A Day in Haven's Life

Psalm 100

Shout joyfully to the Lord, all the earth.

Serve the Lord with gladness;

Come before Him with joyful singing.

Know that the Lord Himself is God;

It is He who has made us, and not we ourselves;

We are His people and the sheep of His pasture.

Enter His gates with thanksgiving

And His courts with praise.

Give thanks to Him, bless His name.

For the Lord is good;

His loving kindness is everlasting

And His faithfulness to all generations.

Today marks the six week anniversary of Haven's stroke.  I have been reviewing some of the video footage of Haven from the past several weeks and I hope you will take the time to look at the following videos to see the miraculous progress that Haven has made.  It is so incredible to me that she looks so normal a mere six weeks after her stroke!  I am so incredibly thankful!  To all of the doctors, nurses, and therapists who have helped Haven, we thank God for you!  Thank you from the bottom of our hearts!

Haven smiles on March 29 - ten days after her stroke.

April 1 - Aaron was thrilled to see Haven grasp a toy coin and puts it in a toy piggy bank.   We were so thankful to see her able to move her arm and fingers.

April 6 - Haven took "baby steps" during physical therapy.  We continued to be amazed and hopeful.

April 6 - Haven feeds herself while watching the Final Four with Daddy.

Two days later, on April 8, Haven pulled play putty apart.  That might not seem like a big deal, but it was another milestone in her recovery because it showed that she could grasp and pull with both arms.  (Aaron missed some of the good action right before this video was shot.)

~April 10 - Haven walks in the lobby at ACH.

~April 10 - Haven brushes her teeth.

~April 17 - Haven pushes Levi on a sitting toy at RMH.

April 24 - Haven swings in therapy.  Not that exciting to watch, but excellent progress in balance.  

April 27 - Haven walks in the grass at home with her boots on, unaided.  She also is able to manage the transition to the gravel and bend over, sit down, and stand up--all unaided.  If this doesn't seem incredible, you must have missed the April 6 video!

A Day In Haven's Life
I thought you might find it interesting to see what a day in the life of Haven is like.  I included some fun photos that I think you will enjoy to help tell the story.

In the morning, I wake up early to prepare for the day while Haven sleeps in to get as much rest as possible.  Usually Haven is awake by 8:00 a.m.  We get her dressed, give her all her medications, and gather the items we will need for the day.  At 8:20, we leave our room and go to the kitchen/dining room area here at Ronald McDonald House (RMH).  I prepare breakfast for everyone while eating my own.  We eat quickly, clean up our dishes, wash up and use the rest room, and then we leave for a day of therapy.

Around 8:40 we walk from RMH to the hospital where Haven has her own room in the day therapy area.  It's nice to have a place to keep our belongings, lay down to take a rest, or meet with doctors.  As soon as we arrive, I place an order for Haven's lunch.  Usually I arrange for it to be packed up for us so we can walk back to RMH for lunch.  RMH provides a free lunch to family members (and guests if needed), so we try to avoid the cafeteria to save money whenever possible.

Therapy sessions are scattered throughout the day.  Our most usual schedule has Haven seeing each therapist once in the morning.  After lunch, we return for one more speech session before completing our day.  Each therapist has a different gifts and strengths, so it's fun to have a variety of wonderful people to work with.  

I love this photo of Haven on the therapy ball with Miss K.  Can you tell Haven is uncomfortable?  On this day Miss K was using the ball to help with core strength, balance, and reflexes.  We know it is hard for Haven, but this is the muscle work that she must do.  Thank God for caring and patient professionals like Miss K!  Thank God for Miss K's humor, she makes me laugh, which is great when you're stressed from dealing with a screaming child!

The therapists at ACH have so many fun tools at their disposal.  On this day in occupational therapy, the therapist was using a platform swing to work on vestibular input.  The vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements.  (See, we're learning a lot of science here as well!) Haven was much more cooperative than we expected this day!

 Here are some great kids!  In this photo Eden and Micah, instructed by Miss J., help encourage Haven to crawl up a ramp by pretending to race with her.  The purpose of this exercise was to strengthen Haven's hip and core muscles.  Although she began this exercise crying, Haven was laughing by the end because she had some really wonderful encouragement from her siblings and fun therapist to help make the physical therapy session fun.  

It's fun to practice dressing and undressing when you have such wonderful costumes to try on.  Thanks to Eden for going along with all of the fun!

Although it's not a great photo, I just had to include this one of Haven with her primary occupational therapist, Miss MB.  She is so encouraging!  I love her gentle spirit and positive attitude.  She is so calming to be around.  I never seem to get great photos of Haven with her though because the table they work at faces the wall. 

Haven has two speech sessions per day with Miss M.  I'm learning so much from Miss M.  She seems to know the best ways to make speech therapy so fun for Haven and gets excited right along with me when Haven has a success!   Today Haven said many color words.  It was so exciting!  Later I learned that Brenna and Eden had been coaching her the night before during my shower.  She really improved with their help.

After Haven's final therapy session of the day we walk back to RMH.  Haven gets a drink and a snack before naptime.  It's not difficult convincing this little gal to take a nap after such a busy day! 

When Haven wakes up, we leave our bedroom to eat in the dining room.  There are some great chefs who volunteer at RMH.  Most are retired folks, who are using their retirement years to help others.  Sometimes there are area teenagers or college students who help with baking projects or clean up projects.  I have to say this place is ridiculously clean due to the many volunteers who take such pride in their work!  I wish they would come clean my house!

After dinner we work with Haven using some of the ideas we learned in her therapy sessions.  Sometimes we play in the RMH courtyard....

 ...other times we play in one of two play areas at RMH.  Each place is cozy and fun.  The 'Bigs' (that's what we call our big kids) enjoy watching The Brady Bunch while Haven takes turns playing with all of the toys.  In this photo she's sitting on a rocking horse while watching TV.  She loves to boss me around - telling me where to put my hands to rock the horse.  Seriously!  What a stinker!

(I added this photo of Eden and Haven at our doctor's office Friday afternoon because I just love their happy faces.  I'm so thankful we took her as her cold didn't go away during the weekend.  I started her on the antibiotic on Monday and she was doing much better by Tuesday.)  

