More Spaghetti and Meatballs, Please!

I remember back when Wesley first received his SPIO vest, which provides compression through his trunk.  With the stabilization it provided, Wesley spoke his first word, learned his first sign, and started walking consistently within the first week of putting it on.

This week has provided similar excitement around our house.  Wesley's OT brought one-pound ankle weights to his therapy session last Wednesday.  She explained that wearing them for 20 minutes at a time every two hours would provide proprioceptive input that would assist in organizing his brain, helping him to be more aware of his body, stabilizing him, and calming him.  At first I was skeptical, as this seemed too good to be true. But truthfully, we have been AMAZED at how much these weights have helped our sweet little boy.

Within several hours of having the weights on for the first time, Wesley sat down and worked at a three piece puzzle until he put all three pieces in.  He has never even been interested in a puzzle before, much less able to correctly place puzzle pieces.  He also rapidly stacked a set of ten stacking cups his developmental therapist brought that he had never seen before, and he attentively worked at putting plastic coins into a small slot.

We have been working for months on helping Wesley to sign "please" whenever he needs help instead of screaming or throwing himself on the floor.  On Wednesday night, as Wesley was yelling again, I dutifully went through the process of saying "Does Wesley need help?  Say help, please!" while signing "please".  To my complete and utter shock, Wesley broke out in a huge smile and signed "please".  It was a beautiful moment, as Mike was home and able to see Wesley's sign too.  We cheered and cheered for Wesley as he beamed with delight.  Even more impressively, Wesley has continued to sign "please" when we prompt him, and this has been without the loss of other words or signs.

Wesley has also started imitating our hand motions.  He now shakes his fingers with us as we sing Five Little Monkeys Jumping on the Bed, lifts his arms up in the air as we sing The Itsy Bitsy Spider, and tries to copy us as we gesture while talking to him.  While we would love to see him try to imitate our voices and words, we know that beginning to imitate our hand motions is a huge first step.

On Wednesday night for dinner I served a family favorite - Creamy Herb Tomato Pasta with chicken.  I decided to offer our dinner to Wesley, and he willingly ate several bites before refusing more. While this was not a complete success, Wesley's refusal was not as adamant as usual, which gave us new hope.  So on Saturday night I prepared spaghetti and meatballs, praying that this would be the night that Wesley would join us in eating our dinner.  To be honest, while I was hopeful, my expectations were low.  I fully expected him to take a few bites and then refuse more, just as he had on Wednesday.  Instead, Wesley GOBBLED up his dinner!  I couldn't feed him his meatballs and pasta fast enough.  He didn't seem fazed in the least by the fact that these textures and tastes were quite a bit different from his usual Spaghetti-O's.  And once he had finished all of his very well-done pasta, he continued eating more of Daddy's, again seeming to not notice the difference in texture that would usually bother him so much.

This marked the first night in almost two years that I made one dinner and we ALL ate it!

So today I'm sitting here lifting my jaw back up off the floor and thanking God for the work that He's doing in Wesley's life.  It is amazing to me that God could use two one-pound weights to make such a difference in our little guy.

"Oh, magnify the Lord with me, let us exalt his name together!"  Psalm 34:3

Griefs and Sorrows

I'm normally not a big fan of posting links, as I assume that most people have very little extra time to go read recommended articles or blog posts.  This week, though, I came across two posts that articulated very well some of the thoughts and feelings I have had over the past two years.  If you have a few extra moments, take the time to read them.  They are a wonderful picture into the thoughts of people who are suffering and how to walk alongside them.

When I first read Tricia's post, I wept.  Her sorrows and griefs are much different than mine, but she has a gift with words and has expressed beautifully what it means to weep and have sorrow, but yet, by God's grace, not be overcome.

