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By Lana, December 20, 2008 10:35 pm

I thought about dazzling you with descriptions of our hiking adventure in the Alps, our remote beach vacation to Brazil, pictures of our new McMansion, Dave’s three new sports cars, my plastic surgery successes, and our girls’ beauty pageant trophies and school awards (definitely Ivy League material!). But, I decided to leave all of that out and just give you a quick review of our 2008! Ha, ha!

January- Carmen got her feeding tube. We celebrated one year home with Carmen!

Feburary- Dave, Carmen and I went to our church’s annual Valentines Day banquet. Carmen also went to a whole bunch of doctor visits this month.

March- We went to the Annual Tay Sachs Family Conference in Tampa, Fl. This was a highlight of our year — spending a weekend with families who understand everything. And meeting precious children who are so very loved. After the conference, we spent one day at Disney World!

April- Carmen was hospitalized with RSV. Later in the month she was again hospitalized with breathing problems.

May- We became debt-free! We started Hospice services for Carmen.

June- This was our month of adventures. We got stuck in the mall during a tornado and Lauren swallowed a marble. We went to a picnic and literally got drenched 5 minutes after arriving. Even our hotdogs were soaked through!

July- Lauren spent two weeks with her NY grandparents. Carmen turned two. 160 people came to Carmen’s birthday party, including my mom and two of my brothers as well as Dave’s parents, grandmother and aunt. (My MOPS group hosted Carmen’s party.)

August- Dave and I celebrated our 10 year wedding anniversary! Good friends watched Carmen so we could go to New York City for a night.

September- Lauren got glasses! And started 4 year old preschool.

October- Dave turned 34.

November- Lana turned 33.

December- Lauren turned 5.

Well, there you go. I bet most of you had a more interesting and exciting year! Ours was filled with real moments. Ups and downs. Laughs and good cries. I wonder what 2009 has in store for us.

Merry Christmas!!!

Love, Dave, Lana, Lauren and Carmen

P.S. While I was typing this, I heard sirens. They kept getting louder and louder. I looked out our front window and 5 fire trucks and an entourage of emergency vehicles drove through our neighborhood. I looked all around for the blazing fire. Nope, its Santa. On the back of a fire engine. Waving. It’s been 30 minutes and I can still hear them making their way through the town. We live in a weird country. I can’t stop laughing!

P.S.S. Happy 29th month birthday to Carmen! We love you lots and are so very glad you are here with us! And also, happy 34th birthday to Uncle Tony today.

Lauren’s gingerbread house, a birthday present from two good friends

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By Dave ©, December 19, 2008 9:37 am

“You can easily judge the character of a man by how he treats those who can do nothing for him.”

-Johann Wolfgang von Goethe, German poet, novelist, playwright, scientist and philosopher (1749-1832)

This quote both inspires me (something to shoot for, a goal to try to achieve) and convicts me (man, do I have a long way to go!).

Do you have any great quotes about character?

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By Lana, December 17, 2008 11:07 pm

Carmen update: Carmen’s pediatrician called with the lab work results today and everything looks good. No kidney problems. We are not sure why she was retaining fluids. She is less swollen now so that is good. Tomorrow she is starting a new antibiotic to hopefully get rid of the C-diff.

We are all feeling much better today. Lauren went to school and to a tea party (thank you Unjoo and Tatiana for taking her!).

Carmen got an early Christmas present. A SuperSac by LoveSac. We wanted somewhere for her to rest that would be comfortable. LoveSac had an almost 50% off sale on their SuperSacs on Black Friday. Don’t worry, I didn’t stand in line at 4am to get it! I ordered it online with free shipping! www.lovesac.com

The SuperSac is way too big for our living room. It looks ridiculous. But, Carmen is very comfortable and that is what matters!

LoveSacs are bean bags filled with shredded memory foam. The SuperSac is 6 ft. in diameter. We all love sitting in the SuperSac!

Here is a picture of Carmen in the insanely big bean bag!

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By Dave ©, December 16, 2008 10:30 pm

I took Carmen to the lab yesterday to return a urine sample and have some blood work done. We arrived at the lab at 4 PM, allowing plenty of time before lab closing at 5 PM. After a brief wait in the lobby, we were taken to the exam room in the back.

The lab technician came in and, after brief small talk, began looking for a vein in Carmen’s arms. I wished him, “Good luck!”. Carmen has always been a bit chunky so finding veins has been challenging in the past. As she seems to be retaining fluids (the purpose of our visit), it would seem to be that much more difficult to find a vein this time.

After about 10 minutes, he called in another tech to help. The 2nd tech looked for about 5 minutes and thought he found a vein in her left arm but wasn’t sure. “She’s cold. Let’s try to warm her up for a few minutes and then look again.” So they put warming pads on Carmen’s arms and hands.

About 5 minutes later, the two technicians returned and began looking for veins once more. By this time, a third tech joined them. All three of them took turns with Carmen’s arms. None of them found a vein.

A few minutes later, a fourth person joined us in our ever-shrinking exam room. She took one look at Carmen and then turned to me. “She looks a lot like my daughter. What’s wrong with her?”

“She has a disease called Tay Sachs,” I told her. “It’s a genetic, degenerative, neurological disease. It slowly shuts everything down.”

“Is she going to be OK?” she asked.

“No.” (Now, I’ve replayed this in my head a hundred times since and thought of at least a thousand different things I could have or should have said that would have been more hopeful. But in that moment, “No” was all that came out.)

Immediately, tears welled up in her eyes as she turned slowly and walked out of the room. She returned a few minutes later, her eyes clearly red and her nose still sniffling a bit.

…

I often forget that what is now normal for us is still very raw and almost unbelievable to others we encounter.

Believe it or not, it’s actually nice when people react with heartfelt sorrow, not because I want people to feel sorry for Carmen or us, but because it reminds me that this is emotional. It’s easy to become calloused to what’s going on. It’s nice to feel pain every now and again. It is a gentle reminder that I am still alive and that I still care about Carmen!

I love you Carmen!

…

PS. You’ll be happy to know that they did eventually find a vein in Carmen’s hand and at around 5:30 PM were able to get enough blood for everything except the blood culture.

Comments (11)

By Lana, December 14, 2008 4:31 pm

Carmen update: Carmen is doing a bit better. We took both girls to the doctor on Friday. The doctor said that most likely they both had a virus and they should be better by Monday. Both girls haven’t had a fever in a couple of days but both are still coughing. Carmen is too weak for much of a cough anymore…sounds more like spasms. We have been giving her lots of extra Vest treatments (the machine that jiggles up mucus). We don’t have a Cough Assist machine but I am wondering if we should get one.

Friday afternoon we took Carmen for blood work to figure out why she is retaining water. The lab tech could not find a vein so we are going to try again on Monday.

Carmen still has C-diff. Boo hoo! I am going to call her gastroenterologist on Monday and see what we should do next. We haven’t tried a fecal transplant yet. Yes, it’s exactly what it sounds like. Apparently it has successfully treated C-diff in Scandanvia and Canada. Thanks to Danielle for enlightening us. I really can’t think of anything much grosser but ANYTHING to get rid of C-diff!

Both Dave and I are under the weather too. I feel dizzy and Dave can’t stop coughing. Hopefully we will be well by Christmas.

Despite all the sickness, we had a wonderful weekend with Dave’s older brother, wife and kids. Thanks so much for coming to see us! Lauren had a BLAST!

Friday my sister-in-law and I went to a MOPS (Mothers of Preschoolers) cookie exchange. Last week, pre-sickness, Lauren helped me make lemon cookies! Here are some pictures.