Sick Week

You know, I really, really wish I didn't have so much to blog about.

So, what's new?

Cooper was sick on Monday and Tuesday.  On Sunday night he came into our room and I woke up to hear him struggling to breathe.  He had stridor (sounds like they are struggling to inhale, and silent when they exhale) and couldn't talk.  He coughed - and it was definitely croup.  His airway was swollen, which is why they make that barky cough sound and stridor.  He slept with us the rest of the night.  He stayed home Monday and Tuesday.

It snowed on Wednesday.  I got up at 4am to let the dog out and it was raining.  I woke up at 6:30am to the phone ringing.  Then Tom yelled up that it was the school canceling for the day.  What?  I looked outside and it was snowing and the ground was already covered.  Geez!  Now for those of you that don't know, Richmond is totally wimpy in the snow.  And it was wet, slushy, slippery snow.  It was like a blizzard.  The boys were so excited.  They were dressed in snow gear by 7:30am!  But, their outside fun didn't last long.  The wind was blowing so hard that it was hard to see - the snow was blowing sideways.

Of course everyone in my area was totally ecstatic on Facebook about it being a stupid, freaking snow day.  I guess I would agree if I had all healthy children.  But, I don't.  Especially right now.  It kills me that Harlie has to miss out on stuff that she probably would love to do, if she were healthy.  Ugh.  And snow days when Harlie is on oxygen piss me off.  Plus, snow is such hard work!  I have to help get the boys dressed in all their snow gear, boots and gloves.  They go outside for five minutes and they come back in, get snow everywhere, need help getting their wet clothes off and they run off - leaving the laundry room a total wet mess.  Then you have to dry what was wet, because they are going to want to go out again as soon as I sit down.

I probably sound a bit bitter.  But, it's just that I'm tired.  I was already tired - both mentally and physically (probably more drained than tired, really) from the past week.  So, add a snow day, and I'm about done.  No happiness here.  Nope.

Luckily, after two outings, Cooper exclaimed that he "was never going outside again!"  So, that kinda made me happy.  ;-)

By Wednesday night, Harlie was running around looking quite happy.  I asked her if she wanted to go to school and she said, "No!"  Then she said, "No, I don't want to go to school!"  Granted, it was not nearly as clear as that - however, I could totally tell that's what she was saying.  I promise!  But, she was being funny when she said it - so I didn't take her so seriously.  She was definitely going to school on Thursday.

Thursday, there was a two-hour delay.  Which, actually worked out okay, except for the fact that Cooper was only at school for two hours.  That didn't give me much of a window for a little bit of freedom.  That was my first day without anyone in the house in what feels like forever (maybe three weeks?).

But, I can tell you that it felt FANTASTIC to put Harlie on the bus!  Even though she said didn't want to go, she was the first to get out the house and she hurried down the driveway.  I sent a small oxygen tank with them, just in case.  She had a great day, and they said she was happy to be back at school again (it had been over two weeks since she had been there).

I got some laundry started at home and then went to the gym to run a few miles on the treadmill.  My running time has been about nothing the past few weeks, so it felt good to get a quick one in.  I was feeling crappy all week (my spirits, I mean).  Then one short run had me feeling more like myself again!

Then I went and picked up Cooper from school.  Then my Mom came over to sit with him while I went to a training thing at Harlie's school for her communication device.  A Prentke Romich rep came to the school to train Harlie's teacher, speech therapist and instructional assistant on the device.  I found it to be very helpful and I think they did, too.  The device can be overwhelming when you look at it.  They all left understanding it so much better, which will help them enforce her to use it more during the day.  The more she uses it, the more she can express what's going on in her head.

One day, Prentke Romich's FB page posted something about a Wacky Wednesday contest of some sort, where you send in the funny things your kids have said using a communication device.  One of the comments was from a mom who said her child said, "I want ice cream, color brown."  I thought that was so cute.  And I live for the day when she can tell me what she thinks or wants (without me anticipating what she's going to say).

