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It's been a while since I've posted an update on AnnaSophia's medical status. Last time AnnaSophia's CMV levels were tested, she was finally negative. We finished out her antiviral, and, amazingly, she started eating better. The diarrhea got better, and the most amazing thing was that I noticed yesterday that she no longer has a coated tongue. This is truly noteworthy. She has had a coated tongue since she was orginally put on cardiac meds in January of 2008. Our transplant coordinator tried everything. AnnaSophia was on Nystatin, acidophilous and Gentian Violet. Nothing worked. We were so frustrated, and I finally just resorted to accepting that she would have a funky looking tongue forever. This seems minor, but we all rejoiced that this minor detail is better. We were so happy, that AnnaSophia walked around the rest of the night with her mouth open wide, showing everyone her "non-coated" tongue.
AnnaSophia is steadily gaining weight and is up to 19 pounds. She is walking everywhere, and is getting faster by the day. She is still not sleeping through the night. On good nights, she wakes once. On rough nights, she will be up two to three times. I know that she will eventually sleep through the night, and when she is weaned fully, I'm sure it will happen soon after. The funny thing is that I actually treasure those moments in the middle of the night, when just AnnaSophia and I are awake. There are no demands of the day; no laundry to do in the middle of the night. No meals to make, school to do, or dare I say, fights to break up. It's just her and I and a peaceful home.
AnnaSophia recently cut another tooth, bringing her tooth tally up to six. She is still teething pretty hard, and I can see two others trying to fight their way into the world. The thing she likes the best are frozen teethers. She will put one in her mouth and walk around with this frozen frog hanging out of her mouth. It's really too cute.
AnnaSophia's echo's are stable. From a cardiac standpoint, she is doing well. Her cardiac function is good. The concerns are that her aortic arch and her superior vena cava (SVC) have narrowed considerably, and she will need ballooning of both of those during her cardiac cath in July. Our hope is that the mild rejection cells that were present at her last cath are better in July. The biopsies are rated on a scale of 0-5. A rating of zero is actually the best she could get, meaning that there is no presence of rejection cells, and a rating of five is actually the worst. AnnaSophia's last biopsy was rated a 1A. We are praying that her heart cells will be a perfect zero.
Originally, our five month old little baby was on 11 different meds and was dosed 18 times a day to keep her from rejecting her new heart. She has come such a long way. AnnaSophia is now only taking two medications twice a day. By her one year anniversary, she will only be on her Neoral (immune-suppressant) twice a day to keep her from rejecting. I am absolutely amazed by this. She will have her med levels drawn every month to make sure she is getting just the right amount. She will go to clinic once every four months for an echo, EKG and check-up. In many ways, she will be living an extraordinarily normal life.
What I don't think people realize is that, even though she's doing so well now, she will get sick again. She will reject, she will get CMV, and she might even get another nasty virus, that could affect her negatively. She will require another transplant at some point in her life. The ideal goal would be for this graft to last her eighteen years, but the reality is that the transplant team does not know how long her heart will last. It really is dependant on AnnaSophia and various factors specific to her. No statistics can predicte what will happen with her. Each child's journey is so different.
As much as we are trying to go on living a "normal" life, we have been forever changed by our journey. We try not to get caught up in the "what ifs" and the "whens". We are aware of the fact that we have a child with a chronic illness, but we try to live like we don't. We don't want the family to get hung up on illness. We want to live the life that God intended for us, and with His help, we can make it through the challenging times.
Thank you for all of your prayers and concern for our family. We are forever grateful.
Mary
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let you requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.
Philippians 3:6-7
Tuesday, May 26, 2009
Thursday, May 21, 2009
Barney Beans
It's so fun to watch AnnaSophia grow up. She is starting to look more like a little girl and less like a baby. She loves playing with her brother and sister, and she is "talking" so much. Two of her favorite things are Elmo and Barney. She LOVES them. She has a plastic Elmo that she carries around, gives hugs to and pats on the back. Everytime she hears Barney's voice, she squeals with delight and dances to the songs. I mentioned to Steve that she has been on a vegetable strike. I tried them all ways, but she still refused any veggie. I then had the idea to rename her green beans Barney Beans. I told her how much Barney likes them, and we all ate one to show her how good they are. Then, Ethan, Steve and I all broke out into the "Have a Snack" song, interjecting Barney Beans into the verse. She started dancing, laughing and eating her Barney Beans! I have now decided that anytime she has an aversion to a food, we just need to simply name it after her favorite things, and of course, sing a song.
