Monday, November 30, 2009

What Happened to November!

Yikes! Time just seems to be slipping through my fingers these days! I can't believe tomorrow is November : / On the 15th the hubby and I celebrated our 1st anniversary! Yet again I can't believe how fast time is flying by and that we've already been married for a year!! And what an eventful year it has been! To celebrate we did an over night in a little Bed and Breakfast called Stepping Stones in Wilton NH. It was very cute and run by a little old lady who is an amazing cook! Amber was all smiles when we came back.
 For Thanksgiving we went down to PA to see my hubby's family. It was a whirlwind 6 day trip but worth all the time, it was so nice to see our family down there again and most of them hadn't meet Amber yet. We also got to spend some time with my brother and dad. Needless to say Amber was hardly held or showered with love the whole time ;)
I don't have much of an update on Princess Stinky Pants except that she seems to be doing well, getting very long! Her endocrinologist called today (I didn't talk to him) but he said to stop the vitamin D. My guess is her levels are back to normal! Tomorrow is her 2 month appointment, I can't wait so see how big she's gotten! Thursday is our joint appointment with the geneticist and the orthopedic dr in the morning and the endocrinologist in the afternoon! I can't exactly say I'm excited but I really can't wait to get the results from her tests. We finally have a date for her neurology appointment it will be Jan. 4th, it seems like a long way away but I'm sure (like always) the time will just fly by!
Happy Belated Thanksgiving! I'll try to get better about posting more this month but who knows with the busy holidays fast approaching!

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