I second the second opinion!

Today Ryan and I drove downtown and got a second opinion on her throat and her spitting up issues.  The opinion is that the surgeon does not think that she needs another surgery.  Perhaps just for now, but for now we’ll take.  She said that everyone spits up sometimes, and she thinks that it is good that Ryan can still throw up (her fourth surgery tied up a portion of the top of her tummy, so that she didn’t always spit up).  She also thought that it was good that Ryan is gaining so much weight these days.  She has grown another half inch and gained a bit of weight since she’d seen her before.  Since she had her adenoids removed our girl has really thrived, perhaps the adenoids were causing some of the spitting up troubles as well.

All in all, other than the traffic and the fact that Ryan cried almost the whole way home (no nap, hungry) a good day.  Tomorrow she has school and two private therapies and I have a bunch of things to do to get ready for the new house.

 

The house

I forgot to tell you all, we settled on the issues with the siding and the house.  We are closing at the end of the month.  Once we close I will flood the blog with pictures of our new home, and all of my plans for it, and I’ll complain about something, or a lot of things.  But for now let me verbally paint the picture.

Four bedrooms, two and a half bath two story Suburban Home.  Nice neighborhood, dead end street.  Flat back yard!!, a two car garage and here is the wild thing.  We will have the same next door neighbors.

Right now we live about four blocks away from the “new house”.  next to our rental house is a family that is a second marriage.  Dad has three kids, Mom has two kids, they are a wonderfully blended family.  The two youngest kids I have mentioned before in this blog, they have come over to play with Ryan and me.  We are working on Ryan’s play kitchen together, and we sometimes hang out.  Well their Dad actually lives next door to the “new” house.  How crazy, so we already have friends!  I’m very excited about this, because as I mentioned before, I love these two.   When we were possibly not going to get the house, I joked with Micah that he should call Mark our next door neighbor, and ask him where his ex-wife lives, because we are still in the market for a house.  It was funnier in person, I guess.

Back to the house:

The first floor is the living room, dining room, family room, and eat in kitchen, along with a powder room.  Yep a powder room!!!!, oh and a pantry.  What, what…..

There is a full basement, it is divided in to three rooms, one large room, one smaller room/office, and a laundry/storage room. The big room may one day become a family space, but for now it will be a huge playroom/therapy room for Ryan.  Micah will take the smaller room as his office.  One day we might switch them, but for now that is the plan.

Upstairs, there are four bedrooms, a full bath, and a master bath, plus a linen closet!!!  Of the three regular bedrooms, Ryan is going to go in the one that shares a wall with our bedroom so that we can hear her, and because it has the most wall space.  We are putting a twin bed up for her and her crib.  Because of her climbing, she can’t be near the window in either bed, so this is the best room for her.  The other two rooms each have two walls with windows and a wall with two closets.  What is that you ask, and abundance of storage, why yes, yes it is!!!

The best part, is that we have a master bathroom and a laundry shoot.  I’m in freaking laundry and private bathroom time Nirvana over here.

There will also be a dedicated guest room (Welcome family and friends, we have a room for you)!, and the other bedroom will be my craft room.  Maybe one day it will be a little boy’s room, or maybe it will remain a craft room.  In the last few years I have learned that planning your life out is useless, we’re taking what comes our way.

Here she is:

House

 

 

One Year Surgiversary Celebration

Mommy I feel funnyFriday was Ryan’s one year Surgiversary.  It was a day long celebration.  We began with a little party at school.  Micah and I read the class a story about a little girl with Epilepsy, called Mommy, I Feel Funny!

