She brought home the GOLD!

We all know that Elise is a CHAMP and is already gold….but this past week, she participated in the DONATE LIFE Transplant Games of America 2014, held right here in Houston, TX for the first time in 32 years.  And I am proud to say that Elise truly did bring home the GOLD medal on the final day of the event….we dedicate her games to her donor angel, Julia Hillary Wardwell and her family.  Our experience this past week was amazing….we have created memories that we will treasure forever.  Let me tell you about it. 

Friday, July 11 was registration activities and the Welcome Reception held at Hilton Americas, an AAA 4-Diamond hotel conveniently located in the heart of downtown Houston and connected to the GRB Convention Center.  I spent a good portion of the day volunteering in the TEAM TEXAS room before picking up Ethan and Elise and then retrieving my parents from the airport in the afternoon.  We then went on to the Hilton, picked up our credentials and registration packets, and thoroughly enjoyed the Welcome Reception that evening.  As I looked around at the hundreds of transplant recipients, donors, donor families, and supporters, I began to realize the enormity and significance of this event. 

Saturday, July 12 was a very full but exciting day.  We started out at 8:00 am at Allen Parkway for the 5 Walk & Run, which Elise and I completed together. Honestly, the heat was brutal, but rather than focusing on the temperature, I enjoyed the time with Elise and found each step in the stifling heat to be very symbolic of the transplant journey we have been walking since her diagnosis. Rather than miserable, it was empowering. Just as I can walk/run a 5K in the Summer heat with Elise in tow, I most certainly can and will support Elise, hold her up, and march through any medical obstacle we face.  We crossed the finish line together, and I thought to myself, "We got this!"  

At 11:00 am, we met the Wardwells--Elise's "donor family"-- at Guadalajara Hacienda Mexican restaurant for lunch before the Donor/ Recipient bowling event, in which Elise participated with her donor's daughter, Ava, from 12 pm-3 pm. The bowling event was held at Lucky Strike bowling alley downtown, and it was such a special experience for us….a great day….and a real celebration of life in every way. Elise & Ava (and Ethan too….shhhhh) bowled together and had a blast! Who cares about points…..I never even noticed the score board, and the teams we ware bowling against left long before we did. There were no actual strikes on the lanes, but what struck me most was that it felt like such a "family" event. We are family with the Wardwells.  Their daughter….sister……mother…..lives on in Elise.  Elise embraces them as if she has known them her whole life, and I'm not sure that I can describe in words how that makes me feel….so suffice it say that my heart is full.  We are blessed to have Julia's family as part of our own….to know them and love them. 

At 5:00 pm on Saturday, we met with TEAM TEXAS for official team photos. Our team filled the room. Elise refused to sit for the photos without me, so I popped into the pics with her! Immediately following team pictures, we boarded the shuttles which transported us to the Opening Ceremonies, which began at 7:30 pm. It was an incredible experience to escort Elise on to the field with Team Texas.  One day, she will be able to walk on her own-- and I will enjoy watching her  in all her glory from the stands--but for now, we're a joint act. 

On Sunday, July 13, Elise had no scheduled sporting events, but we did attend the TGA Family BBQ at Bayou Music Center…. a live music venue located in downtown Houston which has hosted big names like Cold Play (incidentally, one of Julia's favorite groups,) John Legend, Norah Jones, and Nickleback since 1997.  The food was great….the country music was great…and the dancing was GREAT!  Elise danced her heart out with her Paw, and I actually captured it on video! 

On Monday, July 14, Elise and I had the honor of pinning a pinning a quilt square in honor of Julia onto the TGA 2014 Quilt during the Quilt Pinning Ceremony. I said a few words about Julia and the impact that her decision to DONATE LIFE has made on Elise and on our family. There were many donor families there who pinned squares also, and to hear them speak…to hear their stories….was something I will never forget. I thought about all the transplant recipients there at the games…..all of those we met…..our friends…..and how can you help but think that for every recipient, there is an organ donor…..someone who gave the gift of life…..all true heroes.  The TGA 2014 Quilt will now be sewn together and completed, and it will travel around the country for years to come.  Next stop….Cleveland, Ohio 2016.

