Tuesday, September 30, 2008
Don't Say That!!!
Funny little story here....I was in the shower with Emma the other day. She has a water bottle that she likes to play with after she is all clean. I let her sit on the floor of the shower and I fill the bottle with cold water. She thinks it is just HILARIOUS to spray the cold water on my feet. So, as a little speech therapy, I always make her ask, "More water please Mommy". Well, she has been able to say that for awhile. SO, the other day I decided to have her say, "I want more water please mommy". She did it.....AWESOME!! (that's a 6 word sentence....can I hear a YA HOOOOO!!). So, she said it once, I gave her cold water, and she sprayed it all over my feet while laughing hysterically! Then, she handed me the water bottle and said, "More water please mommy". I said, "no, say I want more water please mommy". She looked at me, rolled her eyes and said, "DON'T SAY THAT MOMMY". I had to laugh and aplaud her for her talking! Even though it was sassy...it was GREAT! You go little girl! Momma loves to hear you talk:).
Friday, September 26, 2008
Making progress
Since my last post I have made some progress. For me and my emotional outlook...it is always two steps forward and one step back. However, I figure as long as it is still 2 steps forward I am making progress, right? I'm not sure that I will ever be 100% OK with the fact that Emma's not "normal"(I'm more than OK with Emma....just not the circumstances), and I guess that is OK. It's difficult when you dream about your child your entire life, you get pregnant and the whole 9 months you plan their future, and in the blink of an eye everything that you had planned changes. It's not necessarily bad that it changes. It's just difficult to wrap your mind around your entire future looking different than you had ever dreamed.
It's almost like I have 2 personalities these days.
There's the one personality who obviously loves Emma no matter what (actually BOTH personalities feel that way), but this personality is just the go with the flow type of gal who can take whatever comes and make the very best of it. Yes, this personality knows that I'm going to be OK no matter what. I can take it, and I'm going to be strong through it all.
THEN, there is personality number two that doesn't know how I'm EVER going to do this. This personality is angry and bitter. This personality wants to spit in the face of anyone that has never had to deal with accepting that their child will never be "normal"...those who look down their nose at me because their lives are "normal".
Yesterday a mom of one of my students was talking to me (she has 3 children...all of them "typical). She said to me, "I think God choses those who can handle having a child with special needs". While I do believe a part of this is true.....What is the deciding factor on this? What did I ever do to make me "worthy" and not this mother that said this to me?
Yes, I am proud of my Emma. She is my world. She makes everyone smile and realize that life IS good. It's just that a little tiny piece of my heart aches when the children in her class ask why she doesn't talk like they do...or she pushes someone (because she's trying to get their attention) and the other child sees it as Emma being mean. It's times like that that I have to ask WHY??
It's like I told this mom...."I truly believe that every parent should have to experience having a special needs child for a few years and then it is someone elses turn". They do teach you so so much that I think everyone should be given the same opportunities. At the same time I think that all parents of children with special needs should have the experience of living a "normal" life with their children.
Ahhhh, what changes there would be if I was in charge of the world.
It's almost like I have 2 personalities these days.
There's the one personality who obviously loves Emma no matter what (actually BOTH personalities feel that way), but this personality is just the go with the flow type of gal who can take whatever comes and make the very best of it. Yes, this personality knows that I'm going to be OK no matter what. I can take it, and I'm going to be strong through it all.
THEN, there is personality number two that doesn't know how I'm EVER going to do this. This personality is angry and bitter. This personality wants to spit in the face of anyone that has never had to deal with accepting that their child will never be "normal"...those who look down their nose at me because their lives are "normal".
Yesterday a mom of one of my students was talking to me (she has 3 children...all of them "typical). She said to me, "I think God choses those who can handle having a child with special needs". While I do believe a part of this is true.....What is the deciding factor on this? What did I ever do to make me "worthy" and not this mother that said this to me?
Yes, I am proud of my Emma. She is my world. She makes everyone smile and realize that life IS good. It's just that a little tiny piece of my heart aches when the children in her class ask why she doesn't talk like they do...or she pushes someone (because she's trying to get their attention) and the other child sees it as Emma being mean. It's times like that that I have to ask WHY??
It's like I told this mom...."I truly believe that every parent should have to experience having a special needs child for a few years and then it is someone elses turn". They do teach you so so much that I think everyone should be given the same opportunities. At the same time I think that all parents of children with special needs should have the experience of living a "normal" life with their children.
Ahhhh, what changes there would be if I was in charge of the world.