Anyway, the rep also brought two new devices.  I noticed on the website recently that they are no longer making the Vantage Lite (the one we have).  I didn't realize it was because they came out with something better!  They are now using the tablet technology, which makes for a much lighter, smaller device.  And lighter means that she might be able to carry it herself, which means she might just take more of an ownership in it and use it more.  I have hope!

The Accent 700 only weighs 1.95 pounds, and is smaller than an iPad.  The Accent 1000 weighs 2.95 pounds and is bigger than an iPad.  The language and icons are the same.  So, I could back up our current device and then just load it in the new one and nothing will really change as far as how Harlie uses it.  The buttons are all in the same place, and mean the same thing.  The only negative is that the smaller one clearly has smaller buttons.  There are still 84 buttons per screen, but the screen is so much smaller.  I'm just a little worried that they are too small.  But, the rep said he would bring them both to a speech therapy appointment and let Harlie test them both out to see how she does.  Then we can order one for her!  So, that's exciting.

That night we got a care package addressed to Harlie from the children's department of Saxon Shoes.  Can you believe that?  They all signed a card and sent a bunch of stuff, like a LaLa Loopsy girl (which she LOVES), a coloring book, crayons, lip gloss, socks, shoe string charms, etc.  How incredibly sweet and thoughtful! I know our friend, Aline, had to have been behind that.  Thank you so much to Aline and all the wonderful employees there!  We are so grateful for your support!

Friday morning I sent Harlie off to school again.  And I sent the oxygen tank again, too, just in case.  Well, it was a good thing because by 10am she was back on it.  Grrrr!  What is going on with her???  Terri said she was having to suction her every few minutes!  Ugh!  That is NEVER a good sign.  I have more to tell you about this day - but I will have to make that it's own post because this one would be way too long.  Soon.

Anyway, Friday morning also brought us a sick Murphy.  He so rarely gets sick (thank goodness!).  I think he's only missed one day of school so far (and that was for when we went to Pennsylvania).  He had a very sore throat and a fever.  Unfortunately, Fridays are my busiest days, so luckily my Mom was available to come hang out with him while I ran around.  We are almost done reading the book Wonder and we just read the part where his school watches The Sound of Music.  He asked me what that was so I pulled up some song scenes on you tube.  I love that movie.  So, I asked my Mom if she had a copy (and of course she did!) so she brought that with her for them to watch.  As I came and went from running around, Murphy appeared to be captivated.  He said he really liked it.

Despite Harlie's increased coughing and suctioning, I still took her to speech therapy.  She hasn't been in weeks.  She did great, despite everything.  I don't think she considers it work.  Which is great.  Amy is great with her.  I have more I could write about this, too, but again, I'll have to save it for another post.

After that we were all home for the day.  And then Harlie's hearing impaired (HI) private teacher/therapist came to work with her, too.  All the while, her coughing and suctioning needs were increasing.  UGH!  Seriously, when is she going to be well????  Poor Terri couldn't even eat her lunch because she was suctioning so much.  Maybe she lost her appetite.  Can't blame her, really.  Every cough produces secretions.  And they have to go somewhere.  When she's sick like this, it's just plain disgusting, as my friend Susan does a great job of writing about in her most recent post.

It's so incredibly frustrating that she's sick again.  Maybe I rushed her back too soon.  I don't know.  Trying to make sound decisions for her with limited information is completely wearing me out.  I'm back to feeling like no one can help us with her medically.  And that's such a sucky feeling!  I was talking to Susan about it earlier in the week.  I told her that I think I might have a vague understanding of what caregiver burnout must feel like.  For example, putting Harlie to bed requires ten steps that aren't required when putting the boys to bed.

