Thanksgiving

It’s about time that I start getting ready for Thanksgiving.  My Mom is having it, but I am making a few things, and my cupboards are bare, so off to the grocery store I go.  I feel like Thanksgiving came in with a rush this year.  Wasn’t yesterday Halloween?

Last year, Ryan’s upcoming surgery was looming.  Here seizures were increasing, she was dropping left and right, and we were on hyper alert 24/7.  I am thankful beyond anything else that those days are gone for now.  I hope gone forever.

I am really looking forward to the Dog Show as well, and we might have found a house!

Thanksgiving’s Past

Ball

2011

IMG_0190

2012

Ryan Gasworks Park.4

2013

 

Recovery and oh yeah, Ryan had surgery this week

On Wednesday Ryan had ear tubes replaced, her adenoids removed, an endoscopy and an ABR hearing test.  How did it go? Well, great, ehhh, and great.

The ear tubes were more maintenance than anything.  She had ear tubes placed in May 2013, and one fell out a while ago, so she needed it replaced, so they just went ahead and did both ears.  The adenoids were removed because of her history with ear and sinus infections.  She is doing well, however her recovery isn’t going as easily as we would have liked.  She seemed to have bounced back day one, then that afternoon and the day after she was super crabby, super sore, and kept grabbing at her throat.  She isn’t the best drinker, she can do a sippy cup, but she just doesn’t really like to drink anything.  Juice, water, chocolate milk, it doesn’t matter.  So I kept filling a 10ML syringe with cold water and she was basically sucking it down.

This is definitely where her low level of communication becomes a huge issue.  She keeps fussing, but we don’t know why, she rarely cries and suddenly she is crying with tears streaming down her face, I snuggle her, I put on a cartoon, I give her a little Motrin, offer up a favorite snack and nothing seems to work.  Luckily I recalled that the Doctor said cool water is commonly requested by patients for adenoid removals, and the cool water syringe hit the spot.  For awhile at least.

The ABR hearing test came back as “normal”.  Normal is of course a bad word in the special needs community, but I’ll be brazen and use it here.

The endoscopy showed pooling in her esophagus and her Nissen (fundoplication) has slipped.  http://en.wikipedia.org/wiki/Nissen_fundoplication, if we fix the Nissen it may help reflux but it may increase the pooling.  If the pooling increases too much, then she could hold things in her throat for too long and perhaps she would aspirate.  If we loosen the Nissen then the pooling could decrease but her acid reflux could come back ten fold, and too much acid in your throat makes you miserable and can potentially lead to cancer.  So WTF is how I feel.  WTF, yep it’s blunt and I’m sorry, but my baby has been through so much, we have been through so much and I’m tired.  I love this girl so much, and I am tired of her having to be such a warrior all of the time.  I am tired of being a warrior all of the time.  I am ready for something to just work, and work forever.  She also has a hiatal hernia http://en.wikipedia.org/wiki/Hiatus_hernia, so that is awesome. 

So the Surgeon suggested that she will likely need to have another stomach surgery.  If they end up doing surgery this way, then maybe it will work.  If they do the surgery another way, then maybe it will work and maybe neither will work, and we may have to give up the dream of her continue to eat and drink orally.  Our current Surgeon said that we should watch and see for now, she is spitting up less now, she is eating better now, and maybe she has outgrown her reflux and maybe her cognitive abilities will increase and she will understand how to make herself swallow when food or liquids begin to pool in her throat and well maybe, maybe, maybe.  In the meantime we are getting everything ready to get a second opinion.

I am too sick to go to school, or am I faking it so I can take another bubble bath??

I am too sick for school, but not sick enough for another bubble bath??

 

Christmas Card Photo Session

Obsessed much? Who me? Yes, Yes I am.

Yesterday my Mom and Dad came over to help me do Ryan’s Christmas Card photo shoot.  I’d hired a photographer, but her scheduling and a death in her family thwarted the plan.  Ryan is having a surgical procedure next week, (all is ok, more next week) so I needed to get it done (and I had a coupon and few vouchers I needed to use) Sorry I’ve digressed, back to the photo session.

Why would I need help you ask?  Because I am obsessed.  I want to set the stage, I want Ryan to be styled to perfection and I want her to be looking at the camera.  How did it go? Well the results were good, (two good shots) but the journey was exhausting (hundreds of shots discarded).

My Mom and I set up the area, my Dad kept Ryan busy.  My Mom gave Ryan a bath and did her hair,  I did pre-shoots and checked the light.  My Mom dressed our model (after ironing all of her outfits, thanks Momma) and then all three of us danced around like Monkey’s trying to get Ryan to smile, to look at the camera, to stay in the “staged” area.

