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!

How much is that Doggy in the window?

Lately, Murphy has been missing our cat, Annie.  She died two years ago next month.  I'm surprised he remembers her, much less misses her.

In the past couple of weeks he's been talking about her a lot at random times.  And last night he woke up crying about her.  He said (through sobs) that he didn't even get to say good-bye.

Okay, mental note here folks - so this is what the experts mean when they say to be honest with kids.  We should have handled Annie's death differently.  We should have told him that she was going to die.  But, we were trying to protect him.  We thought we were making the best decision at the time.  I guess this proves that honesty might actually hurt less in the long run.

Then he said (through harder guilt-ridden sobs) that he couldn't remember what she looked like.  Oh, my.  Just go break my heart, will ya?  Then he told us that he cried about her during class a few days ago.  Geez.  What is going on????

We comforted him.  Told him it was okay.  And we told him that in the morning we'd show him some pictures of Annie and that he would feel better.  Then, the next thing I know, I said, "Murphy, would you like to get a dog one day?"

Oops.

The LAST thing we need is a pet.  But, I was raised with pets.  I had guinea pigs, gerbils, fish, a rabbit, and we always had a dog.  Hugo was our first family dog (that I remember).  He was a Shih Tzu and he was a great dog.  Our house was never without a dog.

And as soon as I moved out of my parent's house, I went and got Annie (1992).  My first cat.  A year later, I got Wendy.

Murphy with Wendy shortly before she passed (Oct. 2006).

Sadly, Wendy died while Harlie was still in the hospital after her birth.  Wow, that was a really shitty couple of months!

Anyway, my point is that I never thought my home would be without a pet.  And it was never my intention to raise children without a pet.

But, here we are with our hands more than full. And no pet.  And no plans to ever get one.  And with a six-year old who would love to have one.  And, personally, I think he would be quite responsible with one, too.

So, now I have thoughts of a puppy.  Which is crazy for so many reasons.  And here they are:

1.  Harlie is irrationally afraid of dogs.  Even puppies!  Like this one...

This is a friend's puppy.  He didn't bark and he was never put on the floor.  He didn't squirm or fidget in any way.  I don't know that you could find a less-threatening creature.  Now I ask you - what's so frightening about him?  Why is she like this?  She will get excited when she sees a dog - and point and then sign "dog" like she wants to see it, but then totally FREAKS OUT if it comes near her.  Grr!

But then a part of me says that we can't let her stay this afraid forever.  And I'm sure that it would just take a little time for her to get used to a cute, little puppy running around.  I'm sure she would see everyone else loving him or her and then she would want to, too, right?

2.  We have no money in our "budget" (ha!) for a dog.  There's food, toys, shots, pills and vet bills.  Ugh.

But, can you put a price on your children's happiness?  I mean really.  I have such great memories of having a loving dog while growing up.  Okay, so not all memories are great.  There was this one time when I was older and we had a German Sheperd.  I was walking her on a leash, and she saw a squirrel.  She took off and I didn't let go.  She drug me through an entire front yard before she stopped.  I was MAD!  I came home, dirty and beaten and screamed that I would NEVER walk that dog again.  Which clearly didn't last.  Like I said, good memories.  But, I digress...

3.  We just got new carpet.  Nice, new, clean carpet.  Granted, only in one room.  Hardwoods in the rest of the downstairs, which makes for easy clean up... but again, I digress.

4.  We don't have a fenced in back yard and Tom is adamantly against getting one.  So, walking would be mandatory.  But we do like to exercise.  And Murphy LOVES walking our neighbor's dog, Custer.

5.  The shedding.  Oh, the shedding.  This, I do NOT miss.  But, there are lots of breeds that only lightly shed.

6.  The time.  Oh, who has the time for a puppy?  Not us, that's for sure.  Our schedule is packed already.  But, we're always close to home.  We haven't been on a vacation in two years.

Despite all the practical reasons why we definitely should NOT get a dog, there is this little boy...

that would LOVE to have one.  Oh, and this one...

would love one, too.

And isn't life about the living, learning and loving?

But Tom still says no.  So, we'll just keep thinking about it.  Anyone care to share your pet or any thoughts on the subject?  And some recommendations, perhaps.  Just in case.  I mean, you never know...

Thanks!
Christy

Murphy Update

So, I never updated you on Murphy.  I've had a lot of people ask me privately about it.  And I think my experience might help or at least educate some.  So, here's what happened:

Tom and I got some questionnaires from Murphy's pediatrician.  We had to fill out some (separately) and his first grade teacher had to fill out a different one.

