A Day in the of Dylan...

Hard to believe I sit here and type 1 year later to the day that Dylan's liver transplant took place. We call this day, Dylan's "Transplanniversary", pretty scary to think a year has already come and passed. From fears of the what if's, to going through the process, to the constant fears of the unknown, and of course all the in-betweens. What a trying year this has been...

I remember leaving our house the night before and making that roughly 2 hour drive from our house to my cousin's house near the hospital. We had intended to leave early and arrive early but that's not how our day went. We had so much on our minds that we didn't end up leaving our house until about 7-8pm at night; arriving to Stanford area around 10pm ish. The whole day was a process; I recall mentally it being very hard. A lot had been going on to keep us occupied up until this day, lots of friends/business associates/caring people were doing lots of fundraisers for Dylan and a tremendous amount of love and support was being shown for our family. Perfect strangers offering support online, old school friends giving well wishes, to lots of family being available to give us the best advice and support they could. The truth of the matter is, there was not much any one person could say or do to prepare us for our night and upcoming days ahead. And before we could turn in for the night, both Dylan and I had to shower with antibacterial soap in preparation for surgery the next morning. I recall as I was washing Dylan that I became really scared, so incredibly terrified for him, and in just a state of disbelief for our situation...Before we went to bed that night, Amber/Dylan/I all prayed; although that sounds like a typical thing to do, this is not something that I had ever done in my life before, as its not how I was raised. I couldn't help but ask the typical questions that anyone would ask. Why is this happening to us? What will happen to him? Will he be ok? Will this fix him? Going to bed that night was beyond hard and it was short lived with very little sleep. Most of you reading this, came into our lives around this point...Surgery day. I wont bother with the specifics of this time of our life b/c a lot of you have followed our story and read it already.

One of the things that I think we never mentioned much is what the docs prepared us for prior to surgery. Prior to surgery we had many meetings with docs, social workers, donor advocates, etc...the one thing that still sticks out in my mind and one that I had hoped Dylan would prove them all wrong was this transitional period after transplant. I recall us meeting with Dylan's transplant surgeon and discussing how things will go and what we can expect. The one thing that I can never thank this man enough for is his honesty. Dr. Esquivel never sugar coated anything at any point on how challenging this would be, he wasn't one of those docs to just keep silent about things, he actually advised on how incredibly hard it would be on all of us. You see lots of folks like to think of this type of surgery as a end all be all "fix" and as much as we wish/hope for that as well...we knew better and Dr. E made sure we were understanding. I remember him vividly telling us that "you don't want to have a liver transplant, that if there was a way to avoid it they would but in doing so you trade one life for another". We at one point pressed on about this "trading one life for another", and luckily for us Dr. E kept true to who he is as a surgeon and a person...he went on to explain for starters the very risky surgery, the extremely hard recovery, and the new life on anti-rejection medication. The main stress was on these anti-rejection meds, these can be worse than all that we needed to go through. Hearing about medications causing cancer, liver damage/failure, and death as a result of it...I will admit it was so hard to comprehend how one can go through all this hardship, pain, stresses and than have to be on medications that can cause just as bad a situation than the unfortunate one Dylan was born with....seemed cruel, unusual, and I think its fair to say it just didn't register in our brains properly. But like anything else in most people's lives, how does one truly understand or know what its like unless you walk that walk. We had no choice but to almost turn a blind eye to this information as we truly couldn't relate to it at the time. As you know Dylan and I made it through surgery day, had some rough ups and downs in the hospital but none the less we were in and out of the hospital in what I would consider an amazingly short time frame...especially given the unbelievably complex surgery such as we both had. This brings us to the last 365 days of our lives.