Tuesday, July 15.  Elise's big day…..her main event…the Cornhole (ages 5 & under division.) We had breakfast at the Hilton and then arrived for official practice in the convention center at 9:00 am.  Elise had several great practice rounds….probably too many….because when the actual competition began at 10:00 am, she initially froze….she refused to pick up a bean bag….she sat on the floor and wouldn't budge.  My heart started to sink, as we all know that 2 year olds can be very head-strong.  I knew good and well that if Elise decided she wasn't going to do it……she wasn't going to do it.  Finally, by God's grace, after watching 2 or 3 other kids take their turns, she stood up and gave it her all.  She thew one bean bag after another for four rounds….her total points was 22, and she was named the high point scorer!  At 11:30 am, she was presented with the GOLD medal for Cornhole in her age bracket. I suppose you could say she was overwhelmed with emotion, because when the medal was placed around her neck and she heard the applause as she was put on the top of the podium, she screamed. It's a little funny to me now as I think back on it and look at the pictures…. LOL.  She eventually calmed down, and she was thrilled to have her medal. I had been talking up "the medal" that she could get for the past 6 months.  She was only able to participate in this one event, and by God, she took home the GOLD!!  We are so proud.  We are truly blessed.  I know that this gold medal will mean so much more to Elise in years to come, but right now….in this moment….it absolutely means the wold  to me. Since Day 1, it has been my mission to ensure that Elise lives as normal a life as possible and that Biliary Atresia and transplant does not hold her back. This gold medal proves that nothing is impossible for her, and it shows me that I am doing my job. She is a fighter…a champion….and she can do whatever it is that she wants to do. I know that great things await her. 

Happy Liver Dance

We had "liver clinic" this morning, and I was able to return home and promptly make a "Wonderful Wednesday" post on Facebook, which means that we're doing the HAPPY LIVER DANCE tonight!  Seriously, I can not adequately explain my relief as I reflect on the outcome of our clinic appointment today.

We started out bright and early with labs at 7:30 am. The blood draw went exceptionally well….just one stick, five vials of blood, and no tears! Elise then enjoyed her breakfast treat--a sausage burrito and milk-- and we were off to the 11th floor for clinic.

Today, June 25, 2014….waiting on liver clinic…

When Sarah, our transplant coordinator, walked in the room, Elise said, "Where's Dr. Fishman?"  Happily, he wasn't far behind Sarah, and they were quick to say that Elise's labs just look BEAUTIFUL! We are so happy that Dr. Fishman made the decision to be patient with her labs rather than jumping to biopsy in April when her liver enzymes were elevated. Her current numbers are GREAT! AND, let's not forget that she has had bronchitis this past week and is currently taking antibiotics, so I was bracing myself for less-than-stellar labs.

Here's what we're looking at….
AST 52,  ALT 49, GGT 29, direct bili 0.0, Albumin 4.2.

We chatted with Dr. Fishman and Sarah about a "little of everything"…about our recent trips home, upcoming Transplant Games of America, and a possible trip to Disney World within the next year. I mentioned that Elise eats just about anything these days and has been asking for random foods such as "rice" lately.  Dr. Fishman says, "brown rice….give her brown rice…and she IS still on skim milk, right?" LOL! Which brought us to the topic of diet/nutrition.  Her current weight is 31 lb 5 oz, and height is 2'11".  This puts her in the 75% for weight and 50% for height. He said she's fine right now, but we just just need to watch her and continue to encourage low fat and less sugary foods; basically she needs to follow a "heart-healthy" diet, which is also a "liver-healthy" diet. 

