Thursday, December 16, 2010

2 years and counting...

I am seriously slacking!  I missed posting about an very important event in Ember's life.  Her two year transplant anniversary.  So, here is a catch up on that as well as a few other things that have been going on since then.

November 18, 2010 marked 2 years since Ember received her life saving gift.  It was a very special day for all of us.  I silently cried that day knowing how truly blessed we are.  I cried because I want to much for her to know her donor family, but I also cried for them knowing how hard it must be for them this time of year.  As I have posted earlier, they moved without leaving a forwarding address with the organ donation agency so we have no way of contacting them.  However, I do think that I know who is her donor and was very tempted this year to try to contact them.  I did decide to wait in the hopes that one day we would hear from them.  I also decided that contacting them on my own would be a good idea at another time in the year.  At this time it might just be too hard on them.  Also, I keep thinking to myself, "What if I'm wrong?".  I would hate to bring more pain to a family than they already have. 

Last year we decided that every year for Ember's anniversary we would get together as a family and go out to a restaurant to celebrate.  We aren't going to do presents or anything like that since, lord knows, the child has more toys and things than she already knows what to do with.  So, this year my mom made green colored white chocolate lollipops that were in the shape of an awareness ribbon for everyone who came to dinner.  They were yummy!  Ember thoroughly enjoyed hers.  I made Ember a cake that was in the shape of an awareness ribbon as well.  Once she saw that, eating anything else went out the window.  The child has the biggest sweet tooth!  And Great Grandma Lola just might have gotten her a present anyway.  It was a cute little snow globe.  Ember loves it.  She is still carrying it around the house and asking me to shake it up for her on a daily basis just about.  It was nice to visit with family and celebrate how blessed we have been. 

Since then, Ember has help us celebrate her sister's 1 year birthday. (6 days after her anniversary) She is also really starting to get into this whole Christmas thing.  She loves all of the decorations.  She even helped Mommy, Grammy J, and Bob decorate the tree this year.  Amazingly it has remained in tact.  Ember even guards the tree from her sister right now.  I sometimes hear her saying "Almond!  No, No" and then she claps her hands twice.  Yes, she calls her sister Almond.  I guess Autumn is just too hard for her to say.  It makes me smile. :)  She is very interested in the neighbors blow up snowman  so we were gifted a blow up Santa for her to look at as well.  She keeps asking us "No pop?" which means that she is asking whether the Santa will pop or not.  We keep repeating "No, Santa won't pop" like broken records. 

Unfortunately, a week ago we went to the ER with her because she developed some alarming symptoms in the span of about two hours.  She had some issues with drainage from her eyes and in a matter of two hours she developed a fever of 101.9, a horrible cough, and she was extremely pale.  While I called the Dr's exchange she sat on Maw Maw's lap and complained that her eyes were hurting.  As I was on the phone with the Nurse from the exchange, she told Maw Maw that her head was hurting also.  So, the nurse told us just to take her to the ER.  So, at 9p.m. at night we were heading to the ER.  When we got there, she was still running a horrible fever so they had us take her jammies off of her.  They did blood work, a chest X-ray, a nasal swab (which made her OH so happy - did you sense the sarcasm?) and looked in her ears.  They told us that her ears were fine and that her chest x-ray and blood work were showing what appeared to be a virus.  We luckily got to come home.  Over the weekend the cough got worse, but the eyes and fevers got better.  However, she lovingly shared her virus with her sister.

After going to see the pediatrician with both girls on Tuesday it seems that Ember now has an inner ear infection as well.  Her first, and only I hope, ever.  Her sister has the virus, but not as bad.  Antibiotics for Ember and eye drops for baby sissy.  Now, mommy and daddy have it too.  I know that I am always telling her to share, but this is one thing she could have kept to herself. 

Hopefully we are all on the mend and will be good by this weekend.  I want to try to take them to see Santa.  Last time we tried to get pictures, it didn't work out so well.  We will see what happens this time! 

Friday, October 22, 2010

Our lives have changed....