Monday, September 22, 2008
Today...Breath...Get through Today
Why is it that some days are like this? Today I saw a little girl doing cartwheels while her mom was trying to get her into the car. I saw her and all I could think was, "That's supposed to be my little girl....why why why???". Just when you think that you won't ever ask "why?" again. Just when you think you are comfortable with life and where your child is....it hits you like a ton of bricks. Damn it!!! It's just not fair! Yes, I am so very thankful that she is alive! I am so thankful that she is who she is and that she shines sunshine into very dark places, but sometimes I just have to ask WHY!!!
I listen to the children in my class talk about Emma. They are so sweet saying, "Emma is just very little" or "she is young". While I am so happy that the others are so accepting...I just wish....oh how I wish!!
Yes, I am having my own pity party! I am....I am entitled. It won't last forever...but, it is what it is.
Here's a little picture of my 2 to brighten this post:). Enjoy!
I listen to the children in my class talk about Emma. They are so sweet saying, "Emma is just very little" or "she is young". While I am so happy that the others are so accepting...I just wish....oh how I wish!!
Yes, I am having my own pity party! I am....I am entitled. It won't last forever...but, it is what it is.
Here's a little picture of my 2 to brighten this post:). Enjoy!
Sunday, September 07, 2008
Where does the time go??
I honestly can't believe that September is here...and our weather feels like Christmas is just around the corner. I wouldn't be surprised at all if I woke up to snow in the morning?? CRAZY!
Well, here are some pictures of a few things that have happened in our household lately....
We had Owen baptized in August. We have many pictures, but this is BY FAR my favorite:)
Then, Emma started Kindergarten! I can't believe it, but my baby girl is in big kid school! She absolutely LOVES it. They are long days for her, but she is doing GREAT! She says her favorite thing so far is the FREEZE song:). It's so fun to be able to watch her interact with the other kids. She is a peanut with a giant personality:).
Then, here is a picture of Big Boy Owen. He is growing so fast. It is fun to watch him:). He is now almost 14 lbs. He is rolling both ways, and can he ever carry on a conversation with himself:). He is loving daycare:).
Enjoying fall...wouldn't mind a little more summer, but we'll take what we can get:).
Well, here are some pictures of a few things that have happened in our household lately....
We had Owen baptized in August. We have many pictures, but this is BY FAR my favorite:)
Then, Emma started Kindergarten! I can't believe it, but my baby girl is in big kid school! She absolutely LOVES it. They are long days for her, but she is doing GREAT! She says her favorite thing so far is the FREEZE song:). It's so fun to be able to watch her interact with the other kids. She is a peanut with a giant personality:).
Then, here is a picture of Big Boy Owen. He is growing so fast. It is fun to watch him:). He is now almost 14 lbs. He is rolling both ways, and can he ever carry on a conversation with himself:). He is loving daycare:).
Enjoying fall...wouldn't mind a little more summer, but we'll take what we can get:).
Tuesday, August 05, 2008
Today You're 5
Today is the day....my big girl (who is 33 lbs. and 37 1/2 inches tall) is 5 years old! Honesty is what I'm going to write today. I looked back at my blog this morning to see what Emma was doing at this time last year, and I think that I have always been very vague about Em's accomplishments (as a protection for myself). Now, I really wish that I had written about it because I KNOW that she has made leaps and bounds in the past year. SO, here goes.....Emma says so many words now. She will repeat any word that you give her (it may or may not sound the same). She puts together many 2 and 3 word phrases. "I go", "all done", I U Mommy" (ie...I love you mommy...makes a momma's heart proud), "no way", and many many many more. She can count to 10...although she ALWAYS leaves out 7. She loves the numbers 8, 9, and 10. We are working on identifying colors....but we're not there yet. She can match anything....the girl LOVES to match. She loves to play with Barbies and Hannah Montana:(! In the past year she had learned how to jump off of things and she's learned how to ride a tricycle (although she still doesn't LIKE to ride her tricycle). She can eat anything (except her allergens) and drink straight liquids (without thickener) without getting sick. Em loves to sing, and will try to sing every song that she hears.
Overall, Emma's come a long long ways. We still have a long way to go, but we are enjoying each new milestone that she makes. Life is good.
Overall, Emma's come a long long ways. We still have a long way to go, but we are enjoying each new milestone that she makes. Life is good.
Monday, August 04, 2008
The Big 5!!!
Dear Little Missy Moo Emma Loo,
I cannot believe that tomorrow it will be 5 years since I first saw your beautiful face. I remember the first time that I saw your long black hair and heard your sweet little cry. I knew at that moment that you were mine and I would do everything in my power to always protect you. You were my sweet precious baby, and I loved you more than life.
