Happy Easter!

Happy Easter! We have a full house with Great-Grandma, Grandpa, Grandma and Aunt Ruthanne! Hope you all have a wonderful Easter Sunday.

 

The Kid Kart Finally Arrived!

Sorry for the lack of updates! Just as Dave and Lauren got well, I got sick! Wednesday, my father-in-law drove from New York to help me with the girls. I feel a lot better now and as long as Carmen stays well, we will be going to the NTSAD (National Tay Sachs and Allied Diseases) annual family conference in Florida. We are very much looking forward to meeting other families and spending time in sunny Florida. I have about a million questions about how best to care for Carmen.

Carmen continues to have seizures despite the increase in seizure medications. Hopefully we will find something that helps her. She stops breathing during seizures several times per day but always snaps out of it without intervention.

Carmen finally got her Kid Kart adapted stroller this week! I am happy to say that we really like it. Carmen seems very comfortable and breathes well in her stroller. Plus, it is nice to have her sitting high up so she can be part of meal-time and other activities. A different headrest has to be ordered because the tiny one that was originally ordered does nothing to keep her head in place. In the meantime, we have her pink doggy Critter Piller wedged into the seat to keep her head upright!

For those who attend our church, check out page 16 of the new Connections magazine! Susan did a great job interviewing us and writing the article and thanks to Melanie for letting COR use the pictures! Lauren was THRILLED to see herself in a magazine. The article is about our involvement in small groups in our church and our journey with Carmen.

Thanks to Monica for watching Carmen this week while Grandpa and I took Lauren to the dentist! I really do not know what I would do without our Hospice Angel!

Ritha, Salih and Bianca, I hope you enjoyed the Easter presentation! I am sorry I missed it but I did not want to cough all over everyone!

 

Carmen is 20 Months Old Today

Happy 20th month birthday Carmen! You are so sweet and so content and we love you lots!!!!!!!!!!!

 

Moroccan Meatballs

Dave and Lauren are FINALLY feeling better! I aired out the house yesterday and cleaned everything with Clorox and Lysol so hopefully I have killed the germs in here! Thanks to everyone for your prayers. So far, Carmen and I are feeling well.

Couple of nights ago, Lauren woke up and asked for water. After she took a sip, she said “Delicioso!” and immediately went back to sleep!

Thank you to our friend, Indira, for bringing dinner tonight! The chicken noodle soup was yummy and the biscuits were perfect! Tell C.F. thanks for plucking the chicken and we hope he enjoyed his biscuit!

Just for fun, here’s a recipe that I recently found. I have made it twice, once for a party and once for a new mom. It’s yummy!

Moroccan Meatballs with Apricots, Tomatoes, Almonds and Rice
1 lb. lean ground beef
¾ tsp. salt, divided
¼ tsp. ground cinnamon
¼ tsp. black pepper
1 Tbsp. olive oil
1 small onion, diced
1 cup sliced dried apricots
½ tsp. red pepper flakes
½ tsp. ground ginger
1 large can (28 ounces) diced tomatoes, undrained
Basmati Rice
¼ cup sliced almonds, toasted

  1. Preheat oven to 325 degrees.
  2. Combine ground beef, ½ tsp. salt, cinnamon and pepper in bowl. Shape into 1 inch balls. Heat oil in large skillet. Add meatballs, brown on all sides. Remove to plate. Add onion and apricots to skillet. Cook 5 minutes or until onion is tender. Stir in tomatoes with juice, remaining ¼ tsp. salt, pepper flakes and ginger. Simmer 5 minutes.
  3. Meanwhile, cook 4 cups of Basmati Rice (I use a rice cooker). Spoon cooked rice into 9×13 pan (if it doesn’t all fit, you can use two pans, whatever sizes work to fit all the rice. Or, you can use less rice and have more topping.). Top with meatballs, spoon tomato mixture over meatballs. Bake for 20 minutes or until meatballs are no longer pink in center. Sprinkle with almonds.
 

