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!

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.

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.

Over the past several years, I’ve dabbled with video and have often thought it would be fun to learn more about it and start making some videos myself. So, for the past few months, I’ve been working pretty hard to save up money for a new computer (Our computer is about six years old. It’s fine for everyday tasks like emailing and paying bills but doesn’t quite have the horse power for video-editing, etc.).

I did my research and had my eye on a new computer and software. The day came when I had enough money. I waited about a week to let everything sink in and see if God was going to change my heart/direction (Although He often does that to me — and I am grateful for it — deep down, I was really hoping that He wouldn’t do it this time. I really wanted a new computer! In any event, He either didn’t say anything to turn me around or I wasn’t listening.).

I ordered the computer. Last Friday, it arrived. After a lengthy discussion with Lana about where it was going to go, I set it up in the kitchen/dining room (we like having our computer in the main living area even though it’s not the most attractive decor).

Thursday morning, Lana called me at work:
Lana: Did you do something to the computer?
Me: Which one?
Lana: The old one.
Me: No. Why?
Lana: It won’t turn on.
(After a series of questions/answers/instructions)
Me: I’ll have to look at it when I get home from work.

That night I looked it over and talked about it with my brother, who knows far more about computers than I do. It looks like it’s shot.

I am now left wondering…was this either God’s perfect timing or was it His way of saying, “You don’t need two computers”?

Carmen update: Carmen spiked a 102.8 fever last night. She had a rough night with fevers and high heart rate (130s-160s). She is congested and just looks miserable. 

Lauren also had a fever over 102 last night so my guess is they are fighting the same bug. 

When Lauren gets sick, I give her Tylenol, lots of fluids and try to have her rest. When Carmen gets sick, I think, “Will she make it through this sickness?” 

It has been so long since Carmen has been sick. At least it seems like a long time. Maybe it has only been a few months.

Dave isn’t feeling well either. He has been coughing for weeks and is going to the doctor today. His sickness is most likely a combination of allergies and asthma.

We could sure use prayers here!

I picked up Reckless Faith by Beth Guckenberger at the bookstore this past weekend. The cover caught my eye- a picture of a young Hispanic girl. The back cover sealed the deal. “Time and again I’ve been led to trust God, with my little mustard seed of faith, to see how he not only shows up in our circumstances- but he shows off! It’s not because he needs to prove himself; rather, he is demonstrating to society- the orphans that I serve- that he will be their Father and Protector and Provider.”

For the past two days I haven’t gotten much done as I have read the amazing stories from the Guckenberger’s orphan ministry in Monterrey, Mexico. This is the kind of book that makes me very uncomfortable but in a good way.

Dave and I have both started feeling restless and uncomfortable with life. We have felt for awhile that God is preparing us for something. We talk a lot about how we don’t want to go back to “normal” after Carmen dies. Not that our previous normal life was bad but Carmen has given us a glimpse of a far more fulfilling life. A life where we are giving of ourselves.

We want to live for something more than accumulation and our own happiness. Even if it means giving up comfortable lives, we want to let go and be led. But, gosh, that is SCARY! I’m scared of the possibilities and the sacrifices we might have to make. I imagine myself kicking, screaming, and holding on for dear life to all that is easy and convenient. But I am more scared of not doing anything and letting opportunities pass us by. I do hope that God doesn’t ask me to go somewhere with no air conditioning. I truly detest being hot!!!!!!!!!

We have no idea what the future holds. Right now we have two little girls to care for and love. We are confident that God has plans for us. Just like He had a plan for a little girl in Guatemala.

Thank you God for showing up and showing off in Carmen’s life!

Carmen and me

Carmen update: Carmen has some new problems. She is very swollen, particularly her hands, which are freezing cold all the time. She continues to have diarrhea. I am going to take another stool sample to the lab tomorrow.

For Lauren’s 5th birthday, we had planned a princess party at our house. Lauren invited a few friends and we spent last week frosting and decorating cupcakes.

