Before the eve of 2014

Is it just me or does time fly so much faster as one ages.  How I remember the days of my youth when time seemed so long and dragging.  Now, seems I blink an eye and another year has passed by.  It flies faster too when I am so busy tending to Luki's many therapies and school.  My life in 2013 revolved around Lucas and I wonder what I had been doing before he came along.  Before an energetic 2 year old boy entered our household, decorating for Christmas yielded a nice, manicured living room.  This year, I've noticed that among all his toys and books,  all the decorations just look like clutter. It may be like this for a while and I wonder if I should even bother to decorate and put up the lights next year.  We went to Stat's in Pasadena and purchased some new decorations that hopefully won't make the place look to cluttered.  We shall see what happens next year...

Looking back on 2013, it was an exhausting yet adventurous year for me.  I have been introduced to so many modalities of autism therapy, attended a science seminar at UCI, accompanied Lucas in his mommy and me classes 3 times a week, had a miscarriage at 8 weeks of pregnancy and still managed to work 4 straight 12 hour graveyard shift every other Friday through Monday.  And, I did not get sick once-not even a cold!  Lucas has definitely kept me on my toes and I so relish every single minute with him.  Even when he fusses (usually when he is tired or he wants to play with water), he is just so darn cute that I can't help but smile. He must be furious to see me smile while he is in agony!  Once I start thinking about the future, I get very afraid and anxious and I try not to think too much beyond today, or the moment I have him now.  My favorite time of the day is when I put him to nap and instead of putting him down in his playpen, I  hold him in my arms and just look into his peaceful sleeping face and kiss his cheeks and tiny little lips and nose.  He truly is gorgeous in every way and I still question God, "Is he truly mine?"  It feels as if time stands still or doesn't even exist at that moment and I am so at peace with him and love being his mom. 

For Christmas, Lucas got a water table from me.  Now, his favorite thing in the world (water) has become more accessible and he doesn't have to cry so much when the faucet is turned off after washing his hands.  Gabriel bought him his first tricycle (radio flyer).  Velcro needs to be used for his foot to pedal as he still doesn't get the concept of riding.  In time, I think this will come to him just as so many other milestones were reached this year.  Today, I witnessed him standing up from a squatting position without holding onto anything!  Gabe said he noticed this a week ago.  Still wobbly on the walking but my how he has picked up speed!  Today, as I went to throw away his soiled diaper and wash my hands,  he walked (ran) for the stairs leading to the garage and fell the whole flight of stairs before I could get to him.   It was such a traumatic experience for me and I am glad he was not hurt in any way - just a small bruise on his forehead. We have hence put up a gate. Hopefully, he will remember this event and not dare to go near those stairs again! He also fell off his crib once but still tries to climb out.  Here he is in action at the mall:

During the holiday, I saw a painting by a Swedish artist from 1515 depicting the nativity scene with a child and man who seem to show the characteristic features of Down Syndrome.  I thought how wonderful it was that even back in 1515, people recognized these special people to be perhaps closer to the angelic realm that human.  I wonder if it is true that people with cognitive disabilities indeed have more advanced souls than the average person.  Here is the link to the painting. 

http://www.metmuseum.org/collections/search-the-collections/436781


On that peaceful holy scene, I sign off for this year and work on some mojos to bring luck, prosperity and joy for 2014!

Circle Time and Water Play!

 Lucas continues to enjoy his time at the Mommy and Me classes three times a week through the Centro de Ninos and Padres. His favorite activity is circle time when everyone sings together.  He jumps up and down and has the biggest grin on his face.  He also loves dance time when he gets to shake shake shake his bootie! He is also very aware of the classroom setup now and will make a bee line for the kitchen sink to play with water.  When I pull him away, he throws a cute little tantrum.  It is soo cute when he throws his tantrums.  He must get so frustrated with me as I laugh and smile while he is in misery but I can't help it, it is the cutest thing I have every seen.

Within the past month he has improved so much in his walking.  I have stopped using his walker everywhere we go and have started to have him walk independantly.  He is still wobbly and will fall often, but he is improving in his balance reaction.  I noticed that he pushes himself forward using his trunk instead of his legs. Perhaps, this is due to the fact that he would push himself forward with his trunk when he was using the walker.  This is one reason I stopped using the walker as it seem to be training his brain the wrong way and starting a bad habit of walking improperly.   Now, he is forced to improve his balance and learn to propel forward using his legs more. We also got our second set of DAFO braces for his legs.  I donated the first set to our PT who will use them as demos for other parents who are curious to know how the braces work.  I also donated the Dup15q 2014 calendar to the therapy center and The Centro classroom.  I think it will look great hanging in the classroom where other parents and teachers can become aware of the syndrome and learn how to better aid parents of special needs children from its monthly tip section.  I am kicking myself everyday for not having sent Luki's picture for the calendar...maybe in 2015..

Some therapists say they noticed Luki pointing at objects he wants.  I have not witnessed this myself but noticed that he does use his index finger better at pushing buttons of his toys to turn on the music.  Another noted improvement in fine motor skill, yay!  Speech and communication seem to be the area where he is now lacking so far behind.  Although, he tends to cry more when he doesn't get what he wants -(such as more water play) I hope he learns better ways of communicating such as hand -over-hand, pointing or sign language.  This goals seems so far off in my mind, but then again, his walking seemed nearly impossible just a few months ago, so who knows?

What I want most though is for him to acknowledge me when I call his name and respond to me with at least a "mama" or "mommy".  I so desperately want to hear him say this....

Our new therapy program : Sensory Enrichment Therapy - MendAbility

This week, Lucas has started a new therapy program called Sensory Enrichment Therapy from a company called MendAbility (Mendability.com).  It is a parent run program that uses innovative ways of tactile and sensory stimulation to reduce autistic features.  It was pioneered through clinical trials at UC Irvine by Dr. Leone and a parent group started a company called MendAbility to expand access to other parents.  I pay a monthly fee of $69 for access to activities that changes every two weeks and the website for feedback. This week, Lucas has been smelling various scents (vanilla, lemon, cinnamon) while receiving tactile stimulation (rubbing of back and feet).  The research finding showed that activating the olfactory sense with tactile stimulation activates the brain much more than just tactile or olfactory stimulation alone.  Lucas seems to tolerate it okay, although as a two year old, he will not sit still for a long time to savor a scent and I end up chasing him around with something in front of his nose while at the same time attempting to scratch his back in "8 formation" - a funny sight.  Actually, he initially tried to eat whatever I put in front thinking it was some sort of snack but lately, we noticed him taking nice long whiffs!  Progress.  He also listens to classical music and seems to like it (unlike myself)and he gets spritz of mint ginger spray on his pillow at night while I massage his feet and legs with kukui nut oil.  Lucky little fellow...This method jives very nicely to the brain plasticity theory and the Anat Baniel Method which we had to stop due to it being not affordable for our budget.  There is no therapist fee since I will be doing all the activities with Lucas and the materials in MendAbility all seem easy to get and a parent said she got most of her supplies at the 99 cent store so I am hopeful this will not break bank. I even made a printout of the two weeks activities and shared it with our ABA therapist, Carol, who seems on board in incorporating the activities during ABA sessions.

