Well we made it home from Gillians appt. it always seems like such a long day. Gillian is passed out on the chair she has such a long day.

We got to St. Louis around 12:15 and she had her labs drawn around 1 or so. The lab was pretty busy today.

When the doctor came in he was concerned about her weight. That has always been a concern. She is almost 31/2 and weighs 22 pounds. He talked about growth hormones which would be a shot 6 days a week. Don't forget that she gets an epo shot twice a week. That would make 8 shots a week. As you can imagine I am not to keen on this idea. I have also heard that growth shots are painful.

We are not starting them because her PTH is way to high and the shots can make it worse. Her PTH levels are 3000 and should be 17. They suggested more calcium carbonate and they mentioned that after transplant they may have to remove the parthyroid gland. I didn't know that this was possible, but all this PTH, calcium and vit D stuff confuses me.

We had to up her dosage on her Bicitra to 6ml four times a day. Her pottasium was actually normal for once it was 4.2. Her BUN was 84 and her Creat. was 3.8. Which is the lowest it has been in months but that really doesn't mean much.

They have decided to try giving her some pediasure to try and gain some more weight and add extra caleries. I guess we will see, she is pretty picky. She tried some stawberry on the way home and she said she liked it so maybe we can replace water with pediasure.

We talked to the Dialysis DR., she was the doc in the office today. She said she really didn't have anything to add we have been doing everything we can. She just said we need a kidney. They are going to discuss her at the transplant meeting on Thursday and try to find out some more about Medicare. I am pretty sure that she has to be on dialysis to qaulify, but they are going to check into it. If we can get her on medicare they will pay for a living donor. I am not getting my hopes up though. I don't think we will get on until after she is transplanted.

So pretty much the appt. was the same as usual. We will go back in January if we don't get a kidney before then. :)

No it's not for Gillian it's for another COTA patient. She isn't even a Kidney patient. I read up on most of the little kids that need help and I came across Emerson White. She recieved a multi-visceral transplant in June and today she needs everyone she can get to pray for her. Please say a prayer for her and her family and check out her website.

www.cotaforemersonw.com

I thought I would Blog a little since I haven't in a while. Gillian is still doing pretty good. She has been eating, but not really gaining any weight. I don't know what it has been lately but she has been pushing me. I think she has figured what botheres me. I don't know or maybe she is just lonely not having any other kids to play with. Working in a pharmacy I know there are all kinds of bugs going around right now. Everyone knows I am a germaphobe. I think Gillian is a little sick of being stuck in the house. I am just worried about taking her out and getting sick. For my luck that would be the day her phone call for a kidney comes.

Not much is really new. Gillian had her flu shot on Tuesday. She did really well with that. I got a case of food poisoning that has been kicking my butt. It lasted a week and I am still feeling a bit yucky.

My mom and I took Gillian and Katie to the pumkin patch in Arthur. They had a good time. Gillian loved it because she was able to run free. They have things like goats and chickens some rabbits out there so that kept her occupied. She aslo went through a straw maze she had fun with that trying to find aunt katie. When we left the pumkin patch we went to an outlet mall and Gillian got a new pair of jeans. Who would have thought that my almost 3 1/2 year old daughter would only weigh 22 pounds and wear a size 18 months. Its crazy!

We have an appt in St. Louis on this coming Tuesday I wll blog again and let everyone know how it goes. I will try and get some new pictures up too. I am not sure how so I will send them to my webmaster!

No news is good news.

Gillian has been feeling better. The vomiting has stopped and she has started eating more again. I am thinking she just has a stomach bug. Now that we have gotten rid of that Mike and I are having some sinus problems and hoping Gillian stays well. We have a doctors appointment in October, please pray we get her new kidney before that! Also, pray for all the other kids working with Cota and that there kidneys continue working for them and pray for those who have not yet recieved there kidneys.

So, I finally gave in an called the doctors in St. Louis. We discussed what has been going on with Gillian and came up with a couple things.

We are going to give her some loratadine and benadryl switching them every few days. We are also going to start her back on pepcid for heartburn and gas problems. All of us also discussed her digestion. We have decided that she doesn't digest very fast at all. I was putting just 20cc in her button every half an hour and about 3 hours in she ended up throwing up. I am going to start trying 20cc every half hour for an hour then give her an hour break. This is why we couldn't use the feeding pump her digestion was just to slow. Her stomach would get rock hard in the middle of the night and she would scream in pain.

We are going to try these things and see if they make any difference. We are going to continue the monthly labs. I am going to be doing weight checks on her once a week. I do have to admit she has been doing better the last couple of days. Lest all knock on wood and hope that continues. The doctor said he doesn't want to have to do dialysis but if he has to he will until she gets her kidney. Of course we are still holding off on that idea for awhile. Our next appt. in St. Louis is on Oct. 14. We were also told that Gillian is able to recieve and O blood type kidney but they are not excepting them only the B type just to be on the safe side I guess.

Gillian had a check up with her pediatrician yesterday it went well. They checked her eyes. They had an eye chart with pictures which was pretty neat. She was not in the mood to do the hearing test. I am not worried about that though I know her hearing is fine. Her blood pressure was really good it was 82. Usually it is around 100. All in all except for her size they were happy with her and her developemental skills.

Keep praying for a new kidney for Gillian!

Everyone who knows Mike and I know we are not the most religous couple. That does not mean that we don't believe. I do believe that Gillian will get her kidney and I have prayed for one every night for the last 9 months. I just wanted to let everyone else to please pray for a kidney for Gillian.

