We had a very busy week. New York Grandma and Grandpa came for a visit which is always an exciting happening in our home. The Prince and Princess dolls have many adventures when Grandpa is in the house! Grandma, Grandpa, Lauren, Carmen and I went to the Dutch Market and had lunch and did some shopping. Grandma introduced Lauren to chocolate truffles and Lauren was quite impressed!

A friend, Claudia, came over on Wednesday and worked on a school project for one of her Early Childhood Education classes. Claudia brought craft materials and observed Lauren building a castle, people, flags and a horse. Lauren had a blast! Monica (Hospice volunteer) also came over on Wednesday to help out. I worked on cleaning the bathrooms and Monica vacuumed! Thank you Monica!

Carmen’s seizures are increasing in number and intensity and duration. She now has a pulse oximeter so we are able to monitor her heart rate and oxygen levels. During the seizures, Carmen’s levels drop for the duration of the seizures- about 3 minutes or so. I am glad that Carmen’s neurologist appointment is this Wednesday.

Carmen had a follow-up GI appointment on Thursday and her G-tube looks good. We are now giving her 600 calories per day. She started out at 800 calories per day but gained 3.5 lbs. in two months so hopefully 600 will be the right amount for her. Carmen gets 12 hour night feeds and 3 hour nap feeds and then water flushes various times throughout the day. She has more time off the feeding pump now and pretty much is only fed while asleep. This gives us a little more freedom to move her around.

One of Dave’s former coworkers sent Zoobie Pets for the girls. Zoobies are the cutest pillow animals that unzip into a blanket. Lauren got a hippopotamus and Carmen got a giraffe. I can see why Zoobies are very popular! Thanks Mike!

A few weeks ago, Rachinee, a Cookie Lee consultant,(and mom of 5 and wife to Dave and MOPS coordinator and decorator of all things at the church and a very wonderful friend, etc!) held a fundraiser (“friend-raiser”) for Carmen. The total came in and Rachinee raised enough to pay for our trip to Tampa for the NTSAD annual family conference- $1500! What a wonderful blessing!

Add a Comment »

Happy 18th Birthday Uncle Micah! It is hard to believe that the little boy who came to visit us at LeTourneau and stayed in Dave’s dorm room is now EIGHTEEN! Hope you still aren’t eating Fruit Loops with Big Red soda!

Add a Comment »

Happy 19 Month Birthday Princess Carmen! We love you very much. May you feel loved and cherished this month.

Add a Comment »

Happy Valentine’s Day (a day late)! We went to a Valentine’s Banquet at our church last night. We kept Carmen with us and she stayed awake from 6:45pm-10:30pm. Carmen’s regular bedtime is around 7:30pm so this was quite amazing for Carmen! We had a yummy dinner (crab cakes) and listened to a wonderful violinist, Jaime Jorge. When we got home, I told Carmen’s nurse that I expected Carmen to sleep like a rock since she was so tired. Next morning, the nurse told Dave that Carmen stayed awake until 3:30am! I guess the Valentine’s Banquet was quite exciting for Carmen!

Carmen’s seizures are increasing. Today she had two separate episodes of repeated seizures in which her arms and legs flew up. Both times, she cried after the five minutes or so of seizures. She sees her neurologist next week. Seizures are part of this disease but I need an idea of what to expect and what can and cannot be controlled.

Carmen is almost 19 months old and I thought I would describe what Carmen is like at this point. First, Carmen is very cuddly. Holding her is like holding a 27 lb. beanie baby; she melts into you. She is immobile but she does move her arms and legs, very slow, tiny movements. If I strap her into a reclined chair, she sits there until I move her to another spot. For the most part, Carmen is very content. The month prior to her G-tube surgery, she did not make one sound except to cry when we inserted the NG tube into her nose. She has cried some in the past couple of weeks since her surgery, mostly from gas pains. Maybe once per week, she will smile. We don’t see much response from her but she knows when we are next to her. If we make noise, she will look up. Carmen has very few purposeful movements but I did see her trying to touch her tummy tube shortly after it was put in. When I sit and hold Carmen, she is perfectly still and looks so very content and peaceful.