According to Gabriel, Lucas took 15 laps around his physical therapy room today!  Just two days ago, he was only able to do 4 laps.  It's amazing how fast he is making progress especially in gross motor skills.  By far, PT is the only therapy where he seems to be doing well. Perhaps, it has something to do with making Lucas use his walker everywhere we go and attempting to wean him off his stroller.  He must "walk" to school, mall, therapy sessions.. It takes just three times longer to get to our destination and does a number on my back but it has been worth it to see him progress so much.  Recently, I solicited first year graduate engineering students at Cal State LA to attach a long pole on the walker so I am not stooping so low all the time.  They researched the company that makes the walker and found out that they sell a bar for $120.  When Kaiser said they will not pay for the bar, I went to Home Depot and got two wooden poles and 6 clamps and voila I have saved myself $110 and my back is saved!
(Insert pic)
Our speech therapist said that if Lucas does not meet certain goals laid out by the insurance company, then he will get dropped by the end of the year and Regional Center will have to take over in providing speech therapy. This makes no sense to me.  If a child is not progressing well in a certain area, wouldn't it make sense to continue that service until he does rather than just drop him?  We shall see what happens come 2014 which is only a month and a half away.

All other therapies-OT, ABA, ST seem to be the same to me.  Maybe it's because I don't have a professional eye for discerning the difference but I am wondering if they could be doing more, especially during ABA.  I don't see anything being done that is in line with Pavlov's method of positive reinforcement.  As I see it, there is no "carrot dangling in front of him" as reward.  But then again, he is only two so you can't do too much.

He still has a fascination for water.  The first thing he does now when we get to the classroom at the Centro is make a bee line for the sink and crawls right to it.  He is more aware and sharper than I think I give him credit...Gabriel said he does the same thing at the children's playroom at church.. He knows the sound of running water and will go toward it with great focus. And, as soon as we turn the water off after washing his hands, he throws a little tantrum with his hands flailing up and down while crying.  It is sooo cute to see him throw his tantrum..it's just delicious :).

Lucas likes bubbles, too.

We just keep on keeping on!

On my fortieth birthday, Lucas gave me the best present ever by walking 8 steps unaided during his PT session!  It was wobbly but he knew how to regain his balance when falling seemed eminent.  I really didn't know if this day would ever come but I am so relieved.  Not only in his walking skills, but he is cognitively making so much strides.  I am not sure if this is a natural progression of development or a result of all the therapies and supplements he takes.  In our monthly newsletter from the CBR, was featured a clinician and researcher, Dr. Michael Chez of Sutter Medical Center, who developed a product called Carn-Aware - the only double blind placebo controlled study done on a supplement for the treatment of autism.  I wrote him a  letter and invited him to the science meeting held at the MIND Institute in Davis and to my utter surprise, he said he was interested in attending.  It was too bad I was not there to meet him and learn a bit more about his future research projects related to autism and whether he would be open to including Dup15 kids in his research.  The hand of God seemed to have played a role in me contacting him just before the science conference and him being located in Sacramento, a driving distance to Davis. 

Anyhow, Lucas seems more animated and well... "aware" after starting CarnAware.  The only side effect I noticed was disruption in his sleep at night time.  I had to reduce to dosage from 200 mg capsule to 50 mg per day and will slowly titrate it back up.  I also noticed that his sleep disturbance  is more pronounced on the days he gets his B12 shot (10 units) so I am holding back his CarnAware on the day he receives his B12 shot (which is twice a week).  He is not more verbal but is making great improvement in his walking.  It may have also to do with the fact that I am weaning him off the stroller and "forcing" him to walk more with his little shopping cart. Everyday I try to take him to the mall and have him walk from the car to the play area.  He is catching on and at times hoists himself onto the cart so that he doesn't have to walk, or he will just lay on the ground and start crawling.  As long as he moves, I am happy. We also got a disabled placard for the car which kind of makes me sad but grateful we are able to use it. 

 At times, I notice he stops moving and just kind of sits still as if he is in deep thought or he is trying to figure something out.  Overall, he is a very content and happy little boy with the most beautiful smile and the cutest laughs.  I am so in love with him and I can't wait for the day he tells me, "Mommy, I love you."

Luki rode the Merry Go Round for the first time!

Our first annual IFSP meeting with Candy Sandoval.

Yesterday, our little family had our first annual IFSP meeting with our Regional Center case manager, Candy Sandoval.  We reviewed our goals for the coming year, educational concerns and the possibility of enrolling Luki in a Mommy and Me class for disabled children.  I was happy to learn that Luki has met two of the goals we planned out last year (holding his sippy cup independantly and eating finger foods).   When we planned out these goals last year, I have to admit I wasn't sure Luki would ever meet them.  I am so happy he has and surprised at how gradual was the process of him meeting these milestones. Our next goals are for him to walk independantly, use utensils for eating and be able to say mommy and daddy. 

The day programs offered to disabled toddlers are either a drop off or mommy & me sessions.  The drop off program is closest to our home but I am so hesitant to leave him alone as he still can't walk or talk.  The mommy and me program is offered in the campus of Cal State LA- a bit of a drive but it may be worth itt.  This also means wee have to reschedule all our therapy sessions - a feat hopefully which won't be too painful.

Candy also told us that with Luki's autism diagnosis, we may be able too stay with Regional Center long after he turns three years old when the school districts take over his care. I would like to ask Candy if we can somehow have hhim in the Rosemead school district - I heard such bad things about Montebello.  She also said we may be eligible for a medicaid waiver as a seondary insurance along with what we have right now, which is Kiaser.  This is such great news as it may mean we can rest assured in being able to take him to specialists outside of Kaiser network such as the Dup15 clinic at UCLA without having to worry about breaking bank.  It may also mean we can again take him to naturopathic doctors, too.

