Lazy Summer Days

Early summer morning

It's been a while since I updated. We have all been enjoying our summer so far. It's been nice to just be able to relax in the morning without having to get all the girls ready right away for school. Our days usually consist of lazing around till about 10:00am. After that we will sometimes go to the pool, or to the park, or just outside to play out in the yard. Mary has been in baseball and that's usually three times a week, but it's almost over. Today is the last game of the season, and then comes play offs. Our coach is confident that we will be in the playoffs, so maybe a few more games after today. It's going to be miserable out there today, I think we'll need to stay in for the day, until baseball. It's supposed to hit 96 degrees with high humidity today, OUCH! I don't envy Mary having to go out and play in this. The little ones are staying with my neighbor tonight, so they'll be fine, but poor Mary!

Yesterday we had to drive down to Children's in the morning for labs. This will make the fourth time in two weeks. Anna has been going often because of the weaning of her immune suppressant medicine It has been fine for a couple months, but early last week when we went the level came back really low, so they had to up the dose and draw again in a few days. Then that level came back low again, so they upped the dose, and draw again. Now she is on double what she was on before, because when they called me yesterday her level was still low, and they had to increase again. Hopefully this will be it, but we do have to go back again next week for another blood draw. Keep your fingers crossed that this will be it. I was a little worried because we haven't had to change her dose in year, we just took her bedtime dose away for the weaning process, and then the level of her med in her blood was supposed to be half that it was before we took that one dose away. I hope I'm making sense here. All of her liver numbers are perfect, so it's encouraging that with the level of immune supressants in her blood being so low, everything is still working as it should, no rejection! I think she would be able to handle being off of it all together, but I'm no doctor. Anyway, not fun, but Anna actually doesn't mind. She loves going to children's, she likes the attention she gets form everyone, the McDonald's, the lobby, and best of all the gift shop (she calls it the candy shop). Last week when we went to Childrens, we went to visit a liver friend, Natalie, that is in the hospital with complications from her transplant. Anna wanted to get her something from the gift shop, and headed right to the candy section for her. I usually only let Anna get one piece of candy when we go because otherwise we would have too many stuffed animals, and I would be broke! She then spotted a pink poodle that is just like one that she has (from the same gift shop) for Natalie. I was shocked to see that she didn't ask to get something for herself, and she wasn't upset that we were getting something for someone else, and not for her. What a big girl!

We are all also looking forward to Anna's Make a wish trip to Disney World this August! Anna tells everyone about it. Everyday she has been asking "how long until we go to Disney World?" Poor thing doesn't really have a good concept of time, when I tell her two more months, she has no idea what I'm talking about. So, what I did was make a countdown chain for her. We got some colored construction paper and cut out strips of paper, and staple them to resemble a chain link, then linked them all together. As the base I made a Mickey head to represent the day off the trip. Each day she rips off one link. Clever girl, the first day she had a brilliant idea, she would rip them all off, then we would get to go right away! I explained to her that that wouldn't do her any good, but each day that she rips off a chain it gets closer to the day of the trip. She is already excited that the chain is getting smaller, and I am trying to keep these girls busy this summer so the time might go by faster for them. Or, maybe I should just let them keep me busy, I might be just as excited and anxious as they are.

Anna's dance recital

My beautiful Ballerina

The whole class

Dancing the dance
I actually took these pictures at Anna's dress rehearsal because they won't let you video tape or take pictures at the actual recital because, "it's dangerous for the dancers." I know the real reason though, they tape it and take professional pictures for you, but it costs an arm and a leg. What a scam, good way to make even more money for themselves. Of course I buy them anyway. I am very thankful that my good friend Lorraine (the one that so many amazing pictures for me of the girls), that she let me borrow her very expensive professional camera so that I can take these pictures, then she burned them on a disc for me. Thanks Lorraine, your too good to me!
So, the dress rehearsal went very well. I was afraid Anna would freak out and not want to get up on the stage, but she proved me wrong! She went right up there and danced her little hart out. I wanted to cry, and I'm sure that tomorrow at the recital I will. The song that they dance to is "Oh what a miracle am I." I wish I knew how to upload that song on a blog for everyone to hear, it's so precious, and appropriate to me, for it to be the song for Anna's class to dance to. I was so proud of her, she did very well. Anna is known to be the class clown in dance class always goofing off and getting others in trouble for following in her footsteps. I thought she was going to goof around on stage. I wasn't even sure if she really knew the routine. I guess I don't give her enough credit, no matter how much I think she's not paying attention she really is. Sorry Anna!

