Friendship

An overwhelming worry that I have regarding Ryan and her future pertain to friendship.  I don’t worry that she’ll never understand algebra or PI, I worry that she’ll never have a real friend.  I have been so lucky to have such wonderful friends around me these last few years.

Some friends don’t know what to do so they do nothing, some don’t know what to say so they say nothing, and one told me that my life was too hard for him, and that he was in a selfish place because of the moon and his astrological sign or something.  Those folks are not the “friends” I am talking about.

The friends that I cherish and count on these days are not all my oldest friends, some are old, some are new, and some are found again.  All have been by my side when I needed them, all have answered my tearful calls and listened, and all understand that I don’t need them to fix my life, I need them to be my friend.

I hope and pray that Ryan makes her own friends in school or clubs or in our neighborhood.  Yet, a lot of my friends have daughters and I hope that those little girls will continue to find places in their hearts for my Ryan as well.

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Another Reason to hate Monday’s

Today is Thursday, today Ryan is at daycare and I am working on her new kitchen, laundry, and appointment schedule.  I love Thursday’s, but this week gave me yet another reason to hate Monday’s.

On Monday we met with a Developmental Pediatrician.  We met with her to discuss Ryan (of course), to discuss Ryan post op, and her developmental progress.  These meetings are painless yet gut wrenching.  Ryan runs around playing, being assessed by an OT, a PT, a Speech Path, two Residents, and the Doctor.

Micah and I sit in two chairs against a wall, we are asked a barrage of questions, but asked not to interrupt Ryan while they assess her.  They go over all of the forms that I’ve already filled out, her history, her first surgery, her second surgery, her third surgery, her fourth, etc.., etc.. and then we discuss her brain surgery.

What did I expect from this meeting? The truth is that my biggest fear is that they would determine that Ryan is Autistic.  Another diagnosis, a diagnosis that I had convinced myself I actually wanted.  A few months ago thinking that she was Autistic had me in tears, but now that I know how insurance works (and doesn’t work).  An Autism Spectrum Disorder diagnosis would mean that Ryan could try ABA therapy on Insurance’s dime, additionally they’d pay her bills without all of the questioning and appeals, an ASD diagnosis I’d convinced myself wouldn’t be so bad.  Ryan is how she is, so those words wouldn’t change her, she is how she is.

They didn’t tell us that she was on the spectrum, they told us that she is developmentally between six months and a year, they told us that she is developmentally too young to assess for Autism.  They told us that she should be progressing more at this point, that all of the extra therapies we are taking her too may be overkill, because she does not understand.  Cognitively we should expect little improvement, that she may cognitively be six months to a year for the rest of her life.  For the rest of her life, as she is now, for the rest of her life.

She told us to enjoy her and to continue with her EI therapies, and that ABA therapy would not help Ryan much.  Sure she might learn how to do a few things sooner, but she likely will not get much out of it.  For the rest of her life as she is right now.

This Doctor, who tried to steal my HOPE, also told me that she never took care of a child who’d had a cortical resection before.  How dare she, how dare she, why did I let her, why do I continue to let these jerks steal my HOPE for Ryan.

I want a crystal ball, I want someone to see my girl that way that I see her, not on paper, but in real life.  I want them to see her climbing on a chair to get to the end table, to reach up on to the box that sits atop it and hold my soda.  My daily fast food soda that Ryan is never allowed to have a sip of, but she sees a cup with a straw in it and knows that it’s a drink and she wants it, so she figured out how to get to it.

Ryan is two and a half years old, three months out of brain surgery and this Developmental Pediatrician thinks that this is it.  That is my biggest fear.  Here is a snapshot of daily life with Ryan, and why I think she made this determination.

She wakes up, she starts babbling, I go in and get her.  I smile and say good morning, perhaps sing her a song.  I say, uppy, uppy, uppy a few times and put my arms out.  Ryan sits in her crib and mouths her Doc. McStuffins doll.  She might stand up and she might eventually put her arms out for “uppy”, but likely I’ll give up and just get her out.

It’s time to get dressed, I get her clothes together, she is in her room playing.  I call her to come to me so I can dress her.  She doesn’t turn her head.  I call her name a few more times, and there is no acknowledgement.  I hit her favorite toy, so that it makes a noise and perhaps she’ll turn her head in recognition, but likely not.  I go get her and dress her

I pick her up from daycare and she is running around with her adorable helmet on.  She sits on a bench, I sneak in and sit next to her hoping that she’ll notice me.  I’m on her left side, so she should, but she doesn’t.  She gets up and runs to the other side of the room.  Then I start talking to her Teacher and eventually Ryan hears my voice and she comes around.  But she just comes near me, not in to my arms, not with arms raised for uppy, uppy, uppy.  Just nearby.

