The past few weeks Lilly has been acting as if she had an ear infection, so I finally took her in. She had not been running a fever, just had some balance issues and was pulling at her ears.
Took her in yesterday to see Dr. Jeremey Forster in Chippewa Falls. 'Ears look good, she looks good, let draw blood!' Well, tests came back with nothing that would make her dizzy although her Dig' levels were pretty low, 0.08 to be exact (take my word it is low). Which means that her Digoxin dose may need to be increased because she had gotten off the Furosimide 3 weeks ago. At least we found out before something happened. The Digoxin is one of her MAIN heart meds..... yeah it would not have been good!
Anyways, on a lighter note we are up on weight,(7.3kg) 16.1 pounds!!! We have crossed the great 16 pound mark Yay!
Well, that's all for now! I'll let you know when I hear about the meds changing.
We set up this blog to update about Lillyann's struggles and triumphs with Hypoplastic Left Heart Syndrome. Born March 24, 2009 ~ 1st heart surgery (Norwood) April 1, 2009 ~ 2nd heart surgery (Glenn) July 10, 2009~ G-tube placement September 22, 2009 ... 3rd heart surgey (Fontan) Sept. 11, 2012.
Tuesday, October 26, 2010
Thursday, October 14, 2010
It's October but Summer weather!
These last few weeks are too good to be true! We have been trying to enjoy the nice weather as we "Mid-Westerners" know will come to an end very shortly. I was upset that we were not able to get down to Al's Run/Walk this year as with work and everything else being so crazy! But, we had a great weekend anyway!
Saturday, Paul and I had a much needed Date Night-well, we were both working but we were together! Spend the day at our friend Glenda's putting in a patio door and window. Then we sat around by the fire and had a few drinks! It has been a while since we could go out all day and not need to worry about the kids!
Sunday is normally our "cutting wood" day to maintain our storage for the winter. However, we all went to breakfast and then headed up to Cameron for their huge Pumpkin patch. To those who have not been there, let me elaborate...Pumpkin cannon, bounce house, petting zoo and of course the corn maze and fresh caramel apples! There is a boat that is lifted up by straw bales that has tunnels running under it, this, and the petting zoo was by far both of the kids' favorite!
Monday was Lilly's first Nutritionist appointment with Tracy. The appointment was good overall and Lilly was actual up to 15.5 lbs (7.05 kg). We are adding butter to everything and Tracy is actually wanting us to feed her ice cream and peanut butter as much as possible. She gave us a list of some high calorie foods and some recipes to try. We are now adding 60-75 ccs (going up another 5 ccs bi-weekly) pediasure to her morning and bedtime meds. So far I can tell that her little cheeks are starting to pump up again! Maybe we will finally get out of size 2 diapers!
Thank you for checking up with our little family and I hope that everyone enjoys the rest of the fall season!
Saturday, Paul and I had a much needed Date Night-well, we were both working but we were together! Spend the day at our friend Glenda's putting in a patio door and window. Then we sat around by the fire and had a few drinks! It has been a while since we could go out all day and not need to worry about the kids!
Sunday is normally our "cutting wood" day to maintain our storage for the winter. However, we all went to breakfast and then headed up to Cameron for their huge Pumpkin patch. To those who have not been there, let me elaborate...Pumpkin cannon, bounce house, petting zoo and of course the corn maze and fresh caramel apples! There is a boat that is lifted up by straw bales that has tunnels running under it, this, and the petting zoo was by far both of the kids' favorite!
Monday was Lilly's first Nutritionist appointment with Tracy. The appointment was good overall and Lilly was actual up to 15.5 lbs (7.05 kg). We are adding butter to everything and Tracy is actually wanting us to feed her ice cream and peanut butter as much as possible. She gave us a list of some high calorie foods and some recipes to try. We are now adding 60-75 ccs (going up another 5 ccs bi-weekly) pediasure to her morning and bedtime meds. So far I can tell that her little cheeks are starting to pump up again! Maybe we will finally get out of size 2 diapers!
Thank you for checking up with our little family and I hope that everyone enjoys the rest of the fall season!
Sleeping with her new winter hat
Yes this is outside the petting zoo!
Nap time + a 1/2 hour tractor ride=not so happy Lilly
Under the boat in the tunnels
Saturday, October 2, 2010
Some stuff, different day!
Lilly has been doing really good! Eating more and more every day. Ramen noodles are her favorite...I must say! It is an amazing feeling knowing that we have not been admitted for almost a whole year.(knock on wood!) Her GI doc seems to think that she is underweight, well... she is, very underweight! I am sticking to my guns, "NO G-Tube!" and as much as he hates it, he can't deny me that.
Her O2 and heart rate has been good. 85% and normal heart rate. Weight...like I said she is really underweight, she was at 6.8 kilos (14.5 lbs) and for being 18 months old is in the bottom 1%. Oh well, what can they expect! We also got off her diretic (furosimide) completely. So far so good.
We are now on 1.5 calorie Pediasure and have some recipies that actually sound kinda tasty. We will give those a try starting next week, along with the Diatary journal we need to keep. We will see a Diatician every two weeks until we get back on track.
With cold and Fllu season upon us, of course Lilly and the entire family for that matter come down with it. Dyaln's lasted 48 hours but the rest of us had been stuffed up and runny nose for the last week. Lilly seems to be tolorating it fairly well.
She has not figured out how to climb! Yep, I am in for it now! Window cills, coffee table (kitchen table for that matter) and everthing else to try to fall off of!
Thinking of our heart friends and familys always! God Bless and take care this Flu season!
Her O2 and heart rate has been good. 85% and normal heart rate. Weight...like I said she is really underweight, she was at 6.8 kilos (14.5 lbs) and for being 18 months old is in the bottom 1%. Oh well, what can they expect! We also got off her diretic (furosimide) completely. So far so good.
We are now on 1.5 calorie Pediasure and have some recipies that actually sound kinda tasty. We will give those a try starting next week, along with the Diatary journal we need to keep. We will see a Diatician every two weeks until we get back on track.
With cold and Fllu season upon us, of course Lilly and the entire family for that matter come down with it. Dyaln's lasted 48 hours but the rest of us had been stuffed up and runny nose for the last week. Lilly seems to be tolorating it fairly well.
She has not figured out how to climb! Yep, I am in for it now! Window cills, coffee table (kitchen table for that matter) and everthing else to try to fall off of!
Thinking of our heart friends and familys always! God Bless and take care this Flu season!
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