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The Hedstrom Family

December 10, 2012. A few weeks ago we had a scare. Jayden had an x-ray to check for scoliosis and the results showed a 14 degree curve. We were devastated! We quickly set up an appointment to meet with an Orthopedist. When we arrived for our visit, we did not have access to the original x-rays so we took a second set. These showed NO curve. Apparently you can get a false positive with poor posture but you cannot get a false negative. So we are in the clear. for now! Posted by Susan Hedstrom. June 18, 2012.

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December 10, 2012. A few weeks ago we had a scare. Jayden had an x-ray to check for scoliosis and the results showed a 14 degree curve. We were devastated! We quickly set up an appointment to meet with an Orthopedist. When we arrived for our visit, we did not have access to the original x-rays so we took a second set. These showed NO curve. Apparently you can get a false positive with poor posture but you cannot get a false negative. So we are in the clear. for now! Posted by Susan Hedstrom. June 18, 2012.

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The Hedstrom Family | thehedstromfamily.blogspot.com Reviews

https://thehedstromfamily.blogspot.com

December 10, 2012. A few weeks ago we had a scare. Jayden had an x-ray to check for scoliosis and the results showed a 14 degree curve. We were devastated! We quickly set up an appointment to meet with an Orthopedist. When we arrived for our visit, we did not have access to the original x-rays so we took a second set. These showed NO curve. Apparently you can get a false positive with poor posture but you cannot get a false negative. So we are in the clear. for now! Posted by Susan Hedstrom. June 18, 2012.

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thehedstromfamily.blogspot.com

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The Hedstrom Family: February 2012

http://thehedstromfamily.blogspot.com/2012_02_01_archive.html

February 5, 2012. Jayden turns three this month so we have been preparing for his first IEP meeting scheduled feb 10th. I have letters from all his therapists, his most recent progress report from his current preschool and some helpful handouts from the Pittsburg partnership regarding food security. We are very concerned about food security, as I think all Pws parents are. Much of our preparation has been setting our food rules. We have tried to make things as black and white as possible.

2

The Hedstrom Family: Provigil - Day 4

http://thehedstromfamily.blogspot.com/2012/06/provigil-day-4.html

June 18, 2012. Provigil - Day 4. We are giving Jayden 25mg of provigil daily. So far, we have noticed him having a lot of "good days". I haven't noticed anything outstandingly different but there have been small things that all add up. 1. He seems generally more compliant. When you ask him to do something, he surprises me by following instructions. Is this all the time? Posted by Susan Hedstrom. July 16, 2012 at 12:14 PM. Our son is out of bed sometimes up to 5x a night. Naps are hard and he is tired...

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The Hedstrom Family: September 2011

http://thehedstromfamily.blogspot.com/2011_09_01_archive.html

September 22, 2011. After our speech session at innovative, Dan went strait to management at Rady's asking why we weren't getting appropriate care. Long story short, we have a new ST and are combining ST and OT for a one hour session. The plan is to have one hour a week to start, then move to two sessions a week. Posted by Susan Hedstrom. September 13, 2011. They gave him prompts with a sucker looking stick, they massaged his arms and gave joint compressions. All these techniques WORKED! So here is the k...

4

The Hedstrom Family: December 2012

http://thehedstromfamily.blogspot.com/2012_12_01_archive.html

December 10, 2012. A few weeks ago we had a scare. Jayden had an x-ray to check for scoliosis and the results showed a 14 degree curve. We were devastated! We quickly set up an appointment to meet with an Orthopedist. When we arrived for our visit, we did not have access to the original x-rays so we took a second set. These showed NO curve. Apparently you can get a false positive with poor posture but you cannot get a false negative. So we are in the clear. for now! Posted by Susan Hedstrom.

5

The Hedstrom Family: Scoliosis

http://thehedstromfamily.blogspot.com/2012/12/scoliosis.html

December 10, 2012. A few weeks ago we had a scare. Jayden had an x-ray to check for scoliosis and the results showed a 14 degree curve. We were devastated! We quickly set up an appointment to meet with an Orthopedist. When we arrived for our visit, we did not have access to the original x-rays so we took a second set. These showed NO curve. Apparently you can get a false positive with poor posture but you cannot get a false negative. So we are in the clear. for now! Posted by Susan Hedstrom.

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pwsgulley.blogspot.com

Amazing Adventures of Ayden Jane: September 2014

http://pwsgulley.blogspot.com/2014_09_01_archive.html

Amazing Adventures of Ayden Jane. LIFE'S NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S ABOUT LEARNING TO DANCE IN THE RAIN. Tuesday, September 30, 2014. Fine Motor and Written Expression. It has been fascinating to watch Ayden Jane work on learning to express her thoughts on paper. I was amazed both by how hard this process is for her and her perseverance to stick with it until the very end. Monday, September 22, 2014. Ayden Jane loved it! I just love that Mrs. C has Ayden Jane do the written work li...

pwsgulley.blogspot.com

Amazing Adventures of Ayden Jane: May 2015

http://pwsgulley.blogspot.com/2015_05_01_archive.html

Amazing Adventures of Ayden Jane. LIFE'S NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S ABOUT LEARNING TO DANCE IN THE RAIN. Sunday, May 31, 2015. PWS Awareness month - wrap up. As this years edition of PWS posts come to a close, what is most on my mind is how much less I have to say about PWS at this point. Wait. Maybe it's not less as I have tons of information packed in this head of mine that has been acquired over the past 7 years. Maybe it's just different? The waiting to see which of the long list o...

