Keeping up with the (pop in my last name if you know it!)

Ryan is doing well, hasn’t been hospitalized in awhile! We started some new therapies. She has been diagnosed with Apraxia, and has had to start special speech therapy for that and they are combining feeding therapy as well. Hopefully both will help her swallow better and clear her throat more effectively, so she won’t get sick as much. We also brought in manual massage PT, cranial sackerral and that should help her body’s inflammation. All in the name of helping Ryan stay balanced, well, and grounded.¬†

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Ryan likes to vocalize in the bucket, because she likes the echo

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She has started to play with toys in a more appropriate way. This one plays her favorite song, the wheels on the bus!!!

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I bought Ryan a set of Pom Pons and she likes to shake them, even when asked!!!!!!! ūüíó

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She began Equine Therapy, and still loves it.

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And she got a haircut. Bangs to clean it up and shorter to keep it out of her mouth. Kids can actually get hair balls too, and little Miss swallow/small esophagus can’t have that.

        

Updates

image image image image image image image imagei forgot my password for awhile and Ryan was hospitalized for a bit, with some respiratory things. She is fine now and other than hating her stay at the hospital, she was fine, just needed a little extra breathing help and some monitoring.

We had some fashionable weeks at school. I elected to do a crazy dress week and then a Saint Patrick’s Day week.

I am going to take a break from blogging. No big reason, just have a spring break road trip coming up, I need to paint the kitchen cabinets before summer starts and little fingers are around more often, and I am helping a friend out in her shop a few days a week, going to the chiropractor and fighting for Ryan’s safety bed (still).

 

Valentine’s Day Party at School

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Ryan’s boyfriend gave her a balloon!


 

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Ryan made a sensory water bottle. We were really impressed with all of her new skills. Pouring from a pitcher.

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I didn’t know she could frost a cupcake

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Then shake sprinkles on to it.

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And lick the spatula, appropriately

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She made Mommy & Daddy a heart/hand keepsake

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We gave her buddie's felt mustache's and they looked adorable!

We gave her buddie’s felt mustache’s and they looked adorable!

Ryan was still under the weather but not contagious¬†and¬†since Micah was off today for President’s Day anyway we decided that she was well enough to go to school for a little while and attend her class’s¬†Valentine’s Day Party and Micah could join in too.

Ryan’s school was closed Friday instead of today, so the party was a bit late, but a whole awesome.

 

Happy Valentine’s Day!


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Super Bowl Sunday, sporty hearts

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All she needed was LOVE on Monday

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She insisted on the beret for St. Valentin week

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Pre-swim therapy locker room pose. It says, be done with it already lady, I want to get in that pool.

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You can tell she was starting to feel cruddy on Wednesday, but under her heart hoodie, she wanted me to tell you were more hearts on her t-shirt.

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Heart head bands are awesome and her skirt was full of embroidered hearts but she really wasn’t having it anymore re: photos.

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Earlier today, wE may have been in the ER, but we are still all in pink and red and ready to charm some new medical professionals. ūüíó

We have been battling colds, coughs and ear infections this week. Today she has to go to the Emergency room and get an x-Ray and steroids, but she only has bronchitis and not pneumonia so that is a huge blessing. And we made friends at a new hospital.

Last week we also had a great school progress report, a play date with two new little girl friends and their older (talking!!!!) typical brothers and we had new lights in our kitchen, hall, and upstairs baths installed.

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So while the Pickle was away at school making me the cutest Valentine pillow and looking adorable in her Valentine’s week duds, Mommy cleaned up after construction, primed and painted the ceilings and hid from the mice in our basement. Yep, that time of year and the gaps in our garage door seem to act as a Marquee to the mice population of the Midwest. Welcome Mrs. Frisby and family, but leave Shrew and the rats of Nimh behind please.

So tons of traps and bait stations are professionally set now, yet Ryan and Mommy stay upstairs until Daddy gets home.  Once we get the new siding and garage door this spring (fingers crossed) their access will be permanently denied and regular laundry and basement office painting can resume.

Thanks for all of the support and space. We (I) are (am) doing a lot better. Some things do get easier in time, and friends and family make it all bearable.

 

I don’t want to talk about it

We are home from Cleveland. We actually got home on Saturday. We had a drive home that was un-eventful for Ryan and very sniffly and angry for Micah and me. We stopped at our favorite haunts, ate too much junk food and talked a bit.

I didn’t want to talk. I still don’t, but we had to process the trip. We both had to sit with it before we could share it. We had to fall apart and then get our tough shells back on, because once we share it, then the questions and phone calls will begin. All well intentioned and well meaning, but those conversations will make us deal with our news and live in our news, and I, more than Micah, am just not (even now) ready to talk about it.

We are dealing with it. We are caring for Ryan as instructed and talking to her Teachers and Therapists as we need to, but to be honest I haven’t spoke out loud to anyone yet. Even those who I know love me the most.

