The biliblog. http://baaware.posterous.com Featuring 'A Day in the Life' by contributing BA families. posterous.com Tue, 07 Feb 2012 11:57:37 -0800 A Day in the of Dylan... http://baaware.posterous.com/a-day-in-the-of-dylan http://baaware.posterous.com/a-day-in-the-of-dylan
Dyl_and_noah

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. 

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Mon, 23 Jan 2012 12:22:00 -0800 A Day in the Life of the Colby Kids http://baaware.posterous.com/a-day-in-the-life-of-the-colby-kids-51722 http://baaware.posterous.com/a-day-in-the-life-of-the-colby-kids-51722

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. 

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Mon, 16 Jan 2012 22:54:35 -0800 A Day in the Life of Weston::Jinxed http://baaware.posterous.com/a-day-in-the-life-of-westonjinxed http://baaware.posterous.com/a-day-in-the-life-of-westonjinxed
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/

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Wed, 21 Dec 2011 19:40:00 -0800 A Day in the Life of the Colby Kids http://baaware.posterous.com/a-day-in-the-life-of-the-colby-kids-24550 http://baaware.posterous.com/a-day-in-the-life-of-the-colby-kids-24550

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.

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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)))

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Thu, 15 Dec 2011 23:07:43 -0800 A Day in the Life of Weston http://baaware.posterous.com/a-day-in-the-life-of-weston http://baaware.posterous.com/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

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Thu, 01 Dec 2011 18:58:46 -0800 A Day in the Life of Rowan http://baaware.posterous.com/a-day-in-the-life-of-rowan-76339 http://baaware.posterous.com/a-day-in-the-life-of-rowan-76339

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

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Fri, 18 Nov 2011 11:55:01 -0800 A Day in the Life of: Ember - 3 years ago! http://baaware.posterous.com/a-day-in-the-life-of-ember-3-years-ago http://baaware.posterous.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.

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Tue, 15 Nov 2011 18:35:10 -0800 A Day In The Life of The Golden's::Weston the Destroyer http://baaware.posterous.com/a-day-in-the-life-of-the-goldensweston-the-de http://baaware.posterous.com/a-day-in-the-life-of-the-goldensweston-the-de
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/


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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Wed, 26 Oct 2011 14:14:21 -0700 A Day in the Life of: Rowan http://baaware.posterous.com/a-day-in-the-life-of-rowan-63186 http://baaware.posterous.com/a-day-in-the-life-of-rowan-63186
Monday Rowan had her 15 month check up with her pediatrician.  She's actually 16 1/2 months, but we've been busy seeing all of her specialists, so I think we're pretty well covered in the drs visits realm...
She weighed in at 21.2lbs and 39in. (Growth Chart Stats: 10% for weight and 25% for length)
She can say about 10 words right now, so her pediatrician was pleased with her cognitive development. Nothing else to report- it was an uneventful appointment compared to most we have.

Lately we've been doing a lot of walking and playing outside- the weather has been gorgeous! Pictures from the pumpkin patch are attached :)

Rowan is really progressing with her walking skills. She's has grown so much in every way over the past few weeks.

She's back down to only ONE medication, her Prograf!  We still check her blood pressure twice a day and occasionally have to give her a dose of amlodipine. But since she's now off the prednisone, her blood pressure is much better.

Today I'm thinking she's hitting a growth spurt- eating everything in sight!  Except meat!  She loves fruit and vegetables, breads and crackers, yogurts, but no meat. We buy the Greek yogurt and feed her as much as we can with high protein foods.

Her white blood cell count is two and she is still receiving IVIG treatments, so we still stay pretty secluded.  However, we have eased up a bit, but with flu season we are not taking any chances! It's worth it to have Ro stay healthy and out of the hospital!!!

November will be Rowan's 1year transplant anniversary!  We can't wait to celebrate. I'm working on a video to share with everyone which documents her journey.

Thanks!
Megan

www.rowansliverandonions.blogspot.com


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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Thu, 20 Oct 2011 11:32:47 -0700 A Day in the Life of the Colby Kids http://baaware.posterous.com/a-day-in-the-life-of-the-colby-kids http://baaware.posterous.com/a-day-in-the-life-of-the-colby-kids

On October 16th we celebrated Xander’s three year liver anniversary!!  THREE YEARS!  I can’t believe it.  My son’s angel donor gave us three years or 1095 days or 45,625 hours (and counting!) with our son we might not have had otherwise.  I can never thank him or his family enough.  He gave the ultimate gift by paying the ultimate price.   We will never forget what he did and honor his memory through the life of our son.

