Matthew has not been doing the best in terms of his feeds. We have attempted to get more weight on him by increasing his feeds. He was getting his feeds and 58/hour and over a period of 5 weeks we slowly increased the rate to 61/hour. Unfortunately Matthew has lost a pound during this time. He is almost 9 years old and only 34 pounds. This is our 3rd time trying to get Matthew past this point and he has done the same thing each time.
Terry spoke to Matthew's GI doctor in Boston and he wants to put Matthew in the hospital to see if we can get some weight on him. He had us lower the rate back to 58/hour to see if Matthew can gain back the weight he lost. Matthew's doctor is going to try and think of some different ideas to help Matthew. A different formula, another supplement or possibly putting Matthew on TPN even for a short time. We are hoping to avoid a hospitalization but will do it if there are no other options.
Matthew is still without his Mito Cocktail as his insurance stopped paying for it. Terry is working on some things that may get it covered. We can't afford to pay for it ourselves as it costs $800.00 - $1000.00/month.
Matthew had his overnight sleep study done last week in Vermont. He didn't mind it at all and fell right to sleep. We should get the results this week.
Despite the current medical issues, Matthew is enjoying 4th grade. He likes seeing his friends and he loves his teachers. He also looks forward to weekend play dates with his friend Ava. They are super silly together. Last weekend, they spent the day together in Albany for a Starlight function at the Pottery Place.