Avery Grace

Avery Grace

Wednesday, March 2, 2011

Update



I just ate a banana because I read somewhere that it may help my eye to stop twitching. It's been twitching for over a week now, and this morning I finally googled the "cause" and "cure" and the suggestions were to get at least 8 hours of sleep a night (ya right) and ease the stress in your life... however the hell you do that! Between Autism (which in our house = nocturnal, flappy, happy child), and my teething baby, I MIGHT get 1 hour of sleep at a time, never more than 2, and only in my dreams will I ever again see 8. But whatever....I can power through, and am certainly grateful my kids are here in this house and not in a hospital or locked away in some institution. I'll get up for the rest of my life if that's what it takes. Though these eyes are tired and twitching, I can still see what's really important.

It's been a trying few weeks to say the least, and thankfully we have had some exciting distractions to pull our heads out of our asses and give us a break from the worry and anxiety. Avery did GREAT at her 24 hour EEG, and they ruled out landau-kleffner syndrome. The Rett Syndrome test won't be back for a couple of weeks, and though she didn't seize during the testing, the results were still "inconclusive" as to whether she has or will seize. Everybody, including the baby and my mom who was visiting) had and overcame strep throat, and the baby has also had a lung infection and is still on breathing treatments. We are hoping that when that is cleared up she will start sleeping again... fingers crossed!

At her 4 month check up the pediatrician noticed that her red eye reflex was asymmetrical, so she referred us to a pediatric eye doctor who scared the shit out of me at the start of the appointment by suggesting that baby P could have a retinoblastoma. She doesn't, but why she scared the hell out of me for 45 minutes I'll never know. There are some issues with her eyes and her vision, and that coupled with her hypermobility (freakish double jointedness) made her suggest that we get a genetic workup done to check for Marfan Syndrome and or Ehlers-Danlos Syndrome. Both have some scary components, but frankly, neither are intellectual disabilities so I am more okay with these possibilities than I would be if we were talking Autism again....or even Mastocytosis which increases cancer risks significantly. Neither of which does the baby have any sign of so far. That sounds bad...and I know I shouldn't compare, but when thinking about quality of life, fundamental abilities to relate and communicate to others, and overall daily functioning, a few physical abnormalities seem like a cake walk. As long as it's not life threatening... we are good.

So, sweet baby Presley has an appointment with a pediatric geneticist on St. Patricks Day. So again, we wait and see. And in the meantime, we enjoy her precious giggles, big gummy smiles, and adoring babble. She is such a pleasure to parent. We love having a baby around!

We also just had Avery's annual ARD meeting with the school district to determine goals for the upcoming year, decide placement, and review progress. Avery has made some good progress in her classroom in the past year, especially with her motor and cognitive skills! She is being moved, however, out of her Total Language Classroom (for kids with moderate to severe Autism) and in to a Life Skills Classroom (to learn more fundamental self-help and daily functioning skills). Her class will have kids with various disabilities and we are nervous and excited for her to start elementary in the fall. Scary how time flies. Makes my heart a little heavy.

Kaylin, who I don't mention nearly enough on this blog, is super independent, fiesty, and into everything! She is starting to read a little bit, talks like a teenager, and is very into Justin Bieber. Did I mention that she is not even 3? She MUST do everything herself, from dressing to food preparation, and loves to be loud and hyper! She is a blast, and brings quite a bit of drama, trouble, laughter, and joy to the mix. Love that little red head.

The other big, albeit not nearly as important news, is that we will soon be moving to a new house here in Frisco! It has more space, and a pool which we are both excited and terrified to have! Before we move in a safety fence and several door locks will be in place... so I can get my one to two hours of sleep at night. We decided to get a house with a pool as Avery LOVES the water (and has no fear) and can do some therapy in the water, as well as hopefully improve her body awareness and sensory needs. I think it will be great to have here in the hot summers... though I'm sure one very expensive hole in the ground to maintain. But it's worth it not to have to haul my three kids out in the heat with all of our stuff to go somewhere else to swim.

So we are busy with kids, doctors visits, schools, 22 hours of therapy a week for Avery, work, and house stuff, but we are somehow keeping our sanity in tact and enjoying our precious little ones. Hope you and yours are finding peaceful moments, and time to be grateful.

1 comment:

Dr. Jaime said...

You amaze me every time that I see you! Dr. Jaime