Around 8:30 p.m. I put an end to the 'fun time' and give Haven a bath, her medication, and some snuggles.  Then it's sleepy time for Haven and "free" time for me!  I spend some time with the other kids, make phone calls, try to stay in touch with my best friend Aaron, and update this blog to share the news of how God is blessing us through this season of life.

There you have it; a day in Haven's life as a day therapy patient.  Of course that will all change this Friday when we complete her last day therapy session.  Praise God for Haven's miraculous recovery and for His loving hand for leading her to our family.  Although these past six weeks have been incredibly difficult, I'm so incredibly thankful that Haven Noelle is my daughter.  She is a beautiful reminder of God's faithfulness and love!

The Home Stretch

Today marks the beginning of the end of our stay at Ronald McDonald House. We will leave RMH on Friday and plan only to return in the future as volunteers.
Haven had a good day but I'm just too tired to post anything about it tonight. Instead, I've asked Aaron to share a video of Haven walking in the grass from this past Saturday.

http://youtu.be/bpHbcyaEk6E

A Friend Loves At All Times

A friend loves at all times, he is there to help when trouble comes. -based on Proverbs 17:17

Aaron here.  Just wanted to say thank you to the children from a local church's Sunday School class and their teacher Mrs. W. for the wonderful pack of get well cards they sent us this week!  What a great way to teach the children about God's love and how He calls believers to encourage one another.  We were certainly encouraged!  Many of the individual notes from the children contained the text of Proverbs 17:17 which makes me think that the class has been studying and memorizing that verse.  Keep up the good work kids!  You have certainly made Haven and her parents feel a lot better this week.  I chose the card above because the color and bold letters give a lot of energy to the message.  I'm guessing the young girl who drew it probably has a lot of energy too!  I can't print all the cards, but I do want to say from our family to you all: thank you so much for encouraging us this way--what a blessing...

Haven came home early today for a stop at the pediatrician's office for a checkup of the cold she's had all week.  Could be allergies...  Today Haven was able to clearly articulate the words "arm", "ear", and something else, but I forget now.  She went to sleep with no fuss tonight--praise God that she is not afraid of her own bed.  We are pretty much just in awe of God on a daily basis around here.  He deserves all the credit for the miracle that we see in Haven's recovery.  Any other explanation would be a "cop-out" on the truth.

Blessings in Raindrops, Mercies in Disguise

"And He has said to me, "My grace is sufficient for you, for power is perfected in weakness."  Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me.  Therefore I am well content with weakness, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong.  
-2 Corinthians 12:9-10

Blessings
by Laura Story

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

'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?

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


'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?

When friends betray us, when darkness seems to win
We know that pain reminds this heart
This is not, this is not our home
It's not our home


'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 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?

Laura Story's song, "Blessings" is a family favorite.  Just a week prior to Haven's surgery we listened to this song probably ten times on our way to piano lessons and sang along with the CD, memorizing every line.  More than music, I love 'teachable moments.'  So, on the way to deliver our oldest four children to my parent's home for a sleep-over the night prior to Haven's surgery Aaron and I played this song for them.  After listening, we reminded them that although they were sad that we were to be separated as a family for the next few days we knew that God was in control and that His Almighty hand was on us all.  We challenged our kiddos to watch for blessings over the next several days.  

Do you ever feel like God is preparing you for something?  Well, that night on the way home from our conversation with the kids, I had this uneasy feeling that I was the one who would be struggling to look for the blessings over the next few days.  Looking back, I believe that God used Laura's song to prepare my heart for what was about to occur.  I can now see His finger prints in various situations leading up to Haven's surgery; how He prepared my heart to face the storm and to consider that it might actually lead to blessings.

My initial reaction to Haven's diagnosis was one of questioning.  It was so unbelievable to me that the daughter whose love and trust I had battled to win was facing a life of uncertainty.  I had so many questions for God:  How and why did this happen?  Why was God allowing it?  Why us?  Why Haven?  With such rare odds for a stroke during this surgery, why had we won the 'reverse lottery' (you know, the one that no one wants to win)?  Why had He allowed this to happen to our daughter after we had obediently worked relentlessly to bring her home?

Days later, I clearly remember rocking an inconsolable Haven in the PICU on Easter Sunday morning, praying for Haven and the rest of our family while pondering Jesus' greatest gift of all to mankind - His life on the cross to cover our sins.  I remember coming to this realization:

"I deserve nothing.  Haven deserves nothing.  If that single act on the cross is all He ever did for me/us, it's enough because I didn't even deserve that.  Everything that He gives me beyond that moment in history is a bonus:  my life, my husband, my children, a home, food, friends, vehicles, church buildings, freedom to practice my faith, etc.  Yet, I know God loves me because His sacrifice for my eternal salvation was His Son.  I don't think I could sacrifice my child for anyone, but the Creator of this world gave His Son for me.  It's enough.  I'm loved and I'm thankful."

I know my family is not the only family out there struggling through a crisis.  I am here to tell you that although sometimes God allows devastating events to happen, He still loves us, He is definitely still in control, and He definitely has a plan that involves our good and His glory.  Read Romans 8.  In our humanness we cannot fully comprehend what His plans and purposes are, but we can rest in the peace of a God who is faithful to His promises, always in control, and always seeking reconciliation with those who would love Him in return.  Some don't believe that, but that's clearly what Scripture teaches.  Please remember that in the storms that you face God will be there loving you through them.  You don't have to do it alone, I sure haven't...

OT on Wednesday.  The fun tunnel made crawling not so loathsome.

PT on Thursday--notice we are up on our knees and reaching with support on the left arm.

PT on Thursday.  Haven needs to significantly strengthen leg muscles. 

Therapy Assistant Eden wears a dress to encourage Haven to work on dressing skills.

Haven is learning to sit and focus on intentional play
and communication for longer periods of time. 

Haven is learning that it is okay to drink from a cup.
Micah gives a demo on proper technique--his incredible patience should
earn the Big Brother of the Century Award.

