Cooper

So, as I spoke in an earlier post about my worries, Cooper's preschool issues was on the list.

He just started in this preschool this year - so it's new to him.  His birthday is September 26, and the cut off to be in the three-year old class is September 30, so he just barely made it.  One of the main reasons why I moved him to this preschool is because they have a policy that the kids don't have to be potty trained until age 4.  Great!  No pressure.  OF COURSE he'll be potty trained by 4.  Right?

Anyway, in short, his teacher harped on two things since the beginning of school - 1) He's not potty trained (nor is he ready or willing) and 2) He's "high energy.  REAL high energy."

Well, I didn't mind the first couple of times.  But, come on.  What am I supposed to do about those two things?

One complaint was that he wouldn't sit still for circle time.  What I wanted to say is, "Well maybe you should spice up your circle time."  But I didn't.  I just said, "Well, we don't do circle time at home, so I don't know what to tell you.  That's why he's in preschool."  I told her I had already spoken with his pediatrician who told me - WAY too young to be diagnosed - and you just have to get through these years.  He just turned 3, for crying out loud.

At our teacher/parent conference last week, I briefly explained that our life is... different.  And that I need help teaching him what preschool teaches.  That's why I signed him up for the 3-day program vs. the 2-day program.  He needs the instruction.  He needs the structure.

But by the next week's end, I couldn't take it anymore.  Every day, I heard the same thing.  It got to the point that I dreaded walking into that building.  It was awful.  And most days he would come home in the same pull up that he went to school in (they require pull ups vs. diapers) and it would be soaked!  So, I know they weren't taking him to the potty consistently.  And on Friday she told me that "He was real high energy in music today.  REAL high energy.  And he pooped today, which is fine, but he needs to tell us when he goes."  Yeah, okay.  "Hey, Cooper, did you hear her?  You need to tell her when you go poop, okay?  And while you're at it, go on ahead and tell me, too, okay?  Great.  I'm glad we had this talk."

For real?

This kid is so anti-potty that I don't know what to do.  He asked for a small bag of M&Ms the other day and I told him he could have them if he just sat on the potty - just SAT on it.  Nope.  He said no and walked away from the M&Ms.  And never asked for them again.  Is that normal?

The bottom line is that he has no desire to use the potty.  He cries when we make him sit on it.  Do I keep on making him sit on a regular basis (like before bath, bed, etc.) or am I just making it worse by making him?  Ugh.  I absolutely hate potty training!  And keep in mind that I am spent.  It took two agonizing years to train Harlie.  Granted, we confused her by her surgeries which required her to go back into diapers multiple times.

Anyway, I just decided that I couldn't take it anymore.  And if I felt they way I did about walking into that building - how did he feel staying in it?  So, I called the director and told her my concerns.  And she found another classroom that he would fit into.  One less high energy.  The only negative was that it was a total different schedule of days.  But, oh well, it's worth it if it's a better place for him.  They let me bring him on Wednesday to try it out and see how he did before we made the switch.  And he did great.  And the teachers seem willing and able to handle him.  So, we made the switch.

I want to make it clear that he's not a bad kid.  Just like she told me in the parent/teacher conference a couple of weeks ago - he's very sweet and shares with his friends.  She even described him as "kind."  It kills me that we had to move him.  But he doesn't seem phased in the least.  His teachers said that he's comfortable in the class and they said that he acts just like a typical 3-year old.

So, I feel better.  And hopefully he is happy.  And hopefully things will stay that way.

Thanks!
~Christy

Harlie's Last day of school

Today was Harlie's last day of preschool.  Well, she'll go to summer school for the month of July, and then preschool will officially be over.  Luckily I remembered that I had my camera in my bag when I went to pick them up from school this afternoon.  

Harlie's actual preschool class is only a half-day (the second half, 11am - 2pm).  She goes in at 9:30am to recieve her hearing impaired instruction.  Tomorrow is the last day of school for our county, and it is only a half-day.  Since Harlie's class was the second half, she won't go at all tomorrow, making today her last day.
 

