Saturday, October 19, 2013

Do Not Go Gentle into that Good Nap

A guest post by Mr. Graff.

Today, I got to watch the boys while Icie went shopping.  Both of them were very obviously tired, and I was hopeful that they'd fall asleep so I could go play in the dirt (a.k.a. the garden).  Raeford is notorious for fighting sleep until the very last minute, so I went with one of the few things we've found that works for getting him to take a nap during the day: putting in a movie.  (I suppose it's debatable whether we're horrible parents for letting him watch tv at all or great parents because we found something that works.  Evenings are ridiculous when Raeford doesn't get a nap.)

When Raeford calms down enough to watch a movie, he usually enjoys snuggling right up next to someone.  It's rather nice.  He wasn't having any of that today though.  No cuddling, no laying down, no leaning, nothing that would suggest he might fall under the power of sleep in the foreseeable future.  He had a very defensible position on his corner of the couch, but the somnolent onslaught already left him numb and staring straight ahead.  I didn't have my phone handy for those early expressions of defiance, but I did manage to catch those last moments before Raeford finally succumbed.



His brother, of course, had no fear of going down.  He was absolutely sure he would rise again, and didn't even fight off the nap.  He saw sleep coming and stayed as happy as ever.  One minute he was sitting and playing.  The next, he leaned back and fell asleep, fist still raised in mid-cheer.


After giving Raeford some time to be sure he had left the land of the conscious, I rearranged him to be a little more horizontal.



It might not have actually made him any more comfortable, but I felt better.  It's noteworthy that he ended up in pretty much the same position (and state) as Joe.

Quietly, I slipped outside, got my shovel and rake, and started digging in the backyard...

Sunday, October 6, 2013

The Baby Cure-All


Joe was screaming all morning, and for a good chunk of the afternoon...
until Mr. Graff happened upon brilliance. 

Brilliance, in this case, looks like an old bed sheet sewn into a curtain, knotted in four places---two for hand holds, two to prevent escapes. Insert passionately upset 11 month old, and swing gently between legs, like so: 


Then reassure mother that baby is not being smothered as the cooing noises give way to sleep. Mother needed to peek at baby in the swing to be reassured. Joe, it seems, needed his feet up by his head. 


And out he went.



When Rae was little, well, more little than now, I believed sanity was bought with D batteries. His swing was the only place he would sleep, when he would consent to sleep---and as soon as it stopped, he popped awake. 

Mr. Graff would swing him in his car seat, or in hammocks made of lava lavas. 

Rae would shout, "WING, WING, WING!" when we passed a playground and want to swing for most of an hour. He still likes to swing.  Just not in improvised swings between Dad's legs anymore.

Joe never really needed to swing before now.  Usually when he's tired, he gets fussy for a few minutes and just goes to sleep.  I guess making improvised swings really is one of those parenting skills that transfers between kids.

Monday, September 9, 2013

New York, the extended version


New York turned out to be an adventure. I packed up the kids and went to visit a friend from college---it was super nice to have the luxury of spending time with her and I got a little bit more than just your average scenic tour. 

We rode on trains and subways for much of the day. Did you know it is hot underground? I'd always assumed that underground meant cool, like a cave. Joe even had beads of sweat on his little nose. We went into the city with six kids and a ducky pacifier and left with six kids. Not bad. 


 A quick run to Babies-R-Us the next day helped us find Ducky again. 

My friend taught Rae an important life skill, eating lollipops. 


Rae found and licked  all the dum-dums in her car later. 

The neighborhood pool has a "beach entrance", which means that it has a sloping gradient. Best. Invention. Ever. Joe sat in my lap in the shallow part of the water and Rae splashed around a few feet in front of me. 


Rae was nervous at first, 


 but then he warmed right up. 




Everyone got dressed up in aprons to help clean the kitchen. 


The water gun makes the outfit. 



This picture of Joe was taken just hours before.... 



we ended up here. 


What happened? Well, Joe was fine, and then he wasn't. 

We went outside to play on the swing set. Joe played happily in his infant seat, watching everyone. I picked him; he started fussing. His eyes were watery and then I noticed that Joe couldn't see. 

I told my friend we needed to go to the ER now. She helped me package up Joe and her husband stayed with the kids. We left in minutes. 

As we're driving down the road, she asks, 
"Why are we going to the ER?"
"Joe's condition can be genetic," I explain while crying, "if it is genetic, it is most likely Stickler's syndrome. He tested negative for Stickler's, but the possibility is still there and the geneticist told me to watch for signs of Stickler's. Stickler's shows up as a cartilage issue, retinal detachment is common. She told me to make sure that Joe was tracking objects everyday. If he stops, go the ER and get his retina reattached." 

We drove to a little community hospital, with a little ER that had never seen a baby with Pierre Robin sequence before. The nursed had to google it. 

The doctor, a kind and gentle man, told us that he was not equipped to handle this situation, but following my instinct, he found the (personal, nonetheless) cell phone number of the pediatric retina specialist in the nation. He called him and arranged for us to meet Dr. Chan as soon as we could drive down into the city. 

