What is in a favor?

So I’m in party planning manic mode.  I was talking to two of my friends yesterday about my fervor for this party decor and favor stuff.  I do not know why I get so obsessed about it.  On the surface it could be that I want to give the kids a treat and impress their parents.  I don’t disagree with this theory in part, I do think that I get too caught up with the “Jones’”, but it is more than that.

The favor preparation table

The favor preparation table

I wonder if I am trying to create events like this party so that I can prove to Ryan that she had friends, that she was loved, and maybe one day she’ll understand, what a superhero is, what a superhero she is.  I want to create albums of her early life and I hope so much that one day she looks at them and realizes how many people were always on her side.  How many people always loved and celebrated with her.  Maybe she’ll understand that, and maybe she’ll just like seeing pictures.  I don’t want her to think that we weren’t thrilled that she is our daughter, as she is.  That we didn’t celebrate and accept her all along.

We are so lucky that this little perfect girl chose us.

A great look at our Toothless

I finally got it!!!  It happened our second afternoon in Cleveland.  The elusive picture of Ryan Margaret without her four front teeth.  Enjoy a few glimpses of our happy little Toothless.

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Today was Ryan’s actual birthday and we just chilled.  All of our therapies had to be postponed because of insurance bologna.  Is anyone surprised??  Where she has been going since October for therapy is not in network for our insurance plan.  A possible solution is that I asked them for gap coverage, sadly nothing to do with American Sportswear.  If we can get the gap coverage, we’ll have coverage at a location not in network for network rates.  So I had to cancel this week or pay $180.00 for each of her two appointments if the gap coverage were to be denied.

I said forget about all of it today and I just enjoyed Ryan, I took her for a nice long walk, took her to the park, let her bump her head once when she went down the slide like a big girl, and then  bbq for lunch.  Her pick, honestly (lie).  Tomorrow it will be figuring out insurance bologna for our Pickle and our house, calling in a new script for her feeding tube (which keeps coming out), getting the molds done for her articulated AFO’s and un-packing the last suitcase from our trip to OH.

Ryan’s Birthday Week has begun

The kid is very loved and very lucky, because she gets a whole week of birthday celebrations.  Sunday we had a party with our immediate family.  Tuesday we are going to celebrate with a little cake that she received from her Aunt Annie and Saturday is her big superhero kids party.

This blessed little gal is also going to get a visit from her WA Grandpa and one of her CA Aunt’s next weekend.  A lucky and loved gal indeed.

Here are some of this weekend’s best pictures:

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Her cousin P, he is already looking out for Ryan

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We are missing a few cousins T, G, & A. One had to work and the other two sadly live far away. One day I’ll get a picture for Ryan of her and all of her cousins.

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Queen Ryan Margaret trumped King James in Cleveland last week!

Dr. Naduvil - Neurology

Dr. Naduvil – Neurology. He called Ryan’s progress miraculous and remarkable!!

I mentioned that we were going to Cleveland last week for Ryan’s six month post surgical check up.  What we didn’t know was that Cleveland would go crazy on Friday because LeBron James decided to come home.  That is great, and it was nice to be caught up in all of the excitement.  Nice is all I’ll give Mr. James, because amazing is reserved for my daughter.  What I haven’t told you yet is that we found out that our Ryan Margaret is SEIZURE FREE.

Dr. Bingaman

Dr. Bingaman, whom she adores but she was hungry. He is a master Neurosurgeon.

No brain bleeds and seizure free.  Her Neurologist said that her EEG on Friday was miraculously different than her EEG’s last December.  That you hope to have an outcome as good as this, but you don’t often see it.

So what does this mean for our girl? Well it means that her Mommy and Daddy are thrilled, that she is doing well being off of Sabril and she doesn’t need to go back on it (yeah) and that she doesn’t have to come back until her one year surgical anniversary.

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SEIZURE FREE!

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Wait a minute, if my seizures are gone, do I still get to keep this awesome cape?

We also met with a different Developmental Pediatrician and she was a lot more positive.  She said that it seems that Ryan is making developmental improvements since her surgery, and that she expects that she will continue to make improvements.  This Doctor (unlike the other one) has experience with brain surgery babies/kids and this is her educated opinion.  She did not say that Ryan will be “typical”, but she didn’t think that Ryan would stay a nine month old forever.  What a great birthday gift for our Pickle and our family!!!!!!

