My now 4 year old

Well, Anna's birthday came and went. She is 4 years old now and in preschool, she is growing up so fast. Her first day of school went well. The first day was actually a one hour orientation for the students and parents, so her real first day wasn't until the day after her birthday. On Anna's birthday we had a little family party with pizza, cake and presents. It was nice, Grandma and Papa came over to celebrate with us. Anna is so such a sweet girl, after every present she opened she had to get up and give each of us a great big hug, and the thank yous' were never ending. It's hard to believe that she is 4 already, it's seems that it was just yesterday she was born.


Here are some birthday pictures. I especially love the one where she is holding up her four fingers!



On her first day of school she had a great day! We had to go for labs in the morning and since the ride is so long to the hospital at that time of day we were talking about school and what she thought she would do on her first day, about the friends she would meet and what she would learn. She seemed to be very excited about the whole thing and we talked for almost the whole ride (about an hour on that subject)then our conversation veered off onto a different subject and wasn't thought about again until after we went for labs and while we were eating breakfast at McDonald's. Anna suddenly came up with the fact that she was scared to go to preschool and she didn't want me to leave her there by herself. I was shocked by this comment, I thought she was ok with the idea. I just let her know that it would be fine, she would have fun and I would be right back for her before she knew it. By the time we got to grandma's house to pick up the baby and left for school Anna seemed fine. When we got to school, and the teachers opened the door for the kids Anna ran in before she said goodbye to me. I had to call out after her to give me a hug, she came running back to me, gave me a hug and kiss and ran back in. So, I left my four year old at school all by herself and she was fine without me. All I could do was sit in my car and cry, wipe my tears, then try to find something for Alex and I to do for 2 hours. When it was time to pick her up she seemed to have had a good day (but she wouldn't tell me much) We went and played in the school playground. There were a couple girls from school playing too, and they all played very nicely together and I got to know their mothers. Alexandria got to go on a park swing for the first time, she loved it! Anna and one another girl from preschool took turns pushing her, very gently, on the swing. That night when I went to tuck the girls in for bed Anna told me that she couldn't wait to go back to school the next day. My heart broke when I had to tell her that she was only going two days a week. She got very upset, poor thing thought she would go everyday like her big sister. It took a long time to settle her down and explain to her why it was only twice a week, and that Mary did that too when she went to preschool. Poor thing, I felt so bad for her, but it made me realize how much fun she had, and how much she will enjoy school all year!

Here are some pictures of Anna's first day of school, and at the park afterwards


I got the results of Anna's blood tests the other day too. Her Prograf level came back at the level they want it to be which is great, so we can go for three months without labs if all continues to go well. Her fasting blood sugar was normal at 95, and the other test which gives the average sugar for the past three months also came back normal. So, we will keep watching her because it is still a mystery why her sugar shot up so high those couple of times, but we won't stress about it either.

Thanks for checking in on us, we still have Mary's birthday to go yet and more days of preschool so there will be a lot more to share soon. Take care!

Anna's Clinic visit

We had transplant clinic Thursday and it went well. All of Anna's labs are perfect! As I mentioned in my last journal entry, we were worried about her blood sugar level and I will explain why. In a casual conversation my mother in law and I were having I mentioned how Anna is always so thirsty all the time. My mother in law, who is an insulin dependent diabetic, told me that she feels that way when her sugar is high and that it was one of the first symptoms she had at the time she was diagnosed with diabetes. We decided to go ahead and check her sugar for the heck of it. We tested her and her blood sugar came back at 399! Normal is between 80 and 120, so this was extremely high. I thought maybe her machine tested wrong so I went ahead and tested mine and it was normal at 106. At this time I started freaking out, but since Anna was acting normally I let it go and just kept a close eye on her. An hour later we were at home, but since my downstairs neighbor is also diabetic we used her machine to test Anna again. It came back at 176 which is high, but not 399! I called Anna's pediatrician just to see what he would make of it. He asked me to check it the next morning before Anna ate or drank and since we were going to transplant clinic the in a few days to let them be aware of it. So, first thing the next morning it was only 102, and that put me at ease. Come Thursday I made Anna's liver doctors aware of it, but they didn't seem too concerned. They told me that Prograf will make blood sugar a little higher, but not 399. They took a urine sample and that came back normal too. Since diabetes runs in both Jason's and my family they are going to check her with a fasting test that measures what her average sugars are for the past three months, and then we'll go from there. We'll get that done along with her Prograf level because...drum role please....they lowered her dose yet again! Since she has done so well with the once a day dose they will keep her level even lower now. They were trying to keep it at around 3, so now they lowered her dose and they will try to keep the level at 2!!! This is very exciting news to us. I will update on how her blood sugar test comes back.

