Too Much to Write

I have gotten so backed up on blog posts, and we have so much going on, that I don't even know where to start. So I have decided I am not going to start, at least not tonight. Just wanted to check in and let you know that we are still here, and everyone is healthy and happy.

The madness around here stems from two major issues. First, Trevor has been working extra shifts to make up for my lack of income, and secondly, I am on a major therapy binge. For the last year I have been compiling a list of therapies requiring travel or other significant time dedication that I wanted to sample before the baby arrives. A couple of months ago I realized that June is quickly approaching... thus the binge. In the past month Trevor and I have traveled to Philadelphia and St. Louis and later this month we are even heading out of the country. We've attended seminars, seen new doctors and therapists with special training, adjusted Fletcher's diet (well, it's a work in progress), and have basically (finally!) embraced the role of ultimate specialist trained in Fletcher Smykay.

I make no promises, but hopefully I will make some time in the coming weeks to post a little about all of that, and more. In the meantime I will leave you with Fletcher's mugshot, a.k.a. the home-made passport photo I took for Fletcher's Visa application for said out-of-country trip.

Wordless Wednesday: Late March Snow

Cerebral Palsy Awareness Day

In honor of Cerebral Palsy Awareness Day, there is a sweepstakes going on over at "Life of Logan." Check it out, follow the rules and enter to win a couple of pretty cool prizes, including one from my friend Melanie.

A few quick facts about Cerebral Palsy:

- The average prevalence of cerebral palsy is about 1 in 278 children. This first report of the prevalence and characteristics of CP, the most common cause of motor disability in childhood, are from Georgia, Alabama and Wisconsin. Can you even begin to imagine the numbers if there was a national surveillance?

- Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

Resources: Centers for Disease Control (CDC) and Reaching for the Stars (RFTS)

Copying Coping

I've mentioned in past posts that through ABR I have met some really great moms to other kids with CP, right? And in particular, I have had the good fortune to spend some time with one such mom named Katy, who goes by the name Bird on her blog, yes? Well, as I have done in the past, I am totally freeloading off one of Katy's recent posts on coping when you find out your child is going to be disabled.

Normally, I may feel a little bad about totally mooching off her post idea (not that the rest of my posts are so spectacularly original or anything), but, you know, it's late, I'm tired, I am long overdue to post, it is a great topic, and Katy herself was inspired to write it after reading a post from Melanie (another awesome mom I've met through ABR).

Katy writes the following about her son Charlie:

These days I think I can honestly say that Charlie himself causes me no pain. Being a mom to a disabled child is fine by me. Do I hurt for him sometimes? Of course, but my hurt is that other people won't see him as I do. I ache that the doctors are more concerned with sitting up than with the devilish grin he can give. I hate that people are worried more about walking than with his amazing giggle. I am sorry that people will be slowed by the trappings of disability and won't get to know the Charlie that I know.

This is exactly how I feel about Fletcher, at least the vast majority of the time. Thanks, Katy, for giving me the words and also the incentive to post them (amazing how I find cut-and-paste posting is so much less intimidating than, I don't know, completely original thought).

I also can relate to the part in Katy's post where she wonders if her past experiences were a way of God preparing her to be a mom to a child with special needs. I have no doubt that is what happened to me. Unlike Katy, I didn't have any prior experience with kids with special needs, volunteering, or really even praying regularly for that matter (all three of those have increased tenfold as a result of Fletcher, though). Instead, I think I was prepared by enduring isolating circumstances.

One of the toughest things I think moms of children with special needs face is a sense of isolation. Not many people can relate to what you are going through, and, afraid they will say the wrong thing, people don't really talk about it (and I don't blame them, I was one of them, once). My version of parenthood is so diametrically opposed to the "typical" parent experience that it becomes hard to relate to other moms at times. This is nothing new for me, however.

Nothing about Fletcher, from his conception, to his birth, to his homecoming, etc, etc has been typical. It took us two years and four IVF cycles just to conceive Fletcher (and even the cause of our infertility and the cycles themselves were atypical... we were outliers of the misfits!). Then I develop a condition that only half of one percent of pregnant women get. Then Fletcher is born so soon... and you know the rest. I don't recount this here to garner sympathy, rather I am trying illustrate the point that I have gotten plenty of experience of being "not normal" when it comes to children, and I really feel like it has prepared me to have a child that isn't like the others. Just another way perspective changes everything.

Second Anniversary

Today is the second anniversary of the day we got to bring our precious baby boy home from the NICU, exactly three months after his birth and two weeks before his due date.

