Tuesday, August 26, 2014

Baby Girl's 1st birthday

Hello. Welcome to my little blog. I meant to start this two months ago when my family, following a prompting left beautiful Orange County, to move to Arizona. My sweet baby girl turned 1 this month. Turning one is always special. I love first birthdays!! They don't have to be big. They don't have to themed. But they do need to have cake for babies to play in. I always wait a whole year to give my babies sugar, so you can understand why eating the cake is my favorite part.
But this birthday was more than that.  Last spring my baby girl was diagnosed with Osteopetrosis. When she was born last year she was in the NICU for 3 weeks. It was really hard on the whole family. They let her go home but we didn't really know what the problem was. Then there was the endless doctor visits. CHOC was amazing. And we saw so many specialists. Then we were told about her condition. It's kinda like osteoporosis, only more rare. And instead of porous bones, her bones were really brittle. And not only would they petrify over time but they would stop performing their functions.  Her best bet was to get a bone marrow transplant and go through chemo. If not she most likely wouldn't live past two. 
She had a bone marrow test to find a match along with tons of other testing. She was so good at giving blood. She would just cry upon initial poking. Long story short we felt inspired to move even with all this going on. And days before we were to leave I get a call. Turns out she doesn't have Osteopetrosis. Genetic tests that took weeks and weeks came back negative. They don't know what is going on. She still needs be monitored and make sure it isn't anything else big. But she doesn't need a bone marrow transplant!
My little sweetheart wasn't going to be celebrating her birthday while going through chemo. She wasn't going to be in a hospital room, possibly not able to be around her 3 older brothers who she adores. (I was planning on decorating her hospital room) Her birthday party would celebrate her birthday and her life. That she is living and healthy. We had to travel to California to celebrate there. I wanted her to be surrounded by people who love her and adore her. People who have been praying for her and offering their bone marrow. Her birthday meant so much to be. And we are so thankful for wonderful family and friends who celebrated with us. Some of them traveling far. 

Of course I don't have nearly enough pictures of her party. But I am so thankful I was able to get some. Baby girl's little boyfriend from the NICU was able to be there which was so wonderful. He was there even longer than she was. And isn't her cake gorgeous??? One of our favorite babysitters made it for her, which made it even dearer to me. She liked eating her cake. She has made some huge strides in eating these past couple of months. I thought we might have to do pudding. 

I am so glad we were able to celebrate with her "One"derland party. She looked darling in her Alice dress I made for her. I love the book Alice in Wonderland. And I hope she develops a love for reading. I look forward to reading with her. 

Happy Birthday my beautiful girl. I have waited so long for a daughter. I am so thankful you are in my life. You are brave and strong and have gone through so much for being so small. You are such a joy to our family. Everyday is a gift with you. I am so thankful for everyday I get with you. I think you are such a miracle. I have been praying that you would have the gift to be healed. I am humbled and honored to be your mother. I know you will continue to be a light to our family and those around you. When I thought you might leave us sooner than I planned, I knew I could never be angry. Because I am just a steward. You really belong to our Heavenly Father. And whatever time I get with you, I will take and cherish it. I love you!!

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