At clinic we saw Natalie., one of Anna's liver friends that also received a part of her mommy's liver 7 months ago. Anna and Natalie had fun together while we waited for the doctors. After we were done with clinic we went up to the floor to visit with another liver friend, Annika who is inpatient right now. After a little while Natalie came to visit Annika too, so they had themselves a little party! They had a good time together playing with playdough and puzzles. It was so cute to see these three amazing girls together. It was also nice for the parents to get together. Here are a few pictures of the girls.




Here is Natalie and Anna Playing in clinic


Anna Visiting Annika in her room


Here are all three girls playing with playdough


This one is for you Moreena, Anna got the same cookie Anni had, she was sooo happy!

Back to normal

Well, a couple weeks since Anna's wish and we are all getting back to normal. There is so much going on for the month of September, including Anna's birthday next week, her first day of preschool and Mary's birthday only five days after Anna's. Last week Anna started gymnastics, and Mary started Hip Hop dance. I signed them up for the same time and same place so that is saves me an extra trip during the week. Mary was excited to see that a friend from school was in her class, and Mary's friend's little sister was in Anna's class. Anna was a natural, no fear at all. Jason and I both agree that she looks like a natural doing the tumbling. A lot of the other kids weren't too sure, but Anna was out there doing her thing like she had been doing it for years. Anna is such a wild child it didn't surprise me at all. I think Ballet was a little too structured for her. What a difference from her crying for me on the first day of Ballet last year, and almost forgetting to say goodbye this year. At least I know that she will be ok with me not being there in preschool, although I will try to volunteer to help out when they need it. This will be the first class that Anna will take that I will actually leave the building while she is in. I am a little nervous, but it is only twice a week and for only two hours each day. I am embarrassed that I haven't gotten a Medic Alert bracelet for her until just recently, but I was always with her or she was always with someone like her granparents that know everything about her. It will give me piece of mind when I leave her at preschool (trust me, before I got the bracelet I actually thought about sitting in the building for the two hours, how embarrassing.)

Here is a picture of her with her bracelet, she actually like the fact that she has a bracelet that she has to wear all the time, I thought it would be a challenge.


I am excited for her she gets board with Mary not around, so this will give her something to do. Another thing that I like about this preschool is that she will have the same teachers that Mary had when Anna was sick, so they know us and they are also excited that they now have Anna. They told me that if she was anything like Mary, it's gonna be great! Mary has always been a good student, good listener and "played well with others." Boy, they will be in for a shock. Anna is nothing like Mary. She is hyper, she tells tall tales (you wouldn't believe some of the things she comes up with) she is a bully, and likes to be the center of attention and tries to be funny so I think she will get the class clown title. I have a feeling I will be getting a lot of phone calls from teachers with this one.

Another thing coming up for us this September aside from a two cousins that have birthday's coming up, and a friends birthday party this coming weekend, a house warming party, and oh yes transplant clinic this week. On the 25th we are going to the Make a Wish 20th homecoming celebration. This will be great time to meet with other wish families in the Chicago land area. I am looking forward to the food (catered by some of my favorite restaurants) and the guest star Kevin Sharp! Kevin Sharp is a former wish child and is a famous Country Singer. He does so much for the Make a Wish foundation and I think it is amazing he will be there. The celebration will be held in the High School that I attended, so it will be cool for the girls to see my old school. We can't wait to see Anna's wish granters again so that we could thank them for everything they did for us, it has made lasting memories for our whole family we still talk about it often, and will for years I'm sure.