Back to the subject of the Transplant Games of America (TGA)….the games are coming up July 11-15, and Elise is proud to be a part of TEAM TEXAS.  The word on the street is that at 2.5 years old, she is the youngest "athlete" on our team, possibly even in the entire games!  On Saturday, July 12, she and I will participate in the 5K walk/run from 8 am-10 am, then at 12 pm she will participate in the donor/recipient bowling "special event" with Ava and Layla-- her "donor angel" Julia's daughter and niece. The opening ceremonies will take place in the evening on Saturday.  On Sunday, July 13, we will attend the donor tribute and the TGA family BBQ. On Monday, July 14, Elise will be taking part in the Quilt-Pinning ceremony, where she will pin a patch on the 2014 TGA quilt in honor of Julia, her organ donor, her angel. Finally, on Tuesday, July 15, Elise will compete in her "main event," the Cornhole (i.e. bean bag toss) for ages 5 and under!

Our homemade quilt square for Elise to pin during the TGA Quilt Pinning ceremony

We have lots to look forward to….plenty of memories to make…..but most importantly, Elise is enjoying life every day! We are making the most out of every moment, never taking a day for granted. I've said this before, and I'll say it again…..Julia's gift of organ donation has restored life not only to Elise, but to our entire family.  

As I posted on Facebook on June 18…

Random moment 984,274,621,456 for which I am so very grateful! Elise enjoying splash day today at preschool just like all of the other kiddies! We are blessed.

If you are not already registered, please consider registering as an organ donor!! 

A month in review...

Today is June 8, right?  Yes, well then I have a little catching up to do….

Exactly one month ago,  Elise seemed to have a "cold." She frequently develops "reactive asthma" or "reactive airway" symptoms when ill, so I decided to get myself an early Mother's Day gift….a pulse oximeter. Well….within 12 hours of my coming home with this new gadget, it showed a significant decline in Elise's respiratory status…..so concerning that I paged the liver/transplant doctor on call and left for the ER rather than waiting on a call back.

Upon arriving in the ER, her vitals were critical, and she was placed on "shock protocol." Believe me when I say….there was no waiting around.  She was immediately triaged, and as soon as the triage nurse uttered the words "she's shocky," we were put in an exam room and quickly greeted by the ER attending physician, all available nurses who were simultaneously completing assessment, drawing labs and cultures, and starting IV fluids, the radiology tech w/ a portable x-ray machine, and a respiratory therapist who was taking a nasal wash sample for viral studies and starting Elise on oxygen.

                     

Her WBC (white blood cell) count was 17,000, and her chest x-ray showed pneumonia with a collapse in the left lower side of her lung. Her urinalysis and urine cultures were also positive for a urinary tract infection. She spiked a fever, which was > 102 by the time we arrived in the ER, and her temperature did not respond to the oral Tylenol given upon admit, so she was given IV Tylenol, approved by the liver doc. IV antibiotics were also started.  Given her immunosuppressed status, she was admitted by the liver/transplant team critical care team to the PCU.

Here is the blurb that I wrote on Facebook on May 12…

Waiting on docs to round, so no "official word" yet. Between not eating in 24 hrs and doing my crunches all night to see her monitor each time it alarmed, I'm tired and very sore. Lol. Elise is still on 10 liters o2 high flow with o2 sats sitting at about 92%, occasionally dropping to 90%. Heart rate and temp are much improved though. She's still breathing fast, in the 40s. They are monitoring her closely- we are still in the PCU. Labs from this morning are still pending. None of her cultures or viral studies have come back positive to my knowledge. So currently we have the pneumonia, collapsed bottom left lung, and possible UTI. She is on 2 IV antibiotics including Vancomycin and fluids. Her output seems adequate though I am interested in her actual kidney function on her labs.

Later in the day on May 12, I was able to meet with the liver team, and we reviewed Elise's liver panels. Her liver enzymes showed significant improvement since beginning the IV antibiotics, so my thought was that maybe this respiratory infection has been brewing for several weeks, and this has been the problem with Elise's labs!  Liver team agreed. 

