Ortho Follow-up

Today's appointment went well, I think.  Just a brief overview...

This is the traffic we went through to get to the hospital in DC this morning.  Click on the photo to see it better.  Not that you don't know what heavy traffic looks like.  But, seriously?  How do these people do it every day???

Hello Northern Virginia!

Luckily, I managed to leave the house EARLY for this appointment.  Mark it on your calendars folks!  It CAN happen!  And I am proud to say that I even managed to work a shower in my schedule this morning.  (insert smug face here) I dedicate this to all my stay-at-home mom friends who know what an accomplishment it is to shower on a daily basis.  You know who you are!  So, that just proves if you pack all your crap the night before and your husband comes home early from the gym to help, miracles can happen.

Once we got off the interstate and onto First Street, she called "Mama" and I turned around to look at her and she signed "home."  I told her that we couldn't go home because we had to go see the doctor first and she started to cry.  Oh, break my heart.  This is the earliest she's gotten upset.  Usually it's when we pull into the parking lot.  So, she's clearly more aware of where we are, and where we are going and recognizes the way to Children's National.  So I told her it wouldn't hurt.  And that we were just going to do x-rays and talk to the doctor and that's it.  She stopped crying and that was that.  Whew.  The best part is that my word was true.  It didn't hurt and they only took x-rays and talked.  So, maybe she'll believe me when I say it will only hurt for a minute.  Or hold still and it will hurt less.  Wouldn't that be a nice change?

Okay medically speaking...

She's cleared for gymnastics again!  YAY!  But she said she doesn't want her high off the ground.  She wants to limit the risk of falling.  She has some stiff areas in her back (plus screws), and she could seriously injure herself.  So, no worries!  Do you think I could wrap her in bubble wrap and pull it off as a fashion statement? Because I gotta tell you - kindergarten can be rough!

From here on out we will have yearly check-ups.  So, that's good.  But, when she gets closer to age 10, we will increase the appointments because there is usually a growth spurt at that time and she wants to watch her more closely then.  Of course, if we see a problem or her x-rays show issues, then that plan will change.

She said that normally one's spine has some curve in the thoracic area (top) and is straighter in the lumbar area (middle).  Harlie's is opposite.  That's what throws her forward and makes her walk a little hunched over.  I think she said she has a 48 degree curve forward.  Remember that she has kyphosis scoliosis, which is when the spine curves forwards as opposed to scoliosis, which curves right or left.  Here are her x-rays from today... they are copies of the films, and then I took a picture of the copy with my cell, so they aren't the best quality.

Side view.
That object on the left is her pacemaker generator.
And those screws look so long!

You can see her trach tube at the very top.
There are coils in her lungs (in the black space).  The squiggly lines
are the wires that hold the sternum together after OHS.
And you can see the pacemaker leads and generator
and screws and hardware.
It's a busy little body!

I asked her if we are done with spinal surgeries.  She said she would be very happy if we are.  But, she doesn't know.  Only time will tell.  She hopes that her curve forward will not get much worse.  She said if it gets to the point where surgery is necessary, it won't be pretty.  She would have to insert rods and because she has so little fat on her body, the rods would protrude and be visible.  Ew.  She also noted that she thinks that's what happened to her back after surgery.  She thinks that since there's so little fat protection that it rubbed on the cast and caused the breakdown and subsequent infection.

She's also cleared to carry her own backpack.

So, that information was given to me in about 8 minutes' time.  Maybe 10, tops.  I don't mess around and neither do surgeons.  So, here's how it breaks down...

We left the house at 7:20am
Her appointment was at 9:45am
We checked in at 9:46am (security check-in to get into the hospital was a long process)
We were back in the car, driving away at 12:40pm.
I had to go to a drive through for lunch (ugh!) I specifically took an exit that would lead me to a Chick-fil-a.  But it was closed for renovations!  Major ugh!  So, I had to go to Wendy's.  Which meant I had to get a small vanilla Frosty.  Damn you Chick-fil-a!!!
We got home at a little after 3pm.

So, in a little less than 8 hours, I got in the neighborhood of 8-10 minutes in front of the doctor.  That's efficient.

I love my life.

Oh, and I think I mentioned that I'm going to start submitting my mileage for reimbursement through Logisticare.  Well, I went to write down the mileage (which was 220, thank you very much) and other info on my form (which is barely legible, by the way, since it's clearly a copy from a copy from a copy, etc.) they mailed to me to use as MY original and I see that they require a physician's signature.

Damn it!

Tom said he'll fax it to them tomorrow for me.  Of course, by the time it gets faxed to them, and then faxed back to us - who the hell will be able to read it?!

Must not give up.  At 40 cents per mile, it will add up.  I can't believe I am just now doing this.  After all the freaking miles I have driven!!!!

Must focus on the positive.  I can now sign Harlie up for gymnastics!  And she is feeling SO much better that I cancelled her appointment to see the allergist tomorrow.  YAY!!!  Now we know we can keep this little guy...

He got a bath tonight and he smells so good!  Apparently he had some unlucky timing yesterday morning on the walk to school.  He walked under a much larger dog, who shall remain nameless, Custer, ;-) right as he was about to pee so Rooney got a little "wet."  Ew.  Tom hosed him off, but I wanted him to have a proper bath after that.

Okay, it was a long day and I need to get to bed.

Thanks!
~Christy

Gymnastics

Some good news!  Harlie has been getting better every day and for the first time in MONTHS I only had to wipe her nose ONCE today!  Just ONCE!!  Halle-freaking-lujah!!!