I will try to update soon, probably after we have clinic Thursday. I am going to ask them for a referral to get Anna tested for diabetes (but that is a long story, and I won't worry about it too much until there is something to worry about.)

Anna's wish trip

Well, we are back from Disney World. I am a little sad that it is over, but glad to be back home at the same time. I was worried about us all being sick, but it passed for the most part, although I had no voice for a few days. The whole trip was just full of excitement and surprises. To start off we were picked up by a limo that took us to the airport were we were greeted by Anna's wish granters (wonderful people), who were there to see us off! They gave the girls each a bag full of goodies for the plane ride. When we got on the plane Anna was so cute, she kept asking when we were going to blast off! When we got to the airport a volunteer from Give Kids The world Village was holding up a sign with Anna's name on it, she then escorted us to get our bags and our rental car. It was sooo hot down there, but I can't complain, it was sunny, and the palm trees were beautiful!

GKTW is an amazing place! When we got there we had an orientation were they gave us our tickets for the parks, along with shirts for the girls. The tickets included a three day hopper pass to the Disney parks, Magic Kingdom, Epcot Center, MGM studios, and Animal Kingdom, a two day Hopper pass to Universal Studios and Islands of adventure, and one day at Seaworld. After that they showed us to our Villa. I never expected this place to be like it was. Our Villa was fully equipped, all the things you would need in your own house, and very comfortable. We spent the day unpacking, we went swimming, and just explored the Village. They had two pools, a miniature golf course, the gingerbread house were we were served all of our breakfasts and dinners, the ice cream palace were you could have all the ice you want all day long and lunches, a movie theatre, a little train, the castle of miracles which was like a big play room with a carousel outside, and much more. It's unbelievable!
Here is a picture of the outside of the Castle of Miracles
This is the outside of our Villa


The second day we went to the Magic Kingdom! When we first got there we saw some Disney characters, and Mary bought an autograph book. After waiting in the first couple of lines we were told by one of the workers that we didn't have to wait in lines, as long as they see our shirts and pins we could go straight to the front of the lines to visit and get autographs! Thank goodness we were told that before heading over to Mickey and Minnie mouse because those lines were the longest! The Characters even spend extra time with wish kids, and there we times that it was private time were we would get pulled to side with them. We also didn't have to wait in long lines at the rides, sooo cool! It happened by coincidence that friends of ours were in Orlando at the same time we were there, so we also meet up with them that day.

Picture of the girls with "Uncle" Justin and his girlfriend Brooke

Meeting Mickey!

One of mine and Jason's favorites of Mary on the carousel


The third day we went to Universal studios and Islands of adventure. Man, we thought Disney treated us well! At Disney we would be able to go through the fast pass lanes, and still have to wait a little bit, but there they would escort us through the crew member doors, and not have to wait at all! There were more rides there that Anna was too small for. It was so funny the first ride she had to be measured for she was just a tad too short for. As they were measuring her and telling us that she wasn't tall enough she stood on her tip toes, and almost fooled them, nice try Anna! We had a good time, but it started to rain towards the end of the day, so we left a little early.

At Universal with Shreck!


The fourth day Anna had her Disney princess breakfast at Epcot center, so it was another day at Disney! The breakfast was good and Anna and Mary were excited to see Belle, Snow White, Sleeping Beauty, princess Jasmine, and Mulan. Anna was upset that Cinderella wasn't there, so she told Sleeping Beauty that SHE was her Favorite. After the breakfast we stayed at Epcot for a while, then headed over to MGM studios, then back over to Magic kingdom for the fireworks. The fireworks display was amazing! Wouldn't you know they call the display wishes? How perfect! It was beautiful to watch Anna watching the fireworks on her Wish trip and know that wishes can come true. Jason and I were teary eyed. It was a magical experience.
Mary and Anna with Sleeping beauty at the Princess breakfast

Cinderella castle



On the fifth day we went back to Universal Studios, and the Islands of Adventure.
Here we are with Scooby, shaggy and Mr. and Mrs woody wood pecker

Spider man!