Over the course of the first few months we actively did everything in our power to get back to a sense of normalcy. I think we longed for a less eventful life; one with less doctor visits, lab pokes, and more time to feel like every other "normal" family. These first few months were extremely difficult, constantly heading back to Lucile Packard for follow up visits and adjustment of medications. Not everything has gone as planned or maybe its best to say not everything has gone as we hoped for. We unfortunately now truly understand what Dr. E and the other docs were talking about...again, unless you live it, you just can't relate to it and even though we were living the life we still couldn't grasp what we were in for. Dylan has spent the better part of this past year in and out of doctor offices, labs, and hospitals. His medications have been altered so many times we have lost count. The only way to truly understand and grasp what's he's gone through is to take a quick snap shot into his life over the last year.

- 4 Separate Hospital Stays
- 2 Liver Biopsies
- 1 MRI
- 1 MRA
- 2 CT Scans
- 10+ Ultrasounds
- 3 Emergency Room Visits
- 17 Days In-Patient
- 10 In-Clinic IV Infusions
- 14+ Urgent Care Clinic Appointments
- 30+ Transplant Clinic Appointments
- 100+ Lab Draws
- 2,500+ Doses of Medications

The life we had longed for Dylan, we still do. It's not our life and its simpler means we seek for ourselves but rather taking a look at what this little boy has gone through and realize at some point and on some level...the tides have to turn. We can only hope and pray that this challenging life we all live will slowly fade with time. We do the best we can and with that we have to continue to press on for Dylan. We know that Dylan will forever live a "different" life surrounded by medications, doctors, fears of side effects to the meds, and the wonderful/special place that Lucile Packard Children's Hospital is. This is now a realized realization and one that is a tough pill to swallow but we are fortunate that we have a place we can trust, a place that will continue to care for Dylan when the tough gets even tougher.

Thank you to the surgeons, doctors, caregivers, family, friends, business associates, and perfect strangers whom have banded together in unity for our son. To those who have written us emails, commented on the site, and selflessly donated money to our family during this continued extremely difficult time of our lives....there are no words that give enough thanks; we truly Thank You from the bottom of our hearts. This is a lifelong battle that has not been the easiest life to live but I couldn't imagine it being any other way, as the alternative that others have been dealt is one that I'm not willing to face. Please keep Dylan in your prayers, keep good feelings towards him, as this last year has proven to us that in an instant it can all change.

A Day in the Life of the Colby Kids

I've been trying to sit down at the computer and figure what to write. Unfortunately I have two sick little boys that want my attention. It's just a regular old virus which is nice. Xander has been up all hours of the night which is totally exhausting. He's my little insomniac so when he's up...he's UP. *yawn*

I read a great study the other day and am sending it on to those who are interested. I have the entire study that was sent to me by another wonderful liver family. If anyone wants a copy, send me your e-mail address and I'll forward it to you. E-mail me.

Pediatric Liver Transplant Graft Recipients Can Stay Off Immunosuppressant Medications
A study in the January 18 issue of JAMA reveals that the majority of children who received liver transplant grafts from a parent were able to stay off immunosuppression therapy for at least 1 year with normal graft function after gradual withdrawal from the therapy...

One day I hope to see Xander and all transplant recipients off medications.

A Day in the Life of Weston::Jinxed

Our blissfully boring ride hit a few bumps during our recent check up with our transplant team. I took Weston for labs early; I just had this gnawing feeling that something was wrong. I truly expected his liver enzymes to be haywire because of current viral illnesses. ALT or AST (I can never remember) was just slightly elevated...GGT was a-ok. Hemoglobin was 6.6. Whoa! Step on the breaks. 6.6?? It should be ~12. Further testing that afternoon showed an almost non-existent iron level.

Poor little guy got a stat abdominal ultra-sound to check all major organ structures and blood flow through vessels. Have you ever had to keep a hungry 17 month old PERFECTLY still for over an hour? Holy cow, I was sweating bullets by the time it was done. Then, more labs and a blood transfusion. It really is an eerie, almost wrong feeling to see your baby receiving blood. I know that our blood supply is safe, this unit was even CMV negative; but it goes against everything I, as a nurse and child growing up in a culture aware of HIV/AIDS and Hepatitis, was taught. If it's not your blood, don't touch it! Be aware of blood-borne pathogens!! **shiver**

Almost a week later, we know what isn't causing the anemia, but are still unsure of what IS causing it. Top suspects are: milk induced (he likes milk more than food), pica (munching on paper) and medication induced. He had a repeat CBC done today at his pediatrician's office...we should know the results tomorrow. And, I am currently the poop police, collecting multiple samples to check for hidden blood. Yay. He also is taking iron supplements twice a day. Poor bubby takes it like a champ and shutters every time because of its nasty taste.

