Sunday, January 31, 2010

Murphy, the Artist.

Friday afternoon, Murphy decided to decorate his room. I'll take part of the blame. I've never decorated his room. Isn't that shameful? Cooper's isn't decorated, either. And trust me, it's not because I don't want to. I would love to! But, until things pick up in the economy, it just can't be a priority right now. So, I suppose Murphy took matters into his own hands. Literally.

He came downstairs and was so excited to show us what he did. We went upstairs and this is what we found (you can click on the pictures for close ups)...



Earlier he had taped these drawings all around his room. He decided to group them all together. They are all monsters. I can't help but wonder if this is some sort of red flag. Or just a five year old boy's vivid imagination?

Ever since Halloween, he has been fascinated and totally obsessed with monsters. Each Tuesday he goes to the library with his class and gets to check out two books. Every single week since October, he has come home with at least one book about Halloween. Even through December and Christmas!

When I went to his class party right before Christmas, they were making gingerbread men. Murphy made his a gingerbread monster. When it snowed the first time, he drew a snowman monster. I haven't been saying too much about it, thinking the phase would end. Okay, hoping the phase would end. Anyway, back to his decorations...

Here's the door to his bedroom...



His light switch...



His clever spider and spider web... I must admit, I'm pretty darn impressed with his imagination and use of materials (that's medical tape, of course).



Over his bed...



A close up of over his bed...



Next to the window...



One in the middle of the wall...



And my most favorite of all...



You have to admit, they are pretty darn cute bats (and spider). All of them are clearly happy and smiling. And I'm very impressed that he didn't feel like he messed up at all. Like, you know when you're writing on a poster board and you know you only have one shot to get what you're writing right, or the whole thing's going to look like crap? Well, he drew exactly what he wanted without messing up. Or at least it appears that way to me. And I got to hand it to him on the bat hanging upside down. He's smiling and the smile is going in the right direction. I think that's pretty darn impressive for five years old. But what do I know?

He used dry erase markers from the easel downstairs. And he returned the markers to their rightful place when he was done decorating. After Tom and I got our laughs out, we told him they were wonderful bats, but please use paper next time. We can't just go writing/drawing on the walls! We have some paint left over, so that's not a problem. But I think I'm going to let them stay. I cannot tell a lie, I like the bats. They're so darn cheery. Even with red eyes!

And I think we got about a foot of snow yesterday. Nuts! Here's Tom and Murphy headed out to get a jump on shoveling. It continued to snow for hours after I took this picture!



Oh, I forgot to add that on Saturday after we tucked him in, we heard some movement in his room. When I peeked in he had put a chair right in front of his doorway. I asked him what he was doing and he said, "trying to make my room into a cave." I see... Okay, then. Goodnight.

Hope you're all nice and warm...

Thanks!
Christy

Friday, January 29, 2010

Preschool Visit

Today we went and visited Harlie's new preschool class. I had to register her at the school anyway, so her teacher said we could bring her in and let her see it and meet some of the kids. Her class is a PEDD (preschool education for the developmentally delayed) class in an elementary school. It is really weird to think of my three year old being in an elementary school. And getting on a bus! I'm actually kind of glad that I'll have to take her and pick her up for a couple of weeks. That will allow me to adjust in stages. Same with her I suppose. But I'm betting it will be an easier adjustment on her then me!

So, we met the school nurse and some of the staff in the office. They were all really nice and welcoming. They already had her paperwork, so that makes me feel like everyone was on the ball. Harlie walked right in the classroom and made herself comfy.

The weird thing is that while we were in the office (and had not seen the classroom yet) Harlie kept on signing "slide." Totally random. She knows what a slide is and, of course, uses the sign appropriately. Like on a playground, or in our backyard. So, Brandy and I looked at each other like "what?" We couldn't see the playground on our way into the office, either. So, it wasn't that she saw it first. So her teacher comes into the office and sees her signing slide and says that they have one in the classroom! Weird!

So, anyway, she played with the other kids well. There were only two of them today. Both boys. One little boy who is younger than her was very interested in how she looked. He got as close as she would let him, and he cocked his head to the side and was really studying her trach. She didn't seem bothered at all. After a few minutes that little boy wanted to touch her. He touched her hair and she "nicely" brushed him away.

