A Laughing Matter

Journal entry by Barbara Bradley — Jul 16, 2011

The Bradley Family made it back from California Tuesday night after our first Hemispherectomy Conference. It was definitely a trip to remember.

I pride myself in packing for trips and preparing for any possible scenario we might encounter. After spending a week or more planning for anything and everything I thought a family of four would need for a six day trip across the country, we realized while parking at the airport we forgot the little Princess’ blanket. Oh dear. Katie is perfectly fine getting through her waking hours with no mention of said “ya-ya” but sleeping is a different story. Billy and I both commented aloud how “she’ll be fine” and “she’s getting to be a big girl” yet both found each other scouting the terminal shops for any possible decoy.

One of the shop owners looked at me like I had two heads when I asked where I could find a blanket vending machine. Am I THAT crazy? After all, Best Buy has a vending machine in case you are the only human on the planet without a smart phone. For those traveling abroad, you can even purchase Rosetta Stone to teach you a language before you land. You can find purses, clothes, jewelry, bath soap, coffee, restaurants and drink yourself to oblivion all right here in Concourse B. So again, do you have blanket vending machine? Sadly, no.

As if it isn’t stressful enough entering a plane for a five-hour flight with children, I was really praying having no-blankie would be a no-biggie. To our surprise the kids were great. I was armed with snacks, movies, coloring books, Iphone and Ipad. Guess what? Katie even napped with absolutely no effort on my part but merely laying her back on the seat and giving her some milk. Can this really be so easy? Best mom ever. Well…. for the most I can’t complain but they are still 6 and 3 and it was still a long trip so knew better than to pat myself on the back just yet.

Katie has now been on medicine to help stimulate her appetite for a few weeks now and it is working. When you add Miralax and a little time to the equation, you have yourself a party. One minute I look over and my beautiful girl was peacefully sleeping, Nathan was watching a movie, I was getting into a good book, and then all hell broke loose. Literally.

Keep in mind that up until this point in time this kid hasn’t pooped on her own in a fortnight. She just had to choose the moment we are on a plane traveling across the country to remember how things work. I see the look on her face and then I slowly lift her shirt. Good God. You only think terrorists or the ever- popular movie “Snakes on a Plane” is your worst nightmare. Oh no, friends, I can tell you shit on a plane is far worse. Sorry for the visual but if you are looking for a blog about peaches and ponies or a pony named Peaches; this is the wrong blog for you.

I leaned across the isle to Billy and pleaded what now?? Meanwhile Nathan is loudly announcing it smells like a buttcrack on this plane!!

Shut up!!! This is your sister’s buttcrack! Keep it down! How was I supposed to take care of this little number? I couldn’t very well wait until we landed and I had just been to the bathroom at the back of the plane and didn’t recall a changing area there. Who are we kidding you can barely sit on the toilet in those bathrooms.

I ended up changing her across the seats while praying the stewardess didn’t come by. I was already on her list. Earlier in the flight she scolded me for throwing a diaper away when she walked by and held out a trash bag. How could I?! She then came by in her little skirt with her little drink cart and heard Katie’s movie playing. In her best high-pitched, condescending, sarcastic tone asked me to mute the movie. Really, lady? My 3 year old is happily watching Blue’s Clues not bothering anyone and you want me to mute her movie?! I can hardly hear it and I am sitting right here. I was proud I only smiled and turned it down. The second she walked by I turned it back up. Move along, lady. Mind your biz.

Thankfully after many diapers, a few movies, some crayons and three thousand goldfish crackers, we arrived unscathed.

Just so you know, our girl stunk it up on the flight home too but this time Billy had the honors of changing her.

We flew in to LA and took a 30-minute taxi ride to our hotel in Anaheim, CA. Our driver’s name had every letter of the alphabet in it. Every one. Our hotel was just walking distance to Disney Land. For the next two days we attended meetings lead by well renowned doctors, surgeon and therapists. I think there were 70 families from all over the country including Canada and Australia.

