Nicholas's Story

Many people have been asking us questions about how Nicholas is doing and where he is in terms of SMA right now, so I thought I would share his story from the very beginning...

Nicholas was born on May 20, 2008, a seemingly healthy, beautiful bouncing baby boy. Jeff and I were thrilled to be parents for the first time. I remember our doctor immediately laying Nicholas on my chest and I took one look at him and starting crying tears of joy. I had waited my whole life for this moment...the moment I became a mother.

Jeff and I brought Nicholas home from the hospital the following morning and marveled in the newness of parenthood. We had many visitors those first few weeks and Nicholas was content to sleep, cuddle, and eat. We felt so lucky that Nicholas had such an easy-going temperament. We had heard many stories about how difficult the first couple of months would be with adjusting to feedings, no sleep, and a crying baby, but we had none of that with Nicholas. I still miss him when he is napping and just cannot wait for him to wake up!

When Nicholas was around 4 months-old I started realizing that he was not meeting the physical milestones of a typical child his age. When placed on his tummy, he would cry and complain until we turned him over to lay on his back. He also wasn't kicking his legs as vigorously as other babies and had difficulty rolling over. Lots of people told us not to worry, that babies meet milestones at their own pace, and Nicholas would do those things when he was ready. I listened to them and desperately wanted to believe them, but in my heart I knew something was just not quite right.

At Nicholas's 6 month well-child check-up, I mentioned to the pediatrician about Nicholas' lack of movement. He referred us to the Early Intervention Program and Nicholas began receiving physical therapy in January 2009 for one hour a day, one day a week with a wonderful woman named Katie. Katie told us that Nicholas had low muscle tone and that he would most likely begin to roll over, crawl, and eventually walk with regular physical therapy. She also commented that his easy-going personality was probably to blame for his contentment with being held and cuddled all the time. Relieved, Jeff and I started doing suggested exercises with Nicholas trying to strengthen his muscles and we began encouraging him daily to move on his own.

After three months of physical therapy and very little progress, Katie suggested that we take Nicholas in to see a pediatric specialist for further medical testing. I remember crying at her words because I knew my greatest fears would be confirmed: I knew in my heart something was wrong with our baby.

On March 30, 2009, I took Nicholas to Emmanuel Children's Hospital to see Dr. Shih. Dr. Shih was the most wonderful doctor I have met to date, engaging both Nicholas and I with his witty humor and gentle nature right away. Dr. Shih gave us two possible diagnoses: Tethered Cord Syndrome or Spinal Muscular Atrophy. We prayed so hard for him to have tethered cord because Dr. Shih explained that tethered cord is correctable with surgery. SMA, however, is not. That same day, Nicholas had blood taken for the SMA test. We also scheduled an MRI for two weeks later to determine if Nicholas had tethered cord.

During the next two weeks I read as much information as I could get my hands on regarding both diseases. After a few days of research it became clear to me that Nicholas could only have one. I sat down with Jeff and explained that while Dr. Shih told us it was more likely that Nicholas has tethered cord, the fact was that all of his symptoms pointed toward SMA. We both cried for quite some time and decided that at that point all we could do was pray for a different outcome.

On April 17, 2009 Dr. Shih returned from a short vacation and called to give us the news: "I am so sorry to tell you this," he said, "but Nicholas's blood test results came back positive. He does have SMA." I cannot recall the rest of that conversation because I broke down crying so hard. I think I asked the doctor what the next steps were following this diagnosis. Dr. Shih gave me the number for a doctor at Shriner's Hospital for Children and assured me that he was an expert in SMA. He offered his condolences and was genuine in his sorrow for our family. Jeff happened to be home that afternoon because he was working swing shift, so walked into the garage and gave him the news. My grief was such that I could not even stand up. Jeff held me and cried with me for what seemed like hours. All I wanted to do was to hold our son in my arms and never let him go. I got him out of his high chair and cradled him until Jeff gently pried him away for fear that my uncontrollable sobs were frightening Nicholas.

To be perfectly honest, the rest of that day is a blur. All I know is that I wanted to be as close to Nicholas as possible, even laying him in our bed to sleep between us that night. The next day I wanted to seek out as much information as possible and I felt a desperate need to get in contact with other families who had children with SMA. I felt comforted knowing that Jeff and I are not alone in this, but sad at the same time that so many other families have to go through the anguish of having their child diagnosed with a terminal illness.