While that was happening the school conducted some tests.  He met with a bunch of different people.  This was in October (I think) so my memory isn't great.  But one of them tested his comprehension with reading.  She said that during the test he would read a sentence and then stop to tell her a story that the sentence reminded him of.  He did that throughout the whole test and his score proved he was very distracted.

So, we turned our tests in to his pediatrician and then Tom and I went in to meet with him about the results.

The results were very obvious.  He has ADD - Attention Deficit Disorder.  This is different than ADHD - Attention Deficit Hyperactivity Disorder.  He is definitely NOT hyperactive, that's for sure!

We certainly discussed lots of ways to help him focus at school.  But after a long discussion with his pediatrician, we believed that trying medication was the best way to go for him.  Tom struggled with this more than I, so it was not something we rushed into.

I think one of the major obstacles for parents in this situation is accepting that your child needs a daily medication.  It sounds scarier than it is (in my opinion).  For the past four years we have given many medications to Harlie.  One medication was Reglan (the one that has the commercial about the side effect called Tardive Dyskinesia).  I am happy to report that she is no longer on that one (with no side effects).  With every medication you have to weigh the risks vs. benefits.  And she's been on a heart medication for a while now.  And she will stay on that for a long time.  And she's still on reflux meds.  Not to mention what she's been on in the past (lots).

My point is that I'm used to giving meds to my kid.  I've accepted that meds are needed.  And quite frankly, I'm thankful that meds are available.  And if his doctor says he believes Murphy will greatly benefit from the medication, I felt like we had to seriously consider it.

Our thinking was that the side effects of the meds (in our case a loss of appetite and difficulty sleeping) was not as bad as doing nothing at all.  Without medication, he would struggle - and struggle a lot.  Here were his problems:

• He felt lost in class.  This kills self esteem and confidence and it can take a long time to recover once this happens.  
• He wasn't participating in class activities.  
• He wasn't playing with his peers.
• He couldn't remember his classmates names.
• He scored very low in the PALS testing.  His score was not indicative of what he knows, he just couldn't focus during the test.  Think of how this alone could affect his schooling and his ability to succeed! 
• He couldn't complete class assignments.  
• None of his issues were behavior related.  He didn't act up in class.  He didn't call attention to himself.  Every day after school during our walk home, he would tell me he had "another bad day" but that "I tried my best."  It killed me.  It was very obvious that he was trying and that he was disappointed in himself at the end of the day.
• He just couldn't focus for the length of time necessary to learn. Period.

The side effects of all of those things are WAY worse than the side effects of medication.  So, we agreed to try it.

In ONE day - he was a completely different student.  ONE DAY!!!!  Instead of not completing his assignments, he was the first to finish them!  And then he would help his classmates!  He started making friends and getting to know his classmates.  He would complete his homework in a fraction of the time he did before - and with way less instruction from me!

The medication was life changing.  No doubt about it.  He was prescribed the lowest dose.    And we hardly notice any side effects at all.  He definitely eats and sleeps more when he doesn't take his medication.  But, it's not an issue when he does take it, either.

Our follow-up Child Study meeting was last week and it went great.  His teacher said she can't wait to test him in the spring.  It is the same testing that was done prior to him going on medication - and put him at a pre-k level!.

The bottom line is that he is a happier kid.  And now he likes school.  And considering he's got a lot more school to go - that's a good thing.

Now you know!
~Christy

The Steelers

... are going to the Super Bowl!

I might have mentioned in the past that Tom is from Pittsburgh and, as required, is a huge Steelers fan.  I must say that I feel lucky to have married into a Steelers family.  It is a fun team to watch.  I love how people refer to their playing as "Steelers Football."  You won't hear anyone say, "They just aren't playing Jets football."  And the fans are unmatched.  First, they are everywhere.  They mourn a loss and celebrate a victory like no other!!!

I might have also mentioned that this particular group of people are the Steel City Connection.  And we just got a new home at the University Bar and Grill.  Last week's game was a little overwhelming for the new place.  They just didn't realize that Tom was serious when he said, "Expect about 130 to 150 people".  Oops.

Well, they had their game face on last night.  They were more than prepared.  And they were awesome.  We didn't have to wait any time at all for anything ordered.  The place was packed.  And loud.

Tom and me at the start of the game.

Mary Alice, Alisha and me.

This is just one part of the restaurant.

Me and Alisha celebrating with Aaron peeking in the background.

Ryan celebrating.

