October 1- Results

We made two trips to Cleveland in 5 days. My mom and I took Lexi on Friday for another MRI. This was of her spinal column. Lexi did well (although they once again had a really difficult time with her IV). But, she was only poked 14 times so they are improving! The neurology nurse called on Monday and said that the results came back normal! Praise the Lord! This means Lexi does not have a tethered spinal cord and there is not spinal fluid build-up. She then set-up an appointment for us to see the neurologist, Dr. Friedman, on Tuesday.

On Tuesday, Jon took the afternoon off work and we headed over to be sure that we both received answers to a lot of questions. Dr Friedman is a fantastic doctor and is very thorough. He spend an hour with us talking to us and examining Lexi. It appears the Lexi, once again, is a bit of an "anomaly." Neurologists have always assumed that you are born with a chiari malformation (this herniation of the brain stem). But, Lexi was not. Her MRI results only 5-6 months apart and very different. This has "stumped" even the neurosurgery team. Because of this malformation suddenly occurring, they would like to wait and see what happens with it. This is good news for our family as it means they will not be doing brain surgery immediately. Lexi does has some fluid build-up on one side of her cerebellum that they will keep a close eye on. We will see the neurologist again in 3 months and if her symptoms have not changed, we will wait and do another MRI in 6 months. At that time (either in 3 or 6 months) we will see what the neuro surgeon thinks about surgery.

Perhaps the most difficult and frustrating thing for Jon and I is this- all of Lexi's symptoms are symptoms of a Chiari malformation, which means they would typically do surgery immediately. But, since these symptoms occurred immediately after heart surgery and the chiari is new, none of them are related! Ahh! So, they are telling us to watch out for symptoms- what symptoms?? She has all of them!! Dr. Friedman said we should make sure her symptoms are getting better and not worse. So, we have to keep a very close eye on Lexi and write down any unusual things she might do. This is very stressful for a parent!

We again asked Dr. Friedman what might have caused all of these symptoms- reduced blink, swallowing difficulties, facial nerve damage. He honestly has no idea but can definitely narrow down that something happened between the time she went into surgery and the time she woke up 6 days later. Unfortunately, no one knows exactly what happened. As you can imagine, this is so hard to us as parents to not have any answers as to what happened to our sweet little Lexi!

Finally. Dr. Friedman is concerned about Lexi's very slow development. She is significantly behind. She is 11 months old and is about the development of a 4 to 5 month old. However, the reassuring part is that he thinks she will eventually get there. Lexi has a lot of strikes against her. But, she is a fighter and Jon and I are fighters. We are DETERMINED to get her better. We are praying that we will see huge leaps in her development as, hopefully, her nerves continue to heal.

Prayer Requests:
Pray for Lexi's Chiari malformation and that her symptoms do not get worse. With her heart defects, brain surgery would be a bit more dangerous for her. Pray that we do not have to have brain surgery ever!

Pray for Lexi's eyes. Since nuero surgery is not going to operate in the next 3 months, it's back to Opthomology for (most likely) surgery. Pray for wisdom for the doctors.

Pray for my parents, Lexi and I as we travel to Cleveland October 13th and 14th for 2 full days of appointments. I believe we have 9 appointments (including 2 heart tests and a 3 hour feeding clinic appointment).

Finally, pray for Jon and I as we re-work our budget. Each trip to Cleveland (When we don't spend the night) cost us about $75-$100 with meals, gas, parking, tolls, etc. Going from a 2 income to 1 income family has finally caught up to us and we are coming up short every month. Pray that we can find and make the necessary cuts for me to be able to stay home with Lexi! This is probably our biggest burden at the moment!