Amazing Love

"A new commandment I give to you, that you love one another; just as I have loved you, you also are to love one another.  by this all people will know that you are my disciples, if you have love for one another."  - John 13:34-35

Every time one of our kids gets sick I manage to get it too.  When Haven came down with her latest cold, I doubled up on my use of hand sanitizer and prayed that I wouldn't be a recipient of her germs, but it was probably wishful thinking considering the fact that she was sneezing in my face.  Anyhow, Haven's crud hit me on Tuesday morning.  Tuesday's therapy sessions were so difficult.  Since Haven wasn't feeling well, she was very uncooperative.  In addition, Levi was determined to get my attention at all costs.  I spent much of the day working with him on character building issues like self control, obedience, thankfulness, and cheerfulness.  :-)  Since I was feeling ill, every effort seemed like I was running a marathon.  By the time my family returned to RMH (Ronald McDonald House) following the Akron Aeros game, I was feeling pretty poorly.

I am so thankful that Aaron was able to take off work to help me here--what a great partner I have!  Aaron originally planned on being here for Thursday's therapy sessions so he could learn from the therapists how to help Haven with therapeutic activities at home.  He is relieved to have two days of "training" and to get to spend time with Haven. (Another bonus was that he was "available" to change the first stinky diaper in seven days.  Ewww....sorry, dear!).

My experiences this week remind me that God uses others to care for us.  He used Ruth to care for Naomi, Jonathon to help David, John to care for His mother, Paul to care for the churches, and in James 1 He commands all believers to look after orphans and widows.  As our family was discussing this topic today, Micah reminded me that we can see God's hand of help in our national history like when God used Squanto to help the Pilgrims.  There are so many more examples!  We have cried tears of joy and thanksgiving at the loving support of so many who have encouraged our family through their demonstrations of the love of Christ.  God has used so many loving people to care for our family.  We have been blessed with meals, child care, hospital visits, hospital help, house cleaning, gift cards for gas and food, and gifts of cash to help with bills, meals, and travel.  In our darkest hours, God used His people to lift us up and encourage us to "press on".  And there are literally hundreds of brothers and sisters in Christ lifting up our little girl and family in prayer--from various local churches to believers around the world.  They are fulfilling Jesus' command from John chapter 13 to love one another.  When that fact really sinks in and hits me I am overcome with awe at the awesome God that sovereignly directs it all!  His care and love for us is absolutely amazing!

The Benefits of Being Uncomfortable

I will extol You, O Lord, for You have lifted me up, 
And have not let my enemies rejoice over me.  
O Lord my God,
I cried to You for help, and You healed me.  
O Lord, You have brought up my soul from Sheol;
You have kept me alive, that I would not go down to the pit.  
Sing praise to the Lord, you His godly ones,
And give thanks to His holy name.
For His anger is but for a moment,
His favor is for a lifetime;
Weeping may last for the night,
But a shout of joy comes in the morning. 

Now as for me, I said in my prosperity,
"I will never be moved."
O Lord, by Your favor You have made my mountain to stand strong;
You hid Your face, I was dismayed.
To You, O Lord, I called,
And to the Lord I made supplication:
"What profit is there in my blood, if I go down to the pit?
Will the dust praise You?  Will it declare Your faithfulness?

"Hear, O Lord, and be gracious to me;
O Lord, be my helper."
You have turned for me my mourning into dancing;
You have loosed my sackcloth and girded me with gladness,
That my soul may sing praise to You and not be silent.  
O Lord my God, I will give thanks to You forever.
-Psalm 30

While at home this weekend, I found myself dreading Monday morning when I would return to RMH (Ronald McDonald House) for another week of Haven's day therapy at Akron Children's Hospital.  I believe that dread started on Friday as I was packing up some things to bring home while leaving other things in our room at RMH for the following week.  All I could think about was that I did not want to return; that I wanted things back to 'normal'.  Without question, home is my favorite place to be on this earth.  The reason why I like it has nothing to do with the house itself or the possessions contained therein.  I love being home because I enjoy knowing where things are, mapping out the day's agenda, choosing what food to cook, and organizing things the way I like them.  At home I find comfort knowing that all my people are under the same roof and that my partner, Aaron, has my back when the stresses of life become too much to handle alone.  Home is comfortable to me because it's a place where I find I have a purpose and a mission:  to raise my children to love the Lord and serve Him.  Yes, for me home is the most comfortable and secure place on earth.

Through the trials that God has allowed to happen to our family, I am learning much about my faith and attitudes.  I'm learning that being comfortable isn't necessarily good when you are a Christian.  Hidden in my comfortable life are distractions that pull me away from my relationship with Jesus Christ.  In my comfortable life where things are going well I often spend so much time on family, housekeeping, and other 'important work' that I'm left with less time to pray, read the Bible, or serve Him throughout my day.  In comfort, I sometimes relax and lose my sense of urgency that life is fleeting and each day is a gift from my Creator.

The result of God's allowing these trials to shake up my comfortable life is that He is gradually changing me to be the person He intended me to be.  Living away from home has forced me to slow down and has provided more time to be still and meditate on God's word.  Time that was spent on cooking and cleaning is now available for prayer.  I went into this kicking and screaming, but God has given me a new outlook on life...and a new appreciation for the benefits of not being comfortable.

Haven Health Update
I met with "the team" this morning and received good news: they moved our target outpatient therapy completion date up one week--that means we get to go home on May 3 instead of May 10!  Everyone in our meeting is pleased and surprised by Haven's rapid progress.  There is still work to be done, but we are so thankful for how far Haven has come.  We continue to be amazed at God's goodness to us and will have more details about this development in the next few days.

Aaron brought the girls up this evening and right before dinner I asked him "Is there an Aeros game tonight?  Wouldn't it be neat to go to a game?"  Aaron said "I wonder if they give RMH guests free tickets?"  He went to the evening house director and she made a phone call and came back to us about ten minutes later and said "Your seven tickets will be waiting at any ticket window.  Just say 'Will Call for Aaron Walker' and they'll print them right there."  We ate our dinner more quickly than we planned, grabbed some jackets, and walked the block over to the stadium.  A nice man behind us gave us the foul ball he caught.  Levi got a T-shirt from the t-shirt slingshot crew.  It is adult XL, but maybe he'll grow into it someday.  We left at the seventh inning stretch and had a blast.

