Sunday, October 28, 2007

Fun Fair

It was fun fair night at the girl's school Friday night. Unlimited games, face painting, a big bouncy, a maze and bake sale. They had a blast. But of course, once again, my camera lost battery power. I don't understand why my camera sucks up this much battery, it's not even a very good one! I was able to take a picture of the girl's faces when we got home with their little 1.2 mega pixel cameras! The guy that was doing the face painting used to paint faces for Cats! He did it, it was worth the 40 minute line for sure! Mary got a Tiger face and Anna got a butterfly. Of course Anna's makeup was just about wiped off by the time we came home, but Mary was very careful about her makeup.

Alex was not feeling well at the fair, and was not up for face painting at all! She did, however, stand in line like a very good two year old. That is not in her character though. I expected to have to chase her around, I told the girls not to follow me if I took off. Poor baby, when we got home she felt warm. I took her temperature and it was 102.2! She continued to have afever through the night, and all day Saturday. Today she is fine, she must have just been fighting off a bug.

*I started this post Sunday afternoon, it is now early Monday morning*

This morning I dropped my Mother in law off for surgery. She is having a biopsy done on a lump that is directly under her left breast. The surgeon we saw last Wednesday wanted to get it out and biopsied as soon as possible. I did not see this coming. She just had a PET scan done last April that found a mass in the middle of her chest. It was biopsied and found to be benign. It was such a relief. But, it's only been a few months since then, and she is going through another biopsy. The surgeon said that he really didn't like the feel of this lump, and it needed be taken care of right away. To see the surgeon on a Wednesday, and have surgery scheduled only 5 days later is scary, but I am so grateful that he is on top of it. Please say a prayer. She should be able to go home later this afternoon, and results won't come back until this Wednesday afternoon, or early Thursday. Depending on the results of this biopsy, we might hold off on the study I talked about in my last post.

Wednesday, October 24, 2007

Medical Studies........

I got a phone call yesterday from one of Anna's liver doctors about a couple of studies she wanted us to participate in. The first study is a tolerance study. It's titled, "Immunosuppresion Withdrawal for Pediatric Living Donor Transplant Patients". This study seeks to understand if it is possible to slowly reduce and then completely stop your child's anti rejection medicine safely and find out if there are blood tests that can help transplant doctors in the future identify transplant patients who may be taken off of their anti-rejection medicines without developing rejection."

This is a study that was brought to our attention a couple years back. I was all for it when we first started discussing it, but since they wanted Anna to be on her once a day dose of Prograf for at least a year (which at the time, we were just starting) we decided that we would wait for her next appointment, next year, to really talk about it. Well, when Anna had transplant clinic last March it was indeed brought up again. I wanted to say yes right then and there, but I didn't have Jason with me and I wanted to discuss it with him first. We were given the information on the study when we left. After reading the information the cons outweighed the pros. We read things in this study information that scared us, and we had many more questions to ask. The main thing that worried us was the possibility of rejection. Anna has never had to deal with rejection, so why put her in harms way now? Also, this would require Anna to have a biopsy before the study starts. After that, Anna's medication will be slightly lowered every two weeks along with biweekly labs. Once she is totally weaned off of her medication, she would continue to have biweekly labs for 6 months, then monthly labs for 3 years! I wondered how Anna would deal with this. This was my dilemma, if Anna was having trouble taking her medication, or having some of the side effects from it, or if she was constantly getting sick (because this medication suppresses her immune system), or even problems with her kidneys from being on it for so long, this decision would be easier for us. We decided to hold off, until Anna's next appointment so that we could discuss this further with Anna'a doctors.

