Stuff to update

Well, since the last time I updated there have been some things going on around here. First of all..........I got a job offer!!!!!!!!!!!!!!!Wooohoooo!!!!!!!!!!!

It might not be exactly what I had in mind, but I gotta take it because I am lucky to even get an offer the way the job market is right now. It's part time, 4am-8am. Ouch! It's an awesome hospital though, it's where I did my internship at so I know how things are done, for the most part. They offer benefits, the pay is good, and hopefully when a full time position comes along with the hours I like, I'll be considered. I'm just happy to be able to do this. Another good thing is that I'll be home for the girls all day and I won't need to spend lots of money on child care.

In other news we purchased a second car! It was getting old having only one car and with me starting a job it was needed even more. It's a 2006 mini van, in great condition, very low millage, and we got a great deal on it. Good thing I had an extra Donate Life magnet to put on it or nobody would know it's mine! HAHAHAHAHA!

Also, we had an appointment at Children's last Thursday and Anna's doing great! Her labs look perfect, still, and we were able to get a lot of questions answered from our favorite (not to mention, the best) liver doctor. She really put our minds at ease with this whole rejection thing. We feel so much better about everything now. She will be watched closely, still with biweekly labs, and she will have a repeat biopsy in late spring/early summer. We are assuming that everything is fine with her being back on her meds with liver numbers staying stable. They said that the biopsy definitely showed rejection, no doubt about it, but it was caught before it showed up in her lab work. If she wouldn't have had her biopsy when she did, and was still off of her meds, there is no question that her labs would have started to show increases in her liver numbers. She would have become noticeably jaundiced, along with other signs of liver problems. At that point there would have been some amount of liver damage. So, since it was caught right away, all is good, her liver is still perfect!

Also, Mary and I went to a solo concert on Saturday where Mary was judged for her performance. She did very well, she did mess up once, so before she got her score she was freaking out. They are judged against themselves and it's scored according to grade level, how long they have played for, appearance, memorization, and how they hold themselves and their instruments. May got the highest score possible! She will receive a medal in class next week! Go Mary!

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Disturbia

I took this video of Alexandria dancing to her favorite song, Disturbia! Not the most appropriate song for a 3 year old, but oh well! She was watching the video a lot on TV and learned the dance on her own! It's so cute, the only problem is that the video is dark. I tried to do it this morning with the sun out and the shades open, but she won't do it on demand anymore. There are some parts that she just stands there, but mostly she is jamming! SO FUNNY!

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Anna's doing fine

Anna's labs looked good. This would make me feel better, but since her labs looked good the same day of her biopsy, it doesn't make me feel as good as it should. Now Anna has a cold! The joys of immune suppression.

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Sorry to leave everyone hanging. I know I left the last post in a very negative attitude, but I am feeling better about this now. It's just that I have never had to deal with the news of rejection before, and I have been so used to good news when I get called with results, it was such a shocker! The main thing is that Anna's doing fine. We are still waiting on her last labs though. I will let you know when we get results (probably later today).

She has been a little cranky and getting headaches which are probably side effects from being on these medications again. Otherwise, she is the same beautiful, sweet little girl.

Biopsy results:(

Dr. Ekong called me today to tell me that Anna's biopsy showed rejection. I can't even believe this, she has NEVER had rejection before. I talked to Dr. Ekong and then Joan our liver nurse and they are also in disbelief. Even the blood they took on Tuesday, the day of the biopsy didn't show anything suspicious

I am feeling super guilty right now. I made the decision to go ahead with this study, and now I feel like I put my daughter in jeopardy.

She is not being admitted right now. They put her high doses of Prednisone and back on Prograf. Now we need to monitor her level of Prograf and watch her numbers to make sure they stay were they should be. They don't plan on doing another biopsy after her treatment, they are just going to watch her labs and if they stay down they will just assume the medication took care of it. Well if they didn't see this in her blood work the same day the biopsy was done, how are they going to know if or when the treatment is working? I don't get it.

Anyway, she is pulled from the study. They will not try this again which is fine with me. I just want her to stay healthy.

Why did we try to fix what was not broken? Man I am a mess right now!

