Back to Northern VA

Murphy went back to school yesterday.  And I made a lot of phone calls, trying to get somethings scheduled and figured out.  I'm on a mission - but more on that later (in an upcoming post).  

And yesterday marked four weeks in this cast.  In some ways it's gone by fast.  But I'm officially over it. And so is Harlie.  Despite the itching, she's still in good spirits.  

Harlie working out with a 5-pound weight!

Homeschooling session with Mrs. Katie.

Today we have our first follow-up appointment with her surgeon.  The cast looks terrible.  The stuffing has completely come out along her back.  The cast edges are quite sharp without the border.  Tom put some duct tape on it the other night and that seemed to help and look like it was more comfortable.

Until the next morning when it came undone and then somehow got turned around and stuck to her back.  Keep in mind that this girl's number one enemy is sticky stuff.  She HATES anything sticky.  And she had a big strip of duct tape stuck to her back that HAD to come off.  It was not pretty.

So, part of me is really hopeful that her surgeon will either change it (give her a new cast) or say heck with it, she's healed GREAT and put her in a brace.  I know they are long shots.  But, without hope you've got nothing.  So, I'm putting her car seat in the back of the car - just in case.

Well, I have to go.  Lots to do to get ready to leave.  Our appointment is at 10:30am.

Hopefully I'll be able to give you an update while we are there.

Thanks!
~Christy

Quick Update

Spring Break is not a break when you stay home with three kids.  Just in case you were wondering.  There has been no time/energy for me to blog.  At all.

I only have a few minutes, so I'll just give you a quick update for now.  Harlie is still doing well.  We are now three weeks into this cast.  We have about three to five weeks left.  We have our follow up appointment with Ortho next Tuesday.  Her cast is looking pretty yucky.  In the back the covering has come off and the padding stuff is sticking out.  She's really been struggling with going potty.  She's just not comfortable going in her diaper, and she's not at a good angle for a kid who's potty trained.  Yet she doesn't complain.

Traci (her PT) brought a two-pound weight bar when she brought the stander and walker.  Here she is "working out".

Here she is playing with that aqua sand in the stander.  She asks to play with it, which is great because it gets her standing.  She stands about two times per day, between 40 ad 60 minutes each time.

Her most recent homeschooling session with Mrs. Katie.

On Saturday, Murphy and I went for a two-mile run.  He got new shoes last week (running shoe type) and he said he'd like to run with me.  YAY!  So, there is a 5k in May that is family friendly, so I thought we could train for that.  I couldn't believe how well he did running those two miles!  He ran a steady pace and only walked a little.  And the best part is that we talked the whole time.  It was great in every way!

We ran again on Tuesday (yesterday) afternoon, but it was really hot and I guess he wasn't feeling as energetic.  We ran just shy of two miles and he had to walk more than on Saturday.  But, it was still good.  

On Sunday I ran six miles - my longest run since the marathon in November.  Oh, that is so sad.  But, I am so happy to be running again.  It is very clear that I need that in my life.  So that feels good.  Even if it isn't my best running, I know that I will get back to where I was.  

On Monday night, I was tucking Cooper in bed.  I told him I loved him and he said (clear as a bell), "I love you."  Melt me!  He is talking like crazy now.   

Yesterday (Tuesday) I put Cooper down for a nap.  He decided he'd rather spend that time "playing" quietly in his room.  He unzipped Murphy's beaded pillow and poured all the beads (tiny balls of styrofoam?) out all over the place.  Murphy was sad (because he liked the pillow) and did his best to clean it up to save the pillow.  I, of course, was telling him we just need to throw it away because we will never be able to trust Cooper with it again.  But I didn't throw it away.  Murphy worked for a long time to clean it up.  Tom said he'll fix the pillow so you can't unzip it.  What's the point in providing a zipper for a pillow full of stupid little beads that are impossible to clean up, anyway???  Ugh.

Murphy cleaning up Cooper's mess.

Look at his fingers - there were so many beads.

Later that afternoon...

Cooper was finally wiped out and fell asleep on the couch.  

Today we were supposed to take the kids to the zoo.  But, I'm just nervous about taking Harlie out for the first time and driving that far away.  Well, I'm probably nervous about a lot of things that go with taking her out in public right now.  The whole potty situation doesn't help.  We can't take a bedpan out in public with us!  Plus, there are just too many logistics involved with that.  And I'm completely void of the energy for those kind of logistics.  Between trying to run and having the kids home for Spring Break, I'm beat to the core!  So, we are going to start with a park closer to us.  That way if she's too uncomfortable, coming home early won't be that big of a deal.  

So, I have to go and get ready for that.  Thanks for reading.  And thank you to everyone who has provided a meal to our family!  We have been so well fed these past two weeks!  

Thank you!

