Step By Step

It's been a long time since I last posted anything. It's been a crazy past couple months! We had a great Halloween and Thanksgiving in Naperville and the boys can't wait for Christmas! We saw the neurosurgeon here in GR last week and he was shocked to see how well Dominic is doing. He's only seen him once before, and it was a few weeks after his surgery. So, he thought Dominic looked amazing. Always good news :o)

Halloween: Our little  Ninja and Cat in the Hat! We also rocked the Halloween 5K!

Thanksgiving 2012 in Naperville with the Jurgys

Dominic has continued with OT and is doing great. He's at a point where he will use his right hand without needing to restrain his left hand. He's starting to understand that he has two hands and that he can actually use them both! We have taken a bit of a break from PT. Robin felt that until he's walking on his own, he was pretty much doing everything at home that he was at therapy. Speaking of walking, Dominic seems to progress each week. He's not walking totally independently, but he can take four steps on his own. Then he sort of gets "stuck" and isn't quite sure what to do next. So, he's getting there. Slowly but surely! Here is a video of Dominic when he started walking with his push toy. This was a couple months ago, so he's even more mobile now!


Dominic was also evaluated for speech a few weeks ago and surprisingly fell into the low end of "normal" language for his age. He has started talking a lot more, mostly mimicking and repeating. But he does have a few words he uses consistently - doggy, up, more, bye-bye, hi, daddy, brother, mama, nana (banana), ba ba (bottle), popcorn, all done, and pretty. I'm sure there are more, but I can't think of them right now :o) His Early On OT wanted him to do an intensive speech playgroup starting in January, but with our crazy schedule, it just wasn't going to work. So the speech therapist and OT are going to come out every other week so that he'll have a bit more focus on speech therapy.

Other than that, not too much is going on with us. It's crazy to me that Christmas is in one week! I have no idea where the past couple months have gone. We have been enjoying the season - our tree and lights have been up since Thanksgiving and we experienced Breakfast with Santa and the Santa Train for the first time last weekend. I also hosted a small Christmas party with some friends and their kiddos, and we had Mike's company party last Friday. Mitchell has his school Christmas party this Friday and the Dunlap family Christmas is on Saturday. A lot of Christmas cheer going on around here!

Christmas Prep: Santa Parade (notice our independent stander), house lights,
breakfast with Santa, and Santa Train!

This time of year I get a little sentimental because I think back to Dominic's first Christmas, when we almost spent it in the hospital. I am so grateful for his health and happiness. He really is the light of our lives and brings so much joy to our family. I wish you all a very merry, happy and blessed Christmas and prosperous New Year!

Progress Report

We've done a lot of traveling the past couple weeks! Last week the D-man and I headed to Children's in Detroit for an MRI and appointment with Dr. Sood (neurosurgeon). My fantastic mother-in-law accompanied me so I didn't spend all day downtown Detroit by myself. MRI went well, I forget how horrible it is to watch your kiddo get stuck several times to start an IV. MRI's, CT scans, spinal taps, blood draws - these were all routine and part of our everyday life for so long. It's crazy that it's been more than a year since his last one. A lot of emotion and memories I had blocked out came rushing back. Thankfully this time it was just a routine follow-up and not due to seizures, a stroke, a hematoma etc. God is so good and has been so faithful. Every single day I am still amazed and grateful for Dominic's healing. Remembering his first year of life, I don't think I will ever forget what a miracle Dominic is.

Our appointment with Dr. Sood went as expected - good and brief. Dr. Sood cuts to the chase, no messing around with him. He said Dominic looks fantastic, the scar looks great and shunt is working just fine. He was very pleased to hear Dominic's constant babbling (and a few real words) as well as how quickly he scoots around. He believes Dominic will be back on track within a couple years. Yay! He doesn't feel the need to see Dominic again until next year.

Quality time with Mamma

Even sedated, always sucking his thumb!

