Thursday, December 25, 2008

Christmas Morning

Fletcher gave Trevor and I an awesome Christmas present by sleeping in until nearly 10 am. We went to Candlelight Service at 9 pm, so we didn't get home until late and I was up until 3 am taking care of some last minute details, so I was particularly happy with this gift. Fletcher is still a little too young to get excited by presents, so we spent a leisurely morning having breakfast and then checking out the goodies from Santa. Since Fletcher still plays with toys he got last year, and because we usually give Fletcher what he needs when we find it (remember, with kids with special needs like Fletcher, toys are typically developmental and are considered part of therapy, so if I come across something that he can play with or would like, I don't pack it away to open in December), we have begun a new family tradition and ask that Santa only bring us four gifts a piece: something we want, something we need, something to wear and something to read.

For his want Fletcher got a flat-screen computer monitor to use with our old desktop computer in order to play his favorite online games; his need was a telescoping bracket to mount the monitor on the wall in his playroom so it can be raised or lowered depending on his positioning (in his corner chair vs. stander); he got a new outfit to wear to our family holiday party this weekend; and finally a book of Christmas songs to read that also has buttons to push for the musical accompaniment, to keep mom and dad on tune.

The boys posing by the tree, Fletcher in his Christmas Eve pajamas his Grandma Adams sews every year for each of her grandkids.

Fletcher with a death-grip on daddy's present.

Merry Christmas!

Tuesday, December 23, 2008

Holiday Traditions

Even though his birthday is December 1st, I really consider this Fletcher's second "real" Christmas since he spent his first in the hospital, on a ventilator and drugged with morphine so he wouldn't fight the vent. Last Christmas I was terrified that RSV would land Fletcher right back on the vent, so we more or less hibernated at home.

This year I am feeling a little more confident about Fletcher's respiratory health, so I have decided to begin our Christmas traditions, including a drive through Christmas in the Park, our local Park and Rec's holiday light show, and a trip to see Santa (this year we went with cousins Trey and Michael, so of course we saw Santa at their favorite place-- Bass Pro Shop).

Fletcher Enjoying the Lights

Santa at Christmas in the Park

The Real Santa
(they kept using this horn to try to get the kids to look at the camera, of course this triggered Fletcher's startle reflex)

I convinced them to stop using the horn.

And finally, another action shot from sledding, since the one I posted apparently didn't have enough action for some people. (ha)

And to answer Catherine's question in the comments from the last post: When you sled down your driveway you really can't totally stop yourself from going into the street. We just had to make sure there was no traffic (I played photographer and look out). I would post a video I took of the trip, but I was out of batteries so I had to keep the camcorder plugged in, so all I got was a shot of Trevor's back. But in the video you can hear me telling him that I am against the driveway/street plan all together. But in the end it worked out. They went down the driveway, across the street, over the curb and down the small hill in the park across the street.

Tuesday, December 16, 2008


It snowed a few inches last night, and since Trevor is a born-and-bred south Texan, even after a few years of living in the Midwest the first snow of the season is still somewhat of a novelty to him, particularly because Fletcher is now old enough to possibly enjoy playing in it. So, as soon as the weatherman started forecasting snow, Trevor asked me to stop by Target and pick up a sled.

And, today around noon, they got to test it out...

Excited Anticipation

Action Shot

Second Time Down

Do you think Fletch is giving me a dirty look for letting him loose with his maniac dad or for dressing him in that goofy dog hat?

Heading Back In

Close Up of My Adventurous Frozen Boys

For those who have been to my house, you may have recognized the starting line of the sledding adventure as our driveway. Yes, my driveway (with its roughly 20 degree slope) can double as a sledding hill. Made for a fun time today, but as you can imagine, it's not so great when trying to drive up it and into the garage after a snow or ice storm. Fletcher seemed to like sledding, and doesn't mind the cold weather, at least for short periods.

Unfortunately (or fortunately?), Trevor wasn't able to work up a whole lot of speed, and if you caught a glimpse of Fletcher riding down the two-story inflatable slide at my work party this fall, you know he is a speed demon (actually during his trips down the slide his face revealed a mix of terror and elation, but mostly the latter, at least that is what I assumed since he would squeal with delight when Trevor started climbing the stairs for another trip down the slide).

Monday, December 1, 2008

Happy Second Birthday Fletcher!

