September 14th- The Waiting Game

It appears as though we are now at a brief waiting point with Lexi. The neurologist spoke with the neurosurgeon last Thursday and they would like to do yet another MRI. This one will be on Lexi's lower brain and spinal cord. They want to make sure there is no build-up of spinal fluid and/or they want to rule out the possibility of a tethered spinal cord. So, Lexi has an MRI scheduled for Friday, September 25th. She will have to go through the exact same steps she did 2 weeks ago with full sedation, IVs and a vent. If there is no spinal fluid build-up and her spinal cord is not tethered, they are hoping to put off surgery for the time being (hopefully until at least November or December).

We also made a trip to Cleveland last week to see Opthomology. The Opthomologist feels that Lexi's eyes turning in is directly related to her brain stem hemorrhage (chiari malformation). He would like to wait until after she has surgery before exploring eye surgery. However, the neurosurgeon does not feel the eye is related and would like to put off brain surgery as long as absolutely possible. So, for now, we are starting to patch her eyes (2 days left eye and one day right eye) to keep her vision from getting any worse. The patching will not help her eyes turn back out but will buy us some time until her next MRI. We will see opthomology again on October 13th.

The most difficult part of this past week is that while this malformation is very upsetting news, we were almost "excited" that we FINALLY had some of the answers we were desperately looking for! The chiari explains a lot of what Lexi has been going through. However, the neurosurgeon does not feel Lexi's current symptoms- no suck/swallow reflex, aspirating on thin liquids, reduced blink, poor muscle control, etc- are not related to newest finding, the chiari malformation, even though these are all symptoms of the malformation. The chiari is a new finding (within the last 1-2 months) and her symptoms were all present before this (right after surgery). So, sweet little Lexi apparently has 2 separate neurological issues- cranial nerve damage, including bi-lateral facial nerve damage, and a chiari malformation. The neurologist is now scheduling into December and January but we hope to get worked in to an appt. after her next MRI.

Prayer Requests:
Please pray for Jon and I as we learn patience with this entire process. We are confused and need a lot of answers that the doctors aren't able to give at this point.

Pray for us as we still struggle to find time to work with Lexi on all her therapy. We are almost settled into the new house (yes- it has taken us this long) but have about 2 more weeks worth of work. Please pray that we are able to get things finished quickly so we can focus more on the help Lexi needs.

Pray for Lexi's neurological issues. We are praying that the doctors find no spinal fluid build-up and that we can post-pone surgery for the time being.

Finally, pray for Jon and I as we continue to seek care for Lexi. We are actually looking into some "alternative therapy" for Lexi. We feel as long as it doesn't hurt her, it is worth trying! Pray for wisdom and we explore several options!

We will post next week with some updates on Lexi's therapy progress!