Wednesday, September 1, 2010

Up until now

Just from the questions I’ve gotten from family and friends that I’ve talked to, I thought we’d start with a little bit of background. Ryder is in good general health right now. He is in the 11% for his weight, so he’s still in the normal range, but on the small side. He is also somewhat behind developmentally – not going from laying to sitting or sitting independently until about 10 ½ months and is just now pulling himself up to a standing position. He does an army crawl to get to where he wants to go. He’s also had issues with foods being introduced and vomiting. That he is still continuing to develop is good news! He has started physical therapy. He’s a happy baby.

When he was just a few months old, both Denise and the pediatrician noted a problem with his eyes that we now know is nastagmus (rapid, involuntary, oscillatory eye movements). That has continued and Ryder was taken to a specialist for this. The ophthalmologist ordered the MRI which was done on August 17th. We finally got the results from the doctor on August 24th telling us he has abnormal white matter on his brain.

The radiologist thought it may be leukodystrophy or adrenoleukodystrophy. Both are very serious diseases.

 A pediatric neurologist at Desert Banner Hospital was recommended by the pediatrician. On August 26th, we saw him. This appointment was a start to a learning process that is new to us and it's going to take some time. We recorded the visit so that we can refer back to all the things discussed. The neuroligist showed us the MRI scans and also told us about some other things it could be (there are about 50 possibilities). As of now, Ryder has patches of white brain matter missing which is rare in itself. The white brain matter is myelin which transmits the nerve impulses to the rest of the body. The neurologist will be looking into research more. He seemed focused and determined to take all the necessary steps needed at this time. After listening to him, Denise and Les decided to proceed with further testing (as in blood work and urine sample). After results come back the next step is to find a specialist. The neuro said he will send the info to the John Hopkins Hospital for further review as well. He said he doesn’t believe it is adrenoleukodystrophy. There are many different forms of leukodystrophy, and the blood work will start to narrow these down. He also mentioned that it my be Mitrchondrial. We are currently collecting information on medical backgrounds of both the Mullen and Hauer families.

Denise spent Monday checking into insurance / leaves, etc. Lots of things she didn’t want to hear. She doesn’t qualify for Family Medical Leave of Absence (FMLA) after taking so much time last year having the baby and then the hysterectomy. She can’t take Short Term Disability (STD) because it is Ryder’s medical issues not hers. She can take an unpaid leave up to 1 year, but can’t accept any sick day donations because again it’s Ryder’s medical issue. He can’t be added to her medical insurance as a secondary insurance (Les’ insurance is better as the primary). She’s looked at life insurance for him through work, but it won’t count if she ends up taking a leave. Denise has decided to take a leave. Her last day at work will be Friday. We are getting more suggestions through Facebook for other things she can look into. Thank you. These will all be checked into.

This waiting game is hard. The blood and urine tests that Ryder is having done are very specialized and need to be sent out to special labs. It will take 6-8 weeks to get results back. The neuro will keep us informed as results come back. Ryder will have another MRI done in about 3 months to see if there have been any changes.

We greatly appreciate all the support and prayers that we have received. We will try to keep this blog updated as we get more information.
I enjoyed my vacation too!