Frequent flier miles

Journal entry by Barbara Bradley — Oct 13, 2014

Katie has been having episodes over the past couple weeks. Saturday morning, coming off a bad night, she had the screaming episodes while awake. At that point, they decided to admit her for EEG. After a rough day, we finally got a room and hooked up to EEG. Of course, she had 2 episodes prior to them getting the leads on and then nothing after that. Finally this morning she had one. Although she didn’t scream out it was clearly a seizure.

Her neurologist and his team came by this morning. Unfortunately, they are coming from her good side and he is confident this is independent of her left side. She doesn’t react when the left side has activity at all. This is not the best news but at least we aren’t facing surgery.

No sooner did they put her on a new medication…….Can you guess where we are? Unfortunately we are back in the hospital. Although the trileptal seemed to keep the seizures at bay, Katie woke with a rash Wednesday morning. I got word back from the neurology nurse that they had a cancelation yesterday afternoon. If that wasn’t enough of a de-rail to our week, the nurse called me Thursday morning while dropping Nathan off at school telling me not to give the medicine that morning (too late) and to pack a bag because he may want to admit her. Uh…ok…I literally had to back bags, pick Katie up and get a script filled in an hour and a half’s time. This must be how a fugitive feels packing up and getting out of town.

More of the same

Journal entry by Barbara Bradley — Oct 1, 2014

I didn’t know what to expect from last night but it was pretty much a repeat of the night before. Nathan actually heard the first episode around 2:30 in the morning. Sad to have a 9 year old on seizure watch but he heard her and knew to come get me. Like the night before they happened about every 30 minutes until about 6 this morning and then we just gave up and got up.

The nurse called me back this morning and relayed back that the neurologist brought up night terrors and wants me to capture an episode on video so he can better determine what is going on. The episodes are too often and too systematically. Also, she clearly wakes up before the episode like she senses something coming on (aura) and she is awake after it happens. Night terrors don’t happen the exact same way, don’t happen so frequently and the person usually isn’t aware of the what’s happening and are very difficult to arouse during the event. Of course, I am no doctor but with her history it stands to reason we really have to consider it.

Here goes another night. At least we get some of the night in before they start. I hope at least to capture a good event. At least with the pattern they are fairly predictable so I should be able to plan when to be ready. 

No rest for the weary

Journal entry by Barbara Bradley — Sep 30, 2014

I’ve been up since 3 am so if I write something loopy then you will know why. I am getting to the point where I never want to celebrate the good or say anything is “fine”. I guess I need to accept that it just isn’t going to be. I will just cut to the chase because I am exhausted, frustrated and in no mood. We literally just drove up to Duke on September 5th for an EEG. A week later, we get results back and they are clear.

I took her back to the GI because we felt we could then conclude her issues must be GI related and not brain.  Now, in the past few days I have woken up around 6:30am to Katie screaming bloody murder like someone is in her room. I was praying it was perhaps her stomach or just a good old fashioned nightmare…until last night.

I have been up since 3am with Katie screaming in terror every 30 minutes until I finally just made her get up around 7. I had wanted to let her sleep in but not if that is the alternative. I can only assume these are seizures but I am starting to feel like the kid who cried wolf. However, this is the same child that went 2 years seizure free, started having enough seizures to land her in the hospital 2 days later and then had a second brain surgery 2 months after that……so, hell, we are due again, right? I don’t even know what to say. I have a call in to her neurologist. If I don’t hear from the nurse in a couple hours I will can back. I must have some sort of direction to go before the night comes. I am terrified of going through that again. It is bad enough feeling on high alert like you have one eye open but it’s worse to wake up to a scream like that over and over again.

Please pray for answers.

3 year Hemi-versary

Journal entry by Barbara Bradley — Nov 26, 2013

Today marks the 3 year anniversary of Katie’s first brain surgery. It is really hard to believe it’s been 3 years. That was such an impossibly dark, exhausting time for all of us. Thinking back always helps put this time of year into perspective. I saw an e-card on facebook that read, “Only in America do people have an event called Black Friday where they try to maul each other over unnecessary things the day after giving thanks for what they already have.”

