Neuroplasticity and the human brain in action

Posts tagged ‘Sensory Meltdowns’

Seen and Unseen Progress, Big B

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Big B and Sparkle Swimming

Big B has been making good strides in his development, and this makes his mama very happy. I was beginning to wonder if the meltdowns would ever cease. Finally in week 8, I saw a significant decrease in the drama, which I’m sure was a relief to all of us, especially Big B. Among other things, I have seen him playing more nicely with his younger brother. Where B is normally inclined toward very rough play, I have noticed that he has started to be more gentle. It doesn’t always last very long, but one day I saw him playing imaginatively with Baby Blues for an hour at least, perhaps more. They were pretending to be animals, dogs and big cats, I believe. Rather than pushing his brother around and provoking him to fight, Big B played gently, which is rare for him.

Another random thing he did was to take a big pad of paper and a pen. He sat quiet and still on his bed (another unprecedented behavior for B!) and wrote down all of the letters he knew in the alphabet. Usually writing practice with him is like pulling teeth. But not only did he start writing random letters. At one point he brought me a white folded card he’d retrieved from our stationary box, and written his name on it with a picture of a person on the front. He told me it was a letter for Grandma, and wanted me to put a stamp on it. He did all of this after watching his older sister write a letter then address and stamp it.

In swimming, he also has made a lot of progress. He and Baby Blues were in the same beginner’s swim class. While the latter was obviously uncomfortable in the water, B just took to it like a fish, and fearlessly tried anything the teacher asked of him. One day he was barely learning to dunk his head under, and in a short time he’d learned how to float. Not long after he started swimming around with a pretty decent free stroke that helped him navigate in the 3-foot section of the pool.

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Baby Blues sitting on the stairs, sometimes until someone compels (or bribes) him to take his turn practicing the swim skills.

Moving on to Big B’s Progress Report, I was happy to discover that like Dash, he too had made improvements in all of the developmental tasks he has been working on. It is exciting to see the home improvements! Even more exciting is the discovery of his new skill levels, of which I’ve hitherto been unaware. His coaches have said: “B has improved so much in the Sensory Motor Room! He comes right in and gets right to work! We are very excited about the improvement in his VOR reflexes! He has been working hard in the Cognitive Room! His listening comprehension is great! We are proud of him!”

Among his greatest needs when he started the Brain Balance program in August were Big B’s eyes and eye reflexes. He was still an infant in his vestibulo-ocular reflex, which naturally went to the top of our list of things to work hard on. In the first month, no matter how much we worked on it, we could not get him to execute the eye exercises with great efficacy. He tried his best, and submitted to the process, but no improvement was visible. So when we learned that his VOR had jumped from level 0 out of 15 all the way up to level 5, we were shouting for joy! He’s definitely benefitting from the exercises, and we need to help him to keep working hard. In Optokinetics, he went from a 5 out of 15 to a 6 out of 15. At first he could barely tolerate wearing the visual stimulation glasses. But he’s gotten to where he now can tune out the flashing light, and complete his tasks. His skill level there increased from a 1 out of 7 in August, now up to a level 6! Great progress.

In auditory stimulation (wearing headphones, filtering out only what he is hearing in his left ear) he jumped from  level 1 out of 3 up to a 3! In his auditory processing, he actually exceeded his goal, which was to reach his age level. He went from a 3-year-old level in August now up to the level of an 8-year-old! More great news, and encouragement for his mama.

In touch, he has also improved in all categories. In tactile stimulation (wearing vibrating cuffs around his left arm and left leg, which he has to ignore while doing other tasks), he went from a level 1 out of 8 in August all the way up to a level 7! In fine motor development, he went from a 2-year-old level to that of a 3-year-old. In spinning, he went from a level 3 out of 8 in August, now up to a 6. In proprioception, he went from the level of a 3-year-old to that of a 4-year-old. So still plenty of room for improvement, but he is getting there! Happy Dance!

In synchronization, he has also improved in all three categories. In balance beam work, he progressed from a 3-year-old level to that of a 4-year-old. In gait and aerobics, he has gone from age 2 to age 5 since he started! Working with the interactive metronome, he progressed from age 4 to age 5. In core strength, Big B has improved. In two categories he is up to his age level. In supine/back: he’s gone from age 3 to age 6, so goal accomplished. In prone/stomach he has gone from age 3 to age 4. In lateral/side he has gone from age 3 to age 6, so up to his goal now. In  brachiation/upper-body grip, he has gone from age 3 to age 4.

