I absolutely cannot believe that it is February.  I feel like a character in a soap opera who has been in a coma for 20 years, wakes up, and thinks they've been sleeping for 20 minutes.  The last time I posted anything here was in June.  We were still at Ability Camp and next thing I know its February!

Where did the time go?  Mostly, I guess, into a little time sucking machine named Anabelle
Aidan's little sister,  Anabelle was born on October 25, 2010, and pretty much everything from three months before she was born until three months after she was born is a big blur.

Last week, when I realized it was almost Spring, I decided to look into going back to Ability Camp for more conductive education and HBOT. Unfortunately, I found out earlier this week that the May-June  class is now booked!  I can't believe it!  I was informed that we need to book by December to be sure that we get the class we want.  Wow.  December?

As much as I would love to be able to plan that far in advance, there's the little problem of paying for the therapy and the trip.  I figure that the trip last year, including travel, lodging, food etc. probably cost about $15,000.00. We were able to cobble the money together due to some fortuitous events.  First,  an old high school friend recommended Aidan to her friend, who raises money for kids when he participates in a local triathalon.  We got about one fourth of the money that way.  Then, my mom and Dad settled (with my help) a car accident lawsuit, so my Dad kicked me about 5K from his settlement and my mom offered to pay for the lodging.  None of this was in place until April, when we finally decided to go for it and attend Ability Camp.  I guess we just got lucky that a space was still open.

This year, Aidan's summer therapy is being funded by a small legacy he received from my late grandmother in her will. We did not get this money until late December.  It is really not enough to pay for camp and lodging and travel, but it was enough for me to start planning with the hope that we could come up with the rest.  But oops too late.  So now I am trying to figure out if we can afford to take him to a place in Florida (Conductive Education Center of Orlando ).  The  camp tuition for 8 weeks of conductive ed is cheaper than Ability Camp but he won't get any Hyperbaric Oxygen.  The problem is that the facility is located in a suburb of Orlando, Florida and the lodging options are ex-spen-sive!

I'll be traveling with Aidan and his sisters Abigail(4 yrs)

and Anabelle (will be 9 mos) as well as my mother.  My father and my husband, Brian, will also probably visit, so we need a house or apartment that is furnished and can accommodate all of us for 8 weeks.  I recently learned that Orange County, FL does not allow vacation rentals.  Most of the rentals are in large vacation rental communities near Disney and the theme parks, which is about 45 minutes away.   Apparently, people that travel to Disney want "Luxury Accommodations" because it seems that's all they build in those parts.  When I was a kid I thought the Polynesian Village was about the fanciest place on earth, with the monorail going straight through and all.  Apparently,  times have changed.

Although Aidan's results at Ability Camp were not as dramatic as some of the children in his camp class last summer, I think the benefit was enough to continue.  So here I am again, trying to plan a therapy trip and to figure out how to pay for it.  I know as Abby and Anabelle get older,  planning and paying for these trips will get ever more difficult.  What is a mama bird to do?

We've finished out fourth day of conductive education at Ability Camp in Canada. Mom, Aidan and I arrived after a three day drive straight up through the United States, entering Canada at Port Huron, Michigan.  We drove through Detroit.  I've never been to Detroit, but its problem of urban decay and blight is sometimes discussed in connection with New Orleans' blight problems, if not directly compared to it, and I have to say, that Detroit looked sort of how I imagined it, although the downtown was surprisingly vibrant on the Sunday evening that we passed through.

Other than Detroit, the highlight of the border crossing came as we approached the border check point and realized that I had misplaced my passport. After driving for three days, I came very close to losing it.  The immigration officials were very nice about it and let us through after asking a few questions, and without even looking in our car.  As it turns out, it is the U.S. government that wants it citizens to have passports.  Luckily, when we arrived at our hotel room in London, Ontario, we found the passports.  Whew. . . . .

Were it not for the use of the metric system in road signs and gas prices, it would have been hard to tell that we had crossed the border at all.  In London, we stayed at a Quality Inn, which was across the street, more or less, from a WalMart. Since arriving at Ability Camp, other differences have emerged, most notably at the grocery stores, where the prices are very high, the product packaging is written in English and French, and the store personnel are unusually friendly.

