Happy New Year

Sorry for the delay in posting again! Things have been hectic to say the least. Mario can not attend day care anymore. His poor little immune system needs a rest. So, we are shifting gears a bit this week and getting him settled at home with his new nanny. We did want to make sure everyone knew he was home and doing fine again. We have another new medication to add to the schedule but otherwise are settling back to normal for a bit. I tracked the stories of 4-5 "liver kids" from my on-line forum through their transplants over the holidays. With mixed emotions, clearly...sympathy for such courageous donor parents and joy/relief for the recipients. I know Mario's day will come and he'll get to start down the recovery road too. The waiting is so hard though.

Wishing you all a very Happy and Healthy New Year - lots of love and hugs, ARAUJO Fam

Going Home

Looks like Mario is going to come home today. Now poor Israel is waiting while the nurses and doctors go through their paperwork to release him. Frustrating on the weekend when things are slower. We hope that they'll be on their way home soon.

Emergency Room Visit

Well we had a rough night last night...around 11pm Mario vomited blood. First signs of Varices, caused by portal hypertension. I rushed him to closest emergency (Overlake) as directed by the on-call GI doc. There, he was found to be stable (and even smiling) so we got to ride in an Ambulance to Children's. Mario and I spent the day there...Israel sleeping with him there tonight. We hope to bring him home tomorrow as the docs think it was a first time minor event. He needs his new liver, but he isn't in immediate danger. We'll update more when we get the report from the doctors tomorrow at morning rounds. Take care all, think positive for our little smiling Mario. Love, Phoebe

BE AN ORGAN DONOR

Well, you had to know it would happen at some point. Here's me, telling you to tell everyone you know how important it is to be an organ donor. It seems obvious, I know everyone here in WA state can easily be an organ donor just by having a driver's license. But for some reason, not everyone is active...and kids like Bethany and Savannah (read stories - links to the right) go on waiting... An adult liver can be split and save a kid like Bethany, Savannah, Mario... Please be an organ donor and feel free to share this blog with anyone in your circle who needs to be convinced to be one. LOVE YOU ALL! Phoebe

HAPPY HAPPY MERRY

All is well. Thank you all for your cards, gifts, calls, thoughts, etc. We're a bit behind on getting cards and the lot out this year... I have some pics of the kids and stuff that I am meaning to get in the mail. Thanks for your patience :) Have a wonderful holiday. Mario's next clinic visit was rescheduled for the 8th of Jan...we have labs on the 27th still so we'll update if we get any news on that front. Know that you are all in our hearts as we spend the next couple days at home in our jammies being a family :)

Our love, Araujo's

December 18th

All is well. Besides Mario's ear/eye infection, Eva ended up with an ear infection. We left the kids with Aaron and Sarah (bless their hearts!) for the weekend and went to Whistler. It was nice to get away. Mario did fine! Eva always does fine with Isabel to play with. Israel's swearing in is Thursday this week...I said it wrong in last post. Good though cuz they'll take his green card and he'll have to apply for a passport and wait...so would have been bad to be greencardless over the weekend going in/out of Canada! I came home with a sinus infection, so I'm plodding along through work today...yuck. Mario has clinic on the 27th so we won't have any major updates before then unless the pager goes off.

Everyone have a wonderful holiday! Thank you for all your cards, care packets, presents. I'm sorry to say I have done NOTHING this year. Not even put together a stack of holiday cards to mail...It has been so hectic. Please know we are thinking of you all during the holiday and wish you nothing but happiness in the new year.

Mario: Eye/Ear Infection, Israel Citizen on Thursday

Well, Mario has an eye and ear (both) infection. He's on a round of antibiotics. He also had labs drawn yesterday to check vitamin levels again. He still smiles, but it is sad to see him with goopy eyes.

On another note, Israel had is citizenship interview today and passed with flying colors. Seems they were most concerned with english language speaking and only asked a few of the "test" questions about US constitution and government...although he studied all 100! His "oath taking" ceremony is on Thursday.

I'm in Dallas, tired from flying early and still have late meetings tonight, home tmre night - marathon. Take care all

Listed

3PM 12/5 **Transplant coordinator notified me today that he was listed with a PELD of 10. It got worse because of his INR and other lab results.

10AM 12/5 Mario is officially on the liver transplant list. His INR did not improve week over week so we have to check that again next week...even though we've doubled the oral vitamin K. It wasn't bad enough to need a shot this week but needs to be checked frequently. Poor kid is having to give blood more frequently which is hard. We knew this was coming but it is still very hard on all of us. Thanks to all who have called, emailed, continued to check in and keep Mario in your thoughts and prayers. Thanks also for all the calls to check in about all the WATER in Washington this week. We were lucky this time and the river stayed within it's banks. Most of the flooding was south and west of us this time. Take care all

Mario will be listed tomorrow

They decided at the weekly transplant team meeting today. We have labs and an appt with one of the surgeons tomorrow afternoon to review details and we'll have Mario added to the liver transplant list.

