Philadelphia

First, thank you all for your thoughts, prayers, and encouragements concerning William and this trip ! Many of you know how apprehensive I was and how much planning it took to make it happen. So thank you so much for your support !!

Wayne, William, and I arrived home last night after our three day trip to Children's Hospital of Philadelphia. Honestly, I am having a difficult time writing any kind of reflection on the trip. Our main goal in meeting with a top Neurologist at CHOP was to get a second opinion on how to achieve seizure control. We also had Genetics at Strong send all William's records. It was a full day for William at CHOP. He had an EEG to monitor brain activity and seizures followed by a four hour appointment with Dr. Bergqvist! Overall the visit was definitely worthwhile and productive but also emotionally exhausting. The doctor was visibly surprised by the lack of white matter in the MRI of William's brain. (It was her first time viewing his MRI with us) She admitted that it was rare but she had seen an MRI just like his recently. Unfortunately the child had just passed away. This was incredibly hard to hear and didn't start the appointment off on the best note. I refrained from asking how old the child had been as Dr. B proceeded to tell us that children with William's condition usually do not live a long life and asked if we had a palliative care team set up. This was NOT a complete shock to us but still very difficult to hear from another neurologist. She explained that given William's lack of almost all white matter in the brain it is unlikely that he will progress past an infant like stage. My understanding is that the white matter in the brain transmits signals to the the rest of the body on how to move, see, etc. The doctor also feels that seizure control is not likely to be completely achieved yet gave us several ideas for new medications/ combinations to try. She encouraged us to consider the Ketogenic diet again with better reflux management and a g-tube. We expressed that so far William loves to eat and still has the ability to; so we are not ready to proceed with a g-tube . If/ when he does require a g-tube to feed we may revisit the Keto diet with her assistance. She also recommended a repeat MRI as he is now older and that we continue to pursue genetic testing. In the upcoming months she offered to share his MRI and records with both Genetics and Radiology at CHOP to get more opinions on causes for the malformation and future treatments. She may also send his information to Dr. Dobyns in Chicago; who I believe specializes in lissencephaly and other brain conditions. Meanwhile we will have another appointment with Dr. Mink (Strong Neurology) to discuss the meds she recommended and talk about a repeat MRI. I am very grateful that she is willing to help us gather more information/opinions and try to figure out what the best choices should be for our sweet William. At home we will continue to challenge him to achieve new things- regardless. It is very difficult for me to make choices about quality of life for my Will Man. Some things are obvious; he is part of a loving family that cherishes him as he is. He loves all kinds of music and being with Ella. He smiles when he hears other children and loves a bright sunny warm day. Yet there are difficult decisions. Is it better quality of life for him to be seizing multiple times daily or to be over medicated and sleepy? To be able to enjoy food by mouth while he is able or should a diet to control seizures be the first priority? It is hard to know what the best choice is... and what worked best for Will a year ago is failing now. It good to know that we have excellent doctors working with us; top minds from different Hospitals working to give William the best life possible.

As an end note: we all got some nasty cold germ that seemed to appear last night. The whole family is sick on the couch.... so I hope this post is put together somewhat well and makes sense!! :-)

My New Mantra

Ella has taken to crying in the morning and William has taken to being floppy/resistant. Not sure if this is normal "back to school after Christmas break" behavior but nevertheless it has caused some serious white knuckled driving. Their "twin take down momma" moments have given me a new Mantra... actually my first. Yep, if you saw me today in my green Honda CRV racing down Winton my lips were sure to be moving. Repeating to myself , " I am doing the best I can"... my new Mantra. The key is to straighten up the spine, sit a little taller, grit your teeth, think happy thoughts (two beautiful children who don't always cry whom I love) and repeat, " I am doing the BEST I can". ;-p

Early Monday Wayne, William, and I leave for Children's Hospital of Philadelphia in pursuit of second opinions on seizure control. The plans have been in the making for months; CHOP has had William's neurological records for a good length of time. This morning I ran around like a mad woman filling the holes in my personal records. An hour later I was alone parked at William's school with a THICK manila envelope containing hospital records, three radiology Cd's, a bag of seizure medications, and a grande Jamaican-me-crazy coffee. (And short three dollars; didn't beat the parking fee in the hospital garage. 0-30 minutes no fee... apparently I am not that fast)... ;-)

After picking up William; speaking with his nurse and teacher I was 20 minutes late picking up Ella! Repeat Mantra...

Once home the kids are happy; bellies full of pb&j and milk and content to play or nap. I pulled out the radiology cd's and dug in. It's a strange thing seeing your baby via CT scans and x-ray images. There he was tiny Will man; just one day old. The images show all his tiny and fragile bones; his tiny legs, arms and baby parts. I found myself upset remembering the day of the twins birth. Although I know William struggled at birth and needed oxygen it still hurts to think how they whisked him away. The birth was long. Ella came first and was lodged in such a way that she took many hours to push out. After William's birth I was hemorrhaging and required oxygen so all my memories are slightly hazy. I remember the general panic in the OR room and how I was jabbed in both legs with needles; something to stop the bleeding. Yet despite all the birth drama what upsets me the most when looking back was not being able to hold my son. I was not able to see William until the next day. Doctors preformed a CT scan and abdominal x-ray before reuniting him with me; poor baby.

Four years later pouring over his tiny bones, brain, and tummy on these x-ray images I am overwhelmed with love for my now not so tiny guy. After studying the MRI scans of his brain I am anything but at peace. Of course I have seen these particular images before but time or frequency does not ease the shock. Where brain tissue should be there is black (how fluid reflects on images). Only a thin ridge of tissue surrounds the fluid filled middle; with slight folds in the frontal lobes and smooth on the back. Why? all I can say is how? and why? I feel tremendous love but not peace. I wonder if I will ever find peace amid the anger and questioning? I do feel grateful though for his life and his tenacity. For his beautiful smiles and strength.

The cd's are now packed with all the other records and ready for travel. I am willing myself to put them from my mind and simply hold my son. My flesh and blood super amazing son that the images can not come close to representing. At four he still loves to snuggle and falls asleep in my lap. He is beautiful and for him I will keep searching for answers; to achieve seizure control and give him the best life possible. To know that my Mantra is a true one.

P.S

Happy New Year!! No really... I probably should have started off the new blogging year with something more cheerful. Our family is actually doing well... on good days and after 9 a.m ;-p Picture and more updates to follow soon.

Twins Turn 4!!

William working hard using core muscles to lean over the couch....
Big four year old trying new skills.... still working on lifting the head though..
Ella with her "broken leg" wearing William's brace... a popular topic of pretend play in this house given that her twin does not walk.
Ella with her backpacks ready for her second year of preschool in a month!!
Cake time!! Yes, we let the kids go a little wild with their birthday cake !! Luckily they left most of the cake for mommy and daddy ... ;-)

Mid- Summer in Pictures

Precious shared moments
Ella and our new neighbors daughter sharing cake

Adirondack Family trip; Lake placid/Keene Valley
The twins first gondola ride up White Face mountain



Cow kisses at a farm in Vermont
A creature at the Wild Center - Tupper lake Adirondacks..

William and mommy taking a scenic breather

Curl love.....

Stinker!

Mid Summer update in words to follow....

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".....