Wednesday, December 30, 2009

2009 In Review

Hey Mom, how do you update my blog...I'll do it!!
I can hardly believe that 2009 has drawn to a close. I've been thinking about my favorite memories of this year and thought I'd share some of them with you. In January we went to the Stock Show and Milo got to pet a pig and ride on a horse, he was in heaven. Milo's broviac also came out in January. April was a big month for us. On April 1st Milo had been home for one whole year, 12 consecutive months, what an accomplishment. We traveled to Alamosa for Easter and woke up to a couple of inches of snow Easter morning. Milo hunted a few eggs but lost interest pretty fast. April was also the 2nd anniversary of Milo's adoption, what a great day. In May the ventilator finally left our house for good, we had a party! We were also able to get together will all our trach friends for a wonderful picnic in the park. In June we had great fun playing outside, so much that we had to put a fence around the front yard to keep the little one contained. Milo discovered worms, playing in mud & playing with the hose. July started with a trip to Alamosa for Independence Day. We went to the parade and watched fireworks with family. We also took Milo to the mountains for the first time. He did alright but definitely needed oxygen if he got upset. July ended with one great memory, Milo's trach was removed. It was a long 3 days in the hospital with a wild child but well worth it to come out with a naked neck. In fact Milo hasn't used oxygen since his trach came out either. In August we attended the NICU reunion in Colorado Springs where we got to reconnect with nurses, doctors and fellow families. It was a great time spent with friends Marissa & Kevin and their families. The next weekend we went to the Cheyenne Mountain Zoo in Colorado Springs where we met up with Marissa & Faith for some good animal fun. To round out the month we celebrated the departure of Milo's trach with a party for friends and family. In September we went to Alamosa again to visit my grandparents before they left for their winter home in warm southern Texas. October was pretty exciting! We went on vacation to southern Illinois to visit friends. We had a great time, Milo got to see more pumpkins than he could dream of, got to ride a pony and hang out with the big horses and see brand new baby kittens. He got to play with kids his age all week then we tried to go home on the airplane unsuccessfully so a few days later we drove back to Colorado. In November my baby turned 3! It hardly seems like he should be that old. Those long days in the NICU, PICU and on the 8th floor are long behind us now. We had Milo's Birthday party in Alamosa with just a little bit of family. H1N1 was still a major concern so we played it safe with a little party which was alright because Milo wasn't feeling all that great anyway. Christmas was fun this year. About a week before Christmas Milo figured out that Santa brings you what you ask for. Santa had to scramble and do a bit of last minute shopping! Milo doesn't like to tear wrapping paper (although he will tear up other kinds of paper) so opening presents was a little slow but he had fun and ended up with more toys than he knew what to do with at the time. He's definitely figured it out now!
Now for the medical stuff :0) The most exciting medical advancement is that he is breathing without the assistance of machines or little silicone tubes in his neck and doing a pretty good job of it as well. Milo's stoma (hole where his trach was) closed up within a week which is pretty remarkable and now he is "water tight" he can take a bath in more than a couple inches of water and maybe we will go swimming this summer too. Just before Christmas Milo came down with his first cold. He did pretty well, his oxygen levels remained acceptable and he didn't work to breathe but it did wear him out after a couple of days. He ended up with steroids for 5 days and that did the trick, by Christmas Day Milo was back to normal. Last January Milo's broviac also came out a bit unscheduled but that was alright. So now we are down to just a g-tube, only one extra hole in his body. Well over the first half of this year Milo's stomach was still not feeling well. He had all kinds of tests, tried many medications but no one could figure it out. I finally suggested one last medication and it worked wonders. Milo's retching and misery has been all but gone since August. Hallelujah! Of course all "cures" have their side effects and it seems this medication is causing a strange itchy outbreak on his arms and legs. Poor guy he can retch and be miserable or he can be bumpy and itchy, I picked the latter. His eczema flares up several times a month but at this point it is just an annoyance he has learned to live with. I took Milo to National Jewish for a food challenge to corn and he passed. That has opened up a whole new world of food that Milo can eat, you wouldn't believe how much stuff has corn syrup or corn starch in it. Last spring Milo had a heart cath to check up on his pulmonary arteries and the site of his aortic co-arctation repair. Turns out the site of the repair looks wonderful, they never would have known he had it fixed. His pulmonary arteries are another story. They have grown which is a wonderful thing but both of them have areas of constriction which is not so good. We took a wait and see approach at that time so this next spring he will have another Heart Cath to see how things look and how it is affecting his heart. In July we went to see a genetics doctors and she ran more tests to figure out the mystery that is Milo but nothing turned up in those. She has a few more tests to do so we will see what if anything comes from those.
Developmentally 2009 has been a great year for Milo. This summer Milo graduated from Physical Therapy! He is doing great with both his gross & fine motor skills. He can walk, climb stairs, run and even jumps some. He is sitting "correctly" more often than before. He has great eye-hand coordination and a great eye for detail. I think his biggest accomplishment is in communication. His vocabulary of sign language has exploded this year. He picks them up so fast now. He is very cute when trying to tell a story about what he heard or saw. It is kind of like charades but the details he remembers is wonderful. His oral language is definitely lacking. He says mama, hi, bye & no. He makes lots of other noises so I know the rest is coming in his own time.
As I say good-bye to 2009 I can only wonder what 2010 has in store for us...but that's for another post! Happy New Year everyone, I hope 2010 finds you happy & healthy!