Now,we have to look forward to a meeting witth the school district (Montebello) in February , starting his mommy and me classes at Cal State LA and continuing all his therapies (ABA, OT, PT, ST, infant stim.)  These days Luki keeps busy in his splash pool.

Or, he is busy doing laps at the pool with daddy.

Update: during Luki's last ABM session, he walks on his hands! He has never done that before and the therapist said since walking on his feet and on his hand are next to each other in the brain,it will  translate   to him being better able to walk on h is feet soon.  I can't wait!


For now, so grateful Luki eats,poops, sleeps and plays well and is without seizures!  God willing, he will never have them!

Status post Anat Baniel 3 day intensive therapy sessions.

 

 

 

It has been four days since Lucas has completed his intensive 3 day therapy sessions with Sonia Aragon, a certified Anat Baniel method practitioner (above is a picture of Sonia at her studio).  I wasn't sure what outcome to expect-would he start to walk? talk?  It really is putting a lot of faith and expectations on a method to give such miraculous results after just three days, but followers of the method said "miraculous" results would be found after just a few treatments.  Well, I am not sure if what I have noticed in Lucas these few days are "miraculous", but there definitely does seem to be a shift in him for the better in the areas of attention and movement. 

 

After the first day of therapy, Luki took a three hour nap!  He has not taken a three hour nap since his infancy.  The therapy involved very gentle touch and he was not required to do any strenuous, active movements so physical exhaustion doesn't seem to be the reason for his tiredness.  I thought that maybe the touch and massage relaxed him so much that he was lulled into sleeping for so long but he didn't fall asleep until a good 3 to 4 hours after the session.  He did take a quick nap in the car on our way home.  According to Sonia, it is very common for children to get very tired and hungry due to the brain processing so much neuromuscular information.  Millions of cell to cell synaptic connections are made and the nap may help for the brain to process all the information.  I remember in college that I would get very hungry and tired when I was learning a lot of new information for a challenging course, so I see merit in this rationale.  The second day, Lucas slept for 1 1/2 hours which is common for him when he gets very tired.  The third day, we did one session and decided to use the last session as a follow up in two weeks. 

 

Between the time before our next session, I am monitoring Luki and seeing if there are any new milestones.  Today, during speech therapy class, I did notice a much improved attention and physical strength (see video above).  Luki hoisted himself up on a table and lifted his legs up in the air in a prone position.  This showed that his trunk and torso strength has gotten much better.  He even hoisted himself onto his stroller.  Also, when the therapist and I started to sing his favorite song, Twinkle, Twinkle, his face lit up and he stopped what he was doing to listen.  Once we completed the song, he went back to playing and crawling about.  So, this shows he has recognition of his song and also has anticipation of when the song ends!  I always knew he was registering a lot more of what was going on around him, but today, it was so much more evident and recognizable. He also seems to know that bowls carry food or snack inside.  We gave Luki a Tupperware bowl with different wooden shapes inside and he must have thought the shapes were cookies because he put them to his mouth as if he wanted to eat them!  I was so happy on my way home today after therapy.  I had never seen such progress directly.  It is due to the Baniel therapy, coincidence or the combination of all his therapies which are are really helping him.

 

At home, Luki is much more mobile (video above).  Rather than have him limited to the play area in the living room or his playpen, I have him crawl up the stairs, hallway, kitchen, bathroom and wherever his little heart wants to go.  He has become such a good crawler and his endurance is so much better.  I have him back on creatine which may be helping his muscle tone.  And, he has so much more curiosity of his surroundings. 
 

 This is Luki after his PT session.  He has his spio vest and the AFO braces on.  Also, his new mode of transportation is his baby shopping cart.  We use it for his walking exercises during PT and I give him a ride to the car on it.  So cute!

In concluding, I would say I am very happy to have taken  Luki for the Baniel therapy and I plan to continue more sessions with Sonia in the future.  Perhaps, once or twice a month or what our budget would allow.  If nothing else, Luki likes the sessions and the gentle massages seem to relax him.  If he is happy, then I am happier!  :)

 

Just look how happy Luki is playing in water during his ABA session today with Ms. Zoe. 

And look who is eating noodles now!

 

Moving forward into the unknown.

If living with my son in a remote island away from all the hate, bigotry, bullying and other negative behaviors people exhibit towards one another is a possibility, I seriously would consider it.  As days go by, I notice more and more how Lucas' abilities lag behind other children of his age.  This saddens and frightens me.  When Luki was born, it was my little family against the world.  Our family would be a cocoon against the harshness of the world and we would create a safe haven where we can grow together.  I did not anticipate that we would be so dependant on other people and the services offered by the medical profession and therapists.  I hate being dependent on others and this new reality is really making me feel anxious because I don't feel I have ultimate control of my life and neither does Luki.  I have come across a few people in life who have been genuinely kind hearted and well intentioned; but, mostly, I have found people to be shelfish, callous, shallow and devious.  To think that our lives would be at their mercy makes me so angry and hopeless.
Yesterday, I had a particularly unpleasant encounter with another coworker that makes me so angry and sad and worried about the future.  In the past, I've been able to brush off such situations and move on.  I didn't really care that much; but, for some reason now, with Luki being "special" situations where people are small minded, immature and callous make me so so sad.  Things get magnified in my mind out of proportion to their importance in the greater scheme of things in life and I can't shake it off so easily.  When someone is mean to me or belittles me, it feels as if they are also being mean and belittling to my son and I have to control myself from going AWOL.  How will I manage living in modern day society where push and shove is the every day norm without it feeling like they are hitting a raw nerve? Will this be my new life?  Will I become an oversensitive, hysterical mess where every innuendo is perceived as a threat and insult?  Never mind managing Lucas, how will I manage myself?  Perhaps, consulting a life coach/counselor would help but I'm so short on time and money.

 Just writing this entry is giving me chest pains.....

