Our Family

Evangeline turned 5 months on Monday 12/17. She is very active and just soaking up all her surroundings. She is almost rolling over on her own...we are still working on that. She loves to blow rasberries or spit. She thinks it is so funny and of course Dad doesn't like it at all, but Grandma thinks it is very funny especially when she tries to do it with rice cereal in her mouth. Yes, we are eating rice cereal now. We have been doing that for almost 2 weeks now, just at night and she really seems to like it.

Pediatrician checkup went well. She is doing all the things she needs to be doing. She is 12lbs 13oz and 24" about the 45th percentile. She got all those shots. She seemed a little more fussy and sore, but she did great.

MCAD checkup went well. She is allowed to go 7 hours now without eating and she is taking a little more carnitine at each time. I really like our doctor...it is worth the drive to Ft. Worth. She is doing really great.

Both doctors said she could start rice cereal anytime, but I don't think she is ready at all. We are going to wait on that.

She laughed out loud for the first time on her 4 month b-day. James was bathing her and as he was drying her off she laughed. She has also laughed for grandma knorr. She however has not laughed for mom. Figures...I better get used to it.

Halloween was fun. We went over to Aunt Chris and Uncle Johnny's house for dinner. I met the beautiful Amanda (Aunt Chris's best friend) for the first time. I really like her. We got to pass out candy to the cute kids in the neighborhood. I dressed like a 'punkin.'

I don't know how much there is to add to the video. We had the opportunity to participate in a dedication service at the church and felt it was important to commit to raising Evey with the love of God, and committing to being a good example for her of walking with the Lord. We're sorry it couldn't have been scheduled where everyone could make it, but we hope you enjoy the video and feel like you were there. We know you would have been if you could. One of the most overwhelming things about the experience was seeing and knowing how much family and friend support Evey will have growing up. We are truly blessed.

Evangeline is doing really well. We started our new schedule this week. She is at Mary's from 8 to 3, while I am working. We are still trying to get in some sort of routine, but I imagine that will take a little bit and I am trying not to freak out. (I did a little last night). Her legs are really strong, but we are still working on tummy time...arm strength. She really doesn't like it...I think it is cause she can't see what is going on. She doesn't want to miss anything. Here are some pictures from the last month.

Even a video for everyone to see??


I'm starting to enjoy this tummy time. I get to work on my upper body strength and pushing up and before you know it I'll be mobile. Hope you're ready Mom and Dad!

Well Monday was a long day, but Evey did awesome. She was off to day care at 8am with Daddy. Mommy picked her up at noon. She is going to Mary's Little Lambs, located here in Frisco only about 10 minutes from the house. It is a home day care. They specialize in little ones so she is not around any other children older than 18 months, which is good. They tell me she is very good and sweet, of course I know this already. Then, I started bible study at Irving Bible Church so Evey went to the kids klub there. The ladies were very nice. Once again she did great, it was mommy that was nervous and worried.

Mondays will be long days for both us. I think I am doing pretty good with her going to day care. I don't like it but she seems to do fine. We are just trying to get into some kind of routine/schedule.

What she is up to at home: She is smiling a lot lately...so precious. She rolled over Sunday morning from her tummy to her back. I put her down for tummy time, looked back over she was on her side then looked back again and she was on her back...happy as can be. Bath time is probably her favorite time of the day, especially when mommy AND daddy bath her. Of course, grandma bath time runs a close second.

In January of 2007, Texas began the expanded newborn screening tests. Evangeline’s test came back abnormal so we went to see a geneticist for further testing…same results. She was diagnosed with MCAD Deficiency (medium-chain acyl-coenzyme A dehydrogenase deficiency).

Friday 8/24 we met with a geneticist who specializes in metabolic disorders at Cooks Children’s in Ft. Worth, she also has a nutritionist on staff that met with us. Not sure what I was expecting from this meeting, but I was impressed. They presented us with binder of information and resources and there was an agenda for the meeting.

MCAD is an autosomal recessive disorder of beta-oxidation of fatty acids, which occurs in approximately 1 in 20,000 live births. This is genetic…James and I are both carriers for the recessive gene…so she had a 25% chance of getting both recessive genes. One of each of our parents passed us the recessive gene and so on and so forth.

Basically, it is very difficult for her to processes medium chain fats into energy. To help her with this, she will supplement her diet the rest of her life with L-Carnitine. She will basically have a normal life and shouldn’t have to avoid any activities or foods or anything. She just will overall need to eat a little healthier diet and she will need to make sure she doesn’t go very long without food. When your body goes without food for a certain number of hours, it shifts mode into using stored energy (fats) for energy. Since she has difficulty converting this type of stored energy into glucose, her body would be in a situation where her brain doesn’t have enough to keep functioning.

Websites

http://www.fodsupport.org/mcad.htm

http://www.emedicine.com/ped/topic1392.htm