Moving Forward

We had a busy week! Dominic finally got his tubes on Monday after getting rescheduled 3 times. The anesthesiologist didn't feel comfortable doing the procedure at an outpatient office with his health history. So, we had to have it at the children's hospital. He seems to be doing better and is much happier now that he can hear. The kid never shuts up! He's either squawking like a little bird or babbling. He seems to really love being able to hear himself make noise. The procedure was really fast and we had no problems. I seriously only had time to go to the bathroom before they came out and got me to tell me he was done. Piece of cake compared to his 10 hour brain surgery!

Time for some tubes!

Dominic also got casted for his AFO (ankle foot orthosis) on Wednesday. That will take a couple weeks to come in but should be helpful once he can start wearing it. He is bearing more weight and can stand for awhile with me just holding his hands. But you can see that his right ankle is weaker and tends to lean/slump to one side. So, should help keep his right leg and ankle in correct alignment.

Dominic's new footwear he'll be sporting

We saw the Urologist this week and he got another ultrasound of his kidneys. Stones are still there, about the same size, so he'll have to continue taking Bicitra (which is disgusting and he hates it). But they haven't gotten bigger, so that's good. He said at this point they are small enough that he would pass them. That should be a fun experience should it happen!

He had a great week at PT and OT as well. He did the best he's ever done on the treadmill, really trying to take steps. He even for the first time, tried taking steps on his own while I was holding his hands. His PT said that means the treadmill is doing it's job - teaching him how to walk. He also spends time at home in his gait trainer, but he's not a huge fan of it. It seems to bore him :o) He's not close to crawling, but definitely gets where and what he wants, as you can see in the video below.

His new favorite thing to do

I can stand!

Standing on my own (for a few seconds) at my play table!

The past few weeks we have had quite a few friends and family that have gone through some really tough times. It breaks my heart and I have no idea what they are going through. But I do feel that the past year with Dominic has really taught me more compassion and empathy. I do know what it's like to spend countless hours in the hospital. I do know what it's like to wait in agony to see if my child will survive major brain surgery. I do know what it's like to be up all night with a seizing baby, afraid to sleep because he might aspirate on his own vomit. I do know what it's like to have no hope. But I also know that God is bigger than it all. I've experienced the grace of God in so many ways. And I believe in miracles, because I have my own living, breathing miracle. God allows some really bad things happen to some really great, amazing, God-fearing people. I don't understand it and it doesn't seem fair. But I know that God will never forsake us and He always gives us what we need for each day if we trust Him and give it all up to Him. I am grateful that God used Dominic to break me. I've always considered myself such a strong person, but 9 months ago I was truly broken. Only through the grace of God could I pick up the pieces and be put back together. I now feel like I can empathize with people who are suffering more than I ever could have before; and that is a true gift. I only hope and pray that I am able to use our experience with Dominic to help others who are struggling.

Tube Time....Finally

Tomorrow Dominic will FINALLY get his tubes! After being rescheduled several times, I finally had to open a can of whoop-a** on the ENT office. They kept rescheduling his surgery and last week tried to push it to December 19th. Finally I said no way, no how. The poor kid has been through enough in the past year and if Children's Hospital of MI can schedule major brain surgery (which is only performed there 10 times a year) in less than two weeks, they can schedule a 10-minute tube procedure in less than 2 weeks here at DeVos Children's. The nurse called me back and said 'how about this Monday?' So, tomorrow at 11:45 hopefully Dominic will be able to hear after four months of feeling like he's underwater. And hopefully no more ear infections.

Aside from ear infections, the only issue we're dealing with these days is teething. Hallelujah! Dominic is doing great. He continues to amaze us and he is such a joy. He is the happiest thing we've ever seen. My mom said he's like "a ray of sunshine". The kid just seems so happy to be alive.

Mike and I got away this weekend to celebrate my big 3-0. My folks came up to watch the boys and Mike and I got to enjoy a nice steak dinner, some wine tasting and a night at the Amway hotel. It was fabulous! The best part about it was that we no longer worry the entire time about Dominic. We actually got to enjoy a night together, laughing and reminiscing without constantly checking our phones or checking in with my mom. It was the best way to spend my birthday, especially considering this time last year we were just getting released from the hospital. It has been such a gift the past few months to be free of the constant worry and anxiety we've been slave to the past year. Plus my parents had a great time playing with their two little guys without the worry and stress as well!

The Amway all decorated for Christmas!

At Reserve, the wine bar I've wanted to go to for months!

Mike playing with my new birthday present

The D-man with Grammy

Life has been pretty clam lately. We've had a fair share of illness - I've had a cold and laryngitis for 13 days! Dominic has had colds and ear infections off and on, and Mitchell had the stomach flu. But other than that, we keep up our routine of school, work, OT, PT, and doctor appointments. We saw the neurologist last week and they are thrilled with how well Dominic is doing. We just started month two of his Clonazepam wean. In 3 months Dominic will be on ONE seizure med!! I never thought I'd see the day! We have an appointment this week for Dominic to get casted and fitted for his AFO (ankle foot orthotic). Now that he is standing (assisted), his PT wants him to get an AFO to make sure his right leg/foot are in correct alignment. He continues with treadmill training at PT and uses his gait trainer at home. For the first time ever, the other day Dominic pushed all the way up on his tummy so that his arms were straight. This is a big step for him since his right arm is so weak. It's proving he is getting stronger on his right side and is able to use his right arm to support himself. Crawling will be a challenge for him because of how much he needs to use his right arm, side and leg; but I don't doubt he'll do it. He'll figure out a way. It's so obvious now how much he wants to move. He can turn himself in a complete circle but gets pretty frustrated ending up in the same place that he started. But he'll get there, I know it!