Back in the Saddle Again

"Come to Me, all who are weary and heavy-laden, and I will give you rest.  Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls.  For My yoke is easy and My burden is light."  -Matthew 11:28-30

I am going to keep this post brief tonight for many reasons, but most of all because I need sleep.  Today we are back in the saddle again.  After a very busy weekend at home, I returned to Akron Children's Hospital this morning with Haven, Micah, and Levi.  Today Haven had therapy sessions from 10-3 with an hour long lunch break.  My wonderful mom drove us up here this morning and spent the day helping me with Levi. Micah was also a first rate helper this evening.

The morning started with PT lead by a another new physical therapist.  Haven was very cooperative.  She spent the entire hour playing with her favorite thing:  food.  Miss D found a shopping cart and plastic food toys to play with.  Our boys spread the food out all over the therapy gym and Haven had to walk around with her cart, bend over, and pick up each piece of food.  A couple of times Miss D had Haven crawl up a ramp to get to the plastic food.  Crawling helps build muscles in your hips - an area where Haven is weak.  Haven seemed to have fun in PT playing with the shopping cart.  What a relief!

Speech came next today.  Haven spent her morning session with Miss P and Mimi (that's what our kids call my mom).  Since speech is Haven's best session, I took the opportunity to lie down with Levi instead of attending her therapy session.  It was a great decision because Levi needed some extra attention.  Micah seemed content to hang out with me too.

We chose to eat in the cafeteria for lunch today.  I highly recommend the chicken pot pie.  It was very good!  Mom tried to help feed Haven, but our silly girl would only take bites from a fork that I held.

After lunch we attended Haven's second speech session of the day.  Haven did well with everything  except returning toys that she wanted to continue playing with.  In a last-ditch effort to remove a toy from Haven's clutches, the therapist said, "If you give me that brush, you can pick some new toys to play with."  Don't you know that she gave up the brush pretty quickly after that (additional proof that Haven understands much of what we are saying).

Our last session of the day was OT.  It went well today.  Haven's therapist shared some tips with me to help Haven improve, and she had positive things to say about Haven's progress.  I think OT is the most difficult to see improvement at this point, so it was good to spend some time listening and observing.

The boys, Haven, and I moved back into RMH this afternoon.  Haven actually skipped her nap because she fell asleep briefly during the quick ride from the parking garage to RMH in Mimi's van.  Of course she woke when I carried her inside RMH.  As a result, guess who was crabby today?  I have to tell you that the highlight of my day was learning that dinner was being provided by Chick fil A.  I could eat there seven times a day!  ;-)  What a blessing that I didn't have to fight with my Littles to get them to eat dinner tonight.  Hooray for Chick fil A!

IHaven has a raging head cold.  She came down with it yesterday late afternoon, and it came on fast!  Haven is very miserable.  If things are worse tomorrow, I'll have to cancel some of her therapy sessions in favor of catching up on some much-needed rest.  Aaron was up with our poor darling many times last evening and it already looks like that will be me tonight.  So, I'm going to say goodnight.

Please pray for an important meeting I am attending tomorrow morning at 9:45 with Haven's therapy team.  I'm sure it will be fine, I just hate attending those kinds of meetings without an extra set of ears to pick up all of the details.  We are really trying to keep Aaron at work as much as possible, so I'm going to handle this one solo.  Also, please pray for this weary mom.  I am beginning to feel run-down and exhausted.  Living at the hospital is becoming a heavy burden to bear.  Every day is beginning to feel like an exercise in determination.  I want to do the best thing for Haven, so I press on.  Isn't it wonderful to know that we serve a loving God who knows our burdens and cares for us?  For my friends out there struggling with weariness - struggling to tread water in a vastly deep ocean full of trials; the verse above is for all of us!  Trust your burdens to the Lord!  I'm praying for you all too, dear friends!  "Cast all of your anxiety on Him, because He cares for you."  -1 Peter 5:7

Marvel With Me

Now Peter and John were going up to the temple at the ninth hour, the hour of prayer.  And a man who had been lame from his mother's womb was being carried along, whom they used to set down every day at the gate of the temple which is called Beautiful, in order to beg alms of those who were entering the temple.  When he saw Peter and John about to go into the temple, he began asking to receive alms.  But Peter, along with John, fixed his gaze on him and said, "Look at us!"  And he began to give them his attention, expecting to receive something from them.  But Peter said, "I do not possess silver and gold, but what I do have I give to you:  In the name of Jesus Christ the Nazarene--walk!"  And seizing him by the right hand, he raised him up; and immediately his feet and his ankles were strengthened.  With a leap he stood upright and began to walk; and he entered the temple with them, walking and leaping and praising God.  And all the people saw him walking and praising God; and they were taking note of him as being the one who used to sit at the Beautiful Gate of the temple to beg alms, and they were filled with wonder and amazement at what had happened to him.  

While he was clinging to Peter and John, all the people ran together to them at the so-called portico of Solomon, full of amazement.  But when Peter saw this, he replied to the people, "Men of Israel  why are you amazed at this, or why do you gaze at us, as if by our own power of piety we had made him walk?  The God of Abraham, Isaac and Jacob, the God of our fathers, has glorified His servant Jesus, the one whom you delivered and disowned in the presence of Pilate, when he had decided to release Him.  But you disowned the Holy and Righteous One and asked for a murderer to be granted to you, but put to death the Prince of life, the one whom God raised from the dead, a fact to which we are witnesses, And on the basis of faith in His name, it is the name of Jesus which has strengthened this man whom you see and know; and the faith which comes through Him has given him this perfect health in the presence of you all.  - Acts 3:1-16 

Aaron and I enjoy listening to good music.  When we first became parents, we decided that although we are 'music people' (we both attended college to become music teachers), we were not going to force music down our children's throats.  How blessed we are that all of our children enjoy music in some shape or form.  Since our faith is so important to us, it made sense to provide them with some great CD's and DVD's with Bible songs on them.  Sometimes one of those songs can get stuck in my head for awhile.  This week, I've been humming a tune from one of those CD's.  It goes like this:

"Peter and John went to pray.
They met a lame man on the way.
He asked for alms and held out his palms,
and this is what Peter did say:
"Silver and gold have I none,
but such as I have give I thee.
In the name of Jesus Christ of Nazareth rise up and walk!"
He went walking and leaping and praising God...."

