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.

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.

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).

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

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!

ABR

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?

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.

National Pregnancy and Infant Loss Remembrance Day

Tonight I will light a candle in loving memory of

Owen Riley Slinker and Megan Nicole Russell.