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.