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Shadee was born on Dec24th at 750am. He was not breathing and was being resusitated as I watched and cried. He finally began to breath but was wraped up and immediately sent to the nursery. I was told he had some deformities and the doctor would come and speak with me. My husband had explained that his knees were backwards and his feet were bent. I cried myself to sleep. At 1pm I finally got to go to the nursery to see him. I had lost alot of blood and had 3rd and 4th degree lacerations, so in the wheelchair I went. My husband wheeled me up to his crib under the warming lights he was naked and had a oxygen hood over his head. His hands were folded up against his wrist and his curved feet looked like kidney beans that were lying under his armpits. I burst into tears, not knowing what was to be his future. Later in the day, an orthopaedic dr came and explained that his hips and knees were dislocated and he had severe club feet. He referred us to the childrens hosp nearby. Anxiously awaiting for monday to call and make a appointment with the orthopaedic surgeon, we took Shadee home (wrapped tightly in a blanket so no one could see) to all my family for christmas. This was our gift to share. Shadee's sister, Maegan, was excited to play with him. She being 6 could not wait to be a big sis. Our first appt with the ortho surgeon was on Jan 6 the earliest appt availible. He confirmed Shadee had dislocated hips and knees, as well as club feet that were not manageable with cast. He would have to operate on his feet. I explained that his elbows looked funny and did not fully extend. Xray confirmed left one was dislocated. So his first task was surgery on his knees to put back in place and lengthen his quads and do a heel cord release which would loosen his feet but he knew it would not be much. This was scheduled at 1 month. 2 days before he had a high temp, would not eat, and very aggitated. His peditrician thought he sould be hospitalized to do cultures and start iv antibiotics. Ear infection. So at 2 months he had the first surgery. Brought him home in cast up to his thighs. During all this time he breathed noisy especially after he ate. Shadee was sick alot so we visited his peditrician often. He thought he had asthma and started him on albuterol nebs. Referred us to pulmonologist, we did a barium swallow which showed severe reflux and laryngomalicia He started on Propulsid and Previcid after an EKG. At 4 mon ortho dr looked at his hips and elbow under anesthesia and casted is left elbow. We went home with a brace for his hips to keep his legs spead so his hips would be stable. At 6 mon, he had a club foot release with pins to hold it in place. He came home with a cast from his chest to his toes. This was a nightmare, me being a nurse and trying to keep it clean and it was so heavy. He was completely miserable. This was taken off after 3 weeks and long leg casting was applied every 3 weeks until he was 10 mon. When they thought he would start to walk. Well he never did. So casting again off and on for the next 2 mon. Finally we got braces to keep his feet aligned. During all this, he still had reflux and was vomiting at least 2 to 3 times a week. When he had a cold, every time he ate. Dehydration, pneumonia = hospital stay. Ortho dr referred us to neurology because he was not trying to walk, sit or holding his head very well. This was normal and he thought he may have a muscle myopathy. Began physical therapy once a week which he still attends. In Feb 2000 I asked ortho dr about his head. Xrays= cervical kyphosis (dislocation of c2 and c3) but was ok. His knees seemed unstable through pt. So he was put in a long brace that extended to the thighs. He thought that Shadee was missing some ligaments in his knee but wasnot sure. Shadee was still not gaining weight, so in May we saw GI and nutritionist. He was 29 in and 20 lbs. Remained haveing problems with vomiting and him not wanting to eat. In June we had a endoscopy, gastric empting study and ph probe. All were abnormal except the endoscopy which meant he was well managed with his meds. This year we have only been in the hospital 3 times(whew!) with pneumonia and dehydration.
He now can stand with his braces for about 15 min and sits for about 30 min. His head control is slowly improving. We are scheduled to go to Shriners for evaluation in Jan and the pulmonologist in Jan for a bronch to see if there is any damage to his lungs from the reflux. He has positional scoliosis. His knees remain instable. His muscle strength is slowing improving. He loves to play with his cars, trucks, trains and airplanes. He talks very good for his age. His means of transportation is rolling and is begining to scoot on his back. He has never crawled or pull to a sitting or standing position, he is not strong enough yet. To have been through so much he is a very happy little boy!! We could not have been happier with another child, which by the way he has a little brother now born in Aug 2000. He is unaffected (Thank God), but Shadee loves him very much. He loves to give him his pasifier and pat him on the back.
If anyone has any questions about Shadee or Larsens syndrome please dont hesitate to email us at fishersantee@aol.com
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