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.

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!

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”.

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:

New kind of normal. Our normal. Not normal. These are all phrases you hear when you spend time with families with terminally ill children.

Our lives are not “normal.” Letting go of that normal has been very, very hard. I often wish that life was easier. I wish that my two little girls were running around, laughing and playing together. I wish that Lauren and Carmen would grow up together.

For some reason, God chose us for a not-so-normal life. We took the first step by adopting internationally but we had no idea that road would lead us to a terminally ill child. Letting go of my own desire for a normal life has been a painful process and one I continue to struggle with.

I keep going back to Hebrews 11, the faith chapter. Normal is not spending a year in an Ark. Talk about life on hold! Normal is not waiting until you are 90 and 100 years old for a child. Most of us don’t like waiting one day for what we want. Normal is not hiding your child for 3 months from a king intent on killing all baby boys. Normal is not giving that baby boy to the very people enslaving and mistreating your people. I doubt Moses’ mom envisioned this life for her son.

I can’t think of anyone in the Bible who lived a normal life. And yet their lives are awe-inspiring. So perhaps normal is over-rated. I do know that this past year with Carmen has changed us forever. I don’t think we will ever be normal again and I am not sure we would want to be. I hope and pray that for the rest of our lives, we let go of normal. And that we are willing to take the big “risks” that are both painful and rewarding.

Me and Carmen, an amazing little girl who is teaching me so much without ever uttering a word.

Carmen update: Carmen’s pediatrician called and Carmen still has C-diff. We are starting another round of Vancomycin. Her doctor recommended starting VSL#3, a probiotic with 450 billion live bacteria per packet. Carmen has also developed a yeast infection on her leg. The area stays clean and dry so I have no idea how this happened. We are putting Nystatin on the area and will continue loading her up with probiotics. Hopefully something will help. Please pray for Carmen.

I took Lauren in for her pediatric opthamologist follow-up. She is seeing 20/30 and 20/50 with her glasses. We will go back for another visit in two months. If her vision with glasses hasn’t improved, she will have to wear an eye patch for a few hours per day. She does not like that idea at all so we are praying that her vision improves! If she does have to wear an eye patch, I hope it is pink and sparkly!

While at Lauren’s follow-up visit, I asked the doctor if he could take a look in Carmen’s eyes. He was happy to check her. He turned off the lights and looked in her eyes with a very bright light. Carmen’s eyelids did not even flutter. He said that most likely she does not see anything. A year ago Carmen was still tracking objects. This disease progresses so quickly and so relentlessly.

Thank you Wendy for watching Carmen on Monday so I could take Lauren out! Lauren was very happy to have “mommy-time” and totally enjoyed her Panera Cinnamon Crunch bagel!

Yesterday as I was unpacking my grocery bags, Lauren saw a can of tuna. She looked very worried and upset and asked, “Mom, you aren’t going to cook a mermaid, are you?” I love 4 year olds!!!

I would like to:

1) Take professional looking pictures. The kind that make you go “WOW!”

2) Speak fluent Spanish.

I absolutely love beautiful pictures. They make me happy. Especially razor-sharp pictures that pop off the page. I am finding that actually taking a picture like this is impossible when you don’t know what you are doing with your camera! So, I’ve been reading up on photography, practicing, and making my “wish list” of lenses! I have a loooonnnngggg way to go!

Before Carmen’s diagnosis, I felt very strongly that Carmen needed to know Spanish. We live in a very diverse area with a large Hispanic population. I didn’t want Carmen to grow up here and not speak Spanish so my thought was that we all needed to learn Spanish! (Dave speaks some Spanish but he would like to be fluent.) Lauren took a Spanish class and loved it. After Carmen’s diagnosis, learning Spanish dropped off my radar. But, I have hopes that someday we will learn the language and that someday we will go back to Guatemala.

I have no plans to actually start learning Spanish at this point but it is a skill I would love to have!

What skill(s) would you like to have???

Dave took this picture yesterday and I think it is really, really good! These are roses from my birthday.

Thank you so much for all the wonderful birthday comments!!! You all made my day!

My day started when I went downstairs to find that Dave and Lauren made breakfast for me: scrambled eggs, toast and raspberries. Before he left for work, Dave gave me a birthday party invitation that he and Lauren made. 5 o’clock sharp I was invited to a party with fun and games, cake, and birthday presents.