This past weekend was a whirlwind for us. I ran my first 10K Saturday morning which went well. Not sure I'll do another one - I like the shorter races, particularity the ones with fire pits, barbed wire and mud :o) But I did it, so I can cross it off my list! Mitchell also had his last soccer game and he received his much anticipated medal. I think that was the only reason he wanted to do soccer from the beginning as he clearly has no interest in actually playing the sport. But it was a good experience. We then headed to Chicago for one of my dear friends' wedding. It was absolutely beautiful and she was the most stunning bride ever! Liz and I have known each for HALF our lives, which is just crazy to think about. It was a wonderful celebration! We took off Monday morning for Saline as we had an early morning appointment at DMC with Dr. Chugani on Tuesday.  I was really excited to see Dr. Chugani, as he hasn't seen Dominic in over a year. He was very pleased with how he's doing. He mentioned Dominic has some tightness in his weak arm that may be addressed when he gets older with surgery. Apparently there is a pediatric orthopedic hand surgeon in Detroit who is the only one in Michigan that performs this surgery. They would actually make a small incision on the inside of his forearm and loosen the tendons. This would get rid of the tightness and allow for more function in the hand/arm. He's much too young now, but could be a valid option in the future.

Go #8!

Watching brother's soccer game

Post-race

Most beautiful bride and high school friends

Road trip stop at a classic...

Waiting to see Dr. "Rock Star" Chugani

Not sure how it's the end of October already! We have a pretty fun weekend planned - family "monster mash" and movie night at the Kroc tomorrow and the Alger Halloween 5K Saturday - Mike's running, I'm working it and Mitchell is running the Kid's run. Should be a fun time! Mitchell is really excited for Halloween this year. He's chosen to be a pirate (thank goodness it's a costume we already own!) and he can't wait for his class party, as we are in charge of treats. I must get on Pinterest for some fun treat ideas! Dominic is going to be a Kung Fu fighter (thanks to my sister for bringing home the outfit from China). Now Mike and I just need to figure out what we're going to be!

Constraint Therapy - FAIL

So, after one week with the cast on, it came off. We were really hopeful, especially after the first couple days. Unfortunately, Dominic sort of decided to just quit doing everything. He stopped cruising around just started screeching when he wanted something (which was not annoying at all). He wouldn't even attempt to use his right hand. Since the last thing we want is regression, Sarah decided to take off the cast. She said she sees this sometimes with stubborn kiddos :o) So, we decided to do small increments of constraint therapy a couple times a day home - basically what we do at OT. It's going okay. He does not like being tied to his high chair, but he's does what he's supposed to. This kid just really doesn't like to be forced to do anything. Everything is on Dominic time!

Chillin' with my lovie

Ready for his bath

Tied up and put to work!

In other news, his PT thinks we're at a point we can take a break. This is good news! He is on the verge of walking, he just needs to go for it. So, there isn't much more she can do until he starts walking. At that point, we'll have to work on his gait or any other issues he may have with walking. He'll see her through October, but then we're done for a few months. This will be a nice break for us and relief on our schedule!

We have a pretty busy October coming up. We head to Detroit the third and fourth week of the month for all of Dominic's one-year post-of appointments and MRI. Mike and I are really anxious to hear what Dr. Chugani thinks of Dominic's progress. He hasn't seen him since he was six weeks post-op. He's come a long way this year and I can't wait to see what he'll do in the coming year.

We celebrated our little this past weekend! Still can't believe he's two. He still feels like my baby. Maybe it's because he isn't walking and STILL drinks a bottle. Seriously - what is with the aversion to a sippy cup? Eh, one issue at a time..

The birthday twins

Prezzies!

Cake...which he refused to eat. Kid doesn't like sweets. Go figure.

The big birthday gift!

He loves it!

This kid is just such a joy! He has been such a blessing to our family and he really does bring out the best in all of us. Cheers little man!

