The Beckner Bulletin

Pajama Day.

2012-01-26T12:01:00.002-05:00

Big Sis had pajama day at preschool today.

And I must say that she looked pretty cute.

She kept saying, "We are wearing re-jamas to school! Isn't that silly?!"

We sure do love that silly kid.

An Officer and a Gentleman.

2012-01-20T20:16:00.002-05:00

Big D graduated from the criminal justice academy today!
After 12 very long weeks, he is fully certified and has his diploma in hand.

We couldn't be more proud of our officer.

And he was also the elected chaplain of the class.

Congratulations!

We are so proud of you!

Once Upon A Time.

2012-01-17T09:44:00.004-05:00

Once upon a time, a morning started out just lovely. There was coffee, a day off work, and some leisurely reading while the kids played quietly in the background. It was truly ideal.

And then.

If you are familiar with Mickey Mouse Clubhouse, you know at the end there is the "hot dog dance". And you also know if you aren't very coordinated, it might be a little tricky. And just like that the children were laughing and dancing to the tune of "hot dog, hot dog, hot diggety dog..." and then there was a bone chilling scream and hysteria and blood spurting everywhere.

And being the calm mother that I am, I took one look and yelled, "oh my gosh, we gotta go to the hospital!", producing further hysteria. Super mom right there.

And of course, even though normally I've gotten dressed and had two cups of coffee by 10 am, on this day I was still in my pajamas, makeup-free. And of course, even though we have a whole closet full of medical supplies, I was unable to find any gauze. Maybe because I was fervently praying that I wouldn't pass out every time I looked at my child.

So, I taped a folded-up paper towel to her head, and we rode down to the ER in pajamas, or what I like to refer to as ghetto-style, at approximately 80 miles an hour, with a 4 year old screaming at the top of her lungs, and her mom yelling equally loud "DO NOT MOVE THAT PAPER TOWEL!"

And we arrived at the hospital...and waited 4 hours... and then they asked me to remove the paper towel. At which time I noticed that the corner of the table had punctured through all of the layers of skin and there was something white and gooey under that. At which time I started to feel... sweaty... and the doctor kindly said... "You okay mom? You aren't looking so good." To which I responded something like "I'm good. Seeing spots. Whew, do you have a bed because I'm about... to... pass... ..... o...u....t...." and then I was in the bed next to Savannah. Super mom. But at least I made it all of the way to the hospital.

There were internal and external stitches... and an awesome doctor who sang princess songs... and then there was ice cream.

A week later, the stitches came out, but the wound was still rather open. So she had to have some steri-strips and band-aids for a week.

Which apparently is just fine if you have Angry Birds band-aids.

And now, two weeks later, it has healed up really well, with only a small scar. And we all survived our first major blood trauma. Hopefully there are no more. And hopefully if there are, someone more capable of handling bodily fluids is home. And has had a shower. Or can at least locate gauze. Or something.

Monday Musings.

2012-01-16T09:15:00.000-05:00

As I enjoy this last day before spring semester begins with its grueling master thesis project looming in my vision, I've spent the morning reflecting on how much our lives have changed in the past few months.

We went (thankfully!) from a time period where I thought we would never get out of the hospital for more than week to a blissful three months free from inpatient admissions.

A surgery was scheduled, and then subsequently cancelled.

And life, at least as much as it can be, is pretty "normal" at the moment. (Although, I rather doubt normal people go to therapy four times per week, but eh... its all about your perspective).

What makes me completely crazy is knowing that it can change faster than I can blink. And I have absolutely no idea what the future holds.

The reality of a raising a child with epilepsy is that you can have a really good month. Or two months. Or a year. And then your child can start having seizures and after an extremely long time of being seizure-free, you can find yourself whipping out a stethoscope, administering injections, and calling an ambulance. Just like that. Or your kid might never seize again. Most of the time, I just have to block it out of my mind to prevent further insanity. But its always there, lurking in the background. Like every time we plan anything in advance... I tend to think... can this be cancelled if Brooklyn gets sick?

Another thing that can make you kind of crazy is having a "spectrum disorder" where you don't really know how much your child will develop. I probably drive our neurologist crazy when I ask questions about what Brooklyn will be able to accomplish and what we should expect. She always smiles at me and assures me that we have no idea, and it'll be totally up to Brooklyn. And that makes me plumb insane. Because sometimes I think knowing would be better than not knowing at all. Will she ever walk without braces? Will she ever be able to run? Will she say more words than the few that she says now? And what about the future? Will she be able to graduate high school? Will she find someone who will love her in spite of her tendency to land herself in the hospital? I'd just like to know.

But then I was thinking... is that really different from any of us? None of us are promised to live to date the cute boy in high school, to dance at our wedding, or to hold our own sweet babies in our arms. The assumption that I'll graduate from grad school in May is just that... a hopeful assumption. Because in reality, I'm not guaranteed another day, another memory, or another milestone.

So maybe, just maybe, this sweet child is a reminder to her momma that we just need to take each day as it comes... to celebrate each moment... to treasure every accomplishment... to cherish each hug... and to live a life with no guarantees, and no regrets.

I sure hope that one day she learns half as much from me as I've learned from her.

The Craft Fairy Strikes Again.

2012-01-15T15:44:00.004-05:00

I've been busy these past few weeks. For some reason, I felt the urge to clean, purge, and redecorate. I'm not really sure what got into me. But the house sure is looking better!

I have a bathroom off of our bedroom that I think used to be a closet. At any rate, it is tiny and completely tiled in a Pepto-Bismol pink color. That doesn't leave a lot of creative license. But I think I managed. Here are the before and after photos.

Shower curtain before:

Shower curtain after:

Because the bathroom is tiny, it has NO cabinets, so I've always stacked my stuff on the back of the toilet. Here is before shelves:

And after $5 shelves from Target:

Rug before:

Rug after:

Ta-da! I like my little owl bathroom much better now.

Next, I decided to tackle the laundry room. I really, really regret not taking a before picture because you wouldn't believe the transformation. But just imagine a concrete room with nothing on the walls, no curtains, no shelves, no trashcan, and no rug. Just a washer, dryer, freezer, and piles of clothes everywhere!

And here is after:

I made this cute little sign following super easy directions on Pinterest.

Then... because I was still in the crafty mood, I made a little canvas button "S" for Savannah's room using spray paint, hot glue, and buttons.

And I didn't want Brookie to feel left out, so I made this for her room out of a painted piece of scrap wood, vinyl lettering, and hot-glued flowers.

And now its time for me to start classes again... so I won't be able to do anything fun until graduation. Come on, May!

Matching.

2012-01-13T20:21:00.001-05:00

Click here to see the results of months of therapy!

Wordless Wednesday

2012-01-11T06:37:00.000-05:00

Roll Tide.

2012-01-10T06:28:00.001-05:00

Our team made it to the National Championship!

To celebrate, we made our own personal pan pizzas...

Yum!

And then we cheered on our team!

Roll Tide!!!!

Bama fans sure have fun.

Roll Tide Roll! So proud of the new National Champions 2012!

I don't even have words.

2012-01-09T10:27:00.003-05:00

The other night, I was cleaning up the kitchen and heard lots of giggles.

I happened upon this.

I have no words, people. None.

Getting Crafty.

2012-01-06T11:13:00.006-05:00

I think the New Year has inspired me.

I'm not very crafty. But I've been introduced to Pinterest. And I'm addicted.

So last night, Savannah and I had a little crafty time. For Valentine's Day. A little early.

And if you want to do it too, here is what you'll need.

A Mason jar.

Valentines tissue paper ($0.97 at Walmart) cut into hearts.

Mod Podge.

And a cute supervisor. (Optional).

You paint the jar with mod podge. Don't worry, you can't mess up.

Then stick the tissue paper to it and smooth it out. Then top with another coat of mod podge to seal it.

Then let it dry, fill with valentines candy, add a votive, and voila! you have a Valentines Day candleholder.

Try to act impressed. This is about as crafty as I get.

Happy New Year

2012-01-01T21:26:00.003-05:00

Every New Year, it is a good idea to sit back, preferably with coffee, and reflect. And not make New Years Resolutions, because... lets face it... nobody keeps those anyway.

Its nice to sit back and survey the past year and regard both the good and the bad... and sometimes even the ugly.

And I think its nice to savor certain favorite moments, and to choose to let other not-so-bright-and-shiny moments be forgotten.

As I sat down this year with my coffee (some people prefer other drinks on the New Year, but let me tell ya people, coffee brings much more clarity) and surveyed the past year, I felt overwhelmed.

I like to think that I'm not normally particularly emotional, but 2011 brought a flood of emotions.

My baby turned one year old. She had over a thousand seizures. We had 5 hospitalizations. I learned how to check urine concentration, get a prescription compounded, monitor heart rates, and use a feeding tube pump. I now own an IV pole and a stethoscope, and my toddler has a closet full of medical supplies that get delivered monthly. If you scroll through my cell phone address book, you'll see about as many doctors, pharmacies, therapists, and home health nurses as you do friends.

My big girl turned four, and will be starting Kindergarten in the fall. She's learned to deal with life changes and unexpected challenges. She's dealt with separation anxiety. My heart realized how much she's been through the other day when we drove past the hospital and she said, "Remember that time you and Brookie were there forever? Well, more than once." 2011 does feel like more than a forever at times.

How does a mother's heart handle all of this? I wish I knew the answer. In the past year, I've cried (in public, with strangers even!), screamed, yelled, slept, lost sleep, ate a lot (not recommended), engaged in retail therapy (also not recommended), talked, and prayed. I feel like I've aged 10 years in the past year.

I also feel like I've been entrusted with an incredible blessing (two of them!). Having a special needs child has transformed my life. In some ways, it has been painful. I think anytime your heart loves, it is filled with hope. And when those hopes aren't realized fully, there are hurts. My heart hurts for a little girl who has endured so much and has such a long way to go. But in other ways, she has saved me.

Having Brooklyn has taught me that every small moment should be cherished. When you have an accomplishment, celebrate it. She's taught me that with hard work, expectations can be exceeded. She's also shown me that even the smartest people in the world can be totally wrong, and you should never let them make you feel inferior. When you have a voice, it is never wrong to fight to be heard. I've also learned that grace and humility can get you much further than yelling. And that when you have a bad day, sometimes you just have to let it go and try again later. And that life is never so bad that you can't smile.

Watching Savannah has also shown me so much. She has shown me that encouragement can really lift a heart. She has shown me that no matter how different, everyone needs a best friend. She's shown loyalty and helped me laugh amid the tears. Like when we were at the mall and some stranger was staring at Brooklyn's feeding tube, and Savannah snorted, "Why is he looking at us like that?" I replied that it was probably because Brookie had a tube in her nose and she sighed and replied, "That is how she eats. Anyway, he has glasses!" She's shown me that sometimes you just have to laugh and ignore the ignorance of others. I don't know what I'd do without that sweet, funny girl.

As the year has drawn to a close, and a new one has begun, I am tired. And I am overwhelmed. And I feel like I don't have any of the answers. But this I do know... I have been blessed beyond measure. And at the end of the day, when I get to tuck in a preschooler with a storybook and find the tag on her blankie and listen to her pray for ridiculous things like that her hair will start to grow pink... and then I get to rock her sister to sleep as she clutches onto my shirt and then settle her in her crib and kiss her sweet cheeks... this is what I know...

I wouldn't change a thing.

Happy New Year. I hope 2012 finds you every bit as blessed.

