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Saturday, February 13, 2010 10:18 PM CST

Marisa is doing fantastic! Labs this weekend were perfect! We leave on Wednesday (Feb 17th) for her Wish Trip! She is so excited. Wednesday is also her 7th birthday. She can't believe that she is going to Disney World for her birthday! We'll be updating with pictures and journal entries while we're gone. We are very excited about this trip. It will be a wonderful way to celebrate Marisa's life. Thank you for all of your prayers and the love that you have always shown our family.

Thursday, November 5, 2009 5:30 PM EST

Where to begin?

Exactly 5 years ago this very minute (5:30 pm EST) they were taking 21 month old Marisa from our arms and wheeling her into the OR for her liver transplant.

We got the call early that morning that they had a liver that was going to be hers. After waiting an entire year wondering if "this is it" every time the phone rang, it was finally her time. I cannot tell you the peace that was upon my mind and heart that entire day. I was never scared or worried. I knew that God had waited until the perfect moment for her. We were surrounded by family, friends and Church family that evening. We filled the waiting room for 6 hours waiting for the news that our baby had pulled through a very serious and life-saving surgery.

Today is a blessed day for our family. It is also a very sad day for her donor family. We owe this family so much. They gave our baby girl the Gift Of Life. We do not know who the family is. We do not know the name of the child that lost their life that day. What we do know is that we will forever remember the courageous and unselfish act they committed in the midst of their grief. They decided to give others a second chance at life when they lost their little one. Please pray for Marisa's donor family. May they have peace in the knowledge that their child was a hero to our family.

We ask you to please register to be an organ donor. As of today, there are 104,843 people in the United States waiting for a life-saving organ transplant. Give so that others can live.

Today is also the birthday of a special "liver friend". Our friend, Haley Vincent, shared this special day with Marisa. Haley was a very special little girl. She wanted nothing more than to help other sick children. She wrote beautiful music to inspire them to fight through their illnesses. The songs were sometimes funny and sometimes sad. Haley lost her fight with liver disease four years ago. She did not receive a liver transplant in time to save her life. Today would have been her sixteenth birthday and I know her family can use some extra prayers as they miss their little Angel. Angel Haley's Story

Thank you all for supporting us and loving us through the past 6 1/2 years. You have made a tremendous difference in our lives. Our family has felt your prayers and love. Thank you for every card, phone call, email, guestbook entry and hospital visit. When your child is so very sick, you need support. We are very fortunate and blessed to have you all in our lives. We never had a need that wasn't fulfilled. You were always there with a hug and a smile. You will never know how much that meant to us.

Our prayers are that Marisa continues to grow and thrive. While there are never any guarantees for any of us, we trust that God will continue to hold her in His arms.

Marisa is currently waiting for her "Wish" to be granted by Kids Wish Network. You can see her little story here: Marisa's Kids Wish Story

We have run into a little problem with her wish being granted, so we ask that you please pray that the wrinkles get ironed out quickly so that she can continue to plan for her special trip on her 7th birthday (Feb 17th) to Disney World!

May God bless each of you. Thank you again for being part of our lives.

More Pictures of Marisa

***Links to pictures have been fixed (11-9-09). Sorry they didn't work before!

Love,
Shannon

Tuesday, October 27, 2009 8:35 PM CDT

It seems that the Swine Flu has taken up residence in our house. All three kids have symptoms. Jackson's are the worst. He has a 102 fever, severe cough and has thrown up once. Camille has mild symptoms with a low grade fever. Marisa has been coughing for a few days but appears fine otherwise.

We all started on Tamiflu today. Marisa is staying at my parents' house to try to keep her away from the other two. I have been bleaching everything in sight.

Praying that they feel better for the weekend and Halloween.

Saturday, July 18, 2009 8:52 PM CDT

Oh my....it has been SO long since I have updated Marisa's site. I apologize to those who visit looking for updates. I have a feeling though that no one visits any more! I'll have to watch the visit counter to see if anyone is still visiting.