Boy, the holidays have really snuck up on me this year. I thought I had another week before Thanksgiving but here we are. I actually heard a girl at the gym say, “You better get to the grocery store. The old ladies are gonna buy up all the eggs and scallions.” Uhh…okay. I don’t even know what that means but consider yourself warned. If you didn’t get what you needed yesterday at the grocery store you are SOL. The old ladies have bought the place out. The kids were still in school today so I spent the day running errands in the cold, miserable rain. I don’t think it got out of the 30’s. My first stop Honey Baked Ham Co. I am not chef enough to make my own Thanksgiving Day spread. Plus, I don’t have it in me to take out an old lady in the egg isle so this works out well.

Happy Thanksgiving all. A day for family, stuffing yourself a bit too much and giving thanks for all your blessings. I shared this on FB but it’s worth sharing again…

I am thankful for my sweet boy Nathan. On Saturday morning Billy was still out of town and the kids were up before me. Nathan had gone into Katie’s room and helped her out of bed. He eased her back into her beanbag and started a movie for her. I was up by this point and got a muffin for Katie. Nathan sat with her and broke up the muffin into bite-sized pieces and kept the dogs at bay so she could eat in peace. With coffee in hand I sat at the table and watched as Katie leaned over and kissed her big brother on the cheek. Just as the tears pooled in my eyes, Katie cackled loudly and grabbed Nathan’s ear pulling with all her might causing him to squeal like a little girl. Sibling love? Well, that was so sweet…. while it lasted.

My point is I always worry what kind of person he will become but it’s obvious already; he already is who he is. Just as I was chosen to be Katie’s mother, he was chosen to be her brother. Yes, he has gone through more than most 8 year olds but it has shaped him with many good qualities. He is and will be a kind and compassionate person that accepts others. Not everyone gets that education at such a young age. 

Now, go get your groceries, people – the old ladies are out! You have been warned!

Mr. Dookey strikes again

Journal entry by Barbara Bradley — Apr 25, 2013

To all my dear readers that loved the Mr. Dookey story, this is your lucky day because he made his return yesterday. Thankfully I was not a witness to this most recent pull-up, prison breakout because he made his latest run for the border at Katie’s preschool. I bet this event falls under the “other duties as required” in the pre-k teacher job description. God bless ’em. 

So I have not been buying anymore pull-ups but a few still remain in our supply stash. Katie usually saves her dirty work for me so this hasn’t really come up at school until yesterday. I greeted Katie and her teacher yesterday during afternoon pickup time to see my daughter in the way too short, “extra” uniform I brought at the beginning of the year. Her teacher went on to explain what had taken place. At some point Katie had pooped and her teacher took her to the potty to change her not realizing Mr. Dookey had made his escape. Again, I was not there but I know how sneaky he can be. I don’t know if he sits nervously at the edge of the pull-up with eyes darting back and forth waiting patiently to make his move before cautiously sliding down, or perhaps he just straightens his cape and takes a nosediving, suicidal free fall. One will never know. 

If that isn’t enough of a visual, the teacher assistant entered the dark bathroom later. Upon seeing Mr. Dookey, she kicked at him to see if he was breathing and ensure there wasn’t some dead vermin curled up in the corner by the toilet. Boy, did she get a surprise! Now, before we blame innocent Mr. Dookey let’s consider the possibility that our pull-up friend should take some blame here. I wonder if I should write to Huggies and Pampers and tell them about my experiences. My day as a mom is only as good as my daughter’s diaper protection and I personally feel that pull-ups have failed me yet again. 

Coming to a town near you, Katie and her adventures with Mr. Dookey are sure to strike again. This is fun. Maybe I should have t-shirts made and we could vote on theme music. 