I cannot express to you how freaking elated I am that she is on the mend.  Seriously.  The stress I have been carrying thinking about "what if she doesn't get well in time" or "what if she's allergic to Rooney"  has been KILLING me.  Maybe I haven't expressed it truthfully.  Maybe I've been masking it a bit trying to be strong and brave.  But, deep down inside I've been so worried!!!  SO WORRIED!!!!!

Whew!

I've been so stressed that I've been taking it out on my own poor Mother!  As if it is her fault, right?  Well, I saw the light today.  Thanks Lindsay and Todd!

Harlie was invited to a birthday party for Lindsay and Todd's daughter, Peyton, at River City Youth Fitness, which is where Harlie had gymnastics for six months (before her spinal fusion in March 2011).  I really struggled with the decision on whether to let her go or not.

She has her appointment with her orthopedic surgeon on Wednesday.  She hasn't given her the clearance for gymnastics yet.  We could possibly get that then.  But, she could also take x-rays and decide that she's not ready for gymnastics.  So, do I let her go?  Or not?

I knew that she would LOVE it.  But what if I had to tell her she wasn't allowed to do something even though everyone else in class was doing it?  And what if I forced her to remember something that she loved - and then reminded her that she wasn't allowed to do it?  Hello, torture!

I struggled.

But, then I had to err on the side of her loving it.  She gets to do so little that she truly loves and enjoys.  It's so unfair.  So, I decided I had to let her go.  And deal with the consequences later.

And I am SO glad that I did!!!

She loved it!  Wow! It was SO obvious!  And she didn't miss a beat.  It's been more than year since she's been there and she remembered everything.

There was a spring to her step.  There was a smile that I haven't seen in months.  And my heart just couldn't take it!!  I must sign her up for gymnastics.  Granted, it would be in the 3-4 year class, but who cares!?!  She's out there and loving it!  Isn't that just refreshing?  She doesn't care that she's not the same age.  She's just happy to be there!

The coaches were awesome.  They were so glad to see her again.  And they told me that they have been thinking about her and wondering how she's been.

We left and my spirits were lifted.  Truly.  I don't know that I realized how down I've been about her health.  I've been in a really crappy mood for a long time.  Seriously.  I've noticed before that my mood mirrors Harlie's and it felt so nice to be happy again!!!  Wow.  It has been too long!

On my way home I called my Mom.  I've been especially shitty to her.  It's really been awful.  And I'm not proud of that.  But, it's true.  I wanted to tell her how awesome of an experience it was.  I saw other parents' facial expressions.  People I didn't know.  And I could see their expressions.  They could see Harlie's happiness, too and they were moved by it!  Well, I can't confirm that.  But that's what it looked like.  And usually I avoid eye contact with other parents I don't know.  I don't want to see the look on their faces.  The look that says they feel sorry for me and they are so thankful their kids are healthy and not like that.

Anyway, I wanted to tell my Mom that I was sorry for being so crappy to her the past several weeks/months.  I didn't mean it.  It's just so hard to live like everything is okay when it's not.  It's really not okay when your kid is sick and you're anticipating a major, crazy, stressful surgery and having to travel for it, no less.  And you know she's going to miss the first day of school.  And as a Mom, I'm going to miss the first day of school for Murphy.  It's just so NOT right!!!

My Mom didn't answer.  But I knew she'd call me back.

Tom and I went to an adult party at the pool where we belong.  And my Mom called me.  I got to tell her how sorry I was.  Luckily, being the great Mom she is, she forgave me.  Yes, she noticed that I was not nice.  But she let it go.  Thanks, Mom!

And I am happy.  To think of how happy Harlie was today makes my heart swell.  Wow.  She's been through way too much.  And she's still so happy.  I wish I could have video'd her today so you could see what I'm talking about.

Okay, that's it for tonight.  More later!
~Christy xo

Appointment with the surgeon...

...eh, not what I hoped for.

She wanted Harlie to wear the brace for another month.  But we compromised with two weeks.  That way she will have it off for school.  I told her that she doesn't complain - it's me that hates it.  And I recognize that the long-term goals of healing are more important than the pain of dealing with the brace, so if she really wanted us to keep it on, I would.  But, she said that two weeks will be fine.  That way when she goes potty at school, she'll be able to do it on her own.  It is hard to get her shorts up and down with the brace because it goes past her hips.

So, I'm thinking her surgeon would not have approved of this activity...

Notice Cooper posing.  What a ham!

Weeee!

And of course, some video...

How could I deny her this fun?  There is only so much activity I can make her miss.

Anyway, when she gets home after school, we need to put the brace back on her for the rest of the day.  And over time we can wean her off the brace by waiting longer and longer to put it back on her.  She said that it can actually be more of a discomfort to stop wearing the brace cold turkey because all those muscles haven't had to work much over the last five plus months.

I asked if she could resume normal activity once the brace comes off.  I had my hopes up for a gymnastics birthday party for her since she loved it so much and hasn't been able to go since the surgery.    But she said no.  No gymnastics until she sees her next and she will decide then.

So, the next time we see her?  MARCH 2012!!!!  I am SO bummed!!!  She loved gymnastics!

On a positive note, the surgeon said that her x-rays looked "beautiful."  On the side view one, she is much straighter than she was.  She said that she could start to curve forward over time - but she hopes that doesn't happen.  Of course.

Harlie is so cute getting x-rays.  She stands there and does everything the x-ray tech asks her to do.  And he was hilarious because he said, "okay, move your little foot back some.  Exactly." and then "bring your little feet together.  Exactly".  He was cracking me up.

