Happy Birthday to Kindahl and tomorrow to Khloe!!!

We have had a great and tiring day (sounds like the title of a book!). It began with Kindahl's birthday celebration this morning at 6:30am (when you have kids that work in the evenings it is the only family time!) and for those of you that know of our birthday breakfast tradition, she chose Cinnamon Toast Crunch! Oh, and birthday pictures are even more fun when everyone is still in pajamas with messy hair!! :-) So we were all in great spirits as we left to go our to our destinations and it was a great day from then on! The tiring part was the full day of Khloe's dr visits...and I mean FULL DAY! We had an exam with her heart failure specialist at 10:30, and medicine given at 11, followed by blood pressure checks at 11:30, 12:00, 12:30 and 12:50pm, with walking or resting requirements in-between and another dose of medicine. Then we saw her scleroderma specialist at 1:00pm followed by a return to the blood pressure checks at 2:00pm, 2:30 and 3:00 at which time we saw the heart failure specialist again for a final visit. Maybe exhausting would be the better word! Khloe did wonderfully well though she promptly fell asleep the minute we were in the car for the ride home!

Her visits resulted in the following information/changes/goals: as far as her scleroderma it has not changed much throughout her body but we have noticed a decrease in her mobility and range of motion. This is probably due to her not being able to do her stretching or any exercising and therefore will stay this way until she can move more and then it will be a wait and see what response we get. Her finger tip ulcers remain under control with no new lesions and her reflux is also under control, supported by the GJ tube. With her heart, Khloe was able to walk up to four and a half minutes before needing to rest and catch her breath and is still needing to sleep two to four hours during the day as well as about ten hours at night. While we did not reach the goal of ten minutes of walking the dr feels it is still obtainable and that as we work on the right dose of medicines she would also like to see Khloe having more energy and feeling less worn out. It was obvious that Khloe is also retaining fluids so a new medicine was prescribed to help with that. The dr is upping the dose of one medicine to work at keeping her blood pressure consistently lower, and let us know that the dosage may need to increse again. They are concerned about the "angina" problem, especially lasting as long as it did so we are now to put her on her oxygen right away and come straight into the heart clinic if a prolonged episode occurs, and Khloe is currently wearing a Holter Monitor for 24 hours of continuous ekg readings for them to review. We return in a month for another echo and visit with the heart failure doc, with a plan for future visits to do stress and exercise testing on her heart when she is stronger. No labs or blood draws were needed today since it was all done last week in the ER and Khloe was really happy about that!

Khloe was also happy to have her Make-A-Wish friend Mandi deliver the scrapbook to us today that was made of our trip to Florida; she met us at the end of our drs visits and it was a great way to end our day at the hospital...Thanks Mandi! And to make the day even better, Khloe's friend Emma and her mom Lori drove up to meet us at the hospital and spent a good part of the day with us. Emma also has Scleroderma with alot of the same issues Khloe has, but because this disease can be very different in each individual, she has had some challenges that Khloe has not, just as Khloe deals with some that Emma doesn't. It has been a great comfort for Khloe to know someone her age who also lives with this illness and today it was wonderful for them to talk, and compare, and commiserate, and laugh, and share with a friend who can really understand. It was very nice to spend the time together with them and both Khloe and I were uplifted by their support of us...Thank you Lori and Emma for taking the time to come!

Back at home tonight we had Kindahl's birthday dinner of both hard and soft Tacos (of course when it is your birthday you can have whatever combination of food you want!) followed by chocolate cupcakes with chocolate frosting courtesy of Karissa, with the sprinkles on the cupcakes provided by Kimberlie. We heard from Kindahl about the great day she had and then later she went to cheer practice and three of the older kids went to work. Khloe called it a night at 7:45pm and Kimber followed at 8:00, though she had to get up and "show me something" before settling down by 8:20. Now at 10:44pm everyone is back home and most of them are in bed for the night.

Thus ends our "great and tiring day", with plans to do it all again tomorrow, at least the great part and probably the tiring part too, as we celebrate Khloe's birthday. So think of us in our pjs and messy hair at 6:30am, and for those of you who can still be in bed at that time, while I may envy you the warmth and comfort, I wouldn't trade places with you for anything! :-)

(BTW...for Khloe we will be having Cookie Crisp!)