Wednesday, May 28, 2008

More of Him

We have been working on this little development for, oh, a year and a half.

If you squint just so, you will see Brady's little tongue sticking out. Of course we have seen his tongue before, but it has never ventured past his lips. The muscles in his mouth have been especially slow to develop and the least responsive to therapy. Slowly but surely Brady's oral defensiveness has lessened and he has allowed us to touch his cheeks and lips and brush his teeth. On Saturday morning he gave me his best Good Morning smile, stuck out his tongue and hasn't stopped since.

This may sound silly but when you see a part of your child that has never shown itself before it's a really BIG deal. I can't stop thinking about it all day long! I call up Troy from work and ask if Brady is still sticking it out. Later Troy texts me a picture of Brady licking an ice cream cone. This boy who has had feeding therapy weekly for the last 18 months finally licked one of the sugary treats his therapist has patiently put in front of his mouth all this time. I am anticipating a later post that goes something like this... "how do I get him to stop sticking his tongue out at people?" He he.

Friday, May 16, 2008

Catching Up

Certain family members have informed me it's high time for some new pics of a certain little someone. What can I say, we had a broken digital camera (AGAIN) and I have been working some serious overtime lately. Not that I'm complaining. Work has been extremely slow since Christmas (and, ahem, I work on commission!) so I am thankful for the work. What a great feeling to wrap up my last deadline today, head home early and go out to dinner with my boys. Troy is working on dropping Brady's afternoon nap so it was no surprise that Brady started to drift off to sleep mid-chew. He slept in my arms while I ate my Pei Wei spicy chicken salad with one hand. I am cherishing each and every one of these cuddly moments now that the Bubs is becoming more mobile with each passing day and far less interested in me and my brown rocking chair!

Troy has been very busy coordinating the massive paperwork and extra appointments that must take place in order to 1) get Brady's fall pre-school situation set up and 2) get us qualified for long term care. We received our long term care approval two days ago and feel EXTREMELY blessed right now. This means that Brady will be able to continue all of his therapies in addition to pre-school. We won't have to say goodbye to our wonderful therapists and bear the responsibility of habilitating him on our own. Long term care will also cover the medical expenses that our insurance company doesn't cover. We received a secondary insurance card with zeros next to "Office Co-pay", "ER Co-pay", "Prescription Co-pay", etc. It's difficult to get approved for this program, therefore we're still in a bit of shock over the whole thing. Ironically, we learned it was Brady's recent Epilepsy diagnosis that likely solidified our acceptance.

This is a program specific to the state of Arizona. Most states have similar programs, but they vary widely in funding. We have been told if we lived in New York or California we would get so much more. Unfortunately, in other states, the programs are vastly under-funded and countless deserving families receive no assistance whatsoever in raising their children with extraordinary needs. I hesitate to give the details because I just find this whole funding situation so unfair. But I truly believe that knowledge is power and I want other parents to know what is available out there. On top of the medical cost sharing, we are qualified for a certain number of hours of respite care in our home each month. Assuming we can find a respite provider we are comfortable with, the state will pick up these costs as well. Respite care is meant to allow parents time to run necessary errands, spend quality time together, or simply do household chores that so often go undone when you can't take your eyes off a high needs child. Troy and I learned the hard way how exhausted and depleted we were capable of becoming when we dealt with the escalation of Brady's Epilepsy a few months back. This program will provide us a safety net, both functionally and financially.

It feels strange, and a little humbling, to receive all of this help. Brady is doing so well right now that some days I almost feel guilty about all of this help. Yet other days I see typical three year olds and realize that the gap between Brady's development and theirs is starting to widen. I constantly hear of this window of time in which kids' minds are so capable of learning and I am so grateful we have some serious assistance in maximizing what is left of this window. The bottom line is we are lucky... in so many, many ways. I said this to an ER doctor once and he laughed at me and muttered under his breath, "yeah, reeeally lucky" as he looked down at Brady. What an A-hole. We are lucky I didn't lose Brady at 25 weeks when I started to dilate. We are lucky that our geneticist's initial hunch that the Bubs had a life-limiting metabolic disorder was wrong. We are lucky that Brady is silly and loving and stubborn. We are lucky to have supportive friends, family and countless professionals willing to help. Just plain lucky.

We are also lucky that Brady met a new friend. We affectionately refer to J. as "hair twin."

Tuesday, May 06, 2008

34 Days & Counting

It's hard to believe Brady has made it over a full month without a single seizure. If some good has to come out of this whole Epilepsy issue, it is that the world looks like a whole new place if you are lucky enough to begin living seizure-free.

Brady is sleeping through the night without the random twitching and jerking of his little body that had been waking him every few minutes. He sleeps in the guest room on a mattress on the floor. Classy, I know. It doesn't hurt if he rolls off the bed in his sleep so his little make-shift bedroom works for now. Brady loves that room for some reason and refuses to sleep anywhere else. He goes right to sleep like a perfect angel, ALL BY HIMSELF, even though his parents tried to mess with his sleeping habits by cuddling him tightly for the past nine months. He usually waddles out to find me when the sun comes up.

We are all sleeping through the night on a regular basis and thankfully have our happy boy back. Milestones are popping up all over the place and Troy and I are feeling comfortable enough to have a babysitter come over on Friday night. Now that I think about it, Brady handled these past few months so much better than we did. He prefers to sleep alone now while we still can't turn off the video monitor. We will get there. Baby steps. Thank goodness for resilient little boys!