BIOPSY DAY

Anna had her biopsy today. Everything went well, we will know the results in a few days. I'll update then because it's been a long day, right now I'm sleepy, doing laundry, trying to get the kids to bed, need to work on an assignment for one of my classes, and I have to get up at 5am for another 8 hour day at the hospital for my clinicals.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~UPDATE~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Anna is feeling much better today than she has in the past few days. Anna's labs are great! I'm glad we waited until she was feeling better to get them done. I think I overreacted, but it's hard not to with her. Everyone is on the mend, thank goodness. Just in time for me and the girls to go back to school!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~UPDATE~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Christmas came on went so fast this year. Possibly because I have been dealing with a lot of sickness floating around our house since Thanksgiving. Off and on, at least two people at a time in our household have been down with something. Anna is always the first to get it, which I thought was weird especially since she isn't immune suppressed anymore. Then it's me (is it because we share the same liver?), Alex is next. Jason had something for a few days only and Mary had nothing more than the sniffles. We had a day here in Chicago where it was 62 degrees! Couldn't believe it, but I thought great, open all the windows, do some major cleaning, wash all bedding and get these germs out of here! Guess not though, Anna spiked a high temperatures last night, and she is feeling very crummy. I automatically thought it was the flu because it has hit us for the last few years at the same time of the year, even with us all getting the flu shot. The flu is the worst, it sucks when we all get it and I'm the one, no matter how crappy I feel, to take care of everyone. So I start mentally preparing myself for every to be sick. After thinking about it for a while I wonder if maybe it might not be the flu. This is a fragile time for Anna with stopping the immune suppression, I started worrying that maybe it's rejection. I found myself praying for the flu at that point. I called Children's and they just want me to watch her and gets labs done in a few days. This is hard for me to accept, no one else is feeling bad (except Alex has an ear infection and a lingering cough). If we get labs done Anna's numbers will most likely be elevated as with any other normal "healthy" person who has a fever. It would make them want to jump to conclusions and may buy her a bed at hotel Children's Memorial Hospital and an early biopsy (she already has one scheduled for late January). So, we are watching. I find myself looking at the whites of her eyes for a tinge of yellow, I can't even tell you how long it has been since I have done this, it was a habit for the longest time, but she has never had rejection so I don't think of it often at all anymore until now, knowing she isn't on the medication that transplant patients take to avoid rejection, usually for their whole life. I knew this was the kind of thing that I was risking with this study. Please pray that this is just a virus for Anna.

In other news, other than sickness, which by the way I'm sorry for boring you with, everything else is normal. I can't wait for school to start again. The kids are getting cabin fever even with all the new stuff they got for Christmas. I need to find ways of entertaining them without going broke! I need to keep busy or I'll drive myself crazy with them, and also the nervousness I have about starting my externship January 12th! I am excited, but so nervous. It's been so long since I've worked, and while this is for class, it's going to be more like job training. That means drawing blood of complete strangers and trying to gain their trust as a student phlebotomist. You have to wear a student badge, and I'm wondering how many times I'll be turned down. I can't take it personally though, I know I have turned down students in the past while Anna was inpatient. I just couldn't trust a student "practicing" on my baby. I know it will make me feel bad, and then I'll know how it felt to all the students I turned away in the past, but it will still really suck. I just can't wait to get past my clinicals and get a badge when I am hired on, that doesn't say student. Wish me luck!


By the way, HAPPY NEW YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Stay safe!!!!!!!

Merry Christmas (an update in pictures!)

Making cookies with Noah! (Noah's bug brother Brandon too, but he doesn't like his picture taken!) Getting ready for Santa's arrival!

Christmas is here! Santa came!



Cats love Chirstmas too! What a day, I'm tired. Crap, it's only 9 am!

Merry Christmas, hope every had a wonderful day!

Go Elf Yourself!

So, just in case I don't post till after Christmas, GO ELF YOURSELF!!!!!!!!!

Seriously, it's a lot of fun!

Send your own ElfYourself eCards

Anna is done with her medicine! The medication that helped her body accept her liver. The medicine we were told in the begining of all of this, that she would need to be on for the rest of her life. She doesn't have to take it anymore! The withdrawal study has gone smoothly, Anna is in perfect health, and her body has agreed to let her liver make itself at home!

Anna took her last dose of Prograf today!

Of course I took pictures to document this special occasion! As you can see, Anna wasn't nearly as thrilled as I was, plus she is not a morning person!

7 years ago today.

Seven years ago today Jason and I handed our 7 week old baby girl off to total strangers. We put her life in the hands of a surgeon we never even got the chance to meet. Just days before we found out that Anna had a terrible liver disease and would one day need a liver transplant. Our whole world came tumbling down.

