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!

Typical Toddler

I haven't had too much to post about lately but I do have a few new pics of Dominic. He's progressing nicely. Still no crawling or walking, but he is moving all around. He can go from sitting to lying down to flipping over onto his belly and pushing back up to sitting. He can even get up to all fours on his own! He doesn't stay there long, but he's figured out how to do it! He loves to give kisses, and by kisses I mean he devours your whole face and covers you in slobber. But it's sweet. He babbles all the time too. He does say "Dada" now and while I don't think he's actually trying to say "I did it", he says it ALL THE TIME. So, he's trying to say something and it comes out sounding exactly like "I did it". It's hilarious.

His Kissy face

I didn't have the video camera, but here is a series of photos taken within about 2 minutes to catch how much this kid is moving!

Up on all fours on his own!

He's really turning into a typical toddler (well, except for actually "toddling" around). But we've gone out to dinner a few times over the past few weeks and he's grabbing menus and tossing them off the table. Grabbing and eating crayons. He sneaks the salt shaker a starts shaking salt everywhere. He even figured out how to get a box of candy hearts open on his own! I've realized I really need to keep my eye on him all the time. He might not be walking or crawling everywhere, but he's moving and is just as curious as any other 17 month old.

My little valentine

It's really fun to see Dominic and Mitchell interact these days. Because Dominic is stronger and more mobile, Mitchell has a lot more fun with him. He loves to tickle him and sort of wrestle around with him. And Dominic thinks Mitchell is the funnest thing ever. It's really sweet. I was worried for so long that Mitchell would resent Dominic for all the attention he got the past year, especially with his surgery. But he doesn't at all and actually adores him. I'm sure they'll fight as they get older, but for now they're very fond of each other.

Brothers :o)

We're all still battling colds around here. It seems like we all have colds for the entire winter season. I'm ready for Spring! Excited we're almost into March! Since we were all a little under the weather after a busy weekend visiting family, I decided we were going to have a pajama party day. We're staying in pajamas all day and we made a big bed on the living room floor out of pillows. We're just watching movies, reading books and relaxing all day. Sounds good to me!

Pajama party!

Mover and Shaker

We've had a busy few weeks! Between a couple illnesses and busy therapy schedules, we are as crazy as usual. We've also grieved the loss of my grandmother and Mike, Dominic and I flew to Kansas last weekend for the funeral. Mitchell had fun with his cousins and Aunt and Uncle. It was very hard but the service was beautiful and a wonderful tribute to the amazing woman my grandmother was. It was also very nice to spend some time with my mom's side of the family.

Waiting for our plane

Mike and Dominic at the funeral

Some of the Blow family

The four Blow Sissies ( with cousin Steph filling in for Aunt Nancy)

Dominic is doing great! He's making some great progress with his walking and is taking steps on his own (holding my hands, of course) all the time! He's moving around a lot in his gait trainer and enjoying being on his feet. He's also getting really good and moving himself around. No, he's not crawling, but he probably won't. He does however turn himself around both sitting and on his tummy. I wouldn't be surprised if he started scooting around soon. He's also babbling all the time and has a few words - ba ba (bottle), cheese, hi and bye-bye. No Mama or Dadda yet, he's making progress!



Here is a video of Dominic at physical therapy working on walking/stepping. Yes, that is an ankle weight around his waist. He seems to be looking for a little more input from the ground, hence the reason he likes to jump a lot. The weight gives him a little more of that input and the knee immobilizers keep him from jumping up and down. These are some of the best steps he's taken! But he's not afraid to let Robin know when he's had enough for the day :o)



He's still really fighting the constraint therapy, so his OT has decided to back off a little with that. Instead, we're focusing more on bilateral use. So, rolling and throwing a ball, shaking maracas in both hands at once, clapping etc. His right hand seems to follow his left when he's not thinking about it and when we don't take away the left. He'll hold his bottle with both hands, but try to get him to just use the right and he flips out. So, the ultimate goal is to have him use his right hand as a "helper" to the left and he's doing pretty well with it so far. He's got great shoulder and upper arm strength on his right side, though, and he's amazing at upward facing dog! Sometimes I make him practice yoga with me :o)

In other good news, Dominic is DONE with Clonazepam! After 4 1/2 months of weaning him off, he is officially DONE with it. He is now down to just one seizure medication (Keppra) which he will be on at least until August, possibly longer. Aside from the Keppra, the only other medication Dominic is on is Bicitra for his kidney stones. It's hard to believe a year ago he was on 11 meds, including steroid injections!

Life is still crazy and stressful but it's encouraging to see Dominic continue to progress. He is a happy little guy and continues to bring us joy everyday!