School, nursing, therapy, etc.

I'm at school again with Harlie today.  Terri is sick.  And I don't have a back-up nurse.  Looks like I'm going to have to do something about that...

Our nurse situation has changed.  As is inevitable, I suppose.  I wanted to hold on to the way things were for as long as possible.  But, Jennifer's job changed, so her hours and demands did, too, making her less available to help us.  And Brandy helps out when she can.  And, Harlie's schedule is more demanding, too.

I get a sense of what it's like to be a single mom, dating.  Wanting to screen the dates and make sure it's a relationship worth introducing to the kids.  Except, I can't.  So, every nurse will meet the kids and it's more and more people they are seeing enter our house, leave our house, help take care of Harlie, etc.  Then they ask, "Where's ______?"  Well, really it's only Cooper who is asking.  And he doesn't understand.

So, that's fun.

I had plans today.  And Cooper's home today.  I have two people helping out with him today. And while I am SO thankful to have my little village of people that are always there when I need them (and you know who you are!!) it makes me sad that I can't be there, being his mom, and spending time with him. And that I can't honor my commitments.  And that I have to be so unreliable.

I will say there is something positive about seeing Harlie at school.  Yesterday I saw her pick up her new lunch box and show it to another mom who was waiting for her child.  She didn't know this mom.  She was just showing off her new lunch box, just like every other typical kid does.  When I am here, the kids come up to me all the time, showing me their shirts, lunch boxes, backpacks, necklaces, whatever.  And to see her doing something so typical, well, that's pretty cool.

In the mornings the kids have to write a word and draw a picture in their "doodle diaries."  I sat here and watched several of the kids take their notebooks to the teacher to show her.  I don't know if that's something that she asks them to do or if they just show her when they are particularly proud of that day's work.  Either way, after a few kids did it, I saw Harlie carry over her book and show her teacher.  Then she returned to her desk.  I was wondering if she would come show me, since I'm here.  But, no.  Which is actually a good thing.  She should be showing her teacher and not worrying about whoever is sitting at this desk.

Plus, I get to see how good the kids are with her.  I know that won't last forever.  So I'm going to enjoy it while it lasts.

Yesterday, during recess, she was on the swing and I was pushing her.  A bunch of the girls wanted to push her, too.  Harlie was laughing/humming while swinging.  A little girl heard her and asked what she was doing.  I told her she was happy and she was singing and laughing.  Then Harlie laughed (she does have a funny little laugh, that makes other people laugh, too).  And the little girl looked at me, all surprised and then laughed, too.  Then she told another little girl, "Harlie just laughed!" And then they all started laughing.  It was really, really cute.

So, for those moments, I'm glad to be here.

Anyway, on Friday Harlie had an appointment with the Feeding Clinic.  Even though she is not currently receiving feeding therapy, she still has to check in every six months with the team and nutritionist to be weighed in and make sure she's getting enough calories.

At five years old, she weighs 35 pounds.  That puts her in the 10th to 20th percentile.  Not bad.  But, her height is only 39.5 inches.  That puts her in the less than 3rd percentile.  Cooper, at three, is only an inch or so shorter than her!  It's really quite crazy how tiny she is compared to her classmates.

The doc also put her back on the waiting list to receive feeding therapy.  The waiting list is NINE months long!!!  So, by the time she gets back, she would have taken a whole year off from feeding therapy.  And that's if she is able to go into feeding therapy when her name comes up (depending on jaw surgery and recovery).  At this point, I don't know how I'm going to fit it in her schedule anyway.

Sometimes I think I'm a glutton for punishment.

I found - and added - another speech therapist to work with Harlie once a week.  So, she will now see her school ST (twice per week), Amy (once per week), Becca (once per week) and Delisa (once per week).  But, Delisa will work on her communication device, which no one else is doing.

I'm torn because all of this therapy means time out of school.  And all of it is important.  But, I can't always get therapy out of school hours.  I guess I will do this for this year (since she's repeating kindergarten, anyway).  And next year, we'll just see where we are.

So, now Thursday will really be Therapy Thursday.  She'll see Delisa at 1pm, then we'll rush over to the southside to see Traci (her PT) and then immediately after that, we'll see Becca.  What a long, hard day!

Since she's been sick, she's missed all this therapy for the last three weeks in a row.  And for the past few months, I've been meaning to schedule an appointment for her to see her cardiologist.  It's time for her yearly check-up, and I have a few questions.  Her heart rate has been dipping really low during the night while she's sleeping.  I now have to set her monitor to alarm if it dips to 35 bpm.  If the alarm is set to 40, it will alarm every night.  This alarm setting has slowly gotten lower and lower over time.  Not sure what's up with that.  I'm not too worried since I know that it's because of her heart block (which means sometimes there is a longer pause between beats and the pauses aren't even or consistent).  So, she recovers, and it doesn't stay that low for that long.  At least I don't think it does.

Anyway, I finally called the other day and he only sees patients on Thursday afternoons.  Of course.  So, she'll have to miss another whole day of therapies to see him.  I didn't make the appointment because I wanted to think about how long I'm willing to wait to see him so she can get some therapy in.  That kind of stuff just bugs me.

Well, we are off to the cafeteria for lunch (yes, at 10:30 AM).  So, I must wrap this up.

More later!
~Christy