Thank You Denver

Maddie’s visit to Children’s Hospital Colorado is complete. I couldn’t think of a more beautiful place for a destination doctors visit. Oh the things we do for an Angelman child. We were able to make a mini vacation out of it.

Not only was our family of three on the trip, we also brought along my mother in law. It was actually one of the best things we did. We actually got the suggestion from another Angelman family who visited a clinic. My mother in law was there so we could focus on answering the doctor’s questions while she took care of Maddie.

I know some of you want to get straight into the details of the appointment, which we will cover more on Friday’s podcast, but I want to highlight some of our adventures while in Denver.

Now let’s just get something out of the way, the Denver Airport is horrible. I never understood why people complained about airports. Even though they’re inconvenient, they do their job, until Denver. There’s a whole bunch of conspiracy theories that surround this airport, and I’ll add one more. The Denver Airport was designed to torture tired travelers, making them either stay longer in Denver, or totally avoid flying into or out of that airport again. With that being said, we’ll be back in August.

My favorite thing that we did while in Colorado, was visit the Garden of the Gods. This amazing rock formation was created in the last ice age. I oftentimes feel like I don’t have the necessary skills to describe how I’m feeling. In the case of Garden of the Gods, there are very few writers who would be able to describe it’s beauty.

Now this beautiful formation is free to the public. I would suggest stopping by the Visitor's Center to check out all of the trails the park has. We chose a handicap accessible trail so we could put Maddie in a stroller. Those of you whose angel uses a wheelchair, this trail would be perfect for you as well.

The same day we visited the Ghost Town Museum in Colorado Springs. This small museum was a gem. We got to see a mock western gold town and see some older artifacts. Maddie even got to sit in her first saddle, of course it wasn’t on a real horse. Maddie’s favorite thing to see was the self playing piano, which she found a lot of joy in.

The day after the Garden of the Gods, we drove up into the mountains to visit Red Rock’s Amphitheater. This world famous concert venue was beautiful to see. You could see views down into Denver, but if you’re scared of heights it might be a little daunting. Also it’s not the most friendly for non mobile people. Being that high above sea level, did leave me short of breath with Maddie strapped to my back. Our little one is starting to get heavy.

We stayed close to town our third day. We visited the Rocky Mountain Arsenal Wildlife Rescue. This wildlife rescue is set on a decommissioned army base that used to produce chemical weapons. You can drive around the park for 11 miles and you’re able to see deer, bison, prairie dogs, and other varieties of wildlife. Also the Colorado Rapids MLS team plays nearby, so you get to see the stadium as well if you’re into that sort of thing.

The last tourist destination we visited was right in downtown Denver, the Denver Aquarium. This aquarium is one of the best we’ve been to. While in Austin for the family conference, we visited the Austin Aquarium. Believe me when I say the Denver Aquarium blew that one out of the water. We saw a wide variety of fish, sharks, sting rays, and they even had a Bengal Tiger.

Now that we’ve gotten all of the tourist fun out of the way, let’s talk about our appointment. Children’s Hospital Colorado made our check in process extremely easy. There were multiple personal available for the check in process and from walking in the front door to getting to the multi specialty clinic took a matter of 10 minutes.

Maddie was extremely tired for her appointment which made things a little difficult. We were not looking at the calendar for this appointment. Not only is Colorado a two hour time difference from Michigan, we had our appointment the Monday after daylight savings time. So Maddie’s internal clock that we worked so hard to regulate, was thrown all out of whack. Again, this is why it was so helpful to have Nicole’s mother with us.

During our visit we saw a physical therapist, an occupational therapist, a speech therapist, a geneticist, a dietitian, and neurology. Nicole and I game planned what were going to ask the night before over dinner. However, we should’ve written everything down because by the time we were in the room, my mind went blank.

This initial visit was very helpful however. I say initial visit because we are going back to see everyone again in August. I think I built this visit up in my head as a be all end all. At the end of the day this clinic visit is a doctor’s visit, except all of your doctors and specialists are experts in Angelman Syndrome.

I say I built this visit up in my head because these experts still need to get to know their patient. This visit was akin to a brand new PCP visit. With that being said, it was far from a waste of time.

The physical therapist suggested that we take an x-ray of Maddie’s hips. Something that was never mentioned to us before. She stated she liked to get these images in children who do not walk by two years old. This is to make sure there are no defects in the femur and/or hips. We were able to get those x-rays on the same day of the appointment.

Another suggestion that we got was to switch Maddie’s anti seizure medication from Keppra to Onfi. According to the neurologist Angelman Syndrome individuals seem to respond better to Onfi. Now this is just a suggestion. If you’re a friend of mine on FaceBook, Maddie recently celebrated one year seizure free. Her Keppra is working. This suggestion is for down the road, if Maddie’s seizures start to spiral out of control. I’m a huge believer of if it’s not broke, don’t fix it.

Seeing the speech therapist was a revelation. When we got Maddie’s AAC device, which is an iPad, we were told to use hand over hand to guide Maddie to certain items or phrases. It turns out, this was a completely wrong practice. Maddie needs room to explore and grow. The speech therapist that we saw, suggested we use our hand as a platform for her wrist, and let her explore on her own. This suggestion was implemented immediately.

Now there were other suggestions that were up in the air pending lab results. We’re waiting on the final report from the Angelman Syndrome clinic. It will be available to us online as soon as they finish up their notes.

While in my mind, I thought this trip would be the be all end all, it’s actually the beginning of a journey. Now we have a team of experts who will be guiding our team here in West Michigan. As the team in Colorado gets to learn and grow with Maddie, they will be able to get more specific in their recommendations. We’ll be back to Denver in August, and I cannot wait to see how this partnership grows.

-Written by Adam Birchmeier