Neurology Appointment Summary

Discussions from our neurology appointment on Monday:

Epilepsy
Severe to Profound Bilateral Sensorineural Hearing Loss
Cortical Visual Impairment (CVI) and
Cerebral Palsy (CP)

Obviously the epilepsy covers the seizures they believe Tessa had been having frequently until starting her on the medication, Trileptal, in the hospital. The only seizures we were ever aware of, were the two that she had in the hospital. Because of how drastic the improvement in her behavior was after starting the medication, they can only assume that she had been experiencing them since birth. We have had continued success with the medication and are very thankful for that!

The severe to profound bilateral sensorineural hearing loss is the diagnosis that we received from the audiologist after Tessa failed her hearing screening during our early August hospital stay. She has been fitted with the most powerful hearing aids on the market. The information I have read says that even with the most powerful hearing aids, she will likely rely heavily on lip-reading and/or sign language....but I say, God knows how incredibly important it is to us, as her parents, to be able to communicate with our sweet Tessa, so we say...hearing, speaking, signing, lip-reading...whatever it may be...it will be beautiful ~ because it will be the way that God allows us to share, with our precious daughter, her incredible purpose in this world!

Cortical Visual Impairment or CVI is the diagnosis for Tessa's vision difficulties. We have our follow-up vision appointment this next Wednesday afternoon to find out a bit more of what this might mean for Tessa. One thing I read online said that when a child with CVI needs to control her head, use her vision and perform fine motor tasks, the effort can be compared to a neurologically intact adult learning to knit while walking a tightrope. We say, we are committed to helping Tessa achieve her greatest potential in this area of her diagnosis! She has vision, she does see things and track things with her eyes....it may be overwhelming to her at times and be a bit more difficult for her....but just like anything else...it's not about the diagnosis, it's about our faith and our perseverence ~ and we got-that!

Cerebral Palsy or CP was discussed in more detail at our appointment Monday, than it had been before. It is anticipated that Tessa will deal with Spastic cerebral palsy. This refers to the increased tone, or tension, in a muscle. Normal muscles work in pairs. When one group contracts the other group relaxes, allowing free movement in the desired direction. Due to complications in brain-to-nerve-to-muscle communication, the normal ebb and flow of muscle tension is disrupted. Muscles affected by spastic cerebral palsy become active together and block effective movement. The doctor anticipates that we will begin to see signs of this in Tessa over the next few months. This is the area of diagnosis that we do not feel like we have had any experience in with Tessa so far...so we will begin watching and learning in order to be equipped at that point in time. We will also begin therapy in the next week or so, potentially twice a week, to address her motor delays and potentially the effects of the CP on her body. It is still very much an unknown to us ~ to everyone. There are so many types of CP and, with anything else, a range of severity...so to know how it will all end up affecting Tessa, will take time to determine and understand.

The most hopeful part of our discussion at Tessa's neruology appointment on Monday was the potential for Tessa to begin the process of rewiring her brain. We were told in the hospital that babies brains are incredibly resiliant...but we received more insight about this resiliency in our rewiring/remapping discussion with her neurologist. For example, we have been told that there is significant damage to the vision part of Tessa's brain, hence the CVI diagnosis...but what we don't know, is how Tessa could begin to remap where she processes what she sees, so that it bypasses the damaged part of her brain and begins processing through an undamaged part of her brain. Brilliant, absolutely brilliant! This beats the heck out of "We Don't Know"....this information presents Tessa with the opportunities of a lifetime! This gives us, as her parents, something to encourage her in and something to help us fight for, with her~! The potential here is HUGE! With a little encouragement and the strength God has given her, Tessa can begin (and I believe has already begun) to rewire! There is also the potential for Tessa to remap the focal point of her seizures...meaning no-more-seizures! It is a possibility...and I tell you what....between the possibilities considered by the doctor and our FAITH...Game-On!

It has taken me several days to compose this particular post. I have decided that it isn't as much about the daunting task of sitting down to write about the negative, but more that what the doctors have to say to us is not where we put our trust. We trust in our faith and we have confidence in our faith. I write from a very honest and true place in my heart, and while I understand that each and every diagnosis is important to understand in order to approach her therapy, what we believe is so much more important to us. It is conflicting to have to embrace the knowledge and information about Epilepsy, Hearing Loss, CVI and CP...when ultimately our journey with Tessa is one of faith and perseverence. But at the same time, we trust that God will provide us with the tools on our journey, to in fact, help us help Tessa, achieve her greatest potential in every aspect of her life! It is a responsibility we have been given and a responsibility we are committed to with every ounce of who we are!

I felt that it was very important to cover the points of discussion from our appointment on Monday, so that I am able to address each diagnosis throughout her journey, knowing I have presented them to each of you, here. Your encouragement is invaluable, and your prayers, our lifeline...and I do believe the specifics of our journey are important to share for that purpose.

Thank you for your patience as I found the time and the energy to share some specifics. Whether or not they are specifics for Tessa, well let's all just start praying for her rewiring skills and wait and see, right!

~Whitney