Since Harlie's still recovering in her brace, I drive them to school and pick them up.  I just didn't want her jostled around on the bus.  And speaking of the bus, one of her bus drivers sent Harlie a card the other day, saying that the driver and the aide on the bus miss her.  How sweet!

Brandy and Harlie

After I uploaded those pictures, I went and looked for a picture from the first day of school.

HA!  She's wearing the same shirt!  What are the chances?   It's clearly one of my favorites.  And boy am I so glad I cut her hair!  I think the short cut looks so much better on her.

Brandy suctioning while waiting for the bus.
Notice there's just a few bags to carry around. 

Such a big bus for a little girl. 

Tomorrow is Murphy's last day.  And I must say, I'm not sorry to see first grade end.  It was a tough year for him.  I am very hopeful that second grade will be a better year.  

More later!

~Christy

Getting better.

This week has been so busy!  And I haven't even left the house!  Monday I think I pretty much walked around in a daze.  Some of Tuesday, too.  Okay, okay - I'm still walking around in a bit of a daze.  And boy was I grumpy!  It's been easier the past few days to feel mad than usual.

But, things are getting better.  Harlie is definitely happier.  She was actually giggling today and I have no idea what she found so funny.  But boy, was it CUTE!!!  I would have given anything to hear that sound with no trach.  One day... That girl never ceases to amaze me.  She has every reason to be grumpy herself, but she's not.  So, I need to snap out of it!

Of course, a bunch of visits from friends have really helped my spirits.  When you're in the hospital, it is so easy to become a different person - an advocate, a doctor, a nurse, and a lazy, unhealthy eater.  So, I think I kind of start to forget who I am.  So, when my friends come over and they make me laugh, I start to remember who I am again and I feel better.  So thanks, friends!!!

Mrs. Katie, Harlie's preschool teacher, came over on Tuesday.  It was her first home schooling session and she said it went great.  Harlie was completely cooperative.  I was a little nervous though, because she wasn't quite so happy then.  But, she did great.

My sister came by Tuesday night and brought Harlie a Color Wonder lap pad.  She loved it.

Look at the concentration!

She drew a rainbow.  I should have taken a picture of it.  It was really cute.  Then today she found another use for the markers.

And, she's eating!  But, her belly isn't ready for it.  Boo.  Yesterday she ate several ounces of peaches and several helpings of Pediasure.  All total for the day (Tuesday) she ate just shy of 20 ounces by mouth.  And all seemed okay.  So, this morning, I fed her breakfast - pureed cream of wheat, peaches and Pediasure.  She did awesome and only argued a bit at the beginning and finished it all - over 9 ounces!

But then her belly got hard and swollen so Jennifer hooked up a vent for her g-tube (in the picture above).  And that helped.  But it took a long time for the food to empty from her belly.  I guess she just wasn't ready.  Darn it!

Traci, Harlie's physical therapist came over today.  We've been struggling a bit with some things so I thought Traci might be able to help.  Plus, since the surgeon said that Harlie could bear weight when she was ready, I wanted Traci to tell me what she thought.

Jennifer, Harlie and Traci getting some fresh air.

She had some really good thoughts and she will be back on Friday with a taller walker (Harlie's outgrown hers) and a stander to see if they can help her.  We also worked on the whole car seat issue (wow have there been a lot of discussions about that!) and the potty issue.  Traci thinks that when pain isn't an issue anymore, that Harlie will be able to stand and possibly walk some.  Wow, wouldn't that be great?!

Well, it's late, and I've been up since 3:30am.  Harlie had a bit of a rough start to the day.

Good night and much more later!
~Christy

Updates

I haven't been feeling like my normal self these past few days. I'm tired. And not the kind of tired that you get from getting too little sleep the night before. I'm feeling so "off" that I totally forgot about her hearing appointment this afternoon and I am kicking myself!!! The last time an appointment had to be rescheduled it took two weeks!

Last week Harlie had private speech therapy and feeding therapy and went to school four days (Tuesday through Friday). Getting in her private therapies really complicate my schedule. But I have a hard time saying no to therapies. She needs all she can get.

