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Janna's Journey

Welcome to Janna's journey. This website is created to keep family and friends updated about Janna and her health.

Janna is three years old (January 2004) and eighteen months post transplant. She is talking from the moment she wakes up until she goes to bed. She attends preschool one afternoon a week and swim lessons twice a week. She can sing the alphabet and many nursery rhymes and knows her numbers to 12. She can say her full name, knows she is a girl and the most important fact, her birthdate. She loves to read, paint and draw and follow her big sister, Malina (4 ˝ yrs. old) wherever she goes. She is an active on-the-go girl. She will be our family comedian. She is a happy and loving child. You would never know that she had ever been sick once you meet her.

Janna had biliary atresia. It was diagnosed when she was eight weeks old. Biliary atresia is a rare and life threatening liver disease affecting about 250 infants a year. Biliary atresia is the withering or absence of ducts that drain bile from the liver. Since bile cannot flow normally, it backs up in the liver, causing cirrhosis. She was hospitalized eight times before her transplant and was taking eighteen doses of medicine a day, but you would never know that she was so sick. She was such a happy girl. We have learned so much about this horrible disease. We are hopeful that through more research, it can be prevented or at least diagnosed early enough to avoid liver damage and a liver transplant.

In August of 2005, JANNA RECEIVED A LIVER AND RENEWED HEALTH FROM AN ANGEL DONOR!! She was on the transplant list a short six weeks. She was almost nineteen months old at the time. Her surgery was 3 ˝ hours long. She was out of hospital in six days, but she had to stay in the Omaha area five weeks before she was released to go home. Her donor was a nine month old boy, Jonathan, who had down’s syndrome and had severe respiratory issues. His mother, Amber, made the selfless decision to donate all his organs. We are forever grateful for Janna’s gift of life!! We hope to be able to meet Amber and express our gratitude in person. The only medicine Janna takes now is her anti-rejection capsule twice a day. She has lab draws at least once a month. Rejection will always be an issue, along with various other issues that may arise.

In December 2005, Janna was diagnosed with food allergies. The only treatment is to avoid the food allergen. She has to avoid eggs, all nuts, wheat, all dairy, soy, bananas, red food dye and all legumes (peas, beans). She will be retested every six months. We carry an Epipen and Benadryl wherever we go in case of a reaction. The allergist is hoping that she will grow out of most if not all of the food allergies. We are learning every day about allergies.

We were so lucky that Janna only waited six weeks for her liver. There are over 90,000 people on the transplant list waiting for an organ. If you are not already an organ donor, please consider becoming one. You can make a difference in the lives of those that are waiting...and someday it could be a little girl like Janna whom you help!

Journal

Thursday, July 31, 2008 10:22 PM CDT

Well, I won’t even say the obvious…YES, I know it has been a long, LONG time since I posted an updated. My apologies. So, here is all the news from the past five months.

Janna’s labs have been stable and her liver is happy. She is still taking her maintenance meds for her eosinophilic gastroenteritis, Atarax and Singulair and just prograf for her liver. Other than that, she has had no episodes of that issue flaring since the diagnosis last summer.

We did get resolution on the back pain issue. After the x-rays, bone scan and ˝ hour MRI in April, nothing was found. We were then sent to physical therapy and they found something! She had a short and tight ileosecal muscle in the left front hip that would radiate to her left lower back. He gave us three exercises to do at home and it has been much better. Hooray for relief from that awful debilitating back pain. Janna suffered for more than a year off and on with back pain.

Janna finished the school year with no real issues. She had a good year with very few illnesses, which was surprising. She will have another year of preschool before kindergarten at Montessori.
This summer she and Malina are attending Discovery a few days a week and staying home a few days a week, by request. Malina was the one who asked if they could stay home a few days a week. A novel idea after the summer had already started, but I found “Miss Rachel”, whom they really love. They are also attending Camp Shalom in the mornings for two weeks too. The mermaids are still taking swim lessons and in the summer it is a grueling schedule—four days week! Malina is now in level six, next step for her is a swim team. She is a fast swimmer. It will be fun to watch her on a swim team, when the time comes. Janna is in level 4a. Her backstroke is awesome! They were out of lessons for a whole month while we were out of town! That is the longest time off for them!

The big news for the month was our 2500 mile van trip to Pittsburgh, PA to attend the Transplant Games and Scott’s hometown. We left home on July 8th and returned home on midnight July 17th. We attended some of the Transplant events and saw friends and family. Janna was in the 25 meter freestyle swimming event. After making 10-12 laps in the practice pool, she didn’t want to swim in the much colder and bigger pool when it came time to swim. No coaxing and bribing could convince her. She did better in the 25 meter dash, but I forgot to tell her about the gun that was used to start the race. So, after being a little startled at the start and needing some coaxing to get moving, she finally made it to the finish line. Scott reported that she was crying the last 10 meters of the race. She ran into his arms and both of them were crying at the finish. Next time she wants some ear plugs. She was supposed to bowl, but it was a 45 minute plus drive to get there-IF there was light traffic and it was in the opposite direction of leaving town, so we opted not to bowl. She would have loved it. It was a very inspiring experience and we are already looking forward to the 2010 games. It is good to be home after such a long car trip and the girls even made it home with some spare change! The idea of giving them a roll of coins and having them surrender one each time they asked “are we there yet” worked great. It took Malina only a few coins to stop and Janna by the seond day would only say “it is a long, long way there”. Only one coin was lost the whole way home!

