Updates

Snow. Snow. And evidently, more snow. Talk about unusual weather for Richmond! And I'm over it. Schools were closed today and are closed again tomorrow. Which means no school for Harlie, as well. Bummer. And we're supposed to get even more snow at the end of the week. Ugh.

Well, I guess this just gives her more time to get used to the increased volume in her hearing aid.

Yesterday (Monday) we went to see Ann about Harlie's hearing aid. It was her first appointment since getting her aid on January 4th. I was so proud to tell her that Harlie is now wearing her hearing aid - with no struggle - all her waking hours! WooHoo! She said she was very surprised. She was hoping for an hour or so at a time. I told her that we gave her a week or so of letting her have large breaks. Then we shortened the breaks for a few days. Then we just put the aid back in every single time we saw it out. And we didn't say anything to her about it, we just put it back in. And that worked. Although she can only be but so cooperative. When the wearing of her aid increased, the wearing of her HMEs (heat and moisture exchanger) decreased.

Here's what one looks like on her... (this picture was taken right before her jaw surgery in December).



So, that's been challenging. When she goes too long without wearing an HME she gets all dry and sticky and that means plugging, which is not a good thing. But we just keep putting one back on and hopefully she'll stop fighting that fight soon.

Anyway, back to her hearing appointment, Ann turned up her hearing aid volume by two decibels. I have no idea how that translates. But I do know that I when I put it up to my ear it sounds loud to me. We go again in two weeks. And I think she will test her at that time, too. I'm anxious to get some sort of measurement for comparison. Then again, the more information I have the more I have to think about.

I haven't mentioned her hives in a while. Just a few days ago, I thought I would see what would happen if I didn't give her the allergy med. Unfortunately, by bedtime, they came back full force. She was definitely itchy and uncomfortable. So, we'll just have to stay on the allergy med for longer. I guess every couple of weeks I'll try again.

So, I'll leave you with a picture of Murphy and Cooper from this morning. I can't get over their hair. Well, I guess I should say their cowlicks. I'm looking forward to summer buzz cuts...



Goodnight!
~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

Hives.

So, yesterday Harlie's upper lip was SO swollen. She looked horrible. And just a couple of days ago, her left eye was swollen shut! No exaggerating. Those darn hives!

So, I just couldn't take it anymore and took her to the pediatrician. Not only am I beginning to lose my patience - but I wanted to double check that her swollen lip was caused by hives. I couldn't see any hives, but maybe they were in her mouth??? More stuff I don't really want to learn!

So, he said, yes. It's hives. His son had chronic hives - so he's got a lot of personal experience. Bad for him and his son, great for me and Harlie! So, he took her off Prevacid and put her on a combo of Zantac (which is an antihistamine) and Zyrtec. So, we'll see what happens. Hopefully, they will go away for good and then we can slowly take her off these meds. If after a couple of weeks on these meds, they don't go away, we'll have to do some more looking.

Well, just a quick one for now.

~Christy

Stuff.

I think I might be getting a little worried about a few things.

One - is how darn protective Harlie is getting of herself. Her reaction to any kind of touching (getting dressed/getting undressed, hooking up her feeding, disconnecting her feeding, etc.) is getting ridiculous. The only thing I can think of is that she just doesn't trust us anymore. We have handed her over to complete strangers and she's woken up with her jaw wired shut and in pain. She just doesn't understand what it all means.

The good thing is that she isn't shutting down. Even after we have to struggle to get her pajamas on (for example) she reaches her arms out to be held. And many times it's a struggle to put her down. She wraps her legs around me and will not let go! And she is one strong little girl!!!

Her behavior has changed so much over the last few months. She's NEVER been this clingy. If I could, I'd put her in counseling! I can only assume that we will slowly earn her trust back at some point (if that's even the issue, of course). Until then she will wear us out with all the struggling. She can win some battles - but I have to feed her! And I'm not letting her sleep in her clothes. Call me mean. But, she's just going to have to learn how deal with this stuff. I wish she didn't - but that's the way it is.

Two - She still has HIVES! For crying out loud! We're going on an entire month with hives. I don't get it. It has now been two weeks since she stopped getting her antibiotic (which is what we thought was causing the hives). If they don't go away in the next several days, it's back to the doc and probably to an allergist or something. I've looked at everything she's been exposed to, and there is nothing that I can find that would be doing it. One of Harlie's nurses has been looking into a Latex allergy. That is something that develops over time with lots of exposure to latex. That would be horrible. Seriously. So, please cross your fingers that the hives go away very soon, and we don't have to seek further answers!

Tom and I have a feeling that she's just pissed off in general. Period. We think she's really annoyed that her jaw is wired shut. She just hasn't been her happy self since the surgery. She hates her constant drooling. And add in these stinking hives - she's miserable!

But there is a light! We have a date to get the wires out - February 10th. Nine weeks from her surgery date. Ugh. Can't come fast enough as far as I'm concerned.

Well, that's it for now. More later (of course)!