But the one thing that was really interesting to me was that every time he touched her, she took her right hand and put it on her HME (heat and moisture exchanger - the filter that goes over her trach). I have NEVER seen her do this. And she did it every single time he touched her arm, back, hair, whatever. And she really didn't seem to be annoyed. In fact, it was almost as if she was being understanding. But I am totally fascinated that she is so aware of her trach and that she was clearly protecting it - or her airway, however she sees it. I guess until she gets more comfortable or trusting of him, she will be a little more protective of herself. Which is great. The last thing we want is for some other kid to grab at her trach and pull it out! But so freaky that she has that sense! I don't think any kids have ever touched her trach in any way. So, it's not like she's pulling from experience. I'm just fascinated!

They had circle time while she was there. And she actually participated! The teacher put on some songs that had hand motions (like the Itsy Bitsy Spider) and she did a lot of the signs/motions. And the best thing was that she was totally smiling! It was so darn cute! I'm sure that a lot of that has to do with the fact that she's wearing her hearing aid (all day I might add).

There is a large white board in the class. And near the bottom - more in their view (the kids I mean) - she has laminated pictures. They are sketches of activities - like washing hands, a playground, food, a potty, etc. And she puts them in order - so the kids can see a schedule of events. So, after circle time, they wash their hands, then they go and eat lunch. They boys followed the routine with no problem. Harlie's therapists (several of them) have tried this with her in the past. So far, it hasn't really worked. But, I'm anxious for her to learn what the schedule is, what it means, and be comforted by a routine. Because I do believe that most kids are comforted by knowing what's going to happen next. And Lord knows she hasn't had a lot of that in her little life.

So when it was time for us to leave, Harlie wouldn't budge. She didn't want any part of it. So, that's a good sign. I'm excited for her. I'm excited for us as a family to see what she can do and how that changes her behavior.

However, it's still going to be hard for me to see her go to school every day. I know she's already gone to preschool, but that was different. Murphy went there. And my friend owns/runs it. So, I knew she was there and it was a comfortable place for me. But this is elementary school! And she's three! And she's going to get on a bus! I know I'll quickly get used to it. But let's face it - she's pretty much been in our care, or Brandy and Jennifer's care her whole life. And a complete stranger will be driving her to/from school. A stranger! But it will be fine. I know it will. Things change and we all have to change with it. And she's probably going to so dig riding in a bus.

Oh! Another good thing is that they actually get out of school 15 minutes before the rest of the school. That way they are not getting run over in the hallway by the bigger kids. So, that's good.

Well, that was our excitement for the day. Oh, and this snow storm headed our way. No flakes yet, though. But we're all pretty excited to see how things look tomorrow morning!

More later!
Christy

Tuesday, January 26, 2010

We have a Plan!

I am so excited! We had a GREAT meeting today. I feel so lucky to have had such a good team. Everyone was so thorough in making Harlie's goals and plan for her education.

She was found eligible for preschool special education through the county (along with continued speech therapy and some physical therapy). Woohoo!

In order to get her the services she needs, a "label" is required. I know this is a sore subject in the special needs community - a lot of parents don't like labels. But I understand the need for them. And it's not like the label can't be changed if the child's needs change. And to me, if the label gets my child what she needs to have the best chance at success, then label away I say!

So, her label is Other Health Impairment. They didn't want to put her under Developmental Delay because they just didn't think that label fit her properly. They said that she's only delayed because of her medical issues (she's spent a lot of time in the hospital - cumulatively about 6 months total) and the chain reactions they have caused. Also, you age out of Developmental Delay at 6 years old. Whereas Other Health Impairment can stay with her as long as she needs services. Makes sense to me.

I just want to highlight something from the meeting. Her speech therapist had to write down Harlie's strengths. She asked, "how can I say stubborn as a strength?" And this is what she came up with:

Harlie is an enthusiastic, social, strong-willed child.

Love it!

Anyway, to get to the exciting part...

