Wednesday, September 1, 2010

Different ways of dealing

Within our family we all have different ways of dealing with this news of Ryder's health. We haven't shared everything with Ty and Noah..just waiting to see what more results tell us. We really want to keep their lives as normal as possible. They do know that brother got pictures of his brain and the doctors and Mommy & Daddy are trying to figure out what’s wrong. Tyler (6) is our sensitive & smart beyond his years child. He is picking up on our stress---even though I'm trying so hard to be strong for him. He asked me a few days ago what I did to Ryder when he was in my tummy to make his brain hurt and why I would hurt him. We showed him how a brain develops on YouTube and that it’s not Mommy's fault. (YES--he is that smart & curious to learn about brain development :) Noah (4), on the other hand, doesn't understand what is going on. He is acting up at school and getting into trouble A LOT!!! Not sure if it's attention seeking or just our Noah's colors shining through :) Les seems to be in denial still. Hard for me to write--but he seems positive, stressed, sad, quiet, and supporting all at the same time. He is in need of some mountain biking I think:) He will be racing in a few weeks and he is really excited. I am okay at this moment. The first few days I was devastated. I couldn't talk to anyone and shared the news (even with mom, sisters & bros) through text. I couldn't even catch a breath to talk. The past few days I felt stronger and ready to do everything I can to find answers and help all my boys. Today was up and down with emotions. A friend who went through losing a child told me the many emotions we'll go through---few steps forward and backwards again..... God please give me the strength!!! We have had soooooo much support and people asking what they can do to help. I will write a blog of things people can do to help in the next few days---hard to think of at the top of my head, but I do know we need help emotional, financially and research wise. People have listed great ideas on FB like garage sales, meals, raffle fundraisers, babysitting. Please know that this is greatly needed and appreciated.

September 1st

Today at work I received a call from the lab. I am expecting results from the 1st round of blood work any day so I braced myself for news. The lady started out by saying "Can I speak with a parent of Ryder Hauer" After I told her I was his mom she said "Unfortunately I am calling with bad news." Okay--I literally fell in my chair and my heart was racing! She proceeded to tell me there were errors on 3 of the blood samples taken. Happy and pissed that was the "bad news," I ended up bringing Ryder to get 4 more vials of blood drawn. I did have a small meltdown at school trying to figure out what to do with Tyler....thanks Sousa peeps for understanding I'm overwhelmed and an emotional wreck right now:) Since he hasn't been eating well and throwing up a lot, he was dehydrated so they had to prick him in each arm to get enough blood. I did mention how they shouldn't call a worried mother and begin the conversation saying they had bad news!!! I also politely told them I would drive the blood work down to the lab if they needed...but I expected a rush order. After I brought Ryder home I noticed fluid draining from his ear. I suspected a bursted ear drum since he had the same thing 3 months ago. I brought him to the pediatrician and that was confirmed, so he's on antibiotics. I feel HORRIBLE!!!!!! He has been fussy and tired, had a low grade temperature, not eating/drink well and throwing up a lot:( I thought it was teething and being pricked soo much:( I'll have to take off work tomorrow to stay with him and Friday is my last day. Everything is happening so fast and is soooo unexpected it’s still almost surreal at times. For the most part I'm done grieving and ready to fight for my baby. I WILL make every moment count and cherish him!!!!

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!