I have to:

1. Change her trach ties (or trach depending on the night)
2. Put special paste around her g-tube (both morning and night)
3. Put lotion on all her scars (she asks for it for her leg, it must feel tight or something) - she has a lot of scars, too!
4. Put peroxide and bacitracin on her surgery site for her BAHA (both morning and night)
5. Put drops in her ear (she's woken up with it being bloody three mornings in a row)
6. Put her pulse ox probe on her toe and turn pulse ox on
7. Turn on her air compressor, oxygen concentrator and humidifier through her trach collar and hook her up
8. Give her night medication and water through g-tube
9. Repeatedly suction while doing all the other stuff (especially when she's sick)
10. Clean her hearing aid with an alcohol swab

And that's just to get her in bed.  That doesn't count when I have to get up throughout the night to empty the condensation from her circuit or suction her.  The reason why I feel like I might have a vague understanding of caregiver burnout is because by the time I take out her hearing aid (the last thing I do, because I read to her and tell her I love her when she has it in) I am DONE.  And when it comes to opening the drawer and taking out that alcohol swab and cleaning her aid, it feels like someone just told me I have to walk to the nearest shopping mall.  While carrying my car.  The "little" stuff just doesn't feel so little anymore.  Everything feels so big.  And taxing.

Friday night she coughed all night long.  The entire night.  We still have to use a baby monitor so we can hear her when she needs us (and hear the alarms, too).  So, when she coughs - we hear it.

Then at 4am, Murphy comes in our room and says, "Mommy!  I feel like I'm going to throw up!"  So, of course I yell, "Well get to the bathroom then!"  And so he ran, and luckily, he made it.  I, being an awesome mom, tossed him a washcloth from afar to clean his own face.  No, not really.  I wiped his face.  Reluctantly.  And then washed the skin off my hands.  NO GI BUG FOR ME, PLEASE!

I went downstairs and got him a throw up bowl, a Gatorade and some Tylenol (he had a fever).  And then I put him back to bed.  He slept the rest of the morning.

But, it was a long night.  Tom and I were absolutely miserable.  This house has had a sick person in it for too long.  Something's got to give.  Oh, and I forgot to mention that ever since Harlie's ER and hospital stay more than a week ago now, she has had several accidents per day.  I don't know what is going on with her.  Luckily, no sign of blood.  But, something isn't right with all these accidents.  She is back in pull ups again, and I'm trying to be patient but it is getting super annoying.  Clearly, I need to make a GI appointment.  Which, I have decided to call one at Children's National Medical Center in DC.  I have heard from several people that their GI department has stepped it up in recent years.  And I just can't take the chance of having a repeat of our last experience.  No way.  The fact that I would rather drive to DC proves it.

So, it's now Saturday and I was supposed to meet some friends for a six mile run this morning.  But, to be honest, I was not feeling well.  Plus, I was so tired from our sleepless night.  So, I skipped it this morning.  Which was a good thing because Murphy got more sick.  He was crying because his throat hurt so much.  I thought maybe he had strep.  So, I was going to take him to the doctor.  I told him to go upstairs and get dressed.  While he was sitting at the top of the stairs getting dressed (I don't know why he likes to get dressed there!!) he threw up.  All down the stairs.  Thankfully, our stairs are hardwood instead of carpet.  But, oh what a mess!  The poor guy was crying and I couldn't even get to him.  And he had thrown up all over himself and his shoes.  Ugh.  I went into the kitchen (Brandy was working) and we had to laugh.  I felt bad laughing.  Trust me - I wasn't laughing at Murphy, just at the whole situation.

So, we got that all cleaned up and got Murphy all changed and washed.  And then we went to the doctor with our throw up bowl.  The office was super busy - seems this winter has been hard on a lot of people.  He doesn't have strep.  So, she gave us a script for Zofran.  And he hasn't vomited since.  But, he's been miserable!!  He hasn't said a word all day.  And his fever this afternoon was 103.9!  I feel so bad for him.

Harlie's coughing lasted all day long.  Except for a brief period when she fell asleep on the couch.