So tonight I just had to look up the passage that children's song comes from.  It's found in Acts 3.  I have to tell you after reading several times it still gives me chills.  To think of a man paralyzed from birth able to walk and leap immediately at Peter's invocation of Jesus's name blows me away!  Not only was he healed, but he was completely healed.  He wasn't limping.  He didn't get tired.  He didn't need therapy.  He was LEAPING and praising God!  WOW!  How AWESOME is our God!

Haven has been working diligently at walking since the stroke following her heart surgery on March 19, 2013 - just four weeks and two days ago.  At first she couldn't even support her weight.  She screamed if we even tried to put her feet on the floor.  Then, two weeks ago she was standing while holding on.  And then she was suddenly standing alone a day or two later.  Daily her legs became stronger, but she was having significant trouble with balance until last weekend when Haven surprised her daddy by showing him that she could walk a few feet by herself from me to him.  Seeing my husband's surprise was a pretty cool moment for me.  (I had seen her take a few steps earlier that day in therapy.)  Well, this week Haven improved so very gradually that I didn't fully realize how well she was doing until today when she determinedly removed her little hand from mine so she could walk unassisted.  I panicked, thinking surely she would take a nose dive at any moment and moved into position to catch her.  Remarkably, that feisty little girl kept walking, and walking, and walking....until I realized that she had walked at least 25 feet - all by herself!  It was at that point that I finally took my eyes off of her body and glanced at her face.  I couldn't look away.  Stunning!  It was so beautiful!  Our baby girl was just glowing with sheer joy!  Planted on her face was one of the best smiles I've ever seen, her dimples were deep and beautiful, and she was making this excited, giggly girl sound.  As I stared at her, the words, "...Walking and leaping and praising God..." went through my mind.  Praise God!

At least once daily, I hear someone at the hospital marvel at how well Haven is doing and how quickly she is progressing.  Many of them are therapists who met her in the PICU when she was unable to move anything but her head and eyes.  That was only three weeks ago.  Three weeks!  Don't misunderstand, she still has a long way to go, but merely three weeks ago I saw the scans of our daughter's brain.  It was terrifying and there appeared to be such large areas of damage.  Not one doctor would even give a glimmer of hope because the pathways in the brain are such an unknown, unpredictable thing.  Now they marvel at her progress.  Aaron and I marvel at Haven's progress as well, but we are not surprised that He who Created the human brain is able to heal it.  Instead, we are in awe of how powerful, how AWESOME, how incredible our God truly is.

God always answers prayers, but sometimes His answer isn't the one we hoped for (like when we found out Haven had a stroke).  From the beginning, friends have asked what they can do for us.  My answer has always been and will continue to be, "Pray for Haven's full recovery.  Pray that in a year from now we can hold up our daughter and say, "Look what God can do!""  To him be the glory!

 

Crazy Busy

"Let the peace of Christ rule in your hearts, to which indeed you were called to one body; and be thankful."  -Colossians 3:15

Today was a good day for us here at Akron Children's Hospital.  I'm so thankful that we didn't have another day like yesterday.  I was prepared for it, but still hopeful that we weren't going to venture down crabby lane once more.  Our day started off beautifully first thing this morning when, Praise God, everyone woke up in a pleasant mood.  That doesn't happen often in the Walker family.  We have two Littles (that's what we call our two youngest - the older three we call the Bigs) who don't necessarily like morning.  They want to stay in bed and be cuddled.  When we have to be somewhere early in the morning that isn't always feasible.  Today, we were dressed and ready for breakfast by 8:15.  We had just enough time to make and eat breakfast, clean up, take medications, go potty, and walk out the door by 8:45.  For some reason, we didn't exit the RMH until 8:53.  It takes ten minutes to walk to day therapy because we are not permitted in the door that is closest to us.  It is an employee's entrance only, requiring an employee i.d. badge, even though we exit through that door all of the time.  Today we were thrilled that an employee was entering the hospital through that door as we were walking by.  We decided to take advantage and enter the hospital behind him, cutting five minutes off of our walk.  We arrived at the therapy unit with a minute to spare....whew!

I guess being on time and getting to use the special employee only door seems like silly things to remark on, but you have to understand how different it is living at Ronald McDonald House (RMH).  The rules at RMH state that your children must be with you at all times.  At home, my kids make their own breakfast as they get ready, then they are ready to help with the Littles as needed.  Here at RMH, our Bigs have to wait until everyone is ready so we can all go to the kitchen at the same time.  It wastes quite a bit of time.  Also, we are not permitted to have food in our rooms, so there is no option to eat while getting ready.  This is just one of the many changes that we are getting used to.  

All three therapy sessions went smoothly.  Haven met a new speech therapist today and was so at ease that I left the room for a half hour to hang out with Levi and Brenna in Haven's room.  (All day therapy patients get a small room with a bed in it for resting between sessions.  They also get free lunch.)  Since all of Haven's therapy sessions were back to back today, we were busy all morning.  PT went smoothly.  Once again, Miss K walked into the room and scooped Haven up with all of the confidence in the world.  Haven looked nervous for just a second before Miss K had her smiling and thinking about toys.  One thing that is currently motivating Haven is getting to choose which toys she will get to play with.  Today she chose magnets, which she had to stand up and reach for then bend over and pick up new ones out of the bucket.  It's really clever how therapists 'trick' kids into doing the work that needs to be done.  Also in PT we had a really great moment when Haven was riding a bike in the hallways with her brother Levi.  It reminded me of old times watching the children play outside together and I had to take the moment to PRAISE GOD for how much He has already healed our little Haven.  Do you remember that three weeks ago Haven couldn't move her arms or legs, talk, eat, sit up on her own, or hold her own head up?  That's how far we've come in such a short time! Today Haven also took quite a few steps on her own without any assistance.  Several therapists who came to see Haven in the pediatric ICU were amazed at her progress in such a short amount of time.  It's truly amazing and gives us so much hope for Haven's future.  OT went so well today that I was able to sit on the opposite side of the room from Haven without any protesting from her. It was a great moment!

