Blanket of the week- Little Flower Violet

This weeks blanket of the week is Violet Madison Wehrkamp. I met Violet's Mom Allison when my husband and I first found out we were carriers of SMA. She was the first person that I talked to in  the SMA community and was so kind to me. Thank you for your friendship and support during this difficult time in my life. 

Here is Violet's story from www.littleflowerviolet.com

Violet Madison Wehrkamp passed away on August 27^th, 2010 due to respiratory failure from SMA
 Type 1.   She was 6 months 8 days and 1.5 hours old.

"Violet was born on February 18, 2010.  She was our first child and she was a perfectly healthy, beautiful little baby girl.  Of course we immediately fell in love with her!  She was our life and we were so excited and ready to teach her everything we could.  Little did we know but Violet would be the teacher and we would learn so much about ourselves, our family and love and life.  How could such a little girl be so wise?  She had an old soul and we are so blessed she chose us as parents! 

We began to notice she was not hitting her gross motor skills milestones at her 2 month well visit.  She began physical therapy through PA’s Early Intervention program and she showed promise of improvement.  She was always very sociable and loved to coo, smile and laugh.  As the weeks and months went on, we still suspected there was something wrong with her.  After some research, Muscular Dystrophy popped up on Google, along with SMA.  I was heartbroken because I knew she had one of those and I was terrified it was SMA because she fit all the symptoms.  She had severe low muscle tone, no head or neck control.  In fear, my husband and I took her to Children’s Hospital in Philadelphia on Aug 2, 2010.  The neurologist immediately suspected SMA and they took blood from her.  Meanwhile, a few days prior to her doctor’s visit she seemed to have a rattle or wheezing in her chest and she was coughing a lot and it began to affect her feeding.  Our pediatrician started nebulizer treatments.  She seemed to improve slightly the week of Aug 2.  But on Friday Aug 6, 2010, after I picked her up from daycare and she was napping she started making these horrible squeaking sounds. When I checked on her, her nose was flaring and I could see her ribs as she struggled to breath.  I took her immediately to our local ER (we live in the Poconos area in Pennsylvania), they did a chest x-ray and she was confirmed to have pneumonia and she admitted to the hospital.  At the very same time I received a call from the neurologist to have me schedule an appointment to go over her bloodwork.  I knew it was bad- if the doc wants to talk face to face instead of over the phone- it’s bad… so I called the neurologist back and begged her to tell me the results over the phone.  

She finally got in touch with me the next day Aug 7^th and confirmed our worst fears that Violet had SMA Type 1.  After our local hospital and pediatrician learned this they immediately sent us to Lehigh Valley Hospital PICU so Violet could get the very best treatment.  We spent 3 weeks at Lehigh Valley PICU.  During that time, Violet was intubated, underwent bloodwork and chest x-rays daily, was constantly under sedation medication, had a feeding tube inserted through her nose and “lived”.  The whole time she would look at me with these eyes just asking why we were there- I knew she wasn’t happy and she didn’t understand what was going on.  The worst was I was unable to even hold her and cuddle with her because of the breathing tube- but the great nurses and doctors at the PICU allowed me to sleep in the same bed with her so we could be close.  It broke my heart to see her in that condition.  In the end, they extubated her because they thought she had a chance to go home with some medical equipment because she had been improving.  The day she was extubated was her very best day since she entered the hospital- she smiled, laughed and cooed and I held her the whole day- we even got a special walk outside with the nurses, respiratory staff and resident- Violet smiled and it was like she was herself again- she totally lit up and it was like we had our little girl back!  But within 12 hours of extubation her left lung had collapsed and she was only working with half a lung on her right side.  She didn’t tolerate a BiPap machine so she had been on oxygen since the extubation, but we knew it couldn’t last forever.  We knew we would lose our little girl and that she would never come home again to see her puppy, Noodles… to take naps with Mommy on the couch… to sleep in her crib… to be rocked to sleep in her rocking chair…to talk… to grow up and be a kid and a grown woman… to have children of her own… that was all taken away. On Aug 27^th, 2010 at 1:30am Violet passed away in my arms and I never cried so hard. We miss our little girl so very much and we would’ve traded places with her in a second.  We know there is nothing we can do to change what happened, and we hurt more than anything right now.  But we will always remember Violet as our beautiful little angel with the most expressive eyes ever.  Violet loved lions, elephants, fish, cows and she would giggle every time she saw her puppy, Noodles, do his tricks.  Her personality was infectious and everyone she met was drawn to her.  She loved to coo and smile at us and she showed us more joy in the 6 months she was with us than I have ever experienced in my lifetime.  We are slowly picking ourselves up off the ground and trying to put the broken pieces of our life back together… we feel like we can never be whole again since a part of us is now gone, but we feel that Violet wanted us to spread her story and to educate others about SMA and the importance of carrier testing and our hope is that another family NEVER has to feel the heartache we feel after losing a child to such a horrible disease.  No one should ever lose a child this way… SMA sucks and it’s just not fair."

