Starting at Goalie...

Dominic at Goalie

Dominic is looking more and more like a hockey goalie after this week. He finally got his helmet, along with his leg stabilizers. He's not a huge fan of either, but he's being a good sport about it. We're hoping he won't have to wear the helmet more than a few months. He only has to wear the leg stabilizers a few times a day and at therapy. He should be getting his arm stabilizer in the next couple weeks too. So pretty much he will be covered head to toe in orthoses with the exception of his left arm. The poor kid :o(

Dominic has also continued to have seizures, despite upping his meds. On Wednesday, I was on the phone with Neurology at midnight because he had had 8 seizures in two hours. He has been holding his breath and vomiting when he has seizures which has really started to freak us out. I barley sleep because I'm worried he'll choke on his vomit or stop breathing altogether. The nurse suggested I make sure I'm comfortable with infant CPR. No biggie, no reason to worry, right? I really, really hope it never gets so bad that I need to give my seizing baby CPR. Just another reason I'm anxious to get to Detroit and to get this process moving. Fortunately, we were very lucky that Dominic had a good couple days so Mike and I could get away for our anniversary for a night. We were nervous about leaving him overnight with my parents, not only because of the seizures, but also because of the stress of giving him 8 meds twice a day, the helmet, the SPIO vest etc. It's quite a bit of work looking after this little guy! But as it turned out, Dominic didn't have one seizure while we were gone, praise God! We definitely needed a night away. It was such a wonderful gift to be able to relax and enjoy time just the two of us, without the stress of our daily life.

Treadmill Training at PT

Working on Standing

Dominic, Mitchell and I are headed to Detroit Tuesday morning. Mike needs to stay home and work, so my wonderful sister-in-law is taking Mitchell for the three days we're in the hospital. And my mother-in-law, bless her heart, is going to stay with me in the hospital the entire time. I heard from Dr. Chugani on Friday and it sounds like we'll get the results from the VEEG and PET immediately. Depending on the results, he will review them and put together a surgical plan. There is still a part of me that worries that Dr. Chugani will say that surgery is not going to be an option. Even though he has definitely been diagnosed with Cortical Dysplasia and the seizures have always consistently been complex or simple partials, which indicates they come from only the left side. But I suppose there is always a chance that surgery would not fix the problem. But we continue to pray ferociously that surgery will be the cure to his epilepsy and heal him of the seizures. In the meantime, we are trying to get through each day with a smile on our faces.

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...

Brain Surgery, What???

Yes, we have been talking brain surgery with Dr. Arndt and Dr. Chugani. Dominic has been having seizures for weeks now. Sometimes a few a day, sometimes just one. The majority of them are at night, so there is a chance he could be having even more and we just don't know it. The last few weeks have been nuts. Besides the seizures, Dominic has been projectile vomiting every few days. He's currently on eight medications, so it's hard to know if it's one of them upsetting his stomach or something else. Over the past weekend, he was very lethargic and had some new sort of seizure. He also threw up Friday and Sunday. The neuro on call thought his sodium levels could have been too low, which is a side effect of Triliptel (one of his 4 seizures meds). We spent the afternoon in the ER getting a bunch of blood work done. Nothing came back alarming, although his sodium levels were low. The advice of the ER doctor was to give him pretzels to chew on...awesome. Luckily, we had an appointment with Dr. Arndt the next day and were able to sit down and try to figure out what's going on. Because his sodium levels were on the low side, we decided to lower his Triliptel and add Zonegran, another seizure med (similar to Topamax). He also let us know that he reviewed the MRI scans from Detroit and the swelling around his brain stem (which they initially thought was a brain stem stroke) was totally gone! Amazing news and yet another miracle. That pretty much proved the theory that the Vigabatrin caused the swelling and it was indeed reversible. Praise the Lord!

An official thumb sucker!

Dr. Arndt was thrilled to see how well Dominic is doing developmentally and because of that, he feels that if the Zonegran doesn't stop the seizures, we should pursue surgery right away. If the Zonegran doesn't control the seizures, this would be the fourth seizure med that failed. Usually failing 2-3 qualifies you for surgery, among other things. So, the brain surgery option is becoming very real. Dr. Arndt feels that the sooner the surgery is done, the better chance he has developmentally and he wants to preserve the progress he's made. The road to surgery is long - we would start with a 48 hour EEG (which we have scheduled on July 5th), then do a PET scan and an MRI. Also, depending on what they find on the extended EEG, there is a chance they would have to do an EEG where they remove part of the skull and put the electrodes directly onto the brain. This is the best way to find the exact location of the seizures. We're hoping we don't have to do that, but you never know. We were hoping to not have to discuss brain surgery either!

Starting to sit up

We had an ultrasound and saw the Urologist on Tuesday and got some good news. His kidney stones are about half the size they were. This is probably a combination of taking him off the Topamax and putting him on Bicitra. So, at this point no need to remove the stones and we'll go back in 6 months for another ultrasound. One thing to check off the list!

Below is a fun video of Dominic "talking". He's found his voice and wants everyone to know!

