Brighter days :)

We hope everyone had a wonderful Christmas, and happy New Year! 🙂

We felt so very lucky to celebrate this past Christmas together and are so thankful for every day that comes that we get to spend with our sweet girl. Alyssa loved opening all of her presents and even helped her big brother Jake open his. It was a quiet day at home but it was one I will cherish forever.

We recently celebrated Alyssa being 300 days post transplant. Yay Alyssa!!! We are so close to her one year date, March 15th. As excited as we are, we unfortunately know that she is not out of the woods, but I will not allow myself to focus on the negatives. Each day is a celebration and every time I look at my baby girl, I am amazed at how far she has come.

Miss Alyssa is changing every day. She is now 2 inches taller, speaking more words and forming sentences. She still loves to sing and dance around the room, especially when Sesame Street is on the television. She is a wonderful helper around the house, and is such the little comedian. Her personality just shines and I absolutely adore her. She loves to give hugs, big squeezes, and pats you on the back so gently, or rubs the side of your face. If you are sad or if you hurt yourself, she is the first to say a big, “awwwwwww” and runs over to give you the biggest hug and kiss. 🙂 We are just enjoying “normal” days together. They can still be a bit hectic, hospital visits, all the medications she needs to take throughout the day at certain times, her lovely temper tantrums that are brought on by the steroids, etc. It will continue to get better and get easier and I don’t take any day for granted. There are nights where I will stay up for hours, just watching her sleep beside me in bed. Some nights I cry, because I am so grateful but also so sad that she had to endure so much to get to this point. Every day I get little glimpses of the woman Alyssa is going to be when she grows up. Yes, Alyssa will grow up, and she is going to do something spectacular with her life. She is sweet, loving, caring, and gentle, but she is also feisty, strong willed, so determined with everything she does, she never gives up. Even when she is trying to tell you something, she will repeat it over, and over, and over, until you acknowledge what she is saying by saying those exact words. You can’t talk about anything else, cannot move on, until you say those words and understand her. When you do, oh my goodness, she lets out the biggest, “oooohhhhhhhh” , like you finally got it, and sways her head from side to side and laughs. She is just awesome! 🙂

We are heading back to Memphis this coming weekend. Alyssa’s bloodwork has been good, her liver enzymes have also come down, one of the numbers is actually almost in normal range. That hasn’t happened in almost a year. Alyssa will be having routine bloodwork done, a visit with her doctors and a vist with the pulmonary doctor for a follow up visit.

Alyssa’s breathing has improved. She’s still breathing faster than she should be but she is better than what she was. We are hoping to continue weaning her off of her immunosuppressant and steroids. Once she is off of most of her medications, we can probably take near NG tube out of her nose. She has been living with a feeding tube ever since she was diagnosed at the age of 5 months. Almost 2 years she has lived with one, I couldn’t imagine. I can’t wait to see her beautiful face without that tube and tape on it.

Almost 2 weeks ago, Alyssa’s central line that is in her chest, developed a hole in it. Her line is how they draw blood from her, put in any IV medications and fluids. Luckily, the hole was on the outside and near the bottom where they draw the blood from. I was a nervous wreck, scared that if the tiniest piece of anything got into her line, it would go into her bloodstream and she would be at a high risk for a blood infection. Then I worried that the line would not be able to be fixed and the doctors would need to pull it out. That would not be an ideal situation since she still needs to get regular bloodwork, with her breathing issues and her liver counts still not in normal range yet. So, the next morning we went to the hospital and the surgeon there just snipped off the part that had the hole, and attached a new piece, reinforced it with some special glue and left. Seemed too easy to me, but it works and that is great! Then we received the good news that as long as Alyssa’s breathing doesn’t get worse, we can now stop going to clinic every week but start going every 2 weeks. Yay!!! I was thrilled to say the least.

So now we wait for our trip to Memphis, hoping for all good news there. Alyssa will be having her chimerism test done again, fingers crossed! Alyssa is so excited to see her special friends at St. Jude, Lane, Pam, Deborah, Rita, Katie and so many more who we can’t thank enough for making St. Jude, our home away from home, that much more special.

If you would also like to follow Alyssa on Facebook you can send a friend request to Alyssa Riley McLintock. Its easy for me to post pictures and quick little updates about Alyssa on there. 🙂

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