As she stated so beautifully, I too weep for Wesley, for what has been taken, for what he doesn't yet know that he doesn't have.  I too hate the unwelcome anxiety, the deep sadness and the swallowing grief.  I too have felt every shade of sadness, but have not felt angry.  I have wished, with all my heart, for Wesley to be made whole, but I have never questioned God's sovereignty - or His goodness.  I grieve the injustice of the loss of the life he could have lived, but I do not believe God to be unjust or unfair.  At first it seemed unfathomable for me to get through each day, week, and month, much less the rest of my life (and Wesley's life). But, as Tricia says, by God's grace I have and I will continue to do so.  This is His gift to me.  By God's grace I am not overcome!

As a perfect follow-up, Molly Piper (John Piper's daughter-in-law) wrote an excellent post on what it looks like to walk with someone through the trenches of grief and suffering.  She encourages us, when we want to say "I can't imagine", to instead just try.  Take the time to imagine what it would be like if your child had a disability (or any other tragedy or heartbreak) - what it would be like to care for them and provide for their additional needs; the sorrows of watching them not develop at a "normal" rate; the grief as they are rejected by their peers; the anxieties as you look into the future 20 or 30 years down the road.  No, you won't imagine perfectly.  We can never imagine the full extent of someone else's grief.  But taking the time to imagine helps us to enter into the suffering of others and weep with those who weep.

From my own experience, those who have truly taken the time to imagine our sorrows have also been those who have most compassionately and graciously and lovingly walked through the past two years with our family.

New Blog Design

I will be the first to admit that my computer skills are way behind the twenty-first century.  How I took computer programming classes in college and yet manage to get lost reading the html code on Blogger is beyond me.  Thankfully, my friend Sandra at The Sensible Mom.com came to my aid.  When she offered to redesign my blog for me, I jumped at the chance.  It has been a joy to work with her, and I am so thankful for her kindness in sharing her gifts and talents with me!  To top it all off, I am delighted with the final design!

Sandra is starting her own business designing blogs, and on March 14th she will be hosting a Blogger blog design giveaway on her website to announce the grand opening of her company.  For anyone considering a redesign of their blog, I would definitely recommend considering Sandra.  And for those of you with WordPress blogs, she is planning to start accepting orders for those in April.

Brushing and Spinning

Brushing and Spinning - also known as the tools God is using to teach Mommy that her time is not her own but the Lord's to use as He sees fit.

Early on we noticed that Wesley had an obsession with licking things.  At first we wrote it off as the usual way that babies interact with and explore their surroundings.  As time went by though, instead of seeing a decrease in licking as one would expect, Wesley's need to interact with the world with his tongue only seemed to grow.  We did our best to limit his licking of the floor, the carpet, the pedals on the piano, and other large inanimate objects, seeking instead to direct his licking to small toys he could hold in his hands.

Another thing we noticed very quickly with Wesley was his constant need for motion.  At 2 months old, he started rolling over.  From that point on, he has never stopped moving.  His determination to always be on the move has benefited him greatly in his development of gross motor skills.  He started army crawling at 7 months, crawling at 11 months, and walking at 15 months.  On the other hand, it has been detrimental to his ability to concentrate and focus on any task for more than a few seconds at a time.  As well, he still struggles significantly with balance because of his unwillingness to work on anything related to stability.  To this day, if we want to spend more than a few minutes at a time working on a task with Wesley, we need to put him in his highchair where he can't take a break and run around the room every minute or so.

Wesley - 11 months old

Spinning objects have always held a fascination for Wesley.  He selects toys to play with largely based on whether or not they have spinning parts on them.  Then he focuses intently on his toys while spinning them with his hands.  Once he is satisfied with the spin of the object, he then sticks out his tongue to experience the tactile sensation.  Since we have removed all of Wesley's toys that spin in an attempt to curb this behavior, his favorite thing to do is grab one of Zach's cars or trucks and either spin the wheels while licking them or turn the entire car upside down and spin it around on Zach's train table while watching it closely.  Wesley also loves to spin himself in circles.  He giggles and laughs as he goes around and around until he's so dizzy that he walks into furniture and walls like a drunken sailor.