Its actually day one of week three now and I'm a little disappointed in Aidan's ability to participate in the activities at Ability Camp.  The highlight so far has been that one of the moms has a potty chair called an aquanaut, that she brought from home and Aidan will actually sit on it.  He has had success twice in two days.  For two years or more I have been trying to find a potty for him.  I finally bought one last year but it has not worked out that well.  Unfortunately, the Aquanaut retails for around $700, so I am holding out hope for finding a used one somewhere.

This trip is probably going to cost about $10,000.00 or more, and we raised less than 1/4 of that in the recent fundraiser sponsored by rick Crozier so, I really hope its worth it.  We'll see.

I know its been a long time since I've posted anything here.  When I am away from my computer, I often compose entries in my head, but these thoughts are fleeting and by the time I actually have time to write them down, they are long gone.

So, although I hope to become more regular with my entries (just in case a random person happens upon this blog) for now my more realistic goal is quick updates.

This week (and last and next) Aidan is participating in "intensive" suit therapy. More info on this type of therapy at his website, www.aidansanswer.com.  This is his  third time doing this type of therapy, which consists of pretty traditional PT, some of which is done while wearing a "suit" which provides support and resistance.  The sessions are three hours a day for three weeks.  I really think that to be really helpful, he should have three hours or more of therapy 365 days per year, but these intensives are about the best we can do.

A few months ago I learned that the provider closest to us (30 minutes away in Mandeville) accepts our insurance and that our particular insurance (BC/BS Fed) counts each three hour therapy visit as one visit.  (we get 75 per year total for OT, PT and Speech)  It seemed like a no brainer to me to get 3 hours of therapy for the price of 45 minutes, and given that I felt that his once weekly sessions of PT, OT and speech were a waste of time and co-payments, I took him out of all of these therapies and decided instead to try and do four intensives this year.

Unfortunately, before I figured all of this out I had already burned through about 25 visits (many of which were charged by his chiropractor billing for massage, but that is another story).

As with ever other therapy we have ever tried with Aidan, I doubt that we sill see the drastic improvements that others claim to see, but I still believe that even small incremental improvements will be helpful in the long run. I'm hoping that this intensive will help prepare him for the 5 weeks of conductive education that he will start in Canada on May 24th. 

Hopefully I'll have some good news to report from Canada.

On April 18 of this year, Rick Crozier will be competing in the New Orleans Ironman Triathalon.  Each year Rick raises money for children as part of the race and this year he has chosen Aidan and another little boy.  For each donation made, Gulf Coast Bank will match the funds up to $150.00, so this is a great opportunity for Aidan and we are very grateful to Rick.

To make your pledge, please go to www.makethebankpay.com and fill out the form.  Please pass this information along to your friends and family.

As always, we appreciate your support!

I know its been a while since i have posted anything, but this post is going to fall into the category of "whatever is on Aidan's mom's mind."   Tonight the Saints' winning streak ended with a loss to the Cowboys.  I' sure that there are a lot of purely football reasons that this was bad.  But, as we all know, sometimes sports are a metaphor for life.   For those of you who live outside of the greater New Orleans area, the Saints' heretofore, un defeated season, may have just been a curiosity.  But, I can tell you that for us, it has been so much more.  It has, I think on some level,  been a validation that we are worthy of existence, that we are part of America because we have a winning football team.  True or not, this is not really the pont of this entry, so moving on. . .  

I will start by saying that I generally dislike all things Texas. 

I went to TCU for college, and I wish them all the best in the Fiesta Bowl, but I have to say that in general, and in retrospect (nearly 20 years since I graduated) there is not a whole lot that I can say that is positive about my experience there (there being at TCU).

The myriad reasons that I disliked TCU notwithstanding, the main reason was that I just was not of the correct socio-economic class/geographical class, to be accepted  into the "in crowd" at TCU.  I am not going to go into great detail on this subject. However, I will note that I grew up in what would probably be classified as an upper middle class community, where as a child, the parents' of my friends were doctors, lawyers and business men.   Yet, when I arrived at TCU, and throughout my matriculation there, I felt as though I was a red haired step child from the wrong side of the tracks.

So I generally disliked college. Too bad for me.  However, there are a few specific incidents that stand out in my mind whenever I think about my general dislike for Texas. 

