Saturday, October 31, 2009


Home Sweet Home

Just a quick note to let you all know that we made it home...finally. Our 6 day vacation turned into a 16 day trip complete with the last 4 days in a car. I don't want to do that drive again for a while! Milo's limit in the car was about 5 hours a day for the first two days by the last two he would have sat longer but the weather kept us in Kansas and Eastern Colorado longer than we would have liked. All in all we had a great time visiting our friends and Milo saw more pumpkins, horses and baby kittens than he thought possible. I promise pictures soon....

Wednesday, October 21, 2009

Vacation Extended

There is never a dull moment with Milo around! My little guy with a flair for the dramatic told me, an airplane full of passengers, paramedics and ER staff that he DOES NOT LIKE TO FLY IN AN AIRPLANE!! We were supposed to fly back into Denver last night but about 10-15 min into the flight Milo turned blue and had a seizure. Luckily there was a doctor on board, 2 actually, a trauma orthopedic surgeon and a rhumatologist. While Milo's issues were way of their specialties it was a help because people listen to doctors. Before I go any farther into this story I'll tell you that Milo is absolutely, completely fine and as ornery as ever. The flight attendant got out the emergency medical supplies and oxygen and Milo was much better as soon as he got some oxygen into himself. The pilot turned the plane around and we landed back in St. Louis where paramedics came on board on had me carry him out of the plane to the waiting ambulance. He was alert and mad and although his lungs sounded horrible I knew he was fine but since a plane made an emergency landing we went to the closest ER. By the time a doctor saw him his lungs sounded fine and he was his normal self. I called my friend Liz who had dropped us off and she turned around and picked us up again so we are back in Carbondale. Guess we'll be driving home :0) That was one "Milostone" I could have done without!

Lessons learned: 1) if Milo says "no" when asked if he wants to go on a plane, he means it 2) Sea Level + pressurized airplane cabin + rapid ascent does NOT work for Milo 3)Trauma orthopedic doctors have no clue about the airway--he was sure they would put his trach back in 4) Southwest Airlines was very nice about having to turn around, the flight attendants were quick and efficient with the medical equipment & made sure I had a drink & snacks if I wanted them before we got off the plane, all my carry-on luggage made it to the ambulance and the pilot came to make sure Milo was alright. 4) Milo does not travel well in the car at night, it took us forever to get back to Liz's house finally got here at 3am

Milo fell asleep at 6:30 tonight, he was exhausted. I'm hoping he sleeps all night and will be a happier guy tomorrow! We had a great week here and expect to be here though the weekend and the Pumpkin Glow at GreenRetreat. During this last week Milo had a pony ride and loves the horses from the miniture horse to the ponies to the big race horse, has seen more pumpkins than he ever thought existed, has been on several hay rides, has helped out with pumpkin patch school field trips and has fun playing with Logan & Trey. I'll post pictures when I can!

Tuesday, October 13, 2009

All Packed & Ready To GO!!

I think everything is packed. Well except for the stuff Milo needs tonight and first thing in the morning but all that goes in our carry-on anyway. I'm armed with a letter from the pediatrician about his medical equipment and prescriptions and will be looking for a female security person (Thanks Dawn & Alicia!). I have a backpack full of stuff to entertain Milo while we are at the airport and on the plane. We're leaving for the airport about 6:45 tomorrow morning. I know I'm excited to get away, Milo has no clue what's going on. I asked him if he wants to ride on an airplane and he shook his head "no" :0) If I get a chance I'll update while we are gone, if not I'll try to within a few days of getting back.

Here we GO!!!

Wednesday, October 7, 2009

In Just One Week...

One week from today in the early morning I will be dragging my boy (who will no doubt be crabby about the whole experience) though the airport. Navigating the airport & security with Milo, his carseat and carry-on luggage was a daunting thought but then I found this nifty contraption that will attach his carseat to my rolling carry-on and it becomes a stroller he can ride in and all this for less than $'s called theTraveling Toddler Car Seat Travel Accessory and I found it on I tried it out the other day and it seems to work pretty well. I was a bit leery of Milo riding in it but it seems sturdy and he liked it.

Hopefully security won't be too much hassle. I do have to bring his liquid meds that are over 3 oz but prescriptions are supposed to be exempt from the 3 oz rule. I also have to bring his pulse ox and nebulizer machine. I don't trust checking these in our luggage, they could get broke or lost, so I'm putting them in our carry-on, I hope no one has a fit about that. Then there is keeping Milo in his seat on an airplane for 2.5 hours, that should be fun. I know he won't sleep but at least I can attempt to entertain him :0)

Oh yeah, I forgot to tell you where we're going! We are flying from Denver to St. Louis then driving 2 hours to Carbondale, IL to visit my best friend from college, Liz, and her family. They have 2 boys, Logan who is 5 years old and Trey is 2.5 years old. Trey is 6 weeks younger than Milo but a bit bigger. Here's a picture of Trey & Milo in May 2007

Milo was still in the PICU and the boys weren't allowed to be together but though the magic of photoshop we got a picture of the two of them together.

For the last few years Liz and her family have been working very hard at getting Green Retreat up and running. From the pictures I have seen it is a beautiful farm in Southern Illinois with cabins and houses to rent, space for conferences, stables to board horses, space for family reunions and lots more. They even have a pumpkin patch and are doing school field trips right now. Milo seems to love pumpkins so I think he will have a great time at the patch. Check out their website for a better description of all they have to offer :0)

So the next week will involve packing, organizing, trying not to forget anything important and all that jazz. Luckily we are going down to sea level so we aren't even bringing oxygen with us. That will be kind of strange but oh so nice. I'm afraid of what he will do when has more oxygen at sea level. He might not stop moving the whole week! This is also the first time we will be further than an "flight for life ride" from Children's Hospital and that makes me a bit nervous. Liz's mother-in-law is a nurse so that's comforting and they are only 2 hours from St. Louis where there is a very good children's hospital so I think I have all our bases covered.

Wish Us Luck!!!