They recommended a special education preschool class at an elementary school about 15 minutes from our house. They also recommended that she attend every day, Monday through Friday, from 11am to 2pm. They will provide transportation. So a bus will come to our house to pick her and Brandy up (or Jennifer depending on who is working, or myself for that matter) and they will drop them off back at our house after school.

The class is a small class (but I can't remember right now how many kids are in it) and there is one other little girl who is also hearing impaired. They said that she has started to learn sign as well. I think if I see the two of them signing to each other I will totally melt! There is the teacher and a signing adult in the class.

She will also continue to receive speech therapy twice per week, during school hours. And she will get some physical therapy as well.

And all this structure and education will begin on TUESDAY!!!! Can you believe it??? TUESDAY!!!!

It will take a few weeks to get the transportation set up, so until that happens, I will have to take them and pick them up every day.

Now a quick story about the teacher. My friend Donna's daughter (Alex) just turned 8 in November. She has Angelman Syndrome and receives special education (her blog is on my list to the left). And her teacher when she was in preschool is the same one that will teach Harlie! We both went to Alex's birthday party a few months ago and I got to meet her and loved her! It is obvious that she really cares about the kids that she teaches. I feel so lucky that it worked out the way it did! When they told me that she would be in Katie's class I was thrilled!

The team put a review date to this IEP (Individualized Education Plan) of June 17, 2010, which is the last day of school. They want to review her case again at that time to decide if she needs to attend the extended year program, which will mean she would continue to go to preschool in the summer.

I really can't say enough good things about Harlie's team and the meeting today. I really felt like it was such an energetic group who were all excited about putting Harlie in a position to learn and grow. The meeting took over two hours. And all the excitement of the day has left me feeling completely drained. I'm amazed at the amount of energy it takes to be Harlie's mom! Honestly, I am pooped!!!

Now the challenge (yes, the challenge as if there's only one!) is going to be figuring out how I'm going to manage my day and her additional private therapies (speech and feeding) in coordination with her school schedule. Especially with me having to take them and pick them up every day for the next couple of weeks.

Well, before I go I just have to share a funny Murphy story. Some of you might remember this post from a few months back when I talked about Murphy and T, a girl.

Well, I saw T's mom at the gym this morning and she asked me if it would be okay if Murphy came down to play after school. Today was T's birthday and she was having some friends over. I said Murphy would love to. So, I pick him up from school and before he even says hello to me he exclaims, "I'm going to T's house to play!" I asked him how he knew and he said that T's mom came to have lunch with them today and she told him then. How cute. So, we went to get in the car and as he was getting in he said, "No time for gum, Mommy, I'm too excited!" Um, okay. Didn't ask him if he wanted any gum, but alright.

So we go home for a quick snack before heading down the street to T's house and he says, "Mommy I didn't chase any girls on the playground today. My chasing girls days are over."

Wow. He's only FIVE!!!!

More later! Thanks for reading!
~Christy

Monday, January 25, 2010

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

Friday, January 22, 2010

I'm alive!

I know, I've been a really bad blogger again! Things have been super busy this week. I love saying that. It makes me feel that most of my weeks aren't super busy. heh.

Anyway, I had a bout of some sickness this week. I stayed in bed all day on Monday. I managed to watch plenty of Intervention and Hoarders - which somehow made me feel a little better about myself. Felt marginally better on Tuesday, but took it easy and did pretty much nothing. By Wednesday I actually got dressed and left the house for a while. But, it seemed to take too much out of me, so I went to bed early. And by Thursday, I was back to feeling like myself again. YAY!

It's now Friday and laundry day. Well, pretty much every other day is laundry day around here. But still...

Harlie has speech therapy today. And my goal for today is to write my goals for Harlie for her Eligibility Meeting on Tuesday. I'm super excited about that. I feel like we're waiting for our next phase to begin. And I can't wait! Plus, I have a lot of planning to do (with Harlie's schedule and therapies and such) and it's hard to make plans/appointments if I don't know what her days are going to be like. We've pretty much been on hold since the beginning of December, and I'm ready to move on!

