home, sweet home

Our house is finally complete!  We've moved in, but still haven't unpacked all the boxes.  We closed on our house, got the keys, then Cody and I left for a little vacation to Germany the following day.  It was tough, let me tell you!  ;)

We moved into the new house the day after we got back from vacation.  The timing on everything has been insane, we could not have planned this madness if we had tried!  The house is a work-in-progress but I promise to post pics as soon as it's presentable.  I'm especially excited about Rhys's new bathroom (the main reason we moved to begin with)!  Rhys's surgery is scheduled for next month so please be thinking of him the next few weeks.  I'll try to post again soon with more info.

SDR approved!

Four days, 1800 miles, and a doctor visit later, we have our answer.  Rhys was accepted for his SDR surgery!  We are so very excited, but nervous as well.  This is a big deal!  It's invasive, but our doctor has modified the procedure so that it is as minimal as possible.  If you read the link I provided in the previous post you will know that they remove part of the bone on the spine and snip the problem nerves.  I'm crazy stressing about this, but we know it's the right thing for Rhys.  In fact it's probably his only hope of being an independent walker.  Dr. Park thinks Rhys is spastic triplegic, which means three limbs have issues.  I agree with this.  His right arm has always lagged behind his left in terms of ability and dexterity, but he it's not the typical heavily restricted use you'd normally think of.  Dr. Park thinks this surgery will allow Rhys to sit unassisted in all position (holy cow I can't even imagine life with Rhys able to sit without help), remove the scissoring when taking steps, and also could improve his right arm, speech and please oh please his eating.  About four months after his SDR he will have lengthening procedure called PERCS.  The combination of these will hopefully give Rhys the ability to walk with his gait trainer in a purposeful way, instead of only at therapy.  Our expectations aren't ridiculous, and we don't see this as a miracle cure.  If Rhys were only able to gain unassisted sitting and no spasticity it would be worth it.  For him and us.  It's hard to lug 33 pounds around day after day.  But we will continue our five-a-week therapy routine, and work really hard for something more than that.  My goal is for overall improved quality of life for Rhys, so I will take whatever we can get!  Timing right now is up in the air, but we are shooting for October or November.  It would be far more complicated to take Zoe and Beckett with us, not to mention Cody and I would be tearing our hair out having to go between the hospital and hotel with those two, so we're trying to arrange it where the two littles can stay behind.  Surgery lasts 3-4 hours, and usually requires a five night stay.  That's all we know right now, but we're excited to get this process started.

summer 2013

Last day of school! Zoe often gets up in time to walk Rhys to the bus with me.  In the apartment we have to walk a short distance to get to the front office.  She's intrigued by the bus, and Mr. Guy the Bus driver.  Every morning she walks out with me she has to walk up the steps to the bus and tell the other passengers high.  It totally makes her day and she talks about it all morning.

 

 

We are considering SDR surgery for Rhys.  Click here if you aren't familiar.  This is something we just recently learned about, sadly not from one of Rhys's doctors (that's a story for another post), but another sweet CP mom where I've gotten so much of my good and useful information.  So I saw it, read about it and became obsessed with learning more.  The medical community is kind of divided on it, and we still have major reservations about the procedure, but we know the possibilities could be amazing for Rhys.  We went through the application process, had to get specialized x-rays of Rhys's hips (that us below in the dressing area waiting on the x-ray tech!), and sent in our paperwork.  We have a consultation in a few weeks in St. Louis to see if this procedure is a good fit for Rhys.  Yes, doctors in Houston do it but (a) not a single one of his doctors has mentioned it as a possibility, which irks! and (b) this St. Louis doctor is the best in his procedure.  It's all he does.  So off we go!  Please think of us, we're excited and nervous, but anxious to pick this doctor's brain.

 

 

Sweet Zo is a little fashionista.  She wants to pick out her own clothes, change multiple times a day, and only wants to wear dresses.  I can sometimes get by with a tunic type top, but she really isn't interested in tees and shorts.  Sigh.

 

And she's obsessed with sunglasses!

 

Sweet baby Beckett!  He turned two in July and Rhys turned the big five!

 

 

Zoe just completed her float test at swim class.  The goal is to teach them if they unexpectedly fall into the water to get on their back and float to the edge of the pool so they can pull themselves out.  The test is one test, three weeks in a row.  They have to float in street clothes and shoes for five minutes, or until they reach the edge.  Zoe did awesome her first two tests, but last Friday she had to wear jeans.  She doesn't like jeans.  I should have tried to figure out another option, but I wasn't thinking she'd be so angry about it.  She almost failed her float test because she was so ticked off!  But she didn't!!  So proud of Zoe!