50% of each purchase is donated to FSMA in memory of Violet

Click the picture below to take you to Violet's Blankie

Pebbles Joins the Fight!

My Sweet English Bulldog Pebbles has been by my side for almost 9 years now. She is the sweetest and most loyal doggie I could ever ask for. It was only appropriate as a member of the family that she joined the fight against SMA with us! We love you Pebblina!

My IVF Chronicles

A few of my friends who are going through IVF have inspired me to share my IVF experiences with everyone. IVF is one of the most emotional experiences a women can go through. It is a constant emotional roller-coaster! IVF is not something that you can just forget about, there are constant reminders everywhere! Weather it's seeing a mother holding her child, seeing baby clothes at the mall, or family and friends having babies. You need to be strong every day and know in your heart that your time will come.
Where does my story begin....
Well, it all started when my husband and I found out we were carriers of Spinal Muscle Atrophy. We were devastated when we found out, we felt all of our dreams of having a family were shattered. We then decided that we need to figure out our options if we wanted a family. We could either try naturally or do in-vitro fertilization. We talked to many SMA families and learned how devastating this disease can be. Knowing our carrier status, my husband and I both felt that we didn't want to take that chance.
I then started researching IVF clinics around the world. Yes, we were willing to go to the ends of the earth for our child. We flew to New York City to see Dr. Rosenwaks at Cornell. Our first meeting with him went well, he didn't seem to have the best side manner but that didn't matter to me. I wasn't looking for a friend, I was looking for a doctor to get me pregnant. He assured me that I would get pregnant because of my age and no known fertility problems.
We then traveled back to New York in December of 2010 and started my IVF cycle. I was so nervous! I just got nervous staring at all the medication I had to take. I am not one to take medication all the time! I kept wondering, what is all this medication really doing to me? I took a deep breath and said, if I want to be a Mommy, this is what I gotta do! I remember being so nervous for the first shot, it took me about 15 minutes to work up the courage to inject myself. I felt such a relief once it was done and I really thought we are making a baby! My nervousness then turned into excitement!

My stimulation went very well...I quickly developed lots of follicles. Soon it was retrieval day! They retrieved 10 eggs and 8 fertilized. I was sooo excited! They then were tested for SMA and 3 were affected (had SMA) and 5 were carriers. I was so happy but was a little weirded out that none were completely SMA free. After the surgery, I had a lot of pain and could barely go to the bathroom (sorry TMI). I had a feeling that something just wasn't right.
after watching the clock for 5 days, it was time for my embryo report. All 5 SMA carriers made it to day 5 and I was going to implant 2 almost perfect embryos that day. I get to the OR and sit on the table ready to be a Mommy. The doctor does an ultrasound and tells me that I have hyper-stimulated. Which means my ovaries were giant and I had a bunch of fluid. As I sat there in the OR, tears started running down my face. I was so embarrassed that I was sitting there naked and crying in front of my doctor. I felt so vulnerable and let down. They then said we need to freeze them and transfer them next month. I was so disappointed but wanted to do the right thing for my body and future baby.
We flew back to New York City at the end of February for our frozen transfer. The whole month before, I was getting my body prepared in LA for a pregnancy. I had to take two injections a day, one in my stomach and one in my behind (which my hubby had to do and did a great job). Oh, and Estrogen patches which were so itchy! I was so excited because I got to spend my birthday in New York (March 2nd) and thought maybe my birthday wish would come true and I would have a successful transfer.
March 4th came and it was transfer day. I had to wait for the call in the morning to see if my embryos (babies) thawed okay. I was so nervous, I went to sleep at 4am that night. They called and the two they were transferring thawed and were ready to transfer. The feeling I felt was unexplainable, I really felt I was going to become a Mommy that day. Here is a picture of my embryos....

