Last Hospital Visit!

So, I haven't written a blog post in awhile - things have been nuts around here. But, I wanted to share that this week Dominic and a couple days at DeVos for his extended EEG. Things went great and we were actually released a little early! The Neuro on call said that he saw absolutely nothing abnormal and there was no need to stay the full 48 hours! Amazing! So, at this point the last med he's on is Keppra. Now that the EEG is done, we'll discuss with our Neuro here and Dr. Chugani to come up with a plan to wean him off the Keppra. For those of you who have followed Dominic's story from the beginning - this is absolutely a miracle! When he was diagnosed with Infantile Spasms, I thought our world was coming to an end. Even while we were in the hospital this week, our nurse (who has been a nurse for 30 years) told us that 20 years ago the head of Neuro told her that Infantile Spasms was one of the worse diagnoses you could give. Science has come a long way since then, but still, most children are not as lucky as Dominic. It's really an incredible feeling when a neurology nurse looks at your little boy and gets goosebumps watching him walk around and talk. Still can't believe how fortunate we are.

Always our happy boy!

Now we're getting restless...

Lunch date!

Reading with Grammy

See ya DeVos!!!!

This was a very different hospital experience. It brought back a lot of horrible memories that I haven't thought about it a long time. But it was so great that my biggest worry was keeping my 2 1/2 year old entertained in a small room. There were so many hospital stays where we just waited and waited and waited for news - usually bad. From seizures to viruses, to strokes, to mitochondrial disorders to brain surgery and just about everything in between. It's pretty incredible that all of that happened in the span of 10 months! And that being the first 10 months of Dominic's life. He sure has come a long way!

In other news, we are taking a small break from OT and PT. He had his gait pretty much corrected and a new AFO ordered, so Robin doesn't think he needs PT at this point. He's getting a new AFO made of carbon fiber that is more flexible and has been shown to significantly improve the limp and gait of a child with Hemiplegia - he will be the first kiddo in GR (at least through DeVos, that will be getting one!). Check out the video below of him wearing it! As he gets stronger he may have some growth spurts that will throw off his gait or cause tightness. She said most kids with Hemiplegia at some point go through serial casting because of tightness in the weaker foot/leg. But we'll cross that bridge when it comes. He's also at a point in OT that he's not making much progress. Currently, he wears his glove at night to keep his hand open and loose, but needs to work more on using his right hand during the day. I'm looking forward to this break, just to give us a little more down time. It won't last forever, so I'll take it now. We are also preparing to write his IEP (individual education plan) for preschool next year. I STILL can't believe he'll be hopping on a bus and heading off to school. But I think it will be such a good thing for him!

While I know Dominic still has a long road ahead, writing this post feels like we're coming to the end of this crazy journey we've been on the past 2 1/2 years. To think that Dominic would be seizure-free and off all meds at two years old seemed utterly impossible. Every single day he amazes me. He is the happiest and most joyful kid I have ever seen. We are incredibly grateful and humbled by the prayers and support of friends, family and strangers over the past couple years. We have learned that God works in mysterious ways and can use even a 2 month-old baby plagued by intractable seizures to touch so many people. We have experienced incredible sorrow and loss as well as moments of happiness and joy. While it would never be a cross we would have chosen to bear, we have seen the way God has repeatedly blessed us through this trial. Thank you all for sharing in this journey with us - for crying with us, praying with us, holding us, supporting us and rejoicing with us. We are eternally grateful!

First hospital stay - 2 months old

Happy and healthy 2 1/2 year old!

Ready for Spring

We have been busy in the Dunlap household! Since the last blog post Dominic has been officially walking everywhere! He is also talking up a storm and able to communicate very well. He seems to have had quite a growth spurt in language and gross motor skills and we couldn't be more thrilled! Here are a couple videos of him walking and reciting the alphabet (ignore the fact that you see his butt in the bath and Mike's loud yelling at the end :o)




A couple weeks ago I went to Florida with my mom for four days which was AMAZING! It was great to spend some quality time with her and enjoy some time sipping coffee and watching the waves. It was unseasonably chilly, but still gorgeous and there was no snow! I think it was some good quality time for Mike and the boys too. He just told me I'm never allowed to leave again :o) They are busy boys!

 Dominic started up with PT again a few weeks ago since Robin noticed he has a wicked limp and his hip/right foot turn out. She's working on straightening it out through Myofascial release (soft tissue massage and stretching) and taping his leg with Kinesio Tape; along with some work on the Total Gym doing leg presses :o) Just three weeks ago he was only taking a few steps at at time, now he's walking everywhere. He still stumbles and trips since he's a little off balance, but he's figuring it out.