 

The emotions of that day are still very raw but the whole experience is becoming surreal.  I know we were there, I know my son had a major surgery at 10mos old and I know it was the most heartbreaking experience I’ve ever been through but it’s almost becoming like a distant life.  Our life now is nothing compared to what it was.   We have settled into our new normal.

 

Post-transplant life is a whole different world.   While his weakened immune system is always a concern and it may influence decisions on where we go or what we do, it doesn’t rule our lives like liver disease did.  Sure, we may have to wear masks on an airplane or avoid malls during peak times but that’s ok.  Xander is here and he is healthy!   It is beyond awesome.  ((((♥♥ Angel Donor ♥♥)))) 

 

I wish I could go into more detail about our new life but I am furiously preparing for Xander’s wish trip.  He was granted a wish by the wonderful people at Make-a-Wish and we are going to ……drum roll…… DISNEYWORLD!!  We are leaving Saturday morning.  I am so excited I’m about to burst.  There is absolutely no way we could give him a vacation such as this and I am beyond grateful to MAW and Give Kids the World for giving Xander a week he’ll, we’ll never forget.  

Wish us loads of fun!! 

xxxooo

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Sat, 15 Oct 2011 09:57:31 -0700 A Day in the Life of the Golden's::TCH Check-Up http://baaware.posterous.com/a-day-in-the-life-of-the-goldenstch-check-up http://baaware.posterous.com/a-day-in-the-life-of-the-goldenstch-check-up
Hello from the Golden's in Austin!

We recently went for our check-up with the Transplant Team at Texas Children's. Everyone was SO excited to see our little man. And, we were happy to show him off. At 14.5 months and 8 months post transplant, Weston weighed 27lbs 8.9oz (88th percentile) and was 31.8" tall (78th percentile). He is a BIG BOY; growing well, and getting strong! We couldn't ask for more! His liver panel showed a slightly elevated, but still within range, ALT. Everything else was perfect, so they aren't worrying about it and we will recheck toward the end of the month. You know, that has been one of the hardest, but most liberating lessons I have learned through this journey...if the team isn't worried, I'm not worried. Letting go of the unnecessary worry has probably kept me from going insane this past year. He's currently on ProGraf (immunosuppressant) twice a day and Norvasc (blood pressure) at night. And aside from a check-up and a few catch-up vaccinations with his pediatrician next week, we won't have another doctor's appointment until January!!

Our life is blissfully boring at this point and we are relishing it! We are looking forward to Halloween and really enjoying the holiday season this year!

Take Care,

Ashley
http://thegoldengram.blogspot.com/


"How far that little candle throws its beams! So shines a good dead in a naughty world." ~William Shakespeare

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Tue, 11 Oct 2011 10:11:13 -0700 A Day in the Life of Ember http://baaware.posterous.com/a-day-in-the-life-of-ember http://baaware.posterous.com/a-day-in-the-life-of-ember

We have been blessed to be able to say that Ember is only on one medication right now.  She takes her Tacro (immunosuppressant) twice a day.  It is a far cry from the 14 meds at two to three times a day we came home with!  As of today we are 2 years and 6 days away from Ember’s Three year transplantiversary!  It is crazy to think that it has been that long, but also that short of a time ago.  As we get further away from transplant, we get more and more relaxed about certain things.  This, unfortunately, includes forgetting to give meds!  Yes, yes, I am a horrible liver mommy and I forget to give Ember her Tacro more times than I would really like to admit.  Most of the time I remember right after she has fallen asleep.  The good thing is, as a result of this, she takes her meds in her sleep (Still a liquid through a syringe)!  I can’t tell you how lucky I am to have a child that does that!!!!!  Also, she is getting old enough to remind me that I didn’t give it to her.  Feel like SUCH a bad liver mom when she does that!  So, that is the first problem we have when it is medicine time.  The second problem you ask?  Her 22 month old sister thinks that she needs to take medicine too.  Every time her sister gets it!  Let me tell you, there have been quite a few melt downs by my little Autumn because she doesn’t get medicine like her sister does.  To circumvent the melt downs, we have started to give her an empty syringe or one with a little bit of water in it.  I know we will have to break that habit when she is older, but right now she doesn’t quite understand why she can’t have medicine when sissy has it.  Such is the life of having two little ones I guess. 

