Jake Eye Update

We decided to take Jake to a local eye dr. just to make sure he was doing okay since our last meeting with the eye dr who is part of the craniofacial team. the original diagnosis was that Jake has strabismus (lazy eye) in his left eye but controls it pretty well. The Dr. felt that Jake doesn't need surgery on his eye now as they will have to move and reconstruct the orbital sockets and eyes in his midface surgery down the road. The other dr. takes on a different viewpoint and feels Jake should have surgery to fix it now. We are going to meet with the original dr. to assess which opinion is correct and best course of action for Jake.

Jake is now wearing an eyepatch over his right eye to strengthen the weaker eye and will be getting glasses as he is farsighted. Jake doesn't like the eyepatch but with each day has gotten better accepting that he has to wear it. In order to help with the process, we called on an old friend to make Jake feel good about his new situation.

Children's Hospital Annual

Well, thankfully our trip to the "unhappiest place on earth" is over. I truly believe this place is the antithesis of Disneyland. Seeing other families enduring difficult situations and very sick children can only weigh on the psyche as you sit and wait hour after hour to meet with the overworked underpaid dr.'s who have chosen to help children versus getting rich off being plastic surgeons.
Today went well. we met with an exhaustive number of specialists all part of the craniofacial team. Hearing, Speech, Dentistry, Genetics, Craniofacial, Pediatrics, and Development Psychology. Jake got really good reports and everyone seemed to be very encouraged by Jake and the progress he has made. They can make certain assessments now that he is older and 2.5. We are fortunate that it appears Jake does have a milder form of Apert and his progress is a long way off from the worst case scenario grim reports we got when he was first born.

Now decisions will have to be made if we want to switch to Children's versus Cedars and they both have pro's and cons. The 6 hours there today was draining but if we can keep these to just annual meetings its not so bad.

That's the quick update now but it looks to be a quiet year for Jake in terms of medical needs in 2010, something we welcome with open arms.

Annual Check up

Well, its been a while since the last post and for good reason. Jake is enjoying his time away from Dr.'s and hospitals and just being a little boy. Thursday brings a mininum of 5 hours of meetings with the entire Craniofacial team at Children's. We always develop a little anxiety heading into that hospital as any parent should feel but with the trips come a mixture of emotions. Always hoping there aren't any unforeseen complication or issues that need medical attention and some relief as any trip there reminds us that things could be much much worse. This is an interesting trip for us as we traditionally were seeing the team at Cedars but are starting to think we may switch to Children's. Our biggest apprehension always being the zoo that is Children's Hospital but I think the team and structure is more sound if we can get by the long waits and harder appt scheduling.
Dr. Urata is our lead Dr. and he does service both hospitals but seems to be more integrated at Children's. We'll update status after the long Thursday.

Enjoying Summer

Tubes II

Jake came through a little cranky but all for the better. Dr. Newman after performing the procedure informed us that there was a lot of fluid in his ears and that it was very good that we did this now for Jake. We are happy that this hopefully will put an end to the nonstop ear infections and constant need for antibiotics. Jake although initially upset right after waking up seemed quite pleased once we were leaving. It was as if he thought wait we don't have to stay a week like those other times, ok great! He immediately stopped crying and was happy to head home. Let's all hope this works for Jake and it looks like smooth sailing on the procedure front. Jake is doing very well and each day he picks up more and more words and gains a tooth or two.