During those 7 hours of waiting, with very few updates, Jason and I sat in the surgical waiting room very quietly. I don't think we knew what to do, what to say to each other. We were just so worried our baby. Not only about what was going on during the time she was in the operating room, but about the rest of her life. There was so much to learn about this disease, there where so many unknowns, we only just heard of Biliary Atresia a few days before, when her diagnoses was confirmed by a liver biopsy. From what we read, and the way the doctors talked about, it sounded so terrible. It was so terrible.

It was so hard to see her afterwards, that long incision across her belly, all the lines she was hooked up to; machines, medications. At that point of time I felt bad for Anna. I never thought she would live a normal childhood. It seemed to me that this was going to be it, she would spend all of her childhood in and out of the hospital, her quality of life would not be good.

I had not thought of this today until I was in class, drawing a classmates blood, and filling out my orders. I asked someone what the date was, and then I remembered. Memories came flooding back to me. I would have never thought, 7 years ago while sitting at Anna's bedside in the hospital, that we would be where we are today. Just earlier this morning I got a phone call from Children's letting me know that Anna's blood work that she had drawn yesterday was perfect. Again. Music to my ears every time I hear it. It never gets old. She is in perfect health, she is like any other healthy 7 year old, she is thriving in 1st grade, she is a little gymnast. She enjoys life, she lives it to the fullest, she doesn't let anything get in her way, she is a fighter.

She is my inspiration. I have had a feel good day today. I love what I will be doing for a living. Working in health care is what I want to do. I am good at it, I enjoy it, I want to help people. I don't know if I would have been inspired to do this if it wasn't for the road I have traveled with my little miracle baby. I was Anna's nurse for those times in the hospital, I jumped in and did anything they would let me do. I know I still have so much to learn before I am a certified nurse, that wasn't my training, but it sure didn't hurt.

Thank you Anna, for the lessons you have taught us, for being you.

Wonderful little girl.

Halloween Pictures

We had a fun filled Halloween! Not only did the kids get to dress up on the day of, but they dressed for a fun fair at the park district where Mary won most beautiful costume, and Alex cried her little eyes out because she thought she deserved a trophy too (and if you ask me she should have won cutest superhero!). We also went to a birthday/costume party the day after Halloween, so that was three times the fun this year!

In other news Anna is now on a once a week, once a day dose of her immunosupression! I can't even believe it, not even a bump in her liver numbers! She'll take her last dose in early December and then that's it! After that she will still go every other week for blood draws and every three months for clinic for a while, and in February she will have a biopsy to make sure her liver is handling everything. Also, Annika is doing great, she got released from the hospital and is staying at Kohl's house for a while as she needs to be monitored very closely. Let's hear it for healthy livers!!!!!




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Oh yes, let me also post pictures. We actually also went to a little fun fair at the girl's school where they got their faces panted, so it wasn't a Halloween thing but I'll post those pictures too!

Most Beautiful!

No, I'm not just bragging, the vote was unanimous!

Mary won most beautiful in a costume contest at our park district's Halloween fun fair!

Let me just first let you all know, for those that don't check Annika's Mom's blog, that Annika is doing fine. For updates please visit Moreena's blog here.

I have had a busy week. First of all last Thursday Anna had her annual 3 month checkup at transplant clinic at Children's. She had something like 12 tubes of blood drawn, and we saw the doctor. Her part in the study is going very well. All of her labs (which are drawn every other week) have been looking normal, even now with her only taking her medication twice a week! Also, her liver feels good, they can't feel her spleen (that's also good), everything checks out! If you weren't looking at her charts or her scar on her belly, you would just never know she ever had anything as serious as a liver transplant. Lately I have really been reflecting on Anna's past and her health now, how we got to where we are, and how lucky we are to have this precious little girl in good health with us today. What a little miracle!

We also got to see Moreena last Thursday after clinic. Anna had gotten Annika something special thinking that she was just going to be inpatient and we would be able to visit with her and her mom. Then I found out late the night before that Annika had been called for transplant! Obviously, since Annika was basically fresh out of the OR, we only just met her mom outside of the Pediatric ICU to give her the gift for Annika. We found out that Anna and Annika picked the same costume for Halloween this year, must be because they are liver buddies!

