We Got Your Back {a physical therapy update}

“So, Miss Adelaide is kicking butt and taking names in the physical therapy department…both at the center and at home. We are basically physical therapy rock stars. Walking, here we come!”

How I hope to use that intro someday. The truth is that we have both been having a rough couple of weeks. Adelaide had a virus. Then, she had an upper respiratory & double ear infection. I am just tired and weary and actually justified wearing pajama pants to Monday’s PT. {Technically, they were sold as yoga pants, but have since lost their yoga-ness and are faded and stretched like a pair of comfy pajama pants…because I wear them to bed all the time. I actually wore them to bed Sunday night. And then wore them out in public. Without washing them first. New levels of weariness.} Therapy at home has been difficult, since Graham doesn’t nap and spends all our pt time trying to distract Adelaide. We are trying to get in 1 hour a day, but ended up with 15 minutes yesterday. It was one of “those” days…complete with Graham hitting Adelaide in the face with a ball.

I think my friend, Heather {over at God Centered Mom}, had it right when she said I am battling with changing my expectations. I was ready for a trip to Paris, but our plane {Dave says a fighter jet makes this analogy better} landed in Holland…and I am having a rough time enjoying the amazing sites Holland has to offer. I bought a ticket to Paris. I even landed in Paris for several months. Somehow, in a Doctor Who/Tardis scenario, I was transported to Holland instantaneously! I wasn’t ready for it. I am still not ready for it.

Adelaide is making progress, but it is slow.painful.hard to watch.

Each appointment has me wondering, “How long is this going to take?” “Will it always be this hard for her?” “Why is this happening?” There are no concrete answers to these questions, but we are getting a second opinion on the cyst early 2013. We are hoping to find out: the size and nature of the cyst, if it is placing pressure on her brainstem, if it will get bigger, if there is a tumor in there, and the list goes on and on.

Positive Notes:

Adelaide caught herself. She actually used her arm to catch herself! She stayed this way for almost 2 minutes. She can rest in the cracks sit on the couch, because the cushion shape offers some support. We do this when we can, but she usually faceplants within seconds. We don’t yet know when independent sitting will take place.

She also used her arms to hold herself up. She still can’t push herself up, but this was a GIANT accomplishment!

She sat for about 15 seconds at the piano! This was another HUGE moment! Jennifer jumped back into the photo before Adelaide hit the ground.

Note that Adelaide is not rocking her yoga pants. I thought someone on antibiotics deserved to wear pajamas. I, also in pajamas, cheered her on.

We have also learned that Adelaide’s back, which has the strength and shape of a 3-month-old’s, may have long-term {or permanent} damage. Or, her lower vertebrae may change shape as she gets stronger and her back may “fix” itself. We just don’t know.

So, we have seen improvements in the past two weeks, but I vacillate between excited and weary. Tomorrow is a new day, a new session, and I am going to wear actual pants. I may not have bought this ticket to Holland, but I am here and I am going to trust that God knows exactly what He is doing.

“Those who know your name put their trust in you, for you, O LORD, have not forsaken those who seek you.” Psalm 9:10 (ESV)

Advertisements
Tagged , , , , , , ,

7 thoughts on “We Got Your Back {a physical therapy update}

  1. Meta says:

    :( poor addy. But she is THE CUTEST LITTLE GIRL EVER! I find I am in the best mood and more positive when i don’t think about the when and how long and will she ever?’s. Because once you start it’s just a downward spiral of darkness. :( I know it’s hard though!

    Praying for you!

    Like

    • lyndseballew says:

      So sorry! I didn’t see this! Yes, I completely agree…she is the cutest girl ever. ; ) Things have been rough in the PT dept, but we are staying strong. Question: Does your little girl have extremely tiny feet? We found out that Adelaide’s tiny feet are most likely part of her disability.

      Like

      • Meta says:

        You know, on a whole, she’s tiny! My therapist last week said (in a very cute and complimentary way), “she’s got a big head, and a wee little body, and a weak neck… it’s just a lot for a little girl to try to move around!”. In comparison to almost every baby plus or minus 3 months of her, they all have bigger feet and bodies! hah. So, I don’t know. :( But I do think the small frame in general doesn’t help our little girls. they need some bulk and muscle!

