Well, we are headed for Cincinnati today! The kids are both being seen in the wheel chair clinic. This is not an appointment either of us are excited about. We have found that when we go places that require a lot of walking or standing, the kids have energy crashes for 2-3 days straight where they are tired, they hurt or just don't want to move at all. So... we talked with Genetics and they felt it necessary to refit the kids for the wheel chairs we have that we got when we were at Riley. This is hard for us to swallow... feels kind of like we are going backwards. We have taken some steps backwards in some areas.
Jeff and I are really struggling this time. Lots of tears, lots of pleas that God would turn this around. Having had a good year and truly believing that every thing was fine now... it makes it harder on us as parents to cope with where we are. I find myself very broken inside right now. I know that God is COMPLETELY IN charge... I know that He's more than capable to change the out come of whatever the diagnosis is going to be... but getting that from my head to my heart is a real struggle at times.
We have great days where we know that we know that this is nothing in the face of God... then we have days like today where we just want to sit and cry and ask why. I don't know why... but I do know that God made my babies perfectly in his eyes! He knew there every moment before they were born so we will move forward and trust and then allow God to hold us and carry us when the strength is not there....
Joey also sees pulmonary today. We are probably going to ask if they will see Abby. Her allergies are just getting the best of her. She's back on eye drops because she's getting rashes around her eyes from itching so much. So... I'm going to try to get her in there. They have done so well with getting every thing from Joey under control. so... we'll see what happens!
Also, the kids have started on some suppliments. We are torn how we feel... we are starting to see positive changes. Our reason for being torn in our feelings is that these meds are often found to be a positive affect in mitochondrial disease. So... it's hard for us with not knowing what we have but seeing the positive out come. We are relieved though for something that is helping. I'm starting to see them rest better, I'm starting to see them complain of the pain a bit less... and having a bit more endurance. Small steps in each of those areas but they are steps in the right direction.
Thank you all for your prayers. We will know probably by the 30Th at the very latest what our diagnosis is. It is just that... a diagnosis... not a life description... So... we'll see what they have to say. Hugs to all! ~Mindy
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