That first year was tough. I saw you fight for your life so many times. You hung on and successfully made it over every hurdle with ease. You amazed all of us including the medical professionals. I saw you in pain so many times, and I cried for you wishing that I could take your place and make the bad times go away. We saw you transform from the very fragile caterpillar to an amazing strong butterfly. You found your wings, and you flew! Everywhere that you would go people would comment on your beauty. You knew how to work a room. Your personality just shone, and there was rarely a moment when you were not smiling.
Today, I look at you and I am in awe. Life is still challenging in so many ways, however you never let it get you down. You are the strongest person that I know. Your beauty and personality have become even larger than I ever imagined they could be. I look at you when you are telling me, "NO MOMMY!" and while it makes me frustrated that you don't want to listen to me....I always take a step back and appreciate the spunky little spitfire girl that you have become. You are my baby that they said would never walk....as you run from me laughing. You are my baby that they said would never talk, as you sing the song, "ONE DAY!" over and over and over and over.
Sing away sweet songbird. Your voice is the sweetest most wonderful sound that I have ever heard. Your mission in life is unknown, but you have already accomplished so much. Everyday I thank God that you have made it through all that you have. You are my angel sent from Heaven above to teach me and so many others about love and patience. Thank you for choosing me to be your Momma! I am one lucky lady.
Love,
Mommy
I cannot believe that tomorrow it will be 5 years since I first saw your beautiful face. I remember the first time that I saw your long black hair and heard your sweet little cry. I knew at that moment that you were mine and I would do everything in my power to always protect you. You were my sweet precious baby, and I loved you more than life.
That first year was tough. I saw you fight for your life so many times. You hung on and successfully made it over every hurdle with ease. You amazed all of us including the medical professionals. I saw you in pain so many times, and I cried for you wishing that I could take your place and make the bad times go away. We saw you transform from the very fragile caterpillar to an amazing strong butterfly. You found your wings, and you flew! Everywhere that you would go people would comment on your beauty. You knew how to work a room. Your personality just shone, and there was rarely a moment when you were not smiling.
Today, I look at you and I am in awe. Life is still challenging in so many ways, however you never let it get you down. You are the strongest person that I know. Your beauty and personality have become even larger than I ever imagined they could be. I look at you when you are telling me, "NO MOMMY!" and while it makes me frustrated that you don't want to listen to me....I always take a step back and appreciate the spunky little spitfire girl that you have become. You are my baby that they said would never walk....as you run from me laughing. You are my baby that they said would never talk, as you sing the song, "ONE DAY!" over and over and over and over.
Sing away sweet songbird. Your voice is the sweetest most wonderful sound that I have ever heard. Your mission in life is unknown, but you have already accomplished so much. Everyday I thank God that you have made it through all that you have. You are my angel sent from Heaven above to teach me and so many others about love and patience. Thank you for choosing me to be your Momma! I am one lucky lady.
Love,
Mommy
Saturday, August 02, 2008
The Mind is a Scary Place
At times I worry that my mind cannot quite comprehend everything that happens in my world. I think that part of my mind is just my "tune out zone". When things get too complicated I just go to that place....and it makes me happy again. I find myself needing to do this a lot lately. There are so many big changes that are coming....and they are coming SOON! First, Emma will be 5...can you believe it??? 5 YEARS OLD!!! Where did all of the time go?? Second, Emma will be starting KINDERGARTEN! Yikes!! AND she will be IN MY CLASS. While an enormous part of me is so excited about this, and we did push for this to happen....a small part of me is scared out of my mind. Does that make me a bad parent?? Just the thought of it is making my mind go to its "happy place".
I know that Emma will be fine. It's me that I worry about. Not me as the teacher....she will be fine also. It's me as the Momma...who's heart literally gets ripped right out of my chest anytime that I see kids being mean to my little girl. Kids can be brutal! I know that I was probably brutal to kids who were different (meaning had special needs) when I was a kid, but I really wish that if I was mean I could turn back time and make it "all better" (Emma's favorite saying right now). I think that it will be difficult to try to explain to other students in my class why Emma is "different". I think it will be very difficult to seperate the teacher from the Momma in those situations. BUT, they will come and we will get through it. My mind will just go to the "happy place".