Mother's Day came and went while Elise and I remained at TCH.  David visited with Ethan each day, and my Mother's Day present was a small/portable size Keurig coffee maker and K-cups!!  I mean….I have to say this is BRILLIANT!  I have frequently complained about the coffee available on the floor….and it's not always easy or affordable to take a walk to the Starbucks. I planted this idea in David's head, but I must credit my "liver-mom-friend," Dorothy, with this notion.  I remember visiting Dorothy and her baby boy, Jason, and noticing the Keurig machine in their room.  I was literally stunned and could not believe that I had not thought of this after more than 20 admissions to TCH in the past two years.  

Here is the blurb that I posted on Facebook on March 13….

Worst night we've had in a long time last night. Elise was extremely agitated, ripped out her IV and repeatedly pulled off leads and o2... She kept de- satting and took a few steps back on her o2 wean... Around 2 am after second back to back round of albuterol, she really went nuts. At that point I requested to speak to the attending ICU doc and discussed my concern that this was all being caused by the albuterol, and that we should switch to Xopenex which is what she is prescribed at home, and that's in her medical record here. He agreed and changed the order. Since 4 am she had been doing much better... Much calmer and down to 5 liters o2. ICU team says she is better, but not out of the woods, and probably several days or a week from being able to return home. ICU doc took a second look at the chest X-ray on my cell phone from March (when she swallowed the penny) and had me email the film to him so that he can do some comparisons and possibly consult pulmonology to look into whether there was a pre-existing issue with her left lung that could have exacerbated this whole situation. Waiting on today's word from liver team which will include a review of her labs. 

March 14….Elise started the day being given a trial without supplemental oxygen.  And she ended the day discharged home.  Prior to discharge, I mentioned to the resident MD that I was suspicious that Elise was about to spike a fever, as her face appeared flushed.  I was assured that this was probably just a side effect of the IV antibiotics.  Hmmmm……

On May 17, we were on our way back to the ER at TCH. Elise's temperature spiked to 102.2,  she was not urinating, and her oxygen saturation was again dropping. Liver team wanted her back in. Her chest X-ray  showed more inflammation than it did previously, so she was re-started on the IV Vancomysin and Zosyn….and an additional antibiotic was started….Azithroymsin, which treats mycoplasma pneumonia. She was also of course put back on supplemental oxygen.

                             


May 18…. David took over with Elise at TCH, and I went home to spend time with Ethan.  I hated leaving the hosital…ahem….I hated giving up control of the situation….but I really didn't have another choice.  David happened to be scheduled off the next day, and I need to work whenever possible to preserve my available PTO days for when I really need to take them. So I swapped off with David, returned home with Ethan, and brought Ethan out on a Mommy-Ethan date to Chuck E Cheese!!

                         


On May 19, Elise was discharged in stable condition, to continue oral antibiotics, and Daddy brought my baby girl home!!

Since Elise has been home, she has been doing GREAT!  During her hospitalization, one doctor mentioned the possibility of acquired tracheomalacia as possibly triggering Elise's respiratory issues. My first though was "no," but then I am prone to denial….so after a little research and discussion with Elise's primary hepatologist, Dr. Fishman, transplant coordinator, Sarah, and pediatrician, Dr. Pocsik, I decided I would feel most comfortable with a pulmanology consult…..as soon as possible.  So we have an outpt appointment scheduled with a TCH pulmonologist, Dr. Farber, on June 10.

"This is a Marathon, Not a Sprint…"

This post may be long-winded, so I apologize in advance. Part of the reason I blog is to process information and experiences, and I took away a great deal from my impromtu conversation with Dr. Fishman this morning. Actually, I suppose it wasn't really "impromptu,"since I had every intention of requesting a moment of his time following the TCH Liver Center breakfast this morning. 

As of yesterday, Elise's liver panel remains elevated, so I emailed Dr. Fishman last night with a few questions and issues I wanted him to consider; I requested his thoughts on whether Elise's elevated liver enzymes could be an adverse hepatic reaction to Augmentin antibiotic, and/or whether we had any evidence to rule out auto-immune hepatitis. After spending most of yesterday evening thinking, looking over dates, talking to other liver moms, and reviewing Elise's medication record, these were the two possibilities that really scared me.