pwsgulley.blogspot.com

Amazing Adventures of Ayden Jane: February 2015

http://pwsgulley.blogspot.com/2015_02_01_archive.html

Amazing Adventures of Ayden Jane. LIFE'S NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S ABOUT LEARNING TO DANCE IN THE RAIN. Saturday, February 28, 2015. Today was Saturday. It was a wonderful Saturday. It started like any other Saturday with Ayden Jane waking me up to ask if I could turn on cartoons for her to watch so she could cuddle up in bed for a bit before breakfast. (she still gets up early.) By 7:30 or 8 we were headed out to the kitchen and had a nice breakfast. While on the sideline I was talki...

pwsgulley.blogspot.com

Amazing Adventures of Ayden Jane: October 2014

http://pwsgulley.blogspot.com/2014_10_01_archive.html

Amazing Adventures of Ayden Jane. LIFE'S NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S ABOUT LEARNING TO DANCE IN THE RAIN. Tuesday, October 21, 2014. Busy - Life's Theme. This fall is racing by. Ayden Jane is doing great in school and she is participating in several after school activities. She is one happy, busy little first grader. Thursday she has her other day of swim team. Instilling the idea of daily exercise has been a great benefit to Ayden Jane. Since she is a routine kid she does not feel ...

pwsgulley.blogspot.com

Amazing Adventures of Ayden Jane: July 2015

http://pwsgulley.blogspot.com/2015_07_01_archive.html

Amazing Adventures of Ayden Jane. LIFE'S NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S ABOUT LEARNING TO DANCE IN THE RAIN. Thursday, July 30, 2015. Cranking up the Carnitine. So as usual, I was not satisfied with things going well. I needed to know if they could be even better! I did the math and decided I was going to go for a third dose of carnitine. It will put Ayden Jane at a total of about 46 mg/kg. Sunday, July 26, 2015. The added carntine has been just the ticket for Ayden Jane. Her energy le...

pwsgulley.blogspot.com

Amazing Adventures of Ayden Jane: Her Number

http://pwsgulley.blogspot.com/2015/07/her-number.html

Amazing Adventures of Ayden Jane. LIFE'S NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S ABOUT LEARNING TO DANCE IN THE RAIN. Sunday, July 12, 2015. Dealing with and discussing weight management with a 7 year old just seems wrong. We have taken to just having a scale out and Ayden Jane jumps on it from time to time. No schedules or charts or whatever. I get a kick out of how Ayden Jane calls her weight her 'number.'. Subscribe to: Post Comments (Atom). View my complete profile. Cranking up the Carnitine.

pwsgulley.blogspot.com

Amazing Adventures of Ayden Jane: January 2015

http://pwsgulley.blogspot.com/2015_01_01_archive.html

Amazing Adventures of Ayden Jane. LIFE'S NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S ABOUT LEARNING TO DANCE IN THE RAIN. Friday, January 30, 2015. A friend saw a piece that a fellow mom of a child with PWS wrote for The Mighty. The challenge was put out to answer this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? She challenged me to answer the same question. You will be frustrated beyond words at times. You will at times feel isolate...

pwsgulley.blogspot.com

Amazing Adventures of Ayden Jane: Perspective

http://pwsgulley.blogspot.com/2015/08/perspective.html

Amazing Adventures of Ayden Jane. LIFE'S NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S ABOUT LEARNING TO DANCE IN THE RAIN. Saturday, August 1, 2015. I watched Ayden Jane play at the beach today. More specifically, I watched her work crazy hard to keep up with twins one year older (who are very athletic). She rode boogie boards with them. The waves were big and the current strong but she kept at it. She was a part of the gang and she was very happy to be with them. Subscribe to: Post Comments (Atom).

pwsgulley.blogspot.com

Amazing Adventures of Ayden Jane: Carnitine Fiasco

http://pwsgulley.blogspot.com/2015/07/carnitine-fiasco.html

Amazing Adventures of Ayden Jane. LIFE'S NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S ABOUT LEARNING TO DANCE IN THE RAIN. Wednesday, July 15, 2015. For whatever reason, Ayden Jane needs a lot of carnitine and is very sensitive to the type and the dosage of it. You would think this would make me nearly paranoid with how I dose it daily. You would think. Since the CF provides physical energy it could very well be the culprit for her some what lower energy level recently. Also, I'm thinking it may be ...

pwsgulley.blogspot.com

Amazing Adventures of Ayden Jane: August 2015

http://pwsgulley.blogspot.com/2015_08_01_archive.html

Amazing Adventures of Ayden Jane. LIFE'S NOT ABOUT WAITING FOR THE STORM TO PASS, IT'S ABOUT LEARNING TO DANCE IN THE RAIN. Friday, August 21, 2015. Not the greatest picture but here she is. She is all set for second grade! New backpack, new lunch box, new glasses, and of course, new shoes - without 'yellows! Ayden Jane had a great first couple of days. As I type, she is sacked out on the sofa because going back to school was exhausting! Sunday, August 9, 2015. Is there a track to jump? She is different&...

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The Hedstrom Family

December 10, 2012. A few weeks ago we had a scare. Jayden had an x-ray to check for scoliosis and the results showed a 14 degree curve. We were devastated! We quickly set up an appointment to meet with an Orthopedist. When we arrived for our visit, we did not have access to the original x-rays so we took a second set. These showed NO curve. Apparently you can get a false positive with poor posture but you cannot get a false negative. So we are in the clear. for now! Posted by Susan Hedstrom. June 18, 2012.

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