For the better.  Two years ago today Ember was placed on the transplant list.  Two years ago today we started what could have been a very long wait for her life saving gift.  Two years ago today we knew that our baby was sick, but we really had no idea how severe it really was.  Yes, she was being placed on the transplant, but it wasn't final for us until she was actually transplanted.  It was always one of those hopes that she would magically get well enough to be removed from the list.  It happens, but not often. 

Since that day, our lives have changed in the most incredible ways. We have had to opportunity to watch our little girl live.  And by live, I mean thrive.  We have had the opportunity to meet several families affected by BA and it has been amazing.  We have had the opportunity to meet some of the best nurses, surgeons, PCA's, and volunteers in the world.  I can honestly say that without any of them, we wouldn't have made it through to today.  They helped keep us sane while we tried to help keep others in our position sane.  Since that day, we have also felt the loss of several beautiful liver babies.  Even though we never met them, we felt the loss all the same.  I can't even begin to count the silent tears I have cried for each and ever liver baby that we have lost or that is going through a rough time.  I hope and pray that every liver baby can be as blessed as Ember has been.  She has had relatively few complications since her transplant, and most of those complications have been unrelated. 

She has the peanut allergy and she is a very rashy baby. We worry a lot about the rashes because they seem to just come up out of the blue.  However, if that is all we have to deal with, then I would say that we are very blessed.  Two years ago, I would watch a very tiny 4 1/2 month old yellow baby sleep a lot.  I would hold her wondering when she would crawl or even walk and what our future held.  If I had only known.  Many liver moms told me that the other side of transplant was amazing, but it just didn't click until I was there.  Within days she was a pink baby!  As she grew she became healthier and more active.  She never did crawl by the way.  She just went straight to walking!  And now, you just can't stop her! 

Two years ago today we learned the true meaning of support.  I can only hope that we can provide the same type of support to others as time goes on.  And hopefully, one day, we won't need to because they will find a cure for BA.  Thank you to everyone who supported us then, continue to support us now, and will support us in the future.  It means more than we can say and we love you for it.

Sunday, July 25, 2010

Enjoying life

It has been entirely too long since I have made an update on Ember.  I really think that it has been out of mommy being lazy and well, there has just been life happening.  Nothing really liver related.  Well, that's not entirely true.  We are still doing monthly labs.  They continue to come back normal every single time.  We are truly blessed.  Also, on July 9th, Ember had what is called an IGFR test.  The way it was explained to us is that it is a test that will help determine her kidney function.  The reason she had this test is because her medicine can damage her kidneys.  Her test came back completely fine.  We have no worries. Very much a relief.

While we were getting her test done, I noticed a Dr. that looked very familiar to me.  I didn't mean to interrupt him, but I was SO excited to see him.  It was Dr. P.  The Dr. that helped to diagnose her with BA almost 2 years ago now.  It was such a treat for me to get to introduce her to him as the thriving 2 year old she is now.  I don't think that he has seen her since her Kasai procedure.  He was always so sweet with her.  He would come in and just talk to her and caress her hair as she was sleeping or just lying in bed.  I really felt like he cared for her as if she was his own.  She was just a tiny 11 week old baby then and now she is a active toddler.  I wrote him a quick thank-you note with her website address on it and gave it to him before we left.  We found out that after that week, he was moving.  Children's lost a great Dr., but another hospital has gained him and I hope they know how lucky they are.

Other than that, we have just been having a normal life.  It's funny how I always thought that I would never be able to say that about her.  I was SO wrong.  Ember is absolutely in her 2's.  She throws tantrums, tells us "No, no, no" A LOT, and loves on her sister more than I could ever ask.  We also had a photo shoot with some other BA families since I have updated last time.  It was so great to get to meet others that were pre and post transplant.  She was her usual self.  There is even a picture where she is holding her hands out to hold a small baby named Willow.  We kept telling her that she couldn't hold the baby! Ember didn't care, she was determined to hold her.  She settled for touching her and saying "Awww Baby" a lot.