We got the results from her Developmental Testing. It's actually not as bad as I thought it would be. She is developmentally delayed (no surprise there). But I'm okay with it. There were no tears here. I know why and I know she'll catch up - so don't worry about me. But, I'll get more into that in another post.

I just wanted to give you a quick update to let you know all is well here. I'm currently trying to get Harlie out of bed. She is worse than any teenager - guaranteed. I think I will have to video tape the process one day so you can see for yourself. I've already made several attempts and got no where. I will try one more time and if she doesn't get up "willingly" then I will just have to pick her up and put her in the tub. That should do the trick. I know the girl looks sweet and all, but she can be mean as a snake. Trust me!

More later!
Thanks,
Christy

Thursday, January 14, 2010

Developmental Testing

Today Harlie had developmental testing done in preparation for her upcoming Eligibility Meeting for her IEP (Individual Education Plan). Here's the process:

Child Study Meeting: The team meets to discuss what areas Harlie needs testing in (speech, developmental, hearing, physical, etc.)

Testing: They have 65 days (I think) to complete the testing.

Eligibility Meeting: The team meets again (including the people who conducted the tests) and goes over the results. They decide whether she is eligible to receive services (speech therapy, physical therapy, etc.).

IEP Meeting: If deemed eligible for services, the team writes her IEP to help get her on course to achieve the goals that we desire for her.

Today was her developmental testing. And her Eligibility Meeting is on January 26th.

We did all this back in the summer, but in light of her hearing impairment diagnosis, it has to be revised.

So, how'd she do today?

Eh, not so great. It is very clear that she is delayed. That is no secret. There was the teacher (who conducted the test) and a sign language interpreter. Even though Harlie knows a lot of signs, she can't have a "conversation" in sign.

For one of the tests they held up a colored item and asked her what color it was. She didn't understand what they wanted from her. She just kept repeating the sign "color." Harlie needs to be shown what you want, not told. So, that makes the testing difficult. She knows her colors. I don't know if they were looking to see if she knows them, or if she can follow simple instructions and commands. After they showed her what they wanted (by signing the color of the item) she signed "red." Then she held up a green item. Harlie signed "blue." For all I know, Harlie could've been thinking "I want the blue one." But I do KNOW that she knows her colors. So, I'm not worried about that. And after being shown again, she got the rest of the colors right (all 2 of them).

Another test was sorting colored wooden squares by color. She just wanted to play with them. So she lined them up in a row. She had her hearing aid in, but still didn't have a clue what they were asking her to do. Again, she had to be shown. Then she did it okay. But, again, I think what they are looking for is understanding of commands and instruction - without prompting. Which really can't be done with her.

She's only had the hearing aid for less than two weeks. And we have no idea how long she's been hearing impaired. It is very clear how her hearing impairment has prohibited her from learning things that we don't usually have to "teach."

For example, the teacher asked me if she asked Harlie "which one flies?" and showed her a picture of a bird and a car, would she get that? I said no way. I don't think she knows what flying is. We've never taught her that. And a normal kid would take it in and know what flying was and that birds do it and cars don't without being taught that specifically. All those little things you say - directly and indirectly - to or around children that they just learn without you even knowing it's happening - hasn't happened with Harlie. And the sign for "car" and "drive" are the same. So how is she supposed to know that you drive a car??? I don't know. Thinking about it now, maybe I'm underestimating her. I guess the teacher could have flapped her arms and then showed her the picture. I guess I'll be doing that tomorrow to see what Harlie does. Ugh!

Another question was if she imitates facial expressions. I don't think she does. But when you sign "mad" you're supposed to have an angry look on your face and she does that. But then I remembered that we've played in the mirror before and she would try to stick out her tongue a little if I did it first. So, I told them about that. Well, I had to get something out of her bag and wasn't paying close attention to what they were doing. Then I realized that they were trying to get her to stick out her tongue by sticking their tongues out at her (all in fun, of course). Well, she can't stick out her tongue with her jaw wired shut! But, they didn't realize that it was wired. It was very funny. Harlie probably thought they were crazy!

