It is a foggy day here in Lincoln. That is what my brain feels like....like I am in a fog. I thought I would give an update from yesterday. I am never sure who checks in with us but just wanted I thought an update would be good. So, I was on the phone most of the morning yesterday trying to figure out what to do. She stopped crying about 11am or and that hung on until about 10:30p-2:30a she cried. It drains every bit of energy from me to hear her cry and to be able to do nothing about it. Since my brain is not working well this morning. Thankful Julie is here to help. Regan is in a good mood/not crying this morning. She is bathing her and giving her a breathing treatment. We will see where that leaves her. We are just going moment to moment. I guess you could say we are traveling slow down the road today...the fog makes it hard to see in the distance but sometimes just seeing what is right ahead of you will do.
Some things I am praising the Almighty for:
- Julie's ministry to Regan and myself.
- My friends who help with Ryder and Rylee when Regan is not doing well. They always do whatever and usually say "could I also do this?" I love them.
- Brian, in an act of desperation, emailed and phoned messaged three of the top mitocondrial doctors in the nation yesterday. One called back last night at 7:30p. He spoke with Brian on the phone for about 20 min. WOW! And it happens to be the guy Brian respects most. They talked about Regan and different issues we are faced with and what his advise would be. He knows Mito disease and he is the best patient care/mito doctor we have heard of.
- Thankful for Ryder and Rylee. Ryder said yesterday, "Mom I have to tell you that I did worry yesterday at school but I tried not to worry too much." I should try that sometime...not worrying too much. It sounds like something Jesus might say.
- I'm thankful for this picture of Regan because it is a source of light for me today. I hope it is a source for you to. This was taken on Dec. 26th driving down the road on a clear sunny day. What a smile!
- I am thankful for Brian who can't make Regan better but keeps me from going of th deep end.
- I am thankful for Jesus who renews me even when I don't feel renewed.
2 comments:
We are so grateful that you can manage to find a minute or two for updates though this blog. It makes it easier to refrain from picking up the phone. Checking my email is now second to the Route 5 info. I hope the weekend will have some rest for all of you. Our hearts are heavy with you, but we also remain thankful that God's work isn't confined to 8-5.
I am glad to know you are checking. I never know who is reading it so I like to know when people are "in the know." I just called my mom this morning to try and fill her in because I have been too drained to call. She was at work so I filled my dad in. We love you very much!
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