Reflections on Feeding

When I look at my chubby little boy who tips the scales at a whopping 29 pounds, I am brought to my knees as I thank God for the work He has done in Wesley's body and the wisdom He has given to us as parents and to Wesley's doctors over the past two years.

How can my hefty little boy be the same boy who was failing to thrive for the first month of his life?  How can my Wesley who guzzles down his entire drink in less than a minute be the same kid whose suck was so weak he couldn't even nurse and it took him 40 minutes to drink two ounces from a bottle?  Can it really be that my little boy whose severe reflux caused him spit up so much of what he ate for the first year of his life is now keeping EVERYTHING down?  God has truly worked a miracle in Wesley's life.

Reflecting back on the first six months of Wesley's life brings tears to my eyes as I remember how scary those days were.  I remember begging God for wisdom to know how to care for my baby.

Wesley never lost weight because of his difficulty eating and his spitting/throwing up, although I have no idea why.  I remember that he would regularly spit-up up to 20 times between meals.  His clothes, burp cloths and blankets would always be soaked.  After just one spit up, his bib would be completely soaked through, so bibs were worthless.  I remember I always held him facing out so that when he spit up it would splat on the floor rather than covering me.  He also had blood in his stool, which was confirmation to us that something was wrong. He fought eating - screaming and flailing and turning his head as we would hold him in a sitting position against us to keep him upright and do our best to shove a bottle in his mouth. (Since he was never able to nurse, we had to feed him via bottle.  Although, bottle feeding did give us the ability to feed him upright, so for that I am grateful.)

While I am very grateful for the medical profession, and Wesley has benefited significantly from many surgeries and procedures, I also learned through trial and error that the medical profession doesn't know everything, and they don't always get things right.  I found very quickly with Wesley that many doctors are ignorant when it comes to how food affects GI issues.  I even received erroneous information from several GI doctors as we pursued care for Wesley.

So, after much prayer and consideration, I decided to go on an elimination diet when Wesley was 5 months old, eliminating all allergens from my diet along with many other foods that can be difficult to digest.  It was a drastic and very difficult step to take, but Mike and I felt that it was our best option if we were to ever identify what was bothering Wesley and how we could best help him.  My doctors were skeptical, as they had never heard of it before and felt that it was unnecessary, but nothing they were doing was seeming to help.  Since several of my friends had seen radical changes in their kids when they followed this diet, I decided to do it anyway.  After a week or so, the blood in Wesley's stool disappeared, and after 4-5 weeks I began to see a decrease in his spit up.  It was not a huge decrease, but it was there nonetheless.  Over the course of 6 months, I slowly added back in foods until it seemed that dairy was the main culprit for Wesley's reflux.

During this time we also had an upper GI scope done on Wesley to confirm that he had no physical deformities in his esophagus that might be causing his reflux.  They found none, which was both a relief that nothing huge was wrong and a disappointment that doctors still had no idea what was wrong (other than beginning to suspect an allergy/intolerance to protein).

When Wesley was 11 months old, after consulting Wesley's GI doctor and several nutritionists, I decided to wean Wesley to soy formula, because the protein in breast milk is similar to the protein in cow's milk, and Wesley's GI told me that it seemed that Wesley was allergic to the protein.  Sure enough, within a week of weaning him, his spit up decreased substantially.  He still spit up a lot, but not massive quantities all day long.  I still wonder if a weak esophageal sphincter had a lot to do with his continued spit up.  Then when Wesley was 18 months old or so, I switched from soy milk to a mix of soy and rice milk. Once he was getting more rice and less soy, his spit up almost disappeared (because the protein in soy milk is also similar to that of dairy).  Of course, this left us with concerns about fat intake until we were introduced to coconut milk a few months ago.  It has been a lifesaver!  Wesley now gets the fat he needs and very rarely spits up as long as he is on Prevacid.

As I look at how God has transformed my little boy, I am reminded of Colossians 1:16-18, which says that God created all things and in Him all things hold together.  That includes Wesley.  Even when it felt like I had no idea what to do and everything was spiraling downward with no answers, God was faithful uphold Wesley, the precious boy he had created.

And as Mike and I begged God for wisdom and clung to the promise in James 1 that God generously gives wisdom to those who lack it and ask Him in faith, God was faithful to answer His promise.  God DID give us the wisdom that we needed to care for our son.  And He did this both because He loves us and because He loves Wesley even more than we do.

Reflecting on the changes in Wesley's body and gut over the past two years, it is clear to me that the work God has done in him is nothing short of miraculous.  I have been reminded time and time again over the past two years that I am not in control of Wesley's life.  There is nothing that I can do to hold his life together.  But God, in his lovingkindness and mercy, has not only upheld Wesley's life, but laid His hand of healing on Wesley's gut, enabling him to thrive and grow strong.

