Both girls continue to be healthy and active. Maya is STILL drooling an unbelievable amount. I am simply counting the days until her ENT injects that botox into her salivary glands. We recently learned what Maya needs to accomplish medical-wise prior to getting her trach out. First of all, she will need to tolerate receiving Oxygen at night (she only needs it at night) in a method different than she is receiving it currently. Now, she receives her O2 through her mist collar (which simply is a small mask that goes over her trach and humidifies her airway at nighttime). However, without a trach, she cannot use the mist collar. Instead she will need to use a nasal cannula. I am not sure if any of you have used one of these (I know some of your kids have), but I just wonder if Maya will put up with little prongs tickling the insides of her tiny little nares while she is sleeping. An O2 tent was mentioned once as well, but I can only fathom how much that would cost!!! Needless to say, after Maya's procedure in January (esophageal dilation and botox) she will begin nasal cannula "boot camp." She will be given O2 through the collar AND cannula, which means two large O2 tanks in her room (remind me not to burn any candles near her room!)
THEN, she will require a sleep study. This means she will spend the night at Children's hospital in Seattle, with numerous wires attached to her while she sleeps. However, she will also NEED to have her trach capped, and tolerate her nasal cannula along with all these wires, and not have any signs of distress...sounds a little impossible to me, BUT it HAS TO HAPPEN for her to get her trach out!!!
But, can I just tell you how cute she is! I got a sneak peek in her preschool class today (her formula spilled before school even started, so I had to bring in more, and was invited to stay awhile...which I can NEVER turn down an adorable group of 3 and 4 year olds, who mostly sign better than I do). As soon as I entered the room I found her in her favorite spot...painting at the paint easel...she was painting some green masterpiece! She spends a great deal of her time with her para educator with signing cards and pictures trying to work on communication. She even got some one on one time with the speech pathologist too. Then she just walked on over to where all the other kids were and sat at the table in the house keeping center and pretended to eat food right alongside them...pretty great stuff for a kid who does NOT eat with her mouth.
Later I moved to the books with a few other kids, and of course, over came Maya eventually and she decided to "plop" herself in my lap. I just love being in class with her...she is definitely not at all where the other kids are academically or socially, BUT she is learning so much and school is a wonderful experience for her. AND, it doesn't hurt that all the kids really like her!
Addy is doing great too! she has learned some new signs "tree" for Christmas tree, and our newest favorite is when she does the applause sign. You raise both hands and move your hands by twisting your wrists, and we always say "yeah"...it is just adorable...last night Maya was sitting at dinner with us and tasting some of the food, and Dean and I did our ASL "Yeah, Maya" signs, and Addy, quite proudly imitated us! She simply could not LOVE and ADORE her sister more!