After three dresses and one pair of Christmas pj’s I gave up, after countless times of us trying to coral Ryan, and a bag of Pirates Booty I had to face the facts, Ryan doesn’t like photo shoots.  Ryan likes running around.  Ryan finally free went and sat down next to Poppa on the couch and presented her biggest smile of the day.  Where was the camera then?, on the mantle of course.  Then we disassembled and un-wrapped some of the prop presents and Ryan climbed in to one of the boxes, and her second biggest smile of the day shone bright, and where was the camera then? On the counter.

When will I learn, I know my kid, I know that she is adorable and happy, but she is no show pony.  She dances to the beat of her own drummer, and I need to stop trying to make her conform.

Solution? I’m going to take my Dad’s suggestion next year and just put a green blanket over him, and learn Photoshop.  Problem Solved!

 

*Inspection went well, we don’t have the final report yet, but we seem to have to fix a few plumbing things, a pesky kitchen sink drip and a basement laundry sink.  Hopefully performed easily (cheaply) enough.

 

Here are some of the failed shots:

IMG_1936

Pirate booty and wet hair

IMG_1989

I will not keep a bow in my hair Mom, stop trying

IMG_2082.1

I told you to get this headband off of my head.

IMG_2155

I’m going to teach my doll how to get in somersault position

IMG_2206

Thanks Grandma for all of your hard work

IMG_2209

Poppa you are the best, and I love our talks

whirlwind

So it’s been a whirlwind.  We are under contract on the house.  We “sold” it in six days!!! The inspection is tomorrow and I am nervous to put that out in the world.  Fingers crossed that everything goes well, and I didn’t just jinx us.

Back in 2012 when we were planning on permanently moving to TX, we listed the house.  That listing also went under contract (though months after we listed the house and we accepted a total low ball offer, because the market was bad and we were more desperate).  That time I knew that I didn’t want to move, I didn’t know how much I didn’t want to move until the house went under contract and I was so sad.  I was also angry that the “buyers” were stealing our house.  I hated the idea of selling the house then, I felt like we were abandoning our home, giving up on our projects, and leaving all of our friends and family.  Back then we didn’t know that Ryan had Epilepsy, back then I thought that a house was more important than it is.  This time I don’t feel that way.  This time I feel good about the offer, I’m excited because the “buyer” seems to be excited to buy an old house, and doesn’t plan on tearing it down, and this time I am not giving up my emotional stability over some bricks and mortar.

The first sale was called off by the “buyers”, like I said that market was bad a few years ago, and they decided not to buy at all.  We happily rented the house out, moved to TX, and figured we’d move back or sell in a few years.

We thought if we sold it would be to buy in Austin, TX, oh well, that didn’t happen and I don’t mind at all!!!

Here are the finished pictures of our gorgeous first home, we hope to be purchasing our gorgeous second home in the new year!

Cropped Basement Desk

The basement, and the moved radiator

Cropped Basement Playroom

Basement playroom

Cropped Bathroom

Downstairs bath

Cropped Bedroom 2

Upstairs bedroom, staging secret that is an aero bed on some Home Depot buckets!

Cropped Dining Room

Dining room. Check out the patio furniture with a Target tablecloth!

Cropped Master

Master Bedroom

Cropped Stairway

Stiarway, 7.99 lamp from Goodwill

IMG_1895

The mudroom that I spent days and days painting

IMG_1901

Living room with borrowed furniture and an IKEA bureau that is filled with all of my painting crap

IMG_1904

The daybed that I got at an estate sale for Ryan’s upcoming “big girl room”

IMG_1909

All of Ryan’s toys were used in this staging!

IMG_1912

Tandem Room set up as a toddler room, also a sneak peek of what Ryan’s toddler room will look like in the new house

 

 

Happy Halloween

We took a break from all things house so that we could enjoy Ryan’s fourth Halloween.  She was a Princess Fairy, purple chosen for Epilepsy awareness.  She loved the tulle skirt, hated the headband, and barely sat still the whole day, typical Ryan Margaret.

I worked the Halloween party at school, and got to hold her hand during what was supposed to be a Halloween Costume parade at school, however it didn’t end up happening.  The school seemed to forget our special needs class.  This is so very disappointing to me I can not tell you.  I love when Ryan and her friends get to experience the typical childhood events, I need to see these activities, I need to see her included and cheered for by all of the other kids, teachers, and parents.

I am going to talk to the school about this, our multi-needs special-ed kids are at the end of the hallway and they seemed to have just forgotten to get us.  We were the last pick-up, because a lot of our kids struggle with long walks and crowds, so it was planned that way (or so I was told).  I want to say que sera, sera and move on, but I’m too upset to right now.  Our group of six did do a little walk down the hall and around, but the “real” parade was over, so we just passed some closed doors and lockers.  It was lame.  Ok I’ll just take this time to post some pictures and calm my nerves.

