
Daily Updates
5/17/2012
Thursday, 17 May 2012 20:18 | Author: Administrator
Aedyn had a good report at the University of Iowa. His hip continues to improve. It's still not quite where it needs to be but because of the progress, he is still able to avoid surgery and a cast at this point. The doctor would like him to continue wearing his brace at night for 6-8 more months to see if this will help the hip to form correctly. A big focus these days is Aedyn's physical therapy. He continues to work on sitting and trying to roll. He actually rolled from his tummy to his back for the first time!!! Aedyn's physical therapist is working on trying to get a "stander" that is small enough for his little size. This will allow him to be secured in a standing position for brief amounts of time to help his body get used to that position and also work on being more comfortable bearing some weight on his legs.
Aedyn has an appointment with his nephrologist (kidney doctor) this week and will have an ultrasound of his kidneys and bladder.
We continue to work through the LONG and COMPLICATED process trying to get Aedyn on one of the "waivers" that will help us be able to access more resources for him. Pray that this will happen soon.
Getting his hips checked
Team Aedyn t-shirts
Aedyn and his Storyboard March for Babies - the Littlest "Walkers" for Team Aedyn
Aedyn in his cute bibs Riding his Caterpillar (with some help) I Think I Might Like Coloring! I Love my Puppy
Playing in his Bumbo
Working on Sitting I Like my Tiger Xylophone
More Progress with Tummy Time
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4/26/2012
Friday, 27 April 2012 21:21 | Author: Administrator
Aedyn had his eye appointment last week. His eyes look good, even the possible issues with vision that sometimes occur with Emanuel Syndrome. She is a little concerned that he might have a bit of a lazy eye issue with his left eye. She wants to check that again in 3 months.
I'm so big! Making progress! Yay! Getting eyes dilated at eye dr.
4/11/2012
Thursday, 12 April 2012 20:13 | Author: Administrator
Aedyn enjoyed Easter! We enjoyed Easter this year too - it seemed more like his 1st Easter since last year he had only been out of the NICU for 7 days at Easter and we were still very overwhelmed trying to learn how to take care of him and deal with all his equipment. It's amazing to see how far we've all come in a year! Physical Therapy - Aedyn is working hard on his gross motor skills in physical therapy. He is trying to learn to roll, working to gain arm strength and be able to stay propped up on his arms/elbows during tummy time, continuing to work on sitting, and starting to practice weight bearing on his legs for very short periods of time and with support.
Occupational Therapy - Aedyn is also building some fine motor skills. He is doing more with his hands and grabbing and banging toys more. There are many, many things that his OT team suggests to us that will help him continue to focus on these skills.
Feeding - Aedyn's feeding team has been working with us regularly. He is doing really quite well with his feeding, but is delayed in some ways. He has gained many skills with his feeding and not had some of the difficulties that we had originally anticipated. But with Emanuel Syndrome, there are still several issues at play that effect his feeding skills. Aedyn's feeding team spent a lot of time this week doing another evaluation to determine his specific issues at this point as they develop a feeding plan for him. Going very slowly with their plan for oral motor therapy is important with some of Aedyn's issues. It's important not to cause him to aspirate (a common issue with ES) or to introduce any movements/vibrations that could trigger a seizure (also a possible issue with ES). Aedyn's first step with his oral motor therapy is exposure only to a "Duo Spoon" that provides sensory variation for children who need sensory support. He likes his Duo Spoon a lot so that is a good start!
Next week we have several appointments: Aedyn will get his 12 months shots (that he was not able to get at his 12 month check-up since he was having the BAER test under anesthesia 2 days later). He will also see the pediatric ophthalmologist to get another eye exam to see if any changes have occurred. So far there have been no issues with his vision. We pray this continues to be the case. Aedyn will also see his ENT now that we have the results from the BAER test to discuss what options might be best for his situation.
We also had Aedyn's 1 year pictures taken recently and got those back. It's another great way to see how far Aedyn has come!
![]() Happy Easter!
![]() Happy Easter Basket :)
Physical Therapy - propped on elbows
![]() Aedyn with his Duo Spoon
![]() Talking on the phone to Grandpa
![]() 1 Year Pics 3/31/2012
Monday, 02 April 2012 01:29 | Author: Administrator
It's been a great week!!! 3) Aedyn had his BAER test this week - a special hearing test that measures his brain's response to sound. For him, this had to be done in surgery with anesthesia and the ability to intubate him if necessary. He did great and didn't require intubation. We just got the results from that test. It shows that he has normal to near normal hearing in his right ear! For high and middle pitches, the audiologist was able to get a reading of 10 (0-20 is considered normal) and for low pitches she was able to get a reading of 30 (but this is the best they can usually get in the operating room because of all the background noise from machines, etc.) She said that they will not pursue a hearing aid for this ear because his hearing is too good! For his left ear (the one with no ear canal), she was able to get bone conduction (the conduction of sound to the inner ear through the bones in the skull) down to near normal (30). This would indicate that the cochlea and inner ear are functioning fine and there is evidence that he could have fairly normal hearing in his left ear if we can get the canal opened up. We are anxious to visit with his doctor about these results and see what options are available. For 6-7 months there was no evidence that Aedyn had ANY hearing. Again these test results were even more than we were hoping for! We are thrilled with how things have improved. We are so thankful for how God has been working in Aedyn's hearing!
It has been a very encouraging week and we are so grateful for the many reminders of how God continues to work in Aedyn's life!
The big birthday boy
Lounging in my new chair
Talking on the phone to Aunt Carol
Aedyn's first fingerstick
Getting hooked up for his EKG
Trying to help the tech with his ECHO
Ready for my BAER test/Arriving at hospital
But it's VERY early!!
Cuddling with Daddy in the pre-surgery room
Monkey helps a little boy waiting in pre-surgery
Being wheeled to us in post-op in a tiny hospital bed
Awake in post-op after getting his IV out - quickly back to being himself : ) |


















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