Katie had a follow-up with her local neurologist last week. He hasn’t scene her in almost a year so we had a lot to catch up on. I told him about her pupils dilating and constricting and wanted his thoughts. He wants us to continue observing her and taking notes about the events but he also doesn’t think we should lose any sleep over it. He thinks it’s just something called hippis which is really just a muscle spasm of the eyes. Similar to when your eyelid twitches or spasms. He certainly understands it is very strange to see. He also said that her pupils, bowels and  temperature regulation could all be related as something misfiring with her autonomic nervous system. Again, he just wants us to watch her but he doesn’t feel they are seizures. 

Today Katie will attend her third session with the feeding therapist. It’s taking some getting used to but we are making some progress.  They mostly just play with different foods to get used to the textures and help with the sensory side of eating but she isn’t expected to eat the foods during therapy to take the pressure off. Oddly, she has been trying some new foods outside of therapy. Her teacher has been getting her school lunches and Katie has tried chicken nuggets and baked chicken! She has also eaten peanut butter on a bagel. These are all great steps for Katie. She is 5 1/2 and this week and this is the first time she has eaten chicken. 

Katie’s IEP Transition to Kindergarten meeting will take place some time in May. I’m choosing to not worry about it anymore. I was told I would not be blindsided and would be told where the team is leading (in terms of school placement) prior to the meeting but it seems there needs to be a big reveal of some sort. It’s similar to watching The Bachelor. The guy is down to the last two women with one episode remaining when he will propose. He stands shirtless looking off the balcony that overlooks the Pacific with a concerned but come hither look on his face. His voice narrates the scene, “I just never knew it would come down to this…..I am in love…with….both woman….equally..I don’t know what I will do….” Gag

Dude!!!! You have the 3 carat Neil Lane, designer ring you picked out but didn’t pay for in your pocket!!! You are proposing in 24 hours!!! How do you not friggin’ know who you are proposing to?! Whatever, I’ll play along. Perhaps something earth shattering could happen over the course of the next couple weeks that will be a game changer in deciding where Katie will go to school. Stay tuned for the After the Rose Ceremony…

You dropped something…

Journal entry by Barbara Bradley — Apr 1, 2013

First things first, Katie is doing well. We were a little discouraged exactly one week after her clear EEG. About every 7-10 days, I have seen Katie’s pupils do their dilating and constricting business. I am not sold on these being seizures. Out of 2 neurologists, her brain surgeon and 3 eye doctors, only one has even thought this. Maybe it is but we aren’t seeing anything else and we never saw this during all the seizure types we saw before the first surgery. Granted, it is something and I don’t know what but I am not convinced they are seizures. I have not gone back to Duke. We are scheduled to see her local neuro in a couple weeks and she will go back to Duke in June and see her doctors there and have another EEG. Until I see something more or they become a lot more frequent I just don’t see the need for testing right now. I just can’t see myself sitting up in the hospital days on end hoping to see something. 

We met with a speech therapist that specializes in feeding therapy this morning. I liked her and she thinks Katie can make progress with outpatient therapy. I just happened to see in the newspaper a few weeks ago about this new clinic. They are right down the street from us. With summer near we will have more time to work yet another therapy into our week. 

I’ll just jump right in head first; my children have embarrassed the snot out of me this weekend. Saturday night we went for ice cream after dinner. It’s one of the few treats we all like. Nathan gets one scoop in a cone and likes them to put sprinkles on top for “hair” and candy “eyes” to look like a person. I know he has gotten this many times but usually the “hair” sprinkles are multi-colored. This time they gave him chocolate sprinkles on top of chocolate ice cream. I had gone and sat on a bench with Katie before Nathan got his cone. As he rounded the corner with cone in hand he loudly announces, “Look! They made me a black woman! See!!!”. Yes, baby, I do see that. Thank you for sharing….with everyone.

And then there was Easter Sunday…In an effort to help her teachers potty train, we have recently been trying pull-ups on Katie. The pro is that they can be pulled up and down like underwear. The con is that they don’t hold much more than a dribble. Dressed in our Easter Sunday best, off we went as guests and visitors of a new church. We made it through most of the service with Katie taking turns sitting on my lap and then with Billy and back again. Things were fine until they weren’t. Suddenly I began to smell a toot. I was sure in the moment it was only a toot but I have been changing diapers forever so I think I am a little immune to the smell. 

