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

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