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.

Make photo slide shows at www.OneTrueMedia.com

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.

School

Pictures

Kylee at story time at the library for Halloween

Kylee and her brother at story time

Kylee in her swing in the basement. She loves to swing. Can't wait to get our new swing.

When Kylee is tired she just falls asleep where ever she wants to.

School

Our life has been so busy the last few weeks. Kylee has been home from the hospital for a while and feeling much better but we have been busy with getting her ready for school. We have had lots of meetings with the nurse, PT, OT, Speech, vision teacher and mobility specialist. Kylee's IEP is on Dec 2nd and she will more then likely be starting right after that with a slow transition into school. How time has gone by so fast. It seems like just yesterday we were sitting in the NICU with her and now she is going to school. It brings tears to my eyes just thinking about it. I think she is really going to like school and do wonderful. We go on Friday to meet her teacher and see the class room as well as meet with speech and PT.

Nurse

We have hired 2 nurses as one of our nurses has left. We hired a Tuesday nurse who I must say I am in LOVE with. She has lived the life and I think she will be a great resource for me. She has a 23 year old daughter with CP and decided to become a nurse after that....hmm....sounds like the foot steps I want to take. We have also hired another nurse for 1-2 nights a week and for an occasional weekend. She is a "new" nurse but I always say that is not bad as they often have fresh new ideas.

Big Girl Bed

Kylee has been sleeping in her big girl bed for a week now and loving it. My dad has made a few adjustments to a twin bed so she has more room to roll around. She is so happy in there she smiles and laughs every time you put her in it. I can't thank my dad enough for everything he has done for her. He also made her a wooden bench for us to practice sitting on and also to place toys on while we are practicing sitting. Kylee has started to get more interested in toys and is reaching out for them which she hasn't done since she was 6 months old. We are so excited with the progress she is making developmental wise. I will try to post pictures of the bed and bench next time....I also want to post pictures of her on her school trip on Friday.

Standing
Here is a little video of Kylee standing next to the sofa. She has to lay over the sofa but it is a start. This was my first time trying to tape anything on my camera so it is side ways and doesn't last long because she moved her leg and I thought she was going to fall but she was only readjusting herself.

Hospital Visit

Don't have much time to post right now but just wanted to let everyone know that Kylee has been in the hospital since Saturday and we just got home today. She has c-diff yet again and had stuff coming out both ends on Saturday so we took her in for what we thought would be a quick IV and sent on our way but it didn't happen that way. She is doing much better and we are all happy to be home. I will try to post again soon.

Trip to Milwaukee

Trip to Milwaukee

So Kylee and daddy made the trip to Milwaukee on Thursday and things went really well. In fact I am very jealous. Out of the 3 times Kylee has gotten her GJ tube replaced I have not been able to go back in the room with her. Jason acutely got to go back and stay in the room the whole time. He said that when they pulled the old one out one of the ladies looked very strangely at it and said oh we usually take those out. Here they left what is called the stringer inside her. I think it is a device they use to help guide it in. Didn't sound to healthy but at least it is out and we have learned once again that we should just go to Milwaukee and not have anything done close to home. She also saw the ENT and said her ears look great so hopefully we make it thru the winter with no ear infections.

Physical Therapy

Kylee is doing so well in PT. I am thinking about taping a session so I can post it because it is just unbelievable how well she is doing. She can stand up with much less support then she use to. On Thursday the PT just kind of had to hold her at her waist and chest but she did all the leg work. She is also getting better about being in the crawl position and he said she is ready to crawl. He thinks if we just work with her on it a little every day that she will learn to crawl. I'm always so happy after PT because she does so well. I am also sad thinking that she only has one more session with him before he leaves us. That will be very sad. He has come so far with her. Oh ya...he also brought to my attention that Kylee has grown 12 inches in one year. She was 26 inches last year at this time when we ordered her stander and at her last Dr visit she was 38 inches. CRAZY!!!!!

Bed

We are in a bed search..Kylee has outgrown her crib but couldn't decide what to do for her next bed. We knew there was no way we could afford a sleep safe bed. So hopefully with the help of our wonderful Grandpa Eddie (my dad) she is going to have a new bed by her birthday. We are purchasing a used captain bed (a bed with drawers under it) that has a very high head and foot board. Grandpa is going to sand it down and re stain it for use and then make side rails for it out of wood and plexus glass (kind of like the sleep safe beds) that will be on hinges to drop the sides down. Should work out good. Her birthday is for a couple more months but we have decided to do a Kylee needs a new bed party and so we are having a pajama party and everyone has to wear there pajama's. Then we are going to ask for new things for her "big girl bed".

