Probably TMI; but this proud mommy can't help herself ;-)

Yes, William went poop on the potty and I am proud enough to shout it out on my blog. Although he can't walk to the potty or sit himself; if he eventually associates bowel movements with the potty there is equipment to help make it a possibility for him. As of right now; he does not communicate when he needs to "go" but there are always indications I pick up on as a mother. So, I thought, why not put him on the toilet so he will have minimal skin contact and discomfort. You may think what is the point of picking him up and putting him on the toilet; but I must say he was very proud of himself. Will this work long term? It is too early to tell... We do own a bath/potty chair that will position him but it is a little too bulky for our current bathroom. (The bathroom pictured is my mothers). In a few years though we hope to have a more handicap accessible home with a larger bathroom..... then maybe we will be rid of diapers (at least while he is at home :-)) I love this picture; with the light shining behind William and I ... even though I had just worked out... so don't zoom in too close :-O My mom snapped the shot after being completely shocked at seeing me rush to put Will on the potty!

In conclusion a side note about an associated but much more pleasant topic is William's eating accomplishments. Since going off the Ketogenic diet he has made some great progress with eating different textured whole foods. Chewing still takes a good deal of energy for him and he panics when he feels a larger chunk of food in his mouth; yet I have stopped pureeing most foods except meats!!! We are still working on self feeding as well and have a long way to go. As I write this I am feeding him tiny pastas (Acini de pepe) with very soft shreds of turkey, chunks of avocado and fork smashed black beans!! Hooray for whole foods!!!

Memorial Weekend in Pictures (with a Few Updates)

Playtime with Daddy on a lovely warm and sunny Memorial day. William is using his special Childrite chair to practice sitting!!
My big boy sitting tall in his chair.
Our newly planted Garden with a pathway for the dogs (currently training them to use it ;-) because they like to run right through the flowers to our side door. The white fence is a work in progress but coming along nicely. Before our new neighbors arrival; their Realtor informed us of their "deathly fear" of dogs. We had been planning a privacy fence for some time but this was the true motivator to begin building. As it turns out the new neighbor and her four year old daughter are wonderful and actually tolerating the dogs. Over the weekend Ella played at their house for the first time; I was thrilled ;-) The woman was born in India, she moved to the United States 10 years ago, she cooks delicious smelling traditional Indian food, and has traveled extensively... which I find fascinating. For as long as I can remember I have owned a wall size world map and have always dreamed of visiting exotic lands and cultures. India is one of those places, among many, that I have yet to see.


Ella giving William a little push in his Pony gait trainer... "Go William GO"...
Modeling mommy's glasses in her new summer pajamas.
There was a frosted cupcake on the plate in front of William!; he's very happy to be eating a variety of foods again since stopping the Ketogenic diet. Unfortunately, he is once again having multiple seizures every day. Last week he had an EEG (two dozen wires glued to his head for over an hour) which was very stressful for us both and the technician. He cried and fought nearly the entire time; very difficult to watch. ( I think that will be the last one for a long while). Today we had a follow up appointment at Strong hospital with the Neurologist. Our Neurologist is a kind man and extremely intelligent but not very aggressive with treating William's seizures. He maintains an outlook that because of the severity of Will's brain malformation seizures will be a constant during his life and that it won't harm him to let the seizures happen (to some degree). I of course keep asking if the seizures can elicit more "seizure pathways" and interfere with potential development; and if so shouldn't we be proactive to gain control. He insists that the seizures will not do further damage to the brain and should not hinder development. I fear that he does not have great expectations for William's potential development based on his MRI. I do not want to limit my son's capabilities and am also very aware that seizures are uncomfortable and upsetting for my son. I can imagine they are not a pleasant experience to be having daily. Yet at the same time anti-epileptic medications can be highly sedative and have side effects; so it is a balancing act from hell. In conclusion and ending the appointment the Neurologist tells me that, " watching William have seizures daily must be very difficult so I will be as aggressive in treatment as you would like." Which means that he is willing to work with us but throwing the ball back into my court so to speak. So here we go changing medications and increasing doses again at my request... wish us luck....

Bits and Pieces from May

The twins and I love visiting Grandma and Grandpa's house; especially during hot Spring and Summer days. Grandma's gardens are looking lovely and sumptuous already in May.......
One of my favorites plants; my mothers bleeding hearts are looking much better than my own. My flower gardens are finally planted... pictures to come soon. I don't especially relish digging in the dirt but love splashes of color throughout my yard and watching the beautiful plants bloom. I planted some red tubular plants in hope that hummingbirds will visit this year.