I cannot express what a blessing it is to see her thriving and growing. She has the sweetest little personality, and I am so thankful to see her blossoming into this beautiful little girl.
Mary
Sunday, May 10, 2009
Happy Mother's Day!
Happy Mother's Day to all of the wonderful mother's out there! I pray that all of you have been blessed today. I am so thankful for the blessing of being a mother. I have heard people say many times that being a mother is the toughest, yet most rewarding job there is. I don't want to sound cliche, but I have to agree. When you are a mother, you feel things more deeply. You love more deeply, protect more fiercely, instruct more diligently than you did before children. I hope and pray that they will always know how much I treasure and love them.
God's blessings to all,
Mary
Saturday, May 9, 2009
Slammed!
I am shaking as I write this. I cannot believe what just happened. I am sick in the very pit of my stomach. I was at a birthday lunch for a dear friend, and met a "friend" from our old church there. She initially had a hard time looking me in the face, but finally asked how my baby was. I explained that she is doing well, but had a few bumps in the road along the way. She told us that she heard there was a recent story on our daughter, but had not seen it. I explained that our goal was to really raise awareness about organ donation and the wonderful gift that it can be.
She apparently did not feel the same and proceeded to tell me that people in other countries are killed for their organs. I assured her that that does not occur in the United States, but she did not believe me. I explained that UNOS ensures that massive amounts of protocol are followed, so that everything through the process honors and respects everyone involved. She then proceeded to tell me that there was a recent lawsuit where the parents of a young man are accusing the doctors at the hospital for "killing" their son for his organs. I am aware of this case, and I hope that there was just a misunderstanding and lack of communication. Because of the number of people involved with transplant, I cannot see a mass "conspiracy" ocurring to kill a person for their organs. If anything, I pray that the family that lost their son will be comforted and find the truth.
There was such venom in this woman's demeanor, that I sat in shock. I felt sick to my stomach. Did she feel that it would have been better to let AnnaSophia die? I assured her that we were well aware of all of the protocol. I told her that AnnaSophia's donor family is absolutely wonderful, and that we are eternally grateful for the gift they gave our daughter. I think some people have such a difficult time putting themselves in other people's shoes, that they cannot even fathom the journey that we have endured. For the record, I told her that we did not specifically pray for a heart for our daughter. We did not pray for another child to die. We prayed to have the gift of time with our daughter. We prayed that the Lord's will would be done.
This woman is clearly ignorant of the donor process among other things. She clearly has no idea what the recipient families go through. She has no idea the grief and the process that the donor families go through. She also clearly has no idea what it's like to have a sick child, even though she has eight. She told me that she also heard that our other children were sick, and proceeded to tell me that we needed serious spiritual intervention. She believes that our family needs to be spiritually cleansed of whatever demons seem to be wreaking havoc here.
I don't know why some families are handed more difficult situations than others, but Jesus never promised life would be easy this side of Heaven. This woman, even though she calls herself a Christian, does not mirror the love and compassion of Jesus. She has a cold heart, and her self-righteousness is hurtful to others. My daily prayer is that somehow we would bring glory to God through our daily lives and testimony. I pray that we would somehow be a blessing to others. I just hope that as this woman stands before Jesus one day, she will not be judged too harshly, and that no one else has to endure her harsh words.
Mary
The Lord is close to the brokenhearted,
and he saves those whose spirits have been crushed.
Psalm 34:18
She apparently did not feel the same and proceeded to tell me that people in other countries are killed for their organs. I assured her that that does not occur in the United States, but she did not believe me. I explained that UNOS ensures that massive amounts of protocol are followed, so that everything through the process honors and respects everyone involved. She then proceeded to tell me that there was a recent lawsuit where the parents of a young man are accusing the doctors at the hospital for "killing" their son for his organs. I am aware of this case, and I hope that there was just a misunderstanding and lack of communication. Because of the number of people involved with transplant, I cannot see a mass "conspiracy" ocurring to kill a person for their organs. If anything, I pray that the family that lost their son will be comforted and find the truth.
