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Tuesday, November 1, 2016

Epilepsy Awareness Month

Did I ever tell you that the neuro at TCH who initially gave us Bowen's diagnosis was the most rude and negative person ever? That she would never meet her milestones? Or be what we hoped she would be? I pretty much hate him. And I also love proving him wrong.

I don't say I can fully blame him though. Looking at a picture of her MRI you would see a few things. You would see that the right side of her brain is bigger than her left. You would see that her frontal lobe is abnormal. You would see that her parietal lobe is abnormal. You would see that she has too many folds on her right side. You would see that her corpus callosum is just not right. Sound scary? It is. You know what else is scary? Epilepsy. And the fact that we can't tell a seizure from a normal behavior. The fact that we don't know if the medicine is working or not. The fact that being hooked up to a fancy machine can't even give doctors answers. The fact that surgery will never be a black or white answer. 

But a few facts we do know is how much Bowen IS doing.
She currently says bubble, purple, turtle, mama, dada, more, this, ball, snack, night night, all done, open, help, and I LOVE THAT I COULD KEEP TYPING MORE WORDS. She is also pulling up, cruising, gets mad when I tell her no, bites her sister (then realizes she did something wrong and gives her a kiss), gives her baby medicine, pushes shopping carts, goes to school, loves school, and loves making friends.

We take nothing for granted and know that with HME things can change in an instant. So taking the advice of a dear friend and mentor of mine, we are soaking in and relishing in these moments and focusing on what she CAN do.

If you feel like reading more, here is more information on HME & epilepsy <3


www.brainrecoveryproject.comhttp://www.brainrecoveryproject.org




Saturday, July 30, 2016

Sweet Bowen Lee

"Never in a million years'' were the words that the neurologist used when he met with us yesterday to give us the results from Bowen's MRI. As most of you know she had an MRI Saturday and we so appreciate all the texts we have received checking on us. Sorry we have not written back yet as we were still processing everything. Long story short, the neurologist has diagnosed our sweet Bowen with ''Hemimegalencephaly" (I still can't pronounce it either so let's just say HME for short). Now try to stay off Google....here is the rundown:

  • It is a rare (really really rare) neurological condition/brain disorder. Her neurologist has been practicing for 30 plus years and has only seen 3 prior cases.
  • One half of the brain (the right hemisphere in Bowen’s case) is abnormally large (i.e. developmentally different).
  • This was NOT something anyone did (believe me I asked..did I eat something wrong? Do the wrong things?). She had this before she was born-- it's a chromosomal defect that occurs developmentally in the womb.
  • One of the concerns with HME is that the abnormally large hemisphere of the brain does not allow for the normal hemisphere of the brain to properly grow and develop.
  • Another concern with HME is the side effect of seizures.
  • The primary concern with seizures is if the severity of the seizure cuts off oxygen to the brain.  HME should be the explanation of Bowen’s developmental delays to date.  We have seen steps in the right direction thanks to therapy.  The concern is moving backwards (i.e. learning and developmental impacts) resulting from seizures.  Fevers lower the threshold for seizures stemming from HME.
  • Anti-epileptic drugs do exist, although there are side effects and they do not work all of the time for all HME patients.
  • Brain surgery in the form of a hemispherectomy exists in which the abnormally large hemisphere is disconnected and removed with the hopes that the normal hemisphere compensates for the lack of the other hemisphere (the technical term for this is “plasticity”).

So what's next? Her neurologist has referred her to a seizure specialist as well as a geneticist to sort of connect all the dots and figure out the best plan of action. The hard part is trying to get everyone to answer my phone calls :) 
The fact that Bowen has only had one seizure and doesn't seem like the ''typical'' fit for HME is so encouraging for us and we know if anyone can progress and prove doctors wrong it's her! One really important to thing us is that we cannot allow the label to define her. She is just Bowen. 
We will continue to keep you updated of course and we are always an open book for any questions you have. 
Love,
Brett & Ryann

