Christmas 2009

Wow!  What an AWESOME Christmas we had this year!  There were SO many things to be thankful for, but I am most thankful for having everyone at home together on this special day.  No hospital stays to worry about, and nobody sick... everyone was healthy and happy!  What a blessing.

Yesterday, Christmas Eve, we had dinner at Granny and Pa's, and then had our Christmas at Mom and Dad's where we opened some pretty cool presents: Carrie Underwood tickets (woohoo!), enough musical instruments to create a band, vests & scarfs, and more.  Today, we had a fun-filled Christmas morning at our house, and then we went back to Granny and Pa's for some more family fun, presents, and Christmas cheer.  Once we got back home, we all took a nice, and well needed nap.  We woke up, got ready, and went out to dinner.  After dinner, we went to see a house in the neighborhood that had lights that "danced" to music on a specific radio station.  THAT was super cool, and the girls (and Kenny and me) really enjoyed parking for a bit and just watching how the lights changed with each beat, and faded like each note! 

I have to say that Santa brought some really good stuff to the house this year (as he always does!).  Brooke's favorite Santa gift this year was definitely her pink BB gun (see the video of her opening it here in the video link - coming soon!), with her new "cool" blue bike as a close second.  She was emphatic that she didn't like pink or princesses anymore.  Taylor's favorite gift was simple:  sparkly pens and paper - she loves drawing and writing.  But, she also loved the bean bag lap writing desk that she can now use to write and draw when she is sitting.  It gives her a large, hard surface to write on which makes it much easier than her lap or a book :)  Madi enjoyed playing a bit with everything she got... her baby, her doctors kit, her clothes, her books - but, she hasn't been able to go out in her biggest gift:  a new power wheels Barbie Jeep.  It has been cold and rainy all day :(  Nurse Louise also brought the girls some gifts to open, all of which they loved!  Brooke got a BFC gilr, Taylor got a Moxie girl and a tinker bell nail/cosmetic kit, and Madi got a LPSO dog, who she fondly calls "Foofoo".  My favorite gift was what my girls got for me:  a sterling silver necklace with a cut out heart in the middle that has each of their names stamped under the heart :)  LOVE IT!  But, seeing Carrie Underwood is a close second!

Thanks to everyone for a wonderful holiday!  What an awesome couple of days! XOXOX.

We Made It!

Well, we made it to good ole Salt Lake City. It was an EXTREMELY long day. We left the house at 2:30pm for a 4:55pm flight - security can be a bear with medical equipment! We arrived in Salt Lake at 11:57pm Virginia time.

Details: We boarded the plane in Richmond, and got to wave to Daddy, Brookie, and Madi when we were out on the Tarmac. They were able to see us from the window. We connected in Cincinnati, where Taylor TOTALLY knocked over my whole large sized diet coke - all over the food court floor in concourse B. That was really the only disaster of that connection. Oh, but I guess I forgot about the fact that there were STAIRS we had to go up to actually get into the Cincinnati airport from the puddle-hopper plane. Uhm... what would they have done if Taylor was in her 215 pound power chair??? That certainly can't be lifted up the stairs like a Graco stroller can! And I can GUARANTEE that "calling ahead" to arrange these things does NOT help at all - been there, done that... and still get questioned about all our bags we bring on the plane! Upon our arrival in Salt Lake City, the cart I put all of the medical equipment and push/pull through the airport was deemed "lost". We always check it at the door of the plane, and it is then put under the plane in a spot where they know it needs to be pulled up for use as soon as the plane arrives at the gate. Hmmm... we had it when we got onto the flight from Cincinnati to SLC, but somehow it was lost during the flight (be sure to watch out for metal carts falling from the sky!) Fortunately, Amber was able to get a gate pass and arrived just as I was about to try to carry it all AND push Taylor's stroller up the ramps, through the SLC airport (which is HUGE), and to baggage claim. When we got to baggage claim (via the electric cart which actually picked us up after a phone call by Delta, thank goodness), the cart was sitting there. The cart is not much help all the way at baggage claim when I have bags that I need to put into it. But, I guess I shouldn't complain too much since they did call the electric car to help us instead! At any rate, we were very happy to be here, but it was a LONG 9.5 hours for sure!