And lastly, here is our casa!  Less than two months to go and boy are we ready!  The apartment is tiny, and while it could be worse, we are ready to get the heck out of here.  The roof is on our house, the inside has drywall and is taped and floated.  The texture should be on by the 7th or 8th.  They will hopefully start bricking this week.  Ours is the next house in line, so hopefully tomorrow!  After that it is all interior work.  Soooo excited!

 



closed and funded!

After a two week delay, and some serious panic on our part, we closed on our old house last Friday.  Just two days prior to that we were seriously thinking we would be scrapping the contract and starting from square one.  Our buyers were a pain in the rump, but we're glad to have it all done with.  Construction on our new house started this week.  Well, nothing has happened technically but we had our pre-construction meeting last Friday as well to go over all our options and requests and they are officially able to start moving dirt now.  Please throw up a little prayer there will be no major hurricane activity this summer so 90-110 days from now we will be residing here...

 

And just for fun, here is Zoe at her second gig as a flower girl.  Such a better experience than try number one at my brother's wedding a couple months ago.

 

 

California

Rhys just told me he wants to go to California.  Okay, buddy!  This just made me think that we haven't updated you on all the great things Rhys is doing these days.  Mostly they pertain to his speech and cognition, but he continues to make progress with his motor development too.  If you would have explained to me one year ago that Rhys would speak in coherent sentences I would have told you that you're crazy!  I wish I could adequately explain how far Rhys's speech has come in the last 12 months.  It's like one day he had only a few word approximations and the next he was bossing me around.  We are so thrilled with the developments he's made.  Even in the last few weeks I've noticed he makes certain letters sounds more clearly than he did before.  He works so hard at therapy and we continue to see the difference.

 

He still lives with his iPad. I honestly don't know what we'd do if not for it. He plays his games, but he mostly watched his shows. And his shows are very unconventional for a 4-yr-old if you ask me, but we roll with it! He loves Mythbusters, How It's Made, Tanked, Wipeout and asks for the TV stations HUB, Science, Discovery, Animal Planet, and PBS by name. And shame on you if you try to trick him because he knows the station logos and will let you know you didn't change it to the right channel. He loves anything that blows up or crashes, and loves to watch things being put together.  I wish I knew where this interest came from because we've never said "hey Rhys, watch this", he found these shows all on his own.

 

Rhys is still in PPCD for half a day, with therapy sessions five times a week.  His teacher tells me he is on track for cognition and is up to speed with his peers in terms of readiness to go to Kinder.  We are so thankful for this, I mean he is a preemie, barely made the cutoff for K with his birth date and he's ready to be challenged by a regular Kindergarten class.  He will be pulled out for about half the day for subjects he needs more assistance with (mainly because of his lack of motor coordination to write, speak, etc.), but his regular classroom will be with average peers.  The new house is zoned to a different elementary school that we aren't familiar with, but his current teacher tells me she loves the resource teacher at the new school so that makes me feel better.  It's going to be a huge adjustment for him, and also a huge adjustment for us in getting a new schedule down.  We will have to change our therapy times, something I've literally been dreading for two whole years because I knew it was coming, so I hope all the transitions to new house, new school, and new therapists go smoothly.

 

movin' on up!

No, I'm not pregnant!  A friend called me to ask after she read my last post, which is the first I realized you could assume that given the wording, and how the surprise of B popped up.  So no new littles on the horizon at this time, but I did think it very funny.  We've been so busy because we're in the process of packing up our house to move (up to the front of the neighborhood)!  It started with a random thought of how nice it would be to have modified living space for Rhys.  That turned into a casual perusal of home builders and potential locations to build.  Fast forward two months later and here we are.  This was a very sudden decision on our part, but once we decided we jumped right in.

