Jake’s Tummy-An Invested Family

Our long awaited appointment for Jake and his tummy problems finally happened.  I’m going to try to keep to the “short story” side of things, but we’ll see how that goes.  Just warning you.

The appointment was about two and a half hours long and four specialists and two assistants sat in with us.  They played with him, fed him things, watched how he played with toys and asked me 1.3 million questions.  Jake did really well, even though they pushed him pretty hard and they asked me to not intervene, even when he had his meltdowns. 

After the appointment, the doctors decided that Jake has three distinct problems.  Acid reflux, which we knew about already, Hypotonia (a weakening of joints and muscles), and a sensory disorder. 

The acid reflux is getting better. Markedly better.  Jake actually ate six blueberries in a row this morning and only looked a little worried around the edges.  Since he had a nasty flu last week, he’s still weighing in at a whopping 20 lbs, 8 oz., but it’ll get better.  Whew!

The hypotonia sounds super scary and while it’s not great, it’s not like he flunked second grade either.  Basically, his wrists and hips are weak and he compensates in weird ways.  Almost everyone has noticed that he sits funny-one or both legs bent back and never just sits with his legs out in front of him.  He walks, but won’t bend his knees and we call him “the penguin” since he walks stiff legged.  Those weird things he does are to compensate for not being strong enough to sit or walk normally.  They said that he will probably have pretty bad handwriting since it will affect his fine motor skills.  I think that’s hereditary since both Daddy and I tend to write in hieroglyphs.  The hypotonia is something that may be an issue for a while, but won’t be life changing.  

The sensory stuff is going to take some time.  His sensory issues, and maybe all sensory issues, manifest in a phobia of textures.  He’s afraid of textures like I’m afraid of spiders.  I’m cool if I see a spider outside, but if one is crawling on me, I totally lose it and run around the house yelling, “Get it off!  Get it off!  Get if off!”  Jake can handle textured things being near him, but if we try to give him something with a textured surface or an odd feeling surface, like bubbles, or salted pretzels or peanut butter, it’s almost as if his appendages retract into his body and he becomes a little screaming ball of Jake. 

We have some exercises we are going to start doing with him, one of them literally running a little brush over his body and then massaging his joints with the idea that it will overstimulate and then calm him.  We need to hug a lot, (yay!) and rock him a lot, (yay, again!) and work on identifying stress and helping him calm himself down.

Jake has a LOT going for him already.  He’s smart and determined.  He’s adventurous and it BUGS him that he can’t do something.  He wants to try textured things so badly and even reaches out for them, but always changes his mind at the last moment.  That spirit will get us pretty far as I learn to help him not be afraid.  He really wants to do what we want, which will help in trying new things.  He also, and I didn’t see this until eit was pointed out, can do what’s known as “self-calming”.  When he gets stressed, he holds his hands tightly together, presses his back into his highchair or puts his feet under the lip of the tray and pushes hard.  Those are all things that the therapists usually have to try to help a kid learn how to do, so we’re ahead of the game there, too. 

It was an overwhelming appointment and it was hard to see him so upset and not be allowed to intervene and comfort.  I held it together pretty well.  Until!  I saw the doctor’s recommendation and at the very top it said, “Jake’s biggest strength is an invested family”.  I started to cry and hugged Jake to me and said, “Yes!  He DOES have an invested family and we’ll do anything it takes to help him get better!”  And then, I cried some more and all the specialists got emotional and we told each other how wonderful we all are and then I felt better.

As I sit here typing, Jake is eating rice chex off his tray and looking at me as if to say, “Mama, PLEASE get these off my hands” and making his usual monkey sounds.  We’re laughing and making faces at each other and he’s kicking the dogs.  Even though we have a hard road ahead of us, I’m so thankful for a funny, happy, smart, and sometimes weird little kid.  I don’t know what I would do without my Monkey!

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6 Responses to Jake’s Tummy-An Invested Family

  1. Illyse says:

    Yoni had a lot of the same sensory issues. He was terrified of being anywhere near grass, loud noisy and about a billion other things. He still has some sensory issues and still gets OT for them, but they are actually very different issues than the ones we say when he was Jake’s age. But, the great thing about the sensory stuff is that they have great OT options for it, and with OT, they DO in fact outgrow it!!

    Trust me, feeding therapy and sensory OT made a huge difference for Yoni and will make a huge difference for Jake. And, they are right, an invested family (not to mention a kick-butt mom) make a huge difference!!

    I only know about hypotonia from other moms in OT/PT who’s kids have that diagnosis. Again, a lot can be done with OT/PT and a very involved family.

    I know it seems daunting, but you guys will get through all of this and in a few years you will look back and say “wow, what a difference a few years, and some excellent therapies, make.

    Sending love and prayers,
    Illyse

  2. Michael says:

    Mary,

    Wow! The sensory thing is a bit scary. With Peter, that has been an interesting (to say the least) ride. I am praying for you and your family.

    Michael

  3. Dyann says:

    Yay, Jake!

    And Yay for Invested Families!!

    And Yay for intuitive specialists, etc. What a fabulous blessing!!!

    And Yay for telling ourselves how wonderful we all are. I loved that line. Keep it up, Mama!

  4. cheekypinky says:

    But!

    ANSWERS!

    And help!

    And GOOD therapists and doctors who don’t try and make you feel like a moron!

    Jake will be just grand–
    so will you, my lovely friend.

    (and you, Greg!)

    I sympathise with the texture thing, Mr. Jake,
    but believe me, kiddo–
    in college, you’re gonna want those pretzels.

  5. Janet Wagner says:

    Okay, a few surprises, but LOTS of answers. Jake’s mama and papa are great and they will do all they can to help him deal with his weakness and disorder.

    A lot has happened this week, so . . . how about making next week just a routine one!
    Love, Janet

  6. Shannon Wilson says:

    YAY YAY YAY! Ok, so it sounds like there’s progress on all fronts–at least in the form of answers. SO HAPPY for that! We’ll continue praying for Jake and your awesomely investedness. 🙂

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