Christmas in France

We spent this Christmas with all of my family in France. My mom's 60th birthday is coming up in February and she wanted us to all take a vacation together. We talked her into Christmas somewhere fun. And oh, the place I found. We went to Alsace, France the self-proclaimed Christmas capitol of Europe.

It is truly a magical place. We rented a house in Riquewihr an walled city about 500 years old. 

However, the getting to the house was done in true Reynolds style.

We all (minus the Danley's) flew from JFK to Madrid, only to be told that we had a 3 hour delay. (There was a lot of snow in London and flights were being diverted to Paris.)

 

We knew the delay would cause us to miss our train to Strasbourg, so we called customer service, only to be told it was no problem. But when we got to the train station, we were told that we had to buy all new tickets. Plus the Danley's were nowhere in sight.

 Carter did get to ride his all time favorite train. The TGV (train a grande vitesse) is the fastest commuter train in the world. He had a train book when he was 2 that told all about it, and he would ask every day when we could go on the TGV. One dream come true!

We arrived in Strasbourg only to find that the rental car company was closed. We decided to take taxis to Riquewihr to the tune of $200 a piece. Still no Danleys....

The next morning they emailed that they had stayed in Strasbourg and all the men had to return by taxi to pick up the cars. While the rest of us got to explore our town. Pretty cute, huh?

 Day 2 took the boys to the Swiss Alps to go skiing.

 It took the rest of us to Strasbourg to enjoy the Christmas markets and the ambience.

 

Jason had my camera so our pics of Strasbourg are few and lame.

The next day we went to Colmar to do more of the same.

The next day was Christmas Eve and we drove to Obernai to do some last minute shopping for each other. We ate really good Alsatian food and it started to snow.

Keaton had his pal "Rosco" with him everywhere.

   
We did all kinds of Christmas preparations. The kids watched Christmas movies that Kari made for them. We went shopping for food and more gift wrap. We decorated men's tube socks for stockings and finished up decorating the house with a new nativity, colored paper snowflakes, rag garlands, and winter scenes the kids made. It was darling.
That evening before dinner we went out to do a little caroling in the town, only to find a brass octet and a men's choir taking turns entertaining the church goers. It was gently snowing and one of the most enchanting things I have ever experienced. We then walked around the snowy town singing to the delight of many a passerby.

We opened Christmas Eve jammies, hung our stockings and went to bed. Santa brought the kids lots of small toys and then we went out to walk in our little village.

 

 Keaton had a block of snow he wouldn't put down. We all had to take turns carrying it for him.

Merry Christmas to all our friends and Family.

It's All Greek To Me.

This year we were Greek gods for Halloween.
Jason- Hades
Alicia - Aphrodite
Carter- Posieden
Aidan- Zeus
Keaton-Eros (Cupid)

Bershires

We spent an idyllic weekend in the Berkshires in Western Massachusetts in September.
We drove up on Saturday and went directly to Stockbridge and visited the Norman Rockwell Museum. The kids loved the museum. It is a great one for kids as Norman Rockwell was a big kid himself. He really looked for humor in every situation and the kids laughed out loud at a lot of the displays. I highly recommend it!

The museum even encourages the kids to climb all over the different statues outside. (Created by one of  Norman Rockwell's sons.)

We drove around picturesque little towns for the rest of the afternoon went on a hike, and went to our hotel.

 

   
The next morning we headed to Hancock Shaker Village. It is the oldest continuously operating Shaker farms.It is in a beautiful little valley and has well preserved buildings throughout. We learned a lot about Shaker life and decided that it wasn't half bad.

The Shakers were very industrious. The gardens were huge, and they had a fair number of animals around

 

We must have been visiting past peak season, because the kids had the run of the place. They helped employees feed the livestock, did some weaving, rode in a horse-drawn buggy, chased an Australian Sheepdog, picked apples off the trees, and Keaton even watered the fields in the way that only little boys can.

   
Jason got to help the local beekeeper harvest some of his honey and was as starry-eyed as the little boys. Guess we are getting bees next spring!

Fun for my birthday!

For my 35th birthday, Jason took me to a Harvest Feast at Longwood Gardens. I had wanted to go, but he surprised me by inviting my parents and Aunt Kristie to join us. One of Lacey's friend babysat for the kids and we had a magical evening.
Appetizers and cocktails were served in the idea garden. We were able to eat and walk around the lovely autumn gardens.

Dinner was served at a long table and we enjoyed 4 courses at the table, followed by dessert and a fountain display in the center of the gardens.

Happy Father's Day

Longwood Gardens

 

 We met Mom and Dad in Philadelphia for Memorial Day weekend. (It's about halfway between us.)Although I've been to Philly many times, we did some really different things this time. Our favorite stop was at Longwood Gardens in the suburbs of Philadelphia. 

 

We spent almost 5 hours rambling around the various gardens and the conservatory. The kids really enjoyed the topiary garden, the Italian water garden, and the scented plants that were marked all through the garden. 

Jason was giddy over the vegetable gardens. I thought the perrenial gardens were the best. There were also woodland gardens, annual gardens, and rose gardens. 

We walked until our feet were bloody stumps and then rested and walked some more.

 

Happy Anniversary to me!

Today is my 1 year anniversary! I had pit surgery a year ago today at MDA and my numbers show that I am still cured. Last months am cortisol was 3.3 (6.2 - 19.4) and ACTH was 5.7 (7.2 - 63.3). I am currently on 15 mg and trying really hard to get down to 12.5 mg. I recently started Growth Hormone and am hoping that that will help me with some ongoing problems.

This year has been the hardest of my life. Most of you know I had a number of complications after surgery and spent a lot of time in various hospitals. I know that I am not necessarily the norm, but I want to share the good and the bad about this past year.

