Today is the first day of the rest of my life…and that feels good.  Re-entry has been great.  Lydia had a very good week and Forth of July.  She has jumped right into a normal nighttime schedule of sleeping and is being entertained by her brothers.  She is taking her bottle more and more.  I hope to get the feeding tube out soon.  I am giving most of her meds by mouth to motivate our doctors to know that she doesn’t need it for her medicine.  By the way, you would be shocked to see how many medications she takes AND that she is taking them like a pro.  It takes me close to an hour in the morning to prepare them and administer them to her.

So if you would like to hear a basic schedule of the day it goes like this:

8AM Meds and add formula to feeding tube

8:30AM More meds

Noon More meds and add formula to feeding tube

2PM More meds

4PM More meds, disconnect feeding tube (Lydia is free of tubes for 4 hours!!!)

8PM Hang her IV Fluids, hang her feeding tube, and more meds

10PM Disconnect her IV fluids, flush her line, and more meds, add formula to feeding tube

2AM Add formula to feeding tube

6AM More meds, add formula to feeding tube

And back to 8AM

As I noted earlier, Lydia gets bottles on demand around the clock.  She also is required to have her temperature taken twice a day and receive a bath.

As you can imagine I am quite exhausted a lot of the time, but being with my family really lifts my spirits.

It is all worth it.  Knowing that Lydia is on the road to recovery is HUGE.  Most of her medicine is to get the new marrow to be content with Lydia’s body.  And the rest of the medicine is in response to the side affects of the anti-rejection medicine.  Many of these medications could be stopped in the not-so-far-off future.

Today I was struggling with thoughts of possible long term side effects Lydia may be left with.  I feel really blessed and have peace of Lydia’s remission, but thoughts of side effects bounced around in my brain.  I questioned all the choices I made about her treatment and was afraid.  Immediately I thought “He gently leads those who are with young” and felt much better.  God is in control.  I have to give in and give up all of my control of the situation at hand.  

OK, I have a stream of consciousness starting here, so connect the dots if you can.

So, yesterday afternoon I was trying to take a nap, all the while thinking of everything that needed to be done around the apartment and all the things that my family was currently doing.  I wanted to be spending time doing anything other than napping, but I really needed a nap.  I started to think about how a lot of times I have to just give up and fall asleep.  I rarely like to give in to sleep, but it is one of my favorite things to do!  Then I thought about faith.  Sometimes, I just have to give in and believe God.  I want to believe Him, but I get caught up in circumstances (especially the little ones, AKA ankle biters).  That is when I realized how giving up control and choosing to trust Him, well, it hurts.  But when I do, it feels great…peace like a river.  

Lydia is in remission.  God is so much bigger than cancer and He is so much bigger than side effects.  Lydia is in His hands and I will continue to go where He leads.  

Thank you for your continued prayers.  I am forever thankful.

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