Knocked Down

This week has been a trying one. I apologize in advance for all the venting- it’s like a flip switched and we went from simply enjoying our son to fretting about everything. I want to go back to just enjoying Eli.

Between feeling frustrated that I’m not doing enough for him, to being run ragged by insurance companies and physical therapy providers to Eli’s vaccines. It’s been rough. Im not gonna lie- I finally cried today.

I spent 3 hours this morning trying to find pediatric therapy in our area that accepts our insurance. And when I find one it’s either out of network or they have a waiting list for PT services.
So I called insurance to see if they could find some place for me. After 45 minutes with one lady, I wound up with 2 numbers neither of which wound up being for pediatric PT.
I finally spoke to one lady who broke down the out-of-network costs which made my throat swell and eyes water. Crazy expensive. Why does this have to be so difficult?!
She then sent me back to the Medicaid route.
We never applied because we were told Eli didn’t qualify based on our income. But then we were told his diagnosis automatically qualified him. Ugh. So after being transferred all over the place I finally spoke with a nice lady who offered to mail me forms. *sigh*

Add to that a fussy baby. This stressed and doubtful mama has had enough.
Eli hasn’t been himself all day after his vaccine yesterday. He is listless, grouchy, tire and has glossy eyes and wouldn’t smile. When he finally did give me a smile I cried again. I hate this. A vaccine that’s supposed to protect him has changed my little man. I was already questioning the decision and now I’m feeling terrible for the choice we made. I just want my little man back. And I just want to get him what he needs. 😦 why does it have to be so difficult?

Our OT comes on Monday morning. I will be looking into getting him evaluated for ST and PT then. I just feel defeated today. But it will be a new day and we will figure this out.

In the mean time, I’m looking for suggestions for good PT work outs for little man. Help!

Pray he feels better soon and gets back to his old self so this nervous mama can relax a bit. It’s been a rough week!!!


13 Replies to “Knocked Down”

  1. Have you heard of the book Gross Motor Skills in Children with Down syndrome? It’s a great book!!! There are several others too. This has all sorts of ideas. I was once in your shoes and finally came to realize I’m the expert. I know Beau better than any OT, Speech, or PT therapist (this took me 3 years to learn!) This to shall pass! Promise. Just love on that sweet boy!! That’s all you need to do today! Sending strength your way. Your a wonderful Mommy!

    1. Thanks girl! 🙂 I feel much better today. That book has been suggested a few times and I have a friend who is going to loan it to me.
      A girl can only take so much, you know? Good thing I feel rested so I can tackle this better on Monday. 🙂

    1. We get OT twice a month through ECI and that’s it. He doesn’t qualify for SSI because of our income. We were told that because he was denied SSI he automatically would be denied medicaid but we are going to apply anyhow…we’ve also been told he qualifies simply because of his diagnosis. Very confusing.

      He’s feeling better already. I just worry. And deciding to vaccinate was a huge deal for me. 😛 yuck

      1. that whole system is a mess. rachel qualified at birth and was able to receive medicaid until we moved. once we moved to AL she was no longer able to get it. she received SSI while she was in the NICU but once she came home she no longer received it. i’m trying to remember but i don’t think rachel got PT until she was starting to roll? we had a play therapist come once a week and she worked on a number of things with rachel until she was old enough to need PT and OT. we never had speech until she was about 18 months. are you not getting PT because they say he doesn’t need it yet?

      2. Im not sure why he’s not getting it. I plan to ask for an evaluation when our OT comes on Monday.
        Eli’s been rolling over since he was 3 weeks old so I dunno. But you are right, the system is screwy and I wish it was more clearly outlined. I feel frustrated that I have to fight so hard for something so simple.

        Do you remember any thing you guys worked on specifically?

      3. just took a look at my blog. rachel started receiving play therapy at 2 months adjusted age and modified PT at 4 months adjusted age (with the same therapist). i’m not sure when she got a actual PT person but i’m thinking she was probably 6 months adjusted.
        get used to fighting. it’s like that a lot of times, unfortunately.
        i don’t remember anything really. my brain has been completely replaced with mickey mouse club house songs.

  2. I was going to suggest the Gross Motor Skills book too 🙂 It is very helpful and detailed. The chapters are broken down by skill level and ‘milestones’ and not something like what they ‘should’ be doing at 6 months, 9 months etc. It’s just all based on where they are at and you can follow along or jump around the chapters.

    I know all states are different but I think you should be able to get PT/ST through ECI just like you do with OT; how come you’re having to go private for that? Sorry this whole thing has been so frustrating. I’ve always heard there are such long waiting lists for medicaid, but there is also a waiver (sometimes known as the Katie Beckett waiver) that you can look in to. I believe Ds is a qualifying condition for the waiver, so if you don’t qualify based on income you can qualify based on dx.

    Wish I could give you a hug!

    1. I plan to get the book. 🙂 sounds very very good! Definitely need to check it out.

      We are going to request an evaluation for PT and ST just haven’t been able to through ECI yet. Monday.

      Thanks for the name of the waiver- that may be exactly what we need. I’m going to look into that. 🙂 that’s nearly as good as a hug. Hehe

    2. It looks like I’ve already got Eli on all the waivers offered by our state. The waiting lists are as long as 10 years before his name will come to the top.

      There doesn’t appear to be automatic eligibility because of his dx. Definitely still plan to apply regardless…could still be incorrect or still could qualify. Medicaid will be one of the only ways we can get the services he needs.

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