Wednesday, May 18, 2011

lots and lots!

...where do i begin?

i have many exciting things to report!

justin was fitted for his second set of braces. rather than the afo's that he's had, he will now begin wearing kafo's. i learned about these kafo's via leigh's blog. once i saw them, i knew they'd be perfect for justin because he does great with just afo's while he's doing anything but walking. once we get him into his walker, he needs a little more support at the knees. i asked everyone about them. i asked leigh, i asked all 3 of our PT's and i asked our nurse. no one had seen them before except our nurse and she was pretty sure they have been done at ai dupont. the next week, one of our PT's said she called lawall's prosthetics (the ortho group in the hospital) to see if they made them and spoke with the guy that is most experienced with them. we were given a script soon after that and we got justin fitted for them that very same day. today, we got a phone call to let us know they're going to be ready on june 10th. i'm so excited! but, we won't be picking them up until june 13th because... JUSTIN HAS TO HAVE SURGERY. :(

it has been determined that justin is going to need another surgery on his spine. this surgery (detethering/tethered cord release) will hopefully help justin with the newest development of bladder issues he's been having and possibly the leg rotation we noticed once he started working with a walker.

about 2 months ago, we had a urodynamics and an ultrasound. it was our first one in almost a year, since we had been in transition from CHOP to dupont. we learned that justin wasn't voiding on his own. this was not good news, because before, we were only told justin wasn't emptying completely, but now he wasn't even urinating independently. due to this sucky result, we were to put justin on ditropan (a nightmare), and increase his cathing to 4 times a day. we would have to return in 6 weeks to report his volumes and to have a follow up ultrasound... because in addition to our sucky urodynamics results, our urologist noted that one of justin's kidneys was a little bigger (or smaller, if you prefer) than the other. he wanted to have us follow up to see if it was any worse, different in size, or problematic.

six weeks later, (the friday before mother's day) we returned for our ultrasound and we also had a record of justin's cath volumes for each cath one week prior to the appointment. his volumes were EVERYWHERE - anywhere from 50-300mL. they weren't consistent by any means. we knew this wasn't good, but we didn't know what to expect. after our ultrasound, we met with dr. banihani. the first thing he asked when he got into the room was, "has justin had any surgeries other than his shunt?"...meaning, neurosurgically (if that's a word). we said, "just his closure." he said, "okay. i think justin has tethered cord." i said, "really?!" but in a tone of like.... "you're kidding me, right?" he walked out of the room to get the record i had brought of justin's volumes and mama bear burst into tears. he explained that justin's numbers were way too high and random and this is a sign of tethered cord. he went through some of the questions we had and said he'd called neurosurgery to find out if they wanted to see justin. we left urology that day with fear and disappointment. we are now cathing justin 5 times a day and overnight. we're continuing with the ditropan (still a nightmare). and, justin's kidneys looked fine... it's just his "make" that one is bigger than the other. no biggie, as long as there are no changes.

before we even made it home from our appointment that day, i had received an email from dupont confirming a follow up appointment with neurosurgery. we were scheduled to go in the tuesday after mother's day. we came prepared with a list of questions. dr. campbell confirmed that he agreed justin is having tethered cord symptoms, but he doesn't feel the effects are permanent at this point.. this is so scary. we always knew tethered cord was a possibility. we always knew urological issues could come and go. but, we felt good when we left the appointment with neurosurgery. so, yes, our lil jubba is having surgery on thursday, june 2nd. we are told so far it will be scheduled for a 5 day inpatient stay, but that doesn't mean he has to stay for the whole 5 days. however, they want him to be flat for the first 3 days. how i will do this, i will never know.. but i'm assuming medication will be given to keep him a little relaxed. now that i'm home, i don't feel that i asked all of the right questions the day we met with neurosurgery, but i guess you can just never feel prepared when you know your kid's getting another major surgery.

i'm scared. i know there is a chance things could get better, stay the same, or get worse. as long as they don't get worse, i'll be happy. i know my lil jubba is a strong boy and he will recover, but i'm just kind of disappointed it had to happen RIGHT NOW.

why right now? because WE JUST ORDERED HIS WALKER (it's really a gait trainer). it should be here in about 2 weeks. we got word yesterday that the insurance company approved it and the vendor said it would be ready for us in two weeks. hmm. two weeks. what else is in two weeks? justin's second birthday! we have a HUGE party planned to celebrate two wonderful years with a wonderful little boy. i cannot believe my lil boy is going to be two.

so, yes.. we've got lots of exciting news. most of it is good news. justin is making wonderful progress, despite needing to have surgery. he's doing great with the gait trainer we practice with at dupont and he has mastered crawling up our steps. he's actually pretty pleased because he does it every chance he gets. he's proud. i'm proud. we're all proud of the wonders this kid can accomplish.

madi's last week of school is next week. she has enjoyed it to the fullest. she will be so bummed when she won't have to go all summer, but i'm sure she'll manage since uncle and dude will be around more often. next year, she will go to pre-k 4 days a week. she misses the cut off, because she is a september baby. i'm sure she'd do just fine with kindergarten, but i think she really enjoys the classmates she has. she has made friends with so many kiddos. i'm happy to see how much she enjoys school and other kids. in fact, her bff is also named madi. madi and madi have been asking for months to have sleepovers and get togethers, and they even fight over justin bieber. it's precious. i don't have the heart to tell them he's mine! ;)


  1. Hello!

    I stumbled upon your blog, and reading few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.

    Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.

    I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at and visit This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.

    Warmest regards and happy new year,


  2. Hi. I Just found your blog. I am Praying for Justin and your family. Please keep us posted when you are able to. God bless you.