Finally after 5 LONG horrible weeks of blood tests, hospital visits, scans, biopsies, sleepless nights, etc...our little Macy was diagnosed with Alpha-1 Antitrypsin Deficiency. This is a liver disease in infants and a lung disease in adults. Unfortunately it is also a genetic disease that was passed down by Louis and I since we unknowingly were carriers of the specific genotype. It is a very rare disease to detect and that is why it took so long to know what was wrong with her. All of our kids have a 25% chance of inheriting this. We will have both Baylee and Savana tested because they too can have the genotype and not show symptoms yet. We are REALLY praying that they do not! We are very grateful to finally have an answer for Macy though. Now we can move on to treating her. She will have to be on meds and supplements everyday and constantly be watched. She needs to be thriving and gaining weight like all healthy infants. Her next 2 years of life are crucial for her liver to make it. So far she is doing well despite having the condition. We are praying everyday that she continues to. Here are some pix in between all of the mess we were going through. Thank you again for everyone's prayers.
Macy, 12 days Old
We LOVE you SOOOooooooo much Macy!
3 comments:
grrrrrr, your blog won't update on my list! Weird! So glad that you have been able to find out what is wrong with Macy so you can get her treated the way she needs it. She is beautiful. We are keeping you guys in our prayers.
Your blog doesn't update on mine either! Weird. I CANNOT wait to meet this Macy girl. We love her soooo much too! Send me some labor vibes. I'm NOT going to miss seeing you guys. :)
It's the count down until I get to meet that little babe!!
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