I can't believe my baby is two years old. Just like last year, I put together a little photo montage to chronicle Fletcher's second year. His growth obviously isn't as dramatic as it was in last year's video (although I do have to say his hair growth is, I forgot what a little baldy he used to be). I feel the need to include a disclaimer that I have recycled a lot of my favorite photos which I had already posted to this blog. There is, however, quite a few never-before-seen photos and a sweet little musical accompaniment. So, if you have 3.5 minutes to spare, click and enjoy.

Tuesday, November 18, 2008

Good News and Bad News

First, the bad news. When I returned to work after having Fletcher, I returned in a part-time capacity. Fletcher needed to be my priority and I wanted the flexibility of a reduced-hours work schedule to accommodate his needs. I was hesitant to take on additional responsibility because I knew that would interfere with Fletcher's optimum care. I will never regret that decision. However, enter the perfect storm of less-than-ideal market conditions, one of our biggest clients going under, my boss retiring, and a sharp decline in deal volume, and I think you know where this is heading. I have read that the key to job security in economic downturns is making yourself indispensable. Well, in order to maximize flexibility, I had set myself up to be the exact opposite. And, as a result, on Monday I was dispensed. Laid off. Dismissed. Let go.

Yes, I am going to miss this skyline view from my office window.

But I am happily trading it for this one.

While this isn't what I planned for, or what I would have chosen given the option, this does give me the opportunity to be a full-time mom for a little while, which brings me to the good news. If all goes as expected, Fletcher will be a big brother this summer! My wonderful sister Angie (Dorothy in the Halloween post below) is nearly 11 weeks pregnant as our gestational carrier. Fletcher's little sister is due mid-June. My mom has been giving Fletcher one of his cousin's dolls to play with to get him used to the idea (see the camera phone photo below). He does like to cuddle, but usually ends up chewing on its head. Yikes.

Saturday, November 8, 2008

Cutting Back

Times are tough, and I haven't talked about it here much, yet, but if you have ever read any other blogs about kids with special needs, or if you are reading this, chances are you know first hand, that all of the therapies, equipment, medical bills, special diets, etc., etc. are not cheap.

So, like everyone else, we are trying to curtail our discretionary spending. No more fancy kid-themed hair salons for this boy. Being frugal is doing nothing to improve my scissor skills, however, so I enlisted the help of the best jack-of-all-trades that I know... Grandma. Cousin Maren was the willing assistant. She asked if she could cut his hair, and when we refused, she volunteered to be the official comb dipper (in water) but that still was too risky, so she agreed to just distract Fletcher when necessary.

The First Cut with Maren Assisting by Putting on Chapstick
(the girl is a chapstick fiend)

Not Too Worried About Fletcher's Tentative Expression but the Help's is a Little Concerning

Not Too Shabby, Thanks Grandma!

Check out those Molars

While we had to clean up our mess afterward, and there was no cool pink camo smock for me to wear while I held him (in fact, as you may have noticed, his Child-Rite seat did a pretty good job positioning him at first, although to get the back I did have to hold him), overall I think it was worth saving the 25-or-so bucks.

Monday, November 3, 2008

Grandpa Adams

Today was a beautiful day. The weather was perfect, Trevor was home, Fletcher was happy and healthy, we had a nice dinner at my dad's favorite restaurant with my entire family (except my 16-year-old sister who was, get this, sleeping. At 6:30 pm. Oh, 16-year-olds) and all the kids were even relatively well-behaved. It was a great time, except for one thing, the occasion we were marking with this dinner. It is the five-year anniversary of my dad's death. Five years ago today he was driving my then-just-turned-11-year-old sister to choir practice when he suffered an unexpected and fatal heart attack.

I know this blog is supposed to be mostly about Fletcher, and I try to keep it upbeat even in the face of all of our challenges, but I just couldn't let today go by without at least acknowledging my dad and how much he is missed. I show Fletcher pictures of him from time to time, the grandpa he will never know, and I can't help but feel sad. You see, his personality was larger than life, and pictures alone could never do him justice, nor can a few little lines hastily typed on a blog in the middle of the night.

My little brother Kenny found another way to remember him, but he didn't use a blog (oh, 23-year-olds).

Sunday, November 2, 2008

Dog Wrestling

Fletcher has been taking more of an interest in Zoey lately. He will track her visually across the room and will look around on the floor if you ask him where she is (which is a big deal because he doesn't like to look down without coaxing due to either visual or motor difficulties, it is hard to tell which). In fact, when she is around he pretty much has an eye on her at all times, at least if he is also on the floor, because she has a bit of a licking habit. I know, surprise, surprise, she is a dog after all.

