Diet and Thyroid

Diet/GI and Thyroid

Well Kylee's thyroid test has come back and of course she follows no pattern for either hyper or hypo. Her TSH is high and her T3 is on the lower end of normal low and her T4 is high. So the decision has been made that we need to see yet another Dr. We will be adding and endocrinologist to our list. In the mean time GI has decided to cut her calories. So she is going from 32 oz of formula to 29 oz and then the rest she will get as water or as "gold" (pedialyte...that stuff can add up when you use it daily). Kylee loves her "gold". If she is a little sleepy if you give her and oz or two of that you would think you gave her a can of Mountain Dew.
We are also done with the first round of medicine and it seems to have slowed the #2 diapers down some so we are hoping that will do the trick.

Sitting

Kylee is doing so well with her sitting. She can now sit all by herself for about 5 minutes. After that she wants to throw herself back but if you just poke her with one finger she will remember to sit back up. We are so proud of her. I wouldn't call her an official sitter yet as I don't feel comfortable not being right there when she is sitting but I think we are on our way.

Monday

Monday will be a big day for us. We are heading to Milwaukee for a fun packed day. We start off with getting a new GJ tube place. Then we are heading over for our first dentist appointment. Which should be interesting as she won't let you in her mouth for very long but I am hoping they will have some tips for brushing her teeth. Then we go to neurologist. Our neurologist is such a busy lady that she books out years in advance so we have not seen her since Kylee got her dx last January. I think our next appointment with her is scheduled for 2011. We do see her NP in between those visits and do lots of calls.

One Year

I can't help but think back to a year ago and cry. Last year at this time I was holding my baby girl in my arms and telling her how much I loved her and that if she was tired of fighting that I understood. It took me a whole 2 years to come to terms that I could loose my little girl and that it would be ok. It would be hard but it would be ok...she would be in no pain and wouldn't have to fight so hard for every little thing. Last year at this time she was in the hospital on high levels of oxygen and her heart was not functioning probably. She was at the Neenah hospital and they decided to send her to Milwaukee to ICU. The Dr asked me if I had a DNR on her and I lost it. I never had anyone ask me that before and that made me realize how bad she was. Let me tell you that is a hard decision to make and a year later I still have not been able to make that decision. Kylee is a fighter and has come a long way since this time last year. I am so proud of her and grateful for each day I have with her.

Theme Week and Bus

School Bus

This was Kylee's first week riding the bus. She LOVED it. She has blown me away with how well she is enjoying everything. On Monday I had to go into work so I put Kylee on the bus and was crying my eyes out (I know...It wasn't the first day of school but another big step for our little girl). I got in my car and the song on the radio is the song on her blog page. So of course I cried some more. Then I got a text from Kylee's nurse (thank goodness) saying how much enjoyed the bus ride and that she was looking out the window on each side of the bus. That made me feel so much better.

This is Kylee getting loaded into the school bus.

This is Kylee inside the bus.

This is the bus driving away with my daughter and me crying.

Theme Week

This week was theme week at school and I had so much fun with. Monday was Crayon day,

Tuesday was twin day, Thursday was super hero day and Friday was Bulldog/school spirit day.

So here are some pictures from the week.

This was Monday when she was a pink crayon.

This was Tuesday twin day. Her and her nurse Teresa are dressed like twins.

This was Thursday super hero day. Kylee is spiderman and Super Nurse Marsha.

Kylee on Friday for Bulldog day..a little to early in the morning for her.

Kylee and my niece Danelle at the pep assembly. Kylee's class is at the high school.

Kylee at the pep assembly.

GI Appointment

I called on Wednesday to schedule a GI appointment as it has been 3 months since we had seen him and Kylee has still been having #2 issues since December. It just happened some one cancelled so we were able to get in on Thursday. We got her there and they weighed her. She is now up to 28 lbs and 10 oz. Now this is good and bad. We tried for so long to get Kylee to gain weight and now she is at a healthy weight but she is starting to lean the other way. She gained 2 pounds in the last couple of months. So he was going to cut back on her calories but then our nurse brought up her thyroid test. She had 2 abnormal thyroid test in December and she was due to have it checked again in January. So we are having that checked next week. If she is gaining weight because of her thyroid we will have to see yet another Dr to get that all figured out. If her thyroid is fine then we have to cut back on her calories. This is very common in 1P36 kids (weight issues and thyroid issues). Then we talked about the diapers. He feels she has an over growth of bacteria in her small intestine. He told me all the symptoms and she had everyone of them. They treatment for it....same as c-diff. So every month from the 1-7 of the month she is going to take a medication. If the diapers stop or get better then we know that is what it is and she will stay on that routine. Medicine every 1-7 of every month. If it doesn't work there is a combo of 3 medications that she can take the same way as the other one (1-7 of every month). We are hoping one of those works. I guess you can test for it but you have to be able to follow directions and blow into a tube when they tell you to. Then we had one last issue. Kylee GJ tube has been leaking but only when we give her medication. It doesn't leak any other time. So he thought first we should try replacing it and if that doesn't help then we are going to go to the next size. He said it makes no sense that it doesn't leak any other time. He said Kylee you are a mystery and we all laughed because we know she is. He also said one last thing that really made me feel good...at the end of the appointment he said he always enjoys seeing Kylee and basically that she has a good family and good nurses that he enjoys seeing also. Just a nice fuzzy and makes you feels good. You need that every once in a while.

