CA or Bust = Bust

imageToday we were supposed to go to California. A long awaited trip for Ryan Margaret to see/meet Micah’s Mom and her side of the family, and to stay with Micah’s other Aunt and meet her friends.

We were also going to take Ryan to Disneyland for the first time! The CA cousin contingent and Ryan were going to tear up those Tea Cups!!!!!!!

I had Ryan’s toddler version of a maxi dress and straw hat ready for our trip to the OC! Vicki Gunvalson watch 2014 will not yet commence for us it seems.

Sunday I started to feel like crud and yesterday Ryan got the bug. I noticed that she wasn’t herself, I went on seizure watch paranoia high alert. Then this morning when she woke up with a fever and a green stuffed runny nose, the decision was made.

Fever’s and flights are a bad idea. Seizures can be brought on by fevers.  And every time that we take a trip and Ryan is a little under the weather, she ends up hospitalized.

Not hospitalized because she is so sick (generally).  Hospitalized because she has so many issues and most emergency room Interns get spooked and admit her to “be safe”.  We postponed the trip and we are staying home and visiting our Doctor’s.  As much as I support St. Jude’s I don’t want Ryan to visit. Even if it means we miss out on an opportunity to meet Jennifer Aniston or Marlo Thomas.

Like the responsible parents we try to be, Micah took Ryan to her Pediatrician and we called her OH Neurologist.  I passed out on the couch. The advise is to keep watching her fever and keep her well hydrated.  Everytime the kid looks at me too long or rolls her eyes I panic that it’s a seizure, so the advise for me is to take a chill pill.

Couch snuggles are back though, and those make me happy!

 

Registration

I am obsessed OBSESSED with Gone Girl.  I am years late to the party I know, but I can not stop listening to this book.  I started on my drive two and fro Ohio last weekend, and now I am finding reasons to drive around.  I have also been listening to it in the house while I do chores, take a bath (you can’t hear an I-phone from the shower, hello), or work on Ryan’s school registration forms.

These registration forms are hurting my hand and my heart.  Our little girl is becoming a big girl.  She is going to be going off to school five days a week, in just two weeks.  Our very sanitized version of Gone Girl.

How am I going to make it through the days without my Lovie.  I used to miss her when she was just in the carseat sleeping behind me as I drove around.  Now I’m going to have to drop her off and pick her up, separated for hours and hours every day.

This is what Micah has to deal with all of the time, I should cut him more slack.  How is it that I want time to myself, yet I’ll be so lonely without my Bestie around all day.  A quandary that all parents find themselves in, but it doesn’t make it easier.

How did you get through it? I know that this is what is undoubtedly best for Ryan, but I will be in tears in the parking lot?

Maybe I’ll stay, parked in the car listening to Gone Girl again, and again, and again, until I’m ready to go?

AFO’s and side yard FUN

Today Ryan got her AFO’s and she also got some really expensive new kicks.  Don’t worry I’m not going to get on my soapbox,.  Yes special needs stuff is insanely expensive but I didn’t want good enough shoes.  I wanted the best.  I want to give this experiment the best chance of working.  So I wanted the lightest shoes that I could find, to balance the clunkiness of the braces.  I also wanted socks that would protect her shins and calves and yet breathe.  Since I wanted the best, I paid for the best.

We had such a nice experience at the shoe store.  The store is locally/family owned (love shopping local).  I walked in and the first salesperson I came across was really friendly and held the door for me & the stroller.  Do you know how many people don’t offer this simple kindness???? Tons, and tons, and tons

When I told her what I was looking for, she said “let me get my Dad, he is the best for special fittings”.  No problem, no question, no irritation.  He came right out, asked to see the braces, and he knew them.  He knew that they were articulated AFO’s versus standard AFO’s.  He measured Ryan’s foot on it’s own, and then in the brace.  He watched her walk on her own and with the braces.  He came out with a few pairs to try on.  The AFO and all of it’s buckles force us in to a W I D E  shoe.  He told me that if we have any struggles with the velco straps no reaching (they do, but there isn’t a lot of room left), to bring the shoes back in and he’ll have his shoemaker extend the straps, at no charge.  I bought Ryan some tennies and some black mary jane’s.

The owner engaged with Ryan, talked to her, but not down to her, told me that he recognized her from some of our other visits (they sell really cute headbands and clothes too).  I told him that I was getting Ryan’s three year photo taken next week, and he asked me to bring a print in.  That he would love to have Ryan’s picture up on their wall.

This man could have sold me anything he was so kind and caring, yet there was no pity in his eyes.  You know that this will be Ryan’s store forever now.   He saw my girl for being as special as I see her.

Below is a video of her in the AFO’s today and then after the picture a video of her running pre-surgery and pre-AFO.  So you can compare her stability and speed.

AFO Video AFO's we got em Running Before

 

Maybe this gentle and kind man knew that Ryan had a new outdoor play area at home.  I bought a temporary dog fence and a climber.  Hopeful that The Amazing Climbing Ryan will climb less inside if she can climb more outside.  So we cleaned up the side yard (wood is all gone now) added Ryan’s water table and slide and the kid has freedom and safety.  It does my nervous heart good to watch her enjoying herself the way a three year old should.

