A few weeks ago Rue was diagnosed with spherocytosis ~ a genetic blood disease that affects the cell membrane of her red blood cells, causing the cells to be irregularly shaped. These red blood cells are still healthy cells but her spleen does not recognize them as such so it consumes them. So, Rue is left with a very enlarged spleen and very low hemoglobin (which explains the constant afternoon naps.) While this disease is not curable (except by the hand of God) it is manageable and we are educating ourselves on how best to care for her. The doctors want to spend the next few months drawing regular blood panels on her so that they are able to determine a baseline for her and build some medical history before they make any further decisions about treating her. A few issues they will be looking at in the future are removal of the spleen and gall bladder, determining how her immune system responds to sickness, and watching to see if she has any severe drops in her blood numbers. Spherocytosis explains all the issues Will and I have wondered about ~ her slow growth rate, jaundice (we noticed in our December trip) and her constant fatigue.
Rue has endured all of the visits to the doctor, multiple blood draws and all the poking and prodding of the last few weeks with her sweet smile fully in tact. She has lived with pain and discomfort all her life and she actually seems relieved to finally have medical attention (even though that attention involves a few needles.)
This all began a few weeks ago when we headed to Charleston, SC to take the girls to the international adoption clinic at MUSC (Medical University of South Carolina and BJ's alma mater) to have a complete physical done for both girls. We spent about 5 hours in the clinic being ushered from one part of the clinic to the next and the girls received a full battery of tests. After our day at the hospital we met my family for dinner and when we got back in the car I had a message from a very concerned doctor. Now you have to understand that up until this point I have had nothing but amazingly healthy children, beginning in their pregnancies and carrying through to current day. I completely take for granted that my children are like small work horses and are doing fabulous physically. I lean very heavily to little to no medication and minimize trips to the doctor as much as possible; I am a firm believer in a healthy diet, a healthy living environment, plenty of sunshine and exercise, some good old fashioned "you are fine, you will survive the runny nose" medicine, and a lot of prayer. So, when I heard a very nervous doctor's voice asking me to "please call as soon as possible and you might need to bring her back to us and admit her" I was completely caught off guard. When we spoke and she began throwing around terms like "sickle cell" and "other genetic blood disorders" I frantically took notes on a scrap of paper I found in the car and found my mind swimming around in the dark looking for some solid ground to stand on. Ruppel kids are work horses, but I think I forgot to send that memo to Rue's tired little body.
As we drove back to Beaufort that night BJ and I hardly spoke, we both just prayed. I reminded God that we had been completely willing to work with the whole "deaf thing" but a sick child too? That was supposed to be the next adoption, after we had learned to navigate this crazy new life of ours. And I almost immediately felt guilty because I had had no idea how sick she was and then He said, "but I knew how sick she was and that is why I brought her to you, so you can care for her." In ET she had not been diagnosed and was receiving no medical treatment which would most likely have led to a spleen rupture or a crisis in her hemoglobin levels that her body could not have recovered from. After God's conversation with me that night I was fully convinced that she would have died a premature death in ET but He had a better plan for her and He has given us the privilege of being a part of His plan for Rue's life. So, God flew her half way around the world and deposited her into a home that happens to be near a phenomenal medical university with an outstanding adoption clinic and people say God does not do miracles anymore! Actually, every night that I tuck my six little darlings safely into bed and I have not lost any of them that day, they are clean in clean beds, somewhat happy, their bellies are full of healthy food and I have not rung any one's neck that day is a small miracle!! And God does that everyday here.
So now, three weeks later we have wrapped our heads around her condition and are comfortable about the medical care she will need. Tonight it feels normal, she is deaf and a little sick, that is who she is (for now, you never know what God has up His sleeve!) and we are blessed everyday to be a part of her life and to watch God move on her behalf. Since the beginning of this adoption process BJ and I and our four oldies have had front row seats to some pretty amazing miracles and I would not trade a moment of this "new, crazy life" for a moment of the "old, normal life."