Anat Baniel Method

So, as I was listening to the Thrive Doctors on Contact Talk Radio, I was introduced to a new therapy method called the Anat Baniel Method for special needs children.  Anat Baniel is a disciple of Dr. Moshe Feldenkrais who developed the technique for body rejuvenation and recovery back in the 1940's in Jerusalem.  Baniel tweeked his system and started her clinic in Marin County up in San Francisco. Claims have been made that children who doctors have dismissed as hopeless cases are thriving and living beautifully as adults.  One such story recounts a girl who has 2/3 of her cerebellum missing but started the method at 6 months and now at 20 years of age has earned two masters degrees, is a practicing social worker, wears high heels and is to be married!   I am so intrigued by what this method can do for Lucas that I paid the $100 for a 10 hour training video from the Anat Baniel Center.  I also found a practitioner here in Long Beach.  I am hoping to attend  a free seminar held at the We Be Well Wellness Center in Long Beach with Gabriel to find out more information.  I doubt the therapies would be covered by Kaiser insurance but if it indeed yields  the amazing outcomes they claim, then I am so willing to pay out of pocket.  The center does offer discounted rates for purchasing multiple sessions at one time.  I wonder how many sessions need to be booked before results can be seen.

There are so many different modalities for treating autism and neurodevelopmental delays and I am not sure what would work for Lucas.  There is the Relationship Development Intervention(RDI Method) and the  neurodevelopmental learning institute program in Marina Del Rey.  "Relationship Development Intervention (RDI) is a trademarked proprietary treatment program for autism spectrum disorders (ASD), based on the belief that the development of dynamic intelligence is the key to improving the quality of life for individuals with autism. The program's core philosophy is that individuals with autism can participate in authentic emotional relationships if they are exposed to them in a gradual, systematic way. The goal of treatment is to systematically build up the motivation and tools for successfully interacting in social relationships, to correct deficits in this area that are thought to be common to all people with autism." (Wikipedia)

 six objectives are: 

• Emotional referencing: The ability to learn from the emotional and subjective experiences of others 

• 

  Social coordination: The ability to observe and control behavior to successfully participate in social relationships 

• Declarative language: The ability to use language and non-verbal communication to express curiosity, invite interactions, share perceptions and feelings and coordinate with others 

• Flexible thinking: The ability to adapt and alter plans as circumstances change 

• Relational information processing: The ability to put things into context and solve problems that lack clear cut solutions 

• Foresight and hindsight: The ability to anticipate future possibilities based on past experiences 

(from Autism Speaks)

RDI focuses on cultivating the building blocks of social connection—such as referencing, emotion sharing, coregulation, and experience sharing—that normally develop in infancy and early childhood. RDI is a family-based program, where trained consultants support families to alter their interaction and communication styles. There is a period of parent education, followed by an assessment of both the child and the child-parent relationship. After that consultants support the family through a set of specific objectives to build a "guided participation" relationship between parents and child that will allow the child to once again become a "cognitive apprentice" to the parents. Once the cognitive apprenticeship is in place, the family can move on to specific cognitive remediation objectives for the child. These are developmentally staged objectives designed to restore optimal neural connectivity through a series of "discoveries" and "elaborations".

The latter method is claimed to provide "measurable, significant improvements in general intelligence, and IQ, language and auditory processing, cognitive abilities, memory function, learning abilities and academics which consistently outperform other singe-method approaches." Both sound costly and not covered by our insurance.  In August, we are to have our first Regional Center meeting at the school district and I have to decide what I am going to do about his education.  Do I send him to the crappy Montebello School District public special education program, an expensive private school like Walden or Montessori or the Westmoreland School for autism in Pasadena - nonpublic school (whatever that means)?  Where would he do best?

Lucas is getting taller and heavier, although he still looks very lean.  He climbs out of his playpen and has bonked his head on the floor twice, already!  He has started all his services and I am a busy mom on the days I am not working.  He has PT, OT, infant stimulation twice a week for one hour each session; ABA three times a week for 2.5 hours per session for a total of 7.5 hours per week, speech therapy once a week and now I am thinking of adding a session of Anat Baniel method.  He seems to enjoy his sessions and the attention he gets from everyone; he thinks it's play and not "therapies".  I, on the other hand, am exhausted by the end of the week.  I think the main energy drain is carrying him around as he can't walk yet and is getting bigger and heavier.  My days feel like a puff of smoke that is gone too fast...

I pray God lead me to wisdom and good judgment in choosing the therapies which work best for him.

God has answered my prayer in the form of a disabled son.

                       

God, guide me to the path that leads to the highest and greatest form of love. This is my prayer.

                                          


It's all slowly making sense now.  Pieces are coming into place and I can see how events of the past have come to shape the reality of my present life.  I am seeing how God has answered all my prayers - especially one that I have repeated  for the past 10 years.  The way in which he has chosen to answer them has taken me aback and left me pondering more of His mysterious ways.  The manner in which my prayers have been answered is not at all what I had expected,  but then again, I just put out my wish to the universe without specifiying the details of how God would fulfill and manifest it in my life.  But first, let me go back in time to some ancestral history to get a fuller picture of how I got to where I am today.

My paternal grandmother had 8 children, I believe, most of who died during the Korean War in their teen years.  Only three of her children survived into adulthood: my father, my aunt (his older sister) and my uncle (his younger brother).  My paternal grandfather was a farmer and a raging alcoholic, an addiction he passed on to my father.  His mother, my great great grandmother, was known to have a ballistic temper and would fly off the handle quite easily.  My father inherited her temper but I am suspicious as to whether they both suffered a mental condition of some type such as a mood disorder.  My father's childhood was lived in the context of the end of the Korean War where poverty made people mean and preoccupied with  getting their own ahead in life.  My father lost his father at an early age (cirrhosis of the liver, most likely)  and was sent to live with his uncle as a photography apprentice by his mother as she was unable to support all her children.  Growinbg up, he never fully experienced unconditional love and was perhaps even abused by his uncle's wife who resented him living in her household.  He watched as his uncle lavished praise, gifts, the best they had to their only son while treating my dad more like a servant than an apprentice.  This experience had a deep impact on his psyche and growing up without love shaped him into a person who was not capable of either giving or receiving authentic love from\to others as well as to himself.  His life lead to self abuse, alcoholism, verbal abuse of his children and physical\ verbal abuse of his wife which eventually lead to divorce.

Growing up, I had alot of resentment towards my father. I still do.  I did not understand his self destructive ways. Now, I understand what lead him to be who he was.  Ever since this epiphany, I have prayed for over 10 years that God would guide me to the path of greatest love in its highest form since I knew where the path lack of love lead.

God has answered my prayer in the form of a disabled son.

...to be continue.

Luki's new milestones since turning two.

Lucas turns 2!