Last Monday we went to Shriner's Hospital and had our first appointment with Dr. Sussman who is an orthopedic doctor. He will watch Nicholas's spine as he grows because most children with SMA will eventually get scoliosis. He will also help Nicholas with any leg/hip braces he may need in the future. Next Monday we have a physical/occupational therapy evaluation there to determine how much therapy Nicholas needs at this point. He will also continue his physical therapy with Katie through the Early Intervention Program until he turns three years-old. On May 18th he will have an appointment with Dr. Russman who is the neurologist at Shriner's and the expert I mentioned before on SMA. Dr. Russman will be able to determine if Nicholas has type I or type II SMA, although when Dr. Sussman examined him he told us he thought Nicholas is type II. We feel very fortunate to be near a hospital that offers such amazing services for our child free of charge.

Now we are trying to focus on the positive. We spend every minute of every day treasuring our time with our sweet boy. We live our lives with as much laughter and happiness as we possibly can, although, there are moments when the severity of Nicholas's disease weighs heavy on our minds. Sometimes as I watch other children run and play I feel very sad knowing that Nicholas will never be able to do the same. He will never get to experience movement that many of us take for granted. However, Nicholas is happy and relatively healthy at this point. He has a hearty appetite and loves mealtime. He can feed himself crackers, yogurt bites, and puffs and has started eating macaroni and cheese, cut-up bananas, and canned green beans.


He loves his bath time and moves his arms and legs a lot in the water. A few times a week we take him up to Gramme and Grandpa's to have baths in the huge jacuzzi tub. The weightlessness of the water allows him more mobility than being on dry land.

Nicholas also really likes to sleep. When it is naptime he goes right to sleep without a fuss because he gets so tired from working so hard to move his little body while he is awake. Even just taking deep breaths can be tiring for him. He takes two 2 to 3 hour naps per day: one in the morning and one in the afternoon. He is usually up for 3 hours between naps. He also sleeps between 10 and 12 hours at night. After his naps he wakes up much stronger. For the first hour or so he has no trouble with head control and can sometimes sit for several minutes unassisted. As it gets closer to nap time it is easy to see that he begins to lack head control and some movement. Then it's off to sleep to re-charge those muscles again.


He loves to talk: he can say "dada," "mama," "baba," and his new word is "hi." He loves to read books with mama and his new favorites are touch and feel books. He has started to have a bit of trouble holding on to his heavier toys, so the lighter and smaller toys seem to be much easier for him to hang on to. To be honest, he really loves to take his binkie out of his mouth, throw it down, reach to pick it back up, and stick it in his mouth again. He laughs and smiles all the time and truly loves his dada. He grins like crazy when Jeff gets home from work and loves to snuggle with him. In the evenings after bath time, we have started watching Wheel of Fortune together when he drinks his bedtime bottle. Jeff and I are hoping it will help him to become a strong speller and reader someday. Even though Nicholas's body will never quite work right, we feel comforted knowing that his mind will be in tact. Being able to communicate how much we love our little boy and knowing that he understands us gives us both a sense of comfort. And while Nicholas has not been meeting any of the physical milestones most kids do during their first year, he has met all of the intellectual ones.

We also have a great deal of hope that medical researchers will be able to find a treatment or cure for SMA in Nicholas's lifetime. We know that with God anything is possible and we trust completely in Him.


We realize that we have a tough road ahead of us, but truly, we feel so blessed to have such a wonderful child. Nicholas amazes us everyday with his happy attitude and constant affection. We honestly feel like the luckiest parents in the world to raise such a wonderful boy.

A Visit With Friends

On Saturday, our friends Rod and Catie came to visit us with their 15 month-old daughter, Aubree. We had such a fun day at the Oregon Zoo!
Nicholas was more interested in Jeff's ice-cream than the new baby elephant...

Isn't it cute?!

Then they all came over to our house for a yummy pizza dinner and Aubree and Nicholas loved playing together...

It was so cute to see them babbling back and forth and playing with toys...

After dinner the kiddos took a bath. Nicholas was watching Aubree splash the water and enjoyed having a friend join him for his favorite part of his day...

Rod and Catie bought Nicholas this awsome touch and feel bear book and stuffed polar bear at the Zoo gift store because Aubree loves bears. Nicholas has enjoyed reading his new book and uses the polar bear to help prop the book up for easier page turning.

Thanks Rod, Catie, and Aubree, we had a great time with you! Come visit again soon!

An Ordinary Miracle

Today one of the most peculiar things happened to me...

This morning I spent two hours volunteering at our church's garage sale to raise money for new pews. While I was there I purchased 3 items: 2 small loaves of pineapple banana bread ($3.00) and an egg roll ($1.00). I used the $4.00 cash I had in my wallet. On my way home I stopped at Kohl's to exchange some baby clothes for Nicholas and when my transaction was complete the salesgirl informed me I owed her $1.10 to cover the difference of the exchange. Knowing full well that I had spent my money at the church garage sale, I paid for the difference with my debit card. After arriving home I fed Nicholas lunch, we played for a bit and then headed out to run a few errands. One of my stops was at the bank to deposit the cash Jeff had given me yesterday when he cashed his paycheck. I pulled out all of the money from my wallet, filled out the deposit slip, and deposited the funds into our account. Several minutes later as I was walking into Hollywood Video to rent a couple of DVD's, a gentleman in a wheelchair approached me and asked if I had a dollar to spare. I told him I would look in my wallet, knowing full well that there was no money in there, just a few pennies and nickels. I opened up the pocket where I keep my cash and low and behold there was one crisp $1.00 bill. Surprised, I took it out, turned to the gentleman and said, "Well, today is your lucky day, " and handed him the dollar. He looked at me with sincere eyes and said, "Thank you very much."