The first happened when I was a student at TCU.  So many things happened there that upset me and made me feel terrible about my self, it suprises me that I even remember this particular incident.  What I remember about it is this:  I was taking and astronomy class to fulfill my science requirement.  I am admitting that I am a terrible math student and took this class to avoid any math.  I cannot exactly remember how or why the comment was made, but I think I was joking about the possibility of not passing the class, and a girl, who was very blond and very from Texas, and knew where I was from, looked at me and said something to the effect of, "well what are you going to do from here? Just go back to the swamp?"  I know its is hard to tell from the description here, but I can promise you that the comment was intended to mean that being from Louisiana, I must be stupid and have no options other than to go home and make a living in the swamps. Ok, so no big deal. . . college times. . . . get over it.

So now, its 2005.  I'm 37 years old and at least 8 months pregnant with my first child.  I have evacuated from my home and the reports that I have heard indicate that not only my home, but my parents' home and basically everything that I have ever known in my entire life has been destroyed by flood water.  I am sitting in a base baseball stadium in Houston.  My husband has decided that we should take advantage of the discount that has been offered to "Katrina Victims" to attend a baseball game. He gets up to go get a beer or some food or whatever, and I hear the three or four-thirty something men sitting next to me discussing how terrible it is going to be for their kids' football team, if some refugees from New Orleans wind up in the schools there, and playing  against their kids in football.  This all happens days after Katrina, and I can promise you, that had I not  been very pregnant, I most likely would have had several drinks in me by then and would have  told them off.  But I didn't.  I just sat there crying, thinking how insensitive their comments were.

These two incidents are merely illustrative.  There are many more reasons, especially from college times, that I dislike Texas, and save  for a few good friends, that I made at TCU,  who just happened to be born in the Lone Star State, I generally despise our closest neighbor. 

Unfortunately, just when the Saints were somehow validating New Orleanians in general,  we had to lose to the Cowboys.  I know its just football, but let's be honest, its really more than that.  

Nevertheless, the Saints' record notwithstanding, people in Louisiana were found to be the most happy of all US citizens in a poll released this week.  My opinion on the reason for this finding is the subject of another post.  I read a few comments on this finding, the gist of which was we are too stupid to know any better and that's why we're happy.   

  But that's OK.  We know better, even if you don't. . . but I still hate the Cowboys.

Aidan's cookbooks have arrived!!!!  Last year, our friend Glynis decided that to help us bridge the gap until our next big fund raiser for Aidan, she would put together a cook book to sell for this Holiday season.  The books contain over 200 recipes submitted by friends and supporters of Aidan.  There are old family recipes, recipes for entertaining, New Orleans favorites, drinks, desserts and everything else. We are selling the cook books for $20, plus $3 dollars for shipping. The timing is good, given that we have run out of funds from our last fund raiser and we have also exhausted our benefits coverage for the year for Aidan's traditional therapies (OT, PT Speech). 

If you would like to buy one, or if you want several to sell to your friends and family, you can send me an e-mail at cbgannon@bellsouth.net, or aidansmom@aidansanswer.org and I'll give you the scoop.  You can also order one through the Friends in Need Web site:  www.friendinneed.org and pay using PayPal.  When you go to the web site, click on initiatives and you will see the cookbook listed on that page.

If you live out the New Orleans area, I'm sure you'll find some interesting recipes straight from New Orleans kitchens to impress your friends.

As it turns out, we don't know when our next big fund raiser will take place.  Glynis was the driving force behind the last one and she is about to start treatment for breast cancer.  I ask that you all send her good vibes and wishes for a speedy recovery, and if you are so inclined, keep her and her family in your prayers.

Yesterday, we went for an evaluation to start a new neurodevelopmental therapy program with Aidan.  I describe this type of therapy briefly on Aidan's web site: aidansanswer.org. 
 
We first tried this approach over a year ago, choosing to have him evaluated through Hope and a Future, which is run by Linda Kane.  Rather than having one location, she and her trained band of parents, perform evaluations and set up home therapy programs for parents to follow. I learned through another source, that Linda used to work at the institutes for the achievement of human potential (IAHP), before setting out on her own.  I originally chose H&F because it is far less intense than the IAHP program, and because at the time of Aidan's original evaluation, Linda was seeing clients in Baton Rouge, LA, which is a little over an hour away.
 