I am starting to get a little worried. Besides the monthly labs, Gillian has not been eating well at all. I know she isn't sick. She hasn't wanted any formula for 2 weeks now. I am lucky 2 get 8ounces down her a day. As most of you know that is where she gets all of her caleries from. I have tried everything. I have put it in through her button and she just throws it up. Even if she takes to much by mouth she throws it up. She is keeping down everything else water, food and whatever else she desides to drink or eat. It's so frustrating because I don't want her to lose weight and I am afraid she already has. She can't even keep her size 18month pants up that she wore last year. I am scared to call St. Louis because I don't want them to unlist her!

I am trying to keep positive but waiting 9 months has gotten to me. I am watching all these other kids get there kidneys in 1 day to 1 month on the list and I am happy for them, but why can't we get the kidney we need?

Everyone please just say an extra prayer for Gillian tonight. She needs to get this kidney! I DONOT want to have to put her on dialysis. I know she would be absolutley miserable and I don't know if I can handle it!

Just a quick update!

I got a phone call from St. Louis the doctors have decided to start labs on her monthly. She was only getting them every 3 months. I am trying to keep positive although I don't take it as a good sign. We will be having lab work done on Friday and then again in the middle of October before our trip down to St. Louis for her appt.

Gillian has been doing well. She threw up yesterday and was running a low grade fever. Nothing to worry about. Today she had 3 loose stools and has been fine ever since. She still hasn't been taking much formula since the last time I posted. I hope she isn't losing weight.

Tonight she got to play with some kids her age. Mike and I had some friends over and they brought there 4 kids. She had a blast, she doesn't get to play with kids her own age very often. When it was time for them to leave she had a huge fit. Kicking, screaming and even hitting. She has calmed down now, she is watching Tom and Jerry on TV. She just told me she was finally ready to eat her dinner, so I will end this blog for now.

Please pray for a new Kidney for Gillian. I think it's getting to the point where we really need it!

Gillian had a great time on vacation. We went to St. Louis last Monday and Tuesday. On Monday we went to the Zoo, of course her favorite part was the penguins. She made an elephant at the build a bear shop that she named beary and put in a pink penguin shirt. After the zoo we went and checked into our lodge. We went swimming for a while she had a blast except it wasn't that warm so her teeth were chattering, but she refused to get out. We went down to the Spaghetti factory to have dinner and then around 8pm she went to just see the ARCH. She was amazed at how big it actually was. She was about to fall on her butt looking at it.

On Tuesday we went to the galleria, then to the science center. They have a huge dinosour display that she was scared of. We ended up paying to let her play in the discovery room for 45 minutes. It was really the only thing there she liked. It was pretty much a room full of toys. When we were done there we went to union station and hard rock cafe. Then we finally went home. It was just 2 days, but a long 2 days.

As far as Gillian she has been doing ok. She hasn't been drinking as much formula as I would like. She wants water all the time. I guess that's not a bad thing she just isn't getting any calories from that. She has been eating more food, but not enough to make up for the formula she is missing out on. I have to take her to get a lab draw tomorrow. I just her monthly crossmatching sample. I should have done it on Friday fogetting about the holiday. I hope the hospital doesn't get to upset. Its my first time it was late in 9 months. Yes we have now been on the waiting list for a total of 9 months.

One last thing. I told you about a friend of mine whos 10 year old son had a transplant. Say an extra prayer for him. He ended up getting pnemonia and was put on a ventilater. I am hopping is off and doing better now!

Gillian is still doing well. Just wanted to give a little update. Mike starts his vacation tomorrow and we decided that we are going to St. Louis. We are leaving Monday morning and we will spend the day at the zoo and then swim at the lodge. Then we are going to take her out the the Old Spagetti Factory. She loves her noodles, so we though that would be a great place for her. Then on Tuesday we are going to the science center and maybe the galleria. We will head home that night. Not really a long vacation but a needed one.

Also a friend of mine from high school son just had a kidney transplant in St. Louis at Cardinal Glennon. He was listed on the 30th of July and got a Kidney on the 31st. How awesome is that! He is 10 years old and they have always known it was going to happen. They just thought it would happen a little later in life. Just say an extra prayer for him as he has one more surgery to go through to fix a problem. They are ready to come back home after almost a month in the hospital.

I will let everyone know how Gillian's vacation was.

Gillian has still been hanging in there. Right now she has some allergy problems. I decided to open up the house this week and turn off the air. Her nose isn't liking that. She has been a little grumpy because I have been giving her benadryl. I doens't put her to sleep anymore it just makes her grumpy. Unfortunatly it's the only thing I can give her with her kidneys not working.

I called Lisa gillian's transplant coord. the other day to find out if Gillian has had any more offers for a kidney. I guess she had another one at the end of June that also didn't work out. So since January of 08' she has had 3 offers that haven't worked out. It's a bummer but I guess I do want the best kidney possible for her.

We decided to make a trip up to see Gillians great grandma and grandma. They live near Quincy Illinois. I was quite nervous for some reason I just feel better being home. I want to be here when I get that call so I can grab things at the last second.

I am happy I took her though she had a great time. She got to go swimming in cousin Calebs swimming pool. I think that made her summer it was the first time she got to go. She also enjoyed seeing grandma Lois. Gillian followed her around the house like a second shadow. All and all it was worth the trip and I am just a paranoid mother.

Mike starts a vacation on the 24th I think. We are planning on going to St. Louis of all places. Can't go to far from there so might as well vacation there. We are going to spend one day at the zoo and maybe the next day we will go to the science museum or something. They have a lot of hands on things so I think Gillian will have fun. It will be the first time we have ever gone somewhere by ourselves as a family. Usually we go visit family or go somewhere with family. It's long over due to do something on our own.

Keep praying for a kidney for Gillian!