don't know how Claire will be affected in the long run and their case is also different. These children have the gene but it is mutated, while Claire is missing the gene. Apparently a mutation can often be more harmful than a deletion because the mutated gene can affect other genes.
Ryan and I had blood tests done to see if we contributed to this missing gene by translocation (basically, Ryan and I would have all the necessary components but when our DNA split when we gave half to Claire, it might have been missing the piece she needed). It's all very complicated and I wish I had studied more about genetics. However, if we had passed it on to her, the chances would be very high that any more children would have the same disabilities as Claire. (I don't want it to sound like we wouldn't want another child like Claire - she's been a huge blessing in our life but quite honestly it would put a very serious strain on our physical, emotional and financial well-being).
Well, today we got the good news that whatever happened with Claire was a rare occurrence and there is no increased risk for the same disabilities in any new children. It's kind of nice to have some answers about what happened.
A few months ago we finally got a diagnosis for Claire. Dr. Bolduc at the Glenrose Rehabilitation Hospital did a gene karyotype and found a deletion on her 14th chromosome where she is missing the gene called FOXG1. They are calling it a variant of Rett Syndrome because it is so new that there isn't a real name for it yet. The only other reported cases are in a family from Italy. The children are still young so we really don't know how Claire will be affected in the long run and their case is also different. These children have the gene but it is mutated, while Claire is missing the gene. Apparently a mutation can often be more harmful than a deletion because the mutated gene can affect other genes.
Ryan and I had blood tests done to see if we contributed to this missing gene by translocation (basically, Ryan and I would have all the necessary components but when our DNA split when we gave half to Claire, it might have been missing the piece she needed). It's all very complicated and I wish I had studied more about genetics. However, if we had passed it on to her, the chances would be very high that any more children would have the same disabilities as Claire. (I don't want it to sound like we wouldn't want another child like Claire - she's been a huge blessing in our life but quite honestly it would put a very serious strain on our physical, emotional and financial well-being).
Well, today we got the good news that whatever happened with Claire was a rare occurrence and there is no increased risk for the same disabilities in any new children. It's kind of nice to have some answers about what happened.
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