I am...

overwhelmed, a bit exhausted...and struggling a bit mentally.  Adding three days of therapy a week to my schedule has been all of the above.  Not to mention, finally getting her dental appointment scheduled, which happens to be at Riley due to insurance/financial reasons.  She has also had an appointment for SMO's  to be worn in her shoes every day.  Adding stretches two to three times a day and just trying to find a new routine in keeping the house in order.  Which I haven't .  Have NOT.  I feel like I'm constantly behind and I am.  Then, going to therapy and being told how tight her muscles are and what is lacking.  It's brain over load.  It's heart hurting.  It's wondering, can these issues be corrected and what will happen if they can't.  Her feet cannot, we already know it will just lend support for her ankles and then just not listening the voice that tells me I've failed when I could have done better but I don't really know.  Her health has been so frail over the totality of her life and that has been the priority.  It's a lot.  Pushing aside the thought of all the exposure she is now getting with being around people.  

The RFB feedings are going well, she's only getting half a pouch once a day. Our DME provider doesn't carry them and the only place in Indiana that does is IU home care which we just quit three months ago and I have no intention of using them again. Irony, evil karma...kinda feels like the latter. It is difficult to push the feedings through the tube, like I know I'm building some muscles.  Just the thought of trying to undertake a blenderized diet on my own is daunting, but as we progress with giving her more, affordability of those pouches is just not in our budget and neither is a vitamix which is the blender we need, and I've contacted them regarding any programs they might have to help and I got a very vague email back stating a program was going to be available...but that was it. (wow that was a LONG run on sentence) Yesterday found me in tears as I blew out her feeding tube trying to push her RFB in, and trying to get her to swallow the food in her mouth and there are just things I can't physically make her do.  I was so discouraged and feeling like ALL these things we are putting her through are all for naught.

Many things to be in prayer for, mostly my sanity.  The Lord is my strength...and I know my feet would not hit the floor daily were it not for Him.

I am just continuing to thank God for the blessing He pours out on us.  He is good.  Our circumstances just aren't always.  Have a look at our beauty as she models a new dress she found today.  I was crying the other day and she came and put her arms around me the best she could and was just pouring out her comfort on me...precious...there are times she's so in tune to me and I realize the Lord is just reminding me of His goodness.  Be blessed.  Hug your babies...life is precious and precarious. Soak up their voices and their abilities...it's easy to take things for granted.