And Now I Need A Nap.

2011-12-28T13:44:00.008-05:00

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.

Christmas Chaos

2011-12-27T08:46:00.006-05:00

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!)

Merry Christmas!

2011-12-25T13:31:00.000-05:00

Murphy's Law Might Get Renamed.

2011-12-18T23:11:00.004-05:00

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.

Its Beginning to Look a Lot Like...

2011-12-13T07:55:00.000-05:00

Gingerbread houses take a certain amount of concentration...

And result in big smiles!

Baby Matches.

2011-12-12T19:46:00.002-05:00

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!

There We Went Again.

2011-12-09T14:12:00.004-05:00

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!

Wordless Wednesday

2011-12-07T09:38:00.003-05:00

Date 52: We Did It!

2011-12-05T16:13:00.004-05:00

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!

Little Moments.

2011-12-04T20:11:00.006-05:00

Would You Like a Cup of Tea?

2011-12-03T06:51:00.000-05:00

Blessings.

2011-12-02T21:38:00.003-05:00

Thanks Beth Simmons Photography for the pictures!

Tough.

2011-12-01T21:32:00.002-05:00

When I grow up, I want to be as tough as my girl.

Who smiles even with a tube up her nose and a pump strapped to her back.

I am so thankful for her sweet spirit.

This new tube might slow her down, but it ain't stoppin' her smile!

Wordless (Sorta) Wednesday

2011-11-30T11:27:00.000-05:00

Dear Doctor.

2011-11-29T22:56:00.004-05:00

Dear Doctor.

Before you judge me, I'd like you to imagine the view from my windows.

I'd like you to look at my tired face and realize that I couldn't sleep last night because in spite of the fact that I was exhausted, I laid there worried that my child was going to die one day and I'd look back and wish I had done something differently. CP may not kill children, but dehydration, aspiration, and seizures all can.

I'd like you to notice the sweat marks on my shirt and realize that while you have been very busy attending to other patients in this huge medical center, I've been sitting in the exam room walking, bouncing, singing, playing peek-a-boo, turning the tv and lights on and off... all while answering text messages from worried family members. For seven hours.

I'd like you to notice that while I haven't had time to eat in over 12 hours because I've been so busy with my child who doesn't feel well, I am a little overweight. Mostly because what gets me through the frequent hospital visits and the nights where I monitor breathing rates and measure urine output... is curling up on the couch with a bowl of ice cream and a favorite TV show.

I know that it looks like I'm having a terrible hair day, and thats because I have hives on my scalp from being so frustrated that my baby needs something... and I can't give it to her. That actually might be the most maddening feeling I have ever encountered... the helplessness.

Please understand that my heart is constantly divided... because one baby needs me a lot... and my older baby does too. One has physical needs.... and the other will probably have emotional needs from living through her sister's physical needs.

Dear doctor... please don't judge me if I seem overly emotional, dramatic, worried, or tense. Or if you think there are far sicker children than mine. That is probably definitely true, and I don't discount that for a moment. But this is my baby... and you have absolutely no idea the paralyzing fear that comes knowing that something is desperately wrong... and I have no power to fix it.

Thanksgiving Weekend

2011-11-27T20:56:00.004-05:00

Our Thanksgiving was wonderful and full of many blessings.

It began bright, early, and a wee bit chilly at the Drumstick Dash 5k!

Emily and I were two of 14,000 people!

We finished in 35 minutes. Emily could've run much faster, but she was sticking with me and telling me to hurry my tail up. You notice that her face isn't even red at the finish.

After the race and a shower, there was a lots of family time. My Pawpaw is a ladies' man!

And there was cuteness.

And tons and tons of food. Delicious food!

And then there was a Muppet movie, which I forgot to take a picture of, and then I went to bed super early to prepare for the most wonderful day of the year... Black Friday! 2:15 am alarm went off and I was one of the first 250 customers in the mall. Only 300-some odd days until I can do it again!

Then Saturday came with our favorite football games of the year. The Hokies played UVA, and Alabama played Auburn. Go Hokies! Roll Tide!

We decided to split the family when it came to being fans of particular teams...

All in all, I'd say Thanksgiving weekend was a huge success! We sure are blessed.

One Little Indian

2011-11-23T10:56:00.002-05:00

Savannah's school had a pilgrim and Indian feast... and her classmates were the Indians. They made their own costumes at school (they've been working on them for a few weeks!) and apparently my child only wanted pink feathers on her headress.

They did a little 10 minute program for the parents... but Savannah was more interested in socializing than in performing.

And this next picture, my friends, is exactly why I could never ever teach preschool. Out of sixteen kids, I think one is doing what she is supposed to.

We hope your Thanksgiving is filled with blessings!

Story Time.

2011-11-22T08:46:00.003-05:00

Once upon a time, there was a Queen who lived in a cottage with two little princesses (and the King, but he was at work at the time of the story).

The princesses were not inclined to nap that afternoon, so the Queen made them popcorn and they watched a movie of the Disney variety. When it was almost time to walk out the door to physical therapy, the oldest princess started to holler for her Momma Queen from the bathroom. The Queen walked into the bathroom to find unspeakable things that shall not be mentioned by said royalty that indicated an upset stomach of the sitting-on-the-toilet sort.

The Queen didn't want the baby Princess to miss her physical therapy appointment, and figured the... explosion... was a one-time ordeal... so she cleaned up and loaded the princesses into the chariot to go to therapy.

At this time, the oldest Princess, who is quite prone to dramatic story-telling, began to whine, "I don't want to go to therapyyyyyyy... my belly huuuuuuuuuuurts!" The Queen assured her that all would be fine, and she needed to just get through the next hour.

When a Princess is prone to drama... the Queen doesn't always believe the Princess.

But she should.

Because upon entering the therapy appointment, the Princess proceeded to empty the contents of her stomach... all over herself, the floor, the Queen, and anything else in sight. It was not at all princess-like... and there was all. kinds. of. drama. over that occurance.

The Queen had to leave the baby Princess with the therapist and drive the oldest Princess home to bathe her, tuck her into bed (with a trashcan nearby), and feed her ice chips while she listened to Taylor Swift on her CD player. The Queen Mother had to go fetch the baby Princess from the therapists' office.

Lesson learned: The Queen will not try to call the Princess' bluff when she declares that she is going to puke all over the place. Its most definitely true.

But never fear... Sprite, goldfish, and several Disney movies later... the Princess shall be just fine... and all will live happily ever after.

Thankful for Motherhood

2011-11-21T09:44:00.002-05:00

Today I'm thankful... for days filled with laughter, silly knock-knock jokes, wonder at everyday occurances, Taylor Swift songs, kissing boo-boo's, rocking babies, searching for unicorns, dressing up as fairies, having tea parties, and watching Princess and the Frog 87 times over. I don't know what I'd do without these crazy girls who make me scream, cry, smile, and laugh. I'm so thankful that I'm their Momma.

It All Depends On Who You Ask.

2011-11-17T21:57:00.003-05:00

Sometimes I think I've lost it. And I'm pretty sure most doctors would agree.

And the sad part is that I'm not even sure I care anymore. Does that just confirm that I've really lost it?

Brookie started out with a bad day yesterday. She woke up and had two seizures before 9:30am. I called the doctor and gave her a head's up, but we already had a weight check scheduled for noon that day, so we planned on seeing her then. In the meantime, I called her neurologist in Cincinnati to bring her up to speed and find out what the plan would be.

I get a little panicky when we are in this situation.

I can see Brooklyn headed down a slippery slope into seizure-ville, but she isn't technically there yet so I can't really convince any doctors to do anything about it, but I know she is going that direction. Because she has classic signs every time... she gets a glazed-over look in her eyes, she is unsteady on her feet, her eyes look weak and tired, and she is agitated over everything. And then she starts with the seizures and it all goes downhill from there. And then I kick myself for not doing anything when I knew it was headed that direction.

This time I decided I wasn't going to kick myself.

After she had the first seizure, I sent the pediatrician an email. After the second one, I called her and Cincinnati. Then we went to the doctor's office, where they increased her seizure drug and also added Ativan to keep her from going into "status" (one seizure after another where they don't stop... which is what put us in the ambulance in September).

I expressed a few doubts about the Ativan because Brooklyn has had a weird reaction to Klonipin in the past and they are in the same drug family, but Ativan is supposed to be short-acting and doesn't cause weird reactions.

I don't know why that statement didn't set off my warning bells.

Ativan doesn't sit well with my 21-month-old. 16 hours of sleep, followed by inability to walk, and extreme clingy-ness... I called the doctors office. Our doctor was out, so I spoke with the nurse practitioner that told me that Ativan can make kids sleepy, but try to hang in there.

I can deal with sleepy. But the crawling on the floor and screaming bloody murder until she puked? I cannot handle that.

So I loaded her in the car and drove to the pediatrician's office. Surely if they could see her, they would DO something about it.

Brooklyn screamed the whole way to the doctor, and the whole time in the waiting room, and while waiting on the nurse practitioner. She screamed through the first half of the nurse practitioner being in the room, and then calmed when they brought her a popsicle. I guess I should've thought of that...after the 87 things I'd already tried.

The NP went out in the hall to call our pediatrician, and I heard her say... "No... not inconsolable... I mean she is definitely cranky... but I got her to smile."

I couldn't help but be slightly irritated. The kid had broken blood vessels in her face from crying so hard. But maybe thats okay if she can smile? Sigh.

In the end, they switched the Ativan to Valium, and she seems to be better, but we'll see how it goes tomorrow.

Am I crazy? Do I expect too much of physicians when I want them to listen to me about my child? I think they think I am certifiably insane. And that used to make me really upset... but lately I don't even think I care. Seriously, are my expectations too high?

I went through CVS to pick up Brooklyn's prescriptions and they told me the cost. I was surprised, because usually her Medicaid waiver covers all of her prescriptions. I asked about it, and they said because she had Ativan the day before, it wouldn't pay for both...and the office was closed that they should call to dispute it. No big deal, I said, and forked over the cost. The pharmicist smiled and said, "You know what? You're a good mom." Puzzled, I kind of laughed. "You'd be surprised," he said, "how many people won't pay for the prescription if there is a debate with the insurance. They just let the kids be sick. You're a good mom to pay for it anyway even though the insurance should."

At least I got one good vote today. Just don't poll Carilion.

There Are Those Days.

2011-11-16T06:21:00.000-05:00

There are those days that you should really stay in bed.

Because if you get up, your four-year-old will want to take a bath in the middle of the day, and your toddler, who has already had a bath, will want one too. You'll tell her no, and turn around for two seconds to grab a washcloth for your four-year-old, and your toddler will dive into the tub... fully clothed and diapered. You'll have to actually bathe her after that. And have you seen what Pampers does when submerged in the bathtub? And then they will think they won the battle. There are those days you should just stay in bed.

We Are Having a Slow Month.

2011-11-15T11:21:00.004-05:00

Oh my goodness, ya'll. I cannot hardly believe that I haven't been in the hospital for a whole fabulous month with Princess B.

I should tell you that my house is clean and my laundry is caught up and that I've been getting lots of sleep. But well... my Momma taught me not to lie.

I will say this. I am more caught up than I've been in a very long time.

Embrace sloppy success, right?

I did enjoy celebrating my birthday this past weekend with the hubby (date 51!) before he started the Criminal Justice Academy. A Japanese dinner, a cupcake, and some of the Office on dvd... the evening was fabulous. And it wasn't spent in the hospital, which is always a plus around here.