Marisa is doing very well for the most part. She is still very itchy. We just keep trusting and praying that Lord will heal her of this condition in His time. She did have a little scare last week. Her stool turned very pale. I had one of our ministers pray for her and then went to get her labs drawn. Praise God that her labs were good enough to keep her out of the hospital. I know in my heart that it was an answered prayer. Marisa had bile duct issues post-transplant. I am sure that something was going on with her "plumbing" again. I thank God that he hears our prayers and answers them. Her liver function tests were elevated, but so bad that she needed to be admitted for a biopsy or further testing. Her bilirubin was normal. Make no mistake...the Lord's hand was in the matter.

We just returned from a wonderful week at our Church Camp. The kids had a fabulous time. We're exhausted and recovering from the busy week now. It's always a blessing to be with the people of God and get away from the "world" for a while. Allows you time to refocus.

I'll post some new pictures soon. Thanks for visiting. Sign the guestbook! :)

Love,
Shannon

Thursday, April 2, 2009 9:15 AM CDT

Please pray for Aiden... Click here to go to Aiden's website


Made with love by The Heroes Banner Site

April is National Donate Life Month. PLEASE be an organ donor.

Tuesday, February 17, 2009 9:35 AM CST

HAPPY BIRTHDAY, MARISA!!!

Today Marisa turns 6 years old. We thank God for her health and strength.

I'll write a better update later, but for now just wanted to wish our princess a Happy Birthday! We love you so very much.

Tuesday, February 17, 2009 9:35 AM CST

HAPPY BIRTHDAY, MARISA!!!

Today Marisa turns 6 years old. We thank God for her health and strength.

I'll write a better update later, but for now just wanted to wish our princess a Happy Birthday! We love you so very much.

Tuesday, February 17, 2009 9:35 AM CST

HAPPY BIRTHDAY, MARISA!!!

Today Marisa turns 6 years old. We thank God for her health and strength.

I'll write a better update later, but for now just wanted to wish our princess a Happy Birthday! We love you so very much.

Monday, February 2, 2009 2:54 PM CST

I know, I've been neglecting this site too much lately. I'm sorry to those who check in and keep finding the same update.

Marisa is sick again. That darn asthma strikes again. Last week we changed her controller medication from Flovent to Advair. Hopefully it will make a difference. So far, she's still coughing. Today we added prednisone again. I hate this drug. It really makes her crazy, crabby and moody. Hopefully it will help her breathing quickly.

All else seems calm. We've all been fighting colds, sinus infections, ear infections and low grade fevers, but at least we haven't had any serious issues to deal with lately.

Thanks for checking in. I'll try to come back more frequently for updates! :)

P.S. Erin...I had no idea that you made the film that kept our windshield from shattering in my face. THANK YOU! It was a very scary event. XOXO (***See journal history if you have no idea what I'm talking about.)

Friday, January 2, 2009 2:34 PM CST

Wow! It's been a long time since I've updated this site. I'm sorry. Of course, you can always assume that no news is good news with Marisa. She is doing quite well. Her liver is as happy as it has ever been. Labs have pretty much been perfect for over a year. That's a huge blessing.

Asthma is still lurking in the background. I hate asthma. Truly hate it. I feel like it holds her captive. I never know how serious her wheezing is because I don't have the ability to monitor like I would if she was in the hospital. Of course, I don't want her in the hospital, but it would be nice to have a "hosptial grade" SAT monitor. The one I have, I don't really trust. It doesn't seem to give an accurate reading for her.

We've been busy for the past several months. Lots of school activities. Lots of sports. Camille and Marisa played basketball in the fall and Jackson played flag football. We were very busy on Saturdays. No less than 4 games that were overlapping every week. The kids really had fun though. Marisa didn't like playing basketball GAMES. She just wanted to do practice. Most kids are the opposite! In the games, she pretty much just ran back and forth across the court, spun around in circles and danced.

Camille played a very good season. This was her 4th year playing basketball. She has improved a lot and really likes the game. She got a whole lot more aggressive this year. Jackson made a few touchdowns in football this year and he improved a lot as well. The girls are now done and Jackson is in full swing with basktball.

