Sunday, March 17, 2013

The next step!

Leah is doing really well, she is back to herself. She struggled with pain for about four days after surgery, she also had many many seizures daily for about four days. It seems that's how her body is when it experiences changes until it adjusts back to normal.

This is her G-tube. I think it's a lot more comfortable than the NG-tube. Her therapists say that Leah has recovered remarkably well compared to other kids with G-tubes. I know it's because of all the prayers. Thank you again to everyone who prayed for her that week of her surgery. That week went so well for her (besides the seizures).

The ultrasound of her kidney's revealed that her kidney's have a lot of calcium build up and some kidney stones. This is not good news. The nephrologist suggests she should come off the ketogenic diet. We met with Dr. Filloux (her neurologist) and he confirmed that it's a good idea to come off the diet because of her kidneys and because we are not seeing the results from the diet that we saw last Summer. Her seizures haven't improved from the diet and we haven't seen any developmental change. So, we are officially going off the diet this week. I do feel let down. I feel sad that the diet didn't work this time, I had my hopes up for a different outcome. I had hope that we would see her again like we did almost a year ago. I miss her so much. I want to share an experience I had a couple Monday's ago (the day before her surgery). Leah was having a really good day that day. She was very different. I can honestly say I saw "Leah" that day.  A window opened that was beautiful! I don't know why out of the blue a window opens. I truly feel God blessed us with that moment to get us through the hard days. I will never forget the way she looked that day!

She also got an MRI. The results are that her brain looks fine but it doesn't have the growth it should at her age but she also is very small for her age. Dr. Filloux is more concerned about her development at this point rather than her seizures. Most children with seizure disorders still develop. Why isn't she developing is the big question. He is calling to see if the test results have come back from all the genetic testing they did back in January. He is also having one more test done and then from that point we might be handing Leah over to another hospital. The hospital he suggests is the Mayo Clinic in Rochester,  New York. It will probably be a few months before we officially make that decision.  It will also probably take awhile to be accepted by the hospital. We are ready for a new set of doctors to take a look at this mystery girl. I know it will all work out if it's meant to be that we go there.

We got great news last week! Leah will be getting a medical stroller and car seat. The stroller itself is $4,000. Shocker right?  But it's awesome and its specially made for her. The wonderful part of this is that our insurance is covering the whole thing. Such an incredible blessing! Here's a picture of it:

Leah looks so cute without her NG-tube! She seems to really like this Minnie Mouse stuffed animal.

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