Big D started the academy this week... rather unexpectedly... which is another tale in of itself, but anyway, he has spent the past few days sweating, vomiting (gross!), running, studying, and test-taking. And he has spent the evenings groaning, moaning, washing, ironing, starching, and polishing. It will be a long 11 weeks, but he is doing a great job!

I've been feverishly working to finish up this semester so that I can maybe possibly enjoy life for a month before starting spring semester. One 17-page paper done, the other in the works.

Savannah has been cracking us all up with her funny tales and silly sayings. I have the first parent-teacher conference of the year with her teacher on Thursday and I must confess that I am a bit nervous. Who knows what she has been saying about me. For example, yesterday at the dentist they turned on the Disney channel for her, to which she informed them that "My mom doesn't let me watch that junk after 10 am." Thanks, sweetie. Great honesty. Now we'll work on tact.

Brooklyn is a bundle of energy with an emerging personality. Her therapy keeps us running in all directions (4 days per week) and she isn't eating much right now so we are doing weight checks and labs too. Sigh. And we are keeping our fingers crossed because as delightful as the holidays probably are in the hospital, we'd really like to spend them at home, pleaseandthankyou. We are headed back up to Cincinnati in a few weeks for further testing and meeting with the developmental specialist, neurologist, and feeding team. After that, maybe, possibly, hopefully... we might get released to every three months visits. But I didn't say that out loud.

That is all that is going on in my house. We are having a slow month.

National Most Beautiful Superstar

2011-11-13T22:19:00.005-05:00

What a big title for such a little girl. But this girl worked hard for it, and is quite proud. And so is her Momma.

Savannah and I (along with a few others, including Aunt Em who made her hair look good all day!) spent the day at the Million Dollar Baby National Pageant. It is a natural pageant (no toddlers and tiaras makeup!) and they donate quite hefty amounts to benefit the March of Dimes. It was Savannah's first time to compete in the 4-6 years old age group, and her first time to compete on stage without her mom there to help. :) But she did an awesome job!

She wore a white gown and got very high scores.

And she got a perfect 100 score in swimsuit! (Disclaimer: I would never let her wear a bikini on stage... notice she is very well covered unlike her neighbor!)

She also competed in casual wear.

And outfit of choice.

This was the last event and she had definitely gotten over the tiny bit of stage fright she had in the beginning, blowing two-handed kisses much to the amusement of the judges and audience.

After a birthday lunch (Happy Birthday, Momma!), we came back for the crowning ceremony, where Savannah won Cover Model for her photo being voted the prettiest picture out of all of the contestants. Her face graced the cover of the program book.

She had way too much fun with her little friend, Kyah, to the point where she actually told the Emcee to hold on a minute so she could finish her conversation backstage. Only my child would ask the judges to hold on so that she could keep talking.

Kyah won the age division queen, and Savannah won the highpoint queen. What beautiful four-year-old buddies! I don't think the girls had a clue that they were each others' competition!

Savannah was crowned the National Most Beautiful Superstar, meaning that she scored higher than anyone in the entire pageant on beauty (gown + swimsuit)! That was the first win she has ever had on the national level.

The crown was a little too big. :) But this girl sure had a great time!

One Monthiversary!

2011-11-11T12:06:00.004-05:00

I always said if we made it a whole month with no seizures or hospitalizations... ever again... we would have cake. That hasn't happened in over a year.

Today, my friends, we had cake!

It might seem silly to celebrate the small things. But not when the small things might be all you get.

We aren't going to miss the small victories while looking for a larger one.

We are going to celebrate. And have cake.

And we aren't going to dwell on the fact that Brooklyn can't have her cake and eat it too...

We are just going to enjoy that we are one month seizure-free.

Happy One Monthiversary, Brookie! We are so excited for you!

Thursday Afternoon Tea

2011-11-10T19:02:00.002-05:00

Can't wait to see the rest of the pictures from our session at Beth Simmons Photography today!

Date Fifty: Roll Tide!

2011-11-08T08:36:00.003-05:00

We totally missed the one year deadline. It is looking like it is going to take 18 months instead. But can I just say that it has been a C-R-A-Z-Y eighteen months (ahem, Brooklyn, ahem)?!?! Nevertheless, we are not quitters. So we press on.

Big D has to work on my birthday, so we celebrated a week early. I told him that I wanted to watch Alabama beat LSU for my birthday. Apparently Alabama didn't get the message. But, the hubby did! He went out and bought himself an Alabama shirt (for a Hokie, that is a big step) and flew Alabama flags on his truck. Then we watched the game and ate birthday cake and drank coffee. It would've been perfect if we hadn't lost in overtime. Oh well, I'm still looking forward to the national championship rematch. ;) Roll Tide Roll!

SMO's

2011-11-07T18:28:00.002-05:00

Brooklyn wanted to show off her new SMO's. (That stands for supramalleolar orthoses, in case you were curious. I was.) Its not the most fashionable look in the world, but she is adjusting quite well.

The braces cover her entire foot and have hard plastic that go up under the foot and provide arch support and keep her toes from dropping. She is falling a LOT less!

You would think that they would slow her down since her shoes are two sizes bigger than normal, and the SMO's aren't light. But that is definitely not the case (she wouldn't even slow down to pose for a photo!).

For other moms that are on the lookout, I found these Nikes at Shoe Carnival. They are extra-wides and are two sizes larger than her original size... and they are working great. I did wait until I had reinforcement (Gram-B), coffee, and a less emotional state of mind than my previous shoe-shopping post before I attempted that again though. ;)

Catch her if you can!

So thankful!

2011-11-04T09:22:00.002-04:00

I'm thankful... that this is how I spent my evening yesterday. Popcorn, chocolate milk, two pajama-clad clean babies, Winnie the Pooh movie, lots of snuggles....

I'm also thankful that this all occurred following a perfectly normal lab report for Miss B... for the first time in a month! And that is SO significant for two reasons... first, it means that her liver has healed from the minor damage inflicted by her adverse reaction to the last seizure meds, and second, it means that she is tolerating the new seizure meds very well... and they are effective... so we really didn't want to have to switch!

So thankful for all of the blessings... for mercies that are new every morning... and for crisp cool mornings and pumpkin muffins and sweet little feet marching through the house at the crack of dawn. So, so, so thankful.

Cross It Off The Bucket List

2011-11-02T20:58:00.003-04:00

Having a crying meltdown on a complete stranger in Rack Room. Check.

Brooklyn got her leg braces today, and it turned out to be quite an ordeal. She was fitted for them exactly one month ago, and we've been rather impatiently anticipating the day that they would arrive. Because they are important for important things, such as walking safely.

In my head, I pictured us walking into the appointment at 2:00 and picking up the braces, and being done by 2:20 or so.

Hahahahahahahaha. This is me laughing hysterically as I reflect on how I thought things would go.

As it turns out, we arrived for our 2:00 appointment at approximately 2:03pm, and then waited about 10 minutes to see the practioner. Being the planner that I am, I had gone out the night before and bought her a new pair of tennis shoes that were one size bigger than what she already wore, because I figured these braces would take up some space, even though the practitioner informed me that was unnecessary. Let me just tell you that the practitioner don't know what he is talking about. But more about that later.

While we waited in the waiting room, Savannah proceeded to interview everyone with an artificial limb. Taking a curious talkative blunt child into that kind of place is just asking for it, I suppose.

We were called back to a room and then the practitioner came in with not the pink camo braces that we ordered, because apparently they weren't available, but purple and green ones. Like Barney. Super.

He proceeded to try them on, trim them, try them on again, etc. It was naptime. Savannah was laying in the floor singing a Taylor Swift song at the top of her lungs, Brooklyn was arching her back and informing everyone that she was "all done." I thought we were almost finished until it came time to wedge her foot with the brace on into her shoe. The one that was already a size bigger than necessary.

No amount of pushing, pulling, removing insoles, twisting, or praying would get those shoes on. I assure the man that I will just go buy shoes one more size bigger, and he tells me that he cannot sign off on the brace order until he has seen her walk in them, with shoes on. So I have to go get shoes. Right now.

So I bit my tongue, because I really wanted to inform him that he was the one who told me that bigger shoes weren't even necessary in the first place, but I smiled with all of the southern charm I could muster and told him I would be right back.

I drug the screaming toddlers from the building, piled them into the car, drove to Rack Room, went through 100 pairs of shoes, and finally the manager, seeing the big pile of shoes and probably hearing the screaming toddlers, asked if he could help me. I proceeded to tell him that there were no shoes on God's green earth that I could cram those braces into. There were tears and sniffling and some major awkward moments. Let it be known that Rack Room managers have no idea what to do with women who burst into tears over shoes... apparently that isn't covered in their training.

We finally emerged with what I refer to as clown shoes. Extra-wide, in 4 sizes bigger than what she used to wear. But they were the only thing we got those braces into. And we weren't going home without those braces.

We went back to the prosthetics place, waited another 45 minutes to see the practitioner, had him approve a sign off on the shoes, and emerged successful... three and a half hours after our original appointment time.

Three and a half hours in a prosthetics place with two toddlers and crying in Rack Room all in the same day. Cross it off the bucket list.

Party Animals

2011-11-01T11:05:00.002-04:00

Cutest animals ever? I think so!

Savannah enjoyed trick-or-treating, and Brookie enjoyed riding around in the car... and this is how we found her... before we even got to the neighborhood that we were trick-or-treating in. Poor tired little monkey! Hope you all had a Happy Halloween!

Not Me Monday

2011-10-31T13:47:00.003-04:00

My child did not decide she reallllly had to pee while I was photographing her dressed as a cow for farm animal night at church. Nope, not me!

These Kids Crack Me Up.

2011-10-30T11:07:00.000-04:00

Want to smile too? Click here.

I Want Candy!

2011-10-29T20:56:00.002-04:00

(How many of you have that song stuck in your head now?)

This weekend while Daddy worked, the girls and I enjoyed some pre-Halloween festivities. We went to a Harvest Party at church this morning, and then this evening we went to trunk-or-treat at the church where Savannah goes to preschool. Now Mommy is exhausted! :)

Brooklyn totally has the right idea about trick-or-treating. Her little legs get tired very fast due to her low muscle tone, so she rode around in the stroller under a blanket holding open her bag for candy. It doesn't get much easier than that, folks!

I sure do love my girls!

We even found Emma, who Savannah has trick-or-treated with every year since they were old enough to do it. A fairy and a chicken the first year, winnie the pooh and snow white last year, this year they were a doctor and a colts cheerleader. Possible future professions???

Then we came home, warmed up with some homemade potato soup, and the girls checked out their loot. And have I mentioned that it isn't even Halloween yet?

Hope your weekend was just as sweet!

Halloween is Grrrreat!

2011-10-28T08:31:00.002-04:00

Happy Halloween from my favorite preschooler!

(standing next to pumpkins grown in our garden!)

I thought she looked cute in her $5 Walmart costume, but apparently she ditched it as soon as she got to school. Oh well. She still had lots of fun at her party!

We are thankful for her wonderful preschool that makes the various holidays so much fun!

Brooklyn's First Haircut

2011-10-27T16:22:00.002-04:00

Once upon a time there was a girl who hated to wear bows in her hair, and her bangs started hanging in her eyes.

She had an awesome aunt who made her experience great.

And the finished project? Bangs in the front, but still got the curls in the back, while carefully avoiding the mullet situation.