Other than that fiasco, Weston is doing really well. He started part-time day care two weeks ago! He is loving it! I can already notice an increase in his chattering and play. We are making plans to celebrate his "re-birthday" with his classmates at the end of the month!! That's right! January 28th is just around the corner. In some ways it is hard to believe it's been a year since transplant. How blessed we are.

Until next time,

Ashley
http://thegoldengram.blogspot.com/

(download)

A Day in the Life of the Colby Kids

It’s that time of year! My absolute favorite time of year. So much happens during this time. First up is Xander’s birthday, then Thanksgiving, then my birthday, then Christmas followed by the New Year…it’s such a festive time. I love decorating the tree, wrapping presents (opening too!), making cookies and sweet treats, etc... It’s not helpful that I eat half of everything I make. ;-) Guess I know what my new year’s resolution will be next year … again.

I mention the holidays because it has made me do a lot more cooking or rather baking than I usually do. I’ve been making all kinds of goodies in the last few weeks, especially for school events. Xander has food allergies so I have to manipulate recipes to make them safe for him. I try not to make him feel left out at his school parties. So far, I’ve been able to keep him happy. What four year old wouldn’t be happy with a cookie loaded with frosting or marshmallows dipped in rice dream chocolate. Mmmm…

Food allergies are so prevelant among transplanted liver kiddos. A huge number of kids are being diagnosed with them at. Xander’s immunologist sends me articles she finds in the allergy journals she reads. Recently she sent one called, 'Management of post–liver transplant–associated IgE-mediated food allergy in children'. I was thrilled because finally they are starting to study it. For whatever reason tacrolimus is playing a role in food allergies.

Xander has several food allergies; dairy, egg, soy and a few others that aren’t severe enough to mention. It was several months post transplant when we found out. He became very sick. He had chronic diarrhea, was diagnosed (yet again) with failure to thrive (FTT) and was anemic. He didn’t have any other symptoms, like hives or vomiting that would have lead us to believe he was suffering from food allergies. His GI decided to scope him, upper and lower, to see what she could find. I’m so glad she did because she found eosinophils in Xander’s esophagus.

Eosinophils are one of the five major types of disease-fighting white blood cells. They are great infection fighters but they shouldn’t be in an esophagus. Ever. They can inflame and injure the tissue there. Since there was a major concentration of them found in Xander’s esophagus, he was diagnosed with Eosinophilic Esophagitis (EE). After we got this diagnosis, we immediately saw an immunologist.

Xander was initially diagnosed with diary and egg allergies. I don’t know why but he didn’t test positive on his skin, which is the most sensitive type of testing. He did, however, test positive in the RAST(blood test). This doesn’t typically happen but it did for Xander. We stripped those foods out of his diet and he started to get better immediately.

Then almost a year later the same thing happened; chornic diarrhea, FTT, anemic but this time he had some vomiting. Xander had to go back in the hospital for another scope. Again we didn't suspect food allergies. The scope was negative, other than the EE. The immunologist tested Xander and found yet another food allergy. Soy. We were happy. At least it wasn’t something serious. Food allergies got us a quick discharge and home we went.

Since we have all his food allergies sorted out, he has been doing great.

I wanted to bring up food allergies because I want parents of newly transplanted kids to know how common it is, especially EE. Unchecked food allergies make life miserable for our little ones; bloating, nausea, cramping,weight loss, etc… So keep an eye out for it and if you see similar symptoms in your child, ask your doc. If I had known sooner, I'd like to think Xander wouldn't have become as sick as he did.

Last time I didn’t post a picture but today I will. This is Xander about two weeks ago getting ready to race down the pier.. We spent a few hours watching the mullet jump everywhere and even got to see a fisherman cast his net and catch a few. It was a good day.

