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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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!

Tuesday, October 23, 2012

I'm a Spina Bifida Awareness slacker

October is coming to a close and this is the first I've mentioned Spina Bifida Awareness month this year.  Shame on me!  I was inspired by a friend's blog today (go visit!) and decided I had to stop slacking and get on with the posting.

We were so blessed when I was pregnant with Gage.  I didn't really know that until after he was here and I joined the ranks of SB parents, but I fully appreciate it now.

I was with an OB group that I just wasn't clicking with.  There was nothing wrong with my doctor, but I just felt the need for a change.  Just before I solidified this decision, I had the Quad Screen.  I got a call from my doctor a few days later (REALLY weird) and she told me that mine was "positive" but didn't say for what, and that she was sending me to a specialist in Little Rock.  I had convinced myself at this point that it was a false positive, as is common with these tests, and that everything would still be okay.

Before we even went to the specialist appointment, I requested my medical records be sent to my new doctor, Dr. Richard Wyatt, in Little Rock.

We had the specialist appointment, which was brutal, and confirmed a spina bifida diagnosis, as well as revealing that my baby was a boy: Gage Anthony.  I believe it was later that week, or maybe the next week that I had my first appointment with Dr. Wyatt.  My old clinic had not sent my records, and he had not yet received the full report from the specialist.  I was basically unknown to him.

He sat down across from us in the exam room and listened.  And listened some more.  He made a call to the specialist,  who sent his report right over.  He asked to pray with us, which we accepted.  He told us that he hadn't had any other moms carrying babies with SB, but that he would learn.  He kind of mentioned termination, but it was clear that he didn't support that, and wouldn't recommend we pursue it.  The specialist had also mentioned it, but didn't recommend, push, or even mention it again after we let him know that termination was not an option.

This is not the experience of many parents who get the same diagnosis.  I have read countless accounts of parents being made to believe that their child will be a vegetable: unable to move, learn, interact with his or her environment, eat, love...They are made to believe that the humane option is to end the existence of this pitiful, worthless being.  They mourn the loss of the child, believing that having him or her will be cruel and impossible.  I am so thankful for those who find support and stories of wonderful kids and adults who happen to have spina bifida.  I mourn for those who do not, and believe the lies they are told.

Those babies and parents are the reason I advocate for spina bifida awareness.  I don't need you to send money, or have a fund-raiser.  I just need to you tell people about Gage, and Dryden, and Caleb, and Madi, and "Lil Bit", and any other kid with SB that you know.  They're awesome in their own ways.  They have WORTH, and they LOVE and they ACCOMPLISH things.  They bring JOY to their families and those around them.  NOBODY would be better off if they had not been born.  Uploaded with Snapbucket

Friday, July 20, 2012

Pizza Dough

This is another shameless recipe post, so I can pin my own blog on Pinterest, and always know where this recipe is.  My friend Tonya emailed this recipe to me over 3 years ago, and I still go back and search for it every time I make pizza

3 1/2 cups flour
1 cup warm water
2 tbls yeast
2 tbls honey
1/4 cup olive oil
1/2 tsp salt

I use my bread machine on the dough cycle.  I just put all the liquids in, then the salt, then the flour, and then I create a little "well" in the four to pour the yeast into. You're not supposed to let the yeast and the salt touch that's why I do the yeast last.  I make 2 of those large pizza's with this recipe but you could probably squeeze 4 smalls out of it if you try.  Enjoy!

Monday, July 9, 2012

It's giveaway season!

And you could win this new Combi Shuttle!  I just entered.  Don't get any ideas.  There are no more Fincher babies on the way. 

Just go here https://www.facebook.com/photo.php?fbid=10151022478999551&set=a.400738274550.173913.187940289550&type=1&theater and follow the instructions to enter!

Sunday, July 1, 2012

WIP- Texas edition

Last weekend, a friend came into town, and we met up at the park.  While there, I made Gage WALK across the bridge with the grate floor, without holding on.  He usually wants to crawl, or hold the rails with both hands.  He was not amused.

Gage spends 30 minutes on the potty, every other day.  During that time, he gets to play with my phone.  Here is what my hallway looks like from the toilet...

