Category Archives: Down Syndrome

Our Heart Story

This is a story you’ve heard, a story I’ve told many times…

The month of February is heart month, a month where we celebrate the ones we love. This year during the month of February, (and really every day) I celebrate my heart baby. February 7-14 is Congenital Heart Defect Week, and this week has special significance for me.

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Louis and I prayed for a baby for a year and half before our prayers were answered. We prayed the prayer that every parent prays…”Lord, bless the baby to be healthy, bless the delivery to go well.” Looking back I was guilty of praying nonchalantly. I was 31 years old, healthy, perfect sonograms, uneventful pregnancy, of course, I would have a healthy baby. David was born on May 4, and I instantly fell in love with our Sunshine. I was allowed to hold David for a few minutes before a nurse, who was unhappy with his lack of crying, took him to be examined more closely. I kept asking, “Is he okay? Why can’t I hold him?” His oxygen was never higher than 92%, but once they were comfortable enough with his breathing patterns they let me have my baby boy. I counted fingers and toes, and they wheeled us to a recovery room. Since David’s oxygen was low the Nursery nurses recommended he stay a few hours in the nursery for observation. A nurse brought David to me three hours later for his first feeding. She was a kind nurse who sat on my bed and told me that David was turning blue around his mouth when he cried. She assured me he was receiving great care and that the pediatrician had been called.  I couldn’t get him to eat or wake up, and I had a faint, uneasy feeling that something wasn’t right. I loved on David, sang to him, kissed and snuggled him. Those first moments are some of the sweetest – the ones you always remember.

Early the next morning a pediatrician came to my room, took my hand and told me she suspected congenital heart disease. Tears, panic, anxiety! What did that mean for David? A specialist from LeBonheur was called, and a few hours later Dr. Lee came to give us our official diagnosis – atrioventricular canal defect (AV Canal). This defect left David with only 2 chambers in his heart instead of the usual 4. God was merciful when he sent Dr. Lee. He is a gentle, kind man. An understanding man with 2 small children, a man who was so patient to answer all my question, so reassuring that David’s heart could be repaired. He held a diagram in his hand explaining the anatomy of the heart, the defect, the nature of the repair. I heard very little of the explanation, because I could think of nothing besides open heart surgery for my little boy.

There were no NICU beds available at Germantown Methodist, so David and Louis, along with the flight team, made the trip to LeBonheur Children’s Hospital. I begged to be released early, so 12 hours after delivery I was on my way to join Louis and David. I called to check in and Louis told me, “This place is amazing, and we have the best nurse. You will love her.” He was right! Nurse Sarah was the best!

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Sarah sat down with me shortly after my arrival and began to explain all the wires, tubes and medications. She handed me a stack of papers about AV Canal Defect and there on the front page – this heart defect was most common in Down Syndrome children. I walked over to David’s bed, looked at my sweet boy, and thought, “Yeah, I can see it in his eyes.”

In the days and weeks that followed we had several echoes on David’s heart.  His oxygen never went above 95% and his heart rate was always too fast. Once David was discharged my soul mission was to keep him healthy and gaining weight until he weighed 10 pounds. Ten pounds and 3 months old was our goal. On August 12, we were admitted for heart surgery. David weighed 10 pounds, 11 ounces and was 3 months old.

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Dr. Christopher Knott-Craig repaired David’s heart on August 13.

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This week I celebrate love. I celebrate my family. I celebrate David’s life. I celebrate his heart. I celebrate 6 months since surgery. I sing praises to God for all the people who stood with us, held our hands, whispered prayers for our sweet Sunshine. I thank God for modern day medicine and the individuals who took such excellent care of David. I pray for other heart warriors.

This heart warrior has forever changed my life! I celebrate him!

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Down Syndrome and the Sanctity of Life

Sanctity of Life – in religion and ethics the belief is a principle of implied protection regarding all life which is said to be sacred, holy, or of such value not to be violated. (dictionary.com)

Sanctity of Life Sunday took place this week. I’m pro-life, but I rarely think about the 1.3 million children who are aborted in a years time. Since David’s birth the statistics of abortion are more sobering. The abortion rate of Down syndrome children is shockingly high – 93% of women who receive a DS diagnosis choose to end their pregnancy. Women who choose to abort a DS child argue that it is unfair to be asked to raise a disabled child, or that is in unfair to ask a child to live a limited life.