She has been incredibly understanding with her sister as well.  Four weeks ago I fell with her and ended up breaking her leg.  She has been in a cast of one type or another since.  Ember has had to deal with mommy showing a bit more attention to sissy because of that and all in all she has been great.  There have been moments where she earned herself time out, but I think that is the 2 year old in her.  Tomorrow we go to get the cast off and I am sure Ember is in for a reality check.  I truly think that her sister is going to give her a run for her money! 

On a sad note, we did learn that her donor's family moved and left no forwarding address with the Organ Procurement Agency. It was a very sad day for me.  I had envisioned so many times getting to introduce Ember to the family.  Getting to let them see they type of little girl she is growing into. The compassion she feels, at 2 years old, for others.  I knew that it was always a possibility that we would never meet them, but I hoped that wasn't going to be the case for us.  I have decided that we are going to continue to write letter's to her Angel, but we will save them just in case we end up hearing from them.  And if not, maybe they will help someone else find the words to write to their donor family. 

I hate to leave this update on a sad note, so here's a cute thought.  Ember's hair is now just long enough to put into pigtails!  It is the most adorable thing I have seen yet!!!!  I will try to post pics soon.

Sunday, May 30, 2010

2 Years Old

Our little Monkey is officially 2 years old today!  I can't believe she is 2.  It doesn't really seem like we have had her in our lives for that long.  I know that in the grand scheme of things 2 years is nothing, but it is a lot for us.  Especially considering there was a time where we might not have made it to this point.  Here is a tiny look back at the past two years.

This was taken right after we got to our room when she was born.  I had a c-section so I was not tired in the least!  So happy to see her finally here.

This is Ember with her Great Grandma at almost 2 months.  This is one of the only pictures I have of them together.  By the time Ember was born Grandma was suffering from the horrible effects of Dementia and Alzheimer's.  She may not have remembered much, but she always asked where Ember was when we went to see her.  She loved Ember so much and I am so happy that they got to meet.  Ember is so much like her Great Grandma that it is a little scary.  RIP Grandma.  We love you.

This is two days after Ember's first surgery. She was just 3 1/2 months old.  Looking back, I now know how yellow she really was.  We were in the hospital for a total of 16 days after that first surgery.  This was taken right after feeding her a measly 2 ounces.  It was one of the few times she didn't throw it back up all over me.
This was taken on 11/18/08.  The hardest day of my life so far.  This was in the waiting room just before handing my baby over to a team of surgeons for her liver transplant.  She was still all smiles even though she hadn't eaten anything for awhile.  She went through a surgery that was about 6 1/2 hours.  That day her life was saved due to someones selfless act.  We love and thank her donor angel every day.

This is one of my most favorite pictures of her.  This is the first time she wore her snowsuit.  We were on our way to a clinic visit and it was extremely cold.  I was excited to get her in it.  She was 6 months old here. Only about 20 days after her transplant.

Skipping ahead just slightly, this picture is another one of my favorites.  This is a few days before she turned 1.  She was sitting at the front door just watching the world go by.

Ember at 16 months playing "Soooo Big".  She was also trying to use the box that is right in front of her to stand on so she could reach the tray of her highchair.

This is just a few days after we brought her little sister home. She is so in love with her.  This was at 17 1/2 months.  She still always wants to hold her.  It is too cute.

This is our little Monkey today.  This was taken just a few days ago.  The dress she is wearing is actually a dress that her Great-Grandma made.  She made it for me when I was Ember's age.  I can't believe that she has come so far.  Today she is a normal, happy, healthy toddler.  To look at her you would never know what she has been through.  Well, aside from when she lifts up her shirt and shows off her zombie fighting scar (at least that is what the huz says he is going to tell her when she gets older). 

Happy Birthday my little Monkey.  I love you so very much.  I am so very happy that you chose us to be your family.  You have changed our lives for the better.  We can't imagine life without you in it.

Thursday, March 11, 2010

Allergy Testing

Tuesday we took Ember to the allergist for allergy testing. In November she broke out in hives around her mouth after eating something. We had assumed that it was from the meringue off of a pie. So, we made the appointment for March and waited.

