Monday, May 17, 2010

No Appointment Yet

I have a couple of loaves of bread cooking in the oven, so I have a few minutes to kill before they are ready. I wanted to fill you all in on what has been happening the last couple of days with Rowe.

Rowe went a few days this week without any blinking episodes followed by good nights. Yesterday afternoon around 3:00, he began blinking off and on throughout the night. He started getting really uncomfortable and hard to console around 8:30 last night, so Lee rocked him until about 1:00 a.m. Lee brought him into our room, and put him in the bed with me, then he went and got into the bed in Rowe's room. At 2:15 a.m. it started all over again. Rowe was confused, fussing, and kicking. He would ask for something, and then get mad when I tried to give it to him. I tried rocking him, walking him, singing to him, everything with no luck. Lee woke up and Rowe immediately tried to get to him. Lee began rocking him again for another hour or longer. He brought him back to bed with me, and he slept until about 4:30. I was able to calm him down within 30 minutes this time without waking Lee. Rowe slept then until almost 8:00 this morning. What scares me is that the blinking episodes and his bad nights coexist. They must be related like the doctor believes, but honestly I don't want to believe he is right about these being seizures.

The nurse called me today and said that the specialist in Birmingham can not see him until OCTOBER! Those all caps are me yelling in my head. This is ridiculous. The Jackson specialist can't see him until August. I just hurt for the families who have children waiting to see these doctors with much worse health problems than Rowe. I can't imagine how much harder it is for them. As of right now, we are still keeping our June 1 appointment here in Columbus for his tests to be run. I just hate to have to do them again when we get to the specialist. That means Rowe will have to be sedated twice. Please pray that when the nurse calls me tomorrow about our appointment in Memphis, that it will be very soon. I am learning that the less control I have over all of this, means the more time I will be spending relying on God and prayer.

We both were so tired at work today, but I worry about Lee. He has such a physical job that can be dangerous at times. After work, he went to do a side job. He was running on adrenaline all day. Thankfully, I am giving exams this week and not trying to lecture or teach a new skill. Rowe was napping when I came home from school which meant NAP TIME FOR ME!!! When I woke up, Rowe was with Nana and Pops in the backyard, naked running round and jumping into his little pool. Only Rowe was naked, not Nana or Pops. Our backyard is not fenced in.

Rowe had a good day today, with less blinking. I spent most of the night baking for the week. I baked homemade biscuits, cinnamon rolls, banana nut muffins, and a couple loaves of bread. At this moment, Lee is sound asleep in Rowe's bed while Rowe is lying next to him playing.

The bread is ready now, and it is far past my preferred bed time, so I am about to go to bed relying on the Lord for rest. Thank you all for your prayers and encouragement!

3 comments:

The Wood Family said...

Praying for you!!!!

Addie Talley, Photographer said...

Celeste, I wish there was more I could say or do... I absolutely know that helpless waiting feeling - and it is exhausting just to have to do nothing.

Know that God loves you... specifically you as His daughter, and He loves Rowe and Lee as His children too... trust that He is working behind the scenes for what is best - even if we cant see it.

We love yall so much.

The Burks Family said...

Just wanted to let you know that Stephen and I are praying for ya'll. God's got a plan, we just have to be patient and let him work things out :)