Wednesday, April 27, 2011

DIY arm restraints - The "Snug Hug"

Seriously, who wants to thing about wrapping your kid in arm restraints?  For what ever reason.  But the fact is, for her own safety and my own piece of mind, at least once a day Miss Maaike is strapped down so I can take care of her trach needs.  Welcome "snug hug."

I graduated college in linguistics so I am a firm believer in "a rose by any other name" would not smell so sweet.  I think that what we call and the way describe things makes a big difference in the way we perceive things. Every parent of a special needs child knows this love hate relationship.  You need the "label" or diagnosis to get help for your child, but you don't want those who help you to see your child as the diagnosis and not look pass the label.  In the same, but obviously lesser light, I don't want to think about binding my child down in arm restraints day after day to manage her care, but I can accept the thought of hugging her snuggly with beautiful fabric to give her the love and care that I need to.

This is a quick and easy project, suitable for beginner sewers. The Snug Hug could also be used to swaddle newborns underneath beautiful blankets or anything else you might dream up.  Let's get started.

The Snug Hug
1/2 yard of medium to heavy weight fabric
21 inches of sew-able Velcro

Step 1
Measure the circumference of your child where you want the Snug Hug to fit.  Make sure your are measuring them as they would fit in it with their arms down at their side.  Add 8 inches to that measurement, this allows for future growth.

Step 2
Cut your fabric, folded lengthwise in half, with the measurement from Step 1 by 8 inches down (folded) or 16 inches open. Maaike's fabric was 32 inches by 8 inches (folded)

Step 3
With right sides together sew your long rectangle  around the 3 open sides with a half inch seem allowance, leaving a 3 inch opening at one end. Clip off the seam allowance at the corners.

Step 4
Pulling your fabric through the 3 inch opening, turn you fabric right side out and iron it.

Step 5
Top stitch the 4 sides of your fabric at 1/4 inch seam allowance, this will close up your 3 inch opening.

Step 6
 Cut a 6 inch strip of the fuzzy side of the velcro and sew it to one end of your fabric so that it lays vertically on your rectangle.  I used the "blind hem stitch" but you could use a straight stitch or zigzag or almost any stitch.

Step 7
Flip your fabric over so that you cannot see the velcro you just sewed and lay two 10 inch strips of the tacky side of the velcro on the opposite side and end as the fuzzy velcro.  These two strips will lay horizontally on the rectangle.  Now sew them in place

Step 8
Roll up your Snug Hug how you wish to store it to test where you will place your last 2 inches of tacky-sided velcro to maintain closure and sew it in place.

Ready for hugging.

Tuesday, April 12, 2011

She is sunshine in my soul

Over the last 6 months, as Maaike has been home bound, my husband Sid and I have traded off Sundays for church.  Its not ideal, but it has its perks too.  The unwritten rule has become that whom ever is staying home with Maaike that week is in charge of making dinner.  Before this ritual began Sid had three dinners in his repertoire:  fried rice, tri-tip steaks, and grilled chicken, each dish being seasoned to perfection.  But it is now not uncommon to find Sid on a Sunday morning perusing the internet for his next master recipe.  But this last Sunday that was not the case.

Sid's oldest sister is an ER nurse and last weekend she and her family moved into a house about 5 minutes away.  She so kindly offered to watch Maaike for us so that we could go to church together.  It was such a special treat.  We got several stares from those who know we can't attend together and I'm sure they were wondering where Miss Miaake was.  We used to sit on either end of the pew so as to corral the kids, but this time the kids were pushed to the side so that we could sit together.  It was sweet...but still a little bitter...we were still not complete.

The service was nice, but the tears came during the closing hymn.  When Sid saw what the selection was he nudged me and whispered, "Of course, it had to be this song."  I had no idea what he was talking about.  He then pointed to the lines of the second verse, "And Jesus listening can hear the songs I cannot sing."  (LDS Hymn 227).  Then the tears began to freely flow.

I didn't know that Maaike would lose her voice with the trach.  Tracheostomies are placed in the trachea below the voice box preventing airflow to cross over the vocal cords.  Another trach mom had clued me into this before Maaike's tracheotomy and so I asked our ENT about it.  He assured me that Maaike would have a one way valve that would all her to vocalize on the exhale, like Christopher Reeves.  Having never been through this before I assumed that it was a different kind of trach and Maaike would therefore keep her voice.  I wont get into it now, but I was wrong to assume.  When I first saw Maaike post surgery and she was back arched screaming without any sound coming out I became frantic that either something went wrong in the surgery or they placed the wrong kind of trach.  The fact is that the one way valve that allows vocalization is on a small "button" (called a Passy-Muir valve) that is place on the end of the trach and we wouldn't even see one for many months and are still only able to use it for minutes of the day.

Life with a speech-less child equals constant watching.  I watch her on a video monitor as she sleeps because I can't hear her cry when she wakes up.  She is never left alone because if I can't see her face I don't know what is going on.  There have been times when she was crying in my arms, but until I looked down at her I had no idea.  As time has gone on I have gotten better at noticing the changing sounds of her breathing.  She sleeps at the foot of my bed and before she is even fully awake I'm up because the pace of her breathing wakes me up.  I still can't tell the difference between crying and laughing without looking at her, they make the same static shushing sound, but as she has gotten stronger she has been able to force air past her trach and make little squeaks.  We have started signing with her and plan to give her language and communication in what ever way we can.

But regardless of notes sung for ears that can hear, I am thankful today to believe in a God who listens with His love to the sweet songs of a very little girl who audibly cannot sing.