Take care,
Christy

Exciting News!

Harlie's communication device arrived today!!! I am SO excited!!! And so is Harlie!













She really went crazy over it. It was so great to see her so excited. And its great to be able to post some pictures of her smiling again!



Now we just have to learn to use it. Tom figured out how to change some things in just a few minutes. We recorded a "My name is Harlie" button, which is way cool. I can't wait to see her learn how to use that. And a "I am 3 years old" button. We added a button for Murphy and Cooper. Murphy got a big kick out of that. There is so much more customizing to do. But we'll have to work on it when we can concentrate. Harlie's speech therapist knows this device really well, so she will help me, too. We'll have to learn how to incorporate it into our routine. I worry about that a little. I hope this device is pretty tough. She doesn't understand to be careful. And how do I let her use it without getting her drool all over it? Ugh.

The other exciting thing is that tonight she got her LAST dose of her antibiotic! YAY! Hopefully now her hives can go away for good.

Take care!
~Christy

Hives.

Boy have I been in a funk! But, as I've noticed before, my feelings seem to mirror Harlie's. And I think she's feeling pretty crappy.

On Friday morning she woke up with hives! Ugh.





So, I gave her Benadryl and hoped that the hives would quickly go away. We were thinking that maybe it was the Tylenol with Codeine, since she hasn't had that much and her last dose was given at 1:50am. Which is a real bummer, because that's her pain med. It couldn't be her antibiotic (Keflex), she's been on that since Monday. And she's had it before with no reactions.

At noon, Brandy gave her the antibiotic. At 1:30, she was worse than before. I went and got the report from the night nurse and read, "She awakened crying, and scratching at right ear, and right side of face, and neck, administered Tylenol with Codeine." The Tylenol was given at 1:50am. She had a reaction before the Codeine. Her antibiotic was given at 12am and at 6am. So, that means that she had a reaction to the antibiotic - not the codeine.

So, I took her to the pediatrician. I've never seen hives before, and I just wanted to make sure that we were right - plus - we needed a new prescription for the antibiotic. I wasn't really ready to take her out in public. But she clearly wanted to get out of the house. She signed "let's go" eagerly. When I called her ped they told me just to bring her in whenever I could. When I got there the waiting room was fairly full. It was not fun to carry her through there. Those parents have no idea what's happened to my little girl. I'm sure that she is quite the sight to uneducated eyes. I didn't look at anyone. Luckily, they called us back immediately. The nurse told me that they held a room open for her. How thoughtful!!!

Harlie was not her cooperative self. She wouldn't let the nurse take her temp. She wouldn't let the doctor touch her at all. The only thing she let her do was listen to her heart/lungs. And that was only after the doctor pointed to her stethoscope. I hope that Harlie will trust again. But, I guess it will take some time. And comforting? She doesn't want any. I know that she's had to find ways to cope with her life. But, I just can't help but wonder what kind of personality traits are developing.

Anyway, her doctor didn't really like the look of the incisions under her jaw. So, she can't go off the antibiotic completely. So, she had to prescribe something else (Omnicef). But, it is still in the same category as the one that caused the hives. So, it is possible that the new antibiotic will still cause hives. Even though she's had it before with no reaction. Ugh. My poor sweet girl.

After our trip to the doc and another dose of Benadryl...



This is how she looked this morning (Saturday). Looks promising, right?



I wish. Here's how she looked when we were getting her ready for bed. When I gave her a bath last night, I was thinking that she did not look like a 3 year old. Her body, I mean. Nothing about her body looks like a toddler. She is too thin, too scarred, too grey, too bruised. It kills me.





The bruising you see is from them trying to get a femoral line. I keep telling them that they are done - please don't try. Yet they try anyway and they are never successful and she comes out of the OR bruised all over.



I miss my Harlie. My happy girl. The light is missing from her eyes. She's miserable. And it shows. This recovery is so much harder than it was last time. Honestly, this recovery is the hardest so far. She's always bounced back faster than this. I can't help but wonder if it is because she's getting older, more aware. Or is it that her body is having a harder time, too? I don't even want to think about that. She has smiled a few times. And she's gotten up and walked around a bit. If we could get rid of these hives, I think she would feel so much better.

I was thrilled on Thursday, when I was putting her in bed. She signed "I love you" to me FIRST. I signed "thank you" and "Mommy is so happy." I can't tell you how great that felt. Of course, she hasn't said it since. I keep on telling her, but she just ignores me - or pushes me away. Ahhh, being her mom is so freaking hard!

On a fun note, it snowed here. Like NEVER before!



Murphy was a little excited.









The neighbor's dog...



Murphy trying to walk in it...





And while trying to get everyone in bed, Cooper went into the bathroom while Murphy's bath water was draining. I saw him go in, and ran in there after him. Clearly, I wasn't fast enough. But, in my defense, that little guy is very quick!







He is so Tom! And we so need him! He is such a joy!

Thanks for reading. More later!
~Christy