Many people talk about how the most nerve-wracking car ride of their life is the one bringing their newborn home from the hospital. I say try bringing home a 4 pound three-month-old who can barely fit in the car seat and is on supplemental oxygen and an apnea monitor!

And lest you feel like I am exaggerating about barely fitting in the car seat, here is a picture from what us NICU grads know as the "car seat test." Notice how the chest buckle is right up against the crotch-latch. The baby has to sit in the seat and not set off an alarm (apnea or bradycardia) for the greater of an hour or the length of your commute home. Our nurse commented on how serious Fletcher looked during this trial. I had to remind him that us Smykays take our tests seriously (which is even funnier if you know my husband).

Today is also a big day for Smykeeney Baby. A link to her blog is in the right-hand margin, so go check it out!

Wordless Wednesday: Grandpa

ABR: First Satellite

We headed down to Plano, Texas this weekend for our first "satellite session" for ABR. The main ABR center we attend is in Montreal, but for ease of travel, those in the program only have to go to Canada for one out of the first four training sessions that are mandatory in the first year of the program. The other three training sessions (which do not include evaluations by Leonid Blyum) may be done at various satellite locations available across the US. We chose to go to the Plano location because Trevor's Dad, Aunt and Uncle live in the neighboring city of Double Oak.

We planned to fly down to DFW and rent a car for our stay, but because of passenger loads and timing (since Trevor is a pilot, we get to fly for cheap... but it is only standby, so we risk getting bumped) we ended up driving instead. Luckily Plano and Double Oak are both on the north side of Dallas, and my hubby has a lead foot, so the drive is under seven hours. We timed it so Fletcher took his nap during the drive (3.5 each way... he certainly loves to sleep in the car!), so everything actually worked out great.

I have to say, I couldn't be happier about the training. Due to a couple of last-minute cancellations, there were only four families attending this particular session, and with two session a day that meant only two families per session, which means lots and lots of undivided attention with the trainer, who just happened to be Gavin, the man who did the initial evaluation of Fletcher in Montreal. I have a huge thirst for knowledge, so you better believe I took advantage of that time and really feel like I have a good understanding of how ABR will help Fletcher. That said, I am not going to type it all out here, but for the most part my posts from Canada in October explain the concept.

Speaking of concept, since we learned about that and the technique in the fall, the main purpose of this satellite was to practice the technique, get answers for any questions or problems we are having implementing the program at home, and to learn a few new exercises. Fletcher's new exercises involve the posterior neck, lateral chest, shoulder edge, and top of the head. Gavin also made us foam pillows to use for each exercise in place of the towels. Apparently, once you get used to the technique the foam pillows are a more effective tool, but towels are more forgiving, so they are used for the initial training.

We also got some exercises for the ABR machine. According to the ABR Canada website:

The main purpose of ABR machine is to enhance the number of ABR hours the families are able to perform. Typically the maximum number of ABR hours the families are able to do manually is about 20 – 25 hours a week with the average performance being around 15 hours weekly. That number of hours is most often good enough to demonstrate the efficiency of ABR Method and to bring consistent developmental progress for a CP child. However, in order to speed up the rehabilitation process, ABR machine brings the possibility to find extra reserves for working ABR hours.

The use of the ABR machine permits to increase substantially the number of hours clocked in. The machine is able to act as the second and the third provider and to extend effective ABR hours by using the reserves of the child’s daily livings – delivering ABR impacts in parallel with other routines (feeding; TV watching, sleep etc.)

Using the Machine to Apply ABR Technique while Feeding a Bottle

I am excited about the increased hours we will be able to achieve using the machine. While I know the manual exercises are the most efficient, and are the only means of applying the technique to areas of the neck and head, I also know, because of the baby on the way, that reaching our target hours for ABR will be difficult this summer (we didn't even meet our target this winter, without a new baby around). We will still aim for our goal of three manual hours per day, but having the machine will definitely give us peace of mind that Fletcher will still benefit from ABR when we are just too busy to get in the manual hours.

One of the other families we spent some time with this session was Charlie, his mom Katy, and her sister-in-law. Katy did a better job of updating in real time about our session, so go check it out over at Bird's Blog. And I will reiterate a comment I made on her blog here. While traveling for therapy is obviously first and foremost about the therapy, the experience of meeting like-minded parents is a motivating factor in and of itself. As Barbara mentioned in her comment to the same post, the natural environment (or in-home) focus of many early intervention programs, while good in many respects, unfortunately can isolate parents from the natural support groups that pop up in center-based programs. As much as Fletcher is and will benefit from ABR, I feel like as a mom I am equally benefited through meeting great moms in similar situations such as Katy and the others I had met in Montreal.