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

October 2014

November 2015, Waiting Room Shot