The Flu is in the House

Dave and Lauren both have the flu. Seems the flu shots were not effective this year. Yesterday morning, Dave went to the doctor and tested positive for the flu. A very kind friend, LaToya, drove him to the doctor. Thank you so much LaToya! (And thank you to Shar for being in your office and so quickly finding LaToya!) Lauren was feeling horribly and Carmen was asleep after staying up for much of the night and it was such a HUGE help to know Dave was being taken care of! Yesterday afternoon, I took Lauren to the doctor and she also tested positive for the flu. I am loading all of us up on Vitamin C and other good for you stuff!

A big thank you to my friend, Karen, for showing up with dinner! (Thin mints are my favorite Girl Scout Cookies!)

I reread some of my journal entries and wanted to clarify something I wrote. A few entries ago I mentioned that Dave and I are hoping to someday help families adopt, in Carmen’s honor. I also said that many of the families affected by Tay Sachs make it their life mission to search for a cure but that Dave and I are thinking of focusing on adoption support. In hindsight, I think saying that could be offensive to those families who are investing so much emotion, energy, time and money towards a cure. I am sure that for the rest of our lives, Dave and I will support the search for a cure. A variation of this disease has forever changed us and without a cure, will take our precious daughter. So, I apologize if I came across as downplaying the importance of the search for a cure mission. The families involved are amazing and unwavering in their dedication to this very, very important cause.

Last night Dave, Carmen and I watched American Idol. I have watched AI since the first season and look forward to Tuesday and Wednesday nights each week! Lauren goes to bed by 7pm each night but Carmen is often awake later so Carmen gets to experience American Idol! This season, I really like Brooke White, Michael Johns, David Cook, Jason Castro, Carly Smithson and the cutie-pie David Archuleta. I thought Chikezie did a great job this week too! Usually I only really enjoy one or two singers each season but this season I like half of them!

A little girl named Brooke from New Zealand lost her battle to Sandhoff disease this week. Sandhoff is similar to Tay Sachs. The funeral is tomorrow (Friday) and she would have celebrated her 2nd birthday on Saturday. Please keep Brooke’s family in your prayers.

 

Sick, Sick, Sick

Today Dave was home sick, very sick. Lauren also spiked a fever again. So far Carmen is fine. I am doing ok although I am very tired. Tomorrow morning I am going to try to get them both in to see the doctor. Lauren had gotten so much better yesterday, no fever, and running around playing. I thought she had a 24 hour bug. Seems this is much worse.

Please keep us in your prayers!

 

Dave’s Car Wreck

I don’t think I wrote about Dave’s car accident last Wednesday. He was on his way to work and a car cut off a bunch of cars in front of him. As this happened, the lady beside Dave pulled in front of him and slammed on her brakes. Dave hit the back of her. He is fine, although a little sore for a couple of days. The Camry is not so fine and will need extensive front end work. It was an interesting morning because Dave called shortly before I was going to host a MOPS get-together and birthday party for my friend, Lori. Carmen was asleep and Lauren was at pre-school. I called my friend, Tatiana, and she rushed over to watch Carmen and heat up the food and let everyone in for the party while I went to pick up Dave! Thank you God for friends! And, thank you God that Dave wasn’t hurt. I don’t think I could handle anything happening to Dave right now. He gives me great stability during the storms of life. I freak out and fall apart and he is so relaxed and so confident and full of faith. I love you, Dave!

Speaking of Dave, I am very happy to say that Dave mailed his FINAL student loan payment today! Ten years of marriage this August and this is the first time ever that we have been student loan free! Hooray!

 

Seth Thomas was Born on Sunday

Congratulations to our friends, Kerri and Lee, for their new arrival! Seth Thomas was born on Sunday and joins big sister Corinne and big brother Drew.

 

Results of “Friend-Raiser”

I mentioned the “friend-raiser” that Ritha, Salih and Bianca hosted last week. Well, we got the total- $1100! Thank you so much! It meant so much to us that you did this for Carmen. Thank you again to Lucia and Rachinee who donated their profits. And, thank you to all of Ritha’s and Salih’s friends who generously donated.

 

Polly Pockets

Today Dave and Lauren were playing Polly Pockets and Carmen was on the floor next to them. Lauren loves to play like Carmen’s tummy is a big mountain and her dolls sit up on top of the mountain. Lauren thinks it is so funny when the big mountain moves and her dolls fall off! Carmen has a tummy that is very conducive to being a mountain! She is now wearing 3T/4T clothes!