Feeding Therapy

On Thursday she had her first feeding therapy session since late November. I don't think any of us expected much from her given that the past 9-10 weeks her jaw was wired shut. While she wouldn't let Allison do her mouth exercises - she did surprise us all by swallowing (willingly) about an ounce of thickened apple juice.

If I had been able to blog that night, I would have gone on and on about how great that was and how happy I was about it. And I am. I think. It's just a little complicated.

I'm starting to think that having a medically fragile child is sort of like being on drugs. There are these wonderful "highs" after what I think are huge milestones/achievements. And then after some time, the high goes away, reality sets in, and I crash. I guess that's when I realize that even though she swallowed an ounce, we have oh so incredibly far to go.

Plus, the highs seem to take so much energy. And when the reality of the situation sets in, I'm left feeling spent. And sad. And it probably didn't help that her feeding therapy was exactly one week after she coded. Emotions are weird.

School

School is going great. She is loving it. And her teacher called me on Thursday afternoon just to tell me that she is so pleased with how Harlie is doing. She said that she is transitioning beautifully. She said that everyone loves her. Including a little boy that is a very interested in her. She said that he used to be interested in the other little girl in his class, but now he only has eyes for Harlie. Typical male. Out with the old, in with the new. Boy, it starts young.

She also said that when they opened the door at the end of the day, Harlie "ran" down the hallway towards the bus. Running is a physical goal for Harlie. She more like speed walks than runs. Not really sure why. Probably has something to do with balance and strength. At any rate, giving her a motivation like the bus works for me!

And Brandy said that in the afternoons, when they drop off the last child before Harlie (Harlie is the last stop) she signs "mama" and "home." Awwww! She misses me!

At school, she has a speech therapist (ST) and a hard of hearing (HoH) teacher, in addition to her main teacher. The ST and HoH teacher come in during school hours (11am - 2pm) to work with her. Her HoH teacher started an "Experience Book" for Harlie. It is a book that goes back and forth to school each day. She writes what they worked on that day and what she wants me to work on that night. Then I write what we did that night.

I have to say that I think the book is pure genius.

1) it gives me something specific to focus on with her, which makes my life easier. Often, just finding direction is a major challenge.
2) it will help her learn how to "tell" me about what she did that day (I'm hoping anyway).
3) it will help me learn new signs and keep track of what signs she's learned

Tonight the HoH teacher wanted me to talk about a pig (and there was a pig glued to the page) and some words to associate with a pig - like big, dirty, roll (in the) mud. I did not know the sign for roll, so I looked it up and taught it to her. Ah, a productive night time routine. Gotta love that for multi-tasking!

Her Infection

Tomorrow we go back to Norfolk for her follow-up appointment with her Infectious Disease (ID) doc and her plastic surgeon. Of course one appointment is at 11am and the other is at 4pm. Fabulous. I tried to make them closer together - but ID only sees patients with PICC lines in the am and her plastic surgeon is in surgery all morning long till after 3pm. So, I did the best I could and got the last am appointment and the first pm appointment.

ID will check her "levels" to make sure that the antibiotics are doing the job of killing the infection. As of right now, we are supposed to go back to Norfolk once a week for six weeks. Since that takes all day, I might have them see if they can transfer her ID care to MCV. We'll just have to see what's involved to make that happen (and if there's an ID doc at MCV that will take her on).

I think I will also have them change her dressing while we're there. They have a VAT (vascular access team) that will come and do it for me. Jennifer (her PICU nurse) came and did it for me on Saturday, but that was a nightmare. Tom and I had to hold her down and Jennifer said that Harlie's the biggest fighter she's ever changed a dressing on (I've heard that before from other nurses, too). Which only makes things more dangerous as far as trying to keep the site clean, and trying to keep the line from coming out.

The worst is that changing the dressing shouldn't be that painful. The worst part is taking off the tape. After that's off, there's no pain involved. But, her anxiety is so bad. She gets so worked up and cries the whole time, which is not good for her circulation. So, her hands were blue the entire time we were doing it. I seriously thought she was going to pass out.

