17 months

Another summer vacation gone. I don't even go to school and I think they go by too fast. We finished the summer the same way it started, with lots of quick trips. In the past month we have been to Ridgway, Washington DC, Denver and Golden. Now that school is back in that will slow down. We have some weekend camping trips planned but that's about it. Before I post pictures of my trips, here are my current stats

Weight-  20.8#- got all my weight back
Height- DC says 27.25" but mom says I'm taller. Hope she is right. 
Words- about 7
New skills- climbing out of high chair. Now I have a seatbelt for it

We had a quick camping trip to Ridgway where I got to enjoy my first boating adventure. Not sure I agree with all the rules of the boat though. First I had to get used to my life jacket set up. As soon as we got to the lake, the first thing I did was walk straight into the water. Before I knew it I was on my stomach with my head out of the water like a turtle. Floaty works! Stearns know how to make em. So I was ready for the boat.

Checking out the water we will be tubing in

Loading up the tubes

I'm sure I will get on soon

Hmm. Starting to take off and I am on Wendy's lap. Not quite the high stakes adrenaline rush I expected when everyone was talking about tubing and wakeboarding.

At least Dennis felt sorry for my "left out" status and let me drive the boat. Not the worst consolation prize but they better let me wakeboard next time. The adults were probably just afraid I would get up before them and make them look bad.

The day after we got back from Ridgway, we flew to Washington DC. We were there the last week of July which would normally mean weather that is unbearably hot and humid but it was beautiful. What a great city. 

mom has a thing for public transportation. I kinda dig it too. Someday I will be big enough to see more than just legs.

Lay flat seating...must be in first class

Repairing the earthquake damage to the Washington Monument 

General Sherman statue 2013

General Sherman statue 2012

White House 2013

White House 2012

riding the suitcase at the children's hospital

The purpose of the fun trip to DC was to get more information on my metabolic issues. After lots of tests they ruled out some scarier defects and confirmed my initial diagnosis of primary carnitine deficiency.  Great news given some of the alternatives. 

Wandering around at the summer concert series. Not sure if it will load but mom has video of my dancing

Mom says sitting in a cute car at a real haircut place is over rated. The bathroom sink with her holding the scissors is about the same, right??? I have no comment for this one. 

The next trip was to Denver to get Hayley and Cassie new pointe shoes. Same process as ski boot fitting. Not a quick process. At least we got to go to Dave and Busters and Jumpstreet after they were done.

The virtual roller coaster at Dave and Busters in Denver. At 27 inches, I'm halfway to being tall enough to ride the real coasters

More Dave and Busters fun

The last trip of the summer was  to Golden, Colorado. I wasn't invited but mom said I should include it anyway. Michael is starting his freshman year at School of Mines, an engineering school.

Michael and Carl at move in day to the dorm. Mom said she doesn't feel old enough to have a college student. She will eat those words in 17 years when its my turn. 

So that's what I have been up to lately. Time to get ready to watch the US Pro Cycling challenge in Aspen today.  Maybe I can get another picture with Bob Roll or one of his friends,  Phil Liggett or Paul Sherwen.

Cheers!

alexa

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

15 Months and Pictures!

The months are flying by now. Here are my 15 month stats

20.5#
27.25" (when you are below the 1% you count every quarter inch)
teeth- 10 plus 2 more molars coming in
word count- 5. My new words are uh-oh and dah-Gee (doggy with a hard G sound). I also make a great bark sound.
motor skills- running everywhere and starting to jump and stomp
food- Still love it all. Current favorites are blueberries, pears, mango, strawberries, and the quinoa/spinach/pecan/avocado mixture mom and I eat every day for lunch
fav toys- dogs and buckets or purses to put all my favorite rocks in. When I can't find one, I use mom's shoes instead. Rocks fit well in them.
sleeping habits- Mom looks like a zombie because I wake up every 2-3 hours again. When will she learn and give me back my neocate

And I finally have all the pictures from the three cameras. We will start with the Qualls annual crawfish bowl that happened in May and continue to the present.

Creepy little guys. Yes, I am wearing the same 3 month outfit Ms. Traci got for me last year. The new one should be a great fit next year.

Really, I prefer dogs to crawfish

Michael's graduation that I wasn't invited to

But I got a picture and didn't have to sit in through the hot ceremony. Score!

Lots of park days now. Mom rides me up every night and dad joins when he's home

This is my ride. Appropriately called the charriot

Ready to go with mom

Dad drove me once last week. Notice the bottle rack of the bike. In case Ms. Traci showed up at the park he was ready for happy hour

Even Hayley can't turn down the opportunity to hang with me

Just in case you wondered if I could wink

don't I look fast!

mom's favorite park picture to date

The serious look

And my fav... the doggie pictures. I love Sparky

Seeing if she would invite me in

Not sure why she looks scared to see me

Maybe the boys want to play with me

These boys surely do

Or maybe I just need my blankie

So glad mom finally got her act together and got the pictures in order. I was a  little later than I had hoped with this post but hey, life happens. In California now. I hear we may get to see Alcatraz. How cool is that? My 7 year old cousin wants to see real people in the jail. Are you kidding me? I think the historic, old, empty jail sounds perfect.

Hope you are enjoying your first two real days of summer

Cheers!

alexa