Life is great. :-)

I won't post until next year so I wish each and every one of you the happiest of holidays and of course best wishes and good health for 2012. (((HUGS)))

A Day in the Life of Weston

I was getting ready for bed and was double checking that I had accomplished all the things on my "to do" list, when I realized that it was my day to post! It's been a busy week, celebrating birthdays and preparing gifts for teachers and friends.

Weston continues to be fabulously boring. :-) Health-wise, anyway. The child definately is trying to shatter every remaining nerve I have left. You may recall in my last post, that I refered to him as "The Destroyer" and "Goat". Well, mister wanted to shake things up a bit and be both at the same time. Putting the Christmas tree up with an overzealous 3 year old and a mischeivious 1 year old is exciting enough. But, lets kick things up a notch. As I was attempting to make our Christmas incident free by only selecting non-breakable ornaments, said 1 year old smashed an off-limits one and proceeded to chomp on the glass shards. LIKE LIGHTENING FAST. Luckily, it was just a small piece and I was able to pick it out of his mouth equally fast. Then, all the horror scenarios ran through my head...what if he swallowed a piece before I got to him...perforated bowel...more surgery. Should I call 911? Take him to the ER?? A frantic call to the pediatrician...she reassured me that he was probably fine, just to keep an eye on him. Good Lord! I am now appreciating the difference between boys and girls. My eldest NEVER did anything like this. Sure, she caused her fair share of mischief; but eating glass? No. I am happy to report that despite his attempts to eat glass, drink shampoo, eat baby wipes, swig contact solution, that he is doing just fine. I know my brother tried to eat staples when he was this age...is it something about boys?? Please tell me I am not alone in this?? You cannot blink around him!

He goes for his check-up in the beginning of January. No labs this month!! Woohoo! And still holding steady on the ProGraf twice a day.

Speaking of January...what a big month it will be! We have everything in order for Weston to start day care part-time. I can't believe I even typed that. I really never thought that this would be an available opportunity in his life. I say opportunity, because this program is amazing. My daughter has been in it since she was 3 months old. It is a program for the teachers and staff's children in my husband's school district. They have lesson plans for the 1 year olds. It is such a wonderful, loving environment and I am so excited that Weston will be able to benefit from it. He really has never had an opportunity to play with anyone else but his sister. So, 85% is happy and 15% is absolutely heart-broken that my baby will be spending this time away from me. But, I know it's what is best for him. **deep breath**

Also, January 28th will be his first transplantiversary!! I'm not going to lie, it's felt like 5 years. But, what an exciting event it is...like his "re-birthday". I am in the middle of trying to plan something special. This day also coincides with the end of our fundraiser benefiting the BA research program at Texas Children's Hospital. If you have a minute, check it out on facebook. There is also a link from the baaware events page (BAMF). So far, we have raised a little over $750 and are 50% of the way to our goal of $1500!! I am so blown away by the generosity out there. It makes doing stuff like this so amazingly rewarding.

Well, until next month...I hope you and yours have a beautiful holiday season.
Ashley

(download)

A Day in the Life of Rowan

1 Year Transplant Update

It has been forever since my last post- I will credit that to a very active 17m old! The past two weeks have literally been the fastest time has ever flown by. We had the blood drive, Thanksgiving x3, Rowan's 1 yr Transplant Anniversary, and National Biliary Atresia Awareness Day!
(And I also haven't taken as many photos lately either... due to the fact we are constantly chasing her around!)

Rowan is doing remarkably well. She is happy, healthy, and getting into lots of mischief. If you're not careful dear things you love can end up in the toilet at our house...

We wanted to do something special for Rowan's one year transplant anniversary. Something we felt like was giving back and raising awareness. The Tuesday before Thanksgiving, we hosted a blood drive and had a great turn out! A majority of the people who donated couldn't recall the last time they had done so, and we thought it was fabulous to get so many people out who don't typically do so! We will have to make this an annual thing :) Rowan has received so many gifts of life, we are excited to give some back!

