The Truth.... Update on Last post

In my last post I wrote about William starting the Ketogenic diet for seizure control. We finally received a date for his hospitalization; December 6-10th. I debated about putting the start date off until after the Holidays but finally decided the sooner the better. Unfortunately his Holiday will not include any sweets... poor Will. No sweets and very minimal carbs but lots of love and kisses and hopefully less seizures. Hopefully more alert time as well.

As for my breasts... (I think mostly females read this blog; but if you are a male...sorry) the concern my doctor and I had over a lump turned out to be nothing major. I spent over four hours in a local breast clinic getting many mammogram pictures and a ductogram. Anyway, I have to go back for another test in a week but it's nothing too concerning. I will not go into anymore details. So as I recently told a friend; back to worrying about my children and not myself..LOL

I recently emailed some parents from the Lissencephaly loop about some of my concerns for William's development. The people I have connected with through the loop have been such a huge support to me even though I have not met any of them in person (yet). This is the part of my blog post where I am going to be bluntly honest; there are so many challenges in raising a child with severe disabilities. William has my heart.... there is no one I love more than he and Ella. He is a beautiful and sweet boy; who I love to be with. Yet most days I feel a sadness that I have to overcome. Everyday I grieve that my son is not able to roll, sit, walk, talk, eat without choking and aspirating, grasp objects, see well, laugh, or even be comfortable and at peace without seizures.

Today my sister Katie and I brought the twins to a playground; it was a beautiful Fall day. Ella found a little friend to chase around. After the boy left she came up to me nearly in tears and said, " why did he leave.. I need a boy to play with." This said by a girl who has a twin brother.... My heart aches. It F*&^ ing aches and I hate it. William should be the one running around and laughing with her. I take a deep breath and do what I can... I push William in his jogger and we chase after her, I put his tomato seat into swings and bouncy cars ... but he is getting too heavy to carry around.

That being said (judge me as you will....) I work so hard with my son and grieve that he is still at a 6 month level. Especially now that he is in the pre-school system; where he is being compared to his typical peers and expected to meet goals and objectives that are so hard for him to attain. It's so hard to see my son struggle with basic things others do so easily. I will continue to work hard EVERYDAY being his mom/therapist but at the end of the day I only want to hold him close to me... cover him with kisses and whisper, " I love you so much just as you are." And I do... but it breaks my heart.... everyday.

Autumn Love

A very tired Sheriff Woody....
The Joy of pumpkin guts...
Enjoying a nice Fall day....
William listening for Thomas's whistle...
Soft bunnies and pony rides at Bristol Garden Center

Ready for Halloween

The twins are in their spider jammies and ready for Halloween. Tomorrow we will have a small party with family followed by trick or treating. I have all sorts of fun food concoctions for the kids and some yummy treats for the adults planned. We are all anticipating a festive day!!

A quick update; I did hear from the Ketogenic dietician at Strong hospital and I am now waiting to schedule a date for our week long hospital stay. The diet is closely monitored by a trained dietician and neurologist and could decrease seizures. If the diet works well for William we plan to wean him off one of his three seizure medications. Hopefully this will increase his alert time as well as help him to sleep better at night. If you would like to know more about this diet; here is a link....

The Charlie Foundation | Helping Cure Epilepsy Through The Ketogenic Diet

I have my reservations as well as hopes. This diet is very intense; every calorie and gram has to be measured out and only certain foods can be consumed. Absolutely no carbs and mostly fats in creams and butter. Honestly the diet sounds outright disgusting. The fact that I am willing to subject my son to it speaks of my desperation to stop his daily seizing.

On a very personal note; the doctor recently confirmed that I have a lump in my breast. So I am starting my week with a mammogram at a local breast clinic. The doctor thinks it could be a simple cyst but considering that I have had it for awhile she wants to check it out. Of course I am not thrilled to be getting a mammo at 31 but better to be safe than sorry!!! Hopefully it is nothing but the whole thought of "worst care scenero" is topping off my cup of worries to overflowing.

Well, I always think better to be proactive. So November may be a busy month here in the Beyers house but I am hopeful that good things will come from being proactive. Positive changes!! In the meantime I am trying to push worries aside and celebrate a fun Holiday with my beautiful family! Happy Halloween!!!

Catch a breath...

Late Summer and early Fall have passed in a whirlwind. I can't seem to catch my breath.... and I am told by friends with older children that it only gets busier; more commitments and running around. Not to mention that at some point in the near future this mommy has to go back to work. Where, when, what; all those W's I haven't figured out yet but living off of one income these days is nearly impossible!!! So even when I am not physically running around my mind seems to be spinning. You know those nights that you head to bed with good intentions of sleeping and only toss and turn; stare at the ceiling.... stare at your husband... just stare while your mind won't shut off....

I can't even remember if I was like this before kids. The BEFORE KIDS seems blurry. I suppose I have always been restless. Yes, it has always been hard to quiet my mind and relax; whether it's worry or daydreaming.

These days I have plenty to worry about and I do try to find some things to anticipate and look forward to. Of course I look forward to each and every day with my kids. Even if the day before was a hair-raiser (like today)... with myself feeling a little under the weather (again), a punchy and very defiant typical three year old, and a half asleep when-not- seizing William love.... anyone's patience could be worn thin. I am waiting on Strong hospital to mail a stack of genetic testing forms to review before more blood draws for Will man. We have a new list of x-linked syndromes to test for; which of course may eventually lead to testing my x chromosomes. I am also waiting for a dietician at Strong to call about starting the Ketogenic diet (for seizures). William's seizures have been getting considerably worse and he is on the max dosages for all three medicines. So I am starting to look at other alternatives before adding more meds to the mix. I say "waiting" but I have actually left several messages for this dietician. She must not know what it's like to watch your child seize multiple times a day and to feel the near constant sense of urgency and helplessness that I do.

