Friday, October 31, 2008
Wednesday, October 29, 2008
The other procedure he had done while under anesthesia was an upper GI or EGD to look inside his stomach to see if they could identify anything that would make him wretch so bad after getting fed though his G-tube. Again, good news here, everything looked essentially normal. The doctor felt there was a spot near his g-tube that looked different but not anything of concern. So my no-so-expert opinion is that his old g-tube (Bard Button) had rubbed a spot in his stomach raw causing pain every time he ate which led to the retching. The bard button had a harder plastic mushroom looking part that went inside his stomach and ever since the day it was changed last May he has been miserable, maybe something strange happened when it was inserted, who knows, but it's water under the bridge now. About 4 weeks ago his bard button was removed and a new mini button was put in. This one has a small balloon that gets filled with water inside his stomach so I can image it might be more gentle on the inside of his tummy. It took a couple weeks after the change but now Milo can eat larger quantities of food much faster and has NO retching at all, that has been a huge relief for all of us.
I'll sign off with a list of Milo's new accomplishments:
- is getting good at problem solving, will move a chair or stool to get what he wants
- has learned more sign language, Monkey and Hat are his favorites right now
- babbles like a 6 month old :0)
- can jump in the air and occasionally catches some air
- climbs even higher, found him on the table on top of the computer keyboard the other day
- blows kisses
- can walk down steps holding on to something
- shrieks with delight in a store when he sees something he wants
- pulls things off the shelves in the stores
- shared his toys with his cousins
Monday, October 20, 2008
Milo's communication has progressed so well this week. Not only is he making more noises (and louder noise) he is showing off a few new signs. We have been trying for a long time to get him to use sign language to communicate and he has been, well to be honest, stubborn. I know not a shocker to anyone who knows Milo. He has been signing "all done" for a while now but this week he repeatedly used 3 new signs, "bubbles", "monkey", and "book". We have a bottle of bubbles sitting on the counter and he has to request them by sign to be able to play with them. I'm stubborn on that one :0) he gets to chase the bubbles when he does the sign. He signed monkey while we were at the zoo watching some little monkeys climbing the trees, chasing birds and investigating the water. I was so proud of him and he has consistantly used it ever since. This morning he signed "book" for me. I knew he could do it, he just had to do on his own terms, go figure that :0) I found a great series of sign language videos called Signing Time that Milo loves, we check them out from the library so gets new ones every so often. There are a couple of them that I would buy because he loves them, he is captivated by all the kids and the songs and he is obviously learning from them too. Maybe we will put those on his Santa list.
Friday, October 10, 2008
And this is what looked like Wednesday night...
Now the ventilator lives in the next room with all the other medical supplies
If you haven't guessed by now, Milo is officially OFF THE VENTILATOR ALL THE TIME!!!
Last weekend Milo didn't sleep much at all, he just kept disconnecting himself from the ventilator or would wake up when you hooked him up. There were a few long nights of no sleep and no naps for 3 days, he was a tired grumpy little guy. He had his pulmonology appointment on Tuesday so I mentioned his newest trick figuring they would laugh and say sorry but I did not expect them to say that he could be off the vent at night. What a nice suprise. Instead of the vent at night he now has a trach collar with humidification to keep his lungs from drying out. It is so much smaller but a bit noiser than the vent. It has taken a few nights to adjust it properly and to get Milo used to wearing it. Last night Milo slept soundly for 10 hours and woke up a pretty happy little guy. At first it's a little scary not having the vent at night because I knew it would alarm if anything strange happened and the new contraption doesn't. He still wears his oxygen monitor at night so that is reassuring ;0)
Here's a new list of Milo's recent accomplishments:
- runs, runs, runs
- turns in circles when he is happy
- CLIMBS on everything
- is trying hard to jump
- had his g-tube changed from a Bard Button to a new mini button
- gained weight -- about 2 pounds in 4 weeks!!
- grew about half an inch too
- now gets real food blended up through his g-tube
- makes lots of noise but no words yet
- has mastered two words in sign language--all done & go
- put a 9 piece puzzle together with minimal assistance
- follows simple directions (when he feels like it)
- went to the zoo for the first time, Grandma & Dylan came with us
- went to the Children's Museum with Dylan & trach friends
- learned that hammers are heavy when lifted above the head & air compressors make scary loud noises when you push the wrong button