Update

Things have been so wonderfully crazy since Kiya has been home that I haven't had time to write. There is a lot that is so normal about our life now. Diaper changes, bath time and playing dress up. It is great to not be driving to Primary Children's everyday anymore. Man I don't miss that place. Had to go there on Thursday for an eye appointment for Kiya and I had some major anxiety walking into that place. We have another eye appointment in two weeks because her retinopothy isn't fully resolved. Hopefully next time. Tomorrow is the pediatrician, then neurosurgery and a feeding specialist this week. I am beginning to realize what so many parents with medically fragile children's lives are like. The feeding specialist came to our house last week. I really like her. She addressed my concerns and for now we have stopped feeding orally. Kiya can suck, swallow and breath, but has poor coordination doing them in order. Feeding has been a real negative for her. For now I feed her through the NG tube and she is gaining weight adequately. I cannot wait for the day when she can take a bottle. There are so many things that I took for granted with Lex and Mason. The feeding therapist will be back next week and we will continue to try different methods. It is great to have the Kids on the Move program in Utah. I have therapist with different expertise coming to my home weekly to help Kiya. What a great program! Matt and Amanda came over to see her today. I LOVED being able to show her off. How long it feels like we have waited for to be able to do that. Amanda knitted her the most beautiful blanket that took 4 months to make. What a keepsake! I swear I am going to cry the first time Kiya poops on it. Kiya will have an ultrasound at her next neurosurgery check up. They will be checking the ventricle size and making sure everything is draining the way they would like it. She has to sleep at a 45degree angle to keep her csf draining properly. I tell her she is going down a slide and she seems to like it. Lex and Mason have done great with her home. Lex loves to hold her and Mason totally ignores her. This is actually a good thing because I was a little worried about what he might do to her when she got home. Today Lex let me have it because I kissed her. "Don't you know you have germs in you mouth?" Lex said. He wasn't too happy with me, but really I am going to kiss my baby and no one can stop me. At the hospital I wasn't allowed, but I didn't think I would get in trouble at home. Life is good! three kids is a crazy adjustment as anyone will attest, but not having her home was much harder. We cannot wait to bring her outside. She cannot leave the house until May so I will probably need to be institutionalized by then. Thanks again for all the love and support. Your prayers got us here!