In early December, Marisa got a REAL haircut. She got 7 inches cut off and will be donating the cut part to Children With Hairloss. http://www.childrenwithhairloss.us/ This was a big step for me. When she was tiny and so sick in the NICU, they were running out of IV access. At one point they told me that they may have to shave part of her hair to get access in her head. She had gained so much fluid while in septic shock, the only part of her that we recognized was her hair. I did not want them to even think about shaving it because that was the only part of my baby that I still recognized. Of couse, to save her life they could have done ANYTHING and it would have been fine. They never did have to shave it, but as a result of all of this, I grew very attached to her hair. She only had it trimmed a few times and just a tiny bit each time. It was a big step for ME to let go of her hair and get it cut so short. We are thrilled to be able to give back even a tiny bit to help make some other child happy.






We had a wonderful Christmas. No one was sick! The kids really had fun and have been enjoying all of their new gifts.

A few days after Christmas, we had a close call on the highway. A giant piece of ice flew off a truck and landed on our windshied right in front of me. Frank was driving and I was on the passenger side. It shattered the windshield and broke a hole in the window, but the windshield did not break apart. Thank God for his protection. We could have all been hurt very badly if the windshield had not held together.

Marisa spiked a little fever on New Year's Eve, so she and Frank stayed home while the kids and I went to Church for our annual Watch Night Service and dinner. Thankfully she didn't get any sicker and still seems to be doing fine.

2008 was a year with no hosptial stays, no broken bones, great lab values and lots of blessings. We're looking forward to 2009 being another healthy and happy year in the Hamet Household.

Happy New Year everyone. Sorry for the long update. It was way overdue... :)

Sunday, November 16, 2008

Saturday, November 15, 2008 11:24 PM CST

Well...it has been a LONG couple of weeks.

Marisa is finally feeling better. The coughing has subsided for the most part, but now she's weaning off of prednisone, so she is feeling pretty rotten because of that. She's having very flush cheeks, headaches, etc. Hopefully she'll tolerate the taper though. If not, she goes back to the full dose and we have to figure something else out.

Wednesday, November 5, 2008 6:34 AM CST

Wednesday, November 12, 2008 Update

Marisa is doing a little better. I'm able to go further between breathing treatments. She goes to Pulmonary Clinic this afternoon and I'm going to do my best to get them to reduce the amount of prednisone she's on. She is really a monster on this stuff and they put her on a high dose. She's taking 40 mg/day. Hopefully I can cut that in half. Her immune system is way too suppressed on that dose. I haven't been able to take her in public. Too risky for her to catch something else. Hopefully she'll go back to school on Monday. By then she should be completely off it. I will fill you in on what the doc says later this afternoon.

Monday, November 10, 2008
I took her in for a chest x-ray this morning. Thankfully it came back normal. No pneumonia. She's on this crazy prednisone though. She's going out of her mind.

Note the song playing. It was written by Angel Haley. She captured the side effects of prednisone perfectly. We miss you, Haley. Click on the button below to go to the Haley Vincent Foundation website. Click on Haley's Songs to listen to the rest of her "liver songs". She was quite a talented young lady.




Sunday, November 9, 2008 update:

I paged the pulmonologist this morning. She told me to keep up with the breathing treatments every 4 hours. I can do them as close as every 3 hours, but she shouldn't go any closer than that without being monitored in the hospital. She called in a script for prednisolone so hopefully it will kick in here quick and calm down the wheezing. She took it about 2 hours ago. The doc told me that if she is the same or worse by 10:00 this evening to go into the ER and have her evaluated.

I can tell you that the judging by her crazy behavior...the prednisone is fully in her system. Hopefully it will find its way into her lungs here pretty quick. She's taking 20 mg of prednisolone twice/daily.

Note the song playing.... Angel Haley captured the mood of a child on prednisone perfectly! Follow the link above to visit the Haley Vincent Foundation and hear more of Haley's "liver" songs.

Saturday, November 8, 2008 Update

Marisa is really sick...

