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    Posted July 4, 2014 by
    senorajeni
    Location
    North Carolina
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    Overcoming Cancer, special always

     
    Our son was diagnosed with cancer at 20 months old. Acute Lymphoblastic Leukemia were the words laid out slowly and carefully after 3 harrowing months of testing, hospital stays and specialists. Our Miguelangel was special from the day he was concieved. We lost our previous baby, born only 7 months previous to Miguel's conception at only 6 months along in my pregnancy. I had severe pre-eclampsia, and Eva was taken by emergency c-section. She passed away 6 days later, after suffering a hemmorage and blood clot that traveled to her heart. Broken and not sure if we should try again, the news of my pregnancy was a huge joy, as well as an immense fear. I had just lost a baby, I swore this pregnancy would be perfect. After finding out we were having a son, after having three other daughters, I was even more determinded that my pregnancy would go to term. I followed all doctors orders, took my baby asprin and blood pressure pills, ate healthy, got plenty of bed rest. At 7 months along Miguel was determined to be on the smaller side. Fear struck again as we were watched closely up until the 38th week when he was delivered, all 5 pounds of him, via c-section. Miguel was a happy, calm baby, but didn't gain weight easily, even though he was breastfed, just like my previous three daughters, two of which were twins. I knew what I was doing in the breastfeeding department, and he was getting plenty, having plenty of wet diapers, nursing frequently and for a good amount of time, satisfied..why would he not gain weight? We were finally told to supplement him at 6 months with formula, something I hated to do but seeing that his cheeckbones were becoming prominent, even after starting solids, we agreed.

    Miguel started to gain weight, slowly, but steadily, and all was forgotten as he becaome an active, smiling, gorgeous little toddler. We found out I was pregnant again when he was 12 months old. I was a little discouraged, as we were not looking to have another baby so soon, but knowting my fertility history, I wasn't surprised that I was pregnant again so easily. All was well with my pregnancy and Miguel until one day in November, when he was 17 months old, he came down with a high fever and was lethargic after a day of the park and lunch out. Thinking it was a virus, I watched over him that night, giving him baby Tylenol to subside the fever, finally deciding the next morning to take him into the Pediatrician as his fever went alarmingly high to 104.8. Upon examination, the Pediatrician descovered a hernia in his scrotum, large, protruding, possibly dangerous. She packed us up and sent us to the local ER, where he was seen by a Specialist and scheduled for outpatient surgery to repair his hernia. We were also told he had come down with a virus, just watch his fluid intake, and give Tylenol as needed.

    Surgery for his repair was tricky, as leading up he still had a low grade fever, that spiked after surgery to 103, and antibiotics were called in, thinking he may be fighting an infection. Days passed, and Miguel seemed to be recovering from whatever virus he had gotten, when one morning he woke, his left eye almost swollen shut like something has stung him. Alarmed to notice his fever was also back, I took him to the Peditrician's walk in immediately. He was diagnosed with Periorbital Cellulitus and sent home with a script of antibiotics, again explaning that was where the fever was coming from. 3 days later again his fever returned, this time accompained by a bout of shrill screaming and holding his stomach. We went to the ER yet again, were we were again told after blood tests he just had a virus, probably caught from exposure to something in the hospital, to go home and treat with Tylenol.

    We watch helplessly as over the course of the next month, Miguel's fevers went from every few days to every day. Spiking sometimes to 105. We were hospitilized as they tried to figure out what was wrong. His white blood count was fine, everything looked good on the blood pannel. Up to date on shots, no exposure to any rare diseases. Infectious Disease was brough in to help solve the mystery, and we were sent to DUKE Children's hospital about an hour from us to a Gastrointerologist, as Miguel was in a large amount of pain from his stomach. Weeks flew by as we were hospitilized again with Miguel, this time in DUKE. I was weeks from delivering our new baby daughter. We were released when they couldn't find anything wrong, and his fevers subsided finally. I gave birth to his baby sister Violet, as he stayed with my brother in law, no fever, no complaints. I was relived and anxious to get home to show him his baby sister. That first night home with Violet, Miguel again spiked a fever to 105 and woke up screaming in pain. My brother in law and husband drove him to the ER yet again, while I stayed behind with the new baby. A week later we were back and Duke, this time hospitilized for a month as all departments did work ups to see what was wrong with Miguel. Finally the answer, the day our daughter Eva was born, our beatiful angel that passed, we got our answer: Leukemia

    Cancer has devestated our family. Miguel's older sisters, in high school and middle school had a very tough time coming to terms with his cancer. They were also seperated from their baby sister for a month after she was born as we were inpatient at Duke for a month for treatment. Again breastfeeding I couldn't leave her, and couldn't leave my son, so we crammed into the tiny room, me my husband, baby Violet and Miguel, and watch as his treatment was done.

    A lot of challenges have arisen from cancer. I would have never described our Miguel as a special needs child. He never hit his milestones right on time, but that happened right? Now looking back, I realize the CANCER was what made him Special needs. He is delayed in speech by about 2 years, has atrophy to his muscle groups, shakes with fatigue when doing small tasks like holding a crayon, or twisting a cap on a bottle. His cells are being annihalated every chemo he gets, so his cognative functioning is suffering. There are possible long term side affects from the chem he will have for the rest of his life. To see him, he has the functioning of around a 2 1/2 to 3 year old, well behind his peers. But one look at his long lashed, big brown eyes, and the long curls we kept after his hair fell out the first time, and you are so charmed by him. He doesn't need words at all to wrap you around his little finger!

    He gets therapty through our local school system, but will not enter Kindergarten on time. He will probably go to school with Violet, the same time. Violet who was not planned turned out to be the best thing God has ever given us. She was brought her for her brother, because no mater how hard the treatment, how sick he is, or tired, a smile always lights up his face when she comes in the room. She is his best buddy, biggest cheerleader and I'm so blessed she is here for him.

    There are other needs I'm sure that will come up over the course of his life after treatment, but I'm so proud of Miguel! He has developed both Spanish and English as we are a bi-lingual household, taken an interest in sports, though he tires easily, and has a passion for music and dance. Though he isn't a "traditional' Special Needs child, he is still Special Needs due to what the chemo has done to him. But I feel blessed to have such great doctors on board, wonderful kids to help me with him on a daily basis, and an answer finally to what was going on with him. Special needs isn't what I would describe him. Special works alone just fine!

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