Making Christmas Cookies

Milo helped make Christmas cookies for Santa today.

He wasn't too sure about the feel of the cookie cutter on his hand at first. He kept pulling his hand back but finally got the hang of it...

Sprinkles are lots of fun!!

Waiting is so hard to do...


Finally the finished product!

He didn't try to eat the cookie, probably a good thing because he's allergic to wheat and eggs. If I thought he'd really try to eat it I would have made him some that are allergy free :0) Did you see the pink thing on his trach? That's a cap that totally closes off his trach and makes him breathe the traditional way (though his mouth & nose). We had an incident earlier this week where I gave him a glass of milk (sippy cups are no good anymore) with just a very tiny bit of milk in it, he tried to drink it and the milk poured off his chin straight into his unprotected trach. Needless to say much suctioning occured and I learned to cover the thing with something so I tried the cap and he didn't mind one bit. YEAH that mean we're getting closer....

We're leaving Tuesday morning to go to Grandma & Grandpa's house for Christmas. Yesterday Milo started rolling his suitcase up and down the hall. I think he is ready to go, what do you think?

Hope everyone has a Terrific Christmas!!!

Two Years Ago Today

Here is a video I recently came across on my computer of Milo when he was only a few weeks old. He was finally awake some during the day after his big surgery but he was still getting sedation medication, the weaning process is very slow after being on them for so long.

Watching this video now I realize just how small and frail he was. At the time I thought he looked good and really he did for what he went through. I never could have imagined how the next 2 years would play out or that he would be playing in the snow just like any typical 2 year old. Enjoy this video of him in the snow last week.

I know it's been way too long since I posted last, so much has happened. It's hard to keep up with Milo these days, he's a typical toddler with the terrible 2's who just happens to have an alternate method of breathing :0) I promise that I will get pictures of his birthday parties up soon!

HAPPY HALLOWEEN!!!

Ok, I want to know who leaked to Milo that today was a holiday? Every holiday Milo gets sick and up until today has been in the hospital. Today did not involve the hospital but the little guy was MISERABLE all day long. My appologies to everyone at Children's Hospital, we planned on coming to visit and show off one cute duckie but it just didn't work out. His stomach was bothering him, probably because I just posted that he was all better. He did perk up long enough to put his costume on and take a few pictures but then we fed him and he didn't feel too hot again. More about the belly stuff later, for now here are our Halloween pictures from carving our Jack-O-Lantern yesterday to costume pictures tonight!

Pumpkin "before" picture

You want me to put my hand where?

Finished Jack-O-Lantern

Our friend brought Milo a Halloween Mr. Potato head because he loves his Mr. Potato Head so much!

What a Cute Duckie...

Indulging Mom for just one more picture

The Sweet Sound of Laughs and Cries

About 10 days ago Milo went to the hospital for some planned procedures under anesthisia. His ENT doctor took a look down his airway to see how things are progressing. The procedure is called a rigid bronchoscopy, he has had it done many times before but this time we got the most wonderful news. His trachea looks the best it ever has, now that's still a long way from 'normal' but it's a huge step in the right direction. There was no swelling, his malacia (floppiness) is better but not gone and the scar tissue from his big surgery is stable and looks like it will not hinder growth of the trachea. In fact his airway looked so good that they decided to downsize his trach, that's the next step toward getting the thing out for good. He is now in the smallest size available for a kiddo his size, amazing progress!! For those keeping trach he was downsized from a 3.5 Peds Bivona to a 3.0 Peds Bivona. Having a smaller trach tube means that more air goes around it rather than through it. Right away I hear a difference in his breathing, you can hear him breathe through is mouth and nose now :0) More air around the trach means more air available for making noise and boy is he getting used to it. For the first time since March 2007 I have heard my baby laugh, it is such a sweet sound and I never get tired of hearing it. Mostly he just giggles and shrieks, belly laughs are still mostly silent but I'll take those giggles any day. Along with the ability to laugh comes the ability to cry and again for the first time in 18 months I can hear him cry and to be honest it's just as sweet of a sound as a laugh. What I hear is usually whimpers and small cries when he is upset or a little frustrated, the big "I'm hurt" or "I'm really mad" cry is still silent but I'm sure one day those will come through loud and clear too. He also has a new accessory for his trach that will allow him to make more vocalizations. It is called a Passy-Muir Valve, it allows him to breath in through his trach but forces him to breathe out though his mouth and nose. He still isn't fond of the valve but he did wear it for 15 minutes in Speech Therapy last week. It takes some getting used to because it alters the way he breathes, some kids panic at first and I can't say I blame them, but Milo took it in stride. He didn't like it but didn't completely loose it either.

The other procedure he had done while under anesthesia was an upper GI or EGD to look inside his stomach to see if they could identify anything that would make him wretch so bad after getting fed though his G-tube. Again, good news here, everything looked essentially normal. The doctor felt there was a spot near his g-tube that looked different but not anything of concern. So my no-so-expert opinion is that his old g-tube (Bard Button) had rubbed a spot in his stomach raw causing pain every time he ate which led to the retching. The bard button had a harder plastic mushroom looking part that went inside his stomach and ever since the day it was changed last May he has been miserable, maybe something strange happened when it was inserted, who knows, but it's water under the bridge now. About 4 weeks ago his bard button was removed and a new mini button was put in. This one has a small balloon that gets filled with water inside his stomach so I can image it might be more gentle on the inside of his tummy. It took a couple weeks after the change but now Milo can eat larger quantities of food much faster and has NO retching at all, that has been a huge relief for all of us.

