Kylee's 2nd Birthday

Here is a video of Kylee from birth to her 2nd birthday. It is hard to imagine that it has been 2 years already. As I was putting this together I realized that I have missed almost a whole year of Kylee's life. We have pictures when she was first born and then nothing until she is almost one. Just goes to show how busy that first year was. It seems like just yesterday we took this little 4lb 11 oz little girl home in a horrible snow storm just so I could get home to my boys (Collin and my husband) and have my family all together again. I can remember having people come stand outside our window while I held her up in front of it so people could get a peek at her because we didn't want to expose her to any germs. Now she is out and about enjoying the world. She has changed so much in these 2 years. It was a roller coaster ride but it was all worth it. I have the most wonderful little girl who has taught me so much. HAPPY BIRTHDAY KYLEE!!!!
I hope you enjoy...

Photo and video editing at www.OneTrueMedia.com

GI Appointment

GI

We had Kylee's GI appointment with her new Dr today. His name is Dr Noe (he is a Children's Hospital Dr but he comes to Green Bay....a 45 minute drive is so much better then a 2 hour drive). I really liked him a lot. He explained things so well. He said he thinks that her stomach is not emptying because her brain is not telling it to. He said between the 1P36 and the infantile spasms her brain is just not working properly. If the brain can't tell the stomach to empty it won't. So as the day goes on the milk just builds up. That is why when he check her stomach in the morning it is empty but as the day goes on she will have 3 and 4 oz of milk in there and it would be 3 hours after she ate. He gave me lots of options. He said he would give me all the options and then we could discuss what would work well for us and what we would like to try. So our first option was to give her a antibiotic (arythamyacin..I probably spelt it wrong). He said they give it a little different then what they do when you are sick. He said it helps to empty the stomach. Our second option was to do a night feed. She will get a slow drip of milk for 10 hours from 9:00 at night to 7:00 in the morning. Then she will not get another feed until 11:00 am/then 2:00 pm and then 5:00 pm. We can also continue to offer whatever she wants orally which is never enough to not give her a supplemental feeding. Our 3rd option is a GJ tube which has some side affects that I am not to excited about and then our 4th option is to do IV feeds with the central line she has place in her chest for blood draws however those also have lots of negative side affects and is hard on the liver which one of the medicines she is already taking is also hard on the liver.....so.....we decided to try the night feeds for right now. He said to give it a good month and see how it goes. If that doesn't work then I want to try the medication. The 2 other options are at the bottom of my list....not anything I want. On a good note he was very excited with her height and weight gain. She was 20lbs 11 oz. We are going to start the over night feeds tomorrow night. I figure I probably won't sleep good the first few nights until I know that she won't throw up with them and I need the nurse to help me figure out how to set the rate and dose on the machine that will give her the feedings. My math skills aren't up to par lately :)

Kylee's Birthday Party

We are having Kylee's 2nd Birthday party on Sunday. I can't believe it has been 2 years already. That time went so fast. Grandma Janice and Grandpa Eddie bought her a really cute dress to wear and some new little ponytails to go with it. I will be sure to take lots of pictures so I can post them. I also have pictures of Kylee in her new stander that I want to post some time soon. Live has been busy...can't imagine why...I only have 3 kids under the age of 4.