Sunday, May 13, 2012

Crazy week

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

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.


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.  

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.  

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. 


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!  


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!


Kristen said...

Christy, Harlie is really talented in the art area! I am impressed! Her fine motor skills are excellent! Her letters are so neat, too! Way to go Harlie!

And Brandy, if you read this: Brodie has the MOST BEAUTIFUL eyes! She is an adorable baby!

Susan said...

Just another boring week with nothing to do....Haha. I'm really sorry that Harlie's been feeling so poorly. It sounds like there has been some good mixed in. Happy Birthday Murphy! And good job Cooper! I also have to say that I'm way impressed with Harlie's cards!