In the last few months we have also begun to notice his desire for firm pressure.  He regularly comes to us for big hugs and squeezes.  He likes pressing into tight spaces and sucking his thumb while holding a blankie.  And when he's upset, he throws himself prostrate on the floor or throws his head into the wall or the floor.

We have been concerned about Wesley's sensory issues for a while now, so we are thrilled beyond belief that God has provided us with a new occupational therapist who is particularly experienced with helping children with sensory integration disorders.  Marsha has helped us to understand what is going on with Wesley's vestibular system (which contributes to balance and a sense of spatial orientation), his proprioception (the sense that indicates whether his body is moving with the required effort and indicates where the various parts of his body are located in relation to one another), and his sense of touch/sensory system (how he uses the sense of touch to explore the world).

With Marsha's help, we have created a sensory diet for Wesley, providing him with a schedule of daily activities that will hopefully give him the sensory input his body needs to get into an organized state and stay there.

To provide tactile input for Wesley, we have begun a deep pressure regimen which involves brushing him with a special brush every hour and a half throughout the day.  Our hopes are that this will assist in increasing his sense of touch throughout the rest of body so that he doesn't feel the need to seek sensory stimulation with his tongue.  So far we have seen some improvement in this area, which is helpful in providing us with a reason to keep working with him faithfully.  The brushing is followed immediately by compression of Wesley's joints, which provides proprioceptive input as Wesley's brain seeks to stabilize and protect the joints we are compressing.

Twice a day we are also using a vestibular protocal called "the Astronaut Program", which involves us spinning  Wesley around in a circle ten times in one direction and then ten times in the other.  The goal of this therapy is to help improve his visual processing, motor coordination skills and sense of balance.

In addition, we are providing Wesley with "heavy work" activities, such as pulling cushions and heavy pillows off the couch, climbing over couch cushions on the floor, pushing heavy balls and lifting heavy toys up to put them in buckets.  The resistive proprioceptive input obtained through "heavy work" activities helps to improve attention and body awareness, so we are hoping it will help to calm Wesley and organize his nervous system.

It seems that we must not have been busy enough before, since Marsha has assisted us in filling up our days that we might live each day to the fullest, not squandering even a moment of the precious time God has given us.

I just keep telling myself that if these are the tools that God is going to use to help Wesley with his sensory issues, I ought to rejoice in the opportunity to help my son rather than grumble as I brush and compress the joints of a screaming child who would prefer to do anything in the world other than LIE STILL  for a few minutes.

"For the love of Christ controls us, because we have concluded this: that one has died for all, therefore all have died; and he died for all, that those who live might no longer live for themselves but for him who for their sake died and was raised." 2 Corinthians 5:14-15

My Valentine

With the flu raging through our house this week, our Valentine's Day was not what I would have hoped.  Instead of enjoying special time together, we closely monitored temperatures, held boys in our arms, comforted them, and doled out large quantities of medicine.

Instead of taking me out for a night on the town, my Valentine gave me a precious and beautiful gift.  His gift was a gift of love and sacrifice.  As our romantic plans crumbled, my hubby lovingly offered to stay home with our boys tonight so that I could enjoy his exquisitely planned date, even though he would not be able to share it with me.  So tonight, while my husband lives out true love for me, I will enjoy the Broadway musical Les Miserables with a dear friend.

God truly has blessed me with a husband who loves me as himself.

"I am my beloved's and he is mine....His mouth is most sweet, and he is altogether desirable.  This is my beloved and this is my friend."  Song of Solomon

Fear

Fear is a powerful thing.  If I allow it any room in my mind, it will quickly consume me.  This weekend I was again reminded of how important it is to gear up for battle and fight my fears with the truth from God's word.

