Bone anchored hearing aid saga...

This is something I've been wanting to blog about for a while now.  As it turns out I was pretty naive and thought that getting Harlie a bone anchored hearing aid would be fairly simple.  I don't know why I thought that.  Nothing has been simple thus far.  Yet I still have hope!!!

Sometime months ago I borrowed a bone anchored hearing aid (but not bone anchored, since it was on a soft band) for Harlie to see if it helped her at all - and to see if she would tolerate it.  This aid goes on her left side, the one without an ear.  Well, she did great.  She must have felt it helped her because she would ask for it.  I don't think she cares for the soft band (her skull is not symmetrical so it has a hard time staying on right).  But I do think she finds the hearing worth it.  Because she deals with it and doesn't fight putting it on (for the most part).

So, after about two weeks, we ordered one for her to keep.

There are two companies that make bone anchored hearing aids... Cochlear and Oticon.

There are three parts:  1) the piece that gets implanted in the skull, 2) the abutement and 3) the processor.  The processor is the hearing aid, the abutement is what the processor clicks onto to stay on the head, and the piece that's implanted conducts sound to the bone (or something like that).

Cochlear's processor is called Baha (which is so annoying) and Oticon's processor is called Ponto.

I didn't research this at all.  I just let Harlie's audiologist order what she thought was best for her hearing loss.  And she ordered Harlie the Oticon Ponto.  And it has worked great so far.

So, months later, I go to meet with a surgeon about getting it implanted in her skull, making it an actual bone anchored hearing aid.  Sounds great, decide to go forward and schedule it for June 18th.

Then they called me to talk about ordering supplies.  They think (based on her audiological tests done the day I met with the surgeon) that she needs the Cochlear Baha.  Apprently they have a "power" one and they said that she needs that one.  The problem is that she already owns the Oticon Ponto.

These hearing aids are more than $5,000.  I don't know how they think we're going to pay for two processors.  About a month or so ago we got a bill for $5,000 and it said that her insurance doesn't cover hearing aids.  Which, I think is criminal when it comes to hearing aids for kids.  I get that they don't pay for adults.  But the last thing kids need is for someone to not get them a hearing aid because they can't afford to pay for it.  Anyway, after several phone calls, they realize they didn't bill Medicaid. And after several more phone calls, I was told that Medicaid will pay for it.  Whew!

However, I can't imagine them paying for it now (in May) and then paying for a brand new one next month.  Even I couldn't blame them for that!

Another thing to know...

The Cochlear Baha can ONLY fit on the Cochlear Baha abutement.

But, the Oticon Ponto (the one she has now) can fit on BOTH the Oticon abutement AND the Cochlear Baha abutement.  This appeals to me because that would give her the option to use either processor depending on her hearing loss over time.  Once the abutement is implanted in her skull, there's no going back.  It cannot be changed.  Well, I don't think it can, anyway.

And another thing to know...

The hospital where she is to have this surgery only has a contract with Cochlear.  So, that's all they work with.

So, no wonder they think she should have a Cochlear Baha instead of the Oticon Ponto.

As a general rule - I like to have choices.  And there's only TWO companies that make bone anchored hearing aids.  Why the hell can't you provide both to your patients?  There is no way one is always better than the other for every single patient.  And we're talking about a decision that this patient will have to live with for the rest of their life.

Another thing to know....

This surgeon has never worked with Oticon before.  She didn't know if her tools would work with their materials.  And she needs to get a contract with Oticon in order to provide that product.

So, she said my choices were as follows:

1.  Go with the Cochlear Baha and hope that Medicaid will pay for both processors or try to return her current Oticon Ponto (which would have had to have been done by Thursday, so that's no longer an option).

2.  Go to a different hospital and surgeon who already works with Oticon and have the surgery done there.

3.  Stick with this surgeon - but know that it would be the very first Oticon she's ever implanted.  And she would have to set something up with Oticon to get them out there for the surgery.  So, we might not be able to get it all done in time for her current surgery date of June 18th.

I thought it over for a few days.  And then I spoke to a mom of a third grader with a bone anchored hearing aid.  She has the Oticon abutement and both the Cochlear Baha and the Oticon Ponto processors.  And she (the actual user of the product) said that the hearing quality is better with the Oticon Ponto.

Quite frankly, that's all I needed to hear.  One thing that was bugging me is that Harlie was only tested ONE time in DC.  Whereas she's been tested dozens here in Richmond.  So, which testing should I trust?  I have to go with our local tests, don't I?

Plus, of course they say they like the Cochlear Baha better.  They don't have a choice!

So, I sent an e-mail to the audiologist in DC telling her my thought process (which is to get her the Oticon abutement so she can have options down the road).  A few days later (which was Wednesday) I got a phone call from the surgeon.