"Bless the Lord, O my soul, and all that is within me, bless his holy name!  Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy, who satisfies you with good so that your youth is renewed like the eagle's." Psalm 103:1-5

Accomplishments & Successes

Since baby books are not made for children like Wesley, I often find myself struggling as I try to update his.  As a result, this post is my way of documenting Wesley's more recent accomplishments and successes, since my memory is proving to be less and less reliable these days.

Wesley playing with his OT

Expressive Speech:

• Wesley currently uses the following signs:  please/help (he signs "please" for help as well), open, all done, play, ball
• The following words are often in his vocabulary (words still seem to come and go randomly for him):  dada, run, more ("m"), in, on, up, down, go, car, mama (although we are still unsure if this is purposeful or not).  He also recently imitated "tato" for potato and "boy" and has started to surprise us as he has sought to randomly imitate different words we say.
• He still struggles a lot with motor planning but is starting to play noise imitation games with us successfully, where we go back and forth imitating things like "ssss", "gagaga", "bababa", "dadada", "t", "mamama", etc...
• Wesley DESPERATELY wants to communicate with us.  He has the whole picture card thing down pat, regularly going over to his picture card board and examining his cards until he identifies which thing he wants most to do.  Then he brings us that card and signs please.

Receptive Speech:

• He responds to commands such as "sit down", "come to Mama", "no hit", "no lick", "no touch glasses", "give to Mama" and "stop".
• He understands phrases such as "let's go outside", "it's time to eat", "it's time to take a bath", "does Wesley want to play in the water?", "does Wesley want milk?" and comes running when he hears them.
• He is learning body parts very slowly but currently knows where our ears and nose are.  He often finds his tummy and toes as well, and loves to touch his "eyes" (really it's just an opportunity to put finger prints all over his glasses).

Developmental skills:

• This week Wesley started sorting!  He has counting bears in two different colors and we realized a few nights ago that he was sorting them by color, putting only the light brown ones into the bucket.  Mike tried dropping dark brown bears into the bucket when Wesley wasn't looking, but he noticed and pulled them out every time.  Then when Wesley's DT came yesterday, she had Wesley sort shapes by color on a stacker.  He matched the shapes to the similarly colored post every time except for once.  He has also started carefully looking at all of his options before making a choice rather than doing things without looking.
• Wesley also has started to correctly identify where puzzle pieces go.  He is unable to manipulate puzzle pieces to get them to go into the correct spot, but he often sets them down in the right place before we help him to shift the puzzle pieces to fit them in.
• Up until recently, he hated stacking blocks. (We think this had a lot more to do with hating to sit still and concentrate on anything.)  Now he is able to stack up to five blocks with minor assistance.  He puts the block on top, but we assist in keeping the rest of the tower from falling over in the meantime.
• He sits and listens to whole books (VERY short ones) before getting up and walking away.
• He has learned that my diaper bag always has snacks in it and insists on having it opened right away when he finds it in the basket of the stroller.
• Wesley imitated his therapist while playing the other day, watching her walk the Little People boy up to the top of the house and then doing the same.  It is exciting to watch this play skill emerge.
• Blanket time is improving slowly but surely.  I still need to stay on the couch next to the blanket for the full fifteen minutes, but Wesley now understands that he needs to stay on the blanket and play until the timer goes off.  He doesn't WANT to stay, but he UNDERSTANDS my instruction.  My goal is for this to be something that Wesley consistently does without crying or getting off the blanket by the time the baby is born so that I can nurse the baby or deal with a blow-out without worrying about where Wesley is or what he is getting into.

Sensory:

• Wesley willingly crawls through a tunnel (he's been doing this for a little while now). He is also learning how to crawl under small tables and over cushions in obstacle courses without crying, as a way of helping him with his sensory aversions.
• He now enjoys bouncing on an exercise ball and lying inverted on the ball, whereas before this was a very unpleasant experience for him.
• He is still unable to operate a ride-on toy, but is now willing to sit on one calmly while playing with another activity.  This is a huge step for him, as mentioned in this post.

Fine motor skills:

• Wesley's love of gears has helped him significantly with his fine motor skills and graded movements.  If we set up some gears for him, he loves to turn the crank using his pincer grasp and watch the gears move.  As the video above shows, playing with gears gives Wesley plenty of opportunities to practice his expressive language as well.
• He has become much more interested in coloring, loving to both scribble and make dots all over the paper.  Currently he insists on only coloring with the red crayon.  We'll have to work on that.

