Posts Tagged ‘parenting special needs children’

PHS Medical Director Joins Spare Key Board of Directors

Monday, January 7th, 2013

PHS is excited to announce that our Medical Director Roy Maynard, M.D., has joined the Spare Key Board of Directors.  Dr. Maynard will provide insight and guidance to the nonprofit organization as it continues to assist families and expand its network.

Spare Key has been helping the community for the past 16 years by providing mortgage payments for families who have seriously ill or critically injured children in the hospital, to better ensure parents will be able to remain present and active in their children’s care.

With the parallels in mission, the partnership between Pediatric Home Service and Spare Key that has existed for 3 years will be made stronger with Dr. Maynard joining the board. PHS’s Sharing Care community outreach program has partnered with Spare Key through monetary donations, participation in their annual fundraiser, The Groove, and earlier this year with the fun and unique experience to ‘Pedal to the Max‘, pedaling a 10 man bike for 24 hours straight.

“PHS and Spare Key have always had a natural connection through their common goal – keeping families together,” said Dr. Maynard. “As more patients are receiving their medical care at home, I look forward to collaborating with other members of the board to expand the opportunities Spare Key has to serve families in the area.”

As the organization moves forward, and with the input of Dr. Maynard, it plans to adjust the eligibility guidelines to include patients who are being treated through homecare as well as those who are in the hospital.

Our hats off to Mom’s and Dad’s

Friday, July 20th, 2012

Did you know that this Sunday, July 22nd is National Parents’ Day? If  you were looking for something to celebrate this weekend, I think you’ve found just the occasion.

Just a few of our amazing PHS parents.

According to the National Parents’ Day Council website, although similar to Mother’s and Father’s day, Parents’ Day focuses on “recognizing, uplifting and supporting the role of parents in the rearing of children.”  In 1994 President Bill Clinton signed into law a resolution adopted by the US Congress to establish the fourth Sunday of every July as Parents’ Day.

PHS would like to take a moment to recognize all of the parents who care for our amazing patients. You deserve many accolades, likely far more than are typically given to you. You devote yourself to the well being of your child and for that we thank you.  I myself, am not a parent to a medically-fragile child, but you better believe that myself, along with everyone here at PHS, are your greatest cheerleaders. You all provide me with inspiration on a daily basis with your courage, determination, intelligence and most of all the love you show your children. I am going to pull a quote from one of my all-time favorite blog posts recognizing parents of special needs children.

“You rock because you involuntarily calculate the thousand different variables in every situation and adjust for them on the fly. Because you are alert for the danger, the triggers, the anything, the everything that might turn everything on a dime. Twenty, thirty, hundreds of times a day. Navy Seals have nothing on you, kid.” ~Jess

You can ready the full post on her blog here: a diary of a mom.

Everyone have a fantastic weekend and be sure to thank your parents or any parents for that matter for all they have done to raise amazing children.

PHS is Thankful for the family caregivers

Wednesday, November 23rd, 2011

Celebrating National Family Caregiver Month

Although PHS provides the respiratory therapists, infusion nurses, private duty nurses, dietitians, medical social worker, on-site pharmacy, equipment, supplies, and education; not a single one of our services would be made possible if it weren’t for the family caregivers in the home caring for these precious kids day in and day out.

In the month of November we celebrate National Family Caregiver Month, (did you know you had a month dedicated to celebrating you?!) Well, we at PHS want to thank you for all you do and we think you deserve more fanfare than just a celebratory facebook post. So we went out to a couple PHS family homes, sat down with two moms and asked questions like “how are you doing?”, “what’s your story?”, and “what does it mean to you to be a family caregiver?” What we ended up with was some fantastic insight into the joy, the stress, and the fear that comes along with being a family caregiver for a medically-fragile child. Watch the videos below and join in on the conversation on our facebook page here.

Special thanks to Deb and Robin for letting us in your home and for sharing your child’s story as well as how their medical needs have changed your role from just parent, to also caregiver.
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Resources

In our interviews with Deb and Robin we asked about resources. “What resources have you come across that you wish you’d known about sooner, what resources haven’t you been able to find, is there something that organizations can do to make y our role as a family caregiver easier?”
Many of the resources available for caregivers are geared towards caring for aging parents, but few are focused on the care of a medically-fragile child. We’d love to hear from all you parents out there on any resources you’d like to share, or resources you’d love to come across. Maybe we can all help each other out a little more this holiday season.
Deb and Robin touched on ideas such as:

  • A message board for parents of medically-fragile children, where you could connect with other families in similar situations
  • The lack of financial resources for parents who need help with non-covered supply items

Do you have any others we can add to the list?

