Melody’s Debut With the Melody Jean Fan Club

Melody’s latest adventure was a trip to California to see her grandparents.  She loved the beach!  It was sweet to see how much she enjoyed playing with the sand. Sister time in the sand We had a wonderful time enjoying God’s creation of the magnificent ocean. We were able to visit with many relatives.  Melody loves her cousin Jeff! She treasured all the attention he gave her and was delighted to be his little buddy. It was a treat to spend time in Grandpa’s chair. One of the members of the Melody Jean Fan Club When Melody was first born, testing was done to see if she had Trisomy 18.  The day the results came back confirming full Trisomy 18 …

Melody’s Strength Abounds – Long Gone Are the “Floppy” Days!

Melody has had a few sicknesses over the last couple of months, which certainly has provided its challenges. Even in the midst of her trials, she has enjoyed much love and attention as well as tremendous progress developmentally.  One sickness culminated into a 911 call due to what appeared to be dropping oxygen levels.  Thankfully, it was a false alarm, as although she was quite sick, her pulse ox had an inaccurate read.  Melody did not seem to be particularly phased by all the fanfare on her behalf.  She was sitting up when the firemen arrived, she looked around at all of them, cooperated with all their testing on her, and then promptly laid her head down on the side …

Trisomy 18 Awareness Month: The Myths Dispelled

It is Trisomy 18 Awareness month. Those with Trisomy 18 have a third copy of chromosome 18. Thus on 3/18 we celebrate, and the month of March is designated as a time to learn about these precious little ones.  I hope to impart some understanding of Trisomy 18. There are innumerable myths perpetuated about these sweet children.  Ideas have consequences. In this post I will address the labels placed on these babies that can fuel life-altering outcomes. Myth #1: Children with Trisomy 18 are “incompatible with life”.  The ramifications of this label are tragic.  As Brandon, a young man who has mosaic Trisomy 18, expressed so adeptly, “You call something lethal and you continue to get lethal results.”   This …

When Melody was Born the Outlook was Grim: Guess Who just Turned Six Years Old???

When Melody was born six years ago, the prognosis we were given for her life was that it would be brief.  Since it appeared that we were not going to have the opportunity to celebrate annual birthdays with Melody we purposed to celebrate every day we had with our sweet and precious girl. Each week was a significant milestone and treasured as a gift.  It is a beautiful thing when the little fragile ones amongst us know only love.  Life is indeed precious. When Melody left the hospital as a newborn baby she was too weak for a standard car seat.  She had a car bed. The day she came home the hospice nurse rushed to our house in a …

An Exceptional Way for Little Melody to Wrap Up 2018

Melody is a reminder of how precious the gift of life is. She has made extraordinary progress this year. She is getting stronger… Melody has orthotics now, which have helped her gain strength in her legs.  The orthotics help provide the balance she needs to practice walking and standing.  The more she uses her muscles the more strength she gains.  We have been amazed at her newfound strength. …more engaged… Melody’s OT worked with her on her first Thanksgiving craft. …and full of personality! Joe was trying to read a book one day when he was in charge of Melody.  He tried to get her to look at her book, but she decided it would be more fun to look …

The Greater the Challenge the Sweeter the Victory… The Victories Have Been Sweet Indeed!

Melody’s Progress Video (Click on the link above to see Melody’s 2 minute video of her latest developments.) Brandon, a remarkable young man in Canada who has Mosaic Trisomy 18 (meaning not all his cells are affected) noted in his high school graduation speech, “Sometimes the greater the challenge, the sweeter the victory.”  In some respects that insightful statement sums up Melody’s life. When Melody was 18 months old she was assessed to have 100 apnea episodes in an hour – ten is considered severe.  Sandra Coulson, a speech therapist, helped changed all that.  Melody no longer has sleep apnea.  Her gut is now healed through the help of a natural practitioner.  That is a assuredly a sweet victory.  Her health is …

An Extraordinary Celebration for an Extraordinary Little Girl… Half a Decade and Counting!

Melody’s birthday party video recap   Melody (full Trisomy 18) turned five years old! She got a special new dress for the occasion…   and with good reason.   It is not every day a little girl celebrates her 5th birthday with 230 of her closest friends!  We celebrated Melody’s 5th and had an exceptionally sweet celebration.  We are ever so grateful for the many people who value her life.   Our wonderful friends from church helped us prepare for this grand event.   The day before the party a car pulled up in front of our house.  It was none other than Melody’s grandma and great-aunt from California!  They surprised us by joining us for this significant milestone.   …

Melody “Teaches” the Doctors, Travels to Texas, and Touches Lives

In Bev Linder’s outstanding and insightful book Un-Special Needs, she brings attention to the “normal” needs our children with disabilities have.  One of those needs is to have purpose in this life.  Bev observes, “We all need to know that there is a reason, a purpose for taking up space in this world.”  She goes on to share her conclusion after her vast experiences in the disability world, “Individuals who have difficult challenges of any sort are more, not less, equipped to make a dramatic and lasting impression on people and are therefore more, not less, qualified to impact this world in a positive way.” For the last few months Melody’s life has been rich and full and definitely not …

A Crisis, A Life-Saving Decision, and the Notoriety That Ensued

When Melody was fourteen months old, she had an incident that was life-threatening.  She was quite sick, so I brought her to the Special Care Clinic at Children’s Hospital.  The assessment was made that she needed to be admitted.  While waiting for admission, Melody went south.  She was limp, lethargic, and all color left her face.  I carried her lifeless little body down the hall to the emergency room, overcome with grief, as she appeared to be on her last day. Melody’s daddy came to the hospital, and Melody H. brought our other children out to be with us.  Our amazingly faithful pastor and his wonderful wife came to our sides for what was presumably Melody’s last day on earth. …