After telling her my decision, she said, "Can I give you my professional opinion?"  Yes, of course.  "I think you're making a mistake."

What?  I just don't see how I'm making a mistake.  Doing it this way gives her the option to have either processor should one prove to be better than the other for her hearing loss.  And if in five years I'm told that the Cochlear Baha is the better processor, well I'll pay for it.

How can that not be the best decision?!

She wasn't a believer.  She said that Cochlear has been around longer than Oticon (is older always better?).  And that they have a better product than Oticon.  And that the hearing quality is better than Oticon.  But, how does she know that?  If all they ever see is patients with Cochlear Baha's, how the heck does she know?

Harlie's audiologist here said that they have had more success with Oticon.  Now that's a valuable statement.  And that the repair rate is lower with Oticon (meaning that it's more durable for kids).  Also a valuable statement.

Personally, I think I just saw the money making side of medicine.  Doing it my way means the surgeon doesn't get to order a $5,000 processor.  And it makes NO sense that my way isn't the best choice.  She can have either processor!!!  What could be better than that?!?!

Then she said they might not be able to order it in time for surgery on June 18th.  I said I was fine with that.  No rush.  If it needs to be rescheduled, so be it.  And if Harlie doesn't get better soon, it will need to be rescheduled anyway.

We hung up.  I went to the grocery store.  I gome home and the audiologist called.  She said she had spoken with the surgeon and she just wanted me to confirm - again - what my decision was.  And she said that the surgeon just wanted to make sure that I understood what I was doing.

Really?

Was that last phone call really necessary?

I've been working on this post since Wednesday night and between then and now, I've made a decision.  I'm canceling this surgery.  I can totally see this surgeon coming out of the OR complaining about the Oticon materials.  Or saying something negative to prove that the Cochlear is better and that I made a mistake.

I have no knowledge as to her surgical abilities - but it's pretty clear that she's already made her mind up about Oticon (even though she hasn't ever used their product).  Kinda reminds me of when we ask Murphy or Cooper to try a food and they act like it's burning their tongue the second it goes in their mouth because they already knew before "trying" it that they weren't going to like it.  

When it comes to the medical professionals in our life - I need a doctor that's willing to think out of the box.  One that's open to new technologies and products.  And one that can see the benefit of giving my daughter options.

So, now I need to call and make an appointment to see a different surgeon, and start the whole thing over again.  Ugh.  I'm going to see a doctor that Harlie's already seen before (here, locally).  I hear that she's booked to July.  And that's just to get in for a consultation.  I was hoping that we would be able to get it done before her surgery in August.  I just think after her jaw surgery, any surgery is going to be traumatic.  Whereas if I did the smaller procedure first, it wouldn't be as traumatic.  And that's one of the reasons why I was going to go to DC for this.  She's comfortable there.  And they have the cardiac support in which I am most comfortable.  And that cardiac support knows her, too.

It's really frustrating when I think of how much time we're going to lose by not doing this as scheduled. It will take 7-8 months after the surgery for her to be able to actually use the abutement for the processor.

But a good surgeon should reassure me, with confidence, that they can perform the surgery and do it well.  And she has not done that.  She wanted to reiterate that she's never done this surgery with Oticon materials.  I think it's a piece of titanium, that was designed to do the same thing as the Cochlear piece of titanium.  I mean how outlandish can it be?

Well, that's all I have the energy for tonight.

Thank you!
~Christy

All kinds of stuff...

I started writing about the We heart Harlie event today - but it's not finished.  So, I thought I would update you on some other stuff in the meantime.

Random Thoughts

I cleaned out Harlie's closet the other day trying to consolidate some of her medical supplies.  They were over taking her whole closet and we had very little room for her clothes.  And I'm sorry - but she's a GIRL and that's just NOT right!

Anyway, the first 3-ring binder I put together for all of her medical information was in there.  And I put it on her dresser for me to go through and figure out what needs to be saved/trashed.  I still haven't gotten to that yet.  But, anyway (geez this story is getting longer than I intended) tonight it got flipped open and it landed on a pediatrician's well-check appointment sheet.

Do you know that at four months old she weighed 9 pounds, 3 ounces?  And she wasn't born premature.

For some perspective, I took Rooney to the vet yesterday (Monday).  He will be four months old next week and he weighs eight pounds even.  Funny.

