Thursday, September 27, 2007

Evaluation Results

Cara had her PT/OT (physical therapy/occupational therapy) open evaluation yesterday at Children's Hospital and, overall, things went better than I expected. On average, Cara is at the 10-14 month range, which is right on considering she just turned 14th months on the 17th. The one area that she is lagging behind is in her gross motor skills. She is not really mobile yet and because of that, she's at/around the 6-9 month category for those skills. We also need to work on getting her pincher grasp developed. Her therapy plan is going to be mostly focused on strengthening her torso and leg muscles so that she has the strength where she needs it to begin to crawl, support her weight and eventually cruise furniture and walk. They are also going to "push her out of he comfort zone" when it comes to maneuvering from a sitting position to the pre-crawl position and forcing her to get used to supporting herself and using muscles that she previously hasn't used. She does have low muscle tone in her lower abdomen and legs. I have been given a list of things to work on with her here at home to try to encourage her development in these areas. Basically, we are doing play therapy--such things as coloring with markers, stacking blocks, turning pages of a book to develop the pincher grasp, reaching and playing with toys on her Boppy pillow to get her accustomed to being "on all fours" and other fun activities. Somehow, I don't think Cara is going to mind having me spending more time with her. She thinks it's all great fun.

She will be going to PT once a week for awhile until we start to see some progress and then will possibly scale it back to once or twice a month. At this point, she will be seeing OT once a month. Reason being is that they want to make use of our limited insurance coverage to get her mobile, which both therapist deem more important than anything else.

Cara had the most fun yesterday and soaked up all of the attention. She enjoyed playing with all of the "new" toys in the PT gym and showing off for the therapists. She was able to do some things that I didn't know she could do, with a little bit of coaching. Now that I know the potential is there, she's not going to be getting off as easy anymore!

Her therapists also want her to see a speech and language pathologist to work on language development and acquisition. At this point, Cara has still not spoken her first word though she does babble almost constantly and says "Mmmmommmm" a lot. She also needs to learn to respond to simple commands and phrases. We are wanting her to talk right now, but I imagine, once she does, we'll be wishing for peace!

We have been very fortunate to have great friends who have helped point us in the right direction for finding sources of free or reduced cost services for Cara. We have discovered Developmental Pathways and are busy getting started on the qualification process for receiving services from them through the Child Find program that is offered in conjunction with their program and the local school district. They provide developmental screenings, personalized home visits to see, hands on, what services Cara might benefit from and then, if we qualify, all of the intervention services we might need. This includes PT and OT as well as, hopefully, a speech and language pathologist. The best part is that the therapists from the hospital will work with Child Find to coordinate services. In other words, they will fill in the gaps if Child Find isn't able to provide everything that Cara needs. I'm so excited to get the ball rolling and start to see Cara catching up developmentally.

All the therapists seem to agree that if we follow the therapy plan, Cara should be on track developmentally by the time she's 2 years old. This is such wonderful and encouraging news for us! We have our work cut out for us over then next year or so, but it's going to pay off big time for Cara.

Oh...in other news. We have qualified BARELY for the Colorado Indigent Care program which will help pay for any medical expenses that we incur. I found out too, that we can back-bill up to 90 days which means, this may help cover the cost of Cara's shunt surgery--the portion that our primary insurance won't cover (about $1300 to date and rising). I just about cried when the financial counselor told me this yesterday. A huge weight has been lifted off of my shoulders! Finally, we may be able to catch up financially.

So, yes, yesterday was a great day!

Wednesday, September 19, 2007

A Glance @ my Palm

(I'm so glad that I found this--it got lost in the moving shuffle--and brought a cable so that we could sync it up again. It's old, but gets the job done)


September 24th
--2pm--Hearing Aid Appointment (Laura)to put an end to this annoying feedback I've been getting lately.
--Clean house in preparation for parents' arrival on 26th
September 25th
--2pm--Meet new mom friends Megan & Kitty at Children's Museum for a play date.
September 26th
--Parents coming into town
--11am--Open Clinic Evaluation with PT/OT department at Children's Hospital to find out what kind of help Cara might benefit from.
--1pm--Appointment with Financial Counseling department at Children's Hospital to see if we qualify for secondary insurance to help with our insurance's lack of PT coverage and the mountain of bills we already have.
(Whew, looks like we have a week or so with no "commitments" except for story times, maybe)
October 10th
--12:45pm--Report to Radiology (1st floor) @ Children's **REMEMBER @ new campus** for Cara's CT scan.
--2pm--6 week post-surgery follow up with Dr. Winston @ Children's (3rd floor).
October 15th
--3pm--Well baby shots for Cara (no co-pay) @ Alpine Family Practice.
(another week or so "free")
October 25th
--12:30pm--Full evaluation with Developmental Pathways/Child Find; re: Qualification for reduced cost PT/OT.

