Samuel’s Story
Having
turned EIGHT in July, Samuel continues to bless us each day with many
smiles & giggles. Even with his many medical problems, he seldom
has a bad day. Reading books & eating lunch seem to be his favorite
things, other than smiling at his many girlfriends! God continues to
teach us about His kingdom through Samuel & we pray Samuel is a
blessing to you as well. (FROM AUNT LORETTA) Samuel turned 3 on July 24, 2007. He was born to Buddy and Beth Arnold after five years of marriage. They have one other child in heaven who was miscarried in 2003.
Part of their story you must also know is that Buddy is a Cutaneous T-cell Lymphoma (CTCL) survivor. As long as skin lesions are caught early, the survival statistics are great, if the disease progresses into the lymphatic system, the resulting tumors all over the body are not so easily treated. Currently the treatment is taking an oral chemotherapy agent followed by a phototherapy (sort of like a tanning bed with bad side effects) treatment. Buddy had treatment after coming out of remission in 1998-1999. He currently has a lesion on his arm and is followed at Vanderbilt.
Samuel was born over 6 weeks before his due date and the complications seemed overwhelming, but already Beth & Buddy were looking at their circumstances, seeing blessings and being thankful. Samuel (Buddy & Beth) spent the first 100 days of his life in the neonatal intensive care unit, coming home in October with a heart monitor, respiratory/apnea monitor, oxygen, and a feeding tube in his nose. During his relatively short life, Samuel has endured two major surgeries: Repair of Duodenal Atresia to connect his stomach and small intestines during his third day of life and open heart surgery at nine months of age to repair an atrial septal defect. Samuel has many health challenges including deafness that resulted after birth as a complication (he wears 2 hearing aids and will be evaluated for a cochlear implant eventually). Some of his problems are related to Down's syndrome: difficulty w/vision; cataracts (which will be removed and a corneal lens placed); weakness of his eye muscles (which will be repaired at the same time of the other eye surgery); failure to thrive, that has resulted in general muscle weakness and his inability to be mobile or hold his head up, or gain weight (In January, we celebrated that Sam finally weighs 20 pounds; a testicle that has failed to descend (which will eventually require surgery, men with Down's have a very high testicular cancer rate); problems related to having a smaller anatomy including frequent ear infections (he had tubes placed three times), frequent sinus infections and most recently it was discovered that his airway is blocked by tonsils and adenoids that are too large for his anatomy; trachealmalasia and larynglmalasia, a weakening in the cartilage that forms his trachea and larynx (this also contributes to his blocked airway); as well as a hernia in his diaphragm (which will need surgery as well). Sam has undergone medical tests too many to even begin to list, consults with neurology, EarNoseThroat, infectious desease, gastroenterology, cardiology, hematology, and pulmanology just to name the big ones. He underwent blood transfusions (which we had to solicit donors for since there was a shortage of his blood type) during his heart surgery. He continues to have times when he vomits and seems to have abdominal pain shortly after eating with no obvious cause found after multiple tests.
Each time I create this list and add to it, it overwhelms me completely in what this little boy has endured and still has to go through. Yet, when not in pain, Samuel is a joy, responsive to the people in his world. He responds to the deep tone of his Daddy's voice, can rotate his body 360 degrees on a mat on the floor by lifting his body and using his legs. He can hold his head up for very brief periods of time. He has his favorite toys that he always responds to and reaches for. He can stand with assistance with an exercise ball or mommy & daddy for a very brief period of time. Samuel can and does giggle...giggling just doesn't always sound the way we expect....his giggles are a total body experience, an open mouthed grin so wide and just a little sound that expresses pure joy. All things are to bring glory to God, the father and I suspect the blessing of Samuel's life will teach us things that God can do no other way. I continue to pray we are all brave in the molding process...Samuel is a unique creation of God who may just be here on this earth to show us how to live with our own handicaps (lack of faith, trust in God etc), not his.
AND thank YOU for praying. I know that how our Sovereign God works in the details of this situation is not in our control, but I KNOW that we are assured that our prayers are effective and make a difference in what God chooses to do. In the quiet weariness of the middle of night when they might think for a moment, "Can I do this?", they are comforted by knowing someone in Japan, China, Scotland, England or Afghanistan are having time with our Lord and might be praying!
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