Tuesday, March 6, 2012

March Appt.'s

So a lot has been going on in the past couple weeks.  We found out Macy's is complementation group A. (whew!), and so we are on to getting a pre-authorization approved to insurance for her gene sequencing.  They will deny it, and we will send an appeal hopefully in the next week or two.  Gene sequencing takes a lot less time than the previous testing so that is good.  Then we do Adam and I's carrier testing and that's it.  I am confident we will have everything we need to get started by July.

The biggest news lately is that Macy is full-on walking now.  She took her first steps about 12-14 days ago, and she went from 2-4 steps at a time to now walking around the house no problem.  I have no doubts she will be completely caught up in no time.  Luckily Adam was here when she first started so he saw her first steps, then he was in California for a week for work, and when he got home Thursday night she had progressed so much he couldn't believe it.  She is probably walking 90% of the time now and crawling 10%.  Go Macy!  :)  She is also still eating very well so that is awesome!  She ate part of a grilled cheese sandwich the other day and it was so great to see.  She just doesn't seem very interested in drinking more than 3-4 oz. of liquid a day so we are still supplementing her liquids (Vitamin D milk and water) through her G tube.  Which reminds me, we have to change her button soon, because we keep putting it off.  Never did it in Feb. so we really should change it soon.  Maybe this weekend.  

Macy does have a couple appointments in March.  At her HemOnc appointment she will get all of her labs done, along with her Nephrology labs.  Let's hope all of her numbers are still in the normal range.  Then we'll have 3 more months of breathing a bit easier.  We are participating in another study so she will also need to get blood drawn for that as well.  This study looks at cancer trends in patients and families of patients with an Inherited Bone Marrow Failure disorder.  I figure anything we can do to help further research the better.  Macy also has her 18 month well-child visit this month!  I am interested to see if she will still be in the 2nd percentile for weight or not.  In the next month or so she will finally be big enough I think to be in a forward-facing car seat.  She is around 20 lbs. now.  

We have been getting ready for our trip coming up, and are very excited to get away and relax.  Macy has been getting more and more acquainted with the Princesses and I think Belle is her favorite right now (beauty and the beast).  I can't believe it's been 3.5 years since we've been on certainly feels like it, or longer.  We got lucky and have a non-stop flight there and back so hopefully it won't be too bad (I hate flying). 

Spring is around the corner!  :)

take care,

No comments:

Post a Comment