I don't know what the man needed the dollar for, but that's not really the point. I know that dollar was not in my wallet several minutes before when I went to the bank because I keep my money in order of value, so the $1.00 bill would have been on the top when I pulled out the cash to deposit. I think God was trying to tell me that he is closer than I think and he can create even the smallest most insignificant miracles everyday. We just have to open our eyes and see them. I know Jesus is close to us, I know he is watching over our family-Nicholas especially. I believe in the power of prayer and that Jesus's love can create miracles. I know our son is loved beyond our capacity to understand, just as all of God's children are.

It is my hope in sharing this story with you, that you will feel the power of God's love, too.

*Photograph by Lyndsey Yeomans

A Heartfelt THANK YOU

Jeff and I just wanted to say Thank you for all of the support, kind words, and prayers you have been sending our way the last few days. We truly appreciate each and every one of you and feel so blessed to have such amazing friends and family members in our life. We know we have a tough road ahead of us, but we believe in the healing power of prayer. So, again, thank you from the bottom of our hearts.

Also, if you not had a chance to yet, could you please click on the link to the right of this post to sign a petition to get federal funding to support finding a cure for SMA. It only takes a minute of your time and is for such a worthy cause. This petition was started by a husband and wife who live in Santa Barbara, CA. They have a little girl who is seven months older than Nicholas named Gwendolyn who is also suffering from SMA. I found the link to the petition on their blog and they need 100,000 signatures. There are over 56,000 as of today and you could help bring the total to 100,000 to help all the sweet, innocent babies suffering from Spinal Muscular Atrophy.

Nicholas is 11 Months-Old Today

Morning physical therapy with Katie
A walk around the neighborhood on this beautiful 80 degree day!

Nicholas lounging in the shade while mama does some yard work

Koby and Talon stopped by for a visit this evening

Talon is so sweet to baby Nicholas

I have done these posts for the last 11 months, and today this post has so much significance to me, since we know our time is limited with our wonderful little boy. We hope to provide Nicholas as many fond memories as we can while he is here with us. We love you sweet baby!

On a another very sad note, we have decided to give away our dog, Jake. Yesterday evening Jake jumped our chain-link fence and went after our neighbor's cat. As our neighbor wrestled their cat away from our dog, he was bitten twice: once on his arm and once on his leg. He required medical attention and has his arm in a brace with a packed wound. Jeff is so very sad because he loves Jake so much. However, we did not make this decision lightly. Jake has attacked other dogs in the past and nipped our niece and the neighbor's granddaughter before. Now that he can jump our fence we are worried that other people are in danger. Jake always made Nicholas smile and was Jeff's constant companion.

We will miss you, Jake.

A Heavy Heart

It is with profound sadness and utter disbelief that I write this blog entry...

Nicholas, the light of our world and joy of our hearts, was diagnosed with Spinal Muscular Atrophy (SMA) yesterday afternoon. Dr. Shih, a pediatric specialist at Emmanuel Children's Hospital, phoned us with Nicholas's blood test results taken on March 30th and told us that Nicholas tested positive for SMA. He believes that Nicholas probably falls somewhere between Type I and Type II SMA based on his physical characteristics at this time. He has referred us to Dr. Barry Russman who is an expert pediatric neurologist on SMA. We feel very fortunate that Dr. Russman is at Shriner's Children's Hospital in Portland-only a thirty minute drive from our home. We will hopefully have an appointment to see Dr. Russman within the next couple of months.

Here are the facts of SMA:

• Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 30 people are genetic carriers.
  SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.

• SMA is an autosomal recessive genetic disease. In order for a child to be affected by SMA, both parents must be carriers of the abnormal gene and both must pass this gene on to their child. Although both parents are carriers the likelihood of a child inheriting the disorder is 25%, or 1 in 4.
  

• There are four types of SMA, SMA Type I, II, III, IV. (I am only including information on type I & II because these best describe Nicholas). The determination of the type of SMA is based upon the physical milestones achieved. It is important to note that the course of the disease may be different for each child.
  

