History

Saturday, February 2, 2008 2:21 PM CST

Well, Miss Janna turned FOUR on January 15th!! I can't believe our baby is FOUR! That reminds me that her picture here is a year old. I guess I need to post an updated picture, huh! I have a new MacBook and I just don't know how to do it and don't want to take the time, but I will get it done. She invited "girls only" to a Pump-It-Up Party. The fifteen girls and big sister, Malina, had a blast and most were sweating and waiting for the treats way ahead of time.

Janna had her labs on her birthday...yes, I know, bad mother, but it works so well to go on the Tuesday nearest the 15th. Other than her white count being low, her labs were great. She will have her allergy testing (RAST) done with her February labs, since she has her annual visit with the allergist in March. I am so hopeful she will get some foods back. I may be disappointed.

The girls missed a few days of school last week with head colds, congestion and coughing. The teacher said the coughing was so bad, they would have to stop teaching at times. Hopefully everyone is on the mend, but the germs are everywhere this time of year.

Malina and Janna are still swimming two days a week. They are both progressing. Malina has one more level and she will be at the top. Janna just moved into level 4a. They are both fish!

They both love Montessori. Malina is busy with her reading homework and spelling tests each week. Janna is the social director. She nows who is sick and who left early and all the happenings at school. We have school conferences in two weeks, so I am sure we will get the scoop.

We have had[ plenty of snow this year and the girls have been enjoying it. Where is spring! Scott is approaching the big 5-0 this year and is dreading it every day. Oh, speaking of that, I will be another year older in a month, but not quite 50!

We are excited to be planning a trip back to Scott's hometown in Pittsburgh, PA in July for the transplant games. Janna will be a member of the Mo-Kan Team. We will take our time and drive, stopping in St. Louis to see relatives and taking in a Great Wolf Lodge (indoor water park) in Ohio on our way. It will be great to spend time with Scott's relatives and friends.

Say a special prayer for all the sick kids and people waiting for a living saving transplant. Remember, organ donation saves lives...

Thursday, January 3, 2008 11:31 PM CST

Oh yes, I am behind again. This working is the pits. Something has to give time wise. Well, Janna's labs on December 17th were good. Another month with a happy liver! We will take that any time! Her white count is still low, but no one seems to be concerned.

Janna will have her monthly labs on her birthday this month. Yes, on January 15th, Janna will be FOUR years old! She is so excited about having a birthday party with her friends from school. She decided she wanted to celebrate at Pump it Up, but only invite girls to her party. So, 18 girls it is!! Oh yes, she has some that only go in the morning or afternoon, so there are quite a few. You just can't leave some of them out. Janna is quite the social butterfly. She is such a compassionate child. She is truly amazing. There is a hug for everyone!

Well, the poor girl has had such a cough these past ten days. She went in to be checked the day after Christmas for pneumonia, and she was clear. Then on New Years Day, she started running a fever. So, I spent New Years Day on the phone trying to get some advice and then at the local urgent care facility. We try to stay away from the emergency room if at all possible. We got in and out with an ear infection. So, she is now on Amoxicillin for ten days. Today is the first day her cough is better and she hasn't slept for 2-3 hours in our lap. She was really feeling bad. So, hopefully by the time school starts again on Monday, she will be ready to go full steam!

Malina is so ready for school to start again. They have been out of school two weeks. Luckily swim lessons started again this week. Malina really likes school and the routine of it all. She did take a morning art class last week. She just loves to write and draw. She is a natural. She, unlike Janna, would invite all the boys to her birthday party. She did mention ONE girl that she wanted to invite!

Scott is starting his MBA classes again on Monday nights. So, we will see him less in the coming days. We sure liked having him around during the holidays.

We are gearing up to attend the Transplant Games in Scott's hometown, Pittsburgh, PA in July. We will have to get Janna in shape! Everyone who has participated in the Games has said nothing but good things about it. We are excited. We will get to meet a lot of liver families we "know" from on-line AND get to see some cousins and friends in the Pittsburgh area as well. Scott has the route all mapped out. Stay tuned for more details.

I will try to get the updates out as I get the labs back. Now that I have a new MacBookPro, it is much faster and easier to get on-line than before.

I hope everyone has a healthy and happy New Year!

Sunday, December 9, 2007 11:48 AM CST

So sorry for such a lag in keeping Janna’s website current. She had her lab drawn on November 13th and all was well. Her white count is still low, hanging out at 3.8, but she has had a cold and runny nose lately. Her prograf level was fine after the dose was increased last month.

The current problem is that she is having intermittent back pain. It has been happening since April-May. It started after a birthday party where she was jumping on a trampoline and in a “bounce house”. Since then she has had back pain off and on, mostly in the same spot and she acts as if it is really painful. One day it was off and on for an hour. Other days it is at bedtime, during swim lessons…there is no rhyme or reason to it. Right before Thanksgiving the pain was twice in 2-3 days, so I took her to the pediatrician. Of course, I had done some reading and found that abdominal and back pain is a rare side effect of her anti-rejection med. So, after talking to her pediatrician about a game plan, I told him about my reading. He said he would try to get to the bottom of it and if there was no known cause, we may have to settle for the side effect answer.

She had x-rays of her back the Wednesday before Thanksgiving. She is so good during lab draws, but I couldn’t convince her that the huge machines were not going to hurt, plus she had to take off her pants and shirt. It took an hour to get the two x-rays. They found nothing. Monday she had a bone scan at the local hospital. Well, after three phlebotomists, four pokes and almost two hours, they got the IV in! They pushed 1cc of contrast in for the bone scan and took it immediately out! It was in for less than a minute. I told them there has to be a better way to do this!! She was back two hours later for the scan. The results received this week were normal. Our next step is to see a pediatric orthopedic doctor. The problem is that she sees new patients for one day every TWO MONTHS! Since we started on this journey, she has had one very mild episode of back pain. So, I will make the appointment and wait the two months!

We are in the midst of Hanukkah. It has been so hard to get the girls to school this week. They want to play with their toys before school. Their last day of school is December 21st. They don’t go back until January 7th. Scott is off from the 21st through January 2nd, so it will be a nice break. I will work during the break because the Courthouse is open and there are always clients that have some work they want to complete before the end of the year. We do have a trip to the Great Wolf Lodge in Kansas City the weekend after January 1st since our last trip was cancelled because Malina got sick.

Janna’s next lab draw is right around the corner…January 17th. We hold our breath each month because we know our world can be turned upside down with the next lab report. In fact, last year Janna’s labs went up for some unknown reason during December and we were on high alert. We are hoping for a more peaceful December this year.

Happy Holidays to all our friends and family. May there be peace, health and happiness in your New Year and always!

Saturday, October 20, 2007 4:31 PM CDT

As a side note from last month, they did increase Janna’s dose of prograf (anti-rejection med) after two lab draws that came back undetectable. She is back up to 1mg twice a day. I hate it because her liver enzymes look good and the fact that any increase in prograf can start to mess with her food allergies. Oh well, I am not the one calling the shots. I am just the mother and what do I know!

Janna had labs drawn on Monday for her monthly lab draw. She told me on the way that she was going to be a big girl again and not cry. She did not even whince. What a big, brave girl she is. The labs came back pretty good. Her white count is back up, but still not in the normal range. I don’t think it has been in the normal range but for a few times in her life. Right now she has the perpetual runny/crusty nose. So, back to monthly lab draws. She and Malina did get the flu shot earlier this month. Yes, even though both of them are allergic to eggs, they can tolerate the shot. We stay in the doctor’s office at least thirty minutes just to make sure. Janna did see Dr, Daniel this past Thursday. He is the GI from Children’s Mercy and the same one that did her GI scope and colonoscopy in June. He thought she was doing really well. No reason to see him again for six months unless something comes up. She is still taking Singulair at night and Atarax three times a day. I hate meds, but I guess they are necessary.

I have been giving Janna some soy butter and other foods that have soy in it. She is able to tolerate the food with no problems. She has also had some string green beans, kidney and other beans without problems and knocking hard on wood. Dr. Daniel thought it would be fine to try some of the foods. Right now her EOS are almost in the normal range and below 500, so we will test away.

We have new student conferences on Monday for both Malina and Janna. Scott and I can’t wait to hear what they have to say. Janna’s swim instructor and one teacher both said the same thing…”she is independent and very self-sufficient”. So far the only call from the school came after Janna starting going full time to tell us that she was doing well and adjusted to the new surroundings quickly. To Janna, everyone is her “best friend” and he/she “loves me”…and how could they not!! Then she went on to say that Malina is very enamored with a little boy, Benjamin. I did remember Malina talking about him and telling me she was going to marry him in high school. Well, the teacher told me that they have had to separate them in line and at school. They are always standing in line with their arms around each other and Malina is known for her bear hugs. So, I sure hope she gets this boy craze out of her system and it stays away until she is thirty! I guess there could be worse problems at school than this!

The girls are still in swim lessons. They go twice a week for half an hour. They still like it. Malina is in level 4b and Janna is in level 3. They are both fish. Speaking of fish, we are taking them back to their favorite place, The Great Wolf Lodge in Kansas City in a couple of weeks. We have a four day weekend coming up and we are going to take advantage of it. I am sure there will be a pile of work on my desk when I return! Oh well, job security I guess.

Scott is only taking one class this block, Economics. Of course, he has all A’s on all classes he has taken so far. It was just too much to take two classes each block. We never saw him and when we did, he had to study. Then in the middle of all his finals, the congregation asks him to be president for two years. He had to turn it down since he has not made a meeting all month until this month due to his class schedule.

I am in full swing at the office. There is no such thing as parttime. I just take it home and work when the kids go to bed. Who needs sleep! I like being back, but there are days that I wonder why I wanted to have all this stress again when I could be foot loose and fancy free while both girls are in school, but that’s not me. I did drive to Janna’s field trip to the pumpkin patch. I will drive to Malina’s this coming week. Scott will be out of town in Nashville this coming week. He hasn’t been gone in a while, so we will have to adjust again. It is the hardest at night when they are used to one of us reading to each of them.

Remember Janna’s gift and the selfless act of the mother, Amber, and her son, Jonathon who is an angel in heaven. Organ donation saves lives and Janna is living proof of that. Janna will tell you that her liver was sick, point to her scar and tell you that the doctor put a new liver in there. She is the best spokesperson for organ donation. Keep praying for all those so sick and waiting for their gift!

Saturday, September 22, 2007 3:02 PM CDT

Janna had her monthly lab draw on Monday. Her labs were fine EXCEPT her prograf level was undetectable and her white count was low at 2.8. So, the poor girl has to repeat labs this coming week only to check her prograf level. I will wait to tell her until we are going that morning. She was such a trooper this time too. The girls didn't have school and Scott was staying home with them. So, Janna and I went by ourselves. On the way Janna told me that she wasn't going to cry today. She jumped on my lap at the doctor, stuck her arm out and never flinched! She was so brave. I just wish she wouldn't have to repeat labs so soon again. Oh well, we need to make sure her level of anti-rejection drug is enough to keep her liver happy.

The girls are both in Montessori school this year and enjoying every minute of it. They are in the same room since there is no partition between pre-K and the kindergarten kids. It is hard to believe they are both in school and I am back to work. I didn't think that day would come so fast.

Malina already has not just one, but two boyfriends already. Malina is already learning to write in cursive. She is also learning French. Janna is having a good time making all sorts of friends since she is in class all day. I spoke with her teacher and she told me that she was more than ready to attend all day. I do remember the first word she used to describe Janna. It was independent and boy she sure is right. I have heard "I can do it myself" more than a few times. They do miss having art everyday. At their last preschool, they did art almost everyday. This is more like "real" school and art is usually once a week. I am not yet used to all the parent functions and days out of school, but I am learning fast.

The girls are still in swim lessons twice a week after school. They really look forward to it. The girls were sad when the neighborhood pool closed last week. Fall is on its way, but it is still in the 90s most days. We are sure ready. We are trying to get a stone patio put in before fall is over so that we can buy a little outdoor fireplace and be able to enjoy it.

We still make it to the farm at least once a week. They sure enjoy it and being able to play with all the cousins is great fun too. We are taking a road trip (just us girls) with my mom next weekend. We are going to visit my brother and his family near Kansas City. We are going there next Friday to make it in time to "watch" my brother coach his football team. We will enjoy getting out of town since Scott has been studying so much and we are gone a lot on weekends to let him study in peace.

Scott is taking TWO MBA classes this block. He is sure busy. That means he is gone two nights a class and it seems like he is studying every other night. Of course, he is doing quite well in the classes.

Work is busy on my end. In fact, it is busies than I would like it for only being there 8-3. I end up taking a lot of work home and doing it after the kids are in bed. There is an attorney out in a trial until April!! So, I have her case load as well as supervising a brand spanking new attorney who just passed the bar. Oh well, I guess it is job security.

We are hoping to take a family trip the first part of November since the girls are out two days for conferences. We have a four day weekend and want to get back to the Great Wolf Lodge. The girls don't want to go anywhere else!

Thanks for checking in on us. I used to update so often and now it is just once a month when her labs are drawn. I guess that is good in a way...because it means nothing medical is going on. She did get to stop one of her meds, so she is down to two in the morning, one midday and three at night. We will keep our fingers crossed for her drug level to be back in range. I don't want to have it increased with all her food allergy issues. It can make the situation even worse.

Prayers to all our liver friends and their families who are in need of prayers and support. The road is full of bumps and turns along the way. Remember the importance of organ donation.

Monday, August 6, 2007 8:25 PM CDT

We are back from our round-trip doctor visits. First, we went to Omaha for Janna’s annual liver transplant checkup. We left in the morning and made it to her 3:00pm appointment in good time. We saw Dr. Langnas, who is the head surgeon on the transplant team. He gave us all the time we needed. He was happy with Janna and her new liver, but had to admit that he doesn’t stay up on all the issues like food allergies that we wanted to talk about. At first he was reluctant to talk about any changes, but when he heard how many allergies she has AND her new diagnosis (eosinophilic gastroenteritis) he decided that maybe some changes should be looked at. He wanted us to get a second opinion on the treatment plan for the new diagnosis before we made any changes. We talked with him about the other anti-rejection drugs, but they all have their side effects. Janna had gained TWO pounds in the past month. She is up to 38 lbs. Now she just needs to start growing taller along with it. We checked into the hotel and let the girls swim after dinner.

The Transplant Reunion was Saturday. The girls and Scott had a great time playing the carnival-type games for most of the 2 ½ hours. I spent the time in the educational seminars. Prograf, her anti-rejection drug is being formulated into a once a day dosing time release capsule. It is highly unlikely that this will help Janna’s condition, but heck, we will take a once a day pill instead of twice a day. There is a once a month shot coming out in a couple of years that really peaked my interest. It may be the drug that helps Janna and her food allergies, plus, it is better for the kidneys too. It is still in the study phase, but at least it is out there. We had lunch at the reunion, saw a couple of the transplant nurses and a family we know from Lawrence. Janna did not want her picture taken with the pediatric group, so she had her picture taken separately to add to the group shot. Then we went to the Omaha Children’s Museum and couldn’t get the girls to leave until they closed. They loved it. By then, it was raining and too late to go to the Zoo. So we went back and watched a movie at the hotel.

Sunday we traveled to Kansas City. We stopped near St. Joseph, Missouri and had lunch with uncle Steve, Aunt Natalie and cousin, Tia. It was great to see them and be able to stretch our legs. The next stop was the most anticipated of the whole trip….The Great Wolf Lodge. Malina has been marking the days off the calendar until we left for this trip! It is the best indoor water park. The girls had a blast. Janna would get her fill of it, but not Malina. I think she would have stayed all day and never got out if we didn’t make her. She is such a fish. On Monday night, we had dinner at the T-Rex Cafe and met another liver family from KC there. It was great to sit and talk about, well you know, liver issues and our kids. They had just gotten back from a trip to St. Louis, so the kids were anxious to get home, so it was a short visit.

Malina was sad to say goodbye to the Great Wolf Lodge on Tuesday. Of course, by then her hair was so brittle from all the chlorine. We made a side trip to Children’s Mercy to see Dr. Daniel on Tuesday morning. If we didn’t, he couldn’t see us in Wichita until October. He gave us all the time we needed and together we decided on a treatment plan for Janna. Since the three maintenance meds stopped the bleeding with no other invention, we will change nothing at this time, other than to reduce the Flovent to once a day and then if no problems in thirty days, then stop the Flovent completely. It was decided to go further into treatment if she has other problems or starts to bleed and it doesn’t stop. There is a slim chance that she will grow out of the food allergies, however slim, but since her liver is so stable and her food allergies are manageable (yeah, right, just don’t eat these EIGHT food groups) as long as she avoids the food, we are fine to keep her on the prograf and just deal with the avoidance. Yes, it could be worse, but it could be better too. We are fine with the decision because there is not just a good and convincing change to her meds without more risks. Right now no one will advise us that Janna should have these risks. She will still have monthly lab draws and we will see Dr. Daniel in Wichita in October.

We arrived home Tuesday evening in time to get the girls’ favorite meal…Freddy’s. It is a hamburger and fries kind of place and Janna can eat the hamburger or hot dog without the bun and have the fries as well. So, she loves it!

So, Wednesday was back to work for Scott and I and back to the summer program for the girls. The girls are finally at the same place all day, so I have a lunch hour again. I had forgotten what it was like. Now I actually get more work done too! By the way, Scott did get an “A” on his class. Now he is set to start another semester next Monday.

The big celebration this week will be Janna’s SECOND transplant anniversary. It is hard to believe it has been two years already. We have a card ready to send to Amber, the donor mother, in honor of her decision to donate her son, Jonathon’s organs. We haven’t heard from her since her first letter back in March of 2006, so we hope to get an update on her. The girls are going to wear their organ donation shirts to school on Wednesday, August 8th, which is Janna’s transplant date. We will also release balloons in honor of Jonathon and all angel donors. We will have our own celebration and honor Jonathon and his mother, Amber. We are so lucky to know their story and have pictures of them.

The Martins have added another one to the planet. My niece gave birth last week to baby Mia Ann. To keep things moving, my sister-in-law, Natalie, is pregnant and due in March.

Please keep all sick kids in your prayers. Matthew and his family still need our prayers and there are so many others. Scott’s boss just lost his son in a canoeing accident. Give your kids an extra hug today. And as I always close, please remember that organ donation saves lives….there are now over 95,000 on the waiting list for a life saving organ! That’s too many! Enjoy the rest of the summer!

Tuesday, July 24, 2007 11:03 PM CDT

Janna had her monthly lab draw on July 16th. It was pretty good. Her EOS (type of white blood cell that attacks foreign matter) is super high for her, which tells me that we still need to avoid all her allergy triggers, including soy and red food dye that she got back in late March. She is feeling well and there has been no visible blood in her stools since shortly after her colonoscopy and upper GI scope. The GI in Kansas City did add three meds to help with the issue and Janna is adjusting to taking them. First it was a fight to take the Atarax since it has a minty flavor. Now she just opens up and swallows it.

We are still waiting to hear a plan of action, other than Omaha does NOT agree to try Rapamune, a different anti-rejection drug, by itself. They will agree to try cyclosplorine, which both Scott and I don’t want to try because there is no study that has proven that it will help reduce the food allergies. The conference call with the two docs was scheduled, but an emergency came up and they haven’t been able to connect. Of course, the GI in KC was on vacation last week and this week too. So, we will wait. We leave Friday for Omaha for Janna’s TWO year checkup. We will wait and see what they mention about her new diagnosis at the checkup. We will stay Friday and Saturday and attend the Transplant Reunion. Yes, of course, the hotel has a swimming pool. I did ask not to put us on the same level and not near it though. Then Sunday we will travel to KC, which is just about halfway. We hope to have lunch with Uncle Steve, Aunt Natalie and Tia near St. Joseph, MO. Then we head to the Great Wolf Lodge. The girls can’t wait. They remember it like it was yesterday when we were last there in April. We hope to eat with a liver friend family in the KC area at the T-Rex Café. We are working out the details. We see them when we come to KC for American Liver Foundation events. It would be great to see them too. On Tuesday, Janna will see Dr. Daniel at Children’s Mercy. We want to talk with him in person about the biopsy results and new diagnosis. We have many questions and he has no Wichita appointments until October. That is just too long to wait. So, we will interrupt our vacation to see him. Then home again.

Whew, the summer has been busy. I have to remind myself that it was I that wanted to return to work. For the first seven weeks of summer, three days a week, I would drop the girls off at their summer program, go to work for a couple of hours, go back to pick them up at noon, eat in the car with them and then take them to their afternoon program. NOW, I actually have a lunch hour!! For the next four weeks, they are in the same program all day. I take Janna’s lunch and she eats it with her friends. Malina will start eating at the preschool this week…she has been sick with a summer cold that turned to asthma the past two days. Just when she was looking forward to going to the same program all day and eating lunch with her friends, she gets sick. So Scott stayed home yesterday and I did today.

I did a trial experiment with Janna to see what her reaction would be when Malina would go to school all day and Janna would come home with me half a day. Well, suffice it to say that it did not go well. Remember she is three and a half and the terrible 3’s are worse than the terrible 2’s. So, I called and then had an opening to put her in all week. So she will go to Discovery Place in the morning and Montessori in the afternoon. Malina will be in Montessori all day. That means I HAVE to go to work EVERY day now, but I will pick them up at 3:00 when school is out and that will end my day.

They have both been in swim lessons since January. Malina is really progressing now. Janna is starting to fight us about going to lessons. During the school year, they go twice a week for half an hour. In the summer, they go four times a week for half an hour. Next week starts the last two-week session of the summer. Then the girls will have a two-week break from summer school and swim lessons. I say yippee, but I will have to find someone to come to the house those two weeks to watch them, drive them 30 minutes to Grandma’s house or work from home! What a choice!

The girls and I did have our summer slumber party at Grandma’s house. First we had a swim party at my sister’s pool and had to pry them out of the pool at 8:30pm. Malina won the award for staying up latest. She loves that TV that we don’t have! I made the mistake of telling Janna I would lay down with her and fell asleep on the floor. I am too old to sleep on the floor!! Everyone had a good time. Our trips to Grandma now occur on weekends since the girls have swim lessons in the late afternoon. Grandma is now realizing that she will see us less when school starts. The girls are growing up.

Scott just walked in from his first final in his MBA program. I think he got an A, but he says he will have to wait. He sure studied enough to get an A. So now he (and us girls) will have a break from the studying and being quiet for a couple of weeks before he starts the fall session and TWO classes.

I hope to get pictures update on this site. Janna’s front picture is from January and so are the others!! On the liver forum site, Janna’s picture is from last year’s liver transplant appointment LAST July!! I am really behind. The girls probably take more pictures than we do at this point. If you came to our house, you would think you were in an art gallery. There is artwork everywhere. All over the girls’ doors, the walls and anywhere they can reach to make the tape stick. They sure love art, especially painting. Malina can already draw better than me on a good day!

Say a prayer for all the sick kids. Say a special prayer for Matthew and his family who are struggling with his anxiety issues. Remember to support organ donation. There are over 90,000 people in the US alone waiting for an organ…and it could be you or your loved one some day!!

Sunday, July 1, 2007 0:43 AM CDT

Well, it has been a long weekend. We found out the biopsy news on Friday that they found eosinophils in both her esophagus and colon. About twice as many EOS in her colon than her esophagus. That explains the blood in her stools and why she has been have allergic reactions to her normal "safe" foods (6-7 in the past month). So, they put her on THREE new meds with he prograf: Flovent(2x), Singulair(1x) and Atarax(3x). The GI at Children's Mercy wants to switch her to a different anti-rejection drug, Rapamune, to try to relieve the food allergy problems. Apparently there is a study at some center on some young kids who developed food allergies post transplant that were switched to Rapamune and their food allergies disappeared. Two such successes were at Children's Mercy in KC (where Janna was scoped). Of course we are interested in this! Now we are waiting to hear from Omaha (her transplant team) to get their input. We have an appointment in Omaha on July 27th for her annual exam and transplant reunion, but I hope they will want to start something before then! Going from two doses of meds a day to eight is so depressing. Then the thought of switching her anti-rejection med is scary, but I feel like we have to try it. So, now we have to start a new routine since she has to take three of the drugs in the morning now, one at noon and four at night. We will adjust. Janna is such a trooper. She did say that she liked the Flovent puff of med when she did it the first time. She already doesn't like the Atarax. Of course, that is the one that she has to take three times a day. It has a minty taste.

For those non-liver readers: eosinophils are a type of white blood cell. They become active when you have certain allergic diseases, infections and other problems. She has been diagnosed with eosinophilic gastroenteritis. It is a rare disease (of course!) characterized by food-related reactions, infiltration of white blood cells (eosinophils) in the GI tract and an increase in number of eosinophils in the blood.

She also reacted to CORN!! It is low at class 2 and I am not going to eliminate it completely from her diet. I will just reduce the number of times she has it each week.

We will wait to hear from Omaha and hope that the two teams can get along to be able to care for Janna together. If not, we will go to Plan B. We will keep you posted.

Tuesday, June 26, 2007 11:46 PM CDT

They got Janna in at Children's Mercy in Kansas City for an EGD (upper scope) and colonoscopy on Tuesday. We will leave Sunday night since she has to start taking laxatives Monday morning starting at 8:00 am and since I don't know how fast the stuff works. She will see Dr. Daniel, the GI, at 11:30 and then anesthesia at 2:00pm. She will have nothing but clear liquids and laxatives all day Monday. After 9:30 am Tuesday, she can have NOTHING. Whew, I am not looking forward to that!!

Update: I am exhausted and glad to be home. I didn't take a computer with me for the trip because I knew I would be busy. The day of clear liquids and Miralax (laxative) was grueling with a 3 1/2 year old stubborn and independent little girl. They wanted her to drink 4oz of liquid with the laxative every hour on the hour for eight hours, plus six ounces of liquid on top of that!! Instead, I was only able to get seven doses down her from 8am to 9pm. So that means she was pooping at 3am this morning three times. Oh well, we got the job done. (If you don't know what I am talking about, you will have to read the prior post)

She was in a much worse mood this morning when she couldn't have her rice milk again and then having nothing to drink at all after 9:30. Thankfully her EGD (upper GI scope) and colonoscopy were at 1pm, so she was first in line. We had a little delay when she threw such a fit that she wouldn't even let them take her temp and such. They gave her versed (sedative) to calm her down. Whew, the last time we were in the hospital she was 18 months old. That was much easier.

The good news is that it is nothing major like cancer, polyps, colitis, etc. They did an upper scope for EOS (a different type of food allergy problem) and took some tissue to biopsy and tissue from the colon to biopsy. The doctor said that everything looked pretty good. The colon wall was thicker than normal and was dimpled and inflamed. The guess right now is that it could have been caused by being on Omnicef for two weeks and then Augenmentin for two weeks back-to-back to get rid of sinusitis. Another theory is her food allergies. Since she has been reacting more than usual, it is a possibility. There are cases of food allergies causing rectal bleeding. Some additional food labs were run on Monday and a special type of IgE that is new was run as well. It will be 10-14 days for results. The good thing is that her hemoglobin and hematocrit are in the high normal range. That needs to stay that way to keep from having a transfusion. The bad thing is that the bleeding may still continue without a known cause. We will just take it one step at a time.

The GI did discuss the possibility that Janna could benefit from switching her to a different anti-rejection drug. He had two kids that are involved in a study that were switched and their food allergies were gone in a matter of months. You know that interests me! Even if she would get rid of one or two allergies, that would be better than eight.

Janna slept almost the whole three hour drive home. She is a little sore on both ends though. We will have the biopsy results the end of this week. I am so glad it is over, but we still have some waiting and possibly more tests in the future. In the meantime, we will enjoy our time at home...and wait for more news.

We did get to meet three biliary atresia babies and their families while we were at Children's Mercy on Monday. Tyler is about seven months old from Missouri and is fighting some bouts of cholangitis like Janna did. Addison has been listed for transplant and needs her gift of life! Paul is a Nigerian baby who just had his Kasai surgery six weeks ago. So, this is all new to them. It was great to meet them, hear their stories and share Janna's story with them. It was like old times being back at Children's Mercy--but I don't want to make a habit of it. It has been two years since she was a patient there.

Monday, June 18, 2007 11:33 PM CDT

Janna had her lab draw last week. Yes, shame on me for not sharing it. I guess you know me by now that if the numbers were elevated, I would have posted before now. Well, the truth is that with working, I find less and less time to do the things that I normally did automatically. Janna’s numbers were good. Her white count hasn’t been this high in so long. I mean before transplant. It is in the normal range! Her liver enzymes are back to her normal. I guess her AST is going to hang out in the 40’s, which is in the high range for our lab, but not for Omaha. They don’t consider it high unless it is over 60. Her prograf level was even detectable! Yipee! The worst part was the actual lab draw. She was kicking and screaming and did I say kicking. I will have to remember to have her wear her crocs or slippers next time. Ouch!

I can’t say that she had a healthy month though. I was a little worried that the lab draw would come back elevated. Janna was seen for sinusitis shortly after her last lab draw. After two weeks of Omnicef and much coughing and getting up in the middle of the night, she had to take Augmentin for two weeks. Finally last week was her last dose of it. Her cough finally ended and she is back to sleeping through the night. The poor girl was coughing so hard in the middle of the night, it was waking her up. So, after a month of not sleeping through the night MOM is happy too! Then in the middle of all the antibiotics, Janna had such bad sores in her mouth, she would barely eat. So, of course, it was the weekend so off to ER. We were afraid it was CMV or herpes, which would have required some high powered drugs. Instead, she was diagnosed with viral stomatitis (mouth ulcers). The next morning she had sores on her hands and feet, so, you guessed it. She had the coxsackie virus (hand, foot and mouth disease). Nothing to do but let it run its course. She was uncomfortable the first day or so, but ornery as ever after that.
The latest problem is that she is having some blood in her stool. We are waiting on the culture, but so far everything is negative. The doctor thought for sure it was cdiff. So, we will wait and see. She just had labs and her red count and hemoglobin are high, so that is not a problem. I just want to know what it is and want it to stop!

The girls are enjoying going to preschool, all except the getting up in the morning. A few mornings Malina has thrown the cover over her head and told me she is too tired to get up yet! They are getting used to it and have been getting up before I have to wake them. Next week they start Camp Shalom and they won’t have to be there until 9am. They get to go to the Zoo, Pump It Up, bowling, swim and gym. They go somewhere on the bus at least 2-3 times a week. They are taking swim lessons Mon-Thur for half an hour. I take them right after school ends at 3pm.

Scott is not liking his first class for his MBA. It is accounting and it is kicking his butt. If he is awake and home, he is studying. He has a few business trips here and there this summer. Most of the time he leaves Wednesday morning and is back late Friday night. It is not as bad as the seven week trip that I can still remember like it was yesterday.

Work is keeping me busy. I am taking more work home than I would like, but I have to expect that until I get used to, or rather my brain gets used to working the files again and all the legal jargon again. It is great to see my old clients, new ones and have some real adult conversation. I was in the local Bar Show singing and dancing. It was a great way to get back into the practice, meet the new attorneys and see my attorney friends again. The bad part was that it involved practicing for six weeks on Mon-Thurs nights. Yes, Scott and the girls bonded!

We have plans to go to Omaha next month for Janna’s TWO year check-up! We will spend two nights in Omaha and see their great Zoo. Then, we are off to Kansas City to spend two nights at the Great Wolf Lodge. Yes, the girls loved it so much we are going back. It is on the way, so that will be our vacation for the summer.

Have a safe and fun summer. Remember to say a prayer for all the sick kids, especially those waiting for their gift of life. ORGAN DONATION SAVES LIVES!!!

Wednesday update: She had another bloody red stool. We saw a pediatrician and he did a rectal exam and did not find any hemorrhoids or anything to be concerned with. So, Janna will have to have an upper and lower scope to look for what is causing the bleeding. The doctor is thinking polyps or ulcerative colitis. We are waiting to hear from Children's Mercy in Kansas City for her appointment. I hate the waiting.....we will keep you updated.

Janna and I are leaving Sunday night to go to Kansas City for her scope. She will have anesthesia, so Monday we see Dr. Daniel, the GI and that afternoon, we see pre-anesthesia. Her scope is scheduled for Tuesday, June 26th at 2pm. We hope to find the cause for the bleeding and a simple fix. Monday will be a long day, as she has to take laxatives and be on clear liquids only. Tuesday will be no better with water only up to two hours before the scope. Scott will be staying home with Malina. Please keep Janna in your prayers.

Tuesday, May 22, 2007 0:29 AM CDT

Okay, okay, okay, I guess you know me well enough to know that if her labs were out of whack, I would have posted by now! Sorry!! Her liver enzymes are still coming down and almost back to “her” normal. Her white count is low again, but nothing to worry about. She has had a cough we are still trying to figure out, but otherwise, she is ornery as ever. She has been coughing really horribly at night for almost three weeks. I took her to the doctor last week and they are treating her for sinusitis. We go back tomorrow because she is not better after six days of antibiotic. My guess is that it is allergies, but mentioned that last time and what do I know! Her terrible threes are much worse than her twos were! Her AST is still a little high, but it is the lowest we have seen since last November right before her numbers made the first big rise!

The worst part was the lab draw. Janna usually whines a little on the way and then cries while they are drawing the blood and then stops right away. This time when I had to wake her up and tell her she needed to get ready to go, she simply put the covers over her head and told me she wasn’t going. Now, she meant it. I tried all sorts of tricks and bribes and nothing did it. I had to take her kicking and screaming to the car. You see we have a very limited window of time to get to the office to have the lab drawn. We have to be in the twelve hour window of the last dose of her anti-rejection med. There isn’t much time to negotiate, but she was trying. Malina tried to help along the way, but Janna wanted to hear none of it. I can’t blame her. It hurts and it stinks that she has to have it done monthly! She even fought once we were there. She turned to me and I had to really hold her down for this one! It was awful. Oh yeah, as I was backing out of the garage, she told me I was a “bad mama”. I had to agree!

The girls are finishing up their last week of school. They will have a week break and then back for summer school fun! Cousin Jill will watch them next week as I try to spend some time in the office with the partner who is retiring. We haven’t had a chance to sit down in the past six weeks. Their summer is full! They will go to Montessori orientation classes for three weeks every morning and then to Discovery Place where they are now in the afternoon for three days. Then for four weeks, they will attend Camp Shalom at our congregation every morning and then back to Discovery in the afternoon. For the last three weeks, they will attend Discovery three days while I work. I am only working three days this summer and will continue that this fall. We will see how it goes. The summer will be stressful because I have to leave around noon to get them from one program to another, but at least we will have lunch together most of the summer. That gives us two days a week to goof off and go to the farm. The girls really enjoy it at the farm. They love their Grandma, her cats and all the dirt and mud. Most days we leave they have to ride in the car in the underwear because their clothes are so dirty. They will also continue their swim lessons this summer. They are both fish and love the water. Our neighborhood pool opens this weekend and the girls can’t wait. They are watching the progress every day!

We will be glad when the month of May is over and the calendar is a little lighter. We had four graduation parties to attend, along with some of their school activities. We did get to see the Penguins at the local Zoo this past Saturday with Malina’s class.

Scott will start his classes for his MBA degree later this month. He is starting out with one class this summer and then two this fall. He hopes to complete it in three years.

Say a prayer for all the sick children. There are too many. Don’t forgot to be an organ donor. You will save lives of many. Have a fun and safe summer!

Tuesday, May 1, 2007 1:32 PM CDT

Well, it has been an interesting three weeks since I have been back to work parttime. I only go in for two hours two afternoons a week. By the end of the month, I will go in three days from 9-3. We will see how that goes.

On to the happenings...
Along with Janna having elevated liver labs in April, she had her worst allergic reaction last week!! Ironically enough, it was the night Dr. Daniel (her old GI from Children's Mercy in Kansas City) was to have dinner at our house last week. The worst part and I mean worst part is that it all could have been avoided if I would have taken the time to read the label, like I always do!! She was given some Sweetarts after swim lessons last Wednesday. I thought it was the regular Sweetarts. I have them at home (it is my favorite candy). On the way home, I had to drop of a cake for a funeral. She stopped eating them and said that her tummy hurt and that she ate too many. Well, I just figured she had to go #2, since her belly most always hurts before that. By the time we got home, she was in pain, but went #2 and it was diarrhea. She would not let me put her down to make dinner. It progressed from there to sneezing, congested and more pain in the belly. I never once thought of the candy...DUH!! Scott came home and the candy was his firt thought. Then came the red rash. I gave her Benadryl, but by then it was an hour after she ate it. Then came the hives and itching. She was completely red and had hives all over. I put her in the bathtub, thinking that would help. Scott found the wrapper in the car and it was CHEWY Sweetarts and it contained ALBUMIN (the protein in egg)!! Since she was breathing fine and I knew we would have to go to ER anyway once we gave her the Epi=Pen, we decided to let them give her the shot. We headed to immediate care that night. I will never, ever withhold the Epi-Pen ever again. She was over the reaction within 5-10 minutes of the shot. The redness and itching were gone, the sneezing and congestion. It was so amazing. I knew the nurse. She was a classmate of my sister's in Andale. That was reassuring. Then she had three days of Orapred (steroids). I feel so stupid. It could have been avoided.

Then yesterday I had to take Malina to the doctor to see if she broke or fractured her nose! She and Janna were chasing bubbles on the driveway Friday night. Oh yes, you guessed it. They ran into each other and Malina hit the cement face first when her feet were knocked out from under her. Then, Janna, all 36 lbs of her landed on top of her head! Malina didn't ever complain about her nose. She complained about the area across her forehead. All was fine Saturday. Well, Sunday, she is getting ready for Sunday school and I notice this huge bruise on one side of her nose and halfway to under her eye. She said it hurt to touch it. So, the dr. doesn't think it is broken, but you really won't be able to tell under more of the swelling goes down.

So, in three weeks, three extra doctor's visits...is it worth it to work!! Don't answer that, I know the answer.

Scott is busy getting ready to start classes this summer for his MBA. He is looking forward to the classes, but not the studying. It will take about three years. It is nice to have him home again! The girls will start their summer school programs on June 4th. Of course, they will miss ME!! They will be in a program at three days a week.

Janna has labs again May 15th. We hope they are back to her normal and nothing else goes on this coming month.

Prayers for all our liver friends and families who are sick or waiting for their second chance at life! BE A DONOR!

Thursday, April 19, 2007 11:35 PM CDT

Okay, we are breathing a little easier again! Janna’s labs today were trending downward!! Her GGT was 57, AST 44 and ALT 26, so they are much better than last week. So, I guess her liver/bile ducts were inflamed from fighting all those viral infections last month. Whew, are we relieved. Poor Janna though was absolutely traumatized by this morning’s lab draw. The problem is that nothing was out of the ordinary, except that it was just nine days ago from her last lab draw. She was holding her arm back, kicking and even screaming this time and she has never done that. I felt so sorry for her. I may have to try some Emla cream next time. It is a numbing cream. We are still waiting on her prograf level from today though. Omaha did decrease her dose of prograf back to 0.5 mg (one capsule) last week. So, as long as the level is detectable, she should be back to monthly labs again!

The American Liver Foundation Fashion Show was a success. That means no one fell, the clothing was still in one piece and no spills on it and no tantrums on the stage or while we were waiting! For some reason we were LAST and the show was running half an hour late. I volunteered Scott to model with them next year. There are almost as many men as women in the show. He agreed! So, next year, I will be the official photographer. The location was a theater in The Legends Mall in Kansas City. It worked well. The worst part was the weather. It was cold and rainy and it is an outdoor mall.

The Great Wolf Lodge was great. The girls had a wonderful time. We had a hard time of getting them out of the pool each time. They have a full indoor waterpark that is open from 8am to 10pm every day. There were three pools of different depths, slides, you name it. There was something for everyone. Janna liked to stay in the little pool. There were two slides and she managed to put her goggles down at the last minute before she splashed into the water, screaming the whole way down! Malina liked the lazy river pool. She just liked to swim around and around. She did play with two of her friends who happened to be there from her swim lessons in Wichita. Scott and I would take turns watching them. Scott and Malina went on some of the raft rides together. Scott and I both tried to get Janna to go down the bigger slides, but as soon as she got to the top and saw that they were enclosed, she made her escape. So, maybe next year.

The restaurants were plentiful, but we let the girls pick one night. They wanted to go to the T-Rex Café. It was great. Janna even ate at three (four if you count her hamburger patty at McDonalds) of the restaurants. The chef/manager came out at each place and asked about her allergies. It was great and no reactions!! They had motorized dinosaurs, aquariums and so much to see. They each did the Build-A-Dinosaur (yes, just like the Build a Bear Workshops). They are identical, bright pink brontosauruses. Malina named hers Polly and Janna’s is Lovieheart. She opted to have it say “I Love You” instead of the dinosaur roar that Malina put in hers. While we were there, Malina decided that she no longer needed her “blankies” at night and wanted Polly to sleep with her. So, she is no longer sucking her thumb!! What a feat and she did it on her own and her way! Of course, when we arrived home the thumb-sucking contraption that I ordered before we left arrived the next day, but she doesn’t need it!!

I have been busy painting one wall lavender and one wall cotton candy pink (Janna’s favorite color) in each of the girls’ rooms before the new carpet is installed next week. It has been a real chore with two “helpers” trying to help! I am so glad I finished it today.
Malina’s birthday party (yes, a little late) is Saturday at the bowling alley. They have cosmic bowling for the kids and should be fun. Malina wants to have a Dora cake even though she won’t be able to eat it (egg allergy). I asked her if she wanted an ice cream cake instead and she didn’t. She won’t miss the cake since she is not much of a sweet eater, unlike her Mom! She wants to have sherbet cups too, so she will have something sweet. It will be a mixture of some of her cousins, school friends and Sunday school friends. Of course, Janna will have some kids her age there too!

If all goes like I have planned, the girls will attend some summer camps and programs and I will work three days a week until about 3-4pm. We will see how it goes. When school starts, I will work three days as well and will pick them up at 3pm. I will not budge on that issue until they are much older. There are more important things to do in life than work!

Poor Scott had to drive to Altus, Oklahoma today on his 49th birthday. He will be back late Friday night. I don’t know if the girls were upset that he was leaving again, but last night both of them ended up in our bed, which hasn’t happened in a long, long time. My mom keeps telling me that we need to get a king sized bed just for that reason!