So, back to my phone call yesterday. Imagine my surprise when, out of the blue, Anna's liver doctor calls me. Of course my first thought was that there was something wrong with Anna's labs. But since it has been over a month since she last had them done (she gets labs every 3 months), and I was already told they were fine....anyway, the liver nurse is usually the person that calls! She has been meaning to call me for some time now, but she is a busy lady. She didn't waste anytime (she is a very busy woman you know)! We discussed my concerns and she answered my questions. She has always had a way of making me comfortable about Anna's care. She reassured me that the risk of rejection in so small, and since she will be monitored very closely, if there is any rejection it would be treated easily. We can withdrawal from the study at anytime, and she wouldn't blink an eye. She thinks that Anna would be one of the best candidates for this study. In her words, "Anna is a superstar! If anyone can do this, it is her." Then my next concern is the biopsy, but the doctor reminded me that Anna will be due in March again for a biopsy anyway. I forgot to ask if this would require additional visits to transplant clinic, and that is something I will e-mail her about today, along with a couple other small questions I failed to remember to ask. Usually, I would have a list, but I never expected her to call me! We also discussed this with Anna last night. She is totally fine with it. Jason did a great job at explaining things and answering her questions about it. Her only concern is missing school. Since she is in afternoon kindergarten, we would gets labs done either in the morning, or on Saturdays. Her biopsy would probably have to be done on a week day, and yes she would miss school that day. Of course, in the case of rejection, Anna would miss a few days if she has to be treated inpatient for that. It depends on the severity of the rejection, and again the risk is there, but it is minimal. Anna has always been fine with blood draws, she actually sits there with a smile on her face. She even thanks them when they're done. Actually, she has always been fine with everything medical in her life. She has done this stuff since day one.

Our decision, if you haven't guessed it already, is yes! It is always something that has interested us, something we always wanted to do. How cool would it be that Anna not have to take any medication, at all, after all of this! After all we have been through. When Anna was first diagnosed I knew our lives would never be normal again. I worried about Anna's quality of life. Now, six years later, Anna has a farely "normal life" Also, if people never participated in studies like these, where would we all be right now? I think of the first person that gave the ok to do the Kasai procedure on their baby. This procedure gave Anna much needed time to grow before she needed her new liver. In some cases, the child does well for years without a transplant. I went on to think of the first transplant, the first split liver transplant, the first pediatric liver transplant.....the first living liver donation transplant! I don't know if Anna would be here if it weren't for living donation!

Since I have been torn for, I guess about two year now, it seems a little strange that we are going for it now. It was the talk with Dr. Alonso that has pushed me. It's not like I was pressured into this at all. I just think that we are at a point in our lives that we are just ok with it. Both Jason and I have that feeling deep down inside, that Anna will do fine. Be fine.

I will update when I know what the plane is. Wish us LUCK!!!!!!

Saturday, October 20, 2007

Early Holloween!

I know I should wait until Halloween to post pictures of the girls in their costumes, but I couldn't wait! They look so darned cute! There was a Halloween party at the park district building here in town last night. I wasn't going to go, but I was convinced by a friend who was taking her kids too. Since I didn't have Anna's snow white wig yet, I had to run to the Disney Store to pick one up. I was pleasantly surprised to see that all of their Halloween stuff was 40-50% off! So, I got a wig for only $6.50! Then I had to try to get the kids ready, and since I wasn't planning on going in the first place, I was rushed and flustered, but I figured it's better to get more than one wear out of the costumes.. It turned out that I had all three of my girls ready before my friend Michelle had her two ready. They both had pirate costumes on, but they didn't have to get their hair done. Here is a picture of all of them getting ready to go to the party.

Mary was Elizabeth Swan from Pirates of the Caribbean, Anna was snow white, Alex was a pretty ballerina (Anna's old recital costume), and both Hunter and Maya were pirates.

They had a blast. There were games, trick or treating, a costume contest, and a magic show! They had many different categories for the costume judging. I thought for sure Alex would win in the prettiest baby, or prettiest costume categories. I know she is mine, and it's my Job to think this, but compared to all the other babies, she was by far the prettiest, the cutest, and her hair wasn't all over the place. I worked so hard on keeping it that perfect bun. It's not like I am one of those pageant moms, but I really thought she should have won that cheap plastic trophy! Actually, all three of mine should have one! Anna was pissed, even though there were so many snow whites, nobody else had the wig, or the red lipstick! HA HA! Same with Mary, there were so many other pirates, but she had the best, and she was the only Elizabeth Swan Pirate!