In attendance was a number of children and young adults that have undergone a hemispherectomy surgery. It was so great to meet other children like Katie: Children that limped, wore orthotic braces, did the one-handed-scoot on the floor just like Katie.

One of the speakers was a young guy that underwent the surgery as a child and is now headed to college. Amazing stuff. Not all the children have HME like Katie. This surgery is done for other rare conditions as well. The outcome and prognosis is different for all these kids but one thing they have in common is the surgery saved their lives. Even if they don’t all go to college or retire their wheelchair, the surgery saved them from a grim quality of life.

Much of the day Friday and Saturday were spent listening to guest speakers and enjoying company and meals with the other families. The kids attended camp with their peers. Katie was assigned a one-on-one helper so she could safely play and Nathan got to meet other kids that are siblings to a special needs child just like him.

I finally got to meet many of the amazing families I have been learning from and keeping in touch with virtually for the past year and a half. They are amazing people, no doubt. Several have lived through their own child undergoing three and four or more surgeries. I cannot imagine. These parents have seen it all. There was no need explaining why your child wears braces or what the heck is a hemispherectomy. Another guest at the hotel asked if we were there for the Hysterectomy Foundation. uuuuhhh, no we are not.

The Hemispherectomy Foundation’s slogan is Hope in One Hemisphere, and witnessing these children it is just that…. Hope. I think “hope” is best defined in American Sign Language where it is given two signs – think and expect. There you have it. In terms of Katie’s future, we will continue to think and expect good things.

After two long days of meetings, Sunday was set aside for our first trip as a family to Disney Land. I will tell you there seems to be no sign of the recession in these parts. Our hotel was walking distance to Disney but you have to pass through Downtown Disney first before entering the park. Downtown Disney is full of restaurants, kiosks and any kind of shop you can imagine from clothing stores and Legos. They are marketing geniuses. Even at 9am with a full stomach the smell of jambalaya at the Jazz Kitchen has you considering maybe you are ready to eat lunch. If you can manage to get by the restaurants, the Disney store is sure to lure you in for always-popular light-up Mickey ears.

People are everywhere. It is as if you have entered a real life cartoon. The kids at this time of morning are so excited they can’t help running to the Park with their parents trailing behind yelling, “Slow down or you’ll puke your $7.99 Mickey-shaped waffles!!” The boys are all wearing Mickey t-shirts and ears and the little girls are in their favorite Princess dresses and impractical shows.

But as the day goes on the mood changes and those happy running tots become tired…very tired. They start whining and crying and eventually fall to the ground like boneless chicken breasts. It is unavoidable. You have spent your life savings to be here and damnit you plan to shut the house down. Anyone can find themselves a victim to spending too much time here and giving in to a ginormous meltdown of epic proportions. I even found myself saying, “Change your attitude, mister! THIS IS THE HAPPIEST PLACE ON EARTH!”. My husband’s response, “Mommy needs a nap”.

The second we entered the park and Katie sensed riding a roller coaster was in her future she began signing and saying “train”! I thought this was brilliant. She is definitely back to using her sign language again and now we are starting to hear a few words and new sounds. The fact she signed “train” because she didn’t have a word or sign for roller coaster made our day. When she signed “bus” for the big yellow submarines that just had us grinning more. She was improvising. Upon entering, we had been told by the conference planning committee to get a special needs pass for the park. Ok, one more thing to do but we thought we’d better take the advice.

Well, friends, remember my Mother’s Day post about Holland? This is one those moments where Holland shines. We got to cut in line through the exit on every ride. That’s right, every ride. We rode at least 4 rides in the time it would take an average family to ride just one ride.

Outta the way, Perfect Attendance. Move over, Honor Student. Sayonara, Straight A….Half-brain baby coming through! Next thing you know you are being whisked away to the exit like the Brandjelina clan. A red carpet rolls out, glitter falls from the sky, you hear the theme music from the Little Mermaid…aahhh aaah aaaaaa a a aaaaah ah ahhhh, the ride attendant begins tap dancing while ushering you to the next open seat on the ride. Life is good. Ok, maybe it wasn’t exactly like that but it was something like that. In fact, when I signed all the forms consenting to brain surgery I remember the Disney clause in the fine print: Lifetime Fast Pass at all Disney attractions guaranteed.

