Sunday, January 18, 2009
New Pictures and Updates
Now that the RSV fiasco is almost completely over, things feel as though they might actually be reaching a level of normalcy around the house. Jonah still coughs every so often (and at night wakes himself up in the process), but I think we are in the clear. We took the nebulizer back to the pediatrician's office on Friday, so the breathing treatments are officially over.
Mira is doing alright. She has had a few nights of screaming and crying, but nothing out of the ordinary. She woke up Wednesday night and had a lot of difficulty decompressing for a few hours, but eventually went back down. Sarah and I decided on nights like that, we probably need to break out the trazadone to help her calm down and get some rest. The trazadone tends to work quickly. She ends up having a rough day through therapy and eating after a patchy night of sleep.
We are talking with neurology and genetics (and have been for weeks - it's a slow process) about getting some additional Rett's testing. As it turns out, there are four different testing scenarios in regards to Rett's. Mira has had 3 of the 4. She has been tested for the MECP2 variant ('typical' Rett's - both mutations and deletions) and CDKL5 ('atypical' - early onset Rett's - but only for mutations, not deletions). Therefore, CDKL5 testing for deletions, would be the last test. Neurology and genetics need to discuss what the right testing procedure is for the right variant. It all takes time.
We are hopefully going to order Mira's bed in the next couple of weeks, which is exciting. We are working on getting the funding in place through several (generous) local organizations. The director of Mira's school has been an IMMENSE asset in this endeavor, pointing us in the right directions and being our liaison to several orgs. On the other hand, insurance has been no help in this whatsoever. The approach insurance often takes is to wear you down through paperwork and processing time so that you ultimately give up in trying to navigate the 'system' (dare I call it that). Insurance is exhausting and frustrating sometimes, but at the end of the day, I am grateful that they have paid for just about everything else.
I may or may not have mentioned it before, but Sarah and I have been planning on putting an addition on the house for quite some time. Now that we officially are out of bedrooms and tripping over our own feet in our 900 square foot mansion, it's time to move forward with it. I met with several contractors last week and we are in the process of getting bids back. The market is soft and I think most GCs are hungry, which works in our favor. The way this will probably pan out is that we will have the shell and framing put up on the house and we will take on the rest of the interior construction. I suppose it will be a good learning experience for Eli to learn how to hang drywall and pull electrical conduit. Sarah will also have to invest in a good tool belt. Anyway, it's all moving forward and we hope to have some bids back by the end of the week.
And yes, we are still having fun with the camera - we found that one of the great things is getting really close up shots of facial expressions and lately, lots of drool. Enjoy!