The news on the farm is that the wheat crop was so damaged by last weekend’s freezing temperatures and snow that there will most like be none to harvest. Mom said that is the first time in her life there will be no wheat harvest. I just can’t imagine it myself.

April is donor awareness month. Please make sure you have done what it takes to be an organ donor…sign your driver’s license, let your family know your wishes, in some states there is a donor registry. Save lives and be a donor….remember the 94,000 people waiting for another chance at life!

Wednesday, April 11, 2007 7:29 PM CDT

Well, we had our own “March Madness” in our house. No, not anything to do with sports, but doctor’s visits and illness all month long and everyone was “in the game”. Just to give you the facts, Malina and Janna each had three ear infections. Janna’s last med for that was Tuesday. Malina had some restrictive airways (asthma) and then pneumonia and was on the nebulizer with Xopenex and Pulmicort more than she was off. Janna had bronchiolitis and fifteen days of diarrhea (not that I was counting!). They tested and tested and all tests were negative, so it was assumed she had the stomach bug that was going around. I got the crud in the middle of all of this, and yes, Scott was out of town. Scott came back in late March and had a horrible cough and cold. So, we are so glad that April is here. However, Malina is back on the nebulizer as of this past weekend for her wheezing and cough again.

Janna had her monthly lab draw on Tuesday. We are back on the lab roller coaster again. Big sigh! Her GGT was 100, from last month’s 29, AST 66 from 39 and ALT was 51 from 19. All the rest of her labs are fine. Her white cell count is back in the low range too. Omaha didn’t receive the fax in time for someone to look at it (3:30pm is too late!), so I called about 7pm because I could wait no longer on Wednesday for a reply. They want to wait a week to ten days and repeat labs. Due to the fact that she has been fighting so many infections in March, this may be the cause for the rise in her liver enzymes. I sure hope it is nothing, especially rejection! Her enzymes were high in December and they were just now getting back to normal. Uugghh!

Malina turned FIVE on April 4th. Wow, time sure does fly. We celebrated with frozen yogurt cake because of her egg allergy. She took Krispy Kreme donuts to her preschool class. She has a bowling party planned later this month. She has invited her cousins and friends, some kids from her preschool class and Sunday school class. It will be a fun time on a Saturday afternoon. Howie and Joanne, if only you lived closer!! I think Malina has gained back the pounds she lost while she was sick. She even ate lamb at the Temple Seder and loved it. No, I didn’t even try it. I guess I ate too much of it when I was younger and we raised sheep.

So far, so good on Janna eating soy and foods with red food dye. The problem now is that Janna thinks that everything that is red, she can eat! I had a hard time trying to explain to her that she could not have Twizzler licorice (it contains wheat).

Scott did make it home March 22nd. It seems odd to have him working only forty hours a week. He is home on weekends too. It took us some time to adjust to him being around again. He got home just in time to start mowing the lawn. Then with the snow on April 5th, the l grass will be a little stunted for a while, which is fine with him.

The girls and I are in the American Liver Foundation’s Fashion Show again this year. It is still in Kansas City, but a new venue. It will be at The Legends Mall in the theater. The girls will be modeling clothes from OshKosh. I get to wear an outfit from Ann Taylor. Yes, I will post some pictures when we are back. We are going to stay a couple of nights at the Great Wolf Lodge. They have an indoor water park. We may venture to Worlds of Fun as well, but the weather is a bit chilly here. We even had snow on April 5th. We are looking forward, or maybe it is just ME, but we will get out of town!! We are going even though Janna’s liver enzymes are elevated. There is nothing we can do to get them lower, so we are going to KC. Omaha said to go and just repeat labs next week, so we will! It will still be on my mind while we are there.

We are working on some house projects since Scott is home. We are putting some new carpet in upstairs. It is the original from the time the house was built. It will be a darker shade of beige. It is pretty light and shows all the stains right now. I know, I shouldn’t bother until they are older.

Well, I started back to work already. It wasn’t my plan, but the attorney moved up his retirement date. I started back in the office this week working only Monday and Wednesday afternoons while both girls are in preschool. When summer starts, I will start working at least two full days. We will see how that goes and go from there.

Malina will attend Montessori Kindergarten all day this fall. Janna will attend their preschool half days in the afternoon. She will also attend Discovery Place (where she is now) two mornings a week. That will allow me to work two full days, at least until 3pm. I feel a little nervous about starting to work again. First is the issue of Janna and someone else being with her at lunch. I will bring ALL her food, but there is still a chance of a reaction if someone tries to give her something else. Then, after being at home for almost three and half years, it will be an adjustment…wearing hose, make-up, nice clothes, heels and the worst of it all, getting up early each morning!! The timing is not perfect, but we will take it one-day-at-a-time. This December, it will be TWENTY years since I graduated from law school. Whew, now that is a long time. So, I see my first client on Wednesday. The nice thing is that they were “my” clients before I quit to take care of Janna. So, I will ease into it and so will the family. I am excited about it.
So, the law firm I left three and a half years ago, moved my office furniture two times for me and I am still a partner there. I guess it is nice to still be wanted.

April is Donor Awareness Month. So, I will leave you with a few facts:

More than 94,000 Americans are waiting for an organ transplant
Over 2,000 are children
Every 12 minutes a new name is added to the transplant waiting list
Approximately 17 patients die each day waiting for a transplant
Approximately 1,000,000 tissue transplants are performed each year
Over 27,000 patients received the “Gift of Life” through organ donation in 2006

Be an organ donor. Save a life.

Thursday, March 15, 2007 10:32 PM CDT

Has it been a month already! I am getting so lazy, or busy…I don’t know. I just thought about it. From Janna’s birth until she turned three, I kept a journal of just about everything…all the milk she consumed, all her food and when she ate it, any reactions, the time she took her prograf and any other medicine, any unusual behavior, when she slept at night and at naps, her bowel movements… you name it! At the end of last year, I just quit, cold turkey! I don’t know what I am doing with my time now!

Janna is back to monthly labs! Her lab draw was Tuesday. Her labs were great! Her liver enzymes are even lower and almost back to her normal (AST 39, ALT 19, GGT 29). Her white blood cell count was even in the NORMAL range. I think we have seen that only a few times since she was diagnosed in March of 2004!! Her prograf level was fine, but she is still on the 1mg dose twice a day. I was expecting things to be out of whack with her ear infections and upper respiratory infection. Oh yes, the amoxicilin was flowing in this house for both girls!!

It was so hard to get the girls out of bed for the lab draw with the time change. They are such late sleepers anyway. Janna usually gets up about 8:00 and Malina about 8:30. Oh yes, I don’t know what I will have to do next year when Malina is in kindergarten all day. I guess we will have the summer to work on it. Like me, she is not a morning person. So, if the day started about 10:00 am, that would be fine with both of us!! Now Janna and Scott are another story! They get up chatting as they are getting out of bed and don’t quit until they are asleep!

Let’s see, we have had antibiotics flowing at our house…and the nebulizer! Malina complained of her ear hurting after swim lessons one day in early March. I thought she just had water in her ear. By 10:00 p.m. that night she was screaming her ear hurt so bad. I had some ear numbing drops that got us through the night. Sure enough, an ear infection. She had her favorite amoxicilin prescribed. Then by the weekend, Janna was coughing and coughing. After two days of non-stop coughing, she had a fever. So, on Sunday, March 4th, I took her to the Urgent Care Clinic expecting pneumonia or bronchitis. It was an upper respiratory infection and an ear infection in her left ear. Now she got to take some Amoxicilin. (yes, they do make one brand that has no red food dye). She was so much better on Monday. It was amazing.

Janna had an appointment with the allergist on March 8th. The results from the allergy testing were mixed. Two of the eight allergies went up and all the rest went down. We expected no change, but the allergist told us that she is no longer worried about soy and red food dye. Now Janna is so excited, she is eating everything red in sight. We started off slow on the soy food. She is now eating Boca Burgers (soy patties) with no problems at all!! Janna is celebrating!! We are down to six foods now. We will retest in another year. She did say that her banana allergy and her reaction to watermelon at different times may actually be a ragweed allergy. So we will watch that. The worst part of the visit, aside from Janna not getting on the scale to weigh—she threw the biggest fit (I told her Mamas were the only ones to refuse to be weighed!), was the doctor found an ear infection in her RIGHT ear. So, after some conferring on the next line of antibiotic, she was put on Omnicef. The allergist had prescribed Biaxin, but Omaha said “no” because it was too hard on the kidneys and could interfere with the prograf levels. So we will continue to avoid those six foods and life will go on….right?!

By the time we went to the allergist, Malina was starting to cough her usual tight cough. I started her on the Xopenex through the nebulizer, along with the Pulmicort she is already taking twice a day until June 1st. By Friday, she was worse, but not enough that I kept her home from school. She was so excited because Scott was taking her to school and she was giving her report on Sea Turtles. She felt much worse Friday night and coughed most of Saturday and Sunday. She was having treatments every two to three hours with no relief. She is worn out from coughing. We did make it to see Sesame Street Live on Saturday. Malina was sitting in Scott’s lap the whole time. The girls did enjoy the show. Malina was coughing again Monday, but not as much. We were at Mom’s on the farm on Tuesday and she seemed fine, other than coughing some. She was still on the nebulizer. Then Tuesday night, she vomited twice during the night. She was feeling really bad on Wednesday complaining of her stomach hurting and just not acting like herself. So, we took Janna to school and Malina saw the doctor. After finishing her amoxicilin on Saturday, she had a DOUBLE ear infection. They were not just red, but pus filled as well. On top of that, a chest x-ray showed she had pneumonia! Boy, was I shocked! Her lower and middle right lobe of her lung looked awful. The PA said she could not even see the outline of the lung on the x-ray! So, now Malina is on Augmentin, which she hates, hates, hates. She has lost at least four pounds since March 1st since she is not eating much. The medicine is causing her to have a stomachache all day long, which makes her afraid to eat…she thinks she will throw up. I am going to see if we can switch her antibiotic. She has to feel well enough to eat! Her coughing is much, much better. She should be off the Xopenex by Friday night. If she was not better, they wanted to start her on steroids by Friday. I am so glad she is getting better. Then while Malina is at her worse on Wednesday, Janna starts complaining of a stomachache after swim lessons. She picked at her food all day and wouldn’t even touch her dinner. Mean Mama spoon fed her some dinner. So, by 7:00pm, she is projectile vomiting all over the place. Everything she drank came up. Even after she went to sleep, she was throwing up. She wouldn’t even drink her milk to take her prograf, which she never refuses her milky! Finally after vomiting at 10:15pm, she was threw and asleep! She slept with me and drank a whole can of Sierra Mist throughout the night, which was good. Then by morning and all day today, she has had diarrhea. So, if she is not better by Friday morning, I will take her in. She does keep drinking and eating, which is good. It just goes right through her. After she eats, she goes every fifteen minutes until there is nothing left. The poor girl! I tell you what, Wednesday was a long, long day. I was worn out from all the vomiting and diarrhea. And where was Dad!! Janna will finish her Omnicef on Saturday. Hopefully whatever germ bug has landed in our house is packing his bags and leaving. We don’t want him to stay ever again! Just when I thought we made it through the winter without too many illnesses! Boy, was I ever wrong!
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Oh yeah, and in the midst of all of that, I went to see my doctor. I had a sore throat for over a week. It was so bad it was even waking me at night. Well, it was viral pharangitis and nothing to do but wait it out…and I still am! Oh and I turned 46 while administering all the meds too. It was such a busy weekend. Scott was home for the weekend and Janna was coughing so horribly. We had planned to go to the Purim Dinner at the Temple, but I went alone….hot dogs and chili!! Scott brought the girls later for the Purimschpiel because I played Queen Esther. It was a lot of fun and work. Scott didn’t know much about the plot, so it was fun for him too.

Well, Scott has been in St. Louis since January 31st. He has been back for five days the end of the February, the last two weekends and now he was to return today, but instead it will be a week from today!! The thirty days has almost turned to sixty!! I just hope it ends next week. Being a single parent is not for me!!

I am volunteering two afternoons a week while both girls are in preschool. I am in Malina’s classroom. I am formulating a plan to go back to work (yes, as an attorney) part-time this fall. I am going to start with two days a week in the office and work from home while the girls are in school the other days. Malina will go to all day kindergarten. Janna will go two full days and three half days. I just don’t want Janna in school all day this young. I know she would love it, but I want some more time with her. They are both growing up so fast! We will see how it works out. I am one of those persons who have a hard time shutting it off if there is work to do. I will stay up until it is done and that is not a good thing most times! Scott is not liking the idea of me going back to work. We will just take one day-at-a-time.

All the grandchildren and great-grandchildren (and Moms) are having a sleepover at Grandma's house this Sunday. We have been trying to have it since the winter and someone was always sick! There are 29 invited, but, of course, we won't see the teenagers!! The girls can't wait. They always like the pillow fight the best!!

We are planning a trip to Kansas City to the ALF Fashion Show in April. We are going to stay for a few days to make it a mini-vacation since we didn’t make it to the Ozarks last fall like we planned. We will stay at the Great Wolf Lodge where they have an indoor water park. The girls are so excited!

Please say a prayer for all those waiting for an organ, those who are sick, those who are recovering and those angels who left this earth…there are always too many.

Thursday, February 15, 2007 11:10 AM CST

Janna had a good Valentine present…her liver labs are continuing to decline. Only one is in the high range, but still declining. They are not yet back to “her” normal, but we are getting closer. We are hoping to go back to monthly labs, but we are waiting to hear from Omaha. Janna will have her food allergy lab testing next week. She will see the allergist in early March and she wants the results before the appointment. I hate it that Janna has to have two labs back-to-back, but there is no way to avoid it since these labs are sent out and take more than a week for the results.

She has a dry cough and a runny nose, but that hasn’t slowed her down. She is attending preschool TWO afternoons a week and still taking swimming lessons twice a week. I think she likes swim lessons more than preschool, which is saying a lot. She is really attached to her instructor “Miss Wanda”. She is a grandmotherly type and really connects with Janna. As Janna would say “she is my best friend”. If you know Janna, she has a LOT of best friends. I have to remind myself all the time that she is THREE now. She is a big girl…and she reminds me too. She gets dressed all by herself and seldom needs my help, except when it comes to combining her outfits. She loves to wear an outfit and then put a summer dress or skirt over the top of it. Panty hose are her thing too. She just loves to wear panty hose and “tippy tap” (high heels) shoes. She found a real bargain this week. She had $5 to spend from a good friend of ours from Valentine’s Day. She found SIX pairs of tippy tap shoes for $5!! She was so thrilled. Dad won’t be when he is back in town.

We had school conferences for Malina, rather I did, since Scott was out of town. I thought it was just a rubber stamp with all kids that they are ready for kindergarten. Well, out of 28 students tested, only 8 were recommended for Kindergarten. Yes, Malina was one of the 8. Whew! Now we are trying to find an all day kindergarten. We are in a district that does not offer all day, yet. Plus, she would be going to a brand new school that is merging with another school. That is too many red flags for my daughter and I! We have an application in two schools that have all day kindergarten, but she has to be tested first for admission. So, either she will get in or not. I am not going to lose any sleep over it. She knows what she knows. I am quite proud of her. There was not a box missing on her testing sheet. Her teacher was proud of her too.

I am volunteering two afternoons in Malina’s class and love it! I do have a degree in elementary education and early childhood. It is just great to get out and do something. I feel like I need to give back to the community. Malina’s class needs me more than Janna’s. Janna really needs to be on her own. In fact, I don’t think she would want me in her class right now. She is so independent and head strong…gee, where did she get those traits!! The people that meet her can’t believe she had a liver transplant. She is so outgoing and quick to give anyone standing still long enough, a big hug. She is such a lover and like I said “everyone is her BEST friend”. It is so cute!

Scott has been gone two weeks…and very long two weeks. The good news is that he will be HOME for FIVE days through this weekend. He will go back to St. Louis Wednesday for another ten days. Then, hopefully he will never have a long trip like this again. I think the worst part is that before this thirty-day trip, he was working 24/7 for FOUR months. We will be glad to see him while he is home, although it will be busy! We will be counting the days until he is home for good!! I don’t know how single parents do it...and I’m not working outside the home!!

Thanks for checking on us. Say a prayer for all our liver friends and their kids and become an organ donor and SAVE A LIFE!

Wednesday, January 31, 2007 3:28 PM CST

Janna had a lab draw yesterday, along with a check of her ENT and lungs since she has had a terrible cough since Saturday night. All was clear with her cough. We are waiting to have a cough syrup compounded since there is no cough syrup with codeine that doesn't have red food dye!! Her cough is much better today. The worst she is fighting now is a runny nose. She probably caught it last week since she was at preschool three days instead of one. There is something going though. Her doctor's office saw 260 kids at two locations on Monday. I just hope the rest of us don't get it.

Janna's labs are much better. All her liver enzymes are lower AST 67, ALT 43, GGT 62 and ALK/PH 277. Her bilirubin was up to 0.7, but still within the normal range. My guess is that Omaha will keep her prograf level at the current level until the liver enzymes get back to "her" normal.

The girls both missed school today. There was snow falling and the word on the radio was that the roads were very slick, combined with drivers driving too fast. They missed swim lessons too since the snow continues to fall. It just isn't worth it to get out there when you really don't have to. They are having fun playing with their Polly Pockets, My Little Ponies and dress up. We already had an incident where Polly Pockets waterfalls ended up all over the floor, water and all. (ssshhhh, don't tell Dad..he hates spilled water anywhere!) Add to that...they ran out of tape and decided to use postage stamps to hold pieces of paper together. Great idea girls!! What creative thinking!!

Malina must be going through a growth spurt. She has been sleeping until 9:30 most mornings. She has also been taking a nap here and there. One morning I asked her how she slept. She told me she "slept like a ball of yarn." Now that describes it perfectly. Now, Janna, she is another story. She is starting to sleep a lot better at night, sleeping 10-12 hours, but there is no chance of a nap at all. She just doesn't want to miss anything!

Scott left this morning, a little late because of the snow, for three to four weeks. We will miss him. He is in St. Louis, so it isn't that far away, nothing like Saudi Arabia where he used to go for a lot longer.

It will be a long month. We are going to stay busy going to Grandma's for Super Bowl, having a sleep over at Grandma's, see a movie and play and play with some friends we haven't seen in a while. Thanks for checking on us. Janna will have labs again in two weeks. Hopefully by that time, everyone will be well again.

Thursday, January 18, 2007 10:39 PM CST

Janna had a HAPPY BIRTHDAY, even if the weather was horrible! We celebrated at home with her allergen free pumpkin cake. Malina wouldn't even taste it. She had FRUIT instead. It was pretty good. I decorated the top with a rainbow using sprinkles. Janna was more interested in making sure she got to taste each color of sprinkles. She wore her birthday tiara with a t-shirt and no pants. It was only 10 degrees outside!! She opened her "shot" baby and started on some medical procedures with her. Her birthday party at Grandma's with the cousins is set for this Saturday, inbetween two birthday parties that Malina is invited to. Such is the life of a preschooler!! The family will be involved with shearing my brothers' sheep. So, it will be a busy day. Malina wants to take some pictures to share with her preschool class. Since they are studying mammals, this is perfect!

We did have pictures taken on Tuesday as well. I will post them this week. I should post some of the pictures of Janna sticking her tongue out at the photographer or giving her "the look". She was so ornery that day. Malina was so mature. She even helped pick out some of the pictures and helped the photographer choose the background color.

Janna had her THREE year check up on Tuesday. She weighed 34.8 pounds and was 37 1/2 inches tall. Her blood pressure was 84/58. Dr. Chavez was happy with her growth, although most kids grow more in the weight category. She is still at the 70-80

Friday, January 12, 2007 8:06 PM CST

Janna had labs yesterday and it was a mixed bag. The good news is that it took only ONE stick to get the lab draw. Thank you nurse Kelley for coming back from maternity leave!! The other good news is that her GGT was down another 50 points to 90 (her normal in the teens). Her ALT and AST (liver enzymes) were both up by a few points (in the 70s). Her bilirubin doubled (0.6, only 0.1 direct), but was still in the normal range. Worst of all was that her prograf (anti-rejection med) was undetectable (<1.5). So, that means she will have labs again next week instead of every other week. All her other numbers looked good. Her hepatitis A test came back "reactive". Come to find out, that only means that she holds a titer to hepatitis A, which is a very good thing. We still don't know why, but we did not find out until this week that her CMV IgM came back high at .8 (normal is under .7). She was CMV before transplant, so it was no surprise, but this number means that she has an active viral infection from CMV. Omaha wants a different CMV test run before they jumpt to any conclusions. They are really not concerned because she is not showing any of the typical symptoms and her liver enzymes were coming down on their own without any changes to medicine. So, instead of Janna having her THREE year-old appointment on Tuesday for just her physical, she will have to have a blood draw as well. I was hoping it was only going to be her physical.

Yes, that means that Janna will be THREE on Monday, the 15th. She is so excited and has been telling anyone who will stand still long enough that she will be three (and holding up three fingers) on January 15th. She is most excited about taking treats to her preschool class on Wednesday. She LOVES her preschool and doesn't miss me a bit. I will add another day when we are through the cold and flu season. She went to the store with me to pick something out. Of course, she can't have it. She will have a pumpkin muffin or some of her leftover cake. The funny thing is that she really wanted her cousins's Baby Alive doll at Christmastime. So, we went to look for it for her birthday. Instead of finding it, Janna picked out a doll that came with a MEDICAL KIT. She told me she wanted the baby with the "shot". She didn't care to get the Baby Alive anymore. Well, maybe that means she will be a doctor or nurse when she grows up. I know she likes to play doctor. We all get shots, give blood and get our temperature taken all the time.

Malina is back to good health again. She is still on the nebulizer twice a day with the Pulmicort, but that will continue until summer. She loves school as well and really wants to go everyday....but MOM is not ready for that! She is anxiously awaiting her birthday in April and reminds me all the time, like I would forget!

Both girls are taking swim lessons. I took Malina out of tap/ballet/theater class at break. I thought the swimming would be better to strength her lungs and maybe beat this cough! We will see if my plan works. Both girls are fish and love going twice a week. Janna is in level one and Malina in level three. I hope they continue to like it.

Scott is still working long hours and seven days a week. Hopefully it will come to an end in another month or so, but before it ends, he will be in St. Louis for 3-4 weeks. Oh well, we will miss him...and survive.

I am now the Youth Group advisor at the Temple along with another brave soul. We started January 1st. I am also on the board for the Federation, so I am starting to stick my toe back in the water.

We hope to take a short trip when Scott is through working 24/7, but don't want Malina to miss preschool. She has spring break in March, but we don't want to fight all the spring break traffic. We are looking forward to it.

Please keep Janna's donor mother in your prayers. We have not heard from her since last March, but we will keep writing and hoping that all is well with her. Keep our liver friends in your prayers as well. Also, and most importantly, make plans to be an organ donor. You will save lives and make a real difference in the lives of others.

Friday, December 29, 2006 11:09 AM CST

Hooray!!! Janna's labs yesterday are still on a downward trend! Her stool culture is still not back, but it will take up to thirty days. The only abnormal test is her Hepatitis A, which showed reactive. We are trying to get the numbers associated with the test so that we have something to base it on to repeat the test in a month. We may never know what caused her liver numbers to climb. She is still as ornery and active as ever. She still has that deep cough, but it has not slowed her down one bit. The word is that the cough can last up to four weeks. Her blood draw only took one stick yesterday, but the nurse had to dig a little to get the vein. We are so glad that our nurse will be back from maternity leave next week. Hopefully her labs will be back to uneventful soon. We are still waiting to hear from Omaha, but expect to hear that Janna will have weekly labs until her numbers are in the normal range again. Her AST is now 71 from a high of 133 (normal is under 32, but hers has been hanging out in the 40s), ALT 49 from 152 (normal for her is in the teens and lower 20s), GGT 139 from 242 (normal for her is in the teens), ALK/PHOS 420 from 495 (normal for her is in the high 180s/200). Her white count is in the normal range for the first time in almost a year!

The sad news at our house is that Malina is having some major breathing issues with her asthmatic cough. She has been on the nebulizer since Saturday night. She has been so bad some days that she has treatments every two hours. We took her to the doctor on Tuesday since she was running a fever and vomiting some, but her lungs were clear. She had some allergy type mucous in her nose, but that was about it. She has to take oral steroids for four days in order to put this episode at bay. She has had a bad month with her asthma like cough. She just got through another episode less than ten days ago. They are not calling it asthma, but restrictive airways. So she is taking Xopenex and Pulmicort through the nebulizer, oral steroids and a cough syrup with codeine at night. She is getting better, but has felt so bad. She is sleeping 12-15 hours a day and taking a nap every day. That is just not normal for a 4 1/2 year old. Janna has been a good nurse to her. Once she is done with this episode, she will have to take Pulmicort twice a day until June 1st!!! That will be a long, long time!! We just want her to get out of the cold and flu season without any more episodes. She sure wants to go back to preschool next week!

So, this holiday season has not been a good one for the girls health-wise. Dad has been home, but we have not done anything besides stay at home. Dad was the nebulizer man in the night when Malina needed it. He was a real trooper. He experienced some major sleep deprivation. We are so glad he was home though.

We are still counting our blessings from this past year. We are thinking of our donor mother, Amber and her angel, Jonathon, who gave life to our Janna. Prayers for all our special friends and their kids.

We wish everyone a healthy and happy New Year!

Friday, December 22, 2006 9:21 PM CST

The good news is that Janna's liver labs were all trending downward today!! We are not out of the woods yet, but we are breathing a little easier now. It has been a long, long week and today was even longer.

Janna was up during Thursday night twice. When she came to our bed about 4:30am, she was running a low grade fever and coughing. Normally the Benadryl stopped her from coughing through the night, but not last night. She was up for about two hours. She was so talkative and just wanted to play. I have not seen her like this during the night in a long, long time. So, when it came time for labs, I had to wake her and rush out of the door. Thankfully Scott was home to stay with Malina. Janna was in such a good mood, even though she knew we were going to the doctor. She took along her favorite Hanukkah present from the night before, an art set and some paper. Another nurse tried this time, but failed THREE times to get enough blood. Thankfully she got enough for the prograf tube just in time for the trough level time table to run out. We waited about thirty minutes for the "Tuesday nurse" to try again. She looked and looked and said she didn't think she could get anything. I appreciated she didn't want to try, so we waited some more. Finally a PA came in and stuck her in the hand (big OUCH) and got the draw. It was painful and Janna was sobbing by them. It was horrible and I felt so bad as she was begging me to make them stop. I had the PA check her out since she had a fever and she found nothing. By the time we got home we had been gone TWO HOURS!! So, I knew the lab results would be later than usual because of it.

We tried to go about our day, but it was tough trying not to think about it. Janna stayed in all day and played. Malina went to preschool as usual and then had a birthday party at Pump-It-Up after school. I finally called our nurse about 3pm and asked about the labs. She said she faxed them to us about 1:15pm. I asked her to send them again and called home. There were no labs sent. Scott then called with the numbers. It was so great to hear that all her liver numbers were down.
GGT 179 from 242
AST 99 from 133
ALT 90 from 152
ALK/PHOS 463 from 495

We didn't hear from Omaha until about 4:30pm. They want to repeat labs on Thursday to make sure the numbers continue to trend downward and to check the prograf level as well. I think we are finally breathing again. Our last night of Hanukkah was great. Janna is still coughing and has a runny nose, but we are HOME, HOME, HOME...and Scott is here to be with us!!

Please say a prayer for all our liver friends and keep our angel donor's mother, Amber, and her family in your prayers. Without her selfless gift of donation, our Janna would not be enjoying life. Have a safe and Happy holiday and thanks for checking on our precious girl.

Tuesday, December 19, 2006 10:30 PM CST

I want DO-OVERS this week!!!!

Routine monthly lab draw Monday morning. I wake up two sleeping girls to get to the pediatrician’s office for lab draws by 8:30am (yes, we have late sleepers at our house), BUT as we approach the car in the garage, the doors do not open. It does nothing. The battery is DEAD!! I had to reschedule the labs for Tuesday morning. UGH! It took an hour to have road assist jump the car. We then met Scott to get a new battery put in the van. We have to have wheels!!

Tuesday—rescheduled monthly labs (remember our nurse is still on maternity leave). I had to wake two sleeping girls AGAIN. I hate that! Part of the problem is that I have to give Janna her night dose of prograf (anti-rejection) so late so that not more than twelve hours has passed since her last dose and the blood draw. So, I pushed the dose from 8pm, our normal time, to 8:45pm. It makes for a really late bedtime once a month. It took FOUR sticks and TWO nurses and FORTY-FIVE minutes to get enough blood for Janna’s monthly blood draw. She was a wreck to say the least. She did get to pick a “toy” out of the treasure chest, but found a sucker instead! It was not the food I had intended for breakfast.

That gave us just enough time to race home to change out of pajamas and eat breakfast and head to the dentist. Both girls had cavities to fill. Yes, Janna had two tiny spots on her two of her molar. Malina had two between her teeth that were “caught” on x-rays. We knew Janna’s teeth were not good because of all the meds she was on, but didn’t expect cavities this soon. Malina is not a sweet eater and is a good brusher. I hope she doesn’t get her Dad’s teeth (sorry Dad). The girls did great. Malina had to get two shots to numb her tooth and she did not even know she got a shot at all. Janna climbed right up in the chair when it was her turn. They did a whisper jet procedure and just sealed the two teeth. It will have to be redone or filled properly when she is older. They did just what the dentist asked him to do. They were fun to watch, although I don’t like the idea of cavities!! I can’t wait to get their teeth sealed!!

Then I get a call for additional testing from my mammogram last week. Great, just what I want to do again. A friend of mine was recently diagnosed with breast cancer and just started her chemo last month. It weighs heavy on my mind…

The absolute WORST news of the week is that Janna’s liver labs are ELEVATED. I don’t mean a little. I mean a lot and ALL of them! For the liver moms, AST went from 47 to 133, AST from 23 to 152, GGT from 15 to 242 and ALK/PHOS 221/495. Her prograf level was 3.7. The good thing is that the nurse ordered the labs stat today and they were back and faxed to Omaha by noon. Omaha called about 1pm to ask how Janna was. She has a bad cough and runny nose. They were glad to hear that since their thinking is that it could be something viral and not her liver. By 1:30, her pediatrician called and we decided she should be seen just to make sure nothing was missed. We saw him and he really found nothing. They had some extra blood so he ordered some additional tests: hepatitis panel, CMV, EBV and a stool culture. By the time we got home, Omaha had called back to say to repeat labs on Friday and they would decide then what to do. They never change anything based on one lab draw. So, as I understand it, if she is still showing signs of sickness and her numbers are up, they may repeat labs next week. If she is better and her labs are still high or higher, then we will have to travel to Omaha for a biopsy….just what we wanted to hear. We were told that most kids reject in the first year and Janna didn’t, but we are only sixteen months post transplant. Here is my theory: Janna has been fighting virus after virus since Malina has been in school (strep, ear infection, cough, cold, etc). They put her on a low dose of prograf in October. I think her body has been fighting these infections and liver so long and throwing the low dose of prograf in there caused the problem. That’s my two cents.

NOW YOU KNOW WHY I WANT TO START THIS WEEK OVER!!!!

Malina is still enjoying school. She gave an oral report on Mercury last week. We had fun working on the posters. She had to tell the class two facts about Mercury. She did really well. It was fun to see her talk to her class. She had a spell for about a week on the nebulizer to help with a tight cough. She didn’t miss school though.

I finally gave in to Janna staying in Malina’s classroom for almost an hour every day and put her in preschool one afternoon a week starting in December. So, she has only gone two days an she LOVES it. After I talked with her teacher about her liver transplant, her eight food allergies and gave her the Benadryl and Epi-pens, she never flinched. She is a great teacher. When I told Janna her name was Mrs. White, she looked up at me and asked "is it Snow White"! It was so cute! Oh yes, I did tell Mrs. White that one. When I told my girl goodbye, she said goodbye, but didn’t have time to look up at me! I did have to cry as I walked to my car. She doesn’t need me anymore every minute! She talked and talked about her first day. Everyone is her “best friend in the whole wide world” and her classmates are “my kids”. She points at the building when we drive by and tells everyone “that’s my school”! She will miss tomorrow though and won’t go back until her numbers are back in the normal range or she is released. Good thing there is a break coming up!

The girls are enjoying Hanukkah. They take turns lighting the candles with Daddy. I hope it doesn’t end like last year when they continue to ask for gifts after the eighth night. It was a disaster! The whole family gave a Hanukkah presentation to Malina’s class during Holiday Traditions last week. The kids had fun. Malina gave them each a dreidel and chocolate coin. Scott did such a good job, they want him to come back and help them with a lesson on airplanes!

Please keep Janna and all our sick friends in your prayers. We pray that her labs will be trending down on their own by Friday, that we stay home (and not in Omaha), there are no more meds to take and we get to spend time with our family and friends during the holidays. Oh yes, and Dad will be HOME from Friday until January 2nd!!! What a treat after he has been working seven days a week since October!!

I will update more when I know more. Happy Hanukkah/Merry Christmas/Happy Holidays to all of you!

Monday, November 27, 2006 9:46 PM CST

Okay, yes, I did forget to post about Janna's prograf level from last Monday. It was 1.8, not above 2.0, but all Omaha wants is a measurable level. The results were back Monday afternoon. I waited until Wednesday morning to call Omaha to make sure of their plan. I did convince them for just one more lab draw for her prograf level. So, today, poor Janna, had another lab draw. Again, it was "just" her prograf level, but nonetheless, it is still a needle stick and trip to the doctor's office. Worse than that, she can't have her milk when she gets up. I have to hold off with her milk until after her blood draw. So, she is never a happy camper when we are going out the door first thing in the morning without her beloved warm milk. Now I do feel guilty for Janna being poked again. Her prograf level today was 2.7. So, now she is back to regular monthly labs mid-month.

Thanksgiving was great. We have so much to be thankful for. We are always thinking about mother Amber and angel Jonathon for Janna's gift of life. Scott was home all FOUR days. What a treat! The girls had a good time playing with all the cousins...remember they are two of 27 grandkids and three great grandkids. I had a whopping cold, runny nose and couldn't really taste anything. I think I went through a whole box of Kleenex from Wednesday night through Saturday. It was horrible. The sinus pressure was horrible. While the kids and Dad were sleeping through the night, I was up hacking, blowing my nose and trying to find some relief. I have never been this sick in my life. I have been sick THREE times already since October 1st!!! Enough already! Oh yes, I did get the flu shot. We all did. So now, Malina has the congestion and a little cough. Janna has the cough and a runny nose. I was so nice to share my cold with them. I hope Scott doesn't get it. He doesn't need the down time. The weather has been so nice. We have been visiting new parks and staying outside all we can because we know it will end soon.

Thanks for checking on us. Please keep all the families that are waiting for organs and the sick ones in your prayers. Please be an organ donor. It save lives...

Sunday, November 19, 2006 9:54 AM CST

Okay, typing this again is no fun. The site locked up and I lost the update yesterday...

Janna had a rough week. Her regular lab draw was Wednesday, but we are without our favorite nurse, Kelley, who is out on maternity leave after having a healthy baby boy, Hudson, earlier this month. So without an introduction or hello, in comes "Angel" the fill-in nurse. I guess the transition was not a smooth one, as she was unsure as to what labs she needed, so already I didn't get a good feeling. The good thing is that she got Janna on the first stick. Janna just cried in anticipation and then watched the draw. The bad thing is that the vein started to clot off and the "purple" tube was not filled to the top. I think if she would have jiggled the needle, she could have filled the tube, but what do I know! I think I have learned some tricks in the past three years of this. Well, as we were leaving, one of the other nurses came out to tell me that she called the lab and they needed the "purple" tube filled to the top--it was her prograf level! So, they needed to stick her again. Well, by then, I had already given her the morning dose of prograf. The only thing we could do was to come back the next day. Now I remember that is why Kelley always filled the purple tube first because the other tube doesn't need near as much blood. So, I did tell the head nurse this and she said they were going to write up a routine for this so that it would not happen again. So we go in again on Thursday for another lab draw and more tears. They got her on the first stick and she got to get a prize out of the treasure chest. After five minutes of digging around, she picks out a SUCKER, of all things. Oh well, it made her smile and was worth it.

The good news is that her liver is HAPPY with the new lower dose of prograf. The bad news is that her prograf level came back was UNDETECTABLE on Friday's report. That means it was lower than 1.5. They want her level to be 2-5. So, I wait patiently Friday waiting for Omaha to call and tell me what we are going to do. I knew they would not change her dose based on one lab, but wanted to know if they wanted a Saturday lab draw. By 7pm there was no call so I called them. Her lab report wasn't loaded, but I explained what was going on. Since her liver is happy, we will repeat her prograf level only on Monday. So, that makes THREE lab draws in SIX days. Whew, the poor girl. I was hoping for a quiet week for Thanksgiving. It was last Thanksgiving that we were starting to go through all the allergy issues and high prograf levels. Oh well, it could be much worse. We will report after the results come back from Monday's draw. I hope we don't have to increase her level again!

Friday was such a peaceful morning. Dad was at work. Malina and Janna were playing a Dora game on the computer and Mom was working out. Well, when I went to check on the girls, I fell to my knees. I never thought it would happen in my house, but Janna found a scissors in the desk drawer that I did not remember was there. They have been playing on the computer for months now. Well, she cut her hair!! She didn't cut her bangs, but cut along the side from the front to behind her ear. It is as short as her ear on that side. Her hair that has never been cut since birth has now been cut!! I could not believe how much she had cut. There was a huge pile of hair on the floor. She even cut Malina's hair too. She cut hers on each side of the front, but not much, thankfully. Right now she just wears it in a ponytail and you really can't tell unless I point it out. I don't know if I will have it trimmed on both sides to match or just let it grow out. I am still in shock! We have used the scissors so much in our craft work that I never worried about either of them cutting their hair. I asked Malina why she didn't tell me and she said that she was going to AFTER she finished the game!! Oh, well!

Dad is still busy working seven days a week. We don't like it, but we will survive. We known there is an end in sight. Malina is busy with preschool and tap/ballet/theater class. Janna and I got to sit and observe her class last week. It was so hard for Janna to sit and watch and not join in. I think we are going to put her in preschool at least one day a week after the first of the year. She begs every day about going to "her" school. Malina is starting to read. For sharing at school, she read a page from a book. She is really enjoying being able to read on her own some!

We have so much to be thankful for this year. We are looking forward to enjoying the holidays with our family this year. Last year we had to stay home for the holidays since Janna's transplant was so new. I am sure they will catch some germs while we are there. There are over 70 people with just our immediate family there. The girls will have great fun. Did I say we are looking forward to it...and two little ones to spoil too!

Please keep our liver families in your prayers. Two families lost their baby boys earlier this month. One had been waiting for a liver for six months and died in ICU waiting. The other received a portion of his mother's liver and after 10 additional operations and numerous complications, died waiting urgently for another liver. There are in our thoughts and prayers every day. Organ donation is so important. Please make sure you are a donor and spread the word. No one should die waiting for an organ. We realize how blessed we were for Janna to get a liver when she did and for her recovery. Life is precious. Happy Thanksgiving!!

Saturday, November 4, 2006 2:39 PM CST

Janna's prograf level was checked this past Thursday since her dose was lowered two weeks ago. The results Friday showed her level at 2.7, which is within the range Omaha wants (2-5), but just barely. She will have all her regular labs in two weeks, as usual. Hopefully her liver will be happy with the lower dose of prograf. It is so nice when she takes one pill in the morning and one at night...and that's it!!!

Janna did get the flu shot on Thursday as well. We stayed about an hour just to make sure she had no reaction and she didn't. What a relief. I had been dreading the flu shot for both girls this year. The bad news is that Janna has an awful cold, cough, runny nose and congestion. She had to have a few breathing treatments to help get her through the night when the cough is the worst. She is much better today, although she is still congested and has a runny nose. Oh the joys of being out and about!!

The girls sure had fun trick-or-treating with Dad. They were both princesses. Janna stayed out longer than I had anticipated. She was all smiles. We barely made it in the door and she dumped out her candy bag and was going through it. It was so sad...I can't have that, or that, or that, or that...is this suck red?? I did have "her" candy on hand, so she had some to eat. She even traded Malina some of her candy for some she could eat. It was cute to watch bargaining in action. They also went to a school costume bash the Friday before Halloween. They had fun and most of the games had non-candy treats, which was great. The girls did all the games at least twice and we headed home. It was perfect for their age. I will post some pictures.

Scott announced this week that he has to work SEVEN days a week until February!! Needless to say, it did not go over well with me! February is a long way off for no breaks! The weekend days may not necessarily be full eight hour days, but they have been so far. Hooray for the overtime, but that is the only thing to be happy about. Oh, yes, he has a job! Scott has to remind me of that since he works for Boeing!

We are taking down Halloween decorations and putting up Thanksgiving today. It doesn't seem like it should be time for these holidays. Then I remember that if we had not cancelled our vacation, we would be in the Ozarks RIGHT NOW! Oh well, no more whining...maybe! Hopefully the next two weeks will be uneventful!

Monday, October 16, 2006 7:24 PM CDT

Well, the germ bug has hit Janna again. Both girls have had a runny nose and Janna a cough mainly at night (not croup) and I was sick with a bad cold and cough the week before, so I know I started the germs in our house. Janna was up most of Saturday night/Sunday morning just whining and crying and not sleeping. She said her ear was hurting. So we tried drops and Tylenol and nothing seemed to keep the pain away enough for her to sleep or either of us either. We headed to the Immediate Care (what a name!) after noon on Sunday. Sure enough, she had a bad ear infection. So, Amoxicillin again for ten days. She was so much better when we were at the Clinic that I know people were wondering why we were there. The doctor said she was not going to insert the probe all the way because she could see that it had to hurt. We also got some drops that will numb the ear too. Now we know that the Amoxicillin 400 has to be a certain manufacturer to be free of red food dye!! Who would have thought!! The poor girl slept for three hours Sunday afternoon...and she needed it!
Janna is a better today and slept better last night. She only coughed a little and didn't seem to have any ear pain all night. She finally got some good rest and is back to eating well again. I called the pediatrician and postponed the flu shot until she is off the meds and we are sure the ear infection is gone. There is no sense putting her through the shot when she may have a reaction AND she is fighting her liver AND the ear infection all at once. I hate waiting for the flu shot until November, but it is the only option at this point. I know, I should have taken her when they were first offering the flu shot last week!!
Janna has her lab draw Tuesday morning. We will keep our fingers crossed that her liver is happy and all is well...we will report when we know the results.

