Thursday, September 6, 2012


Things are okay here.  Harlie isn't letting the cast stop her, that's for sure.  She seems more and more energetic each day.  She's definitely still dealing with some pain.  And it's always on her right side behind her ear.  The drooling is awful.  Truly, truly awful.  I don't know how she's going to go to school like this.

Speaking of... I've decided to ask for homebound services for her, until she can go to school again.  She still needs the supplemental oxygen several times a day.  I'm so surprised considering how much she is up and around.  But, we take her off for a little while, and then check her sats to see how she's doing.  If she's hanging around 80, we put her back on.  If she's higher, we give her a little more time and then check her again later.  When we put her to bed tonight (Wednesday night), I was hoping she'd be in the 80s, but she was in the high 70s.  Ugh.  We'll just see how tomorrow goes.

The past few days have been an adjustment for me.  She seems to be adjusting faster than I am!  School started on Tuesday.  I really wanted to walk with Murphy to school.  But, school started for our nurse's kids, too, but they go later than my kids.  So, she can't get here till later.  I was hoping to get Harlie up and walk her down, too.  But, that didn't work out.  In fact, I was upstairs with her when Murphy went outside and Tom took pictures.  Ugh.  I feel like I missed it all.  I know I shouldn't complain.  Heck, I didn't know if I would even be home for the first day.  I should be happy!

But, it was still sad to see all the kids, all dressed and excited for the first day - especially siblings - that were going together - and knowing that Harlie wasn't one of them.  I don't think I'm ever going to be good with the fact that Harlie can't go to school with her brothers.

Cooper will go to preschool four days a week.  But, he doesn't start until next week.  Personally, I think that's insane and just plain cruel to the parents, and the kids.  WTH?  Why couldn't they start at the same time??

So, after Murphy left (on Tuesday), I spent most of the day walking in circles around my house looking at all the stuff that I was supposed to be doing - unpacking, putting away, washing, etc.  I literally did NOTHING.  I had no focus and no energy.  Today (Wednesday) wasn't much better.  But, I did manage to bring down the dirty laundry, sort it and start washing it.  So, that's something.  I just can't seem to start something AND finish it in a reasonable amount of time.  It's not only frustrating, it's terribly inefficient.  At one point I looked around and the soap was on the counter for the dishwasher, but I didn't get to put it IN the dishwasher and start it, the sheets were washed, but were not on the bed, and there were clothes in the washer, but the door wasn't shut.  It all just seemed too hard to do.

For some reason this morning (Wednesday), I wasn't handling Harlie's drooling so well.  I was thinking that maybe I should get her to drink by mouth.  Maybe her seeing the squirt bottle, and knowing that she needs to drink it would make her swallow it.  But she just squeezed some formula in her mouth and then it just sat there.  Ugh.  I couldn't make her swallow it.  I would tell her and she just shook her head no.  I got the feeling that she is scared that it will hurt if she swallows.  Frustrated, I called our feeding therapist.  We've had her since Harlie was just a few months old.  She knows us.  And she knows her stuff.  I left a message, thinking that she was probably with patients and who knew when she'd be able to call me back.  But, it must have been divine intervention - because she just happened to have an opening in her schedule, so she was able to call me right back!

It was so good to talk to her about this.  I brought her up to speed with how she's been doing and what's changed about her mouth.  One thing I forgot to blog about was a conversation we had with Harlie's oral surgeon.  She said that now that Harlie's teeth are aligned, because of her abnormal mouth shape, her back teeth touch before any of her other teeth touch.  So, that means she can't close her mouth.  Maybe I didn't blog about it because I didn't want to think about it.  The chain reaction of that fact is not a good one.  And I don't know what that all means.  Other than more surgery, obviously.  And more challenges in her speech and eating progress.  One of the functions I was hoping to gain was the ability for her to chew food.  I would think chewing would be more difficult with a mouth where the back teeth touch and none of the others do.

Anyway, the bottom line is that everything about her mouth is different than it was prior to surgery.  So, she's going to have to re-learn how to swallow and handle food in her mouth.  Plus, she still has some swelling.  And pain.  She said that if she can't swallow her secretions, then she's not going to be able to swallow a drink, or food.  So I need to give her more time.  I was thinking she was just being stubborn.

She also said that she just had major surgery.  And I had to laugh.  It is sad that she can have a major surgery like that and that I am expecting her to be back to herself (and maybe even improved) so soon.  What's considered serious vs. minor is so skewed in my mind.  You've been home for four days, Harlie, geez, what's your problem?

So, I need to have more patience.  And I need to give her more time.  And I need to get her back into feeding therapy.  She's going to do whatever she can to get us back on her schedule ASAP.  I felt so much better after talking to her.  I don't always know what to do.  And I am so glad that I have some good people in my corner to help me figure this stuff out and make the best decisions we can for Harlie.  And when I'm feeling down about things, I remember people like our feeding therapist, and that reminds me how lucky I am.  We have such a great support network - in every way.  Support in our spirits and support in the technical/medical aspects of raising Harlie.  I just couldn't do it without you all!

I certainly didn't expect immediate results from this surgery.  I promise!  I know it will be months and months (if not a year or more) before we know if this was successful for what we wanted it to accomplish (eating, breathing and speaking).  But, I certainly didn't anticipate an open mouth (that couldn't close) and the inability to swallow.  One could think swallowing should theoretically be easier if her jaw is more aligned, and pulled out of her airway.  But, it's not that easy.  And for future reference, it's never going to be that easy.

