Update

As predicted July was a busy month but were hanging in there. I am still spitting constantly. I get dry mouth so we know that the botox worked, but my spitting is more like phlegm from the throat. A few weeks ago it got so bad that Bob was having to suction my mouth 7-8 times a night and it was yellow in color so we went to urgent care over the weekend. My chest X-ray was clear of pneumonia but had a spot of either fluid or the beginning of another section of my lung that is dying from lack of use. the urgent care Dr. prescribed antibiotics because she said that I could have an infection starting in my throat if I am aspirating. The antibiotics quickly cleared up the excessive spitting and brought it back down to my normal constant level. It started to get worse again this past week so my neurologist called in another antibiotic Rx and has scheduled me to see a pulmonologist.

My breathing has continued to worsen. I typically only feel like I'm breathing normally when I'm on my bipap, outside of that I struggle to varying degrees. In addition, I have lost some of my hand/arm control this past month which has made driving the wheelchair difficult and unpredictable on occasions. I should take a picture of the 6" hole in the drywall as testament to my lack of driving control :)

Joshua is doing great! He is quickly brushing up on the art of tantrums in preparation for his upcoming second birthday. He will throw tantrums over undesirable food choices, when service in toy or food delivery is too slow, if he gets tired of a particular toy, ect :)We know we aren't supposed to laugh but it is sometimes funny watching him get so angry when he doesn't get what he wants. Down syndrome or not, he has mastered the arty of manipulation :)

Joshua had a Modified Barium Swallow (MBS) at Phoenix Childrens and he is silently aspirating. The speech pathologist said hes aspirating because his muscles aren't strong enough to control which direction the fluid goes down and he will out grow it in time as his muscles develop. This means we need to add thickener to his milk. Like his Pediassure the thickener isn't covered by insurance and is quite pricey. Fortunately, his DDD caseworker had a bunch of samples of both that should last us a couple of months. Joshua will repeat the MBS every 3 months until he is no longer aspirating.

In all of this excitement are air conditioning went out and we had to buy a whole new unit. Fortunately, there was room at Hotel De'Mandi. It was quite a sight loading up all of my equipment, 2 dogs, 2 kids and myself but we were very grateful for our stay since it was over 113 that week. We were a bit panicked and scrambling over the unexpected $7k bill, but thanks to help from some of our parents we were able to cover it.

Tana is getting ready to start her senior year next week. She is really not looking forward to school starting but we keep reminding her that there is light at the end of the tunnel since college is completely different than high school.