THANK YOU ASHLEY

Kylee got the best present in the mail a couple of weeks ago. We usually put a plain old white cotton 2x2 around Kylee's feeding tube site. One of Kylee's friends had a really cute one (Beau) and so I asked his mom where she got them from and she said her mom made it. So not long after that we got a gift in the mail with all kinds of girl cloth 2x2's. There was Hello Kitty, flowers, lady bugs and then a Santa one for Christmas. They are so cute. I even got the laundry bag to wash them in. It was the best gift every. I can't thank Ashley and her mom enough for them. I also have to let you know the lady in Milwaukee that put her tube in commented on how cute it was and wanted to know where we got them from. Jason said from a good friend :)

(I will try to post pictures in the next couple of days...I promise).

Eating

Baby Food and Milk

Kylee has been doing really well in the eating department lately. I know we have a long long ways to go but it is a start. She has been eating some stage 1 and stage 2 baby food pretty well. She can eat anywhere from a couple teaspoons to a couple tablespoons. She also started taking some liquids out of a bottle. She isn't taking a lot...about 1.5 ounces but it is a start. Sometimes I just have to let it drip in her mouth and she doesn't have a good suck eat but I will take whatever I can get. She makes the sucking motion with her lips just doesn't have a strong suck. So we will just keep working on it. Practice makes perfect. We have also gotten her down to only having to be on her feeding tube for 18 hours which is so nice. Now it is time to push the luck. The Dr said to shoot for 14-18 hours but that some kids can do 12. He said it just depends on what she can tolerate.

C-diff

What can I say about C-diff...it is just no fun. I feel like the number 2 diapers never stop. We are just about done with the medicine it is still coming out in full force. I am thinking we are going to have to do another sample and probably another round of medicine. We have decided to purchase some disposable bed chucks to help save on the laundry otherwise we were having to change her sheets 1-2 times a day because when she goes it goes everywhere. We also had to clean our carpet today as she had a major mess earlier in the week and another one today.

Therapy

Kylee has been doing really good in therapy. She is still able to stand on the side of the sofa with no knee immobilizers for about 10 minutes. She is still doing good at sitting by her self we just have to increase her strength. She gets really tired out with it. Her HOPSA dress (a therapy vest hooked up to a pulley system.....I will have to take a picture of her in it and post it....she looks like she is ready for take off in it) she is doing really well in also. She can only stay in there for about 5 minutes but she is very active it in for 5 minutes. She is putting her legs down and swing herself all over the place in it which no one really thought she would do anything in it so I guess that is a big step. Her swing we haven't been using much as it is not the swing that the therapist wanted so we are in the process of trying to purchase the correct swing. The one we have is for a bigger child and not to comfortable for her.

Kylee has started to do her own therapy...she rolls her way over to the sofa...puts her legs up on the side of it and then lifts her butt off the ground. She does it over and over and over. She loves doing it. It is great to help strengthen her legs but it is soo funny how much she loves to do it.

Our PT Steve is leaving at the end of the month and we are really going to miss him. He works so well with Kylee and she has come so far but at least his time with her would have been almost over with anyway as she will be starting school soon which leads me to my next topic.......

School

So the whole school process seems to be a very long process and I feel like we have been working on it forever but I am think there should be an end in sight. I have signed all kinds of paperwork and talked to all kinds of people. We still do not have a start date yet but for sure by her 3rd birthday however we were hoping to do a slow transition starting before her 3rd birthday. We have also not decided if she will go in the morning or afternoon. She like to sleep in til 9:00 but then she takes a nap at 2:00 so really neither fits into her schedule but I guess we will have to get her on a new schedule once we find out.

I have to laugh because I am so afraid to take Kylee to the Dr to get her flu shot because of all the germs but yet I am not even thinking twice about sending her to a germ infested school.

Appointments

This week Kylee has appointments in Milwaukee on Thursday. She is getting a new feeding tube placed in the morning and then ENT follow-up in the afternoon. I think daddy (Jason) will be making the trip all on his own so that I can work. He does a wonderful job with her but it is hard for me to let go and let someone do something that I normally do and not be in on the appointments. I guess I have to let go some day :)