Tuesday, December 20, 2011

Stats, HLA Typing, and meds

So Macy had her 15 month well child visit yesterday!  It went pretty good.  She only had to get 1 shot (whew!), and has completed all of her vaccinations until she is 4 years old (yes!).  These were her stats:  
Weight: 2.7 percentile 
Head: 5.8 percentile 
length: 28.1 percentile

Believe it or not she is actually improving on her weight.  For a while earlier this year she was below the 1st percentile and has been gradually climbing.  And as you can see she doesn't have a huge head which is very common for kids with FA.  Her weight and head circumference are pretty proportional; but her height has always been up there.  Skinny and tall because she has long legs.

Macy's Pedi agreed to increase Macy's dose of prevacid above what she normally prescribes to see if that would help compensate for not giving her zantac.  We have tried a lot in the past to take her off zantac, but her reflux symptoms always come back with a vengeance.  Today was her first day of the increased dosage and no zantac.  Let's hope this works.  

FYI: For non-FA kids there is nothing wrong with zantac.  But for Macy; she shouldn't be on it because 1) It has alcohol in it which is not good for those with FA, and 2) it suppresses the immune system which is also not good for those with FA so we need to get her off of it.  When she first started it in Feb. we didn't know she had FA.  She was diagnosed in May.  We have unsuccessfully been trying to ween her off it since, but since her reflux always came back really bad we had no choice but to start it again.  Untreated reflux can cause damage to the esophagus; and can lead to esophageal cancer; which Macy is already at a much higher risk for than the general population due to the FA; so with either choice it is a lose/lose situation so lets hope this works.

We have decided to go ahead and schedule our HLA typing.  We are getting our blood drawn next week when Macy has her ultrasound and nephrology appointment so we will be at the hospital anyways.  After this Thursday Adam is off work on holiday vacation until Jan.3rd so we are getting ours done as well.  We are not really counting on either of us being a match for her (there's about a 25% chance), but we of course need to check because it is possible...just not probable.  But atleast there is a chance...anything is possible!  

Also, we need to know my HLA type and Macy's for the PGD.  The reason they need to know mine is because when they take the biopsy of the embryo; you are talking a super teeny tiny single cell they are removing.  Sometimes a cell from the mother can contaminate the sample so if they have my HLA type, they can tell if it's hers or mine just in case contamination has occurred.

I have lots of cute pictures of Macy today:

Chocolate face!

Okay, so I had to add a picture of our dog, Bela.  Can't you tell she has such a hard life!

All smiles before her Dr. appointment
Love those dimples!

This is how Macy wakes up every morning...seriously; I don't think she has ever woke up crying in the morning.  Always so happy to start the day (and see mommy and daddy of course!)

That million dollar smile again!

Playing peek-a-boo with her blanket

Getting ready for Christmas #1

If you can't tell we love the flower headbands

Taking a moment to snuggle with Adam before opening another present

Biting the hand of her new baby doll
Happy Holidays!


  1. I love reading about Macy and how you are all doing...thanks for sharing and also educating others. You all continue to be in our prayers!

  2. Aunt Dianna and Uncle WayneWed Dec 21, 11:33:00 PM

    I haven't posted anything until now but I have read all your updates. I pray for her daily and for you. You and your husband are very strong and loving people and I feel bad that your uncle and I haven't been more supportive. Please let me know if there is anything we can do as in blood test or such. She is absolutely beautiful and those dimples make me melt.