Wednesday, March 13, 2013

HERO is Spelled Dr. Dehne, Nurse Gina & PT Margaret

Over the years as our medical team has grown and grown, I have come to realize that there are MANY hero doctors, nurses, therapists, teachers, social workers, clergy, etc.  I rely on our team for so many things, and every member is so wonderful with our daughter.  In honor of Cerebral Palsy Awareness Month I want to share a story about our Ortho and his nurse.

My daughter, Casey, has many diagnosis including CP.  She is not mobile and can not bare weight on her legs/feet.  She will be seven next month.  Her bones have gotten more and more brittle with each X-Ray.  We are so careful with her and have been able to avoid fractures for the most part.  However, a few weeks ago while loading Casey into our car to head to the hospital for her weekly PT her foot got caught.  It was a split second and she started to yell and cry.  Luckily we were headed in the right direction.

Instead of going to the ER where I knew we would sit and wait all day for them to check her out, I decided to call her Physical Therapist, Margaret.  I explained what had happened and that Casey was very upset and we want to get it checked out.  She told me to come on up to the outpatient area and they would get her checked out.  As soon as I hung up the phone Margaret called Dr. Dehne's (Casey's Ortho) office.  Dr. Dehne was not at the hospital, but his nurse, Gina was there and took the call.  Gina took it from there.  Gina got a hold of Dr. Dehne and told him what happened.  She had him write orders to get an X-Ray and that she would call him when the image was ready.  Gina then went over to records to get Casey processed for the specialty clinic they were doing that day so that she could get more than just PT services.  When we arrived (we only live 20 minutes away) everything was ready.  Casey went with Margaret and did some stretches while I gave them updated copies of all of our insurance cards and signed my life away (as standard practice with all medical appointments).  When I finished the paper work Gina had X-Ray ready and waiting.  We got our images and went back to stretching with Margaret while we waited for the results.  The paperwork, X-Rays and walking to and from took up about 35-40 minutes of our 50 minutes PT session.  We had about 10 minutes left to stretch and as soon as we were done Gina was back to get us.  We walked over to the clinic area and she pulled up the images.  Dr. Dehne actually sat by his phone and waited for her call.  Casey had a fracture and he wrote for her to get a cast.  Gina showed us the X-Ray and his other clinic nurse joined us with the casting tech to get Casey's foot set.  We were only there maybe an extra 30 minutes after our scheduled time to be there.  If we had gone to the ER, there is no way we would have been out in less than 4 hours.

The next week when we went back for PT Margaret and I joked about Casey having a VIP pass.  She said she was even impressed with how well everything lined up.  The fact that a doctor sat and waited by the phone is unheard of - Dr. Dehne did for Casey though.  

I was worried about Casey's foot swelling in the cast.  That evening while we were sitting at home, Gina called.  She was worried about swelling as well and just wanted to make sure Casey was okay.

We see Dr. Dehne and Gina every six months for Casey's CP/ortho issues.  In between appointments if we need equipment, letters, anything at all they are so great about getting back to us often in the same day.  They go above and beyond.  Their office got us started with Margaret almost 4 years ago as well.  Margaret has been AMAZING.  She communicates with all of our DME's and doctors, and she always try to find things Casey will like to try and make PT fun, and she has become like part of the family.  We are really lucky to have such an caring medical team.  I think this story is a great example of the right way to treat patients.  

Sunday, February 3, 2013

Hero is spelled Dr. Jody!

Bobby thinks Dr. Jody ROCKS!!!

