Mario had labs drawn last night and the results look great. This is fantastic news since we removed one of his immunosuppressants 2 weeks ago. We're very pleased to have one major medication taken off the list. All the best to you and wishing you a very happy 2009!

Merry Christmas Eve all...it just KEEPS on snowing here

Mario eating an ice cicle (spell?)

Finally got our snow today...

Mario had a great appt today. He's over 27 pounds now! He continues to have good liver function and we were able to discontinue one of his immunosuppresant medications. Coming off medicine is such a treat...the list just gets shorter, we love that! But the other great news is that he doesn't have to go back to clinic until March! A 3 month pass from seeing the doctors. We do need to visit the lab a few times in between but it is still progress! Hope you are all staying warm this holiday season...it is VERY cold here in the Seattle area. Our thermometer said 12 degrees this morning...brrrrrrrr :)

Mario fell asleep in the chair while eating a cookie yesterday...

Mario, new haircut

And his Wallabies jersey for the Aussies.

Playing with trains under the Christmas tree...

More photos...

This one cracks me up:

Some more photos from our trip to Mexico (there are more of Eva on her site too)

Naked in Mexico

Best LFT's EVER from labs last night

WOOHOO Mario

This is an example the living legacy foundation sent over from our photo shoot the other day.

All good news for Mario!

Mario's liver function labs were great on Monday (the other good news is they let us switch to evening timed lab draws...so 30 min prior to 8PM meds versus 8AM meds which is MUCH easier to do around work schedule). ANYWHO! Mario's results came back NEGATIVE for EBV and CMV YAY - CMV was the one he tested positive for a few weeks back. The valcyte seems to have done the trick. We also found that his Tacro level (immunosuppresent) is right where it should be after raising then lowering the dose over the last month. Dr. Horslen thinks this is because Mario's body is finally absorbing it properly. So, good news all around. I think (hope) this means we'll be able to get him off steriods soon - within the next month hopefully.

Last clinic appt, Mario insisted on keeping his rubber boots on(or as Dr. Horslen calls them: "Wellies")...so here he is naked except daiper and wellies. I will have to save this for the high school girlfriend!

Photos from the Donor Awareness event Mario did in August

Dr. Reyes is the man standing next to them...he's the head of the liver and intestine transplant program and one of the surgeons who did Mario's transplant.

More Mario Awareness...

We're going to meet a photographer from the Living Legacy Foundation on Wednesday for a family photo. Mario's story might be used in a local brochure (including a Spanish version) and on their web-site. Mario's story will help raise awareness about the importance of be an organ donor...

Donate Life. Done Vida.

Mario fun...

labs this am, clinic tmrw

Nice quick easy lab draw this morning...much improved from last time. We have clinic tmrw afternoon so we'll have a doc update then. Meanwhile, Mario is doing well, moving around a lot and being more like a big boy every day. Our latest big step last week: No more bottle except for bedtime!

Well Mario's CMV level dropped to 430 from 1400. I'm still trying to figure out what those numbers/levels translate to...but down is good.

3 pokes today...blah

Poor Mario had 3 attempts at lab draws this morning with no success. I finally just asked them to do a finger poke and get enough blood for the 2 most important tests. I just hate making him go through that. I usually muscle through, but today was the worst - and one of the really good girls was doing it too so I couldn't even be mad at her. His veins were just not "plump" today I guess.

Oh and the CMV test comes back in 24 hours so I'll have that update tmrw. It was one of the "important" ones.

I posted a link to the right. There is this Olympic Snowboarder Chris Klug who is a Liver tranplant recipient and does lots of PR for UNOS, Organ Donation. I thought it was cool to share - since I love Snowboarding AND liver transplant people :)

Enjoy

Just a quick note to let you all know that Mario has been doing fine with his new antibiotics. He has not have any fever or diarrhea so that is a good sign that the virus isn't going nuts. He gets lab tests done tmrw AM and we hope to see the CMV levels going down. Will keep you posted.

CMV Positive

Well, Mario has tested positive for CMV. You can see what this virus is at this link
http://www.cdc.gov/cmv/
I've read a lot about this and we of course knew that it was a high probability, but still frustrating. Mario will go back on an antibiotic and we'll do another lab draw next week to see if the level goes up or down.