Thursday, August 20, 2015

Average Day

I literally just spent 30 minutes writing a post about the average day I usually go through with 3 kids under 2.5. But then I realized no one really probably cares that I feel the urge to put champagne in my coffee at 8 AM or that I secretly pretend like I didn't see Cash hit Benny or that I probably let them watch more TV than they should (sorry not sorry). I think that wasn't even the point of my post. I had a conversation with a friend the other day about the perfect Facebook mom. You know the one that has the clean house and dinner on the table every night and posts it all over social media and makes you feel like shit.  It was so refreshing hearing her say, you know what, sometimes when they nap, I nap too. Or I check my email. Or I watch a TV show. Because IT'S THE ONLY TIME I GET. I will say that I'm very lucky that I have a lot of help. But kids still want their mommas. Just because I have help does not mean I will relinquish control of my kids all day. I get about an hour break these days to do things for just me. Yes, an hour. Sometimes if I'm lucky 2 hours depending on if all 3 sleep at the same time. But Cash and Benny sleep from 1-3 and  Bowen is usually awake for some of that so I like to soak up some Bowen and mommy time. So no, I don't use that time to cook a gourmet meal or bleach my bathroom. I use it to gain back some of my g-damn sanity. Usually that consists of running to the grocery store so I can throw dinner together at the last minute or buying Brett a shirt for work or maybe get Starbucks #icedcoffeeplease. Then before I know it someone is awake and I have my mom face back on again. 

Some days I think about it for a second. I'm up at 5 AM with one kid and have kids with me until 8 PM (with an hour or two break). That's like 15 hours of mommy-ing. Which I do love and is what I signed up for and I'm thankful for. But it's a lot. And it's hard. And it's overwhelming. And sometimes I want to go in my room and cry. Thank goodness for text conversations with Brett through the day, which pretty much consists of:

Me: I want to seriously shoot myself. How's your day?
B: Uh oh. You got this babe :) 
Me: What do you want for dinner?
B: I'll pick up pizza.
Me: THANK GOD.
B: And wine.
Me: THANK GOD.

I'm not really sure where the post is going and now that I (might) be writing again I promise this will be the only too long too serious one for a while. I guess my point is that outside criticism can be hard and unwanted. And the Facebook posts can be overwhelming and make you feel honestly sometimes inadequate.  I have every good intention of cooking one day or getting something done, and it just DOESN'T HAPPEN. And that's OK. Thank goodness I have Suzanne across the street who I can hijack a home cooked meal from in emergencies. It's hard to balance wife, mom, daughter, friend all in 1. But the people I respect the most are the ones who can relate to that the most and understand what we go through, which is hard. Shout out to my B- who always understands and is my partner in crime.

xoxo
ryann

Friday, August 29, 2014

RAISINS

That is all Cash wants to eat right now.

He hasn't had dinner in two nights because all he wants are....RAISINS!!!!!!!!!!!!

There are raisins all over our house. In my car. In the front yard. IN THE SCHOOL PARKING LOT.

He actually hoards them in his tent sometimes for emergency reasons.

Raisins account for 99.9% of daily tantrums.

I hate raisins.

Except when I need to bribe him.

Then I love raisins.

Tuesday, April 22, 2014

BEHIND THE NAME: BENNETT

i always knew if we had a girl i wanted a boys name for her. my mom chose one for me and i wanted to continue the tradition. i googled and googled for months and kept thinking i wanted one with a ''c'' to match cash. our top choices were carson, cade (cash and cade, i mean come on), and coy.  but none of these ever felt like ''the one''. i love cade for a boy but for a girl i didn't want people to think her name was caden or cadence etc. and carson was too popular for girls lately. and then coy was going to be if we had a boy so i couldn't imagine it on her. then i asked for suggestions via twitter and a good friend wrote me a list- one of which was bennett. i had seen a little girl on instagram a few weeks before that named bennett and added it to our list but kind of brushed it off because it didn't start with a c.  rewind to even months before that when i was in austin for the ole miss game-- my bff JD and i were talking about names and benny came up. i even texted brett at like 1 AM ''benny suzanne i love it :)''....but again we brushed it off because it didn't start with a c.

after my friend suggested bennett on twitter, everything just kind of made sense and i made the connection between bennett and benny. bennett could be her formal name and we could call her benny. you see, we call cash ''cashy'' so that night i asked brett...how about bennett and call her benny? benny and cashy? and he said, it's perfect. <3 even more perfect that my dad's name is benjamin and that makes it a play off a family name kinda sorta.

plus who doesn't want an excuse to sing b-b-b-b-enny and the jets.

the whole point of this blog post is how it's kind of funny how fate works. i think benny was destined to have this name.  my dad's name is benjamin franklin (I KNOW, I KNOW). and he is named after my grandfather's baby brother who passed away tragically in a car accident at a very young age.  he was so special to my grandfather and his family and the tragedy that they had to go through is just unimaginable.  a few years ago my grandfather gave my dad his brothers wallet, which still had the tire tracks on it from the car accident.  it was a special moment and something my dad cherishes.  so after we announced the name to my parents at christmas, my dad called my grandfather to tell him that we were going to name her bennett and call her benny. and what my grandfather said next will always be so special to me.  he told my dad that his brother benjamin went by the name benny. that was his name. what they called him. what he was known as. and that is when i knew we made the right choice, and i couldn't be happier to have my daughter share his name.

have a great day y'all
xoxo
ryann

Tuesday, April 8, 2014

MISS BENNETT

Bennett Suzanne Detamore was born on St. Patrick's Day, and I can't believe the amount of love I instantly experienced with her.  She was and is completely perfect and the sweetest little addition to our growing family.