Teeth

So, for most of last week I kept Harlie home from school.  I was trying to get her well so she could enjoy her big day on Saturday.  I let her sleep in and Terri and I were downstairs.  The monitor was silent and then we heard "MAMA!"  Well, I was involved in something, so Terri went upstairs to get her.  She got her up out of bed and told her to go potty.  But, instead she went to the top of the staircase and yelled for me.  I couldn't hear that though because she wasn't close enough to the monitor and her little voice does not carry that far.  So, she went potty and Terri got her dressed, brushed her hair and her teeth and then she came downstairs.

She walked straight to me and held her hand out to give me something.  So I opened up my hand and she dropped a small item in it and never stopped walking.  She walked right by me and went to Rooney, sat down and starting petting him.  I looked at my hand and it was a tooth!

She pulled out her own tooth!!!  And then held on to it while Terri was getting her ready.  At first I thought maybe it just fell out.  But, never - not even once - has one of Murphy's teeth fallen out without help.  And I had NO idea it was even loose!  So, that's how tough my little girl is.  She pulls out her own teeth - no muss - no fuss.  And was blase about it, to boot!  She's something.

On another tooth front, Harlie winces in clear pain when I brush her lower right teeth.  I don't know if it's a tooth pain thing - or a jaw pain thing.  The only reason I think it could be jaw pain is that a screw from her previous jaw reconstruction is starting to poke through.  This happened after the first one, too. It's really disgusting.  The screw is pointed downwards and you can see a sharp protrusion on her jaw line.  If you feel along her jaw line, you can feel how sharp it is and it feels like it's going to come through her skin at any moment.  She has NO fat whatsoever to help pad it.

It's hard to think that she has to wait THREE more months before they can fix the screw problem.  It feels like an eternity!  But, I'll call her local dentist tomorrow just to make sure it's not a tooth pain issue.  Although, if it is, I have no idea what we'll do about it.  It complicates things that she'll be seeing a dentist who specializes in this sort of thing in just three months.  I'm really not ready to deal with dental surgery at this point.  I was seriously hoping we'd get through all the other body parts first.

Harlie's current health status

Well, she's staying home again this week.  I hate to say it - but this sucks!  She has been more sick this year than EVER.  And I am seriously beginning to think that her school environment must have something that her system doesn't like.  She was in preschool at a different elementary school (lots of exposure) for almost two years before the start of school in the fall - and she rarely missed school because of sickness.  Surgery, yes.  Sickness, no.

I've lost track now - but I think she stayed home last week Monday through Thursday.  She got better each day, and by Friday I felt she was more than well enough for school.  On Monday, I had to pick her up at noon.  Terri said her nose was running constantly (not clear, either).  I know, ewww.  Anyway, so I picked her up and brought her home.  We didn't have to wipe her nose once for the rest of the afternoon.  Interesting.

That day I spoke with her pediatrician.  He said we are doing all we can at this point.  She has pseudomonas and was on the antibiotic Cipro and is now on antibiotic breathing treatments, Tobramycin (a 28-day treatment).  I know a lot of trached kids get pseudomonas.  And I can tell you that I had never heard of it until Harlie got it.  I know non-trached people can get it, but I don't think it's common.  I think it happens more in a hospital setting.  I don't see her passing it to a typical kid.  So, I don't think her classmates are in danger of contracting it.

However, he said that we need to keep her "away from the petri dish" that is elementary school.  She's already weakened as it is.  So, while I don't think she can pass it on, I think she's more susceptible to catch something else.  I hate to keep her out so much.  But, we need to think about getting her well and back to her baseline - long before her big surgery in August.  Considering the circumstances, now I am glad our surgery date is late August.  If her surgery date was in June I would be SO panicked right now.  There are so many different doctors involved in her surgery that we had to schedule it six months out.  If we had to reschedule it would be awful!!!

I don't know what this means for her schooling for the rest of the year.  Do I keep her out?  Do I ask for home schooling?  Do I just wait another week and see?  I just don't know...

Speaking of Boston Children's Hospital...

I was on the phone again today with the girl that's helping me get everything scheduled.  Sarah is her name and she seems really nice.  And patient.  I suppose she does this for a living, so she's used to it.  But scheduling her pre-op days is making my head hurt.

Just to give you an idea of what I'm talking about...

On May 7th this was our tentative schedule:

Tues - July 24 - Dental appointments (molds, and consult) and plastics consult
Wed - July 25 - Unknown appts (trying to schedule CT scans for this day)
Thurs - July 26 - Pre-op blood work, cardiac, anesthesia, nurse, etc. consults
Fri - July 27 - probably nothing, can most likely go home in the morning or night before

A few weeks later this was our tentative schedule:

Mon - July 23 - CT scans with/without anesthesia
Tues - July 24 - Dental appointments (molds, and consult) and plastics consult
Wed - July 25 - No appointments, we have the day off
Thurs - July 26 - Pre-op blood work, cardiac, anesthesia, nurse, etc. consults

Sarah was told they don't do outpatient CT scans on Wednesdays (or something like that) so she had to add Monday to our schedule.  Neither of us loved the idea of having a day off (Tom won't be traveling with us, so that wasn't appealing to me).  So Sarah said she would try to schedule Thursday's stuff for Wednesday.

