Tuesday, July 29, 2008

Rambling on about this and that....

Hello, geez, a week has gone by and I haven't blogged : ) and no one said anything. :)

Lots are happening here at our Bungalow. We started going to a dance on Friday nights with the kids in the beach parking lot. This really nice guy sets up his DJ stuff and plays all kinds of kid related music! The adults make a circle and the kids just dance away til the sun goes down. What a way to spend a nice night on the beach. Anne has taking a-liking to Miley Cyrus and Neil Diamond's "Sweet Caroline", JD is into just watching his buddies dance to "you got to move it"...good times.

JD dancing with Daddy

In other news, we caught our first crab on the boat. Well, yes,we got a crab trap (ew, for all that know me well) and we set the trap down into the water with only the best bait in town (ritz crackers, JD told us they would work) and after 3 quick tries in the water and one really long one (If I remember correctly, like an hour and 1/2) we caught our first crab...ew ew ew, but Anne and JD loved it. Again, I disgress into how fun it is to be a kid.

On other notes, we did some rounds of Doctors appointments yesterday that left me feeling a bit sad and happy at the same point. JD's ortho appointment went well, his kyphosis is down to 31 degrees and his wedging of L1 vertebrae is down to 28 and looking fabulous!!! The brace works. The doctor even used the term "you can give him some breaks"!! What I never give the kid breaks...he wears it all waking hours, ok, if you want to be technical not on the boat, too hard with the lifejacket and all....but a REAL break...YIPPPPIEEE! I love this part of our day. I was hoping for the brace to come off all together, but I should be thankful that the brace can be "breaked" here and there. The kids were so good for such a long 6 hours at the hospital, thank god Nanny came and had a limbo cane!!

So, off to other news. The neurosurgeon......notice the dots...I hated it here. JD's head is bigger than it should be all of a sudden he is off 1cm, now to AH parents, that doesn't seem alot but to us LP parents, 1 cm??? I thought immediately, measure again Dr. H. He did and got the same measurement....ugh again. He asked a bunch of questions...does he vomit? no. Headaches? no. Fatigue? no. Digression of movement? certainly not the kid doesn't stop playing sports!!! (thank god) Speech issues? again, he is half me, the kid doesn't keep quiet....so all in all, the doctor went back and forth, hmmmm CT scan, another MRI....SHUNT? what did he just say Shunt? Not my boy. Could this just be a random spot in his life? Should we wait a few months to see? Geez, I am rambling now aren't I? Are you still reading this? yikes. So, he decides along with me (my Mom was with me entertaining the kids) to wait 6 months and we will perform his 2nd MRI to see what is happening with his fluid and his foramen magnum. Scary stuff if you ask me. I really don't like all this talk of a shunt, it scares me to death and quite honestly, when I think of it, it makes me sad :) No pity though, I just want JD to be happy and if putting a shunt in his brain does that well, I will try to be strong and do it. Ugh. Doug and I have decided to get some more opinions from maybe Baltimore at Johns Hopkins. I am calling them tomorrow when I can say Shunt without being sad. JD is JD, happy as a clam for now, he is really smart (if I don't say so myself) and I will keep my head up for him and enjoy him being this way. Dr. H said that if he stays this way and doesn't get bigger, then we might not have to shunt him. God, I hope that is the case. Is it a bad trait to think the worst? Then if they say no shunt, I will think it is even better!!! Ok, so let's hope he stays the same or smaller (does that happen?)

Oh boy, this goes down as one of my rambling posts. That is what these are for right?

I forgot to mention for an extra special treat, we took the kids (Nanny and I) to the Boston Commons for a swan ride! We read the book "Make Way for Ducklings" and the kids were on the hunt for Mr and Mrs Mallard. We found them!!! It was a really nice day at the park and just the put the mind at ease kind of place to go after crazy hospital junk...Thanks Mom for coming! The kids took some silly pictures sitting on the ducks, but they are hilarious so I posted them. See kids are fun!