On Friday when I picked Zach up from school, he said he was exhausted and he had a low grade fever.  By Saturday morning, his fever was very high, he was achy all over, and he couldn't keep his eyes open.  We took him in to an after hours care facility, where he was diagnosed with the flu.  For two nights we were up all night, giving him medicine every three hours, taking his temperature, holding and comforting him, and praying for God to give him a quick recovery.

During that time, I was amazed at how quickly my mind turned to fearing the worst case scenario.  I felt paralyzed by the irrational fears that Zach would keep getting worse until he died.  Then my mind would move on to fears that Zach might survive, but Wesley would surely get the flu too and it would be too much for his little body to handle.  I would try to pray, but Zach and Wesley's impending doom felt much more real than the promises of God.

Yesterday my husband kindly told me that he would be happy to stay home with Zach so I could go to church.  During the service, someone read from Isaiah 43:1-3, which says:

"But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel: 'Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.  For I am the Lord your God, the Holy One of Israel, your Savior.'"

As these verses were read, it was as if the Lord was whispering to me, "Fear not, Elisabeth.  You are mine.  Even as you are walking through the waters of having a sick child, I am with you.  The future is unknown to you, but no matter what happens, it shall not overwhelm you, for I am with you.  I, your Savior, have redeemed you and provided for your greatest need by saving you from your sin.  Now you can trust that I will walk with you through this and protect you so that the flame does not consume you."

Then at the end of his sermon, our pastor reminded us that lots of things are uncertain, which tempts us to fear and worry.  But Jesus is still bigger than all of these uncertainties.  He has done something certain for us.  He has taken away all of our sins.  When we walk through trials, often all that we pray for is the removal of the trial.  But there is a reality much greater - the removal of the wrath of God.  Because of Jesus, God's wrath has passed over me.

This was such an eye opener for me.  I am walking through much greater trials right now than just the sickness of one of my children.  Because I know that these trials will not be removed from my life, I do not pray and beg the Lord to remove them. Instead, I pray regularly for the Lord to use them to conform me to His image and to bring Himself much glory through them.  I pray that God will help me to trust Him completely and to believe His promises that He is sovereign over all of my circumstances, that He is good, and that His plan for my life and for Wesley's life is perfect.  But then when I face a small trial, instead of praying for the Lord to help me to trust Him and believe that He loves my children even more than I do, I am overwhelmed by fear.  I beg the Lord to remove the trial, but I am not asking in faith.  My request is motivated solely by an all-encompassing fear.

So today I am gearing up for battle.  My circumstances have not changed.  Zach is still a very sick little boy, and it is unlikely that Wesley will make it through unscathed.  But today I will take hold of the truths from God's word and wield them in the fight against fear.  I will ask God to help me believe His promises.  And, as Charles Spurgeon said when addressing suffering, "I will kiss the wave that strikes me against the Rock of Ages."

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."  Isaiah 41:10

"I lift up my eyes to the hills.  From where does my help come?  My help comes from the Lord, who made heaven and earth.  He will not let your foot be moved; he who keeps you will not slumber.  Behold, he who keeps Israel will neither slumber nor sleep.  The Lord is your keeper; the Lord is your shade on your right hand.  The sun shall not strike you by day, nor the moon by night.  The Lord will keep you from all evil; he will keep your life.  The Lord will keep your going out and your coming in from this time forth and forevermore."  Psalm 121:1-8

Generous Giving

Since Wesley's birth, God has opened our eyes to the plight of orphans with disabilities around the world.  The suffering and rejection they experience because of their disabilities should not only break the hearts of all Christians, but should stir in our hearts a call to action.  These children truly are the least of these.  

Over the course of the past six months, God has been slowly chipping away at our hearts, showing us that now that He has opened our eyes to these children and their dire plight, it is not OK for us to sit silently and watch as they live out their life sentence.

Mike and I are praying that the Lord would clearly guide us as to whether He will lead us to one day adopt a child with special needs.  But as we wait and prepare to follow his leading, whatever that may be, we also want to follow God's call on our lives by using our money for His purposes.

