Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, February 17, 2013

Teamwork - 17 month PT Update

Well what does one do while #1..awaiting important and nerve-wracking medical news.... and while #2..having a personality that makes such waiting absolutely unbearable? Well, you keep busy.. that's what you do.

For me, it's not that hard to do.  My everyday life does pretty well at keeping me busy.  Between 5 kids, Meagan's needs, teaching music lessons, tending to an over-zealous (yet aging) senior Labrador, and having a husband who is working hard to support us (meaning most housework and clothes and toys that need cleaning falls on my shoulders...) it is all certainly plenty to pass my hours on a daily basis.  On top of the "usual" (which is my short term for the previous list of daily duties), I also have been working with Meagan tirelessly each day on her PT every spare second we get.  I realized a good update on what she is doing lately in therapies would be a positive thing to write about...(I also realized I hadn't updated that aspect of her development in quite a while)... so here we go.  Bear with me.. it's a bit long. But if you read through to the end I guarantee you will be smiling. :)

Seriously mom... not another picture!

I have always worked with Meagan throughout the weeks on her PT, but she always had heavy time periods where she would sleep, be sleepy, or have seizures...so because of all that, our PT time was sometimes limited, or not at all depending on how her day was.  Being that we have been lucky with her mood and seizures as of late, I have been taking full advantage of the extra time we have.  Meagan has been doing really well with playing on her side.  She even has started to roll over to her belly, but she will immediately return to her back. We are slowly working on rolling all the way over, and hopefully sometime in the near future we will get there.  She just has to realize that she can also get off her belly by continuing to roll the same way instead of going back the way she came.

Sitting was one of the other goals we set with Meagan's EI program this year.  Now that we have had these few months of health with her, and also now that her shunt setting seems stable, she is a lot happier with positional changes.  This has allowed me to work with her many more minutes at a time on supported sitting.  Another large factor in this improvement is her head control.  It has really taken off especially in the last month.  Now when I hold her on my shoulder she can lift her head off for a few seconds and look around.  Also, when you hold her in a sitting position, her head can bob forward and she can catch its weight - and even hold it to look around for a bit.  When she reaches her limit, we know because she simply slowly collapses over her legs and folds herself in half.  Then I know head control practice is finished :)

Passed out after therapy!

Because of Meagan's new head control, I have been able to try and get her to sit supported with things other than myself.  She did well for a while working with me (and her PT) but she has learned the practice of arching back - and forcefully.  Of course we don't let her slam onto the floor because of her head and her shunt.....sometimes I wonder if she knows this because each time she slams backwards and we catch her, she usually looks to the side as if saying "What? What happened? I didn't do anything...."  or even better she will look right at us and clap as if saying "Yea, this is what I wanted ...I'm the boss!"....

We have implemented a few new supported sitting positions for her so she isn't trying to flail herself backwards into a person.  One of these is to work with her on a chair or couch so we can prop pillows around her and let her do some work... not having a person right behind her so she won't arch.  She seems to like this a little bit, and it's even allowed me to sneak in some time with her arms.  She HATES putting weight through her arms.  (And I use hate in the full sense of the word.) So being on the chair allows me to prop her at an angle with pillows, "forcing" her to use an arm to lean on and therefore put a little weight through it.

As you can tell, she just 'loves' this....(enter sarcasm)..

We also decided to purchase a playnest about a month ago.  It's basically a big blown up pillow that looks like an inner tube.  It allows Meagan to sit with some support inside that hugs her back... but if she flails backwards I can actually let her go.  The soft tube sides catch her fall and it lets her see that no one is going to catch her when she decides to have an attitude.  I give her a little support and we work on strengthening her trunk and increasing her head control time.  It's worked fairly well so far.  (Although sometimes she just prefers to lounge.)

Supported sitting in her nest..it gives her support up to her middle back and I help stimulate her upper back muscles by walking my fingers along her upper back and lower neck.  She can last like this for about 15 seconds and then an additional 15 seconds as she folds over when she tires out.

Starting to get tired....relying more on the nest and mommy's hands...

This is her "ok mom, I'm seriously done" face. We let her lay down after this.  30 seconds seems like a short time, but to her it's a lot of work!!

Something else we have continued with Meagan that really seems to help is her compression massages.  Basically, we hold her limbs (arms, legs, hands, feet) one at a time and with one hand, massage up and down that particular area with deep squeezes.  It helps stimulate her muscles, and also cuts down on some of her major sensory issues with her arms and legs.  There are some days she lays there and seems to enjoy the pressure, and other days she fights it.  Her sisters will sometimes help distract her so we can make sure to get her massage finished.  She definitely couldn't do a lot of what she does without her sisters.  They have been such great helpers and have learned so much themselves. Teamwork is key in this family!

Compression massage time! Anna and Kaitlin tackle either arm with compression massage while Maura adds some distraction!

Reilly helps Meagan work on sitting up

Maura helps Meagan with her bath

Overall we have seen huge improvement in Meagan's abilities the last few months.  If we can keep working on her head control getting more consistent and for longer periods of time, and keep strengthening her trunk with the supported sitting, we may be able to see her sitting alone sometime this year.  I'm proud of how hard she has worked.  It is so difficult for her to even do the smallest things.  Each time she lifts her head, and holds it just a few seconds longer, or balances in her playnest or between pillows to try and sit, I thank God for the small steps she has been able to take.

This progress is very hopeful and exciting, but I try to enjoy the moment of what she is accomplishing.  This isn't to dampen her improvements, but to just keep things in perspective and truly appreciate what she is doing at that time.  I often get questions (and completely well meaning questions) from people about these new things... "Does this mean she will sit up soon on her own? .... does this mean she will be crawling this year?...."  The answers are still "I don't know."  The truth of the matter is, Meagan will continue to do what Meagan does, on her own time.  We are thrilled about her recent strides in strength and stamina, and just try to take a day at a time.

I can't help but smile every time I look at Meagan. She has really brightened my perspective, especially this weekend.   I love how she has brought us even closer together as a family.  Each time she takes a baby step forward, it teaches us patience, gratitude, and more importantly teaches my girls how to work as a team.  We are excited to see what the coming months hold for her. Most of all, though, we are continually happy she is here with us.  We are thankful she continues to teach us life's lessons we sometimes let slip by...... perseverance...hope...and most of all unconditional love.   And that's something we can all smile about.


  1. Love love love those pics of her with her sisters helping her!! What a blessing for her to have all that love and support surrounding her! And I love her expressive little face! Thanks for the smile tonight!! :)

  2. Wow what is that huge doughnut type thing and where could I get one?? I would love to have one for my son when we start working on sitting