Friday, November 30, 2012

Myelo Clinic and New Things

Ahh, the joys and trials of Myelo Clinic days!  Things never go quite as I expect and I always come away with a deluge of information.  I love seeing so many doctors in one day but Mason is less than thrilled.  To keep things interesting I made a rookie new mom mistake that I haven’t made since Makayla was a baby.  I grabbed the small diaper bag off the hook instead of the big one we used last week when Mason had surgery and showed up for clinic with exactly ZERO diapers.  For the child who needs changed at least every 30 minutes.  Mmmhmmm.  At least we were at Children’s Hospital where diapers are always in stock and on hand so they just gave us a stack for the day.

Our day began early, leaving the house at 6am to make it there in time for Mason’s rapid MRI of his brain.  Makayla came along today for two reasons – one, she wanted to go in the MRI with Mason so he wouldn’t be alone (I’m pregnant so I can not go in), two, she wanted to learn more about what Myelo Clinic is like, meet the doctors, ask questions.  It turned out she was not allowed to go with Mason during his MRI because she is under age 18 – dumb, but true.  So we listened to the poor guy cry while they strapped him down and did all his pictures.  100_1106We also got a renal ultrasound of Mason’s kidneys and bladder done today about halfway through our visit.  The urologist looked at the scans and said everything looks fine so we don’t need to increase our cathing schedule or add in bladder medications.  When asked by Makayla about what the medications do this sweet doctor launched into a 15 minute mini-lesson complete with diagrams drawn on the paper of the bed.  Mason’s circumcision had also reattached to the penis (penile adhesions) so the urologist pulled on that and unattached it again.  Thankfully he didn’t feel it at all – a small perk to nerve damage.

Neurosurgery looked at Mason’s MRI and everything looks wonderful.  His newest shunt is working as it should for now.  Of course, it’s only 10 days old.  Things could change any time.  The doctor is scheduling a full brain and spinal MRI for sometime in the next month or so to get an official baseline on Mason’s body.  He will have to be put to sleep with anesthesia for that process, which will take up to 2 hours. 

The biggest news to us today was from Physical Therapy and Physical Medicine.  They focus on mobility and after seeing what Mason can do and learning what he is trying to do at home (climb stairs and pull up to stand at the couch) they decided it is time to get some braces for Mason.  Without the bracing there is no way Mason will ever stand, he simply does not have the nerve and muscle function to even maintain kneeling beside the couch.  His functional level is T12, that means that the nerves and muscles below the 12th Thoracic vertebra are not working. 

So today that handed us a prescription for HKAFO’s.  That stands for Hip Knee Ankle Foot Orthotics.  I’ve not been able to find too many nice pictures of these online to share so I’ll point you to a post of another young man with Spina Bifida, Caleb, whose progress we love to watch in his mom’s posts.  She has a picture at the top of this post of really short AFO and then tall HKAFO’s with full leg braces and a band that goes around the pelvis/waist.  These taller braces are what Mason is getting.  He goes in 2 weeks to be measured and casted then the orthotist will get to work making them.

The idea for Mason is that these will enable him to stand and play at a new height, one he is trying to reach but physically cannot.  His will have locks at all joints to keep from bending because he can’t actually use them that way.  The Physical Medicine doctor does not believe Mason will be content to use these long-term because they will limit him from actually moving places and chasing his siblings, but they will be good for his bones and body (weight bearing = strengthening) as well as giving him some developmental perks.

Those are the big things from today’s visit and so I’m going to get off this computer and go help my children, who just came in from outside and are in desperate need of hot chocolate they’re telling me.    


  1. Sounds like he is making great progress!!!

  2. I am often in desperate need of hot chocolate. I'm so glad you had such good news today!

  3. Ooohhh, congratulations about the little gift 'in the oven'. When we were expecting the first baby after our medically challenged baby (major heart complications... hypoplastic left heart syndrome, 13years old now, doing very well), a friend of mine (who's middle child of 5 children was born with medical issues) said that she always felt that it was good for that little boy that he had a couple of younger siblings. He wasn't the doted-on 'baby' of the family and had a chance to learn things like patience and letting the younger go first and being gentle. The first couple of babies we had after our son we naturally thought about that heart defect and could it happen again.... but we really knew that if it did, we would still be blessed so much. We've had 5 healthy babies since then. My baby is 10 months old also and I can't deny that I've been thinking a lot lately about.... well, in God's perfect timing I guess. I'm very happy for you :-)

    Too bad Makayla couldn't go in with him... I think it's stupid too. Young people are treated like little children for too long in our culture. I bet he loves his sister so much.