On the sixth day we went to Seaworld. At this point I think Anna was sick of all the walking and complained a lot. We went to the sealion and Otter show, and Mary got picked from the audience to be a volunteer. I think it helped that she was wearing the wish shirt and button, and since we were with make a wish we got to sit up front. Anna was a little jealous that Mary got picked, but I think she enjoyed watching! We also caught the Shamu show. We sat in the "soak zone" which we sat in at the previous show and didn't get wet at all, but it was opposite here. That darn whale splashed out gallons of water on us. It felt good because it was very cold water, but Anna had a heat rash from our previous days out in the hot and humid weather and when that salt water got her it hurt. Poor thing, I felt so bad for her, and then for Mary because at this point we had to leave and Mary loves sea animals (she says she wants to be a marine biologist when she grows up.) On our way out of the park we saw the dolphin nursery, but not for very long because we had to get home to wash the salt water off of Anna. It was actually nice to get back to the village and swim, have lunch, and start packing to go home the next day. On the day we got there at orientation they let you pick between having a parents night out at a local restaurant, or a family night at medieval times and tournament. We have always wanted to go to medieval times, but never had the money, so we picked that and this was the night to go. It was cool, we all enjoyed the food and the show.
Here is Mary shaking hands with the sea lion


The last day we had to check out by 11:00am, so we woke up early to make sure we had time to finish packing, eat our last breakfast there, and say goodbye to the village. This was a sad day. We also went to the castle of miracles to try and find Anna's star on the ceiling (On the day we got there they gave Anna a little star to write her name on and make a wish on so that the fairy can place it on the ceiling of the castle for it to stay up there forever.) We were told that there are over 10 thousand stars on the ceiling, all kids that have stayed at GKTW. It really is an amazing thing that there is a place like this for kids, but also a shame that there has to be one. We will never forget our time there, and it is nice to know that they won't either. After check out we had hours until our flight, so we went to the Animal kingdom. For lunch we went to the Rainforest Cafe, and as we were heading out the door we noticed a huge storm had started while we had our lunch. We bought some ponchos, and headed to the car in hopes of waiting out the storm and head to Magic kingdom one more time before we left, but there looked to be no hope of the storm leaving so we just drove around. We found an outlet mall and got the girls some shoes for school, then headed to the airport. The fun didn't stop there though, we were also picked up from a limo to take us home from the airport.

This is one vacation that we will never forget. Money could never buy a vacation like this, it was so unbelievably Magical. Thank you Make a Wish, and GKTW!


We got Mary a shirt that says Thing 1 and Anna a shirt that says Thing 2

House of sick

Ok, two days to go to Disney, and the whole house is sick. Yesterday morning and the night before, Anna couldn't stop coughing, the baby had buggies all over her face when she woke up, I had a sore throat, and Jason had a tight chest. Mary, with her very strong immune system was fine yesterday, but woke up this morning coughing and has the sniffles. So, yesterday morning I called my pediatrician to make an apt for Anna, and they try to tell me that I couldn't bring her in, that they were booked for the next three days.
Here is how the conversation sounded:

"Hello, Dr. Jabri's office"

"Hello, I was wondering if you might have any open appointments today, my daughter Anna is not feeling well?"

"No, I'm sorry we are booked through Thursday"

"Well, we are leaving for Florida on Thursday, couldn't you squeeze her in?"

"No, I'm sorry, what day do you come back, I could make an appointment for her then!"

"Well, what should I do for my immune suppressed child that was up all night coughing until then, if you go ask Dr. Jabri he would want to see her, I'm sure he would."

Only minutes later she comes back on the phone,

"Ok, Dr. Jabri would like you to come in, could you be here in an hour?"

