We are home

Back Home

Well we got home from the hospital on Monday. I have never been so happy to be home and get back to work (well I maybe could do with out that but it is a part of life) and back to a routine. Kylee has been doing really good on her new medicine. They have taken her off 2 of her old medicines and down on another one. It is amazing how much she has changed. She is much more verbal now and lets you know when she don't like something. One night this week she started crying and Collin didn't know what to do. He kept rubbing her and saying it is ok. Then he said mom I think Kylee misses dad I think he needs to come home from work. It was so cute because he just new that she doesn't usually cry and he didn't know what to do. I am hoping that this new medicine continues to work. The past week has been a roller coaster. I had to work really hard to get Kylee to Milwaukee and once we got there and got the diagnosis of Lennox Gastaut Syndrome it just broke my heart. As much as I wanted her to be at Milwaukee I just didn't want to hear those words. All I could do was cry. I felt like all my hopes and dreams for her were just crushed. I so badly just want her to be a "normal" child. I feel like with every new diagnosis she gets it pushes that hope further and further away. It is just so hard to accept it. You would think after 2 years I would have accepted that she will not be like other kids but I guess I wouldn't be a parent if I didn't have high hopes for her. Now seeing how well she is doing on the medicine part of me wants to get excited but the other part of me doesn't want to get my hopes up. I guess all I can do is take one day at a time and enjoy each minute I have with her. She is truly a blessing and I can not imagine live without her. She has taught me so much and made me a much stronger person.

Collin and Ronald McDonald House

Ok...On a much lighter note Collin got to go to the Ronald McDonald house for the first time and he just loved it. He was so excited to get to play video games for free and he got to go to the toy closet and pick out any toy he wanted. While we were there he saw some boys bring in bags and bags of pop tabs. He asked what they were for and I explained to him that they get money for those and that lets people like us be able to stay there while they have family at the hospital. So now Collin wants to start saving pop tabs so other people and us can stay there. So if anyone has any pop tabs I would be more then happy to take them off your hands. We will drop them off at the house with our next trip to Milwaukee. Sounds like we are going to have to go there every few months now that we have switched nerologists.

ABR and MRI

Kylee is scheduled to have a ABR (a sedated hearing test) and an MRI on monday at Thedaclark. Kylee has failed a few hearing test but we are not sure if she fails them because she can't hear or because she don't like to have her ears touched (they have to put this little machine in her ear like a ear thermomitor). So we decided to have the sedated ABR done so we can know for sure where her hearing is at because speech is so important right now. We decied that since she was going to be sedated for that then we would do the MRI also. Some of the other 1P36 kids have teethered cords and other spinal issues so we just want to make sure she is ok as she has never had one done before. We are also starting back up with therapy next week. With being in the hospital for a week she didn't have any therapy and has gotten kind of weak.

Thank You

I would just like to say THANK YOU to everyone for all your help and kind words during Kylee's recent hospital stay. It made things alot easier being so far away knowing that my 2 boys were being well taken care of. Also, thank you to my mom for being by my side the whole time we were at the hospital. I can not thank you enough for that.