Summer Update 2015

The Scriptures talk about the blessing of meditating on God’s Word.  In Psalm 1 we are exhorted to delight in God’s word and meditate on it day and night.  Our family has found the best way to be consistent with mediating on God’s word is to memorize one verse a week and meditate on it by saying it multiple times a day, thinking about it, praying through it, reading commentary on it, etc.  Currently I am meditating on Psalm 16, one verse at at time.  Since God’s word is so rich it is easy to spend a week meditating upon one verse.  I recently memorized verse 7 of Psalm 16, “I will bless the Lord who has given me counsel.”  God certainly is the source of all wisdom and counsel, and He pours it out generously when we seek Him.  We have been utterly astounded at the counsel He alone can give for our sweet little Melody!  One morning I wrote out the ways that God has given us counsel on Melody, and I was truly amazed.  My heart was overflowing with joy in all that He has done.


Melody was showing off during nap today. The top number on the pulse ox is her oxygen levels – 100! That was with NO oxygen at any time during her nap. She had a cranial sacral appointment yesterday, and honestly we never know the amazing results that will ensue. Apparently her oxygen levels responded positively.

As for the counsel God has given recently, the news on Melody is too remarkable to keep to ourselves.  One amazing shift that has taken place is with her breathing.  Typically respiratory issues are the biggest vulnerability for children with Trisomy 18.  Melody has been no exception.  It wasn’t until November 2014, during Melody’s hospital visit, that we were given a CPAP for Melody to use while sleeping.  (A CPAP provides positive airway pressure to assist those with apnea.)  When we had a sleep study on her subsequent to that in February we were quite alarmed to find out that she was having 69 apnea episodes in one hour if she had no CPAP.  Yet we were relieved that she was finally getting the support she needed.

The story doesn’t end there, however.  We met with Sandra Coulson, who does orofacial myology.  This changed Melody’s life (and correspondingly ours as well).  Within one week we were seeing Melody working less to breath while sleeping.  After a couple of weeks we could observe no apnea while she was sleeping.  We have a high quality pulse ox, and the numbers for her oxygen levels astounded us.  She used to be in the 70’s while sleeping without oxygen.  Within one week of seeing Sandra her oxygen levels while sleeping were about 89. Those numbers have steadily increased since then.  Now she is typically about 93-94 without oxygen while sleeping. Frequently by morning her oxygen levels are about 96-97.   When I watch Melody sleep I find it immensely comforting to hear the quiet sound of her rhythmic non-stressed breathing.

In addition to the orofacial myology helping her breathing, Melody has changed in other remarkably positive ways as well.  For the most part, she no longer snores.  It used to be that her snoring was so loud you could hear her from a pretty good distance away. Snoring is indicative of breathing stress, so we were delighted to see that issue resolved.  Melody used to be perpetually congested even when she wasn’t sick.  That is no longer the case!  Melody used to have her little signature snort while awake.  That is resolved.  When she is teething she might drool a little more than the average teething baby, but she drools substantially less than she did previously.  All of her mouth muscles are so much stronger, and thus she can now drink from a cup! (Not a sippy cup, as we understand those are detrimental to development.)  She prefers her bottle, but she at least has the capacity to use a cup.  Sandra told us that her system tends to straighten out teeth. That is happening as well.  “I will bless the Lord who has given me (us) counsel”!

The Lord has been gracious in giving us an abundance of wisdom on Melody’s immune system.  As far as viruses go she has had only one minor cold since the beginning of December!  That is not for lack of exposure to things.  We have had sickness in our home.  Her immune system has been so strong that she just seems to fight whatever comes her way.  This turn of events in her health has been multifaceted.  Obviously, a huge factor for her immune system is that she is now getting the oxygen she needs.  When she started receiving B vitamins in a very pure form her immune system really shifted in an amazing way.  There are many other components to her healthier system.  One of which is what her chiropractors do for her.  For them, we are immensely grateful on many counts!

On the note of gratitude for Melody’s practitioners, I would be remiss if I did not mention her alternative medicine practitioner, Tom.  He has, we believe, saved Melody’s life on more than one occasion.  He has helped her with inefficiency with eating, digestive issues, as well as countless other things.  We have no words to properly express our gratitude for him.

DSC_4311Melody’s health is incredible now.  Her main issue that sets her apart is her development.  Yet even on that front, there is good news as well.  Melody is getting so much stronger and has become incredibly engaged.  We have Skype appointments every four months with her neurodevelopmentalist, Linda Kane (the one who gives us her exercises).  Linda has tried to keep us encouraged, but hasn’t really had cause to express excitement about Melody’s development, as Melody has been so slow at everything.  The last appointment was a different story altogether.  Linda was utterly amazed at the changes in Melody!  She was so happy to see that Melody was turning the pages of her books, waving, and becoming more mobile, just to mention a few.