Thursday, October 18, 2007

Happy Birthday to me!

Well, today is my Birthday! Happy Birthday to me!!!

So, guess what I got to do today? I got to wake up at 6:00 in the morning to get ready to drive into the city for an appointment at Children's for Anna to get filling number 7 and 8. I don't think I have had that many cavities in my life time ( I'm not giving out my age for anybody who doesn't already know)! Her appointment was at 9:00 in the morning, and it took two hours to drive through traffic! If I was smarter I guess I would try to find a local area pediatric dentist to take care of my 6 year old's very weak teeth. I just really trust children's with all of Anna's care. If anything were to happen we are right near the main hospital, and they have her medical charts and everything. They are so good at this dental office, we have never had a problem. They just know how to deal with kids, and they are used to taking care of kids with medical problems. You can't get an appointment unless the child is already a patient at the hospital, or you are a sibling of that child.

Anyway, it still doesn't stop me from being totally fed up with Chicago traffic, and trying to wake a sleeping child who really values her sleep (just like mommy)! We did however make it out of the house on time to stop for coffee and hot cocoa! We made it there on time, we had the first appointment, and Anna was as good as gold, again, as always! That is one part that makes it so much easier on me, and the dentist. She even got three stickers, a toy, and a little book because the dentist and his assistant were so grateful to not have to fight with her. That's my girl! Apart from the morning traffic, everything ran smoothly!


Since Anna couldn't come to visit baby Noah last Saturday, we stopped by Jenny's house on the way home. Anna was in love, just as Mary and I were when we visited him in the hospital! She couldn't get enough of him, it was sweet. I just had to make sure to sit close to her while she held him because she was just a little on the rough side.

She wants a baby borther now!

Saturday, October 13, 2007

Baby Pictures!!!!!!!!!!!!!!

For those of you who didn't get the chance to read my other posts:

My best friend Jenny, had a baby today. He was named Noah Gregory, and he weighs 7 pounds 11 ounces, and is 20 inches long. Mary and I were able to visit with Baby, Jenny, and proud Daddy today. Mommy, and baby are doing well. Daddy is as proud as can be, and I know Brandon was excited that his baby brother is finally here. Nine months is a long time to wait! It was a wonderful experience, as it has been nine years since Jenny's son Brandon was born. Jenny and I have known each other since high school, and have grown closer over the years. Mary and Brandon have been friends since they were babies, and will hopefully always know each other. Jenny is the kind of friend who is always there for you, and never expects anything in return. My girls love her, I love her, and I am so proud to call her my friend. Congratulations Jenny, Brandon, and Mike! Noah is so beautiful, and I can't wait to watch him grow up!

*I do realize that my camera's date is so wrong, probably due to a certain 2 year old that we all know....*019



He is here!!!!!

Noah Gregory was born at 2:10am on Saturday October 13, 2007. He weighs in at 7 lbs. 11oz. and is 20 in. long.

I've hear he is beautiful, and looks just like Jenny!

Mary and I are going to visit both babies this afternoon! I still have to go pick up my camera, but I promise pictures soon!

Yay, baby day!!!!!!

(P.S. If you happened to miss what is going on, read the two previous posts.)

Friday, October 12, 2007

One down, one to go!!!!!!!

My niece made it safely into the world this morning around 10:00 am. Christina Elisabeth was born by c-section. My brother and his wife are now holding, and loving on their 6 pound, 5 oz baby girl as we speak. I will go visit tomorrow morning, hopefully with my camera so that I have a picture to post soon.

