Thursday, August 27, 2009

Step Up For Down Syndrome

It's that time of year again. The annual Down Syndrome Walk, Step Up For Down Syndrome. The walk will be held at Arrowhead Stadium on Saturday, October 24th, 2009, from 9am to 1pm.

The day is filled with family fun activities including pony rides, crafts, inflatables and clowns,d food! Come out and support Tucker's Troupe and walk for Down Syndrome. Proceeds from this event go directly to individuals here in Kansas City.

Click Tucker's Troup badge to sign up. A $20.00 donation gives you a shirt and access to the walk on the 24th of October.

Last year we had a great turnout and we hope to see everyone there again this year!

Tuesday, August 25, 2009

Swallow Study, Prayers Needed

OK, so tomorrow is the swallow study. WE NEED PRAYERS....we need good results, we need Tucker to fly through this...otherwise they are talking a Mic key button again. PLEASE I don't want to go down that road again. I pray that it was a fluke and he flies through it, I pray that IF anything needs to be done it is to thicken liquids but eat regular. I thought we would go home with a tube down his nose until he got stronger if the results were that he was aspirating....Dr Lawson says that the tube down the nose will only mess up his swallow even more that he would suggest a belly tube placement...which means another surgery, another intibation, which means more time in Boston. Eating and no i.v meds are all we need to accomplish before going home....there are no more i.v meds now, as of today...and the eating was no issue until they thought he was aspirating....which they thought was happening because of the wet xray and the "junky" sound.. ALL of us know, Tucker always sounds junky, it is normal for him. Lawson said that they rely on the parents to know what is typical and what is not and he too thought maybe it was a singled out, tired boy being off the c-pap mask for so long, that caused the wet xray and not aspiration...again we will know tomorrow. Lots of good vibes this way tonight...PLEASE

I also asked about getting us home to Mercy...finishing our recovery there. He said that is something they do a lot of and it is definitely something he would bring up to our cardiologist..I got the impression, however, that is something that would take some arranging, not something that we could decide and do the next week....I may be wrong. It will be addressed again very soon. I want to be HOME...even if that means the hospital in KC!!

Tucker was mad at me when I first showed up in the room. He looked at me as if he didn't know me....I loved on him, kissed him lots and he finally broke it loose. He still loves me..THANK GOODNESS! He is resting now after fighting it for hours. We get to give him a tub bath tonight which will be nice. I would like to add that to his nightly regime so he knows it is about time to go down for the night. Just like being back home for those 2 weeks, I fell right back into it, as if I had never left.

Tucker Leaves The CICU

I know yesterday mornings blog was labeled "Darn It!!", but we actually got to move to 8 East, the floor, last night around 6:30!! Our doctor came in and said "I have been looking through your chart and there is no reason for me to hold you here, so we are going to move you." Of course my question was "Tonight!!" And the answer was YES!!! So, we packed our things up in like 15 minutes, and believe me, we had a lot of stuff. When we left, you should have seen the Tucker supporters. All of the nurses and the parents that we have become friends with were all waving as we marched by. Since our room was the very last one, we had to pass them all. Tucker was his usually friendly self, waving to them all. Is so amazing how these kids touch our hearts. Most of them can't even talk yet, but they sure speak to our hearts. We pray that each and every one of them make to the floor soon.

So, we had our first night in the regular room. It wasn't too bad, just getting used to the new sounds and people in and out of our room at all times of the night. Tucker slept fine. He went to sleep around 9:30 or so. We finally have a TV that we can play his videos on and he seemed to really enjoy it. We were very luck and have a private room. I guess they figured we have spent hundred of thousands of dollars, we should at least get a private room. Thank goodness for insurance!!

Karen comes back today, she will be here around noon today and will hopefully only have to stay a couple of weeks. My goal while she was gone was to have Tucker in a regular room before she returned and we have met that goal so far. (Don't want to jinx anything, so that's all I have to say about that). I will be leaving tomorrow morning around 10 so I can be back home with Hunter, who starts high school today, and get back to work.

I didn't get a very good video of us leaving the ICU, but I have a little one of the nurses and assistants getting us settled into our new room, enjoy!! The other picture is of our nurse Katie. She went with us for our daily walk to the park.

Monday, August 24, 2009

Mommy Back To Boston

As I approach my "lift off" back to Boston I cannot believe how much time we have spent there. I never thought it would come to Todd and I switching off and on, trying to keep home life, work life, and hospital life in a city that takes a 3 hour plane ride to get to ... I never thought it would need to be this long.
We are so blessed to have such good friends, great family and strangers that have helped us along our way. I mean it from the bottom of my heart, we absolutely couldn't have done it without every single one of you. The generosity of gift cards, the well wishes, the comments letting us know you are with us, airfare and prayers, have been such a blessing. You have truly lightened our load in a time when it was needed. Very soon we will be able to repay you with a very happy, healthy, four chamber-heart boy and parents that are humbled by the whole experience. Soon Tucker will be running, going to school and climbing up on his kitchen set like old times...and I will be sitting back watching with tears in my eyes....amazed yet again at how much this boy has blessed our lives.
I thank you.....
( picture of Tucker 1 day old)