I'm exhausted just looking at that! And, I'm sure as time goes on, more things will be filled in for the "gaps" that we have. Oh yeah, and that doesn't include putting aside time for more play dates, pre-K lessons and things like that.
Judy, I'm beginning to know how you feel...slightly.

Tuesday, September 18, 2007

C-A-I-T-I-E

I will admit to being slow. I just now realized that I can upload videos thanks to upgrading my Firefox browser, so here's a cute video for you all.

video

May Not Seem Like Much...

My new car, named Sally Subaru, taking her rightful place in the garage.
A few odds & ends that are getting donated. The Apple computer is Ben's co-workers and will soon be going back to her.
My clever organizational skills. It looks like a scene from Tetris.

But to me, it's just short of a miracle. I can finally park my car in our garage! Woot! It only took 3 weeks, unpacking hundreds of boxes, purging and donating to make it happen. Today, I had finally had it with parking outside and with a very rare burst of energy and determination, I attacked what was left in the garage making it impossible for me to get my car in. I neatly organized and stacked the few things that remain in the garage along the wall and the rest, I found new homes for. Oh, it will be so nice to be able to just pull into the garage and not have to bring kids and groceries in from the parking spots. Granted, it's only a difference of about 100 feet but, the point is, the garage is being utilized like it is meant to be--a home for my car. Winter is fast approaching and I'm looking forward to NOT having to shovel off my car before I can run errands. Oh, I'm spoiled now. Too bad that we couldn't have a 2-car so that Ben could enjoy this luxury too, but heck, he's hardly ever home, so he wouldn't appreciate it like I will.

The clearing of the garage also means that we are finally all moved in. I unpacked and put away the last box (minus a box of pictures that my parents are going to help me hang next week) yesterday and it was a wonderful feeling. Our place looks like home. Okay, honestly, it looks like a toy store blew up but we're working on that. Toys have declared war on our living room and have been winning but we are about to deploy the special ops. Once we reclaim the living room, life will be good. I'll be able to display some knick knacks and, more importantly, walk around the room without stepping on Kixs, plastic food or crayons.

We're home and we love it here. We love how quiet our neighbors are, we love the open floor plan, we love the grass and "quad" right out our front door and of course, we love our garage. Oh yes, and we love our property manager. She's the sweetest and, if we ever have an issue, she sends our cool maintenance guy right over. How's that for service? I can see us living here for a good long while, happily.

Welcome home, family, welcome home!

Thursday, September 13, 2007

Oh, and..

For those of you who have Flickr accounts, I have added new pictures to my profile. Please check them out and leave your comments!

Insurance Blues

For a long time, I've been a supporter of both equal-access public health care and a nationalized health care program for all Americans. I was rallying behind Bill Clinton when he put Hilary in charge of coming up with something economically feasible years ago. Now, faced with my own health care crisis (of the mini-sort), I am wishing that I lived in Canada, Australia or any country that offers free health care to it's citizens. The United States really needs to get on the ball. If we can't have nationalized health care because of the cost and putting the federal government further into the red, than can we at least have a "watch dog" type of organization to ensure fair and equal access to those paying top-dollar for private insurance plans? There are so many injustices and just-plain-wrong things going on that I wish someone was in charge of preventing. What exactly am I referring to, here's the skinny...

