Carmen update: Carmen had her feeding tube replaced on Tuesday and all went well. This was the original tube that was placed in January and had an inside piece that was larger then the hole in her stomach. The inside piece kept the tube from falling out but also meant that a doctor had to pull it out to replace it. Now, we have a tube with a balloon on the inside that can be deflated so that we can replace the tube ourselves whenever it starts getting gross. Pulling the old tube out literally took about 1 second. Carmen was asleep and woke up when the tube came out but did not appear distressed.

Carmen’s gastroenterologist asked for another round of C-diff tests. Carmen still has the same symptoms (diarrhea and mucus) so we are certain she still has C-diff but will do the tests again.

We had a very nice Thanksgiving. Our former neighbor dropped off a home-made pecan pie. Thanks Salih! And some friends came over and brought most of Thanksgiving dinner. We had turkey, stuffing, gravy, mashed potatoes, sweet potatoes (with and without marshmallows), corn, butternut squash, green bean casserole, creamed onions, collard greens, rolls, cranberry sauce, pecan pie, apple pie with ice cream, and butter rolls. I ate and ate and ate the collard greens. They were soooooooo good. I guess my love of collard greens comes from my Texas roots! Thanks to C.F. and Indira for being so thoughtful and including us in your Thanksgiving!

I was looking through some pictures today and found this picture from November 2007. I was running Carmen’s bath and had stripped her down to her diaper. Lauren covered her up with baby washcloths! She said she didn’t want Carmen to be cold.

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We hope you have a very Happy Thanksgiving!

Love,

Dave, Lana, Lauren and Carmen

Lauren’s Turkey Craft

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I often write about pastors who influence me. Today, I’d like to take a brief moment to write about my pastor, Pastor Dale O’Shields of Church of the Redeemer.

Lana and I moved to Maryland during the summer of 2002. Right before we moved, a good friend of Lana’s gave her a tape of some pastor in Gaithersburg, MD. “I’ve never been to this pastor’s church but someone gave me his tapes and he’s really good,” Lana’s friend said. So we looked up the church and decided to visit it the next weekend.

Sunday morning arrived. The service was just about to begin. We sat down in the balcony. The music started and everyone started singing. Five minutes into the service, Lana and I turned and looked at each other, then smiled. Neither of us said a word but we both knew exactly what the other was thinking; this is the place for us!

It is not coincidental that I have made tremendous strides forward in my spiritual journey since moving to MD and becoming part of Church of the Redeemer. It is not coincidental at all.

Thank you Pastor Dale! Thank you for listening to God when he directed you and your family to move to Maryland in 1986. Thank you for starting Church of the Redeemer. Thank you for your unwavering commitment to Christ! Thank you for the deep love you have for this local body. Thank you for your continual investment in us.

Here is a picture of Pastor Dale and his wife Terry that I stole borrowed from the Church of the Redeemer website.

What pastor or spiritual leader do you want to thank?

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The first of a few Thanksgiving journals…

Thanksgiving is my very favorite holiday. I just love that we have a national holiday focused on being thankful. I love spending time with family and friends. I love the food! I’m not sure why I only eat sweet potatoes on Thanksgiving considering how much I enjoy them!

This Thanksgiving we are very thankful that Carmen is doing so well. So many times this summer we did not think Carmen would make it through the day or week. Several times Carmen’s pediatrician asked to be paged if Carmen passed away over the weekend.

We don’t know how many more Thanksgivings Carmen has so this one is bittersweet. We are so thankful she is here with us and doing so well. But I do wonder if this will be her last Thanksgiving. Only God knows. Psalms 139:16, “All the days ordained for me were written in your book before one of them came to be.”

Here is a recent picture of Carmen. Doesn’t she look lovely in yellow?! Oh to have beautiful golden skin!

What are you thankful for?

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We got snow flurries yesterday!

Lauren ran around on the deck and scraped up every snowflake. Then she ate the snow.

She came inside and we had hot chocolate.

I was busy working on something and Lauren was bored. I found her in the kitchen, surrounded by Styrofoam “snow.” Ah, what a mess! A big, delightful mess!

Totally Yummy Hot Chocolate- one serving

2 Tablespoons sugar

2 Tablespoons Hershey’s Cocoa powder

Dash salt

1 cup milk

1/4 tsp. vanilla

Put all in saucepan. Cook and stir over low heat until hot. Do not boil.

Does it snow where you live? If so, has it snowed yet this year?