Don’t be jealous. For the right price you can take Katie on your next Disney vacation and you too can enjoy this perk. Of course I should warn you of a few items.

1.   Do Not sleep in the same bed with her. I did so night one of the trip and was kicked in the face, stomach and groin because despite all efforts of moving her she sleeps horizontally. Oh yeah, she peed on me too.

2.   She will eat you out of house and home. This results in lots of diapers (see no. 1).

3.   She will take over your phone. Your phone is her phone.This includes updating your FB status, sending inconspicuous emails and uploading inappropriate YouTube videos.

4.   Don’t forget her beloved blanket.

I am not kidding about no. 3. While in the lobby of the hotel, I let Katie play on my phone to entertain her until we could check into our room. One minute she is watching Blue’s Clues clips on YouTube and the next minute I look and she has somehow downloaded “How to give a Sensual Thigh Massage”. I don’t know about you but my last morsel of innocence is lost. I can’t possibly fit one more thing into my day and now apparently there is an entire population working the “sensual thigh massage” into their repertoire.

Midway through the attractions we entered Toon Town, which is a section of the park lined with little character houses for Mickey, Minnie and the whole gang. Basically, you stand in line to meet and take pictures with your favorite character. Katie LOVES Mickey Mouse so this was a must.

There wasn’t a big crowd waiting for Minnie so we kept our eye on the Mickey house next door, but there seemed to be no one home. Just when Billy had concluded Mickey was out back for a smoke break, they opened the door. Thank God. You can’t go to Disney without meeting the mouse himself.

After getting the street gossip from Minnie for a bit we made our way to Mickey’s house. The adorable houses are set up to look like miniature houses but very cartoonlike. After walking through to the back of the house you see a line of people watching a movie screen while waiting and a back door guarded by a park attendant. We can’t have a mob rushing Mickey.  When the door opened they would let a couple families in at a time.

The only way to describe this moment is to think of people meeting the Beetles or attending an Elvis concert. You’ve seen the old clips of teens on the verge of laughter and hysterical tears at the same time.

Once inside we passed our camera to one of the staff but could not get Katie to turn around and pose. She hugged Mickey, grabbed his nose, pulled at his buttons, high-fived him and walked in circles while squealing with laughter. The guy taking the pictures said he has seen a lot of kids come through there but has never seen a child happier to meet Mickey. Everyone in the room had tears of joy witnessing Katie meet Mickey Mouse.

I don’t know if it was Katie meeting her favorite mouse or Nathan looking up at me saying, “Mommy, this is my best day ever!”, but if you have never been to Disney and are wondering if it really is worth all the hype  – You bet your enchanted, magical Mickey Mouse rear-end it is!

This coming week we get back to an almost normal week of therapy and will make the trip up to Duke again Thursday for an already scheduled follow-up appointment with her neurologist and surgeon. We should hear about her MRI from almost a month ago. I haven’t pushed getting the results because I know if something is wrong the docs are certain to call. Sometimes it’s good not to hear anything.

Katie is now eating twice as much as before since starting the medicine. I will find out this week but we are guessing she has put on about 4 lbs in the past month. The chubby cheeks are back. Our little bug is not so little anymore.

Journal entry by Barbara Bradley — Jul 5, 2011

For good, bad or indifferent I can say most things in life don’t happen the way we play them out in our mind.  For those that don’t know I am originally from Texas. Here is a glimpse of my imagination Texas-style.  Growing up I had visions of going to college, meeting my husband and starting a family. Nothing earth-shattering so far, right? After basking in a beautiful, healthy pregnant glow for nine months it’s time to get the show on the road, and this is how any self-respecting Texan girl has her babies. 

