Thursday, December 17, 2009

It's the most wonderful time of the year!

Hello all. I hope my Christmas card made it to your home safely. We have been packing in the festivities this month...maybe over packing. The holiday season has us trying to just keep up and make it to those glorious two weeks off! Jacob has been inundated with Wells Fargo events. Last month is was whale watching and hitting up the casinos...this month was ice skating, a boat cruise at Newport, and he is currently still at a Ho' Down, country style gathering. Must be nice.

Allison's first tooth just poked through yesterday...there was a LOT of drool. I'd have to change her clothes several times a day to get her out of her wet clothes. She is crawling with ease and just started cruising. She is progressing too fast for my comfort. I can't keep up with her determination to do what her brother does. She is perfect angel. I can't believe God blessed me with perfection twice (three times if you count Jake). Andrew can be very sweet to his sister...but is has this word 'mine' stuck in his vocabulary and we a quickly teaching him how to share.

This month we have gone to look at the lights, visited the Mission Inn (which is gorgeous during the holidays), visited Disneyland to see the Holiday parade, gotten Swine Flu shots and flu shots, dealt with Andrew bad ear infection and lymphnodetitis, and made cookies with Grandma Brewer. We pick up Grandpa and Grandma Gillette from the airport this Saturday and then we are off to Bakersfield for a few days. If you are exhausted reading this, imagine how exhausted I am experiencing it. Although, I am go grateful for each and every memory...except for the shots and infections.

Health news:
I got the results from my capsule endoscopy today...they came back NORMAL!!!!! There is some great news. This means that I do not appear to have Crohn's disease and there are no ulcers. This also means I get a break from the doctor's office for awhile. I will go in for normal checkups with my liver doctor, but I continue to feel good. The itching is gaining momentum...but I am willing that away. Lotion companies do not have to worry about going out of business...I am a loyal user. The ulcertive colitis is being somewhat maintained...I am learning what foods work well and quickly learning what foods are a 'no no'. In the process, I have lost 5 pounds. There is a silver lining once again!

**If there are spelling and grammar errors...sorry...I'm to pooped to proofread tonight. Take care. I love you all. Thanks again for your prayers!

Thursday, October 29, 2009

Buzy buzy buzy

It turns out October is a very busy month. I have so many great photos to put up and stories to tell...I can't hold off any longer! We spent one weekend going to the Southern California Fair. This was a great opportunity for Andrew to ride a pony, feed some farm animals, and enjoy the sprint car races. He loved it all! The look on his face that entire day was priceless. Allison enjoyed it as much as she could...up until the races really got going, then it was just too loud for her baby ears.

Then grandma Cindy came into town for a week. The fun filled week included a trip to a pumpkin patch in Temecula (right in the heart of the grape orchards), lots of shopping, and a trip to the beach. Andrew really got used to Grandma G's attention...he had a hard time adjusting when she went back home to Texas. Jake and I really got use to Grandma's willingness to feed and change diapers. We had a hard time adjusting when she left too. We are looking forward to Christmas time, when we will get our next visit.
Andrew is holding the pumpkin he chose in the corn maze. Grandma Cindy getting a little too close...

Then our family met up for our annual picnic at Oak Glen. Grandma Brewer made sandwiches for us and we got to sit back and enjoy the crisp, cool air of the fall season. We also visited the petting zoo, the pumpkins, and saw how apple cider is made. We finished it off with a horse drawn carriage ride through the apple orchards where we got the history of the land.

Another blog is soon to come...Halloween is right around the corner. We have lots of activities planned. Andrew is going as a cowboy and Allie will be a ballerina...I can't wait to show off my babies pictures, they are going to be so darn cute!!!

Medical Update: I had x-rays done on my small intestines last week. My doctor is looking for Crohn's disease. I had to drink the nastiest white, thick, liquid/solid, so that the technicians could get clear images of my small intestines. The doctor called me yesterday to report that the x-rays came back fairly good. Yes! The word 'good' was used! He said the x-rays can't pick up on ulcers, so the camera capsule has been ordered and I am going in for that on November 5. So I'm not in 'the clear' quite yet, but I feel really good lately. I think the medication is finally taking care of the ridiculous itching, and I am sleeping through the night. The fatigue even seems to be under control. I am getting away with no naps lately. I am still exercising with my wonderful group of moms (Stroller Strides), and every organ seems to be working well, and doing it's job. I LOVE feeling healthy and whole. Thank you for the prayers and good wishes...I think they are working.

Saturday, October 10, 2009

Autumn is here!

The liver walk was a huge success! We raised over $1,800. That is way more than I thought we could raise. Lots of my mommies from Stroller Strides came out with their families. Matt came out with his family and the Gonzalez family, and some other friends from church. I do think we were the largest group. I was so honored and giddy that everyone came out to support me. I met 4 other PSCers at the walk. The Yahoo PSC group made the LA walk their meeting grounds this year...did I luck out or what?! It was so incredible to meet other PSCers.

Onto family news: Jake and I are doing fantastic. We are incredibly busy every weekend, but we find time to sit and relax occasionally. Our biggest worry this month is termites...we have them. Gosh darn! Today we are taking Allie and Andrew to go see monster trucks at the fair. Andrew should really enjoy seeing big 'frucks'. Andrew is really building his vocabulary beyond 'no'. His favorite phrase 'mommy...outside...pease'. He is an outdoors kind of boy. Grandpa Brewer gives him a New York mint every Sunday which Andrew calls 'num num'. He does a dance while he eats his mint. It's pretty cute. We tried to do family photos at the park last Sunday. I have nearly 20 photos of Andrew picking his nose or making an awful face at the camera. I produced 30 photos of my own looking down or winking (involuntary spasm). Jake was the only 'constant' according to the photographer. We will try again tomorrow. Please know how much work went into that photo when you get your Christmas card. Allie is super cute as always. She is cooing up a storm and drooling all over the place. The teeth are on their way. We started her on cereal, which she hates. I can't blame her, it tastes like crap. I continue to encourage her though. I am letting her know that fruits are just a month away...right after we introduce vegetables.

