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!
Macy's Baby Blessing
Sunday May 15, 2011 was a very special day for us. Our little Macy Anna was given a beautiful Baby Blessing at Church by her dad. She was just 5 days old but we wanted some of our family that were in town to be there. And with her being sick, we felt it was the right time to do it. It was a very emotional blessing for me and I cried through it all. After the blessing Louis handed Macy right to Baylee and she was so proud to be the one to get to hold her. It was so sweet of him because it made Baylee's little life. She was just glowing! She sat the rest of the meeting holding her and never moving or saying a word (that has never happened in church!). It was so sweet to see how much she loves her baby sister. Louis had to give a talk in Sacrament meeting that made me keep crying through the hour. He did so great as always. I am so proud of my family!
Here are a few pictures of Macy's day!
Our FamilyOur Family with Omi and Uncle Rogerand with Grandma CyndeMy mom had made both Macy's beautiful Blessing dress and yummy cake! Thank you mom, you are so talented and are the best!
Thank you mom and Cynde for all of your help with the girls while you were in town and for making Macy's Blessing day so special! We were so glad you could be there, but really wished that all of our family could have been there too! It really was a special day. We love and miss you all!
Here are a few pictures of Macy's day!
Our FamilyOur Family with Omi and Uncle Rogerand with Grandma CyndeMy mom had made both Macy's beautiful Blessing dress and yummy cake! Thank you mom, you are so talented and are the best!
Thank you mom and Cynde for all of your help with the girls while you were in town and for making Macy's Blessing day so special! We were so glad you could be there, but really wished that all of our family could have been there too! It really was a special day. We love and miss you all!
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