We just can't seem to find the right words to describe just how much "Dr Jody" means to our family.  She was the first one who really seemed to listen and validate the concerns I expressed about my son's development.  After talking with her about it one time, she got the referral in place to have Bobby evaluated by the Center for Disabilities and Development while others wanted to adopt the "wait and see" approach.  Thanks to her quick actions, Bobby soon received the tests he needed.  It was discovered that he has Holoprosencephaly and Cerebral Palsy.  Having these diagnoses allowed us to get the services in place to help him better progress in his development.  "Dr Jody" is always there for Bobby medically and has allowed us the privilege of being able to contact her at any time.  However, she has gone even further than that in that she is there for us emotionally as well.  There is no doubt in my mind that "Dr Jody" truly cares for Bobby and doesn't just see him as a patient.  The feeling is definitely mutual, Bobby always wants to go see her and says "I love Dr Jody."  She is an amazing person and we are wonderfully blessed to have her in our lives.

This nomination was submitted by MOM Tonya Seaberg, you can read more about
Bobby's story at:
Coles Pages - Bobby's Story

Monday, December 24, 2012

Hero is spelled Caleb Leach...

Abby, and her hero - Big Brother Caleb
I always knew that my son Caleb was a kind, tender-hearted boy, but I had no idea just how much until my daughter Abby came along.

When 3 1/2 year old Caleb met Abby for the first time in the NICU, he wasn't scared of the tubes and wires like I thought he would be.  Despite the fact that she had a tracheostomy and was 100% ventilator dependent, his first words when he saw her were, "Why, hello there, little sister!"  He loved her from the very first moment he saw her.

Abby came home to us 100% ventilator dependent.  We attempted to try out a bit of normalcy by taking our "Mega Stroller" filled with a portable ventilator, a suction machine, a pulse oximeter, an apnea monitor, an oxygen tank, a huge diaper bag filled with mostly medical equipment, oh--and a baby!  We obviously got quite a few stares from curious strangers--especially when something beeped--but there was one time when a group of middle school boys were being extremely rude and disrespectful.  I didn't have to say a word.  My sweet little boy marched right up to them, looked those big boys in the eyes, and said, "Don't you know you're looking at a miracle?"

Our Hero Caleb, kissing his sister Abby
Because of the rarity of Abby's syndrome, the doctors didn't have much hope for her.  We savored every minute and thanked God for each day we had with her.  One night before bedtime, 4 year old Caleb decided to let Abby sleep with one of his favorite stuffed toys.  I asked him how long she could have it, and his reply was, "Until she dies."  Not wanting to make a big deal out of it, I joked that it would be a pretty long time for him to be without his favorite toy!  To my dismay, Caleb burst into tears.  When I asked him what was the matter, he just wailed, "How long?  How long will we have her?"  My husband and I couldn't answer that, but we both held him and cried for a long time together.

Now that our miracle girl is trach-free and doing amazingly well, five year old Caleb has taken on the role of therapist.  He loves to do all of her speech, PT, and OT exercises with her, and I'm pretty sure he's tougher on her than even I am!  He loves teaching others sign language too.  Working with Abby has inspired him to want to be a speech-language pathologist when he grows up.  

The Leach Family
I know that God created Caleb to be the absolutely perfect big brother to Abby.  From the moment he greets her in the morning with a cheery, "Well, good morning, prettiest little girl in the world!" to when he thanks God for giving Abby to us every night before he goes to bed, he is truly a wonderful blessing in our lives.

This "How do you Spell HERO?" nomination was submitted by Caleb and Abby's mom, Julie Leach.  Julie blogs about the many adventures of a family impacted by complex medical issues at "Life as a Leach"

Monday, December 17, 2012

Hero is spelled Erin...

My oldest daughter has a rare syndrome called LEOPARD syndrome. Due to this she has Hypertrophic Cardiomyopathy and Growth Hormone Deficency. She has to take a beta blocker every night and a shot of growth hormone. My youngest daughter Erin, is the one I say is a HERO. She makes sure we never forget her sister's medications.

She also holds her oldest sister's hand each night while she has her shot. Erin tells Emma (the oldest) "hold my hand and look at me sissy I am giving you all my bravery"!

She is a little Hero.

