Grateful for our new Pickle Hat!

As you know I call Ryan “Pickle”, I love my Pickle so, and what I really love is that now a bunch of other people call her Pickle too.  When someone calls her by her nickname, I feel it’s that they feel close to her and love her.  Her Nurse at school calls her Pickle, she even once jokingly corrected Micah, when he called her Bug.  I loved it, we love you too Nurse Kathy.

For Christmas Nurse Kathy made Ryan a hat, it’s a Pickle hat!

IMG_3180 IMG_3181It’s perfect and I planned her entire outfit around wearing it (of course).  I rushed to get her meds done, fed, dressed, and posed all before school this morning, thus it was my first “official pajama drop off”.  Oh well, we are still high from yesterdays news and this hat, and nothing can stop us.

 

Merry Early Christmas from the Cleveland Clinic, a very Merry Christmas

Safety SleeperToday Ryan had her one year follow up at the Cleveland Clinic.  A month early yes, but whatever.

The big news is that our girl is still Seizure Free.  EEG formerly full of spikes and today’s EEG is “Night and Day”, that is what the Neurologist said.  Neurologist’s don’t often give definitive answers, you know the brain is a mystery.  But today we heard words like Remarkable and phrases like Night and Day.  And today I am just happy.  That is it.

He is writing the script for the bed, and a letter of medical necessity, I am working on getting our insurance companies DEC, or Durable Equipment Company signed up with the “Safety Sleeper”, and it will work, I know that it will.

All things are great, we are still Seizure Free!!!!!!

http://thesafetysleeper.com/index.html

 

Love is in the Details

I heard that phrase yesterday, Love is in the Details.  It’s so true, and today I am very aware of it.

I had a phone call with someone for twenty plus minutes from our health insurance company.  A woman who’s name I don’t even remember spent twenty minutes trying to help me figure out a way for the insurance company to cover a safety enclosure frame canopy bed for Ryan.  These beds are thousands of dollars, and I just don’t feel like yet again we should foot the bill, or raise money for assistance with footing the bill.  This woman saw that it was medically necessary for my Autistic/Epileptic daughter to be safe, and it is medically necessary for her parents to get some sleep, knowing that she is safe.

The crib tent works for now, but our gal is getting lanky.  It’s so crazy, I am barely over five feet tall, and Micah my love, is not on the tall side either , and here we are with a lanky little girl.  I want to believe that one day she will be able to sleep in a big girl bed without an enclosure, and I do believe that, but today isn’t one day.

jToday is 11 mos. since her brain surgery and today the details are warming my heart, today a Health Insurance Co. worker gave me two sources to call for companies that may be able to help us and are in network.  She also told me which code to have Ryan’s Neurologist put on the order so that our Durable Medical Equipment coverage would kick in.  She walked me through our in network and out of network deductibles.  This might not work out, but today I don’t feel so alone, today I am warmed by details.

My ten grateful days of Christmas

IMG_2058.1 IMG_26422014 has been the biggest year in our lives.  While I am so grateful for it, I hope that Micah and I never have a year like this again, and of course we hope that Ryan never has a year like it again.  I know that a lot of folks feel bad for us, and the hardest part about accepting that, is acknowledging that there are many things in our life that are hard, and worthy of sympathy.  I don’t want to focus on those things anymore.  I don’t want to even feel bad for myself anymore.  My life is awesome, it is hard but it is awesome.

I have a husband who adores me, and every time he looks at me I feel gorgeous.  I have a daughter who we are able to provide for, yes her needs are greater than most, but we are able to do it, and so far I haven’t needed to go back to work.  I think that the insurance/community and school resources/state funding systems for special needs are broken, but we are making these broken systems work, and we are content with them, for now.  Yes my life isn’t working out that way that I thought it would, but my inner monologue is still more plagued with body issues, than any special needs Ryan has, or my parenting style.  And most especially I am blessed that a skinny three foot girl, with four missing teeth and a pixie hair-cut snuggles up to me every night, so that I can sing her the ABC’s while I rock her to sleep.

A new diagnosis, a few months late.

