Chicago

Last week was our trip to Chicago to visit the Shriner's Hospital. We went on a recommendation from my father in law who is a Shriner here in Michigan. He had been telling us what wonderful things the Hospital did for children with disabilities. We finally faxed the referral in September and our appointment was set for Friday October 10th. We would be seeing an Orthopedic Surgeon along with a team of therapists which included an OT and a PT.

Since our appointment was at 8:30am on Friday, we left the day before to settle in and what not. We were fortunate enough to be referred to The Ronald McDonald house - which was absolutely wonderful. We had our own private room and then the common areas were shared with other families staying there. It was pretty quiet this time of year, but while we were there, so many volunteers from different organizations came in to cook and clean. We had a few great meals while we were there. The house doesn't charge a fee to stay there, they work primarily off of donations, so we donated money for our stay when we left. Alex received a nice welcome bag of gifts and both he and Evan got to pick a new toy from the toy chest before we left. We cannot wait to go back. It also makes us want to volunteer more!! Such an awesome organization.

 

We thought the date was pretty cool



Outside of the house! Just gorgeous!

After we settled in on Thursday, we headed out to explore the City of Chicago. Eric and I had visited back in 2009, but it was nice to be back to show the boys. We took them to Navy Pier the first night. It was a gorgeous evening to be down by the water. We ate at the food court inside before going to the Children's Museum upstairs - which was free that evening. The boys had a ball! Evan loved digging for dinosaur bones and Alex loved dancing with the group of kids there. Before we left, the boys rode the carousel on the roof by the big Ferris Wheel at Pier Park.



Love this one of my little firemen!

Friday morning was the appointment. We first met with the Nurse, then the Resident Doctor and his assistant, then the Orthopedic Surgeon and the PT came in for the initial evaluation. We got a lot of great suggestions from the PT for Alex and she told us that she thinks he has a lot of potential. He moves well and has a lot of strength but it may take him awhile to do certain things. That is what we learned with most things when it comes to Alex. We think he will accomplish a lot, it is just going to take a lot of therapy, patience and time. It was a very positive appointment. Dr. Smith doesn't think Alex will need any kind of surgery in his legs including Selective Dorsal Rhizotomy (SDR) Surgery.

You can read more about that here: http://en.wikipedia.org/wiki/Rhizotomy

His hips will need to be monitored for hip dysplasia which we are already doing with annual x-rays and he has been "re-diagnosed" with Mixed Cerebral Palsy instead of just Spastic Cerebral Palsy.

* MIXED CEREBRAL PALSY
A child’s impairments can fall into both categories, spastic and non-spastic, referred to as mixed cerebral palsy. The most common form of mixed cerebral palsy involves some limbs affected by spasticity and others by athetosis.

 What this means is that Alex has a form of Spastic Quad CP (muscle tightening in all four limbs) as well as Athetosis (a condition marked by slow, writhing, involuntary muscle movements) also in all four limbs.

This makes a lot of sense to us now. Most people with Spastic CP have muscles that are very tight and very impaired. Alex does not. His muscles are not tight all of the time. He does relax a lot which is where the Athetosis comes in.

So we will return in a year for a follow up appointment with X-Rays and MRI copies to visit Dr. Smith again as well as see a Neurologist. We are very glad that we made the trip and got the second opinion. It helped us understand Alex more - which can never hurt.

























After the appointment, we were blessed to receive free tickets to The Shedd Aquarium complements of The Ronald McDonald house. In addition, we purchased tickets to the "4-D Experience" which was a 15 minute feature of Ice Age Dawn of the Dinosaurs. I cannot tell you how much Evan loves that movie right now, so I couldn't wait to surprise him. Surprisingly, I think his brother actually liked it more than he did. I have never done a 4-D movie before, so I didn't know what to expect. It was pretty cool. So we got the 3-D glasses and then there were physical effects that went along with the movie. Like, they sprayed snow and bubbles and our seats vibrated and there was a loud noise behind us. Alex laughed so hard that I was actually distracted by him! It was hilarious, but boy oh boy he was NOT happy when the movie was over and we had to leave!! I felt bad. Eric and I had been to the Aquarium on our last visit to Chicago, but it was nice to take the boys and even nicer that it was free because it is very expensive!



So cool!



Loved the Jellies!

On our way back, we stopped in at a Restaurant called Jimmy's Place in a cute town called Forest Park, IL. We waited a bit because it was Friday night, but their Pizza, Salad and Bread was thoroughly enjoyed by all four of us.

Saturday was our last day in Chicago and after hanging out at The house in the morning, we packed up and went to The Lincoln Park Zoo. Yet another awesome "free" thing Chicago offers. It was a beautiful fall day and perfect for spending outside. We walked through the park then through the zoo. We got to see a lot of animals and really enjoyed our time. From there, we headed home.

These 2 reminded me of Alex and Evan

The boys did great for their first trip to a big city. Although we didn't walk the city streets this time, we crammed a lot of fun in three days and they did amazingly well. We made a lot of great memories and we cannot wait to go back!