Melody certainly moves more now.  She tends to pattern on her own when she is on her tummy.  She essentially does the motions of crawling, and she scoots somewhat when she does that.  She now also has the ability to be on all fours with a little help from us to get there.  The skill of crawling is top priority as crawling organizes the brain. It is essential for Melody’s development.  So Linda wants us to focus on that above all else.  Yet we still celebrate her little victories in other areas that indicate how strong she has become, i.e. sitting up briefly, standing with the support of a coffee table, and sometimes even taking steps when we support her!

One day Melody was on the floor of our family room.  Somehow we all managed to migrate outside.  She was left to herself, which in the past would not have bothered her.  We heard her fussing, which sent me into high alert, wanting to know what could be troubling her.  I went in and picked her up, and a big smile came across her face.  All she wanted was to be included with the family.  She is doing that more and more.  It is so good to see that she is engaged enough to know that she likes to be a part of things.

DSC_4207 - Version 2Melody talks a lot, but does not say words yet.  Let’s just say she speaks Melodese.  However, she is clearly communicating to a greater extent.  When she sees her daddy she absolutely lights up from head to toe!  She looks at him with adoring eyes and associates him with play time.  If he plays with her, the delight is written all over her.  If he stops playing, she clearly communicates in Melodese that she would like him to continue.  It is very sweet.

My favorite developmental milestone for Melody has to do with her cognitive abilities.  The prognosis for Melody’s intellectual capacity was bleak.  We have used the rapid flash method for teaching Melody, recommended by her neurodevelopmentalist.  We put information on 5×8 index cards and rapidly flash them in front of her, telling her what is on there.  For example, we put single words on a card to teach reading, we put red dots on a card to teach math, we put pictures of things or people on cards to teach her various bits of information.  We have done this for quite some time.  Melody loves doing this and has been incredibly engaged.  Yet, we have had no idea if Melody was learning anything from it since she hasn’t been able to communicate that to us.  During the car ride on a family trip I decided to ask Melody where the dog was on one of the pages of her book.  She touched it.  I asked her to point to all the animals on the subsequent pages.  She got it correct every time.  Since she was on a roll I decided to hold up two of her reading words that she is learning.  There are only words on the card and no pictures.  I asked her to point to the word, “sister”.  She did it!  I proceeded to test her on about 10 words.  She got every one of them correct!  I was in tears.  The information we have been inputting appears to be there.

Honestly I was afraid to test her again after that because I wasn’t sure if it was just a fluke thing.  So about a week later Melody’s daddy tested her on her colors.  He held up two cards and asked her to point to a specific color.  She got it right every time!  We were all so excited, and she knew it.  The look on her face was priceless.  She had a big smile and seemed about as pleased with herself as a girl could be.  My heart soared.  It tells me that Melody has the ability to learn.  Amazing.  Utterly amazing.

Melody is so lovable, so sweet, such a treasure.  One of her excellent practitioners, Nan, (doing cranial sacral work) looked at her and assessed, “How could anyone not love you?  That is a real gift (to have the capacity to draw love out of others)!  I know a lot of people in this world who don’t know what their purpose is in this life. Yours is very clear.”  That was a perceptive assessment.  Melody does tend to elicit a sweet response from people.  Our family is, of course, completely smitten with her, and we treasure each day we have with our little love.

That was a lot of good news.  Yet the best news of all is found in God’s Word.  We are so thankful that His Word is a “light unto our path”.  We are thankful for a Book that was written by over 40 different people from all walks of life, from three continents and using three languages.  It was written over a 1,000 year time span, and yet there is consistency with every writer as to the teachings and nature of God.  There are countless prophecies in Scripture that have been fulfilled.  There are over 300 fulfilled in Christ alone.  A professor of math and science chose just 8 of the prophesies and calculated the probability of that occurring in one man.  It was 1 in 10 to the 17th power.  There is certainly compelling evidence to take this book seriously and let it change our lives.  We are thankful for the God of the Bible, the God of all wisdom, who continues to pour out His counsel for a little girl who was not supposed to eat, walk, talk, be engaging, learn her colors(!), or even live.  We are thankful that He has blessed our family to be the ones who received this incredible treasure . . . Little Miss Melody.

Comments 1

  1. Loved reading this! Thank you for being a light to the world, Melody and Jennifer. You bring honor and glory to our Lord.

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