I wish they knew! I wish they knew how incredibly beautiful all life is, and that a Down syndrome diagnosis is some of the best news you will ever receive.  Yes, you read that right. When we received David’s diagnosis I cried. I grieved for the child I had imagined for 9 months. When people would tell me of how my world would expand, how I would see the world with new eyes, how our family would experience love, and joy and blessings – I would think of how nice it was of them to tell me that, but I didn’t really believe it. I understand now, and I know they were right. Down syndrome has been an unexpected part of our lives, but I can honestly tell you that David’s life is beautiful and valued. He is perfect. He is strong. He is happy. His eyes sparkle (literally). He gives the best snuggles, kisses, and his smile lights his entire face – I LOVE it when this boy smiles. Lily has not been given a “bad” sibling, and Louis and I have not been given a “bad” son. We don’t look at David and see Down syndrome, we see our little boy – a little boy who captured our hearts from the first second of his life and who continues to bring happiness, joy, and blessings to our entire family. In his short 8 months of life God has used David to teach me many lessons, and I’m amazed of the stories I hear of how God has used David in the lives of others.

ALL LIFE IS A GIFT.

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ALL LIFE IS PRECIOUS!

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ALL LIFE IS BEAUTIFUL!

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ALL LIFE IS SACRED!

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Progress Report

David turned 8 months old on January 4. Happy, happy boy…

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We began our new year with doctor’s appointments. There is always a dread as these appointments draw closer and a sense of relief when they are over. David saw his pediatrician, and received a good report. He weighs 18 pounds, and on the Down syndrome growth chart he is 75% in his weight (no surprise there) and 25-50% in his height. His oxygen, heart rate, and blood pressure were perfect! He had his scheduled CBC and thyroid test. Both came back normal, and I was very thankful. I have said many prayers concerning both test. Children with DS have a slightly elevated risk for childhood leukemia. This fact scares me – I think about it every day. I am more fearful than I should be, and I have to constantly remind myself of God’s faithfulness to us in the past year. Both of these test will be repeated in 6 months, then once a year until he is 5. David also had a follow up appointment with Dr. Feliz (the surgeon who performed his Hirschpreungs pull through). All looked well. I felt like this poor little guy had a tough week – a finger prick that left the nurse squeezing his finger for a very long time, blood drawn from his arm, and a very painful rectal exam that left him screaming and left me thinking I was going to pass out. He will have his eyes and hearing checked in a few weeks. If you think about it please pray for his hearing test. His last test was a few months ago. One ear was perfect, but the other ear was full of fluid and non-responsive. The doctor felt like it was from the fluid, but his ears will have to be checked again.

We are pursuing a variety of nutritional supplements and foods to help support David’s growth and development. I have joined a support group who treat their children needs through both medical interventions, supplements and clean (organic) diets.  I have also found a group of families who implement the same type of therapy program. I am excited to be a part of these groups and to learn from their experience.

We are still doing therapy with David every day. We are seeing some progress, but it is slow. Some days leave me weary and near tears because I want to see more progress, but other days I am content with the progress I do see. We are still working on sitting. The average range for a child with DS to begin sitting on their own is anywhere from 7 – 15 months. David can tripod sit for longer periods of a time, and he has graduated to an exer-saucer and bumbo seat. He is rolling all around on the floor. I will find him under chairs or off the rug on the concrete floors. He is holding a bottle on his own. It’s a small bottle, but it’s progress!

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He is “talking” more. He is saying “mamama” – of course this thrills me.

And Lily…

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Well, she is busy being a great big sister and mama’s big helper. She really is alot of help around the house (she folded a basket of laundry this morning all by herself – woohoo!) About a month ago she was playing with her doll, and I heard her say, “It’s time for your therapy.” Tears instantly stung my eyes, and in my sinfulness I thought that no little girl should be familiar with that type of language. My world, Lily’s world, our everyday vocabulary is different from what I ever imagined, and I remind myself that this is not a bad thing. I pray every day that God will teach us needed lessons, bless us to grow into better individuals.

Both of these kiddos bring me so much joy!

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David’s New Trick

A few months ago I began researching different types of therapies that might assist David in learning to sit up. Sitting up is our next big milestone, and I want to do what I can to help David achieve this milestone. Children with Down syndrome have low muscle tone, so their development is delayed. The majority of a baby’s physical development comes from their core strength. Rolling over, playing with toes, sitting up, putting weight on legs, army crawling, crawling, pulling up, and walking can not be achieved until the core muscles are strong enough to support this type of movement. When I try to find therapies for David I look for the advice of other stay at home moms, not because I think they are experts on all things. Stay at home mothers are able to implement a consistent therapy program with their Down syndrome children because they are with them all day. Here is what I found and what I have been doing with David for several months.