****Tuesday's lab results
This is probably the last lab draw for our favorite nurse. She is due to have her baby in the next four weeks, so we will have to get used to Miss Annette. She has helped out when Kelly just couldn't get it, so she will work out just fine, but we will miss Miss Kelly until she is back.

Janna's numbers are pretty good considering the ear infection. Her liver numbers are all lower than last month, some not by much, but still lower. Her AST is still high at 41, but that is the only enzyme that is out of range and it has been for a few months now. All her other numbers look good too. Well, except her prograf level is 11.3. They want it from 2-5. I think it is higher due to her infection and that is why they are not changing the dose. During last month's lab draw Janna was taking Amoxicillin for strep and her prograf level was high at 7. We will just wait and see. We will wait for Janna's flu shot until she is finished with her meds and not much longer. I want her to get the shot as soon as she can...and NOT have a reaction. Janna was so relieved that she ONLY had to give blood and NOT get a shot! She will get her last Hep B shot in late December and they we will check her titer to see if she held immunity and I sure hope so for all the pain she had to suffer through all the shots again.

Malina got her flu shot. I didn't tell her until we were in the room with the nurse. She always sits in another room until Janna is finished with her lab draw--and I don't blame her. She cried a little bit and then said it just hurt a little when it was over. We stayed for 30 minutes to make sure there was no reaction. The nurse listened to her lungs and off we went. Later in the afternoon she had some inflammation below the site and today it is still inflamed. It is considered a mild side effect. She hasn't complained today at all that it hurts. So, one flu shot down and one to go!

I did call Omaha about our donor mother. We have sent two cards and pictures in May and August and have heard nothing since our initial letter from her in March. They did confirm that both letters were sent and did not come back. She told me not to give up hope and I am not. I know she is a young, young mother who went through a very emotional and traumatic experience to lose a young son. I told her we feel so fortunate to have heard from her at all. From her letter though, I did not expect NOT to hear from her. We will just keep sending letters and pictures and waiting.

The girls can't wait for Halloween. Malina is a princess and Janna is Tinkerbell. We will post pictures after Halloween. We will have to decide what events to attend. There are just too many. Janna has her extra large bag of Skittles from Sams ready to eat since she is allergic to most candy. She can really only eat the extra sugary, sugar, sugar candy, did I say sugar!! Oh well, as long as she gets something, she will be happy. She has been practicing to say "trick or treat". Scott has taught them another verse and I told him he will be awfully embarrased if they decide to say it!!

Malina is busy trying to spell every word she knows. She is getting really good at sounding out words and writing it down. She still loves anything to do with art and her teachers figured that out really early. Janna just loves to play school and have homework. She wants to do what her "sister" is doing 24/7. Yes, she is now calling Malina her sister instead of her name. It is really cute. She is also into identifying who is a boy and a girl. Today we were at the checkout line and the guy was wearing earrings. She was telling me that he shouldn't be wearing earrings because he was a boy! I don't think he heard her, but it sure was cute listening to her tell me and I totally agreed with her!

Our November vacation has been cancelled due to Scott working some overtime and some weekends. Boo hoo! We were, well I was, looking forward to getting out of town and the Ozarks are so pretty this time of year. Oh well, maybe next year. We hope to make it to Dodge City to see our newest cousin, Faith Marie and spoil her some. We were supposed to go on Sunday, but Janna just had to visit the clinic that day! Never a dull moment. Say prayers for all the sick liver kids and those waiting for a liver. It is so hard to watch them and wait when they are so sick.
****Friday update***
Omaha called late yesterday afternoon and reduced her dose of prograf to 0.5mg. That means one pill in the morning and one pill at night!!! I keep thinking back to pretransplant when she was taking 18 meds 10 times a day. We are blessed. Of course, she will have to have a blood draw in two weeks to make sure the prograf level is where they want it to be, which is between 2-5. It has been high the past two lab draws, so I figured they would be calling! We will keep our fingers crossed that the new dose will keep her liver happy. We haven't reduced the dose for six months.

Tuesday, October 3, 2006 9:37 PM CDT

The girls, Grandma and I took a journey this past weekend. We left Friday when Malina was out of school and went to Oskaloosa to watch my little brother, Steve, "coach" his Troy Tojan football team. The girls had a blast at the game. It was a beautiful evening and they WON! They are undefeated! Go Trojans! We caravaned to Steve & Natalie's home in Troy and spent the night.

Janna and I got up early and traveled into Kansas City for the First Annual American Liver Foundation's Walkapalooza. There were five liver kids (Alexander, Ali, Tanner, Tyler and Janna) in the area and we walked as a group as "Liver Friends and Families". It was great to meet their parents. I feel like I know them since we are on-line a lot of the time sharing our experiences. It was a warmer day then we had planned. Janna had a fun time in the bouncy house! She took a nap on the hour and a half ride back to my brother's. We stayed in Troy again with my brother on Saturday night. We left Sunday morning and arrived back home about 2pm...to an empty house! Dad was at work. He worked both days we were gone. That meant there were no honey do's done while we were gone!

It was great to be back home. I arrived with a very sore throat and cough. I felt so bad today, I even took a nap. I can't remember the last time I have felt this awful. I think it was well before the kids were born. I just hope and pray the girls don't get it!

The girls got to play with some kids from our congregation after Yom Kippur services yesterday. They had a good time and we were one of the last to leave, as always! They just don't want the fun to end!

Malina has picture day at school tomorrow. She took a caterpillar from the farm to show and tell last week. This week she wants to take the Little Mermaid toy she got in her Happy Meal at McDonalds...

Janna is dressing herself these days. Most of the time she wears a tutu or some of the dress up clothes. Malina's preschool teachers get a good chuckle when they see her. There are days that we are there for 45 minutes before I convince Janna we need to leave...and most of the time I take her kicking and screaming! She wants to go to school too! I keep telling her maybe this spring! I am such a chicken. We will see how sick she gets this fall and winter with Malina bringing all the germs home.

Malina and Janna have already started the "no" and "yes" game. They like to play it in the car, of course, with a captive audience. One will say "yes" and the other "no". They are both into the tattle tale stage too. Some days it is exhausting. Janna is also into the "I'm a girl" and then naming all the girls she knows. Then she will go into who is a boy too. She is getting interested in tracing letters and doing "homework" like Malina.

On our trip this past weekend, the girls would see people on motorcycles and one of them would say, "he is not wearing a helmet. He is foolish." Or if they saw someone wearing a helmet, they would say that they were good. Scott keeps hoping they will never date anyone that has a motorcycle. He likes to start worrying early!!

Well, nothing else to report. We want our fall weather back. We have been breaking the record with temps near 100 this past week and no end in sight yet! We had such a nice start to the fall! We hope to make it to see cousin Gavin play football at Andale this season. He is a senior and they are undefeated. It is just such a late night when we do go and then we don't actually get to see much of the game with the girls along...imagine that!

Thanks for checking in on us. Janna has her monthly labs on October 17th, along with her flu shot and Hepatitis B shot and the flu shot for Malina! It won't be a fun day!! Yes, even though both girls are allergic to eggs and the flu shot has eggs in it, the transplant team, allergist and her pediatrician are all on board that they will get the shot unless they are anaphylaxis (both of them are only 10 points aaway) or they react to the shot. I am not too worried about Malina since she has had the shot since she was a baby and never reacted. I am worried about Miss Janna...she has been pretty stable with all her allergies for a while!

Wednesday, September 20, 2006 4:23 PM CDT

Janna and Malina went horse back riding on a real horse Saturday. Thank you Kathy for being so patient with our girls. She is a co-worker of Scott's at Boeing. We could hardly pry Malina off the horse. She loved it, like she does all animals. Janna took a cursory ride and that was enough. Even Scott and I got on the horse. Oh yes, I will post pictures soon! They had two kittens too. Everyone had a good time, in spite of the wind blowing 40mph! Okay, maybe not that high, but it sure was windy.

Malina now has Sunday school every Sunday morning from 10-12. She loves it and they do a lot of crafts. She now has something going on every day of the week EXCEPT Thursday! She loves preschool and her dance and theatre class. We have a hard time getting Janna out of the classroom. Most days Janna wears her "play" clothes or tutus while we are out and about. I don't know what she will do when it gets colder. She dresses herself most days. She really wants to stay, but you have to be four! She has another two years to go!

The girls had a babysitter Sunday night. A real live teenager. The girls love Claire and couldn't wait for her to arrive. They had a blast and were still up at 10pm when we got home!

Janna's labs were pretty good on Monday. Her white count is down, but that is understandable just getting over strep. She will be finished with the awful tasting medicine on Friday. All of her liver enzymes were down, which was great. Her prograf level was higher than they want it to be at 7.9 (2-4), but again, it may be due to strep and the way her body is absorbing the prograf while fighting the strep. I haven't heard that they want to reduce the dose. Next month she will have her third MMR shot (repeated shots since she held no immunity) as well as the flu shot. Yes, they will both girls the flu shot since they are not anaphylaxis to eggs, but just a high allergy reading. Malina has never reacted to the shot and she has had it every year since birth. I really want Janna to get the flu shot, but don't want to deal with any reaction that might come with it. I know it will help her get through the winter.

Scott is busy working and working. He broke the news to us this week that we probably won't get our vacation in early NOvember like we planned. I am opting to go for part of the week instead of all the week since we won't get any portion of our deposit back!!! He also told us he probably won't get his usual break between x-mas and New Year's!

I have been busy carting Malina here and there. It is great to be out and about. I feel almost like normal! I do have a seminar this Friday. I have to keep my continuing legal education hours to keep my license current. Janna and I have been going to the office every Tuesday while Malina is at dance class. At this point, the pictures are all hung and all but two boxes are emptied. The sad thing is that the office has been in disarry since they moved almost TWO years ago! Oh well, there are priorities in life!

Thanks for checking in on us. Keep the liver kids in your prayers. There are several going through rough times and some with recent transplants and others waiting and waiting for a liver...then think ORGAN DONATION!

Wednesday, September 13, 2006 10:08 PM CDT

Well, preschool and dance and theatre class have started and so has the influx of germs into our home. Malina and Janna both have had colds the past two weeks. Janna's seemed to last about a week and Malina's turned into a cough and wheeze that required some breathing treatments. I think we caught it early enough that she only required a few of them. She was off and running again.

Then, just when the colds end, Janna starts running a temp on Monday. She was not herself. She was so clingy and not eating well. By dinnertime, she had a fever of 101 and was out for the night at 7pm. She had a restless night, but woke up revived. Well, she crashed early afternoon and had another 101 fever. Since she had a low grade fever for two days, I took her to the doctor. She thought it was sinusitis, but wanted a urine sample too. Well, after twenty minutes of pleading, begging and bribing, we gave up. The nurse came in and swabbed for a strep culture, just in case. Well, Janna has strep. Our first and hopefully our last (ha ha). She never complained of her throat hurting at all, only her belly, which really scared me. She would always point at her liver side of her belly. Well, abdominal pain is a symptom of strep. So, after deciding against Amoxicillin because it has red dye and Janna is allergic to it, we left with a RX for Keflex for ten days. When I go to pick it up, it is ORANGE...gee, doesn't RED and yellow make orange! Oh yes, there was red dye in it. So the pharmacist, who we know well, went through some options and found an Amoxicillin that had only yellow dye. Of course by then the doctor's office was closed, so she had to wait for a call back to okay it. So, that was yesterday's news. Now Amox for ten days. She is so much better today. She still has a low grade fever, but nothing high to warrant any more medicine. Now we are in a whirl about getting dye free Tylenol as well. There is no place in Wichita that carries it. We had to split a Tylenol pill to get her the right dose and cover it with honey before she would swallow it. Yes, I did find some on the wonderful internet. We should have it in a few days.

I guess I should back up. We tested Janna for banana allergy and red food dye at the last lab draw. It took about ten days to two weeks for the results. Yes, she is allergic to both. She is in class 3 for banana and in level II for red food dye. For some reason, the red food dye is on a different grading scale. We have been avoiding these two groups since May, so it is nothing new, just confirmed. We only check foods when Janna lets us have extra blood since it takes 1ml of blood per food. That is a lot of blood on top of two vials for her normal monthly labs.

We finally heard from Omaha on the allergist's opinion. He would recommend putting her on Zyrtec daily. He is open to see us.....well, do we want to drive six hours one way to be handed a RX for Zyrtec?? At this point, (knocking on wood) she has had no reactions since the pancake syrup at the end of July. If she starts having more reactions to "safe" foods, then I will consider it. For now, we will leave her Zyrtec free...and I already have a filled RX for Zyrtec from the local doctor. For now, she is just taking her prograf (anti-rejection) morning and night. Yes, that's it!

The weather has been beautiful here. The girls have been riding their bikes and playing outside. I don't feel the same fear of the sun as I do in summer. We have to keep Janna well protected from the sun because she is at risk for skin cancer because of her anti-rejection med. We have been to the farm and the girls love to play with the cousins. We have been to many places this past month, so maybe I was pushing it with Janna's health. I know you can't avoid it forever, but I do feel guilty that she is sick. I know this is only the beginning, but I still feel bad. We have been out loafing while Malina is in class. Janna just loves it. She is getting to the point that she doesn't want to stay in the stroller though. I can usually keep her in there half of the time and then let her out the last half. She does pretty good hanging on to the stroller as we walk. I will never forget walking through the lingerie dept. of a store and she belts out quite loudly, "mama, look at all these boober covers!" There were a few laughs from some ladies. We just kept walking as she was saying "red ones, blues ones and white ones...." It was a cute moment.

Janna has her monthly lab draw on Monday. I sure hope her liver numbers go back down. They have been on a slow upward trend these past few months and I don't like it.

We wrote and sent pictures to the donor mother in May and again in August on the anniversary, but have not heard from her since her first communication in March. I hope she is doing well. I would love to hear from her.

Please remember organ donation. A little liver friend lost her fight waiting on the list and thousands are waiting...

Tuesday, August 22, 2006 6:02 PM CDT

Things have certainly slowed down at our house, which is a good thing. Janna had her monthly lab draw yesterday. We even received the results the same day. That almost never happens! Her labs were okay. Her white cell count is still low. We are hoping it will come up into the normal range now she is off the Bactrim. Her BUN and creatinine are always low and still are, which is much better than being high. The prograf (anti-rejection med) is really hard on her kidneys. All her liver enzymes are up, but just by 6-7 points, still in the normal range, but I hate when they all go up! Her prograf level was the same as last months, so that is good also. So, on to next month’s labs. The nurse was sorry to learn that we will only be there for lab draws and well child visits. She is really good with Janna.

We had another sleepover at Grandma’s last week. Scott ended up being out of town all week, so it didn’t take much convincing to go hang out at Grandmas. It was just us overnight. Then the girls had a blast at a Bat Mitzvah this past weekend. They danced and danced at the party. We didn’t get home until 11pm!!!! Malina was “hanging out” with all the teenagers instead of kids her age. She really wanted to be where the action was. She learned a lot of new dance moves! Sunday we attended a dedication in honor of my dad in Andale. Then we all went and ate pizza with the family. Luckily that is what I brought Janna to eat, so she was happy to eat at a restaurant.

Malina starts preschool tomorrow three half days a week. She is so excited. I am not so excited about the new germs that will be entering our home though. She will start tap and ballet classes after Labor Day one night a week. She wants to try tap and ballet instead of going back to gymnastics class. I will be looking into a music class for Janna. She really enjoys music. Tomorrow we will get to play on the new playground at our congregation. Scott spearheaded the efforts and the girls can’t wait to try it out. I hope it won’t be 110 tomorrow!

We are still waiting to hear from Omaha about putting Janna on some long acting anti-histamine to help control her food allergies. Well, it will be four weeks this Thursday since we were there. She hasn’t had a reaction since then either, so I am in no hurry to start a med.

Thanks for checking on us. Sending prayers for a safe and healthy school year!

Monday, August 14, 2006 10:22 PM CDT

What a great day it was! We had well over one hundred family and friends at Janna's Open House on Sunday. The girls had a blast playing all day until the last child was carried screaming and kicking from the house. Thank you to all who came and celebrated with us and also honored the memory of Jonathon, Janna's angel donor. We are so grateful for the courageous and selfless act of Amber, his mother, in donating his organs. I hope we can meet some day. I know it was a busy weekend and some of you could not make it. We hope you can stop by and see us!

I had put together a photo album, actually it was almost two full albums of Janna's Journey. I started with pictures of her when she turned one and then had one picture of her each month until her transplant. Then I had a picture of her the two days before her transplant. Wow, was her belly huge. How quickly you forget. I do remember that her waist measured 25 inches when her ascites was at its worst.

I also printed out the chronology of her "medical life" from birth that I posted in the previous journal entry. Janna has sure been through a lot in her two and a half years of life. She sure is a happy child even with all she has endured.

So, people ate and drank and talked and talked and talked. So sorry, there are no pictures of the actual party. We decorated with green balloons and had a huge "Donate Life" flag hanging across the garage door. Scott and I were much too busy to take pictures, and yes, I know we should have asked someone to take them! BUT, we did get pictures taken in our Donate Life shirts. In case you can't read the shirts: Janna's says: A Liver Transplant saved my life. Be a hero. Be a donor. Malina's says: An Organ Transplant saved my sister's life. Be a hero. Be a donor. Our shirt says: An Organ Transplant saved our daughter's life. Be a hero. Be a donor. By the time we left the studio, everyone there knew about Janna and her transplant. It really made an impact. We will be ready to wear our shirts in April during "Donate Life" month.

Janna summed it up by telling people that it was her liver's birthday and this was a liver party. She was a bright spark zigzagging in and out of people looking for Mom, Dad, Malina or Grandma.

We were touched by all who came to celebrate, the thoughts and sentiments either said or written and just being together with family and friends. We have been through a lot in the last two and a half years and appreciate all your support and prayers.

Janna has her monthly lab draw next week. We still haven't heard from Omaha in regard to starting her on some long acting antihistamine. Oh yes, I have contacted them! Malina starts preschool in a week and tap and ballet in September. Janna wants to go to gymnastics class like Malina did last fall and spring. "Just drop me off" she told me today!! She isn't a baby anymore, that's for sure! Scott is back to traveling and is out of town all this week. What a time to be traveling! We miss him! Prayers for all the liver kids.

Wednesday, August 9, 2006 0:19 AM CDT

HAPPY TRANSPLANT ANNIVERSARY JANNA!!! Prayers to Jonathon’s mother and family. You are in our thoughts and prayers on this special day. We thank you for your selfless act of donating your liver so that Janna could have a chance at life! We are forever grateful.

Whew, what a weekend. This is the first time I have been on the computer since early Friday. I didn’t know that it wasn’t working until I tried to post on her anniversary (Tuesday, August 8th), so sorry for the late news! We went to the Summerfest in Andale on Saturday. The girls collected a lot of candy at the parade and spent the rest of the day trying to stay out of the hot, hot sun! Sunday was the slumber party at Grandma’s house. The girls didn’t get to bed until midnight! It was a long day Monday. They both took a three hour nap on Monday. Then Monday night they both had swim lessons.

For Janna’s anniversary, we sent two green balloons to heaven--one in honor and memory of Jonathon, her liver donor, and the other for all the liver angels in heaven. The four of us then went to the WIGGLES concert. The girls had a blast. They were singing and dancing with the Wiggles. Luckily it was an early show so we were home in time for bedtime. They were both so keyed up all day, they did not take a nap.

This Sunday we are having an Open House to celebrate Janna’s one-year anniversary and to honor the memory of Jonathon. We will release more balloons with family and friends. So, this week we are cleaning and cleaning and baking and baking.

Here is a recap of Janna’s life. We hope and pray for many more years of smooth sailing. She is sure enjoying life!! I will be posting pictures of her transplant, so be warned….

Janna’s Journey

January 15, 2004 – arrived in this world
March 11, 2004 – lab at Wesley (5.8 direct bilirubin)
March 12, 2004 – Children’s Mercy in KC for labs, ultrasound & Dr. Daniel (GI)
March 16-18, 2004 – liver biopsy, 24 hr. HIDA scan
March 19, 2004 – confirmation of biliary atresia (liver disease) and Kasai surgery
(63 days old) 6 hour surgery attached portion of intestine to liver to drain bile
meds: steroid, Zantac, ADEKs, Ursodiol, bactrim
March 25, 2004 – discharged (4.6 bili)
April 6-10, 2004 – admitted to Children’s for suspected cholangitis
Labs, ultrasound, PICC line 3 weeks (3.2 bili)
May 2004 – 2.3 bili
June 25, 2004 – 1.0 bili (NORMAL)
July 5, 2004 – fever/labs at Wesley ER
July 7-14, 2004 – admitted to Children’s
Labs, ultrasound, PICC line 3 weeks (enterrococcos bacterial infection)
July 13, 2004 – 0.8 bili
July 22, 2004 – started Atarax for itching
October 12-14, 2004 – admitted to Children’s for EGD (esophageal scope) & liver biopsy
Diagnosis: portal hypertension, severe splenomegaly, varices
Meds: propranolol, Prilosec
December 4-7, 2004 – admitted to Children’s for suspected cholangitis
Labs, ultrasound, PICC line 3 weeks
December 23, 1004 – started Aqueous A for vitamin A deficiency
January 28, 2005 – started Lactulose for constipation
February 2-3-, 2005 – admitted to Children’s for EGD (#3 long, #2)
February 25, 2005 – started Aldactone (diuretic) for ascites
**started the process to be evaluated for transplant
March 17, 2005 – started Lasix (stronger diuretic)
March 22-23, 2005 – transplant evaluation at Children’s (labs, ultrasound, hemiskeletal
x-ays, CT scan, GI and transplant surgeon consults)
March 23-24, 2005 – admitted to Children’s for transfusion due to anemia
March 25, 2005 – started iron for anemia
June 9-13, 2005 – admitted to Children’s for suspected cholangitis/bile lakes found
Labs, ultrasound, abdominal x-rays, CT scan, PICC line 3 weeks
June 16-17, 2005 –second opinion/transplant evaluation at UNMC in Omaha
Labs, ultrasound, psych eval, dev assessment, transplant surgeon consult
June 23, 2005 – placed on the UNOS transplant list
August 7, 2005 – 9:20 pm “the CALL” from Omaha—a liver for Janna!
Janna went without food and water from 8:45 pm until pre-op IV (19 hours)
August 8, 2005 – 4:15 am arrived in Omaha
3:10 pm Janna went to pre-op
4:10 pm transplant surgery started
7:45 pm Janna out of surgery
8:30 pm Janna in her room in PICU
August 13, 1005 – Janna out of PICU and on pediatric floor
August 15, 2005 – Janna discharged from hospital
August 23, 2005 – staples out
September 8, 2005 – Janna released from Omaha
September 9, 2005 – Janna and family arrived HOME!!
November 2005 – Janna started having GI issues
December 2005 – Janna diagnosed with food allergies
Eggs, wheat, dairy, nuts, soy and legumes

PRE-transplant Janna was diagnosed with: her meds PRE-transplant

Portal hypertension ADEKs x2
Severe splenomegaly (13 cm spleen) Usodiol x2
Esophageal varices (grades 2&3) Bactrim x2
Anemia Propranolol x3
Ascites Prilosec x1
Vitamin A deficiency Atarax x1
Low platelets & WBC Aqueous A x1
Itching Lactulose x3
Bile lakes Aldactone x2
Iron x1
18 doses of meds a day

POST-transplant

Janna started out on DAILY lab draws, then every third day, then weekly, then every two weeks and is now currently once a month. She will have labs draws at least every three months the rest of her life. She will be followed by a liver transplant team the rest of her life.

Meds:

After transplant Janna was taking:

Bactrim (Mon & Tues only) stopped at one year
Magnesium (stopped in October)
Calcium carbonate (stopped in August)
Prilosec (stopped in August)
Prenisolone (steroid) (stopped in March)
Acyclovir (stopped in November)
Norvasc (stopped in April)
Lasix (stopped in September)
and
Prograf (anti-rejection) FOREVER—this is the only one she is on now!!!

Monday, July 31, 2006 11:09 PM CDT

We are back from our fast trip to Omaha for Janna’s ONE-YEAR post transplant check up. (The top photo is Janna waiting on the exam table in Omaha with Oliver, the liver bear) We left Thursday morning at 8:45 am and were home by Saturday at 8:15 pm. I have to admit, it was a much more comfortable ride in the mini-van as compared to the SUV. Scott will be glad to see that I admitted that, even in writing!! We had plenty of room to take everything we wanted and room for all of Janna’s food. We planned the trip so that we would arrive just in time for the appointment. We did arrive early, but they were ready for us. We stopped at some of Janna’s favorite places on the way—the fish tank in the pediatric clinic, the glass elevator and, of course, the escalators. I think she remembered being there from her reaction. We saw our favorite receptionist at the Clinic, Toni, and took some pictures with her.

The nurse did the usual weight, height, blood pressure and temp. Then we waited to see the nurse transplant coordinator. Thank goodness, it was our favorite, Patty. We talked about the past year, the med changes coming up, what to expect with her prograf level and then the much dreaded food allergy issues. We then saw Dr. Antonson, the GI there instead of a transplant surgeon since Janna had allergy issues. We talked at length with him about the issue. I was prepared for a fight, but there was NONE. He acknowledged the link between prograf, young age at transplant and food allergies. He is going to consult with the immunologist before prescribing some antihistamine (Singulair or Zyrtec), but he does want her on some daily med to help reduce her reactions. We sure hope it works for her. We will find out sometime this week. I did give Dr. Antonson the research other liver moms (thanks Lisa and Aunt Amanda) had gathered. He looked at them all and pointed out that one doctor had been at Omaha and another he knew well. I did tell him that I thought I was not going to get any help due to a phone call with another transplant nurse at Omaha when Janna was first diagnosed. He seemed surprised that I had received such a response. Oh yes, I named names. This transplant nurse has been nothing but short and condescending in her phone calls and e-mails. Back to Janna…he was really happy with her growth. He did for a second, feel her liver and spleen, but there was NO SPLEEN to feel! That was great news. She will stop her bactrim at one year. Her prograf will remain at 1mg twice a day. They want her level measurable, which will be above two, but not much above that. It has been running 3-4. That is a really good thing, as long as her liver is happy, because that is the lowest level possible for her right now. She will continue with monthly labs. We don’t go back to Omaha for a year!!! She will see her local pediatrician for her well child visits and that is it! We know all the what ifs, but we will ignore that until and if…

We did spend Friday at the Omaha Zoo. It was very warm, as it is in Wichita right now. We are still in the midst of 100-degree days. I made a bad decision to see the Deep Sea in 3D at the IMAX theater at the Zoo. Well, suffice it to say that Scott had to take Janna out before the show was half over, but she wasn’t the only child who left. Why do they have to show sharks and larger fish eating other fish with the Jaws music in the background. I was even jumping at some of the scenes! Chalk that up to a bad decision. The pictures of the us in the 3D glasses is a hoot. I will post it soon! The girls got to ride the steam engine train and the carousel a few times. That is what Janna wanted the most, but she complained that the train was too loud!

We found out where NOT to stay in Omaha. With Janna’s food allergies, we needed a room with a kitchen, at least a refrigerator and microwave. Well, that is what we got! There was no silverware, no plates, no nothing, but the refrigerator and microwave. We can cross the Doubletree off the list! The girls did have fun swimming in the indoor pool and just walking around. Most meals we would order food for us and I would warm something for Janna. She was a real trooper and did not complain one bit. We had breakfast the morning we left at a restaurant. I brought some of Janna’s cheese and pancake with us. All she needed was the syrup, why did I need to bring that, right! Well, wrong! She ate about half of it and then began spitting it out. I thought she was full. Well, by the time she got to the van, she had a red, red rash on her face and hives. Benadryl stopped the reaction, but I was so mad at myself for not thinking that the syrup might contain a dairy derivative with the flavoring! I guess next time I will bring ALL of her food!

On the way home, we stopped at my brother’s house in Troy, Kansas. It was about 20 miles off the highway and a great break in the drive home. He and his wife, Natalie, have the newest cousin, Tia, who is three months old. It was fun to stop and see their house and get to hold and spoil Tia some more. We don’t get to see them often.

Oliver, the liver bear, has been at our house for the past two weeks. He went with us to Omaha too. He is on his way back to the KC area to stay with another family. He will travel around the US visiting liver families until the Transplant Games next year. We sure had fun taking him to Camp Shalom, the Zoo, the Little Red Hen, Grandmas house, where he got to drive a tractor, swimming and just playing with the girls. What a great idea one of the liver moms came up with.

Janna starts swim lessons for two weeks with Scott. She is really looking forward to lessons so that she can be just like Malina. Malina continues with her swim lessons. She will start preschool on August 23rd, three afternoons a week. She is looking forward to it.
The younger cousins are having a sleep over at Grandmas house this weekend. The girls are looking forward to it. Malina was the one with the idea. She wanted to stay at Grandmas like she did last year when Janna was in Omaha during her transplant. I just wouldn’t agree to TEN days. One night will be enough. My sister, niece and I will be the overnight counselors! Scott will get to spend the night by himself at our house! Saturday we will be going to Andale for the annual Summerfest. The girls can play games, play in the park and swim. Their favorite is the parade for obvious reasons! I will have to have a bag of safe candy for Janna!

Janna’s ONE YEAR is fast approaching on August 8th. We are planning on releasing balloons that night and then going to the Wiggles LIVE that night. Both girls love the Wiggles and who knows when they will be back in town. Then on August 13th, we are having an Open House to celebrate her one-year anniversary and honor her donor and his family. We hope to see you there! You know what I will be doing…cleaning and baking and cleaning what I just cleaned! Thanks for checking on us!

Wednesday, July 26, 2006 3:09 PM CDT

Janna had her monthly lab draw on Monday. All is well. Her AST (a liver enzyme) is still out of the normal range, but not by much. Her red cells/hematocrit/hemoglobin are all in the high range again, not by much, but still in the high range. Her white cell count is low again at 3.9, which makes her ANC a lot lower. Since she has had a cold/cough/runny nose for the past week, it was no shock. She also had two shots Monday (hepatitis A and B). One in each leg. She was not happy! No extra blood was drawn to check allergies. I told the nurse too late since Janna was really fighting the draw this time. So, we will check next month. She will have her last Hepatitis B shot in October and the titer will be checked. Hopefully, the shot will "take" this time. If not, our pediatrician does not want to try again.

Janna's foot was x-rayed again on Monday since she was still not putting her full weight on her foot. They sent it off to a radiologist. They said all they see is soft tissue swelling. They want us to try and keep her off it--yeah, right. Anything else!! It will take time. Maybe it is good we are taking a long road trip.

Some good news from our insurance plan...NOT! When I get Janna's prograf (anti-rejection) med this month, the pharmacist said our insurance will only allow 100 capsules of prograf per draw. That won't even cover one month of her med!! I called our insurance company to verify and sure enough, that is what Scott's employer bargained for! Now, when we would have found out from our company, that's another story! So, now we will get mail order and be able to get a 90 day supply. There is always something!

Janna is feeling better, although she had a tough day yesterday. She complained of a tummy ache most of the day. By dinner time, she seemed better. She feel asleep on the way home from Grandma's at 6pm and stayed asleep when I brought her in the house. She then woke up with a tummy ache again. She was so restless. She went back to sleep and even took her prograf and rice milk while she was asleep. Then she woke up again about thirty minutes later to another tummy ache. This time she threw up. Whew, it was long enough I didn't have to redose her prograf. She felt much better after that. Today she is back to herself! Who knows what was going on!

Malina finished Camp and is lost this week. Every morning Janna wakes up and wonders "where are we going"! Malina still has swim lessons Mon-Thurs for the next three weeks. Then she will start preschool three afternoons a week. She is really looking forward to school. I read her the list of what she needs to bring to school. She was just smiling wider with each item! My baby girl is growing up!

We are leaving for Omaha in the morning for Janna's one year transplant evaluation. It will be a long trip (5-6 hours) but the girls are ready to go in the mini-van. They have a lot more room for all their stuff and can see a lot better out the windows. They are busy packing their backpacks with books and toys. We hope to see another Liver Family (Jackie & Trey) while we are there, IF they haven't been released to go home. He is a six month old who was transplanted earlier this month.

Oliver, the Liver Family bear, will accompany us on the trip as well. He is the traveling bear from the Liver Family Forum. He has been with us almost two weeks. He has been one busy bear. I think he will need a vacation at the next stop. He went with Janna to her lab draw, the Zoo, to Grandma's and rode a tractor, shopping, a show, etc. He will travel to KC (get ready Leah and Alexander) to another liver family when we return.

When we return from Omaha, we will be getting ready for Janna's Open House on August 13th. We hope a lot of you will be able to make it. We would love to see YOU! I hope we have cooler weather. It has been over 100, even 110 one day, here in Kansas. Now, that's hotter than normal for July!

We hope we have all good news when we return from Omaha! We are looking forward to the Zoo and the Children's Museum. I had better get back to packing. Yes, we have to pack ALL of Janna's food, as she cannot eat out. I sure hope she outgrows these food allergies!

Sunday, July 16, 2006 10:55 PM CDT

That's what I get for updating...Well, Malina started running a fever the night of July 10th...after I just posted an update!! Then a cough and by the weekend, the cough was unstoppable. I took her to the doctor on Saturday. She is now taking Xopenex and Pulmicort through the nebulizer, Augmentin and Delsym. The doctor thinks she has sinusitis. We had to call the on call dr. Saturday because her coughing was getting worse. He wanted her to have breathing treatments even if she wasn't wheezing, unlike the doctor she saw in the office earlier that day!!She was a little better today, but still coughing and needing the breathing treatments. She missed two days of Camp last week and at this point, I am not sending her on Monday. She is finally able to get some rest without coughing. I think she is so exhausted from all the coughing.

You guessed it, now Janna had a fever on Friday night. She even took a nap the last three days, which is a miracle. She had another fever tonight. It is right under 101 and comes and goes. I will call the transplant team in the morning about the fever. They may want labs. She has no other symptoms. I also have to take her to the doctor on Monday if she is still limping. She was wearing some dress up shoes and started to run and fell and twisted her foot. She is not putting much weight on it right now.

I will post when I know more. We just want our healthy girls back!!

Monday update:
Omaha wanted Janna checked out since she has had a low grade fever for more than two days. We went and nothing was found. If she does have another fever this week, we are to draw labs and also check her viral load for EBV, which scares me!! Otherwise, she will have her monthly lab draw next week as scheduled. The doctor took x-rays of her foot and found no fractures or breaks, which is good news!

Malina stayed home from Camp today. She is still coughing and needing her breathing treatments. I hope she can return the rest of the week since this is the last week.

They are BOTH taking a nap again today. That is FOUR days in a row...

Monday, July 10, 2006 3:37 PM CDT

Okay, okay, okay, I guess it has been THREE weeks since I last updated! The summer has been busy.

Janna's repeated allergy labs were not good. All of them tested (wheat, eggs, soy) were all up, except soy, which was down by one point. Her egg allergy was THREE times what it was in December. She is not in class 5 and not many points from being in the anaphylaxis class, which is a scary thought. So, we didn't get any food back. She will be tested for red food dye, bananas and onions at the next lab draw. She has had a few reactions, but nothing bad. She was helping me bake and I think she got some flour on her skin, so it was more of a slight rash. I will have to let her cook with me only when I am making her food. She did help make her pancakes and oatmeal cookies this past week. Today she had a reaction when Malina touched her after eating a peanut butter sandwich. She had welts on her back and arms and everywhere she touched her! That is the first time she has reacted to contact OR we have been awfully lucky.

The past two weeks, Janna and I have been busy shuttling Malina to Camp every day from 9-12. Some days we go to the activities, other days we just shop and run errands, BUT we don't go home. In fact, if I do turn toward home, Janna starts to tell me that she is not ready to go home. Malina is having a GREAT time at Camp. It only took three days before she woke up with a cold. Luckily it was close to the weekend and she didn't miss Camp. She did have to have some breathing treatments over the weekend to get rid of the nasty cough and wheezing. Of course, Janna followed with a runny nose and flying snot! She didn't have it long though. We have another two weeks of shuttling Malina to Camp and then she is through. She will sure miss it. Janna and I are going to join them at Exploration Place, the Nature Center and the Zoo before it ends.

Malina had two weeks off of swim lessons and will resume again next week. She is really progressing. She is in level three, but I think she will be there for a while. We hope to get Janna in some lessons before the summer ends. I am waiting a while longer since most kids in her class would be wearing swim diapers and we have to be careful about bacteria. Both girls love the water. I will post some of their swimming pictures. We have access to our neighborhood pool and try to go later in the evening to avoid the sun.

This past weekend we were at a nephew's wedding. The girls had fun dancing, dancing and more dancing. They sure slept well that night! We saw a lot of cousins and this was Janna's first big outing...there were hundreds of people at the wedding. Yes, I am knocking on wood that both girls do not "get" anything from all the people that were there.

We travel to Omaha on July 27th for Janna's ONE YEAR transplant appointment. I can't believe she is nearing that mark!!! We will see the Omaha Zoo while we are there and the Children's Museum. Janna has her labs on July 24th, right before we leave.

We are planning an Open House to celebrate Janna's gift of life, her first anniversary and to honor her donor family. It is scheduled for Sunday, August 13th from 1-5pm. We look forward to seeing lots of family and friends!!

Yeah...I am still driving the mini-van. Janna has her marks on it already. She was "driving" the van while I was unloading groceries and while I was in the kitchen putting the bags on the counter, I hear the garage door closing!! Well, it went up and down with the hatch before it stopped. There are a few scrapes and scratches to go along with the shopping cart that hit the hatch while we were shopping at Walmart the FIRST day I drove it. I think it is a sign that I should not be driving a van!

Thanks for checking on us. Enjoy the summer!

Monday, June 19, 2006 10:29 PM CDT

I should have known better...the day after I posted that Janna was allergy free for eighteen days, it happened again! My brother, wife and new baby, Tia, were visiting and Janna had a bite of a banana as they were leaving. Now mind you, she had almost a whole banana YESTERDAY and she was fine!! She started scraping at her tongue and that was it. About thirty minutes later, a little rash. Then came dinner, by then she had a rash all over her chin and face. She was really bothered by it. I gave her some Benadryl. About fifteen minutes later, she asked if I could hold her head. She was asleep at 6:40pm in the middle of dinner! I woke her up at 8pm for her medicine and milk and she went right back to sleep and slept until 7:30 the next morning!! The whole reaction occurred in about an hour. It really wiped her out...plus the fact that she takes no naps now. I knew I should not have posted and jinxed it all!!

Last week I took her to the pediatrician because of a rash on her face that would not go away. She woke up last Thursday with a rash on her face and it got worse as the day progressed and then better and so on. I gave her Benadryl and that stopped the itch, but it was still there. I put some Cetaphil lotion on it and then the cream and a bath, but nothing seemed to get rid of it. So, off to the pediatrician. We saw the PA, who was new and I think a little scared to see Miss Janna due to her liver transplant, so she called in another dr. to take a look. The doctor thought it was just a true allergic reaction and nothing more. By that time, the rash was on the other side of her face from her chin to her eye and her eye was even swollen. He prescribed some Zyrtec once a day to alleviate it.

The next morning she was eating oatmeal and she had another rash. Not knowing if I could give her some Benadryl on top of the Zyrtec, I had to call the pediatrician again. Janna was really itching by now. The nurse told me that I have to limit the Benadryl due to the fact that the Zyrtec is in her system all day due to the one dose, but if I have to give it to her, try to spread it out! Like I can control when she has a reaction!! So I asked about a cream for the itch. So, I used some calamine lotion because I didn't have any cortisone cream to stop the itch and it really helped her. The rash went away by the end of the day. If the Zyrtec does not help, we have to switch her to Claritin, but so far, she has had no other reactions. We see her pediatrician tomorrow, so we will discuss the game plan. I really think she had a case of dermatitis and not a food allergy this time, but what do I know! So, we are back to being extra careful...100otton clothes, double rinsing her clothes and sheets, Cetaphil soap and cream, her HEPA filter runs all the time too!

Yes, it is time for Janna's monthly labs and checkup tomorrow. We are keeping our fingers crossed that all is well. She will start her series of three shots for the hepatitis B shots. We hope she holds the titer this time! She has really only had one food reaction and the face rash in the last month. Other than that, it has been pretty quiet.

Against my will and better judgment, today we became owners of a Honda Odyssey minivan. I swore I would never drive one, or a stationwagon, but I have given in. We traded Scott's car. He will drive my SUV and I will drive the minivan. I guess never say never! I am sure I will grow to love it like all the other minivan drivers out there!

All of us went to a movie on Father's Day. We saw Cars. It was really good. It was much too loud though. I kept my hands over Janna's ears on all the racing scenes and I noticed that Malina did too. It was much too long for Janna. She fell asleep the last thirty minutes. Malina sat on the edge of her seat during the whole show. Scott laughed and laughed. It was just as much fun for adults as it was for kids. We got home in time to make dinner. Malina really likes to help and was getting out the pan to make our oven baked fries. She said out of the blue, "Mama, this pan is rustier than Mater". Now you would have to see the show, but Tow Mater is a very rusty tow truck on the show. She made Scott and I laugh at that comment.

We sure miss Grandpa. Today he has been in heaven for THREE years. My brother, Denis, has been in heaven for 22 years as of Friday. June is not a good month for our family.

This week Malina has "just" swimming lessons. She has progressed to level three and is doing well. She had a bit of a breakdown tonight when she went for her first lesson at the new level and was in a class with THREE boys and the instructor was a "boy". One of her former instructors saw her and talked to her and she perked up right away. She was fine by the end of the class. She told me that at first she thought the "boy" was too mean!