Oh, and she can only carry a light backpack.  Which, I already knew, really.  But it just goes to show you how long this recovery is taking and how many things are affected.  Spinal fusion surgery is no joke.  I think I would have to say it has been the worst surgery so far.  And I sure hope we don't have to do it again.

On the way home there was an earthquake that measured 5.9.  The epicenter was in Mineral, VA, 25 miles from our home.  According to FB, it was felt from North Carolina to Canada.  We were in the car not that far from home, and we felt nothing.  I guess when you're moving 70 miles an hour in a car, you don't notice the ground shaking.  So, I apparently missed the biggest news story of the day.  Oh well.

Oh, and would you believe our luck?  We decided just a few days ago to try and take the kids to the beach - together - all of us - as a family.  Harlie has never been.  Tom took Monday off.  And after I run the Patrick Henry Half Marathon this Saturday, we were going to go to Virginia Beach to stay with some friends who we haven't seen in a long time.  We were going to go to the beach on Sunday and take a baby pool and umbrella for Harlie (since she cannot go into the water - other than just her feet, of course) and we were going to have so much fun!

And now Hurricane Irene is totally screwing up our plans.  The only FUN plans we had for the entire summer.  I am so, so disappointed!!!!  And I don't think we can squeeze it in after the storm passes.  A whole summer and the kids have done nothing exciting.  The boys and Tom went camping and boating a few weekends ago - but Harlie had to stay home with me.  I am so mad at myself for not making more of an effort earlier in the summer.  But it was SO busy!!!  Well, I am not giving up hope yet - but according to reports, it is not likely to happen.

Oh!  And my nephew, Charlie, is playing in the Babe Ruth Little League 13-year old World Series Tournament in NY.  Well, tonight his team won and Charlie got MVP!!!  He hit the winning run.  So now they play again tomorrow night.  What a great experience for him!  Congratulations, Charlie!!!

Okay, that's it for today.  More later!
Thanks,
~Christy

Gymnastics Meeting

The meeting with the owner went well, I think.  I think it was very beneficial to communicate today - because it was clear that there were things that weren't understood - on both parts.

They did not understand exactly why we have to suction.  So I explained that.  He was also confused as to when we need to suction.  Meaning that he has observed that each one of us (her two nurses and myself) wait a different length of time before suctioning.  So, I explained that each one of us has a different level of comfortableness with how long to let her try to clear it on her own.

I don't think we agree on how much the other kids are distracted by the suctioning.  Remember that she's in the three-year old class, and I believe that at that age they are very self-absorbed and not really focused on other kids.  I don't think any of them even notice that Harlie is different at all.  But, you can't agree on everything I suppose.  And from my perspective, I've seen kids get used to the sound.  But from his perspective he's seen kids get distracted easily.  Oh well.

The most important thing is that we agreed that we would suction to the side of the mat whenever possible.  But, if we couldn't and we had to go to her wherever she was - that they need to trust us that it was a necessary thing and move on.  

He explained why they don't let her do a forward roll.  He said that he is simply not comfortable with her doing one right now.  If done incorrectly, a child can be seriously hurt (break their neck) and he didn't want to take any chances.  He said he will teach her when she builds her upper body strength more.  This is a perfect example of the importance of communication!  Harlie's nurses thought that she was being excluded unnecessarily and her coaches were making a decision based on their training in gymnastics.  I can see both sides and am appreciative of both looking out for Harlie in their own way.

Our being late to appointments, etc. is certainly an issue.  The problem is that so much is packed in a day that one thing going wrong completely screws up the schedule.

Another problem is me.  We go and go all the time, that on the rare occasion that I get to sit down for a minute - I take 6 instead of the 4 my schedule allows.  Sorry.  I'm only human.  Now, granted, neither is particularly the case when it comes to gymnastics.  In this case, the mornings are crazy (aren't they for everyone?) and Harlie might be completely cooperative in waking up and eating one day - and totally opposite the next.  Eating alone could take 15 minutes, or 50.  And trust me when I say we are always doing our BEST when it comes to that!  Feeding her is hardly enjoyable enough that anyone in their right mind would dilly-dally.

Luckily, this is one area that he said he has let go for us specifically.  He said that normally when kids are late - it is disruptive to the other kids.  But, when Harlie goes in, she goes straight to her spot and starts doing whatever they are doing with no fuss and no desire for her to be noticed.  He said if it were any other kid, he would have talked to me about it a long time ago.  So, it's nice to know that he can and has been flexible.  And because of that, I will certainly make more of an effort to get her there on time.  I should clarify that we are usually walking in the door at 9:15 - class start time.  So, it takes a minute to get back there and take off her coat and shoes.  So, it's not like we're 10 minutes late or anything.

I am going to make as much effort as possible to be as least disruptive as we can, so that when we can't help it - it's not a big deal.  And I think he appreciates that effort and will respond in kind.

The best part of the meeting was that I got my reassurance that we are welcome there.  He said they love Harlie and they want her to stay and be a part of the class.  He said the effort she puts into it exceeds the effort of some able-bodied kids (like her brother) and he will always match those efforts.  A few weeks ago I told him about Harlie's upcoming spinal fusion and that she would be pretty weak coming out of the cast.  I asked him if I could pay more to put an instructor on her for a little while until she builds up her strength again.  He said that he would do whatever he could to help her.  He brought that conversation up this morning and reiterated that and said that he meant it.

I also gave him a copy of her medical summary so he could get a better understanding of what she's been through.

Oh!  And he also said that she has made such great progress since September.  Especially in her balance.   And balance is particularly difficult for her because of her leg length discrepancy (due to her spinal issues, her hips are crooked, making one leg appear longer than then the other).  So, that goes to show you how hard she is working during those 45 minutes every week!

