Happy Heart Month

Happy Heart Month (Ok, I am a couple hours early..but I had the time)!


This month is a very special month for many of us. Heart Month, Valentine's Day, and CHD Awareness Week! I know it is important to many of us to bring more attention to CHD. Not many people realize what families are going through. What the children have to go through. Olivia has had her first, second, and third staged surgeries as well as five heart catheterizations and countless procedures. She spent over 100 days in the hospital her first 16 months of life and an additional 30 since then. Our little angel has come such a long way…At 8 months old Olivia decided she no longer needed the feeding tube. At 9 months old she began to sit-up by herself. Next, at 14 months, came Olivia's very first steps. Then she mastered crawling, walking, and talking. At 18 months, Olivia could spell her own name. At age two came potty training and art work. Once she reached age three, there was no stopping her! Olivia acted like an 'old soul.' It was at this age Steven and I had to prepare Olivia for her next surgery. This brought on many questions about God and Heaven. Olivia really grew-up in 2011. This year she has really blossomed into a delightful young lady. She helps around the house and even earns an allowance. Preschool has given her quite a bit of confidence, as she is not shy what-so-ever. We also received a new diagnosis and a new prognosis this year regarding Olivia's left arm. We took her to a specialty clinic in Minnesota where they confirmed Olivia's stroke and Hemiplegic CP, due to the brain injury. They also gave us hope, with the option of Botox injections to help Olivia use her left arm functionally. This goes to show, our journey with CHD will never be over. This is something CHD families have to face all the time. Even though the ‘planned’ surgeries may not be looming over our heads, there is always something to keep us awake and our hands on the wheel in the journey.

I tell you what, there have been plenty of ups and downs over the past 4 years, but I wouldn't trade it for the world. Each time I gaze down at my beautiful daughter I find it hard to believe what she has been through. To think that was my sweet Olivia lying in that hospital bed fighting for her life tugs at my heart. I have to push those thoughts away and focus on the miracle she truly is. The pain and suffering are behind us for now…It's now that we need to stand up and spread the word. To be honest, my husband and I had never really heard of a Congenital Heart Defect before Olivia's diagnosis. Now, we're amazed at how many others there are similar to us...fighting this life long battle.















Did you know?
~About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect
~Though research is ongoing, at least 35 defects have now been identified.
~Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD
~For every dollar provided by the national medical funding arm of the American government, the National Institute of Health (NIH), only one penny is provided for pediatric research, and only a portion of that penny goes to support research on heart defects, the most common birth defect.
Also, for adults cardiovascular disease is America's No.1 killer, causing more deaths each year than cancer, diabetes and accidents, combined. And while there's a myth that heart disease affects mostly men, today it is the leading cause of death in women, killing one in three, while breast cancer kills 1 in 30 women. Symptoms for women are much different than men. Know your numbers and keep an eye on any strange symptoms you might be having.

Valentine's Day is a very special day. It is a day we celebrate our loved ones and those very dear to our hearts. It's a time for flowers, chocolates, and enjoying each others company. But it is also a day very special to our family; it is “A Day for Hearts.” We celebrate the survivors of CHD and the angels watching over us. We try to spread hope and awareness for those unfamiliar with the disease.
A DAY FOR HEARTS: CHD Awareness Day is an effort to highlight to the public the problems posed by Congenital Heart Disease. This awareness, it is hoped, will lead to an increased demand for, and attention to:
*research funding
*formation and assistance to support groups
*education of the general public
*enhanced standards of care to CHD patients worldwide

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Heart Defects Awareness Day
- Click here for details">

Praise God for giving us the opportunity to walk this life long journey. Praise God for giving us the gift to celebrate the small things in life.
A couple of weeks ago My Aunt Lisa, Olivia, Thomas, and I went to Clinton to visit my Grandma and Aunts and Uncle. Grandma lives on a farm with a huge sledding hill I used to go down as a kid. When Olivia found this out, she couldn’t wait to see it. This little girl loves to be outdoors, whether its 10 degrees or 110!

The first time down Aunt Lisa rode with Olivia…A few seconds after they took off I see another passenger hop on the back. It was my grandma’s farm dog! Every time I look at this picture I just crack up!




By the end, Olivia was ready to race down the hill on her own! I couldn’t believe how brave she was.





After that, we headed inside for some lunch and visiting.







It was so nice to see everyone. Wish we could do it more!