We hope to go to the farm on Wednesday, but they are already done cutting wheat. Janna will have to wait for the corn or milo harvest for a ride in the combine. Our plans for Thursday are to meet the Magana girls for a fun time at a sprinkler park. Friday we want to see The Three Little Pigs live on stage. The girls really like the live shows!

***lab update***
Janna's labs were almost identical to last month. Her white count is still low at 4.8 and her platelets dipped to 154,000 (low is under 150,000). The good news is that Dr. Chavez could not feel her spleen, so she may be one of those kids that has a low platelet count and will bruise easily. If you could see her, it makes sense. She has a sideboard on her bed and always seems to hit it before getting into bed. Her shins are bruises all over. Her liver enzymes were up a few points. Her AST is still high at 38 (normal is under 32). Her bili is still at 0.7 with the direct at 0.2, which I don't like. I hope it comes back down. Her prograf level was 3.7, which is a little lower than they want. They normally don't change the level based on one lab, but she may have a repeat lab before a month. We will see if Omaha calls.

Her checkup went well. She gained a pound this past month. She is getting taller and now wears mostly 4T clothes. She had only one food reaction and one rash this past month. She got her first hep B repeat shot and was not happy about it. I had to bribe her with going to Petsmart. We call it our East side Zoo. They are rechecking her RAST for banana, wheat, soy and cow's milk to see if she can get some food back. We are not too hopeful...especially since her EOS is up to 16nd should be under 4ight now. There are no other vaccinations titers he wants to check. She started to take Luride, a fluoride pill this week since our water is not fluoridated and Omaha approved it. He stopped the Zyrtec daily. She is to take it as she needs it, which is fine with me.
The girls will continue to enjoy the summer!

Thanks for checking on us. We will post after the results of the lab draw.

Thursday, June 8, 2006 12:47 AM CDT

Let me tell you first, I am knocking on wood as I type this…Janna has not had an allergic reaction in 18 days. We are celebrating quietly. She has even had some of the same foods that caused the last few reactions and was fine with the food (watermelon & grapes). So, I don’t know if her Ige level was so high she was reacting to a lot of different foods during this time, but we are still living one food at a time. She has had two colds back to back though. She was so congested with a runny nose and had a horrible cough at night. I fully expected some nights to find vomit, but didn’t. Benadryl seemed to help her at night, but there was one night I had to give her an albuterol treatment through the nebulizer to get her some relief. She is just now getting over the last cold. These spring/summer colds are worse. So, she has missed some family get-togethers as I am keeping her from large groups again.

We are done with naps at our house, unless they happen by accident. Janna has not had a nap in about three weeks now. I was driving myself crazy and had tried everything by the time I gave up on her naps. I tried putting a gate up, she would then all her drawers in her room and play the whole time. I would even try and sleep with her. Yes, you guessed it. I would be asleep and Janna would never doze off. Malina takes a nap every now and then. She needs much more sleep than Janna. I also keep track of Janna’s sleeping and noticed that she was sleeping the same amount whether she napped or not. Her naps were 45 minutes to an hour when she quit taking them. So, I keep telling myself, even though Malina napped until she was FOUR, Janna didn’t make it to 2 ½. She is also sleeping through the night more and more, which is a good thing for ME! I will take all the sleep I can get! Some nights she gets quite crabby by 7pm, but we have to wait until 8pm for her meds.

The girls are sure loving the summer. They love their wading pool and we also have access to the neighborhood pool, but I am holding off taking Janna until she is over this cold longer and she is closer to one year post transplant. We are at the ten month mark already. I can’t believe it! She has labs again on June 20th and it already seems like forever, which is a good thing! She will also have to repeat her hepatitis B shot series (three shots). I have been told by other liver moms that some of their kids have received the hep B series numerous times and their child still has no immunity!!

Janna went to her first indoor movie. I about choked at the ticket price of $6 for a matinee. You can tell I haven’t been to a movie in a while! We went to an exotic pet store and the girls loved it. They are really into animals. Malina knew some of the animals before I could tell her…and some of them I didn’t know!

Malina is taking swim lessons this summer and that is keeping us running. She really enjoys them, so she will continue throughout the summer. I held my breath the first time I saw her swim from one side of the pool to the other. Next week she has art classes in the afternoon. I am trying to prepare her for preschool this fall…a little bit at a time. I know Janna will miss her, but we will have fun together, just Janna and I.

Wheat harvest is in full swing at my Mom’s. Malina even rode the combine with my brother and cousin. She really enjoyed it. I hope to get Janna in the cab before harvest is over. It is really a fun time for us on the farm, even though we miss Grandpa dearly. He died of a sudden heart attack three years ago as they were getting ready for harvest. I was pregnant with Janna at the time and Malina was only 14 months old when he died. We sure do miss him.

Janna is our singer. She is sitting behind me on the floor as I type this just singing along with one of her musical storybooks. She usually sings a few songs while we are in the car too. I have a cute picture I will post of her with a microphone at a recent get-together.
The girls had their first teeth cleaning this week. While I was filling out Janna’s paperwork, the hygienist took Malina back to start the process. Six months ago, the only thing Malina would allow them to do was to count her teeth! By the time I was done with the paperwork and Janna, of course, had to use the bathroom, Malina was finished. She was so good. She did it all herself!! Janna sat in the chair all by herself. The hygienist was so good to her. She showed her all the equipment and told her what she was going to do. She would always ask Janna if she could do it and Janna would nod or say “yes”. So, Janna got her teeth cleaned too. I didn’t think she would sit through it, but she did. So, both girls go back in six months! Janna has to start seeing a dentist early because she has been on medicine so long and some of it is known to cause problems with their teeth and gums. So far, her teeth look good.

Other than a nephew’s wedding this summer and getting together with friends and family, we have no real plans for the summer. Scott has been working some overtime, but not too much. I have started to get out of bed when he gets up instead of waiting for the girls to wake me and I feel much better….and even get my workout in and get some things done around the house It is much easier when Janna sleeps through the night I admit! I have two hours of continuing legal education to get before the end of the month too. Oh, and how can we forget....we will travel to Omaha in August for Janna’s one year transplant appointment too. We will probably make a weekend of it since the trip is about six hours. Omaha has a great zoo.

Thanks for checking on us….

Wednesday, May 24, 2006 3:17 PM CDT

Janna's labs Monday were pretty good. Her liver numbers were all up a bit, but nothing out of range but the AST at 36 (normal is under 32). Her bilirubin did double, but is still in the normal range. Since she is still fighting a cold and now a cough, that could be why, but who knows. I am told the labs would be different every day of the week even if you are healthy. Of course, her white count is lower again too.

Her chicken pox and hepatitis B titers were checked. So, her pox was okay, but her hep B will have to be repeated. We are waiting for word whether she will have to have all three shots or one shot at a time and recheck the titer. We will continue to check titers for all her immunizations that we can.

We are also waiting for word on what our options are on her food allergies. Our local pediatrician mentioned changing her anti-rejection med to cyclosporine or putting her back on steroids, neither of which I like. He is concerned that she is having so many reactions in a short time frame. She had eight since we saw him last month. He is also afraid that they are going to increase in intensity, thus needing the epi-pen and I don't want to think about what else. So, we will wait to see what the GIs from her transplant team have to say about it. The local allergist is really no help since she has no other kids who have had a transplant. There have been kids who have been weaned off prograf for this reason, but it was not a good outcome...it caused their liver to reject. So, we will continue to watch what she eats, but the list is growing what she has to avoid. Hopefully it will be better without any changes. I am so hopeful!

Malina did get her second MMR shot since mumps is going around the state. She was not a good patient and had to be held down. It was horrible. When it was all over, she hopped off my lap and trotted off to see Dr. Steve to show him her Clifford band-aid and Hello Kitty ring. I think it will be Scott's turn for her next shot in August. The funny thing that happened was Janna was on my lap and both girls had a sucker...already. By the time Malina had her shot, we could not find Janna's sucker. As we were leaving, Dr. Chavez asked me what I was doing with a sucker stuck to the back of my shirt! Janna was so happy we found it. What a laugh!

In the meantime, Janna is as happy as she can be. She likes to sing and is usually doing just that as we are riding in the car or getting ready for bed. She knows a lot of nursery rhymes. She also likes to talk to Grandma on the phone. She can really carry on a good conversation. This is a funny one...one night I was trying and trying to get her to potty before bed. She sat on her little potty and really tried. When she stood up, she looked at me and said "my poo poo isn't working right now, Mama". I couldn't help but laugh and she was dry the next morning even though her poo poo wasn't working the night before!

Scott is out of town this week. A very unexpected trip from Tues-Fri to St. Louis. He will be home for the long weekend. I have a list of honey-dos I hope we can knock out together.

Thanks for checking on us. We hope for NO MORE allergic reactions and an uneventful month of summer fun!

Monday, May 15, 2006 4:05 PM CDT

I can't believe I made it this long without updating. Other than a cold that Janna woke up with this morning and 6-7 allergic reactions and a couple of rashes on the face, it has been a quiet couple of weeks. Janna is reacting to more and more foods. I am sure it is due to the fact that she is no longer taking steroids. Benadryl has stopped the reactions, so we are lucky there. She has her monthly lab draw next Monday and then sees her pediatrician for her monthly checkup. I will discuss the increased episodes of reactions with him then. Malina will also get her second MMR shot. I am not going to take any more chances with mumps going around Wichita. We will also check Janna's titers for chicken pox and hep B. So, she may have some shots coming up too, but I hope not.

We spent Mother's Day at Mom's on the farm. The girls were loving it, although it was a cool day. The family is putting together a recipe book, which has become a major undertaking. We spent most of the day working on it to make sure our favorite recipes were in there and there were no duplications. We have over 250 recipes right now that our family uses, so it should be a great cookbook. Marie hopes to have it to the printer this week.

Janna is doing better at night, but still not sleeping through the night on a regular basis. With another cold and being congested this week, I don't plan for any nights this week. She is staying dry at night, which is GREAT! Her latest adventure is pretending to drive any and all cars that she can get in. She loves going anywhere and I mean anywhere. She likes it that we get out more. We did see Little Red Riding Hood last week. It was a cute show and Janna was enthralled with it all. She told me she wanted to go to another show when I was putting her in the car. She is also into smelling the food that she can't eat. Then she will say that she will eat it when she is a big girl....and I hope so!!

Malina is busy these days. She has swim lessons twice a week and gymnastics once a week. I can't say I like running all over town three nights a week, but we are doing it. I don't know what she is going to think when they end the same week. We have signed her up for an art class for three hours a day for a week at a local school this summer. She just loves painting and arts and crafts. She will go to Camp Shalom for four weeks beginning the last week of June and she can't wait. They go somewhere fun 3-4 days a week. Then in August, she will start preschool in the afternoon three days a week. Janna will be lost without her. They really play together well now. Of course, they have their days, but most of the time you will find them together playing.

Scott doesn't travel again with his job until June. The bad is that they are laying off 300 people in July and another 300 in November. I hope he doesn't get a pink slip. He just changed departments in January, so he is at the low end of the totem pole these days. His car is fixed from the fender bender in April.

I decided to make Scott happy and had my hair cut short. I can't say I like it, but I supposed I will get used to it. Scott is one of those guys that likes girls with short hair! Oh yes, I have to fight to get him to leave the girls' hair long! We are working on getting our flowers planted. I know I will have plenty of help!

Thanks for checking on us. We will have more news next week after lab draws and Janna's monthly checkup.

Sunday, April 30, 2006 11:22 PM CDT

Another allergic reaction this past Thursday. So, that makes THREE allergic reactions to food in a week. She has done so well with only a very minor rash once or twice since December. This last episode was at my mother's as well. There was nothing she was eating that is a known food allergen, so she will have to be tested for some other possible culprits. My thinking though is that since she had a reaction to known foods, her system is flared and anything even remotely questonable is going to cause a reaction. She had some sloppy Joe's made from Manwich, which I read the ingredients twice and all looked fine. So, we will test her for tomatoes, onions, grapes, pineapple and bananas. She actually says that her tongue itches and hurts after eating bananas. Since she is back to monthly lab draws, I will take her in separately for this. Otherwise, they have to draw an extra 1ml of blood per food for the allergy tests.

The girls had a fun time at Grandma's last week. We had a "slumber party" as the girls called it. We spent the night at Grandmas. I helped my sister out by watching her two kids (2 & 5) when her sitter was closed on Wed & Thurs. I was exhausted. I didn't think about the playground scene--Grandma lives on a farm. There are no fences, no boundaries to stop them!! They had fun playing in Grandma's school bus, all the tractors, semis and anywhere they could get into to. The cutest part is that we all slept together with Grandma in her king sized bed. I wish I had a picture of that. Of course, there were no naps those two days!

Janna is so busy these days. They are really starting to play together a lot now. Janna likes to sing and knows many nursery rhymes and songs. She finishes sentences in some of her favorite books, knows the alphabet really well and can count to 12. She isn't good with her colors though. She is a real daredevil on the slide and fort in our backyard. She is afraid of nothing! I can't wait to put her in a gymnastics class.

Malina is still going to gymnastics once a week. Wow, she hasn't gotten any disease this past month!! What a record! She starts swimming lessons twice a week for the next four weeks, so she will be busy. She is such a reader. If I can't find her, she is in her room with a stack of books on her bed. She is starting to read some on her own. She is enrolled in a preschool program this fall three afternoons a week. She is really looking forward to it. She is such a sleeper that I didn't want to have to wake her up for the morning class until I have to.

Scott made it back from his back-to-back trips. Whew, I hope that doesn't happen for a long while. We were all glad to see him. He travels again in late May.

Our cousin finally arrived Wednesday evening. My baby brother, Steve, is now a father! I am sure he is spoiling her right this minute, and who wouldn't. Mom is there now for a few days to help in the spoiling process!

Thanks for checking on us. We hope it is an uneventful month.

Monday, April 24, 2006 10:34 PM CDT

***lab update below
I wish I could say that last week was a quiet week…Janna saw her pediatrician twice last week AND she had two allergic reactions as well. First, was her monthly visit on Tuesday. The good news is that her blood pressure medicine was stopped. We will continue to monitor it for a few weeks just to make sure and then every time we come in his office, which hopefully will go back to once a month. The bad news is that he felt something that was either her spleen again or just a stool in her colon. We will monitor that as well. Wednesday, Janna woke up with a cold…runny nose and congested. So, we stopped the HEPA filter for her allergies and started the humidifier in her room. Then on Thursday, I noticed some blood when wiping her, but not again. Then I began to notice that she was holding herself, which I had not seen before. Then she complained that it hurt when she was urinating…then her stomach hurt (possible UTI/kidney infection). It was enough for me to call and get a 4pm appointment and try to get a urine sample. Of course, I had to wake her from her nap, but I did get a sample as we were going out the door to see her doctor on the other side of town. I didn’t want to see another doctor in the practice again. So, the urine sample was fine. Then cultured the sample and again, nothing…all good news. Her blood pressure was rechecked and it was fine. He also rechecked the lump near her spleen. Now he doesn’t think it is her spleen because it is lower and there is space there…so hopefully a stool he is feeling. Of course, Scott left town Thursday morning!

Then Friday, we are at Grandma’s house. Janna’s cousin left her bag of pretzels on the floor. The next thing I know, Janna is eating them. Instead of her stopping and giving them to me like she usually does, she starts stuffing them in her mouth. She must have thought they were her pretzels and I was taking them away. Incidentally, yes, they make pretzels out of rice flour and Janna loves them. So, I waited to see if she would have a reaction. Oh YES, her came the red, red rash on her face and then on her chest. She was itching furiously. I gave her the benadryl and washed her face, hands and chest, but I did not have her Cetaphil soap and Mom didn’t have any either (another thing to carry in my already heavy bag). It took at least fifteen minutes or more for her skin to settle down. She has not had a rash this bad! Of course, that pretzel had wheat and egg, two of her highest triggers. Since it happened at Grandma’s house, I was showing Janna to everyone that walked in the door. I want them to see that this is SERIOUS business and not something we just talk about happening. I was so mad, but mad at myself for letting my guard down for even a second!! She shouldn’t have to go through this.

Then Sunday, she is eating lunch and then some fruit salad. All is well until she is starts biting the grapes and the juice trickles down her chin and then onto her chest. She took her shirt off after the main course. She said it was dirty. Not two minutes later, she is fire engine red again. Not as bad as Friday, but itching and hives on her chest. It could have been the strawberries or oranges, but my bet is the grape since it was the last thing she was eating. Again, some benadryl and I used some Cetaphil soap to wash off her hands, face and chest. It really helped to calm her skin. Her rash was gone a lot quicker than on Friday. After these two episodes, we are giving up hope that she will be cleared of any of her food allergens in the July testing. We may even put it off another six months. We have had to give her benadryl only twice since she was diagnosed in December and now two more times in a span of three days. Now, it is NOTHING like another liver friend’s child, Aiden, who has idiopathic anaphylaxis, which means they don’t know what and why he has life threatening reactions to things.

We have been getting out more since Janna is off steroids and the cold/flu/RSV season is over, but that does seem to be when our household does catch a round of colds like Janna did. Malina caught it too, but she is about over it. I am amazed that Janna was about over it on Saturday, which was only three days for her! All is one week we went to see a girlfriend and her sons at her garage sale, and, of course, came away with some items we just couldn’t live without! We went to KC for the Fashion Show. The next day both girls went to a toddler service at our congregation. This was Janna’s first since her transplant. The next day we went to an egg hunt in Andale, where I grew up, since some of my nieces were in charge. Janna even got her picture in the local paper from the egg hunt. That night we went to see some good friends who just had a new addition to their house TODAY. Good thing we went to see them last week. Then we saw the family at Grandma’s on Easter. No wonder Janna came down with a cold the following Wednesday. I am glad that is all it was!

This week is “turn off TV week”. Our family, with a picture, was interviewed for the article in the local Wichita Eagle since we don’t have TV hooked up to the outside world and limit what the girls watch. It was a nice article. Most of my family thinks we are aliens living like this! The girls liked seeing their picture in the paper.

This whole month is National Donate Life Month. Please think about becoming an organ donor if you haven’t already. It is NOT enough to have it on your driver’s license. You need to tell your family of your wishes as well. Here are some facts: There are 90,000 people waiting on the donor list and over 2,000 are children. Every twelve minutes a new name is added to the list and approximately seventeen patients die EACH DAY due to organ donor shortage. Please think about it. Without the selfless act of Amber, who donated her son Jonathan’s liver, Janna would not have received her gift of life.

Janna is doing much better at night since we transitioned her out of her toddler bed and into a regular twin bed. We did that about a month ago and pushed one side of the bed against the wall. We didn’t put up any rails either. If she does get up in the night, she usually has to potty and then wants to go right back to HER bed. She doesn’t even want to sleep in our bed anymore! She is wearing big girl panties at night and has not had an accident (knocking on wood). She is doing so well. She has had more daytime accidents, but I think it is due to her playing and not wanting to stop. She is also doing well at swallowing her prograf (anti-rejection) meds whole. I don’t have to open them and mix them with water anymore! She even takes them out of my hand, puts them in her mouth, takes a drink of water and then opens her mouth after each one to show me that it is gone!

Scott is gone this whole week. So, we are going to have a slumber party at Grandma’s house on Wednesday. I am watching my sister’s kids since her sitter is closed Wed-Fri this week. I am trying to arrange some fun games since she has a 5 year old boy and a girl ten days older than Janna. They are looking forward to the slumber party at Grandma’s. It saves me from driving back and forth both days! Grandma is looking forward to it too! We are still waiting on our new cousin Tia…she just doesn’t want to come into this world yet!

Janna has labs in the morning (Tuesday) to check on her prograf level and to make sure her liver is happy with the lower dose of prograf. We will also check her blood pressure and the knot Dr. Chavez found last week. I hope it is gone! I will post more after the lab results. Sorry this is so long! Thanks for checking on us. It is so hard to get to the computer to post since they are still fighting the time change and now go to bed at 9:30 or later instead of 8:30!!

***lab update
Janna's labs were pretty good. Her white count stayed steady at 5.3. It is still a little low, but considering her cold and all, it is better than lower. Her liver enzymes look good. Her AST is a little higher at 34 (2 points) but that puts it out of normal, but just barely. Her ALT is 17 and GGT is 12, which is great.

Her blood pressure was fine this morning, so one week off her med and all is well there. Her pediatrician again checked the "lump" he felt last week. It was still there, but lower and not as hard. He had another doctor feel it. Then he scheduled Janna for a sonogram today. He thinks it is either her spleen getting larger or a stool and he doesn't think it can be a stool after a week. While we were waiting for the referral, Janna had a stool, so I asked that he check the area again. He said then that he definitely thinks it is the spleen. He is now questioning why he didn't feel it Jan-March. We talked about it and decided to cancel the sonogram until after the labs to see if the white count, platelets and liver function tests were out of whack. Since they were fine, we will just continue to monitor the spleen more closely. This is my two cents worth...since Janna's spleen was so large before her transplant, he is feeling her spleen. It has gone down a lot since transplant. It was all the way into her pelvis and now it is just out of her rib cage. So, we will continue to monitor this area (spleen) her blood pressure and we should be back to monthly labs again! Yipee!

Sunday, April 16, 2006 0:09 AM CDT

It was a long trip to Kansas City for the ALF Fashion Show. We had three potty stops on the way (only one false alarm). Malina kept telling us that this sure was a long trip. We kept telling her that this was a short trip. Well, it was compared to driving to Table Rock Lake.

Malina, Janna and I were in the Fashion Show. Malina was so excited that she got to be in the "show". They had matching dresses and hats, and Janna's doll had a matching dress too. The poor guy we were paired with didn't know what was in store for him. He was a 2002 recipient and in his 60's. Janna decided to walk down the runway about the time we got to the steps to walk up. She took Malina's hand and they walked together, until they reached about the halfway mark. Janna stopped, looked around at all the people and beelined it for whomever was behind her. Well, it happened to be Mr. Goforth, our show partner. Janna went right to him like she knew him and hung on tight until it was time to exit. Then she decided she wanted down again to take one last look at the people. I think we exceeded the time limit on stage. The problem was that Mr. Goforth just had hernia surgery and wasn't supposed to lift over ten pounds! Oops! I hope he is still doing well. We wish him well!

The girls ended the evening riding the escalator until Scott was tired out. We changed clothes, the girls put on their PJs and we headed home. Again, three stops and one false alarm on the potty report. We arrived home about 11:45pm. We hope that if at least one person becomes an organ donor, the trip was well worth all the time, effort and patience it took to get there. We will do it again if we are asked.

The good news is that while we were away, Omaha reduced her prograf level to 1mg twice a day. She is back on the same dose she started the day after her transplant. She will have labs again in a week to make sure this dose change keeps her liver HAPPY.

I have not had much luck on taking Janna's blood pressure. I can get the bottom number, but not the top. I will just have to keep trying.

Janna has had a rough week full of bumps and bruises. Sunday she fell from Malina's bike and bumped her head. Friday she fell in the parking lot and skinned her knee. Today, she fell off the swing (she was swinging on her belly) at a friend's house and bit her lip. It was huge! It looks horrible. I hope this is it for a long while.

In the rotten news department, a lady ran a red light and hit Scott's car. Luckily, no one was hurt and no one was with him. After waiting over an hour and half, three calls to 911, no cops were able to come to the accident scene.

Sunday we are going to Mom's for Easter. This will be the first holiday with the family since last Easter. We are looking forward to a fun day. We are hoping for a quiet week next week...except it is Scott's birthday and we have a new baby niece and friend's baby due any day!!

Thursday, April 6, 2006 4:27 PM CDT

****lab report below***
Well, everyone is on the mend at our house. Scott even missed worked Monday after taking a week's vacation because his cough would not let up. After his doctor called in a strong cough medicine, his cough let up. He is doing better. I don't think Janna has croup after all, but what do I know. I think she has the same type of dry cough as Scott. She has a runny nose off and on, but is doing much better. She has had no Benadryl in two days and is sleeping so much better. Malina relapsed and spent another day on the nebulizer. She is much better today. They are both not eating much, but I am sure their appetite will come back. I started getting that scratchy throat feeling Sunday night, but that was it. I cough here and there and have a runny nose on and off, but that is about it. I am we are coming to the end of this Wagner epidemic.

Malina turned FOUR on Tuesday. Luckily she had a good day and felt really good. Since the epidemic was still present, we had a low key day for her. Grandma came over for pizza and some ice cream cake. Poor Janna had her pizza, which she loves, and a popsicle. She really wanted some of the ice cream. I felt awful for her. Malina had her four year doctor's visit. She is in the upper 95or height and more so for weight, so the doctor wants us to make sure she gets more exercise. She is not a sweet eater and does not snack much so I think it is the exercise issue. I know she doesn't get enough since Janna has all the restrictions on the sun. We will have to do better, but we will have to wait until her lingering congestion and cough is better.

Janna will have labs next Tuesday to make sure her liver is still happy without the steroids. Also, we want to check it since she is swallowing her anti-rejection meds (all three of them!) whole. She is just so proud of herself. We did take down her toddler bed while we were home sick from vacation and put up a regular twin bed. She is doing much better sleeping there. I also am keeping the gate down during the night. She is not afraid of the dark at all. Janna would cry quite loud when she would wake up with the gate up. It just isn't worth waking up the whole house when she wakes up. I usually hear her closing her door when she wakes up during the night. She is such a neat freak. She is sleeping longer and even wants to go back to her bed when she does get up. Usually she just needs to go to the bathroom and she is out again. Although I do recall a TWO HOUR stretch one morning this week she was up, but her cough just wouldn't let her go back to sleep.

Next Thursday, Janna is a model again in the American Liver Foundation's Fashion Show at Mark Shale in Kansas City. We hope to see some of our liver friends there too! I found Janna and Malina matching dresses and even one for her doll. We will drive up and back in the same day since Scott has missed so much work and needs to be back for meetings on Friday. All of this is subject to everyone feeling up to traveling again. This will be the first year that Malina will go with us.

Thanks for checking in on us!

***Tuesday lab report
Well, again, it took almost two days to get the results. I don't know what is going on. I guess I am impatient! Janna labs looked pretty good. Her white count is up to 5.3 (normal for her is above 6). Her liver enzymes were great. Her liver is still HAPPY without the steroids!! Her bilirubin is the lowest it has ever been at 0.3. For the numbers people, her AST/ALT/GGT are 32/16/13, all within the normal range. On the down side, her protein is just barely in the low range and her magnesium is back in the low range...just when I thought she had that problem licked! Her prograf level was 9.8, so I don't think they are going to change a thing. Labs were back so late today, Omaha won't see them until tomorrow. I would guess that she is back to monthly labs.

I now have a stethoscope and blood pressure cuff for her, after days of wrangling with insurance, getting the right sized cuff and then all the parts that go with it! Now I have to learn to use it. It is not too reassuring when three nurses could not get Janna's blood pressure on Tuesday. But, I have an advantage, I have nothing better to do than to keep trying as I want her off the blood pressure medicine.

We are off to Kansas City tomorrow to the Fashion Show. Malina would sure like to walk on the runway with us. I told her we would have to wait and see! I can't wait to see some of our liver friends!

Friday, March 31, 2006 10:41 AM CST

Well, we came home two days early from our vacation...both girls got a cold and were miserable and still are. We left on Saturday and returned Wednesday. They had a GREAT time while they were healthy. They were so good. Janna made the car trip and whole vacation without any potty accidents. She even slept through the night two nights and made it through the night every night dry! She was amazing. We did have to make a pit stop in the parking lot of a chapel for a potty break on the way there. Thanks to Judy and David for telling us about the inflatable potty. It worked great. Of course, if Janna had to go, so did Malina. We used it once on the trip there, once in the parking lot of Silver Dollar City and once on the trip home. I will post a picture when we have them. It was a 5 1/2 hour drive. They were great in the car. They didn't sleep a wink on the way there. They were so excited. Our room was great too. There was a fireplace, juccuzi tub, full kitchen and lots of room. They had an awesome playground too. The girls played on it all they could. They had an indoor pool that we used once. It was so hard to get the girls out of there! The girls slept together on the queen sofa bed until they got sick.

We went to Silver Dollar City on Sunday. The girls rode the train and merry-go-round twice. Malina went on some other rides and played in the sand and rope mazes. I kept Janna in the stroller and we kept moving. I was so worried about germs. We cleaned and cleaned their hands, but it wasn't good enough. We ate all the meals in the room because of Janna's allergies. I took all of her food because I didn't want to take a chance of an allergic reaction away from home. Monday we stayed at the Resort and hiked on the trails and saw turtles. Monday night is when Malina started sneezing and sounding congested. She is usually the first to get sick. She woke up in the night and was miserable. Scott ended up sleeping with her in our king bed and I slept with Janna on the sleeper sofa. By Tuesday night, Janna was congested and even spit up after her prograf. We decided to head home since we didn't have Malina's nebulizer and the last three times she has had a cold, it has turned into asthma like conditions. We didn't want to chance it and have to visit the local ER. We headed home Wednesday morning. Malina was great the whole way home. She entertained herself. Janna was miserable and wanted me to hold her hand most of the way home.

By the time we got home, Janna had a fever. It was around 100. Tylenol brought it down. She had a fever throughout the night, but Tylenol kept it down. She ended sleeping with me in our bed. Scott slept on the couch. Malina ended up needed a breathing treatment in the night. It was good to be home again, especially since our girls were sick.

At this point, Malina has a cough. Janna is now coughing, but it sounds like it is cough from drainage. Their noses are dried up. Hopefully they are on the down side of their colds. I hated that they got sick. They were really enjoying their vacation. At least we got out of town and know that the girls travel well. The best part of the vacation was when we pulled into the garage and Malina out of the blue says "thanks for taking us on vacation, Dad". Our hearts melted.

The repair man was here maybe two minutes fixing the washing machine. All is well again in laundry land. Scott feels like he is getting the crud now. I hope not. He is on his way to pick up Malina's new bicycle. She will be FOUR on Tuesday. I am glad we didn't plan her party for this weekend. Hopefully she will feel better by next weekend and we will have her party then.

Janna is now taking her prograf by mouth. She had a vomiting episode the night we got home and taking the whole pill was the only way I could get her to take it without spitting it out. So, I will have to contact Omaha and ask about having a lab draw before the month mark to check her level to make sure it is not too high. I want to wait until she is over her cold though.

Malina will have her FOUR year checkup next week. She loves Dr. Steve and is looking forward to seeing him. It is so great when the kids love to see their doctor. Our counter is full of meds right now, but hopefully it will be empty again soon! Thanks for checking on us!

***Friday PM update
Well, I should have waited to post that the girls are on the mend. This has been their worse day. Malina is not getting much relief from the xopenex, so we added the pulmicort to her nebulizer treatments twice a day. I hope she has a restful night. Janna coughed so much during lunch, I had to give her some Benadryl. Then her fever, which had been gone for 24 hours, returned after lunch. She started tugging at her ears and that was all I needed to call the pediatrician before the weekend. They got Janna in right away. They checked ears/nose/throat and checked her lungs. All were clear. They think she has a case of croup. We couldn't get in to see her regular ped, so the dr. wanted to confer with her dr. before prescribing 30mg of steroids for 3-5 days. I about fell off my chair. I am go glad her dr. decided against the steroids...unless she needs them. I was warned that it may get worse before it gets better. She loves their bathroom. She went three times while we were there! She seems better tonight, but woke up after being asleep for only 30 minutes...I think it is going to be a long night. Scott is probably the worst one right now. His cough is almost nonstop and there is not much more he can take to try and control it. He is going to sleep on the couch, since I think I will have a bed partner tonight.

We will repeat Janna's labs in two weeks to see how her liver is doing and check on her prograf level to make sure it isn't too high. I hope tomorrow is a better day!!

***Saturday update
Well, let's see, we have had runny noses, congestion, coughing, coughing and coughing, and did I mention coughing, diarrhea, vomiting, but oh yes, projectile vomiting (Janna) and did I mention coughing. All three of them are coughing...Scott, Malina and Janna. Scott was in bad shape last night. He slept on the couch to try to control some of the coughing. Malina has been using the nebulizer almost every two hours all day today. Janna had diarrhea this morning and then after being asleep for almost half an hour at naptime started vomiting. They are pretty miserable. I don't feel 100but I hope I don't get what they have. Tomorrow HAS to be a better day for all of them.

Also, please say a prayer for a dear friend who lost her battle with leukemia from complications from her recent bone marrow transplant.

Tuesday, March 21, 2006 3:26 PM CST

***lab update below***
What a weekend!! Janna has had diarrhea for two days--ten stools on Monday. The poor girl, but it didn't slow her down any. I think it was some sort of bug, because I was down and out on Sunday. She is much better today. For those on poop patrol...her stools are firm today!! I hope no one else in the family gets the bug, because we are supposed to leave for vacation on Saturday. First, Janna will have labs drawn on Friday to make sure that the liver is happy without the steroids. She will also have her white blood cells checked more indepth through a lab report to see if it sheds some light on her declining white cell count. She will also have her vitamin E level checked as well.

The girls and I went to the eastside Zoo, commonly known as Petsmart, on Friday. It was not a scheduled stop, but the girls love to see the animals. I kept Janna in her stroller the whole time. I just don't want to take the chance with the germs. We already own stock in Purell.

It has been so cold her the past few days. We even had a dusting of snow last night. It was gone by 10am, but we really want Spring back. We got used to opening windows and going places without coats. Now we are back to coats and hats again.

Malina's highlight of the weekend was riding a mechanical bull at a Bar Mitzvah celebration. She ended up riding it at least ten times. She had a blast. I just wish I didn't have her wear a dress! Instead of dancing, she wanted to ride the bull. Scott stayed home with Janna. Pretty soon we will be able to go places together again.

Hopefully we will have a quiet week and will have good news on Friday! I will post before we leave....

***lab update
Well, Janna's labs looked pretty good. Her white count was up from 3 to 4.8. So we are just going to wait and see if it continues to rise. Her AST was back up to 43 from 36, but the sample was slightly clotted, which can affect the lab result for AST. Her ALT (22) and GGT (12) were down. The only problem I could see was that her prograf level was 12.6. They want to keep it around 5, so her level may be decreased, which is a good thing. We will have to wait to hear from Omaha until Monday. The results, even though ordered STAT, didn't get there until 4pm. So far Janna's liver is responding well without the steroids, but she will still have to be monitored. We will find out when the next lab draw will be next week. They will have to find us in the OZARKS. We will leave as soon as we eat breakfast and pack the car in the morning! The girls are so excited. Of course, something always has to happen before you go out of town, and this was no exception. While doing the laundry on Thursday, the washer decided it was tired and did not want to agitate or spin. So, we spent today at Grandma's doing laundry. It was not in my plans, but the girls had a good time as always. So, we will deal with the repair when we return. I will be having internet withdrawal, but I think I will survive. We will report when we return! Thanks for checking on us!

Friday, March 10, 2006 4:15 PM CST

***Lab update below***
This has been the longest two weeks. Janna did pass the seven month mark this week!! She will repeat labs on Monday and we hope that her livers numbers are back to "her" normal. I don't want to think about what will happen if they don't. I have to tell you that it was hard not taking her this last week just to make sure, but I didn't. We also hope to be able to stop the steroids as well. She has been well, so I can't see that her numbers bumped because of anything viral. Scott has a nasty phlemy cough, but other than that, all is well. Well, Malina still needs her pulmicort once a day through the nebulizer until the end of March, cream on her athlete's foot and ringworm...and we all still have to take the last pill for the pinworms. My next project is to get Malina to quit sucking her thumb so that she doesn't keep getting all these childhood problems. We have enrolled her in preschool three mornings a week beginning this fall. She is more than ready.

The MOST EXCITING news is that we received a letter from the donor mother. Yes, the mother of the child who so courageously donated the liver of her son. Amber is a young, single mother. Jonathan was a very sick child with down's syndrome who died when he was only nine months old. He had respiratory issues and was on a ventilator and had to made the decision when they told her he was brain dead. She is a organ donor herself and did not even question the decision to donate his organs. She wants to keep in touch and know all about Janna. It was a short letter and I could tell a very hard one for her to write. It sounds like she has a lot of family support, which is good for someone so young to have to go through what she had to. I am so glad we heard from her. We will have to wait for the one year mark before we have open contact with her directly, but she is alrady open to that idea.

Janna did have a mild reaction to food again last week. She has eaten this dish often, so I think it could possibly be the onions or tomatoes. Benadryl did stop the reaction pretty quickly. Scott was relieved that the reaction stopped, but also that I won't be making this dish anymore since he and Malina didn't like it anyway. Of course, he waited to tell me that until after Janna's reaction. I didn't tell Scott that I intercepted a peanut M&M that was headed for her mouth at Grandma's house this past week. Janna has been really good about not asking for the "bad" food after I tell her it will hurt her belly, but when cousin Ethan gives you food, you just eat it!!

The girls and I did venture out this week, which is something that we haven't done since winter and her RSV shots started (other than to Grandma's house). We made it to FOUR stores this week. Now I hae to wait and make sure that no one gets sick from it. It did feel good to get out. I almost felt normal. Speaking of RSV shots, Janna gets another one next Friday...and hopefully it will be the last one.

Janna is doing great with the potty. She was dry every morning except one this past week. She is still getting up once during the night. I keep hoping she will start sleeping better again... I think we are through with the binky too! Hip Hip Hooray! It has been almost a week without it. She only asks for it when it is naptime, but so far, so good. No, I haven't thrown them out yet!

My goal this month is to fight our $30,000 increase in tax appraisal on our house for 2006. It went up 13when most of the neighbors only went up 6 If I have to, I will take both the girls along to speed up our hearing!! I am sure they will give me what I want in a hurry then! We did make it out for my birthday last week, but they lost our reservation, so we were stressed throughout dinner trying to make sure we were home in time for Janna's meds, BUT at least we got out in the evening again....twice in less than a month! What a record!

I just can't resist putting this in Janna's Journal. My sister, her son who is almost 12 and I played PIG at my Mom's this past week. It was a beautiful day and the kids were busy playing. He had just finished his basketball season and so wanted someone to play PIG. Where are my six brothers when you need them. Well, I always liked sports, so I opted to play. Well, three games later, I won all three games. Adam could only say how embarrassed he was that his 40 year old aunt beat him...then my sister had to remind him that I am 45, not 40! That made him feel even worse. I know there will be a rematch in the future! So, Adam, if you read this, it is in print now! Gotcha!!

We are looking forward to our vacation the end of the month, but our fingers are crossed that Janna's labs return to normal first. As I always say, we live one day at a time. I won't believe it until we are on the road to the Ozarks. Thanks for checking on us....more on Monday!

***Tuesday lab update
Unless you order the labs stat, you get the results a day and a half later. I hate asking for them stat, but it is sometimes worth it for the sanity! Well, we are breathing again! Janna's liver enzymes all came down. Her AST is the only one still out of range, but just barely. It is down to 36 from 43. Her ALT came down to 22 from 33 and GGT down to 21 from 58. BUT, her white count dropped to 3.0 and her platelets are low at 149, just barely out of normal (150). Now, her pediatrician tells me that he can no longer feel her spleen, but then where are the WBCs and platelets going?? To weird that her WBC has been dropping for months.

Now I wait to hear from Omaha...

Wednesday update****
Well, I waited until 4pm today and decided that Janna fell through the cracks at Omaha. She stops her steroids with the last dose yesterday!! Now our fingers are crossed that her liver will stay happy without the steroids. I discussed her low white count and expressed my concern. At the next lab draw, they will run CBC with differential and that will tell them more about what may be going in. In the meantime, I will talk to the dietician and see if possibly it can be from a vitamin deficiency to start ruling things out. Vitamin levels will be run if needed. So, since we are going to be out of town at the end of the month, Janna's lab draw will be the day we leave. They wanted it 2-3 weeks out, but it would be too long if we waited until we got back. Plus, we will all a better trip if we know how her liver is responding. Since it is on a Friday, we will order them stat and get the results on the road. I will take her steroids along, just in case she has to start taking them again....hopefully not. We're back at the peds office on Friday for the dreaded synagis (RSV) shot. I will talk more with the ped too. He is so good about talking things out.

Monday, February 27, 2006 9:18 PM CST

Tuesday lab update below****Wed & Fri too

Janna had her first “monthly” labs today. It seems like it was forever ago when she had her last labs. She told me she didn't want to go to the doctor when it was time to leave. She changed her mind when I told her we were going to Grandma's afterwards. We hope to hear from Omaha that her steroids stop this week too. We hope and pray that Janna’s liver will not need the steroids and her liver is HAPPY and will remain so. We won’t get the results until Tuesday afternoon on the labs.

Janna is doing great with the potty. She doesn’t have to be reminded at all. She is so independent, if you can’t find her, she is probably crawling onto the potty. She has even remained dry at night several times this past week. She is really making good progress. She refuses to wear a diaper at night, so she wears a pull up. That does make it easier when she has to potty before she hops into bed and in the middle of the night. She has been to the doctor and Grandma’s more than once and has had no accidents.

I hate to say that her progress in the toddler bed is not so good. She wants me in the room until she falls asleep. She has progressed from me lying on the floor next to her bed holding her hand, to sitting by her bed, then sitting in the rocker across the room this past week. Sunday I tried to let her cry it out again, but if it goes on too long, she starts to gag and even threw up the last time I tried this. After she calmed down and just when I think she is asleep, I hear her playing. Of course, she had to go potty too, so once she saw me, it was tears all over again and the gagging. So, she let me stand outside her door by the gate until she fell asleep…over an hour from when we started. So, I guess this is progress, just not as fast as I want it. She is still getting up in the night wanting milk. I just don’t know if she actually needs it since her rice milk doesn’t have much fat it in and neither does her diet with all the food restrictions due to her allergies. I will attempt to let her cry it out at night too. Most nights it is only one time and she is back to sleep easily. Saturday night it was FOUR times, and that is a little much for me. Her baby bed is gone (we donated it to baby brother and his wife for their little girl that is due in April) or I would get it out and revert back to it. I wouldn’t do it, but I dream of better sleep and it does sound like a better option for more sleep these days.

Other than that, Janna is doing well. She is such a comedian. She is always making us laugh and is such a lovable, cuddly little girl. She and Malina tried on the dress today for the ALF Fashion Show in April. Whew, I had a hard time trying to get them to take it off. They just wanted to twirl and twirl. It even came with a matching dress for the doll, so I guess the doll will be in the Fashion Show too.

