We have had a pretty busy 2 weeks. My Mom came to town after my last blog, and we had better weather than her last visit, but were still limited on warm enough days to get in the pool. But as you can see we still had fun and made the most of everyday. Elise took about a week to really start walking on her own. She started off holding on to walls, and then one day Jason and I took her out with her walking wings again, and you could see it click. She figured it out and has been walking everywhere since. At first it was really funny how she couldn't really control what direction she was going. She would walk out of the elevator at therapy and just start veering off to the right. Then at home one night she started to change directions and turn around. That's one of the videos below. It was pretty funny. She was really proud of herself for turning. I took her to gym today for the first time since walking and she really did well walking around on all the different surfaces. She also tried to pick up one of the 10lb weighted balls, too funny. Jason and I were able to replace our bikes thanks to our renters insurance, and we all three went for a family bike ride yesterday. That's the picture of Elise in her bike trailer. Also while my Mom was in town Jason and I were able to head up to Gainesville, while she watched Elise, and looked at different neighborhoods and areas of the town. We were happy to find several newer neighborhoods, and hope to find houses still available when it comes our time to move there. Elise has been pretty sick over the last week with an upper respiratory infection. She has been coughing and gagging causing her to vomit a lot. Which has also made her not eat well this last week. We will have a lot of work to do once she starts feeling better. The other video below is of Elise seeing herself in the video camera viewing screen. I want to wish everyone a happy Valentines day. We didn't send out cards this year. Also I want to wish my parents a happy Anniversary last Sat. I hope you guys have a great couple weeks, and I'll post again on the 1st of March.

Well this last week was a roller coaster of emotions. We started off the week with Elise walking on her own which was fabulous, but that same night our bikes were stolen from our carport while we were home! So we have been dealing with police reports and insurance claims all week for that. Then I had a wonderful birthday. But had to deal with our eldest dog Lulu becoming quite ill. And then the week ended with her passing yesterday due to liver failure. I adopted her when she was 9 years old. Greyhounds typically live to be 11 or 12, so I knew from the beginning we wouldn't have her for long. Well age 12 came and went, 13 flew by and before we knew it we had a 14 year old greyhound! She would have been 15 April 1st. She raced 171 races in her career, winning many. She really lived up the retired life once she came home with us. She was always the quiet one, in fact I don't think I ever heard her bark. She was never pushy or begged. I couldn't have asked for a better companion. I can tell her sisters miss her today, as I do very much........................................... On a happier note, my Mom comes to town tomorrow to stay for a week. I can't wait for her to see Elise walk! Elise is becoming more confident with her walking, and is pretty proud of herself when she follows me from one room to the next. I guess that's it for now. I still couldn't get the photo's from Zac and Miranda's visit to upload. I guess you'll just have to take my word for it that they were here. I'll post again in two weeks with hopefully all positive stuff. Until then, Love you all, Kristin.......Oh, and if you haven't seen the video of Elise walking it's in the post below.

Walk, Walk, Walk!!!

She did it! She finally walked without holding on to anything! I bought the walking harness over the weekend, and we have been working with her daily to build her confidence. And tonight she finally walked by herself. My birthday is this week, and it's the greatest present ever! Enjoy the video!