Bittersweet

A couple weeks ago we had a routine appointment with Dr. Arndt. It went well, he's very happy with how Dominic is doing. He said that if Dominic's speech continues to improve and he is walking independently in the next couple months, he's pretty much back in that "normal" range. Granted, probably on the lower end of normal, but still NORMAL. Just amazing to hear that from the man who initially gave him such a poor prognosis. So, this was fantastic to hear. At the end of the appointment, he gave the news that he is leaving DeVos and taking a position at Beaumont Children's hospital across the state. I was crushed. Fortunately, Dominic is in such a good place that it's not going to be that big a deal to see someone else. But Dr. Arndt knows him so well and has been there from the beginning. Both Mike and I truly feel that God placed him in our lives at exactly the right time. He arrived one month before Dominic started having seizures, and is leaving a month after Dominic's one year anniversary of being seizure free. He did give us the option to continue to see him at Beaumont, but we haven't really decided what we want to do. It may not be a bad choice since he only sees him every 4-6 months anyway. We're over on the East side so often, it might be nice to stick with a doctor we know, trust and love. It's bittersweet.

Going to miss this guy!

 Today was also a pretty big day. After discussing it with his OT for weeks, Dominic was casted this morning as part of his CIMT (constraint-induced movement therapy). He'll have the cast on for the next 6-8 weeks. I have a few bottles of wine chilling in the fridge because I have a feeling it's going to be a long several weeks. He actually handled getting the cast on just fine, but lunch and nap time were a disaster today. He is really frustrated that he can't feed himself and REALLY pissed he can't suck his thumb. This child has gone to bed without a problem for most of his life. He lays right down, sucks his thumb and goes to sleep. Today, it took an hour of screaming before he finally passed out. I tried rocking him and sticking a pacifier in his mouth, but it did no good. I think not being able to suck his thumb is going to be the worst part of this process. I am hoping that this is worth it. It's bittersweet. Sarah said they've had success with a lot of other kiddos. He has been making some major progress the past few weeks at OT. Sarah would brace his arm and tie it to a high chair to force him to use his right hand. Each week he has made more gains. He attempts to pick up marbles and blocks. We're really not sure how much fine motor he can gain, but the goal is just have more bilateral use. Sometimes I think he has no idea he has a right arm. This should help with that. I'm hoping with his usual good spirits that within a few days he'll be okay with the cast and get used to the fact it's not coming off.

Trying to use silverware

Tied up and forced to work at OT

What am I getting myself into?

This sucks...I can't pick up my food!

I can't believe it's the end of September. I have no idea where the time has gone. It feels like we were just celebrating the 4th of July. School starting up again has made the weeks fly by. A couple weeks ago Mike, my friend Rachel and I competed in the Warrior Dash. It was such a blast!!! It was a 5K with 12 obstacles along the course including scaling walls, leaping over fire, cargo net climbs and climbing through mud under barbed wire. It was so much fun and reminded us of our Pull glory days back at Hope College. For those that don't know, The Pull is an intense century old tug-of-war tradition we competed in. It's actually how Mike and I first met :o) The Warrior Dash reminded us of Pull training and brought back some fun memories. Looking forward to doing it again next year!

Finished!

When you finish, you get a beer and giant turkey leg!

Oh to be 18 again!

Mitchell had his first soccer game this past Saturday. It was...interesting. I'm not sure soccer is his sport, but I think it's good for him to learn the sport and play on a team. He seems to enjoy hanging out with the other kids, but not sure he gets the game. I asked him what his favorite part of the game was and he said the snack afterwards. This could be a long season...

First soccer game!

If you can't tell, he's really into the game

This kid would give anything to be on the field

 We have a birthday coming up this weekend! Our little man turns two! It's weird, I can't believe my baby is already two years old, but at the same time it seems like he's been with us forever. My little old soul :o) My mom's birthday is the day before Dominic's so she is coming up here for a few days so we can celebrate both of them. It will be so nice to have her here a few days. The boys always love seeing their Grammy. Should be a fun weekend with lots to celebrate!!

My little buddy is almost two!