How time flies! Lucas has turned 2 years old.  It seems like yesterday I was holding him in my arms and spellbound by his little body on the day of his birth.  Time waits for no one, that's for sure!  We spent his birthday at Redondo Beach with Gabe's parents and ordered far too much seafood at the korean restaurant on the pier.  Sashimi, steamed crabs (one for each person, what a treat!), seafood platter, Korean style clam soup...definitely would have set us back a bit, but Luki's grandma insisted on paying for lunch.  Unfortunately, the total came out to be more than what she had brought-even she was surprised at how expensive everything turned out.  Is it just me or is the food price going up these days?  We had a nice lunch and Luki got to wade in the ocean water with his feet for the first time.  He was taken aback by the coldness of the water and stood there like an ostrich with one leg up so as not to get his foot wet.  Of course, we had to hold him as he is still not free standing.  He also seemed to like putting his hand through the sand.  We decided to come to the beach on another day in summer and have a proper picnic with a tent, canopy, chairs and home packed food and spend the day at the beach for Luki to enjoy. I am really looking forward to it although Gabe is worried it might be too much work for him to lug things around and set things up. 

On his second year well baby check up, Luki's pediatrician was so surprised to see the positive transformation in him in just six months before when she last saw him.  He seemed to have better control of his muscles, "verbalized" more (with ohms and awws) and seemed more aware of his surroundings.  I, too, feel he has come a long way in just six months.  I am not sure what exactly has made the difference; was it the supplements, physical/occupational therapy, infant stimulation, baby gyms or, all of the above.  I think what is also overlooked in his improvement is the free time I give him to explore his toys and surroundings on his own term.  He manages to stand and walk around the coffee table several times during the day, hold on to furniture and the sliding glass door to stand and walk sideways.  Rather than me always coaching him to do things, I think this approach has been very successful.  The other day, I called out his name and he stopped what he was doing and made eye contact with me as if to say, "Why did you call my name, mommy?  What other adventures are we going to have today?"  When I verbalized my surprise and happiness at his gesture, he smiled, looked away and continued playing.  Also, when I turned on nursery songs, I noticed he started to clap with good eye contact as if to say, "Mommy, we need to clap our hands when the music comes on."  I couldn't believe what I was seeing!  Could I just be imagining  these things? Wishful thinking on my part? Could be, since these occurances are not always consistent.  Luki needs to be given way more credit for his awareness than I have been giving him although he not where I would like him to be.  He IS very aware of everything around him and is very sensitive to other people (especially my) feelings.  Once, when I cried in front of him, he started to cry with me.  When I laugh, he laughs with me, too!

During his Well Baby checkup, he started to cry and fuss when I put him in his baby gown and laid him on the examining cot.  It almost felt as if he remembered the many times he got poked for blood draws and thought he might get poked again.  It's hard to tell for sure and I am only going by my intuition since Luki can't talk, His latest hobby is playing with my hair (pulling it) as well as his own.

Luki still hasn't started his ABA, yet. But, he has met an incredible physical therapist who really seem to connect with him.  Unlike other times during his PT sessions when he fusses and cries after a few minutes, he has not cried once with Ms. Erica.  My prayer now is that he will meet an equally connected therapist for his ABA sessions. 

Eureka! My crabbiness has nothing to do with any situation or person but everything to do with how I feel about myself.

     So, lately I found myself feeling a bit down and crabby. I;ve been trying to figure out why I am feeling this way.  Given, Luki has recently been diagnosed with autism might have something to do with it.  But, I know he is a very special and intelligent soul in a somewhat different body from other people and  I am at peace with his condition - so long as he doesn't develop seizures and have other health issues.  This is just how he has decided to manifest into this world in this particular lifetime and what an honor it is that I have been chosen to be the mother to such a brilliant soul.  I thought maybe it had something to do with Gabe as I have been feeling short with him on trivial things.  After reflecting a bit, and perhaps with some inspiration from Spirit, I had the understanding that this negative feeling which I have been projecting outward has nothing to do with something outside of myself.  In fact, it is a negative feeling I have toward myself which gets displaced onto things/people outside of myself.  This understanding must have come from above or, I am getting better at understanding myself and how I tick, or both.   Perhaps, discernment like this comes with maturity and age - I am getting old (er).  After having realized this, some of the negativity dissolved away.  It was a pity party for myself and a bit of low self esteem (which may explain why I have been  shopping for clothes so much lately) which my mind was trying to blame on other people and situations. After this realization, I found peace again with my husband and my situation with Luki.  Living in this physical world will always give me  low grade anxiety even with all the faith and trust I have developed over the years for God.  The three dimensional physical plane is not an easy classroom.
Now, the dilemma remains: how do I find more self esteem and peace with myself?  Is it possible to generate that from within or does it need to be given by someone (force) outside of myself?  I fret that I will be treated less than by other people because of my son's condition.  I worry I will not be able to relate to normal people if our situation  make us live a very differnent lifestyle.  I wish I had all the self confidence and "I don't give a crap about what other people think" attitude.  But, I know me.  I worry ALOT about what other people think about me.  I always felt like an outsider my whole life and have tried to blend in with whatever group I am with and when that was not possible, it always hurt.  We all want acceptance and inclusion, isn't this normal? Don't we all feel this way?
What is the lesson in this situation?  Find contentment with my authentic self and don't worry too much about being accepted or being a people pleaser. This is a hard lesson for me and I know my son came into being to help me master it.

I spoke with Michelle Whitedove again on a radioshow.  She just reiterated how special Lucas is and that I am worrying way too much.  She suggested I send him to Montessori and help him with vissual and hand coordinated activities.  She said he was going to surprise me and that he was an evolved being here to share unconditional love.  I love him so much and am so grateful to him.







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ABA, Gargus and Research Ideas.

Yesterday, Luki got his first ABA evaluation.  It was pretty lengthy and comprehensive and he has another one on Wednesday.  It was so sad to answer "no" to so many of her questions.  "Does he feed himself? Does he play peekaboo? Does he point to things? Does he say mama or dada? Does he acknowledge his name?" No, no no and no.  To me, Luki is perfect, but after having answered no to so many of these questions, it just reminded me of how very different he is from regular babies.  I worry that the ABA program would be too harsh for him or that it would give him OCD.  But, I know at this time, this is the best for him.  He gets very frustrated and stressed when he is made to do things and I hope the program does not stress him out too much.

