Welcome to our little space on the net! This blog is just about our family life, and began as a way to keep family and friends updated on what was going on with my pregnancy with our first son, Gage. We've since added Evie to our family, and I continue to blog about family life, car seats, spina bifida, and anything else that catches my attention.

The Kids

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Tuesday, February 17, 2015

A blessing and a curse

Gage had some braces.  They were the same style he'd had for some time, and they seemed to be  working just fine.  Over time, he developed a callous on the lateral side of his right foot, at the base of his 5th metatarsal.  His foot has a curved deformity and he tends to turn it over on the lateral side.  Basically he was putting all of his weight on the side of his foot and the brace wasn't enough to keep it from happening.

So, I tried to deal with this callous and I would shave it down every so often.  I didn't do that for a while and it got hard.  One day, it pulled away from the flesh underneath and made a little tiny blister on his foot.  Around this time, he also skinned the top of his foot pretty bad and made me think he might have cracked something, so I took him to the doctor.
You can see that it had turned red and blistered a little but that wasn't the focus at the time.  That boo boo up by his ankle was. This was Nov 5.


A few days later, the blister popped and it looked like this.  It still didn't look too bad.


Here is where we realized it was pulled away all up under the callous and it was deep.

And then it started to look like this. (Nov 21).  Went back to the doc and was put on antibiotics and a different way to dress it.  Also got a walking boot since he couldn't wear his brace but still needed ankle stability if he was going to walk.  It was huge and made him twist his knee in a bad way.  Ended up on a 2nd round of stronger antibiotics, and got referred to ACH's PT department for wound care.  The PT there cleaned it up, we got a protocol for cleaning and dressing it, and we were off, again.
This is my "it looks better" on Dec 22.  All that white is just callous, but the sore is still there.

We had SB clinic at ACH last week and I asked to have PT come up and look at it for me.  It was pretty much still the size as it is above.  This time, he got this cast, more dressing stuff, and instructions for him to be completely off of it until it heals.

Did you hear that?  OFF of it.  Anybody that knows Gage knows how hard that is.  The first day, I felt like I said "get off your foot" 100 times, but he crawls around now, no problem.  As is typical for him, I don't hear any complaints.  We change the dressing twice a day.  We have a borrowed adult wheelchair.  It weighs a ton and is hard to get in the Expy, but we're making it work.  His custom chair should be in this week anyway.  

So, the fact that he doesn't have sensation on that part of his foot is a blessing, because he doesn't feel that pain that should be there with such a big sore.  He doesn't feel it when I or the PT cut out the dead skin and scrub it.  It's a curse because this thing probably never would have happened if he had sensation.  It pulled away and we had no idea because he couldn't tell us it hurt.  

On a related note, we're actually excited about him getting his first chair.  I never thought I'd say that.  Gage walks well, and I'm so thankful for that.  This experience has showed us just how useful a chair would be.  Up to now, we've used a stroller for longer outings, but he's outgrown it, and I sold it.  It was getting interesting with the assumptions about this big kid in a stroller.  I guess "stigma" of wheelchair is a lot better than "stigma" of really big kid in a stroller.  I'm going to TRY to post about his new chair when it gets here.

Friday, October 25, 2013

Surgery number 8 in the books

Since this started out as a blog about Gage and our life with spina bifida, I guess I should update when something significant happens in that area.

I'll start with last week, even though we didn't realize it was significant at the time.  Last Monday or Wednesday, Gage was in PT and someone came to get me and said something about his nose.  I assumed he was having a nose bleed, which is normal for him, especially when the weather cools off.  When I got to the gym, they said he had just had a big gush of clear, non-mucousy liquid from his nose.  It was obviously a lot- all over the PT's scrubs and some on Gage.  He hadn't had a runny nose in the days before, and didn't in the days after.  We consulted Dr. Google and found that it could be a CSF (cerebrospinal fluid) leak, but decided to wait and see if it happened again before freaking out about a runny nose.

So this Tuesday morning, Gage woke up and told me he had a headache.  No biggie, here's some Tylenol.  Tuesday is a work day for me, and so I took the kids to their babysitter's house for the day.  I told her that if he was still complaining by lunch, to let me know...that with kids with shunts, you always worry about a malfunction if there is a headache and no fever.  Got to work and was almost done treating my first kid when I got a text that Gage had thrown up.  Not long after, another one saying that he was asleep.  Okay, time to worry.  In a crying scene, I found another therapist to see my 2nd kid, who had already arrived, and canceled the others that day, and left to get the kids.  I called my mom to meet me at the house to keep Evie.  I packed up some stuff at home and headed to Little Rock with Gage.  We picked Tony up from work, then headed to the ER at Children's.

