Something New Each Day

Dominic continues to surprise us. He seems to pick up on something new each day. He is much more active, alert and interactive than he was before surgery. He is making funny faces, jabbering, and doing new things like learning to self-feed. He's figuring out how to chew pieces of food rather than just eat pureed baby food.

He missed his baths!

We went as a family to the Kroc Center (our new gym) and swam yesterday. Dominic loves the water and loves to splash and kick. They have all sorts of slides and sprayers and stuff at the pool and he loved to play with the water squirters and jets. He just seems to be taking in everything around him and is always discovering something new. It's just amazing how he as "woken" up in the past couple weeks.

Sitting up

Holding things in his right hand!

I finally feel like the mom I always wanted to be. I'm enjoying my kids more than ever before. My stress level has gone way down and I find myself looking forward to each day. I'm trying to think of fun things to do and cool places to go instead of just thinking of ways to get through the day. I really didn't realize how bad I had been feeling for so long. I just can't stop praising God for the pure joy He has given me latley. I guess going through incredibly difficult and stressful times really makes you appreciate and find so much joy in the good times.

At the park

I have a couple fun videos of the D-Man making some funny faces and working on self-feeding (definitly still a work-in-progress).

Post Surgery: Week 3

And that means three weeks with NO SEIZURES! Dominic is doing great. Besides a few issues with him vomiting and little to no appetite, he is doing extremely well. I took him into the pediatrician on Monday to get his stitches removed from his shunt incisions. The doctor thought he might be getting sick from being on Tylenol w/ Codeine and Motrin for three weeks. Both can irritate the stomach, especially being on it for so long. So, he said to quit those and just give regular Tylenol as needed. Lucky Dominic is also getting four top teeth in the midst of this. Three have popped through and we're waiting on the last one. The pain meds were pretty handy at helping with the teething, but apparently make him sick. He has not vomited since Monday night and he's finally starting to get his appetite back. I was getting a little worried as he threw up most of what he ate and drank and didn't want anything to do with baby food. I started giving him Pedialyte just to make sure he wasn't getting dehydrated. The last thing I want to do is see the inside of a hospital anytime soon. But, he seems to be perking up, so we're relieved about that.

Smiling...

"Singing"...

Laughing!

Dominic is just such an amazing kid. He has such a great, laid back personality and we are enjoying him so much. He has once again found his voice and he never stops "talking". The other night he was wide awake from 3:00-4:00 am just babbling and blowing bubbles in his crib. No crying, just making noise. He cracks me up. He's getting more active as well, moving his right side a lot. His new favorite thing is sucking on his big toe! His OT and PT are pushing him pretty hard and he's not always thrilled with what they make him do, but he pushes through like a champ. Our mantra latley has been "what doesn't kill you only makes you stronger" - this has been true for both Dominic and Mike & me. This entire experience has really shown us all that we're a lot stronger than we thought.

I seriously can't say enough just how happy I am right now. I haven't felt this good in a long time. Dominic is doing great, Mitchell is doing great and Mike and I are doing great. It's amazing how much more enjoyable life is when you're not bogged down with stress and anxiety! We enjoy our time together more and just seem to have more fun without all those crazy seizures. Mike and I are even trying to get back on track with exercising. Two weeks of lethargy really put us in a funk. We are enjoying what is left of the summer and looking forward to fall (and football season...Go Blue!). My mom and I have even talked about taking the boys to their place in Florida for a few days in November. Lord knows I could use a vacation. Mike would love to join us, but with no vacation days left, someone's gotta bring home the bacon!

Mitchell is back t his old, happy self

Experimenting with different head gear

Again, a big thank you to everyone who has prayed for us, cooked for us, babysat for us, cleaned for us and overall supported us through the past 9 months. It's amazing the blessings that have come from all of this and Mike and I just sit back in awe at how blessed and loved we are. God certainly does bring incredible good out of any situation.