Our church has been going through a series on generous living, and a few weeks ago our pastor preached from Luke 12:13-21, which is the parable of the rich fool.  The last verse in this passage struck my heart to the core:  "So is the one who stores up treasure for himself and is not rich toward God."

Only a fool believes that his possessions and money are all owned exclusively by him to be enjoyed exclusively by him.  Instead of just being concerned with our own enjoyment of our possessions, Mike and I want to be concerned with wisely using the money God has given us to glorify God and to help others.  Since we have trusted in Jesus as our Savior, He has purchased us by His blood.  Therefore we are His, and all that we own is His as well.  God owns us and all of our stuff.  And God's purposes for our money and possessions include being rich toward God by using our money for His purposes.  This includes not only giving to our local church, but also helping the needy.

Only a fool believes that his stuff will keep him secure.  In order to be rich toward God, we must trust in God to provide for all that we need rather than trusting in our possessions.  We must believe that God will be faithful to our family in order to be able to give generously and sacrificially.

Only a fool believes that earthly treasure is all that matters.  If our focus is on storing up earthly treasure, our hearts will be chained to this world.  Then we will tragically miss out on the unique opportunity of storing up treasure that will never fail for all eternity.

Mike and I left this message praying that God will give us wisdom as we seek to take hold of the unique opportunity of storing up treasure for all eternity.  For, just as the trials that we are walking through are only light and momentary afflictions in light of all eternity, so also any treasure that we store up here on earth is only momentary.  We would much rather be rich toward God.

We covet your prayers as we ask the Lord how we can best give to these orphans in a way that will proclaim the gospel and bring much glory to God.

Yours Forever

"Lord, I give up all my own plans and purposes, all my own desires and hopes, and accept Your will for my life. I give myself, my life, my all utterly to You to be Yours forever. Fill me and seal me with Your Holy Spirit. Use me as You want, send me where You want, work out Your whole will in my life at any cost, now and forever."

- Betty Scott Stam

Food - Ups and Downs

A week after Wesley started eating Spaghetti-O's and other Chef Boyardee canned pastas, he decided that it was time to start refusing all baby food.  The problem with this was that he simply could not live on Chef Boyardee for three meals a day indefinitely.

We prayed that God would help Wesley start eating more table foods, and I prepared fruits and vegetables to bring to his next feeding therapy session.  Unfortunately, that therapy session was a complete disaster.  Wesley refused the steamed and mushy vegetables, the oatmeal, drinking out of an open cup, and even the apple sauce.  Needless to say, I left the therapy session very discouraged.  At subsequent therapy sessions, he also refused small pieces of banana and slices of american cheese.

Thankfully though, that is not the end of the story.  God has graciously answered our prayers for Wesley to start eating again, although not in the way that we had thought best.  Wesley has begun to eat his baby food again.  While it is disappointing to still be feeding him baby food, we are so very thankful that the Lord is continuing to faithfully provide for all of Wesley's needs.  Just as God cares for the birds of the air and the flowers of the field, so He also lovingly cares for Wesley, providing him with all the nutrition that he needs.

Wesley's feeding therapist has been working extra hard to help us introduce new foods to Wesley, but she added to our disappointment by explaining that with Wesley's low tone, difficulty chewing and new gag reflex, it will probably be a long time before he is able to eat fruits and vegetables.  It is much easier for him to eat overcooked or soft pastas and meats that only require one or two chews before swallowing.  Fruits and vegetables, on the other hand, require much more chewing before they are swallowed.  We have also learned that Wesley cannot tolerate foods that are sticky, such as mashed potatoes or hummus.  He has a very high palate, and as soon as his tongue pushes these foods up into his palate, he gags and throws up.

