Seriously? Enough with the Pain, Already!

Zachary cried in pain this evening and not about his legs this time. It's his back and his stomach, I'm thinking this would be the third time he's had pain in his back. The first time was from the spinal tap, the second time from the CT Myelogram and now it just hurts. Stomach pains are on and off three or four times a week. I put his TENS unit on and gave him a Benedryl, after about 45 minutes he settled down.

A Voicemail Message

This is Dr. Jordan I just wanted to leave you a message to let you know that I spoke to Dr. Singer about any possible treatment for the adhesion the sticking of the spinal cord and the coverings of the spinal cord together and he said that he had never done such a thing and he wasn't sure that it would be a good idea but he was going to talk to one of the very senior neurosurgeons here to see if they had done something like that I also spoke to the team in Baltimore and they are expecting the CD's on Zachary and they had some potential thoughts about treatment as well but they obviously want to see all the images first so once they have gotten back with me I will get back to you and I expect that it will be about another week I just wanted to let you know and I hope you have a great weekend, thanks so much, bye!

A Steady Stone

That itty bitty miracle we all ordered? Yeah? Well, it's been found!! I thought for sure it would be on backorder, but no, it was sent right there to Dr. Jordans office, He knew where I'd be! ;) I can't even express the relief of finally having an answer to all the mess going on within Z's body. Okay, are you ready for the update? Well, of course you are ... Here we go!
A little anatomy lesson to start this all off. You see, you have a lining that wraps around the outside of your brain and spinal cord, now between your brain, spinal cord and this lining there is free flowing fluid, called spinal fluid which helps to protect these parts. In the center of Zachary's back, about 6 inches vertical, this lining has attached itself to his spinal cord and within those 6 inches there is no free flowing spinal fluid. It is believed that when Z is active he pulls on this area that is stuck to his spinal cord and creates little tears, causing bleeding within that area, this ... is what has caused the Superficial Siderosis in Z. 

Dr. Jordan's art work. Aww, I should've had her sign it. 

Now, you ask. Where do we go from here? Oh well I have the answer to that! Here! Here! Pick Me! Pick Me!! lol The results to Zachary's Myelogram will now go the the neurosurgeon who performed the Angiogram on Z to get his recommendations and then all of that will be sent Dr. Levy at John's Hopkins to get his recommendations and then after all the doctors have all consulted with each other ... then we will find out what will be next. For now .... we are basking in the moment of this totally awesome miracle. In case you didn't know ... statistically there are very, very few Superficial Siderosis patients who are even able to find the source of their leak. We are truly blessed! Thank you all for keeping Z in your prayers, this is definitely not the end to our long journey, but a steady stone to step on as we move forward through the storm. :)


What about Ferriprox? Is Z able to get that yet? If Z were getting worse then this would be something we would look into but because he's pretty stable right now and the drug has just been approved by the FDA I think we should just sit tight for now.


While researching I found that the statistics for losing hearing is pretty high, how often do you recommend I take Z for a hearing test? Once a year


Z has an appointment to see Dr. Thomsen about his stomach pains do you think it might be related to SS? I'm not sure about that, I'd have to consult with Dr. Levy about that one. I'm thinking it has something to do with Zachary's pain medication, keep that appointment with Dr. Thomsen I'm interested to see what she has to say.

Stomach Issues Continue

Z is still having stomach pains. When we went in to update his shot records on the 11th of November, I mentioned these pains to his doctor. He has an appointment to see Dr. Kelly Thomson to see if she can figure out what's going on. Seriously? I wish we could get off this roller coaster.

Is My Faith Wavering?

Zachary suffered through the night with some pretty intense leg pain, I gave him a full Benedryl and an Aleve, put on his TENS, rubbed his legs with therapy creme and put ice on his legs, and still he had a very rough night.

This morning he woke with stomach pains as he a has been doing for several weeks now.

I'll be honest ... a dear sister sends out spiritual messages everyday, and very rarely do I take the time to read them, but this morning after my own individual prayer I read this.

My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; D&C 121: 7

I don't ask "why us" anymore, because I have faith that in His time things will work out, but do I waiver in my faith when I ask or wonder these things? Why is His time not in sync with ours? :( Is the feeling of helplessness and heartache for a child that endures so much pain not enough? When will Z finally be free from all of this? What is it that we're missing? What is it that we're supposed to be learning? How do we get this storm to pass by quicker? Is it possible that we've used up all our miracles?

Ashley survives the impact of a horses hoof to her abdomen, bleeds internally for three days because the doctor we went to didn't look further and she survived.

My father went on several deployments to the middle east and he survived.

My mom was pinned between a truck and a tree, she survived.

The twins were in an accident that took two lives, they survived.

These are only a few of the miracles we've been blessed with, have we maxed out our miracles? Can we get a loan?

The CT Myelogram

Z with a member of the sedation team

Zachary wore his yellow hospital socks from the last time and one of the nurses said they were ugly and gave him these. You know it doesn't seem like much but a simple pair of socks sure can help calm a frightened child. Thanks, to whoever donated these!

Zachary did really well, he was awake and talking when I came into the recovery room. He was a little wobbly at first from the medications, but all in all in good spirits, and ready for his chicken nuggets from McDonalds, lol. We should receive the results to this test in a couple of days.

Researching & A Possible Information Gold Mine!

The web is filled with all kinds of information on Superficial Siderosis, and reality is slowly slapping me in the face. I was told by Dr. Jordan to research or look up information on Michael Levy, Rafael Llinas and N. Kumar. I have been studying and have found that the success rate in finding the leak isn't very high at all, however, we will continue to hope and pray that Z will be one of however many to have a success story.

So, as I went to research the Meylogram and what other procedures are out there that would help to find the leak I came across a support group on the web. I'm pretty careful about the kind of information I gather and this seems to be a very good way to get some accurate information. Dr. Levy's name is mentioned quiet a bit, and already there are a lot of questions being answered. I think the saddest part of all of this is that Z will most likely have I long trying relationship with SS. The statics aren't very promising when it comes to finding the leak ... and the prognosis? Yeah, nothing promising there either.

I am in contact with the person who heads up the support group. Can I just say? Wow!! He has ton's of information, it's like I've hit an information gold mine. There is so ... much that this disorder/disease can do and none of it is good. It's all really quiet depressing and it can bring you down, but with great faith I stand tall for my son and will continue to do so.