End of Summer

I can't believe it's September! I have no idea where this summer went. Let alone this year! Dominic will be TWO at the end of September. Wild. Anyway, we are starting to get back into our fall routine in the Dunlap house. Mitchell starts school on Wednesday and then soccer on Thursday. I can't believe how old he is getting, or that I'm in the "back to school" phase of my life. We've got a busy calendar these next few months between school, PT, OT, Early On, play groups, Bible study, and soccer. Dominic's Early On OT really wanted him to do this intensive speech playgroup, but I honestly didn't feel like we had the time or energy for it this fall. Plus, it's a playgroup. I've talked with all three of his therapists and none of them feel he should be evaluated for speech therapy at this point, so why does he need an intense speech "playgroup"? We see friends all the time and he is already attending a "playgroup" at Campus Early Childhood once a week! Sometimes I think he just needs to be a kid and play. He has been shuffled around between appointments most of his life. He is FINALLY at a point where he is healthy, thriving, and happy. I hate to add even more appointment to his schedule when it's not really necessary. So, even though I am the queen of "feeling guilty for not doing enough," I said no. And I'm happy about it. Dominic will have all his appointments while Mitchell is at school, but I'm also really hoping for some quality one-on-one time with Dominic. The kid is hilarious and we really don't spend enough time just playing together.

End of summer backyard campout

He loves his new gait trainer

Zoo trip

Playdate at the park

All ready for soccer!

Goofing around 

Cheering for Mom at the Naperville Triathlon

Pizza and ice cream at National Night Out

So besides getting back into our fall routine, we will be celebrating a big birthday for Dominic at the end of this month. We also have our one year follow-up appointments scheduled with. Dr. Chugani and Dr. Sood; as well as an MRI. I'm actually really excited to see what they have to say. We are seeing Dr. Arndt here in Grand Rapids on Tuesday as well. I'm hoping we will reduce or eliminate the Keppra altogether, but we'll see. I guess there's no rush. I got an email from a mother in the Hemispherectomy support group who's son had surgery 10 years ago and recently started having seizures again. It's amazing that Dominic has been seizure-free for a year, but I know we're not out of the woods yet. I'm not against keeping him on an anti-epileptic if it will reduce his chances of returning seizures. We'll see what all the docs have to say in the upcoming months.

Dominic has made some great progress this past month. No, he's not walking yet. But he has gained a lot of confidence and walks all around the coffee table; goes between the couch and the table and back. He has stood for a few seconds on his own before he realized he wasn't holding on. It won't be long before he walks! He just doesn't have great balance being Hemiplegic. But he is motivated and anxious to chase after his big brother :o)

He has made some gains in his speech as well. No, he STILL won't say Mama, but he seems to add a new word or two each day. His most recent new words are "cookie", "keys", and "sock". He even attempted to say "bye bye, Sarah" to his OT today. But nooooooo, won't say "mama"! I'm only the one who grew you, birthed you, cared for you, held you, and nursed you! I'm not bitter, don't worry. I know the day he says it for real though, it will melt my heart.

So, in addition to our busy fall schedule, we decided to spice it up with a little constraint therapy. Sarah and I discussed it today and she's planning on casting Dominic at the end of September. She feels he has gained enough mobility that he's ready for it. So, she will cast his left hand/arm (his good one) for 3-8 weeks! She said they have had a lot of success with other kiddos. I'm more worried about the fact that he won't be able to suck his thumb. I'm thinking it's going to be a rough several weeks. But, if it means he'll gain a lot of fine motor skills in his right hand, I'm all for it. He has just been such a stinker at therapy lately because he knows he can do everything with his left hand, so why should he bother with the right? Sarah assured me she would warn me the day before so I could have a few glasses of wine to prepare myself for the hell that will ensue. I'm really hoping and praying that because Dominic has such a great demeanor that he will get over it in a couple days. But we'll see, he is almost two after all!

We head to Naperville this weekend for a R&R and a Jurgensen family reunion! I'm so excited to see family I haven't seen since last year and relax by the pool. Our last farewell to summer!

One Year

Wow, I can't believe it. It's been one year since Dominic's surgery. Mike, the boys and I went out to dinner tonight to celebrate Dominic and being seizure-free for one year. Mike and I were talking about what we were doing and feeling a year ago. And how crazy it is that he's been seizure-free for a year. The long, grueling, 8 months he was sick were the longest of our lives. It felt like 8 years, not 8 months.

