welcome to holland

i wanted to post this poem...if you have a child with a disability than you have probably already read it, but i have just recently read it for the first time and got quite teary eyed...but i liked it alot and wanted to share....


WELCOME TO HOLLAND
by
Emily Perl Kingsley.


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.

as promised...

here are the pictures as promised....and the reason for no surgery was that it was supposed to be a pretty simple procedure, and my gastroenterologist was going to do it, but once milo was under anesthesia and he was in there with the camera he discovered milo's bowel or intestines was up a bit higher then normal, which isn't a big deal, it happens, but he couldn't do the surgery without an actual surgeon and laproscopy....so, we had to postpone it until im not sure when, im supposed to be getting a call to let me know...so now we wait, and milo has to have the ng-tube a bit longer. but it figures that milo's intestines were up higher than normal, that's my milo...always different, he's a little nonconformist :) lol

surgery update....

everyone is probably wondering how milo's surgery went.....but it actually didn't happen today, i'm too tired to explain all the details but after a very long day at the hospital the surgery was postponed....i will fill in the details tomorrow and post some really cute pictures of milo wearing little hospital pj's....until then, goodnight.

i never thought.....

i never thought that my baby would come six weeks early

i never thought that he would be rushed away to the nicu before i got a chance to hold him

i never thought that it would be a whole week before i could hold him for the first time

i never knew that it would be so difficult to feed him

i never thought that he would live in the nicu for two months

i never thought that i would feel like his nicu nurses knew him better than i did

i never knew that once he got home it would still be so difficult to feed him

i never thought that my whole life with my baby would revolve around trying so hard to get him to eat enough for six whole months, while his weight fell off the charts because he just wouldn't

i never knew that i would ultimately fail at bottle feeding my baby and he would end up back on the feeding tube

i never thought that i would have to rush my baby to the emergency room at four months old because he was having seizures

i never thought that when he had the cat scan at the er they would tell me that he has something called pvl as well

i never knew that i would be so scared

i never thought that i would have to wonder if my baby will ever be able to see my face

i never knew that some doctors could be so careless.....while others could be so great

i never thought that i would have a pediatrician, a neurologist, a developmental pediatrician, a pt, an ot, a feeding therapist, an opthamologist, a gastroenterologist, a nutritionist, a vision therapist, and a developmental therapist....along with two or three appointments a week....

i never knew how proud i would be of him for trying so hard

i never thought i would have a baby who would be diagnosed with cerebral palsy

i never though that i would actually feel relief for finally knowing for sure

i never knew how hard this was all going to be

i always knew that i would love him

i never knew how much

two more days to go....

surgery is in two days now....and it can't come soon enough. milo is starting to get very annoyed with the feeding tube in his nose and i think he has figured out that if he coughs hard enough he can actually manage to cough it up, so that one end of the tube is sticking out of his nose and the other end is hanging out of his mouth...then we have to pull it out and place a new tube...he has actually started to do this about every other day for the past week and a half....i am getting very good at placing tubes! at first it took me quite a while to measure and get the tape all ready and then actually place it, now i have it all ready and into his tummy in about 5 minutes.... but i am glad to not have to do it anymore, it will be a very good feeling tomorrow night to take it out for the last time.

on a totally different topic, i just realized that milo's birthday this year (his first birthday) is on thanksgiving. its weird, i always had this idea of a big first birthday party just for him....i didn't really think he would be sharing it with a big turkey dinner...but at least it wont fall on thanksgiving again until 2014.

listen to your nicu nurses....

milo recently changed pediatricians (we had a horrible time with his previous pcp, i will explain the whole story sometime but i don't have time right now) and i just really love his new doctor and the whole clinic is wonderful, its called the tiny tots clinic and it is just for preemies who have done a stay at the nicu....everyone is really nice there and they all know what their talking about.

when we were staying at the nicu i asked the nurses if they could recommend a doctor for me and i think the first name out of any nurse i asked was dr. suterwala (our new pcp), but he was at baylor and i didn't really know how to get there so i decided to go with a doctor at medical city (where his nicu was) because we had been there for 2 months and were just kind of comfortable there.

anyway, the moral of the story is that if all your nicu nurses are telling you to go to a certain doctor, listen to them! they know what their talking about.

some random pictures....

surgery

milo is scheduled to have surgery on the 13th....to replace his ng-tube (feeding tube in his nose) with a g-tube (feeding tube in his belly). i am of course nervous since its surgery and he will be under anesthesia and all, but im also very excited to get this awful looking tube off of his cute little face, and im very glad that i never again will need to place a tube into his nose and push it down to his belly, its not fun and he really doesn't appreciate it very much. he will be staying at children's medical center for a few days following his surgery to recover. wish us luck!

wait and see.....

one of the many difficult things about having a baby with cerebral palsy is the wait and see factor.....all parents have to wait and see of course, as their babies personality develops and they discover their children's many talents as well as their areas that need some extra help....but parents of children with cp hear the dreaded phrase "we'll just have to wait and see" all too often, and some of the things that i'm waiting to see are....will my son be able to walk? will he be able to talk to me? will he be able to see? amongst other things. i hope i don't sound all sorry for myself....sometimes it just seems like the wait is so long and milo is just such a little mystery, i just wish there were more answers sometimes.

milo's eyes

milo has something called cortical vision impairment (cvi), which basiclly means that his eyes work normally but the special vision center of his brain does not...due to the damage he suffered when he was born. i put a link to an article about cvi if you want to know more about it. so as of right now he is pretty much blind. the only thing he really responds to visually is light. one of the good things about the fact that it's cvi as opposed to other types of blindness is that vision tends to improve as the child grows older and the brain develops, so milo is going to start vision therapy....and hopefully with time he will begin to see better.