While getting your hair fixed at the town salon, your water breaks just as your stylist is spraying a second coat of Aquanet on your big hair. You phone your hubby, interrupt his fishin’ trip and off to the hospital you go.  Upon checking in a nurse leads you to a private suite where immediately a team will hook you up with pain meds, an epidural and a People magazine. Yee-haw! You don’t need to worry your pretty head; just put your feet up and settle in for a nice long nap. 

The hubster is lead away to his own suite for expectant Dads complete with it’s own wet bar and flat screen. There’s a back porch complete with recliners, surround sound and a place to hitch-up your horses. But mind your manners ‘cuz nurse Lucille will not stand for the men folk blaring Willie Nelson or spitting tabacco in her suite so you best go out on the back porch. Just know she will gut you like a six-point buck if you even think about throwing peanut shells on her clean floor.

Let’s get back to the lovely mother-to-be.  Approximately six hours after slipping into a pain med, epidural- induced sleep, you wake refreshed to nurse Lucille’s bubbling voice.  Think Paula Deen.

“Sugar Britches!! You dun had yer self a purrty baaaby!” With your boots still on and makeup still in place, you look down to find a baby in one hand while clutching a frozen margarita in the other and wearing a sombrero. Ole’!

Three days later and still smacking her gum, Lucille sends you on your way. “Don’t forgit’ my complimenTARY homemade salsa on yer way out, Love, and please tell your husband not to wear his spurs inside next time. Toodles!”

Thanks, Lucille, Byyyye!

As much as I was looking forward to my Texas way of birthing a baby, we moved to North Carolina. They do things a bit different here. After peeing on approximately 4 pregnancy tests, I was anxious to get a professional to confirm my joyous occasion.

“M’am, the soonest a doctor can see you is two weeks but you can see a midwife tomorrow. Can I schedule that appointment for you?”

Fast forward to us moving to NC and actually being pregnant, I was recommended a midwife. A midwife?! I was almost insulted. Really? Am I a tub-birthing-no-drug-breathing-midwife kinda gall? Aren’t we past all that? Don’t we have pain medicines now? After all, I considered myself an absolute expert on giving birth and the whole midwife’s part in that process and had already decided it was not for me. Isn’t this what it’s like….

Back in the day you met your future mate at the local sack and feed, married outside in front of the locals and got pregnant approximately 36 minutes later. There is no trip to the spa or salsa for you, my dear. You worked the fields right up until your water broke. You yelled out to the border collie to summon Pa. This sets off a chain reaction of hitching the buggy, smoke signaling, mama getting the warm water and towels (even after having children I still don’t know what that’s about but apparently it was critical for women in all the known parts of the world), and somebody finally reaches the all-important town midwife.

Next thing you know you’re crouched down like Yoda in the wheat fields sweating and screaming profanities in the throws of labor. This wild haired beast is dancing circles around you chanting at the top of her lungs and hitting her tamborine. All the while your thinking, “When I get this baby out, I’m gonna…”

“Uh, M’am….. can I schedule an appointment for you?” Sensing my hesitation she tried again. “How ‘bout you meet with the midwife just to confirm you are pregnant and get you started on some vitamens. If it isn’t for you, we’ll get you in to a doctor of your choosing.”

To make a long blog even longer, I did meet with a midwife and loved her.  In fact, I stayed under the midwives’ care for both pregnancies. Don’t believe all that you hear….. they don’t even own tambourines. Ironically, after all these preconceived ideas about how things were supposed to have gone I ended up delivering both babies via c-section. Ole’!

All kidding aside, try to keep your mind open, pray, stay the course, and know it all will work out in the end. 

Weeelll, if yall ‘spect Sugar Britches to stay purrty she needs to get her beauty rest. Yall come back now!

Journal entry by Barbara Bradley — Jun 17, 2011

The humor in the following post has been brought to you by Nathan Bradley, age 6.

Enjoys: swimming and riding his bike 

Favorite food: mac and cheese, yogurt

Favorite words: outstanding, butt

My favorite quote from him: (in regards to his sissy’s room) “Oh my goodness, it smells like a buttcrack in here!!” 

In the spirit of Summer break, it is perfectly acceptable to hide from your children.

