Tuesday, December 31, 2013
Saturday, December 21, 2013
The Mayo Clinic Adventure
C, Granny, and I hopped in the car this past Monday morning for the 9.5 hour drive to Mayo Clinic.
We decided to stay at a "family resort" outside of Chicago because (a) it was going to snow (b) it was less than 2 miles from the path we would be traveling and (c) there was pool and bowling alley in the hotel. The first leg of the drive was a piece of cake and as we checked into the hotel the snow began to fall. It snowed steadily that evening and we were glad we decided to take the extra travel day. We came to discover the pool and bowling alley were in a different building on the campus and due to the snow decided we didn't want to go back outside with wet hair. So, we drove into the town of Itasca. We grabbed a coffee and found America's Best Train, Toy, and Hobby Shop. They had more Geotrax and Cars stuff than we have ever seen in one location. We picked a treasure or two after about an hour of browsing and were off to a local pizza place for yummy dinner.
Tuesday morning we had breakfast and jumped back in the car to Madison for lunch and a visit to the Children's Museum. We had so much fun running around and playing. This museum has building toys, an art area with lots of projects, and a huge area to run ramps, climb stairs, slide down slides and more. It was a great stop and everyone had fun. Back in the car we went for the final leg of our trip. The little one had a nap in the back. Granny and I were excited to cross the Mississippi and enjoyed the landscape changes. We arrived in Rochester after dark, stopped for a bite to eat and were off to get settled in to our home for the week.
We decided to rent "4 Private bedrooms in Rochester, Minnesota". For a fair rate we rented the downstairs from someone's private residence. I had hemmed and hawed about this decision for quite some time as I was nervous about staying with a stranger; but just a hotel room for the three of us for the week sounded tight. We were to have 4 bedrooms, a living room, and bathroom. We found the house and met our host and her beautiful baby. She only had two beds made up for us (which is all we really needed) and we were surprised to find space heaters in every room, outlets with no plate covers, open vents, and a few other minor issues. When I asked how we were supposed to come and go, there was no key available for us "yet". And the wi-fi was down. We unpacked and got settled in, ready to make the best of it. As the night progressed it became frigid. It was the kind of camping cold where you can not move under your enormous pile of blankets because it might break the seal and the air could enter. As I lay in the cold not sleeping I concluded we would leave in the morning, this was completely unreasonable.
At 4 am I awoke to C waking abruptly coughing, and throwing up all over our bed. There was no bath tub, no paper towels, no extra sheets, and we had to leave the bed in the cold to clean it up. I pulled out the wipes, threw the sheets in the wash (benefit of staying in someone's basement), got C settled in with blankets and her iPad and packed up all our stuff. I called and made a reservation at the hotel I had been considering while hemming and hawing. We could check in at noon. I should mention she was not sick on the way there or again after we left, I think it was related to the cold. Also, our hosts apologized, there is usually heat and it was supposed to be fixed before our arrival, but they did not think it was important to tell us before our arrival or during our stay.
C had an appointment at 7:30 and then one at 10:30. We drove to the Mayo Clinic complex, Granny dropped us off at what we thought was the right building, and went to park the car. We were a few buildings off, but everything is connected by tunnels and we made it to the first appointment tired, but on time. C doesn't like medical environments, the more medical it seems the less she likes it. When I say she doesn't like it I mean: "if someone comes near her in a medical environment she screams like you are peeling off her toenails." We have never had a successful blood pressure reading as she will not calm down enough for it if someone is near her. After much screaming they had checked her height and weight. We saw a neurologist who is the gatekeeper to get into the speech and language department we were really there to see. We had time for breakfast in the cafeteria before headed to see Dr. Strand, a leading apraxia researcher who is part of the team I heard present at the national conference last year. At this point we had been up since 4 am and C was holding it together, but was not at her best to meet someone new for an evaluation.