We are getting ready to take a trip to FL next week.  It will be the first time either of them will see the ocean.  We are also going to take them both to Disney for a day.  When they get older, we are going to make a whole vacation out of Disney, but not yet.  I am SO very excited about watching both of them play and experience the things that I absolutely love about FL for the first time!  This is going to be only our second trip out of the state since Ember’s transplant and I have to say I am a little nervous.  I have already looked up the nearest Children’s Hospital to where we are staying.  We are going to be visiting family so I am really hoping everything works out smoothly.  Our last Trip was to New Orleans last summer.  I was a little nervous about it too, but I had family there too so I knew we would be alright if something were to happen there too.  I am sure that as time goes on, I will be less and less nervous about going in trips, but that time hasn’t come yet.  I have even packed Ember’s old Epi-Pen just in case.  It doesn’t expire until Feb so I just threw it in the suit case.  She doesn’t need it anymore because she is no longer allergic to peanuts, but I can’t help feel that if I don’t pack it, we will need it. I know, I know, I worry.  A LOT.  However, I am also prepared.  I have a plan of action in my head and am ready to implement it at a moment’s notice.  Speaking of Disney, I have never been so I am probably going to be just as excited or even more than Ember will be.  I’m not sure how Autumn is going to react since she is still a little small.  I hope they both have a good time, but I really hope Ember enjoys it.  She has been asking to see Tinkerbelle almost since she could talk and now she is going to get that chance!  I am also going to introduce the girls to my favorite mammal ever.  The Manatee.  I hope they find them as beautiful as I do!

So, life with Ember rolls on even though mommy forgets meds.  (And occasionally gets a call from her transplant coordinator because she is late for labs! ;O )  We are planning family vacations now and going doing more activities with both girls.  We go back to clinic in November to make sure the team is happy with her progress and her liver is still happy as well.  Hopefully we will have more good news from them!

Ember’s Journey started here: www.caringbridge.com/visit/emberzstory

Follow me here: www.diaryofjeannie.blogspot.com

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Wed, 05 Oct 2011 11:17:57 -0700 A Day in the Life of Dylan http://baaware.posterous.com/a-day-in-the-life-of-dylan http://baaware.posterous.com/a-day-in-the-life-of-dylan

After the ups and downs with Dylan’s liver numbers the past few weeks I am mentally exhausted. It sure is hard being pregnant and dealing with all of this. I hasn’t helped that I have been filling in for a dental office I used to work at. After not working for nearly nine months it really does drain me, although and it does serve as a small mental break from Liverland. We are getting labs done tomorrow to see if the numbers are still going down. If by chance his numbers are up again you may hear of a pregnant lady gone crazy on the news…just saying. I have so much more anxiety with labs now than I did pre-transplant. Dylan’s labs were always normal and rock solid even with a sick liver, but now it seems they react to so much more and jump all over the place. I am just praying for stabilizing numbers.

 

Last weekend we did something we never would have dreamed of before transplant. We decided last minute to make a trip up to the Lake Tahoe area. Last minute trips were never an option before. The possibilities of what could happen while we were away scared me to death and I did not want to be too far from our doctors. When the opportunity came to us last week I jumped at the chance. It was so nice that it was not even a thought in my mind until we got there. It made me so happy that we were able to be “normal” and just get away for something fun. I am looking forward to doing it again soon. It was something we all needed. Dylan had a great time. There was no snow yet, but he just seems to love it up there. His asthma all but goes away with all the clean air, not to mention he seems to really enjoy being surrounded by nature. Being there brought back memories of the last time we were there. It was for Dylan’s Make-a-Wish trip. We were about to face the hardest moment of our life and just 8 short months later it seemed like such a distant memory. It still amazes me how much transplant has improved my little guy’s life. He gets to live it now and that warms my heart.

 

This Friday will be exactly 8 months since Dylan’s transplant and it is also Noah’s birthday. Dylan’s hero will be celebrating his 33rd birthday. This year we have to reasons to celebrate this man. I knew he was amazing when I met him and I knew he was the one I would marry. I just never knew I could love him any more than I did eight months ago, but I do. He is our hero and we plan on celebrating this day to the fullest. Happy birthday Noah…we love you and the sacrifice you have made for Dylan.

 

- Amber

www.dylanwlevy.com

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Wed, 05 Oct 2011 03:24:08 -0700 A day in the life of the Oliverio - Hernandez http://baaware.posterous.com/a-day-in-the-life-of-the-oliverio-hernandez http://baaware.posterous.com/a-day-in-the-life-of-the-oliverio-hernandez

Hello BA families. We are the Oliverio – Hernandez.