Harlie.  Miserable.

Murphy.  Miserable.

Them and the dog (who wasn't miserable).

She must have felt sorry for Murphy, too, because she let him have her spot on the couch and her blanket and pillow.  She can be sweet when she wants to be.

Well, this post has been far too long.  As has the week.  My fingers are crossed that things will start looking up soon.  Real soon.  Because I think I'm hanging by a thread over here.

Thanks for reading and thanks for all your love!
Christy xo

Updates

Yes, I've been a bad blogger again. Sorry! I don't know where the time goes!

Just some quick updates since it is already so late...

Harlie is doing pretty well drinking from a sippy cup. But, if it isn't one thing, it's another. And while she is pretty cooperative and willing to drink - it seems her belly is having a hard time. Today she drank 5 ounces without a problem. Then she threw up 4 ounces. I'm sure that's hard to visualize. But, trust me when I say that 4 ounces is A LOT to throw up. I think it is the most I have ever seen from her. Ever. And that is saying a lot considering I've seen her vomit an insane amount of times. Multiple times per day for years adds up quick.

Anyway, I simply cannot describe how frustrating and disappointing it is to sit there and work so hard to get that food in, just to have it all be for nothing. And there is nothing I can do about it. If only the GI docs could figure out what's wrong...

Now, I'm no doc, but I can tell you that it is clearly a volume issue. Her belly just can't handle the volume in a short amount of time. Her feeding sessions are 30 minutes long. Plenty of time for a normal kid to eat a meal/drink a bottle. Heck, Cooper would scarf down an 8 ounce bottle in just a few minutes. I don't think Harlie has EVER had a feeding that large.

We've been working on trying to get her to tolerate a larger feeding or a quicker feeding rate for her whole life. Three and a half years and we are STILL struggling with volume issues! And now that she can drink by mouth, her belly isn't going to cooperate. Seriously?

Anyway, Harlie is in a big girl bed now! She is loving it! I think she is so much more comfortable. It has to feel better for her back than the hard crib mattress she was STILL sleeping on!!!! Ugh. Anyway, I will post pictures soon. It is still a work in progress as Tom still has to make the headboard. I think it is going to be so cute!

And Tom's little sister, Amanda, was in a car accident yesterday (Sunday). She broke her back (L1, I think) and is in the hospital in PA. We are all very thankful that she's okay. She got her brace today and will wear it (depending on how she heals) for four to six MONTHS! So far it has been a bit of a struggle finding the right pain meds for her. But hopefully this third one will do the trick so she can get some rest tonight and some relief tomorrow. Her recovery is not going to be easy. So, please send her some good, healing thoughts.

Well, I hope you all had a nice Easter. The Easter Bunny was very thoughtful (and smart) and brought Harlie her very own helmet. I guess word travels fast. I think she might have to wear it all the time, though. Today she was stepping down from a very high curb (something she normally would never do without help - I guess she was feeling brave and confident) and almost did a face plant. I stopped to watch her go down, but was not close enough to grab her. Luckily, Jennifer was there, and with her hands full, she still managed to catch the back of Harlie's shirt to stop her from hitting the pavement. It was a close one! And a very impressive save. Thanks Jennifer!

Oh, and another thing... Harlie had a hearing appointment today. She was tested again to see if she could hear any of those low frequency sounds. But, her breathing was so loud today, she said she didn't know if Harlie could hear it anyway. So, we'll just keep trying and maybe one day we'll catch her when her breathing isn't so loud and maybe then we'll get a really good idea of how low she can hear.

We did get another mold made of her ear, though. We have been having a heck of a time keeping her aid in place. It just won't stay secure in her ear canal. Her ear canal is just so darn tiny! So, hopefully they'll be able to get this next one to fit better.

Okay, NOW I'm done.

