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