A Long Two Weeks!

Sorry I haven't written in over a week, things have been crazy here!!

So, after Camden had his central line removed we spent the day resting at Hotel Hanson's. Saturday we met up with Ellie and her parents at Boston Garden and Common. The girls hit it off great and loved playing on the bronze duck statues in the garden. We then all hopped on a swan boat and went for a little ride in the pond. We even saw a real, live swan. Dinner was at Ellie's house and we all had a great time getting to know each other better.

Sunday, we had the opportunity to share a very happy moment with another short gut kid, Reena, who recently had her Mik-Key button out. There was a party for her at her grandparents house, and we were there to help her celebrate! There were button games, button crafts, and all the food was round! We then headed back to Maine.

The week was a long and tiring one. There was some sort of virus around the house. Camden didn't eat much, and stooled a lot! Maddie and I could not stop sneezing, and Andy was vomiting for two days. Camden then developed conjunctivitis! Needless to say, I am glad that week is over. This week has been much smoother. Every one is feeling better and sleeping more! I wasn't getting used to functioning on three or four hours of sleep each night, and was very emotional and cranky!!

Maddie, Camden, and I went to a birthday party last Saturday where Maddie learned how candlestick bowling! She is pretty good, until the 7 year olds took over the lanes after cake! She still had a good time and really enjoyed the cake!

Camden's steri strip came off last Sunday and Monday night he had his first bath in the baby tub!! He loved it! He was amazed by the water, and loved feeling it flow down over his body. He didn't even mind it on his head or face! Maddie had to be right there of course and help out! So things are getting back to a more normal pace. In fact this morning, Hallie, our black lab came home from our friend's house! She lapped Camden and Maddie! This was the first time Hallie has met Camden.

I think I have caught everyone up. This weekend we have plans to plant the garden. I am working Saturday, so it will be on Sunday. Camden's home health benefits expire on Saturday but I have been assured by the home health agency that they will still be her for us. We may loose some hours if we have to bill through MaineCare but they are still planning to be a part of our lives! Yeah!

Central Line is History

This morning Andy and I packed Camden up and was at Children's Hospital by 6 am. Camden spent about 45 minutes in pre-op. the OR nurse carried him into the OR by 7:40 and by 8:05 Dr Jaskic came out to tell us the IV in his chest was removed without any complications. He slept off the anesthesia until 9:15 and drank some sugar water. Then we were on our way. We stopped up 10 East first thing this morning and again after the procedure to fill in the nurses. They were amazed at how big he has grown!! He weighed 8kg in pre-op.
We were back to Hotel Hanson's by 10:30 and Camden and I napped for a while. Maddie went with Marjorie and Mark to pick out snails and tadpoles for their pond. She had a great time this morning. This afternoon, she and Andy took the T into the city for some exploring. Camden took another nap after finishing off 5 ounces of formula. So now it is a day of rest and relaxation, for the Browns.

Family Trip to Boston

Tomorrow, we are packing up the kids and heading to Boston, again. This time it is for something more than just a clinic visit, Camden is having his central line removed Friday morning! It is a mixed bag of emotions. on one hand it is great and exciting that Camden is doing well enough that he no longer needs it, or the risks of having it in. On the other hand, should he need anything in the future as far as bloodwork, or IV fluids should he get sick, it means an IV stick. But it means he he getting closer to being a normal baby.
Maddie is all excited about going to Boston again, and staying at Hotel Hanson is so much fun for her! We are making a weekend of it, and going to a button out party for another short gut girl... Way to go Reena!!
We will keep everyone updated on how he does and how the weekend in general goes when we get back Sunday night.

Road Trip!

Today was road trip day. Maddie, Camden and I packed up the car and headed to Stockton Springs to see my grandparents. They are snowbirds in Florida in the winter, so this was the first time seeing them since they left in November. They were surprized how chunky Camden is and how tall and grown up Maddie is. (It is true!!). After lunch we headed on the road again, this time to Athens, to see my dad. It was the first time in months he has seen the kids, due to our schedules clashing! He has been trapping in downeast and northern Maine for the last two months, and you all know how crazy our lives are!
It was so nice to catch up with them, and now I am much more confident traveling with them both by myself. Maddie was very well behaved today which helped too. So after last weekend at mom's and today's road trip, I expect I will be traveling to see more family with the two of them soon. Maybe even to Bowerbank??
Another busy week again coming up, and as always, Chuck and Mimi are planning to be huge helping hands with Camden's care!

A little diddy about Chuck and Mimi!

Let me tell you about the two people that have drastically made our lives better since we were discharged from Children's Hospital back in January. Chuck and Mimi were retiring from the nursing field when we called them to see if they would be interested in becoming Camden's home nurses. They were just getting done at EMMC and were looking for a drastic change. We provided that, and they provided so much more.

Chuck and Mimi have been Camden's home nurses 95% of the time. They are calm, knowledgeable, and so caring! They talk to Camden all day, read books to him, take him for walks, and give him so much love! They are there for him when Andy or I are at work, need a nap or need to run errands. They have become a great part of our family.

They have also made it possible for Andy and I to start a garden, start composting, and get some little things done around the house that desperately needed to get done. They will jump in do dishes, laundry, or pick up toys without anyone asking them.

Camden responds to both of them so well, separation anxiety has not started to happen yet when we leave. They are so flexible with their schedules, even though our schedules are hectic and crazy! They are awesome!

Yet, I feel guilty about not being there for him, and not taking him on those walks. Sounds crazy, I know, but a part of me still feels guilty for getting Maddie into daycare, and that was a wonderful decision for both her and us!

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!!