Send him some good thoughts :)

It's official, Mario is WALKING

Here he is with his Superman cape... I'm not sure where the cape came from but as Frazier smartly pointed out yesterday, no good superhero gives up his source.

We had clinic today...labs drawn this morning showed improvement from Friday. So, correcting the dose on his Prograf seemed to be the right thing. We're going to try regular MILK now too...this is HUGE considering the price of the formula he's been taking. Mario now weighs just over TWENTY FIVE pounds and has actually jumped above his normal growth curve (normally-consistently along the 50th percentile). He is also taking as many as 5-6 steps on his own, standing without holding onto something...he's getting to a big boy :)

August 15th

Well, Mario's liver function labs were SLIGHTLY elevated today. Turns out one of his immunosuppressent levels is continueing to trend low. So, we do a little dance, change the dose and go back for labs and clinic on Tuesday. Hopefully that does the trick. Think positive for him :) Yesterday was the 4 month anniversary of his liver transplant. Hugs to all

Check this out!

Savannah is a "Liver Families" friend.

http://bakerella.blogspot.com/2008/07/pops-for-purpose.html

Just a couple photos of Mario playing while we were at a friend's bbq this weekend

Mario Awareness

We're excited to report that Mario has been invited to paricipate in an Organ Donor Awareness event this coming weekend. He'll be one of the "recipient" examples and a shortened version of his photo montage will be played at the event. Here's the press release:

UNITED FOR LIFE: MULTICULTURAL COMMUNITIES HEAR STORIES OF HOPE ABOUT THE GIFT OF LIFE

NATIONAL MINORITY DONOR AWARENESS DAY
AUGUST 2, 2008- MOUNT ZION BAPTIST CHURCH

COMMUNITY MEMBERS, HEALTH MINISTRIES, DONOR FAMILIES, RECIPIENTS AND TRANSPLANT PROFESSIONALS
HONOR MINORITY ORGAN DONORS

Seattle, WA—(July 23, 2008) – People of color make up 20% of the U.S. population yet they comprise 53% of individuals on the national transplant waiting list. On Saturday, August 2, the Living Legacy Foundation, Mount Zion Baptist Church Health Ministry and First A.M.E. Church of Seattle Health Ministry will honor and celebrate the extraordinary gift of organ, eye and tissue donation for National Minority Donor Awareness Day.

During this complimentary community reception and luncheon guests will hear stories of hope and learn about the power to individually and collectively impact this health crisis that disproportionately affects communities of color.

Mary Leitka, sister of Chief Klia of the Hoh Tribe, will share what it means to her that her brother left a legacy for both the next generation and his kidney recipient by being an organ donor. Kelly Sim, wife of organ donor Johnathan Sim, will impart what she has discovered on her journey from honoring her husband’s wish to donate his organs to becoming an advocate for donation. Recipients including Robin Prentice will share their gratitude for the gift while Dr. Jorge Reyes will talk about the extraordinary moment in a lifetime when he can save a child in need.

Chief Klia, who passed away in December 2007, served on the Hoh Tribal Council and presided at numerous tribe events. He was acknowledged as the hereditary chief of the Hoh Tribe and loved to carve canoes. He was part of the Hoh Tribe’s first Tribal Paddle Journey in 1997. “He wasn’t only a chief, but a dad, a grandfather, a brother, a mentor, a teacher. Organ donation was a vision he had of life being continued,” said his sister Mary, who, along with her family, will perform a traditional Paddle Song at Mount Zion in his honor.

Johnathan Sim’s belief in leaving a legacy of value was at the core of his being. He worked for World Vision, an international relief and development organization. Two days into a much-deserved vacation, he developed strange symptoms, keeping him off his feet at home. Within a week, he had a seizure and received emergency surgery. Three days later, he was gone. “He would have wanted nothing more than to leave a legacy of life for others in his last days,” says his wife Kelly. He did this through organ donation.

Robin Prentice, an African American recipient, went to the doctor with what she thought was the flu, but turned out to be pneumonia in both lungs. When she didn’t completely heal, a biopsy of her left lung revealed “Usual Interstitial Lung Disease.” There is no cure and she had to receive a transplant. Robin worked as a social worker for Casey Family Programs for over 12 years, working tirelessly to make an impact on her community. “I feel a tremendous responsibility to my donor and my donor’s family for this wonderful gift of life,” she has said.

