Tuesday, July 15, 2008


Yesterday evening Milo and I went into the backyard to water the grass. It was probably around 8:30, still light but finally cooling off a bit. Milo had a great time running though the grass, it was so nice to see him enjoy a "typical" kid activity. I decided to join him, we sat in the grass and rolled around. I lifted him the air and pretended he was a airplane, he had the biggest grin on his face. I was so nice to just enjoy the evening and watching him play without having to worry about oxygen tubes, ventilator circuits disconnecting and whether or not he was breathing well enough. Care free is the way to be and I see more and more of it in our future!

Along with the fun stuff comes the more typical toddler behavior too. My phone ended up in the toilet yesterday. When he is free to roam he must be watched closely around the potties. He was in my bedroom playing and wandered into the bathroom, he doesn't get in there very often so he was exploring, I caught him in the shower investigating the drain at one point. Shortly after that I saw him head toward the potty with an item that was beside the bathtub so I rushed in to intervene. I discovered that he had already dumped an empty shampoo bottle into the water, "Oh well," I thought "no big deal" and I fished it out only to uncover the telephone had sunk to the bottom. I pulled it out shaking my head thinking "I guess this really is my fault," and set it in the sink. This morning I went to assess the damage and it seems to be in working order. It was asking to be charged. I haven't used it yet but it looks promising! At least it wasn't my cell phone, I have 2 other extensions on the house phone I can use :0)

Tuesday, July 8, 2008


It may have been Milo’s second 4th of July but it was his first Independence Day. Milo had so many Milostones over the holiday weekend I’m not sure I can remember them all. We went on our first vacation, to Alamosa to visit friends and family. Milo did incredibly well considering it was his first long car trip, the first time he was in another house, his first large family gathering, the first time he played with a baby younger than himself, the first time he met his great-grandpa, the first time he sat on great-grandpa’s tractor, he got his first scraped knee and elbow while playing outside, his first parade, his first fireworks, his first time being outside after dark, his first car ride in the dark, his first church service and I’m sure there were so many more firsts that I just can’t remember right now.

I wasn’t sure we would be able to make the trip even though we had been planning it for a while now. The weekend before Milo had a nasty stomach virus that landed us in the Emergency Room and finally admitted to the hospital for some IV fluids to rehydrate him. It was a short stay, only 2 nights, but we got to see many of our friends, nurses, and doctors. Milo came home on Monday but he still wasn’t feeling quite like himself, his stomach still bothered him but he is a trooper and made it though the worst of it. Aunt Peggy was our chauffer and we decided that we would try to make the trip and if we had to turn around we would. On Thursday we left Aurora at 1:45 and arrived in Alamosa at 6:00 with only one stop in Walsenburg to stretch our legs. Milo did very well, I wasn’t sure how he would react, if his stomach would bother him and how he would tolerate being strapped down for that long. We got to my parent’s house and Milo was very confused about where we where and why Grandma was there but he took it all in stride and in no time was exploring the house. On the 4th of July we went to the parade in downtown Alamosa, Milo seemed to like it except for all the fire trucks at the end who set off the sirens at the same time! After the parade we wend back to Grandma & Grandpa’s house for lunch where Milo had a great time playing with all his cousins. That night we went to the fireworks, I wasn’t sure how Milo would react to the loud noises but he didn’t seem to care and got board in the middle of the display. Saturday we had a little get-together for people to come meet the little miracle they had prayed so much about. Again he took it all in stride. Sunday we went to church where he fell asleep half way though the service. After lunch and a flury of packing we left Alamosa at 4:00 and arrived in Aurora at 9:30. Milo was less patient with the trip this time. He was way to tired and just didn’t want to be held down so we ended up stopping several times to avoid complete meltdowns because those are not pretty in Milo, they involve blue lips and strange breathing. Yesterday and today Milo has been more tired, trying to recover from the big weekend I imagine, I know I am still trying to! Our nurses are also on vacation this week so we only have 2 day shifts covered but we also have 2 night shifts covered because a couple of Milo’s night nurses from Children’s are helping out when they can. I think I might be exhausted by the beginning of next week!

One of the best things about our vacation is that Milo was able to be off the ventilator for several periods of time during the day. The week before we left Milo had a pulmonology appointment where they decided to let him try periods of time away from the ventilator and the carden valve. He just has a little “artificial nose” covering his trach to filter the air and trap some humidity so his airway doesn’t dry out. His oxygen has been decreased to ¼ liter while on the ventilator and in Aurora he generally doesn’t need oxygen while using his “nose” but in Alamosa he certainly did. 2000 feet higher in elevation does make a difference. All the kids were so good about untangling his oxygen tubing and making sure we knew when Milo pulled it off.

Milo finally has a physical therapist; in fact it’s a husband wife team who came today to meet him. They are excited about working with him and were impressed that he can do all that he does. They are primarily going to work on balance with him because he still doesn’t walk in a very straight line. Next week we have an occupational therapist coming to start working with him. He has had a speech therapist for a few weeks now so I think now we finally have all his therapies going again, it only took 3 months.

Well better go for now the little guy has just awoke from his nap and the thunder has him a little bit concerned. He doesn’t seem scared just a bit concerned about where that noise is coming from. I’ll try to get more pictures posted soon!