My doctors apt. went well yesterday. My fluid level is remaining around 8 and my stress test are coming back well. Gillian, mike and Grandpa Bruce are heading down to St. Louis tonight for Gillians monthly apt. She has a cold so hopefully everything will be ok. Her nose is running like crazy and she has a pretty bad cough. There is nothing I can really do though. SHe's not running a temp., so it's just robitussin and benadryl and a humidifier at night.

Today was my first day to take Gillian to school since I got out of the hospital. It was going well. We got to school I took her potty then to her classroom. We hung up her backpack and then she just lost it. She was crying because she was scared I wasn't coming back to get her. THe last time I dropped her off I didn't come back. I was put in the hopsital. Of course this about made me start to cry too (pregnancy hormones). LOL...I picked her up and kept promising her I will be back to pick her up and she should just have fun playing with all her friends today. Then her teacher came and got her from me and told me to leave it will be easier for her. So I got to my car and of course lost it. It's so hard watching her be so scared. Even though I am sure she hoped right down and started playing.

I will let everyone know how Gillian's apt goes. :)

I got home on Friday night and had a long night of sleep. Gillian and I were in bed at 8:30 and I don't think either of us got up until 8:30 the next morning. It was nice to sleep, but I still don't feel like I've cought up on it. Probably because I am stuck sitting around the house.

It's nice being out of the hospital, but now I always have a constant worry that something could go wrong. I am always waiting to feel Grace move and she is still moving plenty. I have to drink lots and lots of water and now I understand how Gillian feels! It's hard to drink when you don't want to. :)

I think the hardest part about being home is Gillian. She is always wanting to do something. Which I don't blame her she is only 4. I would want to be on the go too. She was begging me to go to the park, mall and grocery shopping already. She must want out of the house if she wants to go grocery shopping. It's hard telling her no. She shouldn't have to be cooped up in the house just becuase I have to be. It makes me wonder if she would have been better if I stayed in the hospital. Although I know she missed me.

I have 2 doctors appt. this week. One on Tuesday morning and one on Thursday morning. I think they are going to do ulrtasounds and check my fluids then send me over the the labor and delivery floor at the hospital to do a fetal moniter.

Just watned to give everyone a quick update. Please pray that Gillian will start to understand things a little better and not feel left out! For her sake and mine.

Yaya. I'm being discharged from the hospital today. I havn't see Gillian since Monday morning so I'm ready! The doctor wanted my fluid level above 5 to go home and it was at 8 today. Gillian's fluid levels were always around 4. So, even though Grace is going to have dysplastic kidney's maybe hers will last a bit longer than Gillian's. I guess only time will tell.

I will be seeing my home dr. 3 times a week and I will be driving here to champaign once a week. I am done with work and on bed rest. I can drive to my appts. and take Gillian to school, make food, but other than that lots of water and rest. Have to keep Grace happy! It's going to be hard for me. I am the kind of person that can't stand just sitting at home. I want to be somewhere even if it's just sitting at someone elses house. It's going to be hard for Gillian to understand we just can't up and leave to the mall or shopping or to a resturant. I have alot of people already volunteering to hang out with her on weekends though. That will make her happy.

So that's the latest. I will update soon.

Well I am going to have to kids to put through a kidney transplant now. On top of that the doctor came in to talk to me today and informed me that 98% of the time dysplastic kidneys are a fluke things just develope wrong. It only happens twice 2% of the time and we fell into that. So here's the next plan. Mike and I need to be tested for kidney disease because more than likely one of us may have adult onset polycystic kidney disease. We are both praying that we are both carriers and neither of us have it. Becuase in the long run that means dialysis and transplant. Can you imagine having a family of 4 and 3 of us need a transplant? UGH...

So here's are next big step. We have to find out if our insurance and Kroger will pay for our testing. They may say it's a pre-existing disease and drop us from the insurance. That obviously wouldn't be good. So we have a few phone calls to make. Also Mike is going to the hospital today because we are worried he has gout. He's been having alot of pain and swelling in his feet and elbows. So it's been a very stressfull week.

Sorry to vent. Just wanted to update too.

