Here I sit at 2:30 am full of frustration and confusion. Maybe it's because it's the middle of the night and I'm just not thinking clearly, but I felt like I needed to write some thoughts down so I can eventually look back and see how far I've come. That's what this blog is all about, right?
I sometimes sit back and I can't believe this is my life. Five years ago I sat on this same couch (probably in the middle of the night), pregnant, and I would never have dreamed that our path would have gone this way. I will just say it.....I never WANTED to be a mom of a child with special needs. Who would? I never WANTED to have a child with a complex medical history. Who would? Yet, here I sit 5 years later up to my neck in it....and what the hell am I supposed to do about it? Don't get me wrong I love her with all of my heart. I just hate the way that I still feel about being a mom with a child with special needs and a complex medical history. AND, I hate the fact that I will never know WHY! It hurts my heart like no one will ever understand to not know what the future holds for her. It makes me so very angry that we have to fight for every single thing for her, and it frustrates me that she will never be looked at as "normal".
My heart is so heavy tonight. I am so worried all the time that something will be wrong with this baby. I am in constant turmoil over it. What did I do wrong the first time I was pregnant? What if I have done it again? I pray that God knows that I am not strong enough to do this again. I NEED to experience normal. PLEASE let me experience normal. I hate the fact that we went to the neonatologist and got the perfect picture of the baby's foot (on ultrasound) and Tim and I both immediately jump into panic mode thinking that his foot looks exactly like Emma's. We then have the doctor going in search of the baby's thumbs....we need a picture of those thumbs to SEE that they are not the same as Emma's. It just makes my heart shatter! How can I NOT want this baby to be like Emma? As I layed there asking the doctor to look for different things on the ultrasound, I looked over at my sweet girl sitting on her Daddy's lap, and it just made me sad! How can I love someone SO much, yet be petrified at the thought of having another one like her?
As the time for the baby to be born gets closer, I can feel my anxiety getting worse. When I think about it, it feels like my chest is collapsing and I can no longer breath. I so badly want to see him, but I also don't want everyone checking him out head to toe to see if he has the same "dysmorphic features" (doctor's words:(....damn them) as his sister's. I want to just love and appreciate every aspect of both of my children, but tonight I just feel like a bad mom.
Saturday, March 29, 2008
Wednesday, March 19, 2008
Happy 4th Liver Birthday Miss Em
Dear Emma,
I never imagined 4 years ago today that life with you could be this amazing. You have definitely been the rainbow at the end of the rain. Your colors shine through to all who meet you. You have such an amazing capability to make everyone smile. Even the person who is angry at the world and can see nothing good....cannot help but smile at you.
I believe that you know that you have this special gift, and you carry it with you like a treasure. You know exactly when to bring it out (when your being sent to your room for being naughty, and you just have to give Mom a hug first). Your world is amazing, and it is such a blessing to see you continually learn about your surroundings.
4 years ago today we placed you in the arms of a nurse to take you off to an 8 hour surgery. What should have been the most terrifying moment of my life...was actually one of the most peaceful. I knew that you had to have that surgery for you to live. Time was not on our side, and I had watched you slowly deteriorate for 7 months. I knew that you were struggling, and I was so thankful that you were finally receiving your gift.
Your Angel Claire has watched over you constantly. I have thought about and prayed for her family every day for the past 4 years. In their time of great sorrow, they chose to help 17 others. I'm so glad that one of those was you.
You never take a day for granted Emma. You live every day to its fullest, and you are rarely sad or angry. I cannot imagine if our journey had taken a different path, and I could not look at your smiling face today. I feel like the luckiest mommy in the whole world.
Continue your magic Emma! You are such an inspiration to so many.
Love,
Mama
Tuesday, March 18, 2008
1 more day....1 Angel always remembered
Claire would have been 21 years old. She was planning to become a nurse when her life came to an end on that beautiful mountain. Not a day goes by that I don't think of the devastation that her family has/ and continues to feel. Not a night goes by that I don't go into Emma's room after she is sleeping and thank "Angel Claire" for protecting our sweet girl. Emma gets her strength from Claire. I truly believe that. It has been said that the recipient of an organ often takes on some of the characteristics of the donor. Although I never knew Claire, I have read many comments from her friends and families that have been written on a website dedicated to her life. I know that she was a beautiful girl with a big heart. She loved life, and I know that she has passed that trait on to our Emma. Thank you Angel Claire for donating your liver to our little 7 month old girl who was desperately fighting for every breath she took. 4 years later and your liver is still a perfect fit for our fiesty girl. Bless you Angel Claire!
2 Parents
Yes, Emma's 2 parents have grown so much over the last 4 years. It was not too long ago that we were talking about how fortunate we are to have Emma in our lives. When she was first born....and for a long time after that, I think we both questioned WHY! What did we do in our lives to have God punish our child. That may sound odd....and we never felt like we were being punished, but why did God decide to give Emma so many struggles?? Just recently, we have both come to the understanding that Emma is SUCH a gift! (we have always known this...I cannot describe our recent thoughts). Other children who are "typical" are everywhere that you look, but when people look at Emma they see the love that she radiates. She loves everyone that she meets, and she would never want to hurt anyone. Truly, wouldn't it be a blessing if everyone in the world could look at every experience as an adventure....and love everyone they came into contact with. What a wonderful world it would be. As parents we have grown, and as a couple we have grown. It's been a very long journey, but it is one that we feel very fortunate to still be traveling. Today is one more day on the amazing journey with our precious girl.
3 Places that Emma loves to go
1) Grandma and Grandpa's house
2) To see her boys (our nephew's)
3) To get french fries at McDonald's
Not too hard to please the perfect princess:)!