I'll sign off with a list of Milo's new accomplishments:

• is getting good at problem solving, will move a chair or stool to get what he wants
• has learned more sign language, Monkey and Hat are his favorites right now
• babbles like a 6 month old :0)
• can jump in the air and occasionally catches some air
• climbs even higher, found him on the table on top of the computer keyboard the other day
• blows kisses
• can walk down steps holding on to something
• shrieks with delight in a store when he sees something he wants
• pulls things off the shelves in the stores
• shared his toys with his cousins

Milo Found His Voice

Milo discovered his voice this past week! He learned that if he puts his finger in his trach it is easier for him to make noise. It really is cute :0) We went to the zoo on Saturday and while we were walking out he decided to give his new skill a try. I made it to the car and had to stop to take a video. The zoo was crazy busy (it was a free admission day) and people were waiting for our parking spot but I could have cared less. This is a big Milostone! Once in the car and on our way home his finger found it's way into his trach. I think that at least half of the ride home he was jabbering away, at one point he started to cough with his finger stuck in his trach. At first I was proud of him for being able to cough so well but eventually I had to reach back and pull his finger out so he wouldn't choke. Silly kiddo... Turn up the volume on your computer and enjoy Milo's voice!!!

Milo's communication has progressed so well this week. Not only is he making more noises (and louder noise) he is showing off a few new signs. We have been trying for a long time to get him to use sign language to communicate and he has been, well to be honest, stubborn. I know not a shocker to anyone who knows Milo. He has been signing "all done" for a while now but this week he repeatedly used 3 new signs, "bubbles", "monkey", and "book". We have a bottle of bubbles sitting on the counter and he has to request them by sign to be able to play with them. I'm stubborn on that one :0) he gets to chase the bubbles when he does the sign. He signed monkey while we were at the zoo watching some little monkeys climbing the trees, chasing birds and investigating the water. I was so proud of him and he has consistantly used it ever since. This morning he signed "book" for me. I knew he could do it, he just had to do on his own terms, go figure that :0) I found a great series of sign language videos called Signing Time that Milo loves, we check them out from the library so gets new ones every so often. There are a couple of them that I would buy because he loves them, he is captivated by all the kids and the songs and he is obviously learning from them too. Maybe we will put those on his Santa list.

Out with the Old, In with the NEW...

This is what Milo's room looked like Wednesday morning, ventilator next to his crib...

And this is what looked like Wednesday night...

Now the ventilator lives in the next room with all the other medical supplies

If you haven't guessed by now, Milo is officially OFF THE VENTILATOR ALL THE TIME!!!

Last weekend Milo didn't sleep much at all, he just kept disconnecting himself from the ventilator or would wake up when you hooked him up. There were a few long nights of no sleep and no naps for 3 days, he was a tired grumpy little guy. He had his pulmonology appointment on Tuesday so I mentioned his newest trick figuring they would laugh and say sorry but I did not expect them to say that he could be off the vent at night. What a nice suprise. Instead of the vent at night he now has a trach collar with humidification to keep his lungs from drying out. It is so much smaller but a bit noiser than the vent. It has taken a few nights to adjust it properly and to get Milo used to wearing it. Last night Milo slept soundly for 10 hours and woke up a pretty happy little guy. At first it's a little scary not having the vent at night because I knew it would alarm if anything strange happened and the new contraption doesn't. He still wears his oxygen monitor at night so that is reassuring ;0)

Here's a new list of Milo's recent accomplishments:

• runs, runs, runs
• turns in circles when he is happy
• CLIMBS on everything
• is trying hard to jump
• had his g-tube changed from a Bard Button to a new mini button
• gained weight -- about 2 pounds in 4 weeks!!
• grew about half an inch too
• now gets real food blended up through his g-tube
• makes lots of noise but no words yet
• has mastered two words in sign language--all done & go
• put a 9 piece puzzle together with minimal assistance
• follows simple directions (when he feels like it)
• went to the zoo for the first time, Grandma & Dylan came with us
• went to the Children's Museum with Dylan & trach friends
• learned that hammers are heavy when lifted above the head & air compressors make scary loud noises when you push the wrong button

Welcome To Holland

While sitting in the pediatrician's office for what seemed like an eternity the other day I saw this story on the wall and thought it explained the experience of having a child with special needs better than anything I have ever seen or heard. Check out my previous post to find out why we were stuck in that room for so long.



WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



A note about the author:

Emily Kingsley has been a writer on Sesame Street for 28 years. She has a son who, in 1974, was born with Down Syndrome. Her work as an activist and writer has helped to change the perception of children with special needs. Emily was instrumental in including children of all abilities on Sesame Street including the little girl, Tarah, who was in a wheelchair and her son, Jason.