The last thing I want to share is that he seemed to be pretty prepared for our meeting.  And he mentioned that he spoke to his wife about meeting me (it is a family owned business) and she said, "remember that she's her mom".  I'm guessing that he felt that everything has been fine (when Brandy is in the gym) and then I sit in one class and the shit hits the fan.  Oops.  Sorry.  I guess I got all Mama Bear.  But I am very appreciative that they can recognize that and understand that.  I felt that showed some of their compassion I was looking for.  I said I would stay out of the gym as much as possible.  Seriously, that is a role better suited by her nurses.  And he appreciated that!

So, really I think it was very beneficial for both sides.  I definitely feel better about being there now.  I just want to know that my child is accepted and not thought of badly or treated differently in a negative way.

Okay, it's time to go and get Murphy from school.  Thank you so much for all your support!  It is so wonderful to know I have so many people on my side, backing me up and loving my Harlie!  I just can't thank you enough for that!

~Christy

Gymnastics Troubles.

So, last week at gymnastics, something really bothered me.  Brandy wasn't with us - so it was just me and Harlie.  Someone (someone trained, I mean) always needs to be within ear shot/eye sight of her to make sure that if she needs suctioning, we know it.  So, that means that I had to sit in the gym with the class - something no other parent does.  So, the kids (Harlie is in a 3-year old class) are on the mat and going around in a structured way from one piece of equipment to another.

Harlie was on the opposite side of the mat when she started coughing.  I usually give her a few seconds to see if she can clear it herself.  But she looked for me and then started to walk in my direction - through the middle of the mat - coughing the whole time.  Now, this is going to sound gross - but it's just the way it is - when Harlie coughs, stuff comes out of her trach.  If she doesn't clear it, then the secretions come out - and then she sucks them back in when she takes her next breath.  It's pretty gross and I can only imagine that it's pretty uncomfortable for her.  Clearly, she is not breathing easy like that.

So, seeing that she needed to be suctioned, I stood up, got the suction machine and headed over to her.  We met in the middle of the mat and I put the machine down and started to suction.  The instructor came over to me and said something like "Can you please do that over to the side?  That is distracting to the other students".

It took everything I had not to look as pissed as I was.  I replied with something like, "It's her airway and the kids get used to the sound of the machine after just a few times".

I went back to the wall and sat down and started thinking of other gyms I could look into.  All I could think about was that we are just not welcome here.  Oh, and that the distraction of the other children trumps my child's ability to BREATHE.  Got it.

So, when my child passes out on her way to the side of the mat - that won't be distracting at all.

Maybe we should just go to the parking lot to suction.  Think that would work?

And the world does accommodate us when we don't want distractions, doesn't it?  No.  It doesn't.  There are distractions everywhere.  Deal with it.  And I'm sorry, they are three and not in Olympic training.  They aren't doing handstands on the balance beam yet.  Chillax people.

Harlie started gymnastics in September.  So far we have been "spoken to" for:

1. Being 6 minutes late to class.
2. Taking pictures during class.
3. Suctioning on the mat during class.
4. Trying to encourage Harlie during class.

Keep in mind that Murphy has been in class since September as well, and I have never been "spoken to" for anything.  Not once.  And I've asked other parents - they've had no interactions like that at all with the owners or instructors.

Hmmm....

Oh, and apparently she isn't "allowed" to do a forward roll.  When the other kids do a forward roll, they make Harlie do a hot dog roll.  Jennifer was with her one Friday when she saw that and she asked the instructor why and the instructor said, "I don't know, the lead instructor told me she can't".  What?  No one asked/told me.  So, what other "rules" do they have for her that I'm not aware of?

After last week, I have really given this a lot of thought.  While I want her to be treated as equally as possible - I don't think her ability to breathe should be compromised.  Duh.  And I'm truly sorry if the other kids (or adults - because I think that's the real issue here) are distracted.  I can't imagine some of the kids that have been in her class since September even notice anymore.  Well, that is assuming that they haven't noticed that the teachers are making a big issue of it.  Because that is how kids learn - from watching adults.

The machine is on for less than 15 seconds.  We are in a HUGE gym, so the sound gets drowned out.  It's not even that loud to begin with.

Anyway, this whole situation is just bothersome.  My kids love it.  But of course they don't see/feel what I'm feeling.  At least I hope Harlie doesn't feel anything weird from them.  I can tell you this much - this gym crowd is a strict bunch.  So far, I have seen virtually no flexibility.  And that just couldn't conflict with me and our way of life more.

I hate that rules have to change for us - but no one hates that our life is different more than us.  It's not like we suction Harlie because we like it.  It's terribly inconvenient, to tell you the truth.  If I'm driving alone with Harlie, I have to pull over to suction her.  And if I'm on interstate, oh well.  And when I am in the car alone with her, I have to keep that in mind the entire time.  I put myself in lanes that allow for quick pullovers.  It's a total bummer and stress inducer.

So, a quick distraction for other kids?  Not really high on my list of issues I care about.  Sorry.  I kind of have my hands full as it is.  I can't do anything about that.

I think I would just like to feel some compassion from the gym.  I wish they could understand what Harlie has overcome.  Like a 5% chance of living.  And 15 major surgeries.  And several near death experiences.  And that when she is exercising her heart and lungs can't produce oxygen to keep up like they should.  Remember that in addition to a crazy heart, she only has three lung lobes instead of the five you are supposed to have.  So, making her walk farther than necessary, while coughing and not breathing the best she can, only causes her body more stress.

