Our third stop was again with friends who have close ties to Italy (their family runs a touring company that takes people on gastronomic tours of Italy). THEY mentioned Jamie Oliver.

http://www.experienceitaly.com/home.php

So today, while I had some down time, I thought I would check out Jamie Oliver's great Italian Escape series on YouTube. I am hooked.

If you like: British accents, Italy, Food (Italian Food specifically), Travel, or all of the above with a dose of humor - you might get hooked too!

Here is part one of episode one:

Whenever we have gone out to eat with Annie, we have turned down the offer of a highchair because she lacked the trunk strength to sit up un-aided. She would just slump over the side of the chair, unable to get herself upright.

That means we either had to have Annie-lu in her stroller or we (the wife) had to hold her throughout the meal.

Our favorite sit-down restaurant at the Zoo has a strict no-stroller policy and two or three times we have had to explain that our daughter is disabled and needs her stroller. They have always been very accommodating but it is sort of a bummer to have to have to "go there" with the whole disability thing when all you want is lunch.

Well CHECK THIS OUT:

I know, it's a lousy photo taken with my crummy phone camera - but it is a MILESTONE!

That's right, my friends. Last Sunday night, on our way back from LA, we stopped for dinner and got a highchair. Annie TOTALLY ROCKED IT. In fact, she rocked it so hard that she spent the entire meal happily shouting, screeching and screaming at the top of her lungs.

I spent much of my meal with a fork in my right hand and covering her mouth with my left.

And I wouldn't have it any other way.

Having a two-year-old in a wheelchair presents some logistical conundrums. First of all, I have heard many parents lament the point at which their child is too big and/or independent for a stroller - the main reason? THE STORAGE. A good stroller is almost as good as a shopping cart; you can hang your bags on it and there is a basket underneath for all manner of gear and whatnot. I don't know any parent of a two-year old who would want to do without their stroller. And yet, here we are.

If Annabelle is in her wheelchair, what are we supposed to do, push an empty stroller beside her? That's sorta silly. Then again, neither the wife nor I want to spend the day with a diaper bag hanging off our shoulder. Imagine taking your two-year-old to the mall, the zoo, anywhere, without a stroller . . .

So we picked up this little bag at Target:

It's a perfect fit for the chair but it is about 1/4 the size of a diaper bag. We can fit a package of wipes, 3 diapers, a blanket and maybe a couple bags of snacks. We are DEFINITELY travelling light now-a-days. I am not sure what we will do when we have to start carrying cathing supplies . . .

Another thing that is challenging is time-management. Again, imagine taking your two-year-old to the mall without a stroller. You would either carry them or wait for them - like herding a cat. In Annie's case, we actually push her from behind. imagine pushing your toddler from behind around a mall. Okay, it's not exactly the same but it isn't completely different either.

A couple of times, Annie protested and grabbed the wheels to stop them. Of course, daddy weighs about 10 times what she does so it was no contest. When Annie isn't resisting being pushed, she lightly rests her hands and/or forearms on the wheels as we are "zoom-zooming" from store to store. At the end of the day, everything below her elbows was black from the grime coming off her tires.

This is not a complaint, by-the-way. We are TOTALLY STOKED about the chair - we are just going through an adjustment period.

The errands went just fine. We got all the usual stares but more than one person exclaimed how cute they thought Annie looked in her chair. One stranger in the elevator looked down and said, "Well that's a neat stroller!". We are pretty sure he actually thought it was a stroller.

So that's that. We are parents of a two-year-old flying without a stroller or diaper bag. Sorta like acrobats without a net.

We're hard-core like that . . .

The day started with an abdominal xray and ultrasound at 11am. Then it was time for the clinic at noon.

The SB community is a small and friendly one. We bumped into another SB family in the waiting room whom we knew and it was nice to sit and briefly catch up. We told them about our struggles to get Annie a stander and they suggested another local organization we could contact for help so I added that to my notes.

So here is the run-down:

Nursing:

Each clinic has a nurse who sort of acts as the den-mother. Nurse Terri came in first and quizzed us on all the loose ends from our last visit back in February. All clear.

