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
No comments:
Post a Comment