Friday, December 04, 2009

Still around

Since the last time we updated:

We got a puppy!



Alex likes to believe he's her dog



Gizmo kind of likes him



Did I mention his name is Hester (as in Devin Hester of the Chicago Bears)



We all love him!


And, Halloween came and went.






Mary was Michael Jackson






And just recently Thanksgiving came and went. I hosted this year and cooked the entire dinner on my own! I ended up roasting a Turkey in the oven and Jason deep fried one. Both Turkeys were excellent!



Tuesday, September 01, 2009

Back to school!

Mary started Middle school this year and is loving it! She thinks it's awesome that she gets to travel from class to class, have a locker combination and all of that. She is making tones of friends and can't wait to get check out some of the clubs. Anna is now in 2nd grade and she loves that she can now walk to school (since we moved just down the block from it) and she got one of Mary's old teachers this year. Alexandria started pre-school today. She was so excited and loved every minute of it! She got one of Anna's old preschool teachers who we just adore. She is actually one of our favorite nurses from Children's PICU, mother in law.









Sunday, July 19, 2009

Sorry I haven't updated since that last post when Anna had her biopsy. I know I said I would let you know the results, and I'm sure most of you do anyway, but for those of you who only know of us from this blog I'm sorry I left you hanging. I actually just found of a couple people who read this blog that I didn't know even knew about it. For those of you, sorry. I really didn't think many people looked here. Also I have been working a lot, have been really tired, and we just found out last week that we are moving at the end of this month so I just haven't had the time.

We didn't get the results we wanted to get. Anna is still having mild rejection. It was another shocker that no one expected. Her doctors said the expected to see resalution. Let me tell you, even though we knew that she had rejection in January, it was unexpected that it would still be going on 4 months later, especially with Anna being put back on her meds. The good news is that it still looked better than her last episode (which they said was mild) so this is even more mild. They did not have to put Anna back on steroids, they just put her on a twice a day dose (up from a once a day dose) of her immune suppressant medication. This stinks because it's twice the amount of immune suppressants. A week later they turned up her dose a even little more than that. I just figured out the other day that she has not been on this high of a dose since she first started taking this med when she was 2 (a different immune suppressant was used before that). We once again have to worry about her picking up every little virus floating around. Since then she picked up a strep skin infection, a summer cold, her eczema is back full force, and she seems to have an ear infection now that I'm taking her to the pediatrician tomorow.

Once again, all of her blood work looks perfect! Nobody understands why nothing shows up in her labs and only in her biopsy's. We talked to the doctor and expressed our concerns that this might be something else but she assured us that it was rejection, the biopsy did not show any liver damage, and we'll just continue to monitor. Another biopsy will be repeated in 6 months and labs still every 2 weeks until her medication level stays where they need it to be to control this rejection and to keep an eye on her liver numbers. I feel like we are where we were a year out of her transplant and that is a hard place to be right now.

Tuesday, June 16, 2009

Sitting here at Children's


I'm just sitting here in the surgical observation area, watching Anna and Jason sleep. We woke up at 4:30 this morning so they are pooped. I on the other hand, I guess I'm just used to waking up early. On a normal work day I am already up for for an hour and a half by that time.

Anna went in for her biopsy by eight this morning, done by 8:15am, and it is now 10:00am. She did so well, as usual. I was a little worried because she was a bit nervous this time around. Her nervousness really surprised me because she is usually so nonchalant about this stuff. I guess she is just getting older and more aware of what is happening and why. Before it was all fun stuff because she gets spoiled here.

Dr. Ekong came out after the procedure, said everything went fine, and was on her way to do a biopsy on this tiny little baby that was waiting in the holding area. The mommy handed the baby off with tears in her eyes. Being here brings back memories of Anna when she was that little and how scared we were for her. I wanted to go over to that mom and give her a hug, and tell her it would all be OK. It feels like just yesterday when Jason and I were in those parents' position. I also remember that there is nothing you can say that would comfort those parents. The only thing would be for the doctor to come out and say that it was all a big mistake, your child does not have a liver disease, she is perfectly healthy!

So Anyway, Dr. Ekong let us know that she was not going to put a rush on looking at the biopsy because she doesn't anticipate anything showing up especially with her labs from Sunday looking so good. When she left Jason and I discussed how very silly that sounded to us. Didn't she say that last time? Her labs did look perfect, but there were still signs of rejection in her biopsy. It's not that I want her to put a rush on it because Anna is not showing any symptoms of any sort, it just sounded silly the way she put it. A few days is nothing, and I'll bet everything is fine.

So, here we sit until 2:00 this afternoon, and they had better let us go right away! I'll go nuts just sitting her. I don't know how I did this for weeks at a time.

Saturday, May 16, 2009

Ballet rectial

Alex did so well in her dance recital today! I actually had to get this video from her dress rehearsal from the night before because we weren't allowed to take video at her actual recital. She looked so cute and did very well for her first time!

Alex is the one in the middle with the extremely long hair!

video


And some more pictures!




Tuesday, May 05, 2009

Don't they look cute as.....

Anna as a walrus.............





Mary as a tiger..............





Alex as a monkey..............





Jason as a bat................






