August 30 - End of Summer Update

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

It has been a busy summer for Annie. She went to Montana for a Fuglevand family reunion over the 4th of July, and then on to Butte Montana to be with Jane's family for the month of July. At the end of the month she flew back to Seattle and then on to Mexico with her dad to catch up with the church youth group on a mission trip to Teajuana (sp?) to build housing for the poor. Then she traveled back to Montans for the first week of August for a few last days at her grandparents cabin at Canyon Ferry. From there she traveled back to Redmond for the rest of August. She stated classes at Dratmore (Spanish and math review) and is signed up to start classes at Bellevue Community College (BCC) in September. She needs a couple of classes to finish high school, and she will do that with a couple of college classes that will count towards both her high school diploma and college credit. She will take classes at BCC this year, and then hopes to enter a 4-year college next fall. Right now she is thinking about nursing - she certainly knows what that is like and feels she could be good at it.

Through it all her new liver has been doing well. As of last week the transplant team continues to be pleased with the stability of the liver. The doctors have tapered down her medicines over the summer - she still takes about 8 medicines, some twice a day. Even though the liver is doing well she has not felt so good the last half of August. She started haveing more neurological events mid month that have seemed to progress. On Monday of this week Annie had a long episode at home where she lost consciencenes for about three hours. Half way through it we called 911 and Annie was taken to Children's hospital. After several hours in the emergency room she was admitted to the pediatric intensive care unit (PICU) on Monday night where she spent a couple of days and underwent extensive neurological testing. Initilally they thought Annie was suffering from swelling of the brain, but addtional evaluations proved that not to be the case. Other tests eliminated tumors, eliminated brain infections, and eliminated epilepsy. She was discharged from the hospital today, still uncetrtain what is causing these episodes. Possibilities include a rare form of migrains that cause siezures of this form, and possibly food realted alergies that can trigger some episodes. We will be looking at these over the near future.



,

June 2, 2007. Annie Graduates from High School

Annie graduated from Bishop Blanchet High School on Saturday evening, June 2! The graduation was held in the high school gymnasium with 250 graduates and about 1000 family members. It was a great evening. When Annie walked across the stage and was handed her deploma the process came to a brief stop while Annie got a special applause by the students and staff. It was touching.

Annie had enough credits through her Junior year, plus the self study she did last fall, that she only needs a couple of credits to meet the graduation requirements, so she will be taking a couple of self study classes this fall. She then plans to attend community college this year and will go on to college the following year. All of the colleges she was accepted into this year have given her a deferred enrollment of one to two years. Right now her plans are to study either nursing or education.

Annie continues to make good progress, she is better this week then she was a couple of weeks ago. Her liver remains stable! Her appetite contintues to hold. But she still struggles with neurological episodes even though we have cleared several medications. The doctors have told us she still has a ways to go. And we know that the Good Lord is working this all for good, He is walking by her side.

Thanks for all of your support and prayers. May God bless each of you 100 fold for all you have done for her and for us. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

May 27, 2007. Update

It has been about 10 days since my last post. The picture is from a May 18 assembly at Annie's school for Living Legacy, encouraging the students and staff to consider organ donation. It was a lot of fun, and the students at Blanchet were so glad to see Annie back. She got an amazing standing ovation from her classmates. The last time she was in the building was during the first week of school last September. We were amazed to see so many of the students and staff wearing the T shirts. The picture is Annie with several of her Holy Family friends that came to the assembly: Emily Gilbert (from Holy Names) Teresa Hoey, Michelle King, Annie, Mary Hoey (Blanchet), Hanna Peterson (Holy Names) and Molly Whitlock (Univ. Washington).

Annie was not well for four days after she got out of the hospital on May 17. She had several nurological events, and significant difficulty eating and drinking, started loosing weight again. It was four of the toughest days we have had in a long time, and we all hit bottom. By Tuesday she got better! We finaly figured out that the four difficult days were probably withdrawal symptons because she had just come off of two medications that week, and another that weekend. Over the past five days since Tuesday she has been pretty good, eating better, and no significant events. The trend is in the right direction. She is getting out more and feeling better. Last night she went to the Holy Family school play and had a great time seeing an outstanding production of Treasure Island (way to go HFK!). We saw so many people at the play who were so glad to see Annie out and about. Tonight she went to Mass and then she is going out to dinner with some friends. She is definitely better than she was a couple of weeks ago - and she still has a way to go.

