Keep Moving Forward

A sitter!

Things are okay in the Dunlap house this week. We've had some good days and some bad days. Mike has been gone a lot the last week with various work outings which has been difficult for me. Dominic has been having a lot of seizures, which means not much sleep at night. I am not the same person when I only get 3 hours of sleep. I have to warn Mitchell that Mom is going to be crabby today. They upped Dominic's meds again, which seems like the only thing they can do when his seizures get worse until he has surgery. The date is set for July 5-7 for his 48-hour Video EEG in Detroit. Immediately following his discharge from EEG on the 7th he'll go to the PET center for his PET scan. I'm hoping that they get all the information they need and we can move the surgery process along. Dominic seems to make such great progress the few days he's seizure free. Then when they start up again, he's wiped out. Sunday he had 6 seizures in an hour and a half and Monday had 7 in two hours (of course at 2:30 am). So, they sort of set him back. I'm ready to be done with these seizures already! And then upping the meds makes him pretty tired for a few days as his body adjusts to the higher dose.

I have two teeth!

He finally got his SPIO (Stabilizing Pressure Input Orthosis) vest on Wednesday, so he's in that full time. We can already tell a difference. He is much sturdier and moves a lot more. He gets his helmet next week, along with his leg stabilizers. These are braces (or "magic shoes" as we call them) that he's worn during therapy. He doesn't put weight on his legs, so these help support him as he's learning to stand. He is going to start "treadmill training" next week. Should be interesting! My father says he's going to look like a hockey goalie when he has all his gear on!

In his sweet unitard (SPIO vest)

At PT in his "magic shoes"

This blog has been great for me, definitely a wonderful personal outlet. The past week has been really difficult for me. Between the seizures, lack of sleep, Mike being gone, three of my close friends moving away and Mitchell constantly using his underwear as the toilet - I thought I had hit my breaking point. Then I looked back at the post I just made last week about blessings. It's amazing how things can change so much in a week. And yet it has been so helpful to read posts like that when I'm having a rough week. Having faith is hard. You have to have just as strong a faith when things suck as you do when things are going well. In the midst of our sleepless nights and the tears we cry,  I have to remind myself they are God's mercies in disguise. Some days it's more of me repeating that to myself than actually feeling that way. But I know that God never gives us more than we can handle. He gives us the strength to get through each day, even if it's only by the skin of my teeth :o)

Blessings

I don't really anything new to post today regarding Dominic. He's doing pretty much the same. We're still waiting to see if the Zonegran helps with the seizures. Again, the hard part is that he has most at night and I usually only catch them when I'm checking on him or can sort of hear him on the monitor. So, he's probably having more than we know about. I'm anxious for the 48-hour EEG to know for sure. I also heard from Dr. Chugani and we are going to begin testing. His office is scheduling a PET scan and an extended EEG in which case he'll have to be weaned of all his meds first. I think they're going to try to schedule that pretty quick to get things going. I don't know how I feel about this. The best word I can use is 'anxious'. I'm anxious to get moving because if the surgery will control the seizures, the sooner the better. But at the same time, I'm extremely anxious and nervous about cutting out his brain. I want to make sure we have the absolute best surgeons. I'm anxious that he'll lose function since he has been making such great progress, despite the continued seizures. That would devastate me.

I'm just anxious in general. Which leads me to my next point. A dear friend of ours shared a song with us they heard in church yesterday and it just hit me. It's called "Blessings" by Laura Story. The lyrics are the cries of my heart and when I heard it, it felt like it had been written for us. While the song talks about suffering and hard times, what struck me the most is when she says "what if trials of this life are your mercies in disguise". So often I find myself asking God why we continue to have trials and suffering. Why he won't just end all of this and heal Dominic. But when I stop and look at Dominic, I see how many miracles God has done and that through these hard times we see His mercies and blessings. This song was just such a great reminder that through suffering God reveals himself more to us and uses those times to show us His unfailing love. Enjoy!




Blessings
By Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Rockin' and a Rollin'

Not much has changed since last week except that Dominic is officially rolling over! He had been rolling occasionally when enticed by a toy at PT, but not consistently. He probably rolled on his own about 10-12 times today. I finally caught it on video, excuse the talking in the background. Sometimes I forget my camera has a microphone :o) The first video is an attempt, of which there were many. You can see what a stinker he is, as he sticks his tongue out at me. The second is him finally rolling. You can see how excited he gets (notice the leg kick)!





In other news, I have been emailing back and forth with Dr. Chugani about getting the surgery process started. Dominic has been on Zonegran for over a week and has had seizures the last three days. It can take a full two weeks to know whether or not it's working, but it's not a great sign that he's on 4 seizure meds and still having seizures. So, Dr. Chugani thinks it's best to start scheduling all the testing that needs to be done. I'm curious to see how long this process takes and wondering when he'll actually have surgery. I'm also looking into making a trip to the Cleveland Clinic or UCLA for a second opinion.

Last week we lowered his Triliptel and started him on Zantac and the vomiting has stopped, which is great news. We're sort of assuming that his low sodium levels were causing the vomiting, so lowering the Triliptel seems to have solved the problem. We have also started him on Zyrtec, as he has pretty bad allergies which have kept him up the past few nights. I keep wondering if I will ever sleep through the night again. Between Dominic up with seizures or allergies and Mitchell up having to go potty or having bad dreams (every night!), Mike and I never get much rest. But, what do they say? You can sleep when you're dead? Great, can't wait for that...