SEIZURE FREE!

SEIZURE FREE!

PT’s, DT’s, OT’s, Teachers and Speech Therapists oh my

July 16th, will be the six month anniversary of Ryan’s brain surgery.  I can not believe it, I really can not.  I feel like it was a lifetime ago. It is crazy, if she has only been recovering for six months, then that means that most of the therapists and teachers in her life right now, have only known her for six months or less.  In those six months so many of these people have had such a huge impact.

Ryan’s Daycare Teacher Kris.  Miss Kris and her team always believe in our girl and tell me how smart she is.  Every time I pick her up, they tell me that she did this today, or that today.  She was hungry so she sat in a chair to eat.  She wanted to go to the playground so she reached for the door handle.  She sat on her own for story time, and stayed still for a few minutes.  Miss Kris doesn’t baby her, and Ryan has thrived under these watchful eyes.  The other kids are amazing with Ryan, they all call her name when she gets there, and they all fight to help her with things or hand her things.  She is older than all of them and they are all looking out for her.  It is so sweet & I love these kids and I wish that they could move on to “school” with Ryan this fall.

Danielle, Sandy, Stephanie & Connie are her Speech Therapists and Augmentative Communication Therapists.  Under their care, Ryan has begun to understand so much more.  She is starting to turn when you call her name, she is starting to come near the door, when I ask her to go outside, and she definitely understands asking for “more” food, using sign language and “No, No” when I tell her that as she is climbing on the furniture.  Speech and Aug. Comm. isn’t just about talking or not talking, it’s about understanding language.  This Speech team of Ryan is my rock.  This is Ryan’s biggest area of need and every one of these women is an unstoppable force for our girl.

Mary and Tammy are PT guru’s.  Ryan is doing so well.  Thanks to Mary this kid can climb, she can navigate the playground, she is starting to hang off of everything.  She is becoming a little gymnast, and I can’t wait to sign her up for toddler tumbling in the Fall.  Tammy is strengthening Ryan’s core as well as helping her with all of her sensory issues during aquatic therapy.  Ryan loves the water and she loves working with Tammy.

Andrea, Janet, and Cheri are our favorite Occupational Therapists.   Cheri comes to the house and does a lot of crossing midline work, sensory work and manages all of our Auditory/Swinging OT Therapy.  Cheri is the first one to see Ryan as a superhero, and that feeling is contagious.  Cheri makes her finish her tasks and I love that, even though Ryan does not.  Janet always asks more of Ryan and she always challenges Ryan to rise to the occasion.  Janet takes a holistic approach & is one of the most upbeat people that I have ever met.  We are so lucky that we met her.   Andrea is patient, sweet, and a model of persistence with Ryan.  Andrea makes therapy fun and teaches Ryan things through play.  Ryan always leaves her therapy sessions with Andrea smiling and babbling.

Developmental Therapists are Ryan’s buddies.  They look at Ryan in all areas.  Miss Kristen’s enthusiasim is infectious.  She works on eating, playing, vocalizations, core strength, childhood interactions and everything in between.  Miss Kristen is always smiling and Miss Kristen makes me smile too.  Jotee is Vision DT.  Jotee helps all of Ryan’s therapists with Ryan.  Jotee educates everyone on how Ryan can see and what are the best ways to get Ryan’s attention.  Jotee gets on the floor with Ryan, shows her colors, and textures, and challenges her to see the world in full color versus black & white sideways.

Ryan ages out of Early Intervention on the eve of her third birthday.  That is in eight days, but really for Ryan it is in three days.  We are going to Cleveland for her six month check-up on Tuesday and we are missing three days of therapy.  Unfortunately our insurance won’t pay for us to keep up all of these therapies for Ryan, so we are having to cut way back.  We are going from thirteen therapies a week to five.

We are having to say goodbye to so many of the wonderful women that I mentioned above, and it makes me very sad.  I form bonds with these ladies, I talk to them as if they are my oldest friends, I cry in front of them and I will feel the loss deeply.  I hate doors closing.

Happy 4th of July

It’s the fourth of July and we’ve done nothing Patriotic all day.  Ryan was dressed in red/white/and blue but that’s it.  Micah doesn’t feel well and took a long nap.  Ryan never napped and is fighting a sinus infection, and I am still in a funk.  So Hip Hip Hooray, we are duds today.