In the last two months we've finished last minute projects around the house (that had been sitting on the back burner for months and months, but that's what you get when a new baby arrives unexpectedly in the middle of a kitchen remodel), moved our extra clutter to a storage unit, decided on a new home/location to build, listed our current house for sale, accepted an offer a week later (impressive in our market!!), did required inspections/appraisals/home repairs, and started packing.  Which brings us to today.  We are currently looking for a temporary rental while our new house is being built.  Oh, and did I mention we are closing on this house next Friday?  Yes, you read that right.  We're one week from being homeless and we have no place (yet) to go!  It's in the works, and I know it will work out however it is supposed to.  We knew we would take temporary housing while waiting on our new house, but it still stinks to move seven years worth of living for five people.  Totally worth it in the end though.  We are incredibly excited about our new house.  As Rhys gets older and bigger it gets harder and harder for us to work with our current layout.  He needs a modified bathroom and doorways, and we need a continuous flooring of some sort for his eventual wheelchair use full time.  So we are taking advantage of the super low interest rates to get a "custom" house that will fit our needs.  Yea!

just a little something...

to hold you over until I can tell you all about what's been going on with our family during the last few weeks...

 

 

 

How did I get so lucky?

 

 

the crud croup

I started potty training Zoe back in December, on her first day of Christmas break.  I went cold-turkey panties, but did do a pull-up at night because I didn't have the energy to deal with night time accidents since wouldn't you know the day we started potty training was the day Rhys checked into the hospital for RSV.  The pull-ups didn't last long though, after I realized Zoe was only having accidents when she sat in bed for a while after waking up.  May be hard to believe, but until that time she didn't get out of bed until we came to get her.  She was usually silent and would sit there for who knows how long.  I finally convinced her to come get mommy or daddy when she got up so she could use the potty.  That worked great!  Fast forward to today and she now wakes up at the crack of dawn!

 

Yesterday morning was no exception.  She got up early, sat on the couch while I got Rhys ready for school and then I put her back in bed with me so I could get an extra hour of (much needed) sleep.  I woke up, got out of bed as I normally do, but Zoe didn't wake up.  She's usually right on my heels.  Clue one!

 

I woke her up at 10:30 and she acted fine all day.  About 4 o'clock she was yawning and telling me she was tired.  It isn't out of the norm for her to tell me she's tired, but at 4 o'clock if she's tired that usually means she is a cranky pants, and not wanting to sleep.  Clue two!

 

Last night she asked to go to bed.  No further explanation necessary.  Clue three!

 

About 10 p.m. last night Zoe woke up with a barking cough.  She had a fever of 101+ and was puking from the violent coughing.  She was also sucking air.  She was upset and asked for a bath because she threw up in bed, and while I was bathing her her little chest was caving from struggling to breathe.  Cody rushed her to the emergency pedi clinic where she skipped the half dozen kids in the waiting room.  After a steroid/epinephrine she was much improved.  Talk about scary!  B had croup when he was 4-5 months old, and even though he had a hard time at night it never got that bad.  She thankfully slept well through the night, only coughing once or twice, so I am grateful the meds at the clinic worked.  Now I'm hoping the other two don't get it. :/

Zoe's birthday party

Zoe had a great third birthday party!  We celebrated again with cousin Ian (who, if you remember, shares the same birth date) at The Little Gym this year.  It was a huge hit with all 20+ kids!

 

 

We tried to get them to blow the candles out together, but Zoe was too interested in scarfing her cupcake.

 

But she thought she'd be helpful and blow Ian's candle out for him.

 

Before blowing out her own for a second time.

birthday girl!

 

Three years ago this sweet baby girl came screaming into the world.  I can't believe three years have already passed.  My baby is no longer a baby.

 

 

She's spunky, independent, stubborn and helpful.  She loves cupcakes, bubbles, swimming, her brothers, sunglasses and the color pink.  Although maybe not necessarily in that order.  She has a vocabulary that would rival many teenagers and chatters all day long.  She knows her letters, colors, shapes and numbers, and most animals names and sounds.  She occasionally calls Cody and me by our first names and thinks it's hilarious.  She loves all things girly, but is a bruiser and can rough-house with the best of them.  And I can't believe she's three!

 

 

 

Happy birthday baby girl!!

 

weekend wedding

My baby brother got married this weekend.  I still can't believe it!  Zoe was flower girl, Rhys introduced the bride.  Zoe was, well she was just Zoe.  Things got started a little late and all she wanted to do was play.  This is what I had to deal with leading up to the wedding.  She was throwing fits, throwing her flower petals, and just overall being a grump.  Not fun!!

She was happy to be outside though, for a minute.  Then she wanted to run and play.  I managed to keep her clean but she wasn't happy about it.

I am excited to have gained a new niece!  The kids love her and she is super sweet!