2) To see her boys (our nephew's)
3) To get french fries at McDonald's
Not too hard to please the perfect princess:)!
4 Fun things
These are the top 4 things Emma loves today:
1) Her dogs
2) Dora the Explorer
3) Fruit snacks
4) Her Daddy....and sometimes her mommy too!
1) Her dogs
2) Dora the Explorer
3) Fruit snacks
4) Her Daddy....and sometimes her mommy too!
5 Fabulous things about our Future
Or, at least 5 fabulous things about the next year.
We look forward to:
1) Emma meeting her new baby brother!! What a day that will be:).
2) Emma starting kindergarten! I can't wait to see her at the BIG school:)....all 29 kids that we have there (grades K-5)
3) Emma's 4 year check up - It will be scheduled in July, and I'm sure it will be great!
4) Summer - All Emma can think about is planting flowers outside. I'm so excited to have her help me this year.
5) Seeing Cousin Kale again:). Emma loves her baby cousin, and she can't wait to see him again!
We look forward to:
1) Emma meeting her new baby brother!! What a day that will be:).
2) Emma starting kindergarten! I can't wait to see her at the BIG school:)....all 29 kids that we have there (grades K-5)
3) Emma's 4 year check up - It will be scheduled in July, and I'm sure it will be great!
4) Summer - All Emma can think about is planting flowers outside. I'm so excited to have her help me this year.
5) Seeing Cousin Kale again:). Emma loves her baby cousin, and she can't wait to see him again!
6 Significant people we've met along our journey
OK, I'm behind again! Somehow I am lacking my mojo??? You'd think just sitting on the couch all day would motivate me to write, but I seem to find other things to do.
Today, I am going to write about 6 of the people that we've met along this journey. These are 6 people that we would not have met otherwise, and they have made such a huge difference in who I am today. Some of them I only know through the Cyber world, but they are important to me nonetheless.
1) Becky, Joe, and Louis - We met the adorable Louis on an organ donor awareness walk. Although Becky calls me a stalker for tracking her down....I'm pretty sure that she's glad that I was so determined to meet them that day. Louis had received a heart transplant 3 months before Emma received her liver. Louis was also about 3 months older then Emma. Emma loved him from the start. Although we only knew Louis for a year before he left his Earthly body, he will ALWAYS hold a special place in our hearts. His parents Joe and Becky have become some of our best friend. Becky is the one person who I know will always listen to my woes and laugh about my funny mishaps. I truly feel like she is my sister that was misplaced at birth (hmmmm...not sure we could've had the same mom...but pretty sure they are at least sisters). My life has changed dramatically by having Becky in it.
2) Jill and Marek - Jill is my cyber friend who lives in Alaska. Our kids were transplanted within days of each other, and their birthdays are very close also. Marek and Emma have had many similar post transplant issues (especially allergies). I look forward to the day that I will one day meet Jill in person. When I talk to her on the phone it is as if I have known her all of my life. She has 3 boys, and she is expecting baby #4 in September:).
3) CRC staff - I can't limit this to just one person. CRC is the place that Emma goes to pre-school. All of her teachers and therapists (well MOST of them) have been phenomenol! They are so great with our sweet girl, and she has made amazing progress because of their loving care.
4) Annette - she is our transplant coordinator, and I don't know how we would have been able to travel this journey without her. She is the one who called to tell us that our life was about to forever change, and that our girl was going to have a 2nd chance. She answers all of our questions and never makes us feel incompetant. She is just amazing at what she does, and I am so thankful that she has been the coordinator that has been placed with us.
5) Debbie - I received a phone call last week from a fellow mom of a child that has Biliary Atresia and Rubenstein Taybi syndrome. It was an amazing conversation, and just a euphoric experience to know there is someone out there going through very similar challenges to what we have gone through for the past 4 years. Granted, this person has just come into my life, but I hope to talk to her many many more times.
6) Angie - Yes, I have met myself. When I look in the mirror today, I see that I am a drastically different person than I was the day before Emma was born. For the most part I have changed for the better. I am more understanding and compassionate toward others. I am definitely more educated. However, I am also more leary about what the future holds (before I never really thought about the future).....maybe that makes me a better person because I value every day that I have. However, sometimes I wish that I could get just a piece of that naitivity back.
******Above all else....I have met Miss Emma!!! Without her where would my world be? I love her with every piece of my being! I love absolutely everything about her. I would not change one part of our journey if it meant that I didn't have my baby girl to hold in my arms and kiss every night. She is my strength, my hero, my world!
Today, I am going to write about 6 of the people that we've met along this journey. These are 6 people that we would not have met otherwise, and they have made such a huge difference in who I am today. Some of them I only know through the Cyber world, but they are important to me nonetheless.
1) Becky, Joe, and Louis - We met the adorable Louis on an organ donor awareness walk. Although Becky calls me a stalker for tracking her down....I'm pretty sure that she's glad that I was so determined to meet them that day. Louis had received a heart transplant 3 months before Emma received her liver. Louis was also about 3 months older then Emma. Emma loved him from the start. Although we only knew Louis for a year before he left his Earthly body, he will ALWAYS hold a special place in our hearts. His parents Joe and Becky have become some of our best friend. Becky is the one person who I know will always listen to my woes and laugh about my funny mishaps. I truly feel like she is my sister that was misplaced at birth (hmmmm...not sure we could've had the same mom...but pretty sure they are at least sisters). My life has changed dramatically by having Becky in it.