Working on walking over steps at PT

He's continuing his work in OT as well. We finally got his DMO brace (Dynamic Movement Orthosis) a couple weeks ago and he seems to be doing well with it. The day we got it his Orthotist and I tried to put it on him together and it took 40 minutes! He got it through Mary Free Bed and it is the only place in GR that provides them. They get them from Boston Brace out East and they are completely custom made. So, of course, since he's only the second patient to receive this orthotic at Mary Free Bed, 9 other orthotists were in the room watching. I walked out with sweat dripping down my neck and back; I was so nervous with all those eyes watching me. But since then, I have become a pro. I can get that glove on him in under five minutes every morning. Nailed it!

His DMO glove (ignore the dried yogurt :o)

Sometimes he looks like Spiderman with his glove on

Dominic is also still seeing his Early On OT and we are preparing to write his IEP (Individual Education Plan) for next year because my sweet little Dominic is going to preschool!!! He will be attending Ken-O-Sha, which is one of the Grand Rapids Public Schools that has a huge Special Ed program. He will have a small class with emphasis on OT and speech. The campus he is attending is for kids who are intending to attend mainstream school eventually. We were actually there this week for a play group, so I got to see the classrooms and where he'll go. They'll even have the mini school bus come pick him up at our house. I'm really happy for him and think it will be great but I can't believe he's going to school in the fall!

Additionally, Dominic is still seeing Miss Denise, his speech therapist. She comes every other week and we are working our way through the Hanen Program. Dominic seems to respond well to everything we're learning and has been much more communicative. Lots of homework for me though! Dominic and I are also doing a Music & Me class at the Kroc. I was hoping this would be some good time for me and him together and get him to engage more with others and an instructor. Plus he loves music.

We had a few appointments this month and all looks good with his kidney stones. Our 48-hour EEG is scheduled for April 8-10 at DeVos. If all goes well and looks normal, Dominic will be taken off Keppra and be done with seizure meds! Amazing. We still can't believe how far he's come and what a miracle he is. I am thankful to God EVERY SINGLE DAY for his faithfulness. We are truly beyond blessed. It has been so long since we were in that dark time of our lives that sometimes I forget how awful it was. God has shown us incredible grace and love; I don't know what I've done to deserve this incredible life. But I am so grateful for it.

Successful ultrasound - no tears this time

Spending the day at DeVos

In other news, I decided that I'm not busy enough and that I should get a job (I'm kidding of course - about being busy, not the job). It sort of fell into my lap and after praying about it, I feel like it's something I want to do. My freelance work has slowed down and I'm kind of over it. It's getting harder to get work done when the boys are awake because they're so busy. So that leaves evenings and I just don't want to stay up till midnight working every night. So, I feel like God tossed this into my lap. I will be working at the Salvation Army Kroc Center, which is the gym we go to. I'm there almost every day and in passing said I should work there since I'm there so much. The fitness manager said I should work there and if I was interested to submit my resume. So, here I am! I start my training Monday! When I talked to Mike about it, the one thing we decided is that I didn't want it to interfere with our daily life and I didn't want to worry about childcare. So, I am working one weeknight and one or two days of the weekends. I'm just working on the fitness floor, so it's not super high stress and no work to take home. I'm really looking forward to it because of my passion for health and fitness and look forward to encouraging others. Plus, I love being there! It's a fantastic facility with positive and amazing people. I'm super excited to be a part of it!

So, that's what's been going on with us! We keep busy! We are ready for Spring in this house and sick of the snow! We're done with sickness and being stuck inside. Mom is sick of snow days (we've had 5 I think). Mike said once it's March he refuses to shovel the driveway anymore, so fingers crossed we don't get another huge storm. We have kept busy with play dates, Family Nights at the Kroc, and swim lessons. Mitchell has been counting down the days until our trip to Grammy's beach house in June. We are having a big family reunion with my Mom's family and it should be a blast. Next weekend Mitchell and I have a Mother/Son date night at the Kroc and then Mike and I are also going to a Laughfest event to see Joel McHale - who we love! This was our Valentine's Day gift to each other and we're looking forward to a fun night together. Hurry up Spring!!!!!

He's got quite the personality these days

Brothers bonding

Walk On

Wow, two posts in two weeks! It's been awhile since that's happened. I usually don't post anything if there is nothing new to report. Therefore, I have news! Dominic is walking!! Not all the time, he still knows scooting is much faster. But he is walking up a storm! Here is a short video from the Neurologist office this past week.



As I sit here writing this, he is walking towards me. Today he moved from the TV in the corner to more than halfway to the dining room. This is by far the farthest he's walked on his own. It's so cute because you can see how proud of himself he is!