My friend Karen brought over a present: scones and green tea. Thank you Karen! The tea is amazing!

The girls and I went to my friend Lori’s house for birthday lunch. Lori knows me well and made a big salad with lots of avocado! Thank you Lori!

My birthday party time arrived and Dave had red roses, balloons and princess decorations! He got chicken kabobs for us and pizza for Lauren.

After dinner, it was time for birthday cake. Lauren picked up the cake and down it went. Upside down on the kitchen floor. It was one of those moments when you see that your child is crushed and big tears start pouring down her face. It’s not one bit funny but you have to hide your face because the whole event is hysterical. We cleaned up the frosting and ate the cake. It was delicious.

Thank you Dave and Lauren for all your hard work. Thank you for the Christmas CDs, movie and book. I love you!

Here are some pictures from my party:

Me with balloons and Carmen with a birthday hat (Carmen has slimmed down considerably since we cut her calories to 500 per day. She looks so much better and her breathing sounds great!)

Lauren anxiously watching the animal balloon-making, afraid the balloons might pop. When Dave finished the dog, she was happy!

The salvaged 33rd birthday cake!

In honor of Lana’s 33rd birthday (tomorrow, November 7th), I am sharing 33 things about her that I absolutely love and appreciate. Here they are, in no particular order:

1. She has a heart full of compassion
2. She has a smile that lights up a room!
3. She is smart
4. She is caring
5. She is unmaterialistic
6. She is a great cook
7. She is an excellent mother and wife (not just because she is a great cook…although that certainly helps!)
8. She does whatever it takes to get through
9. She is family-oriented
10. She is studious, unrelenting until she finds the answer to her question/challenge
11. She is not afraid to say, “I am sorry”
12. She has great hair
13. She is determined
14. She is empathetic toward others
15. She is sensitive
16. She has beautiful blue eyes
17. She is loyal
18. She is a really great friend (in part, because she is so loyal)
19. She has amazingly soft skin
20. Her growing photography skills
21. She is humble
22. She has some pretty cool nicknames: at-Lana Braves, Lana Banana
23. She loves God
24. She is a great role model
25. She is more interested in others than herself
26. She is a wonderful conversationalist
27. She is a listener…although she can certainly talk your ear off too!
28. She is gentle and makes her southern heritage shine
29. She is grounded (present-focused)
30. She is adaptable
31. She is supportive
32. She has a really cool blog (and occasionally even lets me write on it…just kidding!)!
33. She loves me even though she knows me!

Here is a picture of Lana that Lauren took recently:

I love you Lana! Happy Birthday.

What do you love and appreciate about Lana?

Yesterday an amazing 6 year old lost her battle to Sandhoff, a disease very similar to Tay Sachs. We met Riley and her parents at the Tay Sachs annual family conference in March. Riley’s parents took such wonderful care of her. We will be praying for this wonderful family today and in the coming days. Please consider leaving a note on Riley’s caringbridge site. http://www.caringbridge.org/visit/princessrileybear 

For my friend Karen:

My favorite food is really good Indian food. Every birthday I ask for Chicken Tikka Masala from this yummy place called Tandoori Nights. My neighbor shared a recipe for Chicken Makhani (Butter Chicken). I made it and it is really good! I will warn you that your house will seriously smell like curry and garlic so maybe have some chocolate chip cookies ready to bake for a better smell!

The base of this recipe uses a paste by Kitchens of India (see picture below). I did not follow the recipe on the back of the package but used my neighbor’s recipe. I did not put any butter in the butter chicken dish so the name is a bit misleading!

Butter Chicken

1 package Paste For Butter Chicken Curry by Kitchens of India

1 lb. boneless, skinless chicken breast or tenders, cubed

1/2 small onion, minced

1 tsp. Coriander seeds

2-3 cloves fresh garlic, minced

Slice of fresh ginger, minced (about a small chunk of it!)

1/2 jalapeno (optional), minced

Basmati Rice

Saute minced onion and slightly bruised coriander seeds in a small amount of olive oil. Add minced ginger, garlic, and jalapeno (optional) and cook until limp. (I minced all of the ingredients really fine with a food chopper.)

Brown chicken. Add sauteed vegetables and curry paste and 1 cup water. Cook on low for 20 minutes and then high for a couple of minutes until thickened.

Serve with steamed Basmati rice, steamed broccoli and Naan bread (I buy frozen Naan bread at Trader Joe’s.)