Double the Love

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.

Magnificent Mile

Lego Store

One of my favorite photos

The boys playing Legos

Lego Santa

7 Story Elevator

Writing his letter to Santa

Dropping it in the box

Writing his letter to Santa

Dropping it in the box

Magnificent Mile

Next up...The Shriner Hospital Appt.

Monday, November 16, 2015

Chicago Bound

We will be in Chicago next week at this time and we are all pretty excited. This will be our second trip to the Shriner's Hospital of Chicago. Last year we saw an Orthopedic Surgeon who we will see again this year along with a Neurologist.

Chicago is only a five hour drive for us, but we like to make a trip out of it since there are so many cool things to see and do in Chicago. The boys had a ball last year when we went in October.

This year we scheduled the trip around Thanksgiving break from school, so there are a bunch of cool festive things that we might get to do this time around. Like the Christmas Tree lighting in Millennium Park, Ice Skating Rinks and The Thanksgiving Day Parade Downtown. On top of the Shedd Aquarium, The Adler Planetarium, Field Museum and Children's Museum which are all on our list as well.

The Magnificent Mile Lights Festival is on Saturday before we arrive so I am looking forward to walking through and seeing all of the Christmas Lights as well!

Evan has been talking about our trip for a couple of weeks now. He has been counting down on the calendar since we turned it November 1st. I heard him talking to Eric this morning about packing!

I am glad that the boys get excited for trips and love to travel just as much as Eric and I. It makes it that much more fun. I can't wait to share our experience and photos with you when we return home. Here are a few good ones from our trip last year.

Tuesday, November 10, 2015

Evan, I am proud of you

Just recently, I have noticed Evan helping Alex more and more. I don't want this to go unnoticed.

Evan has always been really good about helping ME with Alex if I need him to grab something or give Alex something but that has always been with me asking. The things that he has been doing for Alex lately have been all him.

We are very adamant about giving Alex choices (since he is non-verbal and cannot tell us) so Evan has been really good about bringing Alex his choices and letting him choose.

The other night I was working with Alex on his colors and I was using markers to see if he would pick the correct one. When I was done, Evan came up and took over and was working with Alex the way I was.

He also helped him open his fruit snacks the other day and then last night was the icing on the cake for me. When the boys come home from school the first thing we do is wash our hands and have a snack. Evan got done with his snack first and instead of going into his playroom he went down to the family room. I was cleaning Alex up and getting ready to take him down, when I see Evan laying the blanket down on the floor for Alex so he could stretch out. As I was coming down the stairs, I passed Evan coming up and when he came back down he had an armful of toys for Alex to play with.

Tears welled up in my eyes. I couldn't believe it! I praised him and thanked him for doing that for Alex and told him what a great Brother he is.

I hope his love and devotion to Alex never goes away and I hope that he will go out of his way to helps others in need as well.

I know it isn't easy for Evan not having the playmate he desires in Alex, I just hope that their love and bond will always be there. They need each other even though they may not realize that now.

I have mentioned in the past that Alex has a different "buddy" each day at school and the teacher decided to go in alphabetical order to give every kid a chance. Well, Evan is last alphabetically in the class and he was so upset that he had to go last. I kept telling him that he is Alex's buddy everyday! Well, a couple of weeks ago, Evan's day came and he got to be Alex's buddy. The first thing he said to me when he stepped off the bus was: 'I got to be Alex's buddy today'. He was so proud.

Evan, I am proud of you. You have no idea how much you mean to all of us, but especially Alex. He looks up to you and is so lucky to have you.

The Happiness, The Love

Wednesday, October 21, 2015

Fieldtrip: Upland Hills Farm

Today Alex and Evan had a field trip with their class to Upland Hills Farm. We got to go on a hayride, meet and pet a bunch of farm animals and pick a pumpkin in the end. They even got to milk a cow! The morning started out rainy, but turned out to be such a fun day!!