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We got a wonderful surprise in the mail today! Rashmi, along with some friends, sent us a collage of Carmen. Rashmi took these pictures on Carmen’s birthday, July 20th, 2008.

Lauren saw the collage and said, “That is so beautiful I can hardly look at it.”

Thank you so much to Rashmi and friends for brightening our day! www.rashmipappu.com

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Before I get into our continued C-diff saga, I want to ask for prayers for sweet Isaiah. He is 20 months old and has Tay Sachs. He only has a short time left. I am sure his parents would appreciate prayers and notes of encouragement in Isaiah’s caringbridge guestbook. http://www.caringbridge.org/visit/isaiahproject.

(After I posted this journal, I checked Isaiah’s site and read that he passed away tonight. My heart goes out to this family. We met them at last year’s Tay Sachs family conference. Isaiah was an adorable one year old when we met him. Every time we hear of another child with Tay Sachs passing away, our hearts hurt. This one is particularly hard.)

We took Carmen to Children’s to have her feeding tube replaced today but the doctor needed additional supplies so we rescheduled for Tuesday. We decided to do this bedside, without anesthesia. We are not sure Carmen would do well under anesthesia and might not be able to come off a breathing tube so bedside seems to be a better choice. Hopefully she will not be in pain.

We talked to Carmen’s gastroenterologist about the C-diff. She said to continue the Vancomycin and the VSL#3 probiotic. I have been giving Carmen 1 packet of VSL#3 per day but the doctor is going to look into a larger dose. She said they give some elderly people 6-8 packets per day! Considering that each packet cost between $1-2, that is not cheap. We have always thought that if we can’t get rid of the C-diff with oral antibiotics, the next step would be IV antibiotics. The doctor said that IV antibiotics are less likely to get rid of C-diff than oral antibiotics. That is not good news because we are running out of options.

The doctor did say that perhaps changing the feeding tube would help as C-diff might be colonizing in the tube.

And Dave’s sister suggested we give Carmen a teaspoon of raw apple cider vinegar every day to get her pH balance to a good level so that the probiotics can work.

C-diff is contagious and we have been concerned about anyone catching it from Carmen. The doctor said that the people to really be concerned about are the elderly and immunosuppressed. She said that babies often carry C-diff but have no symptoms so young babies are not as much of a concern. (I read that 80% of babies have C-diff but do not show any symptoms so it is not considered problematic- interesting, huh?) 

We do not want to sequester Carmen away for the rest of her life. Or turn into hermits ourselves. That is a seriously depressing thought. We don’t want to put others at risk either. So, please, please pray that the C-diff goes away!

C-diff is a seriously frustrating condition!!!!!!!!!!!!!!!!!!!!!!!

Lauren and either Dave or New York Grandpa (I can’t remember who!) made this bracelet for Carmen.

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We want to wish my dad, Texas Granddad, a very happy birthday. My dad is an artist and in the spirit of the coming holidays, here is a picture he drew of Santa Claus. Happy Birthday Dad!

Today is Carmen’s 28 month birthday so happy birthday to Carmen too!

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When we first found out about Carmen’s disease, I remember thinking that life was going to be on hold for the next few years, which bothered me tremendously. Recently, I’ve begun to realize that our lives are not on hold; they are simply in focus.

On hold.

In focus.

There seems to be a subtle difference between the two. I choose and prefer “in focus”.

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Update on Carmen: We are taking Carmen to have her PEG feeding tube replaced on Thursday. Please pray that she is in no pain. The current tube is growing mold in it. Well, maybe it’s mold or maybe it’s C-diff. Carmen is still battling C-diff. She is 5 days into her 10 day course of Vancomycin (the second course of Vancomycin) and no results yet. Please pray that C-diff GOES AWAY!!!!

Free for anyone who can use them: We have a brand new, never worn pair of Answer 2 shoes designed to be worn with orthotics and AFOs. They are size toddler 6W (wide).

We tried ankle braces for Carmen but finally decided that daily stretches work better for her. We never could get a good fit for the braces and driving 45 minutes to the orthopedist over and over just wasn’t working for us. The shoes are meant to be worn over the braces.

I would love for someone to actually use them! They are really cute! If anyone would like them, please contact me at lana@beautifulcanvas.org.

Description of shoe: This shoe has symmetrical straight last, added depth (8mm or 5/16″) deeper than conventional straight last shoes. It has better accommodation for orthotics, AFO and internal modifications. There’s long medial counter to provide support and stability. This shoe comes with 3 removable inserts for flexible fitting. It has extra length straps.

Here’s a picture:

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