So, when I arrived at the TCH liver center breakfast this morning, I was greeted by Dr. Fishman, and he immediately acknowledged my concerns, as he had already read my email. We spoke briefly before the breakfast and presentation and then again for about 45 min afterwards. I explained that I realized last night that Elise's last normal liver panel was 3/19/14, and she was started on the antibiotic Augmentin on 3/24/14 by her pediatrician. Last night, I discovered that Augmemtin can cause negative hepatic reactions including elevations in bilirubin, AST, and ALT, and findings of liver biopsy can be consistent with that of hepatitis. Dr. Fishman gave me a "kudos" for my discovery and stated that it will in fact need to be considered in Elise's differential diagnoses, but he also said that he does not feel this is the issue at hand, as this reaction occurs only in approximately 3% of patients.  In regards to auto-immune hepatitis, again, he said this is very rare, but it is indeed a diagnosis that will need to be ruled out. 

So, then, I asked Dr. Fishman about his gut feeling; I explained that I need to know how concerned I should be and what to expect now. His response? "This is a marathon, not a sprint." That's what he said. This is so true, and I have known this from the beginning, but hearing him say this today put things in perspective.  As he explained, Elise will be a transplant patient for the rest of her life.  While they realize that we want answers [yesterday,] a resolution to this one hurdle will not be the end; really, there is no finish line; there is only pushing on.  As he pointed out, "you have to look at the patient," and Elise looks great!  Yes, her liver enzymes are elevated, but her liver function and other labs are normal!  He said that we will re-check Elise's liver panel next Tuesday 5/13/14, and if there is not significant improvement, he will want a liver biopsy. His "gut feeling" is that a biopsy will confirm a viral infection in her liver such as EBV (Ebstein-Barr Virus.)  Possibly CMV, but since her CMV blood tests have been negative weekly, probably not. Elise's labs have shown copies of EBV in her blood for 8 months though, so there it is reasonable to believe that EBV may be present in her liver. For this reason, he hesitates to increase her immunosuppressent medication in an effort to bring her liver enzymes down; if she does have a viral infection of the liver, increased immunosuppression would cause the virus to flare up which could potentially cause a severe complication such as PTLD (post-transplant lymphoproliferative disorder,) or essentially, cancer.  So, okay then....a biopsy it is!  Definitive answers please!!  OR, a miraculous decrease in her liver enzymes!!!

Now, just for a moment, I have to go back to the TCH liver center breakfast this morning. What a great presentation!  Five of our hepatologists (liver specialists) spoke, as well as several special guests, and most of the liver center staff attended, including some of those who work behind the scenes with our liver kiddos, such as the interventional radiologist who has inserted both of Elise's PICC lines, and our pathologist, whose reports I have read many times in Elise's chart. It was simply amazing to meet a cardiologist associated with TCH who is a 57 year old survivor of Biliary Atresia--he is "kasai-only," no transplant as of yet, and living a relatively healthy life. Apparently, he had the "kasai operation" before the operation was even really named, and he showed us the back cover of a magazine from the operating room where his surgeon illustrated what exactly he did during the surgery. "This is my medical record," he said.  Wow!!!  Well, he certainly carried the message of hope for medical miracles home.

The presentations by the physicians this morning covered various liver diseases, several different ongoing research studies at TCH, and the statistics and outcomes related to liver transplant at our center. I was impressed to see that TCH led the nation last year, in 2013, in the number of pediatric liver transplants, completing 98 liver transplants--Elise was of course one of them. TCH also exceeds national averages in success of the liver graft and patient survival post-transplant. There are also more participants in the iWITH research study (complete withdrawal of anti-rejection medication) here at TCH currently than at any other pediatric liver transplant center. As I looked over the numbers in black and white....particularly the sheer number of solid organ transplants completed at TCH... I was struck by the fact thatfor every transplant, there is an organ donor.  Thank God for organ donors, and God bless our donors and their families.