PHS is Thankful

I want to close today by once again just saying a simple ‘thank you’. Thank you for caring for your children, and thank you for letting all of us here help you do that. You are each truly amazing people. Wishing you all a very blessed and Happy Thanksgiving.

Hope is a powerful medicine

Friday, September 17th, 2010

Philanthropy has been part of the PHS culture since we opened our doors for business in 1990. Since formalizing our giving and volunteering by introducing the Sharing Care program, PHS has formed several valuable partnerships that serve as fantastic resources to our patients and their families.

PHS staff participating and volunteering at HopeKids Annual Suburban Adventure Fundraiser Walk/Run. For more information on the fundraiser and how you can help out visit their website @ www.hopekids.org

Having a chronic illness not only impacts the child with the condition but also the entire family. HopeKids understands this challenge and strives to support these families with the message that hope can be the most powerful medicine of all. HopeKids events provides kids and parents with the opportunity to connect with others in similar situations. That invaluable connection helps families feel as though they’re not alone.

HopeKids provides ongoing events & activities and a powerful, unique support community for children with cancer and other life-threatening medical conditions free of charge for the whole family. With events such as go-cart racing, football clinics with the University of Minnesota Gopher football team, private movie screenings, twins games and not to mention their annual HopeDay festival that, this year, included a petting zoo, BMX biker shows, super heroes, basketball and kickball games, a dunk-tank and inflatable bouncers, there is no shortage of fun or hope for these children, their siblings and parents.

To learn more about the amazing mission of HopeKids watch this video: HopeKids. Restoring Hope. Transforming Lives.

Each spring PHS employees visit Faith’s Lodge to help clean up the grounds around the lodge and spring clean to prepare for new guests

Living with and caring for a medically-fragile child can be exhausting and dealing with the loss of a child is a heartbreaking experience that takes time, strength, support and hope to continue moving forward; for those times when you’re feeling your weakest, there is Faith’s Lodge. Faith’s Lodge provides a retreat where parents and families facing the serious illness or death of a child can retreat to reflect on the past, renew strength for the present, and build hope for the future.

Faith’s Lodge offers families a place to reflect and regroup and hopefully leave with more hope and energy than when they arrived.  While at Faith’s Lodge families have the opportunity to spend time and connect with other parents who are in a similar situation, giving you a feeling of support and understanding.

Visit their website to learn more about the amenities and the process for applying to stay at Faith’s Lodge. With a suggested donation of only $25.00 per night, Faith’s Lodge is truly a resource to families when they are in need of a break, a getaway, support from someone who understands their situation or just some time to renew their spirit.

Coming up on September 25th is Hope Rocks, an annual event benefiting Faith’s Lodge. PHS is proud to support Faith’s Lodge as a sponsor for the second year. If you are interested in sponsoring or purchasing tickets to the event please visit the Hope Rocks website.

To learn more about how Faith’s Lodge impacts the lives of those who stay watch this video: Faith’s Lodge. A place where hope grows (warning, it’s a tear-jerker)

Have either of these organizations touched your lives? We’d love to hear your story or see photos from events you’ve attended.

Special needs children and summer fun

Wednesday, July 28th, 2010

Who doesn’t love summer – especially if you’re a kid?

Meet some Pediatric Home Service children who don’t let complex medical conditions get in the way of safely enjoying all kinds of outdoor activities.

Pediatric Home Service patient Lucas playing summer league baseball

Lucas loves baseball and sees plenty of action on his Miracle League, team the Rays. Born with Down Syndrome, Hirschprung’s Disease and short bowel syndrome, Lucas is safe at home plate and safe at home with his family. PHS provides TPN, enteral feedings and other care, and he has been in the hospital for two brief stays in the last three years.

Pediatric Home Service patient Tana riding horseback on the beach with mom Jill

Although she is wheelchair-bound, Tana rides horseback, swims, tubes, and goes four-wheeling. Born with spina bifida, she was also diagnosed with a brain malformation, breathing disorder and MRSA. Expected to live to age five, Tana is almost 13 and enjoys a remarkable quality of life. She has even taken trips to Mexico and Disney World.

Pediatric Home Service patient Emily romping on playground equipment.