So, a friend suggested I set up a meeting.  So, I did.  And it's tomorrow morning.  I am not good with conflict.  And I hope this meeting isn't like that.  I just hope that the owner doesn't pick the focus of the other kids in class over Harlie.  Because that will make me very sad.  I'm hoping that they just don't get it.  They have never asked me one question.  I think that's strange.  How could you not be a little curious about her?

So, wish me luck.  I hope that this produces a better understanding and relationship when it is over.  This activity has been so good for her.

Thanks,
Christy

ENT Update

Friday ended up being a pretty relaxing day, in comparison, of course.

I took Cooper to preschool and then went to Murphy's school for our follow-up Child Study Meeting from October.

Jennifer worked that day, and took Harlie to gymnastics for me.  For some reason, her coaches were not teaching her/letting her do a forward roll.  Every time the kids did forward rolls, they had Harlie do a hot dog roll.  So, Jennifer went to them and told them that Harlie can do a forward roll.  Meaning that they should be teaching her how to do one.  They said, "oh, I didn't realize that".  What?  Ugh.  I mean, if they try to teach her, and she can't do it because of her cervical spine issues, or trach (which I really don't think would be the case) then that's one thing - but to just assume that she can't, well that stinks.

After gymnastics, Jennifer took Harlie to school.  She had to leave early to go to her ENT appointment, which isn't that far from the school.  Luckily Jennifer took her to the appointment so I could stay home with Cooper, get Murphy and take them to Murphy's doctor's appointment.

And since I got to stay home - alone - for a little while, I got to clean the house.  Yay!

ENT Appointment

A few months ago, Harlie's hearing aid was giving us feedback (you know, making that high-pitched sound) when in her ear.  Not good, of course.  So, I made an appointment to see a local ENT (her ENT is in DC) for an ear check.  The ENT said that her canal was impacted with ear wax.  So, we had to put drops in her ear for more than a week, then we took her back so the doc could remove the wax.  That was torture and it took three of us to hold her down.  Ugh.

At the next follow-up appointment, like six weeks later, she had fluid behind her ear drum.  And her ear tube had come out (it was her THIRD).  Ugh.  So, I was to give her Nasonex sprays up her nose for six weeks and come back.  Well, that's the appointment I forgot to make.  So, more than six weeks later, she finally had her ENT appointment on Friday.

And her canal is impacted with ear wax.  Again.  This doc was filling in for the other doc, who had her baby and is on maternity leave.  This doc said he would not attempt to extract the wax in the office.  He said it would be too painful for her.  He said she needs the OR.  Which I can see, considering how horrible it went last time.  And he said that her hearing (even with the hearing aid) is drastically reduced with that blockage.

The hearing aid being in her ear during all her waking hours prevents the wax from getting out.  And evidently, when you bathe a child and water gets in their ears, it helps to remove the wax.  Well, Harlie never gets water in her ears since water is never dumped on her head.  So, he said that we can get some ear wax dissolving drops to put in her ear each night.  While I'm grateful that there is such a product - I can't stand having to add another item to her nightly check list!!!!

Since it has been more than a year since she has seen her DC ENT, I would rather take her to see him for her "ear work" than having her go under anesthesia here in Richmond.  So, after I spoke to the local ENT on the phone about all this - I immediately e-mailed her DC ENT.  I asked him if we could skip the required clinic visit and go on ahead and schedule OR time for him to do a full "check-up" (remove the ear wax, put in another ear tube if necessary, a bronch, etc.) since we know that's our destination anyway.  She hasn't had a bronch since her last jaw reconstruction.  So, I would love to see how he thinks her airway is doing.  I can't help but think that her airway has improved (despite the fact that the graft on the right side died and had to be removed).

Well, less than 10 minutes later, he e-mailed back and said he agreed that a clinic visit wouldn't be necessary, and that he will have his scheduler call me to get it scheduled.  Woohoo!  I LOVE her ENT.  We are so lucky that he was the one working when she was born!

Hopefully we can get her in soon, since she's probably not hearing squat right now.  It is so amazing how she can trick us into thinking that she can hear.  It is only really noticeable when we tell her/ask her to do something that isn't part of a routine or when she isn't looking at us when we're talking to her.

Murphy's doctor's appointment went fine.  He is certainly growing.  He is in the 50th percentile for weight and 75th for height.  I will update you more on him soon.

More soon!!!
~Christy

Good Stuff.

I am so glad that you all enjoyed my last post!  Eleven comments in one day!  Thanks, friends!  I loved all your comments - you are all so wonderfully supportive!  And funny!  And I love funny!  

Speaking of funny... Cooper was having lunch the other day when I went to change the clothes in the laundry room.  And when I came back into the kitchen, this is what I saw:

The book was on the table when I left.  He just loves that book.  Someone gave it to Murphy years ago.  Thank you!  That is the gift that keeps on giving in this house.  And finally, Harlie likes books, too!

Cooper tries to talk.  A lot.  Some words are clear - like apple, bee, cars, boat, horse, duck, I don't know, and there you go.  He was saying something to Tom the other night.  And Tom guessed "banana" and Cooper said (while clapping), "There you go!"  He tries so hard to say "cracker", but it doesn't sound much like cracker at all.  And "rock."  But it comes out as "rot" with an emphasis on the "t."  Milk sounds like "ma" and he finally for the first time signed "milk" and I went crazy, in a good way.  It's only been over a year and he FINALLY signed milk.  I have one word for you.

Exhausting.  

It is so funny how different siblings can be.  Trust me, this is not a shocker, as I have three myself.  It's just even funnier when they are your kids and they are so very different, despite all efforts to remain as consistent as possible.

Okay, enough of my kids.  Now on to ME.