For about 6 weeks, Brian and I tried to work the program, but then things fell apart when we got busy.  I honestly do not know how parents ever really fully implement these programs, especially to the degree required by the people at  where all of this started.  Unless you are wealthy and can afford multiple, full-time helpers, have a large, dedicated family who will work for free or are tied into a huge pool of volunteers, it seems almost impossible.  We have the added issue of Aidan absolutely hating the therapy.  It is really a very passive therapy, and it does not hurt him, but he hates it nonetheless and cries the entire time.

Nevertheless, we are going to try again.  We have some help in the form of Aidan's former babysitter, who has now moved in downstairs. She is living in our downstairs apartment rent-free and is supposed to be helping us, but between her full time job, school and boyfriend, I fear that she will not be able to devote the time to the program that we expect and require.

The reason that we are going to try again is Jasmin.While Aidan and Brian we at Miracle Mountain this past summer, they met Jasmin and her mother.  I'm not sure of Jasmin's current age, but I would guess she is six or seven. From what Brian related to me, she was born with cerebral palsy, and at age two, had the function of the infant.  When she was two, her parents took her to IAHP and started their program.  They have been very dedicated to it for several years, and are convinced that the improvement they have seen is directly related to the IAHP program.  I saw Jasmin while I was at MM, and she now walks fairly normally, but doesn't say much.  Brian says they have achieved all of their motor function goals and are now working on getting her more verbal.  Jasmin's mom convinced Brian that Aidan could really benefit from this therapy, so here we go again. Wish us luck.

[UPDATE: about a week after we had the evaluation, Aidan's babysitter decided that we expected too much of her time to work with Aidan (this was despite the fact that we had not really started the real program yet) and she moved out.  As a result, we haven't started the program and are still trying to figure out how to fit it into our schedule]

Before Aidan started school a few days ago, I met his new teacher and others who will be in charge of his care and learning. Aidan and I were the only student and the only parent at the meeting. The rest of he pre-K 3 class met for a group orientation the following day.

 

It was a great meeting. His teacher, the special ed teacher, the aides and even the principal met with he and I, for several hours. They thought he was adorable, they were impressed when he properly identified a somewhat abstract animal figure in the classroom decor, as a whale, they promised to do their best to meet his needs and to give him a positive experience at school.

Getting such individualized attention is a great thing. Having the people with whom you plan to entrust your child, be impressed with and interested in him, is a good thing too. But then there’s the reason for it. Aidan and I were invited to a special meeting because he will be the only special needs child in his class. The assembled educators were not impressed with his skills because they were exceptional, but, I think, because they expected much less from him. This is not an unusual reaction for them to have had. I have realized that there is an unspoken qualifier floating around Aidan that only I hear after every compliment and kind word that he receives. This is what it sounds like:

Aidan is so smart!. . . (under the circumstance)

Aidan is so sweet . . . (under the circumstances)

Aidan is so cute . . . (under the circumstances)

I can’t believe how well Aidan is doing. . . (under the circumstances)

Although such compliments should fill a mother with joy, they often elicit the opposite response in me. This is especially true when the compliment comes from a well-meaning, casual passerby, who is unaware of condition. All maternal bias aside, Aidan is a beautiful child, and I know this to be true, because everyone tells me. Almost without fail, whenever Aidan and I are out and about, someone will stop to comment on his physical appearance. They will say how beautiful his eyes are, they will comment on his skin and hair, they will notice his smile. Every now and then, someone will go a step further and say something like: "you are so lucky to have such a beautiful child." That’s the one that really gets me. I wish I could just say, "Lucky? really? Let me tell you just how lucky I am." But I just smile, say thank you, and go on my way. After all, they mean well and any other response wouldn’t be right, under the circumstances.

It has only taken 2 years, but I have finally finished aidan's website and this accompanying blog.  I plan (hope) to provide updates on Aidan here, but undoubtedly will also include entries about other topics as well. I may back track a little and write about things that have happened in the past,  therapies we have tried, etc; not sure.  I don't really know how this thing works, and Aidan's website isn't very fancy or user friendly i'm afraid, but at least its done.  Right now he's in his second to last day of suit therapy.  I've been sitting here trying to get this thing finsihed, so now I better get in there and help.  More to come . . . cbg