Outdoor Climber Outside Climber 2

Acceptance, my continuance of a life’s work in progress

I read a great blog post today by a Mom who doesn’t focus on the milestones that have not been met,  rather she focuses on all of her child’s achievements.

http://imjuliasmom.blogspot.com/2013/10/it-really-is-little-things.html?showComment=1406329114040#c553847800168099199

This is something that I would love to be able to naturally do.  I would love to celebrate that today Ryan tweaked my nose (which she did)!, but my mind goes to did she touch my nose to get me to “honk” or did she just touch my nose because it was very close to her face, or because it is so very big?  I play the typical parenting game of “where is your nose” all of the time with Ryan, I do my nose, I do her nose, I do my nose, I do her nose.  Ryan does not engage in the game.  I squeeze Ryan’s nose and make a honking name, and she doesn’t laugh.  My antics are another annoyance that Ryan endures.

Then I beat myself up when I read a post by another Mother and I chastise myself for not being uniformly accepting and celebrate each and every achievement the way that she seems to.

I wonder how I would be doing had no one ever assured me that Ryan’s problems where only medical.  That once we got on top of her medical issues she would be “fine”.  I remember back in the NICU I kept asking whether or not her brain was ok, and they all assured us that it was, because Ryan tracked so well.  She was so aware.  She never desatted, her brain was fine, and maybe back then it was.  I don’t know when the seizures started and I don’t know if I’ll every forgive my Bachelor’s of Arts ass for not figuring it out sooner.

At my worst at night when I can’t sleep I wonder, if she’d been born with Down Syndrome, would I have just grieved right away and moved to acceptance now.  It has been three years and it has been one year, and it has been six months, and it has been two weeks.  Acceptance to me doesn’t mean that I wouldn’t continually fight for all that Ryan needs and deserves to be the best darn Ryan that she can be.  Acceptance to me means, that I can look in the mirror every day and not think that it’s all almost over, that if I just did more or worked harder, bought one more toy, that I could “fix” her.  When will I realized that parenting my perfect Ryan is “fixing” me.

splash pad 2 Splash Pad 1 splash pad 3

Birthday Party!

Ryan had a wonderful birthday party last weekend.  I was a little frantic getting ready for it, as always.  Micah, his Dad, his Aunt, my BFF, my brother & his family as well as our friend and photographer helped so much.  They helped me with food, set up, clean up, hauling, decorating and corralling all of the little superhero’s.  I should say that I planned the party, but they actually all threw the party.  Once the stress gets me I just flake out and start nervous talking.  My niece chased the birthday girl around and I just tried to be as social as possible.

I don’t know about all of you, but I barely spend anytime with my girl when we throw her a party.  I spend so much time greeting the guests and catching up, that I feel like I don’t focus enough on my very own Pickle.  After each party, I feel so guilty that I didn’t enjoy her more.  Has anyone else experienced this, or could it be just my crazy and my Catholic guilt?

We got all of the photos from the photographer but they are too big for the blog I guess.  I’m going to have to figure it out, because twenty five kids dressed up is too adorable not to share!

Ryan and Mommy 2

Articulated AFO’s fit and ordered

Last week we took Ryan downtown to meet with an Orthotist.  He put casts on her legs and fit her for some custom articulated AFO’s.  What are AFO’s and why is Ryan (who can walk) getting them?

http://www.pediatricapta.org/consumer-patient-information/pdfs/AFO%20Fact%20Sheet.pdf

Ryan is getting AFO’s because she walks and she runs, but she does not focus.  She runs as if she is about to fall, she goes from thing to thing in a scattered manner.  The AFO’s are going to (hopefully) calm her down, as well as give her more stability.  The theory is that she’ll be more grounded on her bottom half so that she can focus her own energy on calming her top half.

We met the Orthotist and he was a master of efficiency.  He only had to cast each of her legs once.  Micah being able to join us was also very helpful.  He held Ryan and sang to her, while I sat on the floor and kept her legs still so that the Orthotist could work.  AFO 1 AFO 2

Above are the casts and below is what the finished product will look like.  I picked this exact pattern, because it’s purple and that is the color for epilepsy awareness.  I order most everything for Ryan these days in purple.  Luckily it also looks great on her.

Micah is having a hard time with the AFO’s.  He doesn’t want to see her in the leg braces.  He is afraid that she won’t be able to manage at the park as well as she does now.  I think that he is afraid that she will look like she has a problem.  That he will experience the “poor kid” looks from strangers.  My heart brakes for him, it is how I felt when I took her out in her helmet.  it is why I avoided taking her out in her helmet.  I said that I didn’t want to expose her to danger, but I also didn’t want to expose myself to the looks.  I hate the freaking looks.  The helmet helped Ryan as will the AFO’s and we will do it, but knowing it and accepting it aren’t the same things.

 

Photo from: http://www.orthomerica.com/tcflex

Photo from: http://www.orthomerica.com/tcflex

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.

IMG_0426 IMG_0496 IMG_0653

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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