2) Jill and Marek - Jill is my cyber friend who lives in Alaska. Our kids were transplanted within days of each other, and their birthdays are very close also. Marek and Emma have had many similar post transplant issues (especially allergies). I look forward to the day that I will one day meet Jill in person. When I talk to her on the phone it is as if I have known her all of my life. She has 3 boys, and she is expecting baby #4 in September:).
3) CRC staff - I can't limit this to just one person. CRC is the place that Emma goes to pre-school. All of her teachers and therapists (well MOST of them) have been phenomenol! They are so great with our sweet girl, and she has made amazing progress because of their loving care.
4) Annette - she is our transplant coordinator, and I don't know how we would have been able to travel this journey without her. She is the one who called to tell us that our life was about to forever change, and that our girl was going to have a 2nd chance. She answers all of our questions and never makes us feel incompetant. She is just amazing at what she does, and I am so thankful that she has been the coordinator that has been placed with us.
5) Debbie - I received a phone call last week from a fellow mom of a child that has Biliary Atresia and Rubenstein Taybi syndrome. It was an amazing conversation, and just a euphoric experience to know there is someone out there going through very similar challenges to what we have gone through for the past 4 years. Granted, this person has just come into my life, but I hope to talk to her many many more times.
6) Angie - Yes, I have met myself. When I look in the mirror today, I see that I am a drastically different person than I was the day before Emma was born. For the most part I have changed for the better. I am more understanding and compassionate toward others. I am definitely more educated. However, I am also more leary about what the future holds (before I never really thought about the future).....maybe that makes me a better person because I value every day that I have. However, sometimes I wish that I could get just a piece of that naitivity back.
******Above all else....I have met Miss Emma!!! Without her where would my world be? I love her with every piece of my being! I love absolutely everything about her. I would not change one part of our journey if it meant that I didn't have my baby girl to hold in my arms and kiss every night. She is my strength, my hero, my world!
Thursday, March 13, 2008
7 Signs of Liver Disease
Only 7 more days (from yesterday...oops), and I thought I would post the 7 top signs of liver disease. Although we are post transplant, we still watch for these signs as they can be signs of rejection:
1) Light colored poo....I know that poo is just what everyone want to hear about, but that is the truth. Emma's was almost white pre-transplant.
2) Jaundice skin...this is the number one thing that people usually think of when they think of liver disease.
3) Hard, distended abdomen....as the liver becomes more ill, it tries to regenerate itself. It will literally add onto itself. If liver disease is progressing it will kill off that part also, but the liver will still try to regenerate. That makes for a very hard and big tummy. Once the liver gets to an advanced stage of cirrosis then it will start to shrink...never to regenerate again.
4) Lethargy...when any organ is not functioning correctly it makes your energy level become lower and lower.
5) Vomitting...as the liver gets larger it pushes on the other organs. It also makes processing food become more difficult which can lead to increased vomitting.
6) Elevated LFT's....The liver function tests in your bloodstream become elevated.
7) Itchiness and bruising - both signs of progressed liver disease.
Obviously, only one of these may or may not mean much, but when your child has ALL of these...it is a frightening road. Being post transplant causes increased anxiety anytime I see any of these signs. However, if I do see any, it helps me to know that I can get her blood drawn and know if it is liver related or not.
1) Light colored poo....I know that poo is just what everyone want to hear about, but that is the truth. Emma's was almost white pre-transplant.
2) Jaundice skin...this is the number one thing that people usually think of when they think of liver disease.
3) Hard, distended abdomen....as the liver becomes more ill, it tries to regenerate itself. It will literally add onto itself. If liver disease is progressing it will kill off that part also, but the liver will still try to regenerate. That makes for a very hard and big tummy. Once the liver gets to an advanced stage of cirrosis then it will start to shrink...never to regenerate again.
4) Lethargy...when any organ is not functioning correctly it makes your energy level become lower and lower.
5) Vomitting...as the liver gets larger it pushes on the other organs. It also makes processing food become more difficult which can lead to increased vomitting.
6) Elevated LFT's....The liver function tests in your bloodstream become elevated.
7) Itchiness and bruising - both signs of progressed liver disease.
Obviously, only one of these may or may not mean much, but when your child has ALL of these...it is a frightening road. Being post transplant causes increased anxiety anytime I see any of these signs. However, if I do see any, it helps me to know that I can get her blood drawn and know if it is liver related or not.
8 Easy (Easier??) things about this life
OK, I got a little behind in my posts....so, now I am going to play catch up! Now, back to our regularly scheduled postings.....
Our life post transplant has become so much easier. There are just so many things that I somewhat take for granted now....although I TRY not to. It's just the longer post transplant we become...the easier it is to put those memories of how difficult life was behind us. So, here are the top 8 things that I think have become so much easier compared to life before transplant:
1) Potty trained!!!- Before transplant Emma seriously had 10 -15 blowout diapers a day (I know TMI...sorry). Life is so much easier in that department:).
2) Medication- For one thing Emma LOVES her medicine, and she now reminds US about her medicine. She is also "only" on 6 medications vs. the 15 that she was on post transplant. Granted, I would LOVE for her to be on less...but...we'll take it!!
3) Oxygen - Post transplant, I had to carry Emma's oxygen around for the 7 months post transplant. I remember the day that she finally came off of it....a weight had been lifted from my shoulders in more than one way. We've had a few pneumonia scares where she has briefly been put back on it, but overall...she holds her own in the oxygen department.
4) Sleeping - This may sound bizarre, but pre-transplant Emma slept TOO much! I cherish the fact that she doesn't sleep much anymore. OK, getting up 4 times last night may have been a bit much, but I love the fact that she has so much more energy now.