A few months ago I pulled a muscle in my back lifting William; nothing serious but enough to make further lifting difficult for many days. At that point I decided I was a little too plumpy and out of shape. So my personal vision is to be strong and toned to feel great but also because it is simply what my lifestyle demands. William depends on me for all movements; everyday, and he is not a small kid anymore. Yet, not only are the workouts great for strength but I find them incredibly stress relieving. My parents well equipped home gym allows me the chance to workout while still watching the kids. They allow a few bins of toys to be stashed under the stairs and have a t.v equipped with netflix via the Wii near the workout area; great distractions for the twins so I can focus on running or lifting weights.

The picture above is one of the most challenging exercises (for my busted abs anyway). The goal is to hang from the ceiling with the black arm straps/slings and do crunches without swinging. Your body naturally wants to swing so it is a workout in and of itself just to keep still before drawing the legs up. Core strength is key though for lifting.

Last week Ella ended her first year of preschool with a class trip to the Seneca Park Zoo. Her favorite part of the trip was a giant log carved into a bench. In the picture above she is in a contemplative mood; watching the crowds of people trying to entice the tiger out of his cool hiding spot. I can't blame the tiger; personally I would hide too with all those people waving cameras and shouting at me......

William styling the 3 E love wear..... 3E Love is a disability awareness clothing line and marketing company founded in 2007 by siblings Annie and Stevie Hopkins and their family & friends. The mission of the company is simple; to create and market products and services that embrace living life no matter the obstacles, and by doing so, educate society and empower those with disabilities to love life (taken from their website). The wheelchair heart is their fabulous symbol shown along with the 3 E's; Embrace. Educate. Empower. Embrace diversity, Educate your community, and Empower each other. Learn more or purchase products to spread the cause at this website 3E Love Store — ABOUT 3E LOVE and like on facebook!!!

My kids and I often get quick glances or even stares while out in the community. Before my pregnancy and the twins I was just an average person in a crowd; obscure and not used to attention. Which suited me fine since I was the timid wall flower type. So it was a shock during my late 2nd and 3rd trimester of pregnancy to receive attention and even comments practically everywhere I went. When grocery shopping during my 3rd trimester strangers would let me go ahead of them in line... people would nervously ask how far I was past my due date; as if they feared I would go into labour in the middle of the store. When the kids were babies people used to stop us and exclaim, "twins, oh how cute... " and so forth. Now we mostly get stares or comments because my handsome boy is so big (he and Ella are still the same size; weight and height) and not walking or talking. More often than you would think; strangers will stop us and ask questions. Just last week at the zoo a woman asked how old William was and if he was in a special stroller. SO..... since we seem to get this attention; I love the idea of expressive tees, bags, and yes even a bumper sticker to spread the message of love and acceptance for all people regardless of varying abilities. Spread the 3 E love!!!!

Some Random pictures from the month of May and Memorial Day weekend.....

Oh how we love delicious Avocados....
Ella during her dance recital this past week!! She is the blond in pink smack in the middle of the princesses.
A modest selection of flowers Ella and I planted this weekend.
Love birds.... and finally the men in the "family".....

Until We have our boats.....

Today someone very special is on my mind; as April is her birth month. My cousin Christy was born three months before me; was my first playmate and still is my closest friend. Many of my early childhood memories iclude Christy; playing at our Grandma's "farm", camp circle C, summers spent swimming in her pool, sleepovers.... years of time spent together. Christy and her family moved to Coronado, California when we were 15. She then became my bleach blond, water polo playing, California Cousin. It was always an adventure and sometimes a retreat (after a broken engagement) going to visit her on the west coast. She was/is more outgoing then myself, a little more wild ( ;-p !), and a lot more athletic..... so we never had a dull moment in CA. Driving along the scenic coast, sunbathing on beautiful beaches, partying in L.A., locking the keys in our car in Compton (LOL), night clubs on Las Feliz blvd, camping in the mountains, concerts in the sun, my crush on the Star of India, Christy always leaving her house without shoes ;-) Losing my flip flops at a concert and leaving with a broken toe; enough said ..... so many lasting memories.
Now we are both mothers; Christy has three boys and lives in Iowa while her husband is in medical school. Since becoming mothers (within nine months of each other) we have reconnected and talk on the phone nearly every day. We have supported each other through some difficult times; holding nothing back. This kind of friendship is rare and very special; so I thank you Christy for being you..... for our friendship that is nearly 32 years in the making!!! Especially thank you for helping me to dream again after some trying times when I seemed to stop. Cheers to our dreams big and small... to retiring on our boats; docked next to each other.....in true minimalist style and with sails raised for adventures......
I can't imagine life without you; the past, present or the future.... Love to you... always my " California Cousin"