Teaching Donna and Aaron (newbies to the Steelers Nation) how to celebrate.  Psst... they are from NY!

Another part of the restaurant.  And more celebrating.

It was a hugging kind of night.

Me and Donna.

Donna and Aaron.

Alisha and me shortly after the big win!

Alisha, Ginger and me.

Good times!  Two weeks to the Super Bowl!!!

Go Steelers!
~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

One more thing...

before I forget.

Today Tom and I took the kids to the mall play area.  It is COLD here and I believe that Cooper needs to work out some energy to help him sleep.  So, we went today (along with everyone else).  Well, the whole time there Cooper would come over to us and put his hands out and say "where Harlie?"  He says her name like R-E.  It's pretty cute.  Anyway, it was like he was worried about her if he didn't know where she was.  He did that about 10 times.  Then one of the last times, after we pointed to her, he went running to her and hugged her!  It was so cute!

It is so great when they get along and love each other.  It makes all the hard times worth it.

Goodnight!

Ronald McDonald House and THE HARLIE CREW

I was so sleepy the other night, that I didn't finish telling you everything I wanted to.

Some potentially exciting news!  A while back Tom contacted the local Ronald McDonald House about donating some older work computers.  Of course they spoke about how we stay at the RMH in DC.  And that he was a kitchen designer.  She mentioned that they wanted to renovate the kitchen there.  Well, they contacted him this past week and asked him to bid on the project!  Of course, because they have a committee, they sent out 15 letters total.  As of Friday, only three (including Tom) had responded showing an interest.

I am sure there will be cheaper bids from other contractors.  But, I really hope that they look at the fact that Tom has stayed at a RMH off and on for four years now and he understands their needs better than most.  Because they house numerous families (the Richmond RMH has nine rooms) they need to have lots of storage that can be sectioned off for each family.  And then there is storage for food that is donated for all families.  Plus, there are washing issues - I'm thinking more smaller dishwashers vs. one large one.  Anyway, you get the point.

So, keep your fingers crossed that he can do the project!  It would be so awesome to do it since the RMH holds such a special place in our hearts!

And speaking of RMH, the one in DC built a new house and it opened in December!  It doubled in size and how has 26 rooms with private baths for each one!  YAY!  So, when we go in March (ugh) we will get to stay there.  Since they just opened, they registered at a few place for donations - like Bed, Bath and Beyond, Target and Amazon.com.  So, if you are ever looking for a charity (other than The Harlie Fund, of course) that's a great one.  And if you don't want to do money donations - you can always make food for the families staying there.  I can't tell you how awesome it is to come "home" after a long day at the hospital to home cooked food!   And brownies.  Especially brownies.

And speaking of The Harlie Fund... more exciting news I've been meaning to share with you...

You might have noticed the new section in the left column of the blog called THE HARLIE CREW.  Bill Jeffries of Kane, Jeffries, Cooper and Carollo, LLP (my sister's boss, and my boss when I can work - that's my part-time job I've been at for over a year now) started it a couple of months ago.  It is a group of "Harlie Fans" that have committed to make a monthly contribution to The Harlie Fund.  Isn't that the coolest???  And if a crew member wants me to, I can put a link from their name to their website.  So, maybe that could help you out, too!  So, contact Bill Jeffries if you are interested!

And I forgot to tell you that after feeding therapy on Thursday, as we were leaving, Harlie turned around to give the prizes that she earned for self-feeding, back to Allison.  It was so sweet!  Allison told her that she earned them, so she gets to keep them.  That girl asks for nothing material.

And, one last thing for this post (I'm going to make a new one for Friday's events)... I just want to thank our very special Santa Claus for the beautiful gift!!!!  I can't tell you how much I love it.  I actually got two things!  Anyway, I hope you know how incredibly thankful we are!  And how lucky we feel!  And I would love to thank you in person if you ever want to tell me who you are!  We are so incredibly blessed to have such wonderful support in so many ways!  And we are just so blessed to have Harlie.  And there isn't a second that goes by that I don't think about that.

Thank you all!
~Christy

Great Day!

Harlie had a GREAT day today!

Feeding Therapy - 9:30 - 10:30

Today Allison worked on self-feeding.  She used a three-section plate containing oatmeal, fruit and milk (high calorie Pediasure).  The goal is to teach her that each section gets a turn with no skipping.  Allison drew three circles on a piece of paper.  After a bite she earned a sticker to put in a circle.  After earning three stickers in a row, she earned a prize, which she got to choose.