A couple of days before the party, I got a little worried that two of the moms might be more susceptible to C-diff based on some current medical issues. So rather than everyone coming to our house, I called the moms and asked if Chick-fil-A would be OK instead. I thought that having the party at a different location might reduce any potential exposure to C-diff. The moms all agreed and once I convinced Lauren that she could still have a princess party, she was OK with Chick-fil-A too!

We packed up the cupcakes and princess decorations. Lauren wore her blue princess dress. We would have dressed Carmen in a princess dress but she is too chubby to fit into any of Lauren’s princess dresses! I guess I should have bought a bigger size just for Carmen!

Four little princesses plus one very handsome prince (the brother of one of Lauren’s friends) ran around Chick-fil-A in their princess dresses. Let me rephrase that…the four little princesses ran around in their princess dresses. The brother wore camouflage!

I have to say that Chick-fil-A was AWESOME! We hadn’t made reservations but they set up tables for us, gave Lauren balloons and gave us a coupon, “Buy one nugget tray, get one free”.

Dave’s parents and aunt drove about 7 hours to come to the party. We did not tell Lauren that they were coming so she was very surprised! I wish I had videotaped the moment Lauren saw her NY grandma and grandpa!

After the party, Lauren said it was her BEST birthday party ever! Sometimes the most haphazard, last minute plans turn out the best.

Thanks to everyone who made Lauren’s birthday extra special this year!

Here are a couple of pictures.

Lauren and her birthday cupcake

Me and Princess Lauren

I found this here and think it is absolutely brilliant. Someday, I hope to be able to create stuff like this.

Upside Down from Pace Hartfield on Vimeo.

As you move through the hustle and bustle this holiday season, I challenge you to take a moment to explore a simple story about a young Jewish boy named Jesus. Even if you’ve examined this story a hundred times, it’s worth taking another look.

God came and lived among us. And He is still among us today.

Today is Lauren’s 5th birthday. It is so hard to believe that 5 years ago Dave and I were driving through a snowstorm to get to the hospital. Seems like both a million years ago and yesterday.

I really can’t remember life before Lauren. I can’t imagine what we did to entertain ourselves!

Speaking of entertaining, yesterday I made tacos and for some reason the taco meat was SPICY. I kept saying, “My mouth is burning! My mouth is on fire!” Lauren said, “I know how to fix that.” I asked, “How?” Lauren said, “Stop, drop and roll!”

We love you very much Lauren! You are sweet, sensitive, funny, smart, compassionate and beautiful. You have made us smile every single day for 5 years. You were the one who could get big smiles from Carmen. You love your sister, just the way she is. You love Jesus. We can’t wait to see what God has in store for your life. We think He is preparing you for something amazing. We are very proud of you!

It’s amazing how much someone can grow in 5 years.

Newborn Lauren                                                   Lauren’s 2008 school picture

I grew up in Texas where every tiny town has a 24 hour Super Walmart. If you need groceries, household items, clothes, etc., you go to Walmart. Since moving to the east coast, I have shopped less and less at Walmart. We don’t have a Super Walmart and our store is crowded and a mess.

This past weekend we decided to take a family trip to Walmart. (Actually, Dave and Carmen went next door to Best Buy!) Lauren and I walked around for awhile with my frustration level growing. The aisles were crowded and most of what we needed was out-of-stock. No underwear in Lauren’s size, no Aquaphor, and no Garnier Fructis hair mousse. The last straw was the deodorant aisle. They were out of both Dave’s and my preferred brands.

By this time, Dave and Carmen had joined us and I said, “That’s it! I am NOT shopping here!” Dave suggested we go next door to Target so that’s what we did. We may have paid a couple more dollars at Target but it was worth it. My blood pressure did not reach astronomical proportions and we found what we needed.

For some reason, the state of Walmart makes me sad. This is not the same Walmart that I grew up going to. I don’t think our Walmart experience was Sam Walton’s dream. It sure seems like after the founder of a big company passes away, the stores go downhill. (i.e. Wendy’s, right NY Grandma!?)

Based on our Walmart experience and this year’s Walmart Black Friday stampede death, I think Walmart has some work to do. And until they get it together, our Walmart days are gone! (Or until we move to an area with a big, spacious Super Walmart!)

Lauren and Holiday Shapes Goldfish, bought at Target