Of course, right after I leave a happy update, she gets sick.

Thursday evening she started coughing some. Did not have a fever, just a bit of a cough. She has asthma, so I chalked it up to that and had her sleep with me so that I could listen to her all night. She coughed all night and woke up with a 101 temp. I was scheduled to work, so my mom was able to come get her and take her to work with her for the day. She was able to rest some at the office with Grammy, but when I called for the third time to check on her, mom said she wasn't doing well. I called the pediatrician and was able to get her in as the last appointment of the day. I love Dr. Zara. He NEVER turns Marisa away even when it's after closing on a Friday evening. My mom brought Marisa and met Frank at the office and I got there shortly after they did. Her temp was 104! Holy Cow!! Frank called me to tell me as I was pulling in the parking lot. Needless to say, I ran into the office. We think that may have been a false high, but the lowest she got it to read was 103, so it wasn't that far off.

He said she was wheezing real bad, but he couldn't hear any fluid. The fever with the wheezing worried him though so he put her on an antibiotic and said if it got worse over the weekend to go out to U of M and go through the ER. She punked right out when we got home and was rather lethargic. She was coughing so hard that she threw up her meds 10 minutes after I gave them to her. I had to give them all over again. I started packing for the hospital and kept taking her temp. Even with Tylenol, the lowest I could get it to go was 101.5. At about 1:30 this morning, she started "not coughing". It was very strange. She was trying to cough but couldn't. I think her airway was so tight that she couldn't get the air in her to cough. It scared me. This was only one hour or so after her last breathing treatment. She was refusing her nebulizer treatment at this point (I was waking her up to give it to her and she wanted nothing to do with it). So I quickly gave her 3 puffs of albuterol with her inhaler/spacer. She's only supposed to get 2 puffs, but I broke the rules and gave her three. That "non cough" was freaking me out. She wasn't turning blue and was still breathing OK or I would have been calling 911. If I had been able to check her pulse-ox, I'm sure it would have been too low. I got the van started to warm it up because it's FREEZING here. She fell right back asleep and her breathing evened out. I decided to hold off on the ER unless she had another "non cough" episode because she seemed to be doing so much better so quickly. She stayed asleep and did not cough all night. I know this because I pretty much stayed awake all night listening to her breathe next to me. This morning, her fever was down to 99.5 and it hasn't gotten any higher all day. This has been the strangest thing. My gut tells me that it's pneumonia, but the antibiotic she's on will cover it if it's bacterial.

She has been better all day, but still is pretty sick. She's been getting nebulizer treatments every 4 hours all day and hasn't had another bad breathing episode. I'm still packed and ready to go to the ER if she takes a turn for the worse at all, but I'm really glad that I held off last night. Her fever hasn't gone back above 100 and the breathing treatments have been lasting 3 1/2 to 4 hours. She would have been exposed to so many other germs in the ER. She's getting an antibiotic and I know she's not dehydrated, so I think we can continue to treat at home unless she gets worse. She also has her regular appointment with her pulmonologist on Wed. so at least she'll get a good re-check.

If you're still reading, I apologize for being long winded. It's been a LONG 36 hours and I'm beat.

I'm praying that she doesn't get any worse and can stay out of the hospital. She's gone almost 3 years without an inpatient stay...I'd like to keep that going!


Wednesday, November 5, 2008
It's been a while since we've done an update on Marisa. I thought today would be a good day to do it. 4 years ago today, she was given the gift of life. She is doing amazingly well. She's down to just her Prograf and asthma meds. Clinic visits are once every 6 months and labs are once every two months. We could not ask for more stable labs. I thank God for bringing her so far from that tiny bed in the NICU where she literally fought for her life 5 1/2 years ago. We are so thankful to her donor family for making the decision to donate their child's organs. They are in my prayers today. Thank you all for taking this journey with us and making it feel less lonely than it would have without you.