I called our insurance company today (Aetna) to ask about a claim that was denied when I truly thought it should have been covered because it was a simple clinic visit and we paid our co-pay at the time of service. So, I call up and speak to a Yolanda who informs me that the claim wasn't processed correctly and that she will re-submit it. I will get a final bill from Aetna after it's been processed again and may have to pay a portion if the $5K deductible hadn't been met prior to this appointment. Good, just what I wanted to hear. True, I wish we didn't have to worry about deductibles and co-pays but that's life. Gone are the days of covering my family members for free, no deductible, cheap co-pays and excellent coverage--only had that once in my life, while working at Baldwin Public Library in Birmingham, MI. There are days when I want that job back, just for the benefits. Anyway, I'm wandering...Next, I dared to ask about our plan's (Aetna Advantage Plus) coverage for physical therapy (PT) since Cara is going to require some to catch up on her milestones. This is where the dam of bad news broke loose. I was informed that our plan doesn't cover ANY (not one ioda, one dime, one session) of physical therapy unless the deductible has been met prior to any PT claims coming through. Now, thankfully, due to the $21K brain surgery and ER visit we have far exceeded our deductible this year so here is what Aetna will graciously cover:
-24 sessions of PT per calendar year
-$25 maximum per session to be paid by insurance
Whoa! Hold the phones, did she say a WHOLE 25 DOLLARS?! Wow, that's so generous. Now, while I have no idea what an average session of PT costs, I can almost bet the ranch that it's more than $25. I mean, when we saw the Nurse Practioner for 10 minutes for Cara's 1 week follow-up, $100 was billed to Aetna. Since physical therapy is a bit more hands on and involved, I just know that $25 isn't going to cut it. So, we're going to be shelling out some serious cash for every session that Cara needs and we will because we are going to everything we can to give her a chance to have the best quality of life--bills be damned.

Now, come next year, when we start all over with the $5K deductible, you have to wonder how in the world we will afford the PT. This question was on my mind too, so I asked Yolanda if there was a plan in existence (with Aetna anyway) that covers more, in terms of PT. She then transferred me to the sales department where I spoke to a gentleman who told me:
1. I couldn't change plans until we had been enrolled, with no policy changes, for 6 months which would bring us to Novemeber of this year.
2. If we wanted to change to a more inclusive policy, we would have to undergo the underwriting process again and Cara's hydrocephalus would be "exposed" and probably wouldn't be covered on the new policy because it would be deemed to be a pre-existing condition.
3. We are stuck with this policy and I just wasted 10 minutes of my time asking about changing.
I thanked him for his time and hung up.

The wheels in my head were turning and I was starting to get pissed off. I mean, what the heck is wrong with insurance in this country if the people who really need it (sick, poor) can't get it because it's either too expensive or because said insurance will not cover the medical condition that they so badly need coverage for? We pay just shy of $300/month for this insurance only to find out just how limited it is. I sometimes wonder why we even bother to pay for it at all except that I wouldn't want to be stuck with a $27K tab. It just bites (in lack of a stronger word to keep this blog at it's "G" rated status) that only the healthy can get good, affordable insurance these days. Yes, it's nice to have so that you don't have to pay for well-child visits and just in case something horrific happens but, when something does happen and heaven forbid, you need some special services, good luck! Hope you have a nest egg hidden under the mattress for such things.

Some would say to me that we should have sprung for a better, more inclusive health care package but, give me a break, who actually sits down, when selecting insurance, and says, "Gee, let's see how the coverage would be if Johnny needs brain surgery or Sally gets cancer." Nobody is that morbid. You get a plan that you can afford that covers the basics and you think life is good. Then your literature for said plan arrives, and you might read the little chart that explains the percentages of coverage and such, but you push it to the back of your mind--you're not going to need to know how much your plan is going to play for orthopedics because you're never going to need it, right? I don't want to go through life thinking about the worse case scencerio every time I purchase something, that's too exhausting.

Since I have discovered our fate due to poor insurance coverage, I've had to try to find funding from other sources, unless, we went to declare bankruptcy next year, which I'd rather avoid. I have a meeting with the financial counseling department at Children's Hospital on the same day that Cara goes in for her PT evaluation. In the meantime, I have to round up 90 days worth of pay stubs, bills and such so that our counselor can determine if we qualify. I have also contacted the county health & human services department to see if the state has any programs that might off-set our medical expenses. Short of having a fund raiser or setting up an account at a bank for donations, which will probably never happen, I'm fresh out of ideas. Of course, there's always payment arrangements, problem is, you have to have money to make those payments and things are already quite tight around the waist right now.

If we had nationalized health care like some other countries, while I may have to wait to receive some services, they would be free. Cara would get the treatments that she needs without us having to worry about affording them. What a wonderful thing that would be! Imagine that, everyone getting the care & services they desperately needed without having to be the next Bill Gates or Donald Trump. We claim to be a land of freedom, equality and opportunity and yet, there's an alarming number of people who an either uninsured or, in our case, under-insured. What's being done to help...not much at all. Some states are better at helping their indigent than others. Colorado just happens to be a pretty lean state in terms of social service programs. Just great!

My point...you just might hear that we've jumped ship and moved to Aussie-land. Move over, Sarah, we're moving in!

**OMGosh, this just might be the longest post I've ever written so, bless your hearts if you take the time to read it!**

Sunday, September 09, 2007

Our social calendar was so full!