School

Pictures

These are pictures of Kylee visiting her classroom for the first time and of her first day of school

School

Kylee LOVES school. She is having so much fun. When she comes home she is so bright eyed and acts like she just wants to tell me every little thing about her day. Her arms are waving around and her legs are just a going. She has totally blown me out of the water at how well she is doing. We are taking another step this week. The bus. Her normal pick up is suppose to be 6:55 am...right...like she is going to ride on the bus for an hour. The kids all get dropped off at 8:00 so the bus is going to come back and pick her up. That way the other kids will be all ready by the time she gets there (they toilet them, go over there paperwork..each morning the parent has to fill out about the night before, what they ate, what number we can be reached at). She is then going to ride the bus home with the other early childhood kids but that is just a 25 minute ride. Her nurse will also be riding the bus with her. She will be transported right in her wheelchair so we have gotten some portable ramps so we can get her all ready in the house and then just wheel her down the steps to the bus. So I will be out there tomorrow taking pictures and sending the camera with the nurse for pictures on the bus. We have also been sending a throw away camera to school in her backpack and the nurses have been taking pictures of her doing different things at school. I can't wait to see them.

This week at school is also theme week. Tomorrow they have to dress as crayons and she is the pink crayon. Tuesday is twin day so her and her nurse will be dressing like twins. Thursday is superhero day so her and her nurse are going to dress up but not sure as what yet and Friday is school spirit day so they have to dress in Bulldog gear. Should be lots of fun and I will take pictures each day to post.

Sitting

Sitting is something we have been working on forever but she is doing so good with it. She can sit for a while by herself and then when she gets tired she just needs a little support at her low back. She is also starting to catch herself when she starts to fall which is huge. She has caught herself several times while sitting and once while we were standing next to the sofa. Small steps for some but huge steps for us.

Beau

Please keep our friend Beau in your thoughts and prayers. He has not been feeling well lately and him and his family are having a hard time. He has a great mom and I know they will pull thru this. One step at a time :)

School

School

It has been a while since I posted. Not too much new to tell everyone. School is going well for Kylee. She is almost up to staying for the full 3 hours and will probably start riding the bus next week. I called the bus garage on Friday and pick up is at 6:55 am and school starts at 8:00. I felt that was way to long for her to be on the bus so we are going to have them drop off all the other kids and come back and get her. So she probably won't be starting school until 8:15 but that is better then an hour bus ride. Then she will ride the bus home with the other kids which is only 30 minute ride home. Our nurses will be with her the whole time. I think on Friday they were happy they were there. Kylee was so sleepy when she left for school. The nurse said once they were there for a while she looked like her lips were blue and her hands and feet were so cold and her fingers didn't have good response time. Our nurse decided to check her BP and couldn't hear it. When she finally got it she said it was normal but very faint. So they were going to send her home when just like that she woke up and everything was great. It is funny how fast she changes. I'm still adjusting to her being in school. She just seems like such a big girl. She has a little red headed boy in her class that really likes to play with her (taking after mom with those red headed boys). She made us a wonderful Christmas present. It was a heart with her hand prints on it and a little poem about hand prints. Enough to make anyone cry.

Diapers Never End

Kylee has been having major issues with #2 diapers again. They seem never ending. Around Christmas time we thought she had C-diff again but the test came back negative. She was so uncomfortable and would cry until she would go to the bathroom. So we tested her again and it is still negative. Her bottom is getting so sore from going so much. You no more then change her and 5 minutes later you have to change her again. No fun for either of us. Then last week one day she had blood coming out of her stomach drainage tube. I called the Dr about it and he said he just thinks her stomach is irritate and to clean her stomach with salt water. I have to push salt water into her tummy and then leave it in there for a while and suck it back out. This is suppose to help it heal. Just one more thing to added to my nursing degree :)

We also found out that she was lacking some of her vitamins. Her milk she drinks is suppose to have everything she needs but she is lacking magnesium and selenium so 2 more medications to add to her day. She takes so many. We also have to have her thyroid checked again and if it that is not better she will be having some more medication added to her day. Her TSH level and her T3 and T4 were all abnormal for 2 tests in a row but they wanted to give her a month and see if it changes.

Other then that not much new to post. Things are going good. I have pictures but can't find the cord to the camera so will post them as soon as I can find it.

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.