Gross motor skills:

• Wesley now crawls up the steps and goes down the slide at the park unassisted.  He also walks up the steps holding the rail with minimal assistance.
• He walks up stairs with one hand on the wall with minimal assistance.
• Last week he shocked me when I found him sitting on the couch.  He proceeded to show me over and over that he has now figured out how to get up on the couch by himself.  He's still not interested in sitting there for more than 2 seconds, but we have time to work on that.
• Wesley has figured out how to get into his cube chair all by himself.
• He has mastered climbing up into our Little Tikes cube and then going down the slide all by himself.

Feeding:

• Wesley adds new foods into his diet on a regular basis these days.  Our most recent additions are hamburgers from McDonalds (I know, not very healthy, but his feeding therapist said this would be the best way to introduce him to ground beef without him gagging on it), apples (peeled), and peaches (peeled)
• He now drinks apple juice, both diluted and undiluted, which is a wonderful addition to his preferred beverages - coconut and soy milk.
• We are working on assisted self-feeding, which he is very interested in.  He is currently unable to get food on his fork, but once we help him, he is able to direct his fork to his mouth and eat his food.  Spoons are harder!  We are still doing hand over hand for the entire meal when he eats things like oatmeal and yogurt.
• Wesley is also doing a great job at transitioning from mixing his entire meal into one bowl to using a sectioned bowl and going around in a circle eating a bite of each food.  We still struggle when we get to the vegetables. but he gets the concept now that once he's eaten a bite of vegetables, he'll get a bite of what he wants.
• He is doing a spectacular job of drinking out of a straw, so we have basically eliminated sippy cups now!

While we are always striving to help Wesley to make steps forward in all of these areas, it is also a joy to step back and see how far God has brought him.  We rejoice as we see the work that God is doing in our sweet little boy's life.

The Thorn

I stood a mendicant of God before His royal throne,
And begged Him for one priceless gift which I could call my own.
I took the gift from out His hand, but as I would depart I cried,
"But Lord this is a thorn and it has pierced my heart;
This is a strange and hurtful gift which Thou has given me."

He said, "My child, I gift good gifts and gave my best to thee."
I took it home and though at first the cruel thorn hurt sore,
As long years passed, I learned at last to love it more and more.
I learned He never gives a thorn without this added grace,
He takes the thorn to pin aside the veil which hides His face.

Elisabeth Elliott

Treasured Memories

Some weeks are hard.  Last week was one of those.  After enjoying a family reunion over a long weekend where Wesley received none of his normal sensory therapies, it took my poor boy almost a week to recover.  He just ran in circles all day long, unable to stop and concentrate on an activity for even a few seconds.  He seemed frustrated most of each day, impulsively ripping his glasses off, banging his head into walls, and throwing himself on the ground head first.  By the time Friday came, I knew we needed to do something drastic.  So, we implemented sensory therapy bootcamp, cracking down on therapy time each day by going through Wesley's whole sensory routine every hour and a half rather than just several times a day.  We even added extra activities into his therapy routine.  By God's grace, it seems to have helped.  Wesley's concentration and ability to sit still is remarkably better, and he is back to signing and using words for what he wants rather than just impulsively harming himself and his glasses.

After such a rough week last week, it was a joy to be reminded by the Lord that just as some weeks are hard, some days are fantabulously wonderful.  Yesterday was one of those days.  I decided to take the boys to an outdoor living history museum which also included a carousel, pony rides, and a miniature train.  To understand how amazing yesterday was, it must first be explained that due to his vestibular and sensory issues, Wesley HATES to sit on moving things such as ride-on toys and carousel rides.  He feels off-balance and unstable and cries while fighting to get off of them as fast as possible.

As a result, I fully expected Zach to ride the carousel and ponies by himself yesterday while Wesley watched from his stroller.  In fact, I didn't even plan on trying to help Wesley ride anything because of how dreadful his responses have been in the past.  But God had another plan.  As we arrived at the pony ride, I impulsively asked if it would be alright if Wesley rode one if I stayed right next to him.  The workers of course said yes, and I put him on a pony. Much to my surprise, Wesley didn't fight.  He didn't squirm.  I didn't see terror in his eyes.  Instead, he sat very still and wide-eyed and held on to the saddle cautiously while I protectively held him on the pony.  Then we rode the horses on the carousel,.  Again, Wesley held onto the pole, one hand above the other, and sat very still through the entire ride as if he'd been riding on carousels his entire life.  He quietly and calmly looked around as we went around and around, just taking everything in.  I cannot even begin to express how amazed I was.

