Macy's Medical Update

Well there has been a lot going on in the last few weeks regarding Macy.  We are still fighting with insurance about coverage for Macy's new drink.  We were denied coverage and are in the appeal process.  I hope to hear something soon!  In the meantime, Jeremy and I have been purchasing this drink out of pocket.  I am very thankful that I have been able to find it discounted on Ebay, but it is still costly considering she goes through 1 case a week.  Her appetite seems to have improved since starting this drink, and I pray that we are making postitive changes! 

After our appt. with our metabolism specialist, we headed for lab work.  The checked some lobs that are related to Macy's hormones, and will possibly tell us if Macy has a growth hormone deficiency.  The labs have come back abnormal, therefore they are sending us to Endocrinology at Riley.  We see them next week on Wednesday.  I am very nervous about what they will have to say, and will probably have a sick stomach on that day, just like I did yesterday for our GI appointment.

We saw our new GI specialist for the first time yesterday.  She is the head of the GI department, and is AMAZING!  After much talk, and her in depth study of Macy's test results from her liver biopsy and veno-gram she had done back when diagnosed with Abernethy Malformation, she does not believe that Macy's liver malformation will lead to liver failure (or a transplant).  The one complication that can happen due to this malformation is the long-term effects of not having your blood cleaned by the liver is her neuro-cognitive function.  This does not always happen, but can.  She does not think that we should pursue a fix from the doctor in Chicago (whom she knows very well).  She is planning on doing a few things right now: 1) she is contacting the doctor in Chicago just to make sure he feels the same way she does about avoiding surgery at this time.  2) discussing Macy's case with the surgeon who diagnosed her back in 2008 to make sure he doesn't feel that another biopsy or veno-gram should be performed.  3) lab work.  She is checking Macy's blood clotting, amonia levels, aldolase (muscle disease type lab), and also checking for Celiac's disease.  We were going to take her on Friday or Saturday to have these labs done, but now we are going to wait until our appt. with Endo is over just in case they want to run more labs. 

Our Sweet Macy with her preemie outfit!

 

I am not going to lie....we are feeling like we are in storm again.  We are boarding up and buckling down.  We will remain strong.  We have each other, family support, an amazing little girl being stronger than ever, and one amazing GOD leading our team! Please pray for insurace to see the need for assistance, strength for all of us in the household, and for some answers for our sweet little Macy! Thanks for continuing to follow our journey and showing us so much love and support!