Great News

The results from the MRI are back and the only thing it showed was the brain stem malformation (Chiari I).  There are no cysts or fluid in her spine.  So we are not sure what caused it, but it does not appear to be part of the cystic disease.  What a blessing.  We will see the neurosurgeon next Monday, the 25th to find out if this is the cause of Mattie's headaches.  I will post again as soon as we find out any further information.

As of right now, Mattie is doing well with the exception of some sinus problems which seem to be never ending.  Please continue to pray for her and remember God is good ALL the time!  Love to all of our prayer warriors!

MRI underway!

Mattie is having her MRI as I type. It will take a couple of hours as they are doing the three sections of the spine with and without contrast. We have an appointment with the neurosurgeon next Monday. They want to make sure fluid or cysts did not cause the brain stem malformation. In another note the liver doctored finally called back and confirmed auto immune hepatitis. The liver disease has nothing to do with the kidney disease so we are dealing with two different diseases a cystic disease and an auto immune disease. She is doing well though and enjoying her summer. They did out her on another medication that will help her liver flush better and help her not to itch so badly. We have an appt with her GI doctor in July. Cincinnati told us she will need to be followed closely by her GI doctor so we will develop a plan with her and go from there. I will update as soon as I find out the results of the MRI. Still searching for answers. Your prayers are greatly appreciated. And remember no matter the circumstance God is good ALL the time.

Still Waiting - Neurosurgeon appt scheduled

I have left two messages this week for the liver coordinator to find out what the final report says and if there is a plan.  She hasn't called me back yet.  I have no patience so this is driving me nuts!  I know patience is a virtue, but I also know my momma always said don't pray for patience because there is no telling how God would teach it to me....so I remain impatient!  I did receive a copy of the report and it has more information than she gave me on the phone so I have a few questions as it reads that she may have two things going on with the liver.  One being chronic hepatitis and the other being mild intolubular proliferation of the small bile duct.  I wish I would have listened to Momma and became a doctor, then I could read all of this and not have to wait...still waiting impatiently : )

On another note, we decided to go ahead and set up an appointment with a neurosurgeon here in Jackson.  I found one that graduated from LSU and has worked at Children's in New Orleans.  Which means he will probably be familiar with what Mattie has endured the past nine years.  She will have an MRI that will take a couple of hours on June 18.  They will take pictures of all three sections of the spine to make sure there are no cysts or fluid that caused the Chiari.  She will see the neurosurgeon on June 25.  We are praying and believing for great reports from that. 

Remember God is good ALL the time even if you are impatient, He still loves you!