Thanks, Aunt Em, for Brooklyn's first haircut!

Overheard at My House

2011-10-27T09:33:00.002-04:00

Daddy: "I brought you a surprise. These flowers are for you."

Savannah: "Wow! For me? I love them! Thank you!"

Momma: "You need to give Daddy a big hug and put your flowers in water."

Savannah: "I don't want to put them in water! I want to be able to carry them in my wedding."

Momma: "Well, they won't last that long sweetie."

Savannah: "Daddy, will you buy me more flowers for my wedding?"

Daddy: "Sure I will."

Savannah: "Okay, and make sure they are pink. Thank you, thank you!"

Blessed.

2011-10-25T21:48:00.002-04:00

I'm feeling exceptionally blessed tonight. And that hasn't happened a lot lately.

After a rather long day and a kind of depressing doctor appointment with little B, I headed to a support group meeting for special families. These are always encouraging to me and I really look forward to them each month. When I got there, I sat down next to the nurse that always deals with Brooklyn at the pediatric office and we chatted for a few minutes. Then a lady came in looking a little harried and frustrated, and we waved her over to sit with us. She kept telling me that she was a mess and she was sorry. She looked fine to me. Aren't we all a mess? I replied.

The meeting started and we enjoyed dinner and then went on to listen to a presentation on medicaid disability waivers. Brooklyn already has one of those, but I went anyway because I enjoy the camraderie. And I learned a few things too. Halfway through the presentation through, I noticed out of the corner of my eye that the lady next to me was shaking. I glanced over and she was sobbing. At this point, I wasn't sure what to do. I'm a huggy person, but I've come to realize that some people don't appreciate that all of the time. But I went with my instincts and leaned over to give her a big hug and a package of tissues I dug out from the bottom of my purse.

I asked her if she was okay, and she responded that they were about to lose their insurance, and that her daughter had special needs and she didn't know how she was going to pay her bills. She just kept crying and saying that these were the answers she needed. I left her my name and phone number and promised to help her with the application process if she needed it.

I went thinking I would enjoy a meal with people I shared things in common with. I had no idea that I would leave tremendously touched and thankful for a God who has always provided for my girl. I'm so incredibly blessed, and it is so easy to lose sight of that when the circumstances aren't so good (if I hear "brain damage" one more time this week I'm going to scream). But I'm learning (slowly) to find the positives even in the crazy moments... and I'm feeling very blessed.

Math Equation

2011-10-24T09:17:00.000-04:00

Girly Mom + Country Dad =

Change the Outcome

2011-10-20T10:59:00.003-04:00

Thats the slogan of Cincinnati Childrens Hospital. Change the Outcome. And it is what we are continually hoping and striving for... a change in the outcome.

We headed back up to Cincinnati on Monday for Brooklyn to see her neurologist and developmental pediatrician on Tuesday. Since we have spent 12 days of the last month in the hospital, they wanted to see her since they are the managers of her care. I had high hopes that they would find a quick fix that had been overlooked, but I'm afraid that wasn't the answer we received.

However, we prayed for answers, and we did get some.

Brooklyn's muscle tone was noted to be significantly reduced, unfortunately most likely from the excessive seizures she suffered that sent her to the hospital the first time. Sigh. This causes her to have difficulty walking well and also difficulty swallowing.

She also was noted to have multiple sensory processing disorders. This may have been present all along and just now becoming apparent because of her age, and it may have been exacerbated from the seizures.

The first sensory disorder is oral defensiveness. It is characterized by a preference for soft or pureed foods, gagging with a change in textures, difficulty chewing or swallowing, frequent choking, and resistance to trying new foods. Obviously, Brooklyn didn't act this way previously, but these disorders commonly associated with special-needs children often become prevalent around 18 months of age. Also, losing tone and having issues swallowing doesn't help matters.

There is no quick fix for this, but it will involve feeding therapy, appointments with a nutritionist, and GI specialist, and occupational therapy. It is a behavioral thing, but not something that can really be helped. The change in textures and flavors legitmately feels extremely irritating to her because of her hypersensitivity in this way. She will also continue with pediasure 3 times per day.

The second sensory disorder is proprioceptive dysfunction. This is one we have seen in Brooklyn from birth. It is characterized by seeking out jumping, bumping, and crashing activities, stomping feet when walking, enjoying bearhugs, roughhousing, tackling/wrestling games, grinding teeth throughout the day, dragging objects, jumping off furniture, climbing, high pain tolerance, etc. I've often said that Brooklyn should've been a boy because she is so rough, so this one fit perfectly. My eyes got huge when they mentioned the symptoms because I've asked multiple medical professionals why Brookie always grinds her teeth so hard. This couldn't have been more descriptive of our girl.

There is no quick fix for this either, but PT and OT will help with the process.

The answers aren't easy to hear, and the road will be long and filled with lots of hard work, but Brooklyn has been a fighter from day one. If I was half as tough as she is, I would have it made. I know that she can do it, and hopefully with the help of her pediatrician, Cincinnati, and therapists, we can change the outcome.

Making Memories of Us

2011-10-19T22:31:00.003-04:00

This week, we had to take Miss B back up to see her friends at Cincinnati Children's Hospital. More about that later. But while we were there, we decided to have some family time and make some memories together.

Darren wanted to take the girls to Bass Pro (read: Darren wanted to go to Bass Pro). The girls loved the fish displays.

They did not love sleeping in a hotel. Don't let the picture fool you. There wasn't much sleeping going on.

Today we took the kids to EnterTRAINment Junction, an indoor train display that spans 80,000 square feet. It was pretty cool. My favorite part was watching Darren climb into Thomas the Train with the girls though.

They also had a Halloween display called Jack-O-Lantern Junction.

And the kids got to get candy bags and trick-or-treat.

And decorate a mini pumpkin.

And then there was an interactive play area, perfect for getting out the wiggles before the long car ride home.

And did I mention the car ride was long? Add rain and an hour delay in traffic... and things got a little bit crazy.

But everyone traveled very well and we arrived safely home this evening. Just in time to sleep in our own beds, hooray!

The look.

2011-10-16T14:36:00.001-04:00

If a toddler finds a marker... and her mom takes it away...

...she might give you a death look. And you might think its funny.

Oops I Did It Again.

2011-10-14T11:35:00.002-04:00

Balancing acts are a delicate matter. Too much one way or too much the other, and everything goes bad. I've never been very good at balance. I either love something or I hate it. I'm either 100% committed, or I'm over it. I know what I want, and I'm determined to get it. My mother affectionately called me her strong-willed child. Sometimes thats a good thing. Other times it makes people want to run for cover. I think last week fell into the latter category.

I'm not very good at resting, waiting, or delegating. If I have something on my list, I want it done and checked off, effective immediately. Sometimes Darren and I argue, because when I ask him to do something, and he responds, "Sure, in a minute..." that translates to the same thing as "no" to me. I use the ATM at the bank to make deposits, because I don't like waiting for the teller to do it. That might make me sound extremely difficult, but allow me to defend myself a little bit.

When you give me a task, it will be completed. And probably in record time. I set imaginary deadlines for myself before the actual deadline, giving me a built-in cushion just in case something goes wrong. For example, I aced my midterm last week while Brooklyn was in the hospital, because I wrote it three weeks before that, edited it for a week, and then turned it in a week early. Just in case my kid was hospitalized again. Because you just never know what might happen. So sometimes being a bit overaggressive can be a good thing.

It all depends on the situation.

I would not want to be my child's doctor though.

I think the word patient is fitting, because when you are in a hospital, it requires a great deal of patience to be a patient. Or the mother of a patient. Or the doctor dealing with the mother of the patient. When labs are ordered, I want to know the results. When they say they are coming in to take out a feeding tube, and two hours later its still in there, I get a little stressed. When the doctor comes in and says the team is making rounds in 30 minutes and so I hold off on taking a shower, and then they don't appear until 132 minutes later... it doesn't sit well. And after 12 days in the hospital in the past month, I start to get a little bit mental.

And I might possibly have been a little less than gracious once or twice. Or daily.

I've been learning, or trying to learn, to wait. When I try to control things and manipulate things and understand things... it gets draining. And stressful. And I get exhausted. And edgy. I don't really think thats what God has in mind. I was reading yesterday in Isaiah 40:28-31, "Have you known? Have you heard? The everlasting God, the Lord, the Creator of the ends of the earth, doesn't faint or grow weary. There is no searching His understanding. He gives power to the faint and to them who have no might He increases strength...But they that wait on the Lord will renew their strength. They will mount up with wings as eagles. They will run and not grow weary, and they will walk and not faint."

That sounds a whole lot better than me trying to take everything into my own hands and then get stressed out when it doesn't go like how I want it to. And I'd even wager that the people around me might find me slightly more tolerable.

I got off balance. I tried so hard to be an advocate for my baby that I lost sight of waiting, patience, character development, and the God who is in control of everything. Deep breaths. I'm setting my eyes on Jesus... and not on my crazy circumstances. I think I'll be a lot calmer this way. You're welcome.

Happy Birthday, Darren!

2011-10-13T09:57:00.002-04:00

Happy Birthday to my hubby, who has been extremely supportive through the many ups and downs of the past year. Always there with a listening ear and a solid hug and a joke to make me smile, I couldn't be more grateful. He has pulled super-dad duty multiple times lately and helped to keep me from completely losing it more times than I could count. Hard-working, dedicated, funny, athletic, forgiving, thoughtful, and smarter than I could ever hope to be... we are so thankful for you, Darren! Happy 26th Birthday (and thanks for celebrating it late this year because you had to spend your actual birthday in the hospital with our sick littlest)! We love you!

Overheard at the Hospital

2011-10-12T12:32:00.003-04:00

Resident: So we are going to discharge Brooklyn today.

Momma: Okay, we want to go home, but she hasn't gained any weight.

Resident: I'm sure she will when she gets home.

Momma: Okay, but if she doesn't start to improve, who do I call? Because she is still coughing and choking when she eats, and she is only eating 2-3 bites at each meal.

Resident: She might just have a tickle in her throat.

Momma: At every meal?

(silence)

Resident: So, we are going to discharge you....

Momma: I really feel bad that I laid into that resident, because I think he was actually nice and it was just his counterparts that were being rude. He was just in the wrong place at the wrong time.

Daddy: Like... in your presence... anytime this week?

Momma: Why did you follow me out to the doctors' station?

Daddy: I was prepared to step in and defend them, if they needed it.

Momma: They're actions aren't defensible.

Daddy: I was thinking more along the lines of defending them from physical harm. I don't want to get sued. At the jail, we are trained to take a neutral stance between parties when a fight breaks out. Thats all I was prepared to do.

Doctor: Hi, who are you?

Savannah: I'm Savannah, I'm the big sister. I am not sick. Brooklyn is the sick kid. Not me. I feel fine. So do not come over here and nurse on me.

Friend: (Upon watching the team leave the hospital room....) Whoa! Thats intense! Its like you have your own Greys Anatomy, without all of the cute doctors!

Momma: (After the student nurse exited the room after trying 6 times to take Brooklyn's temperature in her ear without success...) Wow, I really don't think we are dealing with the A students today. I'm thinking they sent over the ones that needed extra credit!

Home again, home again!

2011-10-11T19:10:00.002-04:00

My goodness, after 5 inpatient admissions in 18 months, I sure hope we are out of the hospital to stay for a while! While we didn't get too many answers, I do believe we exhausted the usefulness of our local hospital.

