Our Blessing Named Jesse
Sunday, October 26, 2008
New Teeth
Tuesday, October 7, 2008
Done with Heart Cath
Everything went well. The tests showed he has borderline/mild pulmonary hypertension when on room air. So the doctors would say he is "controlled" - meaning that the medication has the hypertension under control. He responded well to oxygen and nitric oxide which is good. If they don't respond, that means that medication doesn't work and wouldn't help him. That would mean there was permanent damage to the blood vessels - so it is good that he is so "reactive". They are once again increasing his sildenafil dose and would like him on the oxygen most of the time - ok for short periods off.
The bronchoscopy showed that his lungs and airways look good. They also will run tests on fluid from his lungs to check for bacteria, viruses, and lipids. If there are lipids that would mean he is aspirating formula when drinking.
Thank you for all of your prayers. It was a nervous time for me, and I am glad it is over. I am not sure when we will be getting out of the hospital, but it may be later this afternoon.
Kristan
Bless the LORD, O my soul,
and all that is within me,
bless his holy name!
Bless the LORD, O my soul,
and forget not all his benefits,
who forgives all your iniquity,
who heals all your diseases,
who redeems your life from the pit,
who crowns you with steadfast love and mercy,
who satisfies you with good
so that your youth is renewed like the eagle’s.
Psalm 103:1-5
Monday, October 6, 2008
1st Time to Sit Up
We are getting ready to leave to go to Denver for the heart cath tomorrow. We have to be at the hospital at 6:00am, but I think the actual procedure is at 8:00am. They will also be doing a bronchoscopy.
Cardiac catheterization (heart cath) is the insertion of a catheter into a chamber or vessel of the heart.
See http://www.pulmonary-hypertension-treatments.com/heart_catheterization.html for a description of the procedure.
Bronchoscopy is a test to view the airways and diagnose lung disease. A bronchoscope is a device used to see the inside of the lungs.
We will let you know as soon as we know any results.
Kristan
Saturday, October 4, 2008
Friday Appointments
At noon we went to the pulmonologist. It wasn't much of an appointment. They thought he was doing great right now and agreed that the inhaled steroid (Flovent) should be continued at least until next spring. Dr. Kerby will perform the bronchoscopy on Tuesday after the heart cath so that she can look at his lungs. Then she will decide if he needs any further testing or treatment.
So, we have to be at the hospital at 6:00am on Tuesday, and will hopefully be out that evening (but are supposed to pack an overnight bag in case he has to spend the night.)
Kristan
Thursday, October 2, 2008
Anna and John J. Sie Center for Down Syndrome
August 4, 2008
The Children’s Hospital Announces the Establishment of the Anna and John J. Sie Center for Down Syndrome
Center will be first of its kind in the Rocky Mountain region
Photo courtesy of The Denver Post
Related News
New Center Aims to Improve Living with Down Syndrome (The Denver Post)
Sie Family's Gift for Down Syndrome Center at Children's Announced (Aurora Sentinel)
The Children’s Hospital announced July 30th the receipt of a multi-million dollar gift from the Anna and John J. Sie Foundation that will go toward the establishment of the Anna and John J. Sie Center for Down Syndrome (the “Sie Center for Down Syndrome”). The Sie Center for Down Syndrome will be the first of its kind in the Rocky Mountain region.
The gift includes a $2 million endowment and up to $175,000 per year for ten years. The announcement of the Sie Center for Down Syndrome marks the beginning of a two-month celebration to raise awareness and support for programs that are helping make Denver the national leader in health care and research for people with Down syndrome. The Sie Center for Down Syndrome at The Children’s Hospital will provide medical care to children with Down syndrome, hire and mentor a medical “dream team,” provide up-to-date information on Down syndrome to women who have received a prenatal diagnosis of Down syndrome and participate in collaborative ground-breaking clinical trials.
“We are committed to hiring and inspiring a comprehensive team of national experts who together will make tremendous strides in caring for children with Down syndrome,” said Jim Shmerling, DHA, FACHE, president and CEO, The Children’s Hospital. “Ultimately, we hope to help change the paradigm of how individuals with Down syndrome are perceived by society.”
“The Sie Center for Down Syndrome will provide, locally and globally, the highest quality clinical care, therapeutic development including physical, occupational and speech therapies, medical care, societal education and advocacy in the pursuit of its mission,” said Stephen R. Daniels, MD, PhD, pediatrician in chief at The Children’s Hospital. “Our experts from a variety of fields will have the opportunity to catch medical issues early so the trajectory for children with Down syndrome will be greatly improved.” Daniels is overseeing a national search for a dedicated clinical care center director.