At noon, we hurried over to the Heart Center in the Considine building for Haven's one month post op visit.  I thought we were there for a quick check, but we ended up being there for a two hour appointment including an EKG, ultrasound, and two separate discussions with Haven's cardiologist.  Haven's heart is doing beautifully.  Her patch is working perfectly.  We will not have to see the cardiologist for another year.  Levi had already sat through three hours of therapy, but did so well  that I was able to reward him with time on his favorite playground in front of the hospital after Haven's appointment.  We ate lunch at 2:15 in the hospital cafeteria and then walked back to RMH for the Littles afternoon naps.  They slept for about 75 minutes, waking when their Daddy and other siblings walked through the door.  What a blessing it was to spend some time with my entire family this evening.  The kids enjoyed time together in the RMH play yard and then we went to the basement rec room to watch The Brady Bunch.  The Bigs thought that it was hilarious, but Levi kept asking for Mickey Mouse Clubhouse.  

Tonight Aaron took Levi and Brenna home with him around 8 p.m. which left me with Micah and Eden for the next two days.  I am glad for their company and look forward to spending extra time with them.  They have been patient while Brenna and Levi had their turn with Mom and Haven.  Unfortunately, Levi did not like the idea of going home without Mom and Haven.  He was quite anxious from the moment that Aaron walked in the door this evening.  I think he knew it was time to leave and that he wouldn't be seeing me again for a couple of days.  That's so difficult to explain to a 4 year old.

One more bit of positive news is that our projected release date from day therapy is in 3 1/2 weeks!  We are shooting for May 10 is our target completion date.  That's such exciting news!  Of course Haven will have continued therapy after that, but we will be able to leave RMH and live at home.  How I look forward to going home for good!

Sorry that there are no more spiritual observations today and that this is more crude of an entry than I usually write, but I am falling asleep as I write this entry.  I'm headed to bed!  

May His name be praised!

You Can Lead a Horse to Water, But You Can't Make Her Drink!

"Children, obey your parents in the Lord, for this is right.  Honor your father and mother (which is the  first commandment with a promise , so that it may be well with you, and that you may live long on the earth.  Fathers, do not provoke your children to anger, but bring them up in the discipline and instruction of the Lord.  Slaves, be obedient to those who are your masters according to the flesh, with fear and trembling, in the sincerity of your heart, as to Christ; not by way of eyeservice, as men-pleasers, but as slaves of Christ, doing the will of God from the heart.  With good will render service , as to the Lord, and not to men, knowing that whatever good thing each one does, this he will receive back from the Lord, whether slave or free.  And masters, do the same things to them, and give up threatening, knowing that Both their Master and yours is in heaven, and there is no partiality with Him."  -Ephesians 6:1-9

I'm not going to waste your time by boring you with all of the details, but I think just maybe you can tell by the title of this post that things did not go quite as well today as they did yesterday.  In fact, today was the total opposite of yesterday.  With the exception of speech therapy, Haven was very uncooperative.  It didn't matter what we tried to do to calm her, convince her, reassure her, and encourage her, she just cried...and cried...and cried.  She told the therapists 'no' and screamed for her Mama.  I felt terrible for the wonderful therapists who were assigned to work with Haven today.  I felt badly for poor Brenna who probably lost some of her hearing while witnessing this screaming banshee situation for the first time.  I felt badly for Levi who just wanted a little attention from his mom; a mom who was unable to give it because of one feisty little girl.  

Over the weekend our oldest son Micah pointed out that Haven's scars from her heart surgery resemble a bright red exclamation point.  We laughed at how fitting that is for her feisty personality.  That big personality of hers was really working for her in the early stages of therapy, but we seem to have hit a wall today when our little gal refused to stand, walk, or cooperate in any way shape or form while the rest of us sat by helpless to help her.  I was really feeling frustrated as we left the therapy unit this afternoon.  I felt frustrated that no matter how much I wanted to help my little girl relearn things like how to stand up by herself, roll over, and walk without assistance, there was nothing more that I could do. It's certainly a helpless feeling.  

During this past month, I've been surprisingly introspective.  I'm amazed by the lessons that God has been teaching me.  (Full-time theologians please don't tear me apart...I recognize my weaknesses, but I feel so compelled to share what God placed upon my heart today.  I trust that God can use these humble words for His purpose!)  Today, in a quiet moment while Haven was sleeping, I meditated on John 3:16 which says, "For God so loved the world, that He gave His only begotten Son, that whoever believes in Him should not perish, but have eternal life."  I contemplated how Haven's team of doctors, therapists, parents, and siblings are offering her the gift of recovery that she can either accept or reject.  It's impossible for Haven to recover by refusing help, insisting that things stay the same, and not trusting the ones sent to help her; she must submit to the will of her team to recover.  She can't earn her recovery simply by flashing her gorgeous smile or manipulating people to allow her to take life easy and do things for her.  No way!  Haven has to choose to obey and do what we all know is best for her.  Similarly, God gives mankind the freedom to accept or reject the free gift of salvation that can only be found in Christ Jesus.  We can't get to heaven on our terms, living our lives the way we want, allowing society to shape our views on God.  We cannot use works to get us to heaven, or ignore the fact that acceptance of God's gift of salvation means submitting to His will - not our own like little Haven is trying to do.  We have to trust Him, obey Him, and accept the gift He offers.  

Of course, Haven is a mere toddler, and I expect her to act like one.  She had a bad day today, but I'm praying that tomorrow will be better.  I pray that God will help Haven to trust and obey her team and that He will give her the gift of a full recovery from this stroke for His glory!  More than that, I pray that Haven will know God and accept Him as her Savior one day.  I know that He can do mighty things with a will as strong as hers and I believe that He has a fantastic plan for her life.  It is my continued prayer for my daughter and our family that God will work things together for good through this situation.  God is good!  He promises He will and I'm watching for it!

