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.

Cold, Ear Infections and Tubes?

We were back in the pediatrician's office last Friday with a second ear infection in 3 weeks. Last week Dominic was up most of the night for three nights in a row. The doctor thinks that he had an ear infection, the infection cleared from the first round of antibiotics but it didn't drain. So, it caused another ear infection and a sinus infection. He was put on another antibiotic last Friday and is doing much better. (Apart from the effect the med has on his poop! I have done 2-3 loads of laundry per day because he blows out of everything. Including Thursday during his CT scan and again at the neurosurgeon's office :o) Because of all his other issues, his doc said that if he ends up back in the office with another ear infection in the next few weeks, they would put in tubes. I'm always freaking out because the nights he's up all night I constantly worry if it's his shunt, his kidney stones or something related to his surgery. So, because of his other issues, putting tubes in would eliminate ear infections as the problem.

We had another great week at OT and PT. He's bearing more weight on his legs and is using his right arm more each week. He LOVES the swing. Here is a cute video of him and his OT, Sarah, on the swing.




Thursday was crazy. We started with  PT at 7:45am, followed by a CT scan, shunt survey and an appointment with the neurosurgeon. Everything looks good. Shunt is in good shape and the hematoma he had post-hemispherectomy is gone. No need to see Dr. Scarli for another year, unless anything happens with the shunt.

We were all finally home together this weekend. Mike and I had dinner with some friends while the boys enjoyed a Halloween party at The Nanny's on Friday night. Yeah for date night! We went to the pumpkin patch on Saturday and got pumpkins, did the corn maze and picked apples. We also did some needed cleaning/organizing around the house and spent time outside enjoying the great weather. We've been so busy this month; we really enjoyed having this weekend at home.

At the farm waiting for the hayride

Lost in the corn maze!

Picking out pumpkins

Picking apples

 I was talking to my mom the other day and was just expressing to her how happy I've felt lately. I never thought I would enjoy some of the most mundane things. But it's just been awesome to feel 'normal' again. She told me something I hadn't thought about before. She told me to ask God to never let me forget what those 10 months felt like. To never forget the hurt, heartache, stress, anxiety and sadness that I felt. And to never, ever forget that He was the only one that could have gotten me through it. There were days I wasn't sure I was going to make it, days I wanted to quit life and days I needed Him for every breath. Now that life has calmed down, I don't need God the way I did. But I should. He isn't just there for the hard times; and I never want to forget that. At this point in my life I may not need Him to get through each day, but I will always remember the days I did. And I will praise Him each day for the grace and blessings He's poured out on us.

Party Time

We had a great weekend in Naperville. My parents hosted an open house for friends/family in the Naperville area to come see/meet Dominic. We had a great turnout and it meant SO much to us to see so many of the people that have been such a great support to us over the past year. We were also able to celebrate Dominic's first birthday with my family, which was great. Below are a few pics from the weekend.

My wonderful friend Liz came out to meet Dominic!

Great friends!

Mitchell might have just eaten 7 brownies for dinner. I'm such a good mom!

Happy Birthday, D-man!

This week, was of course, another busy week. We met with the neurosurgeon here in town who will follow Dominic and be available should he have any issues with his shunt. He's requiring a CT scan and a scan that will show his entire shunt from head to abdomen. So that will be scheduled soon. Wednesday, Dominic had an x-ray of his hips which showed that everything looks just fine. So, we're assuming the discomfort he's been having during PT is just from lack of use of his right leg. He probably has a little tightness in there. So, good news that there is no dislocation or anything.We filled out the paperwork this week for his adaptive trike, so hopefully we'll be getting that soon. Today we had playgroup at the school through the Early on Program and then PT. His PT is writing up a scrip to get him an AFO (ankle foot orthotic) as soon as possible. Now that he his spending more time on the treadmill and on his feet at home in the gait trainer, they want  to make sure his right foot is in the correct alignment. More equipment, yeah!

Dominic has had a cold for several weeks now and we were in the pediatrician's office again this morning with another double ear infection. That's two in three weeks. I probably seem like I'm overreacting, but he's been up the last 3 nights for several hours crying and screaming - totally inconsolable. It's stressful because I don't know if it's his shunt malfunctioning, his kidney stones or something as simple as teething or an ear infection. So, the doctor said if he is still having ear trouble in the next few weeks, he's going to put tubes in. At least that way we can eliminate ear infections as a cause the next time he's up screaming all night. Despite the continued cold and ear infections, Dominic continues to do well. He just seems more active and alive every day. He and Mitchell have really had a lot of fun together these days. Mitchell seems to really love his brother now that all the attention isn't on Dominic. He loves to hug and kiss his brother and he especially loves to read to him!