Last Wednesday, I also had my first meeting with Dr. Gargus and G. Calvert to discuss future clinical trials for the IDIC 15 population in the Alliance's registry.  He stated that he is interested in looking into a mitochondrial connection to autism, calcium channelopathy and plans to purchase sophisticated EEG machines and conduct sleep studies - all very relevant to Luki's condition.  When I brought up my concern about a possible lipid metabolism problem, he stated that his group is working on a lipid molecule from marajuana that seem to reduce autistic behavior.  I am looking forward to more research and results for testing of this molecule - eicannocannibus?  can't remember the exact name. Although the IDIC 15 clinic was just launched at UCLA, Dr. Gargus said UCLA has a much smaller autism research and treatment center compared to UCI and it caters to wealthy families that may not even need insurance to pay for services.  This was one concern I had about taking Luki to the new IDIC 15 clinic.  How much would it cost us as it would have to be out of pocket since UCLA is out of Kaiser's hub of providers. 

We invited Dr. Gargus to the annual scientific conference at UC Davis Mind Center and he hooked us up to Dr. Kimonis who is heading up the Prader Willi study at UCI.  I hope to meet or speak with her in the near future. 

I question if I am doing everything I can for Luki and wonder if he knows how much I love him.  I wish I could have him just say one word for me now - and an "I love you" would take me over the moon.  I wish he can tell me what bothers him, I would like to know so badly. 

Last week, I also suggested a research idea to the scientific advisory board which involved a possible inhibitor study of UBE3a gene product.  I suggested various ubiquitin ligase inhibitors be studied and assayed on  IDIC 15 brain cell lines, then given to the knock in mice and measure any improvement in autistic behavior.  I was told by Dr. Chamberlain that there are three kinds of ubiquitin ligase inhibitors and the one we are looking for (with a HECT domain) has not been discovered, yet.  This inhibitor has become my holy grail.  In the meantime, it doesn't stop us from trying other experiements on the nature of UBE3a.  Perhaps the ideas I am about to share have been tried and studies already, but if not, it is worth taking a look at.

First, I am curious to know whether the UBE3a gene products in IDIC 15 brain is stucturally and functionally the same as normal UBE3a.  Dr. Reiter's finding that the copy number dosage does not necessarily correlate with the severity of the symptoms suggests that there may possibly be a defective translational product in the presence of the extra UBE3a genes.  Could it be that the translational product of UBE3a undergoes a protein misfolding in the presence of the extra genes such that they do not perform at the same level as the UBE3a from those with a normal copy number?  Do the  subunits dimerize? trimerize? or just look and function differentlyand less efficiently than the normal enzyme?

I am wondering if it is possible to isolate the ubiquitin ligase form the IDIC 15 brain cell line (without alterring their endogenous structure in the process), and then run it on a gel to separate by size and charge and compare it to ubiquitin ligase from a normal copy numbered brain cell and see whether they actually do have the same characteristics.  Could we get even further confirmation through x ray crystallography to see the structure? 

If the gel study shows that the IDIC 15 E3 ligase indeed is different from the normal, what would be the effect of giving these cells more of the E3 ligase that functions properly?  I wonder if such a study is being done for the Angelman Syndrome. 

On the other hand, if the gel study shows that it indeed is the same as the E3 ligase in normal people, then rather than waiting for the discovery of a HECT domain UBE3a inhibitor, why not use the endogenous substrate for the enzyme, which I believe is an ARC protein. What would be the efffect of giving more of the ARC protein?  Could the ARC protein be modified so that it somehow irreversably binds to the UBE3a ligase (maybe form a strong covalent bond somewhere on the enzyme) so that the enzyme can no longer uptake more substrates thus rendering it inactive?

These are some crazy ideas I think of in the middle of the night and I hope to present them to the science advisory board.  Hopefully, it doesn't sound too far fetched and I don't offend anyone's scientific sensibilities.  If nothing else, they can get a good laugh at it. 

Our first visit with a DAN certified naturopathic doctor.

Today, Lucas had his first visit with a DAN certified naturopathic doctor, Dr. Karima Hirani (click here for her home page) at the Hirani Wellness Center in Culver City, who by the way is a REAL doctor with an MD, MPH after her name. This credential was reassuring to me as I wondered the validity of their practice.  The main concern I had was how safe all the supplements I am already giving Lucas is, given I have started them by word of mouth from other parents with IDIC 15 or through various autism support sites such as TACA.  No physician I have dealt with thus far at Kaiser have had anything to say on the subject of supplementation, they would "neither deny nor promote the efficacy of supplementation".

To my surprise, Dr. Hirani complemented me on a job well done with the supplements I have already started, reassured me that they were safe and were rated high (A being the highest rating and D being the least effective intervention) on the list of "Parent Ratings of Behavioral Effects Of Biomedical  Interventions" list (available on Autism.com) generated by the Autism Research Institute in San Diego. This list shows  27,000 parent ratings of various  interventions such as supplementation, special diets, detoxification methods and pharmaceutical drugs that either helped their children get better, worse or showed no effects. The number one beneficial intervention on the list is Detox (chelation) followed by gfcf diet, paleo diet, Vit B12 shots, melatonin (which she said was an antioxidant! I didn't know that! always thought it was just a hormonal  sleep aid),  food allergy treatment, hyperbaric oxygen therapy, fatty acids, digestive enzymes and diflucan (an antifungal)- just to name the top 10 effective treatments on the list.. What was even more surprising to me was that she told me the dosage I was giving Lucas could and should be doubled for maximal effect!  On one hand, I felt relieved that I was not doing any harm to him by the many supplements I have started him on but on the other hand, I wondered if the dosage she was recommending isn't just a bit too much for him, given he is only 22 months old.
Let's take for example, the DHA recommendation: I have Lucas on a daily dose of 800 mg of DHA which even the neurologist said was a bit much, but Dr. Hirani said I should give a mixed EPA\DHA blend at a whopping 1.5G!  She showed me evidence of it helping with learning\cognition, protection against stress, autism, GI issues... I have also read the Japanese article on this but still feel 1.5G at this age maybe a bit too much.  Also, wouldn't it thin out his blood too much creating a risk for internal bleeding?  According to her, this has never been an issue with her patients.  I am hesitant and yet, I don't want to miss out on doing as much as possible for him before the age of 3 when according to scientists, most brain development occurs.  Along with the higher dose of DHA on her Action List, she included Vitamin B12 shots twice a week, double the L carnitine dose from 250 mg which I currently give to 500 mg, probiotic (EnZym-complete DPP-IV II Isogest (given at the start of a meal), calcium powder with vitamin D (important especially if on a gfcf diet), DMG (dimethylglycine, a modified amino acid which has shown to improve speech), Vitamin E Alpha Gamma Blend-through her Wellness Center; and Super Nu Thera.  She recommends Kirkman company for all supplements as this company specializes in products for autism.  She also does NOT recommend the Child Life brand of probiotic and multivitamin I give Lucas.  She said there was "nothing really in it".  Good to know.  Other than the supplementation advise, she recommend I start a gfcf diet, purchase the book "Special Diets for Special Kids", schedule a fasting blood work, get blood work through Kaiser (serum mercury, RBC magnesium, ASO, antidnaseb AB, cortisol, gliadin IgG, IgA, erum zinc, copper); get a NutraEval lab work (worth $800!-not covered by insurance) to test for food allergies and immune system problems, get stool and urine sample for parasite, yeast and heavy metal studies.  She gave me a kit for the urine sample which needs to be sent out to France (yes, France!) for analysis.   I am sure I am leaving some thing out here but luckily, she gave me a recorded CD of all her recommendations for me to study.  She also gave me a contact email for the local TACA leader and recommends I attend one of their meetings.

