Stand By Me

After a couple days of "practicing" pulling up to standing, Dominic quickly caught on and officially does it himself - ALL THE TIME. In his crib, in front of the TV, in front of the toilet (while splashing in it), etc. As he masters of these small milestones, Dominic seems to gain more and more freedom. I can tell he loves the feeling of being able to move and go where he wants when he wants. He's actually even started taking a few "side steps" around the ottoman. A little early to call it cruising, but he's starting to get the hang of it. I'm sure it will be no time before he's cruising around the living room!










Last week Dominic got his first "official" haircut. Not sure if you can consider me botching an at-home buzz cut a real haircut, so I'm declaring this his first. Clearly the reason I haven't taken him before is because it costs $20 for a cute young girl to buzz him instead of me. But, whatever. He didn't scream and yell and roll around eating hair. So I suppose it was worth it. And he looks pretty dang cute!

Pre-haircut

I cannot believe it's July already! Not sure where the summer has gone, but between therapies, playgroups, trips to the beach, picnics, parks and visits with family and friends; we have had a busy month! We are heading to Naperville for a week on Friday to spend some quality time with Grammy and Grampa. We spend so many weekends traveling for quick trips here or there that it will be nice to spend several days there just hanging out. Mitchell is looking forward to swim lessons at good old Hobson West Pool where I grew up on swim team and eventually coached and life guarded. We'll probably hit up Brookfield zoo and a couple other places as well.

Yesterday some friends and I hosted a baby shower for one of my besties from college. Afterwards, the hubbs and babes joined us at the house for dinner/drinks/fireworks. It was so much fun and so surreal to look around and see how much we've multiplied since college! These are the girls I rushed my sorority with, stayed up late studying (or not) with, went to parties with, graduated with, planned weddings with and now run around after kiddos with. Times sure have changed :o) It was a fun and crazy night to say the least!

Love these girls!

There's a lot more of us now! And what would be more fitting than playing with fireworks!

Look at these mini-me's. It's the next generation - watch out!

Crazy!

Life has been crazy the past couple weeks. First, I sprained my ankle which thew a wrench in our daily routine. Mike had to take a day off of work because I literally could not move from the couch. It hurt so bad I was sure I had fractured something. Thank God is was just a sprain. Fortunately, with a lot of ice and Ibuprofen, I was up and around a few days later. It's much better now and I'm even back to the gym and running again, which is great. I was so upset when I thought I might have to skip the triathlon in August and the Warrior Dash in September.

Man down

Twinsies!

We've also had much to celebrate the past week or so. Mitchell had his last day of school and we have a whole bunch of fun day trips planned for this summer. So far we have already had a picnic at the airport to watch the planes take off, checked out Festival of the Arts, and had a visit from Mitchell's buddy Ben (and Mamma Katie and little bro Luke). Last weekend we traveled to Naperville and my parents watched the boys for the weekend while we stayed at a hotel and celebrated Mike's 30th birthday. It was fantastic! We lounged by the pool, soaked up some sun and had a fabulous dinner at Morton's Steakhouse. To top it off, we slept in until 10:45! I can't remember the last time (or any time) I've ever slept in that late. This year it was for Mike's birthday, but we do try to get away for at least one night once a year. We realize how badly we need it as a couple to just reconnect and relax together. We always say after a weekend away, "gosh, I really like you". Sometimes in the craziness and chaos of life, we forget how much fun we have together and how much we really enjoy hanging out with each other. We also spent a good part of Saturday in downtown Chicago doing a pizza tour for one of my dear friend's birthday. That was a blast and fun to be in the city.

Festival of the Arts in GR

The Napp boys came for a couple days!

Personalized menu, nice touch Morton's!

Such a fun night!

