Tuesday, February 2, 2010

Monday, February 1st, 2010

After several months of back and forth - two items finally appear to be resolved in my medical life.
Because of my Mommy's travel schedule for work, she called my jaw surgeon's office back in mid-December to reschedule my jaw surgery on 2/16 since she would be out of the town the very next week. If you are not familiar with the distraction process - it involves an initial hospital stay of several days and then several weeks of daily pin turning. This was a terrible process last time because of poor pain management and there is no way Mommy would abandon Daddy and I during this time. To her surprise when she called, though, she discovered that as of 2/1/10 Dr Schendel was no longer with the Lucille Packard plastic surgery group. Instead, he was going into private practice. Since he was still admitting to Lucille Packard that would work out okay but they were still waiting for his new OR schedule and the surgery couldn't get rescheduled until that was determined. So Mommy waited (not so patiently) until late last week when she was notified that March 16th is my new OR date. We will need to go down to Palo Alta for a preop appointment on March 11th. Mommy is concerned that I am going to be exposed again to a bunch of folks in waiting room (the preop appointment is the prime suspect in how I get sick last time when surgery had to be cancelled)
but the office folks have promised Mommy they will do their best to keep me away from all the germs.
The second outstanding item is my feeding therapy. Because of budget cuts in California, Mommy was notified last fall that if my private insurance would pay for feeding therapy I would have to start using that instead of having the State of Calfornia pay for it through the regional center. Due to my trach, there aren't a lot of options out in the community for feeding therapy. In addition, I was not the only kid to have to start looking out in the community so all the therapsits were swamped and we have been on a waiting list for many months now. Finally, I moved off the waiting list and was able to get my feeding evaluation with a qualified therapist named Linda. She has come highly recommended from many sources so Mommy was excited to start working with her. They asked Mommy to bring me hungry so they would get a good sense of my eating abilities. I got to spend several minutes playing with toys while Mommy caught Linda up to speed on my past history. Soon I made it into the high chair and showed Linda all my tricks - like dipping crackers into pudding and licking it off, sticking out my tongue and drinking from a cup. Linda was very impressed with all my eating skills and thinks Karen has been doing a great job so far with my therapy. Linda is having us come back on Thursday for my speech evaluation. Although it will be sad to transition away from therapy with Karen, Mommy knows I will be in good hands with Linda.
Peyton Nicole Smith

1 comment:

  1. Your have a beautiful daughter.My name is Deb and I have a 6 month old son that has Nager Syndrome also.I enjoy your site as it gives me alot of information and expectations(sort to speak)on what to look forward to.Brayden was born with micrognathia,low set ears,cleft palate,absent radii with absent thumbs an club feet.He has a trach and is fed by G-tube.I am leaving my e mail address if it's okay I would like to ask you some questions,it is deb_cld@yahoo.ca.Hope to hear from you soon:)