It's amazing how much has changed the past year. Here are some, just to name a few:

1. Dominic is talking/babbling. He is now up to about 10 consistent words - da da, bye-bye, hi, nana (bananas), ba ba (bottle), dog, woof, moo (for cow), quack (for duck), uh-oh.

2. Dominic is "walking with assistance". I guess he's not cruising, because cruising really means he goes side to side around furniture. He walks forward holding on. But that's because he can't use both hands. So, in my book it's adapted cruising. But whatever, he's up and mobile!

3. Dominic feeds himself - he eats with his hands and we are just now starting to have him use a spoon. I say "starting" because he hasn't quite grasped it. He mostly just flicks yogurt off the spoon onto the floor because he knows it annoys me. But, we'll get there.

4. He is FINALLY starting to use a sippy cup. This has been a looooooonnng time coming. Like months and months. I still mostly force it on him, but just recently he's started picking it up and trying to drink out of it. I believe he can do it. I just don't think he wants to. Dominic is very stubborn and set in his ways. Just like his dad :o) He doesnt' like to be told what to do or how to do it. He does it on Dominic time in Dominic style. I'm okay with that. I think this will come in handy in the future...

5. Dominic and Mitchell play together. This is adorable to watch. Mitchell is usually very gentle and patient with Dominic, but lately Dominic has become the feisty one. He takes things from Mitchell and tries to take over things. So, it's fun to watch them interact and "play" together. Their favorite thing to do is both sit in Dominic's crib and throw everything out of it. Mom doesn't love this game, but they do. I can already tell how much Dominic loves and looks up to Mitchell. He laughs at almost everything he does and mimics him all the time. Considering one of  my biggest fears after Dominic's surgery was Mitchell's resentment, it's amazing to watch them. He harbors no ill-will and it's clear he really, truly loves his brother. What a blessing!

6. He is SO happy. I mean really happy. Everything is funny. Everyone gets a smile or laugh and he will be anyone's best friend. It's very rare he cries. If you throw a ball at his face, he will cry. If he cracks his head on the corner of the table he will cry. But other than that, really happy kid who rarely cries. I think this attribute really helped him get through the first 10 months of his life. He inspires me to be a happier person and you can't help but be happy when you're around him.

So, those are just a few. Obviously a lot of them were a long time coming. Dominic refused to even bear weight on his legs until last November. So, the fact that he's pulling up and moving around on his own is incredible. He's obviously delayed but almost everyone (all specialists included) believe he will catch up by school age and will be relatively normal. SERIOUSLY??? I never thought I would hear someone utter those words. I remember with such clarity when I was told that he will probably never feed himself, never walk, never talk, never do anything. Never be 'normal'. Well you know what? Look at him now! He is a true, living, walking miracle. My God is bigger than any illness, any seizure, any doubting doctor. My God is faithful. My God is a healer. My God is a miracle worker.

I have no idea why God chose to heal Dominic. No idea. I know that God can do anything He wants whenever He wants. But He didn't have to. He doesn't heal everyone. And I don't know what to say or how to respond to someone who's child has not been healed. My heart just hurts for them because I do know the pain of watching your child suffer. And I do know the pain of getting that heart-wrenching news that you're child will never be 'normal'. All those thoughts of what they could have been race through your head. And the grief of losing the child you always imagined and prayed for. And then trying to cope with what lies ahead. How your life will change. How your family will change. How people will change toward you. How your life will never be the same. Ever again.

I also know that prayer changes things. And I know that THOUSANDS of people were and continue to pray for my sweet boy. I don't think that's the only reason God healed him. I'm not sure I'll ever know until the day I stand before Him. But I'm pretty sure that's the first question I'll ask. All I can say is that there is not a single day that goes by that I am not in awe of what God has done. Not a single day has passed that I don't look at Dominic and say "Wow God. Look at what you have done". I know there is a greater reason that God healed him, other than to make our lives easier. This boy was born for a purpose and I cannot wait to see what that purpose is.