One of the fun and happy side benefits from enrolling us in Brain Balance is how the nutrition program continues to help us feel better physically, emotionally and spiritually. It feels so good to be healthier, and just brings great peace of mind. My husband has had perpetual acid reflux problems, complicated by an esophageal hernia in the last few years. Ever since we started with the diet change, he’s not had one symptom of either condition, at all! He has lost at least twenty pounds, probably more. I have lost 12 pounds so far, and each of our kids have lost weight as well. In Baby Blues’ and Dash’s cases, that’s not a good thing, so we are trying to pack as many oils into their food, especially Baby’s right now. But for the rest of us, getting trimmer has felt really good. Living the benefits from eating clean is enough to convince us that the lifestyle changes are worth it. Soon we will take a new family picture, and I will put it side-by-side with the last one we took, to see how we have changed. Here are two pictures we took on Memorial Day this year.

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Left to Right: Big B, Daddy Michael, Freckles, Sparkle, Mama Rebecca, Baby Blues, Dash

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I love my Sweetie

Little Blessings and Progress, Days 26-32

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 Zenos Frudakis, “Freedom” in Philadelphia, PA
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This Frudakis sculpture has always been fascinating to me. I hadn’t thought of it in terms of our current situation until just now. I think that my boys, Dash and Big B, might understand a little bit about what it feels like to be the subject of this sculpture. Confined to a body that doesn’t allow the true self to be expressed. More so for Big B than for Dash, I imagine. But both of them can understand how he feels.

Wordsworth says that “Our birth is but a sleep and a forgetting: The Soul that rises with us, our life’s Star, Hath had elsewhere its setting, And cometh from afar: Not in entire forgetfulness, And not in utter nakedness, But trailing clouds of glory do we come From God, who is our home: Heaven lies about us in our infancy!”

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Thomas Cole, Voyages of Life Series

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I suppose that none of us enjoys a perfect expression of our spiritual selves, while traversing our mortal journey. We have forgotten our first home with God, but it must have been a glorious place. I believe that when we are born, we are already perfectly whole spiritual beings, with individual characteristics and personalities already quite defined. We bring much of who we are with us, and that serves to guide us while we are here. But some of us are given physical bodies that limit that expression of our true selves, to varying degrees. As moms, we often feel like it is our duty to seize every opportunity to mold and influence our children for good. This is an honorable impulse. We might even say it is a God-given impulse. We have a clear idea of what our children should be learning and doing at each phase of their lives. A vision, if you will, of what is right and desirable for that child’s development. We trust our intuition, and for the most part it guides us in the right direction. By the way, for a great book on intuition, see this one (cover picture below).

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But there is a desire that has permeated my mind for quite some time now, with regards to my kids. Yes I really do want them to be successful and happy. And I have a pretty good idea of what I think that would look like for them. Often it doesn’t match up with what I see from day-to-day. But ever since I sat in a Mom’s Retreat a year ago, and listened to a veteran homeschooling mom, I have paused to consider my ideas. This woman taught us one of the principles that she learned to follow as a mother, and which she clung to in all situations. It became her founding principle of parenting. Here it is. She decided that God knew her kids a whole lot better than she did (and she knew them pretty well).

At one point in their lives, when it seemed like all her kids did was fight all day long, and things just started to get crazy, she decided to pray over it. And she got a specific and unusual answer about how to manage that situation. It was simple too, but she hadn’t come up with it on her own. Any time one of her kids came crying to her about some fight, she asked all involved parties to act out for her what had happened. And then as they acted it out, she stopped and observed for each child in the sequence of events, that he/she could have made the decision to stop fighting. And so they did this exercise over and over, and it helped them stop the fighting. She decided from then on that when she was unsure about a course of action in her parenting, even before consulting a parenting book, or another Mommy friend, she would kneel down and ask God specifically about what to do. Day in and day out, she asked for specific help with decision-making, and she tried to follow whatever that course would be, without questioning it. By choosing to act on those impressions, she continued to receive more guidance, And eventually God had taught her to nurture her kids to become who they were supposed to be. The person that they always were, before they came to her family.