Case in point: During a pre-park sunscreen slathering, the following takes place… 
“Oh mommy, I’m sorry you have all those freckles on your arms….wow..it’s okay, that is how God made you…woah, there reallllly are lots…I bet I can count them all for you….yeeees, we need to…LET ME….don’t worry mommy, I can do it…..STOP MOOVING! I can’t count if you don’t hold still…..does that one count as one or two?….they are so close together like one is trying to hide…Peek a Boo! Huh, there is one on your hand too but it’s really round…mole?..okay, moooollle…that’s a funny word…EEEEWWWW, there is hair in it! YUCK, mommy! Beee still and let me see it!….Ok, I know….I’m gonna get my scissors…WHY?….just wait here it won’t hurt…I am good with scissors….I did LOTS of cutting in school…just wait………………..Okay…Mommy? …where did you go?….MOMMMMMY, WHERE ARE YOUUUUUU?!………MOMMMMY!”

 
School has been out a week and so far I am keeping the kids entertained. Nathan had vacation bible school this week and I was his crew leader so we had some good Mommy-Nathan time together. We have also managed to get some other fun things in around Katie’s therapy sessions. Poor Nathan gets dragged to all of them for now but he is pretty good at entertaining himself. 

Katie has had a good week for the most part but not entirely uneventful. She had another spell this afternoon too which I am not happy about. I was sitting on the couch with her after her nap and she got wide-eyed and her face turned white with red splotches. It’s a look of panic or pain or both. I did hear her stomach gurgle too and she had just gotten up from a restless nap so I have to think its her stomach. A bit more time on taking the prevacid, wait to get her MRI, and then back to the GI doctor I suppose. UUGGH.

Alright, I really need to get some sleep. Grandma and Papa are arriving tomorrow for a visit. I will have two very excited kids….and two very excited grandparents. 

Note: Just so you know, no freckles, moles or hairs were harmed in the making of this blog entry. Also, if you do chose to hide from your children, they always find you.’

Journal entry by Barbara Bradley — Apr 7, 2011

I heard from many of you that you enjoyed my Spring Break post. Now that we are on the back side of Mother’s Day, I am glad many of you shared you were able to relate. No one said motherhood would be glamorous or easy but an instruction manual or even a sewn on “care tag” would have been appreciated. Of course, if we knew exactly what we were getting into we may have just put them back on the rack as if we had taken a peek inside and found a “dry clean only” tag.

Happy belated Mother’s Day to all the moms out there. I leave you with a poem. Most of you have probably never heard of it but those of us with a special needs child were probably given this poem at some point. 

Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever  go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Things are going well for the most part. I continue to stay busy. Lots of therapy. Lots of appointments and WAY too much time on the phone with Cigna. One day you’re gonna find me wandering the streets mumbling to myself. At least once a week, this is what takes place on the couch of my living room with cell phone in hand.

Me: dialing Cigna customer service 800#

Automated voice: Please enter your account information…

Are you calling as a customer or healthcare representative?

Me: customer

I heard healthcare representative. Is that correct?

no……cu – sto- mer

I’m sorry, I didn’t understand. Let’s try again. Healthcare representative or customer?

CUSSS TTTOOO….(husband sitting on couch next to me laughing causes me to break up laughing which only further confuses stupid automated voice lady)

I’m sorry, I still didn’t understand. Let’s try something else. Do you need to speak with an associate?

YYYYEEEEESSSSS! (husband out of reach for me to throw remote!)

Ok, let’s find out a bit more about why you are calling. Is this medical or dental?

UUUGGG! &^*(*&^&*^%^&%!!!!!!

I’m sorry, can you please repeat that? I’m still having trouble understanding you/

#%$$#%#$%^#$%^!!!!

Journal entry by Barbara Bradley — Dec 29, 2010

How was everyone’s Christmas? Ours was wonderful and maybe our best ever. We got passes to come home and be together as a family, an anonymous elf bought the kids’ presents, and it snowed!