They transferred them....the feeling was overwhelming. I said to myself, I am a Mommy! I then flew home a few days later . During those first few days, I felt so much going on in my stomach. I knew they implanted. At home, I couldn't help myself and I took several HPT's. My husband thought I was losing my mind! I just had to know! Well, I got a faint positive at about 9 days after the transfer. I was soooooo excited, it really felt surreal. A day before my official blood pregnancy at the doctor, I took another HPT and noticed it looked lighter. I knew something was very wrong at that point and I just felt different. I went in for my blood pregnancy test the next day and it came back at 46. I was excited but kept thinking about the lines on the pregnancy getting lighter. I knew my baby was gone.....2 days later I went in for another blood pregnancy test and it went down to 9. Again, I got that dreaded phone call and felt once again that all our dreams have having a family were gone. I thought, what is wrong with me?
More bad news came after that, I was informed that my three remaining embryos were not good quality and they don't recommend transferring them. My heart was broken and I felt so lost. All of this time, emotions, and money was all for NOTHING!!!
I need a break.....
I started researching IVF doctors in LA and came across Dr. March. We went to see him for a consultation and immediately loved him! He was so kind and explained everything in a way we could understand, it was a nice change. He suggested that I do an HSG test since I had a previous failed IVF. An HSG is were they inject dye into your uterus and take x-ray pictures. Well, he found some abnormalities and suggested that I have surgery before I try another cycle. Again. I felt so lost and let down.
I had surgery last week and Dr. March said he has now made "my house" ready for a baby. They don't call him the "Uterus Doctor" for nothing.
My next IVF journey will be starting soon and I will be documenting my journey. IVF is not something many women talk about, especially the emotional part. I think it is important for all of us to stick together and support each other. I couldn't have gotten through this so far with out support from my husband, SMA friends and friends going through IVF.  It has been one of the hardest trials in my life. I know in my heart that it will happen one day and I will be the Mommy that I am longing to be!

Blanket of the week- Annie Girl

Annie's mother Nicole has become a dear friend of mine and it really means so much to me to have Annie girl as the blanket of the week. I would like to share Annie's incredible story with everyone from 4AnnieGirl.com ...

"Ann Marie Grimes was our second child, first daughter, born in October 2009. Annie was the result of a planned, healthy, full-term pregnancy and delivered absent of any complications. She was a healthy 7lbs., 3oz.  baby girl. She passed all infant screenings with flying colors and got a good Apgar score. We left the hospital healthy and happy.  No red flags were detected at this time. At home, Annie was doing great! We were adjusting to having a baby girl and the bows and frills were so much fun! During my time at home, we prepared for the holidays, enjoyed shopping and traveling. Annie even got to visit Walt Disney World for her first Christmas! Life truly was perfect in every sense.
During the Christmas holiday (11 weeks of age), her appetite declined. We noticed at 2 weeks of age that she snored....very loudly.  This was a bit strange to us, but we were told that "no two babies were the same" and to have no worries. At this time we also were getting several comments on how quietly she cried.  We thought this was just the difference in a boy and a girl and assumed she was going to have a "laid-back" dispostion.  We also were noticing she was using her belly to breathe.  On December 27, 2009, we saw a pulmonary specialist at Vanderbilt Childern's Hospital. They diagnoised Annie with Laryngomalacia. This was something commonly seen in their office and it was not alarming nor life threatening. The larynogomalacia could affect an infants appetite and it would cause a stridor sound, which was her snoring and weakend cry. We were releaved that it was something simple and something she would grow out of by 6 months of age. In January 2010, I returned to work after a 12 week stay at home. This was extremely hard for me to do and something kept telling me this was not the right decision. However, I thought it was just the "nervousness" of leaving her at daycare. During the 3 weeks she was at daycare, her eating continued to decline and she was not gaining weight.  Her teachers were commenting on how alert she was.  We just thought we had a very smart baby.  They also commented on her hands turning inward.  We returned to Vandy on January 26th for a check up on the laryngomalacia and told the doctor she was missing milestones.  She was lacking movement and was not holding her head up.  I described her as "infant like".   He mentioned we should see a neurologist.  We left Vandy and returned home not knowing what to expect.  The neurologist office called the next day and asked to make Annie's "muscular atrophy" appointment.  I quickly jotted this down at work, made the appointment and hung up the phone.  Instantly,  I googled the term and screamed out when I read, "death sentence".  We rushed to daycare, got Annie and went home to research more.  Not willing to wait for our February appointment, we ended up in the ER on January 28th, where the swallow study, the chest x-ray and an exam showed all signs pointing to SMA. 