IMG_1722

The school parade was a bust, so she decided to just take a seat and feel her favorite outside texture.

IMG_1806

My favorite Fairy pooped from all of the day’s activities

IMG_1702 IMG_1730 IMG_1739 IMG_1743 IMG_1774

Update

Today we are getting carpet laid in the basement.  The window is 8am to 6pm, awesome!  The radiator was moved the other night, and had my GC been doing his job, he would have suggested that we do it before the freaking drywall was done, so that the pipes could be “behind” the wall, but now they aren’t.  So the radiator was moved out of the middle of the room, yeah!!!!, let’s focus on that.

The freaking drop ceiling still looks like crap, but it seems that crap is the best we are going to get.  The GC finally agrees with me, because his lights needed six inches of height to be installed, and the ceiling is only allowing for about three inches of depth.  So we either have to rip the drop ceiling out or change the lighting plan.  Hence lighting plan changed, and we are only paying the original drop ceiling quote.  The plumber also told me that if we’d called him before the drop ceiling was started he could have moved all of those radiator pipes “up” for us, by changing them out to the modern more efficient and smaller radiator pipes.  Hey GC, shouldn’t you have known that too.  Oh well, another reason not to use him again, and remind myself that we are selling this house.  Besides moving the pipes would have added a few thousand to the job, that we simply couldn’t have swung right now.

Did I mention that I hate this, I don’t want it to be over, so much as I wish that I were a carpenter/plumber/electrician myself.  Thanks Amy, Mom, and Joanie for all of your kind words on my ranting.

This house is killing me and I made a middle aged man almost cry

I think that I know what my next tattoo should be:

BALL BUSTER

I believe that the world of contracting is very misogynistic, I think that some folks might see all five foot two inches of me and think that I am a push over, I think that I am very nice, and fun, and understanding until you F up my house and then, watch the F out.

We are having an issue with our Contractor, and when I questioned him about his sub-contractor’s work, and said that until they fix it, I will not pay for it and that I believe that they were being lazy and careless, he didn’t like it.  That makes me sound really harsh, and maybe I was a bit, but here is the back-story:

Our Contractor is from Ireland, in his mid to late fifties, and unfortunately last week, one of his brother’s in Ireland, passed away.  He went home for the funeral and wasn’t on our job for a week.  I understood, urged him to take care of his family, and that we would be fine with out him.  He promised me that work would continue and that he would give me the phone numbers of his Sub’s, so that I could GC for the week.

He didn’t get me those phone numbers, his Sub’s didn’t show up, when expected, missing days at a time and when they did the work was sub-par, to be kind.  They also sent me off to get new supplies, three times and still didn’t finish the job.

Here I will show you

IMG_1524

This is a GOOD cut, it is the radiator pipes underneath the “new” drop ceiling

IMG_1525

The dotted thing is used to hold the pipe up to the ceiling. They cut them, because they were in the way, cutting them put the house at risk of flooding, because radiator pipes are filled with gallons of water, always. I brought this to the GC’s attention as the “lazy or stupid” part of his sub’s work. He put them back in place, with some very messy cuts, but at least back in place

IMG_1529

The area in front of one of the windows. How sleek and streamlined is this. Crap

IMG_1522

The drywall going up the stairs. Why doesn’t it go down to the stairs? Why all of the gaps? Logical questions, and no good answer was given.

IMG_1521

Solutions to this asinine problem? Moldings that will take a ton of time and a ton of cuts, and I believe the impression is that I will pay for that work additionally. Nope. I’m no home improvement expert, but I am a logical and I watch the DIY network, and this is just shotty work.

So when he got back to work this week, we met at the house and starting going over the work, and I wasn’t quiet.  I think, that he wanted me to say how amazing it is, how happy I am.  How could I, I have eyes, and I’m too broke on this project, to pay for crappy work.  So he got all pissed, and wouldn’t look at me, and muttered under his breath, and walked away.  Well you know that I am not putting up with that.

He said that he didn’t need this crap after all that he has been through, and that he was leaving the job.  I tried to talk to him, I (like a girl) followed him around the house, asking him to stop, to talk to me, to listen to what I was saying.  I don’t think that your sub-contractors did a good job, I asked him if he did, I asked him for a schedule for this week, because we are a week off of goal, and since he didn’t get me a flooring guy’s number or the painter’s number, I have had to coordinate some of my own Sub’s, and now I need to coordinate everyone.  I said that I am not un-happy with his work, I am un-happy with their work and he is my GC and I expect him to fix it.  I don’t expect to pay for it until it is fixed, and I don’t expect to pay more for it, because they estimated a tough job, and there were no surprises in the job, so why should I pay for more?  He went outside ranting, kept repeating that he was leaving, leaving and that he didn’t need this crap.  He walked away, went in to the backyard and I heard him yelling at someone about me.  I sat on the front steps and waited it out.  Then I heard him in the house working again.