Luckily she seems to finally be getting used to the PICC line. At first she wouldn't let you near it. But now she understands that we have to wipe it with alcohol and hook up the meds and she's fine. And she will carry it around with her. I am going to take a picture of the meds so you can see. It's a pretty cool method for infusing meds.

But, for now I have to sign off. After all, it's going to be another busy day tomorrow!

Thanks!
~Christy

First Day of School

Harlie's first day of school was yesterday.

It occurred to me later that I might seem like a mean mom. She was discharged from the hospital at 5pm and was at school the very next day. No break for that girl! And you don't want to know what the rest of the week looks like!

Back to her first day... Somehow it was like she knew what was going to happen. Which is really weird, because she has no idea what "school" is or that you can take a bus to get there. Murphy walks, so it's not like she's seen him do it. But, when the bus got to our house, we told her that the bus was here, and she stopped what she was doing and was very cooperative putting on her coat and walking out the door. And we walked out the front door (which we never do and she went right along).

Here's Brandy carrying her to the bus...



And she wasn't scared getting on the bus. At all! Which I find absolutely astounding. And while the aide (rides with the bus driver) got Harlie in her harness, she cooperated as if she had done it a hundred times. No fear whatsoever, that girl. I just don't get it. After all she's been through, she's still open to new experiences! Amazing.



Here's Harlie, the aide (I think her name is Vonnie) and Brandy.



And here's sweet Harlie, all ready to go.



I told Harlie bye and signed "have fun at school" and she immediately signed "fun" right back to me. And she wasn't just repeating what I said, she was telling me she was already having fun!!! Seriously, how stinkin' sweet is that???

I gave Brandy the camera, and here are some pictures she took during the day.







Of course the IV antibiotics she's on is tearing her up. She's going through a lot of diapers. And she went through the pants she was wearing, and her back up pants and came home in a boy's size 5 pair of sweat pants. Now, that's a first day!

Here comes the bus to bring her home. Nope, we weren't staring out the window waiting for her. Not at all.



And home. After a very productive, fun-filled first day of school. See the cool sweats?



Her teacher sent a note home saying that they sang a song about losing a tooth, since she's the first one to lose one. And that she participated in all activities with NO refusals. Wow! What a turn of events!

That's it. More later!
~Christy

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

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

Preschool friends

The other day, Harlie had her last day at preschool until January. Her surgery is on Wednesday, December 9th. She will look too rough and scary for her preschool friends for at least two weeks. And by that time, it will be Christmas break. So, she will stay out of school until after the holidays. Her teacher and head of school told the students this week that she would be gone for the month. After asking lots of questions, they worked on this poster for Harlie. If you click on the picture it should get bigger.



How sweet is that? I have to admit that seeing it brought tears to my eyes. It is a totally different experience to have her "friends" affected by her surgery and recovery time. I'm not used to that. And I feel bad that they know before Murphy does. We will tell him on Monday. I just didn't want him to worry about it any more than necessary. But I am the worst liar and when Murphy asked me what the poster was for, I definitely paused for a while trying to come up with something. Oh, I am so bad at that! I ended up telling him that Harlie had her last day at preschool for a while and they just wanted her to know they were going to miss her. Which was the truth, of course. Luckily he didn't ask me why she wasn't going to go to school. Whew!

Well, just a short one tonight. More later!
~Christy

Big Days are Here!

So, tomorrow is Harlie's THIRD birthday. And then Saturday is Cooper's FIRST birthday.

This will be a short post. The past several weeks are starting to catch up with me. I'm running more with my training, and my schedule is busier than ever. The combination is proving to be very challenging. I'm finding that I don't have the energy to invest in my posts the way I like. And I'm still behind on that. I still haven't told you about her plastic surgery appointment that was almost two weeks ago!!! That is so not like me! Which tells me that I am way overwhelmed right now.

