Wednesday, December 28, 2011

And Now I Need A Nap.

Once upon a time, there was a Christmas.

There was a preschool program.

And a warm home all decorated.

There was lots of family.

And cute babies.

And children running to see what Santa brought.

And cute babies.

And fairy princesses, like Rapunzel.

There were sisters...

And cute babies.

And miracles. (Hello, kid who hasn't eaten since August!)

There were cute babies holding cute babies.

And did I mention there were cute babies?!

There were kids who helped cook.

And lots of togetherness.

And there were cute babies.

And now I need a nap.

Tuesday, December 27, 2011

Christmas Chaos

There is only one word to describe Christmas with a four-year-old and almost-two-year-old. Chaos. Well, and fun. Maybe there are two words.

I sure love these monkeys!

(Disclaimer: I'm not sure why Brooklyn was naked. Maybe because my grandparents wanted the heat and the fireplace going. And Savannah isn't trying to choke her sister... she's putting her arm around her. She doesn't understand that it doesn't go around her neck!)

Sunday, December 25, 2011

Sunday, December 18, 2011

Murphy's Law Might Get Renamed.

I think before my life is over, Murphy's Law might get renamed. To Lauren's Law.

Case and point? Friday night. Here is how it went.

The kids went to bed. Savannah got up because she had to pee (of course) and then again because she "lost" her blanket (the one I handed her as I tucked her in bed). Then the kids actually went to sleep. Around 11pm, I also went to bed. That is when things got interesting.

At 12am, Brooklyn rolled over on her feeding tube line, which made the alarm on it start beeping. I went in to fix it, and while I was adjusting her, she woke up and wanted me to hold her. To do that, I had to unhook her feeding tube. Sigh. I rocked her back to sleep and then hooked her back up, and went back to bed.

At 12:30 am, her feeding tube beeped again because she'd rolled over again. This time it was a quick fix. Back to bed.

At 1 am, Savannah got up to pee. She ran into a laundry basket sitting in the hall (even though the light was on) and the noise woke up Brooklyn. Repeat the earlier process.

At 1:45 am, Brooklyn's pump beeped because it was out of formula. Darren refilled it for me.

At 2 am, Brooklyn woke up screaming and tried to peel the tape off of her face. That required new taping. In the middle of the night.

At 2:30 am, Savannah got up and woke me up because she couldn't find the tag on her blankie. That I was able to fix without getting out of bed.

At 3 am, our smoke detector battery died, resulting in it chirping repeatedly. I'm not even kidding. Darren also fixed that.

At 3:30am, Brooklyn rolled over on her line again. I fixed it, she woke up, argh.

At 4:30 am, our alarm system announced that the back door was open. It wasn't, but the sensor had fallen off the door frame. That was kinda freaky. Darren announced that we were probably being punked. I was too tired to find him funny, at all.

At 5 am, Brooklyn's pump beeped again, and she woke up. This time I just said forget it, and unhooked her, and settled her in the recliner with me and a sleeping bag and finished the night out sleeping sitting up. Because you know, sleeping in my bed was oh-so-successful.

At 6:45 am, Savannah busted into Brooklyn's room and said "GOOD MORNING SUNSHINES!" waking us both up for the day.

Lauren's Law, I'm tellin' ya.

Tuesday, December 13, 2011

Its Beginning to Look a Lot Like...

Gingerbread houses take a certain amount of concentration...

And result in big smiles!

Monday, December 12, 2011

Baby Matches.

One of the things I love about this kid is how she surprises me.

Like when she brings me her baby, and points to her baby's face, and our box of medical tape. And says, "boo-boo." And points to her face.

She wanted her baby to match.

I may not be able to fix a lot of things, but that I could handle!

Friday, December 9, 2011

There We Went Again.

