Hello -
Michael and I went to MGH for the day on Monday May 4. We spent the morning with his immunologist and after a brief lunch (chocolate milk and an apple) we met with another specialist. The appointments went well. Michael has grown in height and weight. The weight gain was big, as last year at this time we were looking at an 8 pound loss.
Michael has been on IVIG or SUBQ treatments for a year and he has shown gains in living more "normally". The IgG replacement treatments have helped him stay a bit healthier.
The MGH day ended with blood work - Michael hates this! We found a new gift shop in Yawkey and Michael picked up some Cheetos. This took his attention away from the bool test for a bit. During the blood drawing Michael was less than happy, but the MGH staff was great with him. We will get the results soon. We will see if Michael needs a larger dose of IgG and/or more iron supplements.
Other than that we are getting ready for him to go to school next fall.
Take care and thanks for reading!
Anne
Thursday, May 7, 2009
Tuesday, April 28, 2009
Boston
April 28, 2009
We took the boys into Boston for their eye exams. Boston is getting a bad rep. for Mikey - all he thinks about are tests, doctors, and "blood" (anything with a tube attached). We decided to go ahead and act like a tourist for a brief moment. Charlie, Sean , Michael and I took a Duck Boat Tour. It was great. Sean soaked up all the facts and remembered many lessons from school. Michael commented the entire time on the people, our super-big boat, and anything he could think of. As soon as that was over we headed off to the doctor. Michael announced loudly he doesn't like this doctor - he remembers the eye drops! We managed through the events and after about 3 hours we were set to leave. One note: Michael has been complaining about his eyes feeling like sandpaper when he is thirsty. He has the same bumpy skin on his eyeballs and on the tissues around his eyes that he has on his knees and elbows...it's bumpy and dry! We have new eye drops for this. It will be interesting to see if any drops get into his eyes. Sean will get new glasses and we will see if Michael needs any in October. Next trip to Boston will be less tourist-y. We head in next Monday for a morning and afternoon appointment, after that off to Waltham for gastro..
We took the boys into Boston for their eye exams. Boston is getting a bad rep. for Mikey - all he thinks about are tests, doctors, and "blood" (anything with a tube attached). We decided to go ahead and act like a tourist for a brief moment. Charlie, Sean , Michael and I took a Duck Boat Tour. It was great. Sean soaked up all the facts and remembered many lessons from school. Michael commented the entire time on the people, our super-big boat, and anything he could think of. As soon as that was over we headed off to the doctor. Michael announced loudly he doesn't like this doctor - he remembers the eye drops! We managed through the events and after about 3 hours we were set to leave. One note: Michael has been complaining about his eyes feeling like sandpaper when he is thirsty. He has the same bumpy skin on his eyeballs and on the tissues around his eyes that he has on his knees and elbows...it's bumpy and dry! We have new eye drops for this. It will be interesting to see if any drops get into his eyes. Sean will get new glasses and we will see if Michael needs any in October. Next trip to Boston will be less tourist-y. We head in next Monday for a morning and afternoon appointment, after that off to Waltham for gastro..
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