This week, a very sweet little boy and his mom came for a visit. I am sad as the little boy has recently been diagnosed with GM1-Gangliosidosis. To his mom: if you are reading this, please know that we are praying for your son and your family and I am here for you.

Tomorrow, I’m going to a Women’s Breakfast at church. Childcare is provided so I decided to take Lauren so Dave and Carmen can have some Daddy-Daughter time. I wonder how many Andy Stanley DVDs Carmen will watch with Daddy?!

Add a Comment »

Carmen had her surgery one week ago today and is doing fairly well. She does have fussy times during the day (totally uncharacteristic of her) so we continue giving her Tylenol/Motrin. It’s hard to see Carmen uncomfortable and we do our best to figure out what could be bothering her.

Lauren has been saying some cute stuff lately:

In preschool, Lauren is learning the 10 commandments and they are up to Honor Your Father and Mother.

Lauren: Mom, you are a wonderful cook.
Me: Thank you, Lauren!
Lauren: Mrs. Ellis said I can honor my mother by telling her she is a wonderful cook at dinnertime.

This comment is funny because Lauren is the most picky eater ever and I think she was having warmed up left-over Super Bowl pizza and grapes!

Lauren is all into playing “getting married” with her dolls. I officiate over weddings everyday! Couple of days ago I made a comment that got a very teenage reaction from Lauren.

Me: I think you should marry TJ when you grow up!
Lauren: (rolls eyes) Whatever.

Now, TJ is a wonderful friend and Lauren loves to play with him but he’s a year younger than Lauren. Maybe being the older woman won’t bother Lauren in 20 years! Ha!

Switching gears, some of you know that we have to move out of our current home in July when our landlords move back in. We moved into this townhouse in August because we really wanted to be near our church (1.75 miles away). Lauren goes to preschool at our church, Church of the Redeemer, and we plan for her to attend elementary there too. Lauren also goes to Awana and I am part of MOPS. We felt that being as close as possible to our support system was very, very important while caring for Carmen. Now we are faced with another move and have decisions to make. My mother-in-law and I found a beautiful home with a main floor bedroom and bathroom (just perfect for Carmen) near us. Our current townhouse has stairs all over the place and it is getting dangerous. I was carrying Carmen up the stairs recently and lost my balance. I caught myself with my knee. Carmen’s feeding tube was under my knee and she cried and cried and I felt AWFUL! So, our two huge goals are 1) to stay near our church and 2) to find a place that doesn’t involve carrying Carmen up and down stairs. Lots would have to happen for us to buy or rent such a home so we ask for prayers. Around here, most everything has stairs (lots of multi-level homes) so I was excited to find the house with the main floor bed and bath. We are asking God to make it very clear where we are to live. I sure hope that this move is the last one for a very long time. It would be nice to not have that stress right now.

Add a Comment »

We are home! Carmen had her G-tube (feeding tube in her tummy) surgery on Thursday and did so well that we got to come home today. Carmen was in a lot of pain both Thursday and Friday and was given some extra morphine. The pain wasn’t subsiding and we finally figured out it was constipation. Once that was resolved, she was her normal content self!

Based on just a couple of days using the G-tube, I think it is much more convenient than the NG tube. And, I’ve only spilt her stomach contents all over once! Got to remember to clamp the tube before opening!

Thank you for all your prayers. This hospital stay really wasn’t bad and we had a very nice, quiet roommate (always a huge prayer). Huge thanks to the MOPS moms for bringing meals.

Dave’s parents are here for a few days and Lauren is having great fun playing “prince and princess” with them. Before Carmen’s surgery, I went to the Disney Store and found cloth Prince and Princess dolls on sale for $2.00 each. The Prince and Princess have gotten married many times this week!

Add a Comment »