Thursday, September 3rd- Not the news we wanted!

We finally heard back from both Doctors today with Lexi's MRI results. We got some good news and some not-so-good news.

First, her MRI went very well! It took them over an hour to get an IV in her poor little veins. They had to poke her 21 times (but fortunately they had already put her to sleep with a gas mask). Her veins are just so tiny and have been poked so many times before. The MRI took about 3 1/2 hours. We were there for 7 hours total but were able to bring Lexi home by early evening! She was a trooper and all the doctors commented on how strong she is! (The cardiac anesthesiologist also took the liberty of doing her hair into a mohawk- she has CRAZY hair!)

The good news: The cardiologist called today and said there were no surprises on the MRI. Lexi still has 2 narrowings in her aorta but nothing they are extremely concerned about at this point. Also, her blood vessels don't appear to be overly narrow. This is very good news!

The bad news: The neurological nurse called and there was definitely a big surprise on her brain MRI. She said this MRI, as compared to the 5 done in November and December of '08 were drastically different. Lexi apparently has a chiari I malformation. Basically, her brain stem is herniated and the bottom of the stem is spilling into her spinal column. Typically, the herniated portion is between 3-5mm. Lexi's is 9mm. They are finding this to be very "unusual" (where have we heard that before?) because there were absolutely no indications of this on her last 5 tests! Why this would come up now is odd.

What's next: Next week after the holiday weekend, the neurologist will be meeting with pediatric neuro-surgeon to discuss the next step. They will probably do another MRI of her spine as one of the biggest issues is that with pressure on the spinal cord from the brain, some experience leaking of spinal fluid. This is, obviously very dangerous and they want to be sure this is not happening. Most likely, since Lexi's herniation is so large and she is displaying many symptoms, they will do brain surgery. This will require them to open her skull at the base of her neck, remove of few of the bone fragments (I don't' remember the medical term) and then mesh the brain stem up. This will give the herniated stem room to "grow." 80% of people who have this surgery recover fully. 20% experience no relief of symptoms. We are simply praying at this point that the doctors have wisdom on what to do. Obviously the thought of our little baby going in for yet another surgery frightens us. But, we will have to do what is best for Lexi.

Please pray:
Pray for little Lexi. If you google her chiari malformation, mostly adults have symptoms and they say it is very painful with extreme headaches, nausea, etc. Little Lexi is not able to express these to us. Pray for any pain she might be in. One of the symptoms is sleep apnea and Lexi has been sleeping very poorly at night and taking very short naps during the day.

Pray for the neurologist and neuro-surgeon who will be making decisions. Pray for wisdom and guidance and that they will be able to explain things very clearly to Jon and I.

Pray for our family. This newest development has been very difficult as we thought we were on the up-swing of Lexi's condition. Pray for peace and for us to find much-needed rest and time to spend with Lexi (and the twins).

Pray for our family and my parents as we head to Pennsylvania this weekend to visit my grandparents. It is a 7 hour trip but my grandparents are in poor health and have yet to meet little Lexi. Pray for safe travel and an up-lifting time with my extended family.

Thank you all for asking us about Lexi. It means a great deal to us (especially in times like this) to know that so many are praying for her healing! If you'd like to leave us comments, you can do so to our e-mail at thehocansons@yahoo.com or on Lexi's facebook "Group Prayers for Alexis Mae Hocanson.