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By Lana, April 24, 2008 9:35 am

Wow, I haven’t updated in a long time! Lots of stuff has happened and we have been super busy!

First of all, please keep Carmen in your prayers. She is sick again. Maybe it is just a bad cold but her resting heart rate is way too high. Last time this happened she had RSV and ended up hospitalized for 4 days. I will take her to the doctor tomorrow to make sure she is seen before the weekend.

Happy 21st month birthday to Carmen! We missed it by a couple of days but always want to celebrate each day and month with our very special little girl. Thank you to Mrs. Ellis for reminding me today that Carmen truly is a gift and that we will look back on this experience as “the gold” in our lives.

Couple of weeks ago, Carmen had an appointment with a complex care team at Children’s. This was a really great appointment with a new neurologist and complex care pediatrician. Carmen is now on Phenobarbital for seizures and it is helping tremendously. She has only had one seizure since getting the Phenobarbital up to an effective dose. Only issue is that the medication is making her drool constantly so we have started her on Robinul, an anti-secretion drug. It is working really well but we have to make sure we don’t give her too much and dry her out. Everything is a balancing act!

We have finally found a potential reason for Carmen’s ever increasing strider (loud breathing). We took her to an ENT on Monday and got no answers so Carmen’s pediatrician recommended another ENT doctor. I took her today and this doctor took one look down Carmen’s nose and said her airway is extremely swollen due to acid-reflux and that is why her breathing sounds so very labored. Carmen is on two different acid-reflux medications so I thought the reflux was under control. So, back to the Gastro doctor we go and hopefully we can find something that works.

We got the Vest!!! We asked Carmen’s complex care pediatrician if she could fill out the paperwork for Carmen to get it and just a few days later it was on our front porch! The same day we got a letter from our insurance approving it! This is super news. The Vest jiggles up the mucus and will help keep Carmen’s lungs clear. A big thanks to Tricia, Carmen’s insurance case manager, who clearly gets things done and FAST!

Yesterday Dave and I had the honor of speaking to my MOPS (Mothers of Preschoolers) group. Before we found out Carmen has Tay Sachs, I had this dream that we would have the wonderful happily-ever-after adoption story and everyone would be inspired to adopt because of Carmen. We have a very different story than I ever thought. It’s far more painful and difficult and just plain not fair. To be perfectly honest, we would not have adopted Carmen had we known she had Tay Sachs. We requested a healthy infant girl. But, knowing Carmen for the past 16 months and loving her and seeing the blessing she brings to our lives and how much she is teaching us, we are so very thankful that Carmen is our daughter.

Thanks C.F. and Monica for coming to our presentation! Dave was very happy to have another man in the room! Monica thanks so much for the flowers! I felt like I was getting an award! Ha! And thanks to the MOPS moms for the gift certificate to Thai Farm and for babysitting. I suspect Karen was behind that. She knows us well.

I want to close by thanking Sandra for coming over and cleaning my house last week! Sandra is a beautiful lady from our church and she has been asking how she can help us. So, I asked if she could watch Carmen while I cleaned my house. Well, she showed up with bagels and coffee and insisted that she was going to clean. I cannot tell you how wonderful it felt to have a clean house! Thank you so much Sandra for your servant’s heart. I’ll never forget “Maria” cleaning my bathrooms in her heels! By the way, the octopus is still growing in our bathtub!

And, thanks to Marcella for watching Carmen last week and Tina for the Coke for Dave. Tina found Coca-Cola in the Passover section at the grocery store that is made with sugar instead of high fructose corn syrup. Dave said it tasted like the stuff in Guatemala! Thanks also to Tatiana, Rachinee and Karen. Lauren spends so much time with you and I so much appreciate your willingness to be a second mom to my Princess Lauren!

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By Lana, April 7, 2008 8:12 pm

Carmen had a post-hospital doctor’s visit today and she is doing well! She still sounds like she is laboring hard to breathe but she is back to her “normal.” She has an ENT appointment in two weeks to try to figure out what is causing her crazy loud breathing. Until then, we will continue with Albuterol every 4 hours.

Big thanks to Lori for dinner last night (apples in tossed green salad is my new favorite!) and to Rachinee and Wendy for dinner tonight. Chicken Parmesan is Dave’s very favorite. Doug, Dave’s dad said it’s his favorite too! Thanks to Ritha for taking Lauren for the day yesterday. She had a wonderful time and I had a wonderful afternoon nap. Good thing too because Carmen’s night nurse did not show up so I stayed up last night with Carmen. Thanks to Rachinee for taking Lauren today while I took Carmen to the doctor. What would I do without you guys??????!!!!!!!!

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By Lana, April 7, 2008 9:34 am

Sunday after the Tay Sachs conference ended, we drove to Orlando. We got up bright and early on Monday and headed to Disney World. We did not tell Lauren ahead of time that we were going to Disney, just in case our plans fell thru. We decided it would be fun to keep it a secret until we drove thru the gates! As we drove down the road to Disney, Lauren asked, “Why do all the signs have Mickey ears on them!?” Lauren kept asking where we were and I asked, “Where do you think we are, Lauren?” Lauren yelled, “Boston!” When we stopped to pay the parking toll, Lauren said, “That sign says Magic Kingdom!” (She informed me that she sounded it out. I did not know she could do that!)

