The Sweet Sound of Laughs and Cries

About 10 days ago Milo went to the hospital for some planned procedures under anesthisia. His ENT doctor took a look down his airway to see how things are progressing. The procedure is called a rigid bronchoscopy, he has had it done many times before but this time we got the most wonderful news. His trachea looks the best it ever has, now that's still a long way from 'normal' but it's a huge step in the right direction. There was no swelling, his malacia (floppiness) is better but not gone and the scar tissue from his big surgery is stable and looks like it will not hinder growth of the trachea. In fact his airway looked so good that they decided to downsize his trach, that's the next step toward getting the thing out for good. He is now in the smallest size available for a kiddo his size, amazing progress!! For those keeping trach he was downsized from a 3.5 Peds Bivona to a 3.0 Peds Bivona. Having a smaller trach tube means that more air goes around it rather than through it. Right away I hear a difference in his breathing, you can hear him breathe through is mouth and nose now :0) More air around the trach means more air available for making noise and boy is he getting used to it. For the first time since March 2007 I have heard my baby laugh, it is such a sweet sound and I never get tired of hearing it. Mostly he just giggles and shrieks, belly laughs are still mostly silent but I'll take those giggles any day. Along with the ability to laugh comes the ability to cry and again for the first time in 18 months I can hear him cry and to be honest it's just as sweet of a sound as a laugh. What I hear is usually whimpers and small cries when he is upset or a little frustrated, the big "I'm hurt" or "I'm really mad" cry is still silent but I'm sure one day those will come through loud and clear too. He also has a new accessory for his trach that will allow him to make more vocalizations. It is called a Passy-Muir Valve, it allows him to breath in through his trach but forces him to breathe out though his mouth and nose. He still isn't fond of the valve but he did wear it for 15 minutes in Speech Therapy last week. It takes some getting used to because it alters the way he breathes, some kids panic at first and I can't say I blame them, but Milo took it in stride. He didn't like it but didn't completely loose it either.

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