I wanted to write her birth story while it's still fresh in my mind because these days with two kids I forget e-v-e-r-y-t-h-i-n-g.  We checked into the Woman's Pavillion around 6 AM and by 8 AM my water was broken and pitocin started. (#ihateyoupitocin) I made sure to ask the nurse the time frame it would take to get the epidural because with Cash they took FOREVER to get to the room and my contractions had multiplied a trillion by the time that doctor showed his face.  She said usually around 40 minutes.  Well as soon as I started to get uncomfy I asked for it and she said I was first on the list...after they finish up surgery. Which should be about 20 minutes. Liars. I kept asking (yelling) the poor med student when in the H they were coming because I'm about to die.  OVER AN HOUR LATER they finally came.  By this time my contractions had multiplied by a trillion again and I was screaming that I'm really never doing this ever. ever. ever. again.  As soon as I got the epidural with Cash I felt immediate relief and it was the best thing that ever happened to me.  Well this time I felt no relief whatsoever. The doctor kept reassuring me that in 15 minutes it will hit me and I'll start to feel tingly. Waited...nothing...bad contraction...waited...nothing...horrible contraction...finally the anesthesiologist' nurse pumped me another dose of medicine...nothing...then she tried a different medicine...maybe a little relief but barely....another bad contraction....at this point I'm screaming to Brett "WHY IS THIS HAPPENING TO ME, WHAT DID I DO TO DESERVE THIS, WHY ISN'T IT WORKING, I DON'T WANT TO DO THIS, PLEASE PLEASE PLEASE DO SOMETHING''

Finally they realize something isn't working and in walks the anesthesiologist and examines my back where the gigantic needle was....yeah the catheter is loose...you aren't getting the full dose...we need to redo it. DO IT ALREADY THEN.

Of course after everything was fixed I felt immediate relief. I had a FAILED epidural y'all. I hope no one ever experiences that because it sucks. Bad.

At this point I'm so drowsy from all the different medicine I just want to go to sleep and I keep talking about being on a beach with a margarita #obviously. About 5 minutes later, the resident came in and ask me if I felt any pressure or not (you know from the baby). And I'm like ummm I think so but not really but maybe I'm so tired I have no idea I can't move. So they examine me one last time and he says to the nurse...call the doctor asap this baby is coming NOW. Apparently her head was you know like right there.  The doctor comes, she tells me to push, I say I can't I'm so tired it's impossible, she says do it, I push for literally like 2 minutes, maybe 2 or 3 times, and Miss Bennett came into this world.

So after it's all said and done, I guess I can't complain too much.





She's just perfect.

And she's 3 weeks old already.

By the way they say going from 0 to 1 kid is WAY harder than going from 1 to 2....they are lying. 2 is way harder. But that's a whole other post.

xoxo,
ryann, cash & benny

Monday, March 10, 2014

ONE WEEK COUNTDOWN

WHAT CAN I DO TO GET THIS BABY GIRL OUT OF ME?

I am determined NOT to be induced and I am also determined for her NOT to be born on Cash's birthday. Totally under our control right?

I've tried hot wings. Spicy Chinese food. Hot mustard. Mex food.  Walking (all day). Chasing around a sort-of-walking 1 year old.  Rocking. A lot of rocking. I even tried pumping. Nothing!!!! I had one contraction at 3:25 AM and kept thinking this is it this is it! Then I fell back asleep and woke up perfectly fine at 6.  Grrrrrrr.  I feel like all these old wives tales are total BS. Maybe I just need to learn to accept that my babies are late and that's that.

On the other hand, I am trying to soak up the alone time Brett & I have before another little one comes into our lives. With Cash sleeping through the night and going to bed around 7, we have time for a movie, TV shows, to cook dinner, order in...not to mention sleep. SLEEEP, I shall miss thee for a while.

On the other other hand, send me suggestions to serve this child an eviction notice.

Kthanksbye

xoxo,
ryann

For your reading pleasure here was my One Week Countdown post last year for Cash man http://west26bliss.blogspot.com/2013/03/7-days.html