On Sunday October 8th my parents came over to get Crew and to take the other 2 C’s and me to the airport. My Mom handed me something as we were getting ready to walk out the door and told me to place it in my wallet. It was a photo and emblem of Father Solanus Casey. I was brought up in the Catholic church and Father Solanus Casey was known during his lifetime as a wonderworker, for his great faith, and for his abilities as a spiritual counselor – but especially, for his great attention to the sick, for whom he celebrated special masses. She told me to keep it with me and that she prayed that we would find what we were looking for during our visit to the Mayo Clinic. We finished loading up the car and off we went to the airport.
We landed in Minneapolis after an uneventful flight. We picked up the rental car and drove an hour down to Rochester, MN. We checked into our hotel, got set up and went to dinner. While we were walking to dinner that night there were thousands of lady bugs everywhere, on the buildings, cars, and us. 🙂 I couldn’t help but to think that this was a sign of luck. After dinner we walked through town to a grocery store to pick up some simply groceries for the week ahead. The downtown area of Rochester is primarily made up of Mayo buildings. We got back to our hotel that night and settled in and went to sleep, we had a big day ahead of us the following day.
We woke up early on Monday morning to make sure we navigated our way through the Mayo campus to arrive at Camden’s Neurology appointment by 7am. We checked in at the desk on the Pediatric floor and took a seat in the waiting area. An older man named Bill came over with a cart of books and offered Camden a book of his choice to keep. I normally would not remember someones name that I met briefly, it is not one of my strong suits, but in this case I thought it was quite ironic because Craig’s Dad who passed away a few years prior, well…..his name was Bill.
Like most Dr. appointments, Dr. Renaud was running behind schedule, even at 7am on a Monday morning. They called us back around 8am, weighed Camden and completed all of the common intake procedures. We were placed in a room and within 10 minutes Dr. Renaud came in with another Dr. that was finishing up her residency. Dr. Renaud started by asking us to go way back to the conception of Camden. Where we were living, how old the house ways, did we have animals, what medications and vitamins I was taking and for how long I had taken them. She asked about morning sickness, weight gain, cravings, illnesses while pregnant, prenatal care, stressful events that took place while I was pregnant. She then asked about the delivery, she wanted to know every detail and everything that happened along the way. She then proceeded to infant life with Camden with similar type questions and vaccination history. She asked about both of our immediate and extended families, she drew a family tree while we were answering her questions. She observed Camden the entire time she was talking with us. She reviewed all of his testing up to this point with us. She searched their database for the two genes mentioned in a previous post; Can science offer answers? She asked if we had seen the brain MRI that was taken almost a year prior at U of M (Noodle Imaging). We had never been offered or had the knowledge to ask to see the images prior. She walked through all of the imaging with us and showed us all of the areas of his brain. She pointed out everything that appeared typical as well as areas that were somewhat interesting to her to explore further. Just her walking through the MRI with us made the trip worth it and this was just our first appointment. The way she was describing and explaining everything just made so much sense, a feeling that I had not had in this journey to this point. She completed a physical examination of Camden and he was surprisingly accommodating to her. He is typically terrified of most medical professionals but he took a liking to her. Upon the completion of her 2 hour extensive questioning and examination she decided that she did not want to do the previously scheduled EMG test because she did not think that he had a muscle disease after examination. She did however want to repeat his MRI since it had been almost a year since his last one and she wanted to see if there were any changes to the myelination of his brain. While he was ‘under’ she also ordered urine and blood samples. She wasn’t sure if we were going to be able to get in on such short notice for the MRI but she said she would try to get us in since we were only there for a few days. After some finagling we were scheduled for an MRI the following day but not until 1pm. We were extremely happy they were able to get us in and we knew it would be worth keeping a 3-year-old preoccupied all day to distract him from the fasted state that he needed to be in.
We left the appointment with a feeling we had not had up to this point in our journey. We felt like someone was equally as interested in doing everything she could to find the root cause of Camden’s delayed development and at a minimum explain, in detail, everything she could so we had a better understanding. We grabbed lunch in the area and then headed back to the hotel so Camden could nap before we headed back up for his Nuero Phsyc exam at 2pm. The waiting room for this appointment resembled a high-end law office, not a medical waiting area. It was classy and comfortable. I can’t recall the person’s name that we met with, but, of all the appointments this one was the most uneventful anyway. Which is probably why I can’t remember her name. She came out and took us back to her office for our meeting. She had toys in there for Camden to play with while she observed and asked us questions. At this point in the day Camden was over being cooped up in small exam rooms and offices. One of Camden’s interesting characteristics is that he doesn’t really play with toys, doesn’t color and like most kids, can only be distracted with the same 3 books for so long. His fine motor skills are extremely delayed and he hadn’t at this point really figured out what to do with toys he was unfamiliar with. Upon the conclusion of this meeting it was determined that Camden is not Autistic, which we had been told numerous times before. I don’t think I have written about his testing he went through a year or two ago but I will get to that at some point. She pointed out that he makes great eye contact and is very social and engaging. Having an autism diagnosis would open up additional services that we could get Camden into to help him progress but it has been determined that this is not the cause for his delays. She gave us some tips and suggestions on how we could continue to help him at home and off we went.
That night we met up with Craig’s Aunt Carol and Cousin Noel and her two adorable girls, Avyn and Amelia. They drove down from the St. Paul area to meet us for dinner. They went out of their way to come meet us and we could not have been any more grateful for their visit. It was so great to see familiar faces and to officially meet Noel’s younger daughter Amelia. Family is good for the soul.