Malina is not sleeping well these past few weeks either. She has always been our good sleeper. Some nights she is up 2-3 times too. I had her blood sugar checked two weeks ago and it was normal. I asked about anemia, but she doesn’t drink too much milk. I am thinking about checking for pinworms! I know it sounds horrible, but it can interfere with sleep. I took advantage of a day when my Mom was off work and scheduled a doctor’s visit for Malina and left Janna with Grandma. She also had to have blood drawn to see if she also has an egg allergy since she has a terrible skin reaction to raw eggs. Plus, she was lacking one prevnar shot too…and then I decided it would be a good idea for her to get the hepatitis A series too. So, after FOUR bandaids, we made it out the door. I didn’t even think about her gymnastics class that night. Her shots were about 5pm, so she opted not to go to her class at 7pm that night. The poor girl, she did not like the shots or the blood draw. It took two sticks to get the blood draw. The fishing expedition on her first arm left a horrible bruise, so I know it had to hurt. She is so ready for school, but we are waiting until Janna gets farther out from her transplant to avoid all the germs and bugs that going to school the first time holds. She is going to a short Sunday school class one Friday night and Saturday morning a month. She loves it and it is good to get out with her! We found out today that she has a very high allergy to egg. It is higher than Janna’s. She is in class 5 (highest is class 6) with an IgE of 84.10. So, she will have to avoid eggs too. All her other tests were negative.

In really good news, Scott found his wedding band Sunday. He finally called and found that he could rent a metal detector. That was much cheaper then replacing his ring. It took only ten minutes to find it. We were all thrilled that he found it. Now he will take it off when it is time to play with the girls.

In depressing news, I turn 45 at the end of the week. I just can’t believe I am that old. Oh well, no one has found the fountain of youth! If the girls would sleep better at night, I think I would feel younger!! We are planning on going to eat, just Scott and I. That will be the extent of it. We are waiting to hear from the babysitter to make our plans.

In getting our taxes ready for the accountant, I have been keeping track of mileage having to do with medical visits. Well, with over 60 doctor’s visits in Wichita alone, plus the trips to Children’s Mercy in Kansas City and Omaha for the transplant evaluation and transplant, we amassed 4,400 miles during 2005. That is daunting. Thank goodness we haven’t been out of Wichita this year and hopefully won’t until the Transplant Reunion in July.

Thanks for checking in on us. I will post the lab results when I know them.

***Tuesday lab update****
I can tell you that I already don't like monthly labs. First, our regular nurse was not there today, so the lab results were final before noon and I had to call at 4:30pm to have them sent to Omaha and a copy to me. That should have been a bad sign.

Her liver enzymes are wacky, to say the least. Her AST is down one whole point
at 42, which is high for her. It has been high for over a month now. Her AST is 33, which is about double what it has been. It went up from 25 from last months. Then, the biggest increase was her GGT which is 58!! This is a lot higher than it has been running. It has been in the low teens since mid-November. I don't know what is going on, but I don't like it. Other than that, her labs look good. NOw don't take me wrong, her liver enzymes are all still in the normal range, except the AST. Her prograf level is also low at 4.5. Since the labs came so late, I didn't get a call from Omaha today. I am sure now they won't stop steroids and I don't want to until her numbers are back to "her" normal range. We may have to increase her prograf. It has been at the same level for over two months. It could be since she gained a pound in a month, she needs more prograf. I knew I jinxed myself when I reminded Omaha in an e-mail Monday about stopping the steroid. She has been healthy this month, so I hope it is not liver related and her numbers start trending back down soon. I imagine she will have lab draws more frequently until the numbers are down and that is fine with me!

Well, Malina now has athlete's foot, one patch of ringworm on her stomach and pinworms. All of us have to be treated for the pinworms. It is one chewable pill today and one in two weeks. The pill is safe for Janna, so she joined us in the chewing. I hope she starts sleeping better at night. She did sleep through the night last night until I went to her room at 5:45am to do "the check" for pinworms. I will spare you the details. Once she woke up, she did not go back to sleep again. So, we had an early morning.

I will report more when I know it. Please pray that it is nothing liver related and her numbers start trending downward soon.

****Wednesday update****
Well, Omaha isn't worried enough about it to change a thing right now. We will repeat labs in two weeks. They want her prograf level to be 5, so they weren't concerned about her current level either. She will continue to take her steroids every other day until her labs stabilize. At least they didn't tell me "to let them worry about it". I would have lost it. I WILL worry about it. That is one thing I do well. We will keep our fingers, toes and everything else crossed waiting for the results again in two weeks.

***Friday update***
Well, the girls gave me the best present ever last night. They both slept through the night. Janna was up at 5am, but went right back to sleep and then slept until 8. Malina slept until 7. I am alive today!! It is amazing what a good night's sleep can do for your mind and body!

Wednesday, February 15, 2006 3:16 PM CST

I hope everyone had a HAPPY VALENTINE'S DAY!! Janna got the most expensive gift, although she had some pain with it....her $3,750 synagis (RSV) shot. I can't believe Scott couldn't top that one!! Maybe next year! She had her monthly checkup with Dr. Chavez. He thought she looked really good and was happy to see a ONE POUND weight gain since last month. She really had a tough time with all the diarrhea and then food restrictions due to food allergies, so it was good to see the weight gain. She is now up to 30 lbs. 8 oz. (Malina weighed in at 32 lbs 10oz at two years). There is a lot of RSV going around so he warned us of that. He also checked Malina's ears because she complained of them hurting Sunday night. They were clear, but he did find that she has something viral going on since her throat was all red. So, as best we can, we have to make sure they don't share things.

Janna has been in her toddler bed four weeks. She is doing pretty well. Her naps are not as long as I would like, but she loves being a "big girl". She is still getting up in the night and has been since her diarrhea frenzy in November, so I hope she gets back to sleeping through the night again soon. Janna is off the bottle too. It was so easy. I guess it was MY crutch and not hers. I stopped it completely and it has been over two weeks and no complaints and she is doing fine getting her milk from a cup. The best and biggest news is that Janna is using the POTTY. I started last week and I can count on one hand how many accidents she has had. Since Saturday, she has been going #2 in the potty too. She is even dry during her naps. The only time I can even get a diaper on her is at night and she even fights that. So, she still has to master staying dry during the night. It has been so easy, I keep waiting for a disaster...but none yet! She wears big girl panties from the time she gets up until she goes to bed. Of course, I have a box full of pullups left from Malina, but we will gladly pass them on to her cousin, Isabel. I still have what I consider the worst habit to break...the BINKY!!! She is down to only one at nights and naps and she uses it at no other time, but it will be a major fight. I am going to wait on that one. She has her next lab draw on Feb. 27th, our first MONTHLY lab draw. It has seemed like forever already, but it is a good thing and something we will have to get used to. At that time, her steroid will be stopped as well. She is growing up so fast!! We even went to the doctor office and got our pictures taken for V-day for Dad and she remained dry both times and we were gone two hours each time! I am so proud of her! Yes, I will post the new pictures.

Malina is getting taller by the day. She is so ready to go to school. I am thinking about putting her in a half day program this summer. She is going to gymnastics once a week now and loves it. She still likes to dress up in a dress most days. Now she is into high heels. I can hear her coming from my closet. Then, of course, Janna has to join in!

Scott really loves his new job. He is working some overtime right now, but not much. We are lucky that he is home with us every night. He lost his wedding band this week while he was swinging the girls in the backyard. We will have to find someone with a metal detector to find it...and we need to do it soon since there is a forecast of snow for this weekend.

We have been blessed with good health lately and we are so thankful for that. I almost forgot! Scott and I made it out at NIGHT for the first time since Janna was born. My mom watched the girls and even gave Janna her prograf Saturday night. We went to our congregation's 120th celebration. We had a good time, but my cell phone was in my hand the whole time. We were home by 10:30...and all was well. Janna had JUST went to sleep and Malina was still awake! They did sleep a little later the next day. So, now we know it can be done. I know it will be easier each time, but no one has ever given Janna her medicine but Scott and I. I figured if my Mom raised eight of us, she could give one dose of medicine, even though she had to mix it in a cup first, and she did! Thank you Mom for the night out!

Tuesday, January 31, 2006 3:42 PM CST

Wednesday, February 8th****

HAPPY SIX MONTH TRANSPLANT ANNIVERSARY JANNA!!!!!

***weekend update below***
Janna had her lab draw and pneumonia shot yesterday. We were so used to getting it back STAT that we had to wait until late this morning for the results. The results are okay, but not great. Her white count is the lowest it has been since we have been home. Her potassium is down too, but just barely in the normal range. Her BUN is still down, but it did come up a little from two weeks ago. Her AST came down, but it is still out of the normal range, but her ALT and GGT went up two points, but are still in the normal range. These are some of the liver tests. Her protein level has slipped into the low range, but again, just barely.

I have to admit that it is hard to keep her on a balanced diet with all the food allergies. I hope I can get a handle on it before it affects her growth and development. She is also drinking a lot less milk. She is down to one bottle at night and milk with her cereal or oatmeal in the morning. She really likes meat and I am surprised that her protein is low. I will have to watch it more closely. She will have to start eating more bananas too. I may have to entice her by making some banana muffins. She sure likes the pumpkin muffins. She has been sleeping in her "big girl bed", as she calls it, for the past week. The look on her face the first few days when she opened her door and walked out of her room were precious. She was so in awe that she could get out of bed by herself, open the door and there I was waiting for her. I always listen for the click of her door. We put a gate up at her door so she doesn't wander if she gets up in the night. She is doing better than I expected. She is still getting up at night. She got so used to it when she had diarrhea we are having a hard time getting back to sleeping through the night. Of course, I was giving her all the milk she wanted when she had diarrhea to keep her hydrated. So, we are really fighting two battles.

Malina is going to gymnastics class once a week and absolutely loves it. She really likes wearing the leotards her cousins gave her, and Janna does too. There is nothing cuter than young girls in leotards! Malina, for some reason, has been getting up through the night and wanting to sleep in our bed. She has never done this before. We think she is starting to have more nightmares because she talks about monsters. Dad has even had to go into her room in the middle of the night and do the "monsters so away dance". I sure hope she gets back to sleeping through the night too. She has been such a good sleeper. She keeps reminding me that she will be FOUR soon and I can't believe it. The weather has been so unseasonably warm that the girls have been able to play on their new playset. They are both such daredevils. They slide down the slide so fast and then climb back up the ramp to slide down again. Janna has no trouble keeping up with Malina and can even climb the stairs to the fort by herself.

Scott really likes his new position at Boeing. He talks about it all the time at dinner. It is a perfect fit for him. The girls just want to know if he typed "airplane words" all day.

I am looking forward to our first family vacation with Janna!! My brother had a week of his timeshare that his family could not use by March 31st. This really got us moving because we didn't think we would attempt a vacation until Janna was past her one year mark in August. We are set to go to the Ozarks (not too far from home and Omaha) for a week March 24th and stay at our favorite place, Big Cedar. We won't be in the cabins, but what the heck! Time away from home is time away! We took the last week we could get so that it might be warmer. We plan on taking the kids to Silver Dollar City, Eureka Springs and Dogwood Canyon. Scott and I used to go there before we had kids (he proposed to me there too) and we went once with Malina when she was six months old. We haven't been back since. We just have to make sure that everyone is healthy and we have Janna's foods and meds. We also had to make sure that they had a full kitchen, since I will still have to cook all of Janna's food. It seems that every time we have tried foods from outside the home, the diarrhea comes back.

Janna's SIX month transplant anniversary is next Wednesday, Feb 8th. I can't believe it has been six months already. We will stay on every other week labs unless we hear from Omaha. Thanks for checking in on us!

***weekend update***
Omaha notified us that Janna will go to MONTHLY labs now! What a shock. I wasn't prepared for this news. The bad news is that the steroids will not stop until after this next lab draw the end of February...so three more weeks of steroids. Oh well, that day will come! Her diarrhea has been gone for a while (knocking on wood), so hopefully we have a handle on all of her food allergies. I am going to have her vitamin levels checked to be sure she is getting the right nutrients out of the food she eats.

February 8th***
Janna is doing pretty well going to the potty. She has had a few accidents each day, but is getting the hang of wearing "big girl panties" like her big sis, Malina!

Scott is so ready for the Superbowl. Pittsburgh is his hometown and he is a Steelers fan! We will go to Grandma's house and watch it with her. Go Steelers. Thanks to Howie & Joann for the "Terrible Towel". Scott knew what it was before he opened it! I have never heard of it, but what do I know not growing up in Steelerland!

Monday, January 16, 2006 9:59 PM CST

Forgive me, but I guess I got so excited that Janna was back to every other week labs, that I forgot to post. The really big news is that Janna is TWO and now five months post transplant. She slept through the night and woke up Sunday ready to celebrate! She could even tell you “I am two years old today”. I made two cakes, one for us and one for her. Her carrot cake (wheat free, soy free, dairy free, egg free, nut free) turned out pretty good. She really liked it. At one point, she was lying on the table with her spoon in her hand eating the cake from the pan (remember we are at Grandma’s house and she has no rules, like most Grandmas) In fact, she wanted another piece after dinner too. I decorated it with a ladybug on top and she really loved that. I will post pictures when I can. Either that or she was so excited that she was eating cake again. It has been a while! We celebrated at Grandma’s house since the Steelers (Scott’s team) were playing. She had a fun day, opened her presents and played all day…and no nap. Of course, she slept on the way home…a whopping thirty minute nap! The bad news was that she had to stay up until 8:30pm for her prograf since she had labs Monday morning.

Janna had her two year visit with her pediatrician last Friday. Her weight has stayed steady at 29lbs 8oz. That is amazing considering she had diarrhea for almost six weeks and now with her restricted diet. She was 35 ¼ inches tall, so she is above the 80ark, except for her small head. The really good news is that Dr. Chavez could not feel her spleen at all! That is amazing considering at one time it was 13cm big and that was bigger than most adults. Also, her liver is back under her rib cage and not protruding into her abdomen. Her belly is as flat as I have seen it. She had one of Malina’s leotards on and her belly looked like any normal two year olds. Since she is so big, they had to split her RSV (synagis) shot and she had to get one in each leg! She told us that it hurt. She will get a Hepatitis A shot with this next lab draw and a pneumonia shot with her next. Then, she will have all her shots (except the synagis shot) until her second hep A shot in six months.

Malina is so excited that she starts a gymnastic class this week. She will have a 45 minute class once a week for nine weeks. If she does well, she may go twice a week or start some tap and ballet. She picked up a whole bag full of leotards and tutus from her cousins on Sunday. While we were celebrating Janna’s birthday, she was busy trying on four or five of the outfits and modeling them for us.

On the baking front, I figured out why the biscuits and corn muffins were so dense. I have been using too much rice flour. When a receipe calls for one cup of flour, you use only 7/8 of a cup of rice flour. This thought came to me in the middle of the night this last week. Thank goodness I had this breakthrough before I made her birthday cake! I also made her some pizza and she ate every piece…and yes, we snuck in some real pizza for the rest of us and she didn’t even notice or care. I wonder how long that will last!

Janna has had a few rashes too. We think that she cannot handle soybean oil like most kids can with soy allergies. She gets a rash almost immediately or has diarrhea the next day. We will have to continue to watch out for soybean oil. We have been pretty strict about it and then I let her have some salad dressing to dip her spinach leaves in. I figured that the nutrients she would get from eating the spinach would outweigh a very slight rash on the face. Now that it was a most horrible diarrhea, I am back to eliminating it totally again. She will have to learn to eat the spinach leaves without “dip”.

Well, it’s Monday and Janna’s diarrhea is back. She had three stools on Sunday and FIVE today. I keep a food journal so I am trying to figure out what caused it. Let me put it this way, her bedding was washed twice day, along with her pajamas and her blankets. She woke up twice last night and both times had a stool. You could even hear it on the monitor. She had to be changed during the night, but the one in the morning before we left for labs was by far the worst. Everything had to be washed. I felt so sorry for Janna as she stood there looking at me with that innocent face.

Her labs were just okay. Her white count and BUN are still low. Her alkaline/phos is almost back to normal at 455. Her AST (liver enzyme) jumped up to 53. It hasn’t been that high since right after transplant. Since she is now two, there is a different lab reference range and it shows that her AST is high, BUT the specimen was moderately hemolyzed (clotted) so it can affect the AST and other lab values. She did have her first hepatitis A shot too. We will wait to hear from Omaha…or not. Her prograf level is a little low at 6.4, but she just had two massive stools and one was right before the lab draw. We will just sit and wait. Well, I will just sit and wait, the girls will continue to run and jump and climb and scream and be girls. Luckily the diarrhea has not affected Janna’s activity. Thanks for checking in on us.

****Tuesday***
Another day with diarrhea. Four stools and counting...and the day isn't over! It doesn't seem to bother her, which is a good thing. She just can't get through the night either!

****Wednesday***
The official tally for Tuesday was EIGHT stools. Today, she has had only three! Yipee! I did read that it can take days for the allergen to get out of her body. We will repeat labs in two weeks! I hope all of us stay well. There is strep again and sore throats in the family again along with the RSV and flu season in Wichita. I think we will stay home where it is safe and sort of germ free.

**MOnday update***
Well, I guess maybe the diarrhea will be around as long as she has allergies. There seems to be every other day or so that she has one so bad that it is all over the place and I can't trace it to a known allergen. I keep thinking that it can't be good for her system and she can't be gaining weight like she should with all the diarrhea. I am going to call the allergist and ask if this is what to expect or if I should be trying to narrow down some other allergens.

The big news is that Janna took a nap today in her toddler bed. I wish I had a picture of her face when she walked out of her room when she woke up. She opened the door and walked into the hallway all smiles! Malina and I heard her open the door and ran to greet her. It was so cute!

No labs until next Monday and hopefully we will have a quiet week with no extra laundry!!

Tuesday, January 3, 2006 1:58 PM CST

I was finally able to get on-line and research the food allergy issues and get some recipes....thanks to Lisa and Stacy for the website info. Then, I made it to the health food store. I was there way too long looking at food labels, going up and down the aisles. I did find some food choices for Janna so that she won't have to eat the same foods over and over again. I didn't know that they make all sorts of pasta out of rice and quinoa. She can now have spaghetti with rice noodles and we can have the regular noodles. Scott suggested that we just eat what she eats, but that would be far too expensive. I will just keep her food labeled and separate. Her rice milk alone is close to $7.50 a gallon. Three cups of rice flour to use in baking was $6.00...you don't want to know the rest of the story. I did make some oatmeal raisin cookies and applesauce bread for her. I tasted it and it was pretty good. She even liked it. I am still on the hunt for dairy and soy free margarine. I found the brand, but it is available in the kosher section of bigger supermarkets and there is not one in Wichita. It would be much easier to bake with. For now, I am looking for receipes that use shortening, as I found one that was dairy and soy free or that use oil. There is a lot of good information the allergy website. In fact, when I was looking for receipes, you can sort them so that you view only recipes with the food allergens you are avoiding. If you missed the previous post, Janna has to stay away from six main food groups. On the top of her list is eggs (class 4-very high), then nuts, wheat and dairy (class 3-high) and then soy and all legumes (peas, beans)(class 2-moderate). The bad thing is that she remembers how good some of the no-no food tastes and now she can't have it. Top that off with the terrible twos and she has had some awful tantrums.

Her labs today were pretty good. She is just getting over her cold, so her white count is still low. Her BUN is still low, but higher than last week. Her alkaline/phosphatase is down to 1820 after reaching a high of 7079. I hope it continues to decline. Her liver numbers are up and down, most of them down from last week when she had a cold and all within the normal range. I hope to get word that she can go back to every other week labs, although she has her synagis (RSV) shot and monthly checkup next week, which will include her two year checkup.

Malina is much better. We still have to give her the Pulmicort once a day through the nebulizer throughout the cold and flu season, but she is back to her go-go self. It is so routine now that she does it herself. She is so into dressing up everyday, it is fun to see what she wants to wear. She is so conscious about how if it all goes together. The shoes are a riot. Of course, I found a three pack of dress up shoes to give her some variety. Now if I can stand the clack, clack, clack of the sound on the hardwood floors. Janna is now trying to wear them too. She even came out of my closet last week with a pair of mine on and she was walking pretty well...of course, we have pictures of both girls. Scott is really good about taking pictures. I am not good about getting them in albums. I have put them in boxes in date order, so that is a start to my scrapbooking...someday!

The girls got a new playset and the weather has cooperated nicely during the holidays. Today it is 64 degrees (sorry again our Pittsburgh cousins and friends). We are going to try to get to the Zoo this week too since it will be in the 50's all week. This is incredible weather.

Well, two of my goals weren't met while SCott was on break. We wanted to get Janna transitioned to a toddler bed, but until she is back to sleeping through the night again on a regular basis, I don't want to attempt it. Oh well, it will happen soon enough. Then, I wanted to get Janna potty trained. She was so ready about the time all the diarrhea hit. Now she is still interested, but not as much. I can't believe with all this food elimination from her diet, that her stools are pretty much back to normal. I am keeping a food journal and each time she has a loose stool, I am searching for the food culprit. I know that some of the searching is in vain, but I want to make sure that we know all the food allergens and not put her through six weeks of diarrhea again.

The exciting news is that Janna will be TWO in two weeks on the 15th!! I can't believe our baby will be TWO! She is so much fun and has us laughing all the time. She can say her numbers from 1-4 and then kind of skips 5 and goes on 6-10. She especially knows 1-2-3, go to time out!! She loves to get to three before I do and tell Malina to go to time out. Whew, is it a different story when she has to go to time out...yes, she does get into trouble! She knows most of her ABCs and loves to sing it while she is washing her hands with Purell. She can say some nursery rhymes and even sings some and is finishes sentences in her storybooks. She knows some colors, but not many. She even reminds SCott to take his "night pill" when he comes home from work. The girls remember better than he does!

We are adjusting to Janna's food allergies. I have to say that it was pretty depressing to us for a couple of weeks. When you think about how dangerous it is, what she will be missing and how much this world and all social occasions revolve around FOOD! The best news is that we are HOME, we are HEALTHY and we are enjoying our girls. I hope everyone has a healthy and happy 2006!! We are planning on it!!

Monday, December 26, 2005 10:22 PM CST

****Thursday update below***

Well, we made it through the weekend without giving Janna any Benadryl, which means no allergic reactions. She is still having loose stools, but that may continue considering what she may be allergic to that we don't know about. She has her lab draw at 8:30am Tuesday morning and then we see Dr. Lower, the allergist, at 9:15am. I hope we have some good news to report.

To add to our weekend, Malina has a heck of a head cold and cough. She went with me to the Hanukkah dinner on Friday night and although I washed her hands with Purell at least six times, she still caught something. Now the cold has induced asthma....so we have had to give her breathing treatments all day today and see the doctor in the morning because the breathing treatments are not lasting the four hours like they should. Add to that that she did not take a nap today and was up most of the night last night feeling miserable and having trouble breathing because she was so congested. Scott will have to handle her appt since the girls' appts may overlap. I had hoped that he would be able to go with us to the allergist as I could sure use the help, but the doctor on call tonight wanted her to be seen in the morning. He was concerned that she developed the asthma so quick after getting a cold this time.

With strep throat, whooping cough and chicken pox going around, we ventured to Grandma's house for about an hour early Christmas morning. She was sad that we were not staying longer. At least all of my family lives within twenty miles of each other and it isn't so hard to see each other.

The girls are having a great time opening their presents and lighting the menorahs...we have four of them going each night. Scott has been off work since December 23rd and won't have to go back until January 3rd. Thank goodness he is home to help with Janna's allergies and Malina's asthma. It won't be much of a vacation for any of us, but at least we are together. The weather is beautiful here. It was in the low 60s today and will continue to be in the 50s all week...sorry Pittsburgh friends!! I will report more when I can.

***Thursday update***
Janna woke up Tuesday morning with a hand-me down cold from Malina. She was so congested and had a runny nose. She had her labs and then we went to see the allergist. Scott was at the doctor with Malina. They were checking out why the albuterol treatments were not helping her. She had to have a nebulizer treatment while she was there. Scott did join us at the allergist later.

The allergist was very good and Janna really liked her. She opened her mouth and let her look at her all over. She did not think the skin allergy tests would be accurate since sJanna is on steroids, so we are back to sending blood samples to the lab in California and waiting about a week each time....so we waiting. This time we are testing for eggs, wheat and green beans. She is testing for green beans in the hopes that Janna will be able to eat some green vegetables other than broccoli and spinach. We got a lot of good information, watched a scary video about analphylaxis and got a demo of how to use the Epipen. Interesting that our pediatrician only gave us one Epipen with NO refill and the allergist gave us FOUR Epipens at a time with unlimited refills. We will see her again in six months and retest all the food allergens, hoping that some may drop off the radar screen. She gave us a lot of information on nose allergies too, like keeping dust and other allergens in the home low risk since a lot of kids develop nose allergies next to all sorts of things in the house. I did make it to the store to try and see what I could find for Janna to eat. There are a lot of corn cereals that she is able to eat, so that may help with breakfast and snacks. I am still keeping her away from the obvious, all dairy, soy and nuts and also all beans, wheat and eggs. I know it will get easier, but when this whole world focuses so much on food, it doesn't make it any easier, especially when Janna knows how good some of the food is already.

Her lab results were okay. Her albumin and potassium were back in the normal range. Her white count and BUN is still low. Her alkaline/phosphatase is back under 4000, so we hope it gets back to normal soon. Her liver enzymes all went up, but not by much and all within the normal range. Her cold may be making them higher. Her prograf level was 6.7, which is a little lower than they wanted, but we have had no call from Omaha, so no changes. Janna's stools are about back to normal (knocking on wood). I hope she gets over the cold soon. She is coughing in the night and I am waiting to hear from Omaha as to what I can give her to get her some relief and sleep! We will have labs again on Tuesday and hopefully they will be even better yet.

Back to Malina, we know how to give her Pulmacort (steroid) twice a day along with her nebulizer treatments every four hours. She is much better today and hopefully won't need much more after this weekend. We will have to continue the Pulmacort through the nebulizer once a day until cold and flu season is over. She has such restrictive airways that when she gets a cold it affects her airway faster each time. They are hoping that the Pulmacort will stop this from happening. She has had to use the nebulizer after all her colds this year, which is not a good sign. She has had some pretty sleepless nights and days recently.

Scott has been home since December 23rd and he has been such a help with Malina this week. I just wish the kids would not have been so sick....oh well, maybe next year.

The girls are watching some men put up their new playset. They are so excited about it. It is such a nice day...in the 60's, which is so odd for Kansas this time of year.

I'm trying to figure of menus and try some new foods and receipes so Janna has some variety in her diet. I may have to seek the help of a dietician if eggs and wheat come back as allergens too. I really think that it what we will find out. I have a lot of reading to do about allergies, both on-line and with what the allergist gave to us.

Thanks for checking on us. We hope everyone has a safe and HAPPY NEW YEAR! We will be home, safe and sound, and hopefully more healthy than today!

3pm update***
Our ped's office called to tell us the RAST tests were back already. The bad news is that she IS allergic to eggs, wheat and green beans, which means all legumes. She is in the Class 4, very high, for eggs, with a score of 30. She is also high for wheat and moderately allergic to green beans. What this means is that she has to stay away from all legumes too.
For those number moms, here goes:

Eggs 30 very high class 4
nuts 7.29 high class 3
wheat 5.33 high class 3
whey/dairy 4.63 high class 3
soy 3.07 moderate class 2
legumes 1.69 moderate class 2

When Janna has her lab draw next week, I will ask to see a dietician or nutritionist. I know I will need some help with these five food allergies and who knows what we will run into next...hopefully nothing, but who knows. All I know is that with SIX weeks of diarrhea, we are now down to what was causing it. No wonder she had it so bad some days with this many foods involved. I hope and pray that she will outgrow ALL of them real soon. We will test again in six months. In the meantime, I will be searching the internet and the health food stores for feeding options. I don't want her health to suffer because of these allergies. The rest of us will have to suffer through it too. Someone said I guess your family will be losing weight...my answer was that I would be IF I was eating what Janna was eating. Instead, you can find me in the corner of the kitchen sneaking pita chips, brownies and other no no foods. In fact, the other day, Scott went to get pizza when Janna took an early nap, only to find her awake when he got home. So, he and Malina had a picnic on our bedroom floor and enjoyed Malina's favorite. So, there is a way, but not a good way! Off to my new research project....

Tuesday, December 20, 2005 10:05 PM CST

****Thursday update below****

I don't know why I haven't updated after this week's labs. Maybe it is because Janna had another allergic reaction on Sunday night. This time to peas, most likely. This time she did take the Benadryl and her itching and hives on her face started to diminish. Maybe it is because Janna had SIX stools on Monday and FIVE today after having two to three all last week. Maybe it is because Janna's skin is so sensitive to everything now. She breaks out when she brushes the carpet and during most meals or snacks. Maybe it is because I am already tired of reading labels and trying to figure out what she can eat to avoid eggs, milk, nuts, soy and wheat. It amounts to a lot of boring, bland food, but if it means she won't have a reaction, I'm all for it. Maybe is is because our local lab mislabeled her lab request that did NOT send the blood to California for her RAST tests until the nurse called TODAY to check on the results. Scott did call the lab and spoke with the supervisor. They ordered the labs stat and we hope to have the results on Friday, but NOT today like it should have been. I am not holding my breath for Friday either. Maybe it is because the earliest the allergy specialist can see Janna is JANUARY 26th...but we are working on that! Maybe it is because after almost FIVE weeks of diarrhea, it is started to show on Janna's labwork. Maybe it is because Malina is tuned in to Janna so much that she tells us when her face is red, when she is itchy and what she shouldn't be eating. Maybe it is because Janna is not sleeping well so I'm not either. She is up at least once and sometimes twice a night. Maybe it is because I don't see an end in sight...

Her white count is back down under normal. Now her potassium is low along with her BUN and albumin. Her alkaline phosphatase is at an all time high of 7079. The really good news is that her liver is stable and HAPPY. We always celebrate that fact. Her IgE (allergy antibody test) was 325 (normal is 0 to 60). There is definitely something going on. Her C1 Esterase (a component test) was 39 (normal is greater than 11.1). Her prograf level is 10.4, even with the lowered dose. So, there was no word from Omaha. Janna's weight on Thursday was down only 1/2 pound from last month, which is a miracle. I thought she had lost more weight.

We will wait for the allergy test results on Friday. We are hoping to get in to the allergist soon. We just have to have some answers on this. Janna is just now starting to get some diaper rash. I have been able to control it until now.

I know this entry is so negative, but I just want to get Janna's health back. Her skin is so blotchy, she is so irritable and clingy, she is not sleeping well and on and on.

We are so thankful that all of this has not affected her liver. Anytime I need to be grounded and stop feeling sorry for myself, I just log on to the site with other liver families and that gets my feet back on the ground in a hurry.

Our heart goes out to Janna's donor family. Without this gift, Janna's health would not be as good as it is despite all that she is going through right now. Please keep them in your prayers during this holiday season. It will be a tough one for them.

Janna's already up tonight for the first time (10:15pm) and she had only been asleep for an hour! Scott is keeping her company in our bed until I finish this!

****Thursday update****
The good news is that the allergist can see us on TUESDAY. The bad news is some of her RAST tests. The results were back today. She is not allergic to latex. She is in the high range for cow's milk and nuts (Class 3) and moderate for soy (Class 2). I am a bit unhappy that they did not test for eggs as that was one of the triggers and also wheat, but we will see the allergist on Tuesday.

I am afraid I lost the bid for "Mom of the Year" last night. We have one monitor for Malina on our dresser and one for Janna on our headboard. I always, ALWAYS check to make sure that each one is on the right A/B setting, EXCEPT last night. I crawled into bed and Scott saw me moving around when he was ready for work. He mentioned that it was a miracle that Janna was not in our bed. He walked to the kitchen and came back to tell me that Janna was crying. I thought he was kidding me. Well, sure enough, both monitors were set on Malina's room. I guess that is one way to get her to sleep through the night again. I don't know how many times she got up during the night and thankfully she did not have a stool when I went to her room at 5:45am. I felt very bad all day about it. Bad mama!

Monday, December 12, 2005 2:21 PM CST

***Tuesday, Wednesday & Friday update below****

Yes, Janna still has diarrhea, but only 3-4 stools a day. BUT.....poor Janna had not one, but TWO trips to the ER on Sunday. She had an allergic reaction to something, most likely eggs and her lips were so swollen instantly. If that wasn't scary enough, she would not take the Benadryl to stop the reaction. She kept spitting it out. The first trip to ER, they gave her some liquid Benadryl and just kept her for observation a couple of hours. Then we came home. She had some soy milk and was asleep for her nap. Not five minutes later, she was crying. She had another stool. When I changed her, I noticed that her bottom was all red and she had welts all over her bottom. After getting her dressed, I noticed that she had them behind her knees, on the inside of her elbows and then everywhere. She was so uncomfortable and was trying to itch them. I took her back to ER. They gave her a shot of epinephrine and a dexamethosone (steroid) and kept her for observation again. The redness started to subside. We headed for home about 6pm. She had an earlier reaction on Tuesday, but it wasn't as bad, just swollen lips and no hives and welts.

Today she was set for her lab draw anyway. They drew some extra blood to send for some allergy testing. It took FOUR sticks and TWO nurses to get enough blood from poor Janna. She was so good though. He labs looked okay. Her liver is still HAPPY. Her white count is up and her alkaline/phosphatase is declining. Her prograf level was fine at 11.8. We saw her pediatrician later in the morning. He is going to test for: egg, whey, wheat, nuts and soy. It will take a couple of days to get the results. In the meantime, we are to avoid these foods and put her on rice milk. We are getting an Epipen in case she won't take the Benadryl again. We are also getting the Benadryl flavored to see if she will take it easier. It is such a fight to get her to take it. She just ends up spitting it out. The doctor still thinks she has the GI bug that is going around and it will have to run its course.

With the help of some of our liver friends, we did some research on the internet and found some articles about the increased incidence of allergies after transplantation. I took the articles to our pediatrician. He is going to do some research of his own and order another test on her immune system.

I hope we get some answers soon. It was scary not knowing what the effects of the allergic reaction were going to do to Janna. Luckily, she was still able to breath. They say each allergic reaction can worsen. I don't ever want to see this or any reaction again! Lisa, I don't know how you made it through FIFTEEN episodes and Aiden's were much, much worse than what Janna experienced!!!

One day and now, one FOOD at a time. We will have to read, read, read the labels. Our baking may have to be modified too! I just hope the diarrhea stops, we find out what caused the allergic reaction, she stays healthy and her liver stays HAPPY! Is that too much to ask for....

**Tuesday update***
Amazingly Janna drank the rice milk without stopping. I think she likes it. And how can I forget...she slept through the night!!!!! That hasn't happened since she started with the diarrhea almost four weeks ago!

Omaha has decreased her prograf level to 1.5mg. She will skip labs this Thursday and we go to weekly labs until they make sure this prograf level stays stable and then we go back to every other week labs as we were before all this diarrhea!

Our local nurse called to say that it is definitely an allergy and not a virus, but that it would take 3-9 days on the RAST tests to find out just what she is allergic to. We will just try to avoid the suspect foods and wait. We can draw more blood on MOnday if we have no confirmed suspect foods too. Oh how we are used to waiting...

***Wednesday update***
The good news to report today is that Janna had only ONE stool all day and it was firm! We are celebrating with our fingers crossed...the end may be in sight.

***Friday update***
No news on the allergy tests. I was hoping to get some news before the weekend, but at 4pm, it doesn't look promising. Janna is acting much better too. She has had nothing but firm stools since Wednesday, which is so much better than before. She loves her rice milk, Rice Krispies, brown rice, rice cakes.....

Thursday, December 8, 2005 9:26 PM CST

Janna is now FOUR months post-transplant! That is so hard to believe. The more unbelievable fact is that Janna has had diarrhea for THREE weeks now. Just when we think it is getting better, here comes more. This week has been better, so I hope it is a good sign. Monday she only had two stools, Tuesday and Wednesday four each and today only two, but it is only 9:30pm. She is not sleeping well at night. It seems as if she is only sleeping three to four hours at a time. Today she seems to have a lot of gas that is causing her some pain. Now Omaha wants us to track everything she eats between now and Monday. They will have the GI and nutritionist review it to make sure it is not a food issue. We have added no new foods recently and have pretty much eliminated diary products and most fruits and vegetables, since they contain so much fiber. It is starting to affect her labs, so I hope it stops soon and she can resume a regular diet again. I know she has lost weight too.

Her labs were okay. Her liver numbers are great. Her white count is back down to 4.2 from 5.5 on Monday, so there is something still going on in her body. Her alkaline/phosphatase is back up again and almost as high it has been at 6577. Her prograf level is up to 12.2, but I didn't get a call today from Omaha, so unless they call tomorrow, her dose will stay the same. Her protein, calcium and albumin are all lower than before she got this bug.

I did call the pediatrician's office to see if any child has been diagnosed with anything other than gastroentritis, but there have been none. The nurse said most of the kids that have the vomiting, only vomit a day. Those that get diarrhea have had it ten days. So it may be that with Janna being immunosuppressed, she will take 2-3 times as long to get rid of it.

Janna will have labs drawn again on Monday and on Thursday if she continues to have diarrhea. Next Friday she will have her monthly synagis (RSV) shot and monthly checkup.
It was ZERO degrees with some snow on the ground when I took the girls to the doctor today. I sure hope it warms up some, but I guess it is winter in Kansas!

Friday, December 2, 2005 10:04 PM CST

****weekend & Monday update below****
Well, day FOURTEEN and Janna had only ONE stool today so far (it is 10pm)!!! Yipee!! I hope the end is in sight! Omaha decided they wanted labs today, so Janna had to be stuck again and then again on Monday. They want to monitor her anti-rejection medicine level closely to keep it between 7-10. Our favorite nurse was not there this morning, but Annette came through and got it on the first stick. Malina sat in another room and waited. Her favorite nurse came in and read to her again. I wonder what her babysitter fee is!! The labs results came back this afternoon. Finally her alkaline/phosphatase is starting to lower. Her anti-rejection level was 10.0, so no changes there. Her liver function tests are the lowest EVER! (GGT 10, AST 30, ALT 17) Her white count even came up again. I am so thankful that her labs were better. It also showed that she was well hydrated, which is a big concern when she was having 6-7 stools a day. Hopefully the diarrhea is over and now we can deal with her anti-rejection medicine level again. She will have labs twice a week until the diarrhea is gone. I am going to have her weighed next week just to see how much weight she has lost. I know she has lost some.

Scott got some good news...and offer on a better job at the same company. Exiciting news for him. It is more his type of work. Scott had a holiday party tonight with his Big Brothers/Big Sisters group. I was supposed to go along too, but my neice who offered to watch the girls had a co-worker who called in with strep on Wednesday. I decided to stay home and avoid another bug. Now strep throat and whooping cough is going around, along with the GI bug that Janna picked up, probably from the doctor's office.

Malina was hard at work today helping me bake bread. When we were about finished and had flour all over our clothes, she went to the drawer and wanted to put her apron on! Good thinking Malina!! She loves to "help" me bake. Janna was "washing dishes" in the sink after she got bored with our bread baking. Malina did let the water run in the bathroom today, WITH the stopper IN. There was a waterfall cascading down the cabinets by the time I found it. What a mess! She really felt bad about it. We were just glad that Scott was not home at the time. He really hates "water out of the sink". Janna held up her finger and said "don't do that" to Malina.

I have been anxiously awaiting this weekend. My girlfriends from McPherson and Kansas City are coming to Wichita to SHOP, SHOP, SHOP. We have done this for at least TWENTY years. We usually go to Kansas City to shop, but having kids has changed that one for me. We usually plan on the first weekend after Thanksgiving. We have been known to shop until midnight and then crash. We would arrived home with a van full of "stuff". It was great fun. Mr. Mom, Scott, will be in charge of the girls. Since Janna only has two meds in the morning and one at night, and I will be home for med time. The capsules are really hard to open.

Here's hoping for a quiet weekend health wise. I will update more after MOnday's lab draw.

Sunday PM update:

Well, so much for Janna getting better. After having only one stool on Friday, she had three on Saturday and has had TEN today and six of them were in a twelve hour span from midnight to noon. Yes, I had just gotten home and crawled into bed from my shop-til-you-drop day and Janna started crying thirty minutes later. She had stooled and was hungry already. Then she was up from 12:30 until 2am. Malina woke up THREE times as well. I guess she was checking to make sure I was really home. This was the first time that I have been gone from home for so long...twelve hours! I had a good time with my friends. It was nice to get out of the house. My plan to take a nap Sunday afternoon didn't happen either. So, we are off for labs in the morning. She will have labs on MOnday and Thursday until the diarrhea is gone. I sure hope Kelli gets the lab draw the first time and we are out of there before she catches something else!

****Monday update***
Well, today was a much quieter day in the poop department. She only had TWO stools, but, yes, it is only 10:30pm, so there is time for more...but let's hope not! Janna had her lab draw this morning. Our favorite nurse was not there, but Annette, the second in line got her draw the first time! Her labs look pretty good. Her liver is still HAPPY. Her white count and alkaline/phosphatase is improving. She did not eat really well today. She ate, but I gave her what she wanted, even though it wasn't nutritious and a balanced meal. Her prograf level was within the limits Omaha was looking for. Janna will have labs again on Thursday to make sure she continues to progress. I am hoping for a quieter week. Poor Malina asks each morning if we have to take Janna to the doctor. It does seem like we go everyday! Janna gets in the car and says we are going to Grandma's house...I wish! The mornings are getting really cold here. It was in the teens this morning while we were out! Here comes winter!

Tuesday, November 29, 2005 9:26 PM CST

I know you have heard enough about diarrhea, but poor Janna is on day ELEVEN...not that I am counting! Enough is enough! I want a diarrhea-free home again!! I forgot what it is like and I am sure Janna has too. She has said numerous times that her poo-poo hurts and I am sure it does.