Ryan is learning, but Ryan is behind, Ryan is my heart and my heartbreak.

LOVE IT or LIST IT????

Micah and I have some huge life decisions to make.  These decisions of course are based on Ryan and for Ryan, but that doesn’t make it easier.

Here is the skinny and I will try my darndest to be precise.

Ryan is starting pre-school in August, and we want to be settled.  She has been through so much, and for her success, continuity is really a key factor.  So for our family, wherever she starts pre-school is where she is staying and where we are living indefinitely.

We are also tired of being in limbo.  I really miss our things, I really like to set up house and make a home.  Our permanent home is what I crave, no matter how nice these last two rentals have been, I want a home.

We live in one suburb right now in a rental home, this suburb has an amazing school district and a Co-Op for special needs kids within the special education Dept.  Recently we met with the school district Rep. to discuss Ryan’s upcoming educational journey.  We were very impressed.  Sounds great right, and it would be except for this one pesky problem.

WE LOVE OUR HOUSE, the one that we own in another suburb, in another school district all together.  The school district there is great too, but is it as cooperative?

Exterior 2012

Our house, right before we replaced the downstairs windows

It’s not even just that Sophie’s Choice that is the issue.  The issue is that even if we LOVE both school’s equally our house is our house and our Ryan and her needs are Ryan and her needs.  The two don’t seem to be lining up.

Our house is about a hundred years old and before we moved to TX last January (and rented it out) we spent three years working on it.  New windows, new electric, new I-Beam and footings, new water heater, roof, gutters, the list goes on and on.  The house though is still not “Ryan Ready”.  It needs a lot more work to be ready and safe for our special girl.  A typical family would be well served in this house, but Ryan isn’t typical   A sensory gym could be built, stairs can be modified, walls can be knocked down to improve sight lines.  Ryan can not be trusted on her own, and I don’t want her to be stuck in the basement all of the time, because that is all that we can afford to do.  So do the work and Love it?

Or do we List it?  Buy a house here in an area that is lovely and safe.  A house that is about twenty years old and doesn’t have as many issues as our old one, do we buy a turn key, no character house that has a fence, open floor plan, a basement, and forced air and heat?

Ryan’s needs may grow less as she continues to improve.  She may learn that it isn’t safe to hurl herself off of or down stairs, she may learn to not run in to the street (we have no fence and live on a corner),  she may stop bumping in to everything and falling everywhere (steel radiator’s anyone).  If we give up the house we love, to buy a good enough house in a more affordable suburb, will we eventually regret it?  Though Ryan is the most important thing in our lives, our happiness matters too.

We love our old house with all of it’s charm.  We love our “in town” location at the house.  The suburb we live in right now, also has a cute little downtown area, but the houses in it are also 100 year old.  The ones that have been re-modeled we can’t afford and buying a house that needs remodeling would be idiotic, knowing our situation.

We need turn key, move in ready, if we decide to list it.

Friends, family, and neighbors are a factor. Where we own we have a huge support network, so LOVE IT right!! Where we would buy is a lot closer to family so LIST IT right??

Micah’s commute to work on the train is another factor.  The house we own is close enough to the train that he can walk, so we don’t need to buy a second car.  The house that we would likely buy here, would be too far to walk to the train, so we would buy a new house and a car for Micah.

So let me know what you think?? Let me know by leaving a comment, should we love it or should we list it?

How did this happen?

Micah, Ryan, and I have all been back in IL longer than we were in TX.  I can’t believe that we were only in Austin for seven months and we’ve been back for over eight.  Time fly’s when you are stressed out.

For eight months we’ve been sharing 900 square feet home with one bathroom.  For eight months we have not fully finished un-packing the master bedroom.  For eight months we have been living with one car.

In those same eight months Ryan has had 3 multi-day EEG’s, one CAT Scan, one Tesla MRI, one regular MRI, one surgical procedure to check out her throat and lungs, one brain surgery and over 200 hours of Developmental and Restorative Therapy.

Great things that have happened in these eight months!

