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."




9 comments:

onceapickle said...

What a great update! I love hearing what you guys are up to and the latest and greatest with Brady. He is too cute (I LOVE the hair twin, that is seriously so awesome!). I'm so happy for you guys that you live in a place where you have so many wonderful programs and assistance available to you. You deserve it. Hope you have a great weekend!

bella said...

What a great update!

Its really wonderful that you were able to find, and then qualify for!, all of that great care. When EK started school, we had to move all of her therapies into the school system. She loves her classes, and we are finding out that she is good friends with a couple of the girls in her class. Unfortunately, I'm not overly impressed with the therapies she is getting there. I may have to just suck it up this summer and get her back into private programs in addition to her school.

but (you had asked on my blog) I see a lot of really great improvements in her being in the class. She doesn't demonstrate much to the teachers, but she knows and signs and (mostly) says her entire alphabet now, which I have to attribute to preschool. And her attention span has greatly improved (she used to hop from activitiy to activity, and now she will stay with things for up to 10 minutes if its interesting to her).

Anyhow... Glad to hear that things are working out well for you and Brady, and good luck starting preschool! Its such an exciting new phase!

Lindsay said...

You know how much I LOVE your pictures. I am so happy that things are working out for you guys and you are lucky becuase you have the most adorable little guy ever! Have a happy day today! :)

Alice said...

What a cute picture of Brady and his "hair friend". It makes me smile to see the two golden-haired buddies together.
Your little family has been richly blessed. It is so wonderful to have some good news about the long-term care insurance. Give Brady a big hug for me.
Love, Grandma Farnsworth

Sara said...

I didn't think anyone had hair as cute and curly as Brady's! :)

And what a blessing to be approved into that wonderful program! Ahhh! What a relief! :)

Good luck, T, with the preschool/HHC paperwork... I am sure it is overwhelming. Blech~

Rebecca Storms said...

It can be amazing and humbling where we can find blessings in our lives! I am so glad that you are feeling and recognizing those blessings. Hold on to that - it helps get through those hard trials. I know you know all of this way too well. Anyway, I LOVE Brady's new friend - hasn't friendship always revolved around hair? True friends are there for us on good hair day's and bad hair days. They are too dang cute!!!

Rebecca Storms said...

It can be amazing and humbling where we can find blessings in our lives! I am so glad that you are feeling and recognizing those blessings. Hold on to that - it helps get through those hard trials. I know you know all of this way too well. Anyway, I LOVE Brady's new friend - hasn't friendship always revolved around hair? True friends are there for us on good hair day's and bad hair days. They are too dang cute!!!

Jane said...

I want you to know, that on a regular basis I miss all of you. And, we've never even had the opportunity to really EVER hang out!

How adorable is hair twin! l-o-v-e it!

Luck is a blessing, isn't it? Dusty & I always talk about so much in life just being luck. I just watched a special on TV the other day about a program similiar to one you mentioned that brings a care provider to your home so the parents can have a break. I think it's so great you will have this, so mandatory! I think it is wonederful that you have qualified for all the funding, programs, care, etc. and I hope Brady continues to do so well!

Erin said...

Oh, what a sad day when they are starting to not need that nap, but at the same time - still need it!!! Isaac has hit that time as well! It's always so fun to read about Brady (and you guys of course). Wow - totally his hair twin!!!