Miss Brooklyn gave us a scare when she entered the hospital with liver damage and refusing to eat and drink.

We've been at the hospital so much lately that she thinks she runs the place.

(And she might do better than most of their residents!)

But with a change in medications and an appetite stimulant, she started to eat very tiny bites, and that was enough to send us home!

We're baaaaack!

2011-10-09T19:36:00.002-04:00

Its a Monday, Ya'll!

2011-10-03T11:15:00.000-04:00

Regression

2011-10-02T21:23:00.002-04:00

The last kind of regression I dealt with was multiple regression last spring semester in Research Methods II, and it was a pain in my rear. But this kind is worse. Statistical regression is a long process, but the answers are clean and crisp with exact probabilities. They tell you what choices you should make or what your chances are. I actually kind of grew to enjoy it. This I will never grow to enjoy.

As I type this with a splitting headache from stress, I realize that moments like this are without a doubt the most frustrating part of raising a child with special needs. One can nearly go mad from the questions in the quiet moments. Did I miss a sign? Did I do enough? Should I have been more insistent? Should I be doing something different now?

Brooklyn has been experiencing some regression. Since her bout in the hospital with the seizures, she has had trouble eating well. She puts forth the effort, but she chokes at nearly every meal. Her eyes water, her face turns red, and she vomits, usually on both of us. The poor girl has lost a couple pounds, and lucky for her she was already on the chunky side so no alarm bells are going off yet on her medical chart. But it sure isn't fun.

She also is having balance and coordination issues with walking. Her toes drag, making her trip quite frequently. Tonight she busted her lip, and that now matches her bruised forehead. And that happened while she was wearing her orthopedic shoes and being closely supervised. Its been a long week.

Overall, her muscle tone seems to be decreased, making her regress. The good news is that she has only had one seizure this week though.

Oddly enough, this all comes after seizures that are supposed to have a very low probability of inflicting any lasting damage. Although I am starting to think that perhaps when I hear the words low probability, I should just assume that it will indeed happen to Brooklyn, my sweet little child who had a low probability of being born early, a low probability of having a stroke in utero, a low probability of absence seizures, and a low probability of getting the chickenpox from the vaccine. You know what I mean?

I wonder if there is anything I should have done differently. I wish I had a medical degree. And a magic wand. And more coffee. Sigh.

Wordless Wednesday

2011-09-28T08:21:00.002-04:00

Brooklyn's Hospitalization

2011-09-27T11:17:00.004-04:00

Many of you have asked about the details of Brooklyn's most recent hospitalization. Some of it is a bit of a blur for me, but I will try to journal what I can recall. Basically, Brooklyn presents a very challenging little medical case. The best guess that we have as to why she got so sick was that her body had just gotten her seizures under control and then she got a virus, and it lowered her seizure threshhold. Her little system couldn't handle fighting germs and seizures at the same time!

On Saturday, September 17, Brooklyn slept until after 9am. When she eventually woke up, her nose was gross and her lips were cracked and bleeding, presumably from breathing out of her mouth all night. I called the pediatrician and made a sick appointment. While we were waiting on her appointment, she had her first seizure in two weeks. It was about 30 seconds long. She also refused to eat breakfast. When we saw the pediatrician on call, he said he thought she had a virus, but that he was going to go ahead and give her an antibiotic just in case because he didn't want to risk her having more seizures.

She continued to have several more seizures throughout the day, and around 1pm she started to act strange. She still refused to eat, and she started walking sideways and dragging her left leg. I called the emergency neurologist at Cincinnati, and he said to go ahead and give her another dose of her anticonvulsant, and if she had another seizure after that, I needed to administer her injection and call an ambulance. The reason for the ambulance was that she had never before had that particular injection, and a common side effect can be difficulty breathing. Since they didn't know how she would handle it, precautions needed to be taken.

I was really nervous about that part. I usually handle Brooklyn's challenges fairly well, but I was a mess. I knew I needed to stop her seizures, but I was so scared that she would stop breathing and it would be a result of something I had done, and I wasn't sure I could handle that. She had another seizure, but I decided to wait just a little bit longer because I was so scared. Then she had another within five minutes. So, I called 911. The dispatcher told me that the rescue squad was on their way, and encouraged me to go ahead and follow the directions from the doctors. I did, and Brooklyn took it like a champ. Her seizures immediately stopped and her body relaxed. She laid very still on the couch and I carefully watched her breathing. And then she started laughing. The emergency room doctors later informed me that the injection hits the same receptor as alcohol, which explained her reaction.

In the meantime, I explained to Savannah that some doctors were coming to take Brooklyn to the hospital to help her. She informed me that it was fine as long as the doctors didn't take her by mistake. Then she ran and hid in her room.

The rescue squad arrived shortly and hooked Brooklyn up to a heart monitor and pulse ox, and strapped her to a child's stretcher. We began our bumpy ride to the hospital.

My mom came and followed us in her car with Savannah in the meantime. Darren was at work.

We spent the afternoon in the emergency room, where Brooklyn's seizures started back up again. They gave her several more doses of antivconvulsants (more than twice what she usually got at home) and drew some blood to make sure her levels weren't toxic. Brooklyn continued to refuse food, and then she threw up. They decided to start an IV and admit her overnight for observation.

Sunday morning looked better, but throughout the day she grew worse and continued to have seizures. She had 4 that day. She smelled like medicine and continued to refuse food and drink as well. They started IV fluids to keep her from getting dehydrated, and decided to keep her overnight again since she hadn't improved.

Darren worked Sunday also, but then was off during the week. He held down the fort with Savannah and did preschool carpool, school pictures, lunch bunch, show and tell, etc. He referred to himself as on "super dad duty." He did a good job!

On Monday, they called Cincinnati to consult with the neurologists. That was her worst day. She was barely awake all day. She laid in the bed, limp and lethargic. At one point, a team of seven doctors came in the room and she did not wake up throughout the exam, even with them shining a flashlight in her eyes. She continued to refuse to eat and drink. She had 5 seizures. They did an EEG to make sure she didn't have any ongoing electrical activity in her brain, but it was normal. That evening, they decided to try and give her a new anticonvulsant along with the other one to stop her seizures. However, she had a rare hyperactive reaction to the medicine and began to scream and then laugh hysterically. She also tried to jump out of the bed and hit her head against the rails, all while laughing. She didn't fall asleep until 1 am, after pulling her IV out. We told them at that point that medicine couldn't be given to her again. They agreed, and said they would probably transfer her to Cincinnati the next day.

Tuesday came and there was talk of a transfer, but it would have to be done by helicopter and it would be both costly and complicated. It was hard to justify since her vitals were stable and she wasn't considered critical. She had 6 seizures that day, however. So, after much debate, the doctors decided to consult with the doctors in Cincinnati and carry out their orders at our hospital. The decision was made to place her IV back in her arm and start high doses of the IV anticonvulsant that she had seemed to tolerate well. They warned us that it would probably down out her appetite again but it should last less than 24 hours. They started the IV dosage at about 6pm, and the evening was rough but things leveled out pretty quickly after that.

The doctors were really hopeful that Brooklyn could go home on Wednesday when she ate a granola bar for breakfast, but her stomach wasn't quite ready. She threw up and only had two wet diapers and refused any fluids by mouth. They gave us two bags of fluids through her IV. She only had one seizure, however. Late that evening, she ate a few bites of mashed potatoes and then went to sleep.

On Thursday, Brooklyn woke up acting much like her normal little self. She drank an entire carton of chocolate milk and ate a poptart and a few bites of banana. They discontinued the IV and she continued to do well and remain seizure-free, so we left the hospital at lunch time to come home after almost a week! What a long week it was!

We are very thankful for the great team of pediatricians at the hospital who really put in overtime to make sure that Brooklyn was well taken care of. We are also thankful for the rescue squad workers who were great with her. And of course for our wonderful friends who kept Momma supplied constantly with coffee and food, and brought more casseroles than we can possibly eat to our house upon our homecoming! Brooklyn sure is loved, and we couldn't handle this journey without you all!

Unless You Are Beth Simmons.

2011-09-25T16:25:00.005-04:00

It has become nearly an impossible task to get a good photo of both girls together.

Case and point? Saturday afternoon.

Nearly impossible. Unless you are Beth Simmons.

Welcome Home, Brooklyn!

2011-09-23T15:13:00.002-04:00

Brooklyn showed signs of improvement and started acting like her chipper little self after six long days in the hospital. So, we had that IV taken out and headed home!

She waved goodbye and blew kisses to her nurses and doctors at the hospital, who she really bonded with, and we headed home. And that girl has been so glad to be in her own house! She's been running from one end to the other and chattering up a storm.

We sure are glad our sweet girl is feeling so much better!

Temporary Home

2011-09-21T23:03:00.003-04:00

This is my temporary home...

its not where I belong...

...windows and rooms

I'm passing through...

...this is just a stop...

...on the way to where I'm going...

I'm not afraid because I know...

...this is my...

...temporary home.

We are hoping Little B can go home soon! Thanks for all of your prayers!

Sick Brooklyn

2011-09-19T20:35:00.001-04:00

Brooklyn is currently in the hospital due to uncontrolled seizures. She also won't eat or drink. Prayers are appreciated!

Cutest Cook in the Kitchen

2011-09-16T09:12:00.000-04:00

Date Forty-Nine: Plan B Date

2011-09-15T09:08:00.002-04:00

The other night, we were going to have an at-home date. We were going to make dinner together, watch a little of the Office, and just relax. And then approximately 8 seconds after we put the kids to bed, the power went out. No kidding.

So, we got Chinese takeout, lit some candles, ate dinner and talked. It was what we like to call our Plan B date. It was kind of nice, although we were glad when the AC came back on five hours later! :)

Overheard at My House

2011-09-09T08:51:00.002-04:00

Momma: What did you have for snack at school?

Savannah: I had pretzels and raisins, but not everybody did.

Momma: Why not?

Savannah: Well, there is a kid who has algae.

Momma: What?

Savannah: A boy. He has algae. So he brings his lunchbox with his own snacks.

Momma: He has allergies?

Savannah. Uhm, yes, Mom, that is what I just said. Are you listening?

Daddy: Savannah, grab your cup off the kitchen counter. Can you reach it?

Savannah: Dad! I'm four years old. How do you think a four year old couldn't reach her own cup? You were just jokin, right?

Savannah: Gram-B has polly pockets at her house because they used to be Lizzy's.

Momma: You're kidding! Cool!

Savannah: Mom, I don't kid. I am a kid.

The Most Wonderful Time of the Year

2011-09-08T13:51:00.003-04:00

Savannah started Pre-K today and she was so excited that maybe I should be offended. I guess staying home with Momma just got far too boring as the summer went on.

But Momma was ready for preschool to start too! ;) Savannah had orientation yesterday and her teacher seems very nice. Then she went to the doctor and got her big kid shots. I thought that would be quite dramatic, but she was very brave and only shed a tear or two. It was impressive. I guess she is growing up!

I think Brooklyn caught on to Sissy's enthusiasm and wanted to go too. But I'm so not ready for that one to be in preschool (although next year will come before I know it!).

Savannah was especially excited that one of her best little friends from last year, Emma, was in her class again this year.

We are thankful for a smooth start to another school year. And for such a fun little pre-kindergartener!

Wordless Wednesday

2011-09-07T00:19:00.000-04:00

My name is Momma Bear. Hear me growl.

