So, Grace is set up with COTA now. I just need to get all the T's crossed and I's dotted. :)

The kids are just getting over RSV and Pneumonia. The Pneumonia was found very early so it wasn't to bad. It was a long week and a half though. Both of the kids were on breathing treatments so it seemed we were doing them nonstop. They were both on antibiotics and steroids which made them both extra grumpy. The good news is everyone is feeling better and we hope to stay away from that the rest of the winter season.

Gillian's make a wish sponsers are coming over next week. We are all excited for that. Gillian more than anyone else!

Gillian's kindergarten screening is coming up next week too. I can't believe she's going to be in kindergarten already.

Hmm...What else. Oh I am going to finally take out Gillian's G-Tube. After she gets back from her swimming trip this weekend. Just have to put some gauze over the wound tight and if it still leaks a week later they will put a stitch in to help it heal. Hopefully we wont need that.

I guess that's all I can think of for now. I will update when I have more info.

I am so stressed out and tired of dealing with hospitals, bills and more bills. I know I am working with COTA and we are in the process of getting Grace on the account too, but mine and Mike's bills are going to put us under.

When I found out about Grace I got to choose between 2 hospitals to go to with NICU's. I wanted to choose the same one I used with Gillian but I knew the doctor didn't take my insurance. Well I found out that he moved out of the clinic and into the hospital and was told I would not have to deal with clinic. I got over 3500 dollars in bills today from the clinic. I called them and said that I was not told I was seeing someone from the clinic and I made it clear I needed to be informed if I was for insurance reasons. All she could tell me is sorry maam that no one told you. To top it all off they do not have a heartship program like the hospital. She informed me I could set up payment plans with her forr 200 dollars a month. I really can't do that. I was so upset I hung up. I know it wasn't her fault and I don't want to blame her, but I couldn't stay on that phone. Now I have these bills I have to figure out and the hospital bills. I really need a break.

Gillian has been doing great. She started ballet again and still loves it. She also started full days of school today. We are going to try and get her wish set up for Make a Wish foundation. She wants to meet cinderella and mickey mouse. I can't complain like I said we all need a break.

I'm still getting used to this 2010 thing! Gillian has been doing great. She just started ballet again, which she is super excited about. The only bad thing is she has been acting out pretty bad. She has a major attitude problem. Hopefully she gets over that soon I don't know how much more I can handle of that.

Grace is doing pretty well she is up to 9lb and 11oz. They have changed her diagnosis on us. It's back to polycystic kidney disease. I really do not understand all this. Gillian had dysplastic which is a fluke and something just developes wrong while in utero. PKD is a genetic disorder. The 2 of them are not even related. How crazy is it that I have 2 kids with 2 completly diferent kidney diseases. :( What luck huh. We are working on getting Grace set up on the account with Gillian. Hopefully sooner than later as the bills are piling in!

That's really all for now. Nothing really exciting has been going on!

I posted a couple pictures below. Gillian's results from her kidney function test came back perfect. We don't have to do another GRF for 2 years! Awesome news for us lets just pray she stays healthy.

She is very excited for Christmas. She wants everything she sees on TV and everything she sees in the stores. I am sure that's a normal 4 year old though.

Grace is doing great. Still eating really well. She has a check up tomorrow with her pediatrician. I'm sure it will be fine. She is a very gasy child which leads to some long nights. :( It's no fun for us, but it does make her want to eat more which will help get her to that goal weight of 22lbs for transplant. It's bad for her though because I'm sure the constant eating doesn't help the gas situation.

That's all for now. Everyone is great our way.

Have a Merry Christmas!

It's been a while since I have updated. Gillian and Grace are both doing well. Thankfully we have avoided all the sickness going around.

Gillian had her one year post transplant on December 8th! I can't believe it's been a year already. We had a doctors apt. in St. Louis. Gillians labs are still looking great. Gillian didn't have to have a biopsy thank goodness. What she did have was a GFR (Glomerular Filtration rate). It's one of the most acurate rates to show a kidney function. She had to get an IV for the test and they did a bunch of blood draws for 4 or 5 hours. We are supposed to hear the results today sometime. She did really well with the test even though it took 3 tries to get the IV.

Grace finally got her official diagnosis. She does not have polycysitic kidneys like the first hospital though. SHe has what is called Multicystic dysplastic kidney disease. What Gillian had but this time add cyst on top of it. My poor kids cant seem to catch a break (or me at that)!

Her number are a bit higher than what Gillians were at 2 months. Pretty much we have the same plan as Gillian. Get her to 22 pounds for transplant. :( Unfortunatly Grace got my blood type just like Gillian did. That was the hold up on Gillian getting her kidney. We waited for almost a year on the UNOS list for Gillian because B+ is not the most popular blood type and my insurance will not pay for a living donor.

That's really all that has been going on. I will try and let you know the results of Gillians test soon.

Gillian is having some allergy problems. She has been miserable all day today. She has the watery eyes, itchy eyes, runny/stuffy nose and when she gets allergy issues she always runs a low grade temp. It was 100.5 earlier, but the last time she had her problems she ran a temp for almost a week straight that got to 102 at one point. I hate not letting her go to school this week because they are having their harvest day party. I know they have the no temp for 24 hours rule, but really it's just allergies and the only reason she runs a temp is because of the whole being immunosuppresed thing. I guess I will see how she feels tomorrow.

Of course all this happens at the same time we bring home Grace. I have a grouchy 4 year old and a 19 day old that thinks she needs to eat constantly. I finally starting giving her a pacifier so she has something in her mouth. It's helped she was wanting to eat every 1 1/2 to 2 hours and just snacked. Hopefully she will eat every 3 hours and take more and sleep a bit longer.

Thats it for now. Will update later.