We had a wonderful day! Lauren was so ex cited to see Cinderella’s Castle. She and Dave road the carousal and we stood in line to meet Darby, Pooh and Tigger. After meeting Darby, we started to walk away and Darby ran after Dave. She pointed to his University of North Carolina t-shirt and gave two thumbs up! (Darby and Dave must both be in mourning today after UNC’s loss.)

While we were looking around one of the souvenir shops, Lauren was asked to be in a little parade around the shop. She was thrilled to dress up as a princess and march around the store. Lauren has been all about Cinderella and Sleeping Beauty in the past but is now mesmerized by Ariel. So, she picked out an Ariel pin for Carmen’s stroller sunshade, an Ariel Polly pocket type set and an Ariel wand.

We watched the Dreams Come True parade and had a great view because they put us in the handicapped section. Carmen’s Kid Kart stroller does look special needs so we were often directed to the handicapped section. We were very appreciative of this special treatment! A heads up to anyone with special needs kids visiting Disney, I changed Carmen’s diaper several times in the First Aid station. This was much easier than trying to put a 30 lb. baby on a tiny changing table! The First Aid station had private rooms with beds to put Carmen on.

For dinner, we had reservations at the Crystal Palace. Pooh, Tigger, Eeyore, and Piglet came to our table while we were eating. Eeyore gave Lauren a big hug and Pooh held Carmen’s hand. The food was good at the Crystal Palace. It was buffet style and had everything from salmon to chicken nuggets. I especially liked the corn spoon bread.

We ended our day by taking the ferry back to our van. We are so glad we went to Disney and made special memories. We took lots of pictures and video that we will always treasure.

Tuesday morning we got up and headed home. We left around 9:30am and got home at midnight. It was a long day but both girls are wonderful travelers. I am far grumpier on long trips than Lauren or Carmen!

One thing we took away from this trip is that we want to do as much as we can while Carmen is alive so we do have the memories. It’s not easy traveling with all the equipment and being on our own at night (without nurses) but we can try weekend trips.

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By Lana, April 6, 2008 9:32 am

Now that Carmen is home (and thank you again for all of your prayers!), I’ll write a novel about our fabulous Florida trip for the annual Tay Sachs family conference! I know you have all been anxiously waiting- ha, ha!

We packed our minivan full and left Maryland Wednesday at 2pm and made it all the way to Savannah, Georgia. We stayed the night in Savannah and the next morning took a quick tour around the town. I would really like to come back to Savannah. I love old southern towns. Beautiful houses, trees, flowers, southern restaurants, etc.

Thursday we drove to Tampa and settled into the Tampa Marriott Waterside Hotel and Marina. Well, more like we dumped out stuff into our room and took off for dinner! We were happy to see Dr. Tifft, Carmen’s geneticist, and Stephen and his family (an adorable little boy with GM1-Gangliosidosis, who lives 10 minutes from us). We had a wonderful dinner (ribs and chicken) and met a few families.

This year 19 children with Tay Sachs or a related disease attended the conference. Along with parents and siblings, some grandparents, aunts, uncles and friends also attended. I was pleased to also see that so many families come back to the conference each year, even after their children pass away.

Friday morning we met the other families in an emotional parents’ session. This session was made up of both families with living children and ones who have already passed away. Each family told their story and many tears were shed. I felt like I was in the presence of greatness. Great strength, compassion, perseverance, and love. These are parents who have become true Tay Sachs experts and medical care. Oh, and they could probably teach a class on fighting insurance companies too!

Friday afternoon we attended a round table discussion on the research being conducted to find treatment and ultimately a cure for Tay Sachs. I think the conclusion is that in 3-4 years a drug may be available to break down gangliosides, the fatty stuff that builds up and causes the extensive brain and spinal cord damage in Tay Sachs patients. This time-frame would be best case scenario. It may take much longer to find a cure but we can always hope!

During the day on Friday, Lauren went to Kiddie Corp, the camp for healthy siblings. Lauren had a blast! As soon as we would pick her up for lunch, she was ready to go back! The kids played games, made crafts, watched a movie, etc. Carmen stayed in the nursing care room. A group of fabulous nurses volunteered to care for the children. I picked up Carmen after the morning session, and she was lying on the bed with Rachel, a 9 year old with Canavan Disease. I wish I had taken a picture or videotaped the moment. Carmen and Rachel were facing each other and Carmen’s hand was touching Rachel’s face. It was a precious moment. One of the nurses, Franci from Alaska, spent a lot of time with Carmen and we hope to keep in touch.

Friday dinner was the only meal not provided by the conference so we ordered room service and put the kids to bed! Lauren usually goes to bed by 7pm and desperately needed a good night’s sleep! My usually calm, happy child was having massive meltdowns!