Of course it wasn't as simple as all that.  She was hardly cooperative at first.  And it took a few other tries before we reached the sticker/prize plan.  She doesn't like to eat when we're feeding it to her.  So our biggest hurdle is that she lacks the motivation to feed herself.  But, when she saw the miniature slinky, she grabbed the spoon and took a bite!  WOOHOO!!!

She ended up eating 2.8 ounces total almost all by herself!  It really was great.  And even better is that we only have to try that at home two times by next Thursday.  Awesome!  That gives me some time to go and collect some prizes to help motivate her to take her bites.

The Grocery Store - 11:00 - 11:30

On the way home from feeding therapy, Brandy and I decided that we wanted a vegetable tray for lunch.    She suggested that we all go to the store together.  So, we did.  Right as we walked in, I saw one of those little kid carts.  Harlie RARELY goes to the grocery store.  So, we put her in front of the cart and away she went.  She was slow, but she walked the entire time with no complaints.  In fact, she LOVED it!!!!

We started in the produce and I picked out some cucumbers, broccoli, carrots and a red bell pepper.  Harlie was behind me and decided that we needed a green bell pepper, too, so she picked one out and put it in her cart.  Then she smiled.  Oh, it was so cute!

Then we headed to the canned fruit aisle.  She stopped and pointed at the jars of applesauce.  It was so cute to see her recognize a food that she eats!!!  Of course, we had to walk down the candy aisle.  Even if I don't get anything, I always have to walk down the candy aisle.  While I had stopped to check out some new chocolate, Harlie grabbed a bag of sweet tarts and put them in the cart.  Ah, we had to laugh.  She doesn't eat it - never has - has no idea what it is - but wanted to put it in the cart.  It was the prettiest bag - colored with purple and yellow and pink, etc.  Funny stuff.  They sure know how to package things to appeal to kids.

She got such a kick out of putting stuff in the cart.  And she loved putting the stuff on the belt to check out.  I normally don't care for going to the grocery store.  But she made it so fun.  And she walked the entire time!  It was great!

11:30 - 2:00

We went home, unloaded the groceries and then I headed to pick up Cooper from preschool.  We all ate lunch and then I put Cooper down for a nap.

At one point, I took Harlie to the potty.  She stood on the step stool and looked at herself in the mirror.  Then she touched her chest, right under her trach.  Then she pulled her shirt down - with both hands - to look at her heart scar.  After looking for a while, she pulled her shirt up to her trach (higher than it lays naturally) and then signed, "better."  Did she mean that it is "better" to cover the scar????  Seriously?  I signed "pretty" - but then I felt kinda stupid for doing that.  I don't want her to think of her scar as ugly or that it should be covered up, but I also don't want to discount her feelings.  I tried to come up with something to call it.  I met someone years ago that called her son's scar his miracle line or magic line or something like that.  So, maybe we'll call it her miracle mark or something.

Then she got down and left.  I told Brandy about it and then she told me that earlier in the morning when Brandy was brushing her hair and teeth, that Harlie examined one side of her face in the mirror, and then slowly turned to look at the other side.  She did that several times.  So, it appears that she has noticed that they aren't the same.

Ugh.  I don't want her to be ashamed or embarrassed or feel anything negative about her scars or her facial features.  Every scar has allowed her to live and be happy.  I want her to be proud.  But I know she is far too young to understand any of that.  

That wasn't so great.  

At 1:45 I went to pick up Murphy from school.   Then we came home to get Brandy and Harlie for more therapy.   And my Mom came over to watch Cooper.

Physical Therapy 2:30 - 3:30

She did great.  Last week, Traci had a hard time getting Harlie to cooperate and follow instructions.  After a few minutes Traci looked at me and said, "Is her hearing aid on?"  I checked, and nope.  Sure enough the battery had died.  She was much more cooperative after I put a new battery in.  Go figure.

This week she listened and followed instructions.  She is so happy to go to physical therapy now.  She really has a lot of fun there.  Today Traci had her walk on the treadmill with an incline.  She did that for five minutes!  She also does exercises and weights.  She's so cute when she works out.

While Harlie was in therapy, I sat out in the waiting room with Murphy working on his school work and reading.  As luck would have it, Thursday is also Murphy's library day at school.  So he always has new library books for us to read while we wait.

During PT, Harlie's new speech therapist came out to ask me some questions.  While I was talking to her, Murphy said he needed to go to the bathroom.  To get to the bathroom there, you have to go through a door, then there is another room that has the bathrooms, a water fountain and a long hallway that leads I don't know where and an exterior door.