As a mom of twins; I must equally represent both ;-) Ella is doing well in her pre-school class. Initially she had a difficult time leaving me but has now made a few friends and waves goodbye like a pro. Some of you might know that I had her evaluated for speech a year or so ago. My concern was always articulation which is addressed in preschool rather than EI in some cases. I still feel pretty strongly that she could benefit from speech and think she may be getting frustrated due to her teachers not being able to understand her. Other than that she is happy, full of imagination, wonder and always on the move :-) She has struggled a bit adjusting to all of William's new therapists. Every afternoon he has one or more therapies and the providers are all new to us. So far though William seems to like and do well with all of them.

As for myself and catching a breath; I am very fortunate to have my family. My mom loves to watch the twins and this past weekend I got a much needed break. A delicious dinner out and a quiet night of sleep can make a world of difference. Especially when followed by brunch and lots of coffee at my favorite diner the New Yorker. So I would like to end this blog post on a positive note. Cheers to super Grandma's that help in times of need; give us some down time to catch our breath and regroup; to see that we are truly blessed with a beautiful family.

Adirondack Pictures 2010

My Three Main Mugs

I have so much on my mind of late. So many to do's, deadlines, registrations, and evaluations. Doctors appointments; pediatrician (to vaccinate or to not vaccinate), genetics (more blood draws), neurology (sleep study? Ketogenic diet or try a fourth seizure medicine?). So much to do, to decide, to discover and yet my thoughts dwell on people and relationships . People I love (I couldn't do this journey without you)..... people I hate... yes, a convicted sex predator was found riding his bike through a local park. SAY WHAT? A man convicted of abusing several children was let out of jail? Unbelievable. Good thing some fellow citizen watches America's Most Wanted. Anyway, I am often thinking of how I could be a better friend, a more loving wife, a better daughter, and a good mother. Life is an intricately woven (sometimes tangled) web of relationships. Which is what I live for... but today I need a break. A breath of air... a swig of coffee... a notebook... silence... alone. Just a brief slice of time where there is no expectations of me from anyone.

So today I'd rather type out a random little blurb about trusty inanimate objects that I have placed sentimental value on; silly really but true all the same. Meet my mugs... ;-p

My three trusty gals lined up (l-r).... my Grandfathers old mug for camping; it fits into the curve of my palm just right. In the center is the Kokopelli mug that feels rough and earthy; a gift from my mom when we visited Estes Park Colorado (a well traveled mug). Finally a hand-crafted mug found at an artist fair when Wayne was pursuing graduate work in Athens, Ohio. This mug has weight; surely I could knock someone out with its heftiness. Before moving back to Rochester; Wayne and I hunted around for some treasures that would always remind us of the unique college town of Athens where we spent our first two years of marriage. We found a few framed pictures of the Athens University and scenic Appalachia; the pictured mug, and a single glazed star patterned brick from a run down brick factory. The search for the prized brick incidentally ended with horrible poison ivy all over my body and eventually a steroid shot in the.... ahem.....bum... given by a very handsome male doctor. The brick now sits on our back porch and Wayne will never let me live that one down.

So now you've met my mugs and heard a random tale from my past. Tomorrow I must form the "to do" list and schedule some appointments. As for people..... I need to make my kiddos lunch; perhaps today calls for a picnic in the sunshine and some more coffee. Which mug should I choose? :-)

Where Are those Curls? and so much more.......

William looking deliciously handsome with a full head of curls....
Where are the curls now? Yes, mommy went a little overboard with the cutting... but he looks so mature with the big boy haircut. Now at 37 lbs he certainly is a big and healthy boy. William has had a few colds this summer but has been pretty healthy! Seizure control has been the largest health challenge; as I just put a call into Neurology yesterday and once again we are increasing his medications :-(
Ella and daddy triumphant after a successful potty run....
My big three year olds and I.... the twins turned 3 on August 3rd after having a wonderful party with many friends and family. We are closing the summer with another trip to the Adirondack mountains. Friends of my parents own a townhouse in Lake Placid and give us a fantastic rate.

The Beyers family will be kicking off the Fall season with Ella starting preschool two days a week and William entering the 3-5 system but receiving all home based services. Once a week William and Ella will be going to a play group together and William will hopefully be taking some water therapy classes. I am also pretty sure William will get music therapy in the home as well!! We live in such a fantastic area rich with resources for children with special needs. Which brings me to our fundraiser for a group we are part of called Flower City Down Syndrome Network (FCDSN). Every Fall the group holds an event called the Buddy Walk to raise awareness for people with Down Syndrome and to raise funds that the group relies on. Our family joined this group a few months ago and this will be our first Buddy Walk. To sponsor us and help by making a donation go to this link ;

http://www.firstgiving.com/erinbeyers

Even a small donation will not only benefit our family but many other families in the Rochester area.

Mommy is trying to kick off the Fall with some new experiences as well. I applied for a contest which is giving away scholarships for an online writing class especially for mothers. I am keeping my fingers crossed :-) I enjoy writing but would love some guidance. One year ago this September my friend Jamie and I started a support group for mom's that have children with multiple special needs and/or are medically fragile. The group just changed its name to MEMO- Meeting Extraordinary Moms Out (thanks to Carleen!!!!). As the name suggests we meet out once a month for dessert, information sharing, and support. Ten women came out last month; two of which were new! Our group will also be featured in a local free publication called Rochester area and Genesee Valley Parent for their annual September special needs issue.

So exciting!!!!

Adirondack pictures will be coming soon :-) Happy August!