Thursday, March 24, 2011

Get your purple ready!

Saturday is Purple Day!
This is from the website..Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2010, people in dozens of countries on all continents except Antarctica worldwide participated in Purple Day. With your help, Purple Day 2011 will be even bigger!

If you go to the website you can see many ways you can help.

If you chose to wear purple don't stop there, talk about it! Tell people why you are wearing purple, tell them Epilepsy affects over 50 million people worldwide or approximately 1 in 100 people. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Tell them epilepsy keeps getting research funding cut.

Look up your local epilepsy foundation and see what you can do to help. Do a fundraiser, involve your kids, co-workers, family or school. Educate yourself on what you do if you witness a seizure epilepsy.com is a great site.

There is SO much information out there!

This is last years purple day picture, my goodness how things have changed!




Emily has 12 more days of ACTH shots left. She is doing very well with the wean. We are seeing a little bit of her personality each day. She is still not sleeping well but that is not new :). She woke up yesterday at 4:30am but she was so happy and smiley. I have missed those smiles so much!
My cousin got Emily this shirt from the facebook page polkadot whimsy, isn't it cute!

It has been almost 6 weeks since Emily's last spasm, I can hardly believe it. I get scared saying that, afraid that "they" will return. We don't know if or when they will ever return but we cannot live our lives in fear of "ifs and "whens" so we are celebrating Emily.
She is an amazing little girl and I am lucky to be her mom.

Wednesday, March 16, 2011

Marry me...again?

7 years ago I married my best friend.


From the moment I met you I told everyone that I was going to marry you. They thought I was joking.
They told me "don't do it", "you don't know him well enough", "it is just lust", "it won't last".

There has NEVER been a doubt in my mind that you were the one.


It's the little things you do that show me how much you love me.
Leaving me notes around the house, letting me sleep in on the weekends, and the way you love Emily.



You love me at my worst and help me to be my best.

 


I would not want to go though what we do with anyone else.
We do not have a typical marriage, our live is not typical. We have to fight for things most couples don't. We take nothing for granted and are thankful for every minute we have.

Joe, I would marry you over and over again.
I love you!

Monday, March 14, 2011

beginning to wean

We have begun to wean ACTH. We are holding our breath, praying and crossing our fingers.
It will be a slow process, about a month.

Since being on ACTH Emily has definitely regressed in most areas. She does not open her eyes all the way, her cvi has really gotten worse,she stopped smiling and being happy in general, she does not tolerate ANYTHING, and her sleeping is still crappy.
The only things that got better are eating and seizure control. We still have not seen any seizures or spasms.

She has been doing a lot of grunting lately. We took her to the pediatrician just to make sure it is not something respiratory and it was not. They said it was seizures-HOWEVER- I can stop what she is doing and the rule of thumb is if you can stop the movement it is most likely NOT a seizure. I called her neuro and he agrees and we have an appointment on Tuesday. ACTH has so many side effect the grunting is probably just one of them. At least I am praying so.

We did see a smile two days ago! It was just one but she has had at least one per day since we began weaning.
Loving this little grin!
Please keep praying that the ACTH is working and will continue to work!

Wednesday, March 9, 2011

My Precious Kid

I am not talking about Emily, however she is precious, I am talking about the website mypreciouskid.com.

This is a quote from the site:


 My precious kid is a site that sells safety products along with many other baby/child products.
CHILD SAFETY  & BABY GEAR STORE  - Is your child safe and protected?  My Precious Kid Child Safety Products and Baby Gear protect your children and give you peace of mind. We have personally used and tested the products we carry in our store. Our child ID kit is the product that started My Precious Kid. We have products for your baby, children, adults, pets, the elderly, and children with special needs

One thing we have been looking into is medical alert bracelet for Emily. MPK has many to chose from http://www.mypreciouskid.com/products/wearable-id-products.html

We also want to get a car seat tag so that if we are in an accident EMS will be able to see that Emily has many medical issues and will be able to get appropriate treatment right away.

If Emily ever becomes mobile they have many products to help keep kids save such as harness, seat belt locks, and child locater.

Check out the website, they have more items than I can list!
You can also check them out on facebook at http://www.facebook.com/MyPreciousKid
If you follow her on facebook watch for coupon codes, she gives them out frequently!

Monday, March 7, 2011

Baby shower and acth

This past Sunday we had my sister's baby shower.  Amy and I are only 19 months apart and have been very close for most of our lives. We have had times in our lives were we went in different directions but somehow we always end up going in the same direction eventually.

Here lately me and Amy have had to depend on each other a lot when it comes to family support. Now that she is having her first child we have more in common too.

Sammy will be here in just a few weeks if not sooner so time to celebrate!!
Me, the soon-to-be-momma, and Stacy (Amy's friend)

Sisters and our nephew, Ryder.



Amy and her mother-in-law, Betty, she is going to be a great grandma!

Stacy, Amy and Stacy's mom, Cathy.

Cathy was such a help. I am so thankful she was there!

Cathy helping Amy with the gifts.

Me, aunt Shirley, and Amy

Aunt Shirley and Amy.

I am so thankful that Emily and now Sammy will have their great-aunt Shirley. I have some of the best memories of her when we were little kids. She reminds me so much of my grandma Jean. I was so very close to my grandma and I miss her more everyday. I know she would be so proud of aunt Shirley for stepping up and becoming the person me and Amy have needed.

It was such a great shower and I can't wait to meet my nephew. He is very loved already! Thank you so much to the people who came and the ones who helped make Amy's day great!

...................

Today was day 32 of ACTH. Day 23 of no spasms and 17 days with no seizures. We are so thankful for every second without those horrible things.
The side effects are beginning to creep up on us though. The swelling is still minimal and her blood pressure has been good. She is just getting very uncomfortable and miserable. There is not a lot of things that she likes right now beside eating and being held. She hates any therapy or anything physical and her muscles are getting pretty tight so stretching has not been fun. She knows that if she holds her breath she gets out of doing whatever it is.
We will begin weaning the medicine soon so please pray with us that it has worked and that we won't have to seen another seizure or spasm again.

Friday, March 4, 2011

To you, my sisters

To You, My Sisters


By Maureen K. Higgins



Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.



I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."



Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.



We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.



All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.



We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.



We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.



We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.



We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.



We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.



We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.



We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.



We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.



But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.



But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Wednesday, March 2, 2011

ACTH update again

Day 27 of ACTH and things are still good.
Her blood pressure has regulated and swelling is still pretty minimal.
The extreme fussiness was helped with the addition of zantac.

She is still not sleeping well. Some days she will sleep great and other days she will sleep just a few hours all day.
Her appetite has calmed down a little. She is still eating 100% by mouth without any supplement of pediasure. We just started giving her stage 3 baby food last week with speech therapy and she did great and so far she has not chocked or gagged on it.
Also last week in speech therapy she had her first Gerber cheese puff and a grape sucker! She loved both especially the sucker.
She was a purple mess when it was over :)
It is crazy to think something as simple as a sucker can be a great therapy tool. We are teaching her to use her tongue more so that one day she will chew her food and that will also help with forming words one day too.

We are noticing a little more eye contact lately. She does seem a little more alert. I just miss her personality so much. Can't wait for the fog of ACTH to be over.

We are still celebrating...18 days no spasms and 12 days not seizures.
Praying everyday that this will continue once she is off the ACTH injections.
Thank you Jesus!!