The Blind Side

Another busy week in the Dunlap house. Fortunately, I was lucky enough to have my sister come up and visit for a few days before she starts another gruelling semester of law school. It was so great to hang out with her and she was such a help with the boys.

Dominic had his usual OT with Early On on Monday and this time she brought out another OT to observe along with a vision consultant. I was informed for the first time that Dominic is not only peripherally blind in his right eye, but also his left. This was news to me and something I had not heard before. She said he would have a difficult time walking and going down steps. But that he would have an especially hard time reading. I didn't take it to heart since this woman had never met him and was no neurologist or opthomoalogist. Unfortunately, she was right. We saw Dominic's Opthomologist on Wednesday and she confirmed the same thing. He lost his peripheral vision in BOTH eyes on his right side. Needless to say I was a little upset that no one had ever mentioned this to me before. She said we had probably been told by the neurosurgeon and neurologist, but that when we were told that he would lose his peripheral vision on the right side, it was implied that it was the right side in both eyes, not just one. The optic nerve from each side of the brain splits and is responsbile for different areas of vision in each eye. So, removing an entire hemisphere will remove vision that that side was responsible for. So, basically he can see fine when he looks straight ahead but if he tries to look to his right without turning his head, he will be totally blind. So, that's great. His opthamologist did remind me that this was a down side to the surgery, but that it had to be done to stop the seizures. Fortunately he will not know any different and will learn to compensate. I guess even though I know he's a little delayed, I thought that someday he would catch up and live a normal life like anyone else. I feel terrible for knowingly doing this to him, but I guess what choice did we have? If we didn't stop the seizures, he could have easily ended up a vegetable. I suppose it's the lesser of the two evils.

You can see where the optic nerve splits.  The blue is what was removed thus leaving Dominic blind on the right side of both eyes.

Here is Dominic during Early On last week. He LOVES this monkey Linda brings. His right arm is getting stronger each day and he can now support himself solely on his right arm and play with his left.

On a good note, we found out he doesn't need glasses! The last appointment we had with the opthomologist she was leaning toward glasses. But after dilating his eyes and a three hour office visit, she decided his eyes were correcting themselves and glasses weren't needed.

Dominic pretty much dominated the treadmill this week at PT. He is becoming quite a feisty little guy. He's learning to hit and hearing the word "NO" a lot more from me. He also puts up quite a fight when Robin is stretching him during therapy. But with that he's getting stronger and more mobile. He got his AFO on Friday and it should give him a little more support when he's standing/walking.

Dominic's AFO. Short enough that he can move around but gives just enough ankle support

The man eating breakfast rockin' his new footwear

Mike was supposed to be gone this weekend but with all the snow, he's staying around here. Which is a good thing, since I was layed up on the couch all day yesterday with the flu. Dominic may be getting more of a 'tude, but at least he entertained himself in his jumparoo for two hours yesterday so I could nap while Mitchell was at school. I'm definitely looking forward to a low-key weekend at home with my boys :o)

Very Happy Holidays

I haven't posted in awhile but I guess I haven't had a whole lot to say (which is a good thing) and we've been so busy with the holidays. We had a wonderful Christmas and New Years and were able to spend a lot of quality time with friends and family. I have some fun pics at the bottom! Now that we are officially done with 2011, we are hoping 2012 will be a much more relaxing, enjoyable, peaceful and healthier year. Mike and I both remember where we were a year ago - in the hospital starting ACTH treatment. So much has happened since then, I barely remember that time of our lives. We were in such a fog and just bogged down with worry, anxiety and fear. It's amazing to see what a different baby Dominic is now.

Speaking of the main man, he is doing great! He is always standing; assisted obviously. But when he's not standing he's rolling and spinning around trying to grab anything he can. He has gone from Dominic the baby to Dominic the toddler for sure (except he's not toddling yet). He's always grabbing and pulling at things, mostly my hair, earrings or glasses. You can tell he wants to move. When he's put into the crawling position, he rocks back and forth but isn't quite sure what to do. His PT and OT don't think he'll crawl but will go straight to walking. I can understand that. It takes a lot of effort from both legs and arms to crawl. But I am thinking he will do some sort of army, one-armed crawl. He doesn't like to sit still anymore.

He's been sort of a stinker lately. He's definitely starting to express himself, especially when he's not happy. We have been doing more constraint therapy at home and at OT and he does NOT like it. He just refuses to use his right hand/arm. He'll just sit there and stare at me while his OT attempts to get him to use it. We've realized he's getting smarter and knows that if he holds out long enough, we'll take the arm brace off. And he's right. So, now he's supposed to wear it 3 hours a day at home. He hates this but mostly because he can't suck is thumb. She said it's a tough age because he doesn't understand why we want him to use the right side when his left one works so much better. But we'll keep at it!