  • we are again living near an extensive support system
  • we have witnessed the end of Ryan’s 100′s of seizures
  • we have transitioned Ryan away from the bottle, with no ramifications
  • we have witnessed Ryan finally making cognitive and speech progress, slowly but it’s happening
  • we have begun the process of socializing Ryan, and she is thriving
  • we have put together a team of Doctors, Therapists, and Social Workers that we believe in

What’ next??? Figuring out the best fit for Ryan in the school system, working on Augmentative Communication with Ryan to help ease her frustration and I am going to work on taking some time for myself and to stop crying

But the best news (other than the seizures of course) I found a new play kitchen for only $6.00 yesterday!!!!

Weekend Project Fun for ME!

Keep On, Keeping On

Ryan has a big week coming up.  A second opinion with a Dentist about performing a root canal vs. pulling the tooth, and a non-related Surgical consult.  We will be discussing her umbilical hernia and chest scar tissue, with a new Surgeon.  Hopefully we can get all procedures (dental and surgical) done at once, since they are both with the same hospital and this will be her last sedation for a very, very, long time.

This weekend we went to our nephew’s first birthday party, we had a great time.  It was also the first time that a lot of our family had the chance to see Ryan in person since she’s been home.  Everyone had such kind things to say, about her progress, her hair growth, and our work with her.  I am trying so hard to believe it, to take a compliment, to believe that we are doing our best and accept, that that our best is good enough.

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I didn’t go around and thank everyone the way I should have for all of their support.  I stuck my mug behind my camera or chased Ryan.  I didn’t want to take the shine off of our nephew’s day, and I want to move on.  I am so proud of Ryan, but I am also not always ready to be brought back to those dark days, to talk about the details.  I hope that we don’t seem selfish or rude, we are just doing our best.  Always trying to do our best.

Every new day brings new things, so we are always moving forward.

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Ryan dumps water out of her cups now when she is in the tub!!! And she doesn’t mind when you wash her hair anymore, or dump water over her head.  The splashing I could do without, but she loves it so much, that I let it go, likely too often.  A brat I’m perhaps creating, but a brat who knows exactly what she is doing!!!!

 

Build them up, she’ll knock them down

Ryan has been in daycare for only a few weeks, and she is already thriving.

I picked her up today and it was babble city, we went to Target and the babbling continued.  I love it, and my apologies to everyone we pass, because I pretend that it’s a conversation and answer each babble back.  I could say that I’m encouraging her speech, but I’m kind of lonely and want someone to talk to.

We’ve been told that when the other kids build block towers she runs up and knocks them down and then laughs and runs away.  I am sure that these children are annoyed, but developmentally this is great for Ryan.  I’m hoping that soon she’ll decide that building blocks is also fun, because sometimes Mommy’s like to knock them down and have a laugh too.

They also told us that Ryan is a great eater.  She ate all of her broccoli and cheese today and even stole some from another kid.  I am so encouraged by this and we are going to go back to phasing out the amount that we use her G-tube.  I’d always rather her eat by mouth, and that is all that she does in daycare.  While she is there, she is getting hungry, so she is eating.  Hip, Hip, Hooray!!!!  This will be a learning curve for Mom and Dad we are so programmed to obsess about her throat, her motility, her puking, possibly aspirating, her puking and her puking.  Carrie, let daycare be your guide.

Grading, not in the way you are likely thinking.  Ryan gets so excited that she has been smiling while she smacks you in the face or grabs your face and pushes it.  It’s called grading, and Ryan needs a lot of work on it.  She doesn’t distinguish how much force she needs to put in to throwing a toy versus touching your face.  The result is her so happy and smiling while she slaps you.  Being around a lot of other kids and socializing more should help this.  Fingers crossed, because it hurts.  Below she is attacking her cousin Molly during Christmas 2012, which is when I believe her seizures started and her development really dropped off.

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And finally the Teacher told me that they went for a walk around the neighborhood, with Ryan in the front stroller position.  She loves a good walk, but this time when they turned the corner to go back to “school”, Ryan started fussing.  She seemed to know that they were heading back inside and that the walk was over.  She didn’t like it.  Take that cognition!

 

Epic kitchen fail

I have become obsessed with Pinterest and blogs about “making-over” a play kitchen for Ryan. This has seriously excited me beyond acceptable levels.  Look at how cute this little kitchen that I found on Google Images is:

play kitchen idea

I bought a kitchenette by Circo at a thrift shop for $10.00 and a Land of Nod Fridge off of Craigslist. The Fridge is staying as is, because it’s awesome as is. The kitchen ehhhh.