We are off to a week's vacation with the kids! I cannot wait. I need the rest and time to think. All is good. Both of my kids are healthy and super happy so, what more can I ask for?I will add pictures of our trip when we return. Happy Week!

Wednesday, July 16, 2008

What is happening these days....

I am on a roll now....blog readers!!! JD and Anne had cousin Emilee stay over last night and they had a blast. They all slept in sleeping bags in JD's room. Surprisingly, they were asleep by 9:30ish!!! Funny, I didn't take a picture of the sleep over party, in fear that I would wake them up...he he.

We took a mini vacation to Connecticut a few weeks ago to my cousins' graduation party. I haven't seen my relatives in so long! It was great to see everyone and catch up! I put a picture of just a couple of my cousins and some of their kids, amazing if we really all got together to see how many there was of us. (Shout out to Aunt Diane and Aunt Mary...thanks for reading! and of course, Debi and Paul, faithful blog stalkers! Just jokes) So, I have attached some fun pics from the day. We spent the night in a hotel in Connecticut to make a mini vay kay for the kids so we could swim and hang out. It worked out super good and the kids even brought sleeping bags and camped out under a work table in the hotel room, (so much for beds!) the fun of being a kid. They loved it.

Sunday, July 13, 2008

Happy Birthday JD!

Well, it is official, my little man is 3!!! We had a lot of fun for his party. Nine of his buddies came to the party. I made a bean bag toss, had little boat races and played in the yard. JD got so much stuff, remote control everything! We set up the bubble machine and the kids always have a blast running through the bubbles.

I hope this year brings JD, health and happiness. We are off his nebulizers and we have appointments at the end of July to find out if he can come off Singulair too. We are doing the usual full day of appointments in Boston. I thought since I have the day off, I might take the kids to the Boston Commons for the famous Swan boats, and the Make Way for Ducklings statues. It should be fun, hopefully we will be brace free!!! I will probably cry all day if they say to take it off forever! The poor kid wears it 10 hours a day even in the heat and NEVER complains. Cross your fingers for us!

Here are some more pictures from Auntie Debi...who by the way gave JD the coolest Spiderman fishing pole, he was on the boat last night fishing for over an hour!!!! Thanks Auntie Debi! I love the one real close up with him sticking out his tongue...he he, he was really exhausted at this point.

Tuesday, July 8, 2008

Welcome to Holland, we have arrived!!!

I know some of you LP Friends have read this, but for some reason I came across this today and thought of how lucky we truly are to have become parents of our kids. They really all seem to have been given the "happy" gene and brought us all together. So, with JD's birthday this weekend, I am so glad to have landed in Holland rather than my "original" plans. I hope that you all feel the same!!!

Emily 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.

Saturday, July 5, 2008

7 More days...

JD's 3rd birthday is Saturday....he can hardly contain himself. He is having a race car party with 10 of his closest friends. We are in party planning mode and he was so excited to send out his "invitations" to all the kids in the preschool. I will certainly take lots of pictures and post.

I have a question for all you "pro" bloggers, How do you get the cool backgrounds and personalized stuff on your blog? Do tell, I want to change things up a bit :)

Wednesday, July 2, 2008

Calling Florence Nightingale or Calgon....

Well, we should have known that a week that ends in a holiday would bring someone or some people being sick : (. We started the week with JD and his high temps, ending up with an ear infection (and oh great, his tube fell out...another obstacle and DR appt in Boston...). Well, we survived a lovely 2 days of "getting better", then poor Doug got his hernia aggravated...we spent last night 6 hours in the ER and it was from 10pm-4am ish. Oh man, I am so tired. Doug is scheduled for surgery and will hopefully be in no pain after the surgery. Right now he is really uncomfortable without taking some ibuprofen (SP?) So, I was able to take a nap for 3 hours and get up and work in my preschool downstairs with 9 children. Oh the fun we had!!!!

Well, Doug is a trooper and we hope we can safely get through his surgery and enjoy the rest of our summer.

NO MORE ILLNESS!!!!!!!!!!!