Another test she did was a hide the ball test. She took two plastic cups and put one over a tennis ball. Then she rotated the cups and asked Harlie where the ball was. She got the first one right, I think. But, the interpreter was signing "where's the ball?" at the same time the cups were being moved and Harlie had to look up at her instead of watching the cups. I don't know if that matters. Maybe she still should have been able to see what was going on even without looking directly at the cups. At any rate, after she got it wrong, on the next try she just picked both cups up at the same time.

I have to wonder what goes through her mind sometimes. I hope that most of the time she's thinking these "games" are stupid, have no point and aren't that fun. She would probably rather just line the pieces up in a row and stack them however she pleases.

After the testing was done, the teacher told me that she was going to score the tests and put it all together and mail the results to me. She told me to try to not get upset if the score is really low. We know it's going to be. But because of all the language/communication difficulties, it isn't a true picture of what she really knows. I'm paraphrasing, of course. But I think that was the gist of what she was saying. And I guess it's fine if the score is low. That will help her get the services she needs to be able to understand what is being asked of her in the future.

Regardless of all that, it is still REALLY hard to watch your child not understand what is being asked of her. I know she's smart (and so I'm told by professionals and I hope they aren't lying to me). She just needs to use alternative methods to figure out what you want from her. And even if she figures it out - that doesn't mean that she will want to do it! And she is super stubborn. And she prefers to do everything HER way. Period.

Even after I say all that to myself - it is still REALLY hard to see how behind she is. How much she doesn't know. How far she's got to go to get where she belongs. She needs so much help. And that is very overwhelming for me. I'm no educator. I just hope that we've given her the right tools - a hearing aid, communication device, and therapies - so the education can now happen and be effective. Hopefully, on the 26th, they'll be able to tell me what educational piece they recommend.

Thanks!
~Christy

Tuesday, January 12, 2010

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

Sunday, January 10, 2010

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

Thursday, January 7, 2010

Just a quick one...

to let you know how things are going.

Harlie is wearing her hearing aid VERY reluctantly. If she sees me coming with it, she immediately covers her ear with her hand. And then all of a sudden she turns into an octopus and has more hands than I do and it is a major scuffle to put it in. She's worn it for two 45-minute sessions (in two days) and she did wear it for our whole speech therapy session on Wednesday (which is a little less than an hour). The rest of the times have probably been for less than 15 minutes each.

We put it in for dinner tonight so she could "join" in on things. I usually give her a toy that will keep her busy - like Mr. Potato Head or some building blocks - since she can't eat or anything. Murphy talked the ENTIRE time. I almost wished I had a hearing aid I could take out! So, I couldn't blame her one bit when she ripped it out. Seriously, I don't know how that kid gets enough oxygen when he talks like that!!! God love him!

Plus, with Cooper's screaming and carrying on - that's got to hurt! I was thinking that she would like to wear it for her favorite movies. But, even when I turn the volume down to a respectable level - she still takes it out within a few minutes.

I guess this will be a long process.

Now I feel even better about a decision I made over the weekend. Tom was out of town (more about that later) and I realized there was no way I could keep up with Harlie's potty training. She pees every 30 minutes and to get her on the potty is a struggle. I decided that there are only so many battles we can fight. She must think I am the meanest mom ever. And I hate fighting her all the time. And when it comes to the potty - she's going to win. So there. I'm done. I've thrown in the towel! When she's ready, she'll let me know.

And do you know that very day I stopped putting her on the potty she told me she wanted to go! That stinker. She's asked several times since then. So, I'm sure without the pressure from me, she'll probably be potty trained in no time. Maybe this will finally get me to learn that I cannot pressure her into anything. Somehow I need to figure out a way to make her think it's her idea!

Harlie had her private speech therapy on Wednesday. Her therapist taught me some more things about her communication device. Adding that into her day is another long process. And one that will have to start a little at a time. Tom and I uploaded some pictures of the characters of her favorite movies (Ice Age, Finding Nemo, Curious George, etc.). So, she now knows how to ask for a specific movie on the device. That took no time at all. She also knows how to ask for bubbles. We also uploaded a picture of her, so that when she wants to say "I" it is a picture of herself. Now we need to upload pictures of her favorite books and toys so she can learn to ask for those.

