Wednesday, November 11, 2009

An update!

Yikes time flies and so much is going on I just haven't found the time to get back on here!!
Soo I'll try and do this in bullets to make it as short as possible (if that possible!) and then do some fun pictures at the end b/c I just love to show off this cute peanut who is changing soo much!
* 10/26 & 11/11 Early Intervention Evaluation went well she's qualified! And we will be seeing them once a week for services and then in 6 months (4/11) we'll have another evaluation.
* 10/26 ~ 10/29 We visited my grandparents at their place in North Conway NH (where we stayed for our honeymoon!) and had a lot of fun taking Amber to Diana's bath and enjoying family and the outdoors
* 10/30 We had our Endocrinology appointment (a hormone Dr) who will be dealing exclusively with Amber's bone issues, the good news is this seems to be something that will be fixed over time!! YAAY We also found out her lack of vitamin D could be b/c I have a lack of vitamin D
* 10/31 Amber dressed up in a duck onesie from daddy and we went to my cousin's house to hand out candy and enjoy the warm Halloween night
* 11/10 We had the follow up appointment with Amber's geneticist. The good news is her chromosomes are completely fine! This rules out a few of the disorders they were looking at! The bad news is they are still concerned about other genetic disorders and she will have to have further testing done. The Dr still hasn't given us a good idea of what we might be dealing with b/c they still need to gather information on her. They also tested her for a rare metabolic disorder.
Upcoming Events for us, again I'm going to do the bullets b/c there is a lot going on!
- Amber (again) and I will have our blood tested to check the levels of calcium, magnesium, phosphorus, vitamin D and the parathyroid
- Amber will have an ultrasound done on her soft spot to check her brain structure and she will also have an x-ray to check her entire skeletal structure
* 11/24 We have Amber's 2 month visit so we'll have another weigh in!!
-We have a joint (no pun intended!) genetics and orthopedic appointment to discuss test results and discuss whats going on with her hands and hopefully get her hands splinted that day!!
- We will also have our follow up appointment with the endocrinologist that day. If her levels have gone down we'll be able to decrease her medication and if not she'll have to have a bone density test done.
At some point she will also be seeing a neurologist to determine why she is reluctant to lift/move her head, use her arms (especially the left one) and to discuss a few episodes where she becomes distant and non responsive.
Yep there is a lot going on!! But she's doing really well despite it all and we're doing a good job managing everything! We are so thankful of all the help and support we receive from our family, friends and Dr's, we are truly blessed!
Some Milestones She's Hit
* She is now 6 pounds 5 ounces!!
* She is eating a little over 3 ounces!!
*She is pretty much sleeping through the night!
* She is now smiling!! Her first smile was for daddy :)
And now here are some fun pictures!!

Happy Veterans day to all our service men and women! We are truly grateful for the hard sacrifices you all make to keep our country free! Love you and thanks Dad and Ian


  1. For some reason it takes forever for your blog update to show up on my blog list, I don't know why. It's still showing the fall day.

    I love the pictures, and your unintended pun made me chuckle. Continuing to hold the three of you in prayer, resting on His promises, knowing she is fearfully and wonderfully made....doesn't say perfect, but He knit her together for His purposes!!

  2. Hi there! I'm having the same "update" problem for your blog at my end. SO much happens so fast huh?! Thanks for the update. That pumpkin pic is just too cute. She's precious. hugs & prayers

  3. Thanks! I'm not sure why its not updating... I'm a tad computer challenged so I will have to ask my hubby tonight to see what he can do about it!

  4. I just got it now... hm. Anyway. Praying for you all :)