I have no idea how much time went by from Murphy leaving till I heard his voice.  At first I thought it was another patient there crying.  But it sort of sounded like Murphy.  So, I thought he had left the bathroom and gone back to where Harlie and Brandy were.  Then I realized that the voice was screaming "Mommy!!!"  So the speech therapist said, "Oh no, he might be locked in!"  So, I got up and ran back there and yes, he was locked in.  He had been screaming for me and banging on the door.  Oh, he was SO upset!!!  I felt so horrible!!!!  I had no idea how long he had been locked in there!

He said he saw the EXIT sign and tried to get out that way - thinking he could just go around outside the building and come back in through the front door - but that door was locked too.  He could have unlocked it himself by turning the deadbolt, but he must have been panicked by that time.  Oh, geez!  Poor kid!!!

Speech Therapy 3:30 - 4:15

Harlie's new speech therapist is Becca.  And I really think they hit it off.  She was very engaging and within minutes, she had Harlie saying words.  She was wearing her speaking valve (PMV) and some words were so clear that I could understand what she said by just hearing her (and not looking at her sign).  Like - yellow, open, bye-bye, eye and ear.  There were more, but I can't remember right now.  Bummer.  She really did great and it was wonderful to hear her talking so much!  I couldn't completely focus on her because Murphy was reading to me.  But, I could totally tell that she was having a good time and hopefully learning at the same time.

Her therapist has to get authorization so I don't know if that will happen in time for next week's therapy.  I hope so, though, because I really feel like it was a good session.  Becca said that Harlie said 20 words total during the session.  Awesome!!!

My chiropractor appointment 4:30 - 5:00

Luckily, my appointment was practically around the corner from Harlie's therapy.  So, we put a movie on for the kids and Brandy sat in the car with them while I went in.  And I am so happy to report that I can start running again - small mileage, flat terrain, easy running.  I'll see how that feels and then go from there.  I have a really good feeling that I will be fine.  I just have to remember to take it slow and not increase my mileage or speed too much, too fast.

Well, that's it for tonight.  I am falling asleep while writing this.  And tomorrow is another busy day!

Goodnight!
~Christy

Busy days.

Tomorrow is Therapy Thursday.  Cooper has preschool and Harlie has feeding therapy, physical therapy and her speech evaluation with her new speech therapist.  And after all that I have an appointment with my chiropractor.  Hopefully he will tell me I can start running again.  I know my inability to run the past two months has greatly contributed to my funk.

I saw my chiropractor on Monday.  He said I need to do one-legged squats.  Ugh.  They are not fun.  But I need to build up my strength to help keep the ITB injury from coming back.  So, I decided to do a TRX class today at the gym.  I haven't done one in months.  It is really hard.  And clearly I forgot just how hard it is.  It kicked my butt!  And I will surely be sore tomorrow!!! Here's a video of what it looks like.  There are a million different exercises and degrees of difficulty.

I really needed to do something to get myself motivated again.  I am supposed to run the Shamrock Half Marathon in Virginia Beach on March 20th.  Just two months away!  Hopefully once I get back to running I will catch up quickly.

Friday is super busy.  Cooper has preschool, Tom and I have a follow-up child study meeting at Murphy's school (more on that later), Harlie has gymnastics, preschool, then in the afternoon she has an ENT appointment, and Murphy has a doctor's appointment.  I haven't quite figured out all the logistics yet.  For example, the meeting and Harlie's gymnastics are at the same time.  I got that one covered, but haven't worked out the kinks for her ENT appointment (which puts me on the other side of town during Cooper's nap and Murphy's school dismissal) and making it back home to get Murphy and take him to his doctor's appointment.  It will be tight to say the least.

After two days in a row of running around and not being at home at all, I will be so glad for Friday night!

Here are some random things from this week so far:

• Harlie's eating is going much better.  We got in four oral feedings today, which is the most we've been able to get in a long time.  I am so much happier when she eats well. 

• The other night Harlie was playing with a baby doll and a medical kit.  She took out her hearing aid so she could listen to the baby's heart with her stethoscope (it was really cute).  I love to see her pretend play, which she rarely does.  I went to put Cooper in bed and when I came back into her room, her hearing aid was gone.  It is clipped to her trach ties or shirt.  I asked her where it was, but she didn't answer me, which is typical.  When asked a question she usually just looks at me like I'm a total nut.  I looked around for it - checked the trash can, etc.  Couldn't find it, so I got a little inpatient and angrily signed, "Where is your hearing aid?"  She whimpered and turned around and pointed to her hearing aid case on her dresser.  She had taken it off, opened the battery compartment (which turns it off) and put it away - right where it belonged.  Oops.  I felt SO horrible! I signed, "Mommy's sorry, good girl!"  I felt like a total heel.  But she hugged me and all was fine.  