Off to a Promising Start

Therefore, confess your sins to one another, and pray for one another so that you may be healed.  The effective prayer of a righteous man can accomplish much.  -James 5:16

We had such a wonderful weekend together as a family.  Although it wasn't very relaxing, it was just so wonderful to feel 'normal' again.  We ate at Chipotle, Haven's favorite restaurant and went grocery shopping on Saturday night.  We also had a mix up with Haven's seizure medication that resulted in Aaron running to Boardman's Walgreen's at 10:30 p.m.  On Sunday we attended church as a family.  It was so wonderful to worship in God's house once more and to see our church family.  Haven surprised us all by crawling and walking by herself a few feet at a time.  She is shaky, but improves daily.  I guess home is the most therapeutic place to be!  Unfortunately, packing took up a great deal of time on Sunday so the day flew by.

The theme for today was change.  We have changed therapists, housing, and schedules today.  I will admit it; I was a bit apprehensive about all of this 'newness'.  Since I am a rigid creature of habit, I really enjoy having a predictable routine, but today went well.  It was extremely difficult to leave the house this morning, knowing that we would not be together as a family in our own home again until Friday night.  I had to change my bluesy attitude to one of thanksgiving that we now have the weekends to spend together.  That is definitely a positive step of progress.  I keep reminding myself that in the whole scheme of life, four to eight weeks is not a terrible amount of time.  I CAN do this.  Still, it was gut wrenching watching Aaron walk out the door of RMH tonight with two long-faced children whose turn to stay with Mom doesn't come until Wednesday night.  SO tough!

Let's talk about more positive things...Today was evaluation day for Haven with all of her new therapists, so it wasn't as intensive as it will be as she progresses.  I shared last week that I was apprehensive about Haven working with a new physical therapist.  After all, the last time that happened it didn't turn out too well.  Haven, like her mom, often doesn't do well with change.  Mix in high intensity stranger anxiety and you have a recipe for an hour long screaming, snotting....well you get the picture what that hour might look like if you refer back to the crying face photo a couple of posts ago.  Anyhow, PT was our first session for the day.  Remember how PT is our least favorite event?  Today I was stunned as our new physical therapist walked into the room, picked up our daughter and told her that they were going to go look for some toys to play with.  Amazingly, Haven went right along with Miss K without any resistance - and she was SMILING!  I was so stunned I murmured something about Haven having stranger anxiety and Miss K shrugged it off and told me we weren't going to focus on that today.  Do you know what happened?  There was absolutely NO screaming for PT today!  NONE!  Haven played and didn't even realize she was working.  It was beautiful!  Hooray for no screaming fits!  Hooray for the power of prayer!

Occupational therapy went pretty much the same way.  Although we worked with a new therapist Haven was just fine.  Perhaps this is because Miss MB offered her a snack while working on Haven's pincer grasp.  Haven was mostly cooperative and even asked for 'more' when it was time to leave.

Our last therapy session was speech.  Haven was able to follow instructions and demonstrate her knowledge of English vocabulary.  In her assessment, she scored 'low middle' which the therapist and I thought was wonderfully incredible since Haven was only introduced to the English language eleven months ago.  So, we are not nearly as behind in language skills as I thought.  Yet another blessing.  Haven still needs much work learning new words and enunciating them better, but that will come with time and practice.  The best news of the day is that she understands more than we thought she did.  We just have to get her to pay attention to what we are telling her first!

Another positive change today is that our kiddos are with us more - they're here assisting with the move into RMH and observing therapy sessions.  Brenna and Levi are staying with me for a couple of nights and then it will be Eden and Micah's turn.  Levi was permitted to ride a little bike around the gym while Haven participated in PT.  He was so happy to ride a bike indoors and only had a few close calls.  We all ate lunch together in the cafeteria as a family and enjoyed some afternoon playtime in the RMH play yard.  Dinner was a wonderful meal prepared by one of the many RMH volunteers.  The bread pudding was delicious!

As you can see we have experienced many blessings today.  Thank you to our faithful friends who are praying specifically for this week to go smoothly.  So far, we're off to a promising start.  One small area that needs improvement is that our little ones are having a difficult settling down at the end of the evening.  As I write this, Levi is still awake and causing quite a commotion.  It's so hard to sleep in an unfamiliar place!  In addition, Haven refuses to sleep in her own bed.  The only way I can get her to fall asleep is to snuggle with her in my bed (which is a twin by the way).  My, how far we've come!  Just a month ago, Haven didn't want me to touch her at bedtime.  I'm so thankful for all of the blessings that have come from Haven's stroke!  It's so great that she is not only making physical improvements, but emotional ones as well.  Thank you, Lord, for healing your girl both physically and emotionally!  Thank you, friends, for lifting us up in prayer and for the many ways you are supporting us through this challenging time.  We are so blessed!

May His name be praised!

April 13, 2013 1:32 p.m....

Going HOME!!!!

Moving On

"Dearly beloved, I beseech you as strangers and pilgrims, abstain from fleshly lusts, which war against your soul."  - 1 Peter 2:11

Today was a pretty exciting day for Haven and me.  We had many doctor visits as everyone wanted to check their little patient one last time.  We also saw a couple of social workers, three therapists, and many, many other people who are coordinating our move to outpatient therapy throughout the day.  Haven's therapy sessions didn't go quite as spectacularly today as they did yesterday.  I blame it on the fact that we didn't get much sleep last night.  For various reasons, Haven couldn't settle down.  Anyhow, although this mom is completely exhausted, I'm excited too.  If all goes well, tonight is Haven's last night in the hospital.  Tomorrow we have three therapy sessions and then, after twenty six days, Haven will be released to go home.  I realize our stint at home will be brief, but I just can't wait to have my entire family under one roof for the first time in almost a month.  I am so emotional just thinking about it!



Moving on to next week, I am a bit apprehensive about moving into Ronald McDonald House (RMH).  I'm nervous about Haven's transition to outpatient therapy as well.  It wearies me a bit thinking about starting over with new therapists and social workers, new routine, and a new living space and foods that we are unused to.  I'm growing increasingly weary of living out of a suitcase and having my days scheduled for me.  I'm weary of being away from home.  I miss my husband, my children, my friends, my church family, my comfortable bed, and my freedom.  I pray that the time at home this weekend will serve to encourage me, not to make me want to cling to all that is comfortable.

