Cincinnati July 2011 Day 5 Last Day of Doctors Appointments

Today was the last day of appointments for Brayden. We had an appointment at 9:30 with the Genetic Counselor, 12:30 with the Physical Therapist, 2:00 with a counselor that assists with obtaining wheelchairs, braces, etc., and a 4:00 with the Pulmonery Doctor (to review test from yesterday). Once again, the schedule was thrown off.

We arrived for our first appointment and sat in the waiting room for over an hour. My mom and the kids came with us because we were going to go to the Museum in between appointments. I should have known it wouldn't work out like we planned! We saw the genetic counselor. Nothing much was new there. I had seen a genetic counselor in Rochester, but only because I wanted a third child. Otherwise, we probably wouldn't have seen one! She wanted to talk a little about me and the kids and our history. She said even though I am not a carrier, there is still a slight chance that Caroline may be a carrier. I was a little confused because I thought since I wasn't, her chances of being a carrier was zero, but there is a slim chance she can be. When she gets older, she will have that decision to make...on whether or not she wants to be tested. The thing that gets me is that even if I were to get tested before kids, it would have shown that I wasn't a carrier, so look where that would have gotten me.

After the Genetic Counselor left, the PT came in. She didn't bring wonderful news (like we always got from the clinic at Strong). Brayden's heel cords and hamstrings are VERY tight. She said he is on the road to an early seat in a wheelchair. This was really hard to hear because we are no where near ready for that. Will we ever be though? Probably not! In order to keep him on his feet for as long as possible, we really have to start pushing the stretching. The problem is that Brayden fights us (and she even saw how he fights us so I was glad for that). Todd finally told him that if he doesn't stretch, he will be in a wheelchair. He said he didn't care. He does care, that's the thing. We are going to just have to make it part of our routine!

She showed us a lot of stretches to do at home. Some we knew and some we hadn't seen before. By that time, Brayden calmed down and we actually stretched him in front of her so she could make sure we were doing it right. Then she observed him walking, running, etc. The suggestion we were given? Serial Casting. She ran it by Dr. Wong and she agreed. Because Brayden's range of motion was limited, they feel serial casting is going to be a good thing for him. At first my heart sank, but after she explained it I think it will be a good thing. For those of you who don't know what that is, it is when they place his foot at a 90 degree angle (or however degree they can get it too) and then they cast it. Basically it is a nice, long stretch! After a week, they will take the casts off and stretch him, see if the range of motion is better and cast him at a better angle. He may have these on for 2-4 weeks (changed weekly). This made Brayden VERY upset. We told him we could wait til after the summer so he can swim, but he is afraid of starting 2nd grade with casts on his feet because the kids will tease him. He just breaks my heart! When we get home, I will call around and see what we can figure out.

The MRI showed minimal scarring on Brayden, but they thought it looked great! They checked his spine and hips. After we are done with the serial casting, Brayden will have to wear night splints (AFO's), which again just gives him a nice long stretch while he is sleeping. I tried telling him they have some pretty cool looking "night boots" and he said he doesn't care. :-( Again, something we will have to work on.

We decided to not meet with the counselor for the third appointment. We really have no need to yet, since we have a stroller to use on long distances.

We did a lot of waiting today. This was Brayden waiting for us to talk to the PT.

Dr. Wong was really busy so she didn't have much time to sit with us to wrap up the appointment. We ate lunch and went to Pulmonology early hoping we could get done early and head to the museum. No such luck. We waited 1.5 hours for Pulmonology. See, doctors appointments can last ALL.DAY.LONG! Anyway, pulmonology said he looked great!

We will be going to Cincinnati every 6 months. We really appreciated all of the appointments we had and know that Brayden is in good hands! We went back to Newport, KY for dinner at Don Pablos aka "Don Queotes" as my mom called it! Here is a view from the balcony of the restaurant! Beautiful scenery!

Caroline's newest trick..."SOOOOOOOOOOO big!"

After dinner, looking at the ducks and the boats!

Beautiful sunset!

We were going to take a trolley ride, but the guy was rude and told Todd he should eventually be brought back to our van. Then he said in an hour or so. Ummm, no thanks! So we started driving home and met this really nice guy! We went on a carriage ride that was WELL worth the money spent! He was so good with Brayden! Brayden was afraid we wouldn't all fit in the carriage so he said Brayden could ride up with him! Here are the boys petting the horse!

Caroline was a little intimidated!

Here is the whole family!

Grandma and the kids!

Just the goofy boys!

Think I can drive this!?