Take care!
~Christy

Preparing for the Eligibility Meeting

Well, tomorrow is the BIG day... Harlie's eligibility meeting (and hopefully IEP meeting immediately thereafter).

I spent some time today going over her test results and writing some goals for her. Here are some goals to give you an idea of what I'm talking about:

want her to be able to communicate to us that she's feeling cold, hot, hurt, sick, etc.
want her to answer simple yes/no questions
want her to look at who is talking/signing to her
want her to follow instructions and simple commands without a struggle
want her to be able to walk from car to building unassisted
want her to be able to go up and down a curb unassisted

There are more, but that gives you an idea.

As far as her developmental testing results go... She was evaluated in the following areas (her score is next to each one)

Cognitive - 60
Personal/Social - 81
Adaptive - 73
Gross Motor - 75

A score of 70 or below indicates a delay. The average range is between 85-115. So, clearly, she is delayed. But as I said before, I am okay with these results. I know that they will improve with intervention. And this test does not measure her intelligence. I think we (her parents) and all the professionals that work with her, believe that she is very smart and she is ready to learn.

I'm hoping that they will find her eligible for educational services through the county and that there is a place for her that fits her needs.

In pondering her educational needs, it is so easy to feel so overwhelmed. I feel the weight of the world on my shoulders knowing that she needs so much to achieve "success" academically and socially in school. There is a heck of a negative chain reaction that is caused by a hearing impairment at such a young age. Completely "typical" kids have plenty of issues with fitting in and learning, etc. at school. While many might think that fact will comfort a mom like me - it actually does just the opposite. It makes me afraid that Harlie doesn't stand a chance with all of her challenges!

So, I feel like my work is cut out for me. I've got to help Harlie overcome a lot. And putting her in the right educational environment now is key!!! And I'm not an educationalist. But, I believe that we have a good team and I think they recognize her potential. So, hopefully they have a plan for her and a place that works for her.

It is getting late, but before I go I thought I would give a quick update on some things...

She is doing great wearing her hearing aid! She has worn it virtually non-stop (during her waking hours) for the past three days in a row! We are thrilled! I was, of course, hoping for a MAJOR attitude adjustment overnight. No chance. But - I am completely happy with a few small victories...

Like just yesterday I was talking to Cooper and turned my body away from Harlie and said to him, "Are you ready for night-night"? And when I turned around, Harlie was signing "night-night" to him! She heard me! How fabulous is that?!

Also, so far the hives have been in check and the new medication seems to be working. One day last week I forgot to give her Zyrtec. That medication is given once a day and we give it to her in the morning. By that night a couple of spots of hives started to appear. So, I guess I will wait another week or so, hold the medication again, and see what happens. At least for now, the medication is keeping them away, so that's a good thing.

Despite her continuous feeding schedule (two hours on the feeding pump, two hours off, three times a day and then a 10-hour feeding during the night) she is now officially vomiting again. Luckily - so far - she seems to be able to get it out of her mouth okay. It was pretty scary watching her vomit the first few times. But as with anything, you get used to it. And now it's back to not being that big of a deal. Unfortunately it is happening several times per day. She is so good about it. She tries to catch it in her hand (if there's nothing within reach like a burp cloth or bowl). And if she's standing, she backs her body out of the way so it doesn't get on her clothes. And then she helps clean it up with a rag. And she doesn't cry or get upset in any way. So, it appears that she doesn't feel any discomfort vomiting with her jaw wired shut. So, that's something. And luckily, we have just two and a half weeks to go till the wires come out! Woo Hoo!

Well, that's it for now. I will let you know how the meeting goes tomorrow.

Thanks,
Christy

Tom and some other stuff

Tom is doing well. He is a lot happier now that the dressing is gone. We were able to remove that this morning. Tom's mom and husband came down late Friday night. So, they were a big help. They left this morning.