We drove down. Four eye doctors (we happened to have four of the top eye doctors in the nation) examined Joe and came to this conclusion: it was not his retina. In fact, his retina does not even have the malformations common in a baby with Pierre Robin's. Completely healthy. 

By this point (about five hours after the incident), Joe was interacting a little better. He still couldn't see to grab his ducky, but he was responding better to people and less frightened. And he had slept a lot more than normal. Each time he woke up from a nap, he seemed better. By the time I took the picture above (at our second ER of the day, around 8pm), Joe could see his ducky and move it in his hands, and he was mostly back to normal. 

Dr. Chan initially recommended that we go home and see a pediatric eye doctor. We repeated the story and as he listened to it, he changed his mind and sent us to another ER across the road to have a neurological evaluation done. 

Which lead us first to the trauma room (above) and then to this room (the next five pictures). 

Hospitals are fascinating places ---if you can ignore the reason that you are in them. 

We found such fascinating oddities as the hideaway toilet.


P.S. Not a subtle flush.  (The sign said "flush," so I had to try it...)

Joe was getting sleepy by this point and I was too... 
the pirate-costumed nurse asked if she could get anything for us, 
I asked for jello. 

"You're jazzing for jello?!" 

"Yes." 

She came back with two, which I happily enjoyed. 


When we finally got to our room in the pediatric wing and started bedding down for the night, I got the couch and my friend got the floor. I couldn't figure out why the nurses were letting my friend stay with me, but I wasn't about to argue it, either. 


Turns out, they thought we were gay. 

Welcome to New York. 


Joe gets breast milk through his g-tube. Not my breast milk, that ship sailed months ago, but through Eats on Feets, other moms in the area donate their milk to Joe. Throughout our stay, I kept getting meals fed to me. I finally learned that they assumed I was still pumping... 

Oops. 


Joe had a EEG put on his head. The video camera in the room watched him while he played and slept. If the incident was a seizure, they hoped to catch more seizure like activity within the next 24 hours. They EEG came back completely normal. 


(Joe loved this stacking toy. It lit up and sang.) 

The bandage on his head is covering up all the probes to monitor his brain activity. It's a big sock that ran down his back and hooked into the TV set on the wall. 


So, we went home. They chalked up the incident to "reflux" and now we have more specialists to go see. 

Wahoo, adventure. 




Saturday, June 22, 2013

Mud, Sticks, Leaves, and my little Boy

This needed to be published last Fall, but... I forgot and left it as a draft. 

Rae loves mud (sometimes), leaves (usually), and sticks (always). I look at these pictures and think he's changed so much since then. I look at pictures from a month ago and think the same thing. 

We played at the park and Rae found a mud hole to sit in and played quite happily until he realized that his leg was stuck in the mud. Here he's asking me to wipe the mud off. I said no. I love the patch of mud over his eye like a puppy dog. 



Another day with a stick. 


We went out to take family pictures at the park. Rae found sticks. 






Elder Cook came to our Stake Conference (which was awesome!) and Mr. Graff and Rae played in the leaves outside the building afterwards. 





I asked Mr. Graff why boys liked sticks so much. He shook his head and said his scouts do, too. 

Maybe they just never outgrow it. 

South Carolina

I think I love South Carolina. 

We went there to see Squid and Grandma Anna. 

This was our first trip since Joe was born. 

Mr. Graff planned our rest stops---places that were interesting and would let Rae run around. We stopped at a rock garden in Charlottesville first. My momma was proud of us filling her grandsons' heads with rocks. 

Rae, sitting on petrified wood


Rae loves to swing. Joe likes it, for a little while. 


It took some coaxing to convince Rae to go through the tunnel. 


But no coaxing to climb the cargo net. 


Yup, it's for 5-12 year olds. 


Anna took all of us to the River walk.



We used a onesie to cover up Joe's legs from the sun. He looked like a mer-man. 


Rae enlisted a (second?) cousin in pushing him around. 


Everyone loved the pond. 

Aunt Patty, making sure everyone is safe


Rae, rocking


And the obligatory baby-in-the-flowers-on-the-side-of-the-highway picture


And toddler in the honeysuckle picture


And the not-so-obligatory, but cool, toddler under the bridge picture


I'm glad Rae sleeps during road trips. 

He looks like a teenager here. 


 Something about this picture makes me happy. Mr. Graff all covered up and Rae not? Mr. Graff squeezed onto the very side of the bed? Rae needing to sleep right next to daddy? Something. 


The next few are Rae setting up chairs at church. All by himself. 





Joe's Sunday outfit


Sleeping with Auntie Squid




Rae and Squid playing


I like the look of pure joy. 


Here Rae is throwing his legs in the air. 


And Squid joins in. 






Awesome trip. Hope we get to go back soon. 

Maple Syrup Festival

  We went to the Maple Syrup Festival @Cunningham Falls State Park today. The weather was *gorgeous* and the crowds not horrifying.  We star...