Despite these setbacks, Wesley has started to show an interest in more foods.  He will now eat quesadillas and guacamole.  He also regularly eats slices of thin crust pizza.  He even surprised us this weekend when he ate a slice of hand-tossed Pizza Hut pizza.  In the past he would have spit out the bread as soon as he realized it would require more work to eat, but this time he chewed it!  He also tolerates Cream of Wheat, as long as I mix it with a generous helping of apple sauce or other baby food fruits.  I do have to be careful of this, though, as I often watch his gag reflex start to kick in. On Monday at therapy he ate a few carrots and green beans from a can of minestrone soup (of course he also gagged and threw up when his therapist offered him a kidney bean).  We are praying that this will be the beginning of an introduction of vegetables for him.

Wesley continues to love his Chef Boyardee foods, now eating their Spaghetti-O's & meatballs, ravioli & meatballs, and mac & cheese.  He even permitted a variation when I made Kraft macaroni and cheese with soy milk (gross, I know!).

He seems to prefer salty and savory foods to sweet foods, which means he often refuses graham crackers or animal crackers, knowing that after a while I will give up and give him his veggie straws, pretzels, or goldfish.  He also now eats crackers with peanut butter on them, which have been an excellent source of fat and protein for him.

So despite our setbacks, we have been encouraged overall these past few weeks as we have watched God work in our little boy's life.  We continue to pray that he will accept more foods and more textures, but we rejoice at the strides that he is making.

Words (Plural!)

When Zach was two years old, my grandmother told me I should write down everything he said so that I wouldn't forget.  I remember thinking that it would be impossible to record every new thing that he did or said since at this point he already had a full vocabulary and added new words by the handful each day.  Looking back, it was such a joy to converse with him, but I never rejoiced at new words he spoke the way that I do with Wesley.

So, in keeping with my grandmother's wise words, I want to take a moment to write down and thank the Lord for the new words Wesley has started saying this week.

In the past week, Wesley's speech has exploded.  In addition to the words he was already saying ("all done", "Daddy", and "in"), he is now also saying "up", "down", "on", "off" and "bye".  He also is consistently signing "more", "all done", and "up".  And, he is starting to imitate us more too.  As he poked at my mom's face this weekend, she smiled at him, removed his hand, and jokingly said "enough".  Much to our surprise, he cheerfully looked back at her and said "anuff".

He is also imitating non-verbal sounds when we play games, such as "eee", raspberries, putting his lips together over and over again to make the "p" sound, saying "lalalala", and spitting with his lips closed (which is difficult for him to do with the low tone in his mouth).

The most exciting part of his new explosion of speech is that he seems to be adding words and signs without losing others.  In the past, every time he has added a word or a sign, he has lost all previous words and signs and just used the new ones.  So seeing him add words and signs while continuing to use his other words is a big step for him.  He is still having difficulty with motor planning, sometimes using the wrong sign until we remind him of the correct one, but the fact that he remembers the correct sign as we redirect him is wonderful.

His favorite thing to do is play games where he can use his signs and words over and over again.  He loves it when we turn the lights on and off for him.  As soon as we turn the lights on, he starts yelling "off" until we turn them off.  Then, the moment they turn off, he yells "on" with a big smile.  He could play this game forever.  We also play "up" and "down" with a parachute.  He throws his arms up in the air and says "up". Then, when we lift the parachute up, he throws his arms back down, saying "down".  He laughs and jumps around as we play these games, loving that he has the ability to tell us what he wants and that when he speaks things happen!

Of course, this post wouldn't be complete without sharing the bad news as well.  On Monday we had Wesley's hearing re-checked and it appears that the tube in his left ear is blocked and is starting to fall out.  There is also fluid in his left middle ear again.  So, we have started him on antibiotic drops and then will switch to a hydrogen peroxide solution in a few days in hopes that this will clear up the wax and the fluid.  Please pray that the fluid will drain and that surgery will not be needed to re-insert a tube in his left ear.  We will see Wesley's ENT again in a few weeks to see if the drops and solution helped or not.