After speech therapy I took her to get her haircut. I was a little worried because she has gotten so incredibly protective of her body. But can you believe that she sat there like she's done it a hundred times and was good as gold?! Seriously, she could not have been any better behaved! I wish I had my camera, but I forgot it. And I still haven't taken a picture of her new haircut. I'll do that soon and post it. She just cut some length off - it was way too long. And it was constantly getting in the way of her trach, which got pretty gross after a while. It had to go!

Well, Tom was out of town for his Grandfather's funeral. He passed away on December 30th. He was 85 years old. Tom's Grandmother passed away last December and ever since he has missed her so much. He had a stroke a few months ago and he said he wanted to be with his wife. So, Tom went back to PA for a few days for his funeral.

This is when I hate that our life is NOT normal. We can't just put the kids in the car and go. So, for many reasons, we stayed here and Tom had to go without us. And I hate that I couldn't be a supportive wife. But, Tom said that his grandfather is where he wanted to be, so that helps.

Today we have speech therapy at the school. So, that's it for now. More Later!

Take care,
Christy

Monday, January 4, 2010

Life is On!

Today was a busy day. It was Murphy's first day back at school. YAY! And then Harlie had speech therapy and physical therapy at the school. Her therapy ends right as school lets out, so we just hang out for a few minutes and wait for him. Then we went to Harlie's appointment to get her hearing aid. YAY!

Here she is playing in the testing booth (although she didn't have to be tested today).



Anne said that she was happy she was playing in there. She wants her to be comfortable and not afraid when she goes there. Since we'll be there a lot until we get her hearing aid just right. In fact, our next appointment is in two weeks. She'll be tested then.

It was a struggle to get the hearing aid on. Harlie has become extremely sensitive and anxious when she is touched anywhere around her head. She used to be so good about us doing whatever to her hair. Now it is a major struggle to brush it. Just putting on or taking off her bib is upsetting to her. Luckily, she recovers quickly, but the fight is no fun. I suppose it will take some time before she is less fearful and more trusting again.

So, here it is...



The aid has a string that is clipped to her shirt so that if she takes it out, we won't lose it. The clear soft plastic piece that goes into her canal was supposed to be glittery, but I think she said that it was too small for them to put it in there - or something like that. Harlie has an extremely small ear canal. The aid doesn't have an on/off switch. It turns on when the battery door is closed. So, when it isn't in her ear, the battery door has to be open to conserve the battery.

Anne said that if we can get her to wear it for 15 minutes at a time, that would be great. Ugh. Can't i just put it on in the morning and then take it off at night? Geez.

But, I gotta tell you - when she wears it - it's pretty darn amazing. After the first fitting, she was quite upset and was on my lap facing me. Anne was behind her and clapped. Harlie's eyes got wide and she looked at me like "what was that?" and she turned around to see where the sound came from. When I got her home I put her aid on (Anne told me not to have her wear it in the car). She was playing at the table - not looking at me. I called her name - and she turned to look at me!!!!!! Holy cow!!! So, with this way excited face, I just said "hi!" Then she looked away. She must think I'm the strangest person on the planet. But how cool is it that I said her name and she heard me - and responded!!!!! Oh the possibilities!!!

So, this is the bag that her hearing aid came in.



What a fabulous slogan!!! And, I agree - Life is On now!

Take care!
~Christy

Sunday, January 3, 2010

Excited About...

I know I should write something more emotional and heartfelt about the passing of 2009 and all the challenges and HOPE that 2010 brings...

But I don't feel like it right now. For now, I just want to tell you what I'm excited about.

One - Harlie's hearing aid! Talk about hope!!!! And HUGE potential!!!!! I'm so excited about all the things that could be better with a hearing aid that works for her - and allows her to hear so much more of her world. Our appointment is MONDAY!!! Woohoo!!!

Two - I'm excited about her communication device and all that it could add to her world as well. I'm excited about being able to have a "conversation" with her. And I'm excited for others to be able to communicate with her, too!

Three - I'm excited to get her jaw unwired. Can you believe that it has already been over 3 weeks since her surgery? So, just 5 weeks to go and the wires come out!

Four...



So... What are you excited about???