Corinne was semi-cooperative for the first day of the evaluation. The office had a sofa and a kid size table and chairs. This made C much more comfortable than a room with an exam table. They did a receptive language test, we discussed her skills and challenges, and discussed the intensive program they have for a select few appropriate candidates. This first day, she told us she did not believe C was ready for the type of therapy that is most effective in treating Childhood Apraxia of Speech. The therapy in their intensives use no games or pictures. The focus is getting as many repetitions as possible by the child watching the therapists face and mimicking what the therapist does. When we completed that first appointment we grabbed lunch and were able to check into the hotel.
Oh, the luxury! There was heat! There was a pool in the building! It is connected to the Mayo system through the indoor tunnels! We had keys! It was lovely. Joy and relief were felt in our very nice mini-suite with a half wall between the sitting room and beds and everyone laid down for a much needed nap. It was an excellent decision to move to the hotel. The pool was 3 feet deep all the way around, Corinne could touch all the time and loved it.
The following days, we had additional appointments with Dr. Strand and she was surprised how different C behaved from that first meeting. We learned and practiced some new strategies and are stepping back to focus on empowering C to know she has control. We are doing large and small, tight and loose, and fast and slow motions to learn what they feel like on our big muscle groups and then moving to our smaller muscles in our hands and face. We are also using physical and spatial cues to elongate or shorten (control) sounds. Her ability to maintain focus, ability to control her body, and language (not speech) are the suggested focuses for the time being.
The ability to walk from the hotel to our appointments, stores, restaurants, and more without stepping foot outside was fantastic. There is a grand piano on the subway floor of the building our appointments were in. Most times, someone was playing the piano or choirs were singing, and crowds were gathered to enjoy. There are volunteers around every corner waiting to direct you as you find yourself lost (again) in the maze of tunnels. Mayo was efficient and well planned. It was an unusual feeling looking around any room or hall and trying to imagine each person's story and what brought them there. We only left the enclosed tunnels of Mayo once more to visit Costco, and a blow up jumping place. The Costco was empty. There were no lines or crowds the week before Christmas and this was busy for them. Minnesota is strange land.
Out last appointment wrapped up at noon yesterday. We were able to conference Kevin in for the recommendations, questions, and observation summary. We were on the road by 1 pm and drove straight through to arrive home at 1:45 am this morning. C changed into PJs in Chicago, read a story, and went right to bed. I can not thank my mom enough for joining us on this adventure. I am not sure what we would have done without her. She was a great driving companion well into the night when we were getting sleepy and silly. It is so nice to be home. We missed Kevin and the hounds like crazy.
We decided to stay at a "family resort" outside of Chicago because (a) it was going to snow (b) it was less than 2 miles from the path we would be traveling and (c) there was pool and bowling alley in the hotel. The first leg of the drive was a piece of cake and as we checked into the hotel the snow began to fall. It snowed steadily that evening and we were glad we decided to take the extra travel day. We came to discover the pool and bowling alley were in a different building on the campus and due to the snow decided we didn't want to go back outside with wet hair. So, we drove into the town of Itasca. We grabbed a coffee and found America's Best Train, Toy, and Hobby Shop. They had more Geotrax and Cars stuff than we have ever seen in one location. We picked a treasure or two after about an hour of browsing and were off to a local pizza place for yummy dinner.
Tuesday morning we had breakfast and jumped back in the car to Madison for lunch and a visit to the Children's Museum. We had so much fun running around and playing. This museum has building toys, an art area with lots of projects, and a huge area to run ramps, climb stairs, slide down slides and more. It was a great stop and everyone had fun. Back in the car we went for the final leg of our trip. The little one had a nap in the back. Granny and I were excited to cross the Mississippi and enjoyed the landscape changes. We arrived in Rochester after dark, stopped for a bite to eat and were off to get settled in to our home for the week. We decided to rent "4 Private bedrooms in Rochester, Minnesota". For a fair rate we rented the downstairs from someone's private residence. I had hemmed and hawed about this decision for quite some time as I was nervous about staying with a stranger; but just a hotel room for the three of us for the week sounded tight. We were to have 4 bedrooms, a living room, and bathroom. We found the house and met our host and her beautiful baby. She only had two beds made up for us (which is all we really needed) and we were surprised to find space heaters in every room, outlets with no plate covers, open vents, and a few other minor issues. When I asked how we were supposed to come and go, there was no key available for us "yet". And the wi-fi was down. We unpacked and got settled in, ready to make the best of it. As the night progressed it became frigid. It was the kind of camping cold where you can not move under your enormous pile of blankets because it might break the seal and the air could enter. As I lay in the cold not sleeping I concluded we would leave in the morning, this was completely unreasonable.