We had to paraphrase a lot of it, so that we didn’t scare her classmates.  We tried.  I also cut out brain shapes from purple sponges, so that we could use them as stamps in an art project, and I modified a page from; My First Book About the Brain, to use as a coloring page.

untitledI thought that we’d finish up with purple cupcakes and a group photo.  Hilarious.  I was an Art History Major who worked in a bank, Micah was a Marketing Major who works for a Civil Engineering firm.  What we are not is special education pre-school teachers, and it was so, so very evident.  These amazing kids wizzed through these activities in seconds.  One is lactose intolerant and couldn’t have the cupcake and a few of them don’t like to be in pictures or sit still.  The Aide’s were amazing, they made us feel welcome, they were all in Purple, one even had purple shoes on.  The kids were in purple, with two of the little boys wearing little girl shirts, because that is all that there Mom’s could find in purple.  I was so touched by this, it sounds lame but it really didn’t occur to me that little boys don’t have stacks of purple shirts in their drawers the way that Ryan does.  I really didn’t think of it, I swear.  This over thinker was busy tracing brain shapes on to purple sponges.

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After school, I decided it would be a good idea to let Ryan take a nap before her family pizza party celebration dinner.  MISTAKE, MISTAKE, MISTAKE.  She woke up, so super crabby.  It took about an hour for her to come around.

She did come around though, she played beside her cousin Patrick, he taught her how to dance with balloon’s and she even held his hand and my hand and danced with us.  This dancing is a new thing for Ryan and I love it.  I showed her once, and she got it, and now she even grabs my hands to do it sometimes.  She shared a slice of Pizza with Auntie Kimmie, goofed around with Aunt Shannon, wore a new purple dress from Grandma and Grandpa, and ran by her Uncles Bill & Paul as fast as she could.  All in all a wonderful first surgiversary!

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What a difference a year makes

PJ'sYou know me, big Dinah Washington fan!

I keep humming her song, What a Difference a Day Makes.  Here is a snippet

What a diff’rence a day made
Twenty-four little hours
Brought the sun and the flowers
Where there used to be rain

It is totally schmaltzy but when I think of where I was emotionally last year, I just keep happily humming this song.  Last year, I was scared off of my ass that Ryan would die during her brain surgery.  The surgery was 24 hours away and I didn’t know how to handle my fears.  I tried to run away from it, I tried to prepare for it, I thought about walking in to traffic if she didn’t make it,  I begged Micah to agree with me, that if she died we would runaway, flee our lives, empty our retirement accounts and leave the country rather than face the life we’d known.  How could I deal with all of our loved one’s feelings of loss and sadness for us & Ryan.

I didn’t sleep, I picked a fight with Micah, I don’t even know about what.  I shut down.  As you know Ryan made it, made it through with flying colors and I am finally starting to believe it, and feel happiness again in the little things.

Tomorrow we are celebrating her one year surgiversary and we are all wearing purple, eating things colored purple, and her teachers and classmates are throwing her a little party.

What a difference a year makes

8,765 joyous hours

Saw loss of hair follicles and a few chompers

I’ll end this tedious refrain!

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No School Today

School was cancelled for Ryan today, it is really cold here, and for all of the children’s safety during the commute to and fro, they shut-er-down.  We were just getting out of our stir crazy, home for two weeks mode and well here we are again.  This time though, we have a lot more clean clothes and snacks at our disposal.  We also had a very nice visit from a family friend, so that really helped pass the time.

Things with the “new home” purchase are getting a little rough, we might have to go back to the drawing board.  The inspection found some things that we just can’t bend on.  She either needs to fix them or provide a full credit.  We will see what happens, but we have reconciled that if not we will walk away and find another house.  This house is great, but any house that we find will need some “Ryan” modifications, so we need to keep all of our available cash for those “Ryan jobs”, not for things like siding repairs and attic insulation.  We aren’t intending to buy a fixer this time, which is concession from my and Micah’s hearts already.

Luckily, we are in the ideal situation to be looking for a house.  Our other house sold, we have the cash in the bank and we are renting from family, and so far Grandma isn’t kicking us out.  We will never get this situation again, so we have time to make sure that we get the house that works best for our family.  At the same time I am sure our stir craziness will increase as the weather gets worse.  You should be hearing a very sarcastic violin right now and want to punch me.

I wish that we could go on that HGTV show “Fixer Upper”, what I really wish is that I was Nicole Curtis and I could just do it all myself, and have those arms.

