Monday, December 27, 2010

Blizzard 2010



After 12 hours of snow.....

Believe it or not that is our fire hydrant covered with at least 20 inches of snow.

The wall of snow due to snow drifts after we opened the garage door this morning.

Sunday, December 26, 2010

Friday, December 24, 2010

Thursday, December 23, 2010

With Only Two Days Left Till Christmas...

this is always a great take on the Twelve Days of Christmas song (even if you hate the song). Enjoy!!

Wednesday, December 22, 2010

Reindeer Names

Apparently we need a little work on getting all the reindeer names right. Hey, we still have THREE MORE DAYS to get it right.

Tuesday, December 21, 2010

Rudolph the Red Nose Reindeer Daniel Style

Only Four Days Left Till Christmas!!

Monday, December 20, 2010

Getting Ready to Fly

With only 5 more days till Christmas!!!

Sunday, December 19, 2010

Here We Go Again....

Hopefully with not the same outcome.

Our visit to CHOP on Thursday went very well with the exception of our GPS getting us totally lost and late for our appointment. Thankfully I had the phone number for the office handy and called prior to our arrival and they were able to push us back a few minutes. The stupid GPS also got us turned around on the way home. To say the least the car ride was quite stressful.

After waiting almost an hour in the exam room for the Dr., the news was what we kinda expected - that ultimately Daniel will need surgery/a stitch to close up the opening (a.k.a. his fistula) where his g-tube once was. To be honest the news was what we expected but really did not want to hear it. The good news is that it is pretty common for children who have/had a g-tube for an extended period of time to need a stitch and the Dr. we saw stated that, other than having to repair Daniel TE Fistula twice, all the extended issues Daniel has faced are pretty common with kids who have/are diagnosis with TE Fistulas, which was comforting to hear. He did also state that he thought Daniel sounded awesome for a kid who only has one vocal cord and that all and all he looks great - also nice to hear.

Ultimately the surgery will take an hour -start to finish - and it is termed as a "day surgery" so we will be back home that night. And from what it sounds like, the scar Daniel now has on his tummy, will look a lot like his trach scar, which is almost completely gone now. We did go ahead a schedule this procedure at CHOP for the 24th of January. I am going to call Ciny to see if we might be able to schedule this same procedure out there during Daniel's yearly check-up in April but I am not sure if their ped. surgeon would need to see him prior to that. Our long term goal has always been to get all of Daniel's yearly procedures transferred to CHOP since it is eight hours closer, but we haven't asked the folks in Ciny if this will be possible. Maybe this the opening we needed and the man upstairs has opened the door for us and is once again holding Daniel in his hands.

So the saga continues......

Santa Takes A Swim

Even with 6 Days to go till Christmas!!

Saturday, December 18, 2010

Gingerbread No More

Trying to keep with holiday traditions, our Saturday before Christmas featured baking activities to which a gingerbread house was to be made. Well to say that it was a complete and total bust would be an understatement.

A couple of weeks back I bought one of those pre-made gingerbread houses that all you have to do is mix the icing and slap the sides together. Well Daniel and I tried to "slap" the sides together yesterday and is was not good. The house landed on the floor in pieces and the rest landed in the trash and left a little one in tears.

So after our adventure to Lowe's to make the final section of our wooden train, I went back to the store to pick-up another kit. Though they did have another kit I came to the realization that houses are not my thing and are way beyond my skill level, as well as, patience level. Having this moment in the store I saw this and it was on sale.....

And knew I could handle this with Daniel. All went well until the green icing took a life of its own and flew out of the pastry bag they provided in the kit. And then I had the issue of Daniel wanting to eat the tree whole.....

I was able to get at least "the picture" before the activity was no more fun for the little man...

"The Happy Little Gingerbread Maker"
In the end, here is what our tree looks like.....
Not a total bust but I certainly am not "The Next Great Baker" in anyway shape or form. Until next year when I think making a gingerbread house or tree is a good idea.

The Addiction Continues....

With only 7 Days to go to Christmas!!

Friday, December 17, 2010


Is Santa really that big with only 8 Days to go till Christmas?

Thursday, December 16, 2010


Well as excited as we all were that Daniel's G-Tube site appeared to have closed on its own back in September it appears now that it hasn't and he still has a tiny bit of liquid coming out of it or as we call it here "leaking." (I do have to say that it is pretty funny to hear Daniel scream out "I'm leaking" when the site leaks.) All of Daniel's Drs. have stated that there is a small percentage of G-Tubes sites that do not close on their own and need a procedure to fix it but we were truly hopeful that he would not fall into that small percentage again. Go figure! Though the site does not leak all the time and when it does it is a really tiny amount we thought it would be best to have it looked at and find out what to do.

