We Are Home

We are home from the hospital. Just got home a little while ago. Kylee is still on oxygen but is doing ok. She really needs the oxygen when she is sleeping. I am hoping it doesn't develop into pneumonia as she just doesn't seem strong enough to cough all that junk up. The nurse said there was 5 kids up there and 4 of them had RSV so it is going around really bad. She said older kids usually just get diagnosed with bronchitis. Kylee use to get some really expensive shots to prevent RSV but she is now to old for them. Our insurance company is probably also kicking themselves in the butt. Since Kylee started school we have had to leave our portable oxygen tank at school because she can't transport it on the bus. We asked our insurance company for a 2nd one in case she would get sick and we would have to take her some where. They decided to deny it. This item cost a couple hundred dollars. Now that they didn't pay that they will be paying for a 2nd ER visit and an ambulance ride. If we would of had it our Special Needs Dr would of just called the hospital and we would of taken her there ourselves and had her go directly inpatient. Sucks to be them...maybe they should listen to this mommy. So I called yesterday to let them know and they are going to re-evaluate it.
Kylee has not been on oxygen 24/7 since she was 1. It seems weird having her back on it and I have to get back into the swing of all the extra stuff that goes along with it.
We would like to thank everyone for all there prayers, well wishes and help. We would like to say a special THANK YOU to our neighbors Steve and Jill. We will be in our house 2 years in June and Steve and Jill welcomed us with open arms. They help so much with our kids. We are truly grateful to them.

RSV

Just want to post a quick note that Kylee is in the hospital in Neenah with RSV. She is on oxygen and neb treatments but is doing pretty good. Hoping it will be a short stay.

Cookie Monster

Cookie Monster

Last Friday was Kylee's Valentine's Day party at school. I got a phone call and when I answered it they said hi Karen this is Ms. Heather (Kylee's teacher) and my heart sank. I thought something must of happened at school and she must of heard it in my voice. She says no no this is something good. She said I just wanted to call and let you know that Kylee is eating a cookie and is really liking it. We video taped it and would like to send it to you. I could of cried. She has never eaten anything like that before. She said is was nice and warm and fresh from the oven so it was really soft. They tried to e-mail me the video but the file was to large. Then on Monday when we were in Milwaukee we were eating lunch and we were feeling bad eating in front of her and so I gave her some of my cheddar broccoli soup to try and she liked it and didn't fight me on every bite. I am so proud at how well she is doing eating.

Appointments

Well Monday was a fun filled day of appointments. We started out at radiology at noon for a new GJ tube (to Ashley's mom...we had one of you button covers on again and they loved it). Then at 1:00 we headed to her first dental appointment. Lets just say she did not like it at all and screamed thru most of it but the staff did a great job with her. She had lots of build up on her teeth but they said that is very common with kids who are tube fed. They cleaned them up really nice and then gave me a few tips on how to brush her teeth. They said some parents use a rubber door stop to stick in there mouth to keep it open so they can get in good and brush. They also said to use a regular tooth brush and toothpaste (we were using a baby tooth brush and toothpaste). Then we headed to neurology. That was a never ending appointment. Our appointment was at 2:30 and we did not get out until 5:30 (we were just seeing the Dr no tests or EEG's). They think Kylee is doing great. She is still having 3-4 seizures a day but for the type of seizures she has that is really good control. Plus her seizures only last 1-3 seconds. She wants to get 100% seizure control but she thinks we are on the right path. So they have decided to take her off 2 of her seizures meds in hope that the 2 they leave her on will work better. So we are slowly taking her off of them and just need to watch how she does. So we left there at 5:30 and it was snowing and accidents everywhere. Made for an interesting ride home but we made it safely and over all they were good visits.

Thank You (Beau's Family)

On Monday I was able to meet a mom and her little boy for the first time. I met Ashley on craigslist several months ago (the weirdest way). It was like it was meant for us to meet. Her little boy was born the day before Kylee(and a year later) and him and Kylee weighed the same and were the same height. I have Beau's caringbridge page on the side of Kylee's blog page. Ever since we have met we have been talking thru e-mail and we have helped each other out in many ways. Kylee and Beau do not have the same diagnosis but they are similar in many ways. So we finally met in person on Monday and it was so nice to finally meet. She also had a gift for Kylee and she loves them. One is a dog that smells like lavender and she loves it. She grabs at it all the time. There was also a toy in there that vibrates which she loves those kinds of toys and then there is a tube with small beads in it and it catches her eye every time we play with it and she just sits and watches (little brother Keegan also likes that toy). So I just want to say THANK YOU to Ashley and her family for the wonderful gift and all your support.

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.