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.

G.I. Joe

Dominic is officially on the move. He is CRAWLING! Well, by crawling I mean army crawling. But that is more than his PT or OT expected of him. I can imagine it would be hard to crawl when you don't have much use of your right side. So, I am thrilled with my little G.I. Joe! He still needs to figure out how to keep his right arm in front of him, but today he crawled about five feet to get what he wanted in under a few seconds. And he was thrilled to show off his new moves at PT and everyone was impressed. We were all thinking he'd never crawl and just go straight to walking. He probably won't ever crawl the conventional way, but as with everything else, he'll do it on Dominic time and the Dominic way. I'm just really proud of him for figuring it out on his own and how to compensate. He's a stubborn and driven little boy and I know he'll be able to anything he wants if he sets his mind to it!



Aside from that exciting news, life is usual around here. We got to enjoy the last warm day this weekend before it turned cold and rode bikes to church. It was great but I was sporting some back sweat for the people in the pew behind us. My mom also decided to pop up for a visit and we've been having fun with the boys and her and I enjoyed a girl's night out to see The Hunger Games. Woop woop!

Breaking out the bikes

Love surf and turf Sundays!

Backyard fun!

Lunch with Grammy

We are heading to the East side of the state this weekend. I am joining my mother-in-law and sister-in-laws for a women's retreat. This will be much needed alone time with The Man upstairs and I am really looking forward to it. Mike will have a boys weekend with my father-in-law and I'm sure visit with cousins as well. Should be a great weekend!

On The Loose!

Life has been crazy this week for us. With this beautiful spring weather brings spring projects! We had been talking for years about getting new hardwood floors in our dining room and refinishing most of the downstairs' floors. Thanks to tax season, now is the time! I'm super excited but this has been quite the process. Everything has been moved out of the two bedrooms, hallway and dining room and is sitting in either our 3-season porch or living room. Besides the fact that I can't find anything, we're sequestered to the basement, and the house is a mess - we can't access our bathrooms! So, when Mitchell informed me he had to go number two yesterday, I threw the kids in the car and zoomed up to the library up the street to use the public restroom :o) So, we've made it work, but I'm ready to be done showering and getting ready at the gym every day. Tomorrow is the final coat of finish and they'll be done, so Saturday we can have our house back!! I'm really excited, especially now that Dominic is spending more time in his gait trainer, he'll have more room to roam.

New floors in the dining room!

Refinished floors in the 2 bedrooms and hall

Speaking of roaming, Dominic is a man on the loose! His PT put him in the 'Mustang' today and he loved it. He needs to work on using his right foot more because he tends to bump back and forth into walls because he's only pushing with his left foot. But he'll get there and he seems to LOVE being able to move on his own. They're working on getting him a Mustang of his own!

On a totally separate subject, I saw this link about Dr. Arndt and wanted to share it. We just love him and are so happy to see that he's bringing more attention to West Michigan and to DeVos Children's epilepsy program. Mike thinks I should attend the event and I'm thinking about it...

http://www.woodtv.com/dpp/eightwest/Epilepsy--help-for-parents 

We have really been loving this awesome weather. But I'm sure it won't last and we'll be blasted with another blizzard. But, we got Dominic out on his AmTryke tonight for a spin. He loves the tryke but is NOT a fan of the helmet. I guess for now he doesn't need it. It will be a lot of fun to take him out on the tryke this summer.

Yeah for sunshine!

He does NOT like the helmet. I guess flashbacks of his crainial helmet?

Thanks to Curious George, Mitchell was determined to make
an automatic car wash for his cars and trains

Mom with her Dom

This weekend we're home the boys will be cheering me on while I run the Irish Jig. Should be a gorgeous weekend for a race! Then we are hoping to feed Mitchell's obsession with Dr. Seuss and take him to see the Grand Rapids symphony's production of Green Eggs and Ham. Saturday night Mike and I have a date...sort of. We are going to a Laughfest event with some people from work. Should be a lot of fun.

Mustang Sally

This is a short post, but very exciting for us! Dominic has been using an old gait trainer his PT lent us for use at home. But it's old and he can't figure out how to move forward. Yesterday at physical therapy, Robin tried him in "The PONY". It's a newer gait trainer. He did AWESOME! He was all over the place - forwards, backwards, side to side, turning around. It was incredible. Robin was speechless. She couldn't believe it! Neither could I :o) It really convinced Robin that Dominic needs his own new gait trainer. There is a certain one she wants to get called "The Mustang". It's pretty sweet and newer than the PONY. I swear it's on hydraulics or something. It's expensive though, and we'll have to go through all the insurance craziness which can take several months. But it's so thrilling to see Dominic move around and to see him so excited to be moving.

The "Mustang" Gait Trainer that Dominic will hopefully have in about 6 months

Well, that's all! Just wanted to share. My Flip video cam ran out of battery, conveniently. So I didn't get him on video, but here are a couple pics of him ridin' the PONY!

Getting all situated with Robin

Ready to Rock n' Roll!