My youngest brother and his family were in from Troy, NY this week and we spent a lot of time with them.  Not enough, never enough, but what we had was lovely.  Ryan did all right.  She had a rough time at the zoo, got too hot and we had to leave early.

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She has been vomiting and been sick in her diapers lately, so I am trying to be hyper vigilant regarding the heat and her ability to cool herself.  This darn medicine that she is on, stops her from sweating, so she is really prone to overheating.  It is actually in her IEP that she has to be in an air conditioned classroom. Surprisingly the pre-school isn’t air conditioned already.  They are happily accommodating us, and have already ordered everything.  Isn’t that a great way for Ryan to have already made friends in school!

The next day we had a better visit.  It was at our house and we just chilled out.  Ryan was inside, in her own envt. and she did a lot better, as did I.  When she is off, I am off.  It was a lot cooler, so we took the kiddo’s for a walk.  Baby G had a runny nose and Ryan kept pulling his hair, but I think she loved sharing her wagon.  I loved watching my brother play with her and pull her and his son around the block.  Ryan is doing this thing now, that she doesn’t want to be held, so she treats you like a jungle gym when you hold her.  I know that this one is developmental as well.  She wants to be a big girl, and we are trying, but she isn’t safe on her own and she always kicks off a shoe, so she kind of puts the kibosh on herself.  I got some good photo’s of Uncle Matt struggling with Ryan the climber.

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My brother is eight years younger than I am, and he is all grown up.  I wish that they lived closer and I hope that we’ll have a big enough house next year (wherever it may be), that we can host them for part of their trip.  Oh yeah, we still haven’t decided where we’ll live.  We are still going back and forth.  More another time, because I don’t know what the heck we are going to do.  Decide for me?

IEP Meeting Today

Ughhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

If you have a child who goes through the IEP process then you get this and if you don’t have a child in the IEP Process I’m jealous.  Full on green with envy over here.

http://en.wikipedia.org/wiki/Individualized_Education_Program,

My impression of the IEP: Individualized Education Program, is that it is a legal plan for your child’s special education.  To get an IEP your child has to qualify, and to qualify they have to assess your child in many different areas.  Teachers, Therapists, Administrators, and Parents discuss the determinations.  Decisions are made and annual educational goals are agreed upon.  Hours and Minutes of therapy are suggested, disputed, and modified before all parties are in agreement.  Throughout all of the process today, I cried.

I didn’t cry because they didn’t agree with us, or because they didn’t know what they were talking about, I cry because I know that our little bubble world is over.  I can’t pretend, even to myself anymore that Ryan is going to get over all of this.  I cry because they are right

So a few weeks ago, Ryan was assessed.  No surprise she qualified.  Qualified in MF’n spades.  They qualified her as having multiple disabilities.  Multiple Disabilities is true and I HATE it.  I HATE that they are right, I HATE that she qualifies and I HATE hearing that her annual goals are as basic as putting toys away, going up and down stairs, and communicating an intention.  Those aren’t the exact goals, but they are the gist and my sweet girl can’t do any of those things on her own.

My daughter is Special Needs, My daughter has Multiple Disabilities and it is a lie for me to say things, like I wouldn’t even change her if I could.  Some special needs Mom’s say that, and I wonder if those Mom’s children have physical or cognitive disabilities.  Because I haven’t met many a Mom who has never heard her twelve year old say “I love you” or “Mommy” who would not take the disability away.

I don’t know the life of a Mom who has a child whose body doesn’t cooperate but whose brain and cognitive development is typical.  I don’t want to start a who has it worse special needs mom war.  A battle no one wants to win, and would help none of the children.  What I want to do is convey that for me, it is very difficult to have to constantly qualify Ryan’s disabilities with people because she does appear to have no issues.  She runs and she laughs and her hair is growing back, but she does not understand much.  My precious girl doesn’t hand me anything, whether I ask her to or not.  Yes she is more aware as her meds decrease, but more aware does not mean typical.  This little Lovey can’t ask me to watch Mickey Mouse Club House let alone tell me she’d rather watch Sophia, not with her voice or by pointing.  My beautiful girl can not focus her attention long enough to become a vidiot.

