Cold, Ear Infections and Tubes?

We were back in the pediatrician's office last Friday with a second ear infection in 3 weeks. Last week Dominic was up most of the night for three nights in a row. The doctor thinks that he had an ear infection, the infection cleared from the first round of antibiotics but it didn't drain. So, it caused another ear infection and a sinus infection. He was put on another antibiotic last Friday and is doing much better. (Apart from the effect the med has on his poop! I have done 2-3 loads of laundry per day because he blows out of everything. Including Thursday during his CT scan and again at the neurosurgeon's office :o) Because of all his other issues, his doc said that if he ends up back in the office with another ear infection in the next few weeks, they would put in tubes. I'm always freaking out because the nights he's up all night I constantly worry if it's his shunt, his kidney stones or something related to his surgery. So, because of his other issues, putting tubes in would eliminate ear infections as the problem.

We had another great week at OT and PT. He's bearing more weight on his legs and is using his right arm more each week. He LOVES the swing. Here is a cute video of him and his OT, Sarah, on the swing.




Thursday was crazy. We started with  PT at 7:45am, followed by a CT scan, shunt survey and an appointment with the neurosurgeon. Everything looks good. Shunt is in good shape and the hematoma he had post-hemispherectomy is gone. No need to see Dr. Scarli for another year, unless anything happens with the shunt.

We were all finally home together this weekend. Mike and I had dinner with some friends while the boys enjoyed a Halloween party at The Nanny's on Friday night. Yeah for date night! We went to the pumpkin patch on Saturday and got pumpkins, did the corn maze and picked apples. We also did some needed cleaning/organizing around the house and spent time outside enjoying the great weather. We've been so busy this month; we really enjoyed having this weekend at home.

At the farm waiting for the hayride

Lost in the corn maze!

Picking out pumpkins

Picking apples

 I was talking to my mom the other day and was just expressing to her how happy I've felt lately. I never thought I would enjoy some of the most mundane things. But it's just been awesome to feel 'normal' again. She told me something I hadn't thought about before. She told me to ask God to never let me forget what those 10 months felt like. To never forget the hurt, heartache, stress, anxiety and sadness that I felt. And to never, ever forget that He was the only one that could have gotten me through it. There were days I wasn't sure I was going to make it, days I wanted to quit life and days I needed Him for every breath. Now that life has calmed down, I don't need God the way I did. But I should. He isn't just there for the hard times; and I never want to forget that. At this point in my life I may not need Him to get through each day, but I will always remember the days I did. And I will praise Him each day for the grace and blessings He's poured out on us.

Party Time

We had a great weekend in Naperville. My parents hosted an open house for friends/family in the Naperville area to come see/meet Dominic. We had a great turnout and it meant SO much to us to see so many of the people that have been such a great support to us over the past year. We were also able to celebrate Dominic's first birthday with my family, which was great. Below are a few pics from the weekend.

My wonderful friend Liz came out to meet Dominic!

Great friends!

Mitchell might have just eaten 7 brownies for dinner. I'm such a good mom!

Happy Birthday, D-man!

This week, was of course, another busy week. We met with the neurosurgeon here in town who will follow Dominic and be available should he have any issues with his shunt. He's requiring a CT scan and a scan that will show his entire shunt from head to abdomen. So that will be scheduled soon. Wednesday, Dominic had an x-ray of his hips which showed that everything looks just fine. So, we're assuming the discomfort he's been having during PT is just from lack of use of his right leg. He probably has a little tightness in there. So, good news that there is no dislocation or anything.We filled out the paperwork this week for his adaptive trike, so hopefully we'll be getting that soon. Today we had playgroup at the school through the Early on Program and then PT. His PT is writing up a scrip to get him an AFO (ankle foot orthotic) as soon as possible. Now that he his spending more time on the treadmill and on his feet at home in the gait trainer, they want  to make sure his right foot is in the correct alignment. More equipment, yeah!

