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.  

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