I have been accused of making all of this about me, of becoming a shell of my former self, of relishing being a pity party and that haunts me as well. ¬†When you share your life, some people feel free to be really mean and judge you and quite honestly these cruelties, veiled in concern have affected me more than I would like and so I am afraid to share, because in the scheme of things that we have been through the news isn’t that bad. ¬†The bad is that it is more fucking bad news and I am so exhausted from getting bad news and being afraid all of the time. ¬†I am tired of having to be strong. ¬†I don’t need pills or a Doctor to help me with this

I need the bad news to stop and I need to embrace my child who has a feeding tube, asthma, Autism, crucial parts of her brain missing, who is non-verbal and globally (which means a ton a ton a ton) delayed. ¬†That was enough, more than enough and I accepted it. I just want her to be a fucking grocery store bagger one day, and now that may not be possible and I can’t bear it.

I don’t need to know that her new EEG is showing that her brain is spiking as she sleeps. ¬†That these spikes are seizure pre-cursors and will require more meds, not less. ¬†I don’t need to hear that the spikes aren’t letting her rest enough and aren’t allowing her development to increase. I don’t need to have to go back to Cleveland for monitoring again this summer and follow up with blood tests (due to increased meds) in between. ¬†I don’t need any of it. ¬†I need enough to finally for once and for all be enough, because our enough is more than enough and more than most people will ever have to go through with their kids at all, and she is only 4.5 years old.

I don’t need the judgements, or the faces, I don’t need the I’m sorry’s. I need the bad news to end and for now, I need privacy and latitude and an embrace, not platitudes and words regarding Ryan’s warrior status or ours. ¬†Despite what some trolls have said, I don’t want all of this attention, I want none of this to be happening, I want our lives to be so typical and so boring, that no one pays much attention.

I have always shared and over shared so I felt obligated to do so here, because I know that we are loved by so many, but even that makes me cry as I feel the weight of all of your disappointment for our family and I feel like we have let you down. That you are mad at me for not seeing a problem, for not knowing, for not being able to fix it

Her chances of remaining seizure free are not as good as they were before.  Her ABA therapy schedule is being doubled and I am just trying to be her Mommy and make sure that she is now and remains the happy easy going girl that she is, because she is what is going to get me through this


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Surgiversary, party of three

Yesterday was the two year anniversary of Ryan’s brain surgery. ¬†We didn’t have a big party, or bring a party to school. We just celebrated at home. I am superstitious and didn’t want to over celebrate until we find out if she is still seizure free later this week. ¬†So I planned on asking folks to wear purple and doing nothing more.

RM has also been very crabby, pulling at her ears and warm lately. So we took her to the Doctor yesterday & our gal has an ear infection and a skin infection.  What a day to party, but an anniversary can not be, will not be, stopped.  Ryan recieved support pictures of so many folks wearing purple, flowers and a handmade doll from other loved ones and to mark the occasion Mommy and Daddy got her a few purple things too.  Daddy is not too happy with Mommy because a purple bikini was in the mix.

So we still weren’t going to do anything, and then I was in Target & saw purple plates, purple cake mix, even purple cheese and tortilla chips and well I just had to.

So I did it up, just for us. We ate in the dining room wearing purple, Ryan in her dress from last year and I pulled out the party trays, I hadn’t put then away yet from Christmas, so really I just dusted them off. ¬†Why have such nice things if you don’t use them.

Micah doesn’t have a purple shirt ( I know) so he festooned himself with Ryan’s accessories and we ate take out, purple cake, blueberries, blackberries with cheese and drank purple Gatorade.

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Party, Surgiversary style!

 

 

 

 

Apres Ski anyone?

Unless today is your first day reading this blog you already know that  I love all things Bravo and making up fashion theme weeks for Ryan.  So why not combine them!

It was cold this week, so I decided to do an Apres Ski fashion week. I like the name of the show Apres Ski, and Whistler seems amazing but the show was kind of eh, and the people not likeable. Ryan’s sweater wardrobe however is on fleek (See I’m cool) and she is very likeable so we needed to share in all of her ski bunny glory

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Monday right before she got yogurt all over herself

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Tuesday, gorgeously awaiting her ABA Therapist

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I called this one Snow Kitty

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A lovely ski bunny

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Purple poncho handmade just for Ryan, her favorite Christmas present and of course, purple for Epilepsy

 

 

 

Tights week

A made up celebratory fashion week,  sure, but very fun and adorable on the perfect model, none the less.

I am loving Mozart in the Jungle on Amazon Prime, reading a great book about the Foster care system, eating crackers with jalape√Īo cheese spread in bed, and I took a shower today. Ryan is taking a nap, later I am having dinner at a friend’s house, life can’t get much better!

Enjoy your weekend! We are buying a LAPTOP!!!!!!!!

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The privacy pop, wah wah wah

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VIDEO ABOVE!

So the privacy pop obviously won’t contain her safely at night, but at least we found out that the concept of a safety bed was a hit. A Huge hit! She likes to be enclosed. She fussed when it was time to get out.

i bought the Privacy Pop a year ago, and then we bought a twin sized aero bed at Christmas. For this or any other bed tent to work, it has to travel and we will always need the aero bed.

We only had it up for a day, and then we took it all down and she was sad. She was just getting so close to flipping the whole thing, or slipping off of the mattress, and getting stuck between the floor and the netting, that for Ryan (me) it was too dangerous.

So im back to the drawing board, for a home & travel bed option. Our Doctor is working on the appeal, I am looking in to more affordable alternatives and fighting a speech eval. Bill for $500, from April 2014 that just showed up. love it!

Ryan’s Surgiversary is coming up. Two years!!

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