We're going to Baylor!

Eli started working with several therapists with ECI in late 2010. He had an occupational therapist, speech therapist/feeding therapist and service coordinator. He also had a nutritionist for a very short time. In late 2011, his speech/feeding therapist told me about another family she was working with. The mother had told her about a feeding therapy program at Baylor. Since ECI had been working with Eli for almost a year and a half with very little progress (despite their very hard work), I began looking into this program at Baylor.

I started with a short phone call to ask about the program. The details they gave me: Come for an evaluation, then be scheduled to begin treatment. Eli would be in-patient due to his feeding tube. The program is 6-8 weeks and, without insurance, runs $45-65,000 dollars. Because of all of Eli's health problems, traditional insurance is out of the questions, so he is currently on CHIP. At the time I made this phone call, Baylor did not accept CHIP. So, the phone call ended and I was, obviously, very disappointed. I basically gave up hope of ever getting Eli into the program at Baylor.

Then, about a month ago, I received a phone call from Jackie, Eli's new case manager for CHIP. She introduced herself and talked about her role of making sure Eli was receiving the appropriate health care. She then asked if there was anything she could do for me. This was the perfect opportunity! So I told her about the program at Baylor, and Jackie went to work! It was a few days later that Jackie called me back and said that she had spoken with Baylor and they would take Eli's insurance! We were so excited, but this didn't last long. A few days later, I received an email from Jackie saying that now Baylor was saying they were no longer accepting managed care Medicaid or CHIP. Jackie reassured me though that they were working on a compromise.

At this point, we began asking everyone we knew to start praying. Something just had to work out! On March 23, the one year anniversary of Eli receiving his feeding tube, I was driving out to Adam's job-site to pick up his paycheck. On my drive, I received another phone call from Jackie. As I answered, Jackie told me that she had some very good news for me.... They had finally made a deal with Baylor and they were signing a contract with CHIP..... ELI WAS IN!!!!! I was so excited and shocked that I missed my turn by about 3 miles!! Jackie told me to be expecting a phone call from someone at Baylor to set up an appointment for Eli's evaluation.

Once I finally had my bearings, I turned around and found my way to where Adam was working. I still had tears streaming down my face when Adam walked up to the car and I was finally able to tell him the amazing news. I don't think it took long for everyone we knew to know! We were almost immediately on the phone calling family and friends.

Then, the following Tuesday, I received a phone call from Baylor telling us that our appointment for Eli's evaluation is May 18. It will take 4-5 hours. We will stay in one room and everyone will come to us. There will be an occupational therapist, speech language pathologist, behavioral psychologist and dietitian/nutritionist who will all come to observe Eli and ask questions. From there, we will find out when we return to Baylor for treatment. I've had people tell me that they went for the evaluation and were told to go home and pack their bags then come back in two days. I've also been told by others that they went for the evaluation, then had 2 months before they had to return for treatment.

So, there is still a lot of unknown and a lot of planning. What we do know: Adam, Eli and I will all go to Baylor for the evaluation on May 18. Once we find out when Eli will be admitted for treatment, I will quit my job. (Thankfully, this is all after graduation, so I won't have that to worry about!) Adam will stay in Lubbock to work and Eli and I will pack our bags and move to Baylor for 6-8 weeks. Adam will come to see us on the weekends as much as possible. My mom has also said she will be coming to visit and help when she can.

We have been truly blessed. This news of Eli being accepted to Baylor has given us so much hope! We've been dreaming of how amazing it will be to come home after those 2 months and Eli say, "I want chicken nuggets" and he actually eats them! I can already tell you, I'm going to be bawling like a baby the first time Eli eats real food! So, we want to say thank you to all our family and friends, and the friends of friends and people we don't even know, who have been praying for this! God is good and he does answer prayers! I will definitely be keeping up with this blog while we are at Baylor so I can keep everyone updated with Eli's progress. I know it is going to be tough, but it will definitely be worth it!!!

http://www.baylorhealth.com/PhysiciansLocations/OCH/Pages/Default.aspx
This is the website for Our Children's House at Baylor. I invite all of you to check it out and read about the amazing work they are doing with children!