Pics and Medical News

This month has been all about tying up medical loose ends for Brandon and I. Brandon announced in August that he was ready to have his final major cleft palate surgery. After lots of planning and discussions with the surgeon, they will travel to Dallas two weeks from Tuesday. Notice I said "they", not "we". Apparently they don't think I will be a big helper as I untangle cords and assist with button controls on the Peds ICU monitors. So I will hold down the fort here with daddy for those 8 days. We are having a test run of my night time eating routine on Friday night. If it does not work out, I may have a plane ticket to Dallas! Apparently not everyone is cool with my need to eat every 2-3 hours. Mom says she would love to train me like the scientists train the mice. I would push a lever and a bottle would appear. Brandon will be in the hospital about a week. Although if anyone knows my mom and her history with in patient stays, it will be more like 48 hours. He will come home with a halo that will pull his jaw forward over several weeks. Then they will fly back to Dallas for another surgery to remove the halo. Here is a before, during, after progression of the surgery. It is done all over the country but the surgeon in Dallas has been doing them the longest so he won the job.

I have continued my healthy run. We have now completed all our metabolic consults and have gotten more answers and a solid treatment plan if I ever have another episode like I did in California. We were given more options to test for a definite diagnosis but we are going to hold off for now. Metabolic and mitochondrial medicine is one of the faster growing areas of medicine and the testing is getting more detailed and less invasive all the time. In my case, the treatment is the same regardless of the specific metabolic disorder so there is no hurry.  My medication levels are all stable so we have not had to make any changes for a while. This week I had the first set of normal labs since my June episode so it will be a while before we change anything and we are all ok with that. 

Quick 19 month stats:

Ht- 30"

Wt- 22#

words- still pretty much 4... hi, bye, no, and a sporadic mommy although for some reason I now sound like I have a whole pack of big league chew in my mouth so words are marginally recognizable

new activity- group playtime at the gymnastics place (mom says calling it gymnastics class is way too much of an overstatement) 

fav foods- I still love everything except papaya and salmon. I even love broccoli and brussel sprouts

sleep- don't ask. Makes mom cry which makes her dark circled, puffy eyes even harder to conceal with make up. Its not pretty

Here are some recent pics:

helping dad in the garden

waiting for the haystack slide

my turn

searching for the best pumpkin

The usual suspects minus Blake

The hay maze. The corn version was too scary

The bouncy pillow

This Way

hanging with Matt

Yum!

Cheers!

alexa

You mean I'm NOT an only child?

For 17 months the universe revolved around me. And why not. I'm cute and have a great personality, right?

I know I'm not an only child but I have two uncles who told me the youngest sibling can expect the same perks. Well, I'm not feeling it right now! I cannot type yet so I rely on mom to be my transcriptionist. But lately she is not available. Her elbow is better and all of a sudden Brandon is monopolizing her time on the tennis courts.  Back in the good ol' days, during naptime she would do things like wash my clothes, look for lost sippy cups, organize pictures, and update my blog. Now she fills up HER sippy cup, makes sure HER tennis clothes are clean, and decides when tomorrows naptime will be based on what time courts are available.  Her friend Kim has been a bad influence on her. I'm sure Kim's tennis obsession started in much the same way.  I'm tempted to take out another elbow or something. 

Where I sit when I'm allowed to come

Things have been really mellow around here and that's a good thing. We have not travelled at all besides quick camping trips. Fall is coming which means lazy days of football Sundays. Maybe that's why the blog is harder to update. We haven't done anything that is news worthy. 

I am now 18 months old. Here are some of my latest stats

Height- 29.5"  I may have finally made it onto the growth chart. 
Weight- 21.5 #
Words- mostly 1 that they can understand. I had "doggie" and "ok" but they are gone again. Now I say "mommy..." and then goes on to make phrases that no one is able to decipher. Mom says I sound like the teacher on the peanuts and sometimes they can sorta make it out like scooby doo's speech. But I know everything people are saying to me and I can sign when I want things so its all good.
Sleep- Mom says I still do well as long as the comparison is to a newborn and not an 18 month old. I wake up every 2-4 hours and there is no indication that this will end anytime soon. Its possible that the geneticist we talk to tomorrow will have some ideas. Mom is hoping.
Favorites- Gray blankie, paci, stroller rides to the park,  "babies" book from the 1960's, "little blue truck" book, Dora and Blue's Clues videos, running in the greenbelt
Medical Stuff- Doing a great job of staying out of trouble. Appointment with genetics expert tomorrow but we expecting just a confirmation of what we already know. We had a little scare when I got a hold of (and ate) raw chicken that was used as a demo for a Norwex party but I wasn't affected at all. My new nickname is honey badger. If you aren't familiar with how bad a**  a honey badger is, check out the you tube video. Hilarious. 

and finally pictures from the past month

stealing mom's le croix when we were camping

helping dad drive

Oh wait, this car doesn't have a stick shift

running home with my new long legs. Look how short my 3-6 mo dress looks

chillin' in the high chair

Sharing legos and an orange with Mr. Dave

 Sitting with me is better than with the boring adults

same bathtub set up

showing Mr. Jon the way at the bike race

and girls like to check out flowers

brushing Hayley's hair. I'm very good

Mom said she will take some pictures with the good camera and post them...just as soon as she gets off the tennis court. 

Cheers

Alexa

New post coming, I promise

To keep you busy while I finish writing the next post, I thought I would send you the link to pictures I had taken last month. If you scroll down the albums its on the right hand side and titled "baby Alexa". Its password protected. Enter "pigtails" in the blank and the whole album will come up. The link will be up until Sept 30.

Updating the blog this weekend. It won't stop raining so that helps keep me at the computer

Tracy

http://www.catmayer.com/proofing/

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