My name is Francisco Oliverio and with my wife Victoria hernandez we had our first baby Pedro Oliverio in April 28th 2010.

We are from Argentina but he was born in Monticello Indiana because I was working in a Dairy Farm in Fair Oaks IN.

We lived in the States 2 and a half years and now we are back home since December 2010.

Let talk about our warrior Pedro. He is the most happy baby I ever seen.

He was born with 7 lbs and some ounces. I don’t remember. He seemed to be very healthy. Labs were OK.

He started to look a little yellow after his baptism (May 30th) and his first pale stool was June 19th night at his Pediatricians house.

His Pediatrician was also from Argentina and we were at her house having a BBQ that night when she changed his diaper and asked us….

Is this his first pale stool ??? Yes we say…

15 minutes later we were at the Hospital in Crown Point checking total Bili.

At 3 am they called me with the results… 9 total Bili…

At 8 am we were at ER in Riley Children’s Hospital in Indy.

That was my first father’s day…. What a way to start.

After a few days there with Labs, HIDA etc. etc. he was diagnosed with BA.

We were alone and very scared so we called home to our parents and they flew 24 hs. later.

That changed everything… In those moments support and a hug is all you need.

June 24th he had the Kasai (Alan Ladd was the surgeon) at Riley and everything seemed to be great after that.

His Bili went down from 11 to 4 in one week and to 1 in 3 months.

When everything was controlled we decided to come back home to be closer to our family.

So here we are… very happy and enjoying Pedro every day.

His labs are OK and we go to the GI every other months. Bili is 1 or under most of the times.

He is taking 5 or 6 meds every day but that doesn’t matter as long as he wake up every day smiling and ready to face another day.

He is 1 and a half years old now and growing.

That’s part of our story. Here you have some pictures of us so you can know us a little more.

Thank you very much Jennifer to give us this space.

Good luck to all the Liver families and enjoy each and every day with your babies.

English is not my first language so sorry if I had some spelling errors.

Francisco Oliverio

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Mon, 26 Sep 2011 19:54:27 -0700 A Day in the Life: Meet the Sebek's http://baaware.posterous.com/a-day-in-the-life-meet-the-sebeks http://baaware.posterous.com/a-day-in-the-life-meet-the-sebeks Hello!
My name is Megan and my husband Chance and I are super blessed to be the parents of our daughter Rowan.  Being a first-time parents is hard, not to mention having a child with BA.
Chance and I are both RN's in the ICU, but since Rowan's birth I have only worked a few shifts here and there.  Our knowledge of nursing has made it much easier to understand the medical process of BA, but no easier emotionally. 
Rowan was admitted to the NICU after birth and stayed for 2 weeks due to some initial issues breathing. Countless lab draws and diagnostic procedures later, Rowan underwent the Kasai procedure at 3 1/2 months old.  Unfortunately, the surgery was not a success.  Her liver numbers never improved.  By the time October had ended, Rowan was experiencing all of the symptoms of liver failure; ascites, inability to clot, severe jaundice, and malnutrition.  She was admitted and received FFP, albumin, lasix, TPN, and tube feeding until her gift of life arrived.  Ro was placed on the liver transplant list with a PELD score of 32.  We watched her condition drastically worsen for 10 days before we received the call. 
On November 29th, Rowan received her gift of life.
The ascites returned after transplant and complicated her progression.  She stayed in the PICU for a month and was finally released another month later after spending Thanksgiving, Christmas, and New Years there.  Going home with a PICC and NG tube was easy for us as nurses to care for, but it sure wasn't fun. 
We were settling into life as we know it, until Rowan then was admitted for Autoimmmune Hemolytic Anemia.  A month and a half later, Rowan was finally discharged, but we still have no answers as to why she developed that condition.
Ultimately, our lives are scheduled around Rowan and her labs or appointments.  When we aren't tied down, we love to spend time together as a family. 
We are big on schedules and usually stick to our morning walks and nap routines pretty well. 
Every day we thank God for our angel donor.  Rowan has taught us to live every day as a gift.  We try to keep a positive attitude and a good sense of humor in everything. 
If you ever have any questions, shoot them our way!
Megan

www.rowansliverandonions.blogspot.com

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Thu, 22 Sep 2011 07:37:00 -0700 A Day in the Life of the Colby Kids http://baaware.posterous.com/71687801 http://baaware.posterous.com/71687801

Hello BA world!  Nice to meet you.  I'm Blair.  I was flattered to be asked by Jen to be a part of this blog and excited to be one of the fabulous families that will be posting here about their BA journey and post-transplant lives.  This road we are on is not an easy one and it comforts me to be surrounded by people who, frankly, get it.