Tomorrow we are outta here!  It has been some kinda year for us. In the past 6 months Katie has been in the hospital 4 times. In April she had her first 24 hour VEEG, we stayed 3 days in September for increased seizures, in October she had a 5 day VEEG in preparation for surgery, and November 15 started her surgical and rehabilitation journey up until now. If you had told me that was how it was going to go down, I would have probably run away.

Since our stay here, which began just three short weeks ago, I have seen dramatic changes in Katie. The day we arrived she was still in pain and was agitated more than anything else. While here she has learned to sit unsupported, move her right arm and yesterday she started taking steps with assistance but without the walker. She went from mute to the beginning stages of finding and exploring her voice. She has also regained her spunk, determination, curiosity, sense of humor, and fierce flirting powers.

She is making great strides but I know there are still many struggles to overcome. We have lots more therapy in our future.  During her basic exam by the audiologist she suspects there may be a hearing loss on her left side as a result of the surgery which we will need to explore further. This is somewhat frustrating because she also lost her right field of vision in both eyes (which we knew would happen). This will cause her to turn her head so she can see out of her left field of vision. If there is hearing loss on the left side this will be unfortunate for her as that is the ear facing people as she turns her head to see. She will also need to see a neuro-opthomologist for her right eye. The basic needs in life must also get back to working order. I was convinced up until yesterday she just may be a vampire. How else does one explain a child that does not see the need in eating, sleeping or pooping?? She was living on air and giggles alone.

---

Speaking of giggles…. Here is an example of a typical night these days. I should begin by saying we taught Katie to fake sneeze this weekend. It just may be the most adorable thing ever ….well..until it isn’t. Katie usually gets her meds between 8-8:30. She doesn’t really have a hard time falling asleep but she doesn’t seem to be able to stay asleep. Sleep is regulated by the brain and she needs to relearn to sleep. It doesn’t help that she is painfully spoiled these days. I have been getting in her bed and wait patiently. until she falls asleep. I know.  I have no one to blame but myself but what else can I do in such close sleeping quarters? It’s her hospital bed and then my little couch/bed is just feet away. She is also very affectionate and craves tactile sensation. Normally that is very sweet but not when I’m trying to sleep. She not only wants me to lay with her and sing to her but our foreheads must be touching. Right? She is also twirling my hair because well, she is a hair-twirler and she doesn’t have any to twirl right now so what is a girl to do?? I then say prayers and by the end of the third rendition of you-are-my-sunshine she is asleep and I can carefully break-free. This would be good and fine if she actually slept through the night but she doesn’t. Lately she wakes up 3-5 times a night and will grunt and point at me on my little cot by the window until I get back into bed with her. Yes, it is exhausting.

So, now that you have this little ritual in your mind, you can better imagine last night. She woke up around 2 am so I get into bed with her. She was not even trying to be tired so after 10 minutes or so I closed my eyes and “ignored” her. Parenting life skill, right? This is pretty hard to do when she is 2 inches from my face but I didn’t know what else to do. Then I feel it coming on…..that’s right….  a sneeze. I scrunched up my face and held my breath and did everything I could do to stifle it but there was no stopping it. I sneezed. I tried my best to keep my eyes closed and pretend it didn’t happen but I knew what was coming. I cracked my lids open the slightest bit and waited. Katie went from complete stillness to a full body giggles and then mocked me! She fake sneezes right back. She interpreted my innocent sneeze as an invitation to play but all I want to do is get some sleep. I lots it at that point and buried my face in the mattress laughing.

Katie will go home with a loaner wheelchair while we wait for insurance to approve getting one made for her so this could take several months. She has new leg braces. The one on her weaker side is a taller brace and the other is just at the ankle like before. She will wear a splint on her right hand/wrist at night to keep her fingers from contracting and getting stiff and a splint for the right arm to keep it in a neutral position when she “walks”. We are looking at weekly therapy for speech, PT and OT. The staff here has also been working with the school district to hopefully get her into a special needs preschool. This would allow her to have trained teachers and get therapy while in school too.

