Bryson's Blog

Living with Trisomy 13

Wednesday, August 02, 2006

Update on Bryson

Bryson continues to do well. He continues to put on a few ounces here and there. There haven't been any apnea episodes of late and for that we are very thankful. Somehow things got messed up with the insurance, Hospice and the medical equipment provider and they had to come and take away all the medical equipment and turn around and have another company deliver the same stuff. They got nearly everything they needed but the oxy-hood and pulse oxymeter that Dana fought so hard to get. Now she's fighting again, this time with another company. She contacted the Children's Miracle Network and they have been very nice to help purchase an air conditioner for the apartment and now they've arranged for her to pick up an oxy-hood from Samaritan Hospital. (I explained in an earlier post the advantage of an oxy-hood over the "oxygen tent".) Any way, it is sometimes difficult dealing with so many people that you rely on for the needs of a special needs child, very frustrating. Some days Dana says she spends the entire day on the phone trying to co-ordinate appointments, for Bryson and herself, hospice, volunteer visits and trips to the doctors. Dana and Travis have both been sick themselves this past week. Travis had a flu and Dana has sinusitis. They are probably very tired and worn down as life with Trisomy 13 is very exhausting. It's a 24/7 job and I wish I could be there to help. Please keep them all in your prayers for health and endurance.


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