Labs were drawn again on Monday. Poor Janna has had labs drawn FIVE times in nine days....ouch! To add to the misery, it took three tries and two nurses to get the lab draw on Monday AND I left her binky in the car!! Shame on me!! She was so good though. Malina didn't want to even be in the room (and I don't blame her) and it was a good thing since it took so long and they had three tries. Kelli, our favorite nurse, normally gets it the first time. Malina sat in another exam room and one of the nurses (they are so nice to us) read her stories until we were finished. Her labs were about the same as Friday. Her ALP (alkaline/phosphatase) is still climbing, but not as fast. It is now 6591 (normal is under 390). They are still saying it is NOT liver related since her liver function tests are all in the normal range. ALP can be found in the bone, intestines and liver. She must have a stubborn GI bug. Her white count went down again to 3.9 too. Her prograf level was much better at 9.1, so she will stay on the reduced RX. All her stool cultures have come back negative as well. There is only one that had to be sent out. It was the Norwalk virus (cruise ship virus). No, we didn't go on a cruise either, but that sounds like a good idea especially since we had blowing snow yesterday and highs in the 30s. I am waiting to hear what the plan is for the next lab. Since the ALP is still on the rise and her bilirubin went up slightly, I am hoping they want a draw on Friday. Today was the first day that I can say she really was feeling bad because of her diarrhea. There was about an hour that she just wanted to be held...and that is not Janna. She hardly sits still.
I hope her diarrhea ends RIGHT NOW and her ALP starts to decline.

We had picures taken the day before Thanksgiving, so I hope to get them posted soon. We are homebound until the diarrhea clears up. I am glad none of the rest of us have been affected, but why Janna!!

Please say a prayer for my cousin who lost her TWO WEEK old baby boy to SIDS over the weekend. I was devastated to see that tiny baby in a casket. I used to babysit her and her siblings.

****Wednesday update***
Janna's stools slowed down a bit today. The total as of 10:30pm is only THREE!! I hope this is near the end. Both today and yesterday afternoon she became really clingy and wanted to be held for over an hour. Then she was tugging on her ear and stumbled several times when she was walking. She also ate very poorly at lunch and acted like she was having trouble swallowing. Since she had fluid behind her ear on Friday, I thought I had better take her to the pediatrician's office and make sure there was no ear infection. By the time we went, she was back to her old self, running everywhere. So, off to the doctor we went for the last appt. of the day. An hour later, we found out she had no ear infection, but her throat was a little red and bumpy. Seems that strep throat is making its run in Wichita. So home we went. I told the nurse that Janna should have a dedicated exam room from now on but that I wasn't coming back this week.....hopefully! I hope she is able to sleep through the night again. I sure could use some sleep too! She was in our bed early this morning from 3am after a horrible stool.

Monday, November 21, 2005 10:01 PM CST

****end of week update below****
Well, I wish I could say this was a quiet week....but Janna had a bout of diarrhea and one awful episode of vomiting Saturday night, which continued into Sunday morning. I called Omaha because diarrhea and vomiting can affect the absorption of her anti-rejection med. Well, at 8:20am, Sunday morning, we arrived at the local ER for labs and to check that Janna wasn't dehydrated. If you have been to the ER, you know the drill. You get through the check-in procedure, go to a room and thankfully they had an empty one. The nurse sees you to find out what's going on and then the wait for the doctor. Well, I guess this doctor decided not to "hear" what I was saying. He ordered lab work for Janna and IV fluids. Next was three sticks and about thirty minutes to "finding" a vein to draw the blood and start the IV. After the IV had run, which was about three hours into our stay, I asked about the labs. There must have been a shift change, but none of the same nurses were there. She gave me a copy along with Janna's discharge papers. They did NOT run any of her liver profile labs or her prograf (anti-rejection) level. I was livid to say the least. She asked if I wanted to see the doctor. Before I answered, Janna was saying "yes". Well, it wasn't pretty, but I did "talk" to him. I reiterated the fact that Janna had a LIVER transplant and that the reason we were there was to check her liver functions and prograf level. Well, he didn't seem to recall any of that conversation. To make matters worse, I asked him if he had a copy of Janna's latest lab that I brought with me. Well, he did. I told him that I asked both him and the nurse who drew the blood to make sure that all those levels were checked while we were there! He said he would add on the tests. He did diagnosed gastroenteritis and gave me a RX for some suppositories for vomiting. What a joke! She had vomited once more than twelve hours prior. I called our pediatrician on call as we were leaving and told her the problem with the lab requests. We arrived home FOUR hours later knowing nothing more than when we left. I did call the lab and ask what further tests were done. He didn't order all of them. I called ER and he came to the line. He was much nicer this time and listened to my request for GGT and magnesium to be added. She had no fever and no other issues. The pediatrician called later to tell us that all her liver functions were normal, except for her alkaline phosphatase. It was 3765. Normal is 117 to 390. Janna's level two weeks ago was 177. This can indicate a blockage in the bile ducts. Normally there are other liver function tests that come back high based on this number, so we are hoping it was a false test. She was going to call Omaha. She did and called me back. Janna's prograf level came back at 4.4, which is really low for being this close out of transplant. They wanted Janna to repeat labs Monday morning and we would go from there. Well, Janna was to have her labs drawn MOnday morning on her two week cycle anyway, but two days in a row!! We haven't done that in a long, long while. Janna had only two more stools on Sunday afternoon, so her diarrhea was slowing down. They were becoming pasty and not so watery. She did wake up at 1:45am because she was so hungry.

Monday we went for labs. It was so nice to have our nurse Kelli. She got a vein the first time and she was done. We did see the nurse practitioner to make sure she didn't have a dehydration issue. She was cleared of that problem. We decided to forego her hepatitis A and pneumonia shots until this issue resolves. She had three stools Monday. The two in the morning were pasty. The one mid-afternoon was watery again. Her labs came back and all her liver function numbers came back in the normal range. AST and ALT were up a point or two and her GGT was down. Her bili stayed the same as it was two weeks ago. BUT her alkaline phosphatase was even higher at 4879!! Then her prograf level came back at 15.2! It hasn't been that high since right after her transplant. It could be higher since she is only taking her steroids every other day, or it could be another false test. The results came in late, so we didn't hear from Omaha on MOnday to explain what is going on. The pediatrician did say that they have seen a lot of kids at their office with diarrhea and vomiting. She has also seen their alkaline phosphatase as high as 12,000 and that was a non-liver child. So, I will wait...until NOON and if I haven't heard from Omaha, then they will hear from me!!

On a happier note, I have been catching up on all my medical and dental check ups that I pushed off while Janna was in and out of the hospital. I am now caught up and there is no real bad news!! I will say that Scott needs a lesson or two in giving medicine though! I had my colonoscopy on Saturday (yes, colon cancer is in my family). Scott and the girls picked me up. I was asking about when the girls got up (I had to be there by 6:15am) and when Janna had her prograf. Well, he looks at me and says he FORGOT to give it to her! Now, he remembered her blood pressure med, but not her prograf!! We raced home and gave it to her in the car. It was about an hour late. Then we raced to Krispy Kreme, as Scott had promised the girls a donut on the way home!

We have so much to be thankful for this year. First and foremost to Janna's donor family...and her surgeons, doctors and nurses who took care of her these past twenty-two months. For our health that we take for granted so much of the time, for our family and friends and everyone who has touched our lives. For all God has bestowed on us, we are thankful. Happy Thanksgiving to everyone!

Please keep Janna's donor family in your prayers. Holidays will be a tough time for them.

Tuesday update: Omaha wants Janna to have labs again on Friday. They are not really concerned about her ALP level since her liver is HAPPY. They are concerned that her prograf level came back so high after being so stable. We will take another stool sample if things aren't better in that department. Our favorite nurse, Kelli, has to work on Friday, so we will see her. Janna is still having some loose stools and still taking three plus hour naps. Hopefully this will resolve soon!

****Friday update****
Janna had to repeat labwork today. The diarrhea end Tuesday afternoon, just in time for Thanksgiving. She got to eat a nice turkey dinner. We left Grandma's house before a lot of people arrived so she wouldn't be exposed to even more germs. Well, the diarrhea came back about 7:15pm Thanksgiving night. She woke up three times Wednesday night and twice on Thursday night. She had SIX stools on Friday. The labs were repeated and I also took in another stool sample. The labs were back about noon. The good news is that her liver is HAPPY. The liver numbers are even lower than MOnday's report and some are the lowest they have ever been. The bad news is that her prograf level (anti-rejection) is at 19.7!!! Her level Sunday was 4.4, Monday was 15.2 and whew!! Above 20 is considered TOXIC!! Her normal level is about 7. Her alkaline/phosphatase was even higher at 5398. The normal is below 390. I waited and waited for Omaha to call. I gave up about 5:45 pm and called. They didn't get the fax!! Our local doctor faxed two sheets and I faxed one that came later in the day. Both of them were sent to the same number and neither arrived?? They decided to lower her prograf to 2.0mg twice a day and repeat labs on MOnday. The only news on the stool sample as of yet is that it is not rotavirus. My theory is that her second bout of diarrhea is from too high a level of her prograf. She was picking at her ears too and very crabby today. I had the PA check her ears. One had fluid behind them, but no infection. Her throat was red too....so maybe something else is on its way. I hope not! I hope lowering her dose helps her sleeping at night too! It may be a long weekend!

Sunday update****
Janna still was up in the night and still had some diarrhea, so I took her for labs again Saturday morning just for a prograf level check. Since it was so close to being toxic, I wanted to make sure it was on its way down...and it was 11.6!!! Well, just when we thought her diarrhea was getting better, it starts up again. She had six stools on Friday and Saturday, but she had a break for twleve hours Saturday. She was fine from 9am until she went to bed. She woke up at about 11pm and had two stools back to back. They were horrible. Today, Sunday, she has had only two (and it's 3pm) and she usually has one every day. So, tomorrow she will have labs again. Since they lowered her prograf, all levels will be checked again. She will probably have labs once a week until her prograf level is stable. I sure hope the diarrhea stops. She is miserable when it happens. She knows it is coming and it wakes her up.

Tuesday, November 8, 2005 3:21 PM CST

THREE MONTHS POST TRANSPLANT TODAY. I can't believe it! In some ways, it seems so much longer ago than three months. In other ways, it seems like yesterday. I have to say that Janna's post transplant road has been much smoother since pre-transplant. Before her transplant, she had a lot more medicine, a risk of bleeding and that huge belly that interfered with so many things. She was also hospitalized four times for cholangitis and came home with a PICC line all four times and I had to give her IV meds for another three weeks. She had two EGD scopes, hundreds of sticks for blood draws, IVs, you name it. She has had hours of time when she could have no food or drink. Janna has been through a lot in her short 22 months of life.
Janna's meds were decreased today. She stopped her Acyclovir and her steroids on taper will be every other day for another three months. That makes only four meds. Her prograf twice a day. Her steroid every other day. Her bactrim only on MOndays and Tuesdays and her blood pressure med once a day.
Yes, she is 22 months old. Her two year birthday is fast approaching. She weighs about 30 pounds and is wearing 3T clothes. She has more energy and is such a joy. Her vocabulary is growing every day. I think it helps to have big sister Malina show her the way.
We received Janna's lab results early for some reason today. Her white count is still low, but not by much. Her red count and hematocrit are a little high, but much better than being low. Her magnesium is still low, but not low enough for medicine, I guess. Her liver enzymes are still continuing to decline and all in the normal range. We are truly blessed.
The girls are getting over their colds. Thank goodness the cold did not affect Janna's liver numbers. Just a cough here or there or runny nose lingering. Malina is down to one breathing treatment a day, but that didn't happen until today. She really had a rough time with it.
We had cabin fever so bad the end of last week, we did go to the Zoo. I figured they couldn't contaminate the animals with their colds. We had a good time. The weather was beautiful and the Zoo wasn't crowded. The girls played with one of my girlfriend's daughters on Saturday. They had a good time. We enjoy the company! We even went to a tailgate party before my nephews football game on Saturday night. We only stayed for a quarter and it was time to go. The girls had had enough, or was it Dad chasing them up and down the ramp to the bleachers!!
I still get the comment that people think that since she has had her transplant, all is well again. Well, that is only partly true. She will have continuing medical care the rest of her life. She will have lab draws the rest of her life. That is the only way to know that the liver is being rejected. She will take medicine the rest of her life. She will always have the threat of her liver rejecting. It never goes away. She will always have the threat of the CMV and EMV virus, PTLD (a form of lymphoma), skin cancer. The list goes on and on. Don't get me wrong, we are so thankful for the transplant, but her care does not end there.
Our hearts go out to Janna's donor family. Without their gift, she would not have had the chance at renewed life. They are the hero. I can't imagine the pain they are still going through. They remain in our prayers.

Thursday, November 3, 2005 4:32 PM CST

Well, this week we WEREN'T supposed to go to the doctor. Well, we had to visit anyway. Janna started with the sniffles and runny nose on Saturday and progressed to a snotfest (stolen word from another liver mom) on Sunday. Then Monday she was so congested and a cough started on Tuesday. Well, Monday night, yes, Halloween night, Malina started with the sniffles. Her snotfest, and hers was much worse, was on Tuesday. She started to cough on Tuesday and by night, had to have nebulizer treatments of Xopenex every four hours to get her through the night and morning until we could see the doctor. Since the doctors were in meetings all morning, the earliest appointment was at 1:45. I had both girls checked from top to bottom since RSV, croup and the whooping cough are all in Wichita at the time. I did have to call the transplant team to find out what I could give Janna for her cough so she (and Mom) could get some rest. Janna can have no other drugs without an approval from the transplant team. Malina needed to add a steroid to her nebulizer treatments for a few days to give her some relief. They are much better today (Thursday). So I hope the worst is past us. This is much too early to start the cold and flu season. So, Halloween consisted of the girls going to the local Halloween parade in our subdivision and Malina going trick-or-treating about 30 minutes with Dad. That was enough for her. She was worn out. Janna loved to watch the kids come to the door. She wasn't too keen on getting too close to them though.
I think the girls picked up this bug from the doctor's office when we visited Dr. Daniel last Thursday. I guess I wasn't obsessive and compulsive enough about the hand washing while we were there. Scott's carefully carved pumpkins didn't make it until Halloween this year. Oh well, we will try again next year. We are enjoying some unseasonably warm days these days. The last few days were in the high 70's. We are looking forward to seeing our good friend Rose and her daughter Sarah this weekend. The girls play together so well. Janna has labs next Monday. Hopefully this cold will not affect her liver numbers. I have already warned Omaha about her cold. Until next week...

Wednesday, October 26, 2005 10:27 PM CDT

Another week with a HAPPY liver!! Janna had labs on Monday this week since our usual nurse was on vacation...how dare she!! They took her late for the lab draw, so I didn't have them take her blood pressure. It took TWO days to get her prograf level. That was torture. They talked about increasing her dose again if the level was too low. Well, her white count is still down and her red count is still up a little. Other than her magnesium still being low, everything else was in the normal range. Her prograf level was 7 and the nurse called today to say they are going to keep it where it is. They also took her off the magnesium to see how she does on her own for the next few weeks. The nurse fought when we left Omaha that the low dose she was on wasn't going to help anyway. So, maybe someone listened to her. Hopefully her level will continue to increase on its own. The best news, other than her liver is HAPPY, is that Janna goes to EVERY OTHER WEEK lab draws!! I told Scott I think they are tired of dealing with my questions, so that is why they are moving her labs to two weeks. More than once I have gotten the reply from Omaha, "just let us worry about it". Well, they don't know me well enough to know that that is not what I want to hear!! So, Janna is on only five meds now. They believe her low white count is due to the bactrim (antibiotic) she will take for a year and the acyclovir, which will end in two weeks, but they are not concerned. We are approaching week TWELVE on Monday!

Since Janna is back to sleeping through the night again (I know this will jinx it), Malina now gets up at 3am, you can set your clock by it. She asks Scott to turn on her music and she goes right back to bed. We are now bribing her with books. I sure hope it works. The time change is coming up Saturday night. That will only make things worse. Malina is balking at taking naps lately. I can't complain much though. She stays in her room for almost two hours and "reads" her books. She is so content with her books. She loves it better when Janna is knocking at her door and she tells her she is reading and doesn't want to play. Janna just hates it when the door is closed and she knows Malina is in there!

My neice got married in Andale last Saturday. Malina and I went to the ceremony and reception. Scott and Janna stayed at my Mom's, one mile away. We were going to take turns watching Janna and going to the reception. Well, when I went to trade with Scott, he and Janna were asleep on Mom's bed. They looked so peaceful. No, I didn't get a picture, though I wanted one. I was afraid the click and/or flash would wake them. Malina and I hurried back to the "party". Malina had a blast. She couldn't wait for the dance and dance she did. She danced to every song until she just gave out. She told Scott her feet hurt and she wanted to go home. It was only 9pm! We had expected her to last much longer, but she had no nap!

We made Halloween sugar cookies today. What a mess we made, but they sure had fun. Well, Malina helped me and Janna was doing the dishes. She loves to stand at the sink and play with the water. We won't tell Scott how many spills there were. Our neighborhood is having a Halloween parade on MOnday. This will be our third year! We hope for good weather. It has been really cold here lately. I feel like we have been cheated out of fall.

Thursday we are going to visit Dr. Daniel and Gayla from Children's Mercy. They will be in Wichita for Clinic. We are going to take them some treats and see them on their lunch hour. We got so used to seeing them monthly, we miss them! Then we are going to sneak in a visit at Grandma's since we are halfway there anyway!

I am working on finding my roots...hair that is. I decided to stop weaving my hair this summer, but decided to wait until this fall. So, if you see some pictures of me with dark, dark hair, it is me! I didn't know it was so dark. It will be darker than Malina's, but a little lighter than Janna's. We will have to wait and see. It is a work in progress. The first time didn't quite cover the blonde! Oh well, it is only hair!

God has sure blessed us with two very sweet girls. Janna is so happy and active. You can't imagine anything was ever wrong with her. Malina is a great big sister. We have so much to be thankful for.

Thursday, October 20, 2005 10:10 PM CDT

Another week and another HAPPY liver! Janna's labs were pretty good again. I just can't say great unless EVERYTHING is in the normal range and that may never happen. Her white count is just under normal. Her red count, hemoglobin and hematocrit are just above normal. I am not going to complain since there are so many of her liver buddies who are taking an iron supplement because they are anemic or have low hemoglobin. Her magnesium is still low, but it was up from last week and is almost normal. Her blood pressure was 110/62, which is higher than they want, so she will continue the Norvasc. The worst part is that her trough level of the anti-rejection medicine was low again at 6.6. They didn't call to increase the dose, but if it is low again next week (under 10) they probably will. It is so weird that it is so unstable from week to week.

Malina went along, but asked to leave the room when it was time for the blood draw. She always wants to see what kind of band-aid Janna gets and always kisses it to make it feel better. Our favorite nurse, Kelly, will be on vacation next week, sooooo, we are having labs drawn on Monday by a nurse who is used to drawing labs from toddlers. We hope it goes well.

The girls got to play with some boys last Saturday at our house. It was a short visit, but we are trying to have some fun before we have to hibernate for the winter. On Sunday, they got to play with another friend. They had a really good time the whole weekend. Janna has a few extra bruises this week. She loves to climb on Malina's bed and play with her stuffed animals on her bookcase headboard. Well, she got too close to the side and took a spill off Malina's bed. I think it scared her more than anything. It was one of those times that Malina and Mama, forgot to keep her door closed. Then, if the girls were playing football, Malina would have had a clipping penalty. Poor Janna was just trying to cross the room to get to me, but Malina, who doesn't share well yet, thought Janna was going to get her flash cards. As Janna was running in front of her, Malina dives down in front of her, clipping her feet out from under her. Janna landed on Malina, but her head, face first, hit the hard wood floor. She cut her lip and it was swollen too. I think her lip was cut from her MedicAlert bracelet. It was bleeding pretty good. It scared Malina, but only for a few minutes. I can't leave them alone for a nanosecond! Janna's favorite thing these days is to jump on the couch and jump and jump and jump. One day Malina told Scott that Janna was a naughty girl from jumping on the couch. Scott asked Malina who taught Janna that. She answered, "me" and then said "sorry". At least she got that right!

There is some bug going around Andale, so there was no visit to Grandma's house this week. Our outing was to Target. After hearing Malina want everything in the store and Janna, who knows just how to get water out of her sippy cup without putting it in her mouth (her shirt was soaking wet), I was ready to leave after ten minutes. It helped that I took them to the Halloween isles and they settled down some. When we got to the checkout, I noticed that Malina was eating something. She had opened the bag of frozen french fries and was eating them. When Janna saw this, of course, she wanted some too. I guess that is better than opening a bag of candy in the store. They love to eat frozen vegetables while I am cooking them.

We are looking forward to a neice's wedding on Saturday and a birthday party on Sunday for one of Malina's friends. Since the wedding is in Andale, Janna will stay at my Mom's and Scott and I will go back and forth to the wedding with Malina. The birthday party on Sunday is outside, so Janna will be able to go and play. Thanks for checking in on us.

Friday, October 14, 2005 3:36 PM CDT

Well, Janna is approaching week TEN on Monday. She had another lab draw on Tuesday. Her labs were pretty good. Her red cell count is still high, but barely. Her hemoglobin and hematocrit are back in the normal range. Her white count is just under normal. The most important part is that her liver is still HAPPY. All her liver enzymes and bilirubin are in the NORMAL range. Her magnesium is still low, so she will continue on her Maginex, but she doesn't mind drinking the mix. Her prograf level came up after last week's increase, but is still under 10 at 9.3. She has been waking up at night again. You can count on it about 2-2:30am. So, mean ole' Mom is making her soothe herself back to sleep. It doesn't take long, about 5 minutes of off and on whining and she is back to sleep. She isn't hungry or she would be telling me "milkie" and I could be able to hear her through the monitor. She is still going 150mph all the time. I will be glad when she comes off the steroid so she doesn't have so many bruises. She likes to climb and jump just like Malina, only she isn't as skilled as Malina. She is talking so well, saying 3-4 word sentences too.

She had her "first" pediatrician visit today since her transplant. She will continue to see him once a month for a checkup on her blood pressure, weight and nutrition issues. I am so glad for that. He will help monitor her and watch for other warning signs. She weighed in at 29lbs 6oz, so she is continuing to grow. She is wearing 3T clothes most of the time. She started her synagis (RSV) shots today. She will get a shot every month until the RSV season is over, which will be March or April. Malina went along and told Janna how brave she was to get a shot. I didn't have the heart to tell Malina that she will get the flu shot the next time we are there. We are going to wait for Janna's flu shot until she is on every other day steroids. There is a slim chance that the shot will work, but it will be increased if she is on a lesser dose of steroids. She will start to taper to every other day in early November. We are truly blessed that she continues to do so well.

Malina is still growing like a weed as well. She is now 3 1/2 and will tell you that. That half year is soooo important. I tell people that she is 42 x 42. She is 42 inches tall and 42 lbs. She is out of the toddler clothes and has been for some time. She wears size 5-6. I think she is going to be tall like her Dad. She loves sleeping in her regular bed. She has figured out all the delays to go to bed...I need some water. I have to go to the bathroom. Can you read me one more book. Can you kiss me goodnight....and on and on it goes. Maybe she will go to sleep earlier when the time changes later this month. Ha!

Scott has applied for a job in a different department at Boeing. The start date is November 11th, so he should have some news soon...and we hope some good news!

I am still trying to clear up insurance issues, which seems like my main job right now. Then I am trying to get some cards ordered for thank yous from Janna's walk, but I am having a hard time picking out a picture from the many Scott took that day. Thank you again for all those who helped out with the Walk for Janna and for all those that made donations. A special thank you to a member of our congregation that donated all the proceeds from her paintings for a year in honor of her son. We are truly blessed with such good friends and family. Hopefully it will be another quiet week...and no shots for at least a month!! Right now Janna is pretending to be a kitty. She is on the floor crawling like one, meowing and licking my leg just like a kitty! Thanks to Malina, she knows just how to do it!!

Wednesday, October 5, 2005 9:13 PM CDT

The Walk for Janna on Sunday was awesome! It was so good to see family and friends, but it was so hard to talk to everyone. I told Scott I felt like the bride at a wedding and there just wasn't enough time to talk and be able to watch the girls. It was an unseasonably warm day, 88 degrees and a 30 mph wind....good ole Kansas!! Scott clicked some good pictures and I hope to have them posted this weekend. A girlfriend drove from Kansas City and an old college roommate from McPherson. I haven't seen them in a long while. My family did a great job setting up and my brothers (I have SIX, but not all of them were there) did the cooking. I hope Scott got a picture of that!! The nieces and nephews helped with the walk and raffle. Malina was so excited, she got to draw the names out of the box for the raffle. Our Congregation's Youth Group was great too. They helped with the raffle and walk and there were as many from our congregation as there were family. It was great to see so many of them since we don't make it to service very often. It was a great day for a drive to the sprawling metropolis of Andale, population 500. Janna was so busy petting the dogs, trying to eat the ice out of the coolers and off the ground...and giving MOM a heart attack in the meantime! We hope for no outbreaks of disease this week...PLEASE!! We were there only ten minutes and she was trying to run and fell, with a sucker in her hand, into a pile of dog poo! It was a horrible start. We almost made the whole two miles with both of them in the stroller, but by the end both girls were walking. They had fun on the playground equipment. We were the LAST ones to leave the Park. I mean no one else was there. We had to bribe them with an ice cream cone to get them to the car. Neither of them had a nap so, of course, they feel asleep on the way home. Malina stayed awake long enough to eat her ice cream cone. On the way home, she asked when we were going to do it again! Thank you to everyone for your donations and support. Hopefully there are more organ donors today because of it! That's the most important message of all and Janna is living proof of it!!

Janna had her weekly lab draw on Tuesday. It took three nurses and four tries to get her blood pressure. By then it was not a good one, 106/56, so she will continue with the Norvasc. It took two sticks to get the lab draw. It was not a good day!! The results didn't show up until today about 1:30. Her liver is still HAPPY. All her liver enzymes are in the normal range! Hooray!! BUT, her prograf (anti-rejection) level is low again at 6.8. They want it to be between 10-15. Her red cell count, hemoglobin and hematocrit are all in the high range and higher than last week. Omaha called late afternoon to say they wanted to increase her prograf by 0.5. They are not concerned about the hemoglobin and such, only when it is low. Her magnesium was up too...so hopefully we can get off the supplement soon too! I just hate having her take meds if she doesn't need them! She will have her lab draw next week as usual. In response to some of my questions (and probably so I will bother them less), they want Janna to see her pediatrician on a monthly basis. I think it is a GREAT idea. In fact, I asked about that specifically when we were released and was told she didn't need to be seen, except for her normal visits. It will be great having another pair of eyes watching and following her. It will be great having someone else to bounce ideas and issues off of. I have no problem with that whatsoever. Janna and Malina really like him too. I just wish we were told this from the beginning. I think it will help a lot.

The girls are getting excited for Halloween...and it is one of Scott's favorite holiday!! We decorated the house today. After dinner, we shut off the lights and turned on the haunted houses and pumpkins and put on a Halloween tape. Of course, now they will want to do it every night until Halloween!! Malina is going to be a butterfly princess and Janna will be a cat. I just hope it will be warm enough for them to go trick-or-treating. Malina will be really disappointed if she can't go. I'm trying to finish a fall jumper for Malina so they can get a fall picture taken, but, it is hard to sew with so much help!! I don't know how I finished Janna's. We hope fall has arrived in Kansas. We are getting tired of the 90 degree days.

Please keep a fellow liver child, Haley, and her family in your prayers. She lost her long battle with liver disease and lupus at the age of 11! We are truly blessed that Janna received her gift and a chance of a healthier life...thank you again Angel Donor!

Tuesday, September 27, 2005 3:13 PM CDT

Well, Janna's lab draw was one day early this week. She had some diarrhea over the weekend. Diarrhea and vomiting affect the absorption of her anti-rejection medicine, so Monday morning we had to call Omaha. They wanted a stool sample to check for c-diff and bacterial and viral cultures. They also wanted her lab to be drawn to check her liver enzymes and trough level of the anti-rejection med. Her level came back at the all time lowest of 5.7...remember, they want it to be between 10-15. Her liver enzymes were all pretty much the same as last week, except for one, GGT, which was just barely in the high range. I talked to the transplant nurse Monday afternoon and she wasn't too concerned since her liver was still relatively HAPPY. She wanted to wait until she could talk to a doctor and find out about the stool sample. Her white count was down a little. Her red count, hemoglobin and hematrocit were down a little, but not back in the normal range. Her blood pressure was 80/52, so I hope she gets to stop the blood pressure medicine soon. The local nurse called this afternoon to say that all the tests run on the stool sample are negative so far. The viral culture will run for another two weeks or so. My theory is that Janna was eating too much fruit. Her worst day was Sunday and by Monday, she had only one bad one and none today. It didn't seem to bother her at all. In fact, the receptionist at the ped's office told the nurse when she called back to tell her we were there to "catch Janna if she could". She was running circles around the chairs since no one was there that early. She is still in HIGH gear. So, hopefully, all is well again. I hope next week's labs are back to normal again. I hate the waiting and wondering. I am one that doesn't want to wait until it is a huge problem. If the labs creep into the low or high range, I want to know why and what to do. She did get to stop the Lasix on Sunday. They think that may be contributing to the elevated red count, hemoglobin and hematocrit because of being dehydrated. I hope that's all it is!!

We went to our neighborhood park last night. The girls loved every minute of it. It was a beautiful evening. I think Fall may be coming to Kansas. Janna was scooping up sand helping Malina build a sand castle. Janna went down the slide with Scott a couple of times. Of course, like most kids there, there was a major fit when it was time to leave. It is a good thing we don't live too far that we can carry them kicking and screaming all the way home. We did bring some sand and rocks home with us.

We looking forward to seeing lots of family and friends at the Walk for Janna this Sunday, October 2nd at 3pm at the Andale City Park. There will be a raffle and BBQ. We hope to raise awareness of the importance of organ donation. With a little luck, Janna will be there to show her smiling face!

Thursday update: Nothing growing in any of the cultures. She has had no more stools like the weekend since Monday morning. Omaha called late Tuesday to say they were going to leave everything at the same level. Her trough level was low, but her labs looked good enough. We will draw labs again next week as usual....on we GO!!

Friday, September 23, 2005 8:11 PM CDT

All is well at the Wagner house. It will be SEVEN weeks on Monday since Janna's transplant. That seems unbelievable. We have been home two weeks today. Janna is so full of energy. She is in high gear all the time. I guess we didn't realize how bad she was feeling. She can also get around a lot faster now...run, run, run everywhere!!

Janna had her lab draw on Tuesday, but we didn't get the results until Thursday. That was a long wait. Her liver is HAPPY!! All her liver enzymes are in the normal range. The only areas where she is out of the normal range is her white cell count and it is just under normal, then her red cell count, hemoglobin and hematocrit are all barely in the high range. I called the transplant nurse today and they are not concerned when it is high. They have been rising for the past three weeks. I asked about dehydration as being the culprit since she is still on Lasix (diuretic and hypertensive med). She will have to ask one of the transplant doctors if we can stop it on Monday. I hope so. She is having too many really heavy diapers. Then today she drank 10 ounces more milk than she has in months. She is talking so much. It is fun to watch the girls interact. Janna is starting to fight back when Malina takes something. She was pulling Malina's hair and trying to hit her when Malina took something from her. Malina didn't know what to do. She was in shock! Malina still has a lot to learn about sharing. She thinks it means to ask for it while you are taking it away.

Malina had her ears and lungs checked this week too. She was cleared. She doesn't seem to miss school much at all. We do "play" school at home. She really likes it. She is getting to be so grown up. She now wants to use our utensils and cups at dinner. She helps set the table and clear the dishes. If Janna happens to sleep through the night (and she is more and more again) then Malina gets up and wants her music on or milk in the middle of the night. You can almost count on it.

We did go to Grandma's house this week. It was nice to get out. The girls were so excited the whole way there. They had a great time. It was really hard trying to keep Janna from putting things in her mouth. When it was time to go, it was Janna cyring and holding on to Grandma. I asked her if she wanted to stay with Grandma and she told me yes. She was kicking and crying so hard, Grandma had to go into the house so she would settle down.

Scott had a boring week at work. I spent most of this week on the phone with insurance companies and hospitals. What fun! I think I am on top of it though. That is always a good feeling...until the mail arrives!! Tomorrow Malina and I are walking with a friend who is a breast cancer survivor in the Komen Walk for the Cure. Scott will stay home with Janna. Janna needs to get used to Scott taking care of her more. She is such a Mama's girl. Then Sunday we have a cousin's wedding shower in Andale. Again, Malina will go and Janna will stay home. It is also at 1pm and that is Janna's normal nap time. They will be disappointed, but there will be 30+ people there and a lot of kids and germs. I hope to get some new pictures posted this weekend. We are hoping for cooler weather. It is still in the 90's here. Until next week...

Thursday, September 15, 2005 9:35 PM CDT

Okay, for all you who were used to checking on Janna daily, I'm sorry, but you don't want to hear about life at home...Malina getting in trouble for sitting on Janna, for taking her toy away for the millionth time and Janna getting in Malina's room or jumping on the couch! If you do, please let me know. I will update here once a week with the week's highlights, unless there IS news.

Janna had her first weekly lab draw Tuesday morning at the pediatrician's office. Well, first they tried to get her blood pressure. After three nurses and each of them trying at least three times each, they gave up. They have no machine, so they have to do it the old fashioned way. So, I guess she will stay on her two blood pressure meds until next week. I hope they can get a reading next week. We will go every Tuesday for a lab draw. Janna, of course, slept through the night and I almost had to wake her to get there on time. I had enough time to change her diaper and hop in the car. She didn't even cry when they drew her blood. That was a good thing. I gave her the anti-rejection med before the left the office and she drank her milk on the way home. They can check the anti-rejection level here in Wichita instead of air mailing it to Omaha. Malina was supposed to go and have her lungs and ear checked, but they had to cancel her appt.

We finally received the lab results late Wednesday afternoon. I was beginning to think that no news wasn't good news. Her white count was low and her red count was high. Well, Wednesday morning she woke up with a runny nose. It could be allergies, because it is running clear and was much better today. We started the humidifier in her room just in case. Her liver is HAPPY! All her liver enzymes are in the normal range. Some went up some, but still in the normal range. Her carbon dioxide was low and her glucose was on the low side of normal, but that makes sense since she had nothing to eat or drink from 8:30pm the night before until after her blood draw. There was no call from Omaha, so I take it that they are happy with the results. Her anti-rejection med level was at 8.5, which is on the very low side, since they wanted her trough level to be 10-15, but if her liver is happy, they must have decided not to mess with it again. I did send an email to Omaha with some questions. If I don't have an answer, I will call since it will be Friday and I want to double check that they received the results.

I'm still trying to catch up on getting the house back in order. It will take some time. The girls are having so much fun playing together. Janna interacts a lot more than before, but I think it is just her age now. She is TWENTY months old today!! I am cleaning out closets and seeing what they each have to wear this fall. Janna, for the first time since she was two months old, is wearing pants!!! She wore a two piece pair of pajamas to bed. With her belly being so big and having portal hypertension, I did not put on any two piece outfits so that it would not bind around her stomach and cause more varices. Now, I don't have to worry about it!! Janna is so interested in Malina's potty, so I took her diaper off and let her sit on the "extra" one we had in the basement. She sat and sat and then got up...nothing. She sat again, so I decided to take a picture. When she got up, she had peed in the potty!!! Now, I don't think she is really ready at twenty months, but she was so happy and Malina, of course, had to come and look and congratulate her too! It was a cute moment! Janna's Medic-Alert bracelet came in the mail today. I will have to wait for Scott to help put it on this weekend. It will help in an emergency for one phone call to be made and have all her medications and other alert information. I sure hope she will wear it. We're hoping for a quiet weekend to continue to get caught up at home.

Sunday, September 11, 2005 2:07 PM CDT

Sorry for not posting for TWO whole days, but it is so good to be home AND there are a lot of things to get done before Scott goes back to work tomorrow!

The trip home was a long one. We were so anxious to get home. We didn't leave Omaha until 11:45. It took a couple of hours to load the car...trying to make it all fit. We donated toys to the playroom and all the food we had left. They were grateful. The girls were fine until it was time for a nap. Then Janna wanted me to hold her. They each slept about 1 1/2 hours, but not at the same time. It was so windy that we had to stop twice for Scott to retie the bag carrier on top. It figures that it would be a windy day. We didn't go the speed limit because of it. The SUV was rocking for part of the way home. We stopped in Salina for some sherbet and a bathroom. Of course, Malina didn't have to go....until we were fifteen miles down the road with no bathroom in sight! Well, we had bought an inflatable potty for Scott's trip to Omaha, but he didn't have to use it. We had to deflate it for the trip home, but it only took a few puffs and it was ready for use! WE arrived in Wichita about 5:50. Now, Malina started asking if we were in Wichita about five miles outside of Omaha. They were good. They played with toys and colored...and not a speck on the car!

It was so good to get home. We let the girls out to run! Janna found a "Welcome Home" sign and huge mum plant on the front porch from Deena, Judy & David Eichhorn. That was so nice of them to welcome us home. We are our dinner rather late and just let the girls play. Janna was so happy to take a bath. She took out running for the bathroom when I mentioned it. Remember, we had no bathtub in our room, so she went 33 days without a bath! She did get used to the shower though. Janna asked to go to bed about 9pm. She drank her milk and I rocked her until she was asleep. She woke up at 7am...she slept through the night!!! Thank you Janna. While Malina was watching a movie, Scott emptied the car. We couldn't drive it into the garage with the carrier on top. I emptied a few bags and called it quits for the night. It was Malina who didn't sleep through the night! I slept like a rock in our bed.

Saturday was spent unpacking, doing laundry and watching the girls run around the house. We had numerous spills as Malina doesn't understand not to chase Janna or to sit on her! That will take some time. Grandma did come to visit later in the afternoon and stayed for dinner. The girls were so excited to see her. They both took a nap before she got here. Janna is still getting used to being in her room to sleep. She is still obsessed with her binkies...she has to have one in her mouth and one in each hand to go to sleep.

More laundry today and getting things put away. Then the mail and all the insurance issues I have to deal with this week. I am also baking some cinnamon rolls to send with Scott to work tomorrow as a thank you to his department for the nice basket of cookies and balloons they sent Janna. Wow, I still remember how to cook and bake!! Scott is busy washing and detailing the car from the trip. It will be so clean I won't want to drive it!! Then he has to mow the grass before it has to be baled. All he has left is the back yard and it is rather tall. Maybe tomorrow the girls will be able to play on the swingset in the backyard again.

I will have to call Janna's pediatrician tomorrow to work out the details of her first lab draw. Also, they will have to check her blood pressure and Malina's ears and lungs to make sure her asthma is under control and her ear is better from the infection. The lab has to be drawn early in the week (Mon-Wed). It will be interesting since they don't open until 8am and the draw needs to be at 8am. I just hope we are able to get it all done at his office instead of driving downtown for the draw, but we will do what we have to do!! Did I say that we are so glad to be HOME!! We have so much to be thankful for!

Thursday, September 8, 2005 4:32 PM CDT

We heard the words we have been waiting to hear.....you can go HOME!!!! Janna will be on weekly labs through her pediatrician. She will have her blood pressure checked weekly as well. They decreased her blood pressure med to once a day and will decrease it as her pressures continue to look good. Then they will decrease the Lasix. Then, as soon as her magnesium level comes into range, they will stop the Maginex. She will stay on Bactrim for a year, prograf (anti-rejection) forever, unless they find some other way to infuse it, steroid for six months and acyclovir for three months. That's a lot less medicine than when we arrived. We don't have to come back to Omaha unless there are problems. They will get a copy of all her labs and work with her pediatrician if more testing or anything else needs to be done. For the next year, it will be at least monthly monitoring of her labwork through Omaha. She will come back annually to Omaha for her review. We can time this with their Transplant Reunion in Omaha. We feel so fortunate that Janna has done so well. She will continue to have ongoing medical care the rest of her life, but feel like she has gotten a really good start. Please understand that she can have a rejection episode at any time from now and for the rest of her life. We still have to be cautious about her getting sick, as all viral infections will affect her liver and there is a fine line between monitoring a viral infection and treating for rejection. Thank you angel donor family wherever you are. You have given Janna a chance at a healthier life and we are forever grateful.
We are so excited about coming home! It has been 33 long nights, not that I have been counting or anything! Now comes the task of trying to fit everything in the car. It will be a tight fit!! I can't wait to sleep in my own bed. I also have a new appreciation for the dishwasher. I have scalded my hands so many times these past weeks washing her bottles and making sure they were clean and no soap residue. Also, to have a car to be able to come and go on my own! Most of all, though, just to be together again with our family in our home and to be back in Wichita near our family and friends. Thank you to everyone for all your support during Janna's transplant.
UPDATE 10pm: Well, Janna is keeping true to form...she is still awake. Right now it is Scott's turn to tire her out. I sure hope she remembers how to go to sleep on her own again once we are home. Scott mapped out the vehicle and he "thinks" everything, including us will fit in the SUV, but it will be a tight fit! We hope to be on the road by 10am, but who knows. Malina is sad that her vacation is coming to an end.
We did make it back to the Zoo today for a few hours. The girls sure had fun. We will say goodbye to all our liver friends in the morning. The next post will come from our home!!!!

Wednesday, September 7, 2005 10:19 PM CDT

Another up and down night. Janna cried out at 9:30, was up at 10:30 for a few minutes and then was up from 11-11:30 and drank a bottle--she even asked for some milk. Then she slept until 6, drank a bottle and went back to bed until 8...just in time for her medicine! We had an uneventful day. Both of the girls took a late nap. We played in the room and had fun. The girls had a blast playing with the car top carrier for the roof Scott bought so that we can get everything home...and yes, there are pictures. They would get inside and cover up with the top of it. We hope to be able to donate some toys and food to some of Hurricane Katrina transplant patients who have been transferred here. There are three families (sounds like they are older than Malina) so far and they are looking for others. They are trying to locate all of the patients who received transplants here that are in the hurricane's path. Most are here with only the clothes on their back.