I am letting Go

The sun was shining in Rochester New York! The Beyers twins and I headed to one of our favorite "old school" playgrounds made of wood with tunnels and tire swings. Blond curls and blond pony tails blowing in the breeze and reflecting sunlight; what a beautiful sight. My children captivate me. I put William in his sepcial tomato chair in the jogging stroller and pushed him to a sunny spot. Normally playgrounds and too many children make me tense. Most do not offer much for William to do; and he is too heavy to carry around. So usually I push him in the jogger and we chase Ella yet the whole time I end up feeling stressed and guilty that he is not able to do what the handfuls of other children are doing around him. Today I let go of the guilt and the stress; do you want to know why??
I opened my eyes and saw how truly happy William was just to be in the sunshine; to hear the children laughing all around him. He was smiling and cooing and I don't think he gives a damn whether or not he is doing exactly what the other children are. It has been MY sadness and MY burden that he is not "typical".... but really it's all about quality of life. Both his quality of life and mine; life is far too short....

So I am letting go of these feelings I carry around like lead weights; like I have to be A Super Mom. Sometimes mothers of children with severe disabilities can be viewed or projected as martyrs; chosen because God gives us strentgh or because we can somehow handle these challenges. Well, for me its simply NOT true. I don't have any God given strength or visions... I push on day by day; through depression and fear. I am letting go... of all those expectations; my own and those I feel from others. I am done with them. I want my life back. To face challenges with courage yet to smile, enjoy sunshine without guilt, and to feel ALIVE.

and for my closing note....one more thing I am letting go of...

this unrealistic (for William) and godforsaken (my feelings ;-)) Ketogenic diet..... William and I will not miss it one bit

A place of much needed quiet and solitude: The Woods

So grateful to the special lady in this picture; my Grandmother!! She and my Grandfather moved to the "country" in the 60's. They purchased acres of farm land; beautiful fields and woodland. They knew how to work hard and play hard! My Grandparents built a beautiful home for their five children and a spacious barn. My Grandpa was the Master of the Hounds. I can remember the hounds all barking and riding my favorite horse; Alamo. They also planted dozens of beautiful evergreens; which I LOVE..... When I was twelve my parents built a house across the woods from them; it was magical :-) Literally " over the river and through the woods to grandmothers house we go"...... and since then; the Woods have become like home.....

February Struggles...

After my last post William and I spent three days at Strong Memorial Hospital. William needed fluids to rehydrate via IV and also some blow by oxygen. He had a chest x-ray which showed broncholitis and continued to vomit in the emergency department; so we were admitted. Although I do not like bringing William to the hospital I must say that the nurses and doctors we have worked with have been wonderful. I will not hesitate to bring William back to Strong if I think it is in his best interest. Would I rather keep him at home? of course! but I don't have oxygen, IV fluids, or nursing care available at our home.

I have to say that since being discharged we have had a very difficult several weeks. William has still been vomiting far to often, still seems congested, borderline dehydrated (according to the urine chem strips); often refuses fluids and has had some awful seizures. I am so sleep deprived that my ears ring and I have no idea if I am spelling correctly!!! William, I am sure, is feeling even worse; poor guy....

We have been working with the Ketogenic dietician weekly to fine tune this diet and try to control the seemingly worse seizures. I am prepared to continue with the diet for another couple months. We will see what changes Spring brings....

On a positive note; I am taking William to be evaluated for aquatic therapy with a physical therapist at CP Rochester on Monday! I am excited about giving him some new opportunities for growth and of course to be in the water. Lets just hope he does not have a seizure and vomit in the pool!!

William and I are also starting another round of visiting preschools for next Fall. I would really love for William to be part of a preschool program and receive services outside of the home next year. Our PT recently told us that he feels William has not made any progress in the past six months and that if I choose to keep him home in the Fall he is only recommending consult PT visits once a month!!!!!! This said when my son does not roll, sit, stand or walk..... I am a little angry....... I have had time to process this and have some thoughts to share with this PT on Monday. Not only has it been winter time when many medically fragile children struggle with health alone but William has also had a very difficult time adjusting to the Ketogenic diet. To say that he has made no progress is harsh. William is a fighter and is always making small gains.... large motor is just very difficult for him given the area of his brain malformation. He is grasping much better with his fingers and making more consistent eye contact. He smiles more despite having such a rough winter and pays more attention to books and toys.... He also seems to be gaining a little more strength in his trunk.

So keep tuned.... Let see how March goes!! Hopefully Spring is just around the corner....