Then a lady from CT called me to go over her history.  She told me two things.  One, they will not do a CT scan with anesthesia on a girl with cardiac issues whom they've never seen before.  So, an 8am CT scan with anesthesia will not work.  Two - they do CT scans on Wednesdays.

So, I said that I wanted to try to do the CT scans withOUT anesthesia, since she's been able to do that the past two times with no trouble.

The problem is that the scans will be done with contrast.  So, if they inject the contrast, and then try to do the scans but she isn't cooperative, then we won't have enough time to get anesthesia in and done before the contrast is gone.  And then you have to wait 24 hours before injecting more contrast.

We ran into this challenge in March before Harlie's pacemaker surgery.  But, she did wonderfully, so I stressed for nothing.  Will the same be true in August?  Hard to say.

So, she thought maybe we should try for no anesthesia on Monday and then if that didn't work, we could fall back on Wednesday as a back-up plan.  However, when she looked in the computer, she could see that all her pre-op stuff had already been rescheduled for Wednesday, so now there's no room for a CT scan with anesthesia.

I asked her to please call Sarah and have them figure it out.  I wanted OUT of this logistical/planning nightmare.  See why I hate any kind of planning at all?!?!?!

Oh, and to make things worse - when you throw in plane tickets, whew!  Tom said that flying on Sunday night was 3x more expensive than flying on Saturday.  So, he wanted us (Harlie and I) to fly up on Saturday.  That meant that we would be there for like five nights.  Ugh!

So, today I spoke with Sarah again.  She had not spoken with the CT scan person so she hung up with me, and called her, then called me back.

So, now here's our latest tentative schedule:

Tues - July 24 - Dental appointments (molds, and consult) and plastics consult

Wed - July 25 - CT scans
Thurs - July 26 - Pre-op blood work, cardiac, anesthesia, nurse, etc. consults

Except I can't remember if the CT scans are scheduled for early am and the pre-op stuff is in the pm, with nothing on Thursday.  If that's the case, we have no back-up plan for the CT scans.  No pressure there!

To complicate matters even more... she told me that she can't actually schedule the CT scans until they have some data on Harlie's cardiac situation.  So now I have to get medical records in her hand before she can schedule it.  This was the same story back when I was trying to schedule the first appointment.  Medical records.  How I hate trying to obtain medical records.

Ugh.  See why my head hurt today?  Of course, my lovely children didn't help me with that.  While I'm on the phone trying to focus on this mess the boys were asking me for freeze pops, help with homework, fighting and playing with loud toys in close proximity to me.  And Harlie was yelling at me to get off MY computer so she could get on You Tube and watch Simon's cat...

Just another day in paradise.

Thank goodness for this little guy...

He just makes everything... better.  And some people told me I was crazy to get a puppy.  No faith, I tell you!  Tom says my heart is full now and that Rooney has squeezed him right out.  While it might appear that way sometimes, that is not really true.  I have a very large heart and it still has plenty of room!

Well, that's it for now.  I know you're glad about that.  You probably need to go out and get yourself a puppy to help lower your stress after reading this mess.  Okay, maybe a glass of wine or cold beer would do.  But, I think I'm past that at this point.  And I'm going to try to run more again.  Which means I need to drink less alcohol and more water.  Boring!

Sadly, I have WAY more to write about.  So, hopefully I'll get to update again soon.

Thanks!
~Christy

Thank you

I have so much to write!  But, it's already 10:30pm and there is no way I can stay up to write tonight.  But I am so looking forward to sharing all the details of the We Heart Harlie event on Saturday.  It really was fabulous.  Well, from my point of view, I mean.  We were surrounded by good, caring, loving people and it felt incredible.  How often does that happen in your life?  I might not always feel this way - but we are really lucky people.

So, until I can write more...

I want everyone to know how much Saturday's We Heart Harlie event meant to us.  The emotions are complicated when someone throws a fundraiser for your family.  I'd give ANYTHING to be the Giver instead of the Receiver and have a healthy child who doesn't have to live this kind of life.  But, to know how much she is loved and how much we are loved, is a blessing beyond words.

I know you are all busy (and generous!) people and I just want you to know that you taking the time out to come support us means the world to us.  And for those of you that donated your money, time, services or products... Thank you!  You made a HUGE, positive difference in our lives.