As I soaked in each moment, there was much rejoicing in my heart.  I experienced the joy of standing next to my son while he enjoyed a carousel ride and walking next to him while he rode his first pony.  There were many times yesterday where tears began to well up in my eyes as I realized what a gift God was giving me.

Then we moved on to the train.  Even after our successes, I was a bit anxious about holding my little wiggle worm in my lap for the entire train ride.  He has never sat still for more than half of a second before.  We climbed into the train and sat down, and Wesley immediately wrapped his cute little chubby arms around me and peacefully rested his head on my chest. He proceeded to sit just like this for the entire train ride! (Except when he turned his head as he looked around at the scenery in awe.)  In fact, he did so well that when Zach requested to ride the train again, I was happy to consent.  Those two train rides were such treasured moments for me, snuggling with my precious little boy and participating in delightful and uninterrupted conversations with my big boy.

When it was time to leave, my joy was overflowing as I thanked God for my boys and for the wonderful time He had given to us.

I will always treasure these memories in my heart.

Three

Boys, that is.

It looks like our house will be loud, rambunctious, and quite wild for the next eighteen years - and I will have my hands full.  But I wouldn't have it any other way.

We are rejoicing today that God has chosen to bless us with another son, and we pray for him, just as we pray for his brothers, that he will grow up to trust in Jesus as his Savior and love the Lord his God with all of his heart.

The Greater Thing

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things.

We as parents want only the best for our children.  We pray and ask God to protect them from all harm, to keep them from sickness, to heal them from their illnesses, and to provide abundantly for all of their needs throughout their lives.  But what happens when children are born with a disability?  What happens when God chooses not to heal them?  How do we respond when God does not give us the prosperity we asked for?  What is our heart's response when God's mighty hand seems to weigh heavily on our lives rather than easing our suffering?

Cause what if Your blessings come through raindrops?
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near?
What if trials of this life
Are Your mercies in disguise?

It is often easy for us to confuse God's gifts, giving Him greater glory for the gifts that we can see, rather than for His gifts to us that are eternal.  I recently read an article by John Knight about Jesus' healing of the paralytic man in Mark 2:1-12.  In this passage, this man's friends go to great measures to make sure this man is brought before Jesus.  Then, Jesus does the greatest thing ever - He forgives this man's sins.  This man now has a right standing before the perfect judge of his soul, and he has the assurance of increasing measures of joy in heaven with Jesus for all eternity.  Yet, instead of praising God, the crowd accuses Jesus.  In fact, they do not glorify God until AFTER Jesus heals the man's paralysis.

John Knight helpfully reminds us that while Jesus' healing of the paralytic was tremendous, it lasted only a short while.  This man has been dead for many years now.  Jesus' greatest gift to this man was the gift of forgiveness.  As I read this, I was left with the question, "What do I rejoice in?"  Do I wait to praise God until He has answered my prayers for lesser things, or do I glorify Him for His greatest gift of all - salvation for all who believe.

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
And all the while You hear each desperate plea
And long that we'd have faith to believe.

God may or may not ever heal my son.  Despite the fact that Wesley may never be given this "lesser thing", I can rest assured that God HAS loved Wesley, and all of us, so much that He has given us the greatest thing.  He has shown His love for us by sending His Son to be the perfect sacrifice and triumph over sin.  This means that our sins can be forgiven and we can spend eternity with Jesus.  Being with Jesus forever is far better than than being healed of an earthly disability for several decades.  It is far better than protection and prosperity and a lack of suffering in this life.

When friends betray us, when darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home.

I am so very thankful that God has used the trials of this life to change my perspective - to give me a longing for heaven, where all things will be made right and where I will see my Savior face to face.  It is there that Jesus will wipe away every tear from my eyes.  There will be no more death or mourning or crying or pain, for the things of this life will have passed away and all things will be made new.  Wesley will be made new.

Thank you Lord that this is not my home.  I am passing through this earth for only a short time on my way to a perfect eternity with Jesus.

May we always rejoice that just as with the paralytic, Jesus has given us the greater thing.

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can’t satisfy?
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise?

* lyrics are from "Blessings" by Laura Story

4th of July Weekend

Playing in the pool at Great-Grandma and Great-Grandpa's house

Wesley loves Great-Grandpa's pond.  Later in the weekend he got too close and fell in.

Wesley's PT would be proud - Wesley launched the rocket over and over again all by himself.

Is there anything more fun for a four year old than squirting all the adults at the family reunion with a water gun?

Wesley enjoyed the parade this year.  Every time a car or truck or float would go by, he yelled "CAR!"

Wesley and Mommy

My family came up to visit for the weekend.  The boys loved seeing Grandma and Grandpa again.

Chasing bubbles before the fireworks

Look at all these bubbles!