Double the Love

Friday, December 11, 2015

Chicago Series, Part 3

Chicago Day 3, November 25, 2015

HAPPY BIRTHDAY ERIC!

Evan taking a picture of Daddy on his tablet

Happy Birthday Daddy!

Opening Presents and Cards

Since Day 2 was consumed with the Hospital Visit, we had to cram a whole bunch into Day 3 which just happened to be Eric's birthday. After a quick breakfast at the house, we headed to The Museum of Science and Industry. This museum would have been cool on a normal day, but this time of year they have a special exhibit called Christmas around the world and Holiday of Lights. That made it even cooler. I love Christmas so when I found out this was going on, I wanted to experience it. I am not sure if we will ever be back to Chicago this time of year, so we took advantage. The center tree was 45 feet tall and had 30,000 lights on it. I was in awe of this tree and could have looked at it for hours. They had it up on this big pedestal surrounded by Christmas Presents. Amazing. Around the main floor of the museum there were probably another 30-40 trees from different countries that were decorated. I am so glad that we got to see it. I think our favorite section was the Science Storms. We spent the most time in this area learning about Typhoons, Tornadoes, Fire and Wind. We also enjoyed the Transportation Gallery where we got to sit in a Boeing 727 and the Great Train Story which was a huge display of toy trains in all different settings. They even had a mirror maze which was super fun for the boys! We could have spent the whole day there, but we had other things to fit in, so maybe we will go back the next time. I definitely recommend this Museum if you are going to Chicago. Here are some pics from that visit.

Family Shot

The Mother Tree

Some of the other trees

Exploring the Science Storms

Trains

Barge and Trains

Transportation Gallery

The Boeing 727

The boys sitting in the Airplane seats

Transportation Gallery

Eric and his boys

Experiencing the force of Wind

My FAVORITE Pic

Cool shot of the tornado

What a mudslide looks like as it is forming

Family Selfie

A view from the 2nd Floor

We were pretty hungry when we left the MSI and we were surprising the boys with a visit to The Chicago Children's Museum. So we headed to Navy Pier to have some lunch at the Food Court. Eric got his Chicago Hot Dog he had been waiting for. Then, we headed to the Museum. Last year we visited and it was such a huge hit with the boys that we decided to do it again. The first room was different from the last time, they had it set up as a winter wonderland called snow much fun with sleds, fluffy snowballs, padded ice blocks and an imitation skating rink. We spent a lot of time in there until we forced them to move on. They visited the fire station, the building area and of course the Dinosaur Expedition. (Evan's Favorite) One area we didn't visit the last time was the Water Ways which we let Evan do this time. (Alex zonked out) He of course got drenched but had the time of his life doing it.

Another Family Selfie

A nice lady took this one of us

So Excited!

I couldn't resist

Firefighter #1

Firefighter #2

"Snow much fun" area

Evan collecting the snowballs

Building an Ice Tower

Evan and Daddy building away

Alex splashing in the water

HE HAD A BLAST!

SO MUCH FUN

Someone could't make it through

The Museum closed at 5 and I really wanted to go to Millennium Park to see Cloud Gate and the Christmas Tree which was lit the night before. After circling the block three times, we found a spot to park on the street and walked up to the park to see the tree, the ice skating rink and the bean (Cloud Gate). It started to rain, so our time was cut short, but it was worth the stop. We were ready for dinner anyway.

The Tree at Millennium Park

Love this Pic (Eric Williams took this one)

So Pretty

The Tree from afar

Another one of my favorites

Our Family

We snuck one in

Last year when we visited, we found this really cool Family Italian restaurant in Forest Park that was close to where were staying called Jimmy's Place. That was where we had Eric's birthday dinner. Antipasto Salad, Pizza, Fresh Baked Bread and a slice of Oreo Ice Cream pie and a slice of Turtle Ice Cream pie for dessert. Perfect ending to our last night in Chicago and to an amazing day!

Alex and Eric

Eric and Evan

The Boys were excited for Dessert

Alex is thanking the waitress for his pie

We love Jimmy's Place!

Next up....Our Last Day, Thanksgiving Day at The Shedd Aquarium

Tuesday, December 8, 2015

Chicago Series, Part 2

Chicago Day 2 - November 24, 2015

The whole purpose of our trip to Chicago was to come for a follow-up visit to the Shriner Hospital. We visited last year and saw Dr. Smith, an Orthopedic Surgeon. This year in addition to Dr. Smith, we are seeing Dr. Silver, a Neurologist. I am also more prepared this year with X-Rays and MRI copies so the Doctors had a better understanding of Alex.

