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!

They fell, but o'er their glorious grave
Floats free the banner of the cause they died to save.
~Francis Marion Crawford

I am so glad the the warm weather is coming! When you start feeling and looking like Gary Busy it is time to get out of the house. Poor miss Kiya has been sick for the last week. I am so glad that this is her first sickness. It amazes me that she never got sick in the hospital. She has a cold/stomach bug. With a g-tube this means vomiting six to eight times a day. When kids get sick they don't want to eat as much. Unfortunately Kiya is tube fed so the only way she can tell us to not feed her as much is by vomiting. The last while we have been feeding her pedialite through her tube. She has tolerated that very well. We are now introducing milk and formula back into her diet. I am so glad she was just sick. I was worried that there was a problem with the g-tube, or that she might be having another allergy of some sort. Things seem to be getting back to normal. Next week we get her weighed. I hope she is actually on the chart this time. She will definitely not have a weight problem that's for sure. Lex is done with Kindergarten soon. I must say I am glad. I cant believe that he will be in first grade! I myself am on a first grade level so I think things well get pretty interesting next year. Mason continues to let me have it with his personality. He unfolded five loads worth of laundry yesterday and scattered it neatly across my room. I bought some band extensions to see if I wanted to cut real bangs. When I showed Matt he said I looked like Fryar Tuck so I decided against getting them chopped. In June we get to introduce baby food into Kiya's diet. I am really hopeful that she will like it. Right now she takes a very small amount of thickened milk by mouth. She is getting a little more used to the idea of having things in her mouth.

Family Pics

We finally did it! A couple of days ago we had family photos taken. It was a very crazy day filled with me chasing Mason half way across the park and trying to convince my kids that they needed to smile. Kiya wasn't too happy so we didn't get a lot of her, but we will have more taken soon.