Whew!

So, on the drive back home as my mind is overwhelmed and spinning, I felt glad I scheduled today's consultation and also quite happy that she was so thorough on all her recommendations.  I have heard about alot of these recommendations through other parents, but it is reassuring to get a professsional's take on it.  The issue I have with actually carrying out the plan is, unlike other cases of autism where the cause is a mystery and a battery of tests need to be performed to find out what actually is causing the problem, my son has a known genetic condition called IDIC 15 that over produces certain factors in the brain causing delays, possible seizures and autism.  His autism is not due to a food allergy, heavy metal poisoning (he is only 22 months, where would he get that kind of poisoning?).  There may potentially be an immune system problem, but how likely would that be in producing autism?  At one point, I would like to carry out all the lab work she recommends but right now, I feel he is too young and aside from his autistic qualities and delays, he seems quite content, eats and poops very well.  If I had all the money in the world, I would do it now, but these tests and supplements aren't cheap and we can't take out a second mortgage to do all these things.  Even I could probably benefit from all these supplementation, who wouldn't?  I think it would be better to wait until he is a bit older and space them out so we don't break bank. Today's consultation alone cost $400 excluding the stool/urine kit and Vit B12. It was money well spent.  Hopefully, we will be able to apply these costs (including future purchases of supplements) to Gabriel's Healthcare Reimbursement Account.  It really is too bad that Kaiser doesn't cover any of this (except a few lab work) and they don't provide their own naturopaths.  Maybe in the future,  they will. I can only hope. 

Living with Autism, the next chapter in our lives.

gorillas and ribbit ribbits

So, we took Luki to the San Diego Wild Animal Park to meet the gorillas, the ducks and giraffes we have been reading about in his bedtime stories.  We spent a nice weekend down in San Diego courtesy of the groupon deal I purchased 6 months ago for 4 tickets to the zoo, one night stay at the Radisson in Rancho Bernardo and breakfast for four.  I was hoping my brother Mik would join us with his girlfriend, Melody, but he informed me that they have broken up recently.  He did come to the zoo with us, alone.  We met up at the hotel which happened to be in the same city Mik used to work so he was well familiar with the area.  He took us to a Japanese restauarnt near the hotel and we discussed why it is  that most Japanese restaurants in San Diego county are owned byKoreans.  We chit chatted about his recent breakup with Melody and how his work was coming along.  Melody apparently is eager to get married and start a family but Mik wants a prenup before any legal commitments.  How romantic.  He also said he quit his job as a director of a electronic startup company  because they never follow his advice and also said he wanted to start his own business.  I have heard this  for about 10 years now. Maybe this time, it will happen.
Lucas fell asleep right away as we arrived at the Park.  This is so like him on top of the fact that he had alot of rice with miso soup for lunch at the Japanese restaurant.  Like mommy, rice puts him to sleep.  I was hoping he would look at the gorillas and start giggling as he does at home when looking at the cartoon picture of a gorilla in his storybook.  Unfortunately, he didn't look directly at them at all.  I am not even sure he was aware they were there. He was very quiet and attentive to the environment around him-the trees, people, other small kids and for that I felt relieved.  He seems to be more aware of his environmnet than before and for that I am grateful.  I get a high on every little milestone and accomplishment he makes.  I think if he really saw the gorillas, he would be scared.   He didn't really care for the ducks or the giraffes and in fact started to cry when the ducks came too close to him.  He didn't really care to pet the goats in the petting area, either.

  Recently, I have noticed that Luki giggles and reacts to specific sounds and words.  He has actually done this around the age of 6 months.  The first word he giggled at was 'purple' followed by Gabriel coughing and clearing his throat which I managed to get captured in video and uploaded to YouTube

Snap out I must for I am now a mom of a special needs child!

        The days seem to fly by so fast with a baby in tow at home.  A few feedings, diaper changes, naps and baths and the day has flown by so quickly. Today was no exception and I just wish I could etch each second with Lucas in my soul and stop time for a while and really be present in each moment spent with him. In practicality, food needs to be prepared, the house needs to be cleaned, etc..Maybe because of his condition, I feel as if something is going to happen to him and I have to distill all this bonding before such an event happens.  It's probably not a healthy way to think but the IDIC 15 Alliance has issued a SUDEP warning which stands for sudden unexplained death .......Researchers have found that some  of the children with this condition die unexpectedly and nobody can find a reason why this happens - somewhat like SIDS but in older children.  The thought of it makes me so very sad and I try not to ponder such an event.  I am declaring to God, the universe and all creation that my son WILL walk and talk. But, as evidenced by his play at the kids play area at the mall today, I have a feeling God's ressponse may take some time.
       While toddlers younger than Lucas were walking and interacting with other children and their caregivers, my Lucas was having a hard time just standing and getting his balance and establishing proper gait due to his ataxia.  He crawled pretty well to get to an activity station but I could tell the physical exertion was making him tired easily.  Upon my coaxing him to play with the toys attached to the walls, he seemed myopically fixated at repetitively spinning one toy item.  And, instead of showing interest at climbing toy cars, buses, he seemed pleased just to gaze at his hand and laugh at it.  One part of me thought,"well, he just wants to be a baby a little longer" and I found it cute.  But, another part of me felt very sad that he was missing out on being like all the other kids, being normal.  As a baby, children are not judgemental of differences,  but I wondered how he would be accepted as he gets older.
      Once again, sad feelings takes me into a deep philosphical thinking mode about life and the meaning of it all and I waste precious time asking myself rhetorical questions of why, why, why?  Once I get into the thick of it, it gets so hard to snap out of it.  But snap out I must, for I am now a mom of a special needs child - words I never thought would be uttered by my lips.  And with that comes a  very disciplined lifestyle and a deeper kind of trust and faith in God's plan for good.  At least, that is how I choose to believe.  Maybe on another blog, I will address all the crazy as well as the profund spiritual rationales I've come across.  For now, I sign off for my precious Luki  has fallen asleep next to me and I want to gaze a little longer into his sweet little face before I fall asleep myself.
Good night.