5) Eating - Pre-transplant we literally had to force Emma to take her bottles. We calculated every single ounce and calorie that went into her mouth, and then we watch it all come right back out. She vomitted constantly. That along with the blow outs was SO difficult. We just watched her not gaining weight and getting smaller and smaller. Emma weighed 6# 10oz. at birth....she weighed 11 pounds on the day of her transplant, and her liver weighed 2 lbs!!! YIKES!! I look back now, and Emma has come so far in this department (mostly in the last year). She will try anything, and she loves to eat:). Mealtime is so much nicer in our house now. I don't have that fear about WHEN is she going to throw up???
6) Allergies - Emma's allergies post transplant became really bad. She is severely allergic to many foods, and moderately allergic to many others. Those allergies have not become any better, BUT in the last year we have found the right "cocktail" of medications to keep them at bay.
7) Personality - Emma is little Miss Personality....she always has been, but her personality is just shining through more and more every day.
8) Blood draws - Post transplant they tested Em's blood 2 times per day (this was immediately post tx...and she had a central line), then it went to once a day, then every other day, then once a week, then once every other week, then once a month, then every other month, and NOW she only has her blood drawn once every 3 months!! That is AWESOME!!!
However, blood draws are never "easy". I took her yesterday, and they had to poke her 4 times!!! Guess what! They still didn't get enough blood:(. It makes me so sad to see her poor little arms all bruised as the tears stream down her face...and mine! It's been a long time since I have cried at a blood draw. However, yesterday all Emma wanted to do was go to her BFF Brindi's house. We were on our way there, but I told her that we had one stop to make first....when we pulled up in front of the hospital, and I went to get her out of her car seat she said, "NO, Brindi's house". The whole time that they were trying to draw her blood she just kept saying "NO, Brindi's house" over and over again!! Afterward she received 10 stickers, 4 suckers, AND she got to go to Brindi's house! Anything you want baby girl!! You are my tough little princess!
Our life post transplant has become so much easier. There are just so many things that I somewhat take for granted now....although I TRY not to. It's just the longer post transplant we become...the easier it is to put those memories of how difficult life was behind us. So, here are the top 8 things that I think have become so much easier compared to life before transplant:
1) Potty trained!!!- Before transplant Emma seriously had 10 -15 blowout diapers a day (I know TMI...sorry). Life is so much easier in that department:).
2) Medication- For one thing Emma LOVES her medicine, and she now reminds US about her medicine. She is also "only" on 6 medications vs. the 15 that she was on post transplant. Granted, I would LOVE for her to be on less...but...we'll take it!!
3) Oxygen - Post transplant, I had to carry Emma's oxygen around for the 7 months post transplant. I remember the day that she finally came off of it....a weight had been lifted from my shoulders in more than one way. We've had a few pneumonia scares where she has briefly been put back on it, but overall...she holds her own in the oxygen department.
4) Sleeping - This may sound bizarre, but pre-transplant Emma slept TOO much! I cherish the fact that she doesn't sleep much anymore. OK, getting up 4 times last night may have been a bit much, but I love the fact that she has so much more energy now.
5) Eating - Pre-transplant we literally had to force Emma to take her bottles. We calculated every single ounce and calorie that went into her mouth, and then we watch it all come right back out. She vomitted constantly. That along with the blow outs was SO difficult. We just watched her not gaining weight and getting smaller and smaller. Emma weighed 6# 10oz. at birth....she weighed 11 pounds on the day of her transplant, and her liver weighed 2 lbs!!! YIKES!! I look back now, and Emma has come so far in this department (mostly in the last year). She will try anything, and she loves to eat:). Mealtime is so much nicer in our house now. I don't have that fear about WHEN is she going to throw up???
6) Allergies - Emma's allergies post transplant became really bad. She is severely allergic to many foods, and moderately allergic to many others. Those allergies have not become any better, BUT in the last year we have found the right "cocktail" of medications to keep them at bay.
7) Personality - Emma is little Miss Personality....she always has been, but her personality is just shining through more and more every day.
8) Blood draws - Post transplant they tested Em's blood 2 times per day (this was immediately post tx...and she had a central line), then it went to once a day, then every other day, then once a week, then once every other week, then once a month, then every other month, and NOW she only has her blood drawn once every 3 months!! That is AWESOME!!!
However, blood draws are never "easy". I took her yesterday, and they had to poke her 4 times!!! Guess what! They still didn't get enough blood:(. It makes me so sad to see her poor little arms all bruised as the tears stream down her face...and mine! It's been a long time since I have cried at a blood draw. However, yesterday all Emma wanted to do was go to her BFF Brindi's house. We were on our way there, but I told her that we had one stop to make first....when we pulled up in front of the hospital, and I went to get her out of her car seat she said, "NO, Brindi's house". The whole time that they were trying to draw her blood she just kept saying "NO, Brindi's house" over and over again!! Afterward she received 10 stickers, 4 suckers, AND she got to go to Brindi's house! Anything you want baby girl!! You are my tough little princess!
Monday, March 10, 2008
9 more days...9 new worries
Life post transplant has truly been an amazing experience. I often look back at life pre-transplant and the time right after, and it seems as if it could've been someone else's life...and I was a mere observer. Then, reality brings me back to the present. Although life is SO much better than life before "the call", I would not say that our life is "normal" (although...truly "normal" is JUST a setting on the dryer). It is "normal" for us, and I would not trade it for the world. We were told before transplant that getting a transplant was like trading one disease for another. Although we got rid of the liver disease, we now have a child that is immunosuppressed and always will be. So, today I thought I would post the "top" 9 things that we have worried about since transplant. Granted, they are much less terrifying than life pre-transplant, but none the less they are worries for us as parents:
1) Immunsuppression - Emma takes a medication two times every day that suppresses her immune system so it does not recognize the "foreign body" that is her liver and attack it. Because of this we have to be more cautious that she is not around those who are sick.