Submitted by MOM Sherrie Grant

Monday, December 10, 2012

HERO is spelled Laurie McMillan Hammond and The Lindsay Foundation...

Many months ago we were in search of much needed help paying for Noah's alternative therapies.  Financially we struggle to provide for all of Noah's out of pocket costs that Medicaid will not cover.  Somehow I was led to find a foundation called The Linsday Foundation.  I didn't expect help would be out there, but Laurie McMillan Hammond, the founder of The Lindsay Foundation quickly responded and help was on its way.  We were able to afford Noah's Feldenkrais therapy.  A prayer had been answered.  Several months later another crisis hit our home and we were denied insurance help with a wheelchair for Noah.  I entered a contest to win him one, but in the end Noah didn't win.  The Lindsay Foundation came to our rescue and put together a special fundraiser for Noah and paid the difference to get him a Convaid Cuddlebug wheelchair and a Special Tomato Chair so that he could eat at the table with his family.

Laurie changes lives each and every day.  I don't know what we would have done without help from The Lindsay Foundation.  They lifted us up in one of the most difficult and trying times along this journey.  They were the angels that came to our rescue and allowed Noah to participate in this world and view it so much better in a wheelchair that accommodated his needs.  Through her tremendous loss of her daughter Lindsay, she has given time after time of her heart to help other special needs children.  She is the most giving and loving person.  She connects to families and becomes forever friends in your life.  She remembers each and every child she has ever helped and loves keeping in touch with their journey, progress and accomplishments. 

There will never be enough ways to tell her thank you for all she's done.  But she will forever and always be Noah's hero.

Noah's Miracle:
Pictures attached of Noah in his Lindsay Foundation shirt and Laurie with a picture of her daughter Lindsay
Laurie McMillan Hammond

This nomination was made by MOM Stacy Warden

Monday, December 3, 2012

HERO is spelled Eli...

Eli and Molly - Best Friends Forever
Eli was two years old when our daughter Molly came into this world.  From day one he has been by her side. 

At such a young age of six he is the most caring and loving person I know.  He is quick to tell me if she is upset are if she is sick he will go get a towel for her.  He loves her so much and always wants her to be apart of his life.

If she's not with us the first thing out of his mouth is where's Molly?

I am one very blessed mom to have such amazing young man.

Submitted by MOM Janie McNutt

Eli and his sister Molly

Saturday, September 1, 2012

Hero is Spelled: Cedars-Sinai Medical Center NICU Team

Our son Austin’s journey here on Earth started on April 11th, at 1:12 in the morning at Mercy Southwest Hospital in Bakersfield, CA. It had been a challenging delivery, so we were all so relieved that Austin was finally here. Our joy quickly turned to concern because Austin was not breathing and his legs were folded up by his ears from being in the breech position for so many weeks. The NICU nurses were in the room when he was born and they cleared his airway to get him to start breathing. They placed him on Momma's chest for a quick moment and then rushed him to the NICU to keep a close eye on him.

Since Austin was not getting better and he needed special care, it was decided that he should be transferred to the Cedars-Sinai NICU in Los Angeles. On April 12th, we watched our son speed off in an ambulance and we went home empty handed to get packed to go be with him. During the first weeks at Cedars, we learned so much about his symptoms and were very hopeful that Austin could get better. Austin had an odd set of symptoms that perplexed so many doctors. He was not able to suck, swallow, or gag, and lacked some of the natural reflexes he should have. He had bad reflux and slow gastric emptying. Physically, he had a recessed chin, contractures (or immobility of his joints) in his shoulders, elbows, hands, hips, and knees. He also did not move much, had low muscle tone in his core, and often had a blank stare. The doctors ran so many tests and each one came back negative.