“One of the key goals of the Anna and John J. Sie Foundation is to make Colorado the best place for people with Down syndrome to live,” said Michelle Sie Whitten, executive director, Anna and John J. Sie Foundation. “It is our belief that innovative and effective private-public-government collaboration in service, intervention, and research is required in order to achieve that goal. Once achieved, the expectation is that Colorado will serve as a template for other states, regions or even countries in terms of successfully tackling issues related to Down syndrome.”
Anna Sie continued, “When our granddaughter, Sophia, was born we had no idea what an uphill battle children with Down syndrome can have in our society. Low expectations and poor health are at the root of the problem. That’s why excellent medical care for these children who can then sleep better, do well at school and contribute on so many levels to society and our community is at the heart of what we anticipate this Center will do. We are thrilled about the prospects.”
With a shared vision of offering the best clinical care for children with Down syndrome in the nation, the gift from the Anna and John J. Sie Foundation has already enabled The Children’s Hospital to recruit Patricia Winders, the world’s leading physical therapist specializing in Down syndrome. Winders is the author of Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals¸the only comprehensive physical therapy work that provides essential information for both parents and professionals. Recruiting Winders, who joined The Children’s Hospital in December 2007, was the first step toward fulfilling this vision.
At the July 30 press conference, 5-year-old Sophia Whitten, who happens to have Down syndrome and is the granddaughter of Anna and John J. Sie and daughter of Michelle Sie Whitten and Tom Whitten, had the honorary distinction of cutting the ribbon that symbolizes the hope and excitement surrounding the creation of the new comprehensive Sie Center for Down Syndrome.
About the Anna and John J. Sie Foundation
The Anna and John J. Sie Foundation supports the sharing of knowledge amongst peoples and cultures throughout the global community, with emphasis on Down syndrome, education, media, business, and technology. The foundation is a supporter of The Children’s Hospital, the University of Colorado’s “The Sie Family Down Syndrome Break-Through Research Initiative,” the University of Denver’s Institute for Sino-American International Dialogue, the School of Science and Technology, the Denver Art Museum, the Starz Film Center, and numerous other civic, social and educational institutions.
http://www.thechildrenshospital.org/news/pr/2008news/Sie_Down_Syndrome_Center.aspx
Linda Crnic Institute for Down Syndrome
The University of Colorado has announced a $34 million pledge from the Denver-based Anna and J. Sie Foundation to establish an institute designed to help eradicate the ill effects associated with Down syndrome.
The new Linda Crnic Institute for Down Syndrome at the University of Colorado Denver’s Anschutz Medical Campus will be the first facility to comprehensively address Down-related basic research, clinical research, and clinical care. The University of Colorado Denver, the University of Colorado at Boulder, and Children’s Hospital in Aurora have each committed space, personnel, and overhead for the institute, which will recruit top researchers inside and outside the field of Down syndrome.
Within ten years, the institute is expected to grow into a $150 million organization with a staff of more than one hundred and sixty people. "One of the focuses of the [institute] is to better understand ways to improve the cognitive ability of people with Down syndrome," said Dr. William C. Mobley, the institute’s executive director. "Through research and improved care, we can make it easier for them to go to school, make friends, have jobs, get married, and ultimately live independently."
“Global Research Institute at University of Colorado Denver Aims to Eradicate the Ill Effects Associated With Down Syndrome.” University of Colorado Press Release 9/22/08.
http://foundationcenter.org/pnd/news/story.jhtml;jsessionid=WQ3NNCJN3XDBJLAQBQ4CGXD5AAAACI2F?id=228400027
You can read more about the new "institute" at these links:
http://www.9news.com/news/local/article.aspx?storyid=100262&catid=346
http://www.ascribe.org/cgi-bin/behold.pl?ascribeid=20080922.125250&time=13%2032%20PDT&year=2008&public=1
http://www.uchsc.edu/som/crnic/ajsfoundation.htm
Thursday's Appointments
This afternoon we met with a neurologist. Jesse's EEG was normal, and after reviewing the video she felt Jesse's episodes are not seizures. During the appointment he actually had a few short "episodes" so she got to see first hand what they look like. We aren't really sure what they are, but seem to be just a silly baby thing. She will talk with Dr. Ivy tomorrow and hopefully he will think it is ok to go ahead with the heart cath next Tuesday.
We are spending the night here in Denver and Jesse will have his 1 year pictures taken in the morning, and then go to see a pulmonologist. Hopefully that appointment will be as positive as today's were.
Kristan