For the past year and a half, we have done a decent job of keeping the two separate, as Zoey can get a little over-exuberant with her licking, and being a typical dog who loves to kill and eat squirrels and rabbits and anything she can catch (I mean, that is typical, right? I don't have some blood-thirsty crazed killer living under my roof, do I? I mean, she has only been successful two or three times in the past year), you never know where that tongue has been.

Now that he is almost two, Trevor and I have decided to allow a little more interaction. So Fletcher and Zoey got to play together tonight. Trevor was referee to keep the face-licking to a minimum.

Note that Fletcher is wearing the Babylegs I bought him as part of his munchkin costume. Although I am sure Trevor will protest, I think they are going into the regular wardrobe rotation... they are too cute!

Friday, October 31, 2008

Happy Halloween

Furthering the tradition I began last year (which also happens to dove-tail nicely with the fact that I am not really into dressing up for Halloween), Fletcher dressed up in keeping with my sister's family's Wizard of Oz theme. Ironically we actually WERE in Kansas.

Tin Man Trey, Cowardly Lion Greg, Scarecrow Michael, Munchkin Fletch and Dorothy Angie

Representing the Lollipop Guild

Enjoying an Unseasonably Warm Trick-or-Treat with Spider Alexa and Kitty Cat Maren

Hanging out with Mom

Sampling the Costume Prop

Fletcher did love to chew on the lollipop, too bad I was a spoil-sport and never took off the wrapper! I also didn't bring a bag with us when we made the trick-or-treat rounds, because you know who would end up eating all that candy and I have no willpower. Trevor was flying, so he didn't get to participate, but that is why I am being so good at posting these pictures now, so he can see all the fun. Missed you!

ABR: Fifth and Final Training Day

We practiced and videotaped our final exercise, jaw/larynx, and of course since it was my turn to demonstrate the technique Fletcher decided this was the one time he wouldn't sleep through the taping. Luckily he cooperated and we got some good shots.

The last half of the training session consisted of a wrap-up. Speaking of wrap-up, Marcela does an excellent job of really summarizing what I too feel is the take-away of the week here. The trainers reviewed the key points of the therapy, answered our questions, and discussed administrative matters such as the next training sessions and the satellite logistics (our next three training sessions will be done at their satellite location outside of Dallas). They also talked about the future option of renting an ABR machine that can do some of the exercises as a supplement to the manual technique. It is not available until you have more or less mastered the basics of the technique, and rents for a pretty penny, but it can triple the ABR hours administered, so the potential benefits are substantial.

At the end of the session we had a little time for pictures. We had a great week. It was exciting to learn more about ABR. But equally, the excitement came from meeting some really wonderful people.

Fletcher and Our Trainer Fehim

Moms & Boys

Dads & Boys

Fletcher Taking Nathan's Ormesa Bug Stroller for a Test Ride

Are we glad we did this? Certainly. Will ABR be a cure for Fletcher? No, but as Leonid says, it is an opportunity. I think Fletcher has tons of potential. To the extent it is his structure holding him back from improvements with his motor skills, I am sincerely hoping ABR will help him improve in this area. That way, any gains he makes in motor cognition or skill and any rewiring of the brain from other therapies, or heck, from just living life, will translate easier into functional gains. Only time, and dedication, will tell.

Thursday, October 23, 2008

ABR: Fourth Training Day

No evaluations today, so we got to sleep in and catch up on some laundry and other housekeeping matters. Being a commercial airline pilot, Trevor stays in hotel rooms three nights a week, and as such, has perfected the art of trashing them. Thing is, when he is working, he is not in the same room more than one night in a row and doesn't have to deal with his filth the next day, so despite housekeeping's best efforts, I had a little straightening up to do this morning. I thought you went on vacation to avoid housecleaning (not that this is your typical vacation).

Oh, and before I forget, I wanted to add one last little story about our evaluation with Leonid yesterday. As I explained in my last post, Leonid is not exactly Fletcher's favorite person, for understandable reasons. After the evaluation was over, and we had been debriefed and Fletcher was calm and resting his head on my shoulder, we were saying our goodbyes and Leonid gave Fletcher a gentle pat on the back and said, until next time, I hope you don't hold and grudge. And sure enough, as soon as he heard his voice, Fletcher started fussing. Yes, my son can hold a grudge, just ask his PT... right, Kristy?

Today's training session went very well. The first hour was spent filming the anterior neck technique we learned yesterday. Fletcher cooperated and fell asleep about 20 minutes into the session, so we were able to film him while he was asleep.

