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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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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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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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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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

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Happy 18 month birthday Carmen! We love you very, very much. We celebrate each month of your life.

Thank you Dee for your generous and thoughtful gift! The girls love their new clothes and stuffed animals! You made our day!

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If you told me five years ago that I would write what I’m about to write, I would not have believed you. I would have laughed at you. I might have even punched you.

                                                                                …

As I review 2007 in my mind and consider all the things for which I am thankful, it is a particular person who tops my list. But before I tell you who it is, I need to provide just a little bit of the back-story.

I grew up in a Christian home. While I’m oversimplifying a bit, that meant that we prayed before every meal, went to church every Sunday, occasionally read the Bible as a family and did not watch bad movies (at least not really bad movies). I went to our church’s youth group most weeks because it was fun and there were cute girls there every once in awhile. I was the rebel in my family, although I didn’t really get into that much trouble. Believe me, it’s not that I didn’t try to get into trouble; it’s just that my dad was a police officer and my mom filled various positions within the educational system over the years. Between the two of them, they knew everyone. And I do mean everyone! If I did something, they knew about it before I got home. But, alas, I am digressing just a bit…

About the time I entered junior high school, my dad decided to go to seminary to become a pastor. And that is when things started to go south, at least between him and me. As my dad progressed through seminary, he accepted additional responsibilities in our church and in our community. From the outside, my dad looked like a saint. But I saw him at home and he certainly was not a saint.

Please do not get me wrong. My dad was not awful. He just wasn’t the same person at home that he was in the eye of the public. I thought my dad was a hypocrite because he didn’t always practice what he preached. His “old self” was still very much a part of him. And that was hard for me to accept. While this was largely an excuse, I decided that if my dad was a real Christian, I didn’t want to be a real Christian. Sure, I was grateful for the assurance I had of going to Heaven when I die (I asked Jesus to be my savior when I was about eight years old). However, I had little intention of living my life for Christ.

                                                                                …

They say that time has a way of changing things. But I don’t think time actually changes a thing. It certainly doesn’t heal hurt and pain. At best, time just dulls them. In some cases time actually amplifies them. But God…God can change things. He can restore broken relationships. He can heal years of hurt, pain, anger and bitterness. He can make it enjoyable to be around someone who, at one point, you wished was not even a part of your life. God can change things. God does change things. And that’s exactly what He did between my dad and me.

                                                                                …

I am sure that you’ve guessed by now but just in case you haven’t, here it is. As I reflect on all the circumstances and events that surrounded my life over the past year, I am most thankful for my dad. So Dad, when you read this (and I know you will), thank you for forgiving me for all the awful things I said to you and about you while growing up. Thank you for being available and interested in spending time with my family and me now.

Thank you God for moving my dad and me past our past, for healing our relationship, for doing what only You can do.

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Today is a VERY special day! One year ago, we brought Carmen home from Guatemala. A year ago we had such hopes and dreams for our little girl. Now we hope that Carmen will feel loved and that we can keep her comfortable. And we hope and pray that Carmen will make a difference in this world and that we can share her with many others.

My mom gave us a CD with a song called “Little Hands, Little Feet”. One line says, “You were created for eternity.” Based on my understanding of the Bible, I believe that Carmen will spend eternity in Heaven. There is one particular passage, 2 Samuel 12:19-23, in which King David grieves after losing his son. He says that the child will not return to him but that he will go to the child. Many scholars believe that this verse points to babies/young children going to Heaven since they never have the ability to make a decision to follow Jesus. This makes sense to me. So I think about God choosing Carmen to have eternal life- how special she must be to Him!

A big thank you to John and Jessie for the TV for Carmen’s room for the nurses and to Bella Tunno for the bibs (www.bellatunno.com). To my Aunt Sally for making dresses for Carmen that snap all the way down the front. And to Rachinee and Tatiana for bringing Lauren home from school. And to Monica for playing card games with Lauren today!

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I am reading a wonderful book called The One Year Book of Hope by Nancy Guthrie (www.nancyguthrie.com). Nancy has an older son and lost two children to Zellweger Syndrome, a rare genetic disease in which the children live about 6 months. After her daughter, Hope, passed away, Nancy’s husband underwent a vasectomy because they knew they had a 25% chance of having another child with Zellweger Syndrome. A year and a half after Hope’s death, Nancy discovered that she was pregnant. This baby also had Zellweger Syndrome. Gabriel was born and lived 183 days. Rather than feeling incredibly sorry for themselves, the Guthries chose to view their children as gifts and blessings. From my own experience, this is a choice. I can choose to groan and moan about my horrible luck (and this is very, very tempting at times). I mean, how unlikely that we would adopt a seemingly healthy child from Guatemala who later would be diagnosed with an ultra-rare fatal genetic disease? I can choose to view Carmen as an incredible gift. I have to give her back much too soon but right now I can enjoy my very precious little girl.

This week Carmen has three doctors’ appointments. Physical medicine specialist, orthotics to measure for ankle braces, and appointment to schedule G-tube surgery. I clogged up Carmen’s NG-tube again with Prevacid- eek! Today I soaked the Prevacid tablet in Coke so hopefully no more clogs!

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We spent this morning getting Carmen’s room as convenient as possible for her nurses and for us. We added shelves to store all of her medical supplies and rearranged furniture for easy access to her suction machine and nebulizer and feeding pump. We are planning to put a small TV and DVD player in her room so that the nurses have something to do while she sleeps. Carmen’s room is very small so it is getting rather packed full! Hopefully in our next home, she will have a big main floor bedroom.

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