Once again thanks to all of you for all of your prayers, your love, and your support. This has been an amazing journey, one that has been made managable by all of your support. Please continue to keep baby Emma and her parents in your prayers. They have a very long and difficult walk ahead and need our prayers.

God bless you all. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

May 17, 2007 Home again!

Annie came home from the hospital this afternoon afer a four day "tune up" at Children's. They put an IV in her and got her fluid levels back up. And they also discontinued two medicines and decreased the dose of another. We are hoping that these changes will help ger to get her appetite back. Thank you all for your support and prayers.

Tomorrow Annie goes back to Bishop Blanchet High School for an all school assembly about organ donation put on by Living Legacy. The speaker will talk about organ donation, and will explain how the students and staff can consider organ donation. Annie hopes to say a few words as well.

We continue to be greatful for the Good Lord's grace and blessings. He continues to walk with Annie and with us, gives Annie strength and endurance and a will to face each day a new. He is answering your many prayers.

While in the hospital Annie got to see baby Emma and her mom and dad each day. Emma continues to jump hurdles and grow. As of yesterday she is just shy of two pounds, double her birth weight. God continues to bless Emma and her family - please continue to keep them in your prayers.

Today Jane flew to Montana to surprise her dad on his 80th birthday. We were not sure if she could go because Annie was in the hospital, but it worked out that she could go. Jane's mom told her dad that she had recieved a call from me this morning and that I was shipping a package to them that they would have to pick up at the airport. Her dad was totally surprised when he got to the airport and discovered that the "package" was Jane. She will spend the day with them and fly home tomorrow morning so she can attend the assembly at Annie's school tomorrow.

Take care. God Bless. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

May 14, 2007 Back to the hospital

We are taking Annie back to the hospital today. The last week to ten days has been tough for Annie and the doctors decided today to admit her back at Children's to see if they can get the issues resolved. The main problem is difficulty with taking in food and water. It appears that one or more of her medicines have depressed her appetite, while at the same time making her gag reflex hyper active and making her nauseated. This has been an ongoing progression, and became a seriouse issue over the past few days because she has not been able to really eat or drink much. She is loosing weight and is dehydrated. Just trying to drink water makes her gag and wretch. She is supposed to have food with some of the medications. Not being able to eat means the medications are not being metabolized they way they should be, which makes it even worse. The doctors can't just cut the medicines because they are protecting the liver from rejection (as of last week the liver has been doing fine!!!). And all of this is wearing Annie out. It has been such a long road for her and it is taking its toll.

If you can, please continue to pray for her, for strength and endurance as she walks this path. As she said, we know the Lord has a plan that is good and full of grace. Someday looking back on this we will see His hand at work and be greatful. Right now we pray for the strength to endure and the faith to trust Him "Jesus, I Trust in You!"

God bless. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

May 5, 2007 - Last Night's PROM

Last night Annie went to the prom at her high school (Bishop Blanchet High School) with three of her very good friends. Her date was Josh Kirschner, who she has known all through grade school. She went with Mary Hoey and Nick Asmussuen (?). All four of them are active in Life Teen, the the youth group at church. The evening started with the families of all four plus some other good friends meeting at our house for a bit of food and cheer. They left about 6:30 in a limo and went out to dinner and then to the prom. The report was that they had an AWSOME time, and that Annie was like a celebrity at the dance. Most of the kids had not seen Annie since last September and they were very excited when she came to the dance. Her energy held up, she was able to dance and enjoy her friends. The evening was an amazing grace. God bless you all. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

May 1, 2007 Tuesday Update

Here is Annie on Sunday April 29th just after discharge from Children's. She is sitting with the Lambs in the visitor area at the intensive care unit at Childrens, to visit baby Emma and the Lambs. These visits with the Lambs have been a great boost for Annie, they are such great people, and Annie looks forward to see them each time she has to go into Children's for blood work or an apporintment. She is in four or five times this week.

