update on Jax (chiari malformation and other words i don't like)

I thought I would post an update about my Jaxon.

We have received so many phone calls and e-mails, I wish I could answer them all promptly...however that is not going to be the reality, so I thought perhaps a post would help let people know what is going on.

Plus the more people praying for the boy the better..right?

I'm getting ahead of myself however..so let me back up -

About three or four weeks ago Jax started having severe headaches.

He would complain of pain in the back of his head/neck, nausea, sensitivity to light sound etc. He would then go up to his room and fall asleep for several hours or overnight. He has always been a bit prone to headaches, but this was definitely out of the ordinary and had us concerned. I was thinking perhaps he had some sort of migraine thing happening?? We really didn't know. So, I scheduled him an appointment with our pediatrician on Wednesday the 17th. We went in early (8 or so) and Ty watched the girls and was planning to go into work when we got back. When the pediatrician examined him he didn't see anything that was very conclusive, but decided that because of the severity of the headaches he would send us to the ER for more testing. So we went to the ER at the hospital here in Neenah. Jaxon (on top of everything) had some sort of viral bug and had a fever that day, the nurse tried to take his temp under his tongue and he threw up all over her - poor guy. He was scared to make a mess on the clean white bed. I had to tell him that of all people the ER nurse could probably handle it. So the ER doc examined him and he had some anti nausea meds and IV fluids to help him feel better. Tyler dropped the girls off at our friends home (thank you SO much once again for having them Joanna) and came to the hospital. They did a CT and MRI of his head that afternoon and found what was most likely the cause of the headache.

He has what's called a Chiari Malformation and a related problem called Basilar Invagination.

Because I am not great at explaining, I found some definitions and photos.

Here are definitions of both:

About Chiari Malformation -
Chiari malformation is a rare abnormality at the base of the brain that results in brain tissue extending into the spinal canal. The condition may be congenital (present at birth) or may develop as the skull and brain grow.
Basilar Invagination -
Basilar invagination is a disorder in which the base of the skull is not formed correctly. As a result, the upper tip of the spine tends to protrude into the area where the spinal cord leaves the brain, and can cause pressure in this area.
Though mostly found in patients who have other spinal or bone problems, such as Arnold-Chiari malformations or osteogenesis imperfecta, occasionally some children have this problem alone. The exact number of people affected is unknown, but is believed to be extremely unusual.

So that evening we were sent to the Children's Hospital of Wisconsin in Milwaukee. There we met with a Neurosurgery resident who confirmed Jaxon's diagnosis. Since then the docs ordered a CT and MRI of Jaxon's spine as well (which we had done this past Wednesday).

We are set to meet with the Neurosurgeon and Spine specialist on July 8th in Milwaukee. We have also sent all of his information to the Mayo Clinic in Minnesota, which is about 4hrs. drive from our home.

That's really all we know for now. Tyler and I are trying to read up on the subject in preparation for our meetings with the specialists. It is likely that our summer could be filled with surgery, hospital stays and a fairly long recovery. We are grateful that we live by some wonderful health care facilities and hope to find the best possible care for Jax.

Thank you all so much for your thoughts, prayers, meals, babysitting service calls and e-mails. We have the greatest friends and family ever and we love you all so very much.

At the moment Jax is doing fairly well, and we will of course update as soon as we know anything further.