Normal

I've had people ask why I haven't posted since Tuesday and the reason is because there hasn't been much to tell. It's been great having Mike home the rest of this week to get settled back at home. We've done laundry and unpacked and spent time as a family. Dominic is doing exceptionally well. He's still a little sore and his incision is tender, but he's doing awesome. Dr. Arndt was thrilled with how good he looks and his physical and occupational therapists said he looks amazing and will make some major gains in the next few months. He has been moving his right arm a lot, I would say almost more than he was prior to surgery. His right leg is coming back slower, but he'll get there. He is sleeping well (through the night last night for seriously the first time ever!) and eating well. He's playing and rolling over. He's getting his trunk strength back and sitting on his own. I wasn't sure what to expect when we got home, but I thought it would be a really long recovery. I've heard that kids bounce back fast and Dominic is a prime example of that.

Sitting

Rolling

Mitchell is also doing much better now that we're home. He's getting back on track with potty training and he's back to his old self. He has really enjoyed having us both home. We joined a new gym and they have an indoor water slide and splash pad, so we all went swimming yesterday. Mitchell had a blast and Dominic was happy to sit and observe. Today I took Mitchell to the zoo and enjoyed a little Mom and Mitchell time. I am so relieved he's doing better. I was afraid it was going to take a long time to adjust again, but everything's great!

Mike and Mitchell stretching before a run

At the zoo with mom!

Our life seems to be somewhat "normal" for the first time in a LONG time. It's amazing to sleep through the night instead of waking up to every little noise and constantly checking the video monitor worrying that Dominic is having a seizure. Life will start to get crazy again with Dominic having therapy four times a week and Mitchell starting school. But I haven't felt this good in a long time. It's just amazing to see what this surgery has done for Dominic and what an incredible gift it was. I wake up in the mornings and am just so full of joy and I praise God for our little miracle. I can't say I've felt that way much over the past 8 months. I read the Bible and I firmly believe it's God's written word. So I always believed in miracles, but had never witnessed one. I can say without a doubt that I have now witnessed a miracle. When Dominic was diagnosed at two months old with Infantile Spasms, his prognosis was very poor. Over the past 8 months Dominic has continued to beat the odds and is doing better than anyone expected, which is nothing short of a miracle. I have no doubt he will continue to surprise us all. Although I would have never asked for any of this, nor wish it upon anyone else, through this experience, God as revealed himself more and more. He has shown us just how much we can endure when we rely on Him. It hasn't always been easy and there have been times when we have really questioned Him. But we have have continually seen His hand in everything and it has been a true blessing to have experienced first hand God's incredible grace and love.

Homecoming

It has never felt so good to be home! We got home around 1:30 this afternoon after spending the night at my in-laws. We really didn't feel like making the three hour trek from Detroit to Grand Rapids last night. Plus, we wanted to be close by in case anything crazy happened. It was a nice night. My mother-in-law made a wonderful home cooked HEALTHY dinner. Hospital food doesn't qualify as healthy, even if it has vegetables in it. It was also really nice to visit with them and Mary, my sister-in-law. Dominic and I woke up at 9:30 this morning, which was amazing for both of us. I don't think I've slept till 9:30 since before Mitchell was born. I just felt great to be in a bed again.

We pulled into the driveway today and were greeted by streamers, balloons and a sign welcoming us home; thanks to our awesome neighbors the Pflugs! After we walked in the door, there were flowers and a bottle of wine (yes!) on the table with a note from our dear friend Sally who had stocked our refrigerator, made us dinner, cleaned our house top to bottom, and did laundry! Our lawn was freshly mowed thanks to one of Mike's college buddies, Rodney. I was very overwhelmed when I got home. I couldn't believe how incredibly blessed we have been. We have so many friends and family who have sacrificed their time to help make our lives easier. I noticed an immediate difference in Dominic and Mitchell when we got home. Dominic is rolling around, playing, smiling and laughing. Mitchell just seems so happy to be back in his own house.  His attitude has improved, but I must say he's regressed a bit in the potty training arena. It looks like we're starting from square one and we don't have much time. He starts preschool in a few weeks!

