Sunday all four of us left for Hollywood, California to visit Universal Studios; the kids had never been. We were a bit nervous since it was raining cats and dogs the whole trip there, but on Monday morning the sky was clear and we were ready to conquer the park; of course first we had to find a Quest lab to take Kass blood sample to.
Kass had been a little more tired than usual on Sunday so we decided to get her wheel chair at the park so she wouldn't tire so quickly. It was kinda fun since we were able to get front row seating on all the rides. We had to keep thanking her for the priviledge, who needs to pay for front of the line passes! Ha! She lasted till a little bit after lunch and you could see she was just done. We all went back to the room to change her medicine bag and she crashed hard. We were suppose all go back later, but we were having a hard time waking Kass; so Ryan and Kyle went back to the park and I stayed back with Kass. That day she slept from 3pm till the next morning!
The next morning she looked better and was ready to go back. We enjoyed being at the park, that day until 1pm and went back to the hotel to check out so we could go to the taping of the Jay Leno's Tonight Show. Ryan, Kass and Kyle had never been to a live taping. Unfortunately we were not able to take any pictures at all not even with our cell phones, I guess some kind of copyright laws. But it was great to experience and we got to see Dane Cook, the comedian, Julie Scardina with the coolest animals, and listen to Hot Chelle Rae, the band, not sure who the heck they were, but they were good. When we got out I got a frantic call from the Burzynski Clinic asking how Kass was feeling. I explained to them that she had been extremely tired the day before, but today she seemed to be feeling much better. They told me that they were worried because Kass blood results showed her hemoglobin at 8.4 and 8.5 is transfusion time. She was not showing signs of too much concern by then so they instructed us to do a full panel blood test again the next morning just to check it and if it came back low we would have to come home early and setup a transfusion with her local doctor in Vegas. Ugh! Never a dull moment.....
That evening we checked in to our hotel right off the beach by the Santa Monica Pier. Wow, what a view! We tried to enjoy dinner and then sat by the fire pits overlooking the ocean till we were too tired trying to enjoy each other. The next morning, Kass was still looking better and we were hopeful. Ryan had to take Kass to a near Quest because I had not brought extra blood tubes, so when they got there of course no one would use her port/catheter they had to stick her to draw her blood. So irritating!
When they got back we had breakfast by the beach, rented cruiser bikes and rode to Venice beach to get Kassidy's henna tattoo she's been wanting forever. She got "Never Give Up" on the inside of her wrist. She's been really wanting a real tattoo, but Ryan and I are hesitant. We will have to think about it.
Our cruisers |
We then rode the Santa Monica pier ferris wheel and had lunch at the pier, but by then it was just time to go back home. It took us 7 and half hours to drive back home from LA, but we did not care. We had gotten a call from the clinic on our way home letting us know that Kass's hemoglobin had gone up to 10.5. Our prayers were answered. We all had a great time on vacation and enjoyed each other's company. In Kassidy's own words, "the best part is that my family is together again".
Thanksgiving morning, Kass was too tired to come with us to Catch the Gobbler 5k run and 1 mile walk. It's our tradition every Thanksgiving morning. We had a great time, but really missed Kass, but we understood and wanted to make sure she enjoyed Thanksgiving with us later that night. When we got back it was cooking time. We all went into mach speed, every single one of us helped out. It was great! Around 3pm Rosario and her husband Jody arrived, my friend Holly, then my cousin Ari, her baby, my cousin Jose Carlos and Ari's friend Alba arrived from Utah. We had an amazing Thanksgiving dinner together with some games after. Kass went to bed and we geared up for Black Friday. We were very lucky this year and were home by a little bit after midnight.
The gang at Catch the Gobbler |
Kyle wins 3rd overall with a 16:11 5k time |
Kass and Baby Thiago (cousin Ari' baby) |
The rest of the weekend, we watched movies, went bowling, dinner and just enjoyed each other's company. On Saturday they all helped us set up a booth at Sam's Club at Centennial Pkwy to start selling Bulldawgopoly, which has turned out amazing. It's a game similar to monopoly that features Las Vegas businesses, Bulldawg sports and clubs. Each game is $25 and 100% of sales go towards Kassidy's Army. We will be at that Sam's Club again next Saturday selling the games or you can order one by emailing kassidysarmy@live.com.
Today we dropped of Kyle at the airport so he could go back to Boise, we had an amazing time having him home. Then we said good bye to the rest of the family. Thank you all for being part of our Thanksgiving, we had a great time.
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