Weekend NOT in Boston!

Camden and I went to my mom's last Saturday to spend the weekend. Maddie was already there, mom picked her up on Thursday. It was nice to have some time at Grammie's with the kids, although Andy had to work all weekend! We were sad he could not make it. Camden seemed to have a great time checking out all the new stuff at Grammie's, it took him most of the day to stop staring at walls, windows, and lights! Sunday afternoon all three of us packed into the car and headed home, where Andy was waiting for us in the driveway! Maddie sure did miss her daddy!!

Today, Andy picked up Maddie at daycare with Camden and went geocashing in Clifton for a few hours to give me a break. Well, I did have to look over my PALS materials for Wednesday, plant a few seeds to start seedlings, and run to Sam's for more ink, diapers, pull ups and wipes! It started to rain, so they headed home.

Tomorrow we are invited to a Maine Black Bear baseball game with the Third watch Hockey team (you know the ones who chased around the women's hockey team during the broom ball game, and some how won!!). They are presented the check from the broom ball game to us, and we will stay to watch the game, if the weather holds. I heard it is supposed to rain tomorrow, keep you posted!

Weekend at Boston!

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!!

Boston, here we come

Camden spent one night in the hospital after his bout with influenza, unless you count the long night in the ED, then we spent two nights! We got to his room about 4 in the morning, on the 5th, and we came home on Sunday the 6th, around 1 in the afternoon. He still has a cough which at times is very congested sounding, but no new fevers. We had a quick trip to the ED this week for retractions, no fever, and home that night. We then followed up with Dr Ross the next day and checked out OK. It is so hard to tell if the pains are his gums, or his ears! Poor little man!!

Tomorrow we all head to Boston for a clinic visit. We will be staying at Hotel Hanson, and Andy will try to get to Worcester for a surveying convention/conference over the weekend. I am hoping to get Maddie to the aquarium, and maybe back to the children's museum. She is also excited to return to Children's Hospital to visit with the nurses and Lakiesha. We are also looking forward to some time visiting with family and friends in and around Boston. Nancy and Flo will be coming up for the passover weekend also, and it will be great to visit with them. Who knows, maybe Andy and I can get away for a few hours, or I can get a nap?!! It will be the first trip back to Boston for Maddie since Camden was discharged from Children's!

My plan for Boston is to talk to the clinic about the need for a multivitamin, whether or not we still need his Actigal, and if we can plead for them to pull his central line now, rather than our scheduled date in early May. I am also hoping to start decreasing his feeds at night. But every time I plan on something at clinic, so much more always happens! We shall see what new things will occur this time!!

Nighttime routines are becoming longer and longer! Every night it takes over two hours to get both Camden and Maddie to sleep. They both seem to fight the natural process of falling asleep. Maddie often cries herself to sleep, and Camden often eats himself to sleep. He wakes up frequently for the first hour or so, and his routine has returned to normal (eating and sleeping). His gums are really bother him now and he would rather chew on his hand, blanket or toy, rather than go to sleep.

Camden has also started to eat cereal and baby bananas! He takes a few bites of each then won't eat another bite. Oh well, at least it is a start!! I was hoping the cereal would thicken up his poops, but maybe he needs to eat more than a few bites twice a day! He is drinking his Neocate well too. He slowed way down for a few days after his last hospitalization, but he is back up to 5 to 7 ounces every three hours or so. At night he will take up to 7 or 8 ounces over an hour to get to sleep. This is his nightcap!

Influenza at the Brown's

Camden was admitted to EMMC Friday night with a horrible cough, hoarsenes, and fever. Saturday we learned his Influenza swab was positive. He came home today, but still has the cough. He has not had a fever since Friday night, thankfully. While we were in the hospital, his G/J tube started leaking (and pouring!) anything that he took by mouth. Our pediatrician talked to the docs in Boston and it was decided to pull that tube and put in a G tube. It can be doen without xray, unlike the G/J tube, and we weren't using the j part of it anyway. It seems to be working well. It will take the better part of this week for Camden to get back up to 100%. This may have been what Maddie had last week, and we have all been coughing this past week too. As far as the source... I may have brought it home to the house, or Maddie could have picked it up at daycare. Who know's??
Maddie spent the weekend with aunt Alice, and had a great time playing with them and cousin Michelle!

Chunky Monkey!!

Camden hit the 16 pound mark at his weekly appointment with Dr Ross today!!. We also were told that were to return to the office only after his next Boston appointment! That is is two weeks! What will we do with our Thursday mornings now?? He is also really trying to get his first tooth. It feels like a bud on the top, so we shall see. His feeds are going so well. He can take up to 7 ounces or more then a few hours later take another 5 or 6 ounces! Tonight he took 7 ounces then ate another 2 ounces half an hour later trying to get to sleep.
Maddie finally made it back to school today. She has had a fever off and on since last Friday and the rule at daycare is no fever for 24 hours. She came home tuckered out and whinny! She only wanted to eat carrots, yogurt and a banana for supper. She then fought going to bed for almost an hour!