Thursday, December 25, 2008
Tuesday, December 23, 2008
Tuesday, December 16, 2008
And, today around noon, they got to test it out...
Second Time Down
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
Tuesday, November 18, 2008
Saturday, November 8, 2008
Not Too Worried About Fletcher's Tentative Expression but the Help's is a Little Concerning
Monday, November 3, 2008
Sunday, November 2, 2008
Friday, October 31, 2008
Tin Man Trey, Cowardly Lion Greg, Scarecrow Michael, Munchkin Fletch and Dorothy Angie
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!
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.
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
Wednesday, October 22, 2008
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
Fletcher's First ABR Session
Monday, October 20, 2008
Sunday, October 19, 2008
ABR in a NutshellEveryone 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.
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
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
Saturday, September 13, 2008
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.