I find that since Emma was born I am much more outspoken than I ever was before. I have always been a fun and outgoing person. Now, I find that I am still me...with just a little more fire when it comes to certain subjects. Here is an example.....I frequent (many times daily) a website that has families of children with liver disease. I LOVE the people on the website and have made some wonderful friends who are on similar journeys. I have always felt that I am a big part of that website because Emma is the same as those children. I know that Emma has other issues, but I allow my mind to go to the "happy place", and I can make myself believe sometimes that liver disease is all that we are facing. However, TODAY one particular post hit me right in the heart! It made me feel like I had been knocked down on the floor and I was gasping for air. Really, it was a simple word that the mother wrote. Her child had just had a liver transplant yesterday and she was angry at a nurse. However, the one little word that she wrote made me lose a little respect for this mother, and it made me feel like she is one of the priviledged ones in the world.....a mother who does not have a child who is of lower intelligence. The mother wrote , "Does the nurse think I am a retard???". Yes, her child just had a transplant....I know that the mother is not "lucky". I know that she is hurting inside, and it was just a flippant comment. Before I had Emma the comment would have struck me as a little odd, but it would not have had the impact that it had on me today. It took everything in my not to PM her and tell her that it was inappropriate. But, #1 her child is very sick, and it would be very bad timing on my part. AND, #2 I know that it wasn't intended to be mean......my heart is just fragile.
So, today my mind will just go to my "happy place". Today I will count my blessings that my baby girl is almost 5 and will be going with me to kindergarten. Today I will be a happy momma who loves my girl no matter what.
I know that Emma will be fine. It's me that I worry about. Not me as the teacher....she will be fine also. It's me as the Momma...who's heart literally gets ripped right out of my chest anytime that I see kids being mean to my little girl. Kids can be brutal! I know that I was probably brutal to kids who were different (meaning had special needs) when I was a kid, but I really wish that if I was mean I could turn back time and make it "all better" (Emma's favorite saying right now). I think that it will be difficult to try to explain to other students in my class why Emma is "different". I think it will be very difficult to seperate the teacher from the Momma in those situations. BUT, they will come and we will get through it. My mind will just go to the "happy place".
I find that since Emma was born I am much more outspoken than I ever was before. I have always been a fun and outgoing person. Now, I find that I am still me...with just a little more fire when it comes to certain subjects. Here is an example.....I frequent (many times daily) a website that has families of children with liver disease. I LOVE the people on the website and have made some wonderful friends who are on similar journeys. I have always felt that I am a big part of that website because Emma is the same as those children. I know that Emma has other issues, but I allow my mind to go to the "happy place", and I can make myself believe sometimes that liver disease is all that we are facing. However, TODAY one particular post hit me right in the heart! It made me feel like I had been knocked down on the floor and I was gasping for air. Really, it was a simple word that the mother wrote. Her child had just had a liver transplant yesterday and she was angry at a nurse. However, the one little word that she wrote made me lose a little respect for this mother, and it made me feel like she is one of the priviledged ones in the world.....a mother who does not have a child who is of lower intelligence. The mother wrote , "Does the nurse think I am a retard???". Yes, her child just had a transplant....I know that the mother is not "lucky". I know that she is hurting inside, and it was just a flippant comment. Before I had Emma the comment would have struck me as a little odd, but it would not have had the impact that it had on me today. It took everything in my not to PM her and tell her that it was inappropriate. But, #1 her child is very sick, and it would be very bad timing on my part. AND, #2 I know that it wasn't intended to be mean......my heart is just fragile.
So, today my mind will just go to my "happy place". Today I will count my blessings that my baby girl is almost 5 and will be going with me to kindergarten. Today I will be a happy momma who loves my girl no matter what.
Saturday, May 17, 2008
4 days later....a prince is born
4 days after my last post....our prince decided it was time to make his entrance into the world. What an amazing entrance it was!! He decided to be born on one of my very best friend's birthdays.....April 28th....Happy Birthday Becky...AND Owen Edward James __________. He was 4 weeks early but healthy as can be:). He tipped the scales at 6 lbs. 14 oz. and 20 inches long. He really is amazing! Eating, sleeping, pooping, peeing (everywhere:)...boys are so much fun:)). What more can we ask for?? Here are a few pictures of the Prince...and one with the Princess. She's still not sure what to think of him! When he cries she yells at him, "STOP...no crying!!!" (Like that's going to make him stop??). She does love to hold him and kiss him too.
Owen's 1st picture....he's pretty relaxed:):
Here is Emma thinking, "If I just keep this plug in....he won't cry"
Owen's 1st picture....he's pretty relaxed:):
Here is Emma thinking, "If I just keep this plug in....he won't cry"
Thursday, April 24, 2008
Falling into place....???....