2011-09-06T07:25:00.006-04:00

There has been a rant coming on, ya'll. I can't decide if the world has always been filled with so many ignorant people, or if this is a new epidemic. But having a special-needs child has allowed me to view the world in a new light, and sweet mercy, that light has exposed a truckload of ignorance. And that ignorance brings out what my mom always called the "Momma Bear Instinct." I might be really really nice, but mess with my cub, and you'll meet Momma Bear.

So I present... 10 things you really shouldn't say to the parent of a special-needs child.

1. She looks so normal. How do you want me to reply to that? I've toyed with responses... thank you? You should've seen her yesterday? Oh, you look normal today too. The reality of it is... a special-needs child may not fall into our realm of normal as far as meeting milestones, but she is quite extraordinary. And she doesn't have to look abnormal (whatever that is) to make our struggles real. You'd probably be surprised how many "normal" looking people have major things going on inside.

2. Don't worry, she'll catch up. Did you go to medical school? Because we see multiple therapists and doctors, and they quite frankly aren't sure if she'll ever "catch up." And, if by some miracle she does catch up, it will be the result of countless hours of prayer and therapy, not because she just got lucky, so please don't discount that.

3. Are you sure she isn't just ignoring you? Yes, I'm sure when my child doesn't respond to me she isn't ignoring me. She can't understand the language I speak most of the time. Do you know what it is like to be in a foreign country and not understand the people around you? That is how my child feels every. single. day. And I've never met an 18-month-old that could keep up a charade for their entire life... that would be some serious talent. Sometimes I feel like the mom on Mr. Holland's Opus... wanting to scream that I just want to speak to my child. Your child might be ignoring you, but my child does not have the ability to understand me.

4. Any statement that starts with, "Well my child can't even do...". People feel compelled to insist that my child must be doing great with her one accomplishment because their normal child can't even do that. It makes me want to shake them. And one day I might. Because for every one thing that my child can do that theirs can't.... there are 100 things their child can do that mine can't. And every accomplishment in this house is fought for... prayed for... paid for... cried for... begged for...and cheered for. Please don't act like we got lucky because your child can't even do that.

5. I'm sorry. I appreciate this sentiment more than the others, probably, but I don't need pity, and neither does my sweet child. She has to work harder than other children, and we have more to deal with than typical parents, but parenting is a big job no matter how you slice it... and we all have challenges. But please continue to treat me like your friend, and don't feel sorry for me every time you see me.

6. Your kid rules the house and might just need a spanking. Actually, my child doesn't have the capacity to understand a spanking, and so if I spanked her, she would look at me like why did you just smack me? And I personally cannot handle that. I'd rather repeat the words "sit down" 1000 times while people stare than have my child think I hit her for no apparent reason. And we do adapt our lives to help her, so maybe she rules the house. Wouldn't you do anything you could to help your child too, especially if they didn't understand the world they live in?

7. I know exactly what you are going through. Chances are, unless you also have a special-needs child, you don't. And having a kid that has been sick for a week or two doesn't qualify you either. Because part of the enormity of the job of raising a special-needs child is that its a job that never ends. Its hard now, and it will be hard forever, and you can't possibly understand the weight of that until you've carried it. You have NO idea what its like to wake up and think... is it PT or Speech today? Or to actually know your way around the hospital, and have the phone number of the hospital operator memorized. Or to have a button installed in your house that will call the ambulance by pushing it. Need I go on?

8. I didn't invite you because I figured you were too busy with all that you have going on. I don't know how you do what you do. My life is hectic and crazy, but it won't change anytime soon, and I'd really like to still be invited to go shopping or attend a playdate. I don't know how I do what I do either, but if you were in my shoes, and did all that stuff, you'd need to go out and buy cute shoes even more. So please still invite us...we might move slower, but we aren't contagious!

9. Do you have any other children? I'm not even sure what this implies, but yes, I do, and she is "normal" if that is what you are wondering. Will that be all?

10. Do you agree with the doctors, because doctors get it wrong all of the time. Yes, I do. And I wouldn't drive over 700 miles to a specialty hospital every three months if I didn't agree. Or give up two hours of each week for therapy. Or spend countless hours looking into resources and reading about treatment plans.

Now, because my own mother has taught me to always be positive, I also present 10 things you should say to parents of a special-needs child:

1. I made two casseroles for dinner today. What time can I bring one by for your family?

2. I don't know what to say, but I love you and your precious child.

3. Sounds like you are doing a great job.

4. You encourage me.

5. I know your child had an appointment today, how did it go?

6. How are you doing? (And really listen to the answer.)

7. Lets have a playdate. What works best for you guys?

8. Drop your other children off here on your way to the next doctor appointment.

9. Those people over there must think your child is gorgeous because they can't stop staring! (Or any other comment to stop the staring. I saw a funny t-shirt that says, "If you stare long enough, you'll see me do a trick.") We deal with the staring all of the time, and its nice when someone else has our back.

10. I'm praying for you guys.

Please, please be sensitive to those around you with special-needs children. They don't want your sympathy, but a little sensitivity never hurt anyone. A little insensitivity, on the other hand, can cause a world of damage. And maybe even a blog rant. ;)

Mission Accomplished

2011-09-05T08:33:00.002-04:00

After six months of intense speech therapy, Brooklyn has accomplished her first goal! She can now correctly identify basic body parts on a daily basis. Click here to watch and see. Hooray!!! Good job, Brooklyn!!!

Topsail Island Vacation 2011

2011-09-03T15:49:00.008-04:00

Well, Irene threatened to ruin our long-awaited summer vacation, but she was unsuccessful. In fact, because our beach house was flooded when we arrived, we got upgraded... to the house where many interior scenes from the movie "Nights in Rodanthe" were filmed. Being the Nicholas Sparks fan that I am, this was a highlight for me.

The kids loved the beach, although Brooklyn does not do very well out of her home environment. (Read: Mommy and Brooklyn got up anywhere from 6-9 times each night.) The weather was perfect for the remainder of the week, and other than a few shingles missing and going without cable the first day, nobody would know Irene's fury had just passed through hours earlier.

We ate too much, played a lot, and came home with peeling noses. It was perfect.

So without further delay, I present just a few of the pictures taken during our fabulous vacation.

Happy 4th Birthday, Savannah!

2011-08-31T20:47:00.003-04:00

At 4 years old, Savannah is imaginative, outgoing, funny, silly, smart, and adorable. She laughs easily, plays hard, skips naps altogther now, loves her family, likes to boss everyone around, sometimes picks on her sister, likes to pick out her own clothes, enjoys swimming, and doesn't really like to eat much of anything. She enjoys barbies, dress-up games, making her own bed, going to preschool, and playing outside. She does not like to wait, go to the doctor, sleep, miss out on anything, or eat vegetables. We sure love our babycakes to the moon and back!

Saturday Smiles

2011-08-27T11:35:00.002-04:00

God gave me you for the ups and downs.

God gave me you for the days of doubt.

For when I think I've lost my way...

And there are no words left here to say, its true...

God gave me you.

Eighteen Months Old

2011-08-25T08:33:00.004-04:00

My baby is officially halfway between one and two! I know I say it every month, but time really flies. Brooklyn has found her little toddler attitude this month. She is a pouter, much more than Savannah ever was. When she doesn't get what she wants, she lays face-down on the floor and wails. It would be quite comical if it wasn't so bad. She wants to do things independently and wants to imitate everything Savannah does. She is quite mischevious.

She started using two new words this month, "go" and "more". I love it when she says "more" because she has quite the southern accent, pronouncing is "moe". She also is using the sign for "eat" on occasion. She is also starting to nod "no" and "yes" appropriately, although sometimes she starts nodding one way and then changes her mind and shakes her head. :) It has been fun to see her do a few new things.

Favorite toys in this house are Barbie and baby dolls in the baby stroller. The girls love playing with them, and Brooklyn loves to imitate Savannah pretending with them. Brooklyn is also quite attached to her blankie, which she refers to as "buh-buh" and likes to drag it all around the house with her.

Brooklyn has just become aware of her ability to entertain people and will do something over and over again for a good laugh. She is forever affectionate, which her Momma thoroughly enjoys. Her joyful spirit is a continual encouragement. She has proven once again this month that she is a hard worker and has a fighting spirit. She is such a trooper.

We sure love this rotten little girl, from her chunky little legs to her curly blonde hair.

Happy 18 months, sweet toddler!

Thank You

2011-08-22T23:21:00.002-04:00

Thank you all so much for the overwhelming support and love that you've bestowed upon our family for the past week. I just copied and pasted many of the comments and emails into a Word document so that one day I can show Brooklyn just how very loved she is...even by strangers we haven't even met. We are adjusting, loving on our girls, and claiming the promise that God is good, all of the time. He has given such peace, strength, grace, and sustained us during this rollercoaster of a week. Thanks for being patient while we process, absorb, research, and recover. Regular blog posts will return very soon! :)

Isaiah 43:1-2, 7, 11, 18-19
"Fear not: for I have redeemed you. I have called you by name, you are mine. When you pass through the waters, I will be with you, and through the rivers and they will not overflow. When you walk through the fire, you will not be burned. I have called you by name, created you for my glory. I have formed you. I have made you. I am the Lord, and beside me there is no other. Remember not the past, or dwell on the things of old. I will do something new...I can make a way in the wilderness and rivers in the desert."

Cincinnati Zoo

2011-08-19T09:31:00.004-04:00

Cincinnati Children's gave us free tickets to the zoo! (Thank you so much!)

Savannah was seriously pumped about this.

We thoroughly enjoyed it... what a nice place!

The highlight of the day for Savannah was definitely getting to feed the giraffe.

Brooklyn wasn't quite as interested, partially due to her age and partially due to being under anesthesia that morning. But she was quite content relaxing in her stroller.

The most amusing exhibit award definitely goes to the gorillas. So much personality!

We had a great time at the zoo!

Cincinnati and Cerebral Palsy

2011-08-18T08:16:00.004-04:00

As many of you know, Brooklyn went to Cincinnati Children’s Hospital this week to see a team of doctors and therapists for diagnostic purposes. While she has had continuous symptoms since around 4 months old and began therapy and seeing specialists here at 8 months old, they have been unable to reach a diagnosis where we live. Upon recommendation from our pediatrician, we packed it up and made the 7 hour drive to Cincinnati on Sunday.

The trip was long, the tests were no fun, and we returned home exhausted. But we have answers. And we LOVE Cincinnati Children's Hospital!

On Monday, Brooklyn had MRI and MRS scans of her brain done under anesthesia. They also drew blood for lab tests while she was unconscious (thank you!).

On Tuesday morning, she got up at 4 am for a sleep-deprived EEG. The EEG is a painless procedure but is no fun for a girl who does not like things stuck to her head. Fortunately, we had a great team who got the procedure done quickly and without incident (but not without a few tears, sadly enough).

Tuesday afternoon, we met with a team of neurologists. We were at the hospital from 3:00pm until 7:30pm... they were very serious about spending quality time with our girl. They observed her playing, walking, babbling, looked over her medical history, read us results of testing, did a physical exam on her, checked her reflexes, measured her head, etc.

She may have gotten so bored that she invented her own game with the empty laundry hamper... pushing it around the doctor's office.

On Wednesday morning, Brooklyn met with a speech pathologist who assessed her speech and feeding skills and made recommendations for future treatment.