The fact that our training sessions fall right in the middle of Fletcher's prime napping time is really a double edge sword, though. The last few days it has been to our benefit, but it just as easily could translate into fussy over-tired Fletcher for the entire three hours. We kind of saw both sides of Fletcher today, as we prematurely woke him from his nap when we were trying to get him into position to work on our third a final exercise focusing on the jaw and larynx. Fletcher has never taken a pacifier, but we have found something that works just as well-- the z-vibe. Usually we have to put it in his mouth and he is a happy, chewing fool. Today at times it worked just as well when he was even just holding it in his hand.

Our Trainer Fehim Demonstrating Our Final Exercise

After session we headed to Old Montreal to catch a light and sound show at Notre-Dame Basilica. It was a brief history of the city and the Basilica and we got to take a brief look around the sanctuary after it was over. It was really quite beautiful. We tried to get some photos, but our camera ran out of batteries and the still-frame shots we took with our camcorder will be stuck in there for months before I figure out how to upload them. I lit a four-hour candle and said a prayer for Fletcher and our ABR endeavor (I am not catholic, and this isn't something I routinely do, but I do remember the last candle I lit was at the Notre Dame de Paris and prayed for my then-three-year old little sister who had just had to have half her pinkie finger amputated). Random little bit of family history there for you.

Wednesday, October 22, 2008

ABR: Third Training Day and Leonid Evaluation

We got Fletcher up a little earlier today and made sure he had a full breakfast, thinking that hunger may have played a role in his crankiness during his evaluation with Gavin yesterday and giving him more to eat would put him in better spirits for his evaluation with Leonid... not so much. I don't know if he is going through an attachment phase, or he just doesn't like being stripped down to his diaper and poked and prodded (who would?) but he threw an even bigger fit with Leonid than he did with Gavin. Complete with quivering jaw and tears.

So, we broke up the evaluation into three segments, letting him cry in order to get the necessary positions and information, and then I would calm him down and we would talk for awhile. He calmed really quickly, but as soon as I handed him back over to Leonid, the tears would start back up. In fact, by the time the second break came around, Fletcher was so tired from screaming that he fell asleep in my arms. Unfortunately, we still had a couple more positions to film (the whole evaluation is filmed so we can review it, and Leonid's commentary, at a later date) so not only did I have to give him over to do something he does not enjoy, but I had to wake him up to hand him over. Not good.

Because he was so upset, he threw himself into extension and tightened up a lot more than he normally does, but I guess it is good for Leonid to see him during his worst times, so he knows exactly what we are dealing with. The evaluation itself was similar to Gavin's and to others I have seen online. He talked about Fletcher's neck (or lack thereof) and basically how this has led to the back of his skull being closer to his back, thus shortening his muscles, thus making them tight, and finally, how this leads to Fletcher's favored position of tilting his head back, which is the most comfortable given the tight muscles back there. Kind of the same basic explanation for all of Fletcher's atypical favored positions.

I guess the bottom line is that, since Fletcher's internal smooth muscles (which are oversimplified terms, but I am no doctor or scientist, so it is the best I can do) are not built up, his skeleton is more or less collapsing in on itself and the bones don't have enough room to move independently, so he moves as one block. It was the most evident when he was laying on his side and Leonid rolled him at the shoulder and his whole body (including pelvis and legs) moved as well. This collapse has led to most parts of his body being in the wrong place (and "wrong place, wrong movement" so the resulting functions of these body parts are affected). His jaw is sightly recessed, adam's apple very high in his throat, clavicle wrapping around his neck, shoulder blades too high, ribs flared out at the abdomen, no butt (thin and narrow pelvis), no rotation at the waist, you get the idea.

Leonid really likes to explain in analogies to get the basic point across before getting into the details (which can be overwhelming to parents, including myself). He used the analogy of the car and driver and explained that therapies that focused on motor cognition (the driver so to speak), while worthwhile, will not get you very far if the car (ie the body's structure) is broken down to the point it won't go (or won't go very efficiently). So ABR focuses on the car, and only once that is in good enough shape, then the driver's skill is relevant. It is a very basic analogy, and oversimplifies things, as so many analogies do, but I think it a decent one, nevertheless.

Another interesting thing we discussed in the eval was the ATNR. He explained how its persistence can be a sign of structural issues rather than neurological issues. I can't remember the details right now, but it completely made sense at the time.

I didn't push Leonid to "rate" Fletcher or anything like that. He saw a few positive things (like his skin wasn't as wiggly as he expected it to be, indicating something positive about the subcutaneous tissue, but I can't really remember what (I'll have to go back to the video and review that part)). But the biggest challenge will be the arching/tightness. He basically warned us that there is a good chance that before Fletcher's muscle tone normalizes he may go from tight to even more floppy (temporarily), but we just have to realize that is actually improvement, even though to us it will seem like more of a nuisance.