A life completely invested in Him should look entirely abnormal and certainly a little crazy.
Rue has endured all of the visits to the doctor, multiple blood draws and all the poking and prodding of the last few weeks with her sweet smile fully in tact. She has lived with pain and discomfort all her life and she actually seems relieved to finally have medical attention (even though that attention involves a few needles.)
This all began a few weeks ago when we headed to Charleston, SC to take the girls to the international adoption clinic at MUSC (Medical University of South Carolina and BJ's alma mater) to have a complete physical done for both girls. We spent about 5 hours in the clinic being ushered from one part of the clinic to the next and the girls received a full battery of tests. After our day at the hospital we met my family for dinner and when we got back in the car I had a message from a very concerned doctor. Now you have to understand that up until this point I have had nothing but amazingly healthy children, beginning in their pregnancies and carrying through to current day. I completely take for granted that my children are like small work horses and are doing fabulous physically. I lean very heavily to little to no medication and minimize trips to the doctor as much as possible; I am a firm believer in a healthy diet, a healthy living environment, plenty of sunshine and exercise, some good old fashioned "you are fine, you will survive the runny nose" medicine, and a lot of prayer. So, when I heard a very nervous doctor's voice asking me to "please call as soon as possible and you might need to bring her back to us and admit her" I was completely caught off guard. When we spoke and she began throwing around terms like "sickle cell" and "other genetic blood disorders" I frantically took notes on a scrap of paper I found in the car and found my mind swimming around in the dark looking for some solid ground to stand on. Ruppel kids are work horses, but I think I forgot to send that memo to Rue's tired little body.
As we drove back to Beaufort that night BJ and I hardly spoke, we both just prayed. I reminded God that we had been completely willing to work with the whole "deaf thing" but a sick child too? That was supposed to be the next adoption, after we had learned to navigate this crazy new life of ours. And I almost immediately felt guilty because I had had no idea how sick she was and then He said, "but I knew how sick she was and that is why I brought her to you, so you can care for her." In ET she had not been diagnosed and was receiving no medical treatment which would most likely have led to a spleen rupture or a crisis in her hemoglobin levels that her body could not have recovered from. After God's conversation with me that night I was fully convinced that she would have died a premature death in ET but He had a better plan for her and He has given us the privilege of being a part of His plan for Rue's life. So, God flew her half way around the world and deposited her into a home that happens to be near a phenomenal medical university with an outstanding adoption clinic and people say God does not do miracles anymore! Actually, every night that I tuck my six little darlings safely into bed and I have not lost any of them that day, they are clean in clean beds, somewhat happy, their bellies are full of healthy food and I have not rung any one's neck that day is a small miracle!! And God does that everyday here.
So now, three weeks later we have wrapped our heads around her condition and are comfortable about the medical care she will need. Tonight it feels normal, she is deaf and a little sick, that is who she is (for now, you never know what God has up His sleeve!) and we are blessed everyday to be a part of her life and to watch God move on her behalf. Since the beginning of this adoption process BJ and I and our four oldies have had front row seats to some pretty amazing miracles and I would not trade a moment of this "new, crazy life" for a moment of the "old, normal life."
A life completely invested in Him should look entirely abnormal and certainly a little crazy.
I know this post is a few months old but I just stumbled upon it after looking up adoption. My bio son has spherocytosis (neither me or hubby have it). My son has had pneumonia 5 times and a blood transfusion in feb. his hemoglobuins got too low after a bout with double pneumonia. I have done extensive research on it and have amazing hematologists on our side. I just encourage you to not get the whole spleen removed when the time comes. Some drs are doing partial splenectomys which is the best to help regulate the antibodies produced by vaccinations. Very important. Also extra folic acid will help. My son is 4. I don't see your email address or I would have emailed this to you in case you had any questions.
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