The house is almost sold.  We are going to be packing it up tomorrow, all of the staging items and all of the other things in it will be packed in to a POD tomorrow and then off to storage, a shelf will be sold, a sump pump will be checked by the city, and original windows will be emptied from the old decrepit garage.  We are keeping all of our things in storage for a few months while we get the new place ready.  The new place is move-in ready, except it isn’t Carrie move-in ready.  We want to open up some walls, paint, and change all of the floors out on the main floor.  Maybe I’ve already told you that.  I don’t know.  My mind has been very much elsewhere lately.  I’m sorry

I’ve been focusing on getting Ryan ABA therapy starting in January, now that her new insurance plan is set up.  I am sure that I haven’t yet disclosed that we found out Ryan is Autistic.  For some reason that diagnosis, the one that I wanted, the one that I’d ask for means a lot more when you know that it’s real,  that she is in fact Autistic, that as she gets older her little quirks aren’t so easily whisked away in public.  She is our wonderfully joyous daughter, but she is Autistic.  I didn’t expect to take it so hard.  I actually had a panic attack, which I thought was a heart attack and was hospitalized for a bit.  I’m fine, take care of yourself, you won’t be a good Mother if you aren’t around, try to relax, we’re sorry, blah, blah, blah.  A work in progress as always.

I’ve spoken to a few parents of children who have seizure disorders/brain damage like Ryan, and those awesome kids have also been diagnosed as Autistic, they are helping.  It’s a spectrum, and so are my feelings about it.  Right now I’m still kind of devastated.  Devastated because I think that the public has a perception of Autism, and a box in their minds that they will stick Ryan in to.  When I tell folks that she used to have 100’s of seizures a day and needed brain surgery, they see her as adorably brave.  I’m afraid that when I tell them she is Autistic, they will see her less favorably.  I don’t want to even put the prejudices I fear she will face in to writing, I don’t want to give these thoughts any space, but they are scaring me, people are mean, and my little girl has to touch everything and lick most things.  She loves to lay on the ground in public and feel the carpet, tile, or wood floor with her forehead.  I noticed while we were out and about this week, that folks aren’t finding it as cute as they used to.  What if she doesn’t get over this.  What if it doesn’t end.  It isn’t a matter of me not disciplining her, it is that she doesn’t understand discipline and she needs to do it for some reason.  It’s a sensory thing, and believe me we’re trying, we are always trying.

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Superhero Day at School

Today is Superhero Day at Ryan’s school, and well we just couldn’t pass up the opportunity to show off our little Wonder Woman!

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My hair is wet and I’m late for school, lets get this photo shoot over with Mommy

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She wore my favorite Wonder Woman jammie shirt and her tiny superheroes cape to school today.

http://tinysuperheroes.com/

We are almost eleven months post op, eleven months since she received the cape from this wonderful charity and our friend and Ryan’s OT Cheri.  Eleven months since they removed two lobes from the left side of her brain.  Eleven long and arduously joyous months.  This pictures reflect a gal who is not a morning person rather than the Ryan of today.   The Ryan of today is doing wonderfully.

Here are some quick updates!

  •  She can do her jack in the box.  She can twist the handle to make it pop out and she knows to just flick the little piece of plastic to get her “jack” to pop out of the box more quickly
  • She can open our front door, so we have to have it locked constantly and she is starting to tap the deadbolt.  Smart girl, at the “new” house I am going to ask my Uncle to install high deadbolts, because as thrilled as I am at this achievement, we have to keep a girl safe
  • She is more frequently turning when you call her name
  • She is walking and holding our hands more easily, dropping to the ground less and less.  We still need the stroller alot, but hey it is also easier for us to have her in a stroller in the mall anyway, so there you go
  • She is seemingly more excited to see Micah and I, she is also grabbing our faces more, sometimes giving a high five on command, turning the light switch on and off, and even reached for Micah’s hand at the park
  • She loves to play on our bed now, roll around in the comforter, and she can get herself up and down
  • Her favorite thing is the pots and pans cabinet, she pulls them all out, plays with the colanders and strainers first, then she likes to drop the lids on the tile floor to hear the noise, again and again, and even again.  With the ringing fresh in all of our ears she’ll flip over a cake pan and use it as a surf board, and cruise around the kitchen

I get that these are all typical toddler things, but a year ago they were far from typical Ryan things.