Shortly after the picture was taken Annie had another episode where she passed out, in the ICU visitor area. The charge nurse for the ICU came right away, and Annie was transferred to Children's emergency room. I was home at the time and that was when I got the call from Jane that said Annie was back in the emergency room. My heart sunk. By the time I got to the hospital Annie was back in the hospital on 4th floor. They held her for observation for a couple of hours and then let her come home. Home is a better place to recover!

It is now Tuesday morning. It continues to be an up and down journey. For example most of yesterday Annie was quite run down and also down hearted, her spirits kind of hitting the bottom. She has been on such a long journey, it is so understandable. But then with Annie being Annie, she perked up late yesterday afternoon and went out with Jane to Redmond Town Center. Nothing like a litte shopping to cap off the day! She is so amazing, she is so tough, she is so great, I just love her. She won't let the down stop her from having the ups. Last night she slept well. We are greatful for these good moments. We are greatful for the amazing grace.

Thank you for all of your prayers and support. They continue to be a source of great grace. And we ask the Good Lord to bless you each a 100 fold for all you have done for us. His blessings on you is also a part of this journey. And please keep baby Emma and her parents in your prayers.

God bless. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

4-28-2007 Saturday Update

Annie spent yesterday in the hospital and met with several doctors who were trying to sort out the episodes she had on Thursday. Last night they changed her blood pressure medine and increased the dose of her siezure medicine. They want to keep her in the hospital another day to see how the medicines work, and there is a good chance she will be home tomorrow (Sunday).

Overall Annie is feeling a bit better. She had a good nights sleep, much better than the prior night which was quite difficult. The doctors have told us that this is the path she is on for a few months, and than three months from now this should all be in our rear view mirror.

I added this picture of our family (Paul, Annie, Jane, Ben) from this Easter because I realized that there are people praying for Annie across the country who do not even know us. I wanted you to know how grateful we all are for your amazing gifts of prayer, and I wanted you to see that your prayers are being answered by the Good Lord. And here we are on Easter, the day when the Good Lord taught us in such a profound way that suffering placed in the Father's hands is redemptive, is life giving, is a source of Amazing Grace. Thank you so much and may God bless you all abundantly.

Since baby Emma Lamb is now at Children's we get to see her and her mom and dad each day. This morning Annie, Jane, and I had breakfast with them at Children's cafeteria. Keep the prayers comming for Emma. She has had several good days but she has a long way and many hurdles to overcome until she reaches "full term" - her normal birthdate would have been late July. It is a long road for her and her great mom and dad and they need our prayers to keep them going for the long haul.

God bless. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

April 26, 2007 Annie is back in the hospital

Today while at Children's for blood work Annie had a couple of dizzy episodes followed by a siezure. She is being admitted back into the hospital. More later. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

April 24, 2007 A Visit from Aunt Kris

Aunt Kris came from Montana last Thursday to spend the weekend with us. She went home this Monday. It was a great visit. Aunt Kris and Annie spent a lot of time together, visiting, taking walks, hot tubbing, laughing, reading. It was a great splash of sunshine for all of us. Thanks, Kris.

It has been over a week since our last update. It has been a week of some ups and some downs, more up than down. The doctors continue to tinker with the medications with a mix of some improvements and a few side effects. The biggest challange last week has been pressure. It was running in the 140s to the 180s 10 days ago, so the pressure medicine was increased. It helped bring the pressure to the 120 to 140 range, but also made Annie very tired. She would get up in the morning and take her meds, and within an hour she would be very tired and would lay down and often sleep till 2 or 3 in the afternoon. And when she is sleeping so much it is really tough to get 3,000 calories. The pressure medicine has been changed twice since then, mixed results, a little bit more energy, but a bit higher pressure. Hopefully we are circling in on the right combination.