I just want to say for the record, that I am both amazed at myself - and super, duper tired - because I have run 56 miles in the last 9 days.  Isn't that crazy?  Okay, that's really not that crazy, given that there are way more people out there that are far more athletic and accomplished than that.  And that there are hundreds of people in my training group alone (Sportsbackers Marathon Training Team) who are doing the same thing I am. BUT, in my defense, considering the circumstances, I think that's pretty darn crazy!  It's certainly not something I thought I would ever be doing.  And trust me, I can feel it.  I wish I could lighten my daily load right now, but that isn't possible.

Although, since our area was hit with... tornadoes? Harlie's feeding and speech therapies were cancelled because there were lots of trees down and damage to the Children's Hospital.  While that is terrible - I can't deny that I was happy to get out of some therapy this week.  We still took her to physical therapy, though, since that is on the other side of town.  Since we didn't have therapy in the am, I took her and Cooper to school and went for my required run.  By the time I got home, I had barely enough time to eat and it was time to pick up Cooper.  And since Harlie was at school (normally she's home after therapy on Thursdays), I had to pick up Murphy early from school, then go and pick up Harlie and Brandy from school, then go to PT.  Whew!  Not having therapy in the morning didn't really provide the break I thought it would.

The day ended on an exciting note.  We finally got an upright freezer for Harlie's food storage!  Woohoo!  Oh, the things that excite you when you have a special need's child.

You might remember that we have to puree all her food.  I have been pureeing it, then freezing it in ice cube trays.  Then I put the frozen food cubes in labeled ziploc bags.  Well, storage - or lack thereof - has been a huge issue.  I can only puree so much at a time and then I run out and have to puree food at inconvenient times.  And I have to pack two meals - which is four food items - each day.  Then she eats two more meals at home.  I could go on and on... but the fact is - that I am SO HAPPY to have some room!!!   I know this sounds ridiculous - but trust me when I say that I fully expect this to be LIFE CHANGING!!!  And not just for me - Harlie will have better variety - and I can concentrate on different entrees and meals!!!  YAY for us!!!

Tomorrow we have gymnastics again.  And thank you Lindsay for reminding me that it is ribbon time!  It is the last day of the session and Harlie will earn her first ribbon and button to put on the ribbon.  I cannot forget my camera!

Again, thank you all for your comments!  It is so fun to be able to talk about nothing but good stuff.  Oh, how things have progressed to a wonderful place.  Who knew it would be like this after four years?!  We have come so very far!!!

Thanks!
~Christy

Gymnastics Pictures, Finally!

So, after six weeks of gymnastics I finally took some pictures!  I would have taken more - but I was asked not to.  Can you believe that?  I like the owner/instructor, but he is pretty darn strict.  I get that he has to be - for safety reasons and all, but c'mon!  The problem I have with being strict in certain ways is that it doesn't lend to flexibility at all.  And my life is all about rolling with the punches and is as opposite of strict as can be.  Each day is a battle of flexibility and problem solving and more learning.  I do not have the luxury of a strict routine, strict schedule, strict anything!

I know he doesn't like that we are never early.  Okay, okay... just a few minutes late on occasion.  Okay, okay... all the time.  Geez.  But, seriously - getting there before 9:15am is almost impossible.  And trust me when I say it is not for the lack of trying!!!  You should be a fly on the wall in my house in the morning.  Hey, my new response is "they don't call them special needs for nothing!"  hehe

Plus, let's get real.  These are three and four year olds.  In a recreational gymnastics class - for FUN.  They were stretching and I took these two photos (Harlie's in the dark pink)...

and he came over and asked me to stop because "this is a classroom style instruction and their focus is supposed to be on the teacher and you are distracting them from the teacher."  Now I ask you... do they look distracted?  Not one of them had a clue that I was taking pictures.

And I'll be honest... it took all my strength to smile "sweetly" and calmly leave the room.  When inside my mind was screaming, "have your kid almost die several times and have someone tell you that you can't take their picture when they are doing something you never thought they'd be able to do!"  But, I can't say that.  There is NO possible way he can look at it from my perspective.  Nor would I ever expect him to.  And I'm not going to play "that" card.  Unless I absolutely need to.

And I get that he has rules that must be followed.  And if one mom sees me taking pictures when she's been asked not to before, yeah, yeah, I get it.  But when I went back to where the parents watch through the glass, one of the moms said that he let her take a bunch of pictures the last week.  Later, when Brandy was in the room suctioning or something, he told her I could come back and take pictures now that they were on the equipment.  I'm kinda thinking that's a worse place to distract them (like when they're walking on a balance beam vs. stretching), but whatever.  I am nothing if not flexible.  And I can roll with the punches like no other.  So, here are some more pictures (and I am oh so grateful to have them!)...

Seriously, could they be any cuter???

Go, Harlie go!

Love, love, LOVE that Harlie's arms are up and she's enthusiastic!!!

That adorable outfit is courtesy of my friend, Lindsay.  She gave it to Harlie for her birthday.  So cute!  Thank you, Lindsay!

Harlie loves gymnastics.  The instructor says that she's not afraid of anything and wants to be so independent.  She asks for very little assistance, which is great.  She has wanted to jump with both feet leaving the ground at the same time for a while now.  She has practiced almost every day (since even before gymnastics started).  And last week she finally did it!  Now it seems she practices even more!

I signed her and Murphy up for another six week session.  I am anxious to see how things go with more time and experience in the gym.

Okay, that's it for tonight.  I'll have more pictures for you tomorrow.
Thanks!
~Christy

Gymnastics. The Good. The Bad. And the Ugly.

