It's MRSA and they are cutting it out.....I think she may have a mild form of muscular dystrophy
After the doctor examines Ava and asks many questions, he says, 'I think she may have a mild form of muscular dystrophy." Not really sure what all he said after that. He said a lot, I asked questions, but my brain was still trying to wrap itself around what he had just said while I was hearing the rest of the explanation. I remember bits and pieces as I talk about it with family members, but just not sure.
These are the words that I heard/read with in an hour of each other.
John was out of town on business. He had a spot on his leg that was really hurting him that we thought was just an inflamed hair follicle. But with in 24 hours, he was running 101 fever, had chills and couldn't walk from the pain in his leg. So on my way to Ava's 3 year well check he texts me and says, "doc thinks its mersa, cutting it out." His phone was off, so that was all I knew. I am getting out of the car to take the kids in to the pediatrician for Ava's well check trying to figure out how I am going to get to Fredericksburg as my husband is probably being admitted to the hospital!
After the doctor examines Ava and asks many questions, he says, 'I think she may have a mild form of muscular dystrophy." Not really sure what all he said after that. He said a lot, I asked questions, but my brain was still trying to wrap itself around what he had just said while I was hearing the rest of the explanation. I remember bits and pieces as I talk about it with family members, but just not sure.
Go to the car in a slight fog. John calls and he is better. After they removed a boil half the size of his fist full of infection from his leg, he is feeling slightly better (that was before the pain of having a boil half the size of his fist cut out of his leg hit!). I share the news of Ava with him. At this point being brave isn't that hard because I'm not really even understanding what I am telling him.
Ava has been a special blessing in my life. All my children are wonderful, don't get my wrong! But Ava came unexpectedly right after we lost Addy and while we were waiting for the outcome of the visa for Eden. I did a 100 word testimony on her at Stonegate. Basically, little Ava was my promise and hope that life would go on despite all the heartache of the years preceding her birth in the area of children and parenting! She is my laid back child, my joy-filled child, my little girl who can re-energize me with a game of tickles when I have had an exhausting day!
To hear that she may have an illness that could shorten her life (he assured me it wouldn't, but all research on muscular dystrophy says otherwise, and he tends to NOT tell me things before a diagnosis as we have learned in a couple of other instances!) has taken me through every emotion known to woman!
Shock was first. It takes awhile for something like that to soak in. I really can't say that fear even surfaced until the next day. That first day was just shock. Trying to really understand what we might be dealing with considering the very little bit of information we had. But the next day, well, when I finally took a shower after noon, the tears started and just as I figured, once they started, I couldn't get them to stop! What do I KNOW? I KNOW:
- God is in control and this is no surprise to Him;
- Ava is fearfully and wonderfully made NO MATTER what the outcome of the test results are;
- I can do ALL things through Christ who gives me strength;
- watching my child struggle will be hard;
- knowing my child has an illness that might cause her difficulty and keep her from doing everything she might ever want to do makes my heart hurt;
- there will be days when a diagnosis will not matter and there will be days when a bad diagnosis will seem like the end of the world;
- God will never leave me nor forsake me as I walk this journey;
- Someone else giving me these churchy answers who has never walked this path on a bad day will make me really angry (right or wrong, that is a fact!);
- parents have received much worse news than that their child might have a muscular issue.
- God loves her more than I EVER could and will use whatever the outcome is for His glory
- I have friends like Lacy who deal with special needs children every day and have made me aware of the precious children behind those words, "special needs". Lacy, I have thought a lot about you the last two days! You are my hero! Little Miss Autumn is just too precious!
The blood tests have been ordered and will be drawn tomorrow. They will be sent to Mayo Clinic and we will wait. I have always said in major life issues that the unknown is the hardest thing. I'm not so sure that is true this time. As long as I don't know, there is still hope that all the little indicators that makes the doctor think we might have a problem are just coincidence. So not knowing just might be ok this time!
If you think of it, will you say a prayer for my sweet girl that all is normal....well at least as normal as any Petree can be?! Thanks!
3 comments:
wow. that is a lot to take in.
I wish I had words to say.
I am at a loss. When it comes to our kids... there is nothing we can do to prepare for something like this....
we will pray for Ava. and for you and John.
We will pray for her. We have a special needs daughter as you know and understand the struggles and uncertainty. I also know God is bigger than all that and can pull you all through anything.
John
I am so sorry! Praying that all will be and that God will heal her. I am truly in shock, praying for all positive results on the lab work!!!
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