I don't know why they always give me a hard time, they should know us by now. My Dr. always sees Anna when she needs to be seen. I also brought the baby with us, just to basically ask him what to give her and how much. She wasn't very bad yesterday anyway. Anna only has a chest cold, but she sounds sooo bad. I almost feel bad that I brought her in for just that, but she has had bronchitis in the past that required antibiotics so it is better safe than sorry. The Dr. gave her a breathing treatment, then a RX for some heavy duty cough syrup. She wasn't coughing as much last night, but when she does she gets stuff up so that's good. Now, last night Anna slept fine, but Alexandria couldn't sleep at all. She was so stuffed up and she doesn't know how to handle it. She had to sleep in her swing because when she lied down she couldn't breath. I spent the night using saline drops and the nose plunger on her. This morning, everyone woke up miserable. Even though it is very hot and humid out today I have got the windows open to air out the sickness in this house. We are all lining up to take medicine. I need to do some laundry before we leave, but I am having a hard time getting started on my day. Poor Jason had to go to work today, and he might have it worse then all of us, he sounds horrible.
Please pray for us, that we will all get over this in the next couple days so that we can enjoy our trip.



Here is Anna not feeling so good being comforted by her daddy.

Countdown to Disney

It's almost here!  Four more days to go, then we are off to see Mickey.  This is what our whole summer has been based on, waiting to go to Disney World.  So, our paper chain is down to four links, then all that will be left is Mickey's head.  Yesterday Anna's wish granters came to give us our plane tickets, and final intinerary.  These people are the most organized people I know.  They have left us with no questions because they have covered everything already.  They, of course, brought over some more presents for the girls.  For Anna, a Cinderella dress with a tiara, wand and slippers. . 





For Mary, the new Harry Potter book (which I can't wait to read myself!)  and for the both of them Make a Wish t-shirts and buttons, and wrist bands.  They encourage you to wear the shirts, for added attention when we get to the parks!   Anna loved her princess dress, she refuses to take it off!  I am guessing that we will see a lot of little ones running around wearing them anyway.   I am not sure if I will post again until we get back, I will be busy getting ready for the trip.  On my list of things to do there is making sure all of our pets have enough food for my neighbor who will be taking care of them.  Thanks Lorraine!   Getting diapers, formula, and all that stuff for grama who will be taking care of  Alexandria.  Mary will be starting school as soon as we get back so I must go shopping for school supplies for her too.

Yesterday we went to my nephews birthday party, then went shopping for a digital camera! I have been wanting one for so long now and now I finally have one. I got it for only a little over $100 and I think it does the job well. I need to get used to the settings and stuff, but I have taken a few photos on it already (like the ones of Anna above) So, beware. I will be posting a lot of photos now! Here are a couple more of Alexandria and Mary!

Scrapbook Page

(click on image to enlarge)

(click on image to enlarge)

I made this page for a scrapbook we did for classkids a while back. Classkids is a support group for parents dealing their child's liver disease, and transplantation. This book was sent around all over the country, and each of us added a page of our child. It came out great, but it was hard for everyone to want to wait for it go around again for everyone to view it. Then Laurie (a fellow member of classkids) offered to make a cd scrapbook and send one out to everyone that wanted a copy. So, I want to say thank you Laurie. It came out great, and all the pages look wonderful!

Anna's little hospital stay

Well, were back from an unexpected hospital stay with Anna. I guess we were due since she has gone three years without being admitted for anything.

So, all day Friday Anna was full of energy, and we were outside for most of the day just playing, and she wasn't playing with anyone that was visibly sick. Saturday morning was a different story though. She woke up before me and complained that her tummy didn't feel good. I asked her to go and lay down on the couch in the living room while I got the baby a bottle. I turned on the TV for her while I feed the baby, and then when the baby was done I put her down and went to cuddle with Anna because that is all that is usually takes. So, I went over by her and she had fallen back to sleep. I tried to wake her up but she only woke up long enough to crawl on me. I noticed right away that her heart was racing, and she looked very pale. I woke Jason up and took Anna to the ER nearest to my house right away. When I walked into the ER holding Anna it was VERY busy. After we got seen in Triage they told me to take a seat, and that it would be a long wait because there were 11 cases ahead of us. I told them that if we had to wait any longer at all I would just drive Anna to Children's (an hour away, but I would have been waiting there for 2 hours) and that since she was a high risk case they would take her at Children's right away. Needless to say, they got us a bed.

