Thursday, October 8, 2015

Feeding/Eating disorder Baltimore Kennedy Krieger Clinic

How did we get here?
A special thanks goes out to having a wonderful companion husband in Scott to raise our children. He quickly rearranged his schedule to be able to work from home and take care of the kids. 

Wednesday morning at eight 8 AM we got a call that there was availability for Thursday afternoon if we could make it across the country.  With God's timing, when he wants something done, he'll make it happen. Within a few hours we had a reasonably priced same day flight with a fast connecting layover, a discounted hotel (complements of the local Ronald McDonald House as they were all booked) and the social worker all scrambling to help us make these accommodations. Hayden got off the bus and we whisked him away to the airport.  He thought it was a great adventure! Hanna was also happy that her sometimes annoying little brother, gets to come learn how to eat properly😉.

I quickly in haste packed a list of priority medical items in an entire suitcase (refrigerated prescriptions and liquid feeding supplies are fun through TSA)  and a small overnight suitcase for us.   With all of the haste I left my cell phone at home.  This could have been a large stumbling block but fortunately I lived and managed before the time of cell phones. When we got to the airport, just an hour before our flight, the parking lot was full and all of the handicap parking spots were taken. I drove around the barricade cones to get into the closest parking and found a spot right in the front. What a coincidence.

Spontaneity is not my style. Apparently dramatic frantic chaos is. While I didn't get much time to plan or be somewhat organized, God is always in control.

Pushing a wheelchair and pulling two suitcases is somewhat of a circus act in itself. We couldn't check luggage due to the short connecting layover we had.  We also can't risk misplacing the medical supply luggage.  So you'll have to picture me pushing all of this through TSA because my selfie on my phone wasn't available. TSA, the stewardesses, pilots and people on the plane could not have been genuinely nicer. I had to humbly ask people around me to assist in wheeling off our luggage while I carried Hayden off the plane. People were going out of their way to help us be kind to us.  We finally arrived at 1 AM to the hotel. Our consultation is at 2.  We will try to find something fun to do in the city and then head back tomorrow. 

If you want to continue on reading, I am going to write this post as a Q& A while my little guy is still resting from our long trip.

Why we are going to a feeding clinic?
For nearly 3 years we had Hayden seeing a feeding therapist weekly before he got very ill throwing up daily for months and had his g-tube placed.  We have known for some time that Hayden's weight had improved and his aversions to food had shown signs of improving since he had his g-tube. He had been willing to try new textures and new foods.  We have had him on a high calorie blended diet full of wonderful things you could only dream of most kids eating (wheat germ, kale, fish oil, quinoa, turmeric, coconut milk, pumpkin, flax seed ect.). I believe that it is thanks to his tube and his body accepting the nutrients that he has developed new tastes and appetites from eating every 3 hours of the day.  Because of so many years of developing bad habits and trying to overcome physical small motor challenges and neurological challenges, his nutritionist and therapist thought that now might be a good time to work intensely on feeding in stead of just something once a week more in his already packed daily schedule of therapies.

Choosing a clinic:
Months of research led us here.  There are a handful of intensive clinics throughout the country for high needs eating issues.  Several factors had to be considered to make the selection.  All require time away for several weeks.  I had to try to analyze what clinical approach is best for Hayden.  It was something I had to ask other parents and therapists about the good and bad and what they had been through with these programs. And the last big factor was cost.  How are we going to get there? How do we pay for childcare when I have to leave 2 other children behind?  What is the emotional cost of leaving my young children behind?  What is the educational cost for pulling Hayden out of school?  Where will we stay? How much will our insurance cover out of sate?  What are my goals and will it be worth it?  Is it the right time?

Time was ticking for getting in by the end of the year with our insurance. 
I had to start with just making the call and applying.  The process takes a lot of time going over medical histories.  As I came to find out many of the decisions are made for us when we simply started learning what was available to us.  By this time of year we had met our huge private insurance out of pocket insurance cost for in network and out of network.  We no longer had co-insurance of 20% of the bill.  Texas Medicaid isn't taken out of the state of Texas by most providers.  Even most of the docs in Texas don't want to take it.  What I learned is that every program needs to do an evaluation before they decide on the course of action.  This means a trip before they even schedule you into their program.  We need this desperately by the end of the year or we are subject to our huge out of pocket co-pay and 20% of the bill.

Why Baltimore?
We had been scheduled to do an intake in Dallas but have heard less than favorable comments from several people which detourred us from investing in this most convenient clinic. We have a personal friend that had a huge success at the Children's Hospital of Philadelphia. Unfortunately their program is not inpatient and you go home to a hotel every day for 4-6 weeks.  Lastly, we were considering a multidisciplinary program in orange county as well. Kennedy Krieger and Johns Hopkins together offered so many specialists that seem to be exactly tailored to eating disorders as well as to Spina Bifida.  We actually had one parent say they had left the Texas program and had success completing this program.  It seems like a very good fit that works out at an individual pace. 

The most exciting news was that we would be covered by insurance at 100% if we could get in by the end of the year. Unfortunately, their next appointment wasn't until March 2016. We were put on a waiting list and now we do our evaluation and learn what God has in store for us next. This is not a dull journey.  

Carpe Diem and Yolo Baltimore crab cakes on order for feeding clinic?