Birthday boy

One crazy family

We spent Sunday recovering before we celebrated our 7 year anniversary on Monday with dinner at one of my favorite restaurants, Rose's on Reed's Lake. Mike's actual birthday was on Tuesday and he hates it when people make a big deal out of his birthday. So, for his 30th, I decided everyone needed to know! I snuck into his office on Monday night and filled his office with streamers, 200 balloons and birthday signs. Needless to say, everyone in the office knew it was his birthday. Mike woke up to breakfast in bed that Mitchell helped me make and we all went to On The Border for his birthday dinner. So much eating! Tomorrow we have the Summer Stroll for Epilepsy which, naturally, starts with a breakfast. Great, more food. Then we will walk the River walk in downtown Grand Rapids. We're all looking forward to this event and I am so proud to say that I exceeded my fundraising goal and raised almost $2,000. Thank you to everyone who donated, we really, really appreciate your support. The week of celebration will come to an end this Sunday for Father's Day. Mitchell, Dominic and I have a few surprises up our sleeves for Mike this year! Should be a fun day. Seriously, I haven't eaten this much in my entire life. I think we ate out 6 nights in a row, and that doesn't include tomorrow or Sunday! It's been a fun week and I guess it's worth the 5 pounds I gained :o)

Surprise!

Now that it's summer, Dominic's PT/OT schedule has changed from Tuesdays and Thursdays to back-to-back on Thursdays. Since Mitchell is out of school, we have a sitter that comes to hang out with Mitchell Thursday mornings. When things changed I sort of freaked out because I always took Mitchell to The Nanny on Demand when Dominic had therapy. But it's out of the way and doesn't even open until 9:00. So, we are SO happy we found our sitter. She is the best. She has also sat for us several times so that Mike and I could go out. It's such a blessing that we can leave the boys with someone and not worry about Dominic. A year ago there was no one I felt comfortable leaving Dominic with, other than our parents. But even that made me nervous because he was having so many seizures. I am loving this new sense of freedom!!!

This week in OT Dominic got measured and fitted for a custom glove that will help keep his right hand open. He doesn't really have a problem with a clenched fist, but when he crawls, he tends to keep his hand bent under and pushes off the top of his hand/wrist instead of his palm. This glove is totally custom and required a lot of measurements. It's made of Lycra, so it will work like his SPIO vest, providing input to those muscles to help keep his hand open and int he correct position and alignment. They have been taping his hand and wrist with Kinesio tape, which works great, but because his hand gets sweaty, the tape comes off after a couple days. This is more of a permanent solution. It will be several weeks before we receive the final product, but I think it will be awesome once he gets it.

Similar to what D's glove will look like

He was back on the Total Gym this week working on leg presses in PT. It amazes me how strong his right leg is and that he can do one-legged presses with it. I hope to see him walking in the next few months, but I know it requires more than just strength. He needs to be able to coordinate the weaker side of his body with the stronger side. And figure out how to compensate for that weaker side. I don't want to rush him, but man is he getting heavy! On a positive note, he is SO close to pulling up to standing on his own. He gets his leg under him and halfway stands but gets tired and sits back down. I wouldn't be surprised if it happens in the next week or two. Slowly but surely, he'll get there!

Walk This Way

We've had a fantastic couple weeks. We had a blast celebrating Mitchell's birthday and an awesome Memorial Day weekend in Naperville. Mitchell was king for the day getting breakfast in bed, tons of new toys and his first "big boy bike", which he likes to take it for a spin almost daily. We had a fun birthday dinner at Mickey D's and topped off the night with cake. This past weekend Mike and I attended a wedding of one of my friends on Saturday in Naperville and then we lounged by the pool and grilled out on Sunday with my family. The weather was great and it was so wonderful to see so many good friends, most of who I grew up with in church. We have since all moved away from Naperville and don't get to see each other much. It was a wonderful reunion and celebration.

Just an update on how the sippy cup is going....

Happy Birthday to our bud!

Trying out his new bike

Blessed to know these girls!

Swimming is one of his favorite things!

I can't believe summer is upon us. It is so great to see the sun still shining at 9:00pm. Mitchell's last day of preschool is tomorrow as well as his art show. This weekend we're home and Mike is hoping to enjoy some golf with his buddies while I want to tackle a little more yard work. Our weekends are already filling up pretty fast, but one in particular we are looking forward to is in a few weeks. Our family will be participating in the Epilepsy Foundation's Summer Stroll for Epilepsy on June 15th.  It should be a fun morning raising money for a great cause. We feel incredibly blessed to be in such a good place right now with Dominic. We know there are so many other families that struggle daily with debilitating seizures. We are constantly reminded what a miracle our little man is.  Knowing this makes us want to do even more to help find a cure for Epilepsy and for those that aren't as lucky as Dominic.

  

If you are interested in donating, you can follow this link! 