Jenny is still waiting. She went in at 7:00 this morning to be induced. She has been on pitocin for hours now, but hasn't really dialated much. She was in labor with her first for something like 36 hours, but that was nine years ago. Lets pray that it won't be this long her second time around. I haven't spoke with her directly, I am waiting on updates through her mom because I don't want to bother her while she is contracting. I know I didn't want to be on the phone much while I was in labor. I think Jenny's mom said the contractions are 3 minutes apart now. I'm sure I won't update until she has had the baby. Hopefully I can visit them tomorrow and take a picture of a healthy baby boy, to post soon.

Tuesday, October 09, 2007


For what??????

Not for my baby to be born ( and before anyone starts to question it, I'M not pregnant). But, I do know how terrible those nine months can be when all you want to do is meet your child.

My best friend was due on the 4th of this month with her second boy. Now she is five days past her due date. I call her daily (sorry Jenny) to check on her. I know she is tired of getting phone calls from everyone (including me) asking her if she had the baby yet, I remember those calls. It's like you wonder, don't they think I'm anxious too!!!!!!!! I am almost as excited as Jenny is, I swear I must be, I have to be, it's on my mind all the time! This baby will be just like a nephew to me (as is her older son Brandon). Anyway, Jenny went to the doctor today and she will be induced on Friday the 12th! Hopefully this baby won't give her a hard time, and come out nice and fast!

So, the 12th is a good day for baby's to be born I guess! My sister in law is scheduled for a c-section that day too! This one biologically my niece ;)! Her name will be Christina Elizabeth (or Elisabeth?). My middle name, Elisabeth, is spelled with an S, if you didn't notice. And no, my brother is not naming her after me. But...well...sort of I guess. My Mom's middle name is Elisabeth, as was my Grandma's middle name, and my little sister Deborah. So, it's a family name. I'm just not sure which way it will be spelled and I guess it would depend on the way it is spelled.

Aren't I the lucky one! I get two babies born in one day, assuming they both hold on that long! The best part is, it's not me this time! Sure, I love being pregnant, I love new born babies, but I've been there done that. Now I get to enjoy being on the other side, you know?

So, to get along with the post, since it's on the topic of babies, I will include a baby picture of Alex. Just because I don't have a scanner, or a camera to take a picture of a picture of Anna and Mary as newborns ( I left it at Jason's cousins house last weekend). So, it's just Alex because that's when I got my digital camera. If I get permission, I will post pictures of my new nephew, and niece. I'M SO EXCITED!!!!!!!!!!!!!!!


Tuesday, October 02, 2007

Proud Mommy stuff!

Anna's school pictures came out pretty good! Somehow we only received Anna's pictures and not Mary's. Actually, the photo lab messed up more than loosing Mary's pictures. Anna's background was just supposed to be basic grey, not green, but actually I don't mind the green. I could send them back and have her take retakes, but i don't want to do that just because the background isn't the right color. With my luck her eyes would be closed in the pictures they takd on retake day. I don't know what's going on with Mary's pictures, she might have to go on retake day. Anyway, here is Anna's picture.


(click to enlarge)

But, I do have a proud Mommy thing to use for Mary. Last year in third grade Mary took the ISAT (Illinois Achievement Test) tests for the first time. Actually, she missed the whole week of testing because she was sick with the flu that whole week. She was able to do makeups, and she was so sick with nervousness about sitting in a room on her own and not doing them with everyone else, that I thought for sure she wouldn't do her best. Turns out, I was wrong. Mary exceeds Standards in both Reading and Mathematics. In National comparisons, in reading Mary did as well or better than 79% of students national, and in Mathematics, 88%!

And Alex, I'm always proud of my Alexandria Rose. She just doesn't get school pictures or test results from school. She sure is growing up though. Although I am still waiting for her to potty train, she is so supper smart. I know that she can use the potty because she stayed dry for two days when we first started. She just chooses not to use the potty. She can sing her whole alphabet, has a huge vocabulary (sometimes too huge) and can sure play dress up, and dresses herself when she plays. She can count up to 15, sometimes missing a number or two, and up to ten in Spanish, Thanks Dora!