We buzzed his hair to blend in the bald streak

"Buzz" Lightyear

We jump right back into our busy normal life tomorrow. We have an appointment with Dr. Arndt who is anxious to see Dominic post-surgery. We also need to discuss with him what neurosurgeon in Grand Rapids should handle any issues with Dominic's shunt in the future. Thursday we start up OT and PT again too. Mike will probably head back to the office Friday just to get some stuff done and then he'll be back to work full-time on Monday. This has been a crazy few weeks but we just can't believe it's over. It's been such a blur. I remember all the anxiety I felt leading up to the surgery and now it's over. Dominic has been seizure free for exactly two weeks and we could not be happier. God has blessed us immensely through all of this. He's given us incredible doctors, nurses and therapists that have gone above and beyond caring for Dominic. He has also blessed us with great friends and family, without which we could not have survived this. To Him be all the glory!

Halle-freakin'-lujah!!!

We are finally getting the heck outta here! Neurosurgery came by this morning and examined Dominic, who is doing great today. No fevers, no more illness and only a little irritability from the shunt (which is normal). They said they'd discuss and see if he could go home today or tomorrow. The PA came back 1/2 hour later and said "how do you feel about going home?" I was sort of taken off guard but was naturally thrilled. So, they are busy getting all his discharge papers ready. We're planning on spending the night at Mike's parents' house, just to be close enough in case something happens tonight. But then we will FINALLY head home tomorrow! I've never been so excited to go home. He'll still be on three seizure meds (Keppra, Vimpat and Klonopin) but once we see Dr. Chugani in 6-8 weeks for follow-up, he'll start weaning the Vimpat, then shortly after that, the Klonopin. Then he should only be on Keppra for a year or so! He still has that nasty sore on the back of his neck, but the Wound Care nurse says it probably won't be healed over for about a month. So we still need to clean it and cover it for awhile. He still has his stitches in from the shunt operation, but we can just go somewhere in Grand Rapids to have them removed. We'll also need to find a pediatric neurosurgeon in Grand Rapids who can closely follow Dominic now that he has a shunt. After talking to the PA yesterday, I'm realizing this is going to be a lifelong thing. Most kids need at least a couple shunt revisions in their life. We just hope he won't need one for at least several years.

Getting ready to go home!!

We are so anxious to get home, sleep in our own beds and spend time as a family. We're all in need of some rest and quality time together. Dr. Chugani came down here a few minutes ago just to see Dominic before he left and is confident that Dominic will thrive. He said we should expect amazing things from him over the next few months. Personally, I already think he's done some pretty amazing things, but I can't wait to see what his future holds!

Just One More Thing....

I usually sit down to write a post at night because the days can be so hectic. Well, I should have done it earlier yesterday when things were pretty calm because last night was a little nuts. Dominic started having diarrhea around 7:00 pm and had it 4 times before 9:00 pm. He also spiked a fever again and shortly after getting his 9:00 meds, threw up all over himself and his bed. Neurosurgery didn't really know what to make of it. It could have something to do with the shunt or it could be some other kind of infection starting. So, after we finally got him all cleaned up he had to have blood drawn. Blood tests revealed no infection but based on a certain protein they test, there is still quite a bit of pressure. This could just be because he had the shunt put in two days ago and there is still some swelling. When Dr. Sood came by this morning he said we just have to wait. It doesn't sound like anything to do with the shunt but is probably just a stomach bug. You spend enough time here, you're likely to catch something. But, he won't send us home if he's having signs of sickness. So, more waiting!

Other than that, Dominic had a great day yesterday. My in-laws visited and it was such a nice day outside I actually got out. I walked a few blocks to CVS and stocked up on stuff I ran out of. Those little bottles of shampoo and conditioner don't last very long! It felt good to just move and be outside. I didn't realize how much my body craves Vitamin D. Since it was a Saturday, the hospital was pretty empty. So Mike and I also took Dominic on a walk in the wagon and we just sat out in the garden for awhile. When we came back up, we were all excited to order Thai food for dinner. It took 10 days of eating cafeteria food before the nursing staff told us there was a take-out menu book! Unfortunately, when we called, they told us they don't deliver after 4pm, so it was back to the cafeteria :o( Agghh, I can't wait to get home and eat real food again.

Hanging out in the garden

This morning Mike took off to go pick up Mitchell and take him back to his parents' house and I had a couple special visitors! My friend Katie (who was such a huge help watching Mitchell over these past months) and her husband Ryan came to visit all the way from Chicago, where they recently moved from GR. I couldn't believe they made the trek all the way here! After that came Uncle Bob and cousins Jonah and Leah. And then my friend Jenna came down again for lunch. My in-laws are on their way for a quick visit too. Visitors are great, especially when Mike isn't here to keep me company.