Ten days ago the big challange was to gain weight, to get a lot of calories every day. The good news is she is gaining weight, about 4 pounds since she started this campaign.

Her biggest pain issue is with her feet. It seems like the nerves in her feet may have been damaged during her surgery, or from medications. It feels like a fairly severe frost bite. So her feet ache most of the day and night. The only relief is rubbing and messaging her feet. Tylenol does not cut the pain. So we rub, we massage, and Annie keeps on keeping on. It will probably take a few months for this to resolve itself, but Annie has a great spirit, she is a tough cookie!

This week we have joined so many of you to offer our prayers up for baby Emma and her parents David and Lenni. Emma was born last week at only 25 weeks term. A 1-pound angel! Just a couple of days ago Emma was transfered to Children's hospital for an emergency surgery on her bowel. Her surgeon, Dr. Healey! the same one who did Annie's transplant. He is so much our hero. Emma is now in the infant intensive care unit at Children's, right next door to the pediatric intensive care unit where Annie spent 10 days. Jane and Annie stopped by this afternoon to see David, Lenni, and baby Emma. I ask all of you to focus your prayers for Emma and family. Let's storm heaven for them.

God bless each and every one of you. Thank you so much for lifting Annie up in prayers over the past month, months, years! Know that your prayers have been answered. God is so good. And thank you for joining us in praying for Emma.

Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

4/19 Living Legacy Luncheon

A few of Annie's friends stood for this photo with Dr. Healey at the Living Legacy Luncheon today at the Westin Hotel in Seattle. Dr. Healey is the surgeon/hero who was the lead surgeon for Annie's liver transplant. It was nice for the girls to meet the hero that did so much for Annie and all of us. Please continue to pray for Annie and her family as she continues her journey of healing.

4/15/2007 She did it

3,400+ calories on Saturday, 1,200 more by 9 am Sunday! With a mind of her own and quiet determination she is showing us (and the doctors) she can get all the calories she needs without a NG tube. Way to go Annie!

May you all have a blessed Divine Mercy Sunday. "Jesus, I Trust In You" Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

4/14/2007 Home Again!

Last night (Friday) Annie came home again from the hospital. She was admitted on Thursday night because of weight loss and blood pressure issues. With some medication changes there has been good progress on the blood pressure.

In order to help her gain some weight back the doctors had a feeding tube put in Annie. It goes through the nose and down the throat into the stomach - it was rather tramatic putting it in, and the nurses said Annie was one of the best they have had for the proceedure! The plan was to run a pump for 10 hours each night that would deliver about 1,000 calories to her stomach, with her getting another 2,000 calories during the day on her own.

However Annie was not happy with the tube. It hurt her throat, it hurt to swallow, and it hurt to talk. She insisted that she could get all the calories she needed on her own if they would only give her a chance. She spoke to the nurses and they said she would need to keep it in for a few weeks. She then spoke with the transplant team and told them she wanted the tube out and she would do it on her own. They said she needed to keep it in. Then she spoke with the main transplant doctor and he said she needed to keep it in. The all told her that she was at a critical state and needed 3,000 calories every day. They also said that they could only recommend, and that the final choice was Annie's.

Annie was frustrated that they would not give her a chance. So talking with her parents she came up with her own plan. She would come home Friday night, run the feeding over night, and then pull the tube Saturday morning. She would prove Saturday that she could get 3,000 calories on her own by 10 PM, or she would return to the hospital as an outpatient to have it re-installed immediatly. Then she met with the transplant nutritionist on Friday afternoon and came up with a nutrition plan for her to do on her own. The nutritionist was very encouraging, and sent her home with all kinds of nutrition supplements and super calorie drinks.

So this morning at 7 AM the tube came out. And as soon as it did Annie lit up with the biggest smile. She said "I can swallow". And then she immediatly drank a nutrition drink - she said "Dad, this is my beer" and she gulped it down in a couple of minutes. It is now about 11 AM and she is doing great, she is ahead of schedule on her calorie intake. She is determined to show the doctors that she can do this on her own. She will have to keep this up for a few weeks to build back her weight and her strength, and she is determined to do it.