        Like

      • lyndseballew says:

        I agree! We did confirm today that Adelaide’s little feet are not helping her with weight-bearing. Plus, she is getting heavier and her hips just can’t support it. No hip strength and some beefy thighs… :)

        Like

      • Meta says:

        yea we dealt with hip dsyplasia since birth so the hip thing is a major factor for us. But… we are making progress! going to post an update soon. :) Stay strong for Addy! Go mommy! :)

        Like

  2. Deb Harrison says:

    Lyndse, my dad gave me the “going to Paris, but ended up in Holland” story 20+ years ago. I will never forget it. It wasn’t the “intended” journey, but it helped make me who I am today.
    I don’t know if I’ve ever told you my story? My daughter, April, was born 4-7-88. She seemed to be a “normal” infant. But by 6wks, I noticed she never really made eye contact when I held her. This sent us into a whole battery of tests. I thought, “well, they’ll fix her eyes, give her glasses, whatever and we’ll be good.”
    well, I was wrong. Didn’t get the full diagnosis until she was 9mos old. She had a long list of disabilities, including: hydrocephalus, septo optic dysplasia (the nerve from her eyes to her brain was incomplete), abscense of the corpus collasum, etc. Group it all under cerebral palsy.
    She initially started out receiving therapy and intervention through the colorado school for the deaf and blind. At age 2, she started having seizures, was evaluated, and the hydrocephalus was getting worse, so she had a shunt put in place. She has since had about 10 more revisions, the last was in 2002, so she basically had 11 brain surgeries by the time she was 14.
    While I was in nursing school, she had OT, PT, and speech therapy 3x/week (ugh!).
    She did get SSI, starting at about age 3. When I finished school, I thought, well, I don’t need the SSI $, and I’m a nurse, so I should have good health insurance, right? NOT!!! I needed home health to come in and bathe her, change her, etc so I could work…my insurance would only cover 2 HH visits AFTER a hospitalization! So in order to get her what she needed, I had to make sure not to make to much $! crazy world, isn’t it?
    I kept April at home until she turned 21. She is now in a group home in Carthage. She functions at about a 2-3yo mentally, still wears diapers and needs basically total care. I hoped for more for her, but to be honest, she is happy with her life! I’m the one who always felt like she missed out on so much. It was a long, hard road.
    The worse part with her, is she can be very mean. she weighs more than I do, has a lot of upper body strength. My other children and I have all been hit, bitten, head-butted, etc by her. She acts out like a 2 yo, but hits like a grown up! Routine is very important to her, and they are able to provide that at the group home better than I was with my crazy schedule.
    Our kids do not have the same problems, but I can definitely relate with the journey. Just know you are not alone.
    This is another reading my dad sent me years ago:

    A Story contributed by Erma Bombeck

    This year, nearly 100,000 women will become mothers of handicapped children. Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angel to make notes in a giant ledger.

    “Armstrong, Beth, son, patron saint, Matthew.”

    “Smith, Marge, daughter, patron saint, Cecillia.”

    “Rutledge, Carrie, twins, patron saint…give her Gerard. He’s used to profanity.”

    Finally he passes a name to the angel and smiles, “Give her a handicapped child”. The angel is curious. “Why this one, God? She’s so happy.” “Exactly,” says God. “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

    “But has she patience?” asks the angel.”

    “I don’t want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off she’ll handle it.” “I watched her today. She has that feeling of self and independence that is so necessary in a mother. The child I am going to give her has his own world. She has to make it live in her world, and that’s not going to be easy.”

    “But Lord, I don’t think she even believes in you,” God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

    The angel gasps, “Selfishness? Is that a virtue?”

    God nods, “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman who won’t take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! I will permit her to see clearly the things I see…cruelty, ignorance, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day, because she is doing my work as surely as if she were here by my side.”

    “And what about her patron saint?” asks the angel, pen poised in mid air.”

    God smiles, “A mirror will suffice.”
    ===================================
    Take care, Ballew family!

    Like

Please Share Your Thoughts

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: