Still here

Nothing like a little delay but I'm back. I would love to tell you the hiatus was because there were so many Costa Rica pics, I couldn't decide which ones to use. But its not hard to choose from the measly 10 that were taken.  Beach vacation pictures really are a challenge. We were either at the pool (water in mom's camera=bad), at the beach (sand in mom's camera=bad), or I was napping. But I have a few.

Once we finally got there, the trip was great and no one was sick. We traveled with every IV fluid and medication I could possibly need if I got sick in a developing country and we never even had to open that suitcase. Our condo was right on the beach in a small town called Tamarindo. We shared the place with with our good friends who also have babies so it worked out great. Its hard to believe Drew and Brandon didn't want to come with us. Apparently their friends at home are more fun. Here are some pics.

The town of Tamarindo

The view from our balcony

Dining on the sand. Great because I don't sit still too well at traditional restaurants

My twin roommates ganging up on me to steal my pacifier

We spent most of our time at the beach or at the pool. While the weather in Colorado was -19 with the windchill, we enjoyed 90 degrees every day. I loved learning how to swim with water wings on. I'm a very good jumper too.

Who dressed me in the wrong clothes?...panic!

Much more appropriate attire for shell hunting

Working on my kicking

The pool was next to the sand which gave me lots of options

One of the reasons we chose Costa Rica was because of the diversity of the land. We took a day trip to the national park which is a dense forest with monkeys and other wildlife. It was only about 30 miles away but took all day to get there and back because the roads are not paved or well marked with signs. So it was quite the adventure between the dads using their spanish to get directions and finding out when we got there that a 12 passenger van is not exactly a high clearance vehicle. But we made it halfway into the park before the van met its match. And we found monkeys so it was worth the trouble. 

The monkeys!

The van. With that kind of clearance it was shocking we didn't make it all the way through

The group "selfie" taken the old fashioned way- camera on a rock w self timer

This wildlife was actually at the condo pool!!

The sunsets never got old

MUST.GO.BACK

The next post will get me caught up. Hopefully tomorrow or Weds.

Cheers,

alexa

Costa Rica Days 1-3

Planes, Trains Cabs, and Automobiles

*Our travel plans were to take American Airlines from GJ-Dallas-CR. Simple

Here is the summary of the first two days of our journey to Costa Rica

FRIDAY

• epic ice storm in Dallas
• cancelled, reinstated, cancelled again flight from GJ to Dallas
• reroute on US Air to Phoenix
• Land in Dallas very late on the only runway in use

if a plane veered off, it wouldn't stop sliding anytime soon

• No cabs or hotel shuttles running bc of 4-6" layer of ice on all roads

view from our hotel window

• consider getting one of the red cross cots and joining the 4000 other stranded passengers sleeping in DFW that night
• rent a car to get to a hotel 2 miles away

SATURDAY

• wake up to catch flt to CR and dad has the stomach flu as hundreds of flights are being cancelled...but not ours. Late getting there bc of roads, rental car center and vomiting and of course our flt leaves early...without us. We rebook for Sunday am in hopes weather and dad are better.
• 10am- stomach flu hits mom. It was so bad she had to use the airport bathroom. Thank goodness we didn't get on that flight
• 11am- check into airport hyatt. mom is very sick. 
• 2pm- notified that sunday flt to CR cancelled. 
• 4pm- Check out of hotel 4 hrs after checking in and take cab and ice slide our way to Love Field airport
• 6pm- Buy 2 tickets on Southwest airlines to Houston
• 9pm- rent another car to get from Hobby airport to Bush int'l airport. 
• 10pm- Check into our second hotel in less than 11 hours. 

SUNDAY

• 9am- Mom is feeling better and we are on our 3rd airline that is NOT American airlines
• 12:30- We are finally in warm, sunny, Costa Rica and no one is sick!

The entire stay in CR and the flight home was fantastic and without incident. Part 2 will include a couple pictures. We were in the water so much we hardly took any. 

20 months, Holidays, and Dallas Part 2

...You read that right. I sleep longer than 2 hours at a time now. We have discovered the miracle of cornstarch.  Plain old cornstarch from the baking aisle of the grocery store.  

Because my blood sugar cannot stay stable for long periods of time, kids with my disorder are given cornstarch at night. It takes longer for the body to metabolize cornstarch so adding it to my bottle means I am now sleeping 4-5 hours after the formula/cornstarch bottle. Before I was only making it 2-3 hours. Mom looks much more well rested now.

My 20 month stats:

Wt- 22.5#
Ht- 30.5"
Words- go, No!, hi, bye, "ruff", "meow"- for the cat and the cow. I will repeat "mom" and "da" and a few other words. 

My classic move now is the Flop. Yes, without even watching a single basketball game, I have a flop that is so perfect, I am the envy of NBA players everywhere. If I feel I'm being ignored, when you finally turn around to look at me, I can fall back to the ground while getting both arms into the air and yell "ouch" , all while giving a look of "what was that for?"  It happens fast and unexpectedly so mom has not been able to get video yet. It would go viral for sure. 

My hair is getting long. I have 2 ponytails in this pic

I am strong enough to start carrying our ferret around. Mom keeps a close eye on the situation so that PETA doesn't show up at our house. 

My favorite activity is still running outside. Thankfully its still warm enough on most days. But winter is around the corner and soon I will be hitting the magic carpet on the ski slopes again. 

Michael will be here for Thanksgiving as we lay low and eat all our favorite foods. Instead of a trad'l meal, mom has everyone put their requests in and she makes it all. Its an international, mostly carb fest of hodge podge items but it means everyone gets to eat their fav.

In two weeks I will be in Costa Rica with my friends from the Halloween pic. All four of us flying together... G_d help the other passengers. They won't even know what hit 'em. Or what they did in life to deserve that flight. Good thing the FAA has approved the use of small electronics for all phases of the flights now. We will just hope our neighbors invested in noise canceling headphones. 

Great pictures to come. 

Happy Thanksgiving.

alexa

20 months, Dallas, and Holidays part 1

Clearly my schedule must be packed because I can never find the time to sit down and write. Or maybe I just can't sit down because I'm a toddler on the move. Either way I will just apologize and move on.

So it seems like months ago but soon after my last post was Halloween. Dad actually participated in choosing a costume. Because he is a realist, he thought it was doubtful I would wear the hat so we chose a costume that would be recognizable without a head. That eliminated all 4 legged creatures (minus the zebra) so we went with the spider. And I even wore the antennas! We had some of my friends over for pizza and then headed out for my first real trick or treating. I love candy and I love running so it makes for a great night.

Hayley helped do the pumpkin...but I did the hard stuff (like sitting still with it)

4 cool girls born within 11 months

Right after Halloween we had our first visit to see Michael at his college. He is having a great time although I'm sure he misses me all the time.

Not sure why Gumby was visiting the Fiji fraternity house 

I was helping B and D down the stairs

The Campus

Clubs at engineering colleges build cars in their free time

Two days after we visited Michael, it was time to head to Dallas for Brandon's big surgery. Mom said my only job was to NOT get sick. Because the craniofacial specialist and the metabolism specialist work out of different children's hospitals, Brandon and I would have been in two different places. Mom says she would have quit at that point and just flown home without us. Good thing I followed directions and stayed healthy and happy at RMH (Ronald McDonald house) with aunt Angie. Brandon's surgery went very well and we got to go home two days early.

Giving the thumbs up from the PICU

We were able to get a room at the RMH which could not have been a nicer facility for me and for Brandon when he got out of the hospital. There were indoor and outdoor play areas, meals served by local organizations every day, and lots of kids for me to play with. It is an amazing charity, and if you are ever looking for a place to donate your money or time, I highly suggest looking into your local RMH. 

Playing with my friends at breakfast

And in the indoor playroom

The outside play area

Angie driving me around the playground

In the teen room after Brandon got discharged

The volunteer crew who brought one of the dinners

That crew made sure B was well taken care of

And just like that we were ready to head home. Brandon will be in the halo for 2 months and then they will head back to Dallas to have it removed. I am not invited on this quick trip.

This post is getting long and I don't know if Blogger has a limit so I will continue with a new post for my big news....

I sleep now!

Cheers

alexa

Dallas Texas, here I come!

Just a few more bad nights was all it took. I am now Texas bound with mommy and Brandon in 10 days. Not sure if they have shared the good news with Aunt Angie who will probably get to feed me all night while mom is in the hospital with Brandon.

We have lots of help while we are staying in Dallas. Aunt Angie will be there the whole time and Tanya and Lara, who both live there, will help with things during the day. With any luck a room will be available at the Ronald McDonald house so I will have an indoor and outdoor play area.

Mom has made it clear that I am only allowed to go on this trip if I promise not to get sick like our last vacation. The hospital Brandon will be at does not have a metabolic department so if I get sick, I will be at a different hospital.  Can you even imagine what that would look like?

Cheers

alexa

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