Unclear News…

I finally spoke with our neurologist and he was extremely vague with me.  Thankfully our pediatrician is awesome and had already shared some specifics with me, but he did not.  I am anxious to speak with our pediatrician on Monday knowing that she will help me understand what he {the neuro.} really thinks.

The details we know for sure…

• She has “non specific” Delayed Myelination in her brain {in the cerebellum}. Myelin is the protective coating around the nerve that helps transmit nerve signals properly and fast enough.  This is related to all sorts of syndromes and conditions, many of which we have already ruled out through blood tests.  Some have not been ruled out and we will be exploring those. The neuro. himself never even mentioned this which was frustrating that he didn’t share details but was very vague.  We got the actual terminology from our pediatrician who called us on her own to discuss the finding with us.

The Neurologist has ordered the following steps…

• Abdominal Ultrasound {looking for a benign tumor that could affect something having to do with balance}
• Urine test {this is to rule out a “metabolism of glucose in the brain” problem that is easily treatable}
• Another blood test
• Ear, Nose, Throat Dr. Appt.
• Ophthalmologist Appt.
• Follow up Neurology appt. ASAP so he can reevaluate her in person.

We are peaceful and will continue with the road, knowing that it sill could be “nothing” and also that whatever it might be could easily be healed by the Lord before we ever even give it a name!!!  We are also at peace knowing that this may be the beginning of a long unknown journey.  No matter what-God will be with us and we will be fine.  We are not fearful or worrisome people.  We do get anxious about the unknown but not in a fearful way.  We just like knowing answers, no matter how bad the answers may be.

I hope to talk to the pediatrician on Monday and hope to understand more of exactly what they are looking for now.  Hopefully I can call and get her in soon for the other appointments she needs.

As for Ladybug herself, she is doing just fine!  She spent the day after her MRI sleeping mostly and now she is back to normal.  She continues to walk on her knees and will occasionally pull up to stand.I have tried getting her to walk some but since the MRI she has refused completely.  She pulls her legs under her and screams. 

Her spirits are high and she is happy and smiling mostly!  Knowing she is not in any obvious pain has relieved us a lot.