Things have been steady around The Spencer Household. We manage to stay pretty darn busy. Just the other day I asked my mom, “How do these people find time to make all of these delicious recipes…let alone take pictures of them and post them on their blogs and Pinterest? I barely have time to update carepages. What am I doing wrong?” She smiles and says, “I think your house is a little too clean for having two young kids and you working four days a week.” Ahh, maybe she’s right…Then again, there’s always more I could be doing or feel I should be doing. The kiddos have had a pretty nasty cough for quite awhile now. I took them back to the doctor last Tuesday. He gave them both a Zpack and tested Thomas for strep. Luckily, no strep. However, Thomas continued to run a high fever all week. He wasn’t swallowing all of his med no matter how hard I tried, so I called to see if we could get him a shot of Rosephin to kick that nasty bug to the curb. I took him back in on Friday to find out he has a double ear infection! Poor baby. Needless to say, they did the shot and we got a script for Tylenol suppositories (I know, fun, fun…but better than a sleepless, screaming baby!). He started to feel a bit better on Sunday, but still isn’t himself.


When Thomas does feel himself, he’s either mopping, sweeping, or playing with the vacuum. This kid loves to clean! Too bad when he’s old enough to show him how, he won’t be interested anymore!

On Monday Olivia had her Cardiology check-up in IA City. We were scheduled for an EKG, XRay, and ECHO. Gram was nice enough to go with us this time. I can usually handle it myself if need be, but when we’ve got all of these tests, chasing a 14 month old around and trying to pay attention to pertinent information is next to impossible! Olivia is getting to be pretty brave anymore. She charms these doctors and nurses pretty well! After the Xray we headed over to the cath lab for Olivia’s ECHO. She held pretty still through most of it. When we got towards the end she asked, “Am I doing a good job?” The lady said, “Yes, very good.” Then Olivia turned to me and asked, “Am I doing a good job, Mommy?” I told her how proud I was of her. Once we were done and it came time to take the three stickers off that monitor Olivia, she freaked. She does not like EKGs because of the umpteen stickers they rip off of you when they’re done, so this sent her anxiety sky high. She cried and cried. Dr. Law (Olivia’s Cardiologist) waked by the waiting room and saw Olivia crying. He came and sat down, asking her what was up. Olivia looked at him with her big, sad eyes and told Dr. Law she was scared of her EKG and she didn’t want one. He asked her why and she told him how much those stickers hurt. Next thing I know, Dr. Law is telling her she doesn’t have to have one this time, but she has to pinky swear to have one at the next visit….Ha! Got what she wanted once again! Ohh, Miss Livi-Pie.

Overall, they were pleased with the way things are going. Dr. Law thought Olivia’s SATs were a little low at 85%. I had been complaining about this from May-Oct. but no one seemed too concerned. I guess being a little further out from surgery they would expect the fenestration (pop-off valve they use with many Fontan’s) to start to close. This would increase her SATs. One risk of having the fenestration is stroke. However, putting Olivia through another procedure right now to close the Fenestration when she seems to be doing ok, is probably more of a risk. So, we are to keep doing what we’re doing and come back in 6 months. Whoo hoo!!!

Take care,
DON’T FORGET FEB 3RD IS WEAR RED DAY!

New Year; New Chapter

I hope all of you had a great Christmas and a wonderful New Year. The kiddos definitely enjoyed their Christmas. We had 4 of them again this year, so it was like A Christmas Marathon! I told Steve, I don’t think the kids need anything until their birthdays (which are in September and October)!

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What’s in the cage, you might ask? Olivia got a brand new hamster for Christmas from Grandma Lynch. Meet Mimi!




Yes, Thomas is CRAZY! He is constantly climbing on everything! He’s only 14mo right now; I am going to be in trouble in another year…












Last week we made the trip to St. Paul Minnesota to Gillette Children’s Hospital. As most of you know, Olivia has been in therapy since she was 6 months old. I had noticed problems with her left hand and arm when she was a baby and asked that we get her into therapy. A few years later it was confirmed Olivia had a stroke. This is what caused her arm to become locked at the elbow and her hand to look claw-like. After 3 years of therapy Olivia does have some use of her hand and it no longer has that claw-like appearance. She is able to open and close it and can bend her arm now as well. However, Olivia cannot fully straighten her arm or turn her arm/hand so her palm is up (supination). Her therapists believe this is a problem with her tone/spasticity, which was caused by the stroke. Below, it explains a little bit about this.


