Wednesday, November 25, 2015

Baltimore Feeding Therapy Week 2

This week Hayden has seen every therapist in the program. He has a schedule broken down by the half hour for teaching instruction, feeding instruction, physical therapy, occupational therapy and music and play. The evaluations are concluding. Program treatments have started.  He is all day in various therapies from 9am until 5:30 6 days a week.
On Tuesday, he had his first piece of toast with jelly in his OT therapy session.  On Wednesday, he succeeded in eating all of his yogurt in his feeding therapy session. He also succeeded in taking three bites of pancake with syrup again in his occupational therapy session.  None of the pieces are larger than the size of a dime. He is encouraged and proud of himself.  He is enjoying it and not fighting it so far.

We are grateful for our nanny who takes care of our children with little/no toys or resources and made art, cookies and fun for the kids.

On Wednesday we had a late afternoon break and got the opportunity for sunshine (something we don't usually see all day being inside) so we made the most of it with a family outing to the park on a gorgeous day.
His first time balancing well enough to sit in a regular swing solo.
Belgian horses Porter and Big D.

Hayden is working on his oral motor control and hand control to use a spoon and take larger bites. That means that he is learning to use his tongue around in his mouth and have food and other locations other than the front of his mouth.  We are very excited that he WANTED to take bites of pancake even though he did still gag and vomit at the end of the session.  He has to learn how to build up his muscles and to become slightly desensitized.  

He is starting with three seconds of stimulation and we're moving up to five. That is why we are doing an intensive program that requires daily treatment instead of weekly treatment. The progress is very slow when treatment is only done once a week and not consistently.  Here the variables, stimulus and other factors are tightly controlled each feeding time like a science experiment.

Hayden loves the excitement of taking the subway.  He loves the elevators when they work and thinks his Daddy is the coolest when he picks up his chair and carries him on the escalator when the elevator isn't working.

On Thanksgiving, Scott took Hayden to eat while he observed how the psychologists fed Hayden on Thanksgiving.  This was his first time in two weeks being able to participate in part of the program.  While he was there, I was able to go for a morning run and happened upon the Baltimore turkey trot.  It was a wonderful way to start the holiday.

This weekend we are taking Saturday off and going via train to spend the weekend in DC and take the kids around the museums.  While our experience of living in Baltimore and having a child in the hospital daily is very unconventional, we are extremely grateful that we get to spend the holidays together as a family.

We have an apartment that were able to rent fully furnished and have a grocery store that we can travel to on the city bus. We have a nanny that we can trust to take great care of our children and show them a good time.  While we may not have our home and our stuff for the holidays, the most important thing is that we have each other.  At the end of an exhausting day, we come home to each other.  Through our experience, we have the unique opportunity of seeing some of the best in society. We meet some of the kindest, most genuine people that want to help families and children.  Our fellow church members and followers of Jesus Christ reached out to us in loving, selfless and generous ways.  It has touched our heart to humble our gratitude.  We are doing our best to make the most of this opportunity that has been given to us thanks to answered prayers and special friends who helped us work to get here through listing our house, storing our cars, packing our house, writing medical letters,  arranging all the schooling,  help with housing and child care.   

It is an opportunity that we could have passed on because it was too hard,  too costly,  too big of a mountain to climb.  

A great quote from Booker T. Washington,
"I have learned that success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome while trying to succeed."
Living this short while in an inner city environment,  we see poverty and a diversity of economic opportunities.  Gratitude changes your perspective and outlook creating a path to happiness.  This is something I have to work at daily to cultivate.  It is easy to see some of Hayden's challenges and obstacles but I am able to see so much of his limitless potential. He works hard to stay healthy and happy and positively growing every day. I only wish that everyone could see their own potential without self pity all the while full of self determination and patient working endurance.  

Wednesday, November 18, 2015

Baltimore Feeding Therapy Week 1

The 1st week of November we learned that Hayden had been accepted into the feeding program in Baltimore and they wanted him to start the following week.  Fortunately, I have a spouse who is willing to sacrifice himself and be a great steward over our children at any cost.  We quickly did as much as we could to help get things in motion.  We also couldn't have done it without prayers and all those that helped us pack just before we flew out.

The next week came and we ended up canceling our flight due to the denial from  our insurance company. We were run down and ready to give up.  However,  with a little energy left,  I called our wonderful team of Austin doctors who quickly wrote letters of medical necessity on our behalf and we were approved Friday morning of the same week for an outpatient program instead of staying as recommended full-time in the hospital.   This means that we get to come home every evening and have Sundays together with the family. It is a tender mercy to come home every night to our family.  We will get two Saturdays off which we hope to take a train trip to DC and to celebrate Hanna's birthday.

By Saturday afternoon, we flew on separate flights to Baltimore and arrived Sunday all together at 2 AM. 

Thanks to the recommendations for accommodations, KKI and the Ronald McDonald house, they help medical tourists reserve a nice hotel as they cannot accommodate large families. We were also able to rent a large van to haul all our luggage and family.  

On Monday we checked into our short-term furnished rental apartment in the heart of downtown across from the harbor. We are on the 17th floor of a high-rise where Scott is able to walk to work and I am able to take a shuttle, bus or subway with Hayden to the clinic.
We are a family of five living in an inner-city with no vehicle. It is a fun adventure. We also were able to have a nanny (thanks to a referral from another mother in the program)
that will be with our children Monday through Friday while we are gone at clinic for eight hours Monday through Saturday.
Tuesday we got to take the day to unpack and see what kid friendly things there were to do in the city that are within walking or public transportation distance.

Wednesday was our first day at KK Institute for the feeding program. It was a whirlwind day. We are so grateful to be here together as a family to give each other support. The people working there welcomed us with open arms and jumped through hoops to get us in very quickly before the end of the year when our insurance clock would restart.

The program is intense to say the least. It felt like my first day of college of my undergraduate studies.  I was learning where to go on campus and trying to understand my schedule for classes throughout the day.  And of course no amount of planning could keep the day from starting without drama. 
On the way to catch the shuttle, our prepared liquid tube feed lunch and dinner backpack exploded in the elevator (I am not going to miss the mishaps a feeding tube adventures; that could be a whole other blog) with no time to get a new bag or to clean up before going to the program.  Fortunately, we were going to a hospital where those items could be replaced.  

The day is scheduled by the half hour. The first day was filled with observations and assessments. He will get great service and therapy while he is there.  I have no doubt in my mind that we chose to make the sacrifice to come to the best clinic for his complex set of needs.  Nearly a week later we're starting to feel our feet underneath us and we'll be settling in for the next several weeks. We are giving this experience our al.  We also want it to be great fun for the kids.  We live across the street from the aquarium. We also live by so many exciting things for the children. They are having such a great time we are wearing out.