Christmas is over

Now that Christmas is over, we are so ready for Summer!!


Dakota and Christian are loving their Christmas break, playing video games all day.  They are both doing great!  They keep me grounded when I need to be. 🙂

Ava is doing ok.  We’re battling hypoglycemia and energy problems lately.  She’s going to start going to  the Neurometabolic clinic.  I’m hopeful that they will have some answers.  Some of her symptoms are not usually seen with the mitochondrial disease she has.  They are thinking she may have another Mito disease called MNGIE.  She’s having another MRI of her brain on the 11th of January.  She’s also having some increased seizures and will be getting a 3-5 day VEEG.  She’s always had constant retching, but we’ve been venting her Gtube with a Farrell bag.  She remains on 24/7 Jtube feeding to maintain blood sugar levels.  She takes zofran daily, which is a godsend! 🙂

You can tell from her picture that she really has happy days, goofy days!!

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