This has been quite the year for my family. It is certainly not an easy life but it is a good life. I have said this before; one little girl sure can bring a lot of people together in faith. Here is to the close of 2010 and to the start of literally a new life for Katie and my family. Bring it on 2011! Happy New Year! 

Journal entry by Barbara Bradley — Dec 15, 2010

Burrrr! It is cold out. Stinks for those of you out in it. Thankfully there is a silver lining being stuck inside so much.

It has been a busy couple days around here, but Katie is doing great. She got to use a special walker yesterday and took steps. Lots of steps!!! She needs some help and the walker gives her lots of support as her legs are remembering what they need to do. As with other aspects of life, going through the motions at this stage really is enough sometimes.

She has been participated in more group therapies lately. Because she is such a social butterfly (or maybe just downright nosey), she tends to do better around her peers. If you add music to this equation, Katie will just about try anything.

She had me tearing up yesterday and today during speech therapy. They have an observation room with two-way glass so that I am not a distraction for her. The therapist would show her animals and ask her to make the sounds and she was repeating the sounds!!!!!

Katie, what does a lion say? Rrrrrroaarr!!!!!!!

What does a dog say? Uuuuffff, uuuuffff! (then comes the laughter because she knows she is doing it)

---

Katie is also back to her curious self. Back in our room we are both tired but need a bit to settle down from day. I think I finally have us settled for the night. Just when I am almost asleep I will hear …

Eeeeeeehhhhhhh (pause) eeeeehhhhh (pause)

I will look up to see the hospital bed going uuuuuppp and then dooowwwn, and uuup and down…down…down. “Katie, what are you doing?” giggle giggle “Little bug, stop it. Go to sleep please. Leave the buttons on the bed ALONE.”

I left the room yesterday and she conveniently pressed the nurse call button. “Mrs. Bradley, can I help you?”, “Mrs. Bradley….. are you okay?”.

Yeah, Mrs. Bradley is fine. Mrs. Bradley went to get some coffee.

---

The quote of the week came yesterday from Ms. Tina the nursing assistant. She will tell you her job is “monitoring what goes in and what comes out”. After helping me give Katie a bath she asked if she had pooped yet. Nope, I say.

Then she leans in to Katie and says,”Guurrl, if you don’t get that poop out, they gonna give you the milk and molasses treatment. That may sound good ’til they tell ya where they gonna stick it!”

Oh, Lord, I am sure I am not giving that comedic justice but I about wet my pants from laughter.

Another silver lining to being here around Christmas is the visitors. Yesterday Steve Smith from the Panthers came to visit. He brought the kids gifts and paid for a magician to do some tricks for the kids. Katie didn’t care about the magician but she was cute when Steve handed her a stuffed frog. Right after he gave it to her she stuck her tongue out and licked the top of his head (the frog’s head not Steve’s).

Today Nascar driver Brian Vickers visited. He gave Katie a little car and his autograph. They came with a film crew and photographer but I don’t know where the footage might end up. Of course Katie doesn’t have a clue what is going on but one day she will understand. Goodness, I might have to shower tomorrow 😉 No telling who’s on the agenda.

Journal entry by Barbara Bradley — Dec 9, 2010

My cup runneth over. What a great couple days! It is toddler bootcamp around here. Her first session today was at 7:30 this morning. Her breakfast hadn’t even arrived yet. The therapist popped in with barely a knock and said, “she can eat after her session”. Sir, yes sir!!

I kid you not, during that first PT session this morning while riding a therapy tricycle I heard that sweet little hint of a laugh and by the time Billy and Nathan arrived at 4 pm she was full-on giggling and laughing. She is back, baby!

Yesterday she had just started sitting up unassisted with someone behind her and when Billy got here she rolled herself over in the bed when she heard his voice….onto her left side. Tell me how that is possible with her not able to move the right side??? I didn’t see it until she was already over.

Katie is using an adorable, tiny wheelchair here. Although I really didn’t want one it does make life easier so we will most likely have her fitted for one. We certainly don’t expect her to need it too long but a 30 lb kid is very heavy when they can’t move half their body. Of course there is the lack of walking aspect too. The chair also gives her more support than a stroller.

