Day four- leaving 1600; Home

During the evening of day four at Strong hospital William and I were discharged. William proved to be a rock star and we were able to leave before Friday which is the typical discharge day for Ketogenic diet admissions. We had so many visitors Thursday that brought snacks, coffee, lunch, reading material ;-) and even presents for William. I can't say thank you enough to everyone who came to visit; it really was such an encouragement during a difficult time. Since coming home William has had terrible diarrhea, thrown up three meals, and still having tonic-clonic seizures; mommy has had just one full out sobbing episode. Fortunately for William we have two different ways of monitoring his health at home while on the diet via blood and urine. So I can tell if he is staying in ketosis and also staying hydrated. All day Friday I was having second thoughts about the diet. Our family views eating a variety of foods as one of life's simple pleasures and now I feel as though I am depriving William of that joy. William faces so many daily challenges yet always enjoys eating..... and now he makes faces when I feed him. Is it worth depriving him of that simple pleasure??? If the diet controls his seizures and he is alert more often... maybe it is worth it. If he is miserable; maybe not. I think for William it is a quality of life issue and I am trying to discover what William's definition of "quality of life" is versus mine and my expectations. Nevertheless; I am pushing myself to be strong and stick with the diet for at least -3-4 months unless it compromises his health. Soon I am going to write a post with pictures of helpful kitchen tools that I think are a must for the Ketogenic diet!!!

This past week two people in my family committed suicide; Wayne's brother and my uncle. I found out about my brother-in-law Tuesday night and received a phone call about my uncle on Wednesday morning. Not only is loss of life so shocking and permanent but suicide in and of itself is horrible. How awful that people feel that there is no other choice but to end their lives; whether they struggle with mental illness or not. How awful for surviving friends and family to wonder if they could have done something different, helped in some way.....

The last time I saw my brother in law was in November. My mom had the twins and Wayne, Dean and I went out for brunch together. I have a vision in my head.... Wayne and Dean in the mini van... me in dad's sports car trying to throw the stick into reverse forgetting to push the stick in and then down. I turned around and Dean was laughing at me... .. he seemed so happy; laughing and winking at me. It is unreal that he is gone. It is unreal that my Uncle is gone as well.... my thoughts are with my Aunt and her children.

My thoughts are heavy with life and loss...... could I have helped Dean more in some way?? I will never know. Wayne will never know..... we sit together in silence with this heavy weight pushing between us. Meanwhile Dean's dog Sheba is sprawled out on our family room floor with Porter..... it's been love at first sight for the dogs... they are inseparable and happy..

4-1600 day 2 & 3

First I have to say that William is doing exceptionally well these past few days in the hospital. He has been alert and even happy with grins and chattering. The eggnog shakes have been his only meals since Monday afternoon and he is handling this VERY well. I saw three tonic-clonic seizures Monday night and one this morning but none yesterday. Ella and Grandma came up to visit yesterday. Ella likes to pretend she is a doctor or nurse so she was thrilled to be visiting the hospital. Of course I always feel so thankful that she is only a visitor and can leave with Grandma to the comfort of her home. Thank goodness for Grandma; I just can't say it enough.

William and I had a few more special visitors last evening which was nice. After our friends left I called Wayne and received some very distressing news. Wayne just found out that his brother tragically passed away. We talked and finally decided that I will continue on with this keto plan and stay in the hospital until Friday. It is upsetting to be away from Wayne during this hard time but William has come so far and is almost completely initiated to the diet so neither one of us want to give that up. Wayne was at our home and on the phone with his father a lot last night so I was here with William calling many people to talk. It was hard being apart but Wayne had Ella for the night. Tonight Grandma has Ella and Wayne is coming up to be with William and I for a few hours. Please keep Wayne and his family in your thoughts. He will be driving five hours downstate to be with his other brother and father tomorrow. His mother passed away suddenly from a brain aneurism just before we were married 7 years ago. So I think its very important for Wayne to go be with his dad. Of course I am having a very difficult time with this sudden tragic loss of life as well; I was just getting to know Dean as he and wayne were working on our house. Thats really all I have the heart to write at this time. So awful....

For dinner tonight William can eat his first full keto meal!!! I will update with how that goes. Last night around 11 he threw up quite a bit so I am hoping he can keep this high fat meal down. I will update more on the meal tonight....

4-1600 Day 1....

Monday morning I woke up with great intentions to make a hearty breakfast for William and I. Scrambled eggs with pureed spinach, apple juice, and mashed bananas with cream. Starting the day off right!!.... well, not when William chokes on a piece of mashed egg and throws up the entire meal. Failed meal attempt followed by bath time. Of course William had a huge seizure in the bathtub which just reconfirmed that we are doing the right thing with this diet. Or hopefully the right thing because hopefully the diet will significantly reduce his seizures which will allow us to eliminate some of his meds. The end goal would be more alert time to grow, develop, and play.