Physical Therapy / Occupational Therapy/ California Children's Services:

These gals visit all at the same time. They confirmed that we had adjusted Annie's wheelchair correctly and asked all sorts of questions about her development etc. Annie got straight "A's"

Urology:

The ultrasound and xrays were for the benefit of Urology. The doc confirmed that they looked fine - Annabelle does not have any a-typical problems with her bladder or kidneys. This is a big deal since from the day Annie was born, we have been pressured to cath her but have resisted. We know that the typical age for potty-training is approaching and since Annie basically does not have any bladder control, we have been preparing ourselves to accept a cathing regime.

The doctor confirmed that the time has come for cathing and we agreed. We have an appointment in November to go in for cathing training and we will start cathing then. Three months later, we will go in for a check-up to confirm that everything is going okay.

One of the things that commonly goes hand-in-hand with cathing is a prescription for Ditropan. Basically, it relaxes the bladder so that it will hold more urine which along with cathing allows the patient to better control voiding. So the doc gave us a prescription for that.

Neurology:

Did not see and don't need to for 12 months

Orthopedics (spine):

Did not see and don't need to for 12 months.

Orthopedics (feet):

We actually don't see these guys at the Spinal Defects clinic but we have an appointment to see them this Thursday morning.

So that's about it! We were out of there by 3pm - shortest clinic day ever. The GREAT news is, we don't have to go back for a WHOLE YEAR!.

We were thrilled with the good news from all the doctors, thrilled that we got in-and-out in 3 hours and thrilled that we don't have to go back for a year!

Thank you for all your prayers and support!

By the time we got to their home, Annie was conked out and went straight to bed.

Sunday morning, I sat Annie in her chair, made a few adjustments to the straps and let her loose in her wheelchair for the first time. The first thing she did was wheel over to an end-table and yank a place mat - sending everything on it crashing to the floor. I turned to my friend, Mike, and said, "Well - she's never done that before. Clearly there is a learning curve involved here . . ."

We went to church and then met up with some friends in Glendale for lunch. So now, for the first time, we were confronted with; "Should we take the wheelchair or leave it?" We decided to take it. Keep in mind, this is the first time we have ever had Annie in public - in wheels.

The WC actually has a mommy-bar that can be easily attached so you can push the chair like a stroller. We call stroller-time "Zoom-Zoom" while we call Annie-powered time "Go-Go". We had a great lunch with friends and spent some time walking around shops.

Annie was all dolled up for church and cute as can be. Not-to-mention that the world's smallest wheelchair has it's own cuteness factor. So there we were, zoom-zooming from store to store and go-going once we were in the stores.

People stared.

MOST people stared.

We sat down at a Starbucks and were chatting when one of our friends scowled over my shoulder and mumbled, "Take a picture . . ."

"What's going on?" I asked.

"That man is just standing there staring at Annabelle in her wheelchair".

So it starts.

Frankly, staring is not a problem for us. We have had 2+ years to get used to the idea of Annie in a WC - strangers are caught unawares. I would probably stare too (hopefully subtly). We had a conversation about how staring strangers is just part of our new normal. Let's just face it, (and I will be biased here) we have the cutest little girl in the cutest little WC - people are going to stare. And it's fine.

But I will tell you what is not so fine . . . .

2 or 3 people walking by would stick out there lower lip and make a pitiful frowny-face. And that steams me. Now granted, these people did not expect to encounter Annie today and so their reaction is knee-jerk (emphasis on the JERK).

But that wasn't the worst of it . . .

4-5 people not only made the frowny face but audibly uttered a pity-ing "Awwwwwwwww . . . .". just so you know, when you see a disabled toddler, put on your frowny-face and let out an "Awwwwww . . . . " you might as well yell out "I could use a good kick in the yarbles right now! Unless you don't have time and prefer to back-hand me in the chops".

But . . . then again . . . they were caught unawares . . . and it is just their natural knee-JERK reaction . . .

It's our new normal - to be stared out - to have social misfits frowny-face and "Awwww . . .". It's not okay but it is what it is and we will choose to spend our energy enjoying ourselves as a family instead of trying to educate the entire population of So. Cal. on proper disabled etiquette (we might as well try teaching the dawg algebra).

