The entire Brown clan headed to Boston Thursday morning, with a really packed car! We arrived at Children's Hospital just in time (or were we 15 minutes late??) for Camden's clinic appointment. We met with the surgeons, NP, dietitian, social worker, and by 5:30 ready to head over to our reservations at Hotel Hanson. A few changes in Camden's medications too. The docs stopped his Protonix, decreased his Reglan to three times a day, and after checking bloodwork, they stopped his Actigal too. The way we handle Camden's tube feedings changed too. Camden had a daily goal of 35 ounces of formula. What ever he does not consume by bedtime, is given via G tube over night. So, if Camden eats all 35 ounces, he does not need to be hooked up to any tube feeding at night! Right now he eats anywhere from 29 to 32 ounces a day. Not bad!! We were still unable to get his central line pulled on this trip, so we will have to wait until May 9th, as long as Camden gets rid of his cough completely!
Hotel Hanson's was great! We were able to visit with Andy's sisters Nancy and Flo, and friends Erica and Josh. We also visited with Nancy and Flo's birds Kiki and Zazoo.Friday, Andy went to Worcester for a surveying convention, thanks to his sister Nancy driving him there. Maddie, Camden and I just hung out at the house and rested, and played. That evening Marjorie, her best friend Rachel, and I went to the theater in Jamaica Plain. We saw Singing in the Rain and it was wonderful!! I rarely get to see live theater, what a treat!
Saturday, Maddie and I met Andy at Lars Anderson Park in the afternoon, (after his conference) and flew kites! The wind was perfect, Maddie and I got a little cold so we only stayed an hour or so. Saturday was also Passover and first Sader was held at Hotel Hanson's. That was a very nice experience. Maddie even found a new friend to play with, a little red haired girl, Shira.
Sunday, Nancy, Flo, Andy, myself, and the kids went to the aquarium! Maddie loved all the kinds of fish, although she got frightened each time the big fish swam really close to her as she sat in the windows looking in the big tank! We watched the seals out front of the doors play and Camden even liked to see EVERYTHING! He was so mesmerized, he ate 8 ounces of food and fell asleep in the baby carrier I was wearing for over an hour! We then ate lunch at Legal Seafood. Nancy and Flo left to visit Flo's mother, and Andy and I walked with the kids down some of the piers and watched to boats, and all the spring flowers that were out and in full bloom!
Today we headed for home, and our good friend MIMI was waiting for us and helped us unpack and tuck Camden for the night. Whew!!
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No, we haven't fallen off the face of the earth, and we love you and read all about your adventures and how well Camden is doing!! Uncle Gene's schedule is crazy, and I'm working a few more hours a week, but we always send love and prayers your way and hope to make a trip to Veazie soon!!
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