I can't wait to show you the pictures that Paige Stevens Photography took!  I know she got some awesome ones!

There is so much more to share!!!  Soon, I hope.

Thank you for supporting us!
~Christy xo

Raffle Items - Woohoo!!!

Wow.  This We Heart Harlie fundraiser sure is getting big!  I must admit that I'm a little nervous about Saturday.  The whole thing and all the feelings that go with it are overwhelming to say the least.

And look how generous people are!  Here are some (we are still getting some items in) of the items in the raffle (and FYI, you get to put your tickets in for the item you want to win):

Adrenaline Sports
Health First Chiropractic 
Marianne Caminiti Design Services and Decorative Finishes
Photography Session with Paige Stevens Photography, valued at $150
Willow Tree Foundation Necklace (designed by Lisa Leonard), courtesy of Ann Schrooten
Tastefully Simple Gift Basket, Courtesy of Bridget Murrell
Thirty One Thermal Summer Tote, Courtesy of Jennie Schuetze
Adventure Bible from Lifeway Christian Stores
Saxon Shoes - $50 gift card
Two Master Cho's - Tae Kwon Do packages and uniforms
Richmond Olympiad package
Melody Magic Music Studio - $25 gift card
Boychik's Deli - $25 gift card
YMCA - (2) One month free memberships
Mad Science Camp - one week free summer camp
Life is Good store - $20 gift card
S.D.G. Artistry, Inc. - "Just Breathe" artwork valued at $50, courtesy of Karen Weddle
Olympus Digital Camera, valued at $85 - Courtesy of John and Jackie Hudson
Red Robin - (2) $25 gift cards
Authentic Lunch Pail signed by Virginia Tech Defensive Coordinator, Bud Foster, valued at $100
Scents of Serenity - $100 massage certificate, courtesy of Chris Woody
Lipstock Lasik and Cataract Center - $2,250 off lasik surgery
Jones Flowers - (5) Pairs of hanging flower baskets (2 baskets per winner)
Beach Basket, courtesy of Mary Ann Bowser
Arts and Crafts Basket, courtesy of Mary Ann Bowser
Children's Museum of Richmond, One year family membership, valued at $125

That's all I can type for now.  I am falling asleep again.  I will come back and continue to link all these contributors to their websites.  Whew!  My days are really wiping me out lately.  I promise I have so much more I want to share!  One little secret is that I think Harlie is going to go back to school tomorrow (Friday).

Okay, I'll be back to update this post tomorrow.  I hope.

Thank you so much!!! xoxo
Christy

We Heart Harlie Info

Here are the blog posts I'm working on for the near future:

Harlie's BAHA surgery and new developments
Boston Children's Hospital pre-op appointments
Harlie's health status (she seems to be getting better!)
Mother's Day
Our mini vacation to Isle of Palms (yes, like weeks and weeks ago!)

So, stay tuned!

But, for tonight, I'm going to focus on the We Heart Harlie event on Saturday.

Things are really coming together.  Lynda has been working tirelessly on all the details.  Our Daisy troop moms have been awesome and I feel so lucky and blessed with how they have welcomed Harlie into their hearts.  They are all busy mamas and are going out of their way for us.  It is an incredible feeling to be on the receiving end of this kind of love and support.

Schedule of Events for Saturday, May 19th

8:30 - Welcome
8:45 - Zumba (35-40 minutes) in the gym
9:00 - Adrenaline (60 minutes) outside
9:15 - Relay races outside
9:30 - Tae Kwon Do by Master Cho's (30-35 minutes) in the gym
10:00 - Raffles

They will have all of this posted at the school so people will be able to see where to go and when.  And please keep in mind that this schedule is subject to adjustments.

I was trying to list all the items that are being raffled.  However, I cannot keep my eyes open.  So, I will have to do a separate post tomorrow for that.  Trust me when I say that there's a ton of GREAT stuff!  It's really so exciting!

Thank you so much to all of you who are making this happen!!

Much love,
Christy

Still sick...

Harlie is home again from school.  Had another fever last night.  On oxygen again last night (every night since Thursday).  I don't know what is up with her, but I am so over it.  I just want her to be well again.  I might have to take her to MCV and have them do some blood work.  I feel like we're missing something.

I talked to the girl from Boston Children's yesterday.  I'll update on that later on today.

Thanks,
Christy

We Heart Harlie Flyer

Here is the We Heart Harlie flyer for the fundraiser which will be on May 19th.  Wow, it is right around the corner now!  Harlie drew the heart and colored it all by herself.  That was Brandy's idea - and what a great one!  Thanks Brandy!  

