Sunday, December 19, 2010

Busy Busy Busy!!

We've been so busy this week and things aren't going to slow down until sometime after the new year!
We've been madly cleaning and rearranging to accommodated family coming home and holiday decorations.

Friday was a very busy day. Amber had an appointment in Boston. We headed in early to meet with a few people and do blood work before hand. It was a good thing we were so early because Amber threw up at some point on the ride in and it took me quite some time to get it all cleaned up!
Amber's full DNA sequencing finally came in! Which will be an entire post by itself but we were able to meet with the nurse practitioner to get the write up of it and talk about it a little bit. Now that we have all of Amber's information the hubby and I were able to have our blood taken that day to see if we are both carriers or not.
Children's at Christmas is absolutely beautiful! They have a giant tree, huge wooden train set in the lobby and everywhere is decorated beautifully. They also have a lot of gift donations this time of year. It was so cool to see carts overloaded with presents headed up stairs to the inpatients. Due to Amber's condition she was on the list to receive a gift.  Whoever had her name was more than generous and we are very thankful!
Her appointment that day was with a resident and senior neuromuscular neurologist. I was extremely pleased they were very thorough in the appointment and very helpful after words. Since we know what Amber has we already have an idea of what to expect from her in terms of what she is going to be able to do physically. Which is why I was so happy with them, they easily could have had no interest in us know that we already knew everything. They are going to work on getting Amber into aqua therapy, since regular stretching can be so painful for I-cell babies. They also want her to get communication therapy and a full hearing test. I'm also happy to say that they are very excited to join her team of Dr.s!

Friday night we took Amber to the Nutcracker that was being put on by the group I used to dance with. Amber loved it, she was also enthralled with one of the camera men! At intermission we took her back stage and I don't know who was more excited to see each other, her or the dancers. The weirdest part was seeing girls that I taught as 3 year olds all grown up. Watching it really made me miss dancing and I still hope that one day Amber will be able to.

Saturday Luke was back at the eye Dr. His eye is healing up nicely and he's on new drops now. Amber also had her first salon haircut! She was so well behaved and now looks so adorable! I promise I'll get pictures up once things settle down. We were able to visit with my grandparents again. I'm happy to say they were in very high spirits and it sounds like my grandma should be home early this week!

Today (Sunday) we enjoyed a lovely Christmas Cantata. Amber's love of music never ceases to amaze me.  We finally got our Christmas tree today!! Amber loves it she was so excited to see it go up this afternoon.

And now I'm off to do some baking and start decorating this tree! 
This is from last week at the nursing home Amber loved these dolls. And yes this is where we had our family Christmas card picture taken, talk about some serious multitasking! 


  1. Thank you for the post Skye!! What a wonderful full week of reuniting with your dad, appointments, and fun Christmas times! Cant wait to hear more about each of those things! And cant wait to see the 3 of you1 It seems like Amber has grown up and developed in sooo many ways since you were here in October. Cant wait to see for ourselves..and have Amber see Gramma and Pap thru her glasses for the first time! What a beautiful picture you posted! Thanks for always keeping us up to date! It means very much to this far away Grammy! Love you all...11 more days..lets all stay healthy! ♥

  2. You are in my most recent blog so check it out. There is a rant first, you can skip it if you want, but down at the bottom there is a part about "people I admire" :)