If you haven't guessed it already, we went to the zoo last weekend for the last time before our membership expires. I don't think we will be getting another membership this year because we have had one every year for the past three years and it's getting a little old. We always love the zoo, but you get a little burnt out on it and to tell you the truth I don't think we'll really use it this year. I might be getting a full time position at the hospital that I work part time at right now, and it will be hard enough to get pool time let alone enough visits to the zoo to make a membership worthwhile.

So, sorry all you Mumbles that we visit at every trip to the zoo, but we will see you next year!


Tuesday, April 28, 2009

Just a little inside joke guys!


To my lovely brother-in-law.

You know I love ya!

Friday, April 10, 2009

Hey all!

Sorry it's been so long. Ok, I know, I know, I seem to always update starting out that way. I doubt anybody even visits here anymore, so if you have patience with me, thank you so much!

I am finding it hard to balance my time between kids, housework, school, and getting those naps in during the day (which is absolutely necessary when you get up at 3 in the morning for work, and can't get to bet until 10 or later depending on when the kids finally get to sleep). I rarely get to sit down to do anything more than check my e-mail, online banking and a quick check on some blogs that I like to visit. I don't have the time to comment, or write e-mails so I am sorry for that too.

A few things have happened this month. First of all, Alexandria celebrated her 4th birthday! I can't believe she is four already! Gosh, time flies! In events ot come, Alexandria has her first dance recital in May! Can't wait to post pictures of that one! I love first dance recital pictures!


Then:






Now:







Next, Mary started her first year of softball. She has done baseball in the past, I want to say in first and second grade, but not since then. I think she was kind of in between wanting to keep going with baseball, but not sure how the boys would be as they get older (probably not that great of an idea, when they are little it's fine but they can start really not liking having a girl on their team after that) and wanting to try softball, but she wasn't sure how different it would be and I don't think she likes the competition with other girls! So anyway, she finally decided she wanted to go for softball this year and she really is very good. These other girls on her team are no better than her, which Mary was afraid of because most of them have been playing since T-ball without a break. I think her experience with baseball (and the fact that Jason always plays catch and takes her to batting cages) really helped her and she will be just as good (or better) than the other girls on her team. Plus, she seemed to really hit it off with these girls and I think she will have an awesome season with lots of fun!






Then:







Now:






And last, but not least, Anna is thriving in the new gymnastics facility where she is taking classes. For a while we had her in classes at out park district building, but the room was so small that she could not advance any further. This is a bit more expensive, but so worth it! Anna looks forward to going every week and the class is long enough to where it seems like they have more of a chance to work on tricks they learn that day where as at the other place it seemed that they would have time to learn something, maybe try it a few times, then it was time to leave and by the next class all is forgotten. So anyway she was started in beginners 2 only because she needed to "clean up" her tricks. They are more strict here with how they want things done but not harsh on them, which I like. So, during spring break they had what they call Flip Flop clinic where they concentrate only on how to do a flip flop (translation: back flip using your hands). We signed Anna up with the intention of getting her familiar with how it done and to get a feel for it because in the Advanced beginners class (the next level up which she will be in next session)this is where they start to learn to do it. Well, in one hour, Anna learned to do it! She can do a flip flop! I never would have imagined she would learn that so fast, and neither did anyone else. I could tell how impressed the coaches and other mothers where. I am so mad I did not have my camera with me to take a video of it. I wasn't able to go to the last class either because I was in the ER with strep, and she can't do it yet at home without a large padded mat (I won't let her, she probably would if I let her). I promise to take a video when we go again, I promise!





And here is a photo of Anna, just because I posted pictures of the other girls!













Look for updates on Easter, and our First Cubs game outing of the season.......Eventually!







HAPPY EASTER EVERYBODY!

Friday, March 13, 2009

Locks of love

Out of the kindness of her heart, Anna decided to cut a couple more inches off her hair than she was going to, so that there would be enough for her to be able to donate hair to locks of love! It was such a sweet thing to do, Mary did it too last year! Anna's reasoning for this..."I know what it's like to be sick and sad."

Thursday, March 05, 2009

Happy 7 year transplant anniversary Anna!


Seven years already! We celebrated Anna's anniversary last night by going to TGI Fridays as we do every year. We make a big deal out of her anniversary every year, we treat it kind of like a birthday party. Well, it's like a re-birthday party! Anna gets presents too, and this year since she's a big shot gymnast now, she asked for a new, good, leotard. I guess the ones she has is just not good enough now that she is in an academy and all the girls wear really good leotards. In my mind 35 dollars is a bit much for such a small piece of fabric but after I purchased it I could see how much nicer it is than the ones she has and it will probably last longer too. If you have time, take another look at the Anniversary video on the right side of this screen. I made it last year but it still a great reminder of how far Anna has come!



Alex and I also made Anna a cake, Alex put the sprinkles on! Also Notice the spelling of Anniversary!



Also, today I made some cupcakes for Anna's class at school. I am getting ready to bring them in. Supposedly Anna is going to tell the class about what the green ribbons mean. That would be great, but is she doesn't they still just look pretty!

Sunday, February 15, 2009

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!


Tuesday, February 03, 2009

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!


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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Update~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

Thursday, January 22, 2009

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!

Tuesday, January 20, 2009

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.