And Ray Holmes from Uptown Color provided our flyers for us - free of charge!  And they are on really nice paper, too!  Thank you so much!  I am going to post all the generous people and companies after the event - once they are final.  We are still getting products in for the raffle.  Thank you!

Crazy week

What a crazy busy week!!!  Here's how the week went:

Monday

Cooper started swimming lessons.  Unfortunately, I have to pick him up an hour and a half EARLY from preschool.  Ugh!  But, it was the only time that we could make work with everything else.  So, it just has to be done.  He will go for two weeks.  He took right to it and is doing great!  Oh, I can't tell you how grateful we are to have this not be a struggle!

Harlie came home early from school because she was sick.  Again.

Murphy had art class and cub scouts that night.  Harlie had a daisy meeting, but I didn't take her because she was miserable.  So I went without her :-( and we had a meeting about the We Heart Harlie fundraiser, which is going great!  I just can't believe how kind and generous so many people are!  More about this later.

Tuesday

I took Harlie to see her pulmonologist (another day absent from school).  That was a four-hour appointment.  They took some secretions to culture (takes about five days to know what's growing and what antibiotic is best to kill it) and they took x-rays and her lungs looked okay.  We went over her symptoms (occasional fevers, tons of secretions, overall yucky-ness).  He thought it was tracheitis.  So he called in a prescription of the antibiotic Cipro and we went our merry way.  

Unfortunately, our pharmacy didn't have Cipro in stock and they called around to other pharmacies and couldn't find any around.  So, they had to order it, which meant that she didn't get her first dose until Wednesday afternoon. 

While we were at the appointment, I got an e-mail that the chicken eggs in her class started hatching.  Ugh!  She was obsessed with those eggs and I hated that she was missing the excitement!  

 

This week at school was Teacher Appreciation Week.  I just love how they organized it at Harlie's school.  Normally, students have to do something different each day (like bring a flower on Monday, write a thank you note on Tuesday, etc.).  Well, for someone like me, that's just too much to remember. And I am sure to disappoint.  But, at Harlie's school (which is different from Murphy's of course) they assigned each kid to a particular day of the week.  That way, the teacher got something each day from several students and we only had to remember ONE day!!! Now I can handle that!!!  Thank you very much to the genius that thought of that!  

Of course, Harlie's day was Tuesday and she didn't go to school.  Typical.  Sometimes, I just can't win.  

Wednesday

It was my Mom's birthday.  But, shhhhh.  Don't tell anyone.  She really doesn't like her birthday.  Which takes a lot of pressure off me.  Thanks, Mom!  We surprised her by all the girls of the family going out for dinner together.  It was my mom, my sister Sandy, her daughter Jordan, my sister-in-law Nancy and her daughters Maggie and Kelly and me.  I thought about taking Harlie, but she woke up with another fever that morning (so no school - again) and was not up for going out.  

Thursday

Harlie returned to school.  And, of course, I forgot the teacher gifts (her KG teacher and her HI teacher).  But Harlie LOVED seeing the chicks!  In fact, the first thing she "said" that morning (in sign) was "baby chicken." That was her main motivation for going to school.  

Cooper finished up his first week of swimming lessons and did great!  He can now get a toy from the bottom of the shallow end of the pool (she has to help push him down) and he can swim with his hands together out in front of him, while his face is under water and he can float on his back for five seconds without moving.  Woohoo!  I can't wait to see how he does next week!

Harlie had speech therapy and physical therapy and did well at both.  That afternoon she made cards for her teachers.  

This card was for her HI teacher...

And this one was for her gen ed kindergarten teacher...

I just can't tell you how incredibly proud I am of her for being able to make those cards.  I had no expectations, really.  And she decided what she wanted to draw and did it without hesitation or help from me.  Even though she missed more than a month of school this year, and it was the first year with her HI teacher and with the HI program at this school (there were a lot of learning pains) she still made so much progress!!!!  

Then Brandy brought Brodie over for a visit.  Harlie just loves Brodie!  And I thought this picture was so funny of Brodie...

This sickness of hers comes and goes pretty suddenly.  She was fine during the day and awful that night.   It's been crazy.  By Thursday night her oxygen saturations were pretty low for her (she's normally in the mid-80s to low 90s) and they were staying around 78.  So, I put her on oxygen for the night.  Plus, she had developed a cough. 

Friday

Murphy turned EIGHT years old.  Wow! My how fast the years have gone by! 

I feel terrible because we never planned any kind of party for him.  We just couldn't get our act together.  And what he wanted was more than what we wanted to pay.  He seemed happy with the idea of doing pool party when the pool opens.  Overall, I think he had a good day.  He got a scooter...

And some Lego sets, of course...