God bless you all. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

4/12/2007 And one step back

Annie went to see her doctor at Children's today, and based on several factors she is being admitted back into the hospital tonight for an overnight stay, and hopefully back home tomorrow. They need to run some IV medications, change some other medications, and add a feeding tube in her nose. She continues to loose weight, down to 98 pounds. The feeding tube will be used to supplement her nutrition at night - it could be in for a month or so.

Annie is dissapointed, but strong! She is an amazing person. She teaches me about life every day and is a real blessing. Thank you all for your support and prayer. God Bless. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

4/9/2007 Annie is Home!

This afternoon Annie came home from the hospital, discharged after a 26 day stay! She is so glad to be home, and we are so glad to be home with her. Tonight she will sleep in her own bed, we will all sleep in our own beds. Life's simple pleasures!

It has been a difficult month, a path we could not have traveled without all of your support, your love, and your prayers. We shall forever be greatful.

Today Annie asked the Transplant team when she could start to be with her friends, when could she go to life teen, when could she go out shopping, when could she go out to eat. She asked how long it would be before she could give her friends a big hug. They replied that NOW IS THE TIME for her to get back to her life. That she can hang out with her friends, give them hugs and hold thier hands, she can go out to eat and shopping, go to Mass and Life Teen and even go to school. What great news.

They said that the most common way for her to catch a cold or flu would be for her to touch a door handle or object that someone had touched who had a cold, and then touch that hand to her nose or her mouth. It is much less likely that she couild get a cold from hugging a friend, as long as they did not sneeze or cough in her face. So they told Annie they want her to get back to her life now, and that the most important thing for her to do is to continually keep her hands clean with Purell, and to ask all visitors to the house to clean thier hands with Purell as they come in the door. And they told us to ask those who are sick to not visit until they are feeling better.

So as Annie gets her strength back, she will look forward to going out, to seeing her friends, to get back into the groove. In the near term she is weak and has a lot of rebuilding to do - she lost over 20 pounds, can't walk but a short distance. She is getting her appetite back, eating more, drinking more, and smiling a lot more.

It is so good to be home. Thank you, Thank you, Thank you. And God bless you all.

Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

04/08 HAPPY Easter!

The Easter bunny came to visit Annie today:) Annie also gets to go home today for about 5 hours to enjoy Easter with her family.
Shown in the picture is Annie's nurse, Annaelise who we found out earlier in the week is the Granddaughter of Annie's Grandma's best friend! It's wonderful how Annie continues to bring us close together through God's amazing grace.
Have a wonderful & blessed Easter!

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

04/07 Annie at home today

For 4 hours, like Paul said, Annie got to go home today...and boy did she! Annie, ya look like a million bucks and we love you!

"Trust in the Lord with all your heart, on your own intelligence rely not. In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

4/7/2007 noon update

Annie continues to struggle with the effects of the many medicines. Last night was difficult for several hours, with a lot of pain, nausea, and some confusion. She got some sleep starting about midnight. She is feeling better today, but she is a bit tired today. Dr Healy was in this morning at 7:30 checking on her status - he is a great doctor. He said she could have a pass to go home this afternoon for a bit so we are working on putting that together now. I know a lot of you would love to come over and see Annie today, but we want to keep the day low key and ask you to hold off coming over today. Annie needs some rest today.

We are hopefull to make progress over the next few days, and hopefully get her home early in the week. It does not look like she will get discharged on Easter as we hoped yesterday.

Thank you for all of your love, support, and prayers. May you all have a blessed Easter. He is Risen! And in rising he has restored our life! God Bless.

Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

4/6/2007 11am update

After a week of lots of ups and downs, Annie is finally doing much better. Her liver tests continue in the good direction, coming down each day. And the siezure medicine is working. Yesteday Annie was able to go outside and soak in the sun and while there she said she has not fell this well in over a year!

