Monday, January 16, 2012

Meet Caiti!

This is our second time taking pictures of sweet Caiti. She has a laugh that is infectious and will melt your heart. Here is Caiti's story.

Caitlyn is a 10 year old little princess. She was born with congenital cytomegalovirus (CMV). It is a very common virus that causes birth defects when the mother gets it for the first time when she is pregnant. As a result of CMV, Caiti now has Cerebral Palsy, Epilepsy, feeding issues/ tube fed, non-verbal and non-ambulatory BUT the happiest little girl in the whole wide world! Her laugh is infectious and her smile brightens the lives of all who love her. To learn more about CMV and read her story, please visit and spread the world.

Sunday, December 11, 2011

Meet Hayden & Tanner

Both boys are diagnosed with a rare neurodegenerative disease called mitochondrial disease. Hayden is 6 and loves the CARS movie, playing his guitar & anything to do with The Beatles. He is very smart & artistic. Hayden has autism, immune deficency & gi issues in addition to mitochondrial disease. Tanner is 4 & loves Toy Story. He wants to be a cowboy when he grows up & loves to laugh & giggle. He is a fun boy who loves to make others laugh & loves to play pretend play. Tanner is 100% g tube fed & also suffers from Eosiniphilic disease, immune deficency along with the mitochondrial disease. Having a child with autism has taught me patience & acceptance. It is alot of hard work to keep the boys healthy & looking good but they are SO worth it!

The Blair Family

Sunday, September 11, 2011

Meet Rhyan!

Rhyan was born 3 weeks early due to her not growing. I started to loose weight and she didn’t catch up to other babies her age so the OBGYN decided to induce me early. When Rhyan was born, she had a maturity of a 34 week old. She weighed only 4 lbs 10 ounces. 

Rhyan is now a happy 1 year old. She is still small for her age, but is catching up to her peers. She aspirates on any liquid thinner than honey thick- think snot thick, has delayed stomach emptying, and has reflux. She also sees a feeding therapist due to the fact that she has a negative association with sucking on a bottle. She has an NG tube because she cannot consume enough formula to meet her needs. Every night, she gets fed through this tube.

Rhyan is the light of our lives. Every day she is learning something new. Every day she gives us multiple reasons to smile and giggle. She is a very happy little girl. She loves to laugh and play with her dogs and toys. Rhyan is a gift from God.

Sunday, August 28, 2011

Zane and I

Here are some recent photos that my husband took of my son Zane and I. Zane is the boy behind Smiles for Zane. These pictures were taken after my husband got some new lighting equipment. As you can see we became his test subjects. I love the way the lighting and the photos turned out. We will definitely be printing these to hang on our wall.

Monday, April 25, 2011

Meet Abigail!

Abigail ELizabeth turned 2 on the 24th of March, she was born 2 months early due to her shutting my kidneys down and blocking my ureter. This caused my kidneys to block which brought on a lot of infections and 7 nephrostomy tubes having to be placed. 

We have had a rough go at life but she is such a Miracle in our lives. As of right now she is suffering from Severe Dysphagia. She is considered to have failure to thrive due to her not being able to swallow properly. She barely weighs 23lbs as of right now due to this issue. She has many specialists that she sees and they can't seem to figure out why she is getting worse. We are waiting on several extensive tests to see if they can pinpoint the issue. 


Wednesday, March 9, 2011

No Donation Button! Booo!

Where is our donation button? This is a question we have been asked and this is the answer I have at the moment.

We unfortunately had to remove our donation button off of our Smiles for Zane blog. After going round and round with Paypal, it has come to our attention that we must be stated as a Non-profit. In my mind we are but the proper paperwork must be in their possession. We will be working on getting this done but it is an expensive and lengthy process.

So for those of you who have asked where they can donate, please hang on. I am going to speak with my bank this week to figure out if there is something that can be done through them. If there is, then I will post that information as soon as it becomes available.

Tuesday, March 8, 2011

Meet Adorable Kaden!

We were overjoyed to learn that our fourth child was going to be a boy.  On September 24, 2010 at 7:46am, we welcomed to this world and to our family, Kaden William.  He weighed a healthy 9lbs 7ozs and had a head full of chestnut colored hair.  He had rolls that spilled all the way from his sweet little shoulders down to his gigantic feet.  He was pink as pink could be and had a cry that didn’t seem to end.  From the outside our baby boy looked perfect.  But beating in his little chest was heart that was broken.  We were unaware that our little boy was born with a Congenital Heart Defect (CHD).