We have been seeing a lot of brown recluses.  I HATE spiders, and ones that can make your arm fall off creep me out even more.  So, I bought these glue boards to put in the dark and scary places where I find the spiders.  I put one behind the couch.  I caught an Evie instead.

I don't know how well you can tell it, but she was really stuck.  I had to drag her from behind the couch.  She had stepped on the glue board with her right foot, then got it stuck to the back of her left leg, so her right foot was stuck up off the ground.

I know this is a terrible picture, but it reminded me to tell the story.

I arrived at my in-law's house Wednesday night at about 11pm.  They live on a rural highway.  As I got to their driveway, I saw a car with its hazards on about 40 or 50 yards further down.  I told my father-in-law about it, because it seemed unusual.  We went ahead and got the kids in the house, and I went back out for our bags.  When I got to my car, I looked down the road again, and a set of headlights came on next to the one with hazards on.  It "sped" away...well, as well as a junker can speed away.  My father-in-law walked out of the house just as it did, so he heard it, too.  It was dark, so I couldn't really see what kind of car it was or anything.  So, it bothered my FIL enough to go check it out.  He drove down.  When he came back, he said that smoke was billowing out of the parked car, and that it looked to be a newer-model small SUV, like a Ford Escape or similar.  He called 911.  We went back out again, and the car began flaming.  Then it was really roaring and sparks and little explosions were happening.  The grass caught fire, and we started to get worried.  Then a cop arrived and we heard him yell "is anybody in there?!?" We were thinking "well, if there is, he's crispy-fried now." because it had been full-on burning for a while by then.  Finally the fire truck showed up, which is what the picture above is from.  The orange ball on the left is the car on fire.  The white light beside it is either the cop car blue light or headlights, and the orange and red dots on the right are the fire engine's lights.

SO, the reason I was taking the kids to the in-laws is because I went to Ft. Worth, TX for a Handwriting Without Tears conference that happened Friday.  I met my friend Sarah there, along with her family.  I REALLY wanted Tony to go, but he had to work every single day that I was gone.

So, on my way down Thurs, I stopped at my friend Amy's house to meet her new sweet baby girl, and to pick up the Baby Jogger City Elite that I bought from the DFW Craigslist that she picked up for me!  I am forever in her debt.  This thing is awesome!  It's plenty big for Gage, and pushes like butter.

Friday was the conference.  Homeschoolers, you NEED this program.  I can't wait to use this stuff with Gage.  I didn't find the Literacy and Math stuff so helpful for my OT practice as much, but it will be great for working with my own kids.

Friday night, we went down to the Stockyards for the rodeo.  It was a lot of fun, but VERY loud!

Lee Greenwood singing "Proud to be an American, beautiful palomino horse walking, then trotting, then cantering, then running around the arena with Old Glory...it was a recipe for tears.

Cowboy getting out of the way!

Saturday, we went to Sam Moon, then down to the Stockyards again.  We walked around and visited the shops, then watched the cattle drive.

I think my dad needs to move to Ft. Worth and do this.  He's perfect for the part.

I really enjoyed getting to hang out with Sarah and family.  Her kids are close in age to mine, and I felt right at home (and missed my kids!).  Her son held my hand for most of the trip, and said things that really made me wish Gage could have been there so we could listen to their conversations. I'm not posting pics of them because I haven't asked permission.

On my way out of town Saturday, I stopped at Grapevine Mills, which is a gynormous mall.  I stopped and asked a security guard what entrance to go in for the Sketchers outlet, because I wanted some of these.

They were cheaper than anywhere else I've seen them, plus, they were buy one get one 1/2 off :).  I've never been a big trendy shoe person, and I wasn't crazy about the Toms when they first came out, but I like these Bobs.

I went back to my ILs last night, and we went to church with them, and ate lunch there today before heading home.  Poor Gage is sick with a head cold, so I gave him some Benedryl before we got on the interstate.  He was asleep within 10 minutes, and slept the rest of the 3 hour drive home.

They weren't much better than awake after we got home.  I let them in the house, then let Katie in, then went to get our bags.  When I came back in, they were all laying on the floor just inside the living room.

Poor Gage.  I hope he feels better before PT tomorrow.