Sunday, April 28, 2013

A little break!

We left Leah with our parents and we took a little break and went to Moab. Chad had a Dermatology conference so we tagged along.  We had a great time. It was fun to spend some active time with our kids. We went hiking and swimming.

Two years ago we took our four wheeler down there and had a blast. We were really missing it this trip. We sold it to a great family who's daughter also has a metabolic condition. We hope their family is creating some great memories with old blue.

This was our first time leaving Leah. It was quite the chore getting everything ready for her to stay with grandparents. She had a ton of luggage and I wrote out three pages of instructions on how to care for Leah. It was very stressful leaving her but we really needed the break. While we were away I got a glimpse of my old life, a very stress free life. It was hard to come back to reality but she is worth it. Plus, I really missed her!

 Leah got her stroller! We absolutely love it. Here's a cute picture of Lauryn's and Leah's beautiful nails.

Leah is doing well, no significant changes! Her legs aren't as stiff which is very nice for changing her diaper and holding her is easier because her legs will bend now. I had to take a picture of her legs so relaxed plus they finally have some fat on them. Yay!!!

She is a lot more alert, her eyes are moving around a lot more. We really like that. The one thing that is really sad is that Leah is throwing up almost every night, sometimes in the middle of the night which totally freaks us out. We have gone in to get her in the morning and she had thrown up sometime in the night. So scary because she aspirates so easy.

Her dosage of Dextromethorphan has sightly increased.  We haven't seen any real changes in Leah since she has started the drug. Chad and I got our blood drawn and sent out to Chicago. Dr. Filloux said it will probably take two weeks to get the results.

I have struggled to blog for the past couple weeks. This new diagnoses has brought on some new emotions. When I am emotional I can't think therefore I can't blog. Life is hard and I know we are all battling something in life. I have found that it's so important to find balance in life. I feel so much better when I have gotten lots of rest and I eat right and exercise daily. I also wish from the very beginning of this sickness with Leah that I got some kind of counseling. I still haven't gotten counseling and I think it's so important because we don't know what to do with all our emotions and sometimes these emotions come out at the wrong times. One day I will make that happen but for now my counseling is a good laugh with friends, a date with my husband, a massage and a diet coke. I totally tried to give that up on that last one but it's just not happenin'.

I try so hard to do this everyday!

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