His AFO came in last week but it wasn't the one his PT wanted, so she sent it back and they ordered a new one which should be coming in this week. Tomorrow we see the nephrologist and they'll do some blood work to check on Dominic's kidney stones and how the Bicitra is working and make any necessary changes. We are on month three of the Klonopin wean, which means he's only taking half a dose one a day. So, in about a month and a half he'll be on only ONE seizure med. Ah-ma-zing is all I can say. Other than that, life is back to normal with Mitchell at school, Mike at work and me running Dominic from appointment to appointment.

Life is good. Life is normal. Life is happy. We are incredibly blessed to have made this much progress in the past year. Dominic is a little champ and endured so much always with smile on his face. Here's to a happy and healthy 2012!

Mamma and Bampa with most of their grandkids at the Dunlap Christmas party

Opening presents with Mamma and Bampa

The fam on Christmas Eve

Breakfast with Santa!

Trolley Ride!

My little reindeer

The boys on Christmas eve

Opening presents

Happy New Year's!

Such a little miracle :o)

Moving Forward

We had a busy week! Dominic finally got his tubes on Monday after getting rescheduled 3 times. The anesthesiologist didn't feel comfortable doing the procedure at an outpatient office with his health history. So, we had to have it at the children's hospital. He seems to be doing better and is much happier now that he can hear. The kid never shuts up! He's either squawking like a little bird or babbling. He seems to really love being able to hear himself make noise. The procedure was really fast and we had no problems. I seriously only had time to go to the bathroom before they came out and got me to tell me he was done. Piece of cake compared to his 10 hour brain surgery!

Time for some tubes!

Dominic also got casted for his AFO (ankle foot orthosis) on Wednesday. That will take a couple weeks to come in but should be helpful once he can start wearing it. He is bearing more weight and can stand for awhile with me just holding his hands. But you can see that his right ankle is weaker and tends to lean/slump to one side. So, should help keep his right leg and ankle in correct alignment.

Dominic's new footwear he'll be sporting

We saw the Urologist this week and he got another ultrasound of his kidneys. Stones are still there, about the same size, so he'll have to continue taking Bicitra (which is disgusting and he hates it). But they haven't gotten bigger, so that's good. He said at this point they are small enough that he would pass them. That should be a fun experience should it happen!

He had a great week at PT and OT as well. He did the best he's ever done on the treadmill, really trying to take steps. He even for the first time, tried taking steps on his own while I was holding his hands. His PT said that means the treadmill is doing it's job - teaching him how to walk. He also spends time at home in his gait trainer, but he's not a huge fan of it. It seems to bore him :o) He's not close to crawling, but definitely gets where and what he wants, as you can see in the video below.

His new favorite thing to do

I can stand!

Standing on my own (for a few seconds) at my play table!

The past few weeks we have had quite a few friends and family that have gone through some really tough times. It breaks my heart and I have no idea what they are going through. But I do feel that the past year with Dominic has really taught me more compassion and empathy. I do know what it's like to spend countless hours in the hospital. I do know what it's like to wait in agony to see if my child will survive major brain surgery. I do know what it's like to be up all night with a seizing baby, afraid to sleep because he might aspirate on his own vomit. I do know what it's like to have no hope. But I also know that God is bigger than it all. I've experienced the grace of God in so many ways. And I believe in miracles, because I have my own living, breathing miracle. God allows some really bad things happen to some really great, amazing, God-fearing people. I don't understand it and it doesn't seem fair. But I know that God will never forsake us and He always gives us what we need for each day if we trust Him and give it all up to Him. I am grateful that God used Dominic to break me. I've always considered myself such a strong person, but 9 months ago I was truly broken. Only through the grace of God could I pick up the pieces and be put back together. I now feel like I can empathize with people who are suffering more than I ever could have before; and that is a true gift. I only hope and pray that I am able to use our experience with Dominic to help others who are struggling.

Tube Time....Finally

Tomorrow Dominic will FINALLY get his tubes! After being rescheduled several times, I finally had to open a can of whoop-a** on the ENT office. They kept rescheduling his surgery and last week tried to push it to December 19th. Finally I said no way, no how. The poor kid has been through enough in the past year and if Children's Hospital of MI can schedule major brain surgery (which is only performed there 10 times a year) in less than two weeks, they can schedule a 10-minute tube procedure in less than 2 weeks here at DeVos Children's. The nurse called me back and said 'how about this Monday?' So, tomorrow at 11:45 hopefully Dominic will be able to hear after four months of feeling like he's underwater. And hopefully no more ear infections.