Anna's wish

Anna's wish granter's from the Make a wish foundation of Illinois came over yesterday to ask Anna what her wish would be. I few weeks before they came they gave Anna a wish packet to fill out. In it had four questions for her, where would you want to go (Anna said Disney World), who would you like to be (Anna said a princess), what would you like to have (Anna said a Cinderella dress), and who would you like to meet (Anna said Cinderella). I wish I had a scanner so I could show the pictures she drew in her wish packet. For Disney World Anna drew a picture of Cinderella's castle with Cinderella waiting for her, the Dumbo ride, a spider ride (?), and Peter Pan's ship. On the picture of herself she drew her scar on her belly, too cute! Can you guess what her wish was? They thought it was pretty clear that a Disney World vacation would be the perfect wish for her. Then they started to tell us about the wish, and what to expect. I limo will pick us up at our house. They made it clear that the trip is ALL expense paid, that means food, rental car, spending money, ect. They also said they would try to get her a character breakfast with Cinderella! They will get back to us with a date, we asked for it to be in late July, or early August. They said they will try to get us into Give Kids The World resort that is especially for kids that come through the make a wish foundation, but since we're asking to go so soon they might not have space available. That is because 75% of wish kids ask to go to Disney world, but if they can't get us in there they will still give us something nice. The reason we are asking to go so soon is because we don't want to go during the school year since this will be Anna's first year of preschool, and we don't really have the money to do anything fun this summer so we hope that this will make the girl's summer great! I will update when we have a date for the wish, they are not sure when they will get back to us, but they said when they get things going they will let us know. Anna is so excited, we all are. She deserves this, she has been through so much, more than most Adults go though their entire lives. I can't wait to post some pictures of her with big smiles at her wish trip!

Anna's Cousins

We went to my brother Tim's house over Memorial Day weekend. My sisters Tammy and Wendy were there also. This is a picture of just a handful of Anna's cousins. (form left to right)Joey, Krystal, Randy, Anna, Mary, and Cheryl. Anna is holding my niece Hannah, and Mary is holding Alexandria. We sure don't get together as often as we should, but when we do, watch out! It was loud and crazy, but the kids all had a great time playing, and it was nice to be able to hang out with my siblings! The babies were passed around all day, wich was nice for me and my sister in law. I didn't have to worry about getting the baby ready when we decided to take the kiddies to the park, how wierd. The girls were pooped out on the way home, they passed out in the back seats. Of course when we got home they perked right up and went right to playing outside while I fired up the grill for dinner (Jason said he wanted to cook out, I love it when I don't have to cook, and he does it so well) Anyway, just wanted to share!

My Baby is no Baby

I can't believe how much Anna has grown up in the past couple of months. First off she became a big sister! When I brought Alexandria home form the hospital I realized how very big and grown up Anna is. She looked HUGE!!!! Then she got her first birthday party invitation from a friend at Ballet. It's not like she's never been to a birthday party before but they're always from family, or friends of the family addressed to all of us. This one came in the mail in her name, just for her, and she was just ecstatic. You could tell she felt "cool", like her big sister Mary who in the past couple weeks has received two invites from friends. This couldn't have come in at a better time, she didn't have to feel left out again. On the day of the party I thought for sure Anna would be super excited, but she played cool. I would ask her if she was excited about the party and she would be so nonchalant about it, like it was no big deal, like she does it everyday. When I dropped her off I was the one hesitant about it. I thought she would be clingy and maybe not even want to stay, but it was me who was clingy and not wanting to leave her there. I was finally convinced by the little girl's mother that Anna is fine, and will remain fine, and that I should leave. Of course when I finally left I cried. I'm not sure if it was because I was happy that she is growing and HEALTHY, or because I felt like I was loosing my baby (aka, big girl). So I pick her up from the party and ask her if it was fun and what did she do, and she is still cool about the whole thing. She just sounded annoyed that I kept on asking her when clearly she didn't want to talk to me about it. It wasn't until after we got home and she was talking to Mary about the party, that I knew she actually had a blast! They sounded so cute talking to each other like they were best friends!

Also last week Anna got her costume for her dance recital, and she looks just darling in it! It's pink (Anna' favorite color) with sequence or "sprinkles" as Anna would say. They are dancing to a song called "Oh What a Miracle Am I". Is that just perfect for her, or what? She has got the dance down, and she she knows what to do. She told us that she is ready to dance on stage, but I wonder if when the time comes will she be out there with the rest of the dancers from her class? I hope so, Jason thinks she'll be just fine. But without me? (sob)

I am so glad, and thankful to God, that Anna has the chance to go to birthday parties, be in a dance recital, and just be able to be a kid without any worries. I have to let her grow up. She is not a babie anymore, but she will always be my baby.

My "Big Girl"

Weaning doing great!!!!!