Yep! He sure did! This guy taught Brayden how to drive and actually let him drive for a good half of the way! He said Brayden did an awesome job...like he had done it before!

Another beautiful view!

And don't miss the video of Brayden driving! He was so excited! I have never heard him talk so much, but he sure had a lot to say to his new friend! This guy, like I said, was awesome! He told us next time to get in touch with him and he would take us across the suspension bridge to Cincinnati and into Covington! Brayden was so excited and held onto his business card to show Todd (who ran to get the van). What a great way to end a rollercoaster of a week!

(oh and don't mind me talking to Caroline about how she is stinky! We forgot the diaper bag in the hotel and she is on antibiotics. Yikes!)

Cincinnati July 2011 Day 4 More Doctors Appointments

What a LONG day! We had to be up by 5:30 to get to the hospital at 6:30 for Brayden's MRI. This was no easy task on a normal day, but last night Nathan wouldn't go to sleep (until well after 11:30ish...I don't even know what time it was!) and Caroline woke up 3 times before we finally just let her crash in bed with me. 5:30 came to fast! We did it though! We got to the hospital a few minutes late, but not bad!

They were running late for Brayden's MRI. It was supposed to be 40 minutes, but it ended up lasting 1.5 hours. That is a long time for him to be expected to sit, movie or no movie! It took longer because he was tapping his hands to the beat of the MRI machine or was flicking his fingers in rhythm. Goofy guy! The extended time threw us off for the rest of the morning!

We had to run to get bloodwork done, which was a fasting bloodwork so we had no choice but to wait to eat! By the time the MRI was done, it was 8:45. We sprinted to the lab for the bloodwork and got there to find a sign saying they opened at 9, before that you were to visit the lab 2 buildings over and a floor down. We JUST came from over there, but had to sprint back. We had a 9:00 appointment (back in the building that the lab that was closed was in). We ran back and made it by 9:15.

The first scheduled appointment was an Echocardiogram. Then immediately after Brayden had an EKG. Both of these appointments were quick and easy! Brayden did great and sat patiently, even after the LONG MRI! The last appointment in the morning was with the Cardiologist! He said Brayden's heart looks great and he talked with us more about the SVT that Brayden also has (extra pathway in his heart). He confirmed that Brayden didn't use that extra pathway and there is no real concern right now. The only thing that really had us thinking was they wanted to know if we wanted to start him on cardiac medicine. Todd and I are so up in the air about that. He doesn't NEED it yet and there is no proof that starting it now will help him in the future. It won't hurt him either and it won't prevent him from doing anything. We decided to wait a year til his next appointment and they will inject dye at his next MRI to get a clear picture of how his heart looks.

We were starving after this and ran back to the hotel to get the gang (my mom, Todd's mom, Nathan and Caroline). We ran to get a quick bite for lunch and went back to the hospital for his last appointment, which was the pulmonologist. Brayden really wanted Grandma to go back with him so the three of us went in the room. Brayden had us laughing, he is such a little clown! He had to do a lot of breathing exercises and he did great!

We had a couple of errands to run after the last appointment and then we came back to the hotel to let the boys swim while I fed Caroline. We met up with a great friend at the Mets vs. Reds baseball game and had dinner in the a/c and went out to enjoy the rest of the game! It was a blast! The Mets won, which was a great way to end our day!

We wanted to get a picture of the scoreboard, but we were getting into trouble!

Tomorrow is our last day of appointments. It will be a long one because the appointments are stretched out. Our first one is at 9:30 so I can handle that! We have 4, the last one being at 4:00. The gang is going to head to the Cincinnati Children's Museum and we will swing by during one of our breaks (hopefully!). Sorry for the quick update, but it is late and I am EXHAUSTED (and am the only one still awake!).

Cincinnati July 2011 Day 3 First day of Doctors Appointments

Today was the first day of Brayden's appointments. He had 4 appointments to go to today. We started off at 9:30 with a Dexa Scan. They wanted to scan Brayden's bones to tell how "old" his bones are and give us an indication of how susceptible he is to fractures. We got there early and we were done before his appointment time!

Brayden and Alvin! In the Childrens Hospital garden!

We walked to the next appointment, which was scheduled for 10:30. Again, we got there early and was taken right back! This was for an X-Ray. They X-rayed Brayden's back and hand. This was another quick and easy appointment! Again, we were done before 10:30!