Harlie is doing great in preschool. She has learned how to stand in line. Brandy told me that it took her a few times to get it, but she did. They stand in line to go outside for play time. The problem is that they have to put on their shoes to go outside and it takes a while to put on Harlie's shoes and ankle braces, so she ends up being last. But, Brandy said that she started to try to put her shoes on a little sooner than the rest of the kids, but that's sometimes hard when they are involved in an activity. But, Brandy said that when Harlie got that she had to stand in line, Harlie was so proud of herself. Thinking about that makes me smile. And that's exactly the kind of thing I wanted from preschool for her.

Oh, and today they celebrated her birthday. Brandy said that she knew they were singing for her, or to her, rather. Which I think is really cute. I'm anxious to see how she does on Saturday at her party.

And, as I'm writing about her preschool experiences, I'm realizing that I'm missing a lot of stuff. And that's really weird for me. Totally normal for a mom, I realize. Most moms can't be there for every first. But, so far, I've been there for everything. And now, all of a sudden, I'm missing stuff. Which is both good and bad. I feel very lucky that I can send her to preschool. Me missing this stuff is a sign that she's progressing - in a typical fashion. But, just like a normal mom, it's still hard. And weird. Very weird.

On Tuesday night her preschool had parent night. We went around the room introducing ourselves. When it was my turn, I added that if their kids were asking them questions about Harlie, I'm very open and would be happy to help them in any way I could. Several of the parents spoke up and told me about how their kids were so excited to have Harlie there. They said that the kids would ask them and the teacher, "Is today a Harlie day?" Seriously? Now how incredibly heartwarming is that?!?!?

Well, back to the birthday celebrations around here...

I can NOT believe that she will be THREE tomorrow! And then Cooper will be ONE on Saturday. It will be a busy weekend. Tom's family comes in tomorrow night. His younger sister (Amanda aka Aunt Mimi) made their birthday cakes. I can't wait to see how they look.

And then I run EIGHT miles on Saturday morning. EIGHT MILES. I am now in unchartered territory as far as running goes. I've never run that far. So, my training is getting a lot more exciting now. The half marathon is November 14th. And I'm really looking forward to it.

Well, that's it for tonight.

Thanks!
Christy

Harlie's First Day of Preschool

Yep. That was today. Harlie's first day in a structured environment. Here she is walking toward the school:



Brandy stayed with her the whole time, of course. She goes from 9am to 1pm on Tuesdays and Thursdays. I was thinking that maybe she would be somewhat cooperative with eating, so I packed her some food. I was hoping that being with the other kids during lunch would help her want to eat. Yeah, it didn't work. She's in quite a slump with oral feedings. But that's for another post some other day...

I will admit that the craziness of the day made me question my decision to put her in preschool. It adds a whole lot of stress, planning and logistical issues. None of which I need more of, trust me.

But, I know that she needs this. She needs to learn to follow instructions and directions. She needs to learn how to behave in a structured environment. And she needs an education. So, I'm going to give this a good try before I throw in the towel. Plus, I think she's going to love it.

She was so excited to see the guinea pigs. When she saw them she signed "bunny" and "cat" and I think some other animal. I guess seeing the animal for the first time was a little confusing.



When she went to the easel she kept saying "write". Funny, because I had no idea that she even knew that word. Which is why I say she needs a more "formal" education. It is hard to teach when you don't get the constant feedback that she's learning. I mean, I know that she is, but it's just not as obvious.



Brandy said she loved this workstation.



It looks like she enjoyed cutting the wooden fruits and veggies, too.



Overall, she did well, I think. She doesn't like cleaning up. But, that's not news to us! I'm very anxious to see how long it takes her to get on board and start doing it without putting up a fight. She's very independent. She walked right into the class and made herself at home. No issues whatsoever with me leaving or with seeing all the new kids.

I asked Brandy about a million questions. She said that the first time she had to suction her caused some attention. The kids came over to ask what that was and what she was doing. But, they seemed satisfied with the answer that it helps her breathe. One of the little boys was in the school last year with Murphy. He had seen Harlie before when I had her to pick up Murphy on occasion. He told Brandy that he wished that she didn't have that thing in her neck so that he could know what she was saying. That is just so darn sweet. And I wish the same thing, too!