• Murphy lost another tooth last night.  I think it was his 6th tooth lost so far.  

• Cooper only knows one speed - RUNNING!  When we walked to get Murphy from school this afternoon, Cooper RAN the entire way!  I think he's pretty fast, too.  I have to jog to keep up with him.  Since we ran, we got there early.  Walkers get dismissed into the gym, so that's where we wait.  Cooper sat on one side of the gym, and then got up and ran to the other side and back, laughing the whole time.  He sat again, then jumped up and did it again.  He must have done that four times!  Then he ran to greet Murphy, then ran out of the gym and ran all the way home.  I hope he sleeps good tonight!  

• Speaking of sleeping, Cooper is driving us crazy.  Maybe someone reading this will have some experience/wisdom to share??  We moved him to a big boy bed in November.  He did great sleeping through the night for a few weeks or so.  Then he started waking up and coming into our room.  Several times a night.  We pick him up and take him back to his room and tuck him in.  He never complains, in fact he doesn't make a sound at all.  I thought for sure just quietly walking him back to his bed would do the trick.  But we are several weeks into it now - and there has been NO improvement.  It is at least twice a night and last night it was three times.  It is so frustrating!  And we are so tired!!!  Maybe all the running he did today will help.  My fingers are crossed!

Well, that's it for tonight.  Thanks for reading!
~Christy

One thing at a time.

We have a lot of goals for Harlie.  There are lots of things we are always working on.

For example - eating, speaking, wearing her speaking valve, using her signs, maintaining eye contact during "conversation", using her communication device, listening, answering questions, saying good-bye and hello appropriately, using the potty consistently (we're there with occasional accidents), walking up and down the stairs independently and improving her gross motor skills.  Just to name a few.

Now that she is four years old, I think I have finally figured out that it is better to tackle one major issue at a time.  I mean, we still work on a lot of those things no matter what (like eating, or saying good-bye and hello) but the major things (like potty training or wearing her speaking valve) must be done one at a time.  If I try to accomplish several of the major things at once, she fights me on everything.  Even the little things.  And then we are all miserable.  At the end of the day, I was happy because I really believed I was doing all I could.  I was fighting the good fight.  And I would eventually, win, right?

Well, forget that.  All I ended up doing was making her not want to spend anytime with me and wearing myself out in the process.

So, in light of recent potty training "success", and our feeding issues - I have put her speaking valve goals on the back burner.  She wears it at school for her teachers, but won't wear it at home.  Fine.  I don't care.  She's wearing it when it's most important, so it's still a win as far as I'm concerned.

Except for the fact that during the entire Christmas break she didn't wear it once.  I did attempt to put it on her a couple of times - but she immediately took it off.  Oh well.

So, today she goes to school.  She puts it on while there.  And right now it is 5:20pm and SHE IS STILL WEARING IT!!!  She's worn it while coughing and she wore it during a wonderful feeding at 4pm.

Of course she's had an accident each day for the past three days in a row.  And she is perfectly capable of being accident-free.

She is so hard to figure out.

Eating Update

Sorry it has been so long since my last post.  I've just been in a funk the past month, and writing has not come easy.  I really don't like to blog when I'm feeling down.  A part of me says that I should, because that's my reality.  And writing to you is my therapy, so it would make sense that I should blog even MORE when I'm feeling down.  But I just don't feel it.  And worse - I can't stand reading the posts I wrote when feeling down.  They just sound so whiny.

Anyway, I am happy to report that Harlie is doing much better with her eating.  During feeding therapy last Thursday, we talked about new strategies.  I know we need to keep trying new things to see what works.  But sometimes I just get tired of it all.  I just want her to eat so I can have some energy for other things that are important, too.  Like just being her Mom.

I think that's the thing that makes me most sad - and has been a huge contributor to why I've been in this funk.  It is so hard to just be her Mom.  And have fun with her.  When I have to make her do stuff she doesn't want to do - all day long (practically) it truly affects our mother/daughter relationship.  I try very hard not to take her walking to the bus in the mornings without so much as a wave good-bye, personally.  I receive no response to any of my "have a good day's" or "I love you's" as she walks out the door.  Grrr!

