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By Lana, January 29, 2008 8:37 am

We had a wonderful time at our Cookie Lee Jewelry friend-raiser benefit party for Carmen! Old friends and new friends stopped by and it was just great to see everyone. We are so very grateful for Rachinee and her hugely generous heart (you inspire me, Rachinee!) and all who are taking part in this journey with Carmen. I don’t know the specifics yet, but Rachinee had such a good turn-out and lots of sales. In my opinion, Cookie Lee jewelry is great- it’s really cute and reasonably priced (adding my advertisement for Rachinee!). Thanks to Azeb for the lovely orchid set. I will cherish wearing it! And, thanks to Karen for the princess crown for Carmen and the ballerina necklace for Lauren! And, thanks to Dave for the Valentine’s Day gift that I ordered for myself and that he hasn’t seen yet! Hee! Hee!

A wonderful friend came to the party and gave us a very generous gift. You know who you are and thank you so very much!

Yesterday, I drove to Bethesda to pick up Carmen’s ankle braces. However, the braces are not the right ones, so a rush order is being done for adjustable ones and Carmen should have them in a week or so. It was an unproductive visit but Monica (a Hospice volunteer who came along with us) and I had fun laughing about the ridiculous parking situation and the little old lady who took our handicap parking space because she was going the wrong way down a one way and got there first!

We got a delivery yesterday- a pulse oximeter and oxygen machine and tanks. Carmen’s breathing sounds so labored at times that her pediatrician felt we should have oxygen available.

This morning, Carmen and Lauren got a package in the mail from a wonderful family in Ohio! This family adopted a beautiful little girl from Guatemala. I followed their story and blog because Carmen and Mikayla are about the same age and we were in the adoption process at the same time. Their son, Alec, made Build-A-Bear stuffed animals for the girls. He made a white puppy with red hearts for Carmen and a bear with a pink/black polka dotted dress and pink bows for Lauren. Thank you so much to this wonderful family and especially to Alec who brought big smiles to Lauren! Carmen cannot see much so I love to have soft things for her and the puppy is just perfect!

Thanks to everyone who has signed our guestbook. We love reading the messages!

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By Dave ©, January 27, 2008 8:36 am

I’ve had questions, without answers. I’ve known sorrow. I have known pain.
But there’s one thing that I’ll cling to. You are faithful. Jesus You’re true.

When hope is lost, I’ll call You Savior.
When pain surrounds, I’ll call You healer.
When silence falls, You’ll be the song within my heart.

In the lone hour of my sorrow, through the darkest night of my soul,
You surround me and sustain me, my defender, forevermore.

When hope is lost, I’ll call You Savior.
When pain surrounds, I’ll call You healer.
When silence falls, You’ll be the song within my heart.

And I will praise You. I will praise You. When the tears fall, still I will sing to You.
And I will praise You, Jesus praise You. Through the suffering still I will sing.

Oh yes, You are good to me. You’ve always been good to me, so trustworthy.

When hope is lost, I’ll call You Savior.
When pain surrounds, I’ll call You healer.
When silence falls, You’ll be the song within my heart.

How faithful and true, sustain me through and through, You are hope and truth.
You’re my spring of living water. You’re my spring of living water in the lone hour of my sorrow.

The song lyrics above are from Newsboys, “When the Tears Fall”, written by Tim Hughes. All song lyrics are the property and copyright of their original owners. Any song lyric on this website is and may only be used for private use.

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By Lana, January 27, 2008 8:34 am

Tomorrow Carmen gets her ankle braces. Her ankles are getting stiffer so hopefully the braces will help put her foot in a better position. We picked out some cute ones- pink with heart straps!

Also tomorrow, Rachinee, is hosting a Cookie Lee “friend-raiser” for Carmen. We will have it at our house from 2-7pm, open house style.