 

As for me, I am a Mom, wife and a photographer.  I have been with my husband for about 17 yrs and we’ve been married for about 14 of those.   His name is Ron and he is my rock.  Ron and I had decided not to have children but my son Lincoln had other plans for us.  Oops (a very good oops)!  J  We had him on March 7, 2006.  He was perfect..8lbs 12oz, 21.5”.  We fell in love with being parents and decided to have another child.   My youngest, Xander, was born on Nov. 17, 2007.  He was perfect too.  He was 8lbs and 21” long.  We were thrilled to have another son.  Brothers!  Unfortunately, our elation wouldn’t last long.

 

Since I had gestational diabetes with Xander, the docs had to monitor his blood sugars.  He would get poked on the foot periodically to check his level.  Our most excellent pediatrician noticed he was a tad jaundice and decided to check his bilirubin, not just the total but his direct and indirect.  Thank God for him.  He had seen Biliary Atresia once before and as soon as the test results came back he knew what to do.  He immediately sent Xander to a GI for more testing.  This is where our BA story begins.

 

As you will see in future posts, my favorite hobby in the world is photography.  I documented Xander’s journey with BA and his transplant.  I am not as eloquent with words as I would like to be so I’ll let my photos tell you his story…

 

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Thu, 15 Sep 2011 07:38:14 -0700 A Day In the Life::Meet The Golden's http://baaware.posterous.com/a-day-in-the-lifemeet-the-goldens http://baaware.posterous.com/a-day-in-the-lifemeet-the-goldens

Hello!! We are the Golden’s; a family of four living in Austin, TX. Billy and I have been married for 6.5 years. I am Registered Nurse working part-time every weekend, so I can stay home full-time with the babies. I currently work in Surgery at a Trauma Center. When I am not trying to keep the house at a livable level of messy, I enjoy crocheting. Actually, I am slightly obsessed with it. Weston received a few blankets from Project Linus while in the hospital, and I was so touched by the kindness and generosity of the “blanketeers”. I taught myself how to crochet via YouTube and have been able to make a few blankets to donate to our local chapter.  


Billy is the Technology Coordinator for a middle school campus and also teaches a couple of technology based electives. He is a former high school and middle school coach.  Billy is a “good-ole Texas boy” at heart. He loves sports, mainly Texas Longhorn and Dallas Cowboy football. When he actually has free time, he enjoys playing golf.


Our schedule is a necessary evil and a blessing in disguise all at once. Billy works Monday thru Friday and I work all day Saturday and Sunday…leaving us very little time together and as a family. Our closest family member is an hour and a half away; so we often feel isolated. But, being “free” all week has been instrumental in getting Weston the care he needs. When you have a sick child, the doctors tell you when they want to see you next; they don’t ask what works with your schedule. When Weston was in the hospital, our opposite schedules allowed one of us to be with him at all times without having to be excessively absent from work.


Emily, 3 years, is our oldest. She goes to pre-school part-time. You’ve never seen a kid love school as much as this one! When she is home with Mama and Weston, we try to keep her active booty busy with swimming and cheer/tumbling lessons. Emily is the best big sister you could ask for. Even at such a young age, she is very sensitive to the fact that her brother was sick. She’s made many trips to the hospital to visit and was a super-star during the two months that our family was torn between Houston and home. She is definitely a handful at this age, but we can’t imagine life without her.


Weston, 13 months, is our Little Man. He had his Kasai at 6 weeks of age. It stabilized his liver disease for about 2 months. By the time he was 5 months old, he was in full blown liver failure.  He was admitted to Dell Children’s Medical Center (Austin) and then to Texas Children’s Hospital (Houston) to receive TPN and Albumin in January until he received his transplant. The morning of January 28th, 2011 will forever be burned into my memory. I remember it, like I remember the day I was married and the days my babies were born. It was the morning that we got “the call”. We were still inpatient, so it was more like a surgical visit. That evening, Weston received a whole liver from a donor on the East Coast. He is B+, rare. Not only that, but the donor was in an outside region. SO many things had to line up correctly…and they did.