So what does any of this have to do with Brain Balance? Well, I’m starting to see my boys more clearly. I’m starting to get better acquainted with who they are, which we hadn’t been able to see in former times.  I’m figuring out that God does know my kids better than I do, and He will inform our parenting and decision-making, if we will let Him. So I sat down with our BB program director this last Thursday, to discuss Dash and Big B’s one-month progress reports. It was so fun to hear about their triumphs and trials in conquering the physical tasks that they were being asked to perform.

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Dash holding Big B at Ft. Worth Zoo, 2007

Big B has made significant improvements with exercises at home. He melts down a lot less, and works hard at completing all of the exercises every day. I wasn’t sure what to expect from his progress report, but I was pretty sure he’d improved a lot, based on what I saw. I wasn’t surprised to hear that his stamina for completing exercises at first was low (just getting him to hold still has been a major trial for his mother in the first six years of his life!). He has shown himself to be resilient though, and very soon he was tolerating all of the tasks and stimuli being given to him. The very first week we brought him, for example, he didn’t even stop to play in the cute playhouse that is in their lobby. He just ran from one end of the room to the other in circles, while he waited for his turn to come.

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Now a month later, he doesn’t run around the room anymore, but focuses on something to play with. His gains are modest when compared to Dash’s. However, we may appreciate them more enthusiastically. The length he’s had to span to achieve those gains, seem incredible to me. Now for a few specifics on Big B’s progress: He still has much work to do on strengthening his eyes. On all exercises but one, he’s improved. His core muscle strength has improved. He used to have the equivalent of a 3-year-old’s core strength, but now he has that of a 4-and 5-year old, depending on the muscle group. His biggest strides were made in auditory processing. He went from having the audio processing of a 3-year-old to that of a 6-year-old, putting him at his age level. From his coaches: “[Big B] is so much fun to work with!He always works hard in every session. His focus has improved a lot!” From the cognitive coach: “[Big B] always completes every assignment. His listening comprehension is fantastic!”

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As I sat in the office with the director, I had the advantage of seeing through an observation window that connected to the sensory motor room. I had a good view of Dash’s current session tasks. Just a little visual here: He was walking on a balance beam, with headphones over his ears (transmitting audio input of some kind that he had to filter out, in order to complete his tasks), special glasses on his eyes, the left lens of which transmitted a red flash intermittently (more stimuli for him to filter out), vibrator cuffs on his left ankle and for the first time on his left wrist (both of which vibrated continuously), a sock on his right foot and a bare left foot, and he’s walking along the balance beam, being asked for the first time to toss a small yellow ball up and down while he moves along the beam, first proceeding forward, and then going backward. I was impressed at how well he handled all of that. And he does this type of stuff for half an hour, three times a week.

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So just a couple of things I remember from Dash’s progress meeting. He is doing really well! In many tasks, where he began at the level of a child much younger than he, great improvements had been made. He’s advanced in varying tasks at a performance level of 1-to-4 years beyond what he was doing a month ago. For example, in one of the visual (eye muscle development tasks, he began at the level of a 10-year-old, and has advanced to his age level, that of a 13-year-old. While his auditory processing is not significantly better than it was a month ago (that of a 10-year-old), his fine motor dexterity has moved from that of a 7-year-old to that of a 9-year-old. In his balance beam skills, he’s advanced from an 8-year-old skill level to that of an 11-year-old. In virtually all areas he’s improved by at least a year or two. From his coaches: “[Dash] is an all-star in the Sensory Motor Room! He is improving in every function. He is talking less and less about ships (one of his favorite subjects, he will teach you all about it if you have an hour). From the cognitive coach: “[Dash] is very creative. His essays are always fantastic. He works hard and fast, and usually completes extra assignments.”

So all in all, it has been a great week. Update on our diet: Still going strong!! Get a load of all the peaches I harvested this week! We have given a bunch away, but we are still working to creatively put away about a third of what you see here. I am steady at six pounds lost. Michael has me beat at ten pounds so far (probably more, but he never weighed himself to get a base line, so we are guessing..). All of our kids have seen their waistlines decrease. This is not good news in the case of Baby Blues, who is already too skinny! So we are working to get more calories into him.