2) Allergies - Since Emma was transplanted at such a young age and then put on the medication called Prograf (immunosuppresant) it has thrown off her allergy system. She has literally tested positive for allergies to every food that we have ever tested. Our allergist (who we love) has eliminated the major allergens (eggs, nuts, and shellfish) from her diet, however she has spells where she will get hives for days for unknown reasons or have vomitting spells. It boggles my mind sometimes! We are anxious to have her allergies tested again this summer because I think some have become more extreme.
3) Aspiration - Now, whether this is transplant related or not, it is something that we definitely worry about! Emma had always done fine with drinking....until one year post transplant. Her first year post transplant she did fantastic. Then, one year out she began having sinus infection after sinus infection...which turned into lung infections that led to hospitalizations. She would literally be on antibiotics for 10 days...be off for 2 and end up in the hospital again. This went on for a year. Finally, we went to Denver for her annual check up. I mentioned it to her doctors, and they were ready to just tell me it was OK. I was adament that something was not right. So, they did a swallow study, and sure enough Emma was aspirating on thin liquids. Since then we have had to thicken all of her drinks. It is a pain, but not all that difficult. We hope that one day she will be able to come off of the thickener.
4) Weakened bones - Emma has been on steroids for so long that it is questionable how strong her bones are. We have "only" had one broken bone so far (knocking HARD on wood right now).
5) Poop color - sorry TMI, however any "liver parent" knows that the poop tells you A LOT about how the liver is functioning. So, anytime that Emma has lighter colored poop....It FREAKS.ME.OUT!!! However, too much milk or too many bananas can also cause lighter poop (there's some food for thought:).
6) Blood draws - Even though we are down to getting blood drawn every 3 months....and they alway look excellent, I still get that high anxiety feeling until I get the results back from the blood draws. There is ALWAYS the chance of rejection. The further out we get the more confident I feel....but I don't think it will ever be a laid back event to get her blood drawn.
7) Teeth - Being extremely jaundice when the teeth are forming leads to....you guessed it....yellow teeth!!! Also, being on so many different medications and vomitting so much have not helped. Therefore we see a pediatric dentist. We will be seeing a new one this summer in Denver. I am frightened of that day.
8) Mom's sanity - LOL....I always wonder about that one:)
9) The thought that we are never promised another day with her. I know that sounds odd, and I know even with a totally healthy "typical" kid you never know what will happen tomorrow. However, when your child has been through so much, that fear just looms in the dark shadows all of the time. I wish that it would go away. Or do I? Would I value every single second as much as I do now?
For now I just take it one day at a time, and I cherish every single moment. Life post transplant is not simple....it is not easy....BUT, it truly is WONDERFUL AND AMAZING! I would not trade one single day of the life that we have had with Emma, and we look forward to many many more anniversaries to celebrate in the future!
1) Immunsuppression - Emma takes a medication two times every day that suppresses her immune system so it does not recognize the "foreign body" that is her liver and attack it. Because of this we have to be more cautious that she is not around those who are sick.
2) Allergies - Since Emma was transplanted at such a young age and then put on the medication called Prograf (immunosuppresant) it has thrown off her allergy system. She has literally tested positive for allergies to every food that we have ever tested. Our allergist (who we love) has eliminated the major allergens (eggs, nuts, and shellfish) from her diet, however she has spells where she will get hives for days for unknown reasons or have vomitting spells. It boggles my mind sometimes! We are anxious to have her allergies tested again this summer because I think some have become more extreme.
3) Aspiration - Now, whether this is transplant related or not, it is something that we definitely worry about! Emma had always done fine with drinking....until one year post transplant. Her first year post transplant she did fantastic. Then, one year out she began having sinus infection after sinus infection...which turned into lung infections that led to hospitalizations. She would literally be on antibiotics for 10 days...be off for 2 and end up in the hospital again. This went on for a year. Finally, we went to Denver for her annual check up. I mentioned it to her doctors, and they were ready to just tell me it was OK. I was adament that something was not right. So, they did a swallow study, and sure enough Emma was aspirating on thin liquids. Since then we have had to thicken all of her drinks. It is a pain, but not all that difficult. We hope that one day she will be able to come off of the thickener.
4) Weakened bones - Emma has been on steroids for so long that it is questionable how strong her bones are. We have "only" had one broken bone so far (knocking HARD on wood right now).
5) Poop color - sorry TMI, however any "liver parent" knows that the poop tells you A LOT about how the liver is functioning. So, anytime that Emma has lighter colored poop....It FREAKS.ME.OUT!!! However, too much milk or too many bananas can also cause lighter poop (there's some food for thought:).
6) Blood draws - Even though we are down to getting blood drawn every 3 months....and they alway look excellent, I still get that high anxiety feeling until I get the results back from the blood draws. There is ALWAYS the chance of rejection. The further out we get the more confident I feel....but I don't think it will ever be a laid back event to get her blood drawn.
7) Teeth - Being extremely jaundice when the teeth are forming leads to....you guessed it....yellow teeth!!! Also, being on so many different medications and vomitting so much have not helped. Therefore we see a pediatric dentist. We will be seeing a new one this summer in Denver. I am frightened of that day.