Saturday morning we kept Carmen with us and attended a discussion/presentation on symptom management. We watched a video, Cameron’s Arc: Creating a Full Life about a family who chose less intervention for their daughter. This video really spoke to me. I often question how much medical intervention is too much. After the video, Big Elise’s (a 5 year old with Tay Sachs) nurse spoke about the therapies and equipment used to keep Elise alive and comfortable. I was happy to learn more about the treatment options. It is very hard because part of me wants to use everything possible to keep Carmen with us. But, I think about Carmen’s future quality of life and the reality of Tay Sachs. As of now, our goal is to keep Carmen comfortable and we will use what therapies accomplish that goal.

During the symptom management class, Eric and Nicole, Rachaeli’s parents held Carmen. Rachaeli is a beautiful 5 year old with Tay Sachs. We enjoyed getting to know this lovely family. The conference truly would not be the same without Eric’s philosophical comments and wit and Nicole’s quite, steady calm. www.rachaeli.com.

Saturday afternoon, Dave took Lauren swimming and I went to another parents’ meeting. After the meeting, we went to a Celebration Dinner. I spent some time talking with Little Elise’s (a 3 year old with Tay Sachs) mom. A few weeks ago, I saw a picture of Elise on her website with a Critter Piller neck pillow. I ordered one for Carmen, a pink puppy, and it works fabulously in her Kid Kart.

Sunday brunch we said our goodbyes and took lots of pictures. It was sad to say goodbye. This conference was the one place where our lives are “normal.” We met many wonderful families and to each family, thank you for sharing your story and your children. If I try to name each of you, I am sure I will leave someone out so I will just say thank you.

Thank you also to the families who brought gifts. RJ’s mom gave Carmen a stuffed horse with an RJ pin, Rachaeli’s dad gave Carmen fuzzy socks, PJ’s dad brought pillows with a hole cute out for ears (PJ’s mom made the pillows), and Dakota’s dad gave us a short pole to attach her feeding bag and pump to a stroller (Ken made these himself!).

I want to close my Tay Sachs Family Conference summary by thanking Mario and Marlin, Bryan’s parents from Guatemala. Mario and I have been emailing back and forth for several months. A while back, Mario offered to try to find Carmen’s birth mom to tell her about Carmen’s disease and that she is a carrier. If Carmen’s birth mom was to have another baby with Tay Sachs, AB Variant, she would know what was wrong. I prepared all the paperwork that might help Mario find her and Dr. Tifft wrote a letter explaining the disease. My friend Milagros translated everything into Spanish. I filled a photo album with pictures of Carmen and our family for Carmen’s birth mom. We gave everything to Mario and Marlin and as Marlin looked at the photo album, she cried. Thru a translator (Ruben, RJ’s dad), Marlin said that Carmen would not have had care in Guatemala and how happy she is that Carmen is with us. Marlin and Mario have been thru so much. Their older son passed away from Juvenile Tay Sachs and now their precious younger son fights the disease. Yet they have smiles on their faces and huge hearts. We told them we would like to give them some money to help with the expenses of conducting a search and Mario said no, we are family now. So, to our new family, thank you.

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By Dave ©, April 5, 2008 9:31 am

A couple of weeks ago I had the privilege of sitting down with a friend and her boyfriend over lunch. My friend’s boyfriend is an independent contractor for a large software development company. For the past few months, he’s been wrestling with some professional and personal questions. Since I was an independent contractor for four years before choosing a different path, he wanted to get my thoughts on a few things.

It was a great conversation but, to be honest, I am pretty sure that I got more out of it than he did. About 45 minutes into the discussion, he said to me, “It seems as though you’ve changed a lot in the last few years.”

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As many of you know, Lana, Lauren, Carmen and I went to Florida last weekend to attend the annual Tay Sachs Association conference. It was great to connect with the other parents. It was also nice to wear shorts and t-shirts in March! At the same time, it was really tough to see the progression of this disease in the other children. It was also hard to see so many other parents struggling with all that this disease entails and what it means for their children and families.

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I was reading Psalm 15 this morning while eating breakfast in Carmen’s hospital room. I love this chapter and read it often. I cannot adequately explain this passage but here is my summary, what I get from it. Do I want to be close to God? If so, I must pursue true character, which can only be found in God. If I really pursue the character of God, I will not be shaken by the painful events in life.

                                                                                …

Like many of the other parents whose children have degenerative diseases, I wrestle with the realities of it and wonder, “Why Carmen? What did she do to deserve this?”

There was a time in my life, not too long ago, when our current situation would have crushed me to the ground. There would have been little left in me except bitterness and anger, little left of me except of pile of rubble.

While I am far from a person of great character, I do recognize some of the changes God is making in me as I pursue Him. It seems as though you’ve changed a lot in the last few years. Yes, that is true. I have changed in the last few years. More accurately, God has changed me a lot in the last few years. And I am extremely grateful!

That is a truth that I overlook all-too-often. I am not yet the man I want to be but praise God that I am no longer the man I once was (my paraphrase of Martin Luther King Jr.). Thank you, Lord.

Thank you Chris, Eric F., Mario, Andy, CF, Eric K. and many others who have reminded me recently that God is up to something…and we are all invited to participate. God is up to something in me and through me.

I can’t wait to see it unfold!