Jake’s Fingers-The Plateau

This week has been an off week for Jake’s therapy.  Last week, Becky and I decided to dial to give Jake a little break.  By accident, I gave him a big break from therapy.  I had a stomach bug going, so Jake’s snack therapy didn’t happen.  I still worked with him, encouraging him to lick his lips, learning to blow, biting with his back teeth, all the things we are currently doing, but during meal time.  When I was feeling up to it, we went for very slow walks around our neighborhood or the back lawn and I was happy to see Jake’s progress in wanting to interact with his environment.  Well, he alway wanted to interact, but he was afraid of interacting.  But, this week, he picked up rocks, touched leaves and even carried a big stick around for a while.  I thankfully avoided having to explain to our neighbors why I was excited that Jake was jumping up and down on their plant.  (The plant was mostly dead, by the way.)  I did suggest to Jake that maybe we should wait until we got to the park to be quite so free with other yards. 

The benik vest is still working wonders for him and I’m very thankful that we have it!  He’s being more patient about the process of putting it on and I’m slowly learning what kind of shirt we should have on underneath it so that he isn’t too bugged and how to place it just right to minimize discomfort.  Poor guy! 

The physical therapy exercises caused a great deal of fuss and angry screeching from Jake.  Since his leg have been literally locked straight or bent backwards in his classic “W” shape, the inside leg muscles (hip adductors) are so tight that sitting cross-legged, or anywhere close to that position, is painful for Jake’s legs.  The reason that we need to get him to sit like that is because cross-legged is one of the only positions that provides no support to his core muscles.  In other words, if you sit cross-legged, but don’t engage your stomach muscles, you would flop over backwards.  Since Jake has very little core muscle tone, we need to get him to sit in ways that will start to build up that tone.  I have a feeling that the physical therapy will cause even more stress on us than the eating therapy since the eating therapy was just scary and not physically painful.  I’m just hoping that we can get his little body’s problems unravelled and eliminated before he’s old enough to remember that he even had problems!

 I also managed to finally get the doctor’s authorization to come through for Jake’s physical therapy.  I’m hoping that we will be able to schedule an evaluation within the next six weeks.  Becky promised to help encourage along the process.  

After today’s therapy with Becky, we agreed that Jake is on a plateau.  He’s doing well, but his progress hasn’t moved up in a few weeks.  I want to be fine with the plateau, but to be totally honest, I would love to see leaps and bounds every week.  So, I’ll be getting over that in the next hour or so.  Honestly alway helps.  🙂

I was not at all surprised today when Becky mentioned speech therapy.  I knew it was coming, but was hoping that Jake would start to be intelligible all on his own.  So, after physical therapy will come speech therapy.  This kid is going to be “theraped” to within an inch of his life.  😛 

I learned today that the reason that Jake crams an entire french fry into his mouth is that the inside of his mouth, just like the ret of him, doesn’t process senations correctly.  Little food gets lost in his mouth and he can’t find them.  As a result, he swallows pieces of things that are too big to get down his throat and frequently has to cough them back up.  Litte sensations don’t process well, so, in his mind, the more sensation the better.  Hence, the entire fry.  That is something that will get better with time and therapy and work.

Another thing I noticed this week is that Jake hasn’t been chewing as well and has been choking more as a result.  To counteract that, we’ll be adding deep pressure work prior to every meal and snack.  Deep pressure work means joint compressions, having Jake push or pull things, pick up heavy things, anything that helps him remember where his body is, where his body parts are, and kind of help him calm his sensory system down and orient him a little better.

To be brutally honest and hope you’ll still love me, I have a really bad attitude about having to add deep pressure work five times a day in addition to brushing, joint compression, Benik suit wearing, and physical therapy every day.  More about this in a post in the next week when I have worked out what’s going on with me, but I’ve realized I’m extremely over-loaded and need to give myself a break from working so freaking hard all the time.  I’m seriously just going to have to pray myself through this one, relying on God to give me the right heart and a good attitude. 

So, that’s us for another week.  Right now, I think I’ll take me and my bad attitude and go give Jake a really big hug and go out for chinese food.  And thank you all, once again, for coming along on our journey.  I love having you with us.

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7 Responses to Jake’s Fingers-The Plateau

  1. cheekypinky says:

    It’s okay to be frustrated, friend.

    You do not have to be the valedictorian of this.

    (even if you really are)

    Jake is going to be just fine–
    he can’t help himself with you fighting so hard for his health.
    Can you do therapy while dancing around to fun music?
    Or while watching a favorite show?

  2. Mom says:

    I still love you!

  3. Dottie says:

    Being a frustrated parent under the best of circumstances is normal. With all that you have to do for Jake, it is perfectly understandable. You’ll do the right things–so be frustrated–it’s okay. Love you both–oh yeah, and that big guy too. 🙂

  4. Shannon Wilson says:

    You are a supermom in my eyes. You’ve got so much more going on than most parents–and you’re doing it. It’s totally OK to be exhausted. You’re doing A LOT. Take care. 🙂

  5. Michael says:

    I like “theraped”. Sounds about right…but is it Jake or Jake’s mom who is “‘theraped’ to within an inch of his [her] life”?

  6. Laura Jane says:

    Yeesh. Just reading this has made me tired, love. You do a LOT. So much that he’ll never remember but he’ll always benefit from. You’re lovely and dedicated and you make me want to be that dedicated to the things in my life that require work. I love you. Hoping we get to see you sooner than laaaaaater.

  7. Becky says:

    Love you, friend.

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