8) Mom's sanity - LOL....I always wonder about that one:)
9) The thought that we are never promised another day with her. I know that sounds odd, and I know even with a totally healthy "typical" kid you never know what will happen tomorrow. However, when your child has been through so much, that fear just looms in the dark shadows all of the time. I wish that it would go away. Or do I? Would I value every single second as much as I do now?
For now I just take it one day at a time, and I cherish every single moment. Life post transplant is not simple....it is not easy....BUT, it truly is WONDERFUL AND AMAZING! I would not trade one single day of the life that we have had with Emma, and we look forward to many many more anniversaries to celebrate in the future!
Sunday, March 09, 2008
10 days until Emma's BIG day
We have 10 days to go until we will celebrate Emma's 4th transplant anniversary. This time of year is always a time of mixed emotions for me. The memories that come flooding back are so clear, yet the further we get away from transplant I notice that many of the bad memories are beginning to fade allowing only the good ones to surface. I think this is the first year where I have not felt the anxiety at this time of the year that I have felt in other years. This year I just feel joy at the fact that our little princess is here with us today. Not a single night goes by that I do not go into Emma's room after she is asleep and thank Angel Claire (Emma's donor) for giving Emma the gift of life. My heart goes out to her family at this very difficult time. In a time where we are celebrating our child's life here on Earth, they are watching another year pass by without their precious daughter. Claire would have been 21 years old this year. She was an amazing girl, and I know that she is greatly missed by her family, friends, and community.
It's 10 days until Emma's 4th transplant anniversary. Today, I thought that I would share the top 10 things that Emma says that melt my heart. The fact that Emma is talking, just that simple fact, is truly enought to melt my heart. We were told when Emma was 6 1/2 weeks old that she "Would never walk or talk"....boy, was that doctor wrong. Here are my top 10:
1) When we say, "I love you Emma"....she replies with, "Too... Mom and Dad and Dogs and horses......(and whatever else it is that she loves that day:).
2) The way she says "Thank you" anytime that something is given to her. She has such great manners.
3) When we are giving her medicine, and she thinks we are giving them to her too quickly she puts up her little hand (as if to say stop) and she says, "Wait a sec".
4) She puts her big baby doll in the baby's crib and says, "Quiet, baby is sleeping, shhhhhh!".....this one will be a good one for the months ahead.
5) "Emma go to school now???"...she always loves to go to school.
6) "Idol...girls sing"...she is still American Idol's greatest fan. Maybe one day we'll see our little rock star on there. When the girl's sing, Emma always picks up the closest "thing" to be her microphone and she sings along with them.
7) "NO, down dogs....P.U"....I guess this is an example of what her mom thinks of the dogs...oops!
8) "I read like Mama"....anytime that I'm reading on the couch, at the table, in the bed, ect. Emma will get a book or a magazine and read next to me.
9) When I asked her to "Stop it" the other day, she looked at me and said, "NO, you stop it!". Yes, a little sassy, but I love it!
10) My favorite...we've been talking about friends a lot lately. So Emma said, "Mama's my best friend". Yes, she knows how to melt my heart.
Love you little one! Can't wait to celebrate in 10 more days! You deserve ONLY the best!
It's 10 days until Emma's 4th transplant anniversary. Today, I thought that I would share the top 10 things that Emma says that melt my heart. The fact that Emma is talking, just that simple fact, is truly enought to melt my heart. We were told when Emma was 6 1/2 weeks old that she "Would never walk or talk"....boy, was that doctor wrong. Here are my top 10:
1) When we say, "I love you Emma"....she replies with, "Too... Mom and Dad and Dogs and horses......(and whatever else it is that she loves that day:).
2) The way she says "Thank you" anytime that something is given to her. She has such great manners.
3) When we are giving her medicine, and she thinks we are giving them to her too quickly she puts up her little hand (as if to say stop) and she says, "Wait a sec".
4) She puts her big baby doll in the baby's crib and says, "Quiet, baby is sleeping, shhhhhh!".....this one will be a good one for the months ahead.
5) "Emma go to school now???"...she always loves to go to school.
6) "Idol...girls sing"...she is still American Idol's greatest fan. Maybe one day we'll see our little rock star on there. When the girl's sing, Emma always picks up the closest "thing" to be her microphone and she sings along with them.
7) "NO, down dogs....P.U"....I guess this is an example of what her mom thinks of the dogs...oops!
8) "I read like Mama"....anytime that I'm reading on the couch, at the table, in the bed, ect. Emma will get a book or a magazine and read next to me.
9) When I asked her to "Stop it" the other day, she looked at me and said, "NO, you stop it!". Yes, a little sassy, but I love it!
10) My favorite...we've been talking about friends a lot lately. So Emma said, "Mama's my best friend". Yes, she knows how to melt my heart.
Love you little one! Can't wait to celebrate in 10 more days! You deserve ONLY the best!
Friday, March 07, 2008
Signs Signs Everywhere Signs
As I become older...and wiser (LOL) I have come to realize that our entire journey is pre-planned. It's all layed out in front of us, however it is not available for us to view...nor would we want to. However, lately I have had the time to ponder the idea that if we truly look at our suroundings and pay attention to the people, landscape, and events that are happening around us, then we might just catch a glimpse...just a brief view of what is to come.