Today is also Angel Haley's birthday. Please say a prayer for her family today. www.caringbridge.org/ga/haley

Monday, October 13, 2008 8:49 PM CDT

PLEASE...pray for Emerson.

http://www.cotaforemersonw.com/node/35

Tuesday, September 23, 2008 5:38 PM CDT

I don't know the details, but one of our "liver friends" lost their fight sometime in the past 24 hours. Little Gavin is now in the arms of Jesus. Please pray for his family.

CLICK HERE TO GO TO GAVIN'S WEBSITE

Each time I hear of a child dying from liver disease (or any cause of death actually), I physically feel sick. It brings back so many horrible memories of Marisa in the NICU and so close to death herself. I hate Liver Disease. Hug your children today and tell them how much you love them. You just never know what tomorrow holds. I've known far too many families who have lost their children. Please pray for them. Surely, their wounds will never completely heal.

Monday, September 15, 2008 8:18 PM CDT

Thought you'd be interested to hear that I attended my very first EVER political rally (can you believe that? I've been married to Frank for 12 years and have thus far avoided them!). Joe Biden was here in our home town of Flat Rock this evening. We celebrated Camille's birthday in the VIP seating (Frank is Vice President of the School Board...I guess that makes us VIPs) right behind the guest of honor (actually about 10 rows up, but still very close). Marisa proudly waved her "Change We Need" sign for 30 minutes! Haven't seen the news yet, but you may catch a glimpse of us if you watch. Camille and Jackson tried their hardest to get on camera. We sat in the top row.

Frank wanted to wear a Sarah Palin shirt under his jacket, but he behaved himself. He did sit there and spit sunflower seeds the entire time, but at least he remained orderly and the Secret Service didn't have to kick him out.

It was interesting. Never thought I'd see the bomb squad, a gazillion undercover agents (all wearing dark sunglasses by the way! Don't they know that we KNOW who they are?) and Secret Service swarming the school grounds where my kids will go to high school. Never thought I'd see sniper agents (did not see the guns...just the men) staked out on the roof of the High School a block from my house in our teeny tiny little town. Can't say that I'm geeked to go to any more rally's...but hey... it was free, we walked there from our house, and after all, we were VIPs! :)

Just had to share....

Shannon (not gonna vote for Obama OR McCain) Hamet

Saturday, July 26, 2008 9:58 PM CDT

Not much to report. Thankfully, things are going well. She is still quite itchy, but other than that, things are good. I gave up on the photo therapy. After 37 treatments, 2800 miles on my van, and probably $1200 worth of gas, it wasn't helping. She goes back to the dermatologist on Monday. Hopefully he'll have another thought. I'm doubting it though. Please continue to pray that it just goes away and she is able to have relief.

Thursday, July 17, 2008 11:15 AM CDT

UPDATE: Our friend, Gloria (mentioned below) passed away early this morning (Friday, July 18th). Please keep her family in your prayers.

Just a quick update on Marisa. She is doing the same. Still itchy. Still no answers. Still no relief.

The good news: She had labs drawn yesterday and they were ALL PERFECT. Not one number was off even a little. All were in the normal range. Thank God! This was our first time going 8 weeks between blood draws and I admit that I was a bit nervous.

We're asking you to please pray for a friend of our family. Her name is Gloria and she is in very critical condition at this time. She went into the hospital for surgery to repair an aneurism on Tuesday and barely survived the surgery. She is in the ICU at U of M. It has been touch and go, but currently they are using last resort measures to save her. She's on an oscillator and ECMO machine and they have had to start dialysis. It doesn't sound good. Prayers for Gloria and her children, Ryan and Nicole, along with her grandchildren would be appreciated. My guess is that she's in her mid-sixties. She is one of Frank's mom's best friends and she's taking this very hard as well.

Thanks,
Shannon & Frank

Saturday, June 28, 2008 7:01 AM CDT

I don't really have an update today. I think maybe some of you are tired of seeing the same journal entry here for several weeks though. I stole the following article from Aiden's guestbook. Although I don't consider Marisa to have a "disability"...it does sum up things pretty well.

--------------------------
SOME MOTHERS GET BABIES WITH SOMETHING MORE...My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said.

Mothers lie.Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away.It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.