At 12:oo noon yesterday we arrived at Strong hospital and met with the Ketogenic dietician. Kelly is a wonderful and very informed lady! For the first couple days in Strong Will is only allowed to drink specific (carb free sugar free) flavored waters and Ketogenic eggnogs for meals. The eggnog is made with egg substitute, cream, and vanilla flavoring. William drank it down with no problems. I was very concerned that he would get upset when not allowed to eat his regular meals.... he loves to eat!! So far though he has been wonderful.....such a trooper. I have been trying to keep him distracted. We took a long walk through the kids floor, down to get my favorite Jamacian-me-crazy coffee, and to the gift shop. I treated him to a bright colored and shaggy monkey toy that screams when hugged.

He had to have blood drawn last night and at 6am this morning; not the best way to wake up. The nurses here are wonderful but had to stick him several times and then dig the needle around for each blood draw. I am just about ready to go get my lady Mrs. L from our regular lab on Monroe Ave and insist that she do the dirty work. She never has to stick him more than once....she has skill; especially since William's veins are so tiny.

So after being stuck with needles at 6 am Will and I snuggled up and he fell right back to sleep. Mommy on the other hand can't sleep well with screaming babies in the background and bright lights. So, I am up jonesing for my coffee and Will is sound asleep. I plan to let him sleep as long as possible.

want to know more about the Ketogenic diet?? Follow this link...

The Charlie Foundation | Helping Cure Epilepsy Through The Ketogenic Diet

November mix

Wayne and I ready for a night out...

All things that sparkle and shine for visual play....





Our newest family member; Porter ....
Scooter and light box time combined...

Ella climbed into Will's crib to check on him...
Meditation Ella style..."ooommm"

Thankful

Time to make gingerbread cookies; a Thanksgiving tradition
This child's apron was made by my Grandma; very special indeed

The "oh so yummy" ingredients for Pumpkin pies



On a hike.... my dad and Grandma in the background.

My mom was (and still is) amazing at making Holiday times special and fun when I was growing up with my three younger sisters. We made crafts, baked, decorated, and had so many fun times as a family. I remember every Thanksgiving she would give us a sheet of paper and a pencil and tell us to write down everything we were thankful for. Of course we used to grumble but now looking back I see a huge significance in her having us do that task year after year. I have had SO much to be thankful for in my life. Don't get me wrong; I love to eat and savor the rich flavors of a Thanksgiving feast shared with family. Yet I also think it's important to reflect on the year and how fortunate I really am in so many ways. I hope to pass the "thankful list" tradition on to my children.

For some quick updates; the twins, Wayne and I will be visiting an animal rescue center this weekend and adopting a new member to our family. Wayne's brother was in the hospital a few weeks ago and we took care of his dog Sheba. Long story short; we really miss having a four legged critter in our home. The owner of Joyful Rescues has been wonderful and is working with us to pick out the right dog for our family. Wayne has always wanted a dog and I can't even express how excited he is!!! Finally for his 35th Christmas he is getting the pet he always wanted :-)

Monday morning I returned to the Elizabeth Wende Breast clinic for some further duct testing and imaging. It was an interesting experience sitting in a waiting room clad in a tie front hospital gown. Of course the gown opens at just the right angle to expose my long chest scar. I can't help but to notice women staring like, " what the hell have you been through here".... of course my scar was for my heart and my breasts are unscarred..... at least for the moment. All the imaging showed the original papilloma and several more further into the ducts. Most likely these are benign inter-ductal papilloma's but since there are so many and apparently I am younger than the typical age range for these...my doctor wants them to be removed and tested. The chances are low; but I can't help but to worry. I asked if they could do the surgery at the clinic but since several incisions will most likely be made; they referred me to another surgeon. I feel so fortunate and thankful for my good health so far and hopefully this will be a benign condition.

So as we draw closer to Thanksgiving I am counting my blessings even when jumping over some minor hurdles. Tomorrow will be spent with my amazing family.... good food, fellowship, and good health... I couldn't ask for more. I am thankful.

A horse ride and a Furry Visitor

What a week its been for the Beyers family. We have been battling colds/coughs on and off but are still having quite the eventful time. This weekend William had his first horse ride thanks to Flower City Down Syndrome Network and Never Say Never Stables in Webster. I rode with William on a huge and beautiful horse. William was annoyed with the helmet that was falling into his face but very attentive and alert. After the ride he was awake until 10 at night!!! He was so alert! Amazing; I think I will look into riding more often with him. My little cowgirl Ella also enjoyed a few rides.

In addition to our adventure with horses we also have a furry visitor this week. Wayne's brother is in the hospital so we have temporarily adopted his puppy Sheba. She is having a wonderful time at our house. William loves to pet her and Ella has been playing fetch with her non-stop. Wheww this dog has energy! My cat is understandably terrified and slept with me all night long!! We are keeping the two separated... :-)

Wow, what a week its been!!

This hallway is our kitchen including the tiny eating area; it's looking a little more crowded now....
Ella showing off her belly to her new friend...
Someone is a little camera shy.... but thinks mommy needs to give her more food ;-)

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.

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