Yesterday was a big day for us. Corey didn’t have to work (any extra day he’s home is always BIG for us Stone Girls), we registered Bethany for Kindergarten (BIG breath!) and Corey, Audrey and I drove to Children’s Hospital once again (HUGE BIG BREATH and a Sigh!).
We have spent the past month wondering. There have been ultrasounds, blood tests and weeks spent wondering what they were going to say. We’ve watched our girl ebb and flow, seen her have some really good days (!) and some really tough ones. I’ve spent hours on my knees, begging for answers, for clarity, for peace. All of the everything packed into this past month for Audrey boiled down to yesterday, there was good and there was not so good, but there was nothing horrible. Here’s where we are:
- Renal Ultrasound - The ultrasound of Audrey’s kidneys that we had last week came back totally normal! There is no residual damage to her kidneys from the multiple infections nor are there any glaring abnormalities causing the problem.
- Blood Work - Audrey’s hemoglobin, which has been consistently on the low side, dipping down to dangerously low when she’s sick was up a little. It was only a teeny bit higher than it was when they released her from the hospital in November, but it’s eked over into normal. Not by much, but at least it’s not under it. GREAT NEWS is that when they looked at these cells they ruled out some very, VERY scary blood diseases that everyone was concerned she had.
- Her baby red blood cells are still low. While they too are touching the edge of normal, they are very low. When a person’s body has a low hemoglobin their baby red blood cells should be higher trying to increase her hemoglobin, not lower. They can’t understand why her’s aren’t elevated.
- Her over all blood volume is low, something that is concerning. Again they can’t understand why it’s still not where it should be. All of her nutrition tests show that she has everything necessary in her body/diet to help facilitate a good blood volume, and yet it’s not happening.
- All her liver, thyroid and kidney function tests came back positive as well!
- Stomach Pain - Audrey has complained of an “owie tummy” for a long time and this month was no different. She’s still complains multiple times a day, I still find her curled up on the floor and that worries all of us. They did an abdominal xray yesterday because they both felt a mass in her stomach that they want to identify. They want to rule out constipation (which I can rule out because this little missus poops 3 LARGE amounts a day, there’s nothing in there.) and to see what it is. From what we understood they aren’t thinking it’s anything scary, but we need to know what it is.
- Hair Loss - Over the past month Corey and I have once again noticed that she’s losing more hair than normal. While this time she doesn’t have the bald spots (yay!) it’s more than a normal person loses at a time and that’s another concern. Both times it seems she has these losses after she’s been sick.
- Urine - Audrey keeps getting really bizarre smelling pee. I know that sounds silly, but it’s not associated to any one food and it comes at random times. It’s sweet, but not like maple syrup (maple syrup smelling pee is a big indicator of diabetes) and it doesn’t add up.
- Fatigue -While Audrey wasn’t as pale this month, she is still fatiguing really bad. More than what I would chalk up to normal kid tiring. A big even, like snow shoeing (which she only walked for a total of maybe 15 minutes, I carried her the rest of the hour) left her exhausted for 2 days. She was ashen and exhausted during and after, and even with added daytime naps, she was really worn out.
The doctor’s spent 15 minutes in their own office debating what to do from here. Each of the things that remain make up a “muddy water puzzle” for them. If a normally healthy kid had any one of those symptoms, they wouldn’t worry too much and would attribute it to a phase. But because of what Audrey has been through over the past year, and the fact that they are all together it leaves them concerned that there is something more going on.
After a lot of talking, both on their own and with us we decided to give it another month. They did urine tests and the xray yesterday, now we wait. We need to observe her for a month, see if any of this improves, if it’s just taking it’s time or if we need to dig further. None of us want to put this little girl through any more than she’s already been through if we don’t NEED to.
That being said, we have to be sensitive to what’s going on. If we’re concerned, if something strange happens or a really rough day happens they want us to call right away to get in early. They want to be able to run some of these tests in the middle of whatever we’re seeing to see if it can get caught. The biggest concern from all our doctors is that these little things are signs that there is something bigger under the surface, developing and we don’t want to miss it.
Yesterday was good, while we didn’t get all the answers we wanted, we did get some. We received good news in with the not great news, and the sun was shining! Bethany was excellent for Grammy while we were gone and came home full of hugs and early Valentine’s Presents.
Thank you for loving us through this. We are so grateful to God for His continued faithfulness in whatever situation we face and for our friends who’ve held us up with prayers, love and support.
Please keep praying for answers, for clarity, that we can catch whatever it is I KNOW is happening in her body, for Bethany that she feel loved, special and cherish (being the big sister is a hard job), for Corey that he know that God is always there for him and for me that I can find rest. This road has been long and it looks like it’s going to be a little longer, and we need all the prayers we can get right now!
Thank you again and Happy Valentine’s Day!
