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Wednesday, September 9, 2009

Digging

"Life's a garden...dig it." - Joe Dirt

We had a family member in town that kept saying this tag line and how can you not giggle when you think of Joe Dirt's twang as he utters this phrase?

I'm digging being at home right now. But it hasn't come without stress. When I was at Hacienda all I had to concentrate on was Christian. Being at home, the rest of your life gets in the way. Things like dishes and dinner have to get done. It's an adjustment, but I also feel like Manny and Gabe are doing much better now that I'm home. In fact, Gabe just tried to debate me on why grades shouldn't matter when playing after school sports in middle school. Ha! Silly boy.

Another stressful issue has been lining up therapy. I think I've mentioned that I love the town I live in. But what is up with not having ANY services? I seriously googled Pediatric Physical Therapy in Tucson and got crap for results. I've heard services are very scarce but I don't understand it. Are there not children in this town with special needs? Do all families just pick up and move to Phoenix for services? I don't understand the complete lack of knowledge and availability in this town for services. I know it's only been a week, but my mission was to line up therapy as soon as possible so there wasn't a lapse in progress for Christian. I did find a program that gives interim therapy while other therapy is being lined up, but I just heard back from them today. Am I just impatient? Probably. But there doesn't seem to be any sense of urgency on anyone else's part so Mama's gotta get things done. I feel ineffective when things aren't getting done.

That leads me to a high point of today...we got OT and PT appointments scheduled! Hallelujah, people are doing their jobs! Our first appointment is Friday morning and our next will by Monday. I'm so excited to get this ball rolling. What I'm not excited about is that these therapists are new to us and don't know Christian or how far he's come. I just hope we all vibe. I also found out today we finally qualified for long term care, which will be a huge financial burden off our shoulders and the insurance will correlate with the Department of Developmental Disabilities and Early Intervention for Christian to receive therapy at home. It's only been a week at home and it feels like it took forever to do this but it really didn't. It just took a lot of persistence. I'm just not one to sit around waiting for them to call me so people are going to get a little harassed now and then.

I'm also a little overwhelmed by how many "things" Christian's needs. When I registered for my baby shower with Christian, I didn't register for a lot of things I should have. Mainly because I stuck my nose up at some of the new "inventions" that were around when ten years ago I made it just fine with Gabe and about a quarter of what we have now. What was I thinking?!?!?! Some of those things really would have come in handy right now. I finally purchased a Boppy pillow (I know, a little late) but it's great for Christian's positioning when he's hanging out and it's also great for tummy time (tell you something you don't know, right?) We've put in an order for his tumble form chair, which is a special positioning chair and a special stroller that I really like because it looks like a stroller but has special functions just for Christian. Getting this items will probably take a few months so in the mean time, we're using a jogging stroller. I'm on a search for a really cool mobile to hang over his crib and really annoying sensory toys that have lights and sounds and gadgets, oh my! There's just so much baby stuff that I'm thinking would come in handy! Ah, well...it will be fun shopping and Lola will reap the benefits.

Tomorrow I'm going to pick out decorations for Christian's Superman themed party. I'm so excited to celebrate his life and the fact that he's here with all of our family and friends who supported since the beginning. We have such a great support system and we are so blessed.

As for Christian, he is Mr. Loosey Goosey. Let me explain...he has had a lot of posturing and stiffening. This is common in brain injury. We have braces for his arms and legs, which I love, and they've almost helped him to be aware that he has limbs that he can move. I've only seen progress since using them. But his arms and legs have been so stiff in the past and they were hard to bend. But now his arms bend fine, and there is little resistance. With his legs, he is still stiff but he's bending a lot easier. It's so neat to see him so limber and it's getting easier every day. And now I get whimpers everyday more consistently when he's upset, which is always music to my ears.

As soon as this place (when I say place I mean household) is up and running (when I say up and running I mean functioning at a level that won't lead to insanity) I will post pictures.

Until next time, I'll be diggin' my garden. (He, he, he :) )

4 comments:

kendra said...

So I am not sure if or what differences there are in physical therapy. . . but my step brother was injured at birth and did something like 10 years of physical therapy on his arm. And it is in TUCSON! I dont know the details but if you want you can call me and I can give you my step mom's number and I am sure she has some great recommendations.
-Kendra
520-269-5347

Brooke said...

I am so happy to hear that you were able to get the therapies scheduled!! Awesome!!! And I can totally see where you're coming from as far as everyday little things being different from things you didn't gave to worry about at Hacienda......It must get overwhelming at times but you can totally do it Shauna!! And as far as new gadgets/toys for Mr Christian......I just found his birthday card while cleaning off my husbands desk and I was absolutely horrified that it had never gotten sent!!!!! But now I'm glad it didn't because he'll just be getting a late first birthday present!! :-). Now I'll know exactly what to send!!!! I think of you guys often........I am happy to hear he is loosened up and more limber!! Thank you so much for continuing to keep this blog going! I check it faithfully for updates and get so excited when I see one! Please continue to take as good of care of yourself as you do of everyone else!!! XOXO

gavman306 said...

Great news on the therapy! He will REALLY soar now, therapy in his own house will be awesome!!!!I've said it before and I'll say it again, you are amazing! It's always hard to get in the swing of things, but you have proven to be a trooper. So good to hear about Christian's bending! I've got some cool superman stuff waiting for Christian...I'm sure his party is gonna rock!! On your FB someone mentioned a registery for stuff you could use for Christian, you should really do it! Continued prayers coming your way...what in specific do you want us to pray for??
God Bless You!!
Melissa Sinclair

Marketos Family said...

Shauna - I've been quietly following Christian's Story from the beginning. I found out about your story from Jenny, CiCi's mom.

I have two Tiny Love Symphony In Motion Mobiles that I no longer need. I would love to send them to you. One for Christian and one for Lola. I tried to copy and paste a link to Toys R Us but am unable to do it.

If you have time to take a look at Toys R Us and like what you see please email me with your address and I will get them to you.

You are an incredible mom.

With thoughts and prayers!
Beth Marketos
beth@marketos.com

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