At 4 am I awoke to C waking abruptly coughing, and throwing up all over our bed. There was no bath tub, no paper towels, no extra sheets, and we had to leave the bed in the cold to clean it up. I pulled out the wipes, threw the sheets in the wash (benefit of staying in someone's basement), got C settled in with blankets and her iPad and packed up all our stuff. I called and made a reservation at the hotel I had been considering while hemming and hawing. We could check in at noon. I should mention she was not sick on the way there or again after we left, I think it was related to the cold. Also, our hosts apologized, there is usually heat and it was supposed to be fixed before our arrival, but they did not think it was important to tell us before our arrival or during our stay.
C had an appointment at 7:30 and then one at 10:30. We drove to the Mayo Clinic complex, Granny dropped us off at what we thought was the right building, and went to park the car. We were a few buildings off, but everything is connected by tunnels and we made it to the first appointment tired, but on time. C doesn't like medical environments, the more medical it seems the less she likes it. When I say she doesn't like it I mean: "if someone comes near her in a medical environment she screams like you are peeling off her toenails." We have never had a successful blood pressure reading as she will not calm down enough for it if someone is near her. After much screaming they had checked her height and weight. We saw a neurologist who is the gatekeeper to get into the speech and language department we were really there to see. We had time for breakfast in the cafeteria before headed to see Dr. Strand, a leading apraxia researcher who is part of the team I heard present at the national conference last year. At this point we had been up since 4 am and C was holding it together, but was not at her best to meet someone new for an evaluation.
Corinne was semi-cooperative for the first day of the evaluation. The office had a sofa and a kid size table and chairs. This made C much more comfortable than a room with an exam table. They did a receptive language test, we discussed her skills and challenges, and discussed the intensive program they have for a select few appropriate candidates. This first day, she told us she did not believe C was ready for the type of therapy that is most effective in treating Childhood Apraxia of Speech. The therapy in their intensives use no games or pictures. The focus is getting as many repetitions as possible by the child watching the therapists face and mimicking what the therapist does. When we completed that first appointment we grabbed lunch and were able to check into the hotel.
The following days, we had additional appointments with Dr. Strand and she was surprised how different C behaved from that first meeting. We learned and practiced some new strategies and are stepping back to focus on empowering C to know she has control. We are doing large and small, tight and loose, and fast and slow motions to learn what they feel like on our big muscle groups and then moving to our smaller muscles in our hands and face. We are also using physical and spatial cues to elongate or shorten (control) sounds. Her ability to maintain focus, ability to control her body, and language (not speech) are the suggested focuses for the time being.
The ability to walk from the hotel to our appointments, stores, restaurants, and more without stepping foot outside was fantastic. There is a grand piano on the subway floor of the building our appointments were in. Most times, someone was playing the piano or choirs were singing, and crowds were gathered to enjoy. There are volunteers around every corner waiting to direct you as you find yourself lost (again) in the maze of tunnels. Mayo was efficient and well planned. It was an unusual feeling looking around any room or hall and trying to imagine each person's story and what brought them there. We only left the enclosed tunnels of Mayo once more to visit Costco, and a blow up jumping place. The Costco was empty. There were no lines or crowds the week before Christmas and this was busy for them. Minnesota is strange land.
Out last appointment wrapped up at noon yesterday. We were able to conference Kevin in for the recommendations, questions, and observation summary. We were on the road by 1 pm and drove straight through to arrive home at 1:45 am this morning. C changed into PJs in Chicago, read a story, and went right to bed. I can not thank my mom enough for joining us on this adventure. I am not sure what we would have done without her. She was a great driving companion well into the night when we were getting sleepy and silly. It is so nice to be home. We missed Kevin and the hounds like crazy.
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