WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Friday, August 10, 2012

Gold Star Appointment.

We are wiped out! Up at 4am and not home till after midnight.


Abby had a terrific appointment with her Mito Specialist Dr. Kendall. Abby's improvements were very obvious. So much so, Abby has been graduated from being seen every 6 months, to 1 time a year!

We talked a lot about what we were doing to make these big gains and improvements- and we again marveled at how unique Mito can be. Each patient has their own user manual, and parents are indeed the best ones to translate that into practice.

It is nice to know our thinking outside the box is working for now, and our chickpea Nofu kind of lifestyle has paid.


A very long day with flight cancelations, and little hiccups. but Abby still prefers the fly in and fly out same day approach- She was beyond weary by the time we got home and I suspect she will be in bed for the weekend,maybe a week!


Thankfully, we all kind of enjoy the people watching at the airport.


The only down to the day, was a screaming toddler on the airplane. Not sure if it is as obvious to every other parent out there, but I KNOW the difference between a "my ears hurt" or "I am scared" or "I am frustrated" type of scream.. This child was simply spoiled rotten and with a parent who let this child scream and cause a miserable flight for 160 of us.. It was so bad, that a couple of passengers actually started entertaining the child since the parent was planning to just let her scream for 2 hours.. I tried to rationalize that maybe she had a developmental issue, but I sure did not see it, or maybe her much older Mom was sick with something or maybe deaf and couldn't handle the child but hands down it was a rotten spoiled kid with a parent who did not seem to care if her child drove the rest of us batty- as I sat there with teeth gritted, turning the volume up on my music and still the child's screams echoed through my spinal nerves I tried to at least rationalize that she had quite a voice and perhaps all this screaming would lead her to become a world famous rock singer(think Joplin!)or that at least she had nice strong lungs.. nope- after 2 hours the entire flight was seething- it was so bad that a few passengers hollered " Oh thank goodness!" when we were finally able to get away from the child!


I have decided it is a very good thing I only have 2 children, and that apparently mine were extremely easy- because I have noted a serious uptick in screaming, running, and unruly children out there...

There were lots of terrific kids at the airport which gave me hope that not all children are monsters and I am not completely intolerant! :-) I think for the next flight I need to invest in a better headset, I wonder if there is anything better then noise canceling?

So, whatever we are doing to help Abby, we keep doing it, we all agree for now, it is clearly helping Abby heal/stabilize. It gave Abby such a thrill to walk into her appointment yesterday! :-) She cannot do the airport without a chair yet, but heck healthy folks get wiped out running the airport! Walking into the appointment clearly looking and feeling so much better then in February, gave us all a thrill! I think my goofy happy grin will get us through the next 10 flares because I know now that what we are doing is working. :-)

2 comments:

Reagan Leigh said...

We are going next Thursday for our first appt with Dr. Kendall (and suggestions for me?)!! We're going and coming back on the same day as well...hopefully we won't have any canceled flights because I really didn't want to have to bring more than the one day of medicine with us (which airline did you fly?). Funny you say that about the screaming kid (I would have been thinking the same thing...and probably would have been one of the people saying Thank God! out loud), but that's probably going to be us with Ryan! He's never been on a plane and he is already ROTTEN!!! Of course, the difference is, I would be horribly embarrassed and apologizing to everyone!!!

Circus of 6 said...

Oh I am SO happy for you!!! I fondly remember when the kids were stable enough to be on a one year check in schedule. I was kind of scared for the first few months because we were used to very frequent visits. I kept reminding myself that if something comes up, we can still take them for a visit.

Kudos to you and your family for your hard work and persistence!!! :)

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