The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

-Lori Borgman is a newspaper columnist and author

Saturday, June 7, 2008 7:52 AM CDT

Well, it hasn't been a great week. Could have been much worse, but I wish it had been better.

It's just this darn itching. I hit brick wall after brick wall. No one has any answers for me. Nothing helps. I just don't know where to turn next.

On Friday, I took her to an allergist at U of M for a second opinion. Marisa was so completely off the wall that I couldn't believe my eyes. She was literally bouncing off the walls and acting like I've never seen her act in my life. It was horrible...running out of the exam room, jumping off the exam table, you name it. She pushed every button I have and she pushed them at least 20 times each. (She was only doing this when the doctor was in the room...not when it was just the two of us) She kept interrupting me while I was trying to talk to the doc, asked a million times "Can we go home, now?" It was VERY difficult. If I didn't know better, I would have thought she was on prednisone. It was that bad.

The doctor proceeded to tell me that she thinks Marisa has "gotten away with a lot of stuff" because of her health for the past 5 years and she believes it's not really itching...she thinks it's behavioral. I lost it. I was crying and so upset that she would make that judgment after having seen Marisa for only 5 minutes. She made a judgment of my parenting abilities and Marisa's everyday behavior based on 5 minutes of crazy behavior. Of course, she didn't believe me when I told her that she doesn't usually act that way... It was just very bad. She made me feel like a horrible mother. She did do allergy testing and everything came back negative. (I'm thankful for that.) Let me say that the doctor wasn't mean, rude or condescending to me. She was nice and even offered to hug me when I was so upset. (Of course, I didn't want her near me.) I just don't think she got a clear picture about who Marisa really is. Later that night, once I was able to think clearly, Marisa's behavior made sense to me. She is a child who knows what happens in Dr. offices. She knows it's not usually pleasant. She knows pokes and prods happen. She doesn't like it. She was trying to distract me from talking to the doctor so that it wouldn't happen. This is why she kept asking to go home. Here she was in a new doctor's office that she had never been in before and she didn't know what was going to happen to her there. She was nervous about what was going to happen to her. And what came after I talked to the doctor? Pokes. If you've never had it done, allergy testing it not pleasant. They poke your skin with plastic "pokers" that have liquid allergens on the end of them. I really can't blame her for wanting to get out of it. I admit that I wanted to wring her little neck for that behavior, but I really can't blame her. I cried for hours after that appointment. It just hurt so bad that I KNOW there is something wrong and we can't find an answer. I only want to help Marisa and I just don't know how. The itching is not behavioral. She does not do this for attention. She does not get "rewarded" for being sick. She doesn't get special treats for going to the doctor, getting pokes, getting blood draws, shots, or anything else related to her health. She takes nasty medication that she doesn't like. She knows that if she doesn't feel good...more meds come along. She does not WANT to itch so that she can get something. This is not behavioral. We've made very big efforts in order for her to understand that doctors, blood draws, shots, medications, etc. are all just part of her life. No special treatment comes with them. We've made it as much a part of her "normal" life as possible. There is no reward for her when she doesn't feel good.

The biggest thing is that Dr. Lopez (Marisa's liver doctor)said in his last transcription that he thinks it may be a psychotic thing too. Although he thinks that her mind may really think she's itching and this doctor said she thinks it's for attention. BIG DIFFERENCE. I can sort of go with his thoughts and maybe there is a component of this in her itching but I won't go with it until everything else is ruled out. I refuse to believe what this allergist says. She read his report before she saw Marisa. I know she did because I saw her with it (I have a copy myself, so I know what it was). She didn't give Marisa a fair exam. She just made a judgment based on 5 minutes of her going nuts and a little blip on a transcription that mentioned psychosis as a possibility. She ruled out allergies, but she didn't think further and help me figure out what may be the cause.

I was very disappointed.

So...probably more than you asked for when you came here, but that's what is going on with her. Sorry for the vent. I think I needed to get it out.