The Napps are here!

"Auntie" Jenna came back for another visit!

It looks like we won't be getting out of here tomorrow. Maybe not even Tuesday. It all sort of depends on if Dominic is feeling better and fever-free. We just keep praying we can go home soon, which I think would be so much better for all of us. But at the same time, I don't want to leave and have something happen and not know what to do 3 hours away. So, I guess this is the best thing right now.

Shunt The Front Door

Today was sort of a whirlwind. Yesterday afternoon we were in a state of waiting and we were told we would wait a couple days to determine if he needed a shunt. We had another rough night, Dominic didn't sleep much, and despite continued doses of "Baby Vicadin", he was still very uncomfortable. When Dr. Sood and his team did rounds this morning at 10 am, they informed me that they needed to put in a shunt today. This decision was based on his CT scan, blood work, fever, demeanor and the puffy, fluid-filled areas on the top of his head. I first had to process this and then of course I went straight to the Internet to find out exactly what they were going to do. To be honest, I didn't realize it was another surgery at first. He always made it sound like it wasn't that big of a deal. But they actually put him back under anesthesia and have to open him up again. Fortunately, he already has a few holes in his head from the drains, so they were able to go through there. They placed one end of the small tube in the ventricle where extra fluid is causing problems. There is a valve in the tube that controls the amount of fluid that runs through it and this controls the pressure in his head. It also makes sure that the fluid flows in only one direction, away from the brain. Then they tunnel the tube under the skin from behind his ear to his abdomen where the fluid will be reabsorbed by his body. They cut a small hole in his abdomen to stitch the tube into place internally. It's pretty crazy; I can actually feel the tube when I gently press on his chest. For those of you who are visual learners like me, here's a pic of how it works:

 Dominic did great. The surgery only took an hour or so plus recovery - nothing compared to his hemispherecotmy. My mother-in-law and sister-in-law kept Mike and I company in the surgical waiting room and it was great to just sit and chat. The days can be pretty lonely when the only people you have to talk to are the nurses. By the time they had wheeled him back to our room he was awake, alert and looking around. He spiked another fever, which is very common post-op. He was also still crabby but the pain meds have helped that. Now we just watch for the next few days to make sure everything is working, no fevers and his demeanor improves. He will be pretty sore for a couple days since they push the tubing through all the tissue from his head to his belly. Then we will finally get to go home! That is of course if the shunt doesn't get infected (knock on wood).

In pre-op

We're not sure if this is something he'll need forever or not. Some kids eventually start processing and reabsorbing cerebrospinal fluid on their own and they can remove the shunt. Others have it forever. There is a risk of infection - while it's only 2% in hemispherecotmy patients, we have learned from past experience that Dominic usually falls in that small percentage. From the kidney stones to the brain stem swelling, to low sodium levels and vomiting, to needing a shunt. He always falls in that small percentage of rare side effects. But we are really hoping and praying that it does not get infected. If it does, they have to remove the shunt, drain the infection, treat it and put the shunt back in. There is also a chance that in the future the shunt could clog. In that case they'd have to do something similar to correct it.

Back from surgery, feeling good!

A little snooze

Here is a video of Dominic using his right arm 10 days post-hemispherecotmy. Yeah!!!

Out of surgey, shunt is in, on to recovery!

Dominic has been such a champ through all this. They really didn't think anything was wrong until they did the CT scan and blood work. Besides the fever, he wasn't too bad. Most kids are screaming and crying uncontrollably if fluid is building up and putting pressure on the brain. Not Dominic, he just whimpers and whines. He's one tough little guy. Today in pre-op I was rocking him and humming "Fairest Lord Jesus" (which my mom always sang to us before bed) and just looking in his eyes. We always call him our "Little Old Soul" because when you look in his eyes they seem to go on forever. He's been through a lot more than most people endure in a lifetime and yet he just returns my look with a smile. This little guy has been teaching me a lot about patience, endurance, strength and trust. I never thought I could learn so much from a 10 month old baby, but I have! God sure works in mysterious ways :o)

My favorite boys :o)