They took some blood, started an IV and took some urine to rule out a bladder infection. She didn't have a fever through any of this. After a couple of hours they got most of her labs back and her liver and kidney function were all normal, but her white blood cell count was at 30,000 (normal is 10,000) That usually indicates a virus or infection, but they couldn't pin point anything. They then called Anna's doctors at Children's, but since it was a Saturday they talked to a resident, who had to get a hold of Dr. Alonso, or Dr.Emerick (our very good liver docs) so that took a couple more hours. Anna's doctors wanted her there at Children's (which at this point I was very glad to hear) She was still so sleepy, and her heart rate was high. So, this was Anna's first ride in an ambulance. She was so good through all of this, didn't show any signs of fear, my brave little girl! By the time we got to Children's Anna seemed to feel better, at least she was able to stay up now. Anna was excited to be there, a very familiar place, and she asked to go to Mcdonalds! (there is one in the basement there) Asking to eat is a very good sign!

It was like a little reunion gong up to the liver floor. Anna hasn't had to be admitted since she was 7 months old. All of her old nurses were happy to see her and couldn't believe how big she was. We got a single room, but right outside the nurses station which is a little loud, but easy to get the nurses attention. They kept her on IV fluids, and started her on an antibiotic, even though they didn't know what they were treating. We got there around 6:00 pm on Saturday night, so we didn't get to see a real doctor until late Sunday morning. They sent blood cultures at the other hospital and they didn't grow anything, but Anna's white blood cell count was still high so they wanted her to stay one more night for observation, and to keep the antibiotics going. Monday morning Anna was feeling fine, so when the doctors came to make their rounds they told us we could go home. All of her liver functions were fine, as well as her kidney functions, and her white blood cell count was almost back to normal. It was scary not knowing why she was feeling the way she was, and the fact that they couldn't find anything wrong with her. Our liver nurse put it like this, "who cares what it was, as long as her liver looks good, and she is feeling better now". Today she is much better, but I am keeping a close eye on her.

I don't know how I ever survived staying at the hospital with Anna for weeks at a time. I was gong crazy for just two days. I also forgot about that 2 hour delay on everything that hospitals seem to have. Thank goodness Anna is home and healthy! I think Anna is just keeping us on our toes, to remind us to not take her health for granted. You did it baby!

Staley Da Bear

Yesterday we took a family day and headed out to Bourbonnais Illinois to see the Bears at their training camp. Jason goes every year to watch the Bears practice and he wanted to bring us along this year. It was originally supposed to start at three in the afternoon, but because of the much needed rain we had the night before, practice was moved to eight thirty in the morning. That meant we had to leave by seven o'clock in the morning if we wanted to get there on time. I was not thrilled, I am so bad about getting up in the morning. But, it was planned, and the girls were looking forward to it so there was no turning back. It was more fun than I had anticipated. It helped having Jason up and ready to help out with getting the girls fed and dressed in the morning. We brought the baby to grandma, which she loved. We got there on time and headed over to were the Bears come out to practice to try and get some autographs. Much to our surprise Brian Urlacher come out and headed over to give us and a few others his autograph! He always tries to sneak in and out of training camp to avoid the fans, so we were very lucky to say the least. Jason has been going to this camp for 6 years and has never come close to getting his autograph. It's probably because of his beautiful girls that he had with him! So, that was cool.

After sitting there and watching them train for a little while Staley Da Bear(the Bears mascot) came around for all the kids.

(here he is visiting with a sick girl at the University of Chicago Childrens hospital )

Anna and Mary were very happy to see him, and went up for a closer look. After watching him with the other kids for a while Staley noticed Mary and Anna watching him and went over to them. I yelled over to the girls to go give him a hug, and Anna backed away very unsure about the whole thing. Mary went right up and did it. Then, when Anna got scared and came over by Jason and I, Staley began to act as though he were crying. Anna didn't seem to care much, but I was sad for him so I went to give him a hug to show Anna how much better it made him feel. She wouldn't budge. So, after a little while he left to go talk to some other kids. When he was out of site was when Anna worked up the courage to want to hug him. She felt bad that she made him feel bad. Jason took her and they looked around for him, but they couldn't find him. He wasn't around for the rest of the time of the practice, and when that was over we went over to try and get some more autographs. Anna didn't care too much about the players (or the big football guys as she says.) She wanted to see that darned bear, and made quite a fuss over it. One of the security ladies overheard her, and then herself went looking for Staley. Turns out he was already gone, and wasn't coming back till the night practice, and there was no way we were waiting around till then. Jason told Anna that he would bring her next year, but she still felt bad that she didn't get the chance to hug him.