I am going to knock on wood before I even type this post, but things really do seem to be falling into place. I am back to work, and feeling pretty darn good I have to say. I have 19 days to go until my scheduled c-section date, however my OB doesn't seem to think I will make it that long...and at this point I am OK with that. The ultrasound on Monday showed that my baby boy weighs a whopping 7 lbs. 3 oz. (YEAH C-section!). I feel an overwhelming sense of peace about his health, and I think that is a very good sign.
The planets also seem to be properly aligned at this moment. The BIG news since the last time I posted....EMMA GETS TO COME TO MY SCHOOL! Yes, I will have the ultimate priviledge of being her teacher next year. I can't even begin to explain what a huge weight that was off of my shoulders. I am so excited to see her get on the bus the first day with her brand new lunch box (Lord only knows what she will want to pack in it) and her pretty little dress. She is such a big girl, and I am just blessed to be able to be her first teacher in the public school setting.
We also had Emma's transition meeting last night (2 1/2 HOURS!!!)(Transitioning from pre-school to public school). I was extremely nervous about this meeting as her pre-school therapists go through all of her strengths, weaknesses, and.......show us the testing that shows where she is "developmentally". I have asked to not see any of the "scores" for these tests since Emma was 18 months. Seeing the scores back then did NOTHING for me! It just sent me into a crazy funk, and made me feel disconnected with my child....not very promising for either of us. I knew going into this meeting that I would be shown those scores, and I had prepared myself. However, when they got to that part of the meeting (and that part of the 3" thick packet of paperwork) there was a page that was folded in half. It was her scores!! They "had" to give them to me, but I am so glad that I didn't "have" to see them. No, I am not an ostrich with my head in the sand. I KNOW that Emma is developmentally behind her peers in ALL areas, BUT she is EXACTLY where she is supposed to be! That is truly all that I care about. Tell me what goals she has met (for her), and tell me where we need to go from here. End of story. The meeting went well, and I left with a positive feeling that next year Miss Emma is going to shine!!
Also, last week I found daycare for baby boy:). That was a HUGE relief!!! We live in a town of about 8,000. We don't have many daycares, and it seems that EVERYONE that works for the school district that is in the childbearing years is pregnant! Each daycare can only take 2 infants, so when I heard that the daycare that was #1 on my list had an infant opening I literally sprinted to the phone....which was not at all pretty by the way! I know the owner and I have since high school. I am just very excited!
So, that's our lives in a nutshell! Things are feeling pretty good, and I am so glad to know that the planets have finally figured it out and found that perfect alignment:).
The planets also seem to be properly aligned at this moment. The BIG news since the last time I posted....EMMA GETS TO COME TO MY SCHOOL! Yes, I will have the ultimate priviledge of being her teacher next year. I can't even begin to explain what a huge weight that was off of my shoulders. I am so excited to see her get on the bus the first day with her brand new lunch box (Lord only knows what she will want to pack in it) and her pretty little dress. She is such a big girl, and I am just blessed to be able to be her first teacher in the public school setting.
We also had Emma's transition meeting last night (2 1/2 HOURS!!!)(Transitioning from pre-school to public school). I was extremely nervous about this meeting as her pre-school therapists go through all of her strengths, weaknesses, and.......show us the testing that shows where she is "developmentally". I have asked to not see any of the "scores" for these tests since Emma was 18 months. Seeing the scores back then did NOTHING for me! It just sent me into a crazy funk, and made me feel disconnected with my child....not very promising for either of us. I knew going into this meeting that I would be shown those scores, and I had prepared myself. However, when they got to that part of the meeting (and that part of the 3" thick packet of paperwork) there was a page that was folded in half. It was her scores!! They "had" to give them to me, but I am so glad that I didn't "have" to see them. No, I am not an ostrich with my head in the sand. I KNOW that Emma is developmentally behind her peers in ALL areas, BUT she is EXACTLY where she is supposed to be! That is truly all that I care about. Tell me what goals she has met (for her), and tell me where we need to go from here. End of story. The meeting went well, and I left with a positive feeling that next year Miss Emma is going to shine!!
Also, last week I found daycare for baby boy:). That was a HUGE relief!!! We live in a town of about 8,000. We don't have many daycares, and it seems that EVERYONE that works for the school district that is in the childbearing years is pregnant! Each daycare can only take 2 infants, so when I heard that the daycare that was #1 on my list had an infant opening I literally sprinted to the phone....which was not at all pretty by the way! I know the owner and I have since high school. I am just very excited!
So, that's our lives in a nutshell! Things are feeling pretty good, and I am so glad to know that the planets have finally figured it out and found that perfect alignment:).
Saturday, March 29, 2008
This Life
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.
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.
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!
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