Wednesday, January 12, 2011

Roller Coaster Week--ready for fun:)

This is already turning into a looonng week and it is only Wednesday-ugh! We are excited to go play in the snow with some friends this weekend!


Last Wednesday, the neuro I scheduled an appointment with in Sept. for March( then persistently got it moved to Feb.) called to tell me the dr. won't be in that day so the next appointment I could get with him was June---YES!!! REALLY JUNE--after a 5 month wait already!! Wasn't happy to say the least....
After a lot of thought, prayer and research, I have decided to take Ryder to a different neurologist at Barrows. This decision was based on the fact that the new neuro and Dr. Aleck (who is amazing& Ryder's Genetic/Metabolism Specialist) are co-directors of a clinic for neuro-genetic disorders. This can only turn out positive in my opinion--Dr. Aleck's office has worked so wonderful with me and I trust his judgement. A doctor he works so well with will more likely be a better addition to Ryder's team. Maybe this was an unanswered prayer since I've been wanting to have Ryder see Dr. Bodenstiener so badly. His appointment will be in March now.

Thursday wasn't much better. I got a call that the researchers lab that was interested in funding Ryder's PMD test wouldn't fund the test and Dr. Aleck's office couldn't get ahold of the PMD Foundation. I felt as though I was back at square 1 with this testing!!! I called the researcher's husband at home, the foundation number and e-mailed him. On Friday, Mr. Hobson returned my call. He is such a pleasant man!!! I spoke with him for about an hour. I am more than grateful for his time, wisdom and listening to me:) He told me his wife's lab won't be able to fund the testing, but the PMD foundation will---RELIEF!!! I learned a lot from our conversation. For instance- a group of 100 neurologist were recently given a true case study of a child with leukodystrophy and asked to diagnosis the patient based on symptoms, MRI's and basically a full work up on the child. Only 1 of the neurologist made the right diagnosis!!! Scary--and proof on how rare and misunderstood leukodystrophy really is.

Fast forward to Saturday...Ryder was very cranky.
Sunday night--lots of vomiting:(
Monday- tugging at his ear
Tuesday- GI appointment at PCH. Les came with me to this (right after my uro dr. app--possible kidney problems--which is another story--I'll stick to Ryder on this blog!!) I really liked the GI doctor! He was insightful and I feel, reliable. He did tell us, Ryder's condition is rare and he needed to further study GI issues that may result from leukodystrophy. I appreciated his honesty. Some insight he gave his--Ryder's liver enzymes are elevated, and continue to elevate. However, at this point the elevation is not of a high concern. The fact that the #'s keep rising means that we need to look into matters further, however, his liver isn't going to shut down really soon. He ordered more labs to test these enzymes. He isn't sure if the ALT & AST elevations are being released from the liver itself or muscle tissue. I pointed out to him the swollen lympth node on his neck that I've pointed out to every single doctor he has seen. I have always felt it's not normal, but the doctors have passed it off as being because he was getting over being sick and not a big deal. The GI said it may be swollen when he is sick, but should go away. This lump has been there since birth. Ryder had lab work yesterday that consisted of blood count and liver enzymes. He will also have an abdominal CT scan. Depending on the outcome of liver enzymes, he may need a liver biopsy ( I'm really hoping this isn't the case!)

When we got home after the GI the PMD order had arrived in the mail.

This morning after a 2 and 1/2 hr. ordeal and some tears (Ryder and I) we finally got the PMD test done!!! It was another blood test, but we have been through the ringer and back to get this test! I think that is why I'm so anxious about the results. It has been over a month to find funding for this test, and weeks before studying about PMD and talking to the insurance company. Now that it's done....I DON'T want Ryder to have PMD, but I do want answers.....I want to go to the next step to help him. If he has PMD... there is a foundation and a support group and researchers interested in Ryder. If not--he'll continue to have an undiagnosed form of leukodystrophy...... We can only wait and see.

Right now (after the blood work this a.m.) Les and Ryder are at the pediatrician to check on his ears/throat. Hope it's not another ear infection, but want to catch it before our Flagstaff trip:)

Ryder is getting OT, PT & Speech currently once a week. He was finally picked up by AHCCCS, so hoping medical bills won't be as crazy as they have been.

The rest of the family is doing pretty well. I had a good conversation with a close friend about religion. I have read some great books- The Shack, Heaven is for Real, & A Christmas Sweater. I'm getting ready to read the bible. I do have a strong faith, but will continue to strengthen my relationship with God. Talking to my friend about prayer, she gave me a new perspective to pray for guidance in finding people/ doctors to help Ryder. My experience with finding the right doctors has been such a struggle. I've always prayed for strength, but I will now also pray for guidance--thanks Carrie:)

Will let everyone know when lab results come back.