Next was our third training session. Fletcher fell asleep after the evaluation and continued his nap for the first hour or so of training, so Trevor decided to capitalize on the opportunity and got in about 45 minutes of the thorax exercise we had been practicing the prior two days.

I am thrilled that Fletcher was able to sleep while Trevor was administering the technique as there is a lot less interference from the baby this way, and if we actually succeed in getting in our goal of three hours per day of therapy, I'd imagine a good portion of it will be done while Fletcher is asleep, if possible.

We also learned our second exercise today, which involved the anterior neck. I am a little nervous about this exercise, because obviously, I don't want to choke Fletcher. Although I know he can't talk and tell me if I am using too much pressure, Fletcher has never had a problem letting anyone know if they are doing something he doesn't like, so I am sure we'll be fine.

Trevor and I were supposed to practice this technique on each other at our hotel tonight, but I just couldn't resist the siren song of IKEA, so we will have to fit a little practice in tomorrow (don't tell Fehim-- which Jennifer so kindly told me was the correct spelling and pronunciation of our trainer's name).

Tuesday, October 21, 2008

ABR: Second Training Day and First Evaluation

Fletcher's first evaluation was this morning at 10am. Everything was just fine as Fletcher sat on my lap and we talked to the evaluator about his preterm birth and everything leading up to the MRI and subsequent diagnosis. The fun and games were over as soon as the evaluation began in earnest, though. First we had to strip Fletch down to his diaper and lay him on a firm work bench while a stranger manipulated him. I think he had flashbacks to the myriad doctors appointments after he came home from the NICU and he was not having any of it. As such, the evaluation was cut a bit short, of course that left lots of time for my questions, so I was in heaven. And, truthfully, Fletcher will have an almost identical evaluation with Leonid tomorrow, and today was more of a warm-up or study session for the real deal.

Now, I am going to plagiarize this next segment from a mommy blog of another woman who is also up here for evaluation, so Katy, since you are a teacher and all, and I am sure you are very keen to such things, I will credit you up front. I think she did a perfect job briefly describing her son's eval, which was very close to Fletcher's, so I am just stealing her description and adding Fletcher's name instead of Charlie's. Yes, I am that lacking in creativity. So... Fletcher is a classic cerebral palsy kid. He's got all the signs: His neck is too short, his rib cage has a diamond shape, his pelvis is very thin, and his legs splay outward from his body like a frog. His arms move from the scapula rather than the ball of the shoulder, and his legs are very weak at the pelvis. So, the bad news is that its a lot to work on and Leonid will only get into it further tomorrow. The good news is that since he's pretty classic, they've got a lot of ways to help him.

Because he was throwing a fit, we didn't get to really dig into a few of the positions that Leonid will place him in tomorrow, so hopefully we will gain a little more insight then. Of course Fletcher's tone increases dramatically when he is upset, so I am sure that is bound to skew the evaluation slightly.

Next up was the second training session. Trevor and I first practiced our technique on our instructor, and next moved on to Fletcher. Fletcher was very cooperative with Fhilin (Trevor suggested this spelling of his name, all I know is it is pronounced Phill-eene). While Fhilin did the ABR technique Fletcher just sat, or laid, there with wide eyes, like he was in a trance or something. On the other hand, when Trevor and I tried it on him he was a bit more feisty, trying to grab our hands and chew on our fingers. But overall it when very well.

Fletcher's First ABR Session

Monday, October 20, 2008

ABR: First Training Day

We had our first training session at the ABR Center today. We got there nearly 45 minutes early (so you know I wasn't in charge) so we hung out for awhile and got to chat with Jessica and Paxson and Melanie, Daniel and Lonnie.

Jennifer, Paxson, Melanie, Daniel, Erin, Fletcher

Our first three-hour session started off with a lesson on how to fold towels. I am not kidding. Apparently it is very important for the technique to fold the towels just so. According to the trainers, towels are used as “air cushions” to ensure that there is no compression of the superficial tissues (skin and superficial muscles) and allow the energy to go through the barrier of skeletal muscles to reach the deepest layers (smooth muscles). Trevor and I had to practice building up the towels just so and practicing on each other, so we could give each other feedback (something obviously Fletcher cannot do) and help each other learn the technique. I must admit, Trevor is much better than I am at this.

