Monday, September 12, 2011

Quick Update

So much to blog, so little time...


I can't remember if I told you that we had not restarted Murphy's ADD meds.  He gained four pounds over the summer (and he's still super skinny) and we were so enjoying having him hungry!!!  So, we were going to see if he could be successful without the meds since his teacher/class this year is a better fit (a calmer, less stimulating environment) for him.

I e-mailed his teacher Wednesday night (day 2) and let her know of his ADD diagnosis last year and that we had not restarted his meds and we would appreciate her feedback.  She e-mailed me back that he was doing "fine in some areas but having difficulty in others."  She said she wanted to meet with me or talk over the phone.  Darn it!!!

So, she called that afternoon and told me that he is a very sweet, respectful, social and likable kid.  But, that he cannot stay focused.  She said that he plays with the stuff in his desk.  When she was explaining something, she looked over and saw Murphy using two glue sticks as binoculars.  He clearly was not listening to a thing she was saying.

So, on Friday, we gave him his meds and sent him on his way.  The good news is that afternoon his teacher e-mailed me and said that he was so much better that day and that he was calm, focused, helpful and one of the best students in class!!!  At least we KNOW he needs the meds.  No more second-guessing ourselves on this one!

The bad news is that all day on Friday he only ate a few carrot sticks and a half of a granola bar.  All day!  It sucks that we have to chose between learning and nutrition.  They are both important!!!


Kindergarten is going well for her, I think.  She seems to like it.  But, of course she can't tell me all about it.  Although I am THRILLED to report that she has been wearing her speaking valve (PMV) and she has been making a huge effort to verbalize.  The other day I asked her if she had a good day and she SAID - clear as a bell, "good day."  Murphy was in the kitchen and he could hear and understand her perfectly!  That was so awesome to hear!!!

There are some kinks to work out (which is totally expected).  Unfortunately, her communication device isn't being used the way it should.  And even more unfortunately, it's going to take some effort to get that to change.  After I found out they went all week without using her device I e-mailed her teacher that we need to have an IEP meeting.  The bad thing is that we had her last IEP meeting before we made the big decision to pursue using her device as a main means of communication.  So, she has been assigned a sign language interpreter.  But, that's not what she needs.  She can hear with her hearing aide on.  She just needs someone to help her use the device to speak.  So, we'll see what happens...

She missed the bus this morning.  Her original pick-up time was 6:48am.  On Thursday we were told the new pick-up time (starting Monday) would be 6:53am (YAY!).  So, this morning we went out at 6:53 and she was driving away.

The worst thing about this was that it was the one day that I had a commitment to be somewhere at 9am and it was an hour's drive to get there.  So, when she missed the bus at almost 7am, I still had to get a shower and get ready AND drive them to school (in the opposite direction of where I needed to go).  Oh, and my gas light was on, so I had to stop for gas.  Considering I woke up at 5:30 to start working on  getting her up and ready (I wake her at 6am after I give her a breathing treatment and meds) it was a busy morning and not a good one to miss the bus - it really stressed me out.  I felt so horrible that we didn't try harder to be at the end of the driveway.  But, we were feeding her breakfast and then on the way to the door Harlie said she had to go potty.

As it turns out, Brandy found out that after they told us our new pick-up time was 6:53, it got changed to 6:41!!!  And no one told us.  But the driver came at 6:48 and then waited the required TWO minutes and then left.  UGH!!!

So far there are a lot of issues with riding the bus.  And they are making me feel very stressed.  But, I really don't want to commit to driving them everyday.  So, I'm going to call Transportation tomorrow and see if they can do anything to fix the issues and make riding the bus a little more bearable.  As it stands right now - she spends TWO hours a day on the bus!!!  Doesn't that sound like it's too much?!?!?

I am also worried about the playground.  Jennifer went to school with her on Friday and she said that she was run over by the other kids.  She tried to help her play, but she's so slow compared to the other kids so they just run right over top of her.  Jennifer said that she and the other little girl that's hearing impaired gave up and just went and sat on the steps.  Ugh.

Tom measured the kids the other night on our measuring wall upstairs.  Cooper is one inch shorter than Harlie (and he's two years younger) and Harlie is SIX inches shorter than what Murphy was when he started Kindergarten.

Oh!  And Harlie lost her first tooth - naturally!!!  She's lost four in the past, but they were all due to surgical issues.  This is not the best picture - but it's all I got.  She didn't quite understand what all the fuss was about and had no interest in showing her teeth to the camera.

The picture was taken during a feeding.  Here are more photos from that awesome (note the heavy sarcasm) feeding session:

Are you still here?

Why do you make me eat this crap?
Honestly, I don't know who hates oral feedings more - me or her?


Tomorrow is Cooper's first day at his new preschool!!!!  WOOHOO!!!  My house is a wreck, Harlie's food supply is low, laundry is piled high and paperwork is out of control.  Oh I can't wait to get some things accomplished around here!!!!  And I hope he really likes it, too.

Well, that's it for now.  More later!


1 comment:

ANewKindOfPerfect said...

Okay, the pictures from feeding time made me laugh. I know that wasn't the objective but that is the reason I gave up on oral feeds for Emily. We would have had to give up now anyway, but I gave up long ago. She is happy and healthy on g-tube feeds, and pushing oral feeds made her miserable. Although Hailey certainly looks adorable peeking through her arms at you. :)