And with our new routine today, Cooper had a hard time keeping up.



After we got home both kids were wiped out and went right to sleep. And Harlie never takes a nap anymore. So hopefully that's a good sign that she did a lot of learning!

More later!
~Christy

Meet the Teacher

Wow. Today we walked down to the elementary school to meet Murphy's Kindergarten teacher. Here we are in our front yard on our way...



School starts on Tuesday. I'm not exactly nervous. I don't know what I am. I really hope he remembers everything I've tried to teach him. Like his manners. And to wash his hands after he goes to the bathroom (and NOT to touch anything in there!) and before snack and lunch. I hope he plays well with others. I hope he eats the lunch I pack him. And I hope he listens when the teacher is talking. Maybe my hopes are too high? Yeah, probably. Oh boy, I hope he doesn't cry. I KNOW I will. Heck, I get all teary eyed just thinking about it. Kindergarten. A whole new world. For all of us.

Harlie was supposed to start at a Montessori preschool on Tuesday as well. But, the school had some renovations done, and it won't be ready to open until the NEXT Tuesday. Which, while I know my dear friend Kim isn't so happy about it (it's her school), I am pretty glad. Maybe that will make her feel better. I am glad that I don't have to send Murphy to Kindergarten and then rush back home to take Harlie to her first day of preschool. Can you say "emotional mess?" Because I'm sure that's what I would be.

Even though Brandy will be with Harlie the whole time, I'm still nervous about all that sending her to preschool brings. Which reminds me, I had someone suggest that I do a "show and tell" about Harlie to her classmates. (Thank you, Katie) In general, I think people (including kids) are less weird about stuff if they have a better understanding. So, maybe answering their questions right up front (without them even having to ask) will make them more comfortable with her. And I need to talk to Kim about that. Oh, I really gotta get go and get some other things done.

Here's what I'm going to blog about soon:

Harlie's nutrition appointment
Harlie's GI appointment
An update on Harlie's spinal surgery

Well, thanks for reading,
Christy

Communication

So I have a lot of catching up to do since I've been absent from my blog for a week. I think I'll start with the most exciting thing first.

So, I've been thinking a lot about our communication with Harlie - and about her communication with us. I think signing has been wonderful. I can't imagine what our past two years would have been like without it. However, while I love it, I just don't think it is getting the job done anymore. I think it has come time for me to consider a communication device. She's almost three, and her exposure to people who don't know sign is growing. And I really feel like she wants to say more than just the signs she knows.

Once a month I get together with a group of moms who have special kids, too. And during the last dinner a mom told me about her experience with a communication device. She thought it was very beneficial to her daughter and she saw major progress after a short amount of time. All the benefits she mentioned are things that I really feel like Harlie needs (and us, too). Of course, a communication device was suggested by our speech therapist and she even brought a few for us to see. But that was a long time ago, and I just wasn't ready. But I am now.

So, I called our speech therapist and told her. She was SO excited! I think she knew all along (as well as our last therapist) that this was the direction in which we needed to go. And, even though they were/are right, I am very glad they let me try it my way first (with sign) and let me come to this conclusion in my own time.

So, last Thursday she showed me this new communication device called the SpringBoard Lite. I loved it! It is only 2.5 pounds and she can carry it around all by herself. And she took right to it, too! Within minutes she could say she wanted to play with the doll and change the doll's clothes and then pick which article of clothing she wanted to change.

What's so exciting is that it will open up her expressive communication so much! She can only sign what we teach her. And that's it. She can't sign something she overheard someone else say, something her teacher taught her or something she heard on TV. And there's only a few of us that would understand her anyway. Talk about limiting!

There's a button on this device that is a picture of a little girl. So, let's say she goes to a doctor's appointment and someone says to her, "Hi, what's your name?" Well, she can touch the little girl and the device will say, "Hi, my name is Harlie." Then the person could ask her, "how old are you?" And she could touch the button that has a cake on it and it would say, "I am 2 years old." Now how cool is that? That's a whole conversation that she can't have now. And this way she can talk to other kids, too!