Fletcher Wondering Why Mom is Laying Under a Pile of Laundry

I am still not sure how this all is supposed to work, but I can tell you one thing. The trainers claimed that this therapy is very relaxing to the recipient, and I can attest to that. Quite a departure from traditional therapy, that is for sure!

After our session, a few of us from our training class, including Marcela, Owen, and Nathan and Jennifer, Todd and Tyse (who you can "meet" at their carepage (care page name: Tyse)) headed over to the Botanical Gardens. It was a little chilly, but I had a nice time checking out the exhibits and chatting.

Entrance of the Botanical Gardens
Jennifer, Tyse, Erin, Fletcher, Owen, Nathan

Family Picture at the Chinese Garden's Magic of Lanterns Exhibit

Magic of Lanterns Exhibit
Todd, Tyse, Owen, Nathan, Trevor, Fletcher

It was so nice to really be on the same page as other moms. At one point, Marcela said, "Ooh, Fletcher has nice tongue lateralization" which turned into a whole discussion about feeding and augmentative communication. I can not tell you how thrilling that was for me. Those of you with no kids, or "typical" kids, probably think I am crazy, but all you special moms out there totally know what I am talking about.

Fletcher has his first evaluation tomorrow morning and our second training session in the afternoon, where we will start practicing the technique on Fletcher instead of each other. Sometimes the baby can get fussy during eval or training, so we are keeping our fingers crossed that Fletcher takes this in stride like he does most everything else!

Sunday, October 19, 2008


As I mentioned in my prior two posts, Trevor, Fletcher and I are in Montreal this week to learn a new therapy called Advanced Biomechanical Rehabilitation (ABR for short). There is lots of information in the link I provided in my last post, but I thought I would excerpt a portion of the website for those who want just the basics:
ABR in a Nutshell

Everyone believes that CP children have poor functions because their brain is too damaged to control normal movements. Respectively CP children are considered incurable because the brain damage is irreversible.

ABR has a different philosophy. We believe that even the badly injured brain has enough electrical plasticity to control normal motor functions, however for this plasticity to “switch on”, a child’s musculoskeletal structure has to be improved to a sufficient level - plasticity threshold. Existing treatment methods fail to achieve recovery of motor functions. This failure is then being blamed on the brain damage.

We believe that the answer is different. Existing treatment methods fail not because of insufficient “reserves” of the damaged brain but because they fail to provide sufficient structural improvements to the musculoskeletal system. As a result, the injured brain has “too little of a good musculoskeletal structure to work with” and cannot show its remaining plasticity (reserves) for control of motor functions.

Musculoskeletal structure reconstruction must come first!

ABR approach makes restoring the mechanical structure of the musculoskeletal system its first and primary goal:

  • full range of movements (ex. head being able to move unrestrictedly in all directions)
  • proper alignment (ex. legs and pelvis; arms and shoulders, etc.)
  • muscular mechanical response (proper muscular balance)
In turn, “quality of mechanical performance” requires “bio-mechanical capacity” of the musculoskeletal system which implies:
  • Proper volume, tone and strength of the skeletal muscles
  • Proper volume, mobility and alignment of the joints
  • Equilibrium of strength and length between reciprocal muscular groups (ex: biceps, triceps)
  • Adequate proportions between size and strength of centre (head, neck, trunk) and periphery (arms and legs)
  • Cascade of muscular interactions (centre to periphery)

ABR re-establishes, unit by unit, proper skeletal and muscular structure to permit proper, unrestricted performance of movement.

Today all the families beginning their ABR training met for a presentation about the theory behind ABR and the basic premises (as outlined above and discussed further on the ABR Canada Website). Tomorrow, we will break into smaller groups and begin our week-long training on the technique. On Tuesday and Wednesday Fletcher will be evaluated by Gavin, an evaluator based in the Montreal office, and Leonid Blyum, the founder of ABR.

As exciting as learning a new technique that will help Fletcher gain strength and ultimately improve function, almost equally exciting is that I am getting the opportunity to meet some of the women I "know" from the computer. I know so much about these families through their blogs, and it was actually really surreal to meet them in person. I just keep staring at these kids, about whose stories I have spent hours reading, looking at their cute pictures, and here they were, sitting in the next row. It was almost like seeing a celebrity in real life! I met Melanie and Daniel briefly in the hallway, sat next to Jessica and Paxson, had a quick chat in the parking lot with Katy, and had lunch with Marcela, Owen, and Nathan.