So back in November we or shall I say I sucked up my pride and made an appointment with the Dr. who fitted or placed Daniel's G-Tube. To be honest, I did not want to go to him as I truly dislike this individual but as I have learned, a child's need comes before anything and Daniel's health is most important. I also have to say I maintained my mouth but I did get my comments in and challenged the individual to the highest degree. Once again he gave us wrong information and stated that "there is a small percentage of children that never experience full closure and it is ok." WHAT?? Not liking this answer and knowing it was wrong I called Cincinnati Children's Hospital and spoke to a wonderful nurse who stated "what that individual told you in completely wrong and we expect full and complete closure here." And why won't one expect that, right? So after a long and helpful conversation she asked when we were scheduled to come back to see them in Ciny and I told her April. We both said "that's too long" and we really needed to get a second opinion locally. Long story short, we are off to Children's Hospital of Philadelphia (CHOP) today for a second opinion.

Though I expect they won't do anything today I do hope that we will get answers as to what needs to be done. From research it appears that Daniel will most likely need a stitch at the site, which is so freaking tiny now I have no clue how they are going to do it, I am hoping that they do not have to make another large incision/scar on Daniel's tummy to close up the stomach wall and the track site where the G-Tube was placed initially. In speaking with the nurse at CHOP she said "Oh he has a gastro fistula" and I was like "there is that word again which I so hate." We are just praying that they tell us that since Daniel's G-tube was in for almost three years that it takes a while for the site to close completely and we just wait it out, or that it is a simple stitch procedure that can done in the office or even better they can put something like new skin on the site and new skin will form. We shall see! Keep your fingers crossed for us!

Luckily Daniel's appointment is scheduled for 9:30 a.m. (stinks for us as we will be leaving here at 6:00 a.m. to get there but I guess it is better than 10 hours in a car) which leaves plenty of time to enjoy Philly, eat some cheesesteaks and know that Christmas is only 9 days away!!

Wednesday, December 15, 2010

OH NO...

Christmas is just 10 days away!!!!!!!

Tuesday, December 14, 2010

Don't Forget About

Mrs. C as she too is planning for the big day which is just 11 days away!

Monday, December 13, 2010

Hiding Behind the Holiday Card...

Don't you wish you could hide?? But Christmas is just a meer 12 days away.

Sunday, December 12, 2010

Is He

Really that white that his skin matches the color of a white poinsettia plant??

Apparently so. Quess he needs to get some color into his life as Christmas is only 13 days away!!

Saturday, December 11, 2010

Reindeers Dancing on My Head

As Christmas is only 14 days away!!!

Friday, December 10, 2010

Famous Amos

Or should I say Famous Daniel!! Yes, he has done it again and I am going to brag.

Back in the summer a PR representative from Valley Hospital (where Daniel was born) called me and told me that the Center for Child Development (where Daniel received his physical and speech therapy services for the last few years) was in the process of updating their website and wanted to interview me about Daniel. I said "yes" as I truly believe that the care he received there got us where we are today. It took her a couple of weeks to get back to me and forward the interview copy to review. I, of course being me, made some changes to the copy to provide a more complete overview and sent it back to her. She asked if Daniel had his picture taken at the center which I said "No" to. She said she would get back to me but never did so I just figured nothing would come of the interview.

For kicks and giggles I went on their website to see if they actually updated the site and I am to happy to say that Daniel's testimonial is featured on Valley Hospital's Center for Child Development's website. It even says "Meet Daniel Duker". Here is the link if you want to read the piece:

Yes, we are pretty excited here!

Oh Christmas Tree....

It's finally up with only 15 days to spare...

Thursday, December 9, 2010

Holiday Red

"Hey - Do you know there is only 16 days left to Christmas???"

Wednesday, December 8, 2010

Wordless Wednesday

And only 17 Days till Christmas!!

Tuesday, December 7, 2010

Holiday Rewind

Last year we took Daniel to a local nursery for his first "official" visit with Santa ( and we decided to take him back there over the weekend. I have to say "I Love this Santa!" and Daniel did not seem to "get" the fact he saw Santa on Thursday so thankfully we did not have to have that conversation. What I thought was so funny was the fact that I captured the same photo again with Daniel and Santa again this year....



It is amazing how much he has grown in one year and how cute he still is in this magic holiday moment. Only 18 days till Christmas!

Monday, December 6, 2010

Holiday Family Traditions

Back when I was a kid, the youngest child in my family always got to put the star on the Christmas tree each year. It probably was because I was the lightest but it is something we have chosen to keep going in our family. Granted, Daniel is the only and youngest child in our house but he totally remembered doing it last year and was very excited to do in again this past weekend, as you can see....

Admiring his work!
Hope your holiday preparations are going well and remember to enjoy the season. Only 19 more days to go!!!

Friday, December 3, 2010

Wednesday, December 1, 2010