Some days...

Some days are easier than others... but right now.... God is surrounding me and I have so much peace. we have so many things changing or in transition for us... my chain should be rattled! It's amazing to me how God directs your steps!

We have been in the midst of changing our care to closer to home for the kids. In changing, it comes that breath holding moment of wondering how its going to go, will we like the doctors, will they understand every thing... we sat with our family doctor awhile back and told him the writing on the walls with our wonderful medicaid was warning us this was coming. He gave us advice and well, we are walking it out now and finding wonderful blessings along the way!

The doctors that we are meeting are not only knowledgable but so great with our kids and our family as a whole! We are so thankful for the transition to be going so well.

In doing all this, they have given the kids the "clinical" diagnosis of mitochondrial disease. This is hard for us as parents to accept. But their concern is the drastic ups and downs that come in their health. some times, the changes are daily and some times the changes happen over periods of time. This is a diagnosis that as been on them, off them, on them... off them... But Cinci doctors were coming to the place of "Treating them as mito patients" because that is what they were typical of in their medical behavior. In talking with our nuerologist, she sat us down and we went over symptoms, treatments, reactions with a fine tooth comb. She explained mysteries to us... things we thought were just us being nervous were considered autonomic defficiencies. Things we thought were something were just things that "happen." It felt good to have some one take time and help us know what to worry about and what not to worry about!

She has stated that she is agressive in treating but that she's approachable. If something does NOT work, we trash it, if it works for one kid and not the other... we work with that. It's so GREAT they aren't putting the kids in these boxes and saying "Here's what you do" because our kids have simlarities in their symptoms but are also on total opposite ends of the spectrum in many ways. Which is another typical issue of mito.

So, this is the journey and where we are. we are putting ourselves out there and trusting God. If you are interested in understanding what the kids issues are, you can visit www.mitoaction.org this is a wonderful site to explain really what our kids go through. Some days are great, some not so great and some just in between!