2013 Metabolic All Star Team

WARNING: BORING MEDICAL POST

Thanks to modern technology, especially something called a google ...
Thanks to social networking...
Thanks to creative health care practices...
And thanks to frequent flier miles and Marriott points...

We have assembled the 2013 National Metabolic all star team. 

Director of personnel is mom. There is no one who can compile research data from a laptop faster than my mom. While it doesn't make you a household name like Joey Chesnut who can eat 69 hot dogs in 10 minutes, it sure comes in handy when you have a medical disorder that only a handful of doctors specialize in. 

Next in the chain of command and following all the daily ups and downs lately is Dr. Mike Whistler. He is here in Grand Junction and if it were not for him, mom would have moved us back to Indianapolis by now. He has been great with managing info from the various out of state specialists to make sure the overall plan works well. He would also be in charge of managing any future crises that would happen locally. 

New to the team is Dr. Brendan Lanpher at National Children's hospital in Washinton DC. He is one of few geneticists in the country who specializes in biochemical genetics specifically. He came highly recommended by a family who has a 3 year old with a similar metabolic disease. They have experienced with what can happen if a crisis is not handled properly and therefore they are very picky about who is in control. So if Dr. Lanpher can handle her case, he is more than qualified to handle mine.  

And last but not least, is Dr. Fran Kendall in Atlanta, Georgia. We hear she is the top dog in the area of metabolic and mitochondrial medicine. Mom was so excited we got accepted into her practice. She gives out of state patients the opportunity to do remote consults because she only serves as a second opinion. She will look at all of my tests, labs, and medical history and give the rest of the team any recommendations for further testing and ongoing management. She has patients from all over the world so she has seen just about everything. 

We now have all regions of the US involved in my care. If anything bad happens, mom says there is nothing more we could have done. Every stone has been turned and every player carefully selected. She does not get to this point in her research too often.  Total cost of my health care escapade...$0. Believe it or not, national children's is in network for our insurance. And with miles and points our only expense will be metro pass and food. Not bad.

I had gotten a few questions regarding the Washington DC trip so I thought I would explain our plan before we leave Monday. That way the next post can be fun DC pictures and not boring medical stuff.

I can't have a post without a picture. And I just couldn't top Drew mowing the lawn with a sombrero to keep the sun out of his eyes.

Cheers!

alexa

16 Months +10 days

The 16 month mark snuck up on us and we have been too busy with planned camping trips, visitors, and medical management to get organized enough to post. So its a little late but it still counts.

weight- 19.8# My metabolism continues to be slightly out of whack but my weight is heading back up again after losing almost 2 pounds. Good thing I had plenty of body fat to spare while my blood sugar figured out how to regulate itself better.

Here I am before my hospital stay at 21#

and here i am after at just over 19#

Teeth- too many to count. I have 4 molars in and just a couple gaps left for new teeth. 

Sleep- Mom says that somewhere out there is a newborn who sleeps worse than I do. We just haven't met them. She will no longer complain about waking up every 3 hours to bring me a bottle because its a whole lot better than my sleep habits the past couple weeks. I really do want to sleep longer, but I just get sooo hungry!

Words- I finally say mommy. Doggie is still my favorite but my vocabulary is increasing little by little. I'm not sure I ever really have more than 4 words in my revolving vocabulary at one time but at least I have variety. For example, I gained "go" but lost "uh-oh". Next month may include daddy  

New tricks- I am a really fast runner now. And my climbing skills are improving. I have the desire, just not quite the arm strength to get up on things. But by next month it will happen. Watch out table tops. Nothing is safe. 

Mood- This is a necessary category this month because it was the most affected by the low blood sugars that continued until a couple days ago. I had been an emotional wreck. One minute I was my normal happy self and the next minute I was sobbing or kicking on the floor or swiping at people. I'm not even sure I could remember why after about 10 seconds. To make it known that I was not happy, I worked on my "mean scrunchy face" to scare people. It's hard to catch on camera but mom got a half version when she announced it was time to get out of the tub. And she did look scared. Not quite as scared as the passengers joining me on our LAX-GJ flight 2 weeks ago but close.

As soon as we got back from California, Jude came to visit with his parents. Its the first time he has been to Colorado. We got along great and did some real fun things. We are hoping to get to hang out again in the fall. His mom is my GI specialist but she looks too young to be a doctor so I wasn't scared of her.

Jude helping me with the hard words

I slept in a shirt I borrowed from Jake Johnson. It wins the bedhead photo of the week contest for sure

This past weekend we camped at Mt. Evans. Dad was in a bike race where you start at the bottom of the mountain and ride up 27 miles to over 14,000 feet. Then the race is over and you coast back down on a torn up road. Doesn't that sound like a good time?  Our camping spot was half way up the mountain so we were able to just walk down the driveway and watch the riders go by. We have to change some sleeping arrangements in the RV before next weeks camping trip to Ridgway. Apparently mom wants more than 3.5 hours of sleep in a night. 