And me, Tom and Cooper went to school to have lunch with him.  He asked for crab legs for dinner, but they didn't have any (seriously, they were super expensive, and we're on a budget!) so Tom got shrimp, which he loves.  He was happy.  And Tom made this awesome blackened avocado salsa/stuff for us.  YUM!!!

After dinner, Tom took Murphy, Cooper, and two friends Cole and Matthew to get ice cream.  I had to stay home with Harlie because by then she was feeling really miserable again.  Ugh.  I am SO ready for her to be well.  And she BETTER freaking be well for the summer.  Because I don't even want to think about her surgery and what it would mean if she were sick.  

On Tuesday when we were with her doc he asked me if she had a cough.  Well, she's trached, so she always coughs - it just goes with the territory.  However, by Friday she definitely developed a real cough.  I called her doc (the pulm) on Friday morning and left a message that overall she was NOT improving - if anything, she was getting worse.  And her sats were low for her.  Of course, I still sent her to school that day.  Her spirit seemed good - despite the crazy amount of secretions (worse than earlier in the week) and it was Field Day at her school.  So, we sent her.  Terri (her nurse) and I spoke several times during the day, and it seemed like she was doing okay, considering the circumstances.  

He returned my call at 4:45pm.  I told him about her cough and I said that I thought her cough sounded "specific."  Keep in mind that her coughs don't sound like a non-trached kid's cough.  I was thinking that if she weren't trached and she coughed, someone would probably say, "oh, that sounds like _____."  I told him that she would cough several times quickly and then wouldn't be able to stop exhaling.  Her face would get all red/blue and she sometimes vomits after (which she hasn't done in ages, thankfully).  

He said, "Oh, that sounds like Pertussis (whooping cough).  She's up to date on her vaccinations, right?"  Yep.  I guess her immune system was weak because she's been sick for so long.  And not everyone vaccinates their children.  Which is probably okay for healthy kids - but it could be awful for kids like Harlie.  So, he called in a prescription for Tobramycin nebs (two times a day for 28 days).  

I called the pharmacy a little while after to make sure that it was called in, and see when it would be ready.  And can you believe they said they didn't have any in stock?  Grrr!  So, I asked him to please find it somewhere.  About 30 minutes later he called to say he found one box at another pharmacy.  Great!  

So now I feel terrible about Brodie being on her lap just the other day!  I hope she doesn't get it!  

Saturday

Harlie felt better all day, which we were happy about.  It seemed that the Toby nebs were definitely helping.  She didn't really have any coughing fits that day.  But that night, she was miserable again.  She had low sats, a low grade fever, and she was really tired.  We were supposed to go to a friend's surprise birthday party but our nurse had to cancel.  So, we couldn't go.  

So, that was the week.  Just a boring, old ordinary week.  I have a ton more to blog and part of what I asked for Mother's Day was to have some time to write.  So, hopefully you'll see several new posts.

Hope your week was good!  Thanks for reading!

~Christy

Quick updates

I have so much to tell you - but life is not letting me stay in front of my computer!  Here's a snippet of what's going on...

Fundraiser Update

Wow!  Can't wait to share more details.  There are so many good people around us and I am being overwhelmed every day by their generosity and support!  I will do a post in the next few days highlighting the raffle items and some other important stuff.  Stay tuned!

Boston

I spoke with some people from Boston Children's Hospital today.  I got a tentative schedule of pre-op stuff.  We have appointments July 24th through the 26th or 27th.  She needs to confirm a couple of more things before she gives me the okay to book the plane tickets.  I think the only thing that's questionable right now is if we have any appointments on the 27th.  Which, I really hope we don't.  Four days of pre-op appointments seems really, really overwhelming and exhausting.  Heck, if it takes four days for the pre-op stuff, what the hell is the surgery going to be like?!

She also confirmed the surgery date for August 24th.  The surgery will take 10+ hours, which is terrifying.  Makes my stomach turn just thinking about it.

Sadly, I haven't been able to tell Tom any of that yet.  We barely saw each other tonight.  Murphy had an art class and then Cub Scouts and Harlie had a Daisy meeting (which, she couldn't even attend because she's freaking sick again, or sick-er than usual).  The moms had a fundraiser meeting so I went and left Harlie at home with Brandy.  Once we all got home the big news around here was that Cooper went poo poo in the potty!  Halle-freaking-lujah!  He was so darn proud of himself, it was the cutest thing ever.  We have been working with him forever (okay, about 10 months) and I had true fears that he wasn't going to be able to go to preschool in the fall because he wasn't potty trained.  So, that news trumped crappy surgical stuff that we don't want to talk about anyway.

