Wednesday, April 15, 2009

Another Milostone

In the past when Milo was sick he wasn't just a little sick he was dramatic about the whole thing. He didn't get a cold, he got pneumonia. He didn't get a little infection he got a blood infection. He didn't get a little scar tissue, he got enough to almost close off his airway. He didn't get strep throat, he got antibiotic resistant bacteria growing in his trachea. He doesn't have seasonal allergies, he has major food allergies. The nurses (and probably a few doctors) in the PICU called him the Drama King and were on the hunt for his crown.

This week Milo got his first normal, run-of-the-mill childhood illness--a double ear infection. The doctor asked if he was allergic to amoxacillin. I told her he had never had the "little" antibiotics before, he always went for the ones reserved to fight big nasty infections that could be life threatening and usually got them in combinations of 3 at the same time. She laughed and said to watch for hives and call if he got them. Well, so far so good. No rash, much lower temperature (although not normal yet) and back to his old self. He felt so bad yesterday he fell asleep on the floor of the exam room at the doctor's office, poor guy.

Monday, April 13, 2009

I'm Dreaming Of A White....EASTER?!?


We went to Alamosa for Easter and woke up to snow on Easter morning. It snowed most of the day. In fact it snowed more than it did at Christmas. Go figure...



The Easter Bunny braved the snow and freezing cold temperatures to leave a few treats for Milo. Note the pink pig, the bunny knew just what to bring.

The Bunny had to hide the eggs in the house this year. Milo was interested for just a few minutes. He had an egg in each hand and was done :0)


We had a great Easter Weekend. Our adventure started on Thursday when we went to Colorado Springs to welcome my Grandparents (Milo's Great-Grandparents) home from Texas where they spend the winters. We met them & my aunt at the airport and went to my aunt's house where we spent the night after a nice dinner with more aunts, uncles, cousins & little cousins too. Milo played with the little girls and had lots of fun. Friday we continued on to Alamosa and arrived there just after lunch. We relaxed in the afternoon and did a bit of shopping. I finally found some jeans to fit my skinny little dude, Wranglers of course, size 1T slim with an adjustable waistband. Finally pants that stay up. Check out how cute they are!
Saturday we went to Uncle Chad & Aunt Melissa's house to dye Easter Eggs with Brett, Dylan and Owen. Milo had a blast. He ended up with one yellow hand and one green hand. His skin dyes better than the eggs! Later that afternoon we dyed eggs with Grandma too. This time he prefered to have a blue hand...
Grandma & Milo

Owen very proud of his yellow egg.
Dylan & Brett working hard.


Check out these Easter Cuties all dressed up and having fun hunting eggs...

Owen

Dylan

Brett & Milo

Monday, April 6, 2009

Piggy Tails



For some reason Milo has a fascination with pigs. Stuffed pigs, toy pigs, pictures of pigs, cartoon pigs, and pigs on TV. The only pig I’ve seen that he didn’t like was a guy from a barbeque place who was dressed in a big pig costume; he was handing out stuffed pigs at the hospital. Milo ended up with three of the barbeque pigs since he was in the hospital so long. These pigs are his prized possessions; unfortunately I think we lost one the other day, oops. In January we ventured out to the National Western Stock Show. We found the animal petting area and waited in line. Milo had no idea what we were going to do and was a bit impatient. As we passed the big huge sign notifying everyone of the possibility of e. coli I wondered if this was a good idea but I knew he would love it so doubled checked to make sure his trach cap was securely on and we continued. I bought an ice cream cone full of animal feed and we ventured into the pin. OK so the food probably wasn’t the best idea, there was one bully of a goat who jumped up on me to get it and scared Milo a bit. Once the food was gone I put Milo down and he didn’t know what to do. I guided him over to a small fenced in spot that had ducks, another of his favorite animals. He LOVED them, and then he discovered the goats but was not impressed. A sheep walked by and he tried to pick the bedding out of it’s wooly coat, my guy likes to be clean :0) He was standing right by a pig but had no idea what the animal was, it wasn’t pink like all the pigs he had seen in pictures, it was grey. I kept telling him it was a pig but he didn’t believe me. He finally noticed it’s curly little tail swinging around and tried to catch it, poor pig. I directed him to the front end of the pig and Milo squealed with delight. He sat right down on the floor where the pig was snorting in the bedding and blowing it around. Milo put his face right in the pig’s face & I’m pretty sure he ended up with pig slobber on him but he didn’t seem to care. He was so EXCITED I thought he would poke the pig’s eye out. After several minutes I had to drag him away, other kids wanted access. I tried to distract him with the huge llama that was sitting right next to him, no interest…the donkey, nope…he found another pig to accost…I decided for the animal’s sake it was time to go. We went straight to the hand sanitizer cuz e. coli isn’t something to mess around with, especially with a kid who has an open airway and a slightly depressed immune system. Unfortunately there were several people who did contract e. coli at the Stock Show.



