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Apr 28-May 04

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Mark has done great with his rehab. The therapists are continually amazed. He finally got his trach pulled Friday! Now he’s having to get used to talking, eating and coughing without it. He will have a cough assist machine at home. Eating is still a bit of a struggle. But he’s gained 5 pounds. He’s averaging about a pound a week. I told him at that rate it will take him 4 more months to gain back to his original pre injury weight, which was too thin. Tomorrow TIRR will take him to a pediatric neurosurgeon to check his scoliosis. The first brace made for him doesn’t work because he’s asymmetrical. A true scoliosis brace is made from a casting of his trunk. Ugh. Not looking forward to what he has to say. Keep us in your prayers that he won’t need surgery. Prayers work so we appreciate them. We go home Friday. Still pray that this home time will go smoother than the first time home. No trach, no iinternal catheter and eating better. He also starts homebound  school after Labor Day. The doctor wrote a note for 6 weeks but we feel like he needs to wait to go back to public school after the holidays. We have to build up his weight because he is malnourished. It shows in his blood work. He has no immune system right now. He’d catch every bug there is to be had!  We are going to ask for more time. Thank you all!

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