Before your Stroke
Your brain communicated to your muscles through your spinal cord and told your muscles when to tighten and relax to help control movement.
The muscles in your limbs had finely tuned sets of stretch receptors to tell the brain how much tension they are under. This helped the brain move the body safely to avoid injury.
After your Stroke
If your stroke damaged the part of your brain that controlled movement of muscles, your brain might not be hearing those important signals from the affected muscles. The body goes into a “safe mode” to keep the limbs protected.
When the damaged brain is no longer able to understand the usual signals from the muscle, the spinal cord might send its own impulses to the muscles in those limbs to remain contracted, or tight, so the muscles don’t get overstretched and torn.
Negative Effects of Spasticity
• Stiffness in the arms, fingers or legs.
• Painful muscle spasms.
• A series of involuntary rhythmic contractions and relaxations in a muscle or group of muscles that lead to uncontrollable movement or jerking, called clonus
• Increased muscle “tone.”
• Abnormal posture.
• Hyperexcitable reflexes


Olivia has tried several different braces over the years, with some improvement. However, her therapists believe we need to take things one step further in order to progress. They suggested Botox injections into her left arm. At first, I thought this idea was crazy. However, I did do my research. Not many doctors are familiar with using Botox in a toddler for stroke therapy, so we were referred to Gillette Children’s Hospital. Here we met with Dr. Sinner. She is a specialist in rehabilitation and botox/baclofen injections. I wasn’t sure if she would agree with the therapists or have another suggestion for us. But, we thought we might as well see what she has to say. After all, we were told Gillette is the best of the best!

After meeting with Dr. Sinner, she agreed Olivia did indeed have a stroke. She found abnormal tone in both her left arm and her left leg. The doctors were afraid she may need hand surgery before meeting with us due to the likelihood of contractures (a condition that leaves the muscles and tendons permanently shortened). However, Dr. Sinner did not find any in Olivia's hand and maybe a small amount in her elbow. She said they would classify Olivia’s brain injury as Hemiplegic Cerebral Palsy. I know, it sounds scary…one more diagnosis. But, I think of it as only a “classification.” Dr. Sinner also thought Olivia would be a good candidate for Botox injections. This is a series of injections that would be completed every 3-6 months. We aren’t sure for how long since each case is different. However, these shots are extremely expensive. We didn’t schedule her first set of injections until March so we can get everything ironed out with insurance first.

To be honest, I’m not sure how I feel about this. The last thing I want is to put Olivia through one more thing. However, I do want her to be able to use her arm functionally and have the ability to dress herself eventually as well. I know I would be kicking myself ten years down the road if we didn’t give this a shot. Because of Olivia’s tone, we have made as many advances as we can therapeutically, now we need to move on to the next step in her recovery. Below is an article on Botox injections. Please take a moment to read. I will leave you all with a few pictures of our trip to Minnesota.


Pool side room at our hotel! Olivia loved that.




Daddy and my favorite restaurant, Fogo De Chao. Olivia says, “This place is fancy!”

Botox Injections Can Help Stroke Victims, Study Finds
Repeated Botox injections over a year after a stroke can improve muscle tone and decrease pain in the arms and hands, making it easier for patients to dress themselves and do other daily chores, researchers reported Friday.
“The treatment resulted in sustained and meaningful functional improvement that makes a difference in the daily lives of stroke patients and the people who care for them,” said Dr. Allison Brashear, who presented the findings before the American Association of Physical Medicine and Rehabilitation at its annual meeting in Philadelphia.
Brashear, now head of neurology at Wake Forest University Baptist Medical Center in Winston-Salem, N.C., led the national study while she was at Indiana University School of Medicine. The study was sponsored by Allergan, the company that makes commercial Botox treatments.
The research was the first long-term evaluation of repeated treatment with botulinum toxin type A for post-stroke spasticity, a muscle tightness that inhibits movement.
Disabling spasticity affects between 17 percent and 30 percent of stroke survivors and can lead to functional limitations, discomfort and pain. Spasticity in the upper limbs can interfere with patients’ ability to dress, wash or feed themselves, among other activities.
About 700,000 people suffer a new or recurring stroke each year, and strokes are a leading cause of serious, long-term disability.
During the yearlong study, which involved 279 stroke patients with wrist, hand or elbow spasticity at 35 medical centers around the nation, all participants received up to five Botox treatments. The injections were given at the wrist, thumbs, fingers, and elbows to block overactive nerve impulses that trigger excessive muscle contraction.
After six weeks, muscle tone in the hands and arms had improved and was sustained for the duration of the study in all patients. At least half of the patients said they felt they had improved by at least one point on a four-point scale in their ability to bath or dress, their limb posture or their degree of pain in an extremity.
About 7 percent of the patients reported side effects, mainly headaches, pain in the arm or a flu-like illness, but no serious illness or complications.
Brashear noted that “if it isn’t managed effectively, post-stroke spasticity can result in very disabling complications such as contractures, a condition that leaves the muscles and tendons permanently shortened. Intervening early is vital to prevent profound disability in stroke patients and lessen the emotional and financial toll on their caregivers and the health care system.”
Typically, stroke patients suffering from spasticity take oral medications like muscle relaxers. But many of the drugs have strong side effects, like sedation, mental confusion, dizziness and muscle weakness, “all of which can seriously hinder rehabilitation after a stroke,” Brashear said.
On the Net: http://www.aapmr.org
(Contact Lee Bowman at BowmanL(at)shns.com)