Phrase One...

So here we are at Phrase One on this very long journey...

After calling the neurosurgeon at Children's last Monday, we were told that we needed to see Dr Keating as soon as possible. We had our appointment Thursday morning on October 7th.

Three whole days I sat & waited, wondered and WORRIED...

On the day of our appointment, things couldn't have been worse. Annabelle (who was coming with us) was truly "out-of sorts" while Benjamin just wasn't feeling well. Not to mention, I was taking my first solo drive into DC...

Living only 16 miles from the hospital, you would think it would be a short drive in but not here...I left 9:30AM for our 11Am appointment and after 1 hour and 34 minutes of stopping more than driving, we made it to our appointment.

At first sight of Dr Keating after entering into his private office (yes, no appointments were available through the neurosurgery's clinic so our appointment was scheduled during Dr Keating's office time), I was very impressed! He handled both Benjamin and Annabelle with extreme care and was very understanding of our situation.

Dr Keating than let each of our children play with almost everything he had in his office...toys, books and yes - skeletons! Lucky for us, his office had these HUGE ceiling to floor glass windows that over looked the ever so busy Michigan Ave and a near by waterway that both Annabelle and Benjamin were have a great time looking out of (not to mention while enjoying the Fruit Loops I packed up as well).

Anyway, Dr Keating than explained to me what exactly is going on with Benjamin. According to him, Benjamin has a Tethered Spine, an Occult Spinal Dysraphism and some curving in his C disks among other things. As of now, Benjamin is scheduled for surgery on the 26th of October with Dr Keating and his team of neurosurgeons. He will be in the hospital for about 4-5 days. We were told that once the surgery takes place and he is in recovery, he will be placed in a "comatose state" while laying on his stomach for at least 3 days, to help with his healing, pain management, and most importantly so he doesn't move.

Between, myself, Keith, and my mom ~ He will NEVER be left alone during any of his time while at Children's. We are all working together to see that all of our children's needs will be taken care of...seeing how we have two Halloween school parties and parades schedule for that week as well.

Dr Keating also explained to me that once he comes home, I WILL need another set of hands available for he will STILL be recovering and will need 100% of my attention. Grandma has signed on for being those extra set of hands until Thursday (the week following his surgery).

As for the risks, there are many involved...

First off is 40% of paralysis of his legs (while Dr Keating is 100% confident this will not happen he still has to mention this is a risk)...

~ and ~

60% chance of never having normal functions of his bladder, urethra, kidneys, bowel and/or colon. 60%!!!!!

{{{now here is where the real issues begin...and only time will tell if all of THIS is related and/or will be affected}}}

While he kept explaining this 60% chance to me, I was not overly worried (I know I MUST be crazy) BUT seeing as we adopted Benjamin through the special needs/waiting child program as a child with bowel issues, we KNEW this is something that can happen. And we prepared ourselves for this a long time ago...(now this is not to say that I am NOT worried because believe me ~ I AM!)

Dr Keating is also not 100% his very LARGE fistula and his spine/spinal cord issues are related. We DO know his IMPERFORATE ANUS (which he was probably born with and had surgery for it while in China ~ that we were NEVER told about) are related. And that he does has some major issues that are going hand and hand with both diagnoses (his imperforate anus and his spinal issues).

Anyway, so here we are Sunday October 10th ~ ONLY FIVE DAYS AWAY FROM HIS 3RD BIRTHDAY!!!! I can't begin to imagine what this little boy is going to have to go through within the next few weeks. And here we are only on Phrase One of this very long road...

All I can say is finally we are getting some answers and we are moving forward which is all we ever wanted in order to help our son the best way possible.

I must admit, I am exhausted ~ more mentally than anything but I truly am. But I know I must keep moving, learning, praying, and fighting for our son. I can not THANK YOU ALL enough for all the love, support and prayers that you all offered to us during this very emotional & critical time. THANK YOU ~ THANK YOU ~ THANK YOU from the bottom of our hearts!

(((I also asked Dr Keating if Benjamin's weight and height issues can be related to his spine/spinal cord issues as well and he told us that as of now, he does not know. We will have to wait and see if things change once he has recovered from the surgery.)))