Another update

Ah the past two weeks have flown by, yet felt like a lifetime. In all I think we were at the er 2x and the doctors office 5x. Kotah had her nose suctioned so many times I stopped counting. Her o2 sats were low and even with oxygen bumped up triple during the day, it still took a bit for her to get better. On Saturday we were in the er again for monitoring because her resting heart rate was at 190. The last time this happened she had those 4 mini heart attacks. The doc said that we are doing everything right. Even though it seems so hard and hopeless, we are doing everything right to keep her alive and that she wouldn't be alive if we did things differently. As hard as that was to hear, it also helps. It helps to know we are doing something right.

There is a doctor out in Chicago that basically wrote the book on the gene mutation that has been discussed before. After some emails with the nurses in the clinic, we are looking at two series of blood testing. We are not sure if it will be covered by insurance and it costs a lot. Thank goodness for tax season!

Now for the fun cutesier stuff:

Katie is loving sunbeams! I think her favorite part is singing time. She comes home singing the songs and asking me to sing with her. She is catching on to sooo much.
She loves being a big sister and likes to help Kotah walk around the room. I.E. holding her under the arms and walking with her.
She got a bike for Christmas and rides it around and around and around the kitchen table. We have taken her outside with it once. She did great!
She loves to pretend that she is fluent in Spanish. We introduce new words to her a bit at a time but I am already thinking ahead to Kindergarten and hoping to find a program that does Spanish immersion.
The other day she stuck a MnM up her nose (I have no clue why) and after a few minutes of calming and nose blowing, it melted enough that it came out. Needless to say, she has not tried that since.
She loves to "surprise" me by cleaning up messes. But she still wants help. So I close my eyes and help her clean up and then get to be surprised when I open them and the room is clean :)

Kotah is almost walking. She keeps trying to stand up on her own and will walk from Ty to me.
 She tries to mimic what we say and sometimes it is so close I am caught off guard. She can say and understand : HI, Please, Thank you, This?, That?, UP!!!, Ada -Daddy for Ty, Dada- what she calls me, Eat, and Boobs. On Sunday we were sitting in a combined meeting and she started pounding on me yelling "Dada, BOOBS!"
 She is a tough little chick and will blow over anything or anyone that gets in her way. Except coming down stairs. She just sits and the top and screams. Three small elongated stairs. We work on going down them everyday. She can go down 7 steep short stairs, but not 3.
She had to have two antibiotic shots today to try to get rid of an ear infection that the oral antibiotics are not touching. They opted to do this as the only other medicine to give her was something she is allergic to. After 5 minutes, her legs had swollen at least 2 inches and had a rash and hives. Of course it would. Sigh. Such a trouper though. She hardly cried.
She is my snuggle bug. She will cling onto me when I pick her up and sometimes she will pat my back. I found her playing with a baby doll the other day, rocking it and patting its back and giving it kisses. So cute!


Our normal has Ty and I pretty worn out. But the precious moments with our girls make it all worth it.