God Throws Another Curveball.

       Last Thursday, I had a follow up meeting with the geneticist to go over the more advanced microarray genetic screening test for Luki.  I went in thinking I would get a more accurate picture of the extent of chromosome 15 duplication.  The original standard genetic test does not reveal the fine details that reveal how severe his symptoms are; it just told us that he HAD the chromosomal duplication and apparently, it's important to find out the extent of the duplication because the longer it is, the more severe the symptoms.  Initially, the geneticist did not feel it was an important test and was hesitant to put the order in.  In fact, she stated that Kaiser will not pay for such a test since he already received a diagnosis with the first test.  I started looking for companies that would provide this test and was willing to pay out of pocket, if need be.  But, in one last desperate attempt, I petitioned the geneticist and gave a lengthy rationale for why he needed the test and she suprisingly agreed to put in a requisition form for it.  Last Thursday, upon finding the results, she was very "proud" that I insisted on the microarray test as the results revealed a surprise that neither she nor I had even suspected.
Along with the duplication on chromosome 15, we discovered that Luki has another chromosomal duplication (a triplicate copy) on chromosome 17 covering a gene that encodes for neurofibromatosis.    I have dealt with a few patients in the past with this condition and I knew they had very severe skin tumors that were both painful and unsightly but never have I imagined that my son would be affected by it.  Wasn't one duplicated chromosome enough?  He has another duplicated gene?  How could this be?  I went straight to researching more about this condition and found out that  the deletion of the gene is responsible for the disease but a triplicate copy shows very mild , if any, symptoms - usually cafe au lait spots in small parts of the skin. I also learned that this condition was inherited through the paternal line and at about the time of puberty, benign tumors grow along nerve cells and deposit near the skin surface that can be uncomfortable and disfiguring for those severely affected. Other symptoms such as developmental delays seem to overlap with the symptoms he already has with IDIC 15.  I wondered if the mucocoele he was born  with in his mouth was somehow related to this new genetic condition.  He had it surgically removed when he turned one, but the doctor warned that it may come back.  He also had an abscess in his butt when he was born which went away with antibiotic creams.  He has a small cafe au lait spot on a butt cheek which we dismissed as a birth mark, but now I wonder if it is a condition related to neurofibromatosis.  The geneticist did not feel there was much to worry about since he has the duplicated gene and the more severe cases involve the deletion of the gene. But yet, I worry and fear about what to expect in the future.
  God has thrown my little family another curveball and I am somewhat confused about the meaning of it all.  I prayed for the best but was that the wrong way to pray?  It is what it is and God gives what He gives. I realize that my prayers have been dictates to God on how I wanted things to be run.  I wanted the outcomes I wanted, but of course, God's ways are not my ways and His thoughts are not my thoughts.   What I still have faith in is that God's way is the best way and His thoughts are the most loving, holy and beyond the comprehension of my little mind.  This is the faith I cling to these days because the alternative is too sad, scary and depressing to accept.  Besides, even if God is wrong, who is to say the alternative is right?
Why worry about what may happen 15 -20 years down the line when, at this moment, my little Luki is absolutely amazing in my eyes.  Every moment is joyful with him and I am so glad and happy he is with me.  Every  little milestone becomes a cause for celebration - and I mean EVERY little milestone.  I am learning to live in the present moment more and not fret about a future possibility - a hard feat for me but something I am learning to do with my son as my teacher.  And, my son is also teaching me how to change the nature of my prayers.  Instead of dictates and commands to God, now I pray only for Him to surround us with His presence, love and protection as we go through this journey - through the hard times and the easy. I pray that in the midst of the trials, He surround us with good , kind and helpful people; that he lead us to a path of Love and that our spirits would be full of joy.  I also pray that I would be one of those people for someone else experiencing a similar fate.
And with that, I sign off tonight.

February 19, 2013 - Luki's update

The geneticist, Dr. Abboy, has called us for the results of the microarray test.  We will be going in this Thursday at 10 AM.  I am hoping the duplication is minor but we will see what she says.  He also has a autism screening mid March with a developmental pediatrician.  I am not sure why they want to do this test right now.  The case manager of the Regional Center says that the result may not be accurate at this age.  The RC will do their own independant autism screening with a developmental psychologist when he turns 3.  The only reason I can find for this test now is that both RC and Kaiser are trying to get the other to foot the bill for services.  Financial reason is the motive, not the best interest for my son.

I also made an appointment with a naturopath, Dr. Karima Hirani in Culver City.  I am glad she is DAN certified and also an MD but not happy with her hefty hourly rate. She charges $400.00 an hour for the initial consultation and also we need to pay for any extra labs and supplements she orders.  I'm glad Gabriel set aside the maximal amount for his healthcare expense account this year.  We may be using all of it for Lucas this year.

I've also initiated a facebook support group for the Evergreen Church's Journey support group. I've had this strange urge to attend that church about a month before Lucas' diagnosis.  The church is right across the street from home but I never had this kind of urge to go before.  I believe it was the holy spirit guiding me to be a part of the Journey's group.  Thank God Gabriel didn't think I was crazy and humored me by going with me to church.  I think he is getting alot out of the meetings,too.  

On a more positive note, Lucas is more responsive to speech and sound.  He likes to giggle to the sound of "ribbit ribbit" and "gorilla".  He giggles when he gets to the page when the gorilla shows up in his animal book.  I put his hand over mine and tap my mouth while I make Indian sounds.  He gets a kick out of that and now, every time I hold him, he puts his hand to my mouth.  So cute...  I am finding him to be more and more cuter every day.  I can't help but smile when I think of him.  And, I am amazed that he came through me.  I am so happy he chose me to be his mother.  

Well, this is it. I've started a blog.

Well, this is it.  I've started a blog.

When I was younger, I kept a diary.  One day, my nosey brother read it and said it was the most boring thing he had ever read.  I sort of agreed.  I vowed never to journal again.  Well, here I am with a blog and this time, I don't think it will be as boring as before.  Stay tuned.....