Dominic has had a cold for several weeks now and we were in the pediatrician's office again this morning with another double ear infection. That's two in three weeks. I probably seem like I'm overreacting, but he's been up the last 3 nights for several hours crying and screaming - totally inconsolable. It's stressful because I don't know if it's his shunt malfunctioning, his kidney stones or something as simple as teething or an ear infection. So, the doctor said if he is still having ear trouble in the next few weeks, he's going to put tubes in. At least that way we can eliminate ear infections as a cause the next time he's up screaming all night. Despite the continued cold and ear infections, Dominic continues to do well. He just seems more active and alive every day. He and Mitchell have really had a lot of fun together these days. Mitchell seems to really love his brother now that all the attention isn't on Dominic. He loves to hug and kiss his brother and he especially loves to read to him!

Reading Curious George to his little brother

Working on standing

Mitchell showing Dominic how to play with his trains

I am headed off on my own this weekend! A friend of mine moved up to Traverse City in June and I am going to visit her. We have some fun girl stuff planned this weekend, which will be great. I am so looking forward to it and I know Mike is psyched for an entire weekend on his own with the boys...ha! It will be good for him, lots of male bonding :o)

Two Months Post-Surgery

And doing amazingly well! I can't believe it's only been two months since his surgery. Dominic is using his right side more than he ever has before. His PT and OT are going to be doing more constraint therapy as Dominic has been showing more strength and control in his right arm/hand. Robin, his PT, wants to focus a lot on treadmill training as he has shown more interest in standing and "walking". We got our gait trainer today and he seems to like it so far. This is normally used to help kiddos as they begin to walk, but Robin wants him to use it at home mostly to get used to being on his feet. He's so funny, he's been trying to "step" and make it move. But really, it looks like he's just dancing. It's so cute :o)

We had a great weekend with the Dunlap family to celebrate Dominic and Dylan's first birthday's. It's been a wild year and we definitely had reasons to celebrate. Below are a few fun pics from the circus party. This weekend we are heading to Naperville to celebrate his birthday with the Jurgensen's.

Dominic is pretty much over baby food and rarely lets me spoon feed him. He loves to feed himself. His newest interests are cheese, scrambled eggs and peas. Anything he can pick up himself and shove in his mouth he likes. He loves rice and risotto as well as this potato, corn and chicken dinner I make for him.

scrambled eggs...yum

I had been trying to get a hold of Dr. Arndt since Dominic's EEG last week. He's a difficult man to get a hold of and he must have been very surprised when I ran into him in the elevator on Tuesday! He was heading to the neurology clinic and I was late for PT (as usual). We chatted for a bit and he told me that Dominic's EEG looked TOTALLY NORMAL!!!! Not just normal for a child with half a brain, but normal! This means that the remaining hemisphere is healthy and functioning normally. This is a miracle! We decided that while this is great news, we don't want to take any chances. So, Dominic will be totally weaned off Vimpat on Sunday and then we'll wait three weeks before starting the Clonazepam wean.Clonazepam is a very strong medication and can have really bad withdrawal symptoms (as we saw when we tried to take him off it prior to surgery). So, we're going to take it very slow. I don't care though, I am just thrilled that everything looks good, he's seizure free, and on his way to becoming med free. This is the best that Dominic has been doing since he was 2 months old!!!

Dominic continues to progress every day. He's making more vocal sounds, moving more and exploring more of the world around him. Now when I hold him he is constantly bouncing, kicking, reaching and pulling. Just a couple months ago he would just lay limp in my arms. It's amazing how much more alive he is! He loves bath time (as you can see below!)



There are very few people in this world that I would say I am "in awe of". There are a lot of people I respect and look up to and admire. But very few am I in awe of. Dominic is one of those few people. Every morning when I go in to get him and he greets me with his signature half smile; I am in awe. Every time he goes to therapy and he makes progress; I am in awe. Every time he looks at me and I think about what he has endured the last 10 months, I am in awe. Every single day I am in awe of him. To think that he had half his brain removed two months ago and is doing as well as he is just astounds me. It's amazing how much your child can teach you. Especially one that's only been alive for a year. But in that year, Dominic has overcome so much and his strength, determination, spirit and will power make me want to be a better mother, wife, sister and person. God truly works in mysterious ways and uses the most unlikely circumstances, and people, to reveal Himself more fully.