For Thanksgiving we were able to participate in 3 family gatherings! Rowan had a fabulous time running around everyone's homes. It was an incredibly happy two days we were able to share.

Last Year:

Thanksgiving we were in the hospital at Texas Children's. Chance's mom and grandmother brought us a meal and we heated it up in the microwave. My what a difference a year makes! Rowan was so sick at that time. She had been listed for transplant already. Back then, she wasn't eating and had to receive IV nutrition... although I distinctly remember she actually ate some sweet potatoes. It was a very surreal holiday to say the least. My mom came in that weekend and we spent black Friday roaming the halls of the 12th floor.
Chance worked on Monday and my mom planned on heading back home until the most amazing news ever. We had been waiting 10 days for a phone call, and around 2pm the coordinator called to let me know, there was a possible liver on its way. Tears. Instantly.
From the time of that call to Rowan receiving her transplant there were a myriad of people, tests, and logistics to figure out. OH MY- we heard "no news is good news" 1000 times! There would be no guarantees that this would be Rowan's liver, so it became a waiting/ preparing game. Chance was supposed to work on Tuesday.... should we call the rest of our family to come down... what if this is a no go... The hours ticked by and around 9PM I told Chance to come! The night was sleepless. Several physicians would come in to assess Rowan and talk to us. Daylight came and we felt pretty confident the surgery was a go. November 29 will forever be one of my most cherished days. This was the day our daughter received her gift of life, a new liver. Without it, she would not have made it much longer. We cannot imagine the loss of a child, and thank our angel donor's family for making the choice to give our daughter life. We ask God to hug our angel donor close until we are able to meet. Rowan's gift is a miracle that we can never be more thankful for.

This year November 29th was probably a very hard time for our angel donor's family as well. We prayed for them.
We also celebrated Rowan's life. She is an amazingly strong little girl with a very promising future.

Today we celebrate National Biliary Atresia Awareness Day. Please check out this wonderful video. Rowan and many other miracle babies are in it!

http://video214.com/play/Pk1Qxv9T50ohovMb7gdSSA/s/dark

We could not be where we are today without the love and support of our family and friends. Thank you so much for ALL of the "likes", messages, wall posts, food, free babysitting, etc. We are truly, truly beyond blessed!

Annnnnd: How could I forget?! We went to our GI liver specialist for a check up. Rowan is in the 40% for height and 15% for weight. He also said... "See ya in a YEAR!" wooooo hooooo

National Biliary Atresia Awareness Day!

via animoto.com

National Biliary Atresia Awareness Day!

via animoto.com

A Day in the Life of: Ember - 3 years ago!

Three years ago today, Ember received her gift of life. She is a happy, healthy toddler and she is here with us today thanks to someone else’s sacrifice. Since I just posted an update to her blog, I will copy it here. Tears are welling up in my eyes, again, so I don’t think retyping is a great idea!!!!

...today, at this time, I was in a waiting room at St. Louis Children's Hospital, with my family, waiting to receive calls from the OR to update us on Ember's Transplant. I remember the day like it happened yesterday. Everything is permanently etched into my mind. It is hard to imagine that three years ago, she received her gift of life. While it seems like a lifetime has passed since that point, I also realize that it really isn't that long ago. We have SO very much to be thankful for in those short 3 years. She has grown into a beautiful, vivacious, loving little girl. She is happy and healthy and seems to have no worries in the world. Above all else, even if we didn't have those other things, she is still here.

Her donor angel is thought of every day even though we have never had the chance to know his family. We continue to raise her in a fashion that we would hope her donor family would be proud of. We talk with her continually about what it means to have her gift and try to explain what the true meaning of giving is. I have always tried to be the strong one in the entire Transplant situation, but sitting here typing this blog is bringing tears to my eyes. (That means you have to forgive typos! I can't see the screen here!) It's hard not to tear up when I think of everything she has been through in her short little life. She continues to be one of the strongest people I know.