Speaking of Halloween, we spent much of the day yesterday searching Halloween stores for cool costumes. Mary is going to be Miss America, Anna is going to be a zombie cheerleader, and Alex will be super girl! Mary's costume is easy because we already had the dress, all she needed was a Miss America sash, which I found on ebay, and a tiara. Anna's costume is also easy because Mary was a zombie cheerleader when she was in first grade so we already have the costume. I thought maybe Anna would change her mind while shopping because she wanted to be part of the shopping experience, but she was fine with not being able to buy anything. We did get some black and white makeup for her, so maybe that helped. Alex picked Super girl! She has really been into the new Superman movie, Superman Returns, so I could understand why she picked that. I just don't know how she started liking that movie so much because it's not really a movie that you would think a 3 year old would like, but Alex does. I'm most surprised that she didn't want to be a princess of some sort. We are also attending a costume party/birthday party this year, and the host says we all have to be dressed up in order to come, so Jason and I had to get a costumes also. It might sound lame, but I'm going as a pink lady, and Jason is going as a greaser aka, T'Bird! I love Grease, so Jason graciously agreed to be a greaser to compliment my pink lady costume! Thanks babe!

We also had Noah's 1st Birthday party over the weekend. I can't believe my baby boy (I mean Jenny's baby boy), is already one! He has been walking for almost a month now, if I hadn't mentioned that before. I think he enjoyed his party, he didn't really get deep into his cake, he was trying to pick up the number 1 written on his cake with blue frosting with he thumb and pointer finger, it was so very cute! He did make out with some very awesome clothes, really cool toys, and mu-la for other stuff he needs and wants! The best gift of all for him was having his favorite "Auntie" and "cousins" there! HAHAHAHAHAHAHAHAHAHAHA!!!!

Other than that I have just been studying for my midterm for one class, and a final exam for another class. I took those today and I think I did well on both exams, but it wouldn't hurt to have some crossed fingers for good results so that I can keep up my 4.0 (please don't get that excited for my having a 4.0, it's counted for 1 class that I did over the summer, my first ever college course!) It would be awesome, however, to keep that 4.0 because it would help me to get into their nursing program, which is my ultimate goal.

Ok, what else. I think that's about it. I'll just finish up with a couple of pictures from Noah's party!

From this..............................


To this...............................
How does that happen in a year?!





More random pictures from the party.

Prayers for Annika

Update:

Continue to PRAY PLEASE. Annika is needing a lot of blood and fluids during her transplant.


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Ok, everyone who might still read my blog. Hopefully people will browse here by chance, maybe even pass it on to your friends.

We need prayers for a fellow liver buddy of ours. Her name is Annika, some of you might read her mom's blog, Falling Down Is Also a Gift. She was listed for her third transplant within the past few weeks, and she received her call for transplant today, and on her mom's birthday!

Unfortunately, this will not be an easy transplant due to many past surgeries she has had in that area, not to mention her previous 2 transplants. Her surgeon (the same surgeon that did Anna's transplant) is estimating 18 hours. Please say prayers for this sweet little girl who has been through so much, her family, and the donor family.

Gosh, this picture is so old, Anna was 4, so three years ago. I think that was the last time we saw Annika, I just wanted to put a face to Annika's name.

Time for a real update!

It's not laziness! I have school to blame! There is always reading to do, studying, I have two big research papers to get done, and tests coming up! School is kicking my but! I can't wait to be done with this, and it's not even close to being over! Don't get me wrong, it's great to know that I am doing something that is going to benefit all of us in the end, it's just a lot of work. Plus Jason still works lots of hours, so I am full time at home too, so I guess I can say that school is only a part time thing. I don't know what I'll do when I start working, we are going to have to split up house work, dinner's, and all that. Time to actually fill out that chore chart we bought so long ago...if I can find it! We'll work it out, we always do!

Another September is almost gone, but not before another full weekend of birthday parties and a baby shower, and a baptism! Oh man! What is with my family and September?

Well last weekend we finally gave Mary (now 11) and Anna (now 7) a real birthday party. I think it's been since Mary's 6th and Anna's 2nd birthdays since we threw a party with friends from school and more than just our immediate family. I was worried that at this age they wouldn't want a combination party (their birthdays are only five days apart), but when we mentioned having one they were all for it! I think maybe they were just grateful that we were able to do it for them this year, they weren't about to push their luck. We let them pick 5 friends each from school, then we had a few family members with children and close friends. There were about 20 kids all together, so it was definitely doable. We had it out in our front yard, Jason cooked up some hot dogs and burgers, and we hired a magician! Fun was had by all, it was a great day! The best part of the day was seeing the girls have so much fun and feel special. They really deserve it, but I think Jason and I got more out of it than they did. It just felt good.

So, Mary got a new digital camera for her birthday and Anna got an IPOD shuffle. Both from Papa and Gama. I am jealous of Mary, her camera is way better than ours, the pictures came out beautifully! Most of these photos are taken with Mary's camera.

Guess who's birthday is coming up....HINT, CAMERA, HINT, HINT! (I know you read this Jason!)