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I had a neat experience this week that I forgot to mention. It deserves its own post, but I will just tack it on to the end of this one. On Day 27, I got away to watch a marvelous play with my mom and two of my sisters at the Hale Center Theater. Mom had purchased these tickets months ago, and the day had arrived. I had never seen this play before, so I didn’t know what to expect. It surpassed my expectations. It was roaringly funny, a story about Ethel P.Savage, a wealthy old woman whose greedy children won guardianship over her, and then committed her to a mental institution. Their reason to convince the powers that be of her unfitness of mind? This crazy idea she had, to put all of their late father’s money into a memorial fund, created for the purpose of helping others make their dreams come true. And besides the fact, at a ripe old age, she had taken up acting on a whim, and persisted in the idea that she would be great at it. However, the supervising doctor is far from convinced that she was unfit to manage her own affairs, and spends the duration of the play investigating the question.

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By the way, we sat on the front row of this little theater. I sat on the very end, an arm’s length away from the actors in different scenes. These hilarious people kept us laughing the entire time! It was a small cast. Most of the characters were mental patients, who became her companions at the institution. Hannibal is a former statistician, who was replaced by an electric calculator, and owns a violin, which he wrongly believes he can play beautifully. Florence Williams, crippled by the loss of her young child to death, carries around a large doll, and mothers it like her son.  Jeffrey was a veteran pilot from the war, at once shot down, and bereft of all his crew members. He believes he has a great scar on one side of his face, which he keeps always hidden from others. Fairy May is a compulsive liar who is obsessed with having others love her. She is unkempt throughout the play, but believes herself to be stunningly beautiful. More on the play here.

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Hannibal, Ethel P. Savage, Fairy May

Now here is where the play surprised me, and I found myself unprepared for the overflowing emotions that came over me. Endearing people with all of their eccentricities, I grew to love them as they were. So I wasn’t prepared for the last scene, when Ethel is parting from her newly beloved friends. She loved them so much, she actually considered staying in the institution, because she was happy and needed there. But Doctor Emmett’s wise counsel convinces her that her place was not in an institution such as this:

“Jeffrey sees only what he wants to see—an excuse for not facing the future. Does Florence see that her child was taken from her? Does Fairy see what the mirror should tell her? No. They’ve found refuge in an egg-shell world where you don’t belong. For you see yourself clearly, I’m sure. You belong in the world you can best serve. The impulse to live your life with courage was right. Go ahead with your Memorial. And don’t be betrayed by the illusion of contentment. The door is open for you. Make your peace with loneliness.”

But here is the clincher, which found me during the finale, in the spotlight on the front row, then leaving in tears. As Ethel looks back on her friends one last time before parting, the scene changes. Where Hannibal stood playing his violin with a wildly unstrung bow, now he stands, with a perfect instrument, and he plays it sublimely. Where Fairy May stood, with wild hair and agitating behavior, now stands a wholly beautiful and self-assured young woman. Where Jeffrey sat forlorn at the piano, covering the right side of his face, now he exhibited a straight back as he played a beautiful concert piece (accompanied by Hannibal naturally). Where Florence sat previously perched on a couch, fussing over her doll child, now sat in front of her a perfectly healthy, beautiful young boy, who smiled up at her.

This final character transformation naturally affected me most. In fact I’m sitting here bawling, just recalling the instant the lights illuminated that scene. Here was a concept I understood. Each of us possesses inside of us a perfect, immortal spirit. God made us that way. When we finally return to him, hopefully our time on earth will have blessed and nurtured that spirit, even effected by great trials, instead of breaking us. But as Stephanie Nielson has eloquently expressed, we are not our bodies. Each of us is a soul and body combined. The vision of who my sons really are keeps me going when we struggle to make it through the day-to-day struggles, doing yet another set of exercises. We are making important changes. Our journey towards helping them to step into their authentic selves did not begin and will not end with this Brain Balance experience. But it’s such a blessing to see their progress accelerated. Here is one more link that expresses my feelings about each of my beautiful children.