So, I am starting to wonder if this is how it is going to be at Disney. Will she never work up the courage to go up to her favorite characters to give them hugs until they are gone? Are we going to have every security guard, or worker looking for Mickey, or Goofy, or Cinderella? I reminded Anna about how bad she felt when she was told the bear was gone, and that she wouldn't get another chance until next year to give him a hug. Then went on to tell her that when we go to Disney, she should remember that she might only get one chance to do this, and she had better take the chance when she has it so that she won't miss out and feel bad about it later. Oh, what a hard life lesson to be learned.

2 piece bathing suite

Is it wrong that I let Anna wear a 2 piece bathing suite? [There is a story behind this question]

We ran into one of Anna's friends from Ballet and her mother at the pool today. Of course Anna was instantly happy to see her friend and they headed right for the little slide, and slide down it over and over again. While this was going on I was talking to the little girl's mother. After only a couple minutes of small talk she butted into my turn with "sorry to interrupt, but I just have to ask why Anna has that scar." I then, without hesitation, went on to tell her our story. She then responded with something that I was not expecting. I usually get a, "wow, that must have been hard" or "well, she looks great now!" or "you would never know by just looking at her." Something along those lines, but her response was "and you put a 2 piece bathing suite on her?" I was very surprised, and offended by her response. I wish I could have come up with something brilliant in our defense, but I'm not very witty. I told her "why not? She liked it, she picked it out, and I'm not ashamed of what happened to her, and neither is she." She just kindof nodded and walked away. For the rest of the time she was there she was glaring in our direction. Later at the concession stand she was talking to one of her snotty friends, and I overheard something along the lines of "she just wants attention." I was horrified! She thinks that I am exposing my daughter for attention! I was hurt at first. I am still very upset about the whole thing, but the more I think about it, the more angry I get. For the whole 8 months that our girls where in Ballet together she was very nice, we talked (not like we were best friends, but casual mother to mother stuff) and the subject never came up, so I never just brought it up. For her to think that I want attention for it now is absolutely nuts.

So, is it wrong for me to put Anna in a 2 piece? I am thinking of great comebacks to say if this happens again, or if we run into her again, but I am drawing a blank. Any feedback would be great!



This picture was taken in early June this year.

Just one little word.

Please leave a one-word comment that you think best describes me. It can only be one word. No more. And you can't repeat a word already posted! Post in your blog (if you have one) so I can leave one word about you!

Questions for Anna

Recently on Classkids someone put a post up called "Questions from kids." This women's daughter goes to school, and kids ask her many questions about her liver transplant. She went through the questions with her daughter and posted the questions and her daughters responses to them. It was really cute to read. With Anna starting preschool in the fall I wondered how she might answer these questions if kids would ask her them. I know she was too young to remember anything, but she has been told about it from us, and we try to explain things to where she would understand them. Here goes:

What is a liver transplant?
It's just a liver transplant!

Why did you get a liver transplant?
Because my tummy hurted.

Where did your liver come from?
From you, right mommy?

Why do you have scars?
Because the doctor had to take out my liver and put in my new one.

Why do you take medicine?
Because mommy gives it to me.

Can you play outside?
Yes!

Will I catch it and get sick?
Nooo!


I liked her answers. I can't remember how the subject came up, but she once asked her friend "when you had a liver transplant...?" I can't remember exactly what her question was, but it came a surprise to me. It's such a normal part of her life, she seems to think that everyone has had a liver transplant. I then explained to her that not everyone has to have a liver transplant. She understands now, and she is getting better at understanding what happened her, why it happened to her, and how much better it has made her. I pray that she will be strong when she is asked these questions by her peers, and not uncomfortable. It is so hard to be different in any way when your a kid. You would never guess by just looking at her that she was so sick at one time, so I don't think these questions will come up often, but it is bound to happen. I'm not very worried.

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!