Well, it was that time of year (again!) and me and Miss B headed back up to Cincinnati Childrens this past week. Have I mentioned how much I just love that hospital? We've gotten the trip down to a record time of 6 hours, 15 minutes (with a short stop) so it isn't too bad. And we have a waiting list of people who like to accompany us (mostly for the location of the Cheesecake Factory close to the hospital, I'm sure). :)

On Tuesday, we saw the neurologist. We LOVE her. She was happy to see her "princess" as she calls Brooklyn and felt that while her tone is still too low, she has improved some in the past six weeks, showing that her brain is starting to heal itself and reroute through the damage. That is really good news. She also told us that her type of CP is diplegic CP, which mostly affects her legs. We discussed some things to be cautious about, some things to work on, and where we go from here. They were very excited that her seizures are under control except when she gets sick, so that is very good news.

She also gained three pounds on her feeding tube, so they were thrilled with that as well.

On Wednesday morning, she saw the team of developmental pediatricians who tested her progression in the various areas of development. Again, they felt like her legs were very weak and that her braces are very necessary to help her to walk safely. They agreed that she is globally delayed, but also that she is making some good progress. Her biggest areas of delay are her speech, gross motor skills, and of course feeding issues. They did give us the good news that her chromosomes all came back completely normal, proving further that this isn't a genetic issue and is all related to the CP.

Wednesday afternoon, Brooklyn participated in a video swallow study, where her food was dipped in Barium and then a series of x-rays were taken while she ate. A speech therapist, radiologist, and GI specialist watched her eat and drink different textures and flavors and observed how she chewed and swallowed. They determined that she has a delayed swallow initiation, which means that she retains food in her mouth too long and some of it can trickle down her throat before she closes off her airway to swallow, resulting in aspiration. It is probably due to low muscle tone in her mouth and poor tongue control, making it hard to eat efficiently. This is what causes her coughing, choking, gagging, and recurrent chest infections. Aspiration can be very serious and so this was a big concern for the feeding team to address.

We met with the feeding team on Thursday morning, and they were pleased to see a chunky baby in their midst. :) However, they were not too pleased with her refusing to eat more than a few bites and her swallowing issues that were present. They together came up with a plan to switch her tube feedings to nighttime only so that she will get hungry during the day, and continue her feeding therapy at home. They also made suggestions for how to help her remember how to chew, swallow, etc. They want her to maintain her weight using NG night feeds until March when we return to see them, and a decision will be made at that point as to whether or not she will require a G-tube (a feeding tube in her belly instead of from her nose to belly). An NG tube is not comfortable, but it is minimally invasive because it doesn't require surgery and can be very easily inserted and removed without too much risk. The placement has to be checked frequently (it can get displaced into the lungs) and the tape on her face can be irritating, but other than that it isn't too bad. A G-tube would be more convenient in many ways (no tape on the face, nothing shoved up your nose, etc) but it would require abdominal surgery, which has risks of its own. Obviously, we want to hold off and make sure that is necessary before the poor girl has to go through that. In the meantime, she'll get about 600 calories through her feeding tube at night, and hopefully consume 600 more on her own during the day. Her home health nurse will come out weekly to check her tube and her weight and make sure everything stays on track. Plan subject to change should Brooklyn do something crazy on us, of course!

After the appointment with the feeding team, we headed home through the beautiful snowy mountains!

Things got a little crazy after a while.

It was a very good visit though, and we are so glad to be home!

Thanks to Liz and Gram-B for all of your help on the trip... and thanks to Mimi and Grandad for babysitting Savannah!

Wednesday, December 7, 2011

Monday, December 5, 2011

Date 52: We Did It!

We finally made it through our 52-date journey! It took us closer to a year and a half than a year, but nevertheless, we did it. :)

Our final date (of the challenge, but hopefully not final date, bahaha) was a tailgating trip down to Charlotte for the ACC Championship Game. The only thing that could've made it more wonderful would've been a winning score from Virginia Tech.

We sure know how to tailgate!

The tickets for the big game!

Emily and her boyfriend Jacob were lucky enough to be our double date. ;)

Go Hokies!

After a dinner of turkey legs, ribs, fries, and sweet tea, we headed into the Bank of America stadium to our fifth row seats. It was an awesome night.

Getting home at 4 am and having bronchitis as a result of screaming in 38 degree weather for 3 hours? Totally. worth. it.

Go Hokies!

Sunday, December 4, 2011

Saturday, December 3, 2011