What a Week

We had one heck of a week this week. We had several deaths. Collin had to go to the ER on Monday and get his first stitches. He got wound up in a swing and got the skin on his side caught in it and it pulled the skin. It happened at our sitters house and Jason picked him up not knowing it happened because it had just happened a few minutes before he got there. He called me and I could just hear Collin screaming in the background. I'm sure it will be the first of many. With all that I have not been sleeping well at night either. I have been sleeping for about an hour and then am awake for about 4 or 5 hours. So I am tired out.

Surgery

Well we have decided to go ahead with the surgery to remove Kylee's port. It will be taken out on July 9th. We are going down on the 8th for her pre-op and then it will be taken out on the 9th and we are hoping to come home on the 9th if all goes well. We decided that if we are not going to be needing lab draws every week like we did when she first started with all her seizure meds that we shouldn't be risking the chance for infection and should get it out. Plus it saves me a monthly trip to the dr's office to get it flushed with heprin if she is not using it. So that is the plan for now. We are going to get our name on the list for the Ronald McDonald House 5 days before the surgery (that is the new policy for the one by us..you use to be able to call anytime even if it was months in advance) and hopefully we get a room there. If not I do know how to get to the Hampton so we can always stay there. You get a discount so the room is only 50 dollars however it is sad when the staff that works there remember you. The last time we stayed there the lady said to my dad oh your grand daughter is still in the hospital.

Glasses and Equipment

Kylee's glasses came in yesterday so I am going to take her in on Monday to pick them up. I can't wait to get them. My mom and our nurse Marsha went in to try the frames on her so I didn't get to see what they looked like on her. I just seen them in the book when I picked them out. I was also very happy with the price. The last pair we got cost us around the $200 range. They told me the state did not cover anything. This new place we went to said the state cover lenses so we didn't have to pay for this. So nice. Speaking of state...Kylee is up for her Katie Beckett (her insurance with the state for disabled children) eligibility already. It goes so fast. Every year you have to fill out a huge packet of papers and the every other year you fill the papers our but also have to have a visit. This is our year for the visit. There is no doubt in my mind that she won't qualify it is just the time it takes to do all of it.

The CP center of Green Bay is going to see if they can help us purchase Kylee's car seat. I have to once again fill out a ton of paperwork and then they will sit down and discuss and decide if they will help us or not. I didn't know that they would do that because Kylee does not have a diagnosis of CP but I guess that doesn't matter.

Kylee has really been getting in to watching movies lately. Our nurse Marsha brings her laptop and then puts Kylee in her chair with the laptop as close to her as possible. She has been watching her sign language videos and her Rock and Roll Strawberry Shortcake (thanks for the movie the Klings...she loves it). So I have been asking around for a "junk" laptop and someone at work thinks they have one for us. She is going to try a movie in it this weekend. I will be so excited if we get one.

Does She Really Understand?

Lately Kylee has been answer questions when you ask her something. Well answering you non verbally. It almost seems as if she understands you. Which makes you wonder if she understands more then you think. The other night she did not want to get her teeth brushed and I kept saying Kylee doesn't want her teeth brushed and she would shake her head no. Then I asked her if she liked her Strawberry Shortcake video and she got all excited and starting smiling and laughing. Signing all done to her when she is all done eating and she shakes her head yes or smiles. Now she doesn't do this stuff every day but a lot so it makes you wonder. If only I could get inside that little head of hers and know what she is thinking.

Happy Father's Day

Just want to say happy father's day to all the father's. Kylee is very lucky to have a very special father. He takes such wonderful care of her. Life is not always easy when you have a child with special needs. He does things for her things that I know he never in a million years would have pictured himself doing. Taking in #2 samples to the hospital, checking oxygen levels, dealing with feeding tubes, endless Dr appointments and the list goes on and on. Not only is he a great father to Kylee but to our sons also. I just want to take this moment to say THANK YOU for all that you do. I know I don't say it often enough. Happy Fathers Day!!!