I have many examples of how this has happened in my life. One that sticks out vividly was the week before Emma was born. It was the first week of August. The temperature had been over 100 degrees for weeks. It was miserable hot, and I was getting bigger by the day (I gained 30 pounds in the last 3 weeks....YIKES...toxemia). I had gone into Wal-Mart, my "usual" hangout...because it was so much cooler in there. However, on this particular day I just could not get comfortable...and I was EXTREMELY agitated. As I was walking into the store, our local NOWCAP (mentally disabled facility) van pulled up and as the people started getting out one of them ran up to me and asked, "Why do you have such a big tummy". Now, normally I would have much more patience, but on that day I was snippy with this man and said, "I am pregnant"...and continued on my mission. I did not have the time or the energy to deal with "those people". Upon checking out of Wal-Mart I got a cashier who we know. She has a son that has a disability, and I was not overly nice to her that day either. It was my world...all about me....and I was having a bad day, so why should I make anyone else's day good, right? Granted, this is VERY out of character for me...but I was miserable.
Looking back on that day, it was a huge sign for me. A sign of the struggles that I would have soon in my life. If only I could relive that day. If only I could show the peole that I encounter how I know that their feelings matter. If only everyone could step back and see "the entire picture" because no matter what your journey may be....we all have difficult times. After I began thinking about that day, I came to the realization that I had encountered many many people/families that had children with medical issues and disabilities throughout my entire pregnancy. Many more than I typically encounter. I believe this was my sign, and the way the families dealt with the circumstances was my life lesson and my "glimpse" of things to come...unbeknownst to me.
In my current situation (pregnant with my 2nd child), I try to be more aware of my surroundings. My "signs" have definitely been there throughout this pregnancy. People that I have known for quite some time and consider good friends have come out of the woodwork to tell me about a time in their life that I did not know about. One of my friends shared with me the first child that she had 40 years ago. The child was born with many complications and only lived for 5 hours. Now, you may ask HOW this helped me. However, my friend went on to tell me about her next 2 children. While she had been very scared throughout both of her preganancies, she went on to have 2 very healthy children. Amazing that I have known this woman for 10 years. I consider her I good friend. I've worked with her. However, she knew the perfect time to share this story with me. This was my sign.
There is another family in town. I do not know them well, but they have also been a beacon of hope for me. They have 2 grown boys. Their oldest has severe autism, and their 2nd child was the validictorian of his graduating class. Their love for both of their boys is visibly seen. They treat them both with the utmost respect, and they've raised them to be strong citizens in our community. Their younger boy is everywhere that I go lately. I see him in the store, at our school speaking to the older kids, I pass him on the street often. This is my sign that things are going to be OK.
Yesterday, was the most amazing sign! A mom was placed in my path to share her story with me. I cannot even begin to explain the feeling that I felt when hearing her story. It was like a neon flashing sign saying ALL IS WELL....BE HAPPY. I have felt so much lighter since that encounter, and I will be forever grateful to that mom.
Our universe is a mystery that none of us are meant to "figure out". We go into our future blind folded in so many ways. However, if we just become more keenly aware of our surrounding, I believe there are times that we can catch a glimpse, a simple sign, of what lies ahead. Becoming more acutely aware of those signs may just help us to endure those difficult times, and help us to celebrate the joyful times.
I have many examples of how this has happened in my life. One that sticks out vividly was the week before Emma was born. It was the first week of August. The temperature had been over 100 degrees for weeks. It was miserable hot, and I was getting bigger by the day (I gained 30 pounds in the last 3 weeks....YIKES...toxemia). I had gone into Wal-Mart, my "usual" hangout...because it was so much cooler in there. However, on this particular day I just could not get comfortable...and I was EXTREMELY agitated. As I was walking into the store, our local NOWCAP (mentally disabled facility) van pulled up and as the people started getting out one of them ran up to me and asked, "Why do you have such a big tummy". Now, normally I would have much more patience, but on that day I was snippy with this man and said, "I am pregnant"...and continued on my mission. I did not have the time or the energy to deal with "those people". Upon checking out of Wal-Mart I got a cashier who we know. She has a son that has a disability, and I was not overly nice to her that day either. It was my world...all about me....and I was having a bad day, so why should I make anyone else's day good, right? Granted, this is VERY out of character for me...but I was miserable.
Looking back on that day, it was a huge sign for me. A sign of the struggles that I would have soon in my life. If only I could relive that day. If only I could show the peole that I encounter how I know that their feelings matter. If only everyone could step back and see "the entire picture" because no matter what your journey may be....we all have difficult times. After I began thinking about that day, I came to the realization that I had encountered many many people/families that had children with medical issues and disabilities throughout my entire pregnancy. Many more than I typically encounter. I believe this was my sign, and the way the families dealt with the circumstances was my life lesson and my "glimpse" of things to come...unbeknownst to me.
In my current situation (pregnant with my 2nd child), I try to be more aware of my surroundings. My "signs" have definitely been there throughout this pregnancy. People that I have known for quite some time and consider good friends have come out of the woodwork to tell me about a time in their life that I did not know about. One of my friends shared with me the first child that she had 40 years ago. The child was born with many complications and only lived for 5 hours. Now, you may ask HOW this helped me. However, my friend went on to tell me about her next 2 children. While she had been very scared throughout both of her preganancies, she went on to have 2 very healthy children. Amazing that I have known this woman for 10 years. I consider her I good friend. I've worked with her. However, she knew the perfect time to share this story with me. This was my sign.
There is another family in town. I do not know them well, but they have also been a beacon of hope for me. They have 2 grown boys. Their oldest has severe autism, and their 2nd child was the validictorian of his graduating class. Their love for both of their boys is visibly seen. They treat them both with the utmost respect, and they've raised them to be strong citizens in our community. Their younger boy is everywhere that I go lately. I see him in the store, at our school speaking to the older kids, I pass him on the street often. This is my sign that things are going to be OK.
