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 of the couch and went to sleep. No hospital visit was in order. We are grateful that Melody has not been in the hospital for sickness for three and a half years.
The Cellerciser has been an amazing tool for some of her remarkable developmental progress as it helps with strength, balance, building muscle, as well as a host of other things. The first time Melody tried the Cellerciser (about four weeks ago) she did not want to hold the bar. By the third time she could hold on by herself. The other day she held on for fifteen minutes, swinging herself away from the bar and then towards it. She was having so much fun with her physical therapist that day that she was laughing almost the entire time. Subsequent to that time she has done a few 15-20 minute sessions on it. She does not bounce herself yet, so for now we provide that for her. Since it is working at a cellular level she still benefits from the input. Her physical therapist and occupational therapist (both of whom are excellent) have been giving her input on how to bounce. They are starting with touching the back of her knee. After two days of that simple input, she started bending her knee some, which is certainly a step in the right direction for bouncing. Her physical therapist is impressed that Melody does not require much input on things before she makes a shift, and that she tends to remember the information in subsequent weeks. Amazing.
Melody’s muscles in her biceps, triceps, and shoulders are becoming quite pronounced relative to what they used to be prior to using the cellerciser. When she was first born, she was labeled “floppy”. Long gone are those days!
When a little one advances physically, often the cognitive follows. Melody has been no exception. Her cognition continues to amaze us. It appears she understands far more than she can communicate. Melody’s insightful speech therapist, Kay, was talking to me one day about something Melody had done and she referred to the song “Itsy Bitsy Spider”. Melody immediately started signing her sign language for spider, indicating that she knew exactly what we were talking about. Kay asked, “Melody, do you want me to sing ‘Itsy Bitsy Spider’ to you? Say yes or no.” Melody clearly nodded her head yes. She did that several times that day. Her ability to communicate with “yes” and “no” is definitely improving. Think of how much she could communicate with that skill alone.
Here she is trying raspberries for the first time. She was smiling and then making cute faces when she registered the tart taste. Melody is making amazing progress with her eating. She is trying several new tastes and textures these days that go beyond her typical ground-up food she has been eating since she was six months old. Although her ground-up food sustains her, she is now able to add in things like steamed carrots, raspberries, watermelon, cantaloupe, avocados, sweet potatoes, and bananas all mashed with a fork (not put through a grinder). She can now eat millet and quinoa with no mashing at all. It might be difficult to appreciate the magnificence of this. Children with Trisomy 18 typically have issues with having things in their mouth, so getting any type of food in there is usually impossible. Suffice it to say, we are deeply grateful for Kay, who is helping Melody expand her horizons.
Melody adores her brother! He elicits smiles and laughter from her in abundance. Melody’s siblings have the opportunity to participate in the Bible Bee again this year. They are doing a wonderful study of the book of Psalms.
Melody had the opportunity to take another trip to Texas this year for a family camp. This was definitely the best she has ever done traveling. She has many fans down there and thoroughly enjoyed all the attention.
We have considered getting Melody a service dog, which can be beneficial on multiple fronts. We were not sure how Melody would respond to a little fury friend. Our neighbors happen to have a dog just her size, and they have let Mia come over to play with Melody a few times. Melody seems to likes her new friend quite a bit. It was not too long ago that she would have been completely oblivious to Mia. She is substantially more engaged with her world than she used to be.
Melody went to the dentist recently. She did so well! Her favorite part was when the dentist made the chair go up. She was all smiles for that, and at one point during her visit she was even laughing. It never ceases to amaze me how charming she can be even without words.
We were definitely pleased to hear that she has no cavities or signs of decay in her mouth!
Melody is smiling and laughing these days much more readily than she ever has before. She has such a cute personality.
She is quite playful and loves to have fun just like other children. We just have to adapt her playtime to what she can do.
Melody has her own little swimming pool this summer, and she seems to be delighted with it.
“The Lord is the strength of my life.” Psalm 21:7
“But those who wait on the Lord
Shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint.” Isaiah 40:31
We can gain strength from exercising on the cellerciser, but ultimately, the Lord is our strength. It is inexplicable and utterly amazing how He exchanges our weakness for His grace and our weariness for His strength when we seek Him. We are so thankful that He sustains us and directs our steps through the ups and downs of life.
So amazing… praise Him who gives us life!
Love your updates.
The Itsy Bitsy spider is one of my favorite songs, too, Melody! You just keep it coming and continue to amaze everyone! After all, you have a great Helper and Provider.
I am inspired by this little gal, over and over. There is much more to discover of what is going on in quiet little Melody. She is growing to be mighty in Spirit and that is the very best of all. Your family is amazing. How blessed Melody is!
Melody you are a delight and a joy! Your family is amazing! Praise God for your life!
Such a joy to watch her grow!!
It is always such an encouragement to read these reports! God bless you all!
It was so great to see all of you at Lexi Grace’s birthday, especially to see Melody and her progress, it’s amazing‼️
I would LOVE to follow your sweet Melody’s story for years to come. We have our own sweet MT18 2-year old Jemima. Your testimony and Melody’s life and progress are such an inspiration to me! Sounds like you all are a Christian family as well…God is at work for sure;)
Melody’s story is such an encouragement to everyone who reads it. Melody your progress to date is amazing and is a wonderful example for each of us to emulate as we journey through life’s various challenges. Thank you for the reminder of WHO our true source of strength, grace, mercy, and wisdom is. Our love to you and your entire “team” of loving caregivers.
Melody is adorable! Thank you for the update.
Oh, my! Another joyful tear-jerker! I am so happy for Melody’s obvious growth and improvement. Thank you for sharing her journey. Her spirit encourages me. 🙂
My heart rejoices with each new entry and reading of the number of answered prayers on behalf of Melody (and her family) thank you for blessing and encouraging each one of us who have the privilege of being a part of this journey (even from afar) Much love & hugs
This is an incredible story of an incredible journey about this precious gift from God, Melody Jean, and her incredible family! What a blessing she is to all of us! God knew right where to place her. He picked the most perfect family! God bless you all for your faithfulness and obedience to HIM! Can’t wait to see you all in August! Much love from California, Auntie Pat & Uncle Don
Always inspiring to to see her grow and change and love the family participation in this process. The pictures are amazing.
“All Glory to God who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think! ” Ephesians 3:20 is my favorite and certainly pertains to this little girl!
This post has me smiling from ear to ear! It’s so wonderful how the Lord is helping Melody and using her at the same time! She is such a blessing, and her story is a joy and a blessing to me. On top of that, she is incredibly blessed to be part of a family that loves her, supports her, documents her every success, and gives glory to our God for all of it!
I love Melody’s muscles and her smile!