365 Days and Counting

Dominic is 365 days old today. A lot of the past year has been measured in days. The number of days he was having seizures before he was first hospitalized (3), days it took for the ACTH to stop the spasms (7), total number of days he's spent in the hospital (30), and the number of days he's been seizure free (59). We feel incredibly lucky to have our little Dominic so happy and thriving after what he's been through over the past year. To be honest, 6 months ago I didn't see how we were going to make it to this day. In the thick of everything, it was hard to see a light at the end of the tunnel. But here we are! We have so many reasons to celebrate today. Dominic has been an incredible addition to our family and we are looking forward to another great year with him - hopefully with less drama, tears, stress, meds, and hospital stays. 

Dominic's birthday started off with a bang with an EEG at 7:45 this morning, followed by PT at 9:00. The EEG is to rule out ANY electrical activity in the remaining part of his brain. If all checks out, we'll start weaning the Clonazepam in about a week or so. That will leave him on ONE seizure med. Woo hoo! He's such a trouper and does everything with a smile on his sweet little face. His PT, Robin, put him on the treadmill again today and I caught a couple videos of it. He seems to like it! She is also going to set us up with a gait trainer at home (similar to the one below) so that Dominic can spend more time on his feet. Therapists hate the jumparoos and exesaucers because of their position in them.

What a champ at 7:45 am

He's realized he can pull them off his head now

Gait trainer, similar to the one Dominic will get

Mitchell, Dominic and I met Dad for a birthday lunch downtown and I baked him a little cake (which I was not prepared for when I frosted it, hence the Christmas sprinkles...woops) for tonight after we open his presents. We'll be having a bigger celebration this weekend when we celebrate a combined 1st birthday with his cousin Dylan. Should be a lot of fun! Cheers to another year!

The boys at lunch

The boys playing with one of Dominic's presents. I bought this before I knew he was getting an adaptive one.

Not sure at first about the cake

Yeah, it's good

Fun New Things

Dominic continues to experience new things each day! He's getting the hang of more "real food" and I've been making him things such as vegetable risotto, fruit & oatmeal and pasta in tomato sauce. He's learning to chew and is getting a better hang of self feeding. He LOVES the Gerber freeze-dried fruit. Now that he's almost one he'll hopefully start eating more real food and drinking fewer bottles.

Spaghetti...mmmmm

Juice please!

We took Dominic with us to dinner on Friday and for the first time he could sit in the high chair the whole time without falling over. He seemed so "normal" playing with my keys (and by this I mean throwing them on the floor repeatedly), eating bits and pieces of rice and trying to grab everything in sight. The littlest things are so fun to see.

Dominic crashing our sushi date night

Today he had PT and OT and for the first time got to ride the "bike". It's an adaptive trike made for kids with special needs, so they can strap in his feet and right hand. He rode it all over and loved it! His OT wants to start paperwork to get us one. There is a non-profit that makes them for families with kids with disabilities for FREE. How awesome is that!? In other news, his PT has been doing a lot of different stretches with his right hip as he seems to have some discomfort with it. They want to get an x-ray scheduled just to make sure there is no injury or something else going on. Other than that, he continues to progress everyday!

Therapy at home

On all fours!

Riding his trike at OT

Business As Usual

I don't have much to post this week, which is actually a good thing. That means life has settled down! We're still keeping busy with OT and PT but we now have more time to hang out and play. Dominic is making great progress in therapy and his right side continues to get stronger and stronger. He's been able to move his right arm and leg for awhile, but he's just starting to realize where they are in space. He's starting to purposefully move his arm and hand, which is so great to see. Last night Mike and I saw him clapping on his monitor; which he's never done before! We were so excited! Tonight in the bath he was trying to use both hands to pick up a toy. He's not really able to use it to pick something up, but the fact that he's trying is huge progress. He's acknowledging it's there instead of just letting it hang. Here's a cute little video from tonight.




After a positive progress report from Dr. Chugani and Dr. Sood, we decided it was okay to travel. So, thanks to my parents treat, I will be taking the boys to their beach house in Florida in November. It will be nice to be there with my folks to spend time relaxing, but we will miss Mike a lot!

