She's ALIVE!

It's about time I updated the 'ole blog.  

Things have been pretty good but busy around our house.  Ben has been home for the summer.  The girls have been attending daycare part time, then hanging with Dad in the afternoons.  Ben spends the mornings either working on stuff for cross country, doing stuff around the house, or running errands.

We just celebrated our five year wedding anniversary on Saturday!  It was pretty anti-climatic, but we'll be going out for a nice date in Austin this weekend, which we're looking forward to.  

Betsy and Ella are sweet, busy girls.  They are best friends.  They love school.  They sleep well, eat tons of fruit, and can wreck a clean playroom in 90 seconds.  Ella has been visiting the ENT every couple months for a hearing test but she passed her most recent test and she's been talking up a storm since she got her ear tubes in the Spring.

Sweet HusBen took a man trip the first week of the month, with his dad, my dad and lots of the dudes in the family.  They fished (didn't catch much), hiked, shot guns, and rested.  I think he enjoyed it.

While Ben was gone my mom came to town to help with the girls.  We kept things pretty low key, but there was ice cream, playgrounds, bouncy houses and spoiling that was enjoyed by all (most often by the littlest family members).

My health is pretty stable.  I'm still on my mega dosage of my medication, but I have some really good days where I feel like my old self.  I've been writing, I've been sewing, I've been getting my house in order, and hanging with the girls.  

So, FYI, we're alive and kicking!  We're busy, I'm tired pretty early at night but we've had a great summer and we're looking forward to the last few weeks left.

Life happens

I've had my hands full with life and haven't blogged in a while.  I should also acknowledge that this has been the hardest year of my life and sometimes I don't know what to write.  Today I'll blog an update on where we are with several things...

Ella

Ella had ear tube surgery about a month ago.  We went for a follow up a week ago and her tubes were clogged, and she failed a second hearing test.  Ben is taking her back for another ENT check on Thursday to see if her tubes have cleared with the aid of ear drops we've been using.  For the most part she seems to be doing much better.  She's chattering more.  She's a happy, happy girl.  But last night she woke up several times which sometimes is a symptom that she has fluid in her ears.  We are concerned about Ella's ears, we want them to clear up, and of course we want her to have perfect hearing.

Ella is mini-Shan.  Not only because she looks just like me, but also because she ACTS just like me.  She hates getting dirty or sweaty.  The other day we played outside and I said "Are you hot, you want to go inside?" to which she replied "YES. INSIDE." and sprinted to the back door.  Juuuust like little Shannie did as a kid.  Ella is our love bug and would happily spend all night running from Mom, to Dad, to Bets to hand out hugs if we let her. 

Betsy

Betsy is a riot.  She is such a funny child.  She's pretty proud of being a big girl and clarifies often what things are "For big girls, like Mommy and Betsy, not babies like Ella."  She is SO smart, her ability to reason things is astounding to us.  Sometimes it's like having a roommate that lives with Ben and I because little Bets is so self sufficient.  About twice a month she lets me hold her and rock for a couple of minutes, but Betsy seems like she's 3 going on 13.  She's a tomboy, she loves to play sports, she is extremely coordinated, and doesn't mind getting dirty.  She is the biggest Daddy's girl I have ever met in my life, and I can understand why because Ben is SO fantastic at being a Daddy.  They are just BFFs, partners in crime, and when Ben isn't at work he takes Betsy everywhere he can with him.  We love this age.

PST

For the most part my Pseudotumor is being controlled right now.  I have small headaches sometimes.  My medicine has some terrible side effects but I've adjusted most of the time.  I'm not sure how long I'll need to stay on my medication but I don't feel ready to get off or lower my dosage yet.  I have moments of being overwhelmed because I am so fatigued but those moments are very few, and we have an army of support.  The greatest blessing in our lives is our family and friends. 

As you can imagine, five months of medical appointments, medications, and treatment comes with a mountain of medical bills but I think we've done a good job of handling those as they come in.  My doctor appointments have gone from weekly, to biweekly, to monthly, to every three months, and now I don't have to go back for six months, unless I notice a change in my condition. 

It's easy to be overwhelmed and live in fear of what will happen next.  But I'm not and I don't.  I've been thinking lately about the lessons I've learned through this experience.  First of all, if I could go back and take away this experience I would not.  It's been so eye opening to me about what is important in this life.  I don't take many things for granted.  I find myself dwelling on how grateful I am to have such a comfortable warm home for my children to grow up in.  Clean sheets.  Snacks whenever they are hungry.  The ability to take them to the doctor at a moment's notice.  I don't begrudge handing over almost half my paycheck to our daycare because we are so blessed that the girls spend their days in the presence of people who care about them, love them, and help them learn to be better people. 