~Christy

Update 4:30pm

Well, it looks like we might be making some progress!!! I am SO happy!!!  We are going to stay tonight for sure. But if things continue to move, tomorrow might be a different story!

We finally saw her surgeon today.  She looked at how close the cast was to her girly parts.  I can't remember if I told you about that yet or not.  But, since she's casted with her hip straight (leg is not at an angle outwards) there is very little room in that area.  In fact, it was covering up half of her stuff (literally)!  Her surgeon said it looks like she shifted a bit in the cast - because it was not like that in the OR.  So, she had them cut the cast away from that area a bit.  Just an inch or two made a huge difference.  I know she has to feel more comfortable now.  I still don't see how in the world we're going to keep it clean, but you know we'll try our best.  We bought some Saran Wrap last night, so we've got some of that wrapped around the top.  We'll see how that goes.

She is signing "potty" some, so we've been putting a bedpan under her.  So far that's worked okay.  I'm not sure how that's going to work long-term, but maybe by then I can explain to her that it's okay if she goes in a diaper.

Anyway, that's about it for now.  My hopes are high.  I think any movement at this point is AWESOME and a great sign that things might progress pretty quickly from here on out.  Hopefully my next post will be even better!!!

Woohoo!

Thanks,
Christy

Recovery Update #1

Okay, just want to let you know that I am no longer pissed.  Sorry for that outburst in my last post.  As it turns out the two teeth she lost are on the bottom.  Whew!  I know it sounds completely ridiculous that I would stress so much and get so upset over baby teeth.  But here's why...

1.  It's always the little things that push me over the edge (momentarily anyway).  I always recover.  So far, anyway.  Perhaps it provides a distraction from the much larger, much more important issues that are hanging above like big scary, black clouds.  Any shrinks read my blog?  I could probably use some analyzing.

2.  Quite frankly, she's already got more than her fair share of facial and dental issues.  The last thing she needs is more issues with her mouth and teeth to distract from her beautifulness.

3.  Do we have to fear losing teeth for all future procedures?  Geez.  And what will we do when they are her permanent teeth?  I'm going to have to find an orthodontist to make her a mouth guard for crying out loud.

4.  And the way she lost these particular two teeth (just in case you didn't know - she lost a front tooth last February after her jaw was wired shut for 9 weeks) just make me cringe.  Seriously.  Shudder!

So, she appears to be somewhat comfortable.  Although I highly doubt that she would agree.  She's already tried to twist all around, which has GOT to hurt.  She's a bit swollen - around her face especially.  But that's probably normal given the trauma, fluids and blood lost and received.

The body cast is SUPER cute - as far as casts go.  And her baby doll has an exact match of a cast.  The pair could NOT be cuter!!!  (If I do say so myself.)

Oh, and before I forget, the surgeon told us that after the cast comes off that she will put her in a brace for a few months.  Fabulous.  During the summer.  That should be fun.

Okay, just wanted to let you know that I've calmed down and have returned to my normal, fun-loving, funny self (if I do say so myself).  So no worries.  All is good in the CICU (cardiac intensive care unit) so far.  Well, again, I doubt Harlie would agree.  She's looking pretty miserable right about now.  Break. My. Heart.

Thanks,
Christy

Surgery Update - 3pm

A nurse just came out to tell us that the surgeon did BOTH fusions.  She said that she (the surgeon) would be out soon to talk to us about how things went.  Tom asked her if Harlie did okay for them and she said, "She's stable."  Hmmmm... not sure how to take that.  English is not her first language, so I'm hoping it's just a cultural thing and not a the doctor has to tell you that something very serious happened in the OR kind of thing.

The nurse said that they still had to cast her - so it would still be "a while" before we see her surgeon.  While I'm anxious to see her - I don't want to see her!  I'm dreading what she's going to look like in this cast.  And that sounds so stupid after having to see her after two jaw reconstructions.  Those were the WORST.

And that reminds me - I haven't really talked about Murphy and how he's doing with this surgery.  We talked to him a week or so ago about it.  He asked if she would come home looking like Frankenstein.  Oh, my poor kids.  All of them.  I really hope they develop good coping mechanisms and don't try/like drugs.  I've seen my fair share of A&E's Intervention.  They all had something traumatic happen to them when they were kids.  Well, most of them anyway.

Murphy did his best to ignore me as much as humanly possible for the entire day.  I had to resort to sending him next door.  Thanks, Cami!  Then Cooper was a whiny mess.  He could clearly see that something was amiss as our mass of baggage grew in the hallway.  Murphy was eating dinner and Cooper ran up to him and threw his arms around him and said, "hug."  Oh, a moment to treasure!!!!

Okay, back to right now.  They have the TVs on in the waiting room and we are watching some horrid soap opera.  There is a very inappropriate scene of romantic nature on right now.  EW!  Isn't this a children's hospital????  Tom can't stand it and keeps making funny comments.  He just said, "and now he's going to fumble with her bra."  Yes, it's that kind of scene.  Hey fellow stranger parent sitting next to me in the waiting room, good TV viewing, huh?  Oh, I'm sorry, that's you snoring.  Sorry, didn't mean to wake you.