There was such venom in this woman's demeanor, that I sat in shock. I felt sick to my stomach. Did she feel that it would have been better to let AnnaSophia die? I assured her that we were well aware of all of the protocol. I told her that AnnaSophia's donor family is absolutely wonderful, and that we are eternally grateful for the gift they gave our daughter. I think some people have such a difficult time putting themselves in other people's shoes, that they cannot even fathom the journey that we have endured. For the record, I told her that we did not specifically pray for a heart for our daughter. We did not pray for another child to die. We prayed to have the gift of time with our daughter. We prayed that the Lord's will would be done.
This woman is clearly ignorant of the donor process among other things. She clearly has no idea what the recipient families go through. She has no idea the grief and the process that the donor families go through. She also clearly has no idea what it's like to have a sick child, even though she has eight. She told me that she also heard that our other children were sick, and proceeded to tell me that we needed serious spiritual intervention. She believes that our family needs to be spiritually cleansed of whatever demons seem to be wreaking havoc here.
I don't know why some families are handed more difficult situations than others, but Jesus never promised life would be easy this side of Heaven. This woman, even though she calls herself a Christian, does not mirror the love and compassion of Jesus. She has a cold heart, and her self-righteousness is hurtful to others. My daily prayer is that somehow we would bring glory to God through our daily lives and testimony. I pray that we would somehow be a blessing to others. I just hope that as this woman stands before Jesus one day, she will not be judged too harshly, and that no one else has to endure her harsh words.
Mary
The Lord is close to the brokenhearted,
and he saves those whose spirits have been crushed.
Psalm 34:18
Sunday, May 3, 2009
Living vs. Surviving
These past two weeks have been tough. I usually put on my armor, deal with what were handed head on, and I don't dwell on things for too long. The situation at hand is what it is. But the last week, I have found myself dragging - physically and emotionally. Is it the lack of sleep? Do I need a vacation? The answer is probably a little of both...and more. It dawned on me yesterday that we have been doing a lot of surviving, but very little living. I mean living in a "more than just existing" sense.
Emily has asked a lot, "Are we going to have fun today?". "When are we going to go on a vacation?" Her days have consisted of being sick, running to doctor's appointments, running to the hospital's lab, etc. Both Ethan and Emily have done their schoolwork in the car, at the doctor's office, at the hospital, etc. Even though I try during the "good weather" days to inject a visit to the park, something is missing.
Joy is missing. At least it feels like it at times. In its place has been stress, fatigue and illness. I feel like a soldier who has gone to battle repeatedly, with little time to rest his weary body. There are dents in my armor and my strength is wearing thin. During the tough times of the past year, I have relied on the Lord so heavily, I KNOW that He carried me. Now my weary prayers have been short and have resembled something like, "Lord, you know what I/we need. Please meet us here.". And the Lord has answered these prayers time and time again. Thank you, Jesus.
I do not want to appear unthankful. On the contrary, I am very thankful that we have made it through the past two weeks, scary moments and all, and we can say that we conquered the virus. Woohoo!!! Ethan hopefully will not have permanent liver damage. His platelets are in normal range again. Emily is great. AnnaSophia is fantastic. But realistically, I worry about Ethan and the medications he is on.
Ethan's pediatrician and I discussed his meds, and the reality is that any of the medications he will need to take could cause some very serious problems. That's why they monitor him so closely. Basically, she told me that you pretty much trade one chronic illness for another...like AnnaSophia. We have traded a child who could not function physically, emotionally and socially for a child who is doing much better, but might have blood, kidney or liver problems. AnnaSophia traded in a heart with severe defects, congestive heart failure and imminent death for a heart that is normal, but her meds can lead to kidney, liver, or cancer issues.
So we watch, and pray and wait. We put our children in the hands of our Almighty, and we let Him be in control. We have faith and ask for wisdom, but in the mean time, we need to catch a break and start living, not just merely surviving. I want the children to have happy memorable moments of our time together as a family. I want them to enjoy a wonderful, QUALITY life. And most of all, I want them to have abounding faith and relationship with our Lord and Savior.
Mary
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.