Using that right arm more and more

Besides the seizures and vomiting, Dominic is doing pretty well. He's happy and making progress in OT and PT. He can even "sit up" for a few seconds on his own before he topples :o) It's crazy to think that we may soon be pursuing brain surgery! Mike and I aren't sure how we feel about it, it's not like just getting your tonsils out, it's removing part of his brain and hoping the part that is left will resume the functions of the part you removed. There is a chance he could lose some motor function, but they won't really have a good idea until they know where and how much they have to remove. Because he has cortical dysplasia, where one side of the brain is malformed, there is a very low chance he will just grow out of seizures as he gets older. The surgery is the best option and will give him the best chance at development. He also wouldn't have to be on four seizure meds. There is an 80-90% success rate and most kids only have to be on one seizure med, if any at all. That would be incredible! I am so curious to know what sort of kid he'd be if he hadn't been doped up on meds since he was two months old. But it's also very scary. This is something we'll have to pray long and hard about and will probably go to Cleveland for a second opinion, just to make sure this is the best decision. Yet we know that God has a plan for this sweet little baby and that all we have to do is trust in Him. He will take care of the rest.

Some quiet time with Mom

Seizures, Seizures Go Away

And don't come back another day! Dominic has pretty consistently had seizures every day for the past 10 days. Mike and I are getting pretty concerned as they've upped his meds three times in those 10 days and he still continues to have seizures. And only one of those ten days has he had them during the day. They are mostly at night. So, he is back to sleeping in our room, which means we're up several times a night, each time he has a seizure. Dr. Arndt was gone all last week at a conference so I never heard from him. The other doctors in the clinic didn't want to add a new med without consulting with Arndt, so they just upped his current ones, which obviously isn't working. I'm anxious to speak with Dr. Arndt on Monday and figure out what the heck is going on with Dominic. The seizures, while he's not having them all day long really take a lot out of him. Plus the higher doses of the meds make him really tired and lethargic. It seems to set him back in PT and OT, which is hard to see after all the progress he's made.

You know you're tired when you fall asleep jumping

So sleepy and lethargic :o(

The past few weeks have been so exhausting, draining and frustrating. On top of the seizures, Dominic has cut his first two teeth, which is always a joy. He also randomly threw up last Sunday and Tuesday. He doesn't seem sick so it makes me wonder if he's allergic to a certain food. Mike and I are at a loss as to what to do. We feel so helpless. We just keep praying that the seizures will stop and we'll figure out the right concoction of meds so that this kid could just cut a break already! God has never failed us before and we know he has his arms wrapped around Dominic right now. He'll get us through this and I have no doubt Dominic will get better. It's just hard to keep our spirits up in the meantime.

Will It Ever End?

There never seems to be any downtime in the Dunlap house! We're still in the midst of perfecting Mitchell's potty use, which makes going anywhere a super fun (that's me being sarcastic). On top of that, Mitchell picked up the hand-foot-mouth virus last week. He was pretty sick Thursday-Saturday. He's feeling better, but still wakes up during the night because his throat hurts. Dominic has also been up during the nights battling a nasty cold. Mom and Dad haven't gotten much sleep. On top of that, Mike caught the flu and has been sick the past few days. That leaves me to take care of all these boys!

Saturday we were in Detroit for Dominic's MRI at the Children's hospital. My wonderful in-laws accompanied me so I wasn't hanging out downtown Detroit by myself, while Mike took care of Mitchell. Everything went well, it just made for a really long day of driving and waiting. We haven't gotten the results yet, but should hear this week. I'm very interested to see if anything has changed since he's been off the Vigabatrin.

Waiting with Bampa for my MRI

The nurses were nice enough to leave my thumb out when starting the IV

Going in for the MRI

All done and waiting to wake up!

I've learned there is no rest for the weary! After a long Saturday and a Sunday with all my boys sick, I was hoping to make an early dinner and all go to bed. Nope! I was using my brand new mandolin slicer to make sweet potato chips and it got stuck, so I pushed a little harder and OUCH - lost the tip of my finger. It was pretty bad so we ended up in the ER. Fortunately the tip will grow back, eventually, but they had to cauterize it to stop the bleeding. So, it hurts like a you-know-what and looks pretty nasty. Plus I look really cool with a big bandaged finger.

This morning at 1:00 am Mike and I awoke to Dominic screaming. He was having a seizure. He had another one at 4:00, 5:00, 6:00 and 7:00 am as well. Not sure what this means. He has been exposed to a lot of illness, but he's supposed to be on enough seizure meds to protect him from seizures, even when he gets sick. We gave him a Clonazepam and called the neuro office; we're just waiting to hear back.

So, like I said, no rest for the weary! The past couple mornings I've had to beg God for the strength and patience to get through the day. Sick kids + potty training + throbbing finger + seizing baby + no sleep = one very tired, worn out and cranky mama :o( Mike says I need to make time for myself to stay sane, but how do you make time for yourself when there aren't even enough hours in the day to take care of everyone else? Still, I know that God never gives us more than we can handle. He must just be testing my limits this week :o)