Emily can do almost everything other kids do, which is remarkable considering what she’s been though. Born with multiple congenital problems, including omphalocele and restrictive lung disease, she spent her first six months in a hospital and required 24-hour nursing care when she first came home from the hospital. Today, Emily uses some oxygen at night and will have surgeries on her back until she reaches skeletal maturity, but as you can see, that doesn’t slow her down one bit.

Here are a few more PHS “kids being kids.”

Kali slides down to mom

Emerson enjoys swinging outside

Mary Kate plays kitchen with mom

In these “mom and me” photos: Kali comes down the slide, Emerson enjoys swinging, and Mary Kate plays kitchen.

Do you have stories or photos to share?

Got any photos or stories you’d like to share about special needs kids having fun? Or any tips to share on what you and your family do to help your child with special needs venture out into the world and enjoy all it has to offer?

We’d love to hear from you.

Living in harmony with your kids’ special needs helpers at home

Wednesday, July 21st, 2010

When children with special medical needs come home from the hospital, they don’t come alone.

In addition to equipment and supplies, your kid’s special needs typically require the services of a variety of medical staff, including nurses who may be coming and going, or even in the home 24 hours a day, seven days a week.

That may take some getting used to.

Here are some tips from PHS staff and parents on how to live in harmony.

Communicate expectations
Make sure nurses understand what you expect of them. Decide on boundaries early on and keep communicating (things like where nurses should park their vehicles, can they use the refrigerator or should they bring lunch in a cooler, can they use kitchen appliances, or a separate bathroom). If something isn’t working, make changes so the family can maintain some level of privacy.

Take notes on kids special needs
Try using a “Communications Book.” You and the nurses write comments in the notebook throughout the day and are able to communicate through notes left in the book. As nurses change shifts, they read through the book to see how the child is doing that day or if anything has changed since they were last in the home. This keeps everybody on the same page.

Parents can also use the book to communicate an otherwise uncomfortable situation (for example, if one nurse is bad at cleaning up, the parent can write a note asking all nurses to please be better about cleaning up after themselves. That way, the parent doesn’t have to call out a specific person, but rather lets all nurses know they need to be careful and conscientious when they are in someone else’s home).

Make a list
Give the nurses a list of “need to know” situations, such if you wished to be awakened for fever or other signs or symptoms of an impending illness during the night or when to be called during the day.

Don’t let things fester
Address any concerns before they jeopardize your relationship. This is where a communications book comes in very handy, but if you are uncomfortable directly or indirectly confronting a nurse over a certain issue, talk to her/his supervisor.

Understand that personalities may clash. You may be able to overlook that, but if there is a nurse in your home you know will not work with your family, ask the nursing agency for a replacement.

Help the nurses help you
Don’t expect the nurses to know everything about your child. You are the expert; orient them as much as you can and let them be helpful to you.

How do you cope?
How does your family deal with having extra people in your home? Can you share any tips on how to maintain privacy and normalcy?

We’d love to hear from you.

Join the community

Thursday, July 8th, 2010

Welcome to PHS Thrive, Pediatric Home Service’s blog on all things related to pediatric home health care for medically-fragile children.

Do you have a child with a complex medical condition? Are you and your family facing the challenges of caring for a technology-dependent child at home? Would you like to share a success story about the rewards of caring for your medically-fragile child? Are you a health care professional providing services for technology-dependent infants, children and adolescents?

This is a forum for you.

Learn and contribute

We encourage you to visit often to:

  • Hear advice and insight from pediatric home health care experts,
  • Get news ranging from the latest research to equipment updates to health care legislation,
  • Connect with other families facing similar challenges by sharing information and providing support, and
  • Share the joy you experience caring for your child with special medical needs.

In addition to sharing advice, solutions and news, this is a place to celebrate the achievements of children who overcome enormous medical obstacles to live full and happy lives at home, with their families. Children like Tana.

Meet one of our patients

Born with spina bifida and other illnesses, Tana has fought for life, but loved every minute of it, says mom, Jill.

Her advice: “Don’t be afraid to bring your child home. Don’t be afraid to encourage your child to live a normal life with whatever medical condition they have.”

Read more about Tana.

Share your stories

Do you have a child like Tana? Or a story to share, a question to ask, or a comment to make?

Are there particular topics or issues you suggest we address in the PHS Thrive blog?

We’d love to hear from you. What’s on your mind?