Not every moment is sunshine and rainbows.  Sunday was a particularly messy day in the B house filled with every bodily fluid you can imagine, and no Daddy home to help and for a few minutes I felt sorry for myself.  But it was SO short lived.  I find myself loving the noise, mess and giggles while I'm wrestling in the playroom with the monsters and at the same time loving the silence at the end of the day when I clean up the playroom, drink a glass of wine and appreciate everything that we've been given.  Even if I spend hours every week (ugh.) cleaning that playroom, I'm so glad my girls have that space to play, and be independent, and read books, and cook play brownies in their play kitchen.

So life has been...hard lately.  But life has been good too.  I'll try to be better with blogging :)

Big Happenings!

We spent the weekend in Dallas and it went SO well. It's not always easy taking a 1 and 3 year old from their natural habitat and expect them to behave (well) and sleep (well) but this was our best experience with traveling with the two girls. Ella slept in the portacrib, and Betsy slept with me, while Ben slept on the couch. Don't feel so sorry for Ben, he didn't mind getting his own space to sleep away from space-heater-Betsy.

The girls had a GREAT time with cousin Abby, and we ate at wonderful restaurants, they played on Abby's super fun jungle gym, ran around in matching dresses, read books together, watched Curious George and did other 'cousin things' that left them all so sad to part after three days.

Speaking of our departure, we discovered we had LOST our last two ninnies that morning and we decided to take advantage of this opportunity to ditch it for good. Last night was....traumatic. Betsy was not a happy camper, but if it was the worst of the withdrawals then I think we can come out of this alive. It's easy to say that as she wanted nothing to do with me last night, Ben was the only one who could make her feel a wee bit better (not minding the 'daddy's girl' thing right about now. Bets woke up happy though I am sure she'll be beat when we pick her up today, she didn't sleep well and wouldn't nap without her ninnie. Fingers crossed tonight goes smoother!

And ELLA's big news is that she went for a hearing test. She 'failed' one ear, they found fluid in both ears, and with her history of ear infections they quickly got us in for a follow up with ENT (this morning) and in two weeks she'll have her tubes. I have the feeling Ella will be a blabber mouth in about 2.5 weeks. She tries so hard to talk but I'm thinking her stuffy ears have been holding her back. We've also vowed to finish taking Ella off the bottle as soon as she gets her tubes. She really only gets one before nap and bed, but I'm ready to be done with that too.

That's about all for us at the moment! Ben has three more regular season games before the post-season starts for soccer. I'm working on getting our house organized, and continuing the 'mission to eliminate carpet from the Bralley home, one room at a time'. I think next week we'll be installing more new flooring, and I'm thrilled to pieces about that.

We're enjoying our health, and our family time right now :)

That moment

I'm sure this is normal for someone with a chronic illness, but I go back and forth feeling so grateful that I'm here with my family, to anger that I'm going through this, to sadness that my kids can tell something is wrong, and guilt that I can't give them all the energy I used to. This may sound melodramatic but bear with me.

When I spent Christmas in the hospital I felt really sad. I felt so alone, and I had moments of despair thinking "Why me? Why am I away from my family?" I had this one mental picture of where I would be soon: back in my home, in my bed, with my husband, and my girls. All snuggled up together. Watching a movie. It seems like such a small thing but when I wanted to cry I would close my eyes and picture that moment, because those moments are the most peaceful in the Bralley house.

I often didn't allow myself to be fully 'in the moment' as I was trying to do ten things at once at night, or in the morning, and something so simple as snuggling my girls might not get my full attention. But lately it has been getting my full attention.

I'm sure I've said this before, but there was nothing so terrifying as wondering IF I would be back with my family. And if I would be able to SEE my children. So lately if we're snuggling in bed I try to take just a few minutes to put down my Kindle, face my babies and watch them (usually while they watch Harry Potter). Betsy likes to snuggle her head into my shoulder. Ella prefers a full frontal assault of the 'human blanket' on Mommy. I really take in the moment of how they smell, and look and how their hair feels. I really, really love those moments.

I love those moments so much I stayed in bed 25 minutes late to have extra Betsy snuggles this morning. It was worth it.

The Monsters

Poor Ella can't catch a break with her ears. She's had several ear infections in a row and we finally got a referral for the ENT doctor to discuss having tubes put in her ears. She's such a happy girl but I can tell her ears bother her and I really, really don't want her to suffer hearing loss with her ear infections so I would rather be pushy (I prefer proactive) and get them sooner rather than later.