We first met with Dr. Silver. We did a brief history from birth until now. He took a lot of notes and viewed Alex's MRI scan from when he was 3 months old. His insight into CP was well received but nothing new in addition to what we already knew. His CP is on the moderate end with developmental delays. We talked about his sleep issues as well as his lack of focus on certain tasks. It is not uncommon for kids of his age with or without CP to have sleep issues. So with this being said, it could be age related or CP related. There is really no way to know unless he outgrows it. I will say that his sleep has gotten better. Over the summer he was waking up an average 5 out of 7 nights, now it is between 2-3. Some of those nights he will go back to sleep fairly quickly, others he does not. He suggested I start to keep a diary of Alex's sleep schedule to compare with his behavior/focus while he is at school to see if they are related to one another. Whether he gets good sleep or not, I still think that Alex's focus is much more attentive in the morning versus the afternoon. He tires more easily that typical children his age because of the amount of energy he uses throughout the day to complete certain tasks such as walking in his gait trainer and working with his therapists. Dr. Silver felt strongly that these issues are related and I agree.

The other side to the whole behavior thing, is to see if there is a possibility of him having ADHD. Dr. Silver suggested that Alex have a Psycho-Educational Evaluation. This is something that I will have to look into with his Special Ed teacher. Not even sure if it is a possibility.

After the Evaluation with Dr. Silver, we met with Dr. Smith (Orthopedic Surgeon) We initially met Dr. Smith last year when we first visited the hospital so this was just a follow up visit. He looked at Alex's most recent hip x-ray from August of this year and said that he would recommend surgery within a year or so on his hip so it doesn't dislocate. Right now he is around 35% out and Dr. Smith doesn't want it to get above 50% because then there is risk of it dislocating. There are other options such as muscle lengthening in the hamstring that can give Alex more flexibility and may help the hip as well. This was a lot to take in and I don't think I would want to travel to Chicago to have such a serious surgery. This is something Eric and I need to discuss more in depth and even think about getting a second opinion closer to home. We have an appointment with his Physiatrist at the end of this month so we are going to start there to see what he has to say.

We met with the PT, OT and a Psychologist to discuss his current therapies and talk more about the sleep/behavior issues.

The only person we did not meet with was a speech therapist, but she called me the other day and we spoke about technology and devices. I know one of the communication devices Alex uses at school in my opinion is pretty dated. She suggested finding something that he can grow into technology wise and there are a lot of options out there that resemble the iPad. He does have a mini iPad but I am not sure he really uses it as a communication device but there are apps out there that we can possibly get for ours. This is something I will definitely look into.

It was a long appointment, but very productive yet overwhelming at the same time. Even though it is a lot to take in when we do this appointment, I love how we get to meet with everyone and touch on every area of Alex's needs. I am sure we will return again in the future.

The appointment took longer than expected and we were all pretty wiped out after lunch so we went back to the RMH to rest and call it a day. We figured we would go out to dinner and that be it, but a Volunteer group came in that night and we were able to stay in, get to bed early and get ready for our big day out on Wednesday!

Next up....We celebrate Eric's Birthday with a fun filled day!

October 2014

November 2015, Waiting Room Shot

Wednesday, December 2, 2015

Chicago Series, Part 1

I decided to split our Chicago trip into a 4 part series and blog about each day individually. I figured if I crammed all of the amazing moments into one blog, it will be long and drawn out and I might lose you. So here we go...

Chicago Day 1 - November 23, 2015

We hit the road at 7:30 AM. The drive (which is 5 hours for us) didn't seem as long as the first time we went last October. We arrived at the Ronald McDonald House at 12:30 PM, but our room wasn't quite ready so we decided to eat lunch first and let the boys play on the Piano and in the Play Room. Staying here has GREAT Advantages. The house is beautiful for one and has so many nice amenities. It is like a huge house with lots of bedrooms. There is a shared Kitchen - which is huge, shared living areas (one on each of the 3 floors) and the 4th floor has been turned into a Rec Room since last October. We used this room quite a bit for Pool, Air Hockey and Ping Pong. The house is available to families that are visiting the local hospitals and is much more affordable for us than a hotel downtown. We get to bring snacks and drinks and even food. They have companies who come in to volunteer and cook meals so we sometimes get a great home cooked meal while we are there too! The biggest disadvantage for us I would say is that is is a 20-30 minute drive to downtown Chicago which can be grueling with traffic going to and from. I would say that all of the advantages outweigh the one disadvantage.

Ronald McDonald House

Kitchen

Looking down from the 3rd Floor

Looking up from the sitting area

This one is from last year. Forgot to get one this year. :(

After lunch we relaxed and spent some time in the Rec Room before heading downtown for the evening. I wanted to walk the Magnificent Mile this time because I knew all the trees would be decorated and we didn't do it last year. We took the boys to the Disney Store, The Water Tower Place - which is a 7 story mall. Alex and I really enjoyed riding the glass elevator from the 7th floor all the way down to the ground level. Eric and Evan....not so much. LOL! We visited the Lego store which the boys loved as well as wrote letters to Santa at Macy's on our way out. We picked Pei Wei (our favorite) for dinner and took a few more pictures before heading back to the RMH for the night. It was a cold night out but worth it for the experience.