What a couple of weeks we have had. The pictures above are of the last days of my Mom's and Dad's visit. It was warm enough to get out on the beach. Elise really enjoyed wearing her sunglasses. The day my Mom flew back, our friends Zac and Miranda arrived and stayed for several days. I tried to upload photos that Zac took, but was unable. I'll try again next time I post. The weather was dreadfully cold while they were here, but we still had fun. We are hoping they will be able to come down again before we move, so we can really chow them around.................... We received a call from the intensive feeding program and they had an opening in their program and offered to move us from January of next year, to April/May of this year!!! We are SO excited that Elise will get to be in the program while we are still her in St. Pete. She will start April 26th, and go everyday from 8am to 4pm, Monday through Friday, for 4 weeks. They will work on feedings with her at 8:30, 10:30, 12:00, and 3:00. She will also see an occupational therapist everyday, consult with a nutritionist weekly, and see a Gastroenterologist. You can read more about the program at http://www.allkids.org/body.cfm?id=484 The waiting list for this program is very long, so the fact that we were moved up to April is phenomenal. Like I've said before, there aren't very many of these programs in the country, and the fact that we moved to a town that has one, and it's one of the most successful ones out there is just amazing. So, now our therapist and I are determined to get Elise ready for her 4 weeks. Elise is continually taking table foods well, although still not enough to count calories. And spoon feeding baby food is still a challenge. So we will continue to go in whichever direction Elise takes us to start getting calories in her...................... And, we also got good news from her Cardiologist. We had a follow up appointment Friday where she received another heart echo (or ultrasound of her heart). Her last appointment back in September showed she still had elevated pressures, so I was anxious to see how this one would look. Her vital signs at night have been great with no desats. Meaning she has been maintaining her oxygen levels at night since about July (when we started the new meds). Her cardiologist said that Friday's echo looked perfect. He said that if he was just looking at her echo, and didn't know her history, he would think she was a healthy kid!................... Her right ventricle was also back to a normal size which is absolutely fantastic! It became enlarged back when her pressures where so high. Since her heart had to work harder against the high pressures, it enlarged the right ventricle since that is the chamber that pushes blood to the lungs. It's like doing push ups. The muscles in your arms will get bigger, because they are pushing against the weight. In order for the right ventricle to be able to keep up, it had to bulk up. Well it has taken a long time of low pressures for her heart to reduce back down to a normal size. If someone continues to have high pressures, and their heart continues to enlarge, they can develop congestive heart failure. So, it is really good that her pressures are normal and her heart has been able to pump normally................ Now this doesn't mean that she is well, and doesn't have PH anymore. It simply means that the medicines are working, and her lungs are growing bigger and developing new tissue and vessels to also help reduce the pressure. I spoke to her doctors in STL and the plan for now is to keep going on the same path of medicines, and we will do another heart echo in June. Elise will be sedated for this one, since it is hard for her to hold still during these exams and they want to get a really good picture. Because, if they still see normal pressures we may not have to have another cardiac cath this summer.............. We also met with a nutritionist about Elise's tube feedings. We have been hearing a lot about Boost/pediasure drinks. But haven't been able to afford it. So we were really happy when the nutritionist told us we can switch to Carnation instant breakfast with whole milk, and it would have everything she needs. Even more than her formula! And it would cost us about half what we have been spending on formula. So if you see any coupons for Carnation instant breakfast, send 'em our way!..................... So you can see we've had a few good weeks. Jason has started 2 weeks of night shift. So we get to see him for a few hours every evening and that's it. Other than when he comes home in the am and goes to bed. I guess I've written enough. I hope you guys have a great week. I'll post again in 2 weeks. love you all, Kristin

Happy new Year

Happy New year! Our year has started of really cold! About 20 degrees below normal! Jason, Elise, and I went to Elise's Godmother's house in Orlando Christmas Eve, and then Jason worked Christmas. So, Elise and I brought dinner to him at the hospital. My parents have been in town since new year's eve. We were able to keep Elise up until midnight, so she was able to see her first ball drop. That is the picture of her on the couch and the three of us together. We are not getting to enjoy the beach like we thought we would due to the cold weather. So we have been trying to find things to do indoors. Like going to the mall to play on the coin operated toys, and going to an open-gym hour at a local tumbling place. We have been taking Elise here for the past couple of Mondays, and she loves it. There are trampolines, and tons of other soft things that she can walk, crawl, and jump on. Today we went and explored an old Fort, and tomorrow we will go to a citrus winery for some wine tasting. We did get out to the Saturday morning farmer's market when Leslie and Joel came to visit Saturday. They have live music and great food, plus we can bring our dogs too! It is supposed to remain cold all week and through the weekend. Which is a bummer, cause Jason's best friend and wife are coming down this weekend after my parents leave. We start speech/feeding therapy up again tomorrow after a long two week break. Elise has been doing well with table foods, but has decided she doesn't like spoons lately. We'll see what her therapist has to say tomorrow. Walking is still a challenge. She is getting closer each week to walking on her own, but is still a long way away. I'll post again in two weeks. Love you all, Kristin

Merry Christmas!

Merry Christmas! We had such a great trip back home. We had a great time seeing all of our family. Elise found out who Santa was and met him for the first time at Silver Dollar City. She loved wearing her new gloves. The weather was pretty cold for us Floridians, but it wouldn't feel like Christmas without cold weather, family, and a trip to SDC. Elise got two new baby dolls for Christmas, a pink rocking horse, and her first Cabbage Patch kid, a red head!! She loves giving them kisses and carrying them around in her strollers. We also had time to see my best friend Leslie and her son Jack. We played at my Mom and Dad's house and went to Jump mania. Which is an indoor play place that has blow up play areas. And I met up with my College room mate and her 3 kids. Elise absolutely loved watching the girls play dress up and meeting their new brother Levi from the Philippines. It was really hard leaving everyone, but the 74 degree weather when I got off the plane made it a little easier. We are glad to be back to our normal routine. I was glad to get Elise back to her speech therapist too. We only had two sessions with her before she left for Christmas vacation until Jan 5th. So we are on our own until then. Elise has been doing really well eating table foods, and we are still working on her eating from spoons. Her walking is still a work in progress too. She insists on walking only with her strollers or holding our fingers. Tonight she showed us that she can completely lift the stroller off the ground and stand, but refuses to stand on her own. She is too funny. Jason has to work all day Christmas, but we will be heading to Orlando to visit Elise's Godmommy, my Aunt Eva and Uncle Rick, and other family. I hope you all have a wonderful Christmas. Make sure you check out the other pictures I posted last week too. We love you all, thank you for everything you guys gave us while we where home. Kristin