This last weekend we had a family party and I felt like I had to break my Aunt’s heart.  My Aunt hasn’t seen Ryan in a while and for some reason she didn’t understand all of Ryan’s issues.  Maybe she is just hopeful, but I feel like I constantly have to burst folks bubbles for Ryan and for me.  That the brain surgery may have stopped her seizure’s but it didn’t jump start her development.  I hate that I have to manage their expectations, but I love that they are so positive and accepting of Ryan as she is, that they are truly surprised by the permanence of her limitations and I can see their hearts break for me and Micah.  Every time it happens all of our hearts breaks again and again.

Then today, in a room full of people who saw Ryan, who really saw her, determined that she has Multiple Disabilities and my heart still broke.  I hope that in time Micah and I will feel a partnership with the school, that they will help us guide Ryan to achieve her full potential.  I am trying my best to be excited about the school year, hopefully in time I will be.  But today Ughhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh is how I feel.

A Surprise Day at Home

Today Ryan was supposed to go to school.  I dressed her, I fed her, I administered her meds and put on one of her shoes.  The other shoe in my bag, along with a sippy cup and we were ready to go.  One problem, I couldn’t find my keys.  Nothing new, for me, sadly nothing new for me at all.  However, this time I really couldn’t find them.  I eventually called Micah, who was on the train to work, and I asked him if he had my keys.  He told me he had them, they were in his pocket.  I told him to keep going on to work, that we’d make do.

He had a meeting that he couldn’t miss and we certainly weren’t destitute.  I knew that I had a soda in the fridge and a chocolate bar in the drawer, Momma was set.  So instead of going to daycare and therapy today, Ryan had a Mommy & Me day.  Mommy needed the Mommy and Me day.

We went for a walk, we explored the yard, we built block towers (me) and then she took a great long nap.

Here are some of the best pictures, and the evidence that Ryan is a lot more aware these days.  If you look at past pictures, I rarely got one of her looking at the camera, today I got bunches.

Good Looking Ryan 1 Good Looking Ryan2 Good Looking Ryan3 Good Looking Ryan4

Comment Away

I called Tech support and got the comments working again!!!  Please comment, it’s the only way I know that anyone other than my Mom is reading.  A super rambly post to follow:

Ryan’s fever is gone, it was thankfully a one day thing.  Which is great because my baby brother and his family are coming in from New York this weekend and we are very excited.  We are going to celebrate little G’s first birthday and another day we are all taking the kids to the Zoo.  It will be Ryan’s first time.  She will be spending a lot of time with her two little cousins G & P, I hope that they sit still long enough for a photo op.  Hmmmm… What should she wear?

I am also working on the planning for Ryan’s first “kids” birthday party in a few weeks and it’s a Superhero theme!  She is going to be three, and we are going to celebrate the heck out of it.  I’m so overly excited, I etsy’d for hours last night!  The Cricut is coming out next.  You’ve been forewarned, because I will go overboard making stuff, then not have time to put any of it up, but I’ll mention it a few more times.  I am Carrie and I am a craftaholic, I buy a lot of supplies and rarely follow through on the project.  The wonder of me.  Hey did you check out that play kitchen I haven’t finished yet?  This affliction has nothing to do with Ryan or being a special needs Mom, I’ve lacked crafting follow through for years.  I bought some fabric in Paris in 2000, and I have still done nothing with it.  Rolls of wallpaper, pints of paint, stencils never used, fabric in plastic totes, piles of paper, and stacks of garbage picked or Goodwill/garage sale furniture finds.

Back to the party, we are inviting all of the kids from “school? and all of our friends and family members with little kids to the party.  I want it to be mayhem.  I want Ryan running around with all of these little kids and just being silly and happy.  I want to take a ton of pictures and celebrate the crap out of our little superhero, while we honor others.

We are asking every guest to sponsor another tiny superhero and help them get a cape rather than give Ryan a gift.   We were so honored to get one of these beauties for Ryan, right after her surgery, and I can’t think of a better way to say thank you.

Ryan when she got her cape, earlier this year

Ryan when she got her cape, earlier this year

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www.tinysuperheros.com

A great idea to honor and empower kids who may be having a hard time, by making them feel like a Superhero!

A great idea to honor and empower kids who may be having a hard time, by making them feel like a Superhero!

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