Tuesday was perfect for Ryan to wear her white sweater shrug.  I love it.

Tuesday was perfect for Ryan to wear her white sweater shrug. I love it.

Dancing, we are working on it

A lot of Toddler’s dance.  I love it, they are so cute and energetic.  Jumping, swishing, swaying and laughing.  This weekend Ryan and I started dancing together.  We hold hands, we sway back and forth, and she smiles.  My girl smiles, when she “dances” with me.  She keeps coming up to me and grabbing my hands and she moves to the right or the left, following my lead.

We also started jumping on our new blue crash pad.  She hold my hands and she bends her knees and straightens them and then does it again, and again.  She is working on jumping and again she is smiling.

She is almost to the halfway point on decreasing one of her meds, and tomorrow she is getting evaluated for ABA therapy, but today we jumped and we danced!

 

Holiday Parties with a Special Needs Child

We have been lucky enough to have been invited to a bunch of Christmas parties this year, yet attended few.  Why?  Do we just want to be shut-ins?  do I not want to put a bra or make-up on? Are we tired of buying the obligatory bottle of wine/box of candy? No, Yes, and No.  The truth is Ryan.

Ryan is really hard in a new house.  Ryan plays in every single toilet that she see’s, she lifts the seat, plays in the water, and then licks her fingers.  Mmmmm.  I can ask my family to keep all bathroom doors shut at all times, but I don’t feel comfortable asking friends/colleagues/acquaintances to do so.  Our Pickle can go up and down stairs, but she can’t be trusted.  She doesn’t understand safety, so she will just fling herself off of stairs when she is tired of descending.  I have mentioned before how she loves to drop to her tummy and do a reverse snow angel on the floor, and possibly lick it.  She climbs in to fireplaces, she pulls down ornaments, breaks them, and pushes Christmas tree’s over.  She is a cyclone to drinking glasses, most folks put a glasses on a coffee table or an end table, and I can not convey to you how quickly Ryan will knock them over, break them, or take a swig.  She loves to play in a garbage can and mmmmm mmmm, lick it.  My favorite is when she gets right in to folks personal space, I get really tired of pulling her out of stranger’s crotches, and even family members.  Really tired.

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I might be at a super fun birthday party, but I just want to lay on this basketball hoop stand!

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I run really fast, and I love it. Mommy and Daddy better keep up!

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All I wanted to do was to lay on this floor, and look at the little world below! Happy Memorial Day

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Uncle Matt found out what happens when you try to pick me up!

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Wait Mommy, let’s check out these bricks on the porch a few more times before school.

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At a huge party, a children’s performer is singing, all of the other kids are jumping and Ryan is touching the pavement.

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Easter Egg hunt, who care’s Mom, check out this chain link fence

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I thought I wanted to run in this park, and then I found a sewer grate that I could investigate.

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I have to feel this bench, check out all of those HOLES!

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Patrick you need to learn to keep a closer eye on your food. I am always lying in wait!

It sound like I am blaming her, and I don’t mean too.  What I am trying to explain is that I am often too tired.  Just too tired to do it.  I have been very under the weather this holiday season, and today when we didn’t go to my beloved Aunt’s house, it was because of the above reasons and because I didn’t want to saddle Micah 100% with the job.   My Aunt and Uncle are awesome, but their youngest child is nineteen, and none of the grandkids are cognitively impaired.

Our favorite party house is a Toddler house or other special homes.  Better yet, our favorite thing is to just have people to our house.  Where I only have to police the glasses and the front door, herein lies the rub, our house is less than a thousand square feet.  So what I am really saying is that we can’t wait until we move in to our new (old) house.

We are going to set up a huge area of the basement as a play room.  Every cabinet will have child safety latches, every basement door will have a high deadbolt, every window will lock, and the fireplace will be removed.  The yard is flat and will be fenced, and there will be gates in front of all stairs.  I’m getting warm and fuzzy thinking of it.

Get ready, Micah makes a mean deviled egg and in 2015 we are going to have all of you over!

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.

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