Friday, January 11, 2019

Her heart, her feet, her teeth---OH MY

Lillian had her biyearly cardiology visit.  All was well.  He said it will be a few more years before we can spread out her appointments even further, but for now biyearly will be the visits for now just to make sure her scar tissue is growing with her body.  He did tell me her PFO (hole in the heart) is flappy but he doesn't see blood flow through it, so they consider it closed.  Her blood pressure, this time, was considerable high...she is always anxious, so that concerned me because we've never had a high reading and she's always highly anxious.  The doctor did not seem concerned.  Good visit all in all.

Lillian got new braces for her feet because she is growing so well.  Still not on a chart, but her feet are definitely growing bigger than we can seem to keep up with those afo's. She was fitted for them at least 6 weeks ago and we just picked them up.  They are custom made for her feet, I guess that's why it took so long even though it usually only takes a couple weeks.  We also have a new person in that office taking over her care.  She's super nice.  I do miss our previous guy.  She was asking me questions that I just can't remember the answers to, and I'm like can't you look into her chart for notes?I mean my goodness...I do remember a LOT in regard to her care, but that kind of stuff just doesn't always stay with me.  I'm telling you, we have to jump through a whole lot of hoops to get these things new more than yearly and she we do everything they ask and then they ask me to bring her in with them so they can have a picture as proof for the insurance even though her doctor has written a note indicating why she needs new ones.  Super frustrating.

We had another visit for a teeth cleaning and this time she did super amazing.  The hygienist says to me, what's she drinking?  I say, 1 mountain dew a day.  If she drinks anything else, it's a tiny bit of milk.  She then says, well I can see we aren't going to get rid of drinking  mt no, no we're not.  I actually heard another one of them tell a child not to drink fruit juice. Not don't drink much, just flat out don't drink anything but water because every thing else is bad for you. Come on...I mean really.  Just come on.  I am doubtful that all those people only drink water all day every day.  Aside from that, hello, we are the parent.  ACK, I'm not even going to keep on going.  I just find it aggravating.  My child is very well cared for.  Her mouth has been through so much trauma, none of which we've had control of.  My daughter has so little choice in the realm of her life, if she watns a mt dew every day, she'll get to have one and as my mom would say period dot end.

She is remaining healthy which is awesome.  We've resumed schooling here in the home since Christmas break and she is less than thrilled.  Such is life...tee hee.  She knows she can't get out of it so instead she just refuses to engage.  Today was better than yesterday, we'll just add a little more each day to get back up to speed.

We see her pediatrician for her 12 year check up here at the end of the month and I'm going to share her weight and height changes since switching her to real food in her gtube.  It is AMAZING!!  I still pray and hope she will eventually take to swallowing food.  I get discouraged sometimes but then I look back on things that have happened that I never thought would and remember that God knows my desires and hears my prayers.  So, until next time, be blessed and thanks for taking the time to read about our girl.