The Bad:
I have felt sick and exhausted for most of this year and for a good 6-8 months of it I was nauseated. I haven't been able to take care of my kids the way I would like to. My house has become a messy, messy place. I have only lost 5 pounds. I feel sickly a lot of the time. My muscles are still really weak. The brain fog is still present a lot of the time.

The Good:
However, I do feel like surgery was worthwhile. I find that my mental outlook is greatly improved. I haven't had a single panic attack since surgery. (I was having horrid ones almost every night.) I am less sweaty. I have a clear complexion. My hair isn't oily. My hump is gone. My stretch marks aren't red anymore. I can easily sleep through the night.

This cure isn't exactly what I thought it would be. Of course, in my imagination I saw myself recovering quickly and having all symptoms gone within 6 months. Well, this disease doesn't play fair! I keep believing that things will get better and better and that in the near future I will feel great. I'm hoping that a combination of more weaning and the GH will help me lose weight and feel less foggy.

I will say that I have learned a great deal about myself and learned how truly kind others can be. I am a stronger person than I knew, and I have an ability to be positive even in extreme situations. I have learned how to be patient. (I've had a lot of practice this year.) I've become assertive in getting what I know I need. I have become a mother less concerned in appearances and more concerned with making memories.
I've learned that people want to help you and are truly kind. 

I am a better person because of this past year...

Thank you to all of you who have helped me through this. lifeline to me. Recovery is physically and emotionally hard, and I could not have done this without so many of you.

Thanks for watching my children, cleaning my house, bringing me food, visiting me,sending me cards and email. It was all deeply appreciated.
Love to you all,
Alicia

Are you better yet?

I have had a number of people ask me if I'm "better yet?" The answer to the question is no, but I'm getting there. I think one of the hardest things to explain to people is how long this process is. I'm not just recovering from surgery, I'm also trying to balance every hormone in my body. For those of you who are interested in muddling through my horrible anatomical lessons read on....

I had a 10mm ACTH-producing adenoma in my pituitary gland. This tumor not only made my body make too much cortisol, it also damaged the pituitary surrounding it. I was lucky to have such a fabulous surgeon, and he removed only about 20-30% of my pituitary when the tumor was removed. This is important because the pituitary produces so many hormones and without at least 50% of it, it stops producing those hormones.

This is where it gets more interesting... One would assume that as soon as the tumor was removed, I would get better right away. However, there are two issues. First, my body is used to having high doses of cortisol after so many years of it, so when the tumor was removed I had to take high doses of cortisol (60 mg/day) and slowly wean week by week. I am now down to 17.5 mg/day and try to wean down 2.5 mg/day ever other week. Second, because the tumor was producing ACTH for so many years my pituitary gland stopped producing it--it went to sleep. Only with time and weaning will my pituitary wake up and start producing ACTH on its own.

Weaning is truly the worst. The 3rd through 5th days after decreasing seem to be the worst of the wean. I am freezing cold, nauseated, have piercing headaches, diarrhea, and can't seem to focus or find the words I need. I try to start my wean on a Thursday so that I have the worst of it over the weekend and can rest. Sometimes I can't tough it out and I have to go back up 2.5 mg/day for another week and then try again. Weaning from cortisol has been compared to weaning from heroin. Don't become a heroin addict!

Not only does the pituitary fall asleep and stop producing ACTH, but the trauma to it from the surgery causes it to not function as it should. I am now deficient in growth hormone, thyroid hormone, estrogen, and testosterone. Again, these hormones should come back with time. My thyroid levels are almost good after a few months on synthroid; I'm waiting out the estrogen and testosterone hoping they'll kick back in soon without drugs, and I am trying to get tested for growth hormone to see how much I need to take. (The wheels turn slowly in the medical field!) The effect of these other hormones going away is that I am fatigued, moody, and haven't lost any weight.

The lack of weight loss is concerning because it can mean one of two things: I need growth hormone or Cushing's is back. Growth hormone deficiencies mimic Cushing's weight gain and many people start to lose weight once they start the injections, so I am trying to not worry about it for now. I am currently confident that Cushing's is gone for the following reasons: my monthly blood draws show my morning cortisol numbers to be so low they aren't on the chart, being able to sleep through the night, no panic attacks, buffalo hump is gone, alien skin is gone, and stretch marks aren't red.

In the annoying Cushing's manner, I am in wait and see mode for a while.

So to the question "Are you better yet?": I am able to handle a lot more than I could months ago, I am back at work and able to run the kids around. I can make dinner most nights, and only nap a few times a week. I can read again and actually follow it. I went to a couple of fairs this fall and walked around and lasted all day. I am getting better and I can't wait to answer the question, "Are you better yet?" with a resounding yes.

Camping in the "Wilderness"

Jason decided he wanted to take the boys camping over Labor Day so we drove up to Massachusetts to drop me off at Aunt Kristie's for some girl time.

This being the very populated east coast, there are very few areas to camp that don't involve paying for a small patch of dirt next to 30 RVs and having electricity and running water at your site. Jason wanted to give the boys a "wilderness" experience, but there wasn't anything close, so he and Aunt Kristie hatched up a plan.

Kristie's house backs up to a conservation area in Concord and her own property goes back quite far into the forest, so Jason decided to camp in her backyard! He went out exploring the backyard and found a place on her property where they couldn't see the house at all and then he found a way they could "hike" in.

Kristie, Lacey, and I drove Jason and the boys around Acton and Concord for about 20 minutes and told them they were on the way to their camp area. We dropped them off at a trail head for the Concord Conservation area (about a mile from Kristie's house.) and dropped them off. They hiked in for about an hour and then "found" a great place to camp.
It was great because they could light a fire without a problem on private property, and the boys had no idea they weren't in the forest somewhere.