Feeding therapy Miracle

It has been over a year since I posted anything here. Life has been busy with both boys, Abe is 8 now and Luke is 4. In 2014 Abe had the SDR surgery and made significant progress. Then we addressed the constipation problem. We saw some improvement with eating once the chronic constipation was under control in 2015. My last post was in 2016 and it was mostly about meal time, the refusal, the throwing of food and drink and the affect on the family. It really impacted us daily even Luke is smart enough to see and hear the meal time stress. Well that all changed when a community speech therapist started feeding therapy with him in 2015. She saw very little to no progress. It was frustrating getting both boys up and ready and driving one hour for feeding therapy and he did the same behaviors he did for us. She went to college on the east coast and knows a great program, Kennedy Kreiger Institute in Baltimore, Maryland. They are world renowned for their intensive inpatient behavioral based feeding program. She recommended this summer 2016. It was very difficult to get it approved by health insurance. No local programs could provide the type of feeding therapy Abe required in our area. Even a program in California denied him access to their program indicating his needs were beyond what is required. Finally after pulling out mamma bear more than one time an evaluation authorization to KKI feeding disorders clinic was approved. Since Abe has autism, requires an adaptive potty seat, medical supplies for his daily care and a wheelchair my family made a cross county road trip from Seattle area to Baltimore, MD. We left on a Thursday around 8pm, yes 8pm because you know we had to make sure we had everything we would need for a cross county trip for 4 people and of course our battery was dead on our van.   Thankfully my husband is prepared though, he had a portable charger.  We arrived after 7pm on a Monday and returned home late Sunday night. We saw many things along the way. In Montana the speed limits are very fast limits and people can smoke right next to the doors, yuck. WY we encountered rain and wind but a whole lot of nothing. South Dakota had beautiful blue skies but lots of wind. We did most of our driving at night. I pads, DVDs and glow sticks and snacks were a life saver. In Indiana, PN and OH  I 90 required you to pay tolls but the rest stops were fancy and the Starbucks reminded me of Seattle. We finally arrive just as we hear gun shots and bam a cop car zooms by right near Ronald McDonald House. KKI shares the space with John Hopkins but it is inner city but great care. We stayed 2 nights at Ronald McDonald House for the evaluation appointment.  The appointment was exhausting, 6 or more people watching me offer Abe food. They see exactly what they needed to. He was deemed a great candidate for their inpatient 8 week program. We were supposed to go for the 8 week stay December 2016 however insurance denied the treatment. We decided to appeal it. Some of the professionals that work with Abe wrote letters supporting him to go to KKI. We had the KKI lawyer appeal the denial. It was denied again at the appeal level. My family even Luke were at their wits end over all the negative meal time behaviors. Luke often would often act up during meal times because the focus was all on Abe. Momma bear came out again in March when it denied at the appeal level. Then it was approved quickly. Yes finally my son would get the medically necessary treatment he needs. We were scheduled to go May 1 but would you believe Abe's VP shunt that was put in 2009 was blocked and he required emergency surgery on April 26, only 5 days before our flight. The Seattle doctor assured me that he would still go but the KKI doctor said no we need to wait to ensure of surgical complications. Abe recovered quickly then on May 24 we flew to the east coast till July 20. Abe did amazing things there he did fight the feeding therapists but quickly learned they won't react and they won't give up. He chose to self feed the apple sauce (is not a preferred food) to avoid finger prompting of apricot (also not a preferred food). Would you believe he fought a little but quickly gave up and the therapists won. He self fed the apple sauce. He made progress quickly, quicker than I expected but it was not an easy road. They slowly integrated parents into taking over what they were doing. We rotated who is with Luke and who is with Abe. The boys enjoyed exploding John Hopkins, beautiful campus. KKI inpatient needs to be redone to better accommodate children in wheelchairs.  Everyone was very kind, professional and he received the care he needed.He gained 7lbs, was taken off iron supplement and vitamin D due to increased nutrition. He will eat and mostly self feed fruits, veggies and other foods he would never touch or let near his mouth. They also desensitized him to an electric toothbrush. The dentist was impressed by the increased in his dental hygiene. Everyone is impressed by his total change in eating and drinking. It is not without stress, he still throws food and drink but significantly less than before and seems to be provoked when Luke is jumping around or misbehaving. Abe is in 3rd grade now and in his picture he looks so grown up and mature. Now if only we can get his sleeping better. He wakes up screaming around 2 or 3am unless he is in my room. Most of the time is because he can't find a toy or wants a drink. Sleeping issues and academics are the next goals I want to tackle. Just hope it is not as draining as getting him into the feeding program. Luke is having a hard time and will be evaluated again to rule out any sensory processing disorders or other behavioral issues. Okay this is just rambling now. Luke fell down the stairs while running at the Y today and a nurse will be calling me to check on him in a few hours so I am just staying up. He is tired but it has been a long couple of weeks. I will probably update again to give more details about just how amazing KKI was.