She still such a little one, just over 20 pounds. But she's very coordinated, loves to walk herself from the house to the car, from the car in to daycare, and carry her own lunch or snack. Ella is the sweetest thing ever. She loves to give kisses, hugs for mommy, she loves to tickle Betsy and they play chase around the house. She loves to dance and clap to music. I love that kid!


Oh the Betsy monster. She is precious too. She is VERY independent. Both the girls are. She likes to be the leader (she tells us all the time, I'm the leader, follow me). She loves being with Ella and her cousins William and Hudson. She's like a mini adult, reminding us to "Be careful" and "Don't drop it". I overhear her with Ben having deep conversations all the time and they crack me up. This was one of my favorites last week:

Ben: What did you do at school today?
Bets: I ate dirt.
Ben: You ate dirt?
Bets: Yeah, it's yummy.
Ben: Like on the playground?
Bets: Yeah, dirt with worms. Slimey worms.
Ben: That's so gross, don't eat dirt.
Bets: It's yummy, and Anna's mommy brought it for snack time. I eat dirt, DADDY.
Ben: So not REALLY dirt, it was like cookies or something. Right?
Bets: NO DAD. I EAT DIRT.

She also loves playing games, we're on a candyland kick lately. Nothing makes the girl happier than the whole family sitting around and playing together, and we've played together almost every night lately.

And what I love the most is how the girls are playing together lately. They get along so well, and play together in the playroom. They sit in their matching pottery barn chairs and have snack time and watch Diego and laugh together. I love seeing them be friends.

Health update!

I should have blogged this a couple weeks ago but I've been pretty busy getting back in the swing of things!

Monday February 13th I had a spinal tap and it was...rough. It was pretty painful. The good thing was my opening pressure was much lower than a couple of months ago so my condition is improving! The bad thing was I developed a spinal headache (a leak from where they poked the hole inside) and I was out of commission for about a whole week. I couldn't stand up without having a terrible headache. It was bad enough that I would fall into the wall if I stood up, so I didn't get out of bed except to use the bathroom.

My in-laws were all SO amazingly helpful throught the week, coming over to keep me company, helping around the house, dropping off and picking up the girls. It was so hard. I consider myself a productive person and I got pretty depressed that I couldn't go anywhere, or do anything to help Ben and the girls.

Finally Saturday the 17th I felt better and started getting up and moving around, but really it wasn't until Monday the 20th that I was back to myself. I luckily had the day off for president's day and I got the laundry caught up, and played with the girls.

Fast forward a couple of weeks and I had a follow up appointment with my neurologist. I'm staying on my (terrible, horrible, no-good, very bad) medication, but I'm stable enough that I don't have to go back to the neurologist for three months, and I just need to contact him if I notice my symptoms returning or worsening. My optic nerves still aren't back to normal, but they look much better than they did when this all started. Something about the ridges is still off and I wonder if this is why I (on occasion) notice my vision go out of focus for a second or so.

So that's where we are! I'm pretty stable with my weightloss, I need to keep that up, and I need to pay close attention to my body. I still feel that by the end of the year I'll be in a very different place than I was a whole year prior. This is a journey, and I'm really in the beginning :)

Upcoming treatment

I had a nice long streak of improvement with my PTC, but as of this past weekend my symptoms have been returning. Also, my optic nerves are beginning to swell again (at least I KNOW what's happening). I went to the Neurologist Wednesday and weighing my treatment options we decided the best course is for me to get another Spinal Tap to measure the pressure on my brain, and to draw some fluid off thus immediately relieving my symptoms.

It's not exactly a pleasant process but I do have a very high pain tolerance and the pain of the procedure is nothing compared to the relief I feel afterwards. I immediately feel better, my headache goes away and my eyes feel better.

So the soonest I could get the LP (Lumbar Puncture, another term for Spinal Tap) is Monday at 10:30. I went ahead and took the whole day off because I do feel pretty woozy afterwards and I'm sure I'll need to rest. And sweet HusBen took the day off to hit up one of our favorite haunts (Scott and White Hospital) and babysit me afterwards.

I anticipate a quiet weekend at home. Today my only plans are resting and doing laundry. All week I've been pretty worn out, and I've just ignored any messes or laundry accumulating around me because it's what I've HAD to do. Getting through the work day, playing with my girls and getting to bed early is about all I'm accomplishing. And I'm fine with that! So, if you wouldn't mind, keep me in your prayers Monday morning, I would appreciate that.