Today her morning meds included 20 pills, two liquids, and an IV medicine. It is a lot of medicines to ballance but it looks like they are getting close. Before she can go home she has to know all of her meds and pass a quiz showing she knows them all - can't get away from school.

Today Dr. Healy, the transplat surgeon came in and he was pleased with her progress. He took the stitches out today. He said some of the near term goals are getting enough intake of calories and liquids. She got very close yesterday, and we hope she will meet the goals today. He said he hopes she can go home in the next few days.

The nurse that was in with Dr. Healy today was wearing a vest with a "Donate Life" logo on the back. We showed her and Dr. Healy the art work for the T shirt - they liked it. They said that this month is "Donate Life" month, so the T shirts are timed perfectly.

Last night Annie and I went down to the ICU unit to visit with a couple of the nurses who took care of her after her transplant. We got to see Amanda and Wendy, it was great. We got pictures with both. Today she is going to see if she can see any of her day shift nurses from ICU.

We continue to feel blessed and are greatful for all of your support and prayers. May you have a blessed Good Friday and a joyful Easter.

Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

Annie Effect T-Shirts

T-Shirts for Annie!
Show your love and support for Annie by wearing a t-shirt designed to honor Annie and her journey of carrying a cross of prayer and suffering with amazing grace. The cost is $10.00.
By purchasing a t-shirt, you will give Annie the opportunity to give back a portion of the cost of the shirt, plus any additional contribution you may choose, to The Living Legacy Foundation and Children's Hospital.
The words on the cross say, Prayer. Grace. Love. Life. This is the Annie Effect that has touched people around the world. Buy a shirt and wear it to visit Annie or take a picture that can be hung up in her hospital room.
She'll absolutely love it! Let's show Annie how much we love her and spread the good news of the Annie Effect and God's Amazing Grace. Click on the link to find out more information and order your t-shirt today.

www.creationmarketing.com

4/5 Annie's Witness

Dear Friends of Annie:

Below is the text of a talk Annie gave to her friends in preparation for an upcoming high school church retreat. Annie was asked to give a talk on prayer. Just as Annie finished reading this reflection to her friends prior to the retreat, her family received the call they had been waiting for, the call stating that a donor match had been made for Annie.

As we enter into Holy Thursday and Good Friday, this reflection by Annie speaks of her deep faith as well as her total submission to God's will.

Annie Fuglevand
Excel talk # 3
March 11, 2007

When I was born, I was diagnosed with a disease called Alagille syndrome. This disease affected my heart, kidneys, and liver. My heart valve didn’t work right so when I was just over a year old I had a surgery to repair it. When the doctors did that they also discovered that the arteries going from my heart to my lungs were constricted. So over the past 15 years I have had several surgeries to attempt to improve my flow. Just this past September, while I was in the hospital with liver problems, they did a more aggressive procedure and for the first time I had near normal flow from my heart. That heart procedure was a bit of a miracle, because if it had not been successful I would not have been eligible for a liver transplant.

My liver has caused me the most problems since I was born. Because it has not functioned normally, I have had brittle bones, been constantly itchy, tired, run down, and I had trouble growing. I had scabs all over my body from the itching. And I had these bumps or deformations on my elbows. I have yellow skin and yellow eyes from the bile that is in my liver. I remember when I went to kindergarten when I was 5, and was worried that the kids were going to make fun for the yellow skin and eyes, for the scabs and the bumps, and that they would not accept me. That is another great story – the kids and teachers at Holy Family were very understanding and supportive. The love I felt there was amazing. I had such great friends and teachers, and I felt so accepted and loved.

About a year ago my liver really started to shut down. I started being more tired and run down, and by last September I was unable to go to school I was so tired. I ended up in the hospital a couple of times in September and October. I only went to Bishop Blanchet a couple of days in September and since then I have been home. I was heartbroken that I wasn’t going to be able to go back to school and finish my senior year. But I knew in my heart that God had a plan for me, I don’t know what it is, but I trust that it will be for the greater good. Knowing that helps me when I realize I can’t go back to high school.

Right now I am on a waiting list for a liver transplant. In order to get better I need a new liver because there is nothing the doctors can do to repair mine.

