A Few New Things:

8 Aug

Did ya notice? Huh? Huh?

Go ahead and look around, I’ll wait.

Do you see what’s new?

I finally broke down and bought my URL. Yes, I know. It’s a big deal in LaLa land. I am also contemplating a new blog design. We’ll see how the funds pan out for that.

On a more somber note, Lennon’s swallow study did result in a diagnosis: oral dysphagia.

While I am thrilled that we have a diagnosis and, thus, we are supposed to finally be getting help…the help is way. too. slow. in. coming.

I emailed that video of Lennon refusing food to her pediatrician at the same time that I posted it here. About three weeks later I received a casual response asking how Lennon was doing. NO mention of the video or anything.

After the swallow study they scheduled her for therapy. Two weeks out. Then screwed up and cancelled it accidentally, and then said that they no longer had any appointments available until early next month.

I had a few choice words for their customer service department and now she will be seen in another week and a half.

This is bull sh*t.

Seriously.

Her public health nurse came out for her 6 month eval in the mean time (they evaluate the twins to see if they still need early intervention services every 6 months) and she recommended an appointment with a psychiatrist. She said that she felt and Autism diagnosis may be appropriate.

Still haven’t heard back from them either.

I hate feeling helpless, and I also hate what I have to do to feel empowered which is to call and make complaints and freak out at people until something gets done. That’s what I had to do when I realized that Lennon had craniosynostosis and that looks like what I am going to have to do now.

I’m not pushing for an Autism diagnosis because, honestly, I’m not convinced that that’s what it is. I’m not convinced that it’s not either. I know I’ve said it before but some of the things she does screams “AUSTISM” while others seem so completely UNautistic.

All I know is that my child is having some sort of VERY SERIOUS issue and even though she is supposedly hooked up with all of these special services and early interventions and yadda yadda yadda…here we sit while she wastes away! ridiculous.

::Sigh::

Lest this blog become a bitter rant about the worthlessness of the American medical system in it’s current state, my next post will be cute and fluffy and chalk-full of baby/toddler/twin cuteness. Promise. And I promise that it won’t even be a gazillion days from now. Cause I bought my URL and now I’m going to use it.

I pinky swear and everything.

***** PS – Anyone else having a problem using tags w/ WordPress? Mine haven’t been working for awhile. Hmmm.

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5 Responses to “A Few New Things:”

  1. Allie August 8, 2010 at 9:26 pm #

    Mine have been working fine. I just ALWAYS forget to use them. I hate the catagories showing up under my header.

    Anyway I am so sorry you have had to fight so hard to get your daughter the treatment she needs. That isn’t fair to you or her by any means. My niece has a lot of therapy issues and my sister has never had a problem getting her services here. It is so sad that they either are taking their time or are completely overwhelmed and under staffed. I hope her therapies are able to be set up soon so you guys can get her moving better in the right direction!

  2. Ms. J August 9, 2010 at 7:09 am #

    Waiting sucks . . . we do it while WAITING to become parents, then WAITING from one OB appt or social worker/adoption/paperchase) appt to the next, and now here you are WAITING again, and every moment is excruciating.

    I am sorry for all the phuck ups that you are encountering. I can’t imagine how exhausted you are, on so many levels, which is compounded by your worries.

    PLEASE keep fighting. And lean on all of us when you need a shot of whup ass to keep you in the fight.

    HUGS.

  3. Michell August 9, 2010 at 9:37 am #

    I hope things get worked out soon and that you can get the interventions you need for Lennon.

  4. Chelle August 9, 2010 at 7:34 pm #

    Oh my gosh! I just read through your last post too. That has got to be so very difficult on you as a mother. It breaks my heart to watch the video and imagine how hard that must be for you. Poor little Lennon!

    It really sucks that you have to scream and throw fits to get what you need, but apparently there is no other way. I would have a hard time with it too, but when it comes to that precious little girl, you do whatever you need to to get her help. Let me know if you need me to come help you get people to give you attention, especially this week when I have the PMS Avenger on my side. 😉

    I pray that her appointment helps. Poor Lennon. 😦

  5. Tammy August 10, 2010 at 2:06 pm #

    Oh wow. You sure are going through so much. I can’t even imagine. I hope Lennon gets better and you get some good, serious answers.

    (((HUGS)))

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