This is terrible to admit but I didn’t want to face the “chair” before. Prior to surgery I could go out in public and no one really noticed Katie was different on first glance. If I didn’t want to talk about it I didn’t have to. Now things are different. She is bald with a huge incision and in a wheelchair. Upon seeing her I now get the sideways, lips pressed together sigh of sympathy.

We met another little girl here the same age as Katie. This place could be its own reality show. Everyone has a story and that is probably the reason hospital TV dramas have been around so long. Her parents lost site of her for a second and she drown in their mostly drained swimming pool. When Katie stopped breathing 60 times a day a month ago, this little girl took her last breath…. or so they thought. They were about to pronounce her dead when she came back. She is now a 33 lb infant (their words not mine) and will need lots of therapy and interventions but she is alive. Everyone here is here for a reason.

I hear everyday how strong I am and I must say I am no different or better than any of you. I believe we are all capable and no one really knows what they can handle until they have no choice but to handle it.

Journal entry by Barbara Bradley — Dec 7, 2010

I am jumping ahead a bit. Just the usual immediate concerns for anyone that just had major surgery: sleeping, pain management, eating, and don’t forget dealing with insurance. You would think it would be a “no brainer” (sorry, too soon for brain jokes?) insurance would easily sign-off on inpatient rehab for someone that just had half their brain removed but it took a bit of work. I am one tired momma! We finally got discharged today! Well, Katie got discharged but the whole family is included. I road in the ambulance with Katie and Billy followed. This seemed unnecessary to us. I overhear the drivers talking to the nurse when they came to get her and one of them said, “….if she has a seizure we will take her to the emergency room.”

Okaaaaay, if you can’t handle that situation then why the fancy ride? I have a perfectly good minivan, with a DVD player ( thank you very much), and I have dealt with hundreds of seizures. I’m just sayin’

We got to Levine around 3 this afternoon. Today was just about getting settled and them getting more history, etc. She is going to be one tired little girl. They do 3 hours of therapy everyday so it will be intense. This is a very nice facility. Everything is new and well equipped. I look forward to meeting her therapists and getting started tomorrow.

Journal entry by Barbara Bradley — Nov 26, 2010

Surgery is over! We are in the ICU waiting area now. Katie is in recovery still. Her neurosurgeon came to meet with us. He said things moved quicker than expected. The next 48 hours are critical. This is a traumatic surgery and some scary things that can happen afterwards but I don’t want to think about right now. I am just so relieved it’s over.

Last night was very rough. Katie had over 50 seizures just last night. They were happening every 2-5 minutes so I stood by her bed side with oxygen in one hand and the tube to suck out excess drool from her mouth in the other. They gave her atavan twice last night but nothing really helped. She was so exhausted she didn’t even wake up before surgery. They were able to transport her and get anesthesia going without her ever waking.

Things are moving along as they should. The CT scan didn’t show any unforseen bleeding and her bloodwork looks good. The only issue is pain and itching. It is hard to know if she is itching from the rash still, pain medicine or anesthesia still making its way out of her system. I can tell you it’s hard to see. As if she isn’t in enough pain! The itching alone would make anyone crazy. They are great with her though and are playing music for her night and day. Tonight she will be in ICU. We are not allowed to stay with her and this is a blessing in a way.

We will sleep tonight guilt-free. I may even go to dinner and sleep in the same bed as my husband. We need to take advantage of our expensive babysitters.

Tonight we have a room (only tonight and tomorrow night for now) at the Ronald McDonald House. It is a great charity but it is a shared space including living space and bathrooms so you can’t help but feel like we have moved to a shelter or half-way house. After the next few days we will have to move out and back to a hotel. Once she is moved back to the peds floor we will be back to taking turns in the room. It’s a lot of change.

I walked into the waiting room this morning and Joel Olsteen was one the TV and this quote stood out to be from his sermon that has remained with me all day, “Choose to bloom where you are planted.”