Monday, March 17, 2014

8 Months and Going Strong

It has been over a month since I have updated and to be honest, I don't have a lot to say.  But tomorrow is 8 months since the transplant and I could not let that go without acknowledging it.

We have been busy but as far as Alexa's health, not a whole lot going on right now.

We are down to monthly draws and for the third straight month Alexa's liver labs are bang on.  Right in the middle of normal.  Just where we like them.

We have clinic every 2 months at the moment.  Our metabolic appointments always brought on a ton of anxiety.  Fortunately for us, this does not hold true for our liver clinics.  It is just a different atmosphere. 
It is no secret that I absolutely adore our doctor, and at every visit I am reminded of why.  I never, ever have felt rushed with him.  He comes in, has a seat and is really interested in all that Alexa is up to--medically and personally.  He wants to hear about our trips, her favourite restaurants, her dance classes.  He listens to all our concerns, takes each one seriously and formulates a plan for them all.

The one concern that I have had is in regards to Alexa's hair. We have noticed her hair thinning out and falling out a lot more than normal.  At this point it is not so common. Immediately and up to 2-3 months post transplant it is normal for children to get small bald patches.  It is a combination of the stress of the surgery and all the medications.  Alexa did experience this. 
But this is different--they are not bald patches; but her hair is definitely more fragile and she is losing way more than is normal.  Dr. A took a look and it is not as bad a I thought; however, seeing as it is not common at this late in the game, he ordered a bunch of extra labs for next month.  There are a couple different reasons we are looking at.  Deficiencies in Arginine and zinc are possible.  Her prograf could also be the culprit.  We are going to monitor her for a couple of months and if her labs return normal, we will be referred to a dermatologist if there is no improvement.

We had an ultrasound as well and the doctors did a happy dance upon reading the reports that her ascites is completely reversed.  Well really I could have told them that and they knew it too.  Clinically she has not looked like she had any water build up at all for months.  But last ultrasound did show that there was still some water retention.    I know this bothered her doctor some, so he was quite happy for the reports to finally match up with what he was seeing. 

All in all, she had great labs, great ultrasound, appropriate height and weight gain! We can deal with a little hair loss....

It is hard to believe that just 8 short months ago, this is where we were....
The moments right before I had to leave my darling angel in the hands of her surgeons.
Who would have believed then, that 8 months later, this is where we would be:

 Sailing around the Bahamas!


No comments:

Post a Comment