Any amount would be appreciated!

Dominic continues to dominate at PT and OT. He is getting much more confident walking. He's gotten to the point that he can walk just holding my two fingers. He's a little wobbly, but he's getting faster. He has graduated from the gait trainer to a walker at PT. He's just starting to get the hang of holding onto the walker to support himself. This week Robin put him on the Total Gym machine and had him do 40 leg presses! I was shocked. I initially thought she was crazy and there was no way he could do leg presses, especially on the right side. But he did and he was awesome. Didn't even fight her. Hopefully doing those will continue to strengthen his legs.

Rockin' it at PT with Robin

So Much to Celebrate

Ah, we are LOVING this gorgeous weather! We are all so happy summer is on it's way. We are enjoying the sunshine and longer days. Life is busy as usual around here. I had a wonderful Mother's Day that included breakfast in bed, gift card for a pedi, a nap in the sun, and dinner at a Japanese steakhouse. I am the luckiest girl I know to have these three boys in my life. While they can all be challenging in their own ways, they are the best, and they're mine :o)

This weekend we are celebrating FOUR years of Mitchell! We can't believe how time has flown. He is the funniest, goofiest, wildest boy I know. And I can't imagine my life without him.  He has really impressed me this past year with his patience and resilience after Dominic's surgery. It was a difficult year for him too, and I'm so amazed by him. I thought for sure he would harbor resentment and jealousy. But he hasn't. He truly loves his brother and as a Mama, it melts my heart to watch them interact. He is actually super protective of Dominic and often tells me "Mom, stop yelling at Dominic. He's sorry!" I remind Mitchell I'm not yelling, just telling him "no", but how funny is he? Such a sweet soul.

He was so excited to take in his vanilla cherry chip cupcakes to school for birthday treats today and he's pumped for McDonald's birthday dinner on Sunday :o) Oh, it's the little things in life, right?

Such a good big brother!

My goofball

Mother's Day dinner

Dominic is doing well, after a bout with hand-foot-mouth last week. He handles sick pretty well. I wasn't really sure what was wrong with him except that he spiked a 103 fever. Then the he started getting blisters all over his body. But I guess after all he's been through, this is nothing for him. He's feeling much better and is back to getting into everything. We call him "The Inchworm" because that's exactly what he looks like moving across the floor. And he moves fast! He's also curious. I was surprised to find him sitting in the hallway holding the carbon monoxide monitor. I have all the outlets covered but never thought I'd have to worry about him pulling the monitor out of the wall, especially one-handed! I've had many people - doctors, therapists and friends tell me that if he had full use of his right side, I'd be in big trouble. His PT told me today I'm still in big trouble, he's just taking longer to get there. She's right, he's a strong, stubborn little thing. But I'm sure these are qualities that will help him through life.

Workin' it at OT

Met Dad for lunch downtown. Love being able to eat outside again!

Dominic's most recent progress is pulling himself to his knees. He pulls up on everything - toy bins, coffee tables, ottomans, entertainment centers - you name it. This is where his curiosity comes in. He wants to see what's going on. At this point though, he get stuck because he's not really sure how to pull to stand with a weak arm and leg. So, we're working on it and he'll get there. He's taking amazing steps (pun intended) with his walking as well. He doesn't like to sit still or be held much, he wants to walk so badly, he's just got to build up his butt muscles more. But he's got the stepping down and you can tell he really likes to walk.

Believe it or not, my almost 20-month-old STILL refuses a sippy cup and is on the bottle. He's been attending a feeding class at the Campus Early Childhood Special Ed school with his Early On OT and a feeding specialist. Not only will Dominic not drink from a sippy, he also only eats about 10-15 foods. I'm not super concerned because he's by no means malnourished, but it's annoying. He can't be 3 years old and still drinking from a bottle. Plus, it's not that he can't, he just won't. He doesn't like me, or anyone else for that matter, trying to make him do something. The only way he'll eat his veggies is pureed from a spoon, because that's how he's always had it. He'll yogurt with anything in it because he loves yogurt. But put watermelon, strawberries, kiwi, grapes, corn, green beans - heck any fruit or veggie, on his tray and he just throws it over the side, looks at me and says "uh oh". And don't get me started on meat - no kind of meat. Not even hot dogs! What kid doesn't like hot dogs? Again, here is Dominic's stubbornness coming out. The feeding class breaks for summer but I'm assuming we'll need to restart in the fall. Until then, I am most grateful we got rid of the carpet in the dining room as most of his food ends up there. Much easier to clean than the carpet :o)

Here comes trouble!!