And I won't say there is no making her.  But it takes time.  Lots and lots of time.  For example... her hearing impaired teacher makes her students acknowledge her when they walk into her classroom.  I think that's great.  Harlie doesn't agree.  She can be SO rude!  Last week she did not want to say "hi" to Mrs. S.  So, she shut the door to the class and left Harlie out in the hallway.  She would wait a little while and open the door and (acting as if she was seeing Harlie for the first time) would say, "Well, hello Harlie!" and Harlie would try to come in without saying hello.  She shut the door again.

This went on for TEN minutes!!!!  Finally, Mrs. S opened the door, exclaimed "Well, hello Harlie!" and Harlie begrudgingly - and with bare minimum effort - waved hello and stomped past her into the room.  Oh, that girl is so stubborn!!!

Back to her eating... I don't know why she started to eat better after therapy.  Therapy itself was one of her least cooperative.  And we talked about taking a week break from all oral feedings.  As much as I want to take a break from it - I don't want to!  Something about going to get the can of formula.  It just makes me feel so guilty.  I don't know why.  I know either way - tube or oral - can or homemade - I am doing the best I can for her.  

And it's as if Harlie knows it.  She brings me to the edge and then has a great feeding to keep me from falling off.  And right on cue, the rest of the day (Thursday) and then every day since, she has been great!

And as an added bonus - Harlie and I had a great weekend together.  Tom went out of town to see a hockey game, so it was just me and the kids.  On Sunday, Harlie was more affectionate to me than ever!  It was so wonderful!  And she laughed more than usual, too.  It was just a great day.  And I can't help but think it had something to do with the major decrease in our "fighting" over eating.

So, I'm going to try to do what we can - while maintaining happiness.  And If I have to tube, then I'll tube.  And not feel bad about it.

In other news:

Today they canceled school for inclement weather.  I know they are just trying to keep everyone safe - but I'm betting they are regretting that call.  It didn't start sleeting until late afternoon.  Granted, it was icy, but the kids would have been home long before that happened.

And Tom is sick.  Most likely, it's the flu.  I've never seen him feel this bad.  He rarely gets sick.  And when he does it lasts for like 24 hours.  I really hope I don't catch it.  Because I am exactly opposite.  I get sick often and it usually hangs around for a while.

So, between the kids and Tom, Brandy and I worked our butts off today!  And we saw Despicable Me at least two and a half times (while we were working of course).  Which is fine by me, because I think it is my favorite of all kids movies.  Harlie got it for Christmas and clearly, Cooper has seen it too many times.  He tries to say some lines before they do.  And he is trying to say "oh yeah" like Vector does - complete with the arm motions.  I must try to get that on video!

Speaking of Cooper, he said his first sentence (other than "I want milk") the other day:  "Mommy, Harlie not sharing Buzz!"  I about fell over!  Jennifer had just walked in the door with Harlie, when Harlie picked up Buzz and walked away.  Cooper spoke and Jennifer and I looked at each other in total shock.  I'm glad she was there so I know I heard it!

Speaking of speaking, Harlie is getting a new speech therapist soon.  We took December off from speech therapy.  I had to lighten our load a bit for the holidays, so that's just the way it worked out.  We were having to leave early from therapy each time anyway to pick up Cooper from school.  We are going to start to see someone at Harlie's physical therapist's office.  The time works better, I think.  Same day, but we'll see her after PT. Hopefully that will work out okay.  I am anxious to see how she does after such a long break.

Well, that's it for now.  As always, thanks for reading!
~Christy

Happy New Year!

Okay, so I'm a little late.  I'm thinking no one is surprised.

Unfortunately, 2012 started a little rough.  Nothing major.  It was just a harder weekend than usual.

On Friday night, Harlie had her BEST meal yet!  She willingly ate almost every single bite!  She was cooperative and it was a joyful experience.  I was so happy!  I thought to myself, "This is IT! This is the turning point"!

Then on Saturday morning, she had one of the worst feedings yet.  Ugh!

That is one of the harder things (I think) about having a special needs child.  The highs are the highest of highs and the lows are the lowest of lows.  It messes with you.  And it is exhausting.

It didn't help that I spent almost the entire day (Saturday) in the kitchen.  And I don't even cook!!!!  Or pretend to like to.

First, there's breakfast.  That's an ordeal in itself because none of my family eats the same thing for breakfast.  Tom and I don't really like the same thing for breakfast (he's on a health kick and I like scrambled eggs with cheese, pierogies - thank you Maryann - and maybe a bagel, with a Diet Coke, of course).  Cooper has his eating issues (picky, picky, PICKY!) and Murphy seems to only want pancakes lately.  Then there's Harlie...