Yesterday, was the most amazing sign! A mom was placed in my path to share her story with me. I cannot even begin to explain the feeling that I felt when hearing her story. It was like a neon flashing sign saying ALL IS WELL....BE HAPPY. I have felt so much lighter since that encounter, and I will be forever grateful to that mom.
Our universe is a mystery that none of us are meant to "figure out". We go into our future blind folded in so many ways. However, if we just become more keenly aware of our surrounding, I believe there are times that we can catch a glimpse, a simple sign, of what lies ahead. Becoming more acutely aware of those signs may just help us to endure those difficult times, and help us to celebrate the joyful times.
Monday, March 03, 2008
Laugh or Cry....Right or Wrong?
In an attempt to find the straw that broke the camel's back, I'm truly TRYING to find humor in every situation. In the end it makes us stronger right? It's all character building....BLAH BLAH BLAH. Then, in the next thought I have a little pitty party. A little whoa is me....why is this happening...why did THAT happen? Only to be followed up with a brief river of tears (I keep telling my husband that they make pregnant women drink more water because they cry ALL OF THE TIME), only to be summed up with a fit of laughter. Some call it hormones. Some call it craziness or maybe borderline bi-polar disorder. I just like to call it life, and right now I have WAY too much time to think about every aspect of it.
An example is the thought of sending Emma to Kindergarten next year. Are we doing the right thing? Who would know what the right thing is? Then there's the thought that the school district thinks they get to decide where MY child will attend school. Yes, all other children in our district (OH, that's right...only the one's that DON'T have special needs) get to choose the school they would like to attend. However, since my child was born exceptional in so many ways...which has also caused her to endure so much more than so many other children her age....but, YES please do tell ME where the "best" place for her to go to school would be. See, I teach Kindergarten at a rural school. I generally have 10 children or less in my class, and we have a full time special ed teacher in our school. Yes, Emma WILL attend the school where I teach. THAT is the best place for her. NO ONE else needs to decide this. However, as I anxiously wait for the school district to complete their observations and evaluations on my child my anxiety over the situation continues to rise. I continually work "my case" out in my head....getting ready for the "great debate" that will hopefully never have to take place. However, I have found that it is our job as parents to fight for every single thing that our child deserves. WHY??? Why do we constantly find ourselves jumping through hoops (that sometimes feel like they are on fire no less) for things that are obviously best for Miss Emma?
Then, we have Emma the Exorcist. Yes, it makes my child sound demonic. However, lately whenever it is time for bed our child turns into someone that I have never seen before. I swear that her head is going to start spinning around soon. I believe that I have already caught a glimpse of the red eyes glowing in the dark as she throws toys at me and yells NO at the top or her lungs. It's not a pretty phase, and I do hope that it passes quickly because it is STRESSING ME OUT!
Then, we have the insurance case worker who has to call once a month to check on "Emma's status". She somehow caught wind that I am on bedrest, so today she called to 20 question me.....about ME! I had to chuckle just a tad when asked, "Is there anything that is causing you stress right now". HA!!! Funny lady:).
Ahhh, this is so theraputic. I can just feel the stress melting away:). Next, we have my husband who continually is gone on business trips. Granted, he is generally just gone a couple of days a week, but dealing with everything right now is just a tich too much. Next week is the last time that he will travel out of town until after Baby Boy is born. Can I hear a HOOORAAHHHH!!
Some days it just feels like I have one nerve left.....and it's wearing pretty thin.
An example is the thought of sending Emma to Kindergarten next year. Are we doing the right thing? Who would know what the right thing is? Then there's the thought that the school district thinks they get to decide where MY child will attend school. Yes, all other children in our district (OH, that's right...only the one's that DON'T have special needs) get to choose the school they would like to attend. However, since my child was born exceptional in so many ways...which has also caused her to endure so much more than so many other children her age....but, YES please do tell ME where the "best" place for her to go to school would be. See, I teach Kindergarten at a rural school. I generally have 10 children or less in my class, and we have a full time special ed teacher in our school. Yes, Emma WILL attend the school where I teach. THAT is the best place for her. NO ONE else needs to decide this. However, as I anxiously wait for the school district to complete their observations and evaluations on my child my anxiety over the situation continues to rise. I continually work "my case" out in my head....getting ready for the "great debate" that will hopefully never have to take place. However, I have found that it is our job as parents to fight for every single thing that our child deserves. WHY??? Why do we constantly find ourselves jumping through hoops (that sometimes feel like they are on fire no less) for things that are obviously best for Miss Emma?
Then, we have Emma the Exorcist. Yes, it makes my child sound demonic. However, lately whenever it is time for bed our child turns into someone that I have never seen before. I swear that her head is going to start spinning around soon. I believe that I have already caught a glimpse of the red eyes glowing in the dark as she throws toys at me and yells NO at the top or her lungs. It's not a pretty phase, and I do hope that it passes quickly because it is STRESSING ME OUT!
Then, we have the insurance case worker who has to call once a month to check on "Emma's status". She somehow caught wind that I am on bedrest, so today she called to 20 question me.....about ME! I had to chuckle just a tad when asked, "Is there anything that is causing you stress right now". HA!!! Funny lady:).
Ahhh, this is so theraputic. I can just feel the stress melting away:). Next, we have my husband who continually is gone on business trips. Granted, he is generally just gone a couple of days a week, but dealing with everything right now is just a tich too much. Next week is the last time that he will travel out of town until after Baby Boy is born. Can I hear a HOOORAAHHHH!!
Some days it just feels like I have one nerve left.....and it's wearing pretty thin.
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