Reading Curious George to his little brother

Working on standing

Mitchell showing Dominic how to play with his trains

I am headed off on my own this weekend! A friend of mine moved up to Traverse City in June and I am going to visit her. We have some fun girl stuff planned this weekend, which will be great. I am so looking forward to it and I know Mike is psyched for an entire weekend on his own with the boys...ha! It will be good for him, lots of male bonding :o)

Two Months Post-Surgery

And doing amazingly well! I can't believe it's only been two months since his surgery. Dominic is using his right side more than he ever has before. His PT and OT are going to be doing more constraint therapy as Dominic has been showing more strength and control in his right arm/hand. Robin, his PT, wants to focus a lot on treadmill training as he has shown more interest in standing and "walking". We got our gait trainer today and he seems to like it so far. This is normally used to help kiddos as they begin to walk, but Robin wants him to use it at home mostly to get used to being on his feet. He's so funny, he's been trying to "step" and make it move. But really, it looks like he's just dancing. It's so cute :o)

We had a great weekend with the Dunlap family to celebrate Dominic and Dylan's first birthday's. It's been a wild year and we definitely had reasons to celebrate. Below are a few fun pics from the circus party. This weekend we are heading to Naperville to celebrate his birthday with the Jurgensen's.

Dominic is pretty much over baby food and rarely lets me spoon feed him. He loves to feed himself. His newest interests are cheese, scrambled eggs and peas. Anything he can pick up himself and shove in his mouth he likes. He loves rice and risotto as well as this potato, corn and chicken dinner I make for him.

scrambled eggs...yum

I had been trying to get a hold of Dr. Arndt since Dominic's EEG last week. He's a difficult man to get a hold of and he must have been very surprised when I ran into him in the elevator on Tuesday! He was heading to the neurology clinic and I was late for PT (as usual). We chatted for a bit and he told me that Dominic's EEG looked TOTALLY NORMAL!!!! Not just normal for a child with half a brain, but normal! This means that the remaining hemisphere is healthy and functioning normally. This is a miracle! We decided that while this is great news, we don't want to take any chances. So, Dominic will be totally weaned off Vimpat on Sunday and then we'll wait three weeks before starting the Clonazepam wean.Clonazepam is a very strong medication and can have really bad withdrawal symptoms (as we saw when we tried to take him off it prior to surgery). So, we're going to take it very slow. I don't care though, I am just thrilled that everything looks good, he's seizure free, and on his way to becoming med free. This is the best that Dominic has been doing since he was 2 months old!!!

Dominic continues to progress every day. He's making more vocal sounds, moving more and exploring more of the world around him. Now when I hold him he is constantly bouncing, kicking, reaching and pulling. Just a couple months ago he would just lay limp in my arms. It's amazing how much more alive he is! He loves bath time (as you can see below!)



There are very few people in this world that I would say I am "in awe of". There are a lot of people I respect and look up to and admire. But very few am I in awe of. Dominic is one of those few people. Every morning when I go in to get him and he greets me with his signature half smile; I am in awe. Every time he goes to therapy and he makes progress; I am in awe. Every time he looks at me and I think about what he has endured the last 10 months, I am in awe. Every single day I am in awe of him. To think that he had half his brain removed two months ago and is doing as well as he is just astounds me. It's amazing how much your child can teach you. Especially one that's only been alive for a year. But in that year, Dominic has overcome so much and his strength, determination, spirit and will power make me want to be a better mother, wife, sister and person. God truly works in mysterious ways and uses the most unlikely circumstances, and people, to reveal Himself more fully.

365 Days and Counting

Dominic is 365 days old today. A lot of the past year has been measured in days. The number of days he was having seizures before he was first hospitalized (3), days it took for the ACTH to stop the spasms (7), total number of days he's spent in the hospital (30), and the number of days he's been seizure free (59). We feel incredibly lucky to have our little Dominic so happy and thriving after what he's been through over the past year. To be honest, 6 months ago I didn't see how we were going to make it to this day. In the thick of everything, it was hard to see a light at the end of the tunnel. But here we are! We have so many reasons to celebrate today. Dominic has been an incredible addition to our family and we are looking forward to another great year with him - hopefully with less drama, tears, stress, meds, and hospital stays. 

Dominic's birthday started off with a bang with an EEG at 7:45 this morning, followed by PT at 9:00. The EEG is to rule out ANY electrical activity in the remaining part of his brain. If all checks out, we'll start weaning the Clonazepam in about a week or so. That will leave him on ONE seizure med. Woo hoo! He's such a trouper and does everything with a smile on his sweet little face. His PT, Robin, put him on the treadmill again today and I caught a couple videos of it. He seems to like it! She is also going to set us up with a gait trainer at home (similar to the one below) so that Dominic can spend more time on his feet. Therapists hate the jumparoos and exesaucers because of their position in them.

What a champ at 7:45 am

He's realized he can pull them off his head now

Gait trainer, similar to the one Dominic will get

Mitchell, Dominic and I met Dad for a birthday lunch downtown and I baked him a little cake (which I was not prepared for when I frosted it, hence the Christmas sprinkles...woops) for tonight after we open his presents. We'll be having a bigger celebration this weekend when we celebrate a combined 1st birthday with his cousin Dylan. Should be a lot of fun! Cheers to another year!

The boys at lunch

The boys playing with one of Dominic's presents. I bought this before I knew he was getting an adaptive one.

Not sure at first about the cake

Yeah, it's good