On a final note, someone posted this on Facebook yesterday and I just loved it. It makes me look at the c-shaped scar across his scalp a little differently now...

Never be ashamed of the scars that life has left you with. 

A scar means the hurt is over, the wound is closed, 

you endured the pain and God has healed you.

Poster Child

Our family returned this past weekend from an amazing Florida vacation. We had wonderful weather, time with Grammy and Grandpa, time with friends and some great time as a family. We had fun playing on the beach, splashing in the ocean and swimming in the pool. Not to mention trips to Rum Bay for lunch and Coconuts to see Captain Red Beard and eat ice cream. It was wonderful to be able to take a family vacation, totally free of the stress of Dominic's illness. A year ago, such a trip was not possible. Here's a few pics from the trip!

This kiddo LOVES the beach and ocean!

Walking on the beach

Our fam

Some new friends

Mitchell is getting to be such a little man

Such a little love bug

Hanging in the hammock

First meeting with a turtle

My three boys

Sun, sand, and surf

What a way to end every day!

Now that we're back, our week started off busy with an appointment with Dr. Arndt and his ENT doc. Dr. Arndt hasn't actually seen Dominic since the week after his surgery. Our last neuro appointment was with the Physician Assistant in January. So, he was quite surprised by Dominic, to say the least. When the nurse brought us in, she was concerned he wouldn't be able to sit up by himself on the scale to be weighed. I looked at her and told her that wouldn't be the problem, he'd most likely crawl right off. She couldn't believe it! When Dr. Arndt saw him he could not stop smiling. He was shocked to see him bring his right hand up to his mouth and keep both hands mid line. He was thrilled to watch Dominic walk to him (holding my hands of course). And was very impressed, when asked what a cow says, Dominic responded "moooooo". It was really encouraging to see his neurologist so excited and impressed with his progress. I've seen him make great strides, but Dr. Arndt's reaction was priceless. He put Dominic at about 9-10 months in regards to his gross motor skills and about 10-12 based on his verbal skills. I was happy to hear that because he said it was above and beyond what he expected at this point after surgery. There is always a worry that after such a major brain surgery that some things won't come back or that there is some seizure activity in the remaining hemisphere that could hinder development. But Dominic is right on track, if not ahead of where they expected him to be. Not to say this still doesn't bother me a little. I know it shouldn't, considering how far he's come and where he could have been, but it's hard to hear that developmentally your 19 month old is around 9-12 months. But I suppose Dr. Chugani was right when he said to think about his surgery day as the day he was born and that would make sense for where he's at. But for that second it's hard to hear. Then the moment passes and I go back to praising God and being grateful he is doing so amazingly well. When Dr. Arndt got up to leave the room, he just looked at him and said "he's amazing. He's like the poster child for hemispherectomy!" I'll take that!

We head to the Nephrologist on Thursday for a kidney ultrasound and then meet with Dr. Cai. Hopefully nothing has changed and the stones haven't grown. Dominic would be thrilled to go off the Bicitra. We then end the day with PT. Back to our busy life of appointments! Ah, what I wouldn't give to be back on the island right now, laying on the beach, sipping a Corona...

Step By Step

Dominic really likes to move these days. He's making some good progress in his gait trainer. Both at home and at therapy.  It's been fun to put him in it outside when it's nice because he has more room to roam. He's also a crazy man crawling. Since he has a hard time keeping his right arm in front, he actually has rug burns on his poor little hand! I think I may have to start putting a sock over it.

Here is a video of Dominic in his gait trainer in the driveway. Yes, he is wearing footie pajamas with shoes. Classy, I know.



And after 18 months he is FINALLY saying "Mama". Now, he doesn't really refer to me as Mama per se, but has never really even babbled "mamamamama" before. So, that's the first step, right? He's babbling all the time too. And while I can't understand what he's saying, he sure seems to know what he's talking about.



