Comments (7) 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
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:
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