Standing Tall

Kiya's physical therapist brought us a stander this week. Kiya seems like it. She will stand in is for about 40min if we are interacting with her. The stander does a lot of great things for her. It helps to straighten out her back. She is learning how to bear weight on her legs and feet as well as practice balance and engage her core. I never realized how tall she is because I have never seen her stand. I think she likes feeling like she is more a part of things.

Merry Christmas

We are soooo excited to have our little girl home for Christmas this year. Last year was awful and painful that I couldn't quite understand why Christmas just kept on coming. I still enjoy holding Kiya and spending time with her as much as I did the day that she came home. I think I always will. I will never forget the emptiness of having a child not home with me and I hope to have many happy Christmases with my family. As for this year I got what I wanted and its my family safe, with a little baby girl under my Christmas tree. I have been reflecting a lot lately on the events of the past year and a half. In some ways as time moves forward things become more difficult. I feel the presser and hope of set expectations and dreams. Time also heals old wounds and helps me to cope with new ones. This has been an incredibly hard year as my friends in similar situations told me it would be. There are a lot of adjustment and learning to accept what has happened. You have initial fear of bringing you child home with no monitors, the fear of new medical devices to master, new therapy to implement, trying to become an expert on your child's condition and possible treatment options, most of all trying to paint a new picture and erase the one in your memory. There is the constant guilt and overpowering worry that at the end of the day you just may fail all of your children and be left wishing you could have done more. I think that is an every mother thing. I could not have survived and continue to survive this trial without my family. My mother has been a support system unlike I thought possible. She can read my every heart ache and need without me expressing it and she is there with the comfort only a mother can bring. My dad has been my rock to I stand on when I feel like I am sinking. His thoughtful wisdom has helped me see down many a dark path. My sister flew out when Kiya was born and did the unthinkable by making me laugh. Its that bond between sisters that takes me back to easier times and I need that so much. My brother provided the electricity for his wife to knit the most beautiful blanket for Kiya that I will cherish forever. Of coarse Matt has been the force that calms and my shoulder to cry on in the midst of his own sadness. Kiya is a princess and she knows it. Her dad that treats her like royalty and expects the same from everyone else. I am more like the angy dragon spitting fire at anyone who looks at her wrong, or doesn't acknowledge her awesomeness. All of our family, ward, and friends have been an overpowering support. I look forward to the day when our Lord will come and "all things will be made fair." I cannot imagine meeting the Savior and behold his grace heal my child. I dream of that day and thank my Heavenly Father for strength and my brother Jesus for empathy and friendship. Merry Christmas

Today we took the kids on what is most likely our last walk for the season. It was frigid and I am not looking forward to a long winter stuck indoors. The boys have already started asking me "mom what should we do?"

Kiya is doing good. She is getting ever closer to sitting on her own and now has three adorable teeth. Her teeth are taking an unusually long amount of time to break through because she is not chewing food. I can offer her a biter biscuit, but she doesn't really like them. She does seem to be tolerating her baby food a little better. She still only eats about 1tsp per feeding, but she is doing it quicker. This month her feeding therapist is going to bring a special straw so we can reintroduce liquids. She hasn't had any liquids by mouth since she was five months old. We will also have a swallow study to make sure she is not aspirating anymore. She has figured out how to spit, stick her tongue out and make some new sounds. We are so excited to have her home this Christmas!

The boys are doing good. Mason dreads preschool, but has fun every time he goes. I think his teacher earns her money every month with him. He is still a master tangler and today I found more toys stuck in a vase than I thought possible. Lex is getting big! He is going to pass me up at an early age which he constantly reminds me of. He is still set on being a tornado chaser and loves science. He informed his classmate that Pluto was no longer considered a planet and his teacher told me they call him Einstein.