We got to Amber's car, and it took a little bit to figure out how to get everything to fit into the car. If Amber didn't pack like she was moving, when she was only going to be gone for 5 days, we wouldn't have had a problem... just kidding Amber -- you know it is funny! In the process of getting everything organized, I TOTALLY bent the wheel of the "lost" cart, so now it rolles all lopsided and crazy. That's okay, though - it still rolls none-the-less. Amber and I laughed a lot about the whole process, becaues the last time I was here, it was even harder to fit everything into her car, and I ended up with the big ole "lost" cart on my lap in the front seat!

Once we got to the hotel (probably about 1am), we had a minor issue. The room they gave us initially was not what I had requested, so I had to go ask to switch rooms... we needed an extra bed! Once that was situated and we moved into our final destination, Taylor hung out with Amber, whom she had been asking about for ALL 9.5 hours of travel. She really enjoyed the time with her. I caught up with Amber as well. I got all of Taylor's medical equipment unpacked, put together, plugged in and ready to go. Once I finally got all that done, it was 4am... and Taylor was still wide eyed and bushy tailed - playing with a VERY tired Amber. It was then time to go to bed, and we were all out for the night.

Brooke Loses Her 4th Tooth!

Today, Brooke was eating lunch with Grammy and Pappy when she bit into a tortilla chip and cracked her already loose tooth almost all the way out. What happened really hurt and really made her tooth loose (she has been trying for WEEKS to get us to pull it), so out it came! I can't believe my Brookie has lost FOUR teeth. The weird thing: all four teeth she has lost have been on the bottom. I'm not really complaing, as keeping those top baby teeth keep her looking younger, but I just find it odd.

At any rate - she is getting so big, and it makes me happy and sad all at the same time.

Trip to Utah is Booked!

Today I finalized everything for our trip to Utah (trip #4) - airfare for Tay and I, and a hotel room. We will be seeing Dr. Swoboda, as usual, but I have added another appointment while we are there. It is with an orthopedic surgeon that Dr. Swoboda uses with her SMA patients. A lot of SMA kids go through something called growth rod surgery - when they put a metal rod in their backs to help counter and prevent their scoliosis from crushing the lungs. This surgery takes place about every 6 months so they can go in and extend the rods as necessary to accommodate growth. Since I've noticed Taylor's spine curving as of late, I definitely want to have it checked out. There is also a new product called the titanium rib that I will talk to him about. It accomplishes the same thing, I'm just not exactly sure how :) so I will be inquiring! I'm hoping that it alleviates so many surgeries (going every 6 months), but we will see. I am PRAYING the information we receive is that her spine seems ok right now and that we don't have to already start the surgeries, as I know that the later they are performed, the better... but, we'll see.

Utah Trip Booked

Today I finalized everything for our trip to Utah (trip #4) - airfare for Tay and I, and a hotel room. We will be seeing Dr. Swoboda, as usual, but I have added another appointment while we are there. It is with an orthopedic surgeon that Dr. Swoboda uses with her SMA patients - his name is Dr. John Smith. A lot of SMA kids go through something called growth rod surgery - when they put a metal rod in their backs to help counter and prevent their scoliosis from crushing the lungs. This surgery takes place about every 6 months so they can go in and extend the rods as necessary to accommodate growth. Since I've noticed Taylor's spine curving as of late, I definitely want to have it checked out. There is also a new product called the titanium rib that I will talk to him about. It accomplishes the same thing, I'm just not exactly sure how :) so I will be inquiring! I'm hoping that it alleviates so many surgeries (going every 6 months), but we will see. I am PRAYING the information we receive is that her spine seems ok right now and that we don't have to already start the surgeries, as I know that the later they are performed, the better... but, we'll see.

Fun First Day in February!

Today was a great day. Kenny cooked breakfast (yummy!). I finished laundry... ALL the baskets are EMPTY, and all clothes are folded and put away - YAY!

The girls got the opportunity to go outside today, as it was really pretty out there. Taylor went out in her power Standing Dani, and the other girls ran around and played with the neighborhood kids. It was a WONDERFUL preview to the season coming upon us... spring! I can't wait! All of the kids love to play in the cul-de-sac with each other and they are so good to one another. Not to mention it means that *most* of the "germ-bugs" are gone, and we can relax a bit more and not be stressed that Tay is going to "catch something". 3 hospital visits (2 of which were stays) in one month was enough!!! The super bowl comes on tonight... I don't really care who wins, but my hubby says "Go Steelers". Have a great day!