Incidentally, Dr. Leslie Philipp Weser writes this in the forward to Robert Melillo’s book:  “Reconnected Kids,” something that fits right along with the song above posted:

“In Reconnected Kids, Melillo likens the child’s brain with functional disconnect to a symphony orchestra where the conductor (brain) allows the two sides (left and right hemispheres) to become out of sync with each other. To fix the problem all the instruments need to be broughts back to the correct rhythm, harmony, and key. Simply correcting the violins isn’t enough; the rest of the orchestra needs adjustment as well. Similarly most neurological systems in disharmony require more than one solution to correct imbalances. To address only an auditory or visual processing problem, a nutritional problem, a reading problem, or a dysfunctional family problem alone is not enough. Melillo’s emphasis on correcting the entire orchestra is right on target.”

Happy Labor Day to all!

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Brain Balance Days 1-4

 Yep, this picture pretty much sums it up around here.

At this writing, we are on Day 5.

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This was our last fast food trip, pre-Brain Balance. I chose one of my favorite places, The Purple Turtle.  None of this food would make it on to our approved menu list now. Dash was mad at me for choosing this place, so he made sure he let me know how miserable I was making his life! I thought to myself at this moment, “Babe, you have no idea. Come back in another week or two (after we get going on the Brain Balance diet), and you will be pleading for corn dogs and tater tots. In the days leading up to Day 1 of Brain Balance exercises and diet changes, we went through our kitchen and purged. I’ve learned the therapeutic value of a household purge. Every time I do it, I feel like the world is new, and the brain clutter has vanished. I highly recommend it to anyone, and every six months is best!! That said, this is the first time that I’ve managed a complete food purge on a broad scale. Excepting a few long term food storage items like whole wheat, sugar, and powdered milk, anything that we couldn’t eat on this new regime was put in one of two places: In a box for Leilani and Jake (10 kids in their blended family), or in the trash. The guidelines are: no gluten, no dairy, no soy, no MSG/Additives/Preservatives/Artificial dyes/flavorings, no refined sugars or flours, no white rice or white potatoes, and only 5 raw sugars (pure maple, honey, agave, stevia and coconut sugar) in small amounts. Organic produce is encouraged as far as possible, and organic products that meet the above specs. Boa Sorte to us!

Day 1

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My husband and I are lucky to have a great realtionship. It is rare that we lose our tempers with each other. When this happens, it is usually about one thing: Money. If you know us well, you know that we have very different paradigms about how to approach money. We each have good and bad elements that we bring to the financial table. We learned early on that this fact was likely never to change. So we make do, and set the parameters together, because that is all we can do. It was a HUGE, GIGANTIC deal to get us to a place where we were both willing to put out the big bucks to enroll in this type of program. But some resources are worth it. Those like the Brain Balance Center, which are changing families and lives every day, in significant ways, is one of them.

We are almost 5 days in to the process of making over our family diet, and undertaking some pretty involved physical exercises to help us rewire our brains. It’s not as intense as I imagine a military boot camp might be, but it is tough. We went through the excercises for the third time, and found that Big B has a hard time even getting into the formation to do some of the exercises. So we are starting slow, not expecting a lot. On Day 1 of the new diet, Michael and I had more fights than perhaps we’ve had in the last 6 months put together! I have no idea what came over our household, but apparently stuff happens when you start messing with lifelong eating habits :).

In our (almost) 15 years together, we have learned about and implemented a number of health strategies, with varying degrees of success. In spurts of collective energy, we’ve learned how to de-tox from sugar as a family, and incorporated green juices and green smoothies into our diet. We’ve gone to counseling when trauma has arisen. or when my depression has become too much. We’ve intermittently jumped off the conveyor belt of public schooling, and replaced it with a homeschool routine. We recently upped our aerobic levels together as a family, by way of running together. All of these interventions have been helpful and necessary. But the emerging pattern is that we haven’t been able to sustain excellent diet and lifestyle habits over enduring lengths of time, and this keeps us stuck on the proverbial treadmill. Throw one or more special needs kids into this mix which, and it can get pretty insane.  This is one of the big reasons we needed to pay the big bucks. Once you give that kind of money to someone, to change your family’s life, you can’t afford to blow it off. You can’t give up when it starts to get rough.

We took Dash and Big B to their first Brain Balance sessions at the center. B ran a path from one wall of the lobby to the next. They have the cutest built-in miniature house, right there in the lobby, complete with a couch for mom and a shelf of toys to make the wait pleasant. He’d occasionally pause there. but mostly chose to run around. Both boys came out happy, and excited to return in two days. After dropping them off I dashed madly to the Harmons nearby to load up on whole foods that we could eat. This was a hungry day. And I had a big headache.

