Cookie Monster

Cookie Monster

Last Friday was Kylee's Valentine's Day party at school. I got a phone call and when I answered it they said hi Karen this is Ms. Heather (Kylee's teacher) and my heart sank. I thought something must of happened at school and she must of heard it in my voice. She says no no this is something good. She said I just wanted to call and let you know that Kylee is eating a cookie and is really liking it. We video taped it and would like to send it to you. I could of cried. She has never eaten anything like that before. She said is was nice and warm and fresh from the oven so it was really soft. They tried to e-mail me the video but the file was to large. Then on Monday when we were in Milwaukee we were eating lunch and we were feeling bad eating in front of her and so I gave her some of my cheddar broccoli soup to try and she liked it and didn't fight me on every bite. I am so proud at how well she is doing eating.

Appointments

Well Monday was a fun filled day of appointments. We started out at radiology at noon for a new GJ tube (to Ashley's mom...we had one of you button covers on again and they loved it). Then at 1:00 we headed to her first dental appointment. Lets just say she did not like it at all and screamed thru most of it but the staff did a great job with her. She had lots of build up on her teeth but they said that is very common with kids who are tube fed. They cleaned them up really nice and then gave me a few tips on how to brush her teeth. They said some parents use a rubber door stop to stick in there mouth to keep it open so they can get in good and brush. They also said to use a regular tooth brush and toothpaste (we were using a baby tooth brush and toothpaste). Then we headed to neurology. That was a never ending appointment. Our appointment was at 2:30 and we did not get out until 5:30 (we were just seeing the Dr no tests or EEG's). They think Kylee is doing great. She is still having 3-4 seizures a day but for the type of seizures she has that is really good control. Plus her seizures only last 1-3 seconds. She wants to get 100% seizure control but she thinks we are on the right path. So they have decided to take her off 2 of her seizures meds in hope that the 2 they leave her on will work better. So we are slowly taking her off of them and just need to watch how she does. So we left there at 5:30 and it was snowing and accidents everywhere. Made for an interesting ride home but we made it safely and over all they were good visits.

Thank You (Beau's Family)

On Monday I was able to meet a mom and her little boy for the first time. I met Ashley on craigslist several months ago (the weirdest way). It was like it was meant for us to meet. Her little boy was born the day before Kylee(and a year later) and him and Kylee weighed the same and were the same height. I have Beau's caringbridge page on the side of Kylee's blog page. Ever since we have met we have been talking thru e-mail and we have helped each other out in many ways. Kylee and Beau do not have the same diagnosis but they are similar in many ways. So we finally met in person on Monday and it was so nice to finally meet. She also had a gift for Kylee and she loves them. One is a dog that smells like lavender and she loves it. She grabs at it all the time. There was also a toy in there that vibrates which she loves those kinds of toys and then there is a tube with small beads in it and it catches her eye every time we play with it and she just sits and watches (little brother Keegan also likes that toy). So I just want to say THANK YOU to Ashley and her family for the wonderful gift and all your support.