Leslie

I have been admitted into a hospital with a specialist. I've had the joy of being hooked up to an IV getting IV antibiotics shots of steroids, leg compressors and labs drawn 3 times. I guess I shouldn't complain it's nothing compared to what Gillian went through.

Gillians baby sister does have dysplastic kidneys. My fluid is a bit higher than it was with Gillian but still low. I was told this could be a good sign maybe she wont have to be transplanted until around age 7 or so. I guess if thats how you want to look at it. I will hopefully get out of here bye Saturday and they will moniter me from home. I will have to drive into this hospital which is about an hour from home once a week and go to my normal OBGYN 3 times a week for ultrasounds and NST. They are hoping to get Grace to 34 or more weeks like Gillian, but there is always that chance I could have to deliver at anytime with my fluid being so low.

Keep us in your thoughts....We need them.

Leslie

Gillian has been doing great. Her labs are back to normal and continue to look good. We head back to St. Louis next week for another check up.

Gillian started Pre-School last week and she is loving it. She had to tell me the other day that her class didnt' get snacks because they wouldn't clean up there mess. She told me she will be cleaning next time so she can have snacks. She also told me on her first day of school she showed all the kids her new kidney, which wouldn't be so bad except I sent her to school in a dress. I went to tell her teacher I was sorry but she wasn't upset. She said it helps the other kids to understand a little better to be able to see the scar and feeding tube. I told Gillian no more lifting her dress up in class. LOL

On another note. We are having a girl! On a sad note I found out today that my fluid is low and her kidneys are bright. These are the same things that were wrong with Gillian. So it looks like we are going through this again. I am going to see a specialist this week to find out what the next step is. Are goal is to at least get me to 34 weeks before we deliver thats when I delivered Gillian. Right now I am just about 28 weeks. I will try to keep everyone updated as much as possible.

Leslie

Gillians' labs are finally back to normal. She was getting labs weekly for an entire month. She hasn't had to do that in a while, she wasn't very happy with it. We have been adding about 16oz of extra water to her a day on top of what she drinks herself. That gives her around 32 to 40oz of water a day. That's alot of water for a 4 year old. Expecially when you are trying to get them to drink it on their own.
We went to St. Louis this past Thursday and everthing went great. She is now 31 pounds and 37 1/2inches tall! She's getting to be so big and her feet are still growing like crazy. Her Creatinine is back down to .4 and her BUN is at 17! Her prograf level was a bit low so we uped her dosage we are pretty sure it's just because she has grown so much. We go back to St. Louis on Sept. 10th (I think without looking). On a good note Gillians one year post transplant evaluation will be coming up in December. I thought that we had to have a biopsy and a kidney funtion test. Apparently we only have to do the kidney funtion test and NO BIOPSY! Yay...I am very happy about this because we will have a newborn baby and I really didn't want to try and spend the night in a hospital with him or her. We are just having the function test which will take about 4 hours. They will put and IV in and inject purple stuff into her every half hour or so and somehow find out her kidney funtion! Sounds good to me if it doesn't involve a giant needle and spending the night.
Gillian is going to start school on the 26th! She is so excited to be in Preschool. She didn't get to go last year because she wasnt' completely potty trained and all the germs. I didn't want her around them because we could get that phone call anytime for a kidney and I didn't want her sick. She will be going 3 days a week and just half days, but that is better than nothing. We are going to buy school supply's tomorrow she is excited about picking out her things and a new backpack. Grandpma already bought her one but it isn't going to be big enough. We are going to have to get one as big as her. LOL...It has to be able to hold folders.
Gillian is going to find out if she is going to have a baby brother or sister tomorrow! That is if the baby cooperates tomorrow. She's excited. I kept telling her she was incharge of changing all the poopy diapers and she said no way I will change pee diapers. Then I told her I hope its a boy cause he will pee on her! LOL Then she decided I have to have a baby girl so she wont get peed on. We have 3 months to go until to arrival of the baby and I am more than ready! I haven't been sleeping great.
Other than school starting and labs looking better things are pretty boring. I will try and update tomorrow and let everyone know if it's a boy or girl!