Medical news: So the results from the colonoscopy showed I have ulcertive colitis. The doctor ran blood work to see if I also have Crohn's disease, since there was some inflammation in my small intestines as well. The blood work came back positive for both diseases, but not with strong enough numbers to indicate a clear diagnosis. So....I will go in next week to get x rays taken of my small intestines, and then I will get the camera capsule! The camera capsule is a tiny camera in the form of a pill that you swallow and it takes 10,000 photos of my 'innards'. That should give the doctor a good look at my small intestines. My liver function tests have leveled off. They don't seem to be decreasing any more. I'm still about double the normal amount for AST and ALP....but that is better than 10x the normal amount. Most importantly, I feel good!

Thursday, September 24, 2009

September Craze

So September has been a busy month. Allison was baptized on Sept. 12. She was perfect, didn't even cry a little. When he poured water on her head, she smiled. Come on! That is one fabulous kid. We also celebrated Andrew's birthday that Saturday while we had the family over. Andrew got his first scooter, helmet and pads. Oh goodness. I have never seen a cuter kid decked out in protective gear. He is a very cautious rider. Jacob is doing well. He seems content with his job, this week. He likes to move up, fast. Yesterday he went whale watching with his co-workers. I don't know what he is complaing about.

We held our huge yard sale on Sept. 19. So many families donated their 'junk' to the sale. We spent most of Friday sorting through clothes and goods. I think at one point we had more stuff than the Goodwill down the street. I am so thankful and grateful that so many families were willing to give. Great news!!! We raised $1,069 from the yard sale. Talk about a successful yard sale! And we still had to take 3 truck loads to Goodwill afterwards...we donated all of the women's clothing to an abuse shelter for women. And this Saturday is the Los Angeles Liver Walk. My team is called Strollin' for a Cure. My Stroller Strides mamas and some other dear family and friends are walking with me in Santa Monica. The love and support takes my breath away. That is the best way I can describe it. I just don't know what to say. In such a crazy time in my life, I feel so loved. For the Liver Foundation we raised an additional $1, of right now. We still have 3 more days. Woo HOO!!!!

My medical news: Last month I was diagnosed with PSC, a rare liver disease. This month I was diagnosed with Ulcertive Colitis...inflamation of the colon. Another chronic disease. Yuck. I'm now taking 8 pills a day (some would laugh at this number because it seems so minimal....keep in mind, I'm only 28 stinkin' years old...I still say I'm too young for this!!!) To get this lovely diagnosis, I had my very first colonoscopy! Nothing is sacred anymore. And I do believe I will get this procedure every year now. The doctor took biopsies for cancer...they all came back negative!!!! There is always a silver lining. I am grateful and joyous. I'll have a pow wow with the doctor in November. Hopefully all will settle down. No more tests or procedures for awhile...I hope. I'll try to write more in a few weeks. Until then I'm going to try to figure out how to post pictures.

Wednesday, August 19, 2009

What's Goin' On

Hello family and friends!!! A blog solution was offered to me by my dear friend Allison. It would be a great way to keep people updated with news and photos. So here we are...a brand new blogger is born. I'd also like this blog to serve as means for medical updates for members of the PSC community, family, and friends.

So here's what's goin' on this month:

Allison turned 3 1/2 months. She is smiling and cooing away. Andrew likes to show off his cooing skills now as well. She is developing curly hair and still has those bright blue eyes. Andrew is getting sassy with his constant 'NO'. His vocabulary is developing beyond 'no'. We are working on farm animals and their sounds right now. He likes to repeat back what we say. During church, this past week, when doing the sign of the cross, Andrew said 'In the name of my daddy, the son, and the holy spirit, Amen' was super cute. Oh, and he can do the motions of the sign of the cross! Go Andrew!! This month he had a field trip to the local Home Depot where we worked on a planter box project. He got a mini apron, he loves to wear it and carry is Handy Manny tool box.

Jacob and I are good. We are looking forward to some camping trips in the upcoming month. Our weekends are being consumed by toddler birthday parties...they seem to be never ending. I finally finished my Master's degree in Education in June!!! This has taken me a year and a half, I am super excited to finally be done. One day, I get a job again in teaching and make that Masters worth all the effort.

My health: This month I was diagnosed with PSC (primary sclerosing cholangitis). I complained of itching during my pregnancy and after it as well. The doctors thought it was cholestasis during the pregnancy, but when it didn't go away after Allie was born (as it should have), they put me into further testing. I've had blood work done weekly, an ultra sound, which lead to the MRI, which lead to the ERCP, which lead to the liver biopsy, a sequential ERCP (to remove the stint), and will lead to a colonoscopy next month. The first ERCP triggered pancreatitis and a nice 3 day hospital stay (we just got the bill...ouch!) The news was quite shocking for my family and me. All the information I read on line seemed like I was just given my death sentence. Luckily, I'm smarter than that to believe in all of the negative. I cried on and off for three days and then I decided to get over it and organize a team to join in the Liver Walk taking place Sept. 26 in Santa Monica. My Stroller Strides group is going to walk with me and we already reached our fundraising goal. The support and love is astounding! We are also going to have a fundraising yard sale to raise funds for PSC Partners. Those funds will go directly towards finding a cure for PSC...which currently has no cure. As you can tell, this month was quite uneventful. I can wait to get back to the 'norm'. So, that is it for this month. I will write again next month, after the colonoscopy so I can tell you how fun it was!