Brayden's next appointment wasn't until 11:00 so we walked to the gift shop and he picked out a puppy for Nathan and Caroline. Then we walked to the Guest Relations, who are WONDERFUL! They gave us free tickets to the zoo (for yesterday), discount tickets for the Aquarium (Saturday) and Entertrainment Junction and they also booked our room for us before we came and gave us a great discount! This hospital is VERY accommodating!

This afternoon Brayden was supposed to see the Neurologist at 11:00 and the Nutritionist at 1:40. We got to our 11:00 appointment early and everything went downhill from there. Dr. Wong (Neurologist) was running behind schedule so the plan was to have the Nutritionist come see us, then we would head downstairs for lunch and back up at 12:35 with Dr. Wong. We were excited because we thought our appointments would end early and my mom and Todd's mom were at the hotel with the kids waiting for us to get them for lunch! Didn't work out like we had planned!

The Nutritionist was so nice and we learned a lot from her! Basically we are going to watch Brayden's diet and try to get some of the weight off. He wasn't too happy, but as a family we are going to work together on this! After she left, they thought Dr. Wong would be right in, so we waited. She took longer than they thought and we didn't leave til 3:15! I felt awful that everyone was waiting at the hotel for us, with no restaurants in close walking distance (with the 2 kids and the heat!).

Waiting for Dr. Wong!

Anyway, we are very pleased with Dr. Wong. Brayden's doctor in Rochester hasn't ordered half the tests that Dr. Wong ordered and we are learning a lot of things that we should have learned 3-4 years ago! Brayden's hamstrings and heel cords are VERY tight. He is on the road to an early trip in a wheelchair if he doesn't start stretching more. BUT she is very pleased with his strength and she said he looks like he could be one of her "model" patients that stays on their feet longer! All we have to do is really push the stretching and diet and Brayden should be looking great when she sees him in 6 months or so! We can do this!

It was a lot of information. Todd and I are very overwhelmed with information (new information and old information that was readdressed). We are very irritated with the level of care that we received in Rochester and probably won't go back there again. It is worth it to bring Brayden the 8-9 hour drive to Cincinnati! We are switching him to Deflazacourt, which is another type of Steroid but is purchased from London. Hopefully with this, we will be able to curb some of his weight gain and his crankiness! She also added in an MRI tomorrow as well as bloodwork! He has not been getting enough Vitamin D so she is most likely going to increase that as well!

We went to Ruby Tuesdays for dinner and then went to the HUGE mall that is right down the road from our hotel! The boys found Mario and Luigi hats from FYE!

Tomorrow, it is MRI at 6:30, bloodwork right after and then 4 appointments from 9am to 1pm! Time to get some sleep!

Cincinnati Zoo-July 2011 Day 2

Today we went to the Cincinnati Zoo! It was a scorcher out there, but we made it! It would have been more enjoyable if it weren't 5000000000 degrees outside! The kids were awesome though and we saw all of the animals we wanted to see! The employees, not so welcoming but that is another story! Here are some of the pictures from today! I didn't get as many pictures as I wanted to get, but it was so hot!

We said, "Horses? At the zoo?" Apparently they are wild horses!

Caroline needed some snuggle time! She was so hot sitting in the stroller!

BIG BLACK BEARS!

This was by far our favorite part! We got to feed the giraffes! It was so exciting!

We didn't end up staying as long as we could have, but had a great time! The animals were definitely more lethargic from the heat so this is a zoo we have on our list to come to in the spring/fall when it isn't so hot and muggy!

Cincinnati July 2011

We heard about Cincinnati Children's Hospital from a few people in the DMD community and decided it was time to take a trip there ourselves. We have 13 appointments in 3 days (Tues-Thurs). We thought it would be fun to make a trip out of it and find some fun things to do while we were out of town! We were going to fly since Todd has free airfare, but the flights were booked so we decided to pack up the van and drive!

We left Saturday morning at 10:30 and got here around 7:30. We unpacked the car and the boys were anxious to get in the pool!

The boys in the pool!

Daredevil Nathan!

Daredevil Brayden

Today, we went to the Aquarium in Newport which was very nice! The kids really enjoyed looking at all of the fish and their favorite was the sharks!

There is a no stroller rule at the Aquarium, so Todd wore the baby on his back! She LOVED it!

The Sea Turtles


Oh No! It's going to get me!

We saw these little buggers! They were just babies!

We were walking over the alligators and turtles!

In the tank with the Jellyfish!

The family!
Grandma and the boys!

Last day at the Caboose Motel! Visiting the Petting Zoo

One bit Todd so he wouldn't let his hand get too close!

Caroline loved watching the animals!