The doctors and nurses at Cincinnati Childrens were AWESOME. We were so pleased with every single professional that we dealt with. They were kind, compassionate, thorough, patient, and explained things extremely well. Even the parking lot attendant stopped to ask how we were all holding up as we exited the hospital on Tuesday. Our experience there could not have been any better.

In three days, we received answers that we have been seeking for almost Brooklyn's entire little life. They diagnosed our sweet girl with cerebral palsy, with the complication of associated epileptic seizures. If you are like me, you probably don't know much about cerebral palsy, and you might picture a child in a wheelchair and wonder how that could fit with Brooklyn.

You can keep reading for a summary of the information we received. Granted, it is a summary, but it is still rather lengthy. You've been warned.

Cerebral Palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development. It is not genetic or hereditary.

CP is caused by damage to the motor control centers of the developing brain and can occur during pregnancy or childbirth. Typical causes include problems in intrauterine development, birth trauma during labor and delivery, and lack of oxygen to the brain upon birth. Between 40-50% of children with CP were born prematurely. Because premature babies have underdeveloped organs, they are more susceptible to brain damage.

As they explained to us at Cincinnati, Brooklyn most likely had an intrauterine stroke that led to her premature delivery. Because she was tiny and her lungs were underdeveloped, they could not get enough oxygen to her brain fast enough. Anytime that your brain is deprived of oxygen, damage occurs. We are fortunate that we were surrounded by a fabulous NICU team who was able to keep the damage to a minimum.

All types of CP (and there are several!) are characterized by abnormal muscle tone. In Brooklyn’s case, her tone is abnormally low, giving her a slouchy/floppy appearance, slower reflexes, and coordination issues. Some classic symptoms are unsteady gait, problems with balance, sensory issues, etc. CP symptomatology is quite diverse and can range from clumsiness on the mild end to severe impairments on the other. Fortunately, right now Brooklyn falls closer to the milder end of the spectrum.

Resulting movement difficulties can also be accompanied by disturbances of sensation, depth perception, communication ability, and sometimes cognition. It can also be accompanied by epilepsy in 40% of children with CP. Brooklyn falls into that 40%.

Symptoms of CP are typically first noted when the baby is 6-9 months old and begins to mobilize. Asymmetry of limb usage and/or gross motor developmental delay is typically noted. Other symptoms noted can be epileptic seizures, communication disorders, sensory impairments, and learning disabilities. Brooklyn had all of those symptoms.

Speech and language disorders are common in people with cerebral palsy. Due to abnormal muscle tone, control of the oral-facial muscles becomes quite difficult. Also, feeding, biting, and chewing are sometimes difficult tasks as well. While in Cincinnati, we learned that Brooklyn does not chew or swallow properly.

CP is typically diagnosed through a physical examination and detailed history of the patient. CP has no known cure, but it can be treated. Treatment for CP is a lifelong multi-dimensional process focused on preventing the brain damage from prohibiting healthy development. Because the brain is not concrete in its development up until approximately the age of 8 years old, early intervention has proven quite successful in milder cases, such as Brooklyn’s. The brain has the ability to reorganize and reroute many of the signal paths that have been affected by the damage, and the earlier it has help in doing that, the better the prognosis. Treatment in Brooklyn’s case so far has included physical therapy, speech therapy, and occupational therapy. In addition to continuing those therapies, Cincinnati would like her to begin anti-seizure medications and feeding therapy (she eats well but chews and swallows incorrectly, choking quite often).

The prognosis for CP varies greatly depending on severity. The intellectual ability of the child is often not known until they enter school, and can vary from genius to impaired, just as in the general population. The ability to live independently also varies with severity, and is more likely in cases where the person can ambulate and self-feed, both of which Brooklyn can do already. In most cases, people with CP have a normal life-expectancy. Many go on to become successful spouses and parents.

All in all, cerebral palsy doesn’t always cause profound impairments. Some children may require therapy and be slightly disabled, while others may be confined to a wheelchair for their entire lives. We are quite fortunate that Brooklyn is on the mild end of the spectrum. We don't know yet what the future holds for her or what she will accomplish. She will be in physical therapy for the rest of her life. She has, however, already exceeded expectations, and we are hopeful that will the proper medical care, she will continue to do so.

Yes, we are sad. Yes, we will struggle with this. But we are truly confident that God has a plan for little Brooklyn. And I have honestly seen God's heart through her more clearly than ever before. He has repeatedly worked out even the smallest details in taking care of her and guiding this journey. This is the end of the seeking chapter, and the beginning of another chapter entirely. But God is good, ALL the time. Even when facing a scary diagnosis. He is still good. And He loves Brookie even more than we do. Our prayer is that she turns the world upside down for Him one day.

Thank you to the awesome doctors and nurses at Cincinnati. Thank you to Cincinnati Children's Hospital for the free tickets to the Zoo. Thank you to our friends, family, and church family for your awesome support and prayer. Thank you to Gram-B for driving, and to Mimi for entertaining. I could not have made that trip without two grandmas! Thank you to Mariott for the discounted rate and for accomodating us. And thank you to our pediatrician and the team of therapists here who got her started on therapy so early and pushed us to keep seeking answers. Thanks to all of the other people who I'm sure I've forgotten in my sleep-deprived state. We were truly overwhelmed by the love and support we received, and are humbled and thankful. We love you all, and appreciate you loving our girl too. This is a new beginning. Please continue to pray for Brooklyn and love on her. Your support is invaluable.

Date Forty-Eight: Cascades

2011-08-13T07:24:00.004-04:00

Date forty-eight was the hubby's turn to plan (I don't think he is quite on schedule for planning as many as required, but anyway...) so we headed to his favorite Mexican restaurant up the road in Blacksburg.

Then we kept on driving to the Cascades and began our hike.

The entire hike is about four miles and its not too challenging, which I can appreciate. I did, however, still complain about the exhaustion of my leg muscles. I'm just not a hiker.

Big D, on the other hand, needs to be on man vs. wild.

I like to think our differences compliment each other. I'm so un-coordinated that I make him look awesome. Right?!

There were lots of beautiful sights along the way... and two snakes... that we saw.

And then we rounded the final corner, and the view was breathtaking.

The Cascades is a 66-foot waterfall, and its gorgeous.

The coolness was refreshing.

The power of the rushing water left me in awe.

And I thoroughly enjoyed watching D attempt to walk across the slippery rocks. I was quite content to just view that portion of the day rather than participate.

After hanging out at the waterfall for a bit, we headed back down the mountain to pick up our kiddos.

Hiking the Cascades = highly recommended!

Strong Enough

2011-08-10T08:52:00.003-04:00

As our trip to Cincinnati Children's Hospital is quickly approaching, my emotions have been a roller-coaster ride. We will get answers in the next week, and they will range from bad to potentially devastating. How does one prepare for that? I'm not sure I'm ready.

As I was riding in the car the other day, I heard Matthew West sing "Strong Enough."

You must... you must think I'm strong.

To give me what I'm going through.

Forgive me, forgive me if I'm wrong.

This feels like more than I can do...on my own.

I know I'm not strong enough to be

Everything that I'm supposed to be

I give up.

I'm not strong enough.

Hands of mercy, won't you cover me?

Lord, I'm asking you to be

Strong Enough...for both of us...

Well maybe, maybe thats the point.

To reach the point of giving up.

Cause when I'm finally, finally at rock bottom,

Thats when I start looking up...

And reaching out.

I'm broken, down to nothing.

I'm still holding on to one thing: You are God.

You are strong when I am weak.

I can do all things through Christ who gives me strength.

I don't have to be strong enough.

A sleepless night found me giving up and giving the worry over to God, and praying for you, my friend. And my prayer is that you will allow God to be strong enough for you. Its difficult to reach the end of yourself and trust your life to Someone Else. Take this journey with me and allow Christ to be strong enough for you.

Four.

2011-08-09T15:08:00.004-04:00

We celebrated this big girl's birthday early this year due to having to travel a lot in the next few weeks. I seriously cannot believe she is about to turn four.

There were friends, a pinata, a princess cake (thanks, Sara!), and presents.

Thanks to everyone who came, endured the heat, and helped make Savannah's day special!

Its Going to Be Awesome

2011-08-08T14:42:00.002-04:00

She's coming to my town via Simulcast. And its free. I'm so excited. Wanna join me? Register at www.shenandoahbaptist.org.

Fishing.

2011-08-07T06:55:00.000-04:00

"I'm lost in her there holding that pink rod and reel.
She's doing almost everything but sitting still.
Talking about her ballet shoes and training wheels and her kittens.
And she thinks we're just fishin'..."

"I say Daddy loves you baby, one more time.
She says I know. I think I've got a bite.
All this laughing, crying, smiling, dying here inside...
Its what I call living. And she thinks we're just fishing.
She's already pretty, like her momma is.
Gonna drive the boys all crazy and give her daddy fits.
I better do this every chance I get, cause time is ticking..."

"And she thinks we're just fishin' on the riverside
Throwing back what we could fry.
Drowning worms and killing time, nothing too ambitious.
She ain't even thinking about whats really going on right now.
But I guarantee this memory is a big one...
And she thinks we're just fishin'."

"This ain't really about fishing."

Date Forty-Seven: Japanese and a Movie

2011-08-06T09:51:00.000-04:00

Due to the recent life events, I'm afraid I've lost a bit of our dating challenge creativity. And we got a little bit behind. But this week, we jumped back in and we are determined to finish. :)

After enjoying a yummy Japanese dinner, we went to see a cute movie at the theater called "Crazy Stupid Love." Highly recommended!

And we made an agreement to be creative with our next date! ;)

Not Me... Friday?!

2011-08-05T21:39:00.003-04:00

My child did not give herself a haircut after weeks of begging to have her hair cut short "like Mommy's."

And she definitely didn't do it with tiny manicure scissors.

And it didn't look like a mullet. (Business in the front, party in the back.)

All of those activities wouldn't render us super thankful to have a wonderful hairstylist in the family, willing to be on call for emergencies that occur on a Friday night.

We didn't get so excited about the new haircut that we failed to learn anything from this experience.

Except maybe that by taking matters into your own hands... you actually get what you want? Oops.

Thank you, Aunt Em, for fixing the mullet!

(And its actually pretty cute, don't you think?!)

A Special Night

2011-08-04T08:29:00.006-04:00

Last night, I was completely blessed when I least expected it. Yesterday was a particularly trying day as I spent a good chunk of the day trying to get all of the loose ends tied up for Brooklyn's trip to Cincinnati. [When a fax mysteriously doesn't arrive, where does it go? I'd seriously like to find that place because its full of my faxes! My bet is that its somewhere at DMAS and somehow the employees can't locate it....] And I wasn't very successful so I was frustrated. And the closer our trip gets, the more nervous I get. And Brooklyn had a bad day seizure-wise. It was just a frustrating day in general.

We had been invited to a picnic for Special Families by our pediatrician, and I thought it would be a good thing for us to attend. I had no idea how much of a blessing it would turn out to be. I was nervous upon arrival to the park and felt so many conflicting emotions. On one hand, I was grateful to be part of something like this. On the other hand, I couldn't believe my life had taken such a turn that I was at a picnic for special families. It was a rollercoaster. Only women are so fortunate to feel so many conflicting emotions at once, ahem.