When we got to the allergist, we told her what happened and that we suspected an allergy to raw eggs. She said that we could test for household allergies (dogs, cats, dust, etc), seasonal allergens, eggs, and nuts. The testing wasn't at all what I expected. I thought that there were going to do needles with injections just under her skin. Instead they did these little 6 pronged trays and placed them on her back. I think the worst part for Ember, other than just being at a Dr's office, was having to be held down while they applied 4 of the trays to her back. Then we waited for 15 minutes.

After the 15 minutes, the nurse came back in and looked at Embers back, and then measured the places that seemed to be inflamed. The first spot was Histamine. It is basically their control spot to make sure that the test is working. It was a 5X7 red bump on her back. The only other spot that showed up was a 5X5 spot on her back. And it just so happened to be........if you guessed eggs, you are just as wrong as we were......Peanuts! I am SO glad that we decided to do this testing. Ember hasn't had any nuts yet since her transplant nurse mentioned to me that kids aren't supposed to have them until they are 2 now. I had told Matt that once the allergy testing was done, we might try introducing some peanut butter since she is only a few months away from turning 2. (Can you believe it?! My little monkey is going to be 2?!)

Matt was SO disappointed. He was so looking forward to sharing peanut butter and jelly sandwiches with her. I told him that maybe they still could depending on if she grows out of the allergy or not. When we take her to get her normal liver labs done, they are going to draw extra blood for the allergist. She told us that it would give them a number to base how severe her allergy is and then they could track it over time. We are going to have to go back to see then in about 3 months. They gave us some information on reading labels and what she could and couldn't have. They also gave us a prescription for some Epi-Pens. Kind of scary, but I know that we won't have to use them if we just keep an eye on her.

So, for now we wait to see what the results of her blood work is. I also really need to bet my rear in gear and order her a medic alert bracelet now. She technically should already have one, but now it's even more of a necessity.

Thursday, February 25, 2010

Liver Families 4th Birthday

The above montage is from a board that I joined right when Ember was diagnosed with Biliary Atresia.  Liver Families has helped me through SO much.  I am so blessed to have such great internet friends as the people on Liver Families.  I am sad that we share the common bong od liver disease, but I am glad that we have a place to share stories.  Please sign up to be an Organ Donor today.

Tuesday, February 23, 2010

Prayer Reqest..

Ember would like to ask any of you who read her blog or my blog to pray for a friend of ours.  His name is Jax and he is currently on the Liver transplant waiting list.  He is 9 months old and has Biliary Atresia, the same disease Ember was diagnosed with.  Jax is not a candidate for a living donor due to complications with his portal vein.  Please pray that someone says yes to giving him a chance at life. 

It is a bitter sweet prayer, to ask for one child to gain a life due to someone else losing theirs.  Please keep little Jax in your thoughts as well as the families who are saying yes to saving other lives. 

Sunday, February 21, 2010

Special little girl...

As the months have passed since Ember has become a big sister I have been wondering several things.  One of which has been whether I was going to love her sister as much as I love her. I do...surprised? Me neither. Another is how I am going to manage to show Ember that she is still a very special little girl.  I have to admit that I have been failing in the second point that I just mentioned.  Ember has become a happy, healthy little toddler and I sometimes forget how extraordinary she is, even if it is just for a moment in time.  I want to stress to her that she is important and that she is oh so special and I have been neglectful of that since her sister has been born.  Let me state right now that I do not believe in playing favorites with your children or grandchildren.  I went through that with one of my sets of grandparents through most of my life and I will not stand for it when it comes to my children.  So it is not a matter of showing favorites for me.  I guess I mean to say that I think that Ember is feeling a little neglected because she doesn't have exclusive mommy and daddy time anymore.  She hardly ever shows it though because she is so in love with her sister.  She always wants to hug, kiss, and love on her.  She is also very good at helping when I need a burp cloth or a blanket.  We are still working on getting her to leave a blanket on her sister when she is in the bouncy seat. 