Last week Dave and I met with Carmen’s pediatrician to talk about our plan for Carmen’s life. Dr. Pedreira is a very wise man and we wanted his thoughts both from a medical perspective and a Christian perspective. I’ve really been struggling with what to do for Carmen- what will make her comfortable and what is just too much. I also worry about what her life will be like in the coming months and hopefully years. I want her with us for as long as possible but I don’t want her to suffer. Dr. Pedreira gave us some advice that literally lifted a burden off of me. He said to really focus on what will make her comfortable TODAY. I think I can live with all of our decisions if I know that every decision we make is based on making Carmen comfortable. I have been so worried that we will make a selfish decision and that can go both ways- keeping her alive or letting her go. So, in our quest to make Carmen comfortable, we may make decisions that prolong her life and we may make decisions that have the opposite effect, but we know our motivations and I can live with this path we are choosing.

Yesterday, we went to TJ’s birthday party and had a wonderful time! Carmen got one tiny bite of chocolate cake (like crumb size)! The party was at one of those fun kid play places and the owner gave me a free pass to bring the girls back another day. She asked me about Carmen and said she used to be a neonatal intensive care nurse. I know most people are hesitant to ask about Carmen but I really, really don’t mind one bit. I like to take the opportunity to share about Tay Sachs, AB Variant. Seven months ago, I had never heard of Tay Sachs or any of the similar diseases and now I could give a lecture on the subject- Ha! Ha! I think Dave had as much fun as the kids at the party. Well, at least with the pom-poms!

After the party, TJ’s family took us to lunch at Fuddrucker’s and that was a special treat for our family- thank you! This brought back really fun memories for Dave and me. Way back in college, we were mystery shoppers for Fuddrucker’s. We were poor college students and had plenty of time so we would get paid $20 to go eat at Fuddrucker’s and then fill out an insanely long survey on the food, restaurant cleanliness, customer service, etc.

Dave and I host a Bible study in our home (we just finished Andy Stanley’s Breakaway series) and I want to thank Claudia who keeps bringing AMAZING desserts!

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By Lana, January 25, 2008 8:33 am

Today was a restful day. I have one million things to do but decided to just enjoy the girls. So, I held Carmen while playing paper dolls with Lauren. Then Lauren and I did Pilates while Carmen napped and later gave each other manicures! Nothing quite like letting a 4 year old buff your fingernails and apply cuticle oil!

This morning Carmen’s Physical Therapist showed me how to position Carmen for chest PT. Carmen looked like an acrobat!

We have a fun weekend coming up. Lauren’s good friend, TJ, is turning 3 and we are all going to his birthday bash.

Carmen’s 18 month checkup was yesterday and she is now 27 lbs. and 32 ½” tall!

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By Lana, January 22, 2008 8:32 am

Sorry for the lack of updates lately! We have been busy, busy. My mom came for a 2 week visit and we had a wonderful time with “Texas Grandma.”

Carmen’s G-tube surgery is scheduled for January 31st and she will stay in the hospital as long as 4-5 days but we are hoping more like 3 days.

I was thinking today about how different Carmen’s life has become in six short weeks. Six weeks ago she was still eating by bottle and was taking no medication. Now, she is only fed by tube and is taking 1) Keppra two times per day for seizures, 2) Prevacid two times per day for reflux, 3) Reglan three times per day to help empty her stomach and reduce reflux, and 4) Pulmicort two times per day and Albuterol as needed for breathing. Carmen also gets occasional Milk of Magnesia when prune juice doesn’t work for constipation and Robitussin to help her cough. My guess is that the list of medications is going to get longer as this disease progresses. Once Carmen has the G-tube, I have quite a few natural things that we will give her. My sister-in-law, Trish, has helped me come up with some ideas for things that will improve Carmen’s immune system and help fight colds. I decided not to risk putting anything down the NG tube except what is absolutely necessary! It is not worth clogging the tube and having to pull it out and reinsert! I’ll write a summary of the natural stuff we are giving Carmen at a later date.

Our insurance approved 6 more months of night nursing! This is a HUGE answer to prayer. Carmen has wonderful nurses and I sleep like a rock because I know she is safe and in good hands