Where we are today…
9/17 (Friday)
Ryder is in the process of being scheduled for an EEG (testing seizures). Dr. Jones (Ped) let me know it will take 4-5 business days for insurance to approve an EEG. Hopefully by the end of this week we can get one done.
Neuro's nurse called me back on Friday. I told her my concerns about the blank gazes I am noticing in Ryder. I also spoke with her about the mistakes that I noticed in the labs from the records I requested. She sweetly told me she wanted to schedule an EEG for Ryder. I told her the Ped was already taking care of that. She told me the lab results shouldn’t have made a difference since he was fasting even if it was marked that he wasn’t. She also told me that all the blood/urine results were in and everything looked normal. I was happy with the news, although annoyed that I hadn’t been informed that all the test came in. After reviewing the records I requested, I saw abnormalities in the result (so I thought) but I am not a doctor and must have misunderstood what I was reading. The results were at neuro’s office on 9/9/10.
9/20/10—Today
I got a call from neuro's at 1:24p.m. He informed me that all the first batch of blood/urine work have come in (excluding the most current blood work from the hospital) Results showing there are many inborn errors resulting. There is no pattern to the abnormalities found. He wants Ryder to see a metabolism specialist named Kirk Alick to further help analyze these results. Neuro also ordered another lab test-urinase acyl glycines. I spoke to neuro about my frustrations with miscommunications and waiting for critical results. After words of understanding, he is thinking Ryder may have Leukoenchepophy—a slower prognosis. I was a little relieved after reading about this (even though it still sucks!!!) It still doesn’t seem to fit Ryder—in my opinion, but I’m trying not to jump to any conclusions.
I spoke with neuro about a doctor that I have researeached and would like Ryder to see. He said this doctor was on the team that meet at Barrows and reviewed his charts. He said he was the best in AZ, but he will do the same as “we” meaning “he” is doing now and wait for a 3 month MRI to compare and determine regression. I already have a call into Barrows to get an appointment with this Doctor to review Ryder’s case.
I also am in the process of scheduling an appointment with Kirk Alick- Metabolism Specialist from neuro's referral. That in itself was hard to get since this doctor isn’t seeing new patients—but I did it
I went to Sonora lab and requested the bags and container to take his next urine sample/lab. I also got the previous mistakes on labs taken care of (so they say).
I have been looking on You-tube about Krabbe, Leukodystrophy, leukoenchepoly and all the other words thrown at us. As my mother-in-law stated—technology is both good and bad. I am trying to use this knowledge from the internet as a guide, but keeping aware that they are not Ryder—Ryder has his own journey! I was very touched by a little boy named Judson who had Krabbe’s disease. Watching his videos, I saw a lot of similarities with Ryder. While Ryder doesn’t have a diagnosis yet, I was touched by this little boy’s story. I have written to his parents and am praying that Judson will be Ryder’s guardian angel—no matter his diagnosis.
Appointments coming up: physical therapy, speech consult for oral motor, play dates with Amy/Renee?!!! EEG soon…..
For me (Denise) my friend let me borrow a CD-THETA Meditation System and gave me Tazo “calm” tea to help me relax. I have had two nights of great sleep---YAY
Denise,
ReplyDeleteYou are doing so much and I am amazed at how much you get accomplished in a day! It’ far more than me. I read the posts all the time and feel so helpless……Please let me know if there is anything Mike or I can do to help. You guys are in our prayers every day! I know Judson’s family would be grateful to hear from you and may have some helpful advice and guidance. God Bless….Holly
Denise,
ReplyDeleteYou are amazing and you are doing everything you can for Ryder! He is very lucky to have you as his mommy! I totally understand about watching the You Tube Videos. I would be doing the same thing. Do not second guess yourself, you are doing all the right things. Thank God for womens' intuition. Well, as mamas, I think we have mama intuition, really. You must be exhausted, so I'm glad to hear you got two good nights of sleep. I'm praying for Ryder and you guys daily.
Love you,
Carrie
Appointment w/ Dr. Alick--Oct.22
ReplyDeleteAll info sent to Barrow's hospital for John Bodensteiner's review. He will look at records to see if he should be seen in his luekodystrophy clinic or at the hospital.
Latest urine lab--gathered and brought to Sonora lab today.
I'm ready to relax:)
Hi - I would love to plan a playdate! Lets plan for Thursday, September 30th!! Cant wait to play with the boys.. Maybe it will be nice for a park date :O) Renee
ReplyDeleteHi Honey, my computer is back on. I thought I wouldn't ever use it as much. All your appointments and frustrations can make you prematurely gray. Believe me I know!! In all this I hope you are saving energy for your other guys. Get a sitter and have a romantic rondevou with Les. A coffee and a desert is all and just sit and talk. Try to not talk about Ryder even though that is utmost in your mind now. Talk about each other and how great Tyler and Noah are. Les will remember Dad and I disappearing for a coffee after dark. Generally I would be walking for exercise and Bob would catch up. We needed those times without the kids to let each other know that they are special and you still need them. Don't think for a moment that because our men don't act concerned that they aren't. We're doing the Dr. hopping and they are thinking about keeping the insurance in force. Both are very important. I love you Denise and will help any way I can. Mom
ReplyDeleteLet me know how the apponintment with Dr. John Bodensteiner goes. If you need to name drop with the referral I sent you, do so! This is how I can help the most. If you need an emergency baby sitter you have my number. If you post a phone number or address, I can start getting some donations (clothes, toys, etc.) Courtney
ReplyDelete