PELD 9

Well, Mario's PELD score is up to 9 according to our nurse/transplant coordinator. They'll be discussing his case again in detail on Monday and decide if it is time to list him. Israel and I have expressed our opinion to be shared with the team - which is that we think it is time to get him on the list. The roller coaster ride continues... Mario still smiles.

info on PELD calaculation can be found here at: http://www.unos.org/resources/

November 27th - Monthly Clinical check-in

Well, we met with the transplant folks again today...for our "monthly" check in. We actually ended up talking to Dr. Reyes, the head surgeon (not by appt, but because he saw us in the hall and wanted to meet Mario). So, very apparent that they'd been discussing him. Dr. Reyes and I were able to cover more of the pros and cons of waiting versus listing Mario for a donor now. In short, he comfirmed (what we already know) that Mario has incurable liver disease and it will eventually fail. He has started to show signs of portal hypertension (enlarged spleen) so it is just a matter of time... We reviewed lab work with the hemotologist and nutritionist and have found that he is still not absorbing enough vitamin K, needs more D and because of taking more D, needs to supplement with Calcium. We will go back in 1 week for labs again to check all of these and might need to do a K shot if INR doesn't improve. The good news is that Mario is STILL growing, gaining weight and length...following right along the 50th percentile on the growth chart for the last few months now. The team will discuss Mario again on Monday and recalc his PELD score based on recent labs. Will keep you all posted. Keep in mind, although things are starting to sound worse, we are experiencing exactly what we expected to experience. The name of the game is waiting and we are trying to get Mario as far along as we can without causing long term damage to any other organs. He continues to grow and thrive, so if we can manage his nutrition (with all the added supplements) we aren't doing all that bad. As good as we could expect. Take care all...love, Phoebe

p.s. seemed time for a new photo so I just added one...chubby cheeks and we have 2 bottom teeth!

HAPPY THANKSGIVING

Mario had his first "meat" on Thanksgiving....Gerber "Turkey and Gravy" he LOVED it. He is becoming quite the little BOY...sitting up now, 2 teeth on the bottom, growing! He has this mischievious little smile....oh I cannot imagine what he'll be getting into when he starts MOVING :) We are thankful every day for the miracle of Mario and his amazing spirit. We are also so thankful for all of YOU! The amazing people in our lives who monitor his progress and send positive energy his way. Happy Thanksgiving to all! We meet with the transplant team for a monthly check-up on Tuesday and will post any news then.

Labs stable

Mario's condition remains about the same. We're managing his vitamin levels with supplements, he's eating more and more, still gaining weight. The extra vitamin K we're giving seems to be getting absorbed as his INR was not high enough to require a shot last week. We have our next appointment and blood work on November 27th so we'll report back then. We've tried most veggies and fruits without incident so we'll be moving on to meat this month...maybe some ground up turkey :) Happy Thanksgiving everyone!

Labs tomorrow!

Mario gets his 2 week labs drawn tomorrow... hoping the extra vit K and vit D and double down on the ADEK are all working... will update later in the week with results.

Mario Monthly Doc Visit

We had Mario's monthly check in with the transplant team this week. He's gained weight - up to 7.6 kilos/~16 lbs. It appears to still be "real" weight. Mario continues to have more trouble absorbing fat soluable vitamins. We keep adding supplements...he's on 2X/day ADEK plus additional K 2X a day and now adding some D once/day. The worrisome one is VitK which when low can cause problems with blood clotting (slower than normal, causes bleeding issues so really bad). We have to monitor this closely, so he will have blood tests every 2 weeks for now on. They also doubled his Urosodiol (bile acid)...mostly due to the fact that he's bigger.

We discussed our options between a) list for tranplant now or b) continue to manage the vitamin levels and gain more weight. We opted for b. I have two main reasons for this...1) he is HAPPY, and is not experiencing any discomfort (yet) so as long as we can gain weight and manage his vitamins with supplements it seems better to wait 2) it would be a fantastic milestone for Mario to get him to his 1st birthday BEFORE transplant. Main reason for this being that he would get his MMR, Chicken Pox vaccine. If he is transplanted prior, he will never be able to get vaccinated for those diseases.

That's the scoop for now. Of course, everything could change at any time. But for now, we manage the vitamins, continue to gain weight and hope for a birthday party pre-transplant. Send him some good growth vibes and continue to think positive. We'll update in a couple weeks or sooner if anything comes up. Our Love, Phoebe and family.