In other news, we had a pretty busy week. Starting OT on Monday - he had a good day and didn't fight too hard. Still working to get him to use his right hand which is doing more of. Sarah said he was playing the xylophone with both hands (I don't know this first hand because I'm not allowed back there anymore. Boo. I guess I was too much of a distraction for him). Tuesday we had a renal ultrasound, blood work, and a Nephrologist appointment. All is good on the kidney stone front, nothing has changed. We also saw the Neurologist on Thursday. Not going to lie, I miss Dr. Arndt a lot. But considering how well Dominic is doing, I'm very comfortable seeing another doctor at DeVos from now on. Dominic has been seizure-free since his surgery, which has been exactly a year and a half today! When we saw Dr. Chugani in the fall, he said once he has an extended EEG and everything looks normal, we can take him off his last seizure med (Keppra). So, we are scheduling the 48-hour EEG at the EMU (Epilepsy Monitoring Unit) here in GR sometime in April! I can't even imagine what it will be like to have him off all seizure meds! Two years ago at this time he was still having Infantile Spasms. It's incredible how much has changed in past two years. All I can say is PRAISE GOD!!! So, we're looking forward to the EEG in a couple months.

He was a champ for the ultrasound. No tears this time!

Fun times at DeVos

This morning we had a new PT evaluation. Since we took a break for a few months, Dominic needed a whole new prescription and evaluation. While he is walking quite a bit, he has a definite limp and definitely favors his left foot. It could be that his hips are tight or because he scoots and leans to the left side so much, his butt muscles and hip muscles are uneven. So, she gave me some stretches to do at home and they will focus on that when he starts up his weekly PT sessions again.

Mitchell has had some rough times of his own! The poor kid got his mother's teeth and got is fourth and hopefully last baby root canal this week. He's also had four fillings in the past month. The poor thing has four silver crowns!!

And then there's me - the gimp. Ankle is doing much better. Still swollen and black and blue, but feeling better and I was off crutches this week. I even made it back to the gym. I was going stir crazy!

This next week is pretty low key for us. We are FINALLY having my birthday dinner at Ruth's Chris steakhouse on Thursday after Mitchell's school conference. Then we are excited for the Hope-Calvin basketball game this weekend (we attend each year with a crew from PNC). Should be fun! But I am super excited that I will be in Florida TWO weeks. My mom and I are taking a quick trip to their place on the Island. Mike has Monday off, so it will be an amazing long weekend in the sun with my mum. Can't wait!

New Year, New Things to Do

It's been awhile since my last post so I thought I give a quick update. For the most part, all is well here. We had a wonderful Christmas season - spending time with both the Dunlaps and Jurgensens. The boys were spoiled this year and loved every moment. The big gift was the bounce house ball pit that currently takes up the majority of our basement. But it's great fun and helps the boys get their energy out during these long winter months.

We had a wonderful Christmas!

Mitchell is back in the swing of things at school and is excited for a field trip this Friday. Dominic is back at therapy and after 3 month hiatus, he is going to be starting up PT again. Robin noticed his gait when he was working with Sarah last week and is concerned his hip is a little tight. He has a very pronounced limp right now. When he stopped seeing Robin, he had a pretty even gait. So, back to work!

Speaking of walking, Dominic continues to get closer and closer but I know it will take awhile before he walks. He doesn't quite trust his right leg and doesn't have the balance yet. But just yesterday he took six steps by himself before he sat down. So, he is progressing and I have no doubt he'll get there soon enough.

Dominic is also now seeing a speech therapist. She comes out to the house on Wednesdays and we are following The Hanen Program. This means I have homework I have to do :o) But I think it will be good for him. Both Mike and I have noticed he's made huge strides in just the last several weeks in speech. He can communicate what he wants now, which means a lot less screaming.

Dominic is also showing his true 2-year-old colors. He has gotten pretty feisty and lets you know when he's not happy or doesn't like something. He constantly takes things from his big brother and throws a tantrum when you tell him to stop or take it away. I guess this is typical behavior, so that's good to see, but what happened to my content, quiet baby? I supposed he's growing up and not controlled by heavy medication anymore! All good things :o) I'll take it and I do think it's good to see some fight in him. He'll need that as he gets older. He also FINALLY drinks from a sippy cup!! Not a lot and not at every meal, but he does without a fight. He also now feeds himself with a spoon! At this point it's just yogurt, but I think that has more to do with his picky eating habits. About half of it makes it into his mouth but he's trying and doing pretty well with it.

This kid has come to love chips!

His new favorite food, especially when feeding himself!

We're all doing well aside from the fact that I sprained my ankle for THE THIRD TIME this year. I'm one of the clumsiest people alive, but this is getting ridiculous! We spent Mike's day off yesterday in the ER getting x-rays. At least it's not broken, but it puts quite a cramp in our lifestyle. I can't pick up Dominic and getting them dressed, fed, bathed etc. is difficult to do without Mike. So, he had to work from home today to help his gimp wife :o) Hoping to be back up and running soon! Especially since I have a weekend trip to Florida planned with my mom in February! Would not be fun (or possible) to be limping up and down the beach.

Ouch!

At the end of this month we see Peds Neuro and the Nephrologist. I'm hoping at the neuro appointment we can schedule the 48 hour EEG that will determine if we can wean him off the Keppra. Other than that, it's a low key month of doctor appointments!

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!