Harlie

So, I really don't know what's going on with her.  She's basically been dealing with whatever she's got since the beginning of April.  She's had some better/worse days, but the one thing that's been consistent is that she's been unable to wear her cap (the thing that closes the trach and allows her to breathe through her mouth and nose).  This is bad because she knows she can't talk as well without it, so she doesn't even try most times.  She's also had a few fevers (which is very out of character for her).  I had to pick her up early from school today and she slept most of the afternoon (again, VERY out of character for her).  So, I called her pediatrician.  She said that she wants her to see her pulmonologist tomorrow to get a pulmonary function test and an x-ray.  So, we have that appointment at 9:30am.

I have so much more to tell you, but am falling asleep while trying to type this.  I'll post more later...

Thank you so much!
~Christy

We Heart Harlie Fundraiser

I have some exciting news to share!  Oh, but I don't even know where to start...

First of all, I'm feeling MUCH better now.  I had to go on a second med (Prednisone) to kick the lung thing I have/had.  It took a few days, but I am now able to "work" each day without wanting to pass out.  Yay!  My employers have a terrible sick day policy - I get NONE.  And because I was feeling so incredibly crappy - I could not blog about this exciting event coming up.

Harlie's Girl Scout troop (#5091) and leader (Lynda) is organizing a cardio/strength training fundraiser (We Heart Harlie) for Harlie.  The main goal is to raise money for her third jaw reconstruction scheduled for August 24th at Boston Children's Hospital.

The event will be held at Glen Allen Elementary School on May 19th, 8:30-10:30am.

There will be some adult fitness classes (including Adrenaline, which is super exciting since that is my favorite class EVER) and there will be a fitness class for kids ages 5 and up.  Lynda is also a group fitness instructor at the Shady Grove Y, so she will be teaching a class, too.  Be prepared though, she'll kick your butt!  But if you don't want to workout - you can just come to have fun and show your support.  There is no charge for the classes - but you can purchase raffle tickets for chances to win some awesome prizes.

They are working on that now (the raffle).  So, if you - or someone  you know - has a service or product that you/they would like to donate to the cause, that would be AWESOME and we would be so, so grateful.  Just let me know or contact Lynda directly at Lyndareider@yahoo.com.  We've already gotten some great products/services that I am so excited about!  More about that in a post to come.  I will provide a link to the businesses in a future post just in case anyone is interested.

I don't particularly care to talk about the financial side of raising a child who is medically fragile.  So, I don't.  However, I feel somewhat compelled to sort of explain some things since some pretty fantastic people are about to donate their hard-earned money for our daughter.  So, here's the gist...

We will be traveling to Boston, Massachusetts in August for surgery.  We will also go in July for a bunch of pre-op stuff.  After she is discharged after surgery, she will return for many more post-op appointments, and that's if things go well.  Jet Blue flies direct from Richmond to Boston, and is usually not super expensive.

Staying with a child who is hospitalized is not cheap.  Every meal, drink, parking expense, cab ride, etc. comes out of pocket.  From what I understand, there is not a Ronald McDonald House available for us to stay in (the one there is only for cancer patients) but there might be another place similar, and we'll work on all that in the months to come.

Insurance-wise, we will be going "out of network" which will cost us thousands more out of pocket.  Harlie also has Virginia Medicaid, which usually takes care of whatever insurance will not cover.  However, Boston Children's Hospital does not accept Virginia Medicaid.  I am still working on our options and am hopeful we can come to some sort of agreement (or that I can convince them to enroll in Virginia Medicaid for us), so we don't have to go in blindly without any idea of the debt we are about to incur.

One thing I want understood is that we are going forward regardless.  And we are willing to accept whatever costs/debt, etc. will come our way to get Harlie the best care and chances at having the best life possible.  It's as simple as that.

Having a fundraiser for your daughter feels awkward to say the least.  I feel like that just needs to be said.  I would give anything to have a child who did not require 28 surgeries in her first 5 and a half years.  That is not the kind of life I wanted for my child (heck, for any child!).  But, she is worth it!  And we are so grateful to be surrounded by wonderful people who love us, love her and want to help in any way they can.  We are so blessed in so many ways.  And during the bad days and rough patches we experience, I remember that and it keeps me sane.  And from drinking myself into oblivion.  ;-)

The flyer with all the information on the fundraiser is in the works and will hopefully be finalized and ready for distribution in the next day or two.  Lynda also created a Facebook page called We Heart Harlie and an Event called We Heart Harlie.  So, if you're on FB, check them out.

I'll post the flyer on here, as well, for those of you not on Facebook.

A lot of thank you's will be forthcoming, of course.  So, you might get sick of reading how thankful I am.  Sorry about that!  But, I can't help it!  I AM so thankful!

Thank you and much love,
Christy xoxo