This isn't to say he'll still have challenges. I mean, the boy is peripherally blind in both eyes, so he may never drive and clearly will not be serving in the U.S. Air Force. He is also Hemiplegic so he doesn't have much strength in his right arm and his right hand is pretty much useless. You put something in his hand and try to get him to hold it and he quickly grabs it out with his left hand. He doesn't like his right hand and really doesn't want you to make him use it. Hopefully one day, when he understands the necessity of it, he will put more effort into using it. But we'll see. He's pretty stubborn. He will also always have a limp. He will wear an AFO (ankle foot orthotic) for many, many years. Most likely into adulthood. He will also probably have comprehension problems. Removing half your brain will do that to you :o) But all of these are minor compared to what could have been and what issues he could be facing. So I will take these any day and hope that when he is old enough to understand, he'll know why we made the decision we did. Even though it left him with obstacles, I hope he will agree with our decision and be as grateful as we are for the miracle he is.

In true Laura form, I put together a sappy video recapping the last year. I did it for me. And for Dominic. I want him to have something for him to look back on when he's older. But I'll share it on here with all of you too. Enjoy!


Cheers Dominic, to a year full of firsts, accomplishments and NO SEIZURES!!

We love you, admire you, and thank God every day for you!

Love,
Mom and Dad

Walk This Way

So, a lot has gone on over the past couple weeks. I spent a fantastic week in Naperville with the boys. We did all sorts of fun stuff - Cosley Zoo, swimming lessons, took the train to 2Toots Grill, Blackberry Farm, Build-A-Bear, saw great friends and family, and had a lot of pool time. It was sort of a "summer vacation" for me and the boys and I tried to pack in as much fun stuff in a week as possible. We wished Mike could have joined us, but someones gotta bring home the bacon! Here are a few pics from the trip!

Melt my heart! Two brother's lovin' on each other :o)

Pool time with Katie and the boys

Petting the goats at the zoo

Here comes lunch. Choo choo!

No one wanted to build a "bear", so we made "George" and "Moo Cow" instead :o)

Somone LOVES the merry-go-round!

Dinner with my darling, Liz. Sweet friend since we were 14!!

Riding the carousel at Blackberry Farm with Grammy!

Mitchell taking swimming lessons at the pool where I used to swim, coach and lifeguard

But the biggest news is that Dominic is CRUISING on his own! He has been pulling himself up constantly onto everything, which means he's getting into everything. He has almost fallen head first into the bathtub several times because that quick bugger gets in there so fast I can't take my eyes off him long enough to get dressed! He also seems to have a new fascination with playing in the toilet. Gross. But it was encouraging that he was motivated and wanted to explore. So, today I was working on the computer at the coffee table (now that Dominic is doing so well, I'm hoping to start picking up more work again from my old company) and as usual, he pulled up to standing and peeked his head over and said "hi, hi, hi" in his cute little voice. Then, I noticed his eyes zoned in on the bowl of faux pears adorning the other end of the coffee table. Then, he started taking steps. After about 3 or 4 steps, I jumped up to get the camera. Unlike most times, he actually kept going and I caught it on video. You'll see I'm trying to entice him to keep going with his ball.



I got so emotional and I'm not sure why. He has made so many gains over the past year and I'm always proud of him when he reaches a new milestone. But this time was different. Maybe because he's walking the way you're supposed to. He's always only rolled one way and army crawled in his own "half-using his arm and leg" way and everyone always says "aww, he's doing it Dominic's way." He's walked in his gait trainer and with a walker, but always needed assistance. But watching him today, he looked so "normal".  Yeah, you can tell he doesn't use his right arm and he's still wobbly, but it gave me so much hope to know he'll walk! And he figured it all out on his own! My heart just swelled with pride and all these emotions I had a year ago came rushing back - wondering if he'd ever sit on his own, if he'd walk, talk, feed himself etc. It just hit me how far he has come in LESS than a year post-surgery. Our God is sooooo good and today He really wanted to remind me of that. Ah, God is good all the time and all the time God is good!

TROUBLE!