Follow-Up Appointments

Well Mr. Trey and I are up in Tacoma right now. Trey has a bunch of follow up appointments this week. I thought I would update on what has happened so far....

We met with the neurosurgeon in Tacoma who agrees with the neurosurgeon at Seattle Children's that Trey doesn't need surgery at this time to fix his Chiari Malformation. We will be sticking with care at Seattle Children's to follow Trey's Chiari diagnosis. That doctor is just a better fit for our family. Trey will still have another MRI done in 6 months to check that his Chiari isn't worsening.

We also had an appointment at Seattle Children's Feeding Clinic to meet with Trey's therapist who he would be seeing Trey if we can still attend the intensive feeding program in December. We did a short therapy session where Trey was successful swallowing a few noodles. She thought Trey was appropriate to begin the program but wanted to make sure that his GI doctor and dietitian felt that he was safe weight wise to begin also.

So we saw our favorite GI doctor and dietitian at Mary Bridge yesterday. They agreed that with all the progress that Trey is making right now this would be the perfect time to try out the program in Seattle. We still need to accomplish a few things before we go. Trey has gained about 1/2 pound back since our last visit. His sickness this past October really caused a setback for him as far as weight goes. So we will be adding more hours to his night time drip to help beef him up before December. His relfux has been doing OK but Dr. Pickens wants to make sure we are at our best so we did some medication changes also.

The therapist, GI doctor and dietitian all informed me that the 2 week intensive feeding program is going to be challenging. Trey will be having his tube feeding greatly decreased as we move through the program and this can cause a lot of stress on such a little body. So we will probably experience change in mood, energy and sleep. But they will be monitoring him very closely to make sure he is not losing too much weight, etc. I also know after leaving the program Trey won't be 100% off his tube feedings but we are excited to hopefully transition to the next step.

Now we just have to get approval from insurance. So cross your fingers that this will take place. We also will anxiously awaiting if we will be able to stay at the Ronald McDonald house during our 2 week trip. They are very busy and never know their availability until the day before we are expected to arrive. Scary!!! It would be perfect if we could stay there because we have to go to and from the hospital 3-4 times a day.

We have one more appointment on Thursday with the neurologist who is monitoring Trey's seizure medication. Which I am happy to report we have had no seizures. Then we are heading back to the Palouse and excited to see Curtis.

Hope everyone is enjoying their week.