“My purpose is to give those children who are alive today due to organ transplantation every chance at a happy, healthy future,” says Dr. Jorge Reyes. Dr. Reyes is currently the Chief of the Division of Transplant Surgery at UW Medical Center and Director of Transplant Programs at Children’s Hospital and Regional Medical Center. He is internationally known for his research and speaks numerous languages, including Spanish and Portuguese.

“It is our honor to recognize the heroic people who support donation, the greatest example of human generosity and kindness,” said AJ Johnson, Diversity Team Co-Chair and Organ Recovery Coordinator for LifeCenter Northwest. “We believe partnerships with the communities we serve are key to saving lives and decreasing the waiting list.”

Sponsored by the Mount Zion Baptist Church Health Ministry and First AME Church of Seattle Health Ministry, this event hopes to raise awareness of the need for organ, tissue and eye donation among all communities. To help members manage their physical, emotional and spiritual health, Mount Zion's Health Ministry staffs qualified nurse practitioners for each worship service, publishes a monthly column in the Zion News on health-related issues, provides cholesterol and diabetes screenings, blood pressure checks, administers first aid, sponsors educational seminars and hosts an annual bone marrow drive. For more information visit: www.mountzion.net. With the African American Health Care Network, the Mary Mahoney Nurses and other entities, First AME Church’s Health Ministry educates church and community members on legislation, policies, procedures and practices that affect the health care of this community. For more information visit: www.fameseattle.org.

LifeCenter Northwest is this region’s federally-designated organ procurement organization. LifeCenter Northwest facilitates the recovery of organs and tissues in Washington, Montana, Alaska, and North Idaho. The Living Legacy Foundation at LifeCenter Northwest is a nonprofit organization which provides accurate information about organ, eye, and tissue donation to the community. By empowering individuals to register their donation wishes, they hope to help the nearly 100,000 people waiting for a transplant. To register your donations wishes, go to www.donatelifetoday.com.

WHO: Multicultural community members, health ministries, donor families, recipients and transplant professionals

WHAT: Living Legacy Foundation / Mount Zion Baptist Church Health Ministry / First AME Church of Seattle Health Ministry host a free and open to the public community reception and luncheon. Door prizes include a flat screen TV and more!

WHEN: Saturday, August 2, noon - 2pm

WHERE: Mount Zion Baptist Church
1634 19th Ave, Seattle, WA 98122

WHY: Honor and celebrate minority donors and learn about the power to individually and collectively impact this health crisis that disproportionately affects communities of color

HOW: MEDIA EVENT NOTE—Media is welcome at the event, and in person interviews will be available following the event at 2:00 pm. To schedule interviews in advance or with questions regarding this event, please contact Jen Bergman at 206-447-1801 -- jen@vendenbergcom.com OR Julie Monica, (206) 595-4183 -- juliem@lcnw.org.

Yum Cupcake

Mary and Jody took us to Zoo Tunes for Eva's birthday. Mario really liked his chocolate cupcake.

Today is Eva's Birthday. Her mom made her own blog for her to update with events and things that are going on in her life. You can check it out using the link under her face at the right.Mario wore his tie dye to Isabel's birthday party in BC this weekend.

Mario had his first operation 1 year ago today

I made this "montage" of his journey, enjoy when you have 6 min and 22 sec to spare :)

Make an on-line slide show at www.OneTrueMedia.com

Sunday 22nd at Cannon Beach

Another photo from a different camera...me and the kids enjoying the beach.

Cannon Beach Wknd Getaway

Physical Therapist Assessment

We had our check in with Mario's physical therapist at Children's yesterday. Mario is doing great. He's about a month behind on his strength/balance/walking skills, but otherwise doing very well, developing all the right muscles, etc. She thinks he should be walking within the next month or two so we'll do one (hopefully final) check in with her in August. I love that they are so thorough in monitoring his progress and happy to have them validate what I already thought, that he's quickly catching up from his weeks in the hospital and will be doing all the normal stuff a 14 month old should be doing any day. Happy Summer all!