Thanks for the concern and prayers.
Shannon

Friday, May 23, 2008 7:20 PM CDT

Marisa graduated from preschool yesterday! Here are a few pictures and a little video of her singing songs with her class. My camera would not stay in focus, so the video is a bit fuzzy at times...sorry about that!

The class wore caps and gowns...but the caps fell off of everyone, so they are just in their gowns here.

She had an exciting day!

Wednesday, May 21, 2008 4:08 PM CDT

Thanks for checking in.

Marisa is the same. Still VERY itchy. Still no answers. She's been through 5 weeks of phototherapy with no improvement. They expect improvement between 5 & 10 weeks. I'm getting discouraged. There's nothing I can do to help her. Please pray that this will just go away. She is so miserable all the time. She's not the happy little girl she always was anymore. Now she's cranky all the time and she can't sleep well. Your prayers are appreciated.

On a happy note...tomorrow is her preschool graduation. I can't believe that she will be in kindergarten next year. I'll post pictures after the big event!

Have a great day.
Shannon

Thursday, May 1, 2008 12:15 AM CDT

Today is the 5 year anniversary of Marisa's kasai (her first liver surgery). We almost lost her after the surgery when she went into septic shock. She spent a month in the NICU and fought her way back to us.

I want to thank God for all that He has done for Marisa in the past 5 years. She is a precious gift that He has trusted us with.

Thank you all for helping us through this journey. We're happy to report that except for the itching, she is doing amazingly well. God has blessed her with a very happy and mostly "normal" life.

Saturday, April 26th, 2008 3:30pm Eastern Time

I have been very frustrated lately because I can't help Marisa with her itching. I honestly feel like I'm failing her somehow. I was reminded today of the Serenity Prayer.

"God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference."

Thank you, Peter, for helping me to put it into perspective. All things are in God's hands and I just need to trust Him to take care of Marisa as he has always done.

Marisa has had three phototherapy sessions so far. (See below for more info if you missed the last couple of updates). The first one lasted 10 seconds. The second one lasted 15 seconds. The third one lasted 17 seconds. That's right...a 45 minute drive (one way) for a quarter of a MINUTE! So far she's not getting any relief. We didn't expect any this soon though. They said it could be a few weeks. They are very gradually building up the time. I think the longest she will be in there is one minute. She's doing great though. I'm proud of her. Please continue to pray the she gets the relief she needs.

Love,
Shannon

Friday, April 18, 2008 2:30 pm UPDATE:
Not an answer...but a possible solution.

Basically, Dermatology didn't know what was causing the itching. Since she doesn't have a rash or anything on her skin, there isn't any creams, etc. that we could try. The one option they feel that we have left is phototherapy. So, we'll give it a shot. She'll have to go out to U of M three times/week to start with and will have the light therapy for about a minute each time. Within a few weeks we should see improvement. Now we just need to pray that it works....


9:30 am
For those who don't know, Marisa has had extreme itching (head-to-toe) for about 6 months now. We've been to 4 doctors, had bloodwork, had skin allergy testing, have tried several medications and just can't find a source or a solution. She has no rash, just severe itching. The good thing is that it's not her liver (as far as we can tell). Those labs are perfect. They ran extra labs too in order to check her other organs. Everything looks great.

This week her liver team put in a referral to dermatology at U of M. They worked her in very quickly. That appointment is this morning at 11:00. I know this is late notice, but for those of you that see this message today, will you please say a prayer that we find an answer. Marisa has been through so much in her little life. She deals with this itching constantly. It really bothers her.

Your prayers have brought miracles in her life before and we could use another one now.

Love,
Shannon






The Boston Marathon is MONDAY! Marisa is matched with four runners this year in the Patient Match Program. These dedicated runners not only train for the marathon, but they raise tons of money for the American Liver Foundation. We are honored that they have chosen to support a cause so near and dear to our hearts.

Meet two of our runners!

Steve Guidaboni
http://www.active.com:80/donate/liverteam08/guido"


Megan Marfione
http://www.active.com/donate/liverteam08/alfMMarfio"



Please visit their fundraising pages and help them reach their goals. Even a small donation of a few dollars makes a difference.