Janna got up last from her 2 1/2 hour nap at 4:45, so we didn't get out of the room until 5pm. It was really hard to get anything done with one of them asleep in each of our rooms. I went through the insurance claims and receipts that had come in since I had been away from home and made my long list of who I had to call to get things straightened out. How exciting!! We ran some errands just to get out of the room and went to eat in the cafeteria. Then we went to a playground and let the girls play. One problem though, Malina had to go to the bathroom and not one in sight! Needless to say, we didn't get a ticket for indecent exposure...and then they continued to play. We stopped at the waterfall on our way back to the room (Malina calls it the wishing well) and the girls threw some pennies in. Well, we don't have to tell you what we wished for!! The girls took a shower together since we have no bathtub. They really like it. Malina was scrubbing Janna's hair...and, yes, Scott took some pictures!

Tonight we had tag team wrestling with Janna. I took the first 50 minute shift, then Scott with 20 minutes and then I finished up with another 15 minutes. With such a long, late nap, Janna did not go to sleep until 10:25. Malina didn't go to sleep much earlier at 10:10. I sure hope they get back to their "old" bedroom routine of being in bed between 8-8:30! I need some "ME" time! Well, we are hoping for some good news tomorrow. I did call the transplant nurse just to make sure they did not need a lab draw in the morning. She said her labs were still solid and they would NOT need one! I hope to be posting "going home" tomorrow!!

Tuesday, September 6, 2005 9:50 PM CDT

Well, I made it tonight. Both girls only took a one hour nap today, so it was an early night. Janna gave in at 8:20, but Malina held on until 9:25. Scott and I had to get in our bed at 8:30 and pretend to go to sleep so Malina would too. Well, we fell asleep before she did and now Scott is still asleep. The night owl I am, I'm up and around in the dark...and yes, typing this with a towel over my head and the computer screen to keep the light from hitting their eyes.
Janna had no lab today! I picked up her lab results from Monday and they look good. We had no call from the nurse today, so no news is good news. I will call tomorrow to find out if we have another this week or not. Her prograf level was 10.2, so it is hanging on at the low side of what they want. Her liver is still HAPPY and that is one of the most important things. The girls took an earlier nap, but we didn't get out the door to go anywhere until 4pm. In hopes that we are going home, we are thinking that the car will be very full. I had the single stroller already here. In anticipation of Malina staying with me too, Scott brought the double stroller. So, the car is pretty full before we load our clothes, toys and etc. Our trip was to Sears to check out their car carriers to put on the luggage rack of the SUV. Scott found one and it going to unpack the box tomorrow and see how much we can get in it. We do have a lot of "stuff" here...boom box, CDs, VCR tapes, books, magazines and toys, toys, toys. It will be interesting, but first things first. We hope to get discharged Thursday. Our clinic appt is at 3pm. We will know more then. Our plan tomorrow is to get back to the Zoo. It has been overcast the last three days, so hopefully it won't rain on us. Who cares if it does, as long as we get out of this room!!!!

Tuesday, September 6, 2005 9:17 AM CDT

Ooops...It happened again. Janna went to sleep about 9:15 and Malina was wide awake in our room. I was in her bed snuggling until after 10pm and she still wasn't asleep. Janna had her lab draw yesterday morning. WE had to go to the other lab and take our chances on someone new. We had the same guy we had the other time we had to go to this lab. He did have a butterfly need and did it on the first try!! Janna took another early nap yesterday so Malina and I went walking around the buildings. We couldn't go outside as it was sprinkling. We ate lunch together in the cafeteria and then did her favorite thing...ride the escaltors up and down, over and over again. When Janna woke up, Malina was ready for her nap. After Malina woke up, we went to Borders for about an hour and bought them some new books. We ordered food from the Olive Garden and went back to the room to eat it. Eating at a restaurant is too much right now. Malina and Janna are playing well. They have their moments when they each say "mine" and run to their corners, but that it to be expected. Malina is still taking her medicine for her ear infection. We didn't hear anything from the transplant team last night. I don't know what her lab results were. I am going to get the results from the lab today and then ask the team what the plans are. I assume they are happy with her lab results. It is really overcast today. We wanted to get back to the Zoo again, but we may have to wait another day. We are so glad Dad and Malina are staying with us this week...even if we don't get to go home Thursday...but I hope we will!

Monday, September 5, 2005 8:38 AM CDT

Oops, I missed posting last night, but I had a good reason. Janna went to sleep about 9:20. When I went into our room, where Malina sleeps, she was still awake. She wanted me to sleep in her bed. How could I resist. I thought she would be asleep in no time. Well, an hour later and she was still awake. She took a late nap yesterday afternoon. So, after crawling out of her bed, it was just too warm and cozy not to crawl into my own bed...and it was before 10:30pm!! What a miracle for me!
Janna got up at 6:30 yesterday morning, so she was reasy for an early nap about 11. Malina and I went to Target and the grocery store while she was sleeping. We ate a picnic lunch of fried chicken and watermelon--a favorite of Scott's and the girls. After waiting for Malina to take a nap yesterday, which didn't happen until 4:30pm, we decided to go to the nearest mall. By the time we got there, they were closing in an hour. We walked around. We then went to eat at Applebee's...in the restaurant. I was so nervous about germs and all. We survived it, but I can't say it was a relaxing dinner by any means. We got some ice cream on the way home as a treat. Malina is having on trouble sleeping in the twin bed, although Janna hates it that "sissy" isn't in her room at night. Scott and Malina have decided to stay. Scott had already taken Tuesday off because of the Boeing strike, so it didn't make sense to go back and work Wed & Thurs and go back Thursday night to hopefully take us home. So, we are going to treat this time as a vacation and try to get out every day. Today we are going to try to get to Borders and buy some new books!

Saturday, September 3, 2005 10:02 PM CDT

Malina was asleep before Janna last night and again tonight. Janna didn't surrender until almost 10pm again. Of course, they both had a late nap from 3-5. I did take Janna for a lab draw this morning. I just had to know that her FK level wasn't declining. Our favorite lady was not there, but the new lady did just need one stick. The girls played and Malina got her fill of The Wiggles and other cartoons. We went to the Omaha Zoo about 10:30 for a couple of hours, along with half of Omaha. It was crowded. They have a really nice Zoo. We hope to make it back to see more of it. Of course, we will be coming back to Omaha at least annually in the summer for Janna's check up. I called the nurse line at 7pm to find out about the lab draw. Normally I can get a copy in the lab, but on Saturdays they close at 11am. She said her FK level went down to 9 (they wanted it to be between 10-15) but they want to watch it and draw again on Monday. This means that if her liver enzymes do not climb, they will leave her at this level. I don't like it that it has take this big of a decline in such a short time. I certainly don't want a rejection episode because of this. Oh well, the docs know best. This evening we ordered some pizza and ate it in the cafeteria. We went walking and to visit the waterfall and throw more pennies and then it was time for Janna's medicine and bath. Scott read to both of them on the couch. Janna was busy collecting her three binkies for bedtime...one in her mouth and one in each hand. It doesn't look like we will get rid of them any time soon!! Scott even put Janna to sleep!

Friday, September 2, 2005 9:43 PM CDT

Janna had a great night! Other than going to bed about 9:45, which is later than she used to and getting up for about 5 minutes at 1:30, she slept until 8:10!! Yipee, but not like I think it will happen again! She was not in a good mood this morning. She usually wants to help with the laundry, but today she didn't. Malina and Scott arrived about 4pm. Malina was asleep for about the last 30 minutes or so, so SCott had to wake her. She made it all the way with no accidents. Scott said she was so good and kept herself occupied. She was so excited to see Janna. She just kept petting Janna's face. When she hopped out the car, she asked it Janna had a new liver. It was so cute! Malina couldn't wait to see our room. After the bags were in the room, Malina and Janna rode on the cart as Dad took it back to the first floor. Malina was looking through all the stuff Janna had in the room and Janna was looking through all the bags to see what they brought along. We ended up eating in the cafeteria since it was so late when they got here. We did venture out for a ride in the car and some ice cream at DQ. What a treat! Malina was in the room for only an hour when there was a call from the front desk asking if there was an emergency...Malina had pulled the emergency pull in the bedroom. Here we go!! There was no call from the transplant nurse about the schedule for labs next week. I am concerned that her prograf level came back at 10.5. The last time it was 10.5 they increased the dose. I called the after care line and the only thing she could tell me (it wasn't one of the two transplant nurses we deal with) was to take Janna to labs on MOnday and then we would find out Tuesday what the plan is. Well, I may take her tomorrow morning for labs since the lady that is so good at drawing her blood will be there tomorrow and not again until Tuesday. On Monday, we would have to go to the adult lab and they don't have the small butterfly needles to use on kids. I will sleep on it, but I think I want to know if her prograf level is dropping and it needs to be increased. If all is okay, then we can skip labs until Tuesday.
You have to know that as I am typing this, everyone is asleep. I have a towel over my head and across the top of the computer screen so that the glare doesn't wake anyone up. Scott is asleep on the bed behind me and Malina on the bed across from him. I just had to keep everyone posted!! I can't miss a day of posting here...and who goes to bed before 11pm anyway! We hope to go to the Zoo tomorrow. It will be a treat to get out of here. Janna has meds at 8am and 8pm and that's it!!

Thursday, September 1, 2005 9:29 PM CDT

BOO HOO! Now you know the answer to being released this weekend. They are being super cautious because they had just released a boy last week, under one year old, at the four week mark, and he was admitted less than 24 hours later with thrombosis and they almost lost him. He is still in ICU. They know if we are released and had to go to the local emergency room, they would not know what to do. That is so true...we have been there already. So, we are here until Clinic next Thursday. As long as all is well with Janna's labs, we will be released. Her labs are really good again today. Her prograf level dropped, but I hope we won't have to go up on the medicine again. I will find out tomorrow if Janna only has a lab draw once a week beginning next week. That would be great! If they want to check her prograf level again, and they probably will since it is on the outer edge of the low side, she will stay at twice a week lab draws.

She had another up and down night. She was up from 1-1:30, slept 15 minutes and was up again for half an hour and then again at 4:15...I surrendered again and she slept with me. She was up in time for her lab draw. She didn't cry until it took two times to get some blood. She took an early nap today, which I am so glad she did. Her Clinic appt was at 2:20. We didn't get into the exam room until 3:15 and weren't out of there until 4:15. Janna had had enough by the time we were out of there. She gets to stop taking the Prilosec and Calcium and starts on Magnesium once a day. She is staying on the Lasix (diuretic) and blood pressure medicine. The doctor thinks she is still hypertensive due to the high level of prograf. She thinks once the level is lowered (3-6 months) her pressures will be normal again. We were so disappointed when she told us we would not be released. I understand why. I don't want anything to happen to Janna....so here we are.

The good news is that Scott and Malina will be here TOMORROW! Malina had awful day at preschool. She was crying again and running to Scott. Her teacher had to hold her back. Scott called from the parking lot. He wanted to go back in and get her and go home. He resisted and went on to work. He called about an hour later and she was doing fine. The teacher sent a nice note home about having her in class. I asked the doctor about Malina and her being in school/daycare for the first time and what her opinion was. She said that she would recommend keeping Malina out of school until Janna is completely off the steroids, which would be about six months. She said Malina will bring everything home and Janna will get it. Plus, the added fact that fall/winter is coming and that is when most kids get sick anyway. At this point, I don't think Malina will be disappointed about not going back to school. Maybe she will forget about it by Spring.
We had to give the school two weeks notice of disenrolling her, so Scott gave them notice today. We will see how the weekend goes, but Malina may stay with Janna and I next week. If Janna only has one lab draw and one clinic appt, that will be no different than home and I will have to get used to that again. That would be better than hearing about how miserable she is at school. I told Scott to take the whole week off and let's just treat it as a vacation and to stay here with us...we will have to wait and see. I told him it makes no sense to drive home on Monday and drive back on Friday. It is a 5 1/2 hour drive. I'm counting the hours until they get here!

Wednesday, August 31, 2005 10:26 PM CDT

Janna had a much better night...although she didn't go to bed until 10pm, which is about 1 1/2 hours later than normal. She only got up at 1:30 and drank a bottle of milk and again at 6am. I put her in bed with me and she slept until 8:15am. She has found all of my hiding places for her binkies (we have eight of them). So, I have to come up with new hiding places that I can remember. At home, she only used them when she was sleeping. Now she wants them all the time. She is teething some. She has at least two new teeth since we have been here. We had another uneventful day, which is a good thing. Her blood pressure was 104/75, which is about the same as yesterday. She was running around before it was taken and was teasing the nurse by coming to the door and then running away again and again. She took another late 2 1/2 hour nap, which, of course, means that she didn't go to sleep early again tonight--it was 9:50pm. Her incision looks good and her belly smaller. She has a lab draw in the morning and then her Clinic appt at 2:20pm. We hope it is all good news.

Scott and Malina are coming on Friday instead of Saturday!! Yipee!! The Machinists are threatening to strike and getting into work when they are striking is not a good idea. It takes hours and sometimes there is damage to your car. So, they might as well come spend some time in Omaha with us! Malina is feeling much better, although she did not want to go to school today. She was crying before they ever left home and did not stop crying as Scott was leaving. He said it was horrible. They gave her a special star of bravery in order to get her to stop crying after he left--poor girl. They went to the Eichhorns for dinner and had a good time.

Tuesday, August 30, 2005 9:47 PM CDT

Well, if Janna were playing baseball, she would be OUT, but instead she won! She was up at 1,2,3 and I surrendered and brought her to bed with me. She woke up about 8:15 to a dose of her anti-rejection medicine. There were no lab draws today and none tomorrow, only a blood pressure check!! Two days of relief again!! We even stayed in our PJs until about 10 this morning just to celebrate! She is getting quite good at coloring, but sometimes not just on the colorbooks...good thing they are washable crayons! We did our usual inside and outside walking paths and checked out the Halloween decorations in both of the gift shops. Her last steri strips came off today. I think her stomach is the smallest I have seen it yet. I hope she gets to stop the diuretic, as it is hard on her kidneys. She took a much needed 2 1/2 hour nap, but that meant that she didn't go to sleep tonight until about 10! We hope for another quiet day tomorrow.
Poor Malina is having quite a time. She has to have her breathing treatments every four hours until her cough is gone. Well, this morning she woke up and told Scott her left ear was hurting. So, Scott had to take her to the doctor later in the day and sure enough, her left ear was inflamed. They checked it the day before when they were at the doctor and there was nothing. So, add another med for Malina and some ear drops for the pain. I think she is taking almost the same number of meds as Janna. I hope she gets to feeling better soon. I can't wait to see her. She is talking more and more on the phone these days. She even talked to Janna today. Janna was smiling from ear to ear when she heard Malina's voice. It will be a sweet reunion this weekend.

Monday, August 29, 2005 10:41 PM CDT

Another Janna night...up and down. She was up in plenty of time to get to the lab by 7:30am. She didn't even cry during the lab draw. I think she is getting used to the same lady. We just wait for her no matter how long it takes. The transplant nurse called this afternoon to say that her labs are rock solid again. She will call tomorrow to tell us if we have labs on Wed or Thurs. Janna's blood pressure was much better today, 96/55. We will have it taken again Tues & Wed before Clinic on Thursday. Janna was wild and wooly today. She did not take her nap until 2:30 and then slept until 5. She is usually napping around lunch time. I don't know what was going on today. She was too busy coloring and playing to take a nap. For the first time since we have been here, we had red meat (yuk) for dinner. We had some pepper steak in the cafeteria and it was actually pretty good. Janna ate every piece I gave her...hmmm maybe she likes it more than I do!! She is eating really well again, except for breakfast, but that was always the fight at home as well. After having her bottle at 8:30 tonight, she finally gave up and went to sleep at 10pm...that is really late for her. I'm afraid to think of what kind of night she will have. Oh well, what else do I have to do...and who needs sleep!

Malina had some breathing treatments last night and it really helped with her coughing. Scott took her to the doctor today and they think it might be asthma induced by her cold. They don't want to label her as having as asthma since it may be an infection of the bronchial tubes/airway. Her chest x-ray was clear. She has to have breathing treatments for three days to help clear it up. SCott is going to send her to school with an inhaler to treat it while he is at work. Hopefully it will clear up soon. She sounded like her ornery self again today. I'm so relieved she is feeling better...and so is Dad!

Sunday, August 28, 2005 8:34 PM CDT

I'm not going to mention how Janna's night went. I think she was really hungry through the night. I let her sleep this morning until 8:45 and had to wake her for her anti-rejection meds. I don't think I will wait that long again. It made me rather nervous to give it to her 45 minutes late, although we have an hour window to give it to her. It made all her other meds late too. She was resting so soundly, I just didn't want to wake her. Our highlight of the day was doing the laundry. Janna loves it because she gets to roam the hallway while I am in the laundry room. She likes to check out the cleaning lady's cart. He sat outside until it started to rain. We walked and walked. That's about it. Janna is starting to get tired of our walking path. We have one indoors because she can't be in the sun because of the increase incidence of skin cancer with her meds. We have one outside and walk it after dinner. We don't stray too far from the hospital, as it is not in the nicest part of town. She has her lab draw tomorrow morning and her blood pressure check around noon.

Scott is playing nurse maid to Malina. She is still under the weather. Her cough is still uncontrolled. She coughed so much before dinner that she vomited. Scott called the nurse line and they think it is asthma induced by a cold. He gave her a breathing treatment this evening and it really helped her. He will miss work again tomorrow because he has to take her to the doctor. They want to see her. Poor Malina. She was so thrilled to sleep in her "big girl" bed for the first night, but she ended up sleeping upright on the cough with Scott to get some relief from the congestion and coughing. Why do these things happen when I am not there. Those who know Scott know how upset he gets when one of the girls are sick. They even tried to go to the Air Show today, but Malina just wasn't up to it. I hope she is better in the morning.

Saturday, August 27, 2005 9:19 PM CDT

I would have gotten eight hours of sleep, but not consecutive, had I not stayed up reading the last of the Harry Potter book...but it was worth it. I can't wait for the last one!
Janna was only up once from 3:45 to 4:30 and then slept until 7am. There was NO lab draw this morning, so it figures she woke up early! She had a good day. She took a late nap. I think she was excited that Uncle Steve and Aunt Natalie were going to visit. They didn't get here until about 4pm. We have enough time to get to the grocery store, order some food for take out and eat before it was Janna's bedtime and time for them to leave. It was sure good to have company. She took them on a walking tour and showed them the waterfall, the escaltors and the inside waterfall. She was quite the tour guide. She is talking really well now. She said "Goodbye Steve" and "Goodbye Natlie" before they left.
Malina spent part of the day at Grandma's. Scott was home putting together her "big girl" bed. She will be so excited when she gets home. I can't wait to hear all about it from her. She helped pick out the sheets and comforter a couple of months ago. I miss her so much! It will be three weeks tomorrow since I last saw her!!

Friday, August 26, 2005 10:28 PM CDT

Janna had another restless night. I guess I had better get used to it for a while. She was up at 10:30,2,3 and 6:15. She is still not eating a lot for breakfast. I am still using peanuts if she doesn't eat much. We are already through one can of honey roasted peanuts and one bag of elephant peanuts. Her blood pressure monitor was a bust today. She was really calm, but after two tries, it would not register from her arm. They tried her leg and it was 122/69. Again, they want the top number to be under 110. The transplant nurse said that once it cycles through once, you will not get an accurate reading. We will try again every day next week. I just don't want her taking any medicine she doesn't need. She took a three hour nap. I spent two hours of it reading Harry Potter. What a treat! She didn't even wake up when there was a knock at the door. They delivered a huge basket of balloons and cookies from Scott's co-workers. I sat it on the chair next to her bed. She should have heard all the "wowies" when she woke up and saw the balloons. She spent half an hour going through the basket. It was really cute. Her lunch wasn't too healthy today...a couple of cookies with peanut butter. The transplant nurse called and said that her labs were excellent...so NO lab draws until Monday!! All her liver numbers are in the normal range, except one and it is only 5 points out. Her prograf dose has not changed in almost a week. That is another good sign. We hope for an uneventful weekend. We are looking forward to a visit from Uncle Steve and Aunt Natalie tomorrow!!

Thursday, August 25, 2005 9:04 PM CDT

Janna woke up at 7:55 just in time for her Prograf! I was worried I was going to have to wake her on her day off from a lab draw. Nothing fun to report about today. We walked around and looked at the Halloween decorations in the gift shops. Her Clinic appt. was not too eventful. She stays on all her current meds. They want to monitor her blood pressure. They want her top number to be lower than 110 and it was 117/59. So, we will go to the clinic to have her blood pressure taken every day until her next clinic appt next Thursday. The dr. is keeping her on the Lasix (diuretic). There is still some ascites. Other than that, they are really happy with her progress. They did say that no one leaves Omaha in less than four weeks post-op. It will be three weeks on Monday. We did see one of the transplant surgeons in the hall on the way to the appt. He said that Janna was second in line for this liver. She got it because the boy first in line in New Jersey was too sick to undergo a transplant operation. He was so happy she was doing so well. Let's pray it stays that way. If her labs are good tomorrow (they didn't get enough blood on Wed for her Prograf level), then she will have no draws this weekend. Then if her labs are good on Monday, she may get to skip Tues and Wed and go to two times a week. She is making progress. For those that are dying to know...she got up at 12:30 for a few minutes and then again at 4:15 until 5:00. She drank a bottle and went back to sleep. It wasn't too bad of a night.
Miss Malina is having a hard time at preschool/daycare. They have preschool in the morning and then lunch and a nap and then play, play, play. Some mornings she is ready to go and others, she begs Scott to stay home with her. Scott says when he picks her up, she comes running to him. I guess it is expected since she has never been in school and never been in daycare. I can't wait to see her and Scott too. They are coming to Omaha Labor Day weekend.

Wednesday, August 24, 2005 8:19 PM CDT

Janna had a rough night. She was up at 9pm, then 12:15 for a half hour and again at 5:30 for 45 minutes. The lab draw came early for her, as I had to wake her again. We ask for the same phlebotomist each time and wait for her. She knows Janna pretty well now. We had a rather uneventful day. Janna had no breathing treatments today. Her cough is about gone. She had a few gagging episodes, but it was related to her cold and congestion. At least it is getting out of her lungs. We walked more than normal today just to get out of the room. The walls are starting to close in. Janna wants out all the time. The problem is she wants to walk everywhere and during the day there are people everywhere. The highlight of the day was that we walked to McDonalds--not my idea of food, but the only place within walking distance. It was about a mile away up a steep hill, but we made it. Janna was all smiles with her french fries and more so, just getting out of Lied. She ate my chicken instead of her McNuggets. They even gave her a mini ice cream cone. She really liked that. She was not happy when it was time to leave. We hope to get some good news tomorrow at her Clinic appt. I hope she gets rid of some of her medicine and they give us a timetable of what their plan is. NO lab draw tomorrow...but I will still have to give her the prograf by 8am. I don't think I will be that lucky. My plan is to read the latest Harry Potter book tonight...until I fall asleep.

Tuesday, August 23, 2005 8:23 PM CDT

Janna slept much better last night. She got up at 10:30 and drank some more milk and went right back to sleep. Then she slept until 3, had some more milk and was up until 3:45. Then she slept until 7...in her own bed!! I was thankful for more than two hours of uninterrupted sleep, but tonight be will different I am sure. It figures that she would get up at 7am when we didn't have a lab draw. I have had to wake her every morning to go to the lab. She has another lab draw in the morning at 7:30, or rather we go and wait hoping to be seen by 8. We waited in the exam room an hour to get her staples removed. She was so good until the last two minutes of waiting. She ate some honey grahams, Goldfish crackers and was eating some honey roasted peanuts, yes peanuts again she was waiting. She was giving me some. I asked for another and she said "no". I reached into the bag and took one and she started wailing and I mean wailing. Of course, the nurse walked in at that moment. She is the same nurse that we have seen most every day while Janna was inpatient. She is tied to the transplant team. I held her in my lap. She whined some, but did great. She put some steri-strips over the incision, although she said it looked good and didn't need any. Her cough/cold/congestion is better today. She had only one nebulizer treatment. She is now holding the tube up to her mouth and thinks it is quite fun, much improved from the first few wailing episodes. After our walk this evening, we walked into the Lied Center and heard music, which Janna loves. We went to the entry and a grandmother was playing the dulcimer and her 8 yr old grandson a guitar. We sat and listened. She even joined in when they gave her a plastic egg filled with sand to shake. Everyone got a kick out of her. I have to admit she was sure smiling a lot and thoroughly enjoyed it until the meltdown when it was time to come to the room for her medicine and bedtime. She is even to the point that she will say "hello" to people we are passing in the hallways. We hope the lab results stay on the good side and the liver stays "happy". We are getting tired of this place already and miss our home, Dad, Malina, Grandma, family, cousins and friends. Everytime I hear the helicopter, I get a lump in my throat just thinking about Janna, her donor family and all our family and the donor family have been through.

Monday, August 22, 2005 8:26 PM CDT

Janna didn't sleep well last night either. She was up at 1,2,3 (up for an hour),4 and then I had to wake her for the lab draw at 7:30. The morning didn't start off so well either. We sat in the lab for 45 minutes waiting our turn. It was a long wait. They only had two phlebotomists and there were 12 people ahead of us at 7:35. By the time we got to our room, her prograf was 35 minutes late. Then, after 5 of her meds, Janna threw up. Since it had only been 10 minutes, I had to give her the prograf (immunosuppressant) again. I called the transplant nurse to see what other meds I had to give her again. That call took two hours for an answer. She had to have her steroid again. I think that is what made her throw up. I always give her the steroid with her breakfast, so I won't try it after her milk ever again. I am so glad the steroid dose will be cut in half tomorrow. She was fine after she threw up. She picked at her breakfast, but was in a good mood. She even took a two hour nap...and so did I! She played in the room and help with the laundry. Every time we go out the door she is all smiles and is talking all the while. However, she knows when we are heading back to the room and throws a fit. We walked outside after dinner tonight. It was nice and cool. The transplant nurse called about 5:30 and said her labs looked excellent, so NO lab draw tomorrow morning!! Hooray for Janna. Her arm gets a break. She will still have to get up for her 8am dose of prograf. That drug has to be given at 8am and 8pm to keep a level dose in her system to help prevent rejection of the liver. She gets her staples out tomorrow afternoon. I am glad because she is starting to itch them. Other than that, we are just hanging out, trying to make the time go by faster. We miss home, Dad and Malina.
Scott made it back to work today after being gone two weeks. Malina went to "real school" today and loved it. I can't wait to hear all about it.

Sunday, August 21, 2005 4:09 PM CDT

Janna is feeling much better. Even Grandma and Aunt Michelle got to see a smile or two! She is coughing less and it looks as if her nose is drying up. We are still using the nebulizer three times a day. She is still not sleeping well at night, but that is probably caused by the steroids and prograf. Her body will have to get used to the drug levels. Her steroids will be reduced to half on Tuesday so maybe that will help as well. She had her blood drawn both Sat & Sun, but she goes to M-W-F this week!! Her arms could use a break. Her prograf level was raised again Sat evening. It was hard to see Grandma and Aunt Michelle leave about noon, but as we opened the door, David, Judy and Deena were about to knock. It was good to see them. Janna was glad to have someone her size to play with. They stayed about an hour and then it was past due for Janna's nap. We are missing Dad and Malina and hope to be home soon! Tomorrow is Malina's first day of "real school". I wish I could be there, but she will only be in all day until Janna and I are home. That way Dad can drop her off on the way to work and pick her up on the way home. Then she will go back to the preschool schedule of three mornings a week. Well, I had better go as Janna wants to play!

Friday, August 19, 2005 4:40 PM CDT

We are back in our "home" at the Lied Transplant Center. Janna was discharged about 3pm after much waiting. She had the most horible night. I think she might have had 4-5 hours of sleep at the most. Her big toe was hooked to a oxygen monitor, so anytime she would yawn and it would go below 90n alarm would sound. Then any time her heartbeat was above 170, the alarm would sound...and it did several times. She was so anxious about any one coming into the room. To start things off, we had to wait three hours for a bed. We arrived about 5:30, but there were no doctor's orders on the floor. The resident didn't see Janna until 7:30 after two calls were made. He did not even touch Janna, listen to her or anything. He would not give her anything for cough. He was no help at all. I had him paged again about 10pm because Janna's breathing was so labored, he showed up about 11:40 and again would do nothing. She had to suffer all night long. Her heart was racing in the 160's most of the night. I was so glad for morning. The nurse practitioner came in and told the others just where he knew to look for the orders. Janna should have had a breathing treatment last night to help her out. So, about 11am, she had her first breathing treatment. It really helped her. The chest x-ray was negative. I was so worried all night they were going to find something. The Gi doctor didn't get to us in rounds until noon. She wanted us to stay another night. I told her how Janna doesn't do well in the hospital and the tx nurse agreed. They think she has some type of respiratory virus--probably from staying on the floor after PICU!! They did some swabs and will run some cultures. We were sent "home" with a nebulizer to use three times a day and then as needed and Benadryl twice a day. She said that her throat was really raw, but everything else looked okay. She does have some crackling in her lungs, so I have to keep her active this weekend. That will be an easy one as long as we stay out of the hospital. The really good news is that her liver is still happy. The liver enzymes are staying steady. Here I was telling Janna all week that she would have Sat and Sun off for lab draws because I thought the labs would be closed...wrong! She will have labs draws this weekend and then start Mon-Wed-Fri next week. At least she will get some relief. We are so excited....Grandma and Aunt Michelle are coming to visit tomorrow! I know Janna will be glad to see her buddy Grandma and Aunt Michelle. Also, David, Judy and Deena are going to stop by on Sunday on their way home from Chicago. It will be nice to have some company. I am hoping for a peaceful weekend.

Thursday, August 18, 2005 3:54 PM CDT

Well, add to Janna's runny nose and congestion a horrible cough. She had her first clinic appt in the Transplant Clinic at 2:20. After she was weighed, measured, BP and temp, the dr. was only in the room for maybe a minute before he wanted to have her admitted for overnight observation. We are in our "home" room waiting for a bed in the hospital. They are going to move kids around so that we have a private room since she has a cold. We also went down and had a chest x-ray. I am sure they are checking for pneumonia, collapsed lung and fluid in the lung. She was breathing pretty hard when we were in clinc, along with crying inconsolably. She just knew she was going to get a boo-boo. She is resting comfortably now asleep. I hope they don't call until she wakes up. She was restless last night and was up for about an hour and got up an hour early this morning. Plus, her morning nap was interrupted by the plumber who came to fix the hot water dispenser. She has had a rough day. Her liver numbers are still good, so hopefully it is just a cold and nothing liver related. It is better to be safe at this point. I will post when I know more. Please keep Janna in your prayers. Each day can bring new challenges.

Wednesday, August 17, 2005 9:17 PM CDT

Janna had a horrible night. She started getting congested and woke up several times. I finally gave in and let her sleep with us at 5. The lab draw went much better this morning, but I had to wake Janna at 7:30 to get there on time. There were 12 people ahead of us, so we weren't out of there until 8am. The transplant nurse called to say that we will have to draw labs in the morning. Her immunosuppressant level is in the "good" zone, but they want to make sure that it doesn't go too high with the higher dose. I was hoping her arms would get a break, but we will do what we have to do...poor Janna. Her wrists and both arms are so black and blue. The important thing is that her new liver is happy and we want it to stay that way. Her white count is back down, so hopefully it is just a reflection of her current cold. For entertainment before dinner, we rode the glass elevator 5-6 times and she still cried when we quit! Scott left about 10am. Without his navigator (ME), he missed his turn south and went an hour out of his way. Now remember, he is tired and has a lot on his mind, but I will always say to him, "you're a pilot and NOT a navigator" and boy is that true! Janna has clinic in the afternoon. She will be seen by the GI team and transplant team and be evaluated, poke and prodded. I hope she has a good report and she gets rid of some of the meds.

I am sure Grandma will miss her bed partner, Malina, after nine nights!! Thank you for taking such good care of her. I am sure she will miss you....and the pop, potato chips, all the cousins to play with every day and no rules at Grandma's house! I am sure she will tell us all about her adventures at the farm. What would we do without you...

In other news, the hot water dispenser decided to leak under the sink and onto the carpet through the night. The plumber came just when Janna went to sleep for her morning nap. Then I noticed that the refrigerator wasn't that cold and the freezer wasn't keeping the food frozen. So, maintenance came again with a new refrigerator. This time Janna had a show during her lunch. The problem was that the new one wouldn't fit in the hole. There were two alternatives. One was to move rooms...no way, Scott just left. The other is to leave the refrigerator in front of the hole and use it as a countertop until a carpenter can come in and cut the hole bigger....hopefully we are home by then! Janna liked having visitors. She just wants to get out of the room all the time now. The problem with that is that the immunosuppressant and one other drug make her sun sensitive and a risk for cancer. So, she will have to wear sunscreen and be extra careful in the sun.

Tuesday, August 16, 2005 6:44 PM CDT

It was sure nice to sleep in PJs again, in a bed and have very little noise. Janna was asleep by 8:15 last night. She was worn out. She woke up about 9pm, but went right back to sleep and slept all night until 8am. That was sure nice of her. I got more than two consecutive hours of sleep!! She had to have a lab draw this morning by 8am and will have every morning until the weekend--no lab draw on Sat or Sun!! Then next week, only Mon,Wed,Fri, but things can change, but that is the plan now. They are checking all her liver numbers and most importantly, the level of the immunosuppressant in her system. The lab draw this morning was awful. We went to one lab, she was stuck twice and no luck. They sent us to another lab (in the same hospital) and it took two tries and holding her down on the table to get an adequate draw. The nurse called to say that her liver numbers are still trending downward. There is one value still in the high range, but all others are in the normal range. She called again at 5pm to say that her Prograf level (immunosuppressant) is too low and to up the dose until they call again. Also, her white blood count went from 8 to 17, so she is trying to fight off something. She has a runny nose and that could be it. We have to watch for a fever or any other changes in her. They only call after a lab draw if there is something to be changed. Hopefully, tomorrow's lab draw won't be so bad and that her runny nose does not progress to somthing more. Scott is getting ready to leave in the morning. We will miss him. Janna is back to her happy self. I can't see that the incision has slowed her down any at all, which is a good thing. The staples come out next Tuesday. One day at time.....but life is good right now! Thank you and prayers for her angel donor.

Monday, August 15, 2005 12:51 AM CDT

Six and one half days from surgery....and Jannas is DISCHARGED from the hospital!! We will be moving to our home away from home this afternoon. It is all connected to the hospital. We don't know for how long. It will depend on how Janna does with the medicine. We have to meet with the transplant coordinator and pharmacist before we leave. She will still be on the schedule for a blood draw every day for a while. It sure would have been nice to have a central line so that she could have avoided all the lab draws and heel sticks for the blood sugar monitoring. Today was her last day of the high dose steroids, so we are hoping that her blood sugar problems are a thing of the past and no more insulin. They are going to keep her on some blood pressure medicine for a few days. She was so anxious about the blood pressure cuff that they did not get a good read for a couple of days now. The liver enzymes are still trending downward. A few are in the normal range. We will be leaving the hospital with less medicine that when we came and some are short term. Yipee!! Scott will be coming home on Wednesday to get back in his routine and get Malina ready for "real school" on Monday. Yes, he will be playing Mr. Mom until we are home. If only we had a hidden video in the house! We are so thankful that Janna has come this far. We are not out of the woods by any means and she won't be for some time, but we are past the surgery complications. Thank you for all your continued prayers.

UPDATE: We made it to our home in the Lied Center. We picked up all her meds and are trying to get things organized and do some laundry. Janna is loving the fact that she can roam around unrestricted.

Sunday, August 14, 2005 9:27 AM CDT

We did get moved to the pediatric floor about 4pm Saturday, however, it was a big disappointment. We are in a semi-private room. There is very little space for Janna to get down and walk around without disturbing the other patient. The other patient is a three year old. She is still on an IV and suction machine so there were machines going off all night long. We are waiting to see the surgeon today to see if we can move to COOP care just so that we can be in a private room. Janna is feeling much better, eating more every day and walking much better. She still doesn't like the blood pressure checks (we are going on #5 try after I leave this station) and the temp checks. She cries less for her blood draws. I hope it will be a quiet and uneventful day. We can spend time in our other room at the Lied Center, but there is no bed for Janna. We need to do some laundry today too. I hope all is well with all of you. I updated our room and phone number below.

Sunday, August 14, 2005 9:25 AM CDT

We did get moved to the floor about 4pm Saturday, however, it was a big disappointment. We are in a semi-private room. There is very little space for Janna to get down and walk around without disturbing the other patient. The patient is a three year old. She is still on an IV and suction machine so there were machines going off all night long. We are waiting to see the surgeon today to see if we can move to COOP care just so that we can be in a private room. Janna is feeling much better, eating more every day and walking much better. She still doesn't like the blood pressure checks (we are going on #5 try after I leave this station) and the temp checks. She cries less for her blood draws. She is not so puffy anymore and looks like our sweet girl again. I hope it will be a quiet and uneventful day. We can spend time in our other room at the Lied Center, but there is no bed for Janna. We need to do some laundry today too. I hope all is well with all of you. I updated our room and phone number below.

Saturday, August 13, 2005 1:50 PM CDT

Janna had a good night. She slept most of the time in one of our arms, but at least we got some sleep. Her blood sugar has stayed in the normal range. She has needed only one dose of pain med today. She has gotten down and walked around. She is really weak, so we have to be right there. She has played on the floor and is pretty much herself today. The incision doesn't seem to bother her. They are still giving her Lasix at 9am/9pm to drain more of the fluid. She has had some big diapers, which is a good sign. She is not eating like she was before surgery, but when she finds a favorite food, she asks for more. Her current favorite is peanuts, so at least it is a healthy food. The really good news is that the surgeon came in at 6:30am and said that we are released out of ICU to the regular pediatric floor. As soon as they have a bed for us, we will move. We will be glad to get out of PICU as it is very noisy and bright...and it means that Janna is progressing! We hope for more good news!

Friday, August 12, 2005 10:04 PM CDT

Well, Miss Janna is back. She started getting better once she started losing some of the fluid she had been retaining. Without the diuretic, she started having massive diapers, like 14 oz and that doesn't count what was on Scott or I. Yes, we both had wet pants today along with her. They are treating her fluid retention with Lasix twice a day. We don't know for how long, but it is working. Janna went without pain medication from 6am until 8pm tonight. They did change it to Lortab. We hope she won't have the tremors and wake up so startled. She is now off all the leads, so she can get down and walk around again. She will only need the IV line for her IV steroids and Lasik through Monday. After Monday, I don't think she will need it at all. The problem with that is that we are down to one line in her elbow. I sure hope it lasts until Monday. She didn't feel like getting down and walking this evening, but now that it is bedtime and she feels much better, she wants down. Her blood sugar was up again this afternoon and she had another shot of insulin. We gave her a bath and tried to remove all of the tape adhesive. It will take a while. So all she has is two IV locks in the same arm. She was even smiling this evening watching her Baby Einstein. We are still dealing with life without the binkie. She isn't even asking for it anymore, so maybe we will throw them out the window when we leave Omaha. Word is that we may move out of ICU tomorrow, however, the regular ped floor is full, so we may stay in the ICU room, but be on regular room status. We will believe that when it happens. The transplant team is really happy with her progress. We are so glad she feels much better and is starting to talk and be herself again. We have to keep remembering that she is only four days out of surgery. That seems hard to believe. Please pray for a little one year old who had a liver transplant early this morning. We hope to meet her tomorrow. Keep the prayers coming... are working. Well, I had better go. I can hear Janna playing the piano in her room instead of being rocked to sleep by Dad.

Friday, August 12, 2005 9:43 AM CDT

Whew what a night! It all started with leaking around the JP drain in her incision about 2pm. When the dressing was changed about 5pm, it was noticed that the tubing was pulled out more than it should have been. We had to wait for the resident since it was after 5pm. She ate some food and did well. She also had some "milky". About 10, we still had not seen the resident and was told that they were in surgery. Janna started running an elevated temp, but not a fever. Then her heart rate starting racing as high as in teh 180's. It should be close to 100. Her blood sugar was high again, so high, she had to have insulin injected in her thigh instead of through the IV. We waited and waited and still no word on the JP drain. By this time, it was obvious Janna was taking on fluids. She was miserable. She was moaning and grunting and could hardly sleep. The pain med started giving her tremors. She would wake up out of a deep sleep so startled, arms splayed. It was horrible. Scott or I held her all night. About 2am, we saw the resident. What a waste of time. He could do nothing. At 4am, the nurse called a dr. during surgery and was authorized to remove the JP drain. Janna's belly was even bigger. She was started on blood pressure medicine as well. It keeps it down, but not for long. Her labs were better this morning. There is only one liver enzyme that increased instead of lowering. We saw the nurse practitioner this morning. She told us that none of this is critical, but common side effects of the transplant. They are reducing her IV flow to help with the fluid retention. If that doesn't do it, they will start some diuretics. They are changing her pain med too. Her blood sugar was normal this morning and I hope it stays that way. Janna doesn't like the heel sticks too much. This has been two long exhausting days for us. We hope that Janna will start feeling better soon. She is like a rag doll and so lifeless. She didn't even want an Oreo cookie. Please keep Janna in your prayers. We hope to get more answers and plan of action after we see a DOCTOR. Amazing that we are in a hospital and can't seem to see a doctor to see our Janna. We don't like seeing her this way.

Thursday, August 11, 2005 1:06 PM CDT

Well, it has been a long day already. Janna slept in my arms most of the night. She is not herself today. At midnight one of her IV lines quit working. This was the line that they were using to draw her blood. This means she will now have to be stuck each time they need a lab. Her blood sugar has been fine until noon today. It was back up to 190, so more insulin. They think it is directly related to her IV steroids, which will stop on Monday. Dr. Sudan wants to keep the JP drain in today, but she can start on food. She had 8 oz of milk about noon and drained the bottle. She can start food when she wakes up. Her labs are a mixed lot today. Some of the liver enzymes are still coming down and two have quadrupled. She is noticeably yellow today. The doctor is not concerned, but WE are. Janna is really weak and doesn't even want to hold up her head up today. She is not talking much. We want our bubbly baby back. We feel like today is a setback. She just wants to be held. We have to stop the binkie as she has developed sores on the bottom of her bottom lip and two sores on her chin from sucking so hard.....wish us luck with that one! That has been her main source of comfort, but maybe eating food will distract her enough today. We miss our Malina girl. We love you. We hope you are being good for Grandma.