Well, it's been a little over two weeks since we started to wean Anna down on her immunosupressants and it's going very well. We had a little bit of a scare when after one week, Anna woke up in the morning and wasn't acting herself. She is usually real chipper, ready to start her day and wants to eat breakfast right away. She woke up and just wanted to lay down on the couch and watch T.V. No breakfast or anything, complaining of a tummy ache and just wanted to sleep, and did so to the point that I couldn't get her to wake up and stay up. I called her docs and they didn't seem too concerned since she didn't have any other syptoms. Of course I was worried to death, so they went ahead and called in some lab orders to our local hospital. Turned out that right before we left Anna used the bathroom and had the runs, probably the problem. After that she was fine and back to herself, but of course we went ahead and did labs anyway. Thank God they came back perfect, and the worry was gone. We went ahead and repeated labs the other day, and everything still looks great! Now we don't have to go back for another month unless something comes up.

Normally I wouldn't have been worried, but since we just started to wean her Prograf I was extreamly nervous and still am. On the up side it looks like Anna's exzema is clearing up! I think she had it so bad because of being on Prograf, I have noticed a lot of kids post transplant have this skin condition. It seems now that since she is on a lower dose her skin looks a lot better, and less itchy! Anna has also developed a cold and cough, but with her labs looking so good, nobody is worried (well maybe I am a little, I can't help it!)

We've started the weaning process!

A little while back I posted about the possibilty of Weaning Immunosupresents. We were supposed to get back to Dr. Alonso a few weeks ago, but with the baby coming sooner than we expected we put it off for a little while. We have decided to go ahead with it. They told me to go ahead and start by taking away Anna's evening dose of Prograf, and go for labs in two weeks. YIKES! They made it sound so easy, but I guess it is. It freaks me out a little that we will go for a whole two weeks without checking liver function and Prograf level. Trust me, I am watching Anna like a hawk, but so far so good! So starting last week we took away her evening dose of Prograf all together and we go for labs in another week. I know it will all be just fine, it will work out to Anna's benifit. Please keep Anna in your Prayers.

Alexandria Rose

Here is the happy, bigger family! 

Alexandria Rose was born April 5th, 2005 at 3:45 pm! She came four weeks early, weighing in at a healthy 6 pounds 0 ounces 18 inches long, and is doing very well. Anna and Mary couldn't be more excited about the arrival. They are both being little mommy's, wanting to do everything for her (except the diaper changing of course). So far it's been great, it's feels as though she has always been here with us. Jason and I are so very grateful to have three beautiful and healthy, little girls!

Anna will get a wish!

I can't believe how fast this all happened. I went on the Make a Wish website last week and referred Anna. They called me back Monday and asked me a bunch of questions. They said they would have to fax a wish form to Anna's liver docs at childrens and wait for their response, and said that it was up to them to if Anna would qualify. I then got a call back yesterday from make a wish, and they let me know that Anna had been qualified! Now we have to wait for her wish granters to call and set up a day for them to come over and talk with Anna. I don't know how long that will take, but the process is already going a lot faster than I had anticipated.
Anna is pretty excited, but I don't think she really knows what all of this means. We have already asked her what she would wish for and she told us she would want to go to Disney world! She has heard from a friend in ballet all about Disney world, and has been talking about wanting to go there. I have never been there, and neither has Jason or the girls. We have never been able to afford to take any kind of a family vacation before, so this is big for us ( if that is what she asks for). I will update soon!

Weaning Immunosupresents?

As you may already know Anna had a liver biopsy for her three year transplant anniversary a couple weeks ago. There was talk about putting Anna on a once a day dose of Prograf, (instead of the twice a day dose that she had been taking), if everything looked good on the biopsy. Well, the biopsy looked great! After talking to the doctors we learned that if they were to wean her medication, she would be the youngest and most recent out of transplant that they have ever tried this on. Yikes!!! And to top it all off, Dr. Alonso has left the decision it totally up to us. Double Yikes!!! The way she put it was that Anna would be their pioneer. The way I look at it is, Anna would be their guinae pig.
There are good things that can come of this, since Anna will be on a lower dose of immunosupressents she wouldn't get sick as much. Sounds good to me, especially since she will be starting preschool this fall. And also, what an honor it would be if it all works out, and Anna was a complete success! The down side of it is that she would have a higher chance of rejection. If that happened she would be put back on her now twice a day dose. Since she will be monitored closely, if she were to reject, it would be caught on time and would be easily treated. I'm not quiet sure what to do with all of this. Jason and I are trying to weigh the ups and downs. Dr. Alonso says that Anna would be a prime candidate for this because of her labs being perfect for these past three years, and also the fact that the biopsy looked good as well as the ultrasound she also had a few weeks ago. I'm hoping that Jason and I will decide soon. I know that I am leaning more towards wanting to try this. I will post again when the decision is made.