Aside from ear infections, the only issue we're dealing with these days is teething. Hallelujah! Dominic is doing great. He continues to amaze us and he is such a joy. He is the happiest thing we've ever seen. My mom said he's like "a ray of sunshine". The kid just seems so happy to be alive.

Mike and I got away this weekend to celebrate my big 3-0. My folks came up to watch the boys and Mike and I got to enjoy a nice steak dinner, some wine tasting and a night at the Amway hotel. It was fabulous! The best part about it was that we no longer worry the entire time about Dominic. We actually got to enjoy a night together, laughing and reminiscing without constantly checking our phones or checking in with my mom. It was the best way to spend my birthday, especially considering this time last year we were just getting released from the hospital. It has been such a gift the past few months to be free of the constant worry and anxiety we've been slave to the past year. Plus my parents had a great time playing with their two little guys without the worry and stress as well!

The Amway all decorated for Christmas!

At Reserve, the wine bar I've wanted to go to for months!

Mike playing with my new birthday present

The D-man with Grammy

Life has been pretty clam lately. We've had a fair share of illness - I've had a cold and laryngitis for 13 days! Dominic has had colds and ear infections off and on, and Mitchell had the stomach flu. But other than that, we keep up our routine of school, work, OT, PT, and doctor appointments. We saw the neurologist last week and they are thrilled with how well Dominic is doing. We just started month two of his Clonazepam wean. In 3 months Dominic will be on ONE seizure med!! I never thought I'd see the day! We have an appointment this week for Dominic to get casted and fitted for his AFO (ankle foot orthotic). Now that he is standing (assisted), his PT wants him to get an AFO to make sure his right leg/foot are in correct alignment. He continues with treadmill training at PT and uses his gait trainer at home. For the first time ever, the other day Dominic pushed all the way up on his tummy so that his arms were straight. This is a big step for him since his right arm is so weak. It's proving he is getting stronger on his right side and is able to use his right arm to support himself. Crawling will be a challenge for him because of how much he needs to use his right arm, side and leg; but I don't doubt he'll do it. He'll figure out a way. It's so obvious now how much he wants to move. He can turn himself in a complete circle but gets pretty frustrated ending up in the same place that he started. But he'll get there, I know it!

365 Days

 So it has been a year since Dominic had his first seizure. I can't believe it! I never thought we'd be where we are now a year ago, let alone 6 months ago. I am thrilled that the biggest issue we're dealing with right now is ear infections. That's so NORMAL! Speaking of them, we saw the ENT on Monday and he is scheduled for tube surgery next Tuesday (11/29). Hopefully all goes well and we can get rid of these pesky ear infections for good. Hopefully this will also help his speech/language (or babbling). He's had fluid in his ears for 3 months and the doc said his ears have probably felt clogged and based on his audiology tests, his hearing has been impaired. So, we'll see!


It's hard to believe that it has been 365 days since Dominic had his first seizure. That first seizure would lead to a long, hard road and year ahead. At times, it felt like our world was spiraling out of control and we would never have a normal life again. So much has happened that it's hard to believe it's only been one year. Dominic, let's see how far you've come, baby!

Back Home

Well, I survived my first trip with the boys flying solo. The boys did great. Not going to lie, flying with two young kiddos alone is stressful and I'm not sure I want to do it ever again, but it went as best as it possibly could. We had a blast with my folks and Mitchell and I got to spend some quality time hunting for turtles, driving the golf cart, collecting shells and swimming. I also got a little down time thanks to my parents. I even got my butt kicked by my dad in tennis! Dominic loved the island as well. He LOVED the pool. He was kicking like a mad man and actually moved himself across the pool by kicking. Below is a cute video of him "swimming". I was also thrilled to have my good friend Tami and her little guy, Donovan, come stay for a night. Mitchell and Donovan are only a few months apart so they had a blast chasing each other up and down the beach. The only issue during our trip was that Dominic got ANOTHER ear infection. So, his doctor had to call in a prescription while we were down there. Overall, great trip and I did not want to leave the 80 degree sunshine. But it felt good to come. The only thing that would have made the trip better was if Mike could have been with us. Here are a few pics from the trip.

Such a happy little guy

Thanks to Grammy and Gramps for the great trip

Captain Mitchell

Sunset cruise

Cute boys :o)

Fun with friends Tami and Donovan

Turtle!