Wednesday, August 10, 2005 9:00 PM CDT

Well, we are 48 hours post surgery. It seems hard to believe when you look at her. She really looks good. We noticed today that the red veins on her face are gone already. She was sitting up in our lap a lot today and so this evening she is really restless and in some pain. I think she was too active, plus the steroids have really puffed her up. She is really round. She finally got to eat some ice chips about 4pm. You would have thought it was a steak! After that, she ate almost all of a popsicle. We had to wait another 4 hours before they removed the NG tube in her nose. So, the only remaining tube is the JP drain in her incision. It is not draining much, so it should be removed in the morning after we see Dr. Sudan. Other than that, she has 3 IV sites (one for her IV, one for blood draws and blood gas measurements and one for back-up). Hopefully she will get to start eating food and drinking milk tomorrow. It will be a slow process since she is so bloated from the steroids, but the steroids should make her hungry too. She is on six meds right now so we have to adjust to giving them to her by mouth. The problem with that is that her throat is still sore from the ventilator tube and NG tube....and I don't think any of them are flavored meds either. This afternoon she found the staples on her incision, so we have to try to watch for her trying to pull them out or twist them! We feel so fortunate with her progress. We hope that she continues to do well. Please continue to pray for Janna and her donor family.

Wednesday, August 10, 2005 1:11 PM CDT

Okay, I am typing this for the second time. I was on the last word or two and lost it all!! Janna was more alert and awake during the night. She wanted me to hold her from 1:30-4am, so we snuggled--so she got some good sleep, but I didn't. Her blood sugar has been normal since midnight! That's good news. Her liver numbers are still trending down, but not in the normal range. She was asleep in her bed in deep sleep until 6am when it was time for her chest x-ray. When I went to her bed, she had rolled onto her belly! I guess her incision doesn't seem to bother her that much! She went back to sleep until 8:30 until it was time for her morning meds. Then it was "hold me" time again. She did take 1/2 of the meds by mouth, which is good. Her NG tube is not suctioning much out anymore. Her JP drain has half as much as yesterday. She had a visit from the "Cat in the Hat" this morning. She wasn't as impressed as Malina would have been. She is alert, talking, watching her Einstein movies and reading her "bookies"...and of course, wanting some "milky". We are seeing a lot more of those big brown eyes!

Dr. Sudan was in late this morning and said that as long as she tolerates, i.e. no vomiting, her NG tube (into her stomach) being shut off for four hours, she can have water only today after 4pm. She might progress to soft foods tomorrow. Her JP drain (in her incision) will probably come out tomorrow. The team is not worried about her portal vein and she didn't have an ultrasound this morning. She will have an echocardiogram to rule out fluid around her heart. Hopefully it was just a bad x-ray this morning. Please keep Janna in the donor family in your prayers.

PS...Miss Malina, Daddy sure is worried that you will want to be a farm girl when he returns. We love you and hope you are having fun on the farm and playing with your cousins!!

1pm update: Preliminary news is that there is no fluid around her heart!! We will have a final report after the cardiologist has reviewed. We are so relieved.............

Wednesday, August 10, 2005 12:07 AM CDT

Okay, I am typing this for the second time. I was on the last word or two and lost it all!! Janna was more alert and awake during the night. She wanted me to hold her from 1:30-4am, so we snuggled--so she got some good sleep, but I didn't. Her blood sugar has been normal since midnight! That's good news. Her liver numbers are still trending down, but not in the normal range. She was asleep in her bed in deep sleep until 6am when it was time for her chest x-ray. When I went to her bed, she had rolled onto her belly! I guess her incision doesn't seem to bother her that much! She went back to sleep until 8:30 until it was time for her morning meds. Then it was "hold me" time again. She did take 1/2 of the meds by mouth, which is good. Her NG tube is not suctioning much out anymore. Her JP drain has half as much as yesterday. She had a visit from the "Cat in the Hat" this morning. She wasn't as impressed as Malina would have been. She is alert, talking, watching her Einstein movies and reading her "bookies"...and of course, wanting some "milky". We are seeing a lot more of those big brown eyes!

Dr. Sudan was in late this morning and said that as long as she tolerates, i.e. no vomiting, her NG tube (into her stomach) being shut off for four hours, she can have water only today after 4pm. She might progress to soft foods tomorrow. Her JP drain (in her incision) will probably come out tomorrow. The team is not worried about her portal vein and she didn't have an ultrasound this morning. She will have an echocardiogram to rule out fluid around her heart. Hopefully it was just a bad x-ray this morning. Please keep Janna in the donor family in your prayers.

PS...Miss Malina, Daddy sure is worried that you will want to be a farm girl when he returns. We love you and hope you are having fun on the farm and playing with your cousins!!

1pm update: Preliminary news is that there is NO fluid around her heart!! We will have a final report after the cardiologist has reviewed. We are so relieved.............

Tuesday, August 9, 2005 8:12 PM CDT

Janna had a restful day and is doing well. She is off all oxygen. She has had very little pain medication today. The central line was removed after lunch, along with the catheter. She slept through the whole procedure, which is amazing since she usually is pretty agitated when she is "messed" with. She was moved from a regular hospital bed to a crib since she is more active. She tried to roll over, but she really can't sleep on her belly until the JP drain (in her incision) is out. She looks really good, but is really grogy. Her lab draw from 6pm looks good, except her blood sugar is still high. They say it is a result of the IV steroids, which will be stopped tomorrow. She will then go to oral steroids. She wanted me to hold her, so I did for about 2 1/2 hours. Scott is holding her now. She is a real snugglebug. I don't know how she is going to sleep in her crib tonight...it may be a long night!! All she has left in is the NG tube which is draining fluid out of her stomach so she doesn't vomit, the JP drain (incision), her IV line and another IV line for blood draws. She is still hooked up to a heart monitor and oxygen level indicator and will be until we are out of PICU. Thank you again for all your thoughtful notes. I hope to post more good news tomorrow. Please keep the prayers coming...

Tuesday, August 9, 2005 11:25 AM CDT

Janna had a restful night. Of course, she was sedated and had IV pain meds. She had an elevated temp for about four hours late last night, but not high enough to be considered a fever. She did wake up a few times and coughed up some mucous and had to be suctioned. Her blood sugar was low by early morning and she had to have two doses of glucose. This is typical since she has had meds with dextrose in them. They had to restrain her wrists since she was trying to pull out the ventilator tube, but they are off now. Her liver labs are all lower, which is a great sign. Her bili is back in the normal range. They stopped her IV pain meds and sedatives about 6am. They wanted her to wake up before taking her off the ventilator. She has received one dose of her steroid and immunosuppressant this morning. She had an ultrasound this morning to look at the blood flow through the liver. She has one portion of the portal vein that shows some narrowing, but it is right where the donor liver was attached to it. They will continue to watch it. They took her off the ventilator about 10:45 this morning. She now has a nose canula with oxygen. They took the dressing off the incision. They will not put another one on, so we will have to look at it all the time. It is closed with staples. They will be taken out in about two weeks. Her old liver weighed over a pound and her new liver about half that. We still haven't seen a picture of it. Her central line (for IV meds) is bleeding and causing her pain. The surgeon said to remove the central line and just use one of her other lines. Janna will love that because right now she can't look straight ahead without pain. She seems to have little pain right now. She has asked to "get down" and "hold me". She also saw Scott take a drink of his coffee and wanted a drink. They are really happy with her progress at this time. They will continue to monitor her liver numbers throughout the day. We sure miss our Miss Malina and hope Grandma and all her cousins are taking godo care of her! These are still critical days. Thank you for all your support...and please continue to pray for Janna and the donor family.

Monday, August 8, 2005 9:05 PM CDT

Quite unbelievable, but at 7:45pm, the nurse called to say they were closing Janna up--3 1/2 hours later. We met with the surgeon at 8:15 and Janna was in her PICU room already. She said Janna did well throughout the surgery. The liver has good bile flow, which is a very good sign at this stage. They did find an obstruction of part of the small colon, but it was fixed and she saw no damage or restricted blood flow from it. Janna is sedated and will be throughout the night. She will be intubated throughout the night also. She is on a low level. She has a NG tube removing wastes from her stomach. She has an arterial line to measure the blood gases and two other lines that are not being used at this time. She has a central line with three hookups for the IV access. This line will stay in until we are discharged. She has one JP drain, which drains fluid from the incision and stomach. She is still catherized. HER STOMACH IS FLAT, FLAT, FLAT. I can't believe how good she looks. All her liver enzymes are high, but should start lowering overnight. In fact, they are all much higher than before surgery. It is not uncommon and they will hopefully stabilize soon. They will draw her blood every four hours in order to monitor it. The risk for the next few days is for infection and rejection of the liver. I will stay in her PICU room and Scott will stay in the Lied Center. Please continue to keep Janna and the donor family in your prayers. Their gift to Janna has given her a chance at a more healthy life!

Monday, August 8, 2005 4:47 PM CDT

Well, it has been a very long day. Noon came and went, so did one and two o'clock. Finally, at 2:20 we took Janna to pre-op. There was more than one donor at the Center the liver came from which is what took all the time to get here. We stayed with her until they biopsied the new liver. All we know is that it is from a child a little younger than her. We will know more details after the transplant process. There are very strict procedures for this. We left Janna with the team at 3pm. By that time, she had napped (yes, I snuggled with her on her bed in PICU) from 11am until we took her down. In fact, she never really woke up, which is a good thing. They gave her some versed (sedative) to relax her when I had to let her go. The nurse from surgery just called to say that the surgery started at 4:10pm and that it was going well. She will update again in 1 1/2 to 2 hours. Please keep the prayers coming. It will be a long night and crucial first few days post surgery.

Monday, August 8, 2005 4:47 PM CDT

Monday, August 8, 2005 10:12 AM CDT

WE GOT THE CALL!!!! Omaha called about 9:20pm Sunday night that they had a liver for Janna! We could drive instead of fly since there would be considerable time in procuring the liver. Grandma arrived to take care of Malina. We left home about 11:15pm. We arrived dead tired and out of nursery rhyme songs (Scott was singing Gilligan's Island theme and Green Acres theme songs--does that show our age!) to Janna. Janna slept for the first hour in the car and then was up for two hours before she slept again. We arrived in Omaha about 4:15am. They took her vitals, drew her blood and then took a chest x-ray. We were told that the procurement team had just left the hospital to get the liver at 5am. That means that we are waiting and waiting. We did get some much needed sleep...and Janna too. They let us sleep in her PICU room. The word now is that noon will be the time they will take Janna in to prep her. The liver will arrive shortly if it hasn't arrived already. Janna is so very hungry. She hasn't had a thing to drink or eat since 8:30pm last night. Please say a prayer for Janna and the donor family who is in need of prayers during their time of sorrow.
You can reach us on our cell phones, as we can use them everywhere in the hospital at this point.

We are in PICU room 5236. The number there is 402-559-5236. We will also have a room in the Lied Center after 3pm, because only one of us can spend the night in the room with her.

Thursday, July 28, 2005 1:08 PM CDT

Janna seems to be doing great these days. She still has a stuffy nose, but it is getting better. She loves the swimming pool and being outdoors. She is really talking now. She is putting 2-3 words together and she definitely knows what she wants. She is our sweet eater, so I know she is related to me!! Her dark hair is still growing and growing. If her hair were straight, it would come to the middle of her back. She will have her monthly lab draw in mid-August and see Dr. Daniel on August 25th. She is still the only pediatric patient in our six state region waiting for a liver with AB blood. There are only five pediatric patients (0-17 yrs old) in the whole US waiting with AB blood. There are only five children her age (1-5 yrs old) waiting in our region, comprised of three O blood types, one A and Janna. She has been on the transplant list five weeks and there has not really been a change in the waiting list. Oh well, we live one day at a time anyway.

Malina's last day of Camp is tomorrow. She loved every minute of it. We have her enrolled in preschool three mornings a week starting August 22nd. She is looking forward to "real" school, as she calls it. The thing we liked the best is that when Janna and I are in Omaha for her recuperation after her liver transplant and Scott is back home working, Malina will attend preschool there all day. They were really willing to help with Malina's care during this time frame.

Our family and our congregation's Youth Group are organizing a walk for Janna in Andale on Sunday, October 2nd at 3pm. There will be a walk, raffle and cookout. We hope you can join us. Please keep Janna in your prayers. Enjoy the rest of the summer!

Tuesday, July 12, 2005 4:26 PM CDT

Actually Janna's lab work looks pretty good, for Janna that is. Her bili is on the rise again at .6, but well in the normal range. Her liver enzymes are still elevated in the high 100's (197/175), along with her GGT (200) and ALK/PHOS (813). Her blood clotting times are in the normal range as well. Even her platelets are at 100,000. We haven't seen that number in a year!! Her chloride is high, so we will have to talk about that on Thursday. She weighed in at 29 lbs.....so, she is still growing! She will be 18 months old on Friday. I recalculated her PELD score using these labs and height/weight. Her PELD would rise to -8 (but they won't be lowering it). All Janna's numbers that they use to factor the PELD are in the normal range, except her albumin and it even came up from last month. The score, as we are told, does not reflect what is going on with her liver and related functioning. We will see Dr. Daniel on Thursday.

Malina is LOVING camp. I don't think she will ever want it to end! She has already gone swimming, rode ponies, water play and to end THIS week...Pump It Up (inflatable play rooms), bowling and Gymnastics. Next week, they are gone somewhere on the bus every day but Monday. I am afraid she is going to think that this is what school is! Janna sure misses her while she is gone. She goes from room to room looking for Maweeeeeena! Janna is getting really good at names and repeating what you say and stringing two words together. It won't be long and she will be chattering up a real storm...trying to keep up with Malina.

Please keep Janna in your prayers. She is the only pediatric patient with AB blood listed for a liver in our six state region.

*******************THURSDAY UPDATE: Janna saw Dr. Daniel today. He thought she looked really well. He agreed that we should discontinue two meds, the Aldactone and the Lactulose. She hasn't had them for a month now and has had no problems. Yipee! We have to watch out for any fevers and changes in her. We will see him again next month. It was so good to have a short visit.

********************FRIDAY UPDATE: Well, Janna gave us a scare this afternoon. She was playing around in her crib when I went in to get her from her nap. She ran across her crib, lost her balance and hit the slats of the crib pretty hard. I thought she hit her head, so I grabbed a diaper wipe and put it on her head while she was wailing. I rocked her and a short time later looked down and saw blood on her hand, my shirt and blood oozing out of her mouth! I was frantically trying to figure out where it was coming from. I kept dabbing them in her mouth and tried to feel all of her teeth. The bleeding stopped. I think her sucking on her binkie helped to stop the bleeding. She had a fat lip. I think she was trying to catch herself while she was falling and lifted her head and when she did, the impact was her front teeth. I think she cut her gums under her lip. Whew, was I glad she stopped bleeding. Since her platelets are low, that is always a worry. I had her eat a popsicle to keep something in her mouth while I decompressed! That was scary. I called the ped's office to make sure there was nothing else I needed to do. I didn't let her out of my sight the rest of the day.

Malina has another cold. I think she picked up something from camp since she is not used to being around so many kids. She is so congested, sneezing and all. I hope she doesn't give it to Janna....or Scott and I.

**********************Tuesday Update:
Well, Malina is still coughing and has missed two days of Camp. She has had some rough nights coughing and nothing seems to help. She will go back tomorrow. She is getting better and coughing less. Of course, now Janna has a runny nose and some congestion. Nothing new at her 18 month checkup today.....all is well, okay, well enough for her!

Sunday, June 26, 2005 9:35 PM CDT

Weekend Update: Janna;s appt to see Dr. Daniel's was cancelled last Thursday, so his nurse wasn't able to help with the PICC line dressing. I got fed up by Friday morning and called the home health nurse to change the dressing for the FOURTH time since we were home. It was taking 45 minutes to infuse the medicine when it should have been 10 minutes. I feel so sorry for Janna because the tape being ripped off her arm each time really hurts. The stitches are already off on one side of the catheter. I had her tape it really well so hopefully we won't have any trouble this last week. She didn't think changing the dressing would help, but so far it has worked like it should. (I am knocking on wood.) The PICC line should be removed Friday morning. I will be so glad and I am sure Janna too. She will get a real bath again and will be able to swim with Malina and go outside and play in the sand and water table. What a treat!

Janna will have labs drawn the week of July 5th. We will see Dr. Daniel in Wichita on July 14th for her monthly check up. We are hoping and praying that the bile lakes do not cause recurrent episodes of cholangitis. That would mean 3-4 days in Kansas City, another PICC line and IV antibiotics each time until her transplant.

JULY 4TH UPDATE: Her PICC line was removed on Friday. Yipee! Just in time for her to get a runny nose, congestion and cough that Malina picked up last weekend. The humidifiers are running in both rooms. Labs will be drawn on July 11th for her appt on July 14th.

Malina goes to Camp Shalom tomorrow at our congregation from 9-12 every day for the rest of July. We will see how it goes. This is her first year. She is very excited about it.

Please continue to keep Janna in your prayers.

Wednesday, June 22, 2005 8:10 PM CDT

The good news arrived late this afternoon...JANNA IS ON THE TRANSPLANT LIST THROUGH OMAHA!! She is just one phone call away from a new liver...we just don't know how long that could be...days, weeks or months. We are also going to start looking into the living donor option since her PELD score is a negative. Her score is low because it measures weight (90 height (above 75 bilirubin (normal at 0.4), albumin (low) and her bleeding times (normal range). The factors the scoring does not take into consideration are what is causing Janna's problems--portal hypertension, splenomegaly (huge spleen--low white blood count and platelets), anemia, esophageal varices, vitamin A deficiency, etc.

The bad news is that her PICC line occluded late last night, which means that I could not infuse her IV medicine. The home health nurse was called at midnight and after changing the line, it still did not work. It was a night of restless sleep thinking that I would have to take Janna back to Children's for another PICC line. However, vascular access wanted the dressing to be changed first. It was changed and it seemed to work again. The blood work was drawn for Omaha and the nurse left. Her morning infusion took 2x as long as it should have. There is still a problem with the dressing. Her late afternoon infusion wasn't much better. Dr. Daniel's nurse will try her luck at changing the dressing at the doctor's appt tomorrow afternoon in Wichita. I hope she can help with it. If not, we will keep trying to change the dressing through home health care. We have to keep it in until next Friday morning. The real problem is that Janna has to sit still and the tape that has to go over the PICC line is like peeling off your skin. All of this has to be done in a sterile environment as well....you get the picture! She has had two dressing changes in the last 24 hours and another one tomorrow, but it is better than having to travel to Children's and getting a new line.

Please keep Janna in your prayers. This is what we have been wanting to hear the last few months, but the surgery is very risky and has all sorts of possible complications.

Saturday, June 18, 2005 11:12 AM CDT

We made it home last night about 10:15pm. Malina was still up, so it was good to see her!! Our last two appointments in Omaha were delayed, so we got home later than we had originally planned.

We really feel comfortable with the transplant "team". They took their time with us answering all of our questions and not leaving until we were finished. We are hopeful they will list her. Their committee meets on Wednesday afternoon and they will discuss Janna's case.

We will be discontinuing two of her meds!! Hooray!! They feel that there is NO ascites (none has shown up on the last two ultrasounds and CT scans) and since her potassium is rising, which is not a good thing before a transplant, they want us to stop that. Also, the lactulose. They feel that it is giving her excessive gas and that is what is causing Janna to become bloated and very uncomfortable.

They do not believe in putting Janna through another surgery to drain the bile lakes. They are getting a copy of the film from her CT scan from Children's to get a more detailed look at the lakes. The flip side is that since the lakes may not be able to be drained without surgery, she may get continuing cholangitis until her transplant.

Janna will have to repeat all of the viral studies since she had a transfusion of blood AFTER the first set of viral studies were done in March. I'm glad I asked this question as I wondered with NEW blood there could be a change in her viral study outcomes.

We see Dr. Daniel in Wichita this Thursday. We plan to use the labs from Omaha. Since we did not hear from Children's after their committee meeting concerning her bile lakes, we are also anxious to hear what they decided as well.

At this point, we are moving forward with Omaha as the place for Janna's transplant. We will still see Dr. Daniel once a month in Wichita until her transplant and will see him again once she is released from Omaha.

At this point, Janna is enjoying being home again. She is much better and is back to her happy herself. She has been through a lot these past ten days. (Read the last post in journal history to find out about her hospital stay at Children's last week). The five plus car ride was long as well, but we survived.

Please keep Janna in your prayers. We hope their decision is to list her for transplant at this time, but won't know their final decision until late Wednesday. Of course, we will post when there is more news.

PS...the big news is that Malina spent the night at Grandma's house. This is the FIRST time she has stayed away from home and not slept in her own bed!

Tuesday, June 14, 2005 5:16 PM CDT

Miss Janna just returned from a four day stay at Children's Mercy in Kansas City. She started running a fever, moaning and was very restless early Thursday morning. After a run to the lab and the local pediatrician's office to rule out her ears, nose, throat, we were off to KC. They started her on IV fluids and two IV meds and she had to be NPO (no food or drink) from 4am on for an 8am ultrasound Friday morning. They found no ascites and no other problems, other than a huge liver and spleen. After she drank ONE bottle, they made her NPO again to have a PICC line inserted at 2pm. All was going well until the PICC line started occluding as soon as we left radiology. She started getting fussy after dinner Friday night and had some diarrhea. They ran urine, stool, baterial and viral cultures. We were to be discharged if they were all negative on Saturday night. Well, Saturday morning, Janna was feeling lousy. You could see it in her face. She was clingy and still had diarrhea. They had her NPO for the whole day. She had a chest x-ray and an abdominal x-ray Saturday morning, but the only thing they saw was diminished lung capacity due to her HUGE liver and spleen. A CT scan could not be performed until Sunday. She was so bad all day Saturday that I literally held her all day. She would not get down until about 5pm that day. The worst problem was the PICC line was not working properly. In fact, when the IV was running for more than 24 hours, I had to hold her arm at a 90 degree angle for it to work and for all her IV medicines every eight hours. With it being the weekend, there was no one to be able to look at it to determine if it was positional or there was a kink in it. We had to wait until Monday. I was helping the nurses by restarting the machines every time there was an alarm. That was a BIG mistake because in her chart it showed that it was working. Her CT scan was with contrast, so they had to insert a feeding tube in her nose to get the contrast into her system. That was a horrible experience. She threw up part of it. She was great during the CT scan and did not have to be sedated. We spent the rest of Sunday being able to eat and drink. They she had to be NPO at 4am to be able to have her PICC line reworked Monday morning...so we thought. Well, the nurse in radiology would not give Janna an appt to have it looked at. She said it was working. That was the last straw. I called our GI doc and left a not so nice message on the nurse's line. The nurse came in and told me they were on their way. After 15 minutes, no one was there and still no headway on getting Janna seen. I left another message that I wanted her discharge papers and I could find some hospital in Wichita who would fix her line. I was livid to say the least. I had spent 2 1/2 days holding her arm in the air, trying to keep the IV and meds flowing. We finally got an appt and guess what, there was a kink in the line!! More bad news...her doctor said that the CT scan showed two bile lakes. One is larger and near the portal vein at the bottom of the liver. The options are to drain them and she would have an external drain bag or surgery to drain the lakes. He explained that Janna would possibly need to have a 6-7 hour surgery to detach her Kasai (her original surgery), cut the liver up to the bile lake and then reattach the intestine to the liver. I told the doctor a TRANSPLANT sounded better. The GI doc, surgeon and radiologist will meet Wednesday to discuss her case and tell us their opinion. Did I mention that we were in isolation until the moment we left!!!

We arrived home Monday night at 6:30pm and will leave Wednesday at 2pm for Omaha for her transplant evaluation. Janna's doc wants us to go to Omaha to have this appt and wants another opinion on her bile lake issue. We have appts all day Thursday and Friday. We hope to be home again late Friday evening.

Janna is not herself. She is clingy and wants to be held most of the time. That is not her. Her liver disease is now affecting her quality of life. She is not eating as well either. I hope the IV meds help her soon. She is taking Ancef another 17 days three times a day by her nurse, Mom. We will see Dr. Daniel next week in Wichita for clinic. We will finish the meds on June 30th. Please keep Janna in your prayers.

Monday, June 6, 2005 1:05 PM CDT

Our visit to Omaha for a second opinion/transplant evaluation has been rescheduled to June 16-17. Omaha did not get Janna's records until it was too late to schedule the appts to keep our original appt on June 7-8. That really seems impossible since I made the request SIX weeks ago for her medical records. We will leave June 15th in order to get to Omaha in time for Janna's meds and bedtime. She has to fast from midnight on since she has a lab draw at 7:15 and her ultrasound at 8am. After these two tests, we will meet with the transplant team the remainder of Thursday and Friday. We hope to be back home to Malina and Grandma Friday night by 10 pm.

The girls are worn out and us too. They had a party for three days. First was my youngest brother's wedding rehearsal dinner at Grandma's (and we spent the day there getting it all ready), the wedding on Saturday (Malina danced every dance until we carried her out the door)(Janna was dancing too, but we had to protect her from the out of control dancers) and then Grandma's surprise 65th birthday party on Sunday. We are glad to stay home again.

Monday, May 16, 2005 3:22 PM CDT

Yipee!! Well, we made it two weeks without going to the doctor! I had to take Malina back to the doctor. She was complaining about her ears still hurting and she wasn't sleeping well at night. In fact, Janna was sleeping through the night (hooray) and Malina was getting up! Malina will have to take Omnicef for ten days. I hope this works for her. Other than that, she is feisty as ever. She is going to attend a camp the whole month of July (if they don't throw her out) in the morning. We will take it week by week.

Janna will have her labs drawn on Thursday for her appointment to see Dr. Daniel on May 26th here in Wichita. She is getting more and more varices on her face. It looks like her face is dirty all the time. She has had some blood in her nose more often in the last month. She is sleeping much better now, which is a worry. Sleep is not always a good thing. If her liver is not functioning well, her ammonia level can rise and that can cause her to be sleepy and much worse problems. I am going to ask that they test that this week just to be sure. We are tentatively set to go to Omaha on June 7-8 for her transplant evaluation. We are still waiting for her records to get there before it will be confirmed. Then they will determine what tests will be run.

Malina's favorite activity right now is to go jogging with Dad....she tells him to run faster the whole time!

Janna is talking more and more....her favorite is "give me", but rarely does it work when she says it to Malina! She is walking really well, even with her huge belly, but sometimes she takes off too fast and has had some bad spills causing some bumps, scratches and bruises. It doesn't seem to slow her down though.

All the weekends in May are busy as usual...and then it will be summer.

UPDATE: Janna's labs were drawn a few days early on Tuesday because I was concerned about her sleeping more. The good news is that there is nothing to be alarmed about. She is sleeping through the night because she is. In fact, her labs were pretty good. Her ammonia level was a little high, but they think that it was a bad draw due to the timing of test, travel time to the lab, etc. For the first time since last July, her platelets are in the normal range (just barely at 153,000). Her bilirubin is back in the normal range at 0.8. Her liver enzymes are continuing to decline (AST 115, ALT 183, ALK 765, GGT 156)! Her hemoglobin and hematocrit are still in the normal range...so no anemia, which was the other concern with her sleeping better. For the first time since February, we are not running the humidifier in the girls' rooms. Now we (mom and dad) are having trouble sleeping. We got so used to the noise!! We will see Dr. Daniel on Thursday, May 26th. I will report more then. In the meantime, we will enjoy Janna sleeping through the night!

FRIDAY UPDATE: Janna had her appt with Dr. Daniel yesterday. She is retaining fluid again, so he doubled her dose of the diuretic. She gained 20 oz this last month and they expect her to gain only 6 oz. Her belly is big again and she is starting to grunt again, which means her organs (liver and spleen) are pushing on her diaphram. I didn't realize she had stopped grunting until she started it again! No other changes. Her spleen and liver are the same as last month. He doesn't think that the lab was accurate with her platelet count--so they are not in the normal range as reported. She is having some issues with her balance, so they will check her vitamin E level when we are in Omaha. If that level is normal, then it is just her huge belly that is causing it. She has had some bad spills lately, so I am hoping to get an answer on that issue--or I will leave her in her crib all day!! Her teeth are getting gray, which is a normal progression with kids and liver disease. When her permanent teeth come in, they should be fine...I hope. We will see him again next month.

Malina is learning to ride her scooter. We will have to go back to the doctor at the end of July and have her ears checked again. She still has fluid in one ear, but no infection. She is glad she doesn't have to take any medicine any more.

Saturday, April 30, 2005 2:08 PM CDT

The girls have endured many illnesses in the past four weeks....pneumonia, two bouts of cold, congestion, runny noses and coughs, dermatitis, vomiting, diarrhea, rotavirus and a sinus infection. Just when I was knocking on wood that the girls had not been sick all winter. Well, it all caught up with us the end of March! I surrender!

Well, Janna's labs last week show that her liver is still deteriorating. Her bilirubin is the highest it has been since her Kasai (other than her bouts of cholangitis). It is now 1.3, which is just over the normal range. Her liver enzymes are still in the 200's. One should be under 35 and the other under 60. Her platelets are still low, but her bleeding times are just barely in the normal range. Her "blood" part of the labs looked really good, but attribute that to the transfusion, iron supplement and restricting her cow's milk. She now weighs 27 lbs and 32" long. Her ascites (fluid on her abdomen) is still under control with the diuretics. Her doctor was happy with her progress, even though her liver numbers are still high.

Janna is now fighting a sinus infection. The first medication gave her diarrhea so bad, we had to switch meds. So far, the diarrhea has not slowed down with the second med. Just what she needs, more medicine! She is such a trooper though. She takes her medicine really well.

Malina and Dad have another cold. Hopefully Janna will not get a third one! It seems just when someone gets over one, here comes another one.

Malina had her first hair cut (other than getting her bangs cut). It is now shoulder length. She looks so much older! Mom cried...Dad (Mr. Military) wanted it shorter!

Once a copy of Janna's records get to Omaha from Childrens, they will call us to schedule a transplant evaluation. They will use as much of the testing that was already done at Childrens. We hope to have this completed by the end of May.

MONDAY UPDATE: Back to the doctor...Malina had a horrible weekend and started complaining about her ear and throat hurting on Sunday. The poor girl has an ear infection in BOTH ears. The PA said they were pretty inflamed and blistered. So, ten days of amoxicillin and ear drops. Malina is so strong, it takes both of us to hold her down to get the drops in her ears--even with the promise of a new movie, a popsicle--she doesn't let up! At least her urine sample showed no UTI.

Now Mom has the cold too and Janna's nose is starting to run again.

We just changed pediatricians on March 1st. Since then, we have been to his office SEVEN times.

Friday, April 15, 2005 9:52 PM CDT

We made a day trip to Kansas City on Thursday for the American Liver Foundation's Fashion Show and Fundraiser. It was a fast trip, but we're glad we went. Thank you to all of you who made a donation in Janna's honor. I had to carry Janna in the Fashion Show, so they fixed my hair and makeup....what a treat! I even got to wear a $500 outfit....and the top was WHITE. I kept reminding them that I was carrying a 15 month old. She was the youngest and the only model that had not been transplanted. We were the first models and she was the "belle of the ball". She was so enthralled by watching the announcer that I could hardly get her to look into the crowd. She had fun walking around before the show and shopping. We got to meet some of the CLASS moms and kids. That was so nice to put a face with a name.

We were so touched that two people, total strangers, came up to us and offered to be a living donor for Janna. The lady who did my hair for the show was one of them. She stayed for the show and gave me her business card with every phone number she has on it. Another was a guy who had already donated part of his liver and would do it again "for the right child". They were both so sincere. I kept telling Scott that our trip would be worth it if only one person would become an organ donor. I think seeing Janna's face and the face of the other young children tells another side of liver disease...a side some people don't think about.

The down side is that Janna had a runny nose the day before we left. On the way home, she became congested and now has a cough to go with it. Malina now has a runny nose and is really congested. Here we go again....under house arrest. Just when we had plans with friends for Saturday and Sunday!

Janna seems to be doing okay. Her belly is not so distended, but her weight can vary by more than a pound in a few days. We have had to restrict cows milk to no more than 24 oz a day. So, I now supplement her with Pediasure since she still wants 30 oz of "substance". We tried Soy's Milk and she had no problems with it, but nutritionally, the dietician said Pediasure is better for her. She shivers and shakes when she has to swallow the iron. I follow it with a orange juice chaser. Poor girl. Janna will have two shots and a lab draw on Thursday. We will see her GI doctor here in Wichita on April 28th. We are back to our monthly doctor's visits for now.

Malina has her first eye exam on April 28th. That should be interesting. Her quote of the week came just after her nap one day. Janna was asleep and had made a real mess of the toys. As I was picking up the toys, I asked Malina to help. She replied, "I'm too exhausted!" Now, where did she hear that word...must be from Dad!!

Wednesday, March 30, 2005 9:51 PM CST

The transplant committe decided NOT to list Janna for transplant at this time. They will present her monthly to the committee and will list her immediately when her condition changes. She will continue to see the GI doctor each month just like we have been for the past year.

Unless Children's becomes an in-network provider under our insurance policy before Janna's transplant, she will not have her transplant there. We are pursuing another transplant center so we are ready when she is listed. We are leaning toward Omaha. We are going to do more research before we decide. Hopefully they can use some of the same test results.

Janna's anemia is cause for concern. It is not a normal complication of portal hypertension. She will have labs drawn tomorrow, which will be one week after taking iron. They will continue to monitor her labs closely until her hemoglobin and hematocrit are in the normal range.

They will also monitor her ascites (fluid on the abdomen) closely. She will continue to take the milder diuretic because it does not deplete her potassium level. They will save the Lasix treatment for relief when her belly becomes more distended.

Malina is feeling better after four days on antibiotics. She is still coughing, but that is expected. She is getting back to her ornery self! Janna still has a runny nose and a cough in the morning and some at night, but it is all clear and she has no fever....but who knows what tomorrow will bring. My motto is "one day at a time".

We are getting ready for Malina's THIRD birthday party on Sunday. She is so excited! It will be a very small gathering since the girls are still fighting off these bugs.

THURSDAY UPDATE: Janna's labs showed that her hemoglobin and hematocrit were higher, but still not in the normal range. We will draw labs in another three weeks according to the doc, but I may not be able to wait that long. Her platelets are 33,000 (normal is over 150,000). This is the lowest they have ever been! If the level drops below 20,000, she would have to have a platelet infusion. I hope we never get to that point. Her white count is down to 1.5 (normal is over 6), but it has not been over 2.5 since last July.

Malina started running a fever today. She had a horrible day. They think she picked up a virus somewhere. Now that she is contagious, we have to keep Janna away! I hope tomorrow is a better day. I am worn out!

TUESDAY UPDATE: Malina had a great birthday. She is still celebrating. She is feeling much better. She is finished with her antibiotic. We did not have to give her a breathing treatment or any cough medicine so we will see if the dr. thinks it was pneumonia or asthma. She went along to the doctor today. She kept her sunglasses on during the visit and sat on the floor beside me like she was trying to hide. She told the nurse that she did not want a shot today.

We had to take Janna to the pediatrician today for a rash on her arm. It started Monday, but had spread down her arm and is now on her legs. They think it is either a viral rash that accompanied her runny nose and cough or contact dermatitis. We are treating with a steroid cream. Both girls will see the dr. again on Friday.
Malina has her three year checkup and Janna has to get FOUR shots--poor girl!

WEEKEND UPDATE: Malina had her three year checkup. She is above the 95or height and off the charts for weight. Maybe she will be tall like her daddy. She now has to go to the dentist and eye doctor--oh boy! She had her hearing checked so we know she hears us when we say "no" for the hundredth time! She has dermatitis, but we are treating it with over the counter creams and it is working so far. Other than that, she is healthy!!

Janna had two shots and her liver and spleen were poked and prodded, as usual. She is doing well also. She is off the charts for weight, but who knows how much her liver, spleen and the ascites weigh. She is above the 90or height. Looks like Mom may be the short one in the family! She will have labs taken the week of April 17th to see the GI doctor on April 28th. The pediatrician also wants some iron studies done to determine what is going on with her anemia. Maybe we will get an answer and a way to treat it more effectively. For now, I am trying and I mean trying to limit her to no more than 24 oz of milk a day. I am going to try some soy milk as a filler.

Friday, March 25, 2005 2:13 PM CST

We are back from Children's and the evaluation, but one day later than planned. Janna had to be admitted overnight for observation.

Tuesday, we had to wake her two hours early for the drive to KC. She did not sleep at all the whole way there! She had seven vials of blood drawn. We then saw the Chaplain and the social worker. Janna had to quit eating and drinking at 12:30 today. We met the nutritionist and then Janna's GI doctor. This visit was about 40 minutes short since things were running late already. She lost 1 1/2 pounds since her last visit. They think that either she did have ascites and the diuretics finally worked very slowly or she has reached a plateau with her biliary atresia. He also mentioned that her labs were really low and they wanted to repeat them just in case it was a lab error before they acted on it. Her bili was up one notch to 0.9. Her liver enzymes are still elevated. Her platelets are still really low at 43,000 (normal is above 150,000). Her white count is low at 1.8 (normal is above 6). Her bleeding times are good though. She then had her chest x-rays, hemiskeletal x-rays and abdominal ultrasound. We finished early. Janna had NO nap all day! She was glad to get to the hotel room and play and, of course, eat and drink.

Wednesday, we had to wake her up two hours early again. This time she had to have her milk, her meds and breakfast all before 7:30 am...and Janna is NOT a morning person!! She could have clear liquids only until 11:30 am and then nothing. She had more labs (five vials) and they were running 45 minutes late already at 10am. We met the transplant coordinator. She talked about a possible splenal-renal shunt being placed in order to prevent Janna's spleen from growing larger. We met the child life specialist before her CT scan. They had to sedate her for the CT scan because they could not rerun it the same day if she did not lay still enough for a good film. Well, her blood pressure dipped alarmingly low during the scan. They think that because of all the blood being drawn the past two days, plus all the time she could not eat and drink that she became dehydrated. They started an IV. They had to admit her overnight for observation. Right before this, we found out she was indeed anemic and she had to have a transfusion before we came home. Again, she had no nap all day. They let her sleep an hour before waking her after the scan. She drank about 10 ounces and was out again for three hours. Boy was she mad when she woke up in a hospital room, all the leads on her chest, the o-ring on her toe and the transfusion running. They had to run the transfusion over 4 hours. It was one unit of blood. They didn't want her belly to become distended after all the fluid. She finally got some rest--about 10:30pm after the transfusion was over and the nurses decided to leave her alone.

We were discharged late Thursday morning after rechecking her labs. Her hemoglobin is still not in the normal range, but out of the danger zone. We had to travel across KC to see the transplant surgeon. He had to cancel our appointment on Wednesday since he had a kidney transplant. We were back on the road home about 2:30 pm.

Janna is sure glad to be home again. She now has to take iron for who knows how long--that makes ten meds 17 times a day. Miss Malina and Grandma were glad to see us! Malina has a horrible head cold. I sure hope Miss Janna doesn't get one too!

The transplant team will meet on Wednesday morning to discuss Miss Janna. They will then decide whether it is time to list her, hold off now, or list her after a problem area is addressed. Then we will find out the results of all the tesing as well.

Thank you for your continued prayers.

UPDATE: Malina starting having trouble breathing Saturday night. Scott took her to the E/R and she has pneumonia!! Just what we need to deal with on top of everything else!

MONDAY UPDATE: We took the girls to the pediatrician as a follow-up to the ER visit. He thinks Malina could have asthma and not pneumonia. We now have a machine for breathing treatments, but so far she hasn't needed one. Janna has a runny nose and cough and hopefully nothing more will come of it. We see the dr. again on April 8th.

Wednesday, March 16, 2005 10:23 PM CST

We are still waiting for pre-certification from our insurance company for the transplant evaluation and transplant. We hope to hear this week. Janna's evaluation is scheduled for March 22-23 at Children's Mercy in Kansas City.

The diuretic has done nothing the last three weeks to reduce her girth. Tomorrow Janna will get one dose of Lasix--a more potent diuretic. I hope this gives her some relief. She is very restless at night and during her naps--just when she was starting to sleep through the night!!

Tuesday, March 1, 2005 9:35 PM CST

Well, Janna's monthly GI visit February 24th was from far from cursory. Her labs were fine, but the day before her visit, I noticed that her stomach was more distended and the veins were really poking out. When they weighed her, she had gained 1 lb 9 oz in less than one month. She should be gaining about six ounces a month at this point. Dr. Daniel felt her liver and spleen. He said her spleen is larger than when he scoped her on February 2nd, which was about 20 days apart. He told us it was time to start the transplant evaluation. He is concerned at this point that she will have a bleed from all the pressure. He knows that there are two varices. He also knows that he cannot band her to prevent a bleed. He started her on a diuretic, but in five days, her stomach is even larger. That means there may not be much if any ascites (fluid) on her and that it is her spleen and liver. The only way to reduce the size of her spleen is to transplant. We are waiting for the transplant appointment to be scheduled. They will also do an ultrasound to check on the spleen and ascites.

I will update when I know more about the appointment. Please keep Janna in your prayers.

Monday, February 21, 2005 12:12 AM CST

Janna's monthly labs were drawn on Feb 17. Here are the results:

BILI 0.8
AST 184
ALT 316
GGT 233
ALK/PH 943
PLATE 92,000
WBC 2.4
INR 1.1
PTT 26.3

Her numbers are still continuing to decline since her bout of cholangitis in December, except for the GGT & AKL/PHOS.

Her GI scope Feb 2nd showed no new varices. She still has two of them, one is wider, but the doctor was unable to get the banding equipment into her throat. Even though she weighs 26 lbs, she has such a petite face and features, he could not get the equipment in to band the varices. He will try again after she gains some more weight.

She is walking all over the place on her own, making all sorts of animal noises, blows kisses and tries to keep up with her sister, Malina.

Saturday, January 29, 2005 3:24 PM CST

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