I'm trying to keep myself from being too scared of the future and from being disappointed so far.  I guess I just didn't realize we'd be taking 10 steps back.  I'll be okay with that if/when she makes 15 steps forward.

Our feeding therapist gave me some good questions to ask the surgeons about her mouth.  So, I need to get that e-mail out.  One thing he said we needed to do was to make sure that she opens and closes her mouth a lot to keep that bone in her TMJ from over-fusing (which wouldn't allow any movement).  But, we are struggling with that - and have no idea if she's opening it enough (as in actual opening distance vs. quantity of openings) or not.  And with her continued pain, I'm a little scared that some fusion has already started.  I don't know.

But that's one thing that our feeding therapist said she would help me with, too.  She said she'd show me how to get some regular mouth/jaw exercises in her day.

Speaking of exercises and therapy, I need to call her physical therapist, too, and get her back on her schedule.  Even though she's walking around well in the cast, when it comes off, she's going to be weaker in that leg.

So, look at the chain reaction of jaw surgery - decrease in ability to swallow, need to add feeding therapy back in our schedule, decrease in leg strength, need to add physical therapy in our schedule, decrease ability in verbalizations for communication, need to add/increase speech therapy in our schedule, can't attend school and need to add homebound services.

I know she looks great and all that good stuff, but all I'm trying to say is that despite all the positiveness, it's still hard right now.  It's just plain hard.  I want her to be able to talk to me!  I want her to get a break from pain and surgeries!

I try to be as positive as I can every day.  And I have since the day we found out that things were going to be rough for her (May 5, 2004).  But it is a challenge balancing out finding the positive, and being sad about our reality.  I mean, no one can be positive about everything all of the time, right???  But, then again, being sad about it doesn't really do any good, either.  I just wish we could be nearing the end of surgeries for her.  But, it doesn't look that way.  So, every time we go through it, we know it isn't our last.

Okay, it has taken me DAYS to write this stupid post and now I feel like it's all choppy and doesn't flow.  So I need to just end it.  And I really hate to end it with me complaining.  I really hate complaining.  I have so much to be thankful for.  So, please know that I know it will get better in time.

And when Cooper goes to school next week, maybe I can back to running again.  That usually makes me feel better.  Not immediately, of course.  Because usually running hurts while I'm running.  But, afterwards, I feel better.  I am not one of those runners that runs with a big run all energetic and all like, "Oh, look at me and how good I can run!  I'm all bouncy and fast and I'm so good I don't even need water!"  Nope.

I'm more like, "Oh God, it's hot.  It's so freaking hot.  I can do this!  One foot in front of the other.  Great, I'm doing it and feeling good about myself.  Ouch, my back kinda hurts.  Okay, big arms.  Faster arms means faster feet.  Land on my toes.  Keep my knees up.   Look straight ahead.  Chin up.  Think strong.  I can do this.  Beeeeeep!  What?!  It's only been ONE mile?  Are you kidding me????  Shit, it's HOT!  I need more water.  Cars are passing.  Can't walk with cars passing.  Damn!  What's up with this stupid traffic!  Oh, light please turn red, please turn red.  UGH!  I hope I don't pass out."

Then, I finish.  And get home.  And then I'm, "Oh, I am so glad I got that out of the way in the morning before it got too hot.  Whew!  Good run!"

Runners are stupid.  No, not really.  Most of the time, even when I'm cursing for most of the run, there's something that I actually enjoy.  I just don't know what it is exactly.  Do I enjoy hurting myself? I don't think so.  I certainly don't enjoy it in any other fashion.  I guess it's that it IS hard and somehow I do it and feel stronger because of it.  And I just think that if I feel strong physically, that somehow I'll be strong mentally and emotionally.  Because unlike the run, I don't have a choice in my daily life.  I HAVE to be strong for Harlie and for my family.

That's it.  Now I really gotta go and get some sleep.  I hope to have a much more focused post next time.  Thanks for reading!

Much love,
Christy xoxo


Susan said...

Christy, I think it says something about me that I so totally understand not just your post but the state of mind that lead you to write it. We SO need to have a phone conversation.

Drool- OMG do I understand. The 2 weeks of drooling nearly sent me over the edge. Ainsley drooled on my head and in my mouth and all over the floor so we'd step in puddles of it. Yes, lots of people deal with drool all the time, but when you aren't used to just want it to stop already.

Teeth- Ainsley's back teeth touch before her other teeth. She has an underbite and what that means is she can't close her teeth. She can close her lips around them though, even though it takes some effort. I just asked the dentist and he said people can eat with very little contact between the teeth. Harlie will figure this out I know she will.

Eating- After Ainsley's T&A she wouldn't swallow anything, hence the drooling. Food was out of the question. The doctors told me 2 weeks and it was about that long to the day. Harlie will start eating I'm sure.

Steps- Yes the one step forward two steps back is hard but I KNOW Harlie will be okay, it will be harder on you than her. I know it sucks that there are no easy fixes.

It is okay to complain sometimes. What your family is going through is really hard. The natural emotions that go with having a medically complex kid are tough. I've been there. Really, let's talk. XOXO.

Ann said...

"But, then again, being sad about it doesn't really do any good, either."

Christy, it's okay to be sad whether it does any damn good or not. You are entitled to experience a let down after all you have been through the last few weeks.

Hugs and cheers!

Anonymous said...

It sounds like things are better, but you just haven't seen the full extent of it. You have to be exhausted with everything. Give yourself time and I am sure you will get back into the swing of your life. It seems like Harlie is adjusting as well as she can. You guys are so strong, I know that you will take it one day at a time. Hugs for all, Love from Pgh. Sue and Ron