Playtime on the deck

My sweet boys

Life's a beach :o)

Since we got in really late Thursday night I took Dominic in on Friday to get his ears checked. Infection is gone but he still has fluid in his ears. So, I'm expecting a call from the ENT this week and hopefully we'll get in there and figure out if/when he's getting tubes. The poor kid has been congested and had ear infections for the past 8 weeks. I assume just get it over with so we can move on with our lives...

Mike was sweet to let me sleep in till 9:00 on Friday. Despite the fact that we were on vacation, the boys were up at 6:30 every day, except for Sunday with the time change - they were up at 5:15! Is it weird that I felt the need to recover this weekend from vacation? I was pretty worn out, so we laid low this weekend and just relaxed. Then this afternoon Mitchell came down with the stomach flu. Always fun. I am praying I don't get sick. I can handle taking care of sick kids but if I get sick it's impossible to take care of the boys. And Mike does not have any more days off. So, let's hope I get through this unscathed and we can put the stomach flu behind us for the rest of the winter.

Back to reality this week and a busy week it is. We are supposed to have OT tomorrow, but I guess that depends on if I'm still cleaning up puke. Tuesday, Mike's dad is having major open heart surgery. We were planning on going to the hospital for the day, but I guess that all depends on how we're all feeling. We're saying lots of prayers for our sweet Bampa as he undergoes this big operation. The rest of the week is filled with PT and more OT and hopefully Mike and I will get the date night we're planning for Friday. Oh, I forgot to mention that Dominic hit a pretty big goal of his while we were in Florida. He's standing! Well, sort of. Not on his own, but until just recently he really didn't bear much weight on his legs. Now he can't stop! He can stand with only holding onto my hands, which is huge for him!

Dominic Standing!!

Tricks and Treats

The last couple weeks have been a little nuts around here. Dominic is on his third ear infection in 6 weeks. He is on an injection antibiotic and we're hoping this gets rid of it since we are are flying to Florida on Friday morning. We are all sort of assuming the antibiotics haven't been working because he's built up such a tolerance from being on so many during and after his surgeries. We went back today to get his ears checked. There is still fluid but the redness is gone. So, we'll probably be heading to the ENT when we get back to talk tubes.

Despite the ear infections, Dominic is a pretty happy guy. We started weaning the Clonazepam yesterday and already I can see he has more energy. This will be a long process. The weaning schedule will take about four months because they don't want to risk any withdrawal symptoms. But he's on his way to being on one less med!

Still happy, despite ANOTHER ear infection

We had a really fun Halloween this year. Mitchell gets the concept and we had several Halloween parties and events to attend. The whole family also ran the Alger Heights Halloween 5K last weekend. I ran with the two boys in the double jogger, Mike ran a pretty decent race placing 9th in his age group, and Mitchell was so excited and proud of himself for running the kids fun run. He got a t-shirt, his own number and a ribbon when he finished. It's such a fun run because everyone comes in costume, plus it was a gorgeous day for a run.

Good day for a run!

Mitchell getting ready for his race

Tigger liked the race too

 So, this week has been busy with laundry and errands as I prepare for a week in Florida. I'm having some anxiety about the flight since I'm on my own with both boys, we have a layover and Dominic has a double ear infection. I'm praying the antibiotics work and he does okay in a couple days. I am really excited to have a week on the beach and I'm looking forward to having my parents there to help so I can spend some quality time with Mitchell.

Carving pumpkins

Pooh and Tigger!

Trick-or-Treating

Dominic can finally sit unassisted and if he starts to fall to one side, he can catch himself, even with his right arm. Yesterday I had him up on all fours without his arm brace! His right arm and shoulder are finally strong enough to support himself, if only for a few seconds. It's progress! All the paperwork is in for his AmTryke, so hopefully we'll be getting that in a few weeks.

Sitting!

It's ironic that November is National Epilepsy Awareness month and it's the same month Dominic was diagnosed. It's been nearly a year since this journey began and I feel incredibly grateful that I am already at the point that I can look back and see how much he's changed and progressed. It's been a crazy year, but to think that everything has happened in less than a year is insane. Let's hope and pray the next year is a little less eventful :o)

Seeing that it is Epilepsy awareness month, Mike and I are attending the Epilepsy Foundations 'Toasting Hope' event tomorrow night. Live and silent auction, good food and drinks and of course the night would not be complete without a private performance by Brian VanderArk (the lead singer of the Verve Pipe). Dr. Arndt is on the committee, so it will be fun to see him too. But most of all it is a great fundraiser for The Epilepsy Foundation and all of the proceeds will go to help those still suffer on a daily basis with epilepsy.