So, this morning Brandy and I took Harlie and Cooper to their first gymnastics class.  The class is from 9:15 to 10:00.  A 9:15 start time is a bit of a lofty goal for us - but I didn't really have much choice.  Harlie needs to be back home in time to catch the bus at 10:30.

Their classes are at the same time, in different rooms.  I chose to put Harlie in the 3-year old class vs. the 4-year old class because the class time is 15 minutes shorter (just in case she tires out) and I thought she would actually fit in better as far as physical ability with the younger girls.

Cooper is in a parent/child class.  Typically, I'm not a big fan of parent/child classes.  To be honest, I feel really silly in them and frankly, I'm not very good at helping my child get excited about whatever it is they want us to get the kids excited about.  Especially in a group setting.  BUT, I am willing to do what I need to do for my children's happiness and well-being.  Aren't I a good mom???

Back to the 9:15 start time being a lofty goal for us...

Harlie is NOT an easy child to get up in the morning.  Nine times out of ten we have to work pretty hard and long to wake her up and get her moving.  I don't know why.  She goes to bed at a decent time (usually by 8pm) and sleeps all through the night.  Twelve hours of sleep should be good enough, right? Then after getting her up, she needs to get her meds, she needs to be fed (which takes FOREVER) and we have to prepare her lunch, etc.

We did our best (after working very diligently) and got both kids out the door and in the car by 9:05am.  We pulled into the parking lot at 9:17am.  I know that I should have done whatever I should have done to get us there earlier.  I knew I was going to have to speak to the owners about Harlie's abilities and answer whatever questions they had for the instructors to feel comfortable with her.  But, I couldn't.  Sometimes it's just not possible.  Period.  I do my best and that's all I can do.  It's not like I was goofing off and, oops! guess I won't do that again.  No, it wasn't like that at all.

I suppose I could have gotten up earlier - before the kids - and prepared her breakfast and lunch, showered, dressed, packed her bags, etc.  But, I was tired.  And training for a marathon, my rest is important, too!  Maybe I should have done that stuff last night.  But I was busy doing other stuff that needed to be done.  So, that really wasn't an option, either.  Anyway, my point is that I'm NEVER early to anything, and not for lack of trying, either.  And if I'm only a couple of minutes late - I personally think that's an accomplishment.

So, we get the kids in the door and one of the owners comes up to us and asks if that's Harlie.  He is going to be her instructor and just had a few questions.

Of course Cooper isn't going to stick around for this conversation, so off he goes into the playroom they have there for waiting kids.  He knows about this room because we were just there with Murphy on Tuesday.

So, when I go to collect him from the playroom, he is not a happy camper.  Nor is he when I open the door to the parent/child class where all the punctual parents are sitting with their well behaved children sitting nicely on their laps, listening attentively to the instructor.  Cooper wails and squirms until I put him down and proceeds to take off and run amok through the room.  And, of course, I have to go leaping over equipment to catch him, and return him to "our" spot in the circle.  Well, let me tell you - he wanted NOTHING to do with any type of circle time or instructions given by anyone.

We were quite a sight, and not in a good way.  The more I tried to calm him down or keep him from running amok, the worse he got.  During the screaming and flailing, the instructor was still trying to keep the attention of the rest of the class and give instructions, while keeping all of this "fun."

At one point I asked one of the instructors, "what's the age range of this class again"?  And at another point, one of the instructors said, "Well it helps if you get here on time so he can listen to the rules".  hehe.  Yeah, right.  Cooper won't sit and listen to rules.  Are you kidding me?  Do kids his age even DO that????  And I wanted to say, "you have no idea how much work it took to get us here late, much less on-time"!

I couldn't make eye contact with anyone in the class.  The only person I saw (other than the instructors) was a mom who's son was in Murphy's class last year.  Honestly, I couldn't believe that she acknowledged that she knew me by saying hello to me.  Had she completely ignored me, I wouldn't have blamed her.  She asked me who Murphy got as a teacher this year.  But, that's as much as we could talk considering the circumstances.  She gave me the "I've been there - know how you feel" sympathy kind of look, which was very comforting and much appreciated.

There was no choice but to remove him from the class.  And frankly, I wanted the world to swallow me whole anyway.  I seriously couldn't get out of there fast enough.  The instructor said I should try to re-enter the room when they got on the equipment and maybe he would be better.

So, we waited until the kids started working their way around the room on the equipment and I brought him back in.  He just wanted to run amok again.  Which was even worse because now instead of just equipment I had to jump over to catch him, there were children everywhere!  The instructors were trying to catch him and contain him and engage him in activities - all to no avail!  To him - there was no one else in the room.  It was all about him and what he wanted to do.  Period.  He was an absolute wild child.  Like he was raised-by-wolves wild!

I could feel all eyes on me.  Judging me and my child.  And I know they are wrong.  Whatever they were thinking - they don't have a CLUE about me or my child or our life.  I know that.  But, it's really no consolation.  I was still embarrassed and very disappointed in my choice to enroll him in this class.  WHAT WAS I THINKING?!?!?!

We left again.  This time for good.  I came out of the room a disheveled sweaty mess.  Beaten.  By a 23-month old little boy.  In public.

Brandy came out of the room that Harlie was in and said she could hear Cooper crying.  She offered to take him so I could go watch Harlie.  Thank God for Brandy.  So, I went and watched Harlie and she was so stinking cute, it killed me!  The instructor would demonstrate what he wanted her to do, and she would watch, and then do the best she could.