The further out from Transplant you get, the more relaxed you get. This means meds are missed, I don't panic if sanitizing gel isn't attached to my hip at all times, and I chalk certain things up to the old say "Schtuff happens". One thing that hasn't changed is the feeling of gratitude, an over abundance of love, and a realization of how blessed we are. We have our baby when I know many who do not, far too many who do not. We have come SO very far in such a short time. Ember now has a beautiful little sister that she adores and she is no longer allergic to peanuts. She is doing phenomenal in preschool and loves to spend time learning. Reading is one of her favorite things to do, so we thought that we would donate books to Children's this year to commemorate her transplantiversary. Ember approves. :)

For those of you still waiting for "The Call", don't give up hope. We are here with you and waiting to welcome you to the other side of transplant. We hope and pray that your will have the perfect gift at the perfect time.

My Mother -In - Law found a poem that I would like to leave with. I think that it absolutely beautiful and says all the right things.

MAY GOD bless all donor families and the precious and loving memory of all donors, for they who give the Gift of Life in so doing demonstrate a deep and very profound understanding of another of God's most perfect gifts to mankind: the Gift of Love.

Without the Gift of Love, the Gift of Life through organ donation could not and would not be possible. May all recipients receive the Gift of Life in the same manner and spirit in which it was given: with love and compassion.

May all recipients continue to privately and publicly display their gratitude for this precious gift, now and forever .

May all recipients share the Life and the Love of this gift, and use it to make meaningful and lasting contributions to society and humanity.

May all recipients live life to the fullest each and every day, and in so doing pay loving tribute to their donors and donor families.

May all recipients do more than merely say thanks, may they be given the strength, courage, wisdom and direction to do thanks through their actions, their deeds and their accomplishments, and by their everyday deportment, at all times showing honour and respect for donors and donor families, who so lovingly and selflessly gave the Gift of Life.

May all recipients seek, find, understand and fulfil the purpose for which they have been so graciously chosen to receive this special gift.

To all donor families and the memory of all donors, God bless you. Thank you, we love you. Thank you for the Gift of Life.

(download)

A Day In The Life of The Golden's::Weston the Destroyer

Hello! Happy early Thanksgiving!
I've been reflecting recently about how different things are this year, as compared to last year. About this time last year, we were finishing up a stint at Texas Children's Hospital undergoing treatment for a central line infection/cholangitis (still has not been determined) and testing to be added to the UNOS waiting list. We were all depressed and really struggling to make things happy for the holidays. It was just a really hard time, full of uncertainty. BUT, that has all changed!! This holiday season is going to rock!!

Weston is walking! And into everything...destroying everything. Hence the nickname, Weston the Destroyer. I never realized how difficult it would be to keep a handle on the germs with a newly mobile toddler. WtD's new favorite mobile activities:
1. Touching toilets
2. Eating cat food
3. Eating anything he finds off the floor
In addition to the aforementioned, he loooooves to eat paper and baby wipes, pulling the wine bottles out of the rack, emptying drawers and trying to get into the cleaning products. Oy!! He is a little monkey.

We recently moved him into his own room. Yes, you read that correctly. He has slept in our bed since he was born. I think the transition was harder for Mommy than baby. But, isn't that usually how it goes? Speaking of big changes and transitions...the topic of Day Care has been coming up quite a bit recently. There have been some changes at my hospital and I am looking for another shift...a necessity financially, but that would require Weston to go to Day Care. His transplant team is totally fine with it, come January (his 1 year transplantiversary), but, again Mommy has reservations. It is so hard to think about not spending all day with him M-F, like I currently do. But, having gone through this already with Emily, I know that this particular day care system is amazing, and he would be so happy to be able to play with kiddos his age. Argh, you gotta let them all fly out of the nest at some time...even our liver babies.

What are your plans for Thanksgiving?? We are flying to New Orleans to have Thanksgiving with my grandmother and extended family. Two connecting flights, with a three year old and a 15 month old...pray for me!!

Counting our amazing blessings,

Ashley
http://thegoldengram.blogspot.com/

(download)