    Christine (proud mom of 8 from Ontario)

  4. What a day! As always I have a few questions, please answer at your leisure or never if they are distressing. A baby that needs to be changed every thirty minutes-how do you protect his skin? What kinds of diapers, wipes, ointments do you use on his bottom? And more a question of logistics-does Mason go outside with the big kids? Thirdly, do you live near family in order to have a babysitter or do you rely on your ward? I ask because we have gone through two pregnancies here in Phoenix without family and have not felt comfortable enough to ask for outside help. It would probably be different if we didn't have six. Anyway, I was just curious about your babysitting options. Thanks for the Mason update-also, my son (9) who is reading over my shoulder would like to see some more wheelchair pics if possible. That is our favorite post:)

  5. Christine - Yes, that thought crossed my mind, that having a younger sibling will be great for Mason and us so we don't let ourselves treat him as 'the baby', so he learns some big brother responsibilities as he grows up, etc. And I know what you mean about the baby being 10 months old and beginning to wonder when another will come...LOL. This was our biggest spacing in a very very long time. A much appreciated spacing, but surprising.

  6. Katie great questions!

    For the diapering, in the beginnning Mason's skin was really raw - layers were eaten away. Nothing really helped Then he hit a crossover point where his pooping slowed and allowed him to heal. Now his bum seems to be doing much better and we just slather him in protecting creams the moment we notice and pink soreness beginning. We can't use cloth diapers because the creams/pastes destroy them, which stinks money-wise, but is nice on the laundry end of things. We use WalMart's Parent's Choice diapers, but have tried Huggies and Pampers as well. We did plain fabric wipes and water first. Best cream: desitin. Best paste for really destroyed skin: Ilex, covered with a heavy layer of vaseline.

    Mason does not go outside with the kids unless Mommy is going because right now he puts absolutely everything in his mouth and then chokes. It's also cold here so him being a crawler his body and hands get really cold really fast being flat out on the ground exploring.
    Do we live near family? Yes, but! Okay, this is a complicated answer. We live near a lot of family but the only persons we would leave all the kids with are my mom and her husband. Similar to you, it's really overwhelming for someone who isn't used to 7 kids.

    With that said, we now have a few people from church that we also have watch the kids when we need to, because my mom works and while she has a lot of vacation time, there are some days she simply can't get off. This is something that was really hard for me, accepting help (still is!). We have three sisters at church now who we feel comfortable leaving the kids with (at our house). One is my VT. She's known the kids a long time and generally we'll use her for a local appointment that won't be more than 2 hours. She is available while her 2 kiddos are at school. The next is a sister from the ward with 3 little ones in my neighborhood. She's done short and long appointments before and worked in daycare before becoming a mom so she's used to the chaos of lots of kids. ;) The third is a homeschool mom and sister from the other ward in our building. She is expecting their 4th and our families get together regularly for homeschool fun (book club) and just fun together anytime. She's done short and long appointments some too.

    So while my mom is the primary sitter we use for long appointments, we have a few options now that I simply had no choice but to get used to with all the medical appointments Mason brought. I want you to do something for me. Reach out and start making those connections in your ward to get a few people who can babysit for you. ((HUGS)). Start with asking them to come spend two hours with you and the kids so they can get to know one another and you can show them how your house generally works. Then the next time you go get some shopping done. It's really uncomfortable when we have lots of kids becuase we feel like we're overwhelming someone who doesn't, but if the shoe were on the other foot it would be different. If you could come watch my 6 bigger kids while I took Mason for appointments I imagine you would, despite the fact that it would double your kid load to 12. Am I right? And I wouldn't think twice about watching your 6 kids too. But thinking about asking someone else to watch all my kids still makes me worry they'll be overwhelmed when they are a parent to just 1 or 2 kids.

    And yes, I'll be honest, I still occasionally just take all 7 kids with me instead of asking someone to watch them. I still fight to let others help. It's a lesson I'm working on learning even after the last 10 months with Mason.

  7. Tristan-Thank you so much for allowing us all to peek in on Mason and learn and grow from him. From mothering insight to spiritual growth you have helped those of us who read this (and check far too often to see if you've updated:) ) to fathom the kinds of things that we believe we could never handle. You humanize a world that is scary and unknown to many of us, and I thank you for that.
    Ok, what is Ilex? Where do you find it? So funny about the babysitter thing. I know that the Sisters in my ward would help-and have offered never showing any hesitance about the number of my children. It is definately my problem. I thank you for the advice and will try to be less controlling about it. Really, some thoughts to ponder. Also, my oldest son said Mason has beautiful red hair. He, like me, is smitten with your little man.

  8. katie -
    I know what you mean about reading blogs to see what other lives are like! We've come in contact with an amazing little man who has Spina Bifida like Mason but also many other medical challenges (heart surgery at 6 weeks, paralyzed esophagus, and much more). His name is Aiden. His mom updates their blog occasionally (it's Journey with Aiden) but lately has been updating their Facebook page instead, Team Iron Aiden, and I read that with my husbands FB account. Here is the link: Simply amazing. They live about an hour from us and go to the same hospital, use some of the same doctors, so we've emailed back and forth.

    Ilex is a skin protectant paste. You can learn more about it here:

    We've bought it online through Amazon once and then through another medical supply company once. Not cheap but works wonders. I think you can order it through the company itself too.

    ((HUGS)) Have a great day! I'll be trying to get a video of Mason in his wheelchair loaded onto YouTube and posted here on the blog tonight, so check back tomorrow!


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