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!

New Pictures

Now that the RSV has

Monday, January 5, 2009

Happy New Year! (Cough)

If there is one thing that the holidays provide in our household, it's adventure. While Christmas itself came and went without much fanfare and excitement, the week after was pure crazytown. Jonah contracted RSV and is just now starting to get over it. He has been vomiting off an on for a week or so, with today being his first vomit-free day (although technically it's 11:30pm - there's still time)...... The coughing and sickness made its way around to everyone else eventually, including Mira, who is now battling lots of phlegm and periodic coughing fits. Needless to say, we are all pretty wiped out from all of the fevers, sneezing, coughing, gagging, breathing treatments, and of course, non-stop laundry from cleaning up puke. Delicious.

One of Mira's big gifts this Christmas was a piano/keyboard, which has light up keys. She has always been fond of her globe toy (which has seen better days) but we figured we could get her something to bang on that offers a little more visual and musical excitement. She wasn't too enthusiastic about if on Christmas Day, but we are hoping she will warm up to it.

One of the highlights of the holiday season (prior to the RSV onslaught) was getting a surprise visit from Auntie Aura, Uncle Ware, Addy and Truman! Friday evening I answered a knock at the door and to my surprise, Addy was standing on our porch yelling 'Merry Christmas'! It took a few seconds for it to register as to why and how my nephew from Illinois was standing there, but eventually it sunk in. We did get to enjoy a few days hanging out between Christmas and New Year's with the whole gang.

As far as medications go, we had Mira on an increased dosage of Lyrica for over two weeks and it did not go well. The increase really knocked her out. She started sleeping a ton - most of it during the day. When she was up, she was pretty irritable. She has been really cranky over the past few days in particular, probably from all of the congestion and phlegm. her first experience with Lyrica was pretty dramatic in halting her seizures (within a few days), but the increase this time didn't help at all. We didn't see any difference in seizure activity over the past few weeks. Lots of head drops and myoclonics throughout the day.

Sarah and I were having a conversation about Mira and seizures and I think we've come to some harsh realities in this journey with her. I think 18 months ago, I would have thought that there is a 50% chance that something would stop them. Now, I can't help but think that the likelihood of ever gaining seizure control with her is close to zero. We have exhausted all of our options with medications and are frankly just plain exhausted with it all sometimes. It's the days when she is screaming her head off and you can't figure out why or what to even do for her, that it all feels so helpless. We just continue to take it day by day. Sorry for the mildly depressing rant - it's late and I am sleep deprived. I will post new pictures soon.