Shaken not stirred...

I'll be real honest...when Paul and I registered for a blender when we got married my biggest concern was its ability to crush ice in assisting Paul to make his fabulous rita's. Never did I imagine it would quickly become my most used appliance. A couple of weeks ago we switched Sam completely over to a blenderized diet. It took us awhile to find a formula Sam would tolerate, and we did end up settling with the one that was "real food". I'm just not quite sure how real it is since it is able to be stored at room temperature and can be hung over night. Anyways, I have always known my goal was to move to a blenderized diet or basically just putting normal food into a blender.

We switched a couple of weeks ago and he is thriving with the new diet. Our dietitian worked a recipe for us and we stuck to that pretty religiously, but at our follow up last week were given the green light to make adjustments as we see fit. Sam made the biggest weight jump he ever has and I hope to continue. It's no secret that food is important to us and now we can share that with Sam and it all feels a little more normal. Today's recipe included 2 huge avocados, blueberries, chicken, ham, bananas...some other stuff too but at least I can spell all the ingredients.

Mac & Cheese

Kids and eating are a funny thing...one day we eat this, one day we don't. Last week I tried several attempts at trying to get Jack to eat some mac & cheese, but something is seriously wrong with this picture. Below you see broccoli, spinach, turkey, and mac & cheese. And every night he ate the broccoli...

the spinach...

but never that sad and lonely mac & cheese....

but he did try a bite of turkey! :)

Ch-Ch-Ch-Ch-Changes

This blog thing is a little tricky for me sometimes. I can be a very private person depending on the situation, but this provided a way to keep families and friends updated on Sam and our happenings and quite frankly we need that support. At the same time, it's hard to have lots of our experiences hanging out there. What do we include in the blog, what do we not? There are plenty of things going on in our lives, both big and small that I choose not to blog about because I do have to have some sort of privacy for our family and myself.

One area of my life that has never made the blog is my work. There are some staff and families who read this and I'm sure they don't want to hear more about work and I like to think I can separate the two...sometimes. Not so much in recent months, or probably the next couple, but definitely an achievable goal. More so now that we are letting the cat out of the bag with the latest news...and yes I do realize they spelled my name wrong in the article.

When telling friends and family I think the question I got the most was, "doesn't that make you sad?" Well of course some aspects make me sad. We are no longer a small organization; I will not be able to tell you exactly where your $25 dollar donation went because at times I knew it went to buy a certain child a certain toy, Rebecca and I don't have final say on things (this is really good and bad), and I could go on. But if you know me at all, I have to keep my head in the game by focusing on the good stuff, because it really all is. I truly think this merger will provide longevity for the center, its staff, and the population we serve. It provides Rebecca and I with necessary infrastructure support that is long overdue. It provides staff with benefits and salaries we would not have been able to offer. It is a win-win for me, our kiddos, and our staff. It allows both Rebecca and I to get back to a more clinical focus which is 1) our strength and 2) the reason we started it all. These are the reasons why I am so proud to be part of the center and where it is today. I think this a new and brighter beginning than we have every been given and I am honored to be a part of it. So tonight Paul and I will toast...we will toast those moving on, those coming with, and all the good things to come.

And just in case you were worried Puzzle Pete is coming too...he will just be redesigned with his new name Easter Seals North Texas Center for Autism.

Watch out Ricky Martin!

It's been kind of a long weekend to a longer couple of weeks...more on that next week. Anyways, both our boys have had fevers at some point over the weekend and have just seemed to be in that "fighting it off" stage for a couple of days. Makes for a little extra whine, a little tighter cling, and super runny noses. As with all sick kids though it rarely gets their personalities down for long. We decided to go ahead and put our tree up last night. Can you guess the new theme?

Someone picked it out just for SuperDad and spent the rest of the Target visit chanting..."T-C-U FROGS!"

I let Jack decorate the bottom half so I am aware they are grouped and there are gaping holes, but we are not going to fix it. Plus, he has already re-decorated about 30 times.

This Ricky Martin Dancing Santa was given to us in 2000 and keeps on kicking. I think it was given as a gag, but if Paul's grandparents only knew how much use it has gotten over the past few years they would definitely be pleased.



Sam is a little worse today, but hopefully we will turn it around soon and be back to holiday cheer!

It's beginning to look a lot like Christmas...

Or maybe about a quarter of an inch of flurries...but my kids loved it!

Manic Monday

Accidental decannulation has been my biggest fear for the last 17 months. You know that it will eventually happen, but you never know when, where, or how you will react. It has kept me awake many nights. The thought that the proper positioning of a piece of plastic is the only thing keeping your child alive is something that never leaves your mind. It took us nearly a year and a half, but Sam, Carrie, and I finally know what it's like.

Sam has recently discovered that if he sticks his finger in his trach he can force enough air through his mouth to make noises. While Carrie and I don't explicitly condone this behavior, it sure is great to hear him "talk" once in a while. Jack thinks it's pretty funny as well. Sam tends to do this frequently between the time we put him to bed and he falls asleep.

Monday night Sam was making his usual noises when I noticed that they sounded a little different from his normal chorus. I peeked around the corner of his bedroom and noticed that even though Sam's hands were at his sides, he was still "talking." My first thought was that he had a plug. I assumed that he had coughed up a thick and large enough amount of mucous to clog his trach. I called to Carrie over the monitor for a little assistance with suctioning. When Carrie arrived she noticed immediately that Sam's trach did not look right. She correctly identified that Sam had deccantulated. This basically means that Sam's trach had somehow become displaced and was no longer functioning. The noises Sam had been making was him breathing on his own through his mouth. He did not turn blue or struggle, there was no panic in his eyes, but time was a factor and we needed to get his trach back into place in a hurry. Carrie calmly grabbed Sam's emergency trach and we were able to get it switched out and back in place in a matter of seconds. Sam thought the whole thing was pretty funny, and is doing just fine.

Carrie and I on the other hand are shaken to say the least. We are, however, also comforted knowing that Sam has the ability to breath on his own for at least a few minutes and that we have the ability to act quickly when it really matters.

I guess we can chalk this one up to another obstacle overcome by the greer clan. Just another experience that makes us stronger. A reminder that life is fragile and precious and unpredictable. Hopefully sleep will come a little easier now, but I doubt it.

I left my heart in Tucson

Well we are officially back and all in 4 happy pieces. Overall, traveling with Sam (with the up front leg work) was as easy as we had hoped. We couldn't have asked for more gracious hosts than the Lomonaco's who literally gave up their beautiful home to our family. We had delicious food, fabulous wine, beautiful scenery and just enough distraction with a house full of kids to stay focused on the positives. Holidays have been difficult in recent years for the Haycraft's, as they will continue to be for years to come but we found a nice balance of honoring and forging ahead.

We occasionally went out, enjoying the phenomenal Desert Museum

Note the "caging" of the animals. An incredibly impressive living museum where animals are in as natural an environment as possible.

And Sabino Canyon...

Enjoying "Dibs" was a nightly routine.

We played and we played...

Katie and Patrick are always a favorite and an absolute godsend to those of us with small children. They truly love spending time with the little ones which gives us opportunity to enjoy each other. Jack has already made one phone call to plan the next visit.

The Lomonaco's have an incredible property with winding trails of cactus gardens, indoor & outdoor art galleries, and incredible views.

Outdoor Art Gallery...

Gardens

The View of Finger Rock from their gardens

Good company...

The success of this trip has given our family the confidence to venture out on future expeditions. Christmas in Tulsa, CCA conference in Boston with a side trip to Maine, the Greer Clan is once again ready for adventure. Add this to the list of blessings we are very Thankful this year.