The Boys (Owen, Nathan, Fletcher and Trevor) After Lunch

It was wonderful seeing people like me, and kids like Fletcher. I couldn't believe how similar Nathan and Fletcher are. Nathan was laughing and "talking" and it was so weird, if I had closed my eyes I would have sworn it was Fletcher (and every mom can pick their child's voice out of a crowd... it was seriously that identical).

Of course, I can't travel to a new city, and different country for that matter, and make it soley about the therapy. So, we headed down to Vieux-Montreal (Old Montreal) this evening and took a guided carriage tour around the historic district. Yes, we are unabashed tourists, although we only took two pictures (so not too bad): the one below and an identical one after the ride, only Fletcher is sound asleep. Either the history lesson bored him or the horse's gait lulled him into dreamland. Either way, do you think it impractical to schedule carriage rides every day for his afternoon nap?

Saturday, October 18, 2008

When Your Toddler Doesn't Toddle

Fletcher has been diagnosed with Cerebral Palsy due to a brain injury he sustained as a result of his extreme prematurity. I still plan to back up and fill in some journal entries from his time in the NICU, and I will go into more detail in those posts.

Before Fletcher's diagnosis, pretty much my only exposure to a person with CP was Blair's cousin on the sitcom Facts of Life. In other words, nearly none. It has been a steep learning curve, and I still have much to learn, but learning about cerebral palsy and how it affects Fletcher has been my focus for the majority of the last year. Cerebral Palsy is hard to classify because it manifests differently in every person. The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. I found that definition, along with a good basic explanation here.

For the last, 21 months, beginning mere weeks after Fletcher came home from the NICU, he has been doing what many consider "traditional" therapy to combat the effects of his cerebral palsy. He began with occupational therapy (OT) twice a month. After a few months OT was increased to weekly and physical therapy (PT) was added. Over time new therapies have been added and the frequency of others increased. Currently Fletcher has PT two times a week, OT once a week, vision therapy/early childhood special education once a week, aquatic therapy once a week, speech therapy once a month (increasing soon to two times a month) and sees a nutritionist once a month. Luckily for us all of these programs are paid for by our local early intervention program, Infant Toddler Services of Johnson County (see the link in the right hand sidebar for more info), and all but the aquatic therapy is provide in our own home.

We have seen Fletcher make steady progress with these therapies, but, for Fletcher, I feel like we need to be doing so much more. And there are plenty of alternative therapies out there. Problem is finding one that is right for your child, as each kid can respond differently to a particular therapy. Another CP momma, or should I say supermomma, seriously, this woman is an incredible mom and advocate for her son (and believe me, advocate is one of the biggest roles you play as a parent to a child with special needs), put together this therapy approach that illustrates all of the options her son has tried and others that she is researching. It is not an easy choice as it would be impossible to do them all because these alternative therapies are not covered by insurance, are not cheap, and often are quite time consuming with no guaranteed results. You can research all you want, but at some point you have to take a leap of faith.

I have taken my first leap and tomorrow begin a week-long program learning the basics of ABR.

Mission Statement

Up until now, I have been using this blog as little more than a photo album. As I have mentioned in the past, I have grander plans for it. In our effort to build our family, Trevor and I have been through many less-than-typical experiences. We struggled with our special brand of crazy genetic-based infertility and the ensuing IVF cycles, then I developed preeclampsia/HELLP syndrome and had to be hospitalized, next were Fletcher’s extremely premature birth and three month NICU stay, and finally, our daily life dealing with Fletcher’s special needs. All of these situations are not the norm, and each can be very isolating, let alone all of those challenges in the aggregate. These are not the topics of play date banter or water-cooler discussions at the office.

So, for support and information, I frequently turn to the Internet. It has truly changed my life. Instead of feeling like I am the only person dealing with these situations, I have found communities of people (well, mostly women) who have walked the walk, so to speak. I have learned so much from these women who take the time to chronicle their special children’s successes and set-backs, as well as their own, as special moms. In fact, as I type this, Trevor, Fletcher and I are on a plane bound for Montreal, Canada to pursue a new therapy I discovered through a fellow mom blogger.

I feel like it is finally time to start giving back. I am going to try to start posting a little more in-depth about Fletcher’s challenges and the way we are addressing them. This is not an easy thing to do in such a public forum, even for a fairly open person like myself. I have no way to control who accesses and reads this blog without “going private” and restricting access to only those I invite into the readership. But going private is not an option if I want this blog to be a resource, or at least small source of comfort, to people like me who hope to learn from other people’s experiences and feel not so isolated and alone. So, I am willing to step a little outside my comfort zone and really try to open up about the realities of our daily life.

