Our Blessing Named Jesse

Jesse Quintin was born September 26, 2007, the much-loved fifth son of Kristan and Chad. He was diagnosed shortly after birth with AV Canal Heart Defect and Down Syndrome. Thursday, January 10th, Jesse had surgery to repair his heart defect. Friday morning he suddenly went into cardiac arrest. After 45 min. of CPR he was attached to life support. By God's healing hand his heart started to beat again and he came off life support on January 13. We created this blog to keep everyone updated.





Sunday, October 26, 2008

New Teeth

Sorry for not updating for so long. We had a busy week last week. Aunt Kim was here with her 4 children, so the 8 cousins had a fun week on the farm and at Grandma and Grandpa's in Sterling. We did a lot of art projects throughout the week, culminating with an "art show" on Friday so everyone could see their creations. Tuesday we visited the Overland Trail Museum and then had a delicious "Dinner of Thanks" with Grandma and Grandpa, complete with turkey and all the fixings.
Jesse can now get into the sitting position easily, and can pull up to standing with a little assistance. We have worked a couple times on stairs, but it is a lot of work. The big news is that he now has 2 teeth on top, for a total of 4. He is making the transition from formula to cow's milk. He is starting to drink a little from a sippy cup. He likes riding in the backpack, and we had a fun time going to the Butte with all the kids on Friday afternoon. Jesse really likes cats, especially our new little kitten Calli, and he is quite gentle with her.
While Kim was here, she came down with a cold and almost lost her voice. Sam came down with a fever, but seems better today. Jesse has a runny nose and cough. And I have slightly sore throat. I hope we don't all catch it.
After our break, we will be getting back to school tomorrow.
Kristan

Tuesday, October 7, 2008

Done with Heart Cath

After about a 2 1/2 delay due to an emergency cath that had to go ahead of Jesse, Jesse is now done and asleep. We are leaving him alone so that we don't wake him, but did get to sneak a peak at him. He looked good.

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

Last night Jesse got up into the sitting position all by himself while crawling around in the kitchen. It was very exciting!!!

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

On Friday, Jesse's 1st appointment was to have his pictures taken at Penney's. It went great and the photographer took so many good pictures I couldn't decide what to order. I had selected 19 poses that I liked. Now you they offer the option to buy a CD with all the pictures - so that is what I did. That way I can get as many printed as I want, and make a slide show, etc...

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

Sie Foundation Commits $34 Million for Down Syndrome Research

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 morning Jesse and I drove to Children's Hospital for Jesse's first appointment with Patricia Winders, a Physical Therapist who recently came to Denver from Maryland to join the new "Linda Crnic Insitute for Down Syndrome". She is the author of the book: Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals. She has been exclusively working with children with Down Syndrome for many years (I think since 1981). Her focus is on teaching the children how to do skills correctly (such as getting into sitting position, pulling-up, standing, etc.). This prevents future problems. I really enjoyed meeting with her and will be implementing her suggestions at home. Jesse continues to get occupational therapy in our home with Michelle Kaiser - usually every other week - which we really enjoy also. I think I will continue to come in to see Patricia Winders every month or two, and use the suggestions in her book. From the short session today, it looked to me like he will be learning how to get into a sitting position pretty quickly which is very exciting!

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