Happy 2 Month Anniversary for Mario's Second Liver

Just taking a moment to note that Mario will be 2 month's post transplant (#2) tomorrow. His lab results from this morning are good, still trending down on the liver function tests (down is good). He continues to gain weight and will probably stand up and walk any month now. Thank you all for your warm thoughts and support through it all! There are sure to be bumps along the way, but it is nice to take a moment and celebrate 2 months. Happy Pa's day to all the dad's this weekend too :) Best, Phoebe

Happy Junuary

I'm happy to report that we were moved to BIweekly clinic today. Woohoo. Still need to draw labs weekly, but it will be nice to have 2 less trips/month into the hospital. We have a physical therapy check in this month too, so I'll have a report about that next week.

Today, I wanted to share this photo of the kids eating edamame. Eva eats them out of the shell and we've been "shelling" them for Mario. Well, he'll have nothing to do with the pre-shelled beans - gave quite the protest in fact and grabbed a handful of the shells and copied his sister to drag them through his teeth to get at the yummy soy beans. He's pretty good at it actually - YAY Mario on fine motor skills. He's starting to pull up to a stand, so he will catch up on walking any day.

Hope you're all grand, happy junuary (it has been raining and cold this month in Seattle - very unseasonably cold for those that don't get that reference). best, phoebe

Happy June

I know I haven't been updating as frequently, please take it as a good thing :) It has been pretty hectic going back to work and trying to keep up with all of Mario's appts. Otherwise, things are fine. We are hoping to get down to just once/week on labs this week, clinic is already once/week. Progress! Mario was playing with my phone this morning pretending to talk on it (photo). He also started pulling himself up in his crib, so we had to do the adjustment to make the matress lower. He is moving around a lot, pulling himself up, not walking yet, but good progress on his gross motor skills. He's got a developmental testing appt in mid-June to be sure, but I feel pretty confident that he is catching up nicely.

Riding forward!

Mario gets to face forward in the car now...since he is over 20lbs. YAY.

"Look at my cool boots Mom!"

Into Everything...

"Look Mom! I got all my toys out of the box and spread them around the living room. Isn't it cool!?""What can I find to open, spill, or take apart next?"

Mario had labs drawn this morning. Things are looking pretty stable. I have a chart. The yellow, tourquise and red lines are the liver function things that we want to see stay down... notice how high they got with each surgery and during rejection.

Mario Dancing

We had clinic today. Mario's labs are looking good and he gained weight. The doctor agreed to let us skip clinic Thursday (we have to do labs but don't have to come to clinic) so that's 56 less miles of driving this week (labs are at 7am and clinic in the afternoon so two trips in). He'll be back for labs and clinic again on Tuesday so they are still keeping close tabs on us. Best to all! Looking forward to some summer weather this weekend 80's in Seattle FINALLY.

No more yellow.

Here's Mario today, playing outside the pharmacy window while we wait for his medicationHere is Mario around Christmas time, just after getting listed for a liver transplant...yellow

Update from Clinic Tuesday, 5/6

All is well. Liver Function labs all came down nicely. Mario was bouncing around, smiling, laughing during the appt making everyone smile. His weight gain is in question, but I think because of using different scales, sometimes weighing him naked, sometimes with a diaper, last week he had his dressing on his incision, etc. Now that we're at clinic 2X/week we should get consistency and track his true gain. He's been eating a lot, so I expect gains when we check him tomorrow. We seem to be getting close to the right levels on his immunosuppressents, vitamins, etc. A few more weeks of monitoring those and we should have a nice routine down. We'll continue to have clinic every Tue and Thu until then. Then, they'll start to decrease our visits to just weekly, eventually monthly...

Also, Eva picked and brought flowers for Nurses week which is 6-12th of May.

He's home, lots of appts this week and I'm starting work again on Tuesday so we'll be busy for sure! But, he looks great and is doing fine. Will update this week as we monitor his lab results.

Plugging along with the steroid treatments. He's doing great, eating well, liver numbers coming back in line. They gave us a "pass" from the hospital 1-7pm yesterday and today so we got to hang out at home as a family for a bit. We hope to come home tomorrow after the morning dose.

One "good" side effect of the steriods is that they make you hungry...Mario has no issues with eating!

Biopsy results as expected that he was rejecting...labs show he has already responded well to the steriods so we'll keep on this track. Hope to be home on Saturday.As you can see, he's looking great. We get the biopsy results later today...already had one round of steriods last night and did fine with it.

