Kylee's 3rd Birthday and School

Kylee's 3rd Birthday and School

Kylee's 3rd birthday is here and let me tell you it has been an emotional week. I think I have cried just about every day. Kylee started school this week and what a big step that has been. I think more for mom then for Kylee. She was suppose to start on Monday but had a snow day. So her first day was on Tuesday. I took her into the class room and her aide scooped her right up and took her over to the mat for story time and I felt like hey were is mom's transition time. It was like she had always been a part of the class. I left with tears in my eyes. When I came back to pick her up they said she did very well but fell asleep towards the end. When I started talking to her she opened her eye looked at me and raised her eye brows like mom you know what I am doing. She was pretending to sleep so she wouldn't have to do anything. She had off on Wednesday and went back today. When I pulled up to pick her and her nurse up the nurse had the biggest smile on her face. I knew it had been a good day and Kylee was still awake. She said that Kylee did great. Seemed very happy and stayed awake for the whole class. She also said how the therapist have such great tips and suggestions for us. I love having our nurses at school with her because I feel like I can at least live thru them since I can't be with her. I have been with Kylee every day for the past 3 years and to now give that up is really hard. I feel like I am being cheated. That everyone else gets to experience all these great things with her and I just get to hear about it. I know it is hard now but it will get easier. It was a big step.I am so proud of what a tough girl she is and how far she has come. She has had a really rough year medically and this past winter I wasn't so sure she would make it to her next birthday. With that being said my baby girl is turning 3 tomorrow. Where has the time gone. We will be celebrating with friends and family on Saturday with a pajama party. I would like to share this video with you. It is the same as last year but I have added another year to it and am greatful to be able to add another year. Happy Birthday my princess. Thank you God for the wonderful gift you have given me. I apperciate every day I spend with her.

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We Are Home

We AreHome

Well we got home from the hospital Monday day night so we were home before the big snow storm hit. They changed around some of her medication and she seems to be doing much better with that. We also had a ton of labs drawn before we left and are waiting for the results. They are testing her thyroid as the original TSH level came back high and then her T3 and T4 also came back abnormal so they thought they would test again just to make sure. They also did a full lab (can't remember what it is called but they took 20 mls of blood so they are checking for alot of stuff). They are checking all her mineral and vitamin levels to see if there is a reason that she is losing her hair and why it is so dry. One of my fellow 1P36 mom's said her sons hair does the same thing and he is also on Depekene so maybe it is a side affect to the medicine and said that zinc seem to help. I just wish she had her pretty hair back that I could put in pony tails especially now that she will be going to school.

Kylee's Birthday

Kylee's Birthday is fast approaching. December 18th she will be turning 3...wow where did that time go. She is starting school next week. I got all the paperwork to fill out today for "regular" school stuff for her. It just blows my mind. Our early childhood is at our high school. When I took Kylee for a visit to school we went at 8:00 and all the kids were walking into school. I wanted to cry thinking I was talking my little baby into the big high school. As we were making our way thru the hallway with all this high school kids I was thinking...clear the way...watch out...precious cargo coming thru. I guess it is time to let reality set in and realize she is growing up.

My goal was to have Kylee sitting on her own by her Birthday but I am thinking she is going to be a one finger sitter. I have to just keep one finger on her lower back to keep her sitting on her own. I think if we wouldn't of had these set backs with seizures we would have made it so I am hoping for shortly after her Birthday.

We are having a Pajama party to celebrate Kylee's birthday and her moving into her big girl bed. So everyone has to wear Pajama's. Should be fun. I can't wait.

Song

One of my 1P36 family members sent me the below link with a song called The Life That Has Chosen Me. It is such a good song and thought I would share. It is so true. It says don't pity me and I say that all the time. I hate it when Dr's says I am so sorry whenever I tell them my daughters diagnosis. I know it is only natural to say it but...sorry.... sorry for what....that I have a beautiful daughter that has taught me so much about life and made me the person I am today. Instead of showing me pity...offer me words of encouragement...let me know I am doing a good job...that I am a good mom....that I have a beautiful daughter or lend me a helping hand or a hug but don't pity me. With that being said....THANK YOU everyone for all your kind words and encouragement. It keeps me going everyday and I would be lost without each and everyone of you.....you help in your own way weather you think you do or not.

http://www.youtube.com/watch?v=evZtEJOJ948

Increased Seizures

Hospital/Increase Seizures

So...we are back at the hospital. Kylee was sent to the hospital on Thursday for increased seizure activity and she was having crying spells that seemed to last forever (45 minutes to an hour or more). We took her to our primary Dr on Thursday afternoon and they told us she had an ear infection. We then were sent home and had her cry and scream the whole way home. It scared us so much that we called down to Milwaukee and begged them to help us. They told us to take her to the ER. Once we got to the ER she was fine but they put us in patient to watch her. They then decided on Friday to send us to Milwaukee. We got to Milwaukee and they felt it was all related to the ear infection. I said I disagreed and wanted her hooked up to the EEG. So she got hooked up in the EMU (epilepsy monitoring unit-which was closed for the weekend until they had to open it for Kylee) where she is watched on a camera 24/7 and someone has to be with her 24/7. Which good thing Grandma Janice came with me so I get a break once in a while. They also started a new meal program at the hospital that is called 2/4/6 and for that amount of money you can get different meals brought right to your room. You just have to purchase pre-paid tickets to give to them. So needless to say we had a very nice supper tonight with that. So back to the monitoring. They watched her and said she is having about 10 increases on the EEG an hour but isn't showing physical signs of a seizure. They said that because of her underlying condition she will never have a normal EEG which I knew. The Dr took me back in the room where they watch her and let me watch her and watch the EEG so I learned alot about it (I love knowing what I am dealing with...I always want to be well informed). So they have switched around some of her meds and increased one. They will draw labs in the morning and watch her over night and if all is well then we will be on our way home tomorrow. As far as the crying we have found out we have a new girl that now has a voice and feelings. They think her brain has "grown" and she is now able to start to voice her feelings and let me tell you she sure does. She cries when the Dr's touch her, she cries when she is tired, she cries when she wants to be held. All which are "normal" things a child doest and I am so happy to hear it but it took me by surprised because she was so non-verbal up to that point that I thought she had to be in extreme pain which she probably was from the ear infection.

School

I probably should get back to the room but just wanted to post that Kylee starts school next Monday. She will be going Monday, Tuesday, Thursday and Friday from 8:00 am to 11:00 am. We are so excited to be having her going to school and everyone seems so wonderful. She has a very young teacher (Ms. Heather) who seems to be full of energy and a lot of fun. Kylee will also be having a one on one aide (Lisa) as well as a nurse from home with her while she is at school and mom will be standing outside the window taking pictures of her. I said I am the schools new paparazzi.