Do you not know? Have you not heard?

The LORD is the everlasting God, the Creator of the ends of the earth.

He will not grow tired or weary, and his understanding no one can fathom.

He gives strength to the weary and increases the power of the weak.

Even youths grow tired and weary, and young men stumble and fall;

 but those who hope in the LORD will renew their strength.

They will soar on wings like eagles; they will run and not grow weary,

 they will walk and not be faint.

~ Isaiah 40:28-31

It’s been a rough couple of days since being home from the hospital.  Ryan did OK Thursday but yesterday we ended up in the ER again.  I gave him his noon tube feeding and he proceeded to projectile vomit, cough and gasp for air immediately after I was done.  He coughed quite a bit for the next twenty minutes or so, and after talking to the PA, we took him in for xrays.  He had abdominal and chest xrays and the ER doctor said everything looked fine, sending us home with a script for Zofran for nausea.  I called our pediatrician and talked to him on the phone; he looked at the xrays and said they looked OK to him too.  So we are taking it very easy with the fluids but are having a difficult time because his stomach does not seem to want to digest anything.  Last night I gave him just 2 ounces of pedialyte and two hours later, I got that same 2 ounces right back out.  Why his stomach is not emptying right I don’t know.  So now we are giving him 2 ounces of fluid every two hours and so far he has kept that down.  Unfortunately I’m not sure how long he can maintain this without either tolerating more fluids or ending up back in the hospital for IV fluids again.  He is happy and does not appear to be in pain, but this morning he is quite weak.  He still has not eaten by mouth for a week and has not stooled yet either.  It’s disheartening to keep worrying we will end up in the hospital again if things don’t improve, but we can’t let him get dehydrated again either because that causes all kinds of other problems we don’t need.

I don’t know if I said earlier or not, but I rescheduled Ryan’s wheelchair fitting (a 2 hr long appt) for December 15th which really isn’t too much of a delay.  It will be several months before we would get it anyway by the time they get insurance approval then have it made.  I simply can’t carry him anymore and can’t get him in and out of a grocery cart because he is so big.  I don’t need permanent back problems from Ryan; I already have back issues that come and go from lifting him so much.  I think the wheelchair will help us tremendously because Ryan can’t walk long distances and it’s impossible to shop or go to games, etc, without something for him to sit in.  His special needs jogger stroller has been a godsend but he’s getting too big for that too.

The appointment with the neurosurgeon was rescheduled for January 3rd which is the earliest I could get in.  I don’t know how long that will prolong his surgery but we can’t get him to surgery until February anyway because Travis doesn’t have any vacation until then with his new job.  And I just used the rest of my time bank this week with Ryan in the hospital so I am also out.  Hopefully I can get that built back up and at least have on week to take off before Ryan heads back to the OR.  It’s been impossible to get my time bank built up with him.  I’ve taken time off just for hospitalizations quite a bit – two weeks last November, a couple of days in January when he was hospitalized for seizures, a few days in June when he had surgery for his stimulator placement, a week for this hospitalization.  At least I have a job that is flexible so I can move my days around.  I am blessed to be able to work 24 hrs a day, 7 days a week so I have flexibility which helps so much. And of course I took a few days off when I went to the beach with my sweet friend Becky in September (now that was heaven!).  Wish I could go back.

I love the above verse especially on days like today when I feel so tired and weary. I try to stay so strong and always remind myself that God didn’t give me one bit more than I am able to handle with His strength.  But some days it’s just hard.  And today is one of those days.  I grieve over so many of the circumstances that have occurred in the past eight years, many with Ryan, some with other life changing things that have happened, and others simply being the way life goes.  I know God has a perfect plan for us but I’d be lying if I said I am always faithful in believing it.  Thankfully He never grows tired and weary like I do.  It’s a journey and I’m just trying to do my best to make every day count and do what I’m suppose to be doing here.

When I stand before God at the end of my life,

I would hope that I would not have a single bit of talent left and could say,

 “I used everything you gave me.”

~ Erma Bombeck