Oh, the joys of having a complex child and spending a mass amount of time in uncomfortable situations. Good times!

Anyway - got off track a bit there - the waiting isn't really the worst part.  It's all the days in the hospital afterwards that are hard.

Okay, I'll update again when I know more.
~Christy

Casting Event

So, at my parent/teacher conference with Harlie's preschool teacher and hearing impaired teacher, I asked them for advice regarding Harlie's upcoming spinal fusion recovery.  This time we are going to talk to her before surgery and do our best to explain what's coming.  And one thing that concerned me was how I was going to explain that the cast is only temporary - and it WILL come off in time.  I visualize her "coming to" from surgery and realizing that she can't move and looking down and seeing a scary cast.

So, a few days after the conference, her HI teacher came up with a fabulous idea:  cast her favorite baby doll in class, get a calendar, mark a date for the cast removal and every day in between, make a big deal of marking off the days.  She gets to see the cast, touch the cast, and completely "get" that the cast is only temporary.  Genius!!!

Mrs. S found a nurse to come to class with the casting supplies to cast the baby (named, Sarah).  Mental note: get the name of the nurse and send her a thank you note!

Last week was the big event.  It was a class activity and it was all for Harlie!  So, so sweet.  How great it is to be surrounded by people like that.  I just can't thank them enough!

Here are some clips of the event:

Apparently Harlie loves Sarah, and has been playing with her all the time - taking her potty, feeding her and just loving her.  Which is so weird because she doesn't do that at home with her babies.  I mean some, but not like what they describe she does at school.   I guess it's Sarah that she loves - not all babies.

The cast comes off next week.  I really think that her seeing Sarah in a cast is going to pay off.

And then, get this... the other day I came across a show on Video on Demand - Bubble Guppies.  I pressed play and the episode (called "Call a Clambulance") was about a fish that breaks his tail and has to go to the hospital for a cast!  How awesome is that?!??!  And since he was a fish, his cast looks like a body cast.  Perfect!  She's asked to watch it several times since then.

So, hopefully she won't be too scared when she wakes up and realizes she's in a cast.  Ugh.  The day is quickly approaching - just a week and a half now - March 28th.  At this point, I just want it to get here.  The sooner it goes on, the sooner it comes off.  Sometimes it kills me how much time I wish away.  That's just not right.

Well, that's it for tonight.  More later!

Thanks,
~Christy

Back to reality...

I haven't had a chance to really research this yet.  However, I thought I'd just show you an e-mail I just received regarding Harlie's body cast (in two months):

So, I spoke with Nancy in the ortho clinic regarding the cast/car seat issue. She looked up the type of cast that Harlie will be in and it looks like it will be a pantaloon cast which goes around the waist and down the leg. The legs may be held apart with a bar. She will be unable to bend at the waist or sit upright. Nancy said that there are no car seats for children in this type of cast and that they do have a loaner program for “ez on vests” which some children use while laying down in the backseat. 
However…she said that because of the trach issue, Harlie may require ambulance transport. Apparently, they end up using ambulance transport for many of their kids who require full body type casting. Does your insurance have ambulance coverage just in case?


WHAT?!?!?  Ambulance transport???

I'm going to need a few minutes.

Okay, I'm going to need more than a few minutes.

Just off the top of my head, the ambulance transport hugely impacts everything.  EVERYTHING!

School, doctor's appointments, therapy (I'm thinking speech is all she'll be able to do and even now that's a maybe), walks around the neighborhood or mall or just to get out of the house.  I suppose the cast does that on its own.  If she's strapped in while laying down on the bench seat in the 3rd row - just getting her in and out of the car is going to be an issue.  I certainly won't be able to do that by myself!

For six to eight weeks!!!

Now I know this isn't the worst thing in the world - trust me.  But, oh boy is it really gonna suck.

Okay, I'm going to calm down now.  I will deal with each thing in its own time.  Thinking about it and worrying about it two months prior doesn't really do much for me.  It sounds like I won't be able to do that much planning anyway.  I'm going to have to wait and see how she looks and how she'll be transported and what she can do, etc. before we can figure things out.  Although I might want to look into homeschooling (not me - by someone else) for that time period.  It doesn't sound like she'll be able to take the bus to school.  Or be able to participate while laying down the whole time.

Oh, my sweet little girl.  There are just not enough hugs and kisses in the world....

~Christy

PS - And some of you think I can't handle a puppy.  A puppy is a cake walk compared to this.  (I say with a smile).  And just to open myself up to more criticism/support - after much research, I've decided the perfect pet for our home is a

Pug. 

I think our family could use some smiles when this whole thing is behind us.

Thanks!