I made a huge mistake by not getting some help for Friday night. I just didn't think it through. He was out of commission the entire day. And when I tried to feed Harlie her dinner (orally) I had to puree several different things because the first thing I made she wouldn't/couldn't eat. If there's any texture to it at all, she gags and wipes it off her tongue. And since I was in a hurry I probably rushed it and didn't mix it long enough. I don't have this whole pureeing thing down pat yet and I had a huge mess on my hands. And all the kids needed me at the same time, including Tom. After I finally got everyone bathed and in bed (not Tom) I came down stairs and realized that I never ate dinner myself. So I made myself a bowl of vanilla ice cream with some magic shell. Probably not the best pre-run dinner, but I didn't care. It was worth it.

I don't know if he'll be able to go to work tomorrow or not. That will probably be a last minute decision. Here are some pics...

Waiting for surgery...


Just out of surgery...


Just before dressing removal on Sunday...


No more dressing...


We got Murphy's teacher assignment this weekend. I've heard a lot of good things about her, so I'm really happy with who he got. And we have Kindergarten Open House on Thursday. I just can't believe that he will be in school a week from Tuesday! He seems too little! But I guess all parents feel that way. I just know I'm going to be a head case that day. I get all choked up just thinking about it! I guess it's a good thing I'll be very busy that week. Yeah, right. Just that week.

Well, this week brings some good appointments. We see her GI doc to talk about the vomiting (my favorite subject). Today I was doing an oral feeding and she was doing great. She ate a total of 4.5 ounces. Woohoo! Then she promptly vomited 3 of it back up. Ugh. I really can't tell you how much I hate her reflux. "Reflux" - such a tame word for what she's got.

Then we see a nutritionist to see about her new feeding plan. We've been keeping a record of what she eats and how much (we weigh everything - including bibs - before and after a feeding to get an exact amount). I just fed her dinner (orally) and her grand total for the day is 13.56 ounces! Her most yet! And if she hadn't thrown up those 3 ounces it would have been 16!!! Wow! At this point we're winging her tube feedings. So, I will be very happy to get a plan from someone who knows what she's talking about. Now, let's just hope she knows what she's talking about...

As always, more later!
~Christy

Mad, Mad, Mad, I say!

I've officially HAD it with this nonstop, horrible, vomiting! I find myself thinking, "if I have to watch her vomit like that again, I'll (blankety blank)". But, I can't say that because I KNOW that I will have to watch her vomit again. And again. And again. And again! UGH! WHY????

When she vomited as a newborn, I hoped that once she sat up, it would help. Then at 12 months old, she learned to sit up. But the vomiting didn't improve. Then I hoped that walking would help. Well, she walked and vomited some more. In fact, she can walk AND vomit at the exact same time. You try it! I bet it's impossible! That's my girl.

Of course we also tried every formula made (including breastmilk). After all, these are all the clear solutions to a typical child's reflux issues. No such luck.

We also tested out different feeding pump rates, and medicines. Saw doctors and specialists and performed tests. Until last May, when we had no choice but to try surgery. There. Problem solved. Right?

NO!!!! No. No. No. No. No. No. No. And HELL NO!!!

Since August 2008, the vomiting has gotten progressively worse. It's kind of snuck up on me to be honest. It is really amazing how you can get used to something over time. And how I have been able to deny how bad it's gotten.

At this point, I don't know what to do. We've been transitioning her from Peptamen, Jr. (very specialized in that it's already so broken down so her GI system doesn't have to do so much) to Pediatric Compleat (less specialized and more like a blenderized diet, which is our long-term goal, and less broken down so her GI system can begin to learn to function more normally). In the weaning process, we mixed a little of the Compleat with a lot of the Peptamen, Jr. and then over time changed the ratio. It's very hard to tell at this point if her vomiting has gotten worse or not. I simply can't tell anymore.

So, just for kicks, we tried giving her straight Peptamen, Jr. (with NO Compleat in it) just to see if that made a difference. Nope. Still vomiting like no tomorrow.