I don’t want to focus on what she isn’t doing yet, but still no words.  She is getting her point across better though.  She is babbling annoyance through toddler fits and babbling strings together.  I try to be her voice and let her know that I am hearing her, by saying things like, “I know that you are upset, I know that you don’t want to go to bed, I know that you just want to play, but it’s time for ni,ni and I love you”.  I know it sounds crazy, but I really think that she appreciates that I “hear” her and she seems to understand the explanation, even if she disagrees.

All in all a little Wonder Woman

Thanksgiving

It’s about time that I start getting ready for Thanksgiving.  My Mom is having it, but I am making a few things, and my cupboards are bare, so off to the grocery store I go.  I feel like Thanksgiving came in with a rush this year.  Wasn’t yesterday Halloween?

Last year, Ryan’s upcoming surgery was looming.  Here seizures were increasing, she was dropping left and right, and we were on hyper alert 24/7.  I am thankful beyond anything else that those days are gone for now.  I hope gone forever.

I am really looking forward to the Dog Show as well, and we might have found a house!

Thanksgiving’s Past

Ball

2011

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2012

Ryan Gasworks Park.4

2013

 

Recovery and oh yeah, Ryan had surgery this week

On Wednesday Ryan had ear tubes replaced, her adenoids removed, an endoscopy and an ABR hearing test.  How did it go? Well, great, ehhh, and great.

The ear tubes were more maintenance than anything.  She had ear tubes placed in May 2013, and one fell out a while ago, so she needed it replaced, so they just went ahead and did both ears.  The adenoids were removed because of her history with ear and sinus infections.  She is doing well, however her recovery isn’t going as easily as we would have liked.  She seemed to have bounced back day one, then that afternoon and the day after she was super crabby, super sore, and kept grabbing at her throat.  She isn’t the best drinker, she can do a sippy cup, but she just doesn’t really like to drink anything.  Juice, water, chocolate milk, it doesn’t matter.  So I kept filling a 10ML syringe with cold water and she was basically sucking it down.

This is definitely where her low level of communication becomes a huge issue.  She keeps fussing, but we don’t know why, she rarely cries and suddenly she is crying with tears streaming down her face, I snuggle her, I put on a cartoon, I give her a little Motrin, offer up a favorite snack and nothing seems to work.  Luckily I recalled that the Doctor said cool water is commonly requested by patients for adenoid removals, and the cool water syringe hit the spot.  For awhile at least.

The ABR hearing test came back as “normal”.  Normal is of course a bad word in the special needs community, but I’ll be brazen and use it here.

The endoscopy showed pooling in her esophagus and her Nissen (fundoplication) has slipped.  http://en.wikipedia.org/wiki/Nissen_fundoplication, if we fix the Nissen it may help reflux but it may increase the pooling.  If the pooling increases too much, then she could hold things in her throat for too long and perhaps she would aspirate.  If we loosen the Nissen then the pooling could decrease but her acid reflux could come back ten fold, and too much acid in your throat makes you miserable and can potentially lead to cancer.  So WTF is how I feel.  WTF, yep it’s blunt and I’m sorry, but my baby has been through so much, we have been through so much and I’m tired.  I love this girl so much, and I am tired of her having to be such a warrior all of the time.  I am tired of being a warrior all of the time.  I am ready for something to just work, and work forever.  She also has a hiatal hernia http://en.wikipedia.org/wiki/Hiatus_hernia, so that is awesome. 

So the Surgeon suggested that she will likely need to have another stomach surgery.  If they end up doing surgery this way, then maybe it will work.  If they do the surgery another way, then maybe it will work and maybe neither will work, and we may have to give up the dream of her continue to eat and drink orally.  Our current Surgeon said that we should watch and see for now, she is spitting up less now, she is eating better now, and maybe she has outgrown her reflux and maybe her cognitive abilities will increase and she will understand how to make herself swallow when food or liquids begin to pool in her throat and well maybe, maybe, maybe.  In the meantime we are getting everything ready to get a second opinion.

I am too sick to go to school, or am I faking it so I can take another bubble bath??

I am too sick for school, but not sick enough for another bubble bath??

 

Christmas Card Photo Session

Obsessed much? Who me? Yes, Yes I am.

Yesterday my Mom and Dad came over to help me do Ryan’s Christmas Card photo shoot.  I’d hired a photographer, but her scheduling and a death in her family thwarted the plan.  Ryan is having a surgical procedure next week, (all is ok, more next week) so I needed to get it done (and I had a coupon and few vouchers I needed to use) Sorry I’ve digressed, back to the photo session.