• Type I SMA is also called Werdnig-Hoffmann Disease. The diagnosis of children with this type is usually made before 6 months of age and in the majority of cases the diagnosis is made before 3 months of age. Some mothers even note decreased movement in of the final months of their pregnancy. Usually a child with Type I is never able to lift his/her head or accomplish the normal motor skills expected early on in infancy. They generally have poor head control, and may not kick their legs as vigorously as they should, or bear weight on their legs. They do not achieve the ability to sit up unsupported. Swallowing and feeding may be difficult and are usually affected at some point, and the child may show some difficulties managing their own secretions. The tongue may show atrophy, and rippling movements or fine tremors, also called fasciculations. There is weakness of the intercostal muscles (the muscles between the ribs) that help expand the chest, and the chest is often smaller than usual. The strongest breathing muscle in an SMA patient is the diaphragm. As a result, the patient appears to breathe with their stomach muscles. The chest may appear concave (sunken in) due to the diaphragmatic (tummy) breathing. Also due to this type of breathing, the lungs may not fully develop, the cough is very weak, and it may be difficult to take deep enough breaths while sleeping to maintain normal oxygen and carbon dioxide levels.
  
• Type II: The Diagnosis of Type II SMA is almost always made before 2 years of age, with the majority of cases diagnosed by 15 months. Children with this type may sit unsupported when placed in a seated position, although they are often unable to come to a sitting position without assistance. At some point they may be able to stand. This is accomplished with the aid of assistance or bracing and/or a parapodium/standing frame. Swallowing problems are not usually characteristic of Type II, but vary from child to child. Some patients may have difficulty eating enough food by mouth to maintain their weight and grow, and a feeding tube may become necessary. Children with Type II SMA frequently have tongue fasciculations and manifest a fine tremor in the outstretched fingers. Children with Type II also have weak intercostals muscles and are diaphragmatic breathers. They have difficulty coughing and may have difficulty taking deep enough breaths while they sleep to maintain normal oxygen levels and carbon dioxide levels. Scoliosis is almost uniformly present as these children grow, resulting in need for spinal surgery or bracing at some point in their clinical course. Decreased bone density can result in an increased susceptibility to fractures.
  
  
• Patients with SMA typically lose function over time. Loss of function can occur rapidly in the context of a growth spurt or illness, or much more gradually. The explanation for this loss is unclear based on recent research. It has been observed that patients with SMA may often be very stable in terms of their functional abilities for prolonged periods of time, often years, although the almost universal tendency is for continued loss of function as they age.
  
• Raising a child with SMA should be no different than raising a child who is not affected. Do as many things as possible that are age appropriate. Many times this means making adaptations. It is very important that children with SMA are assisted in reaching their utmost potential.

I will now make it my life's mission to help raise awareness and funding to support finding a cure for this horrific disease. Please keep reading our blog for updates about Nicholas and his battle with SMA. It is our hope after reading this post that you not feel pity and sorrow for our family, but that you kiss your beautiful children and thank God for all the blessings you have been given.

*Photograph by Lyndsey Yeomans

Easter Basket

The Easter Bunny hopped over to our house today with a special basket full of goodies for Nicholas. Since he is too little to eat candy, he got some more practical items: pajamas, banana mixed berry baby food, 2 books, a travel size shampoo & body wash, and a duck sponge. This morning, after breakfast, he got dressed in his new Easter outfit that Gramme and Grandpa bought for him and spent a little bit of time looking at one of his new books before he went down for his morning nap. Later this morning we are off to mommy's side of the family for a yummy Easter brunch and then we are going to have dinner with daddy's side of the family.

Our family wishes you all a joyous Easter season!

He is risen! Alleluia!

A Boy And His New Toy

Today while I was at work for a few hours, Daddy and Nicholas took a trip to Bi-Mart. Daddy decided Nicholas was ready for a "big boy" truck and so he bought him the one you see pictured here.

Nicholas sure does love rolling his new truck on the ground. He also likes spinning those huge wheels around and around when mommy holds the truck in her hand.

Thank you, Daddy!

Farmer's Market

Setting out on our adventure of good food, cute products, and fresh produce
Gramme and Nicholas on a beautiful Saturday afternoon

Okay, you guys, I would rather have the sun in my eyes and be able to lick these things than actually wear them on my face!
The street was full of hungry people buying yummy food for lunch
Our purchases: fresh apples and pears from Hood River, OR and...

Huge delicious cookies!

It was a beautiful day to enjoy the Farmer's Market!

April Showers Bring May Flowers

It has been a wet and dreary couple of weeks, and while I know that all this rain makes the grass green and the spring flowers bloom...

I wish we could skip all the April showers and go right to the May flowers!

And where is the warm sunshine? The flowers need that just as much as the rain.

Our family has spent the last several days inside the house watching movies and cuddling by the fireplace...and dreaming of warmer days when we can head outside and play!