Rhys's sign reads "Uncle Chad here comes your girl!"

I handed Zoe off to Cody once they were lined up.  He's keeping her from bolting.  She did manage to make it down the aisle, but jetted straight back up before the bride came down.  Funny, maybe?  Probably it if isn't your kid doing it! :)

Just for laughs, this is a great representation of our entire night.  Rhys was an angel, Zoe was a goof and Beckett didn't want to stand still long enough to do much of anything.  You turn your back and he's gone!

The best we could get, but I love it!

this is B...

This is B...

Just about every day.  The boy has no fear.  And you see Zoe down there on the bottom of the pic?  He encourages her to behave badly.  Not that she couldn't manage it on her own, but he shows her things she never thought of herself.  Sigh.  Now that Zoe can open/close doors and help herself to food we constantly have a mess around this place.  Which, I should add, is exactly what happened here.  I walked out of the room, heard the refrigerator door open and came back to see this.  Zoe had "helped" B and herself to a snack.  The two of them are attached at the hip.  Which I love!  But boy is it double trouble!

long overdue

My goal for 2013 was to get back to blogging, but as you can see it's taken me almost two months to make that happen.  Here is a recap of the last few months, in cell phone pics so please excuse the photo quality.

Rhys's school pic this year.  And Zoe's and Beckett's.  Zoe wasn't amused, and B didn't know what the heck to think of taking pictures.

 

The kiddos at Zoo Boo.  Rhys had his second annual NICU reunion.

My breakfast crew on the weekend Cody was in Africa.  Don't let this fool you.  I didn't take all three out in public by myself... we hit the drive-through! 

The kids playing in the lobby of the doctor's office.  The two littles absolutely did not want to leave.  Before it was all over Cody ended up in the lobby with them, while I finished up in the exam room with Rhys.  That was a loooong appointment.

No words necessary.

B's first haircut.  He was an angel.  Oh wait, this was his second haircut... we didn't get pics of the first.

Umm... 

What can I say?  My kids don't like fictional characters...

 Cutest little reindeer you ever did see.

Our poor boy landed himself in the hospital the week before Christmas.  Every winter he's had horrible issues with drainage.  The drainage is really bad, and to make matters worse it goes down his throat instead of draining out his nose.  So combine that drainage with an instant gag reflex and you can imagine how fun that is for us.  We've struggled with this every allergy season since he was born.

This year I had Cody take him to the doctor to see if he could get some Rx strength meds to help him out.  Wouldn't you know he tested positive for RSV on top of everything else.  I guess we're lucky we managed to miss it for four years.  He was satting low 90s at the doctor and was sounding junky, and because of his history he was ordered straight to the ER.  Six days later he was discharged (on Christmas Eve).  It was a really rough week for us.  The doctor's complicated everything by not listening to us.  They walked into his room every 15 minutes it seemed and made no efforts to coordinate their care.  In my frustration I actually yelled at a few nurses and had strong words with the floor docs (one of who walked out of the room on me during a conversation, isn't that awesome).  We've done O2 before.  We know how it works.  And as crazy as it sounds Rhys seems to sat the same whether he's on 3 liters or 1 liter.  At one point they had Rhys on a high-flow cannula at SEVEN liters.  Are you kidding me, that's like hurricane force winds.  And they actually asked me why he was breathing out of his mouth.  GRRR.  Anyway, when we explained the situation to his regular pedi she took him off the high-flow cannula and he swapped him to a regular cannula on less than 2 liters.  That's the summary, and I yes I know there was more involved, but I was so incredibly frustrated at the nurses' willingness to come in and crank up the O2 willy-nilly. Thank goodness we have such a great relationship with his pedi office doctors.  So Rhys came home on oxygen and despite my worries he actually only needed it for a few days.  It took him longer, however, to regain his strength... he wasn't 100% for weeks afterwards.  Overall he did unbelievably well considering his history and it could have been far worse.

  

We just celebrated my cousin's birthday at Minute Maid Park.  How exciting!  The kids loved it!

Z on her way to school.  I've been trying to snap random pics more often.  I was so good about it until recently.  On the right is Zoe at the zoo a few weeks ago.  Zoe and Rhys loved it!

Do you see how B is standing?  Who would think this boy is the same one that took the school pic

up there ^^^?  He is a model model now.

Thanks for checking back with us!  I am going to try harder to post at regular intervals.  I miss blogging and sharing the kiddos with you!