About three fourths of the way through the service, the smell was not letting up. As Katie hopped down from my lap for the umpteenth time I noticed the white flowers on the front of my dress were no longer white. Well, poo. I gathered my purse under one arm and Katie under the other and fled the sanctuary. I settled in the lobby just on the outside of where the service was being held. I started to locate a bathroom but realized I only had a pull-up with me and no wipes. Neither one was going to save me. I nervously paced back and forth a bit in front of a couple other parents of crying, young children that were also looking for refuge in the lobby. 

I took one sly peek inside Katie’s skirt and decided to leave well enough alone. I though it best to send Billy a text LETS GO. He received this during the final prayer and came out with Nathan seconds later. Then it happens. I exchanged a knowing look with Billy and began to lead my daughter out to the van to change her. No sooner did I turn around when I hear an older gentleman say, “You dropped something”. I looked down and made an audible gasp. I could not have been more shocked if there had been a dead body. Said dookey had dislodged itself from that useless &(&%^* pull-up and scooted its way down Katie’s inner thigh only to settle in a pile right in the church lobby. Right by the exit.

The lobby where in approximately 2.5 minutes a sanctuary full of hungry Methodists were about to spring forth. I could not have been more embarrassed if I had shimmied topless down the center isle of the sanctuary. All I could do was wave at my husband, and then make a gesture toward the pile in question. Then I made a decision. I grabbed the car keys right from his hand and announced that he deal with it. Honestly, they are lucky Billy was there. If I had been by myself I would have blamed the Easter bunny, hoisted my little shitter under one arm and ran like the wind. Each man for himself. RUN!! 

By the time I got to the van I was doubled over into an hysterical, laughing, crying, snorting, uncontrolled fit. You know that kind; I could not even stand up straight. I was covered in poo juice and my five year old daughter was now naked from the waist down in the back of the parking lot staring at me. Nathan was very concerned by this point. “Mommy, are you okay? Are you laughing or crying?” Billy gets to the van by this point. I didn’t dare ask about the pile but he was muttering under his breath and shaking his head. All I could get out through my tears was, “Guess Katie didn’t like that church.” I don’t think that will be a problem. I don’t think anyone will ever invite us to church again. I can’t say I blame them. We are not allowed to speak of this again.

Good report

Journal entry by Barbara Bradley — Mar 2, 2013

I will make this short and sweet. Katie had a routine EEG and follow-up with her neurologist at Duke Thursday. It was a very long day that began with getting up at 4:45am but we survived and thankfully got good news. 

She had a 30 minute EEG that captured some awake time and a short nap. Her neurologist saw no suspicious activity on her right side. He printed the report for me. I have never actually seen one of her printed EEG’s. The left side shows constant peaks while the right side is unaffected. Pretty amazing if you thing about it.

He also printed some MRI images prior to her last surgery showing the residual fibers that were still connecting the right and left hemispheres. It looks like a map with a small peninsula trailing and connecting two continents. For now he wants to leave the meds as they are and let the dust settle until at least six months post op before we even think of changing anything. The brain is still healing from surgery. She will go back in June and have another EEG (happy, happy, joy, joy) and if all is still good perhaps we can begin the gradual process of taking her off one of her meds.

SkippyJon Jones

Journal entry by Barbara Bradley — Jan 31, 2013

I spent more time driving yesterday than I did anything else. Katie had her first postop follow-up visit yesterday with her surgeon. She is already just over two weeks out from her revision surgery. He is pleased with her healing. Other than not leaving her stitches alone and mommy threatening to put a cone around her neck like a dog her incision is healing nicely. There is a soft, short regrowth of hair already covering the scar and covering evidence anything happened. She is still walking and getting around a bit slower but improves every day.

She is getting back to her old self. This includes getting stuck on the same book and asking you to read it 500 times. Her favorite book right now is SkippyJon Jones and the Big Bones. For those of you that aren’t familiar, SkippyJon is a Siamese cat with large, pointed ears that imagines himself as a chihuahua when he’s feels like getting into trouble. He likes to sing rhymes in a Spanish accent when he’s pretending to be his alter chihuahua-ego. So, when you see me in Aldi clapping and singing in a Spanish accent you will know why. Even though I should have the words memorized by now I prefer to make up my own…..