The following morning we woke up and decided to drive to the Mississippi River since we had to kill time and keep Camden’s mind off of a lack of food intake. We found a cute little playground next to the river where we could push Camden on the swings. He is always up for a push on a swing. 🙂
After the park we got back into the car and drove back to Rochester. I had found an indoor play area prior and decided we would take him there to let him have some fun since the weather was cooler. It was essentially a big warehouse filled with inflatable bounce houses and slides. We had a lot of fun and before we knew it we needed to head to the hospital for his MRI.
We got to the hospital and checked in. We waited quite a while for them to take us back to the triage area and then waited even longer for them to take him back for the MRI. We changed him into his gown and because he had not napped at all to this point we turned on Daniel Tiger on my phone and I laid in the hospital bed with him. We thought we were prepared for his MRI since we had done this not even a year before. They came to get us and we both went back with him. We weren’t really sure where we were headed but we quickly found out. We were back in the MRI room. The Anesthesiologist met with us briefly and explained what was about to happen. I was in complete shock, this is not how they had done it at U of M. Within 2 minutes of taking us back they had him laying on the table with a team of people around him. They put a mask on his face as he fought to push it away and 15 seconds later his eyes rolled back in his head and he was out. This is not anything that I wish upon anyone to see, it was quite traumatic for us. They said it was going to take an hour and they ushered us to the waiting area with a number. They had screens that showed patients numbers and the status of their procedure. We decided that we needed to keep preoccupied so we went to grab some food in the cafeteria. We finished and went back up to the waiting area. I stared at the screen for the next hour and a half while Craig was playing games on the computer located in the same room. He was getting worried and wanted to keep himself busy. The receptionist in the room told us she was leaving for the day and that they would come up to get us when his status changed on the screen. His procedure started at 2:45pm and it was now 4:30pm. When your child is under general anesthesia and it is taking well over the time they told you, you start to panic. His status finally changed and there was a huge sense of relief that came over us. We couldn’t wait to get back and snuggle our little monkey. Before long someone came and got us and we were reunited. They said he was a great patient and that he woke up perfectly from the anesthesia. We left the hospital around 6pm and went to grab dinner; after all Camden hadn’t eaten since the breakfast I gave him early that morning. No, I didn’t follow the protocol they had given me but I knew that they weren’t going to take him back right when his appointment was, and I was happy I fed him. 😊
We woke up the next morning and headed over for an eye exam. Camden had been followed at U of M for his delayed visual maturation and intermittent exotropia but we thought we would have them take a look too since it is all a piece to the pie. The Dr. that saw him knew his eye team at U of M. Nothing much came out of the appointment other than him saying that the structure of his eye looked good, there was nothing that looked concerning in the back of the eye and that he should continue to be followed back home. We didn’t have anything scheduled for the rest of the day so we went to grab lunch and then went back to the hotel for Camden’s nap. Later that evening we met up with someone from back home, Lauren Easterbrook. What a long story, but, the long and the short of it (a Greg Lyczak/my Dad phrase) is that I used to watch her and her sister during the summertime when I was in high school and their parents were at work. It is a very small world. Camden is in the special education preschool here in Plymouth and his speech therapist at school is Mrs. Easterbrook. When I met her within Camden’s first few weeks of school I couldn’t put my finger on where I knew her from…well I figured it out. Fast forward a couple weeks…she found out we were going to Mayo clinic and she told me one day at school that Lauren worked at Mayo and was going to school to be a Nurse anesthetist. We exchanged numbers and we connected for dinner. It was great to catch up and enjoy dinner with someone from home.
It was Thursday morning and we were so anxious for our meeting with Dr. Renaud. This was our last day at Mayo and our wrap up meeting to learn what, if anything, they had discovered this week. We got up, packed up the car and headed off to our appointment. I can’t remember what point in the week that we discovered that there is an underground pedestrian subway that connects all of the Mayo buildings in addition to a few hotels and parking. The first day we walked outside in the freezing weather prior to discovering that if we took the elevator from our floor in our hotel to one level below the lobby we were connected to this amazing walkway filled with a lot of people, shops and stores. What a find 🙂
We made our way back up to the same waiting room where we began the week. We checked in and waited to be called back to see Dr. Renaud. After a bit of a wait we were called back, triage and placed in the same room we were in 3 days prior. Dr. Renaud came in and asked us about the week and reviewed the imaging from his MRI. She showed us this MRI side by side to his one he had a year prior. His brain had myelinated a year within the year time period but was still delayed. She explained that it was a positive sign that it had progressed as some conditions cause the brain to stop myelination and in others regress. A lot of his blood and urine labs were not back and wouldn’t be for weeks. She said she was going to set up a Skype appointment for 3 – 4 weeks out to get a final review of all of her findings. She explained that they are able to find the cause of delays in about 55% of delayed children which is an increase from 5 years ago when it was 30%. She explained that they are learning so much more and that this is primarily what she sees in her practice is kids that are delayed without explanation. She does a lot of research on Leukodystrophy and this is her passion. She was very detailed in every explanation with us regarding Camden’s results and what they ruled in, or out, and why she was doing them. She explained that we do not have the ability to look at the brain on a cellular level so even though all of the parts are there and everything appears typical, with the exception of the delayed myelination, that there could be more going on that we don’t have the ability to see. She said that there will never be a magnet (MRI) strong enough to see the brain at a cellular level because if they made a magnet that strong it would alter the cells in which we are made of. She said we have come a long way but there is still a long way to go. With all of this being said we still needed to wait for all of Camden’s blood and urine labs to come back before she could fully review with us. We set up a Skype appointment with her for a few weeks later and we were back to doing what we have come to do best….wait.
Until Next Time,
3 C’s and a K