Thursday, June 19, 2008


Yup, Milo had blue lips but they were an alright kind of blue lips. He had a blast playing in the water outside today. This spring I found the best water toy for toddlers and bought it, Milo has been studying the box just waiting for the chance to play with it. The weather was warm (ok, it was down right hot) so out of the box the pool came. He wasn't too sure at first but quickly warmed up to it and dove right in. He has no fear of getting wet, not sure that's a good thing for a trach kid though. The pool isn't deep, only a couple of inches and the rim sprays water. He liked the slide and didn't even seem to mind the sprinklers at the bottom that almost got his face. Despite the heat cold water chills a boy and the lips showed it. By the time his chin was shivering he was done playing and walked himself back into the house and looked at us like "aren't you coming"? I think I found his favorite summer activity, sounds like this little pool will get a ton of good use.

Monday, June 16, 2008


The pitter patter of little feet accompanied by the beep of the ventilator followed by a large sigh from every adult in the house. This is the scenario that plays out countless times each day in our house. Milo is officially a walker; he has been for several weeks now. In fact he is getting quite good at it. His favorite activity is to pull off his circuit and RUN down the hallway. He is quick and if you don’t chase him he will get into his bedroom then peeks out to see where you are. Usually we are fumbling with his ventilator trying to untangle cords and oxygen tubing to get the vent down the hall. If he is feeling especially ornery he will run to the bathroom and put his bath toys in the potty. This past weekend we got sod installed in the backyard and Milo was so cute running across it. He wasn’t too sure he liked the feel of the grass on his feet and between his toes at first but he got over it! Outside is the same, he pulls himself off the ventilator but he has so much more room to run in every direction. I will say we are not always as quick as we could be to hook him back up, he seems to do fine off the vent for a few minutes but we are not pushing the limits to find out how long :0)

Going back a little bit—Milo had surgery to remove some scar tissue from around the hole in his neck and they replaced his g-tube at the same time. He did pretty good with surgery but his lungs were kind of yucky for a little over a week so we ended up at the ER for a quick visit. He had a chest x-ray to make sure he didn’t have pneumonia and they took a quick look down his trachea to make sure that was alright. After 4 hours and no real answers we went home with some extra steroids, an inhaled antibiotic and an appointment to see the pulmonologist. Basically I learned to call the doctor in the morning if I have concerns because if you call too late to be seen in the clinic they make you go to the ER. After 5 days of increased steroids and 2 weeks of the antibiotic he seems to be doing much better and he is as ornery as every! After the g-tube change it took his tummy some time to adjust to the new g-tube because it functioned properly. The old one had a malfunctioning valve inside that is supposed to keep the stomach contents inside him. It leaked all the time but it also allowed extra air out of his belly. The new one doesn’t leak but we learned that we have to “vent” him now to let the air out, we hadn’t had to do that for at least 8 months so that took some getting used to for all of us.

Milo finally has a speech therapist; she started working with him last week. I could tell that he is interested in making noises and words so I insisted that we get speech therapy set up. We are still waiting on physical and occupational therapy, the organization we are working with for his therapy has been very slow so we just might find another organization for his physical and occupational therapy. I am so excited about his speech therapist, she is wonderful. Milo was very glad to play with her and excited about the toys she brought with her. She is also going to work on eating with him. I keep telling everyone that he would panic if a chunk of food got in his mouth, either chunky baby food or a rice puff. Of course the end of last week he started eating a few rice puffs, he picked them up and put it in his mouth. He still makes a funny face but he swallows it and he’s totally fine with the Stage 3 baby food we had for him. Go figure, he made a liar of me once again but I’m alright with that! He is drinking a little bit from his sippy cup again so progress is being made.

I can see the new things that Milo is learning all the time. He is starting some pretend play by sharing his pacifier with his stuffed Mickey Mouse and giving hugs and kisses to all his stuffed animals. His hugs are really just laying his head on the animal and kisses are putting his mouth to the animals face. TOO CUTE!! He is still obsessed with toes and feet, his and everyone else’s. He actually bit my toe the other day; I couldn’t get mad at him because we are so excited when he puts anything in his mouth. Luckily he doesn’t do that very often and only to me (so far). He learning to roll a ball back and forth with someone and rolling his cars on the floor or table rather than just spinning the tires. He is into climbing now. He climbs on the edge of his toy basket to empy the shelf on the entertainment center and climbs on his suction machine to get onto the couch. Luckily he has learned how to safely get off the couch but I don't trust his too far yet.

Well I’d better go for now. Milo’s vent has been almost constantly beeping while I escaped to write this so his nurse is probably very tired of chasing him around :0)