Alyssa had moderate hearing loss, however this may change in time as she has very small ear canals. The loss isn't a major issue now as she hears us well because we're generally in close proximty of her. We'll follow things closely and in time she may need hearing aides or maybe not~time will tell.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. (Psalm 139:14) Being grown in faith because of my daughters diagnosis of Trisomy 18, a rare genetic syndrome. This is my reality of loving Alyssa and the impact she makes in our family. I praise God for showing us His grace and revealing our human frailty throughout this journey.
Friday, March 6, 2009
To hear or not to hear that is the question
Alyssa had an unsedated ABR hearing exam recently. This is what it looks like...the third visit was the charm; she slept like an old lady! 
Alyssa had moderate hearing loss, however this may change in time as she has very small ear canals. The loss isn't a major issue now as she hears us well because we're generally in close proximty of her. We'll follow things closely and in time she may need hearing aides or maybe not~time will tell.
Alyssa had moderate hearing loss, however this may change in time as she has very small ear canals. The loss isn't a major issue now as she hears us well because we're generally in close proximty of her. We'll follow things closely and in time she may need hearing aides or maybe not~time will tell.
Thursday, March 5, 2009
Working hard..a glimpse of OT and PT sessions
Alyssa and her OT Kris working on head control and neck strength. Alyssa getting some tummy time onthe ball. She likes this much better than floor tummy time.
Alyssa likes working on her big yellow ball. Bouncing while sitting up is one favorite things to do.
Alyssa sitting up with help from her OT Kris.
Alyssa has OT twice a month and PT every week. We work with her daily at home in addition to the services she receives from her early intervention team.
Alyssa is working with Fran, her phyiscal therapist. She is side lying to help her stregthen head control. 
Alyssa loves her work outs. We have noticed her gaining better muscle tone and stability with each passing week. She's a hard working little lady!
Mom's know all kinds of "tricks"...
Thought it would be interesting to show how I insert Alyssa's NG (nasal gastric) tube. Her NG tube is switched from her right to left side every two weeks. The NG has measurements on it, we pre-measure the length we need and mark it on the tube. This way when the tube is being fed through her nostril I know when to stop. This is one step of how we determine that the tube is safely placed in her stomach. On the day of the switch, I take the tube out in the morning and allow her to feed orally during the day and then place it back at night. She enjoys the break!
After washing her face,her cheek is wiped with a protective skin barrier, then deuoderm (flesh colored medical adhesive) is placed. We cut the deuoderm in the size and shape needed to best accomodate the tube; as well as not obstruct Alyssa's mouth, nose or delicate under eye tissue. 
While Alyssa is given a bottle or something to suck (this helps to allow for proper placement)the tube is positioned right next to her nostril, when she starts drinking the tube is quickly inserted into her nose and pushed down to her stomach. 
After placing the tube, tegaderm ( a clear adhesive tape) covers the tube to keep the tube in place. I leave the paper boader on the tegaderm until I do the next check of ensuring proper placement in her stomach. This is done by using a 10cc syringe to draw out 1cc of stomach contents. Then a Squirt of the contents on litmus paper will confirm placement. The paper will change color and the acidity level will indicate if the tube is properly placed. If it is too acid the tube has gone to far (this has never happened). If the tube would go anywhere other then her stomach we have signs to look for also, thanks to CHOP (Children's Hospital of Philadelphia) we've been well trained and haven't had any issues with improper placement.
Once knowing that the tube is placed successfully, the paper boarder is taken off and we are done!
Alyssa fusses a little when having this done, but with practice I've gotten faster and it minimizes the stress for all involved! We are looking forward to April when we say goodbye to the NG tube...next trick managing a G-tube.
After washing her face,her cheek is wiped with a protective skin barrier, then deuoderm (flesh colored medical adhesive) is placed. We cut the deuoderm in the size and shape needed to best accomodate the tube; as well as not obstruct Alyssa's mouth, nose or delicate under eye tissue. 
While Alyssa is given a bottle or something to suck (this helps to allow for proper placement)the tube is positioned right next to her nostril, when she starts drinking the tube is quickly inserted into her nose and pushed down to her stomach. 
After placing the tube, tegaderm ( a clear adhesive tape) covers the tube to keep the tube in place. I leave the paper boader on the tegaderm until I do the next check of ensuring proper placement in her stomach. This is done by using a 10cc syringe to draw out 1cc of stomach contents. Then a Squirt of the contents on litmus paper will confirm placement. The paper will change color and the acidity level will indicate if the tube is properly placed. If it is too acid the tube has gone to far (this has never happened). If the tube would go anywhere other then her stomach we have signs to look for also, thanks to CHOP (Children's Hospital of Philadelphia) we've been well trained and haven't had any issues with improper placement.
Once knowing that the tube is placed successfully, the paper boarder is taken off and we are done!
Alyssa fusses a little when having this done, but with practice I've gotten faster and it minimizes the stress for all involved! We are looking forward to April when we say goodbye to the NG tube...next trick managing a G-tube.
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