After a 7 day stay in the hospital, where we discussed our care options, Annie's lung collapsed and the doctors estimated her lifespan to be only two month, we took this family picture.  Notice our little angel is in white!  We decided on palliative care and fearfully awaited the official blood work that would confirm the SMA diagnosis.  Our family and friends came to our rescue helping with meals, monetary gifts and so much love and support.  We decided to live the next 60 days to it's fullest! 
On February 13th, her 4 month birthday, we ended up at the ER with a fever and were told that the blood work did show a positive test of SMA  - Type I.   Annie was given so much love and attention.  We did everything to keep her happy and comfortable.  Once home and given this acute care, she actually starting eating much better and seemed to be stronger.  She would kick her legs some during bathtime which she loved and she continued to move her arms a little to chew on her fingers.  The unknown was absolutely terrible, but we kept praying and gave Annie our best smile.  
Father's Day 2010, Annie had a very tough day.  She did not eat as well and just seemed very unhappy.  Of course any change in her mood or decline in oz., we paniced.  Fortunately, she did much better the next week, but something was different.  Her swallowing was getting much weaker.  It seemed with each day, she ate less and coughed more.  I knew we were getting to the end.  As always, she kept giving out those big, beautiful smiles.
 At 1:00 am, Friday, August 6th, Annie woke up struggling and we feared we had lost her.  She stablized and seemed better.  We gave her a bath, which she enjoyed and read books and of course got dressed up.  She took 1 1/2 oz of formula, slept two hours and woke up very upset and lathargic.  Trying to comfort her with more formula, she could not take her bottle.  Annie had officially lost her ability to swallow.  Annie's struggle with SMA came to an end that night.  She was surrounded by her family and passed in the arms of her mom and dad.  She was 9 months and 24 days.  She would have been 10 months old in only one week.  It was a moment of great saddness, but also a moment of relief.  Her pain was gone, but our pain was felt so deep.  We will always miss "Our Annie Girl"!"


Here is a link to the blanket of the week- http://www.lullabyblankies.com/products/Annie-Girls-Minky-Blanket.html
50% of each Annie Blanket goes to 4AnnieGirl.com

Thought's on Mother's Day

Thoughts on Becoming a Mother
I will be better not because of genetics, or money or that I have read more books,
but because I have struggled for this child
I have longed and waited. I have cried and prayed.
I have endured and planned over and over again.
Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover. I will marvel at this miracle every day for the rest of my life.
I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that  I am not popping another pill, taking another shot or cry tears of a broken dream. My dream will be crying for me.
I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.
Whether I parent a child I actually give birth to or a child that God leads me to, I will not be careless with my love.
I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my own body, I have been tried by fire and hell many never face, yet given time, I stood tall.
I have prevailed.
I have succeeded.
I have won.
So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.
I listen.
And even though I cannot make it better, I can make it less lonely. I have learned the immerse power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.
I have learned to appreciate life.
Yes, one day I will be a wonderful mother

Fresh Bothers Fight SMA Pizza Night!

Come join Brandon and I for our SMA fundraiser at Fresh Brother's in Calabasas. 20% of each purchase is donated to the Gwendolyn Strong Foundation. Please come and help support the fight against this horrible disease!  If you are not able to make it or do not live in the area, please consider making a small donation by clicking on the link below. Be sure to include Fresh Brothers fundraiser or Lullaby Blankies in the "gift in honor or memory of someone" section when you check out. Thanks for all your support!

Click to donate- Donate to our fundraiser