So, after everyone eats, there's cleaning up to do.  And we were running low on Harlie's food.  So, I made some things for her and pureed them.  There's the pureeing, the pouring, the labeling, and the clean up.  Make something else, and do it all again.

Keep in mind that while I'm doing all this - Tom was outside taking the Christmas decorations down and cleaning up the garage.  So, I'm getting interrupted every two minutes to encourage sharing, take Harlie potty, help with Play-doh, change Cooper's diaper, fix the boys snacks, give Harlie water and meds, etc.  And I had to take down the inside Christmas decorations.  No problem!

The next thing I knew it was time to feed everyone lunch.  That made a mess, of course, and after everyone was fed, it was time to clean up - yet AGAIN!!!

And after all that bleeping time in the kitchen pureeing Harlie's food - she REFUSES to eat it!!!

The worst feeding EVER came Sunday morning.  It was the first time that we had to pretty much quit.  It's so important to end a feeding with Harlie taking a bite.  I don't think that happened - for the first time ever.  She flat out refused to open her mouth.  Despite all motivators, etc.  She REFUSED to eat.  It was the worst.

And I can't explain how frustrating that is.  She needs to eat 40 ounces per day to maintain/gain some weight.  I can't just let her skip a meal.  And she would starve herself.  The "no kid has ever starved themselves" advice does not apply.  And while we're dealing with her issues, Cooper and Murphy are there - needing something.  There is no such thing as uninterrupted time when all three kids are home.  And Harlie's feedings are now back up to the 45-60 minute time frame.  The more she fights, the longer it takes.

So, Tom's frustrated, I'm frustrated.  We're both feeling the stress and so then we do what anyone else would do.  We yell at each other.  Well, it's not really THAT bad.  I'm just saying it's stressful.  And it's no fun.

Luckily, I got to leave.  I went and met two of the girls that I trained for the marathon with - Niki and Kat.  We are all nursing injuries, so we wanted to run just an easy three miles.  It was the first time since November 20th that Kat or I had run.  She's also got an IT band injury.

Well, let me tell you how great that was!  It was raining (and I don't run in the rain) but I didn't care.  It felt so good to put my running clothes on.  It felt so good to be running with friends and seeing other runners out.  It felt so good to talk to my friends again - that's therapy for all of us!  I knew I was missing running (have been on strict rest orders to let my IT band heal) but I really had no idea just how much.  It was so healing physically (stress reliever) and mentally!

That afternoon we went to watch the Steelers game at a new place.  The place that the club (Steelers fans) watched the games before just closed.  So, they found a new bar/restaurant, and this weekend was the first time there.  It is non-smoking (woohoo!) so I wanted to go to check it out and see if it would work to take our kids there in the future.  We've never been able to do that because of the smoke (a total NO GO with Harlie's trach and lung issues).  Personally, I loved the new place.  And they won, so the weekend ended on a good note.

Oh!  And Jennifer (one of Harlie's nurses) and her husband came up to watch the game, too.  During half time there is a give away for club members.  I gave her one of our tickets and she won a Steelers scrub jacket.  How funny is that?  She hasn't been to a game in forever and I've never seen them give away a scrub top.  Funny.

Anyway, I'm glad the weekend is over.  And I'm thrilled that the kids went back to school today!  YAY!  We were all more than ready to get back into routine again.

And to end this post on a positive note - Harlie had a better day eating today.  I'm not going to read into it anymore (yeah, right).  I'm just going to enjoy it when it happens.  We'll see...

Thanks,
~Christy

Thank you!

Before I write anything else, I want to thank an anonymous gifter.  I'll call her/him Santa Claus.

Santa Claus sent us a very, very generous and thoughtful gift for Christmas.  And I have no way of saying thank you, other than through this blog.

Ever since Harlie was born, I have had a difficult time writing thank you notes.  I have been overwhelmed by the love, support and incredible kindness and generosity shown to us by those we love and those we've never met.  Whether it was a meal, a card, a gift, a $5 donation or $500 donation - I am still amazed that people care enough to sacrifice their time and hard earned money for us and our sweet girl.  It's the act of pure kindness that makes the biggest difference to me.  When I'm having a particularly lonely-in-my-life kind of hard day - I think about all the people that have supported us in whatever way they could - and I don't feel as lonely anymore.

How do you thank someone for that?  How do I write something that truly expresses my sincere appreciation?  It seems an impossible task.

So, thank you very much Santa Claus, for the very kind letter and absolutely wonderful, generous gift!
~Christy