Shortly after Kaden was born he was taken to the nursery for his first bath and such.  It was there that a nurse noticed that he had quite a loud heart murmur.  Heart murmurs are not uncommon in new born babies.  Every person’s heart has a ductus arteriosus, a shunt connecting the pulmonary artery to the aortic arch.  This is the duct that allows blood to bypass a fetus’ fluid filled lungs while in utero.  When a new born begins to take their first breaths, the duct closes and the baby’s blood begins to pass through the lungs to oxygenate the body. Sometimes, the duct doesn’t close right away and a murmur is heard as the un-oxygenated blood passed through that opening.  Almost always within a few hours after birth, that duct closes and a murmur is no longer heard.   This is what the doctors and nurses assumed was happening with Kaden.  They decided to give him a while to adjust to life outside of the womb and decided to just watch him.  The following morning, the pediatrician stopped by and became alarmed when he listened to Kaden and not only was the murmur still there; but it was loud and seemed to actually be worse than the day he was born. He decided that an echocardiogram would be necessary to ensure that our son had a healthy heart.  Kaden went for his first echo at just 24 hours old. It was at about 10:30pm the same night, when our son was about 36 hours old, that a nurse came in to tell us that a pediatric cardiologist from St. Joes would be coming to speak with us about Kaden. Immediately we knew something was wrong. Why would a specialist be driving all the way across town late on a Saturday night to talk with us about our baby?  Dr. Pophal arrived and began to explain to us what the echo had revealed.  Our son was born with a CHD called Tetralogy Of Fallot which is comprised of four anatomical abnormalities which are: VSD (ventricular septal defect), pulmonary stenosis (narrowing of the pulmonary valve), overriding aorta and right ventricular hypertrophy.  Kaden also had an ASD (atrial septal defect).  Dr. Pophal made us aware that the only “cure” for our son would be open heart surgery to repair Kaden’s heart.  We were crushed.  I remember lying in the hospital bed and looking over at Kaden as he lay in the bassinette swaddled tightly sleeping.  He was so perfect, and yet he wasn’t.   In complete shock and disbelief we asked questions that we already knew the answers to hoping that we had heard wrong. Denial set in right away, and several times Brett asked Dr. Pophal if he was sure about what he was telling us.  It was a lot to process and we were struggling to do so.  The first few days after we were given the news, were full of all kinds of emotion.  We were supposed to be bonding with our new son not watching his every move to make sure he was still breathing or that his heart was still beating.  

We were able to take Kaden home from the hospital with no monitors but we did visit the cardiologist every other week so that an echo could be performed to see how his heart was holding up.  I remember praying at each echo that they would say it was a mistake and his heart was now perfect.  I would watch closely and try to understand and analyze what I heard and saw, all the while having no real understanding of what appeared before me on the screen.  With each echo, his heart was beginning to show stress.  He was put on medication to help with the pulmonary hypertension when he was 5 weeks old.  The hope was to stave off surgery until he was 4-6 months old.

  Unfortunately when he was 7 weeks old, we were told that the surgery could not wait.  His heart was working overtime and needed to be fixed sooner than we had hoped.  So on December 1, 2010 at 9 weeks old, Kaden underwent open heart surgery to repair his broken heart.  When the time came to hand over our baby to the nurse, it took everything in me to let go of him. Brett literally had to pry him from my arms. I have never felt pain like that before. The uncertainty of whether or not our baby would survive was crippling to me.  But after nearly 4 hours we received word that the surgery was complete and he was doing well. He came off the heart lung bypass machine like a champ and by hour 5 he was done and we were able to see our son.  We had been prepared for what he would look like. We knew that there would be tubes and machines and ventilator breathing for him.  I was afraid to see him and at the same time could hardly wait.  Brett and I were walked back to his room and there he lay, a tiny baby in a giant bed, just as I had been prepared for.  Every inch of his small body, which just hours before smelled of baby lotion, was covered in lines and wires.  There were about a half dozen medications keeping him alive.  Machines beeped and alarmed as his heart rate was working to stabilize.  But somehow in all of the foreignness of the room, there was peace.  I was so glad that he was ok and that he had made it through his surgery.  Now I just needed to get him recovered.  The first 24 hours were filled with ups and downs, but overall he did well. I was finally able to hold my baby 3 days after surgery and it was like holding him for the first time all over again.  He recovered like a champ and mere 6 days after his open heart surgery, we took him home.  He continues to do well and is growing like a weed and doing all the things that an almost 6 month old baby should be doing. 

It is likely that he will undergo another open heart surgery to replace his faulty valve.  But when that is, we don’t know.  Kaden will continue to see a cardiologist for the rest of his life so that his heart can be monitored.

We feel truly blessed to be his parents and are so glad that he is part of our family.  We have learned so much from him. Every time we see that red scar running down his chest, we are reminded of how precious life is and that in a moment it could be gone. 

Brett & Allison