There is such a difference between the way she moves and what she can do versus the way the other little girls moved and what they could do.  I am so thankful that she can do all she can, but I can't help but be a little sad, too.  Right now she doesn't notice.  But what's going to happen when she does?  And when will that be?   And she required a lot of one-on-one instruction.  Luckily, there were two instructors and four girls.

But, she stood in line, waited her turn, did what they asked her to do and looked like she was having a lot of fun.  The instructor said that she wasn't afraid of anything and that sometimes she held out her hand for assistance, but a lot of the times she refused his help, which he said wasn't disrespectful, just her way of saying she wanted to do it herself.  And he said she was very independent.  He said that if the class size stays the same - she will be great.  I asked him if I could pay a little extra if another instructor needed to be added for her.  Remember that he's the owner - he said that their job is to keep the kids safe, and if adding an instructor is required to keep her safe, they will not ask me to do that.  Isn't that great?!

So, in Harlie's case - a complete success!  I can't wait to see how things change from week to week.

After we got in the car to rush home so Harlie could catch the bus, I decided that I would call the gym and ask them to take Cooper's payment for his class and just apply it to Harlie's next session.  I really can't imagine taking him back there, to that class.  

But, a friend of mine said I should think about it over the weekend, calm down and make that decision next week.  I might ask the owners if he can go in that room when a class isn't in session so he can run amok and get it out of his system.  There was another mom there who said that her child was just like that for EIGHT weeks, until she finally got it and started participating like everyone else.  What I can tell you is that I don't have it in me to go through that.  No way.  I have too many other battles - I'm not paying money to fight that one.

Another thing - I know he needs more structure.  He's never been in line, or waited his turn, or been told to "freeze!"  He's never been to the library for story time where he had to sit and listen.  Our life just hasn't afforded him those experiences.  So, I'll see what I can do about exposing him to some of that and maybe just try again later.  I guess I'll see what they say and go from there.

Later in the afternoon, I heard a knock on the door.  Went to answer it and it was that mom that I knew from the parent/child class - with these sunflowers and a card for me!

Seriously???  What a nice person she is to bring me flowers and a card - knowing that I felt like crap about this morning's fiasco.  She totally made my day!  I really do feel lucky sometimes.  And loved.  Very, very loved.  Just not by strangers in the Otter/Pup gymnastics class.  Thank you, Brittany, for going out of your way to make me feel better!

That does make me wonder.... maybe the other parents just felt sorry for me.  Maybe they weren't judging me after all.  Yeah, let's go with that.

Well, it's Friday night, I have fresh sunflowers in a vase on my table for the first time in, well, ever.  The first week of 1st grade is over (thankfully! I'll write more about that in a future post) and the weather is cooling down nicely for a 55-degree, 15-mile run in the morning.  I think everything's going to be okay.

Thanks for reading.  And for not judging me.  In a bad way.  You can judge me in a good way, though.  If there is such a thing.
~Christy

First Day of School!

YAY!  Today was the first day of school for Murphy and Harlie.  The morning went smoothly and everyone got where they needed to be - with time to spare.

This is how I found Harlie when I went in her room this morning...

Here's the three of us getting ready to walk to school...

Here are two silly dads trying to figure out if they were happy or sad about school starting.  Tom is clearly faking his sadness.  And Preston looks like he's come to terms with his emotions...

The first week they let us walk the kids to their classroom.

Back home for Harlie's turn to go.  I decided to let her skip the hearing impairment instruction today for the bus ride.  She was so excited.  I think it was a good call.

Here's Brandy and Harlie.  Harlie was not being cooperative with the pictures today.

Putting the harness on for the bus ride...

Her going up the stairs - all by herself!  I love this bus driver!  She is so nice.  I hope we get to keep her!

All secure for the ride to school...

And a token pic of Cooper just so he doesn't feel too left out...

And everyone had a good day.  It was fun picking Murphy up at the end of the day.  Two of my neighbors have kindergartners, so we all got to be there to get the kids.  It was chaos for a few minutes as all the kids were dismissed.  But fun chaos.  It is nice to get back into the groove again.

Murphy started gymnastics today, too.  It is his very first "fun" activity.  He clearly doesn't want to do anything sports-related - so I thought I could pass this off as not being a sport, but still giving him some exercise.  He seemed to really like it.

On Friday Harlie and Cooper will take gymnastics, too.  Me signing them up all started with Harlie's physical therapist recommending it for Harlie.  Since she has loose ligaments, we should try to compensate by building muscle strength (since you can't do anything about the ligaments).  For example, when she wants to go one direction, and I want her to come with me, I cannot pull her arm with any effort whatsoever.  It totally feels like I'm going to pull her arm right out of it's socket.  It's a really weird feeling.  And she said gymnastics would help with that.  When I was looking at the classes offered, I realized that the boys would probably really like it, too.  So, I signed them all up.  We'll see how it goes for this first session and then go from there.

Tomorrow is Therapy Day.  Harlie has speech therapy, feeding therapy and physical therapy.  Normally, this occurs on Thursdays, but since it is the first week of school, things got moved around a bit.

In Feeding Therapy, a psychologist will sit in on the session to observe Harlie's behavior.  It is atrocious.  I can't believe how this little girl can break an adult into pieces in a matter of a few minutes.  It is now a battle just to get the tray on the high chair.  And now that she's almost four, she knows how to get it off.  Really, we're at her mercy in so many respects.

And it's such a shame, too.  Even when resisting every bite - she ends up eating a good volume - tonight's battle ended with a 9.5 ounce feeding (which is great).  That is clearly the only thing that is keeping me going.

Well, that's it for now.  I must get to bed.  I have an early run in the morning - ugh - 5:30am!!!!  These school hours are killing my training time!

Thanks!
Christy