Once we entered the park, we were greeted by our pediatrician, who I'm already a huge fan of. She has made such a difference in Brooklyn's life... we wouldn't have started on the therapy and treatment nearly as soon as we did without her influence, and that would have probably cost Brooklyn a lot of progress. Anyway, all of the pediatricians and nurses from our doctors office were there, and that was pretty cool. There was a catered dinner, an elaborate cake, games,music and dancing, face-painting, and more. I got to hang out with several of the people who have spent hours working on Brooklyn's care, and got to meet other families who have had very similar experiences. Its not very often that your child can have a seizure at the dinner table and the couple you're eating with not bat an eye because at some point you actually get used to seeing those things...if one can ever get used to such a thing. Or when someone asked Brooklyn a question and she shook her head no, and then yes, because she didn't understand the question... and no one questioned me about why she responded that way... it was strangely comforting.

It was such a blessing to me. And one the way home, I heard the song Blessings on the radio and I couldn't agree more... sometimes the trials of this life are God's blessings in disguise. I'm so thankful that He chose me to walk this road...I've seen God's love in such a real way through Brooklyn and His careful provision... I've seen God's grace be sufficient in all things... I've seen the way He brings people together as only He could for His glory...it has been a wild, amazing ride. And I'm so humbled that He chose me to be a part of it.

I'm pretty sure Darren might be the biggest kid to ever ride this dinosaur.

This is my kind of cake! Strawberry, chocolate, and vanilla, with more icing and candy than you can imagine. Whoohoo!

There was bling-bling and fun activities for big sisters too.

This is our pediatrician, the best. doctor. ever. Obviously, Brooklyn is a fan too!

Will you pray for baby A? She is a sweet girl who has become a friend of ours, and she is receiving treatment at a large specialty hospital even as I write.

Savannah was so proud of her butterfly painted by the daughter of one of our favorite nurses.

Thanks to everyone who worked so hard to make this a success! It blessed our family!

Just Call Her Linus

2011-08-02T20:08:00.002-04:00

Linus: Happiness is a warm blanket, Charlie Brown.

Linus: My grandma is mad at me. Yesterday she drank 32 cups of coffee. I shouldn't have said anything. I suggested that perhaps her drinking 32 cups of coffee was not unlike my need for my security blanket. She didn't like the comparison.

Linus: My grandmother no sooner got in the house than she took my blanket away! She gave me a dollar to make up for it, but I'm gonna look awfully silly sucking my thumb and holding a dollar, and I don't feel very secure either!

Linus: My blanket, Charlie Brown, my blanket! I can't live without it! After I gave you my blanket, my life has been a nightmare. I keep passing out. I can't be without my blanket. I need my blanket, Charlie Brown!

Lucy: You know, I can't possibly tell you how sick I get of seeing you drag around that stupid blanket!

Linus: Its not stupid, this blanket has many practical uses. You just have no imagination.

Lucy: What are you gonna do with that blanket when you grow up anyway?

Linus: Perhaps I'll make it into a sport coat.

I did it.

2011-08-01T12:21:00.003-04:00

I can hardly believe I survived last week. It started with Brooklyn in the hospital, and after she got home and I got a full night of rest, I got a phone call that my sister was in labor! So back to the hospital I went.

And 14 hours later, this little chunker was born. Kendra Lee Zepp arrived at 11:58pm on her due date, July 27th. She was 9 pounds, 4.5 ounces, and 19.75 inches long. And cute as a button. She was in some distress toward the end of labor, so she was admitted to the NICU for a few days but is now home safe, sound, and spoiled.

The rest of the week was filled with the usual quality time with the littles, freeze pop enjoyment, therapy, etc.

Oh, and on Saturday we had a multi-family yard sale in our yard. We were so excited because we got rid of a bunch of stuff, made a LOT of money, and had a lot of fun. All of the families involved did really well, and we made enough to pay for gas and food for Brooklyn's trip to Cincinnati and complete a step of our Dave Ramsey plan. Proof that once again, God always provides.

(Can anyone believe how big this girl is getting? We are in the middle of planning a 4th birthday party with little friends from church and school. Where does the time go?!)

We also enjoyed time with friends at a birthday party and a baby shower. At this stage in our journey, our life is very full, but full of good things.

Nevertheless, the Momma is tired. And in a little shock that I actually survived last week! ;)

Seventeen Months Old.

2011-07-27T06:39:00.000-04:00

I can't believe this girl is 17 months old. One more month, and we will be halfway through year two. How does time move so much faster you have kids?!

Brooklyn is just starting to understand a little more speech and to use a few words. Her words are "juice" (can mean food or drink), "bye-bye", "bubbles" (said buh-buh), "uh-oh", and oddly enough, "touchdown." Click here if you don't believe me. Or if you just want to see a cute video. In speech therapy she is working on learning her body parts and names of family members. So far she can identify her nose. We are still working on everything else. She is starting to understand a few spoken commands like "sit" and "no". She can also use sign language for "more" and "all done."

Physically, this girl is all caught up. She is all over the place climbing, running, walking, tumbling, etc. She is working hard on her fine motor skills, but other than a few balance issues, her gross motor skills are right on target for her age, hooray! In occupational therapy, she is working on her pincer grasp, using a spoon to feed, stacking blocks, and turning book pages.

At this age, Brooklyn's favorite things are her blankie, shoes, freeze-pops, snuggles, mashed potatoes, swinging outside, doing anything independently, blowing kisses, Praise Baby dvds, Barbie dolls, and dancing.

We sure do love our 17-month-old!

A Long Weekend

2011-07-26T09:26:00.002-04:00

It was a long weekend around here, ya'll. Usually when people say they had a long weekend, it means they got an extra day off work and spent it doing fun stuff with their family. That was not how we spent our long weekend.

On Saturday, Brooklyn just wasn't acting right. She was irritable and spacing out a lot. She just didn't seem like she was with it. She had 4 seizures, which was the most she has ever had in one day before. She also took extra naps.

On Sunday, she starting having seizures not long after she woke up, and they continued all day long. I took her to the doctor, and they said that if they continued, she needed to be seen in the hospital. They also said that they weren't sure we could wait 3 weeks to go to CCH. We went back home, and she continued to have seizures and got sick to her stomach. I called the hospital after her eighth seizure, and they wanted us to bring her in. They admitted her immediately (and by immediately I mean the decision was made upon exam but it actually took 5 hours to get admitted because nothing is done quickly in the hospital). She had two more seizures that evening for a total of 10 in one day.

They allowed her to sleep from 1am-4am and then woke her up. They bribed her with a poptart and chocolate milk. They needed her to be sleep-deprived for her EEG.

They ran the EEG, and she earned the name "firecracker." If you aren't familiar with an EEG, they wait until you fall asleep and then they measure your head and mark it with a blue pencil. Then they put a sticky, gritty gel paste on your head and then place electrodes on the marked spots. Then they tape them in place and turn on the machine to do a 20-minute recording of the electrical activity in your brain. Well, it all went well until they turned on the machine, and Brooklyn woke up and started screaming. They tried to calm her down, entertain her, pacify her, etc, but she was fighting mad. After fighting them for nearly an hour, she got sick on them, and while it momentarily distracted them, she wiggled a hand free and jerked all of the electrodes off of her head. They had to wash her hair, let it dry, let her fall back asleep, and start all over. Luckily, the second time it went without incident. They did, however, refer to her as the firecracker from that point forward.

They then contacted experts from the Mayo Clinic and asked us if they could test her for about 80 rare metabolic disorders that seem to coincide with her symptoms. They drew blood and sent off a urine sample. We should have results in 1-2 weeks.

In the meantime, they informed us that she is just a little mystery to them, and they don't feel that their expertise is adequate to figure her out. They felt that she was stable to return home while we wait for test results and they encouraged us to continue with our plans to travel to CCH. She was overjoyed to get back in her own bed last night! We had a long weekend, ya'll.

Creativity.

2011-07-22T10:58:00.002-04:00

While some would view this at a swimsuit floatation device, Savannah prefers to think of it as a hat. Look out, Princess Beatrice. This American girl has some interesting headgear too.

Many things can be said of us, but we are nothing if not creative around here.

Attention, please.

2011-07-19T11:08:00.002-04:00

We have a monkey in the house. I repeat, a monkey in the house.

Savannah was never a climber. Brooklyn is giving me a run for my money. She has been found in various climbing-ish places lately. On top of the desk, on the back of the couch, on top of the toy box, on the dining room table... and these are just the few that happen when I am paying close attention! Ahem.

They say that time heals things and reduces your memory of things, etc. Sweet mercy, I definitely forgot how busy this age is. Never content to sit still, and always up to something. After placing Brooklyn in her room playing with her kitchen set the other day, I went to put on my makeup. She got quiet, and I found her on top of the toy box eating a cucumber. Whole. Fresh out of the garden vegetable bin, with the dirt still on it. They say not being exposed to dirt can actually kill ya. I guess we can cross that off of Brooklyn's list now.

But really, when its all said and done, what's a momma to do with this sweet monkey? Hugs, kisses, a whole lotta cleaning up, and a whole lotta coffee, that's what.

Lake Day

2011-07-16T18:35:00.001-04:00

Today we spent some time at the lake.

A good time was had by all!

Someone Else Said It Better.

2011-07-15T07:59:00.000-04:00

I have nothing profound to share today. But this article spoke volumes to me yesterday. Read it!

Happy Birthday, Connor!

2011-07-14T06:26:00.000-04:00

Savannah enjoyed celebrating Connor's birthday yesterday. The kids had a tour of the fire station during which they got to climb in a firetruck and meet firemen. Then they headed to Connor's house and dined on sandwiches, watermelon, and dirt cake. Between jumping on the trampoline, hitting a pinata, and watching Connor open his presents, I'd say it was a very fun time. My little firefighter came home and took a nap! Thanks Connor for letting us help you celebrate turning 4!

Wordless Wednesday from My Grandparents

2011-07-13T14:24:00.000-04:00

Dancing in the Rain

2011-07-09T11:32:00.002-04:00

Freaked Out.

2011-07-07T13:01:00.003-04:00

I'm a little freaked out, people.

I'm a planner. The hubby highlighted the wrong days in my planner the other week and we had a little spat about it. I things to be very planned, scheduled, and prepared for. I like them to go seamlessly. I think God gets a really big kick out of this...I probably serve as entertainment for the angels quite often.

The hubby recently had a career change. And I'm so thankful he saw clearly that he other job was stressing our family nearly to a breaking point, and was man enough to stand up and say thats enough. But I digress.

Because of the career change, and the job change, there was a little break in paychecks. Or a six week break... but who needs specifics. And because we have never been particularly good at saving money, and because the jeep needed repairs, and because of other factors, we didn't exactly have a nest egg. Eh, its overrated.

So when D informed me yesterday that he wasn't going to get paid until the 22nd instead of the 15th, as I planned, I started to get a little hyper. By the time we paid our house payment, there was going to be no extra cash for the jeep payment. I had no good plan.

As I was getting the laundry out of the dryer, I realized I hadn't gotten the mail in a few days. So I slipped out the door and walked across the street to the mailbox, fetched the mail, and brought it back inside to open it. I noticed there was a letter from the bank that has our jeep loan. That is odd, I thought. Curiously, I tore open the envelope and there was a letter informing us that we have now had our loan for a year and have made our payments on time every month, so as a reward they were offering us a chance to skip July's payment, if we wanted to.

Seriously? I'm a little freaked out.

I love it when God tips my life upside down and then rights it in a better way than I could have ever planned. God is awesome, and I'm thankful for every time He does that, even if I do protest every single time my world is rocked. Maybe one day I'll learn. Hopefully.

Wordless Wednesday

2011-07-06T09:14:00.000-04:00