Monday, June 20, 2011

Hat Free!

Before I go forward on this post, I just want to give a huge shout out to my Dad and to my husband for being such wonderful Fathers.  Happy Father's Day!  This year I didn't do a post for Father's Day so I wanted to make sure I got a shout out to them.

Now, onto the hats!

As you know, Emma has a profound hearing loss in both her ears - she is deaf.  In addition to being deaf, she also has very delayed motor control for her head and her body.  When her first cochlear implant was activated at the age of 14 months it was ridiculously hard to keep the magnet on her head.  And, if the magnet is not on her head she cannot hear at all.  I made it my mission to keep the magnet on her head for all waking hours and it was a losing battle - all the tape, headbands, etc. would not keep the magnet on her head.  We battled this for quite a while and found that the magnet would stay on her head the best when she wore a cap (pilot cap ordered from Hannah Anderson) and even better when I put toupee tape on the magnet and covered it with the cap.  When her second cochlear implant was activated at the age of 2, it was pretty much impossible to keep both CIs on her head with just the tape and so we continued to use the cap.  When we were at home we tried to keep the cap off as much as possible because: 1.)  Emma hated wearing the cap and, 2.)  I just loved to see her head and hair all done up without a hat!  But, really, to keep the magnets on her head so she could hear we had to use the cap or resign ourselves to putting the magnet back on her head the 1000x/day that it would fall off.  Remember, she doesn't have the best head control so her head was mostly always touching a seat or the floor or something else and the magnet would easily rub off from Emma turning her head back and forth.

This summer we finally have a handle on keeping the CIs on Emma's head so she can hear during all (or mostly all, they do occasionally fall off!) waking hours.  And while I would gladly keep putting a hat on Emma's head if it was the only way that she would be able to hear, I'm happy to say that we have just recently been able to go Hat Free!

A few things have happened to make it easier to keep the CIs on her head.

  • Emma has better head control.  Although I know her PTs think it's not so great I'm thrilled with how far she's come with head control and know that it will only continue to get better! 
  • Her head is not always rubbing against something.  She is commando crawling these days and if I lay her down on her back on the floor, she will have rolled over to her belly within seconds so she can get moving.  Emma also loves walking in her gait trainer that does not have a head rest for her and her ChildRite chair (the big Bumbo seater she uses) doesn't hit her head, either.  
  • Emma is using the Nucleus 5 CIs with the compact rechargeable battery and it makes the unit much smaller and easier to keep on her tiny ears
  • Our awesome audiology team found some new gear that helps keep the CIs on her head and I am so very grateful for them.

I'm completely delighted that we haven't had to use the pilot cap for the last few weeks!  Even at school we are able to tape the magnet on her head and use the ear gear to keep the CIs on her head with only a few touch-ups to the tape each day.  And I feel like things have gotten so much easier because, really, keeping CIs on a child with cerebral palsy is not for the faint of heart!

It's wonderful to see Emma - her beautiful blue eyes, her beautiful hair all done up in a matching ponytail, her huge smile - without her hat.  I can't even put into words how great it makes me feel.  It really is the little things in life that can make us appreciate everything a little bit more.

2 Comments from readers:

Sherry C said...

Sweet love the pony tails too.

Janet "Grammy" Harrold said...

Emmas head control in this picture looks absolutely great! You asked about Conductive Education. We have only gone for one 4 week block so far, but we learned so much in that 4 week block, I really wish my son would move his family to Michigan and send Hailey regularly, unfortunately the jobs are slim picking, that scares him, so we hope to go for another 4 weeks in October, not sure we can come up withh the money so quickly, maybe January is more realistic. I'm not sure if they have a Nov/Dec block you would have to check with them. Also you have to start by sending a video of Emma to them, I believe they would be able to help Emma, but they would have to be the judge of that, not everyone is accepted. It cost about $2400.00 if you are not a resident of Michigan, but $1700.00 if you are. Other expenses include living expenses for 4 weeks we stayed at the ronald macdonald house)they were great and I posted about that as well. Plane fare, rental car etc. I think it cost us between 5-6000. for the entire trip. There are other centers in Florida and Canada etc. But we did a lot of research and liked this one the best. If I can be of any further help, please do not hesitate to contact me. I hope you do it. We talked about it for 2 years and were sorry we waited so long. The younger the better! Good luck!!