For a while, he was making small improvements. His joints were gaining range of motion with physical therapy, some of his reflexes were starting to work, and he was swallowing with nerve stimulation from his occupational therapist. With all of the negative test results and these small improvements, the future seemed promising. Sometime around May 15th, Austin developed aspiration pneumonia because he could not protect his airway due to his low muscle tone and swallowing issues. The doctors had warned us this day would come, but Austin was never the same after that. Although he recovered from the pneumonia, he slowly started deteriorating.

We had many difficult discussions with the doctors about how to move on and we knew the outlook was not good. Even though there were no test results to prove it, they were convinced by his symptoms and lack of development that the problem was with his central nervous system in his brain. It was then that we decided to get Austin home and treasure the time we had with him instead of wasting any more time trying to figure out what was wrong. In order to get Austin in a condition to come home, he needed surgery to get a feeding tube in his belly, a nyssen to prevent reflux, and a muscle biopsy that could be tested while we were at home. Austin pulled through his surgery and came home June 20th on Hospice care after spending the first 10 weeks of his life in the hospital.

Austin was finally at home with his family where he belonged. He got to meet his sisters for the first time along with many family and friends that came to see him. Austin got to experience so many things that he never could have in the hospital. He got to go swimming, feel the warm sunlight on his face, touch the grass with his toes, watch and listen to his sisters play around him, watch fireworks on the 4th, and be at Lexi’s 2nd birthday party. He got to feel the warm loving environment of his home instead of the cold bustling hospital. While at home, Austin continued to get worse. He showed more new symptoms along the way that pointed to a negative outcome. Just after his sister’s left to go to Aunt Jenn’s, he started having trouble breathing. He was using his accessory muscles to breath and Hospice said that was not a good sign. Austin was now on constant medication to try to keep him comfortable, but there were still times that he was very restless. Austin’s journey here on Earth ended on July 18th at 6:23 pm when he took his last breath while in his Momma’s arms.

We want to thank the doctors and nurses of Cedars Sinai NICU for the love and care they not only showed our son, but us. We are forever grateful. Dr. Cahan, Dr. Brown, Dr. Le and Dr. Peyton – Thank you for your amazing care. Dr. Le – we are forever grateful for your diligence and honesty with us. If it were not for you, we may not have had the time we did with him at home. Austin's Nurses: Veronika – for being Austin’s night angel and for loving him as if he was yours. Agnus – for being the happiest, most positive person we have ever met. The joy in your heart is amazing. Lisa – for being our rock. Always on team Austin and always fighting for what we wanted for our son. Stefani – for being someone who always helped us breathe easier. For always making us feel like we were doing the right thing for our son – and for supporting us through everything. Lora – for being our angel. You not only loved Austin, but loved us. You took care of us……and did more for us than you will ever know. Your friendship is such a gift. Austin's Occupational Therapist Michele – for being honest and not sugarcoating. Your honesty and support and friendship helped us get Austin to his best and get him home. Austin's Physical Therapist's - Jean, Deb and Tracy, thank you for stretching and loving on our son like you did. To the NICU Social Workers Randi and Cindy - you are amazing and we are forever grateful for you two.

One special example of the bond that Austin had with his caretakers was given to us by his sister Avery. The time 2 of his nurses (Lora and Stefani) came to visit Austin at home, Avery went down for a nap in the middle of the visit. When Avery woke up, the nurses had already left. Avery went to her Momma with her tiny little voice and asked, “Momma where did Austin’s angels go.” This story restores our faith that Austin’s life and passing is truly God at work because no one ever spoke about his nurses in that way in front of Avery.

Austin was never able to speak, but we imagine that if he could, he would have had words of encouragement about his situation and never would have complained about his struggles. He loved his nurses, doctors and the staff at the Cedars-Sinai NICU. And so do we.
Nurses Lora & Stefani with Austin in our home (after we left on hospice care)

OT Michele with Austin
Austin with his 3 sisters
Daddy, Momma & Austin during EEG
Austin after his surgery
Austin when he was born

Geoff & Stephanie Kallenberger - to read more, check out Austin's page.