One thing I have done since I was a little is to pray. You might find this a bit funny, but I have not really prayed to God for my own healing. It didn’t seem right for me to pray for myself because I thought it would be selfish. I saw more people that I thought needed the prayer more than me. I learned very young I could offer up my prayer and my suffering for others. For example, when I was in 2nd grade I had to start taking shots. Initially it was twice a week, and then it was every day. The shots hurt me a lot and I remember how painful they were. Then I started offering up my shots for others in need. Each night before my shot I would say a prayer and then offer it up for someone in need. Offering up my shots didn’t take away the pain or the fear, but it did help me to bring some good out of it. I believe that offering up my pain to God was a strong and helpful prayer for others.

Now that I have been cooped up at home since last September, I offer up every day for people in need. I have offered it up for my family members and friends. And it seems that the more I pray for them the more people I see who are in need of prayer.

I have learned that God can use everything for the good, even sickness. I am actually grateful for the struggles because it has brought so much good in my life. I have been surrounded by some really great friends and supported by their love,

Being sick all my life, it would be easy to think that I would become depressed and down. But that is not the case. I have much joy and peace and I am filled with happiness. I have strength to continue on each day. I know this is all a gift from God, a grace. I have felt God in my life from when I was very young. I have experienced many small miracles where he has touched my life and healed me physically or given me peace, joy and strength in the midst of struggles. God has been at my side and is still at my side.

All of us have struggles in our lives. It is not always poor health like I have had. It might be struggles within your family, it might be personal addictions, or it might be worries over someone close to you. But it is important to know that God is by your side just like he has been by my side. I have found that I need to trust God; I need to turn to him in prayer in order to be able to know that he is by my side. I think God wants us to turn to him in our troubles; he wants us to take a step towards him through prayer. And when we do take a little step towards God, he takes a big step towards us and picks us up and holds us in his arms and blesses us with his grace.

If I could give you any advice it would be this. Turn to God. Reach out to him in prayer. Share your troubles with Him. And trust him that he will help you. And don’t be disappointed if he doesn’t answer you the way you want. In the long run his answer will be better than you could have asked for. If he had healed me completely when I was two years old, or ten years old, I would not be the person I am today. I would not be as close to him, I would not be filled with so many of his gifts. I am ever so grateful to God for all he as done for me. And I know that what he wants for me is good, I just have to learn to put my trust in him and I know he will take care of me.

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

4/2 ~Holy week

Dear Friends:

Annie's healing thus far is miraculous, but there is still a need of healing for Annie. In talking with Paul a short time ago, Annie's neurological condition remains in need of our prayer. Her condition is very complicated and Paul is worried about Annie's slow response. I wish I had more specific information, but as we have seen before with Annie, it is all a delicate balance.

So friends, as we begin our this week, Holy week, let us turn to God the Father who knows and loves Annie and her family so deeply. This has been a tough road these past weeks for Paul, Jane, and Ben. Let us ask Our Lord to draw near to them, to sustain them as they continue to love and care for Annie.

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

4/1/2007 Sunday afternoon

After another nurological episode last night about 8 pm, Annie has been stable since and doing well. She had a good night's sleep, and has been up much of the day. We spoke to a doctor this morning and it sounds like blood work indicates that her liver continues to recover from the rejection episode. They have changed her medications again, all part of a fairly complicated process to achieve a balance between the benifits and side effects of some powerful drugs. We understand this is all part of the post-transplant process. From the sounds of it, Annie will be in the hospital most of this week. We hope that she can be home by Easter, but we undersand we have to be patient right now.

We continue to feel very good about the medical care at Childrens, and are forever greatful for your prayers and support.

God Bless. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6

3/30/2007 evening update

Annie is stable, alert, and back in her hospital room. The Blue Angel is here with us, and we feel the peace of God. Thanks for your prayers. Paul

"Trust in the Lord with all your heart, on your own intelligence rely not.
In all your ways be mindful of him, and He will make straight your paths."
-Proverbs 3:5-6