The last month has been filled with so many blessings, I just had to take note of them. I was trying not to be anxious during December in anticipation for Emmerys heart catheterization last week. I was surprised with myself that I didn't COMPLETELY freak out. Christmas was a really great distraction.
We were blessed this year with multiple anonymous gifts. I am struggling with accepting them without a face to say thank you to. So, if you were one of the very generous people that gifted our family this year I just want to give a BIG thank you. I was telling a friend of mine that these gifts were amazing to receive not because of the amount or what they are, but just for the fact that someone actually took the time to think of our family. It is just so overwhelming to think that someone we may not even know cares about us that much.
One of the gifts was quite exciting for the kids. We came home from a couple of nights at my Dad's house for Christmas to find a couple of Santa bags on our front porch. Inside were gifts for all of us! The kids were just ecstatic. Included was a beautiful letter telling us that they heard of our family and have been praying for us! The letter was the best gift. I have it posted in my kitchen to always remind me that we are not alone and that God provides.
The letter read:
"Your family and sweet Emmery Rae have touched our hearts. You don't know us, but we share an incredible bond as brothers and sisters in Christ.. and we just wanted to spread a little extra Christmas cheer your way!
We want you to know that we are praying daily for God's perfect peace to transcend on your entire family, for answers where they are needed, and for relief for sweet Emmery. A parents heart is truly a mirror into the heart of the Father and I know as a mama how it must break to see your precious one in pain. I find comfort in knowing that God feels that too. His arms are open and ready to envelop you holding you and comforting you as only a Father can do.
Know that on the days when you feel so weary you can't even form the words to pray, we are standing in the gap. That you are being lifted up, surrounded in love and heavens gates are being flooded with prayer of intercession on your behalf. For sweet Emmery. For your boys. And for the two of you.
Merry, Merry Christmas"
"The righteous are like a tree planted by streams of water, bearing fruit in all seasons"Psalms1:3
THANK YOU to all of you have sent well wishes, prayers and gifts to us. We are so overwhelmed there just aren't words to articulate just how much you have touched our family in a positive way. It gives us hope and encouragement and really does change our attitude. Your love for our family gives more than you would even know. It gives HOPE.
I have also been in touch with another mother of a child with Alagilles. I met her through facebook (ps thank goodness for facebook and what in the world did mothers with special needs children do before fb and google?)
She has helped me so much by giving me some tips and ideas to help Emmery. She gave me some direction that has really helped me. What's difficult about rare genetic disorders is that they are RARE so I don't have anybody to help navigate this with me. I get really overwhelmed with just how much I need to do just to keep this kid growing and healthy. I get "stuck" sometimes and just don't know which way to go. This fellow Alagilles mother has been so gracious to write me and even let me call her and drill her with questions. I am so thankful that she took the time to talk to me and share her daughters story.
Emmery's catheterization:
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Emmery's heart cath went way better than I could have ever expected. I thought I was going to be sick with anxiety the day prior and the day of, but surprisingly I was peaceful and calm.
Everything went well, her IV went in quick without much of a fuss, she did well on the longer car rides up and back, she handled not being able to be fed before anesthesia well and was even smiling at all the nurses.
She went into the cath lab around 1pm and we received updates every hour. The catheterization basically was going to give the cardiologists a map of her arteries around her heart. They knew her heart is working harder than it should but they weren't sure exactly why. It showed that all of her arteries are just generally underdeveloped or small which causes the heart to pump harder. There were also a narrowed spot that they were able to balloon and stretch a little. They didn't want to balloon too much due to how small she is. The catheterization and ballooning took four hours and then we were able to go back and see her. She woke up really well and was even able to breast feed within 30 minutes after waking. The only hard part was her itching was bothering her which was hard to comfort. If she wouldn't have had an itch it would have been much easier. Her throat was also rough and voice was scratchy due to the breathing tube she had while under anesthesia. We waited in recovery for six hours and then were admitted for the night over at Dornbecher's Childrens hospital. She recovered beautifully and we were able to leave the next day after a chest x ray. We now will continue to follow up monthly with a echo cardiogram and review by her cardiologist. They will be watching her heart to make sure it's not working too hard and causing thickening to her heart wall. They hope that she grows that her arteries will grow as well. 
We are so very thankful that the procedure went well and we have an idea of what we are working with. Her heart will be something will forever be watching. Next month we follow up with her echo and we will also see her GI to check her growth and talk possible medication changes to help with her constant itch.
Thanks again to all of our family, friends and those we haven't even met...
Emmery's Mom
