Well, we are home but have been crazy, crazy busy.
First off we can never travel without something happening! We got to Rochester and we forgot our luggage. Nice-
so we went shopping, something we didn't intend to do but we had to. Thank goodness we had Kooka's medications with us!!! :) After shopping for new clothes we went swimming which was really neat because the pool was on top of the hotel over looking the whole city the girls really loved it. We swam until it was bed time- then we couldn't get the girls to actually go to sleep because we all had the giggles.
We started her tests bright and early, for some reason KarLeigh decided she wasn't going to cooperate through the x-rays, and cried the whole time like it was the worst thing she has ever done. She was a trooper through the rest of her tests. When the did her 2 hour long echo they kept coming back and checking her carotid arteries which was making us anxious.
KarLeigh's current heart conditions are: Moderate/severe right sided heart failure, wide open pulmonary atresia with leakage, aortic stenosis with leakage, mitral valve regurgitation, atrial enlargement, and hypertrophy of her ventricles. We are having some issues with her heart rate as her resting rate is in the 120-130's even at sleep and the meds don't seem to be helping. We are watching her closely as we are having more medication changes.
We have had a really rocky road this past year-last year at this time we weren't even sure what KarLeigh's future may even look like or if there was going to be one. She has over come so much this year, and endured a TON of bumps in her little road. We are looking forward to NO SURGERY THIS SUMMER!! :) We have the edema under control, and she isn't feeling short of breath, as long as she is happy we are happy. All we want is decent quality of life...not even decent THE BEST- she only deserves the best. We are still working on her eating but some is better than non at all.
With all of that said, we have been pushing the fluids as the weather has been very hot and not very nice for heart kids, and heart adults! But she sure is a fish in our pool lately so that keeps her cool!
On the way home from Rochester we witnessed some CRAZY weather we saw 3 funnel clouds coming down and going up and coming down again-the girls were intrigued I of course was scared!
We were able to see a friend who was also in Rochester-It is nice to see familiar faces when you have to be somewhere you don't want to be.
On to Miss Lyric- She ended up in the ER this week with stitches on her nose. Poor baby she was running and fell and hit her head on the side of the parked motorcycle. There was so much blood we didn't even know where it was all coming from-but she is doing better. For those of you who know our little spit fire I am sure this comes as no surprise as she is more of a tom boy than anything; always hurling herself off of swings, furniture, and ANYTHING she can stand on. We used to call her hurricane Lyric-I think we might go back to the name :)
That about sums it all up. We are really looking forward to spending our summer relaxing and haning out with the girls. Some quality time we all are in need of!! :) We hope and pray for no issues to arise anytime soon..........but if they do, we always make the best of things. We only have today-Who know what tomorrow will bring.
-The Watts'