His post-transplant recovery was a little bumpy. Due to pre-transplant fluid imbalances (from liver failure) and the size of his new liver, it took about a week for him to come off of the ventilator and out of PICU. He’s had temporary feeding tube issues, wound dehiscence, and a myriad of contagious illnesses since, but he is HOME. To look at him, you would never know this Little Man has been through so much. His eyes are bright, cheeks are plump and rosy and has a roly-poly tummy to go with it. He is so happy and his smile will just melt your heart. He just celebrated his first birthday and is learning to walk. He loves to snuggle, play and throw food on the floor. He is obsessed with Shrek and Yo Gabba Gabba; we watch them almost every day. Little Man loves to eat! Milk and veggies are his favorite things. He is very cautious of his actions…but Billy and I still think there is a future Texas Longhorn Football player lurking inside of there.

I often think about our Donor Angel and their family. What they must be feeling… Weston’s donor has become part of our family. We celebrate their life and gift every chance we get. We gave him life, but they gave him a second chance.

 

Until next time,

Ashley

Growing Up Golden

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]]> http://files.posterous.com/user_profile_pics/1381862/DSC00987.JPG http://posterous.com/users/1kQPH7Y8fR29 OwnStL OwnStL OwnStL Sun, 11 Sep 2011 06:55:09 -0700 A Day in the Life of the McCoy's http://baaware.posterous.com/a-day-in-the-life-of-the-mccoys http://baaware.posterous.com/a-day-in-the-life-of-the-mccoys

So, I’m up next for introductions!  Here goes….I’m Jeannie and I have two beautiful little girls and a great husband.  Our oldest daughter, Ember, had BA.  (Or is it has?  I always fumble with that since she has a new liver! J )  She is SO in love with her little sister Autumn.  And let me tell you, having two little ones 17.5 months apart is tiring at times.  It is also amazing.  As for me, I am a stay at home mom who is NEVER home since school started.  For me, not the girls.  They go to preschool so I can go to school in the hopes of getting into nursing school one of these days!  I have been a stay at home mom since Ember was 8.5 months old, 2 months after her transplant, and it has been the best decision we could have ever made for our family. 

I can honestly say that I am a better person for having both of my girls in my life.  With Ember, I have learned more medical terminology than I already knew.  I have found an inner courage, and peace, that I needed to get through the many days we were in the hospital.  As well as some patience to not go off on random people in the store when they would tell me that she had such a beautiful “tan”! I have learned that you are never too young to have a great sense of humor.  Despite everything, she laughs and giggle at the smallest things and then it makes me laugh.  We all need a laugh sometimes, why not take after a 3 year old when you do it?  With Autumn, I have learned the deepest sense of wonder about the world around me.  I have also learned that sometimes you just need to yell at things to get them to work.  Again, I have learned even more patience to not go off on random people, especially when I was preggo, when they would ask if she was going to be “normal” since her sister wasn’t!  No, she isn’t normal.  Normal is over rated!  I have also learned that biting is NOT o.k.  Now, if she would learn it, we would be good!

I hope that those of you reading this as well as other posts on this blog find a sense of acceptance, familiarity, and hope.  This journey will change you and those close to you.  It will be for the better, but some of it might scare you a bit.  As Amber posted earlier, I also know my kids better than most parents know their children.  Not just my BA baby, but both of them.  That doesn’t mean that there aren’t times that I don’t second guess myself.  There are LOADS of those moments, but that is what being a parent is all about.  Well, that and showing embarrassing pictures to their boyfriends later in life! One piece of advice I always give new BA families is to not be afraid to speak up.  Doctors and Nurses are people too and you have a right to have their full, undivided attention when it comes to the care of your child.  If you need help speaking up, get someone who can help you do that. (Raises hand – pick me!  Ooohh!  Me!)

Liver disease changed our lives and will continue to help form our lives as both girls get older.  Our girls will grow up knowing the true meaning of giving without hesitation. Ember received her second chance at life and we live it every day.  I have always said that until something tells me that what I am doing is wrong, we are going to let her live that life.  That has been especially true ever since her little sister came along.  When there is a bump in the road, we manage.  We have to.  There is no second choice when it comes to our kids.  They are truly our future and I am so very glad to be part of it!

-Jeannie

Ember’s Journey started here: www.caringbridge.com/visit/emberzstory

Follow me here: www.diaryofjeannie.blogspot.com

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