KIYA'S JOURNEY

Thanks to Mariangel this video and the music are finally attached. Enjoy!

Happy Birthday!

Lex turned the big 6 last week. I can't believe he is that old. I keep telling him how much I remember him as a baby. He doesn't seem to like that anymore. Already getting so mature. For his birthday we went to Jungle Jim's for a heaping helping of fun and other kids germs. It was a great time. The kids played while me, aunt Steph and Grandma Squishy tried to shield our eyes from the PDA couple right by us. That evening we had cake and ice cream with all the family. I think Lex is the only kid who ever requested that his birthday cake be a "molecule" cake. Here was my best attempt. Each kid got to pick there own molecule to eat. Lex is going to pass up my intelligence level by next year. He just might pass up my height as well.

Kiya was such a trooper on his birthday. She is easily overwhelmed, but surprisingly she held out with all of the noise and chaos at Jungle Jim's. I am pretty used to bringing her food in a back pack and "hooking her up" to feed her now. As a lot of my friends have told me it is my new "normal." We are still trying to offer he small tastes of food on a daily basis. Some days she does better than others. She is doing great in so many areas. She holds up her head really well now and can hold onto her feet for a couple of seconds. Sometimes she even seems like she wants to sit up. Mostly she knows that Matt and I would walk on hot coals for her so she lets us do a lot of heavy lifting.

Poor Paige was playing a game that Mason was obsessed with. He did his best to be patient.

Yum

Happy Birthday Dad! Today Matt is another year older and oh what a year it has been. We went to lunch and took Kiya. She was a perfect angel! Minus a few looks while we were "feeding" her we felt pretty normal. Matt said that he got what he wanted for his birthday. It was Kiya being home from the hospital. This week we went to a new feeding therapist that they call "the baby whisperer." Kiya experienced her first bite of baby food. It was pears mixed with formula. I think I had built the moment up so much in my head that I was bound for disappointment. I guess the positive was that she didn't immediately spit the food out. The therapist showed me a technique of using her Binky with the food to get the food farther into the back of her throat. Right now she has only developed her tongue thrust so she just pushes the food around in her mouth. I have begun feeding her baby food every time that she is awake and she is getting milk down her g-tube. I have a feeling this is going to be a long process.
Physical therapy is a constant in our home. I could spend my whole day doing stretches and exercises with Kiya. I know it isn't feasible and yet the guilt never goes away. Her physical therapist is happy that she is bringing her hands "mid line." Basically that she is bringing both of them to the center of her body. Kiya has a bilateral brain bleed. This means that bleeding occurred on both sides of her brain. because of this we are constantly watching her body movements and making sure that everything is balanced. We are also working on head control and strengthening her core. I do some feet rolls every day to try and introduce her feet to her. She hasn't quite discovered that they are there yet. I am hoping soon as she is supposed to be playing with them. Our next big thing is getting her to roll over. Honestly that seem so far out of reach right now.

I have been in contact with some other moms in my boat. It has really helped to hear there experiences and feel like somebody out there actually knows what i am going through.

We went to the pediatrician today and had more immunizations. Mason held Kiyas hand and she did not even wince. I felt a little bad like she has experienced so much hurt in her life that the shot didn't even faze her.

Glad that we have made it this far!