While Ember is a special little girl becuase of her transplant and her opportunity to change lives through her story, that does not define her.  She is special because of her love, her sense of humor, and her creativity.  She shows unremarkable love towards everyone she meets.  She truly watches people and wants to hug or high five or wave to them.  She LOVES babies and children.  She is so small, yet she has an incredible amount of compassion.  She comforts her sister when she cries.  Admittedly, she has also comforted me when she has caught me crying.  Her sense of humor is like nothing I have ever seen before.  Well, I's her father's sense of humor.  She finds the smallest things funny and has this infectious laugh.  She thinks that the cat is funny even if he is just sleeping.  And, you know what?  He is sometimes. :)  And her creativity is amazing.  She loves to draw, but she also loves to figure things out.  She can figure out how to turn a toy into a stool to sit or stand on in 2.5 seconds flat.  She can also figure out how to fill and dump out any container you could ever imagine in less time than that. 

I can only hope that as she grows she can share her story, become an inspiration to others, and teach her sister how to love, laugh, and live as joyful a life as she seems to have right now.  I hope she can teach her sister that she is also a special little girl.  I hope that I, as her mommy, can teach her that both of my girls are extraordinary in their own way.  Ember is a special little girl, but not because she is defined by her transplant or her disease.  It is because, at the ripe old age of almost 21 months, she has defined her transplant and her disease as part of her life.  She has made herself and her life the story and we are all along for the ride.  I hope that along the way she can teach me how to enjoy the things that she does along with her sister.  Oh, and if she could decide that she would like to be potty trained sometime soon that would be great too, but I am not holding my breath!!! 

I love you my beautiful, special baby girls.  Live long and prosper. Yes, I like Star Trek. Don't judge.

Friday, January 8, 2010

Crazy toddler

Ember has been getting along pretty well since Autumn has arrived. The novelty of having a new baby has not worn off yet. I am waiting for it to happen, but so far so good. She constantly wants to love on and hug Autumn. She even tries to help us burp her whenever she can. Though, sometimes she does try a little too hard!

Aside from getting along with Autumn, she is getting into EVERYTHING! I do mean everything. She is absolutely her father's daughter. She is way to smart for her own good. She is trying to figure out both baby gates that we have. She watches us open and close them and then walks up to them later and tried to push on the buttons. Luckily she isn't strong enough for that yet. She has also been tyring to figure out how to plug the cord back into the swing. Every once in awhile she will get a hold of the cord once we have unplugged it from the swing and the wall (off of mommy or daddy's desk!) and walk up to the swing, with the correct end mind you, and try to plus it back in. It is neat to watch how she figures things out, but it is also not such a good thing.

Right now she has been getting into a lot of trouble for grabbing things off of mommy and daddy's desks. Especially drinks. I can't tell you how many times I have had to change her right before we leave the house because I turn my back for two second and she has dumped a drink down the front of her! I should have learned long before now that I can't turn my back at all!

She also knows exactly where her snacks are in the pantry. She will run right up to the door and knock on it if it is closed. If it is open, she just dives right in and grabs a few snacks then runs away! She is always laughing when she does it. I fail to find the humor in it sometimes. :) Other's I must admit that she is just too stinking cute.

One of her latest laughs is standing in front of the humidifier mist. She stands there and just laughs and laughs. Then she walks about for about 0.2 seconds and runs back to it and laughs some more. It really is cute. She just can't quite figure it out. She is also a big fan of music. Almost any music at all will get her dancing. Especially anything from The Laurie Berkner band. Any time something from them comes on, she drops whatever he is doing and just starts dancing away. It used to just be one big screaming and spinning in a circle fest, but now she is actually getting some moves down. She bends her knees and bounces and swings her arms! Too cute as well! I know that I am bad about leaving the TV on all day for her, but I do it because of all of the music. NickJr is very good about having tons of music videos in between their shows. Most of the shows she actually plays through so I feel that it is a good compromise.

As far as LuLu the Liver is concerned, she is happy. Ember's numbers have all come back great. We are going again next week for another round of labs and hope to hear that they are just as good. She is growing tall and gaining weight as expected which is very good. We are just so blessed to have her as healthy as she is.