Sorry for the lack of updates. Gillian has been doing well. She had some labs drawn that didn't come back the greatest her creatinine that normally runs at .4 went up to .93 which may not seem like alot to a normal person but to us kidney people its quite a jump. We were worried we would have to pack up our bags and head to St. Louis. Instead we decided to pump her full of water. We have been putting so much extra water in her. Her creatinine went from .9 to .6 which still is high for Gillian but at least it's heading down! Hopefully by her appt on Thursday it will be back normal.

Gillian has still been her normal self and feeling good. She drives her cat and everyone around her crazy. She's always on the go!

She went to visit her cousins this past weekend and had a great time she didn't want to leave. She also went on a camping trip with her grandma and grandpa Irons. She had a good time with that also. Besides that not much new is going on. Pretty boring but thats how we like it!

Gillian has been doing great! We had a dr. visit in St. Louis today. They must have had a slow clinic day because we got right into the lab and right into our appt.

Gillian was a trooper getting her labs drawn today. Usually she is crying today she wasn't to bad.

Although it wasn't a busy day in clinic it was a busy day for Gillian. We had all kinds of visitors. The nutritionist came by and are social worker. When the doctor came in the room be brought a med student, pharmacy student and Lisa the coodinator. Gillian didn't know what to think. To many people for her taste. Dr. Hmiel started talking to her about taking out her G-Tube and she wasn't fond of that idea at all. She went and hid in the corner. I told her he wasn't going to do it today and with a little convincing from the doctor she came out. LOL....I think we may have it taken out at our next appt. That way it's out when she starts school. I don't want to make a teacher deal with something that she shouldn't have to. Plus Gillian has been doing really well with her drinking.

Gillians lab results looked great today. Her BUN was at 18 the lowest in a couple months! :) Her creatinine was at .4 and her prograf level at 6. Everything was perfect! She has grown in height and weight again. She is at 37 inches and 29.3 pounds. Still growing like crazy!

She has been enjoying her kitten. I do most of the time. I know he's just playing but he needs to put the claws and teeth away! :) We are taking him to the vet tomorrow to talk about getting his front paws declawed. I am quite fond of my new furniture and do not want it ruined! Gillian is still taking her swim classes and doing well and she starts ballet back up in September.

As for Gillians brother or sister to be, we still do not know the sex. The baby wouldn't uncross it's legs to let us know. We are going to another ultrasound in August.

I will let you know if anything exciting happens!

Gillian's still doing great. She had lab work done yesterday and we were locked in the lab because of a fire alarm going off on the cardiac floor. You think instead of locking you in they would try to get you out. I'm not sure how that plan came into action.

Gillian's labs came back fine. Her creatinine is still hanging out at .4 and her BUN is at 22. Still needs a little more fluids. It's impossible to tell a 4 year old to drink more though.

She's done with Ballet for the summer but she is still taking her swimming classes. I am trying to get her in the preschool program for next year which isn't as easy as I thought. We moved into the district in March. They did there screenings in Februaury and apparantly didn't leave many slots for extras. I was told there may not be room because they already have a waiting list in August. How do they not save slots for new kids! I know I want her in preschool so we may be paying an out of district fee to send her somewhere.

I had a doctors appt on Tuesday to find out if Gillian was going to have a little sister or brother. Of course the baby would move it's arms and head but would not uncross it's legs for anything. LOL...I will be going back for another ultrasound at 25 weeks which will be in August sometime. Hopefully the baby will uncross it's legs. Everyone keeps telling me it's a girl because of the legs being crossed. Gillian did the same thing. But I guess we will find out in time!

Gillian is loving her new kitten "blue". He's finally adjusted to life in our house. I feel bad for him at times. Gillian drives him nuts. He hardy ever gets time to himself. When she is gone or the whole family is he passes out in his bed and sleeps for hours. LOL Mike has been incharge of cat litter because Gillian and I have great excuses of not being able to. :) Lucky Daddy! I don't think he minds. He loves the cat as much as Gillian.

We go back to St. Louis in a couple weeks. I will let you know how it goes.