So, what now? Continue with the weaning? Go back to Peptamen, Jr.? If she's going to vomit anyway, does it make a difference? UGH!

I'm sure you're wondering... "why is she asking me? Geez, woman! Go see a doctor for crying out loud!" Ahhhh, if it were only that easy.

Funny how we think that doctors know everything. Until we find out that they don't! Especially GI docs. Really, the GI system is still so much a mystery. Kind of like Mars. We know it exists, we know a little bit about it. But that's really it.

We've seen them. Several of them, in fact. None of them have been able to tell me anything that I don't already know.

Doc: She has severe reflux.

Me: Wow!

Doc: And delayed gastric motility (her system takes a little longer to digest food).

Me: Ohhh!

Doc: And she will probably outgrow it at some point.

Me: Fascinating! Tell me more!!!

Doc: There are tests.

Me: Well, that's good!

Doc: But they don't really answer any questions. They just cost you a lot in time, effort, comfort - oh and money. But, you've got plenty of all that stuff, so it shouldn't matter.

Me: Great! When can we start?

Doc: Well, it takes months of scheduling. Perhaps you'll have an answer before she gets married.

Me: Will my sweet girl be walking the halls of her high school one day carrying a bowl for her vomit???

Doc: Well, I've had years and years of education and training. I don't know.

Me: Oh, I feel so much better now. Thank you, Doctor!

So, I'm sure you're thinking, "What was it that set her off"? "What got her panties all in a bunch"?

Well, since you asked...

Things have been going so great with feeding lately. I've really been in heaven seeing food go in her mouth, and not come back out (well, not immediately, I mean).

Then yesterday, she decided to start gagging when I put food in her mouth - then, of course, spit it right back out. At first I thought I just had bad placement in her mouth. No, it didn't matter where I put it, she gagged. Now, she has NEVER gagged like that. So, I suctioned her trach thinking she just had too many secretions to handle the food, too. Nope. Didn't matter.

So, now I'm thinking... "What the blankety-blank"?! We take a few steps forward and then a million steps BACK? Oh no, sweetheart. Don't even think about it.

So, today we do another feeding session and Thank God, she swallowed some without gagging. Whew! Because I just can't go back to her not swallowing. I just can't!!! That would be too, too cruel!!! But, then she gagged. And then threw up. A lot. And I mean, A LOT. It just kept coming. It was awful. And I was heartbroken. I am heartbroken.

What happened? She's not sick (that I can tell). And at the beginning of the session, I think she was trying to tell me she wasn't up to it. She had her head down with both hands covering her mouth. Now, I know that's not using her signs, but that's communication at it's finest! But, I didn't listen. I can't always listen to her. If I did she'd probably still be using her walker. After all, I'm her Mom, I'm supposed to make her do things that she needs to do, even if she doesn't want to!

Tomorrow we have feeding therapy at the feeding clinic in the Children's Hospital. I can't wait to see what happens...

Quick Update

Everything is fine here. Although Harlie had a few rough nights of unusual work of breathing and increased suctioning. Usually we go through the whole night without having to suction.

Then she started this coughing thing.

She has these coughing fits that lead to her retching (so far no vomiting). But retching is not good for her newly placed stitches around her esophagus. Plus, it just looks darn uncomfortable for her! I think the coughing is due to her secretions, so I went on ahead and took her in to see her pediatrician. Usually, I would have made her wait it out a few more days - as there is nothing you can do for a cold. But, with surgery less than 2 weeks away, I played it safe.

He agreed that it wasn't worth the risk of her getting worse. So, he put her antibiotics. Usually, I avoid them unless absolutely necessary, but she hasn't been on them in months, so I was okay with it. I don't want to do anything to jeopordize her jaw surgery. Rescheduling that would be a nightmare and would likely mean a delay of months. So, we're not taking any chances.

I finally uploaded some photos. Well, that's about it for now. Thanks for checking in!

Take care,
Christy