RMH is a huge blessing, but no one wants to stay there for the rest of their life.  RMH is temporary - but home is where we are supposed to be.  I have no plans to move a lot of belongings into RMH, spend time fixing up our room, or growing attached to the place.  I think we will be very happy to leave there when the time comes.  I guess I feel about RMH the way God wants us to feel about life here on earth: it is temporary; it's not our forever home.  The Bible teaches that a longing to be in our eternal home in heaven is natural and proper for the Christian.  But when we get comfortable in this life it becomes harder to detach from worldly pursuits.  We are literally aliens and strangers (pilgrims) in this world.  Don't get comfortable in this life!

Health update:
Today's therapy sessions were good, but Haven seemed very tired.  She did not want to walk much, but was willing to sit and play.  I don't remember seeing her fall down from a sitting position all day!  That is definitely great news!  Haven's swallow study went fine.  She has been upgraded to a toddler diet which means no more blended pizza, etc.  We are so happy for her!  I am encouraged that Haven seems to be doing better with liquids.  We still have to thicken them, but not as much.  Thanks so much to those who have been praying for this.  It is a huge relief to know that I don't have to blend foods for Haven.

A Different Kind of Day

"You have anointed my head with oil, my cup overflows." - Psalm 23:5b

Today was a different kind of day.  I actually spent most of the day at home with our four oldest children.  Although we did share dinner together in the hospital cafeteria (even Haven joined us in the little red wagon that she loves), it's difficult to have meaningful conversation with your spouse when there are five children vying for your attention.  Since I wasn't at the hospital until dinner time, I'm not sure what happened with Haven today. Aaron agreed to give Haven's medical update at the end of this post.

What a treat!  A friend from church wanted to help us and offered to hire the ladies who clean her house come to clean ours.  (Three weeks without cleaning makes a pretty dirty house, especially when the children stay home all day.)  Today those wonderful ladies showed up around 8 am and flew through our house cleaning everything in sight.  I just have to say that the house looks wonderful!  What a blessing that was!  Instead of cleaning, I spent time with my four big kids.  It was fun to hang out with them, help them with school, get some hugs and kisses, cuddle my little man, and catch up on what has been happening while I've been gone.  We are so thankful that some homeschooling moms help watch the kids during the days that I'm not home with them so that they can keep up with their schoolwork.  It was also nice to take a quick late-afternoon nap before heading back to the hospital to trade places with Aaron.  

Much is changing in our lives over this next week.  Haven will be discharged from the hospital on Saturday following her therapy sessions.  That means she will be able to come home for a day before transitioning to outpatient therapy and Ronald McDonald House.  We are so thankful that we'll be spending the night at home as a family on Saturday.  I am also thankful for our room at Ronald McDonald House (RMH).  It's not the Ritz Carlton, but it will definitely meet our needs while we are here for Haven's therapy sessions during the week.  I'm a little nervous about this first week ahead since it often takes me about a week to get used to a routine.  There are several nice things about staying at RMH.  I'm permitted to have some or all of our older kids stay the night there.  Aaron and I decided that I will not attempt to have them all for the first week.  Although the hospital encourages family members to participate in therapy sessions they also do not want distractions from the important work that is going on.  This is not play time (well, we let Haven think that it is!) this is work.  I need to focus on helping Haven get used to her new therapists, home, and schedule this week.

I took the kids to RMH tonight so they could see the facility.  Kids are so great; everything is an adventure to them.  They are not a bit concerned about anything but being together as a family, thank goodness!  We also learned that we are permitted to turn in our keys on the weekends and go home without the threat of losing our room.  This is a major praise since we were initially told that we'd lose our room if we did not report in every 24 hours.  Our plan is to finish therapy on Fridays and for me to bring Haven home each weekend.  Hooray!  I love that we get a tiny taste of freedom each week.  Four year old Levi has been having a very difficult time understanding what is happening to his family this past month, so I tried to spend much time talking with him today about this new change in our lives.  As I was discussing the exciting news - that we would be having sleepovers at the RMH and he would be spending more time with me - Levi held up his little finger to shush me, interrupted my explanation and very seriously asked if there were chicken nuggets and fries at RMH.  That's my little guy; he's always thinking about his tummy and chicken nuggets (his favorite food)!


Aaron here with a medical update: Haven had another exceptional day of therapy.  The therapists continued to be very pleased with her aggressive progress.  We praise God for this miracle!!  Initially we all (parents and doctors) believed that we could be facing months or years of intense care needs for Haven.  The hospital personnel scratch their heads in amazement at Haven's progress.  Today she had virtually no break time during both hours of her therapy.  That might not sound great until you remember that Haven could only stand for brief moments a week ago.  Today she stood for about 40 minutes at a table to "play" (i.e. be distracted from her standing).  Her one break was because she fell backward into my lap.  Don't worry: the therapist and I had our hands right there to catch her if needed, but to give her the ability to feel the unbalance and correct for it.  Imagine helping a toddler who is just starting to walk--same thing here.  You need to give a safety net, but not do the work for them.
Then in PT, she sat close to Miss J. as she manipulated puzzles and toys to work fine motor skills.  Then Miss J. got her dressed up and we went for a walk all around the perimeter halls of the therapy department.  Haven loved it.
Speech was another success.  Haven made choices, pointed, talked, etc.

Aaron here (still typing).  I chose the verse for today because it makes the clear and simple point that God's blessings are like an overflowing cup.  Far more than the "overflowing" "bad news" has been God's "overflowing" goodness and grace toward us.  We just praise Him for His goodness and faithfulness!

Prayer request:  Please pray that Haven passes her swallow study tomorrow.  We're hoping and praying that we can discontinue thickening all of her liquids and blending her foods.  We are at peace with whatever happens, but it will be much more work to prepare her meals if she continues to need thickened fluids and blended foods.

Also pray that we are able to gather the things we need for RMH quickly and that it would not consume our family time this Saturday.