James 1:2-4
Emily has asked a lot, "Are we going to have fun today?". "When are we going to go on a vacation?" Her days have consisted of being sick, running to doctor's appointments, running to the hospital's lab, etc. Both Ethan and Emily have done their schoolwork in the car, at the doctor's office, at the hospital, etc. Even though I try during the "good weather" days to inject a visit to the park, something is missing.
Joy is missing. At least it feels like it at times. In its place has been stress, fatigue and illness. I feel like a soldier who has gone to battle repeatedly, with little time to rest his weary body. There are dents in my armor and my strength is wearing thin. During the tough times of the past year, I have relied on the Lord so heavily, I KNOW that He carried me. Now my weary prayers have been short and have resembled something like, "Lord, you know what I/we need. Please meet us here.". And the Lord has answered these prayers time and time again. Thank you, Jesus.
I do not want to appear unthankful. On the contrary, I am very thankful that we have made it through the past two weeks, scary moments and all, and we can say that we conquered the virus. Woohoo!!! Ethan hopefully will not have permanent liver damage. His platelets are in normal range again. Emily is great. AnnaSophia is fantastic. But realistically, I worry about Ethan and the medications he is on.
Ethan's pediatrician and I discussed his meds, and the reality is that any of the medications he will need to take could cause some very serious problems. That's why they monitor him so closely. Basically, she told me that you pretty much trade one chronic illness for another...like AnnaSophia. We have traded a child who could not function physically, emotionally and socially for a child who is doing much better, but might have blood, kidney or liver problems. AnnaSophia traded in a heart with severe defects, congestive heart failure and imminent death for a heart that is normal, but her meds can lead to kidney, liver, or cancer issues.
So we watch, and pray and wait. We put our children in the hands of our Almighty, and we let Him be in control. We have faith and ask for wisdom, but in the mean time, we need to catch a break and start living, not just merely surviving. I want the children to have happy memorable moments of our time together as a family. I want them to enjoy a wonderful, QUALITY life. And most of all, I want them to have abounding faith and relationship with our Lord and Savior.
Mary
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.
James 1:2-4
Friday, May 1, 2009
AnnaSophia's Fox 21 Story
Here is the link for AnnaSophia's story:
http://www.coloradoconnection.com/news/video.aspx?id=293212
http://www.coloradoconnection.com/news/video.aspx?id=293212
Good News!
Ethan, Emily and AnnaSophia are pretty well over the virus that has kept the family down for nearly two weeks. AnnaSophia amazed us all with how quickly she recovered from it, and she didn't get nearly as sick as her brother and sister. Ethan was the one that worried us with his Thrombocytopenia.
After consulting with the hemotologist over the weekend, the doctors decided that he needed to have a CBC drawn every three days to monitor his platelets. I just heard from the doctor today that Ethan's platelets skyrocketed to 200! Normal is somewhere between 150 to 375. This was wonderful news! His white blood cell count is still low, making the doctor think that this is the result of viral suppression. I just thank God that he is recovering and doing so much better!!! The doctor seems to think that we should continue his Depakote since it is managing his emotions so well, but we will need to have a CBC drawn every six months to check his platelets. Steve and I are still mulling this one over.
Grammy and Paw Paw have been wonderful in helping us during these last two weeks, but unfortunately, they are now very sick with this virus. I feel so bad that we got them sick, and we pray for healing for both of them. Thank you for all who have faithfully prayed for our family.
Mary
After consulting with the hemotologist over the weekend, the doctors decided that he needed to have a CBC drawn every three days to monitor his platelets. I just heard from the doctor today that Ethan's platelets skyrocketed to 200! Normal is somewhere between 150 to 375. This was wonderful news! His white blood cell count is still low, making the doctor think that this is the result of viral suppression. I just thank God that he is recovering and doing so much better!!! The doctor seems to think that we should continue his Depakote since it is managing his emotions so well, but we will need to have a CBC drawn every six months to check his platelets. Steve and I are still mulling this one over.
Grammy and Paw Paw have been wonderful in helping us during these last two weeks, but unfortunately, they are now very sick with this virus. I feel so bad that we got them sick, and we pray for healing for both of them. Thank you for all who have faithfully prayed for our family.
Mary
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