Wednesday, October 15, 2008

National Pregnancy and Infant Loss Remembrance Day

Tonight I will light a candle in loving memory of
Owen Riley Slinker and Megan Nicole Russell.

Saturday, September 13, 2008

The Lake

Over Labor Day weekend Fletcher and I joined my family at our grandparents' cabin at the Lake. It is a very small three bedroom cabin, but growing up we used to pack it full of up to 10 adults and 10 kids, the latter sleeping side by side like sardines on the floor. This time it was just my immediate family, so Fletcher and I got a bed all to ourselves.

Being an overprotective mom to a baby with poor head control and an oral fixation, I was a little hesitant to bring Fletcher swimming in the lake, should he inadvertently, or rather intentionally, if he got his way, gulp a few mouthfuls of the water (fresh spring water it ain't). On Friday I even brought a blow up pool and hiked up and down the hill from the lake to the cabin to fill it with tap water. However, I am trying to give him as many typical kid experiences as possible, so on Saturday I relented.

Here he is in a boat borrowed from one of his aunts (thanks Niki!). It didn't offer great trunk support, but the baby float I usually use has a much lower profile and he can get his mouth way too close to the water.

Drying off with Grandma.

I like to call this one "Everyone Loves Angie."

Because I am just that mean, the highlight of the weekend had to be when my mom fell, fully clothed, into the lake when trying to board the paddle boat. Being a good sport she just swam over to the the ladder on the dock, climbed back up and tried again. Luckily Fletcher and I boarded safely on the first try and he loved it. Hopefully next time we make it down to the Lake Daddy won't have to work and he will be able to join us.

Sunday, August 24, 2008

Reaffirmation of Faith

Not too long ago Trevor, Fletcher and I became members of a new church (well, new to us). I was brought up in a different denomination, but had gotten out of the habit of attending services. Many things have come out of Fletcher's preterm birth, and one of them has been my new appreciation in, and reliance on, my faith in God. This particular church, while much larger than what I was used to, is a good fit for our family, in part because I really enjoy the senior pastor's thought-provoking sermons (he even has his own blog), but mainly because this church has a program called Mathew's Ministry, which serves people with special needs. Although I have yet to sign Fletcher up, I can't tell you how excited I am about this program.

We arranged a Reaffirmation of Faith ceremony for Fletcher during the 10:45 service last Sunday. Procedurally it was the same as a Baptism, however we had already had Fletcher baptized in the NICU when he was four days old. This was not a good memory for me. I was still very sick, my eyesight continued to be compromised from my preeclampsia/HELLP syndrome, I had not even been allowed touched Fletcher yet, he was so tiny and fragile although he was in his "honeymoon period" so temporarily on c-pap and doing well for the moment, but still under the billi lights (which they turned off for the ceremony) and we had only named him moments before (and in truth, because he needed one to be baptized, the baptism was the sole reason we finally settled on a name). The pastor had to wear gloves and with one hand reached into the isolette and using a syringe dropped a few beads of sterile water on his tiny head and dabbed it with surgical gauze. Don't get me wrong. I am so grateful that the pastor held this ceremony and that the NICU accomodated my request. At the time, although my head was so fuzzy I don't remember a word, it had a very calming effect.

More than anything, I arranged the Reaffirmation ceremony because I wanted to replace the memories of that scary, emergency baptism with celebratory memories. I wasn't disappointed. The ceremony was touching, as the pastor explained to the thousand people or so in the congregation (I told you it was a large church) about Fletcher's early birth and his fighting spirit and the grace of God that brought him home to us. He touched on his disabilities and asked for the congregation's support and praised God for Fletcher's life and blessed him. Afterward we had a brunch at our house for some of our family and friends (including Fletcher's therapists, who are practically like family now!).

I was really too busy hosting to get any great pictures during the brunch and no flash photos were allowed in the sanctuary, but I thought I would share a few.

Baptized December 4, 2006

Reaffirmed August 17, 2008

Family Photo from the Brunch

At the risk of making this last paragraph sound like an acceptance speech, I can't forget to thank Trevor's brother Todd, who flew in from Orlando, for helping to get our home party-ready. I had a big to-do list and Trevor was tied up cooking in the kitchen most of the weekend. Also, thanks to my sister, Angie, for being an awesome sponsor and also helping with the food, my mom for making the pastries, doing yard work, and watching Fletcher while I cleaned house, my brother Jay for helping Trevor in the kitchen, my brother Kenny for helping with some yard work, and my friend Kim for letting Fletcher borrow her son Gabriel's adorable christening outfit!
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