Wordless (Sorta) Wednesday

Dear Doctor.

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

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

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.

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

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.

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.

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.

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

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!

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

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

Date Fifty: Roll Tide!

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

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!

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

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

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!