Have you noticed that it's been weeks that I've posted anything? If so, I can explain---
Labor Day weekend (starting on that Thursday) saw us in Montrose in preparation for my brother Mike and bran-new sister-in-law's wedding. We had a rehearsal, rehearsal dinner (yummy, not good for the gut, Mexican food) followed by a beautiful wedding ceremony outdoors at a state park overlook (overlooking a reservoir with the San Juan Mountains as a backdrop) and concluded with THE MOST happening and fun wedding reception I've ever been to. Yes, me, the one with no rhythm and two left feet was on the dance floor several times and even did "The Train"! It was an absolute blast and I loved dancing with my husband (a very rare treat) and grooving along with family and friends, some whom I hadn't seen in years and years.
After the wedding, we had a brunch honoring the newlyweds and then, some social activities with some old family friends. Once everyone returned to their home city or state, things calmed down some and the girls and I settled into our role as dog-sitters for the rest of the week.
We arrived back in Aurora on Friday night to a condo flooded with unpacked boxes. Ben & I have been hard at work unpacking, setting up and weeding through our belongings. I am proud to say that I have a have fully set up kitchen, can get to my bed without tripping over boxes and dropped off a car-load of items no longer needed to Goodwill. How is it that you can start off a marriage with only the bare essentials and end up with way too much stuff? I swear, I don't remember buying most of this stuff. Did I sleep-shop?
Anyway--we are back and slowly, things are returning to normal. That said, I am hoping to schedule playdates with a few friends, visit the Children's Museum a few times and continue making our new residence feel like home. Yep, my plate is full once again, but would I have it any other way, probably not. Life would be too dull!

No, I don't play a neurosurgeon on TV...

But, I might as well as familiar as I am becoming with medical terminology lately. Let's just say that I've become a dedicated advocate for Cara and her medical care. We have survived surgery--$21K worth--followed immediately (seriously, we were home for a whole 3 hours) by an ER visit due to projectile vomiting, which, of course, stopped the moment we walked through the ER's doors. The diagnosis for said projectiling? Cara's brain and it's connected parts hadn't gotten used to the change (less) in pressure in her brain due to a working (thank goodnes, no malfunctioning) VP shunt. Her neurosurgeon said to give it a few days and see if she wasn't better. By golly, he was right! Thank you Children's Hospital for that lovely 12 hour wait in the ER to be seen by a neurosurgery resident, CT scan with the dolphins on the ceiling and chicken puppet, and $6K bill. You can't put a price on a peace of mind.
Since this episode, Cara has been doing wonderfully. I continue to be amazed at how quickly she recovered from a having something permanently implanted in her skull. Our little trooper only needed a regular dose of Tylenol for the first day and a half! She was back to her normal self--even a bit more happier and less fussy. She has started to do an "Army crawl" when she wants to reach something and is vocalizing up a storm. Still, she is behind developmentally--not crawling, walking, pulling herself up, etc. So, being the advocate that I am, I spoke with the Physical Therapy/Occupational Therapy (PT/OT) department at the hospital and we have what is called an open-clinic evaluation on September 26th to see which services she might benefit from. I also need to ask about a speech & language pathologist to work on helping Cara learn to talk. I am so excited to hear her say "Momma" or "Dada" for the first time. Hopefully, with some techniques and strategies from the PT/OT people, Cara will catch up by leaps & bounds and will continue to be the happy little toddler who always has a big smile on her face.
She also has a follow-up CT scan in October to check the placement and functioning of her shunt and then will see her neurosurgeon right after for a follow-up with him. So far, so good, so I am hoping this appointment will be brief.
Let's just say that we will know our way around Children's Hospital like it was our own backyard and I will be shooting off medical terms like Doogie Howser. I am determined to become just shy of an expert on all things related to hydrocephalus so that I am certain that Cara is receiving the very best care that she can get. Thankfully, I have found a few moms who have already been down this road of whom I can ask questions and receive advice. One such mom, Sarah, has been so very helpful and patient in answering my 50,000+ questions. She has a beautiful and amazing daughter herself and is also quite the knowledge source and advocate. It's so comforting to know that I'm not alone--that others have gone through this and their children are doing so much better as a result. It gives us hope for Cara, that the future will bring nothing but the best for her. But, even if she doesn't move forward from where she is right now, we are okay with that and will love her nonetheless. She will always be our Bubba (and Peanut and Cara Lou) and Lulu Bird (don't ask how Ben came up with that one) regardless.

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