Elise's primary hepatologist, Dr. Fishman, during his portion of the presentation  

Dr Himes captured this SELFIE
from left: 1/2 of Dr Fishman's face, me, Harriet & Eleanor (liver friends), and Dr. Himes

Thank you all for continuing to follow Elise's journey. We appreciate the support and prayers so very much!! 

Not Stressing...

Our transplant coordinator, Sarah, and I spoke several times over this past week. Today, we spoke again on the phone and exchanged several emails. Sarah says, "Erin, don't stress." I can't imagine why she thinks I would be stressing.  Well, there might be a couple of things…

Last month, for Elise's annual transplant review clinic, her labs were great;  she was essentially at her baseline:  AST 56, ALT 52, GGT 24.

This past week, however, her liver panel has been elevated, and there is no clear explanation. We have had labs drawn three times within the past 7 days. Following the first draw last Wednesday, after confirming her CMV result to be negative, Dr. Fishman increased her Prograf (anti-rejection med) from 1 mL twice daily to 1.5 mL twice daily. Even with this med adjustment, her liver panel is not exactly back to baseline, which worries me.  BUT, the good news is that her numbers are trending down, even if it is just slightly. 

Here is a review of her liver panels the last week:

Wed 4/16/14:  AST 94, ALT 139, GGT 43

Fri 4/18/14:  AST 86, ALT 118, GGT 42

Tues 4/22/14:  AST 80,  ALT 114,  GGT 38

I also inquired about her kidney function tests today. Prograf is notoriously hard on the kidneys, and since her Prograf dose has been bumped up a little, I just wanted to be sure everything looks good there and that she is well enough hydrated, etc.  Her BUN is 14, Creatinine is 0.24-- both very normal! 

Today Elise's WBC (white blood cell count) was 5.99, which is low (normal is 6-20), so Dr. Fishman suspects she may be fighting off a little bug in her system.  I also pointed out that her Prograf level is still 4.4, even with the increased dosage, and historically, she does not absorb Prograf as well when she has some sort of acute illness such as a cold. She does not currently have any symptoms of a cold or other virus, but I will be watching her carefully and will bring her to the pediatrician at the first sign. It is very important to be proactive and treat acute illnesses, even minor issues, because any infection can stimulate her immune system and possibly trigger a rejection episode. That being said, her doctors say that they are comfortable with the fact that her numbers are trending in the right direction, so we will just continue to monitor very closely.  We willl repeat labs on Sunday 4/27/14, and we are officially cleared to then proceed with our vacation plans, which will take us home to Louisiana for a few days, and then to Orange Beach!

So....repeat labs on Sunday morning.  Which means I will have to wait until Monday for results. Sarah gave me a friendly reminder today, "You don't need to call the liver MD on call to get results on Sunday; I will call you on Monday." PSHHH.... like I would ever do that!  lol.  Oops.

Anyway, this Saturday, April 26, 2014, TEAM ELISE will be participating in Liver Life Walk Houston 2014 for the 3rd consecutive year to benefit the American Liver Foundation. Elise will be leading her pack...probably in sparkly pink high heels, if I had to guess.  

Thank you all for the tremendous support you have all shown our sweet girl. She is so brave, and she amazes me every day. I don't know that I've ever had six tubes of blood drawn at one time ever, much less multiple times/week. But Elise endures this and more, and she does so with a smile on her face. 

One final note.... April is National Organ Donor Awareness month!  Elise was proud to be featured on the TCH Liver Transplant Center display board for the donate life day held on April 10. We attended the event, and we were very excited to meet the captain of Team Texas for the Transplant Games of America. He recognized Elise as soon as we walked up to the table....she is the youngest member of Team Texas, and she will be proud to participate in honor of her hero, her organ donor, Julia.

Elise checking herself out out on the TCH Liver Center display board!!

Elise and me with our team captain (TEAM TEXAS) for the Transplant Games of America

Elise's 1st Transplantiversary

We celebrated Elise's 1st Transplantiversary, March 23, at our house with our amazing friends and family. Thank you to everyone who came out to celebrate with us. And most of all, thank God for Elise's donor angel, Julia, and all organ donors, who make days like this possible.

