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....

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!

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!!!

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 $15...it's called theTraveling Toddler Car Seat Travel Accessory and I found it on amazon.com 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) http://www.greenretreat.com/

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!!!

Project C.U.R.E.

It is amazing how many medical supplies come along with having a trach and ventilator, not to mention a central line and g-tube! I knew when Milo was going to get his trach out and decreased the amount of supplies I ordered but my house was still swimming in medical stuff. Some of it was just odds and ends but there was a lot of good usable supplies that I refused to just throw out. One day I was pondering just what I was going to do with all these left-overs and one of Milo's nurses from Children's told me about an organization that the hospital works with (Thanks Nicole!). I investigated further and gave them a call to make sure they would take what I thought was a sizable donation. They were gracious and said they would take anything I had to offer. After spending weeks gathering supplies from every corner of the house I had my donation ready to go, 3 boxes & 2 paper grocery bags.

This week I had the privilege of donating Milo's extra medical supplies to Project C.U.R.E. This is a wonderful organization that sends medical equipment and supplies to areas of the world who are in desperate need. I drove up to there warehouse, the big door of the loading dock was open and I was amazed at the size, it was huge. I unloaded my donation in the doorway and what looked so big at my house looked like a meager offering sitting on the loading dock of the warehouse. Several volunteers were busily working inside sorting donations into there allotted bins, it looked like a daunting task. Some of what I could see looked like outdated equipment by our standards but I'm sure it was in fine working order and would help save lives half a world away. There was a sign that said that said the next donation truck was going to Belize, I wondered how long it would take before that load would leave for it's destination. After a few minutes a very nice gentleman came out and had me fill out paperwork about what I was leaving (for tax purposes). He told me that because of the generosity of health care organizations, groups and volunteers a 40 foot container (size of a semi-truck trailer) left the warehouse every week bound for those in desperate need. He said that as big as the warehouse was the stock turned over quickly and about $400,000 worth of medical supplies left every week. As I was leaving he handed me a copy of their newsletter.

Later that day I read the article on the front, I was moved and humbled. One of the places that Project C.U.R.E. donated to was a maternity hospital in India. The article said that at this hospital about 3 in 10 babies were born prematurely. Due to of a lack of resources the babies were placed in metal bins beside their mothers, left to fend for themselves. The mothers and babies would leave the hospital less than 24 hours after birth no matter how small the baby was. Project C.U.R.E. was able to donate several isolets and supplies to this hospital to help these innocent babies have a fighting chance.

Stories like this make me realize just how lucky we are to live in a country of such privilege. If Milo were born in a country like that he would not have survived more than a few hours at best. At times I complain about the health care here and insurance and equipment suppliers but I need to remember it is a privilege to have access to medical care, the availability of insurance and public aid. There is considerable talk about our "broken" health care system in this country and don't get me wrong it definitely needs some work but this week I am just overwhelmingly thankful that in our country we have access to such wonderful hospitals equipped with the latest technology, doctors, nurses and other health care professionals. I hope our meager donation will help to save the lives of a few people around the world or at least improve their well being just a little.

If you get a chance please check out the website for Project C.U.R.E. (www.projectcure.org) If you have any extra medical equipment setting around your house think about donating it, there are donation centers around the country. If you are able, a monetary donation will help them with the shipping costs. If you have some extra time consider volunteering and please spread the word to your friends, co-workers and family about this wonderful orginazation.

Little Monkey

Friday we had the freedom of not having a nurse. You see when we have a nurse it is a great help but things have to be done on a schedule. There is a little bit of room to wiggle but not a whole lot. So we had a lazy day, a slow start to the day. After our rather enjoyable morning we set out to investigate a new place to play. I had head about it a few months ago but we just hadn't made it there yet. This new place (or at least new to us) is called Little Monkey Buziness, it is designed for kids from crawlers up to about 6 years old. There is a large play area with several different playscapes, an art room, a party room, a snack bar with smoothies and coffee for the big people as well as some snacks and they have free wireless internet. All that for a reasonable $7.50 per kid to play as long as you can stand it. When we got there around 11:30 there were only about 3 other kids, so it was great for us to be able to explore the equipment without having to worry about holding up other kids or big kids being too rough. Milo found a little boy and girl (twins) close to his age who he played around quite a bit, found out they just turned two but both were bigger than Milo :0) We stayed a little over an hour but then it was time to head home for lunch and a nap, it was definately time. We had great fun and plan on going back for more fun in the future! Next time we'll get there a little earlier so we can stay longer.

Here's a little video I made about our adventure. Some of the pictures are not that great and it's my first attempt at making a video with windows...Enjoy.

a boy, some dirt and some water...

I JUST LOVE MUDDY TOES!!