Vacation: Day 2

Vacation: Day 1

My Snugglebug

Zach was never much for cuddling.  Only on rare occasions would he let me hold him and hug him, and this usually only occurred when he was pretty sick.  Then Wesley, our little wiggle worm came along.  His desire to constantly be on the move (he started rolling over at two months old and from then on never stopped) combined with his severe reflux left him with little interest in resting on Mama's shoulder - until recently.

The past few months I have been trying to soak up every moment that I can with my little snugglebug.  Wesley regularly walks up to me, wraps his arms around me, and either lays his head down on my shoulder or rests his cheek on mine.  His hugs don't last long, but they come quite frequently throughout the day.  Whenever he is hugging me and I ask him for a kiss, he tries to pucker his little lips and leans in for me to kiss him.  Each kiss is such a precious moment that I want to savor forever.

Our most treasured moments are when Wesley wakes up from his nap just wanting to be held. He wraps his right arm around my neck, weaving his fingers through my hair, pops his left thumb into his mouth, and lays his head on my shoulder.  Often this only lasts for a few minutes, but sometimes we enjoy a glorious half an hour walking through the house together. What a delight it is to hold my precious little boy in my arms and whisper "I love you" in his ear.

It's times like these when I wish he could be my little boy forever.

Thirty Years of God's Grace

For my thirtieth birthday, my wonderful husband invited some of our dear friends over to celebrate with us.  Then he surprised me by setting aside time for people to share words of encouragement with me and areas where they see evidence of God's grace in my life.  As many of my friends shared, tears filled my eyes as they reminded me of the many ways that God has been at work in my life and over the past two years in particular.

As they shared, the following verses kept coming to mind:

"For you did not receive the spirit of slavery to fall back into fear, but you have received the Spirit of adoption as sons, by whom we cry, "Abba!  Father!"  The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs - heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him." Romans 8:15-17

Because I have trusted in Jesus as my Savior, all I have ever known, and all I will ever know, is grace.  There is no reason for me to fear, for my greatest need has been met.  Because of Jesus' death on the cross to pay for my sins, I will never receive condemnation from God. Instead, He has made me his child - a fellow heir with Christ!  And one day, I will be glorified with Jesus and spend eternity in the presence of my risen Savior.

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