Any time David is in a reclining position we do the same three things each time before I actually pick him up. He has to reach for me. Once his arms are all the way up I grasp his fingers and help him do a mini crunch into the sitting position. I help him hold the sitting position for a few seconds and then I pick him up. I always cheer for him, and he breaks out into the BIGGEST grin. So, over the course of months he has done hundreds of these mini crunches. He has held the same sitting position hundreds of times, but today I turned loose and…

TA-DA!! TRIPOD SITTING!

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He was able to hold this position for 10-15 seconds. I think those chubby rolls in his arms helped.

I had a difficult weekend. A weekend where I struggled with David’s physical delays.  I was reminded today that God knows. He knows my weakness. He knows my desires. He knows my heart and struggles. On this day when I was feeling discouraged – He knew, and it was no accident that David’s “trick” happened today.

Therapy

Over the weekend Louis and I took David to Jackson, Tennessee to be evaluated by a Neurodevelopmental therapist. We have talked to doctors, nurses, occupational and physical therapist, geneticist, parents and they have all told us the same thing – early intervention is the key to success.  We saw occupational and physical therapist at LeBonheur who gave us a few things we could implement at home. They encouraged lots of tummy time, no swaddling blankets, tracking with eyes, and then just encouraging normal baby interaction. I have researched and been working with David on a variety of different therapies, but really I have felt lost.

We have been praying for guidance – praying the Lord would lead us to the right therapist with the right approach. We feel as if our prayer has been answered.  The therapist we saw had a brother, Scott, with DS and two-thirds of his clients are children with DS. We have read testimonials of phenomenal results from individuals who have implemented this therapy program- exploding vocabularies, early potty training, elite gymnasts, perfect speech, easy social interaction, independent living (with parents close by). Michael Kane, the therapist, is a Christian, a husband, a father, a practical man who understands that life is busy. While he encouraged us to push towards therapy completion everyday he stressed that some is better than none and to do what we can.

David’s therapy consist of 24 intense, repetitious stimulating activities. His therapy activities cover fine and gross motor function, auditory function, language function, visual function, and tactile function. I am easily overwhelmed, and as a stay at home mother the majority of David’s therapy will fall on my shoulders. I am not complaining. I am SO thankful for my role as a full time mama. I am praying the Lord will give me a long term vision for the future, but the ability to focus on this day – this day with my daily grace. As parents, Louis and I, both want what is best for David. We want him to be as high functioning and independent as possible. We have high hopes and are encouraged, but we have our work cut out for us. If we cross your minds please pray for us.

The Happiness Study

Last year the Children’s Hospital of Boston conducted a study involving individuals who lives were affected by Down Syndrome. Here are some of the findings…

The first study evaluated parents or guardians. Out of 2,094 adults they found that 99% of parents loved their child with DS, 79% felt their lives were more positive and happy because of their child, 4% said they sometimes felt embarrassed by their child

The second study evaluated siblings. Out of 822 brothers and sister 94% expressed feeling proud of their DS sibling, 7% felt embarrassed, 4 would “trade their sibling” for another, 88% said they were better people because of their sibling with Down syndrome

The third study evaluated individuals with Down Syndrome. 99% said they were happy with their lives, 97% liked who they were, 96% liked how they look, 86% made friends easily, 4% expressed sadness over their lives

This study proves what so many have expressed to me and Louis since David’s diagnosis – that the Down syndrome experience is overwhelmingly positive. I look at these studies, and I do wonder about the small percent who are unhappy – but if we polled these same individuals and asked them about their “normal” children or siblings I’m sure the percentages would look the same or be even higher.  Go back and read the third study. Look at the high percentages – how many of us could report we are happy with our lives? or that we like the way we look? or that we like who we are?

I worry about David and him being accepted and loved, but if this study is true he will be more happy than I can imagine. What mother wouldn’t wish that for their child. I believe one reason God gave me David is to make me realize that true happiness is not found in how we look or how smart we are or how accepted by others we might be. I pray David’s life will make me happier, more positive, more fulfilled, more enlightened, and more thankful for the true gift David is.