Your Hands

"When my world is shaking, heaven stands

When my heart is breaking

I never leave your hands"

The last week has been a whirlwind. We were released from the hospital late Friday afternoon and enjoyed a nice weekend at home as a family. We put Dominic in his excersaucer for the first time (see pic below). Since he can't totally hold his head up, we had to put a lot of pillows and blankets around him, but he seemed to like it. I'm hoping this encourages him to put weight on his legs and will strengthen them. It was so nice to just hang out as a family, we even got out on Saturday for lunch. I'm hoping my days of being a hermit are over.

Out lunch with the fam

Monday I spoke with Neurology and they said that the kidney stones were most likely caused by Topamax, which is one of the anti-seizure meds he's on. So, we are currently in the process of weaning Topamax and starting Keppra. The most common side effect of Keppra is irritability...great. I thought that was behind us! They also want him to see a Nephrologist and Urologist about the stones to see what they want to do about it. I guess they are pretty big and not sure if he can pass them. Yesterday, Dominic had an EEG in the morning and then got a call from Neuro asking us to head to the ER for a CT scan. Dominic has not been using his right arm and they think it's Todd's Paralysis, which is temporary paralysis after the long seizure he had. However, that should have cleared up within 24 hours. When we got the results back yesterday, they said everything on the left side of the brain (which would affect his right arm) was normal, but they found what looks like a hematoma on the right side. I'm told it's like a bruise on the brain that is usually caused by some kind of trauma or injury, which he hasn't had. So, they aren't sure where it came from. When we saw the Pediatrician today, he ordered some blood work to see if he may have a blood disease like Hemophilia, which could cause  the bleeding. In the meantime, Neurology is scheduling an MRI to look into it further.

Notice all the pillows and padding!

Back in the ER for a CT

This poor baby, it just seems like one thing after the other. We head to the Urologist on Monday to see about the kidney stones and he then has his diagnostic BAER on Wednesday. Hopefully the BAER can give us a better answer as to whether he has hearing loss or not.  He can't eat for 6 hours before and has to be sedated, so that should be a fun morning :o) I am trying so hard to take each day as it comes, but it just seems like things keep coming and will never settle down. Something new seems to pop up every week and I have spent way more time in the hospital and doctor's offices than I want over the past few weeks. There is this song that I love called "Your Hands" and every time I listen to it, besides bawling my eyes out, it reminds me that God is holding Dominic, and all of us, in the plam of His hands, and one day He will set all things right. One day there will be no seizures, no needles, no tests, no medicines, and no pain. In the meantime, He will give us the strength to get through all this.


I have unanswered prayers
I have trouble I wish wasn’t there
And I have asked a thousand ways
That you would take my pain away
You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

When you walked upon the earth
You healed the broken, lost and hurt
I know you hate to see me cry
One day you will set all things right
Yeah, one day you will set all things right

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

Your hands that shaped the world
Are holding me
They hold me still

- JJ Heller Your Hands