In honor of my little Pickle Pants…. My name is Katie Brad-lito. (clap clap) I like to chew on my blank-ito. (clap clap) I don’t have much hair, But I really don’t care. ‘Cuz I’ve had two brain suger-itos!!! (clap clap) If you didn’t clap and use a Spanish accent, please read again.

Katie started back to school this week. Overall, she has had an amazing week despite throwing a fit last night because she was so worn out from the long day. Just two weeks out from surgery and we have probably heard 20 new words, she used a fork and ate with righty and she not only peddled an adapted tricycle at school but steered by herself…for 30 minutes in the gym. I must say we are all amazed at her progress this soon after surgery. She makes it hard for anyone to make any excuses about anything. Her next appointment is at the end of February. She will have an EEG (can’t wait) and have a follow-up with her neurologist.

Home sweet home

Journal entry by Barbara Bradley — Jan 22, 2013

To our surprise, we got word of Katie’s discharge early Sunday morning. I was so happy of the news I didn’t dare argue. We had originally been told Monday but this was all based on Katie getting over her nausea.

Nathan has gotten the first smiles out of her. She loves that boy. One of her favorite things to do is pull his ears (I know, I know) but she loves to pull and he squeals and she laughs…and he squeals more and then they both laugh. It’s sounds pretty torturous to me but I guess it’s a sibling thing.

Other than the physical setback she seems to be on point cognitively. Her neurologist came to see her the day before we were discharged and he was enjoying quizzing her on her colors and where’s your nose…where’s mommy’s ear? I knew she was still my Katie when I saw her recovering in ICU. Prior to them taking her back she was playing with my phone so it was an answer to prayer when she asked for the phone as soon as she saw me.

We have just been taking it easy and trying to get back to normal. The kids already had Monday and Tuesday off so that worked out well. Billy stayed home the past two days as well. We have enjoyed spending time all together. Nathan is going back to school and Billy returns to work tomorrow. Katie attended therapy today but I don’t think she is quite ready for a full day of school yet. I hope to take her in for half a day Friday. I think it will do her good to see her friends and teachers.

For now we focus on getting her back to her normal routine and keep her healthy. She has been touching her incision so we have to watch her. Aside from putting a cone around her neck I am not sure what else we can do. We see her surgeon in two weeks for a follow-up and will see her neurologist in about a month. It has been such a blessing to see her sleep peacefully.

Wait with Patience

Journal entry by Barbara Bradley — Jan 15, 2013

My morning Bible Devotion is very fitting for today:

Wait with Patience

Many people want change, but they don’t want to go through the waiting process. But the truth is, waiting is a given, we are going to wait. The question is, are we going to wait the wrong or right way? If we wait the wrong way, we’ll be miserable; but if we decide to wait God’s way, we can become patient and actually enjoy the wait.

It takes practice, but as we let God help us in each situation, we develop patience, which is one of the most important Christian virtues. Patience is a fruit of the Spirit. It’s developed only under trial, so we must not run from difficult situations.

As we develop patience, the Bible says we finally feel completely satisfied, lacking nothing. Even our relationship with God involves progressive changes. We learn to trust Him in a deeper way by going through many experiences that require us to wait longer than we’d like.

Trust me, the waiting may be hard, but it will make you stronger. The benefits that patience brings are certainly worth any uncomfortable wait!

All done.

Thank you for all the prayers. The surgeon came out about half and hour ago to let us know they are done. She did great. He removed more of the frontal lobe to make sure everything is disconnected. He did see a “suspicious area” that looked like scar tissue but is where the scans were showing some fibers were still connected. He just removed that whole area to be sure. She has now had more of an anatomical hemispherectomy but not completely. He didn’t want to disrupt any other areas unnecessarily. They finished earlier than we thought and he didn’t even need to put a drain in. We are relieved to be done with this leg of the journey. On to rest and healing.