1 YEAR ANNUAL Transplant Review Clinic

Can you believe this week makes 1 year since Elise received her liver transplant?  It seems surreal to me.  I vividly remember this time last year. I was living minute by minute, day by day....and I could not imagine that on March 19 of 2014 we would be at our 1 YEAR ANNUAL transplant review clinic. But here we are.

Elise and I spent most of the day today at Texas Children's Hospital, and I must say it has been a wonderful day! We started out having her labs drawn at 7:30 am.  We then went to the West Tower 12th floor inpatient unit and visited with a new BA family--yes, we have a new baby boy in our "liver family," who is 5 months old and awaiting a liver transplant. It seems like only yesterday, WE were the new BA family at TCH. Anyway, the emotions they are feeling right now are all too familiar, and it just tugs at my heart. Anyway, Elise and I spent about an hour talking to them and sharing our experience and hope.  

At 9:30 am, we arrived to clinic. We first saw our transplant coordinator, who reviewed all of Elise's lab results with me. She walked in the door saying "Her numbers look great!" Which immediately put me at ease. In fact, her "numbers" are some of the best she's ever had! 

AST 54, ALT 56, GGT 24, conjugated bili 0.0, total bili 0.2, Albumin 4.8

Her CBC (complete blood count) and CMP (complete metabolic profile) are normal!  Her Prograf level is 4.4, which is perfect (goal range 3-5.) 

Dr. Fishman came in saying "She looks FANTASTIC! And BIG! What's she been eating, besides pennies?" Elise was seen in the ER this past Saturday after swallowing a penny. He was happy to hear that I "confirmed" the penny came out on its own in her diaper the next day. "Better you than me," he said. Haha. Apparently, Dr. Fishman routinely fishes foreign objects out of toddlers via endoscope. So yes, better it was me than him.

Anyway...moving on.  Dr. Fishman had a medical student with him, so we reviewed Elise's entire history from age 6 weeks, when Elise was first diagnosed with Biliary Atresia.  It was nice to hear Dr. Fishman's summary, although I'm quite sure I could not begin to summarize our experience in 3 minutes. Dr. Fishman then completed his exam and reviewed her current labs again with me. He and our coordinator emphasized the importance of this milestone-- being 1 year post transplant. They indicate that the worst should be behind us now, although there will always be the possibility of bumps in the road. 

Near the end of our clinic appt, our dietician, Stacey, came in to review Elise's current "growth trends" and "dietary needs." Elise's current weight is 29 lb 15.4 ounces (75th percentile,) and her height is 2'11" (50th percentile.) Stacey advised us to switch Elise over to skim milk rather than whole milk, no more than 20-24 oz. per day. She needs to have a well balanced diet high in protein and veggies and low in sugar and fat, with fruit for snacks.  These recommendations are meant to keep her new liver nice and healthy and functioning at its highest potential. 

After clinic, Elise had her LAST pentamidine treatment. She was required to take inhaled pentamidine treatments once/month for 1 year post transplant to prevent PCP, a very dangerous type of pneumonia. She never really fought the treatments, but it's nice to be relieved of them now.

We ended our day at TCH by meeting up with our very good liver friends, Tara and Abby.  Elise and I waited with them for Abby's labs, which gave Tara and I lots of time to chat and catch up while Elise and Abby built a lego choo choo train. Then we all went down to the food court for lunch. Dr. Fishman and Stacey would be proud to know that Elise ate grilled chicken and fruit with no complaints! 

AND NOW....we are officially free to celebrate Elise's 1st Transplantiversary this Sunday, March 23. We've planned a special gathering of family and friends. We'll have a balloon release in honor of Elise's donor, Julia, and organ donors everywhere. As we know, "Without the organ donor, there is no transplant, no hope, no gift of life." 

Thank you all for your continued prayers and support and for continuing to follow Elise's journey.