A Little Something Extra

Tuesday, July 13, 2010

NDSC anyone?

Yes, we'll be there!  Orlando, here we come!  I'm really looking forward to meeting some of my blogging friends IRL (in real life).  And catching up with the Baeten family (we used to live close to them, and Melanie was a great support for me when we learned of Micah's diagnosis since she had walked the path just eight months before us).  Please pray for us on this trip, specifically that Micah would not wig out with all the people and noises... never mind that freakishly large Mouse!  We're also looking forward to seeing some dear friends from our days of living in Orlando.

If you've come to the conclusion that no news is good news, then you're right on target.  Micah has had a few issues since my last update, but nothing significant.  He sees the immunologist today.  Please pray that they have a good phlebotomist.  Micah is a "tough stick" on a good day (he has rolly polly veins, and once they get a vein, they usually don't get enough blood out of one... it's not fun for anyone).  We're hoping that he gets an "all clear" from his septic/toxic shock event from April, i.e. he has no significant immunity issues that would require long-term treatment or mommy paranoia.  I don't know how long it takes to get the bloodwork results back.

On a separate note... I am NOT PLEASED with what is going on with Micah's EI (early intervention) services this summer.  I like to give people the benefit of the doubt and believe that everyone has his best interest in mind, but that is clearly not the case here.  One of the benefits of EI being part of the school systems in the state of Minnesota is that there seems to be a fairly good transition from EI to preschool.  But right now we are experiencing one of the detriments to school-based EI; that is, summer schedules.  Someone has determined that Micah only gets to see a physical therapist ONCE A MONTH over the summer.  Seriously.  My two-and-a-half-year-old who doesn't stand on his own or walk only "qualifies" for once a month?

And it doesn't help that Micah's special ed teacher (who coordinates his services) is transitioning out of the birth-to-two responsibilities and will no longer be working with Micah (by the way... Tim is Micah's absolute favorite and he will miss him tremendously).  Oh, and his OT has moved on to greener pastures so Micah hasn't seen an OT since the first week of JUNE (except for the private OT who sees him for feeding therapy... I tote him up there twice a week and I'd really rather not go more often to pick up PT and OT, nevermind that we're about out of our 30-visit annual maximum with our insurance company).  Rumor has it that someone was quickly hired to take the EI OT's place.  But we have not heard from said therapist yet.  Nice, huh?

I'm doing my best to be patient, but I'm afraid that after our return from Orlando, I'm going to have to set up a time to meet with the director.  This is beyond ridiculous.

And for your viewing enjoyment... a photo of the cheese face!

10 comments:

James 1:27 Family said...

On top of "regular life," scheduling all of those appointments and coordinating all of those services is so stressful! I will be praying that it gets worked out without you having to scream and shout. But... if you do, go right ahead. You're Micah's biggest fan and defender and you have every right to do that.

I will also pray for the blood draw and the results.

I love the picture!

Amy

Melanie said...

We can't wait to see you all too!! Have a very safe trip and see you tomorrow!

B. McKenzie said...

UGH! EI can be SOOO frustrating. I hope it all works out. We all have to go through this unfortunately. We just had to deal with losing both our PT and OT - luckily after tons of phone calls and emails, we are now fully staffed again. Enjoy your trip!

Kirsten said...

Hey Jennie - we've had some odd summer experiences too - so frustrating - sorry!! Jordan didn't qualify for EYS at all last summer which kind of cracked me up - really? She has an extra chromosome for crying out loud!!

I am sure people have mentioned it to you but you might want to consider TEFRA - they will help pick up the cost and extend the amount of therapy you can do.

We've had great experiences at two therapy places - "Therapy for Me" in EP and "Therapy Junction" in Plymouth (but right up 494 so super easy to get to - well we'll see if I still think so this fall when therapy has to be at 5pm - lol)

Is he going to be at the ed center next year in a two year old class or are you going to keep doing at home?

GML4 said...

Don't be afraid to call PACER for you issues with the school. Summer schedules are tough for families and their teachers, and sometimes things get swept under the rug.

Have a fun weekend!

Tracy said...

So we will NOT be attending once again this year. I would love to go one of these years. Do you know what people do with their kids during the actual conference? Does the daddy stay back? I haven't quite figured that part of the trip out yet. have a great time and share with the rest of us that are fortunate enough to go all the stuff you learn!

Tracy said...

Ah yes! Welcome to MN! I had the same issues with Molly 0-3 program. She is learning by leaps and bounds now that she is in preschool. I HATED having to constently FIGHT with the Birth-3 program here! However, I have "heard" that where you live has great services and more money so I am somewhat disappointed in their inability to give Micah was he deserves and more importantly NEEDS for Cripe Sake! Ugh!!!

Emily said...

Wish I was going! Someday I hope to make it to one! Hope you have a fabulous time. Praying for good blood results!

Kelli said...

I'm so disappointed we won't be going to the NDSC this year! I would have loved to meet you!! Hopefully next year!

Tracy said...

I hope we get a chance to meet you in Orlando. Our blogger group is getting together at the Peppermarket on Saturday at noon. Hope to see you there.