Evening: We're here at least overnight. They're starting the steriods tonight even though we won't get the biopsy back until tmrw mid-day. All the docs seem to think his labs are pretty consistent with rejection and seem confident this is the way to proceed and treat it. 5 days of steriods. No big deal right :) Part of our new normal.

Morning: Jumping back on the roller coaster! Liver labs are elevated more so I'm taking him in for an ultrasound and biopsy this afternoon. We'll be there overnight at least, if it is rejection, they give him a daily dose of heavy steriods for 5 days (which requires being in the hospital). Seems to be a pretty common thing from what I read and they have a standard way of addressing it...

Sorry for no post, we've been really busy trying to get Mario's new medication schedule worked out over the weekend and working hard to get him to take fluids. He is still not meeting the target of 30 ounces a day, but we were close yesterday. We saw the pediatrician today and Mario had a temp - 100.7 so I've checked in with the team. He had slightly elevated liver labs Sat morning so they will check tmrw morning and if still elevated they'll do a biopsy to rule out rejection. Keep your postive thoughts headed Mario's way. If he has rejection, we'll end up back in the hospital for a 5 day round of steriods. I have a cold so I'm hoping he is just dealing with the same. A GI we talked to on Sat said that the type of white blood cells he shows elevated would be more consistent with a virus. Strange to hope he has a virus, but that's what we're doing. I'll update tmrw night, hopefully with good news that his labs came back in line and no biopsy necessary.

Happy Birthday Mario! Carrot cake cupcake with walnuts (for extra magnesium) and cream cheese frosting...mmmmm!!!!

Going Home

Wow, we're going home. I'm so relieved. Mario had great labs this morning ate a big breakfast and with no IV's in his arms for the first time in over a month, he went to rounds, fully clothed and smiling. A bit of a set up on my part :) But this kid (and this mom) deserve to be home now. Thank you all for you continued support and encouragement. We got through this long experience on the strength you shared with us. This is really just the beginning but what a wonderful beginning it is! Love to all, Phoebe

p.s. we'll have quite a bit going on at home as we get settled, get Mario's new schedule of meds all set, etc. we have to do his dressing changes and meds on our own now so please understand if you don't hear from us this weekend/next week. we'll be getting ourselves back into our routine.

One month in the hospital...

Today marks the 1 month anniversary of our original admit 3/23 for transplant #1. I had hoped we might get to go home tonight after our last dose of IV antibiotics but Mario has more funky lab results today. His potassium is high (and magnesium low) both caused by his immunosuppresion and it's effect on the kidneys. It can be managed with supplements but they need to monitor him closely until we get the balance correct. So, at least another day before we can focus on getting settled at home. I am hoping to be home on his birthday. No party since he can't be exposed to germs (sorry folks) but it would be nice to be home with the whole family together that day. One can hope... I'll update tmrw, right now Mario is sleeping peacecfully in his stroller (see photo) after a very busy morning with visits from nurses, surgeoon, nutritionist, etc.

Dinnner of rice, chicken, peas, some ice cream for dessert. We got to remove our line for a bit and take a stroll(er) around the floor. Mario still doesn't want to take much liquid. I managed to force down about 4 oz of a bottle right before nap. Unfortunately, we need to get him taking fluids better before they will talk about sending us home. His last dose of IV antibiotics is tmrw night so there isn't much else keeping him tied to the hospital other than fluid intake and dressing changes (his incision is still and will remain open until it heals on its own). More tmrw, love to all, PhoebeAnother big breakfast of peanut butter toast, bananas, cheerios, oatmeal and yogurt. Still doesn't want much to drink. They have a him on a drip, gotta overcome that before we can talk about going home. Low mag levels too - I guess this is normal, one of his immunosuppresents makes his kidneys "waste" magnesium so we're adding a supplement for that.

Breakfast = scrambled eggs, pancakes with peanut butter. He isn't drinking, so we need to focus on that today. His incision is healing, but still open. He decided to remove his drain overnight too so he has an oozing hole in his belly (perfectly normal they tell me). So, today we focus on more food and hopefully drinking so they can remove IV fluids. We might take a stroll(er) around the wing too...the doc encouraged us to get him out of the room (just don't touch anything).