We did make a stop at the Great Wolf Lodge in Mason, Ohio, on our way to Pittsburgh. It was a lot larger and had more fun than the one in KC, but, of course, we just couldn’t stay long enough to suit the girls.

It was great getting to meet family and friends while in Pittsburgh. The girls were so sad to have to leave Pittsburgh and all the newly found cousins. They had a lot of fun. Malina wants to start violin lessons and wants a Wii and Janna wants voice lessons. Howie and Joanne and family were great hosts to a family reunion. Thanks for all you did to put it all together and to host it at your home. Also, thanks to Nick and Rosann for their hospitality. They fed us two great meals at their family restaurant, Juliano’s. If you are ever in Pittsburgh, stop there. It is really great Italian food! There just wasn’t enough time for the kids to play though. Scott took us to see his home in Pittsburgh and where he went to elementary, high school and college. We also visited his uncle Melvin and Aunt Dede while we were there. The girls enjoyed playing with their cats. It was just too short of a visit.

We took the high road home and stopped in Omaha for Janna’s annual transplant clinic. After a long wait of two hours, we finally saw the doctor. It was actually Dr. Sudan, the surgeon who performed Janna’s transplant. Janna gave her a big hug before we let. Janna has some issue going on with her spleen right now. Her pediatrician was able to feel it (and you shouldn’t be able to) last month. Dr. Sudan could also feel it. So, she will have an ultrasound to check the size of the spleen and look at the flow going in and out of the portal vein in the next few weeks. She will also have some additional labs run this week to check to see if she is EBV positive (mono). This is a concern in transplant kids, because it can turn to PTLD, which is a form of cancer, if the levels get high. So, poor Janna will endure another lab draw this coming week. The ultrasound will just be something new to her since she hasn’t had one since transplant. We are hoping it turns out to be nothing. She did have severe splenomegaly before transplant (spleen was 12 cm) so it was amazing that her spleen diminished so rapidly. I will report more when we know more. Prayers would be appreciated. The good news is that she will transition to labs every two months from now on!!

Janna is approaching her THREE year transplant anniversary on August 8th. We will celebrate the day and release balloons to her angel in heave, Jonathan. We have had no contact since right after her transplant, but still send letters to his mother hoping to hear from her. Again, we feel lucky to have heard from her at all.

Before embarking on our trip, the Wichita Eagle did a story on Janna and the Transplant Games. It was featured the day we left town, so we did get to read it before our trip. Then, one of our local TV station, reported on Janna’s training for the games and featured it while we were gone. They did send us a copy and the girls watched it about ten times. We are trying to get the word out on organ donation. Even if one person becomes an organ donor, it is worth it.

Scott is still at Boeing and hoping that Boeing gets the tanker bid so he can still work on “his airplane” as the girls call it. I am still at work, still wishing it was a part-time job and it isn’t. I take work home most nights and don’t get enough sleep. I hope to fix that problem soon.

The sad news to report is that my mother was diagnosed with a stage 4 liver disease, NASH, a fatty liver, (totally unrelated to Janna’s) in April. There is no cure, just diet and exercise. They are even talking about transplant and are starting to score her, but she has told us that she will not have the surgery. She thinks she is too old at 68!!


We did have some family photos taken in June. I hope to be able to learn how to post them on this site. I hate to say that her opening photo is her THREE year old picture…she is now 4 ˝, yikes!

Say a prayer for all the children in the hospital and waiting for an organ. There are just too many. Over 100,000 are on the list, with 18 dying each day on the list waiting.

PS…this is bad when I haven’t posted an update and I already have an update. (That's what I get for waiting for Scott to "help" with the website...two weeks is long enough to wait!) Janna had her ultrasound the Tuesday we got back to Wichita. The results show a slightly enlarged LIVER and spleen. Her spleen is 11.5 cm. It was 12 cm at transplant. The issue is that they have not been able to feel it in years, so why now. Her EBV./mono labs were on Wednesday. They came back negative. So, we are waiting to hear back from Omaha as to the next step. I will post when I have more news.








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Univ. of Nebraska Medical Center
987600 Nebraska Medical Center
Omaha, NE 68198-7600
402-559-

Links:

http://classkids.org   pediatric liver forum


 
 

E-mail Author: tmwagner@cox.net

 
 

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