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So to Home Depot I went, My budget was supposed to be about $30.00, I busted through that very quickly.  I bought a silver ”tin” ceiling tile to use as a backsplash, wood like drawer liner for shelves, paint to re-create a soapstone counter-top and Navy blue spray paint to re-do the range.  My range was going to be the focus, I planned it out to look like the La Cornue French range that I saw at Abt once and subsequently on “The Fabulous Beekman Boys” and in many design magazines.  I giddily went planning along.

 

Kitchen Inspiration

A 10K plus range, my mock up, would be the only way this thing would ever be mine.

A few days later I took some before pictures and I realized this kitchen is for Ryan, not her Mommy. It should be a bit colorful and appropriate for a little girl. I was doing my dream kitchen, not make a kitchen that would interest Ryan.  So back to Home Depot to buy and return.

I decided to do a stainless Wolf like range and a colorful Moroccan tile inspired paper backsplash. I was so excited that I got started. I spray-painted the microwave and range front silver over the weekend. Shiny silver spray paint takes days to dry properly, so I paused the project to let it dry.

kitchen project

While painting the knobs a bright red by hand Sunday night I realized how short sighted I was still being. This kitchen is supposed to be for Ryan. Our 2.5year old orally fixated special needs girl.  She doesn’t yet know how to pretend play with the kitchen, but there is one thing she surely will do, EAT IT.  So this kitchen and all of it’s flammable, metallic, VOC paint is trash.  How did I put design above my baby when I bought the supplies?  I over think everything, and I mean everything, I just got so carried away.  Back to the drawing board, but this time with vegetable dyed paints I go.

I’m keeping the backsplash paper though, it’s so freaking adorable!  Now all I need to do is find another $10.00 kitchen and I’m on my way.  Thank goodness her birthday isn’t until July and I’ve got some time to go to GARAGE SALES!!!!

Books are for reading, not for Eating

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Ryan and her oral fixations. I wish that the hand wringing had stayed and this one left, Post surgery. Today we took her to the park and the smile was blinding, she was so happy and then the wood chips went in to her mouth.  Ughh   I know that it is a sensory thing, but we are at our wits end. Any suggestions?????

A few quickies

This week has been hectic and productive.

With so many of you we Celebrated Epilepsy Awareness day on the 26th.  Our first, hopefully next year we will be more together and maybe do a charity walk or something.  Our goal is to help, rather than need  help.

Epilepsy Awareness Day 3 Epilepsy Awareness Day 2

We had Ryan’s exit meeting/re-evaluation meeting for Early Intervention.  Once a kiddo is 2.5 the exit process begins, but because she had her surgery at 2.5 her meeting was delayed, and because her needs changed as her surgery was successful and her seizures decreased she needed some re-evaluation.  We are phasing out of her restorative therapy at a hardcore therapy center and easing in to only Developmental therapy through Early Intervention.  So from twelve therapies a week to fourteen for a few weeks and then back down to twelve.   The good news is that she’ll only be going to one therapy center instead of two, and the rest is in the house.

We are adding vision therapy and assistive technology therapy.  This girl is so busy, her only day off is Sunday.

We talked to the local school Representative about Pre-school and her specific needs.  I liked what she had to say so much, she didn’t seem scared about all of Ryan’s issues at all.  We are touring in a week.

She started back to day care two days a week for socialization and to give me a break.  The first day I used almost all of my time chit chatting with another Mom there.  I had a great time but got little done.  The next day I got a speeding ticket and then spent time with one of my best friends catching up and eating lunch on our sofa.  It was great, we kept joking that I felt like we were 30 again, except we were drinking juice and water instead of beer.

This weekend Micah and I had our taxes done, a real bear this year.  Living in IL, then TX, then IL again, moving expenses and medical expenses, phone calls made to get copies of bills, etc…. a real nightmare.  The upside of all of the paperwork is that we are going to get a refund this year, and we are going to use it towards a sensory gym in our house when we move back this Fall.

School doesn’t have specific OT’s for sensory issues and Ryan has so many, that if we can provide her with some sensory exercises daily before and after school it should help her focus in school.  That’s the theory anyway.

I look forward to sharing that project with you in a few months.  I am very excited about it, and reading a lot on how to do it the best way.  Some photo’s from Pintrest below

Magnetic Playroom Board sensory board 1

I am also re-habbing a Goodwill kitchen for Ryan.  The planning has been very fun, the execution so/so.  I am not the best spray painter.  I hope to share it soon as well.

That’s it for now.

 

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