Day 2

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On the morning of the second day, I woke up on the verge of a panic attack. I had been having bad dreams all night. Incidentally Robert Downing Jr. was in my dreams. He had his Iron Man persona going on, but in a bad way. Iron Man in a leather jacket was a homicidal gang leader in my neighborhood, who went on the attack, anytime someone questioned his authority or stood up to him. Throughout this extended dream sequence, I spent most of my time either fighting him or hiding myself and my family from him, after having inexplicably called him out on his bullying. Any dream interpreters want to take a shot at it? Analyze that and get back to me, will you? What I get from this is that I have been in fight or flight mode for a little while now, trying to gather the resources to fight the incredible forces of habit.

Usually when things get too demanding or chaotic, I stop and take a break to breathe, and address the tasks at hand only when I’ve achieved a semi-peaceful emotional space (you could also read this as procrastination, but it is a coping mechanism). When it’s not possible to work up to big tasks, I do dive in, but often with a bad attitude. I’ve purposely designed my life to be simple and flexible enough to allow me time and space to approach things without haste.

So on this morning, instead of getting out of bed immediately to do exercses like we’d been, I curled up in a ball and asked Michael to hold me. In that moment, I prayed to God to help me do it. I didn’t want to blow the routine off, but the tasks in front of me loomed like Everest. By the way, that’s a tag line for Michael’s company. “What’s Your Everest?” they ask. The idea is that any company which has tough marketing and financial issues to resolve, should come to them to do the tough analysis, and will come away with real solutions. Not even a week before Day 2, I sat in church in San Jose, with the women in my old neighborhood. I’d been asked to read a quote about how God will remove mountains for us when we exercise our faith. I cried as I read it (Mormon women emote a lot on Sundays when they all gather). I felt that God had recently given me the tools to remove what has felt like a mountain of concern and frustration over Big B’s developmental delays. And now here I was, on Day 2, the reality of the task bearing down. I asked Michael to give me a priesthood blessing, which he gladly did. (laid his hands on my head, and invoked a blessing of extra strength and courage from God on my behalf). I felt better. With Michael’s help, I’d given myself the emotional space to put off diving in unprepared, and we got the first iteration of exercises done for the day. Sometimes inertia can be crippling. Thankfully it can be overcome.

Day 3

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Today we dropped the kids off for their second sessions at the Brain Balance center, and went immediately to the nearby farmer’s market. They were in the last half hour of their sale time, so we got half price on a lot of fresh, organic produce. A cup of organic raspberries at the market was $3.00. At the local store to compare prices afterward, we found remarkably that it was $2-3.00 more to buy a similar amount of conventionally grown raspberries. With Daddy home on this Saturday, Day 3 was much brighter than Day 2. He helped me do all three home exercise sessions, and the kids listened to him really well. I’m not sure why this happens, but they often listen better for him than they do for me. Today we had a small breakthrough for Big B. He was working on the “lizard” exercises, which have two parts. It was tough for him to execute yesterday, but today he managed to put his body into the mirror formation of the first position without help. He got SO excited, he jumped up and ran around yelling, “I did it myself, I did it myself!! Mommy, did you see? I did it myself!” So yes, a happy moment today. For a treat, I tried to convert my normal brownies recipe into a product that met the new dietary specs. Sadly, this failed miserably. I was surprised how overly sweet it tasted to me, after having no treats for a few days. We had plenty of meltdowns from Big B today as well, but we worked them out. We also weeded a couple of plant beds, and removed a couple of zucchini plants that had taken over a big chunk of the garden. We went to bed tired.

Day 4

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Looking East over South Jordan

On Sunday, Day 4, we took a break from the home exercises to focus on keeping the Sabbath day. This was a welcome rest. Big B kept asking if we could do the exercises. He also loves taking the lemon flavored fish oil pills at bedtime, and kept thinking that he wouldn’t get his fish oil if we didn’t follow the routine (we use that leverage when needed). I went to visit family in the next valley over, and enjoyed the “me” time immensely. Michael made curry chicken and rice for dinner. He added the Brazilian beans I made yesterday as a side dish, and it complemented the menu quite well. On this day I felt loved and supported by my extended family for our new journey. There really is nothing better than to love and be loved :).

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