Dad going under the banner. You can also see the treeless ridge he is heading towards. Its at the very top of the picture. Pretty impressive.

I helped him train for the race by pacing his run through the neighborhood. Don't I look fast! Dad can hardly keep up.

And finally, the travel hiatus lasted about two weeks. After our Calif debacle, mom went on a mission to find a doctor who specializes in exactly the type of metabolic disorder that I have. So next Monday we are headed to Washington DC to meet him. He will be able to give us a lot of answers as to why things likely happened and how to prevent serious problems in the future. I'm not looking forward to the long plane ride, but I found a way to keep busy this weekend during the long RV ride. I bet it will help for future trips as well...

Now that's what I'm talking about.

Next post will be a  medical update when we return from DC. I may even have some cool pictures from our very brief trip there.

Cheers!

alexa

California 2013- High highs and Low lows

We try to get to California every year and 2013 was no exception. Last year we drove in the RV and had a great time.  Since dad and Hayley were in Peru on a medical mission trip and unable to make the trip, mom thought it would be best to fly this year to avoid the 806 miles in the car. Sounds relaxing, right? Just fly to LAX, spend a couple days visiting grandparents and the Lee Family, then drop Brandon off at tennis camp in Carmel, relax in northern california for 2 weeks and pick up Brandon on our way back to LAX. What could possibly go wrong with that plan? Um, maybe EVERYTHING!  

The first 72 hours started out just fine. But clearly grandma and grandpa didn't want us to leave. Grandpa tried to keep us there indefinitely by hiding our car keys in his pocket. He quietly did yard work as we tore apart the packed up car looking for them. Only after 40 minutes did mom realize he was the only other person present when they went missing. Under dad's watch , it would have been no big deal because he likes to leave early for everything. But mom likes to live on the edge where missing 2 stoplights instead of the usual 1 means we are going to be late. We got Brandon to camp with 8 minutes to spare but the only stopping we got to do was on the 101 in horrible Ventura county traffic. From that point on the entire trip was highs and lows. Here they are...

The High Highs

Grandma and Grandpa letting the trampoline live at their house

Spending time with the Lee family

The Lee's letting us relax at their Balboa Island house and my 1st ferry ride

Walking across the Golden Gate Bridge with my cousins

The Adventure Park in Berkeley aka- the junkyard playground

Berkeley kids museum

 The Low Lows

Driving, driving, and more driving. Mom should have had Drew take a picture of traffic because that would have been more appropriate for our week. We ended up deciding to go back to LA in the middle of our trip. Because we still needed to pick up Brandon from camp at the end of the two weeks, that put our total miles driven in So Cal at 1530! Not fun.

Oakland Children's Hospital with my first metabolic crisis

We could not be more thankful for the newborn screening program (some still call it a PKU test) that exists in every state.  Most of you know I have been followed by a metabolic doctor in Indianapolis since birth because the test done when I left the hospital showed that my body is missing an enzyme and cannot make sugar like its supposed to. At that time I had no symptoms but mom and dad were told that I can't go over 4 hrs without food and that under stress like an illness I am at high risk for my blood sugar to get too low. Its sorta the opposite of diabetes where they get diagnosed because their blood sugar is way too high. We don't know whether it was a virus or a combination of events that set off the metabolic crisis (mom said it definitely wasn't from sleeping more than 4 hours between feedings) but luckily we were staying in Berkeley which is 10 minutes from Oakland Children's hospital.  On a busy Sat night we got to cut in front of about 50 kids waiting in the ER and they started an IV as soon as we got there. Mom won't tell me why everyone was moving so fast and what could have happened but I think they were just practicing for when a real emergency comes in. As soon as the IV got my blood sugar back up, I started feeling better. We got to go home the next night and over the next 7 days I slowly got my muscle strength back. 

starting to feel better

Back to myself just a pound lighter

The good news is that mom, dad, and the doctors have a better idea of what my early symptoms are and we have a written plan so that every hospital will know what to do in case this happens again. And I will be able to help them out more when I can say something other than doggie and bye. 

We enjoyed our visit with family and friends but we are happy to be home. Mom says we aren't travelling out of state for a very long time. 

At the Goldstine BBQ in my 4th of july outfit so mom wouldn't get in trouble by miss Traci

Drew and I ready to watch fireworks in Thousand Oaks

Alcatraz Island view from a ferry

My cousin Pier and I on the couch that the boys made from scraps 

Drew and Drew building the couch from scrap wood and other things that float into the Bay

Hope y'all are enjoying your summer

Cheers!

alexa