The countdown has begun and we are in single digits until our family vacation! We are so excited as we haven't had a family vacation in years. Mike is really in need of some time off. With Dominic's surgery, he was out of vacation days last year. He hasn't been to the Island in 2 1/2 years. Mitchell and I are so excited we're almost done packing! Mitchell has everything he needs packed in his bag - DVD player, movies, snacks and his blankie. We'll have a pretty busy trip, spending a few days with my parents, a couple days with friends, and Mike is going to visit a client while we're there. Should be a blast!

My How Time Flies

As Mike and I were bathing the boys the other night, it dawned on us that Dominic has been seizure-free longer than he was seizing. It's so hard to believe because those eight months felt like years. Maybe that's because the seizing never stopped. It went on 24 hours a day so the days blurred into the nights and back into days. We seemed to spend more time in hospitals, doctor offices and labs than we did at home. We seemed to change or add medications every few days and while Dominic got physically older, he seemed to be slipping cognitively farther and father behind. Those were eight very dark months of my life that at times seem so long ago, but sometimes I wonder if I'm in a dream and I'm going to wake up back there. I'm reading a book right now called I Will Carry You and it's about a woman who was told during her pregnancy that her baby would not survive. She continued with the pregnancy and got to spend two hours with her precious baby before she passed. It's an incredibly tragic, touching and beautifully written book. While she's upfront and honest about the pain, she continues to praise God for who He is and worship Him through everything. It brought me back to the darkest days of Dominic's illness and I remember that feeling. I remember needing Him to get me through the day. I remember needing Him just to get out of bed and face the reality of my situation. I remember grieving the loss of a "normal" and "healthy" child and begging God to heal him. I would cry to Him, face buried in my tear-soaked pillow, "Why are you doing this? Why are you allowing your child to suffer? Why won't you heal him?" As strange as it sounds, I miss those days. Not for the pain, anguish and worry. But because I had never felt closer to God. I spent so much of my time in prayer and His word. I needed Him. Now, eight months since our nightmare has ended, I don't need Him the way I did then. I feel like I've finally gained control of my life again and I'm happy and enjoying every moment. Of course, this is a false sense of control because all things are ultimately in His hands. But I am able to do things I want to do again, go places I want to go and and am free to make decisions that don't revolve around Dominic's illness. It's funny though, when I have the freedom to do what I want, I don't choose to spend a lot of time with God. My first thought when I open my eyes in the morning isn't "God, be with me today. Give me strength. Be near". It's "why are my kids up so early? Is the coffee on? What time is that class at the gym?" Yes, of course I still pray. Yes, I am grateful every day for Dominic's healing and continued progress. Yes, I look into Dominic's deep blue, soulful eyes and thank God daily for what a miracle he is. But I miss that closeness with God. I miss that longing and desire that comes when we are at our most vulnerable. And I know God misses it too. That is what he wants of us, craves of us. In my daily devotional yesterday, I read "I meet you in the stillness of your soul. It is there that I seek a commune with you. A person who is open to My presence is exceedingly precious to me. I see you trying to find Me; our mutual search results in joyful fulfillment". When everything is taken from you, all you have left is God. And all you can do is cry out to Him for help. But when things are going great and your children are healthy, your husband gets promoted, your planning wonderful vacations and everything seems to be going according to (my) plan; God seems to get lost, or at least moved down lower on the list. He doesn't come first anymore. We pray and thank him for the blessings, take the reigns and then we move on our merry way.

All of these thoughts struck me when I started reading this book. Maybe because it brought back the flood of emotions those eight months brought that I have seemed to repress. But the way she writes touched me. She's real and honest and incredibly faithful.  It has made me hungry for Him again. It scares me to say it out loud, because I'm afraid of what it will bring, but I want that dependence again. I want to be brought to my knees because I can't physically stand without Him. And yet I don't want to let go of control and leave this good place I'm in.  I know inevitably the storms will come again. So I guess for now, all I can do is enjoy the sunshine, thank Him for this time of respite, and try with all my might to seek Him and draw closer to Him.

This ended up being a much longer and more emotional post than I had planned. I really just wanted to shout from the rooftops that Dominic has been seizure-free for 8 months! But then the words just sort of started pouring out of me and I couldn't stop my fingers from moving on the keyboard. That is one of the best things I have found about keeping a blog - it's great therapy to write down my thoughts and feelings. It helps me process, learn and move forward.