Now if we could just get our hands on one to keep! Unfortunately, that takes some time. First our ST has to show us several different devices (ugh!). Then once we decide which is the best for Harlie, then our ST has to write a letter of medical necessity. She said that will definitely NOT be a problem. Then it goes to our insurance for approval. Once approved, then it gets ordered. THEN it takes 6 to 12 weeks to come in!!! Holy crap! So, hopefully we can get started this week. Now that I've made the decision and I've seen it in action - I WANT IT NOW!

And now that she is starting preschool - I think it is going to be essential. Yes, she starts preschool at Three Oaks Montessori School on September 8th (the same day Murphy starts kindergarten). WOW! She will go two half-days per week - Tuesdays and Thursdays. I will drive Harlie and Brandy (her nurse) to school each morning, and then go back and pick them up after lunch. The challenge will be keeping her therapy and doctor's appointments out of those time slots! Already her speech therapy conflicts on Thursdays (which we're working on fixing). But some doctors don't give you much choice on appointments (they only do clinic on Tuesdays, for example).

There are so many positives to her starting preschool. But the major ones (other than her getting an education) is that she will be able to "eat" with the other kids. So, during snack and lunch, Brandy can give her oral feeding then, while Harlie is watching other kids eat, too. I'm really hoping that she will see that other kids don't shake their heads or block the food from getting near her mouth, or cover their mouths with their hands. And the school has a small class (I think 13 kids total) and it is a quiet environment, which I think will help. With her only having hearing in one ear, if someone calls her name, she'll hear it, but she might not know which direction the person is calling from. So, with a lot of kids talking/playing in one room (like in most preschools) I think that would overwhelm her.

Anyway, her speech therapist said that kids love computers and that with Harlie's communication device, she'll be very popular and kids will want to talk to her. I just don't want them to be afraid of her. And it would be great if she could talk to them and let them get to know her personality. I really believe that once she is given a chance, you couldn't help but like her.

So, hopefully we can get things moving so I can see what my little girl has to say! See, isn't this exciting????

Thanks!
Christy

Preschool Planning

Harlie has been in our county's Early Intervention program since she was just a few months old. This program helps give children with special developmental needs the services they need (like speech, physical and occupational therapies). But the program is from birth to age 3. Hard to believe, but Harlie will be 3 in September. Which means that we need to start planning what we're going to do with her after she ages out of the EIP.

The problem with Harlie is that she needs these services, and will continue to need them for some time. But, she doesn't fit in with the special needs preschool classes offered through the county. Because she's cognitively aware, we don't even think she'll qualify. Which is a good thing, I know. But, I don't really know that a regular preschool program will be a good fit for her, either. For one, most regular preschool programs have large classrooms. And while she'll have to adapt to that environment by kindergarten, I don't think it would be a wise decision to put her in one now. She's still catching up after all, and her language skills are certainly an issue. Although as long as she has her trach, her nurse could go with her. But still...

I clearly need to do some research and put some time and concentration into this decision. I haven't made up my mind about anything - heck, I'm still in the information gathering stage. And our services coordinator with the county said she is going to meet with me and Harlie's speech therapist to put together some goals and try to figure out what our options are and what is best for her. We're scheduled to meet at the end of May.

I will admit that I'm feeling a little bit overwhelmed with this whole ordeal. Now that she's getting older, I think things are getting "harder" in a way. The decisions we make are vital to her progression and development and the system and finances all play a part (which doesn't help). Heck, if it were up to me and money was no issue, I would hire a speech therapist to work with her for an hour 5 days a week (right now she gets one hour per week)!

I think I saw something about home preschooling - where someone who's qualified (not me, of course) would come to our house for a certain number of hours per week. I don't know if that is an option for her, but I guess we'll find out soon.

It is comforting to know that when she gets to kindergarten, if she still can't speak, then the school will have to provide a sign language interpreter for her. Well, at least that's what I heard. I still have a lot of learning to do... and so does Harlie. I can't think too far ahead. Things could be totally different by then. I guess I should just stay focused on summer and fall. We certainly have enough things happening in that time frame to keep us busy!