I went in, and he was assessing the stairs.  I asked him if he was leaving the job, and he said no.  I then told him that he owed me an apology, and I apologized as well.  I feel like my hands are tied, I feel like I will never use him again, but for now, I have to get this job done.  I truly believe that if I were a guy, this wouldn’t have even happened.  He wouldn’t have thrown a hissy fit.  I know that I should respect my elders, but shouldn’t he respect a lady?  Ha, ha, ha

Tomorrow the floors are done being re-finished.  The baby GC is working on the stairs, the new plumber is moving the radiator and I am painting a mud room and sanding some back stairs.

Where have I been?

Renovating

We are working on getting our beloved house ready to sell.  Our target timeline for a basement renovation, bathroom update, and a ton of painting and staging is next weekend.  But that seems to be getting farther and farther away.  Since our tenants moved out a few weeks ago,  Micah and I have been working on the house every chance that we get.

I’m super stoked about the staging, and hopefully it will look good.  The trim painting and hemorrhaging of our bank accounts I could do with out.  I always joke that we’ve put a ton of money in to our house to make it look like it needs a lot of work, but it doesn’t really need a lot of work anymore.

It still has a few hurdles, but hopefully if we price it right, those hurdles won’t be insurmountable.

Here are a way way before, way before, before and now shots of the basement and bathroom.

DSCN0182

When we bought the house it looked like this. Check out those floors, yep they are asbestos

FSCN0286

Before we knew is was asbestos, we carpeted the basement to make it more liveable

DSCN0254

This is what the basement looked like after we had the asbestos tiles professionally removed

basement remodel, drywall

This is what the room looks like today. The floors were painted a few years ago, and they are well covered in drywall dust. The drop ceiling is almost done. Then the electrician will finish up, the walls will be painted, as will the windows, and the radiator will be moved

Amelia downstairs bath

The shower tile didn’t all match, the vanity is from the 70’s and the toilet was nasty

DSCN0866

a new ceiling, new electric, a vented overhead light, new frosted glass window, new shower curtain holder, and a new Kohler toilet

IMG_1167

Today, in the process of installing a new vanity with a marble top, new medicine cabinet and light. Next paint, floor tile grout clean-up, and perhaps stenciling

So that’s it for now.  I’ll try and take some more pictures tomorrow of the room’s upstairs that I am working on.

Post Traumatic Seizure Disorder

Ryan has been sick for a few days.  It seems to just be a virus, tis the season.  We’ve had three days of fevers, sniffles and lethargy.  Today, she woke up hotter than ever and more lethargic so we took her to the ER.  I didn’t want to take her to the ER, but it’s Sunday and when we called the Doctor on call at our Pediatrician’s office, he suggested it.  Why don’t I want to take her to the ER? because they always admit her, or almost always that is and I wig out.  This time we had a favorable result, no admittance, no UTI, pulse ox high 90’s, keep watching her fever, push fluids (praise to feeding tubes), increase her breathing treatments, and as much rest as possible, and I still wigged out.

I’m not complaining about this and I’m not raising a red health flag, I am trying to explain what happens to me and why I think I have PTSD, Post Traumatic Seizure Disorder.  I am not making light of this or trying to be funny.  Every single time that Ryan is sick, needs to go the ER, has a procedure, or a new surgery I go down the rabbit hole.  I get completely irrational, tense, and cry.  I am so panicked and scared that it’s all starting again, that they will tell me she has more birth defects, more brain damage, new seizure types, that she is going to die and no amount of love that I have for her will save her.  That we can do nothing to help her, that there is no Doctor or medicine that will help.  I freak out that if we bring her in, that the other shoe will drop and that I know will be the end of me.

I can’t even share that without starting to sob.  When I feel this way I react horribly, First the mania and panic, then I pick a fight with anyone who I come across, next I run away from the situation and leave Micah holding the bag then I just zone out and become completely passive.  Once the situation is over and I believe that we will be ok, that Ryan will be ok, I will inevitably bounce back with tears and apologies.  I hate that this happens and while I don’t deny that I need some therapy and help dealing with these feelings occur, I don’t hold a lot of hope that they’ll ever end.

I don’t think that most people understand what it is like to feel this panic, unless sadly they too have had a very sick child and they keep getting bad news, after periods of hope and happiness.  It isn’t the fever.  I know that kids get fevers, I truly believe that she does just have a virus, this time and she will 100% recover.  But I still wigged out, so I am going to look in to therapy specifically for PTSD.  Because even if everyone forgives me, and understands or extends allowances, I don’t want to do it anymore.  I don’t want to feel like that anymore, and I don’t think that Yoga and giving up soda is going to cut it.

 

« Older Entries