Newest obsession...showers

Next Thursday will be a big day in the Dunlap house - Dominic turns ONE! Wow, what a wild year it's been. I can't believe how much has happened in less than a year. I was telling my mother-in-law the other day that as crazy as it sounds, I am grateful for everything that has happened with Dominic. Although I would have never asked for any of this, I have learned so much through this experience. I've learned a lot about myself, my husband, my family and my faith. While there is a lot of bad in this world, there is  also a lot of good. There are evil people but also amazingly loving and supportive people as well. We have been incredibly blessed by so many people; all without which we could not have survived this. It's through trials that we see ourselves and others more clearly. So no, none of this was easy. Would I have rather had a happy, healthy baby? Yes. Would I have rather slept through the night than be up all night with a seizing baby? Yes. Would I have rather played patty cake with Dominic than give him steroid injections? Yes. Would I have rather let him keep his whole brain than let a surgeon cut half of it out? Yes. Would I rather be snuggling and playing with my baby, than taking him to therapy four times a week? Yes. But life isn't always about us and what we want. Life's not fair. Sometimes you just have to roll with the punches and do the best you can. And while none of this has been ideal, Dominic is and has been an incredible blessing and taught us so much. It's been a wild ride and I wouldn't change it for anything :o)

Fun with Mom's new camera! Gotta love that half smile.

 

Eating his socks, his new favorite pastime

Sparkle

Today we had our follow-up appointments with Dr. Sood and Dr. Chugani. Both were thrilled with how well Dominic is doing. Dr. Sood said his incision looks great and so does the shunt. Supposedly the incision will look it's worst in about a month because of how the skin stretches as his head grows. But around 6-9 months post-surgery it should just be a thin line and the hair will start to grow back in that area. Dr. Sood revealed to me that in 18 years he had never had a patient come out of surgery with a sore on his neck like Dominic. He assumed it was from how he was clamped, but said he kept thinking about it and a few weeks after surgery and he realized that during the operation they put an electrode on his neck that is hooked up to the EEG monitor and that must be what it was from. DING, DING, DING! We have a winner, people! I don't know how many times I had to tell nurses, doctors, anaesthesiologist etc. that Dominic is allergic to the paste they use to stick the electrodes to his head. After our 48-hour EEG when the cap came off and revealed blisters covering his head, I knew I had to make sure that never happened again. I make sure to tell anyone who asks if he's allergic to anything that he is indeed allergic to that particular paste. I guess in pre-op they didn't pay much attention because he was having surgery not an EEG. So, in the end it was a huge burn turned blister, not a bruise, which is STILL not healed...

Other than that grand discovery, everything seemed great from Dr. Sood's perspective. We won't need to go back and see him for another year unless something happens that's cause for concern. Later in the day we met with Dr. Chugani and he thought Dominic looked great. Dominic wouldn't stop babbling and "talking" to him. When I asked him about how he thinks Dominic will do developmentally and he seemed very positive. He said to look at surgery day as his "birth" day. Everything before that doesn't really count because he has been so drugged and constantly seizing for the past 9 months. So everything he does now is through a new set of eyes and is all new to him; almost like starting over. So the fact that he is sitting, babbling, self-feeding and interactive is incredibly good news! He should continue to progress quickly and hopefully become mobile in the next few months. Because Dominic does have some use of his right hand (although still very weak) he thinks he will be a great candidate for Constraint-Induced Movement Therapy. In this particular therapy, they would restrain his strong arm and hand by casting it in hopes of getting him to only use his weak side. Here is a pic of a cutie I found who has been through this type of therapy. You'll notice her left arm is casted and has pink kinesio tape on her right. She also has an AFO on her right leg, which is what Dominic will be fitted for in the near future.

Tonight was started weaning the Vimpat. It will take about four weeks to fully wean him off that. During this time, Dr. Chugani would like him to get an EEG just to make sure there are no spikes. If the EEG comes back clean we'll start weaning him off the Clonazepam. I cannot wait to see what this child will be like on only ONE seizure med! The plan is to then do 24-hour EEG a year post-op and if everything looks good, to take him off Keppra. That would make him med free! I don't want to get too far ahead of myself, but it sounds like a good game plan to me :o)

After Dr. Chugani was examining Dominic, he looked up at me said "what I look for in a patient is a sparkle in their eyes. It's not just what he's doing or not doing physically or where he's at developmentally after surgery. But if he has that sparkle in his eyes, I know he's going to do great". Dominic really has "woken up" and has a beautiful sparkle in his eyes.