When I first got him, I started to think I had over-reacted and it was nothing.  He was acting pretty okay.  Then he fell asleep in the car, and after we got checked in to the ER, got progressively worse with his mood.  He was telling nurses to leave his room, which, if you know Gage, is totally unusual for him.  He was impossible to calm after they put in an IV.  He had a head CT and a shunt series (x-rays) then we waited.  The doc came in and said that his ventricles looked large, but that the last scans she had to compare were from 2008.  By this time it was about 4:30pm so I quickly called Conway Regional, where Gage has been getting his MRIs since we began seeing Dr. Boop in Memphis for neuro.  The last one they had of his head (not just his spine) was from 2010.  Good enough, but how were we going to get them here?  This wasn't a trauma so they wouldn't use their system...whatever that was.  It was just about after hours and med records was closing.  The courier would basically have to wait til tomorrow.  The med records lady said she'd stay if someone could come by and get them, but I'd have to fax over a consent.  Done.  Dusty went by and got the CD, and came up to bring it to us.  Whew!  Those did show his ventricles were bigger, and surgery to replace the shunt was warranted.  The neuro scheduled him for Wed morning but said if she could get him in that night, she would.

And she did.  They got us admitted and in a room, and at about 8:30 he went down to the OR.  That wait is awful.  It drags and drags.  I deal by pretending I don't know what is happening down there.  Dusty stayed with us and helped to ease us a little.  Finally, at about midnight, Gage got back in the room.  Surgery went well.  We assumed it would be the catheter in his head that was blocked, as that's the most common, and we knew his was not placed well.  Turns out, it was the one going down to his belly that was blocked up and needed replacing.

The change in him was almost immediate.  He came back from surgery chatting.  As I got settled for bed (Tony went home with Dusty) Gage gave me a play-by-play of Wreck It Ralph.  He finally got settled and we tried to sleep.  He had trouble staying comfortable, oddly, thanks to pressure in his belly and full bladder.  We finally got that taken care of and he rested.  We got to come home Wednesday.  He was slow moving Wed, and had some more belly issues.  By Thursday, he just rested more, and today, he seems almost back to normal.

We were really pleased with just about everybody we dealt with at ACH.  There was 1 resident or intern or somebody that either didn't know what SB was, or didn't bother looking at his chart before he came in.  He was annoying.  Other than that, we loved everybody. Gage got visits from several friends, including his beloved Reesha (his PT), and fellow SB dad Matt, who also brought us breakfast.  We've been taking it easy at home, and hope to resume normal activity next week.

Thursday, July 4, 2013

Saturday, March 2, 2013

I want to live at Hogwarts


I have such trouble deeming something blog-worthy these days.  This trip was awesome, though.



 We left Friday, Feb 15 at 4:00 am, caravaning with the Lipp family.  We stopped in the Memphis area for breakfast, then headed for Dothan, AL, where we were staying the night.  We got to Dothan and checked in to our hotel.  Yeah, Dothan is a much bigger place than I had imagined, and everyone within a 50 mile radius was there to eat dinner.  We finally found a little Mexican place that didn't seem very busy, but it was obviously well above what they were used to.  Anyway, kids swam and we slept, then got back on the road in the morning.
At a rest stop in Florida
The house was awesome.  If you wanna go to the Orlando area and stay in a house instead of a hotel, I highly recommend this one.  The owner was easy to deal with and the house itself was awesome.  We were able to spread out and get comfortable.  It was great to have a kitchen.  With 5 bedrooms, the adults stayed down stairs and the kids all stayed up.  There is even a game room.  The drive to Universal wasn't bad at all.

Our first day in the park was Monday, and the high was right at 70 degrees, I think.  The crowds were the worst Monday, I think.

The gate to Hogsmeade
waiting in line



Gage's favorite attraction.  Tried to take the pic just as the engine's steam blew and Gage ran

in the greenhouse at Hogwarts
The rest of the week was upper 70s to mid 80s, and awesome.  I won't describe it day-by-day.  My kids rode anything they were big enough to ride.  They are adrenaline junkies.  Gage screams on the roller coasters, and Evie holds her hands in the air.  Gage talked to every character we came across, and Evie hid behind me.
Gru and the girls


Minion dance party at the end of minion training


Gage to Marilyn "It's so good to see you!!!"


I turned around and couldn't find him because the Hop bunnies had pulled him out into the street to dance


Petting her horsey


The castle at night
Hogsmeade a night

His favorite conductor

at Downtown Disney


One Fish Two Fish


Grinching the Grinch

Serious Black

Some of the talking portraits inside the castle


It was a long trip, but we had SO much fun.  I hope we can go back soon.



Wednesday, October 31, 2012

Happy Halloween!