Josiah Update #3

on Saturday, June 27

Here's the latest on our little man...we met with the pediatric neurosurgeon at OHSU and he was amazing! He took us through each part of Josiah's MRI from his neck down to the base of his spine. The two concerns are the cyst in his spinal column and his deformed vertebrae/narrowing of his spinal column in the lower back.

The cyst is inside his spinal column area and they do not know why it is there. It is a fluid filled cyst and looks like a long, skinny water balloon filled with water hanging inside his spinal column. They are concerned that it could grow causing more pressure and ultimately they want to find out what's causing it.

Secondly, Josiah's lower back where he has the bump (that you can feel from the outside and it's what we started feeling when he was 4 months old), they originally thought he had one deformed vertebrae but the MRI showed three vertebrae deformed and twisted up. The concern with this is that these mangled vertebrae are pushing out (hence the bump) in his lower back and causing his nerve cord to have to go out and over this area and then tuck way under near his bottom. The reason this is such a concern is that when his nerve cord gets to this part of his back - it narrows from about an inch down to 1/16 of an inch which is way too small and he is at risk for this area to pinch off causing his nerve cord to be damaged. This area of the nerve cord controls his ability to feel in his legs, all of his leg mobility, function of his bladder and bowels and his kidney function.

Obviously we don't want him to have any damage to these nerves and his ability to function in any of these areas! The reason this "pinching off" is possible is because of the extreme narrowing and also because the last part of his spine (sacriatic area) is tucking under and not out like normal. Normally the sacriatic part of your spine takes most of your weight when you walk and "bounces" with your every step. Because Josiah's spine tucks under there is nothing in his lower spine to "take" his walking so all of his spine pressure when he walks is going to that area of his defromed vertebrae and causing his spine to narrow more and more in that area - hence the potential for it to "pinch off".

Now what? Our pediatric neurosurgeon met with three other pediatric neurosurgeons and the radiologist to go over all the details of Josiah's back. His comment was, "Josiah's case is so complicated because of all these variables that we need to put our heads together for his care." The doctors decided that they would like to do the next level of MRI on him. It will be an MRI of his complete spine (same as he had in April), his brain and also what they call a "live feed" MRI of all the fluids in his spine - blood flow, spinal fluid and some nerve impulses as well. This MRI will be Aug 17 at 8:00 a.m - we actually check in at 7:00am and then he's sedated at 8:00am and then the MRI will be from 8:30-11:30am. He'll wake up and be in recovery for about 45-60 min and then we have an appointment with the neurosurgeon at 1:00pm. Because MRI's are all digital now, as soon as it's done they can send it over to the doctor and radiologist right away - they'll be able to meet and talk about it first and then we'll be able to have our follow up appointment right away and won't have to wait. I'm SO thankful for that! :) In the meantime the doctor gave us a list of "symptoms" to watch for that could happen if his nerve cord were to begin to be pinched. Things like Josiah rubbing his legs - meaning his legs would be tingling, not wanting to put weight on his legs, regressing to crawling more than walking, acting like he is in pain when you lay him down to change him, etc. So far Josiah has none of these symptoms - praise the Lord!

Josiah doesn't have a clue about any of this stuff and is a BUSY little 19 month old. He's walking now all the time and getting faster every day. He's very curious and loves to figure things out. His favorite thing to do is put things in and out of cups, bowls or containers of any kind. We've also decided he's part squirrel because he hides stuff all over - under the couch, in our shoes, in my purse, behind his high chair, etc. It's hilarious! He's definitely the kid that you never want to get a hold of your cell phone or keys - you may never see them again - ha! :)

Dara is loving being on Summer break! She plays Jr. Golf once a week and we go to the pool at least 4x a week - she loves to swim. She's been having lots of play dates and enjoying seeing her friends. She'll be in 4th grade next year - I can hardly believe it!?! Shawn is winding up his current position at Adventist Hospital in Portland at the end of this month. They are in negotiations with him right now for a permanent position that will start the beginning of August. Once all of the details are worked out - we'll post about his new job! :) I'm keeping busy with both kids and all the fun Summer activities. There is never a dull moment around here that's for sure!

Please join us in praying for Josiah's back to heal - for the cyst to be dissolved, his three vertebrae to be untwisted and made whole, and for the narrowing in his lower spine to be opened up. We are still believeing God to do a miracle in his little body! Thanks for all of your prayers and support.
Dana (for Shawn and the kids)


Heleen said...

Thanks so much for the update Dana. I have been thinking about you guys so much and am praying for little Josiah's healing and for all of you to be strengthened. I'm sure it must be so difficult. I have been wanting to call you, but as with you I am running around every day, and Christie is at the age where she wants to talk when Mommy talks on the phone. Hopefully we'll touch base soon, but know that I am praying in the meantime. Love, Heleen

Anonymous said...

Thanks so much for the very informative post!! We will continue to pray for Josiah's healing and wisdom from the doctor's. It's so helpful to know more of what's going on in his little body. And hello? I seriously can't believe how much he's changed and grown from the last pictures! What a darling little man he is! So glad to hear how you guys are doing. Miss you all so much!
Love, Danelle

heartchild said...

Thanks for posting an update. It's nice to be able to check in and see how things are going. We'll be praying.