Why would I need help you ask?  Because I am obsessed.  I want to set the stage, I want Ryan to be styled to perfection and I want her to be looking at the camera.  How did it go? Well the results were good, (two good shots) but the journey was exhausting (hundreds of shots discarded).

My Mom and I set up the area, my Dad kept Ryan busy.  My Mom gave Ryan a bath and did her hair,  I did pre-shoots and checked the light.  My Mom dressed our model (after ironing all of her outfits, thanks Momma) and then all three of us danced around like Monkey’s trying to get Ryan to smile, to look at the camera, to stay in the “staged” area.

After three dresses and one pair of Christmas pj’s I gave up, after countless times of us trying to coral Ryan, and a bag of Pirates Booty I had to face the facts, Ryan doesn’t like photo shoots.  Ryan likes running around.  Ryan finally free went and sat down next to Poppa on the couch and presented her biggest smile of the day.  Where was the camera then?, on the mantle of course.  Then we disassembled and un-wrapped some of the prop presents and Ryan climbed in to one of the boxes, and her second biggest smile of the day shone bright, and where was the camera then? On the counter.

When will I learn, I know my kid, I know that she is adorable and happy, but she is no show pony.  She dances to the beat of her own drummer, and I need to stop trying to make her conform.

Solution? I’m going to take my Dad’s suggestion next year and just put a green blanket over him, and learn Photoshop.  Problem Solved!

 

*Inspection went well, we don’t have the final report yet, but we seem to have to fix a few plumbing things, a pesky kitchen sink drip and a basement laundry sink.  Hopefully performed easily (cheaply) enough.

 

Here are some of the failed shots:

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Pirate booty and wet hair

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I will not keep a bow in my hair Mom, stop trying

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I told you to get this headband off of my head.

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I’m going to teach my doll how to get in somersault position

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Thanks Grandma for all of your hard work

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Poppa you are the best, and I love our talks

whirlwind

So it’s been a whirlwind.  We are under contract on the house.  We “sold” it in six days!!! The inspection is tomorrow and I am nervous to put that out in the world.  Fingers crossed that everything goes well, and I didn’t just jinx us.

Back in 2012 when we were planning on permanently moving to TX, we listed the house.  That listing also went under contract (though months after we listed the house and we accepted a total low ball offer, because the market was bad and we were more desperate).  That time I knew that I didn’t want to move, I didn’t know how much I didn’t want to move until the house went under contract and I was so sad.  I was also angry that the “buyers” were stealing our house.  I hated the idea of selling the house then, I felt like we were abandoning our home, giving up on our projects, and leaving all of our friends and family.  Back then we didn’t know that Ryan had Epilepsy, back then I thought that a house was more important than it is.  This time I don’t feel that way.  This time I feel good about the offer, I’m excited because the “buyer” seems to be excited to buy an old house, and doesn’t plan on tearing it down, and this time I am not giving up my emotional stability over some bricks and mortar.

The first sale was called off by the “buyers”, like I said that market was bad a few years ago, and they decided not to buy at all.  We happily rented the house out, moved to TX, and figured we’d move back or sell in a few years.

We thought if we sold it would be to buy in Austin, TX, oh well, that didn’t happen and I don’t mind at all!!!

Here are the finished pictures of our gorgeous first home, we hope to be purchasing our gorgeous second home in the new year!

Cropped Basement Desk

The basement, and the moved radiator

Cropped Basement Playroom

Basement playroom

Cropped Bathroom

Downstairs bath

Cropped Bedroom 2

Upstairs bedroom, staging secret that is an aero bed on some Home Depot buckets!

Cropped Dining Room

Dining room. Check out the patio furniture with a Target tablecloth!

Cropped Master

Master Bedroom

Cropped Stairway

Stiarway, 7.99 lamp from Goodwill

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The mudroom that I spent days and days painting

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Living room with borrowed furniture and an IKEA bureau that is filled with all of my painting crap

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The daybed that I got at an estate sale for Ryan’s upcoming “big girl room”

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All of Ryan’s toys were used in this staging!

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Tandem Room set up as a toddler room, also a sneak peek of what Ryan’s toddler room will look like in the new house

 

 

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