video


After the animal petting adventure we wandered around and found pony rides. Milo was on his uncle’s shoulders when we walked into the area with the ponies. Again he squealed very loudly pointing at the ponies. Several people turned around to see if he was alright, then smiled with the realized how excited he was. His happy noises and his hurt/mad noises sound a lot alike. This line was even longer but I gave in. After a very long wait it was our turn. I sat Milo on a pony and he tried to get off. A guy came by, strapped him on and shortly the pony began to walk around the circle. The look on Milo’s face was priceless, he was worried and then excited all in the span of about 10 seconds. He had a great time and the experience was a success!


We adventured outside to the corrals so Milo could see some big cows up close and personal. The only animal sound he really makes is a “mmmmmm” sound that is supposed to be a cow. Of course he had his Carhart overalls on and it made for some really cute pictures.

Wednesday, April 1, 2009

No Joking, It’s April Fool’s Day

April 1 has come with some very important steps in Milo's world. April 1, 2007 Milo was flown to Denver for what would become a very challenging year. April 1, 2008 Milo finally came home from the hospital for good. It's now April 1, 2009 and Milo has been home for one whole year!! It has gone by so fast, he has grown so much & life has changed in innumerable ways.


This afternoon we took some treats to the hospital to celebrate this "Milostone". Everyone was amazed that it has already been a year and we all reflected on his time in the hospital and how much he has changed in the past year. We saw one of the physical therapists who visited Milo once in a while and she was amazed that he was unattached so he proceeded to show off and run down the hallway. One of the nurses on the floor was a nursing assistant in the PICU when he first was admitted (2 years ago today) and she reminded me how tiny he was and how medically fragile he was. Poor Susie freely admitted that he terrified. Look at him today and you would never guess :0) In January The Children's Hospital opened up a new Pulmonary Unit on the 9th floor. This is where all of the trach/vent kids go now and most all of Milo's regular nurses moved up to this floor as well. Today one the nurses gave Milo a new t-shirt that features the Pulmonary Unit.


It is so funny how much Milo feels at home in the hospital. I am so glad he doesn't have a fear of doctors or hospitals, lots of complicated kids like him are terrified of all medically related things. The Child Life person came by, she had toys in her hands and he weaseled them out of her. It didn't take much really, just a smile and some cute noises. She had an Elmo toy and a barn, of course the barn won out because it came equipped with a pig. His little delighted noise made every one laugh when he finally got his hands on the pig.



Here are a few of the changes that have occurred over the last year. Then being April 1, 2008 and Now being April 1, 2009.

Then: 16 pounds 12 ounces

Now: 21 pounds 2 ounces


Then: 28 inches

Now: 32.75 inches

Then: Not much hair

Now: Oodles of curls




Then: Crawling

Now: Walking, running, climbing like a monkey



Then: Ventilator dependant 24/7

Now: Breathes all by himself

Then: Oxygen dependant 24/7


Now: Oxygen only while sleeping



Then: Hooked to lots of tubes and cords 24/7


Now: Only at night and only a few



Then: Took us at least 30 minutes to get out the door


Now: Takes less than 3 minutes



Then: Trach tie had to be changed every day or his skin would break down

Now: Can go a week without a change



Then: Horrible eczema


Now: Under control



Then: Communicated with a few noises


Now: Communicates with lots of sign language, noises and a few word approximations



Then: Tolerated his carseat for 10 minutes maximum


Now: Likes to ride in the car and look out the windows



I'm sure there are many more changes that I just can't think of right now :0)

Enjoy the slide show of Milo's First Year On The Outside (it may take awhile to load)