Tomorrow we resume our normal crazy routine - Mitchell is off to preschool; which he loves! Dominic has PT and OT and then his OT from Early On will be out Wednesday to get him registered for the year. PT again Thursday and then hopefully a relaxing Friday.

Mitchell on his first day of preschool!

Look Who's Talking

We had a great Labor Day weekend. I took the boys down to Naperville and was able to spend a lot of quality time with family. My sister recently moved to downtown Chicago and she was back for the weekend and my brother had some time between school and work to hang out.We also got together with the entire Jurgensen family and all of my extended family was finally able to meet Dominic for the first time. It was a blast!

The Jurgensen Fam

We're still working on self-feeding and he seems to be getting better. He loves yogurt melts but most of them usually end up stuck to his hands and face. We also tried the sippy cup for the first time tonight. He doesn't quite get the hang of it, but he understands the concept at least.

That's a yogurt melt stuck to his chin

Not a huge fan of the teething biscuits

Trying out the sippy cup

Since life is starting to become more "normal" I decided to try to get back to some of the normal things I did before all this went down. I started making Dominic's baby food again which has actually been great. I have a really hard time feeding him jarred pureed meat, it just smells awful and looks gross. Since he can't quite feed himself table food yet, he still gets the mushy stuff. I've got a great baby food cookbook and I've been whipping up some goof stuff. I'm not going to lie, the chicken, sweet potatoes and apples smell and taste just like Thanksgiving dinner! I also attempted to start cloth diapers again. Not sure if this is a sign or not, but the first day back at them, Dominic had the biggest blowout I've ever seen. I almost threw away the diaper (and it's a $30 diaper), but instead I cleaned up all the poop that was EVERYWHERE and decided to shelve those for a bit longer. One thing at at time I guess...

Using his right hand to play

Sporting some new kicks

I was getting Dominic ready for the bath tonight and I heard babbling from the bedroom. Apparently Dominic had a lot on his mind. I kept trying to get him to do it on video, but he'd only do it when I wasn't watching him. Hence the reason I'm filming from the corner :o) It's just so fun to see him doing new things almost every day.

11 Months old

Dominic turned 11 months old on Monday, which is just crazy to me. I can't believe he's almost a year old! What a wild year it's been. Part of me has a hard time when people ask me how old he is and can't believe he's almost a year. He looks more like a huge 5 month old because he's delayed in most areas. But if only they knew what he's been through! I am so proud of him and regardless of how delayed he is, he still continues to impress me each day.

He had a great week at OT and PT. He is using his right hand to hold toys and to steady himself on the swing they have. Yesterday he did a little treadmill training and didn't scream the entire time, an improvement since last time. His PT has talked about getting him fitted for an AFO (Ankle Foot Orthosis) within the next month. He won't be walking anytime soon, but she's more concerned with making sure his right foot alignment is correct before he does start to stand/walk.

We've been a little crabby...

...and here's why. Four new teeth at once!

We saw the opthamologist this morning and at this point he still doesn't need glasses, so that's great. She confirmed he has absolutely no peripheral vision in his right eye, but we already knew that. Everything else looked good and she was impressed with how alert and interactive he was compared to the last few times she saw him.

We are traveling away from home for the first time since surgery. The boys and I are packing up and heading to Naperville for the long weekend. We have a family reunion with the entire Jurgensen clan on Sunday and I am anxious for all of my extended family to meet Dominic. We might try to hit up the pool one last time before it closes for the season as well.

Next week is a big week for our little Mitchell - he starts preschool! I can't believe I'm sending my first one off to school already. I think it will be great for him and he's really excited. It will give me time to spend with Dominic and attend his various appointments each week without worrying about Mitchell.

I have already mentioned before how Mike and I have witnessed God's hand in all of this and despite the difficulties, there have also been many blessings. But this week I got an email from a mother of a 15 month-old patient of Dr. Chugani. She has Infantile Spasms and Dr. Chugani wants her to have a hemispherecotmy. She is very hesitant and wanted to talk with a parent who's child had been through the surgery. I could not email her back fast enough. I am so happy that I can use our situation to help others dealing with the same thing. I'm not sure how, but I do think this entire experience is something I can use in the future to help others. Maybe I'll be on the board one day of the Epilepsy Foundation, or run a support group or maybe I'll write a book. Who knows, I guess we'll just have to wait and see what God has planned :o)

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).