But it is an adjustment. And it is hard. And if we are honest, it is somewhat painful.

But it's life - our life.

And we are going to strive to make it beautiful for our little poka-nut (and teach her to steer away from the knee-JERKS as best as she can).

The boy in the blue shirt is Anthony, who has SB. The other two are his brother and sister:

We have been out of touch for about a year and she had not checked my blog in months (no hard feelings!). For some reason, she felt compelled to check my blog a couple of weeks ago and saw that we were having trouble getting a wheelchair.

As it turns out, her 4-year-old son with SB had grown out of his first wheelchair and they were getting his second wheelchair in a weeks time. They wanted to know if we wanted their old wheelchair!

I called her immediately and she said, "There is only one problem; my son has a kyphosis of the spine so the back of the wheelchair has a custom cut-out to accommodate it".

The hairs on my arms stood up as I explained that Annabelle has a kyphosis of the spine and she needs a wheelchair with a custom cut-out! When I got off the phone and told Holly the news, she burst into tears.

We agreed to meet up this past Sunday evening to see if the chair was a fit. The Friday before we were to meet there was a change of plans and Mrs. Nunez wanted to meet Saturday afternoon (while Holly was at work). I decided not to tell the wife of the change . . .

So our Insurance denied coverage for the equipment.

We applied for SSI and were denied.

I changed our insurance plan to an HMO (our last plan was no longer offered and this one was the only one without a pre-existing condition proviso). The new plan only covers equipment 50/50 with a max of $2000. We need $7000 worth of equipment so that wasn't much help.

We applied for Medi-cal and that application is still in process.

We applied for Shriners and that application is still in progress.

We applied for California Children's Services and THAT application is still in progress.

We shared our story with our Sunday School class a couple of weeks ago and they almost immediately offered to help raise funds and/or find the equipment needed - but we asked for prayer instead.

That's when someone who follows my blog sent me a message . . . (to be continued)

It's funny - when I wrote the first post about Annie's splits, I couldn't bring myself to post actual photos which is why I used a random photo I pulled off the net. So I started thinking, why was I not comfortable showing photos then but I am now? I came up with three levels of openness:

Freaky: These are the things we have been through with Annie that make our knees knock and tie our stomach in knots - surgery, stitches etc. These things we talk about in generalities - we do not take pictures because it's all too heavy.

Weird: These are the things we talk about more openly - we may take photos but we don't show them (ie; the gymnast post) because whatever it is, it still weirds us out too much.

Life: Over time, some of the weird stuff just becomes stuff - daily life. Things we have gotten used to and take in stride. These are the things we are comfortable talking about and posting photos about.

Then it occurred to me: I wonder if a post like this (one where the wife and I have gone from "Weird" to "Life") totally freaks other people out when they see it - the same way it freaked us out the first time we saw it.

Well, if it does, welcome to our world.

Then it occurred to me - this is the first place people can turn around if they have made a wrong turn - they put these booths here on purpose to take advantage of wayward motorists. I am being intentionally screwed here.

(I am still not ready to take up running again)

The books focuses on the Comanche plains Indians and on the life of Cynthia Ann Parker. Cynthia Ann was a white settler captured by the Comanches as a child who grew to fully adopt the life of the Indian and became known as "The White Squaw".

Two things really stood out to me:

1) According to the author, the Comanche tribe was probably the most lethal fighting force in the world when it came to mounted warfare.

2) The clash between Hispanic and later, white settlers, with the Indians was probably unavoidable. At the time settlers were engaging various Indian tribes, the settlers were about 4000 years ahead of the Indians in terms of technology and "civilization". Imagine if you were transported back in time to the year 1990 bc amongst a nomadic people - you would probably consider them fairly savage.

This is not to say that the Indians did not have many admiral qualities or that their way of life was devoid of anything valuable. It would also be a mistake to think they were any less intelligent than the settlers they faced - but the cultural gap between the clashing cultures was so wide and occurred at such a time (15th to 19th centuries) that warfare between the two was probably a given.

Most of the book takes place in Texas and references current landmarks and cities so anyone interested in Texas history would probably find this book interesting as well.

Highly recommended.