God's Hands.... part one

Hello Dear Friends,

My name is Danielle.  I am Christian’s mommy. It is a bit funny to be guest starring on my own son’s blog. I wanted to give you an up close picture of the last 40 days. But more so, I want to show you God’s hands through this all. 

On the evening of April 18^th, Kyleigh (Christian’s biggest sissy) had a softball game. Christian would not eat his stage two baby food, which is unusual for him, and was extra fussy; however, he breastfeed fine and went to sleep between 7:30 and 8:00. At around 4:00 am I went to check on him…I stood outside his door for a moment and heard no crying but when I went through the door I heard a low moaning sound…it was Christian. I hurried to his crib and all he could do was look at me with his eyes, his body did not move. I picked him up and his body was limp; I screamed and rushed down the steps to Jack (Christian’s Daddy) yelling at him that there was something wrong. Jack held him as I took his temperature, it was very high. I gave him Tylenol and Motrin, deciding in my head that he was limp due to high fever. I took him back upstairs and was feeding him, he did ok. He fell back asleep and when we woke back up I switched sides for him to eat but he could not suck; he just looked at me and cried softly.  It really hit me then that something was very wrong. I woke up the girls (Kyleigh and Jillian) and quickly ushered them into the car in their pjs; no food, drink, or bathroom. 

 We showed up on our pediatrician’s office doorstep. They saw us that second, the doctor told me to go Texas Children’s Hospital immediately.  Sitting in the ER waiting room was scary and tense; both Jack and I were impatient. We were taken back to a room; the nurse did her quick assessment and realized the severity of the situation; so she got the doctor right away. That doctor decided to get the attending ER doctor. They ran blood, x-ray, and a CT-scan, all of which came back ok but Christian was getting worse by the minute. His heart and respiration rate were alarming, he had not eaten all day, and could barely move or cry. The attending doctor was completely clueless about what was happening to Christian and made it obvious she did not know what was wrong with him. By this time shift change occurred, (GOD’s hand) and there were two attending ER doctors looking into Christian’s case; this new doctor had a fresh perspective.  He ordered an MRI.  At this point friends/family had piled into this tiny ER room to support and pray over Christian (GOD’s hand). The girls were taken home by (GOD’s hand) the Criswell Family…words cannot express our gratitude.

The MRI was supposed to take an hour and a half, it ended up taking over 3 hours; the atmosphere was tense and nervous. They led us back into recovery and at the same time the nurse received orders to intubate him (put a tube down his throat so a machine could breathe for him) however he was breathing on his own(GOD’s hand), it was labored but he was managing.  The attending doctor came into the recovery room and told us Christian had Transverse Myelitis. The lesion was extensive it ran from C3-4 to T5-6. The lesion was on, among other things, the part of the spinal cord that controlled breathing…Christian should not have been able to breathe on his own but he was (GOD’s hand). A team of three critical care doctors came in to explain that 1/3^rd of people  don’t make it, 1/3^rd  partially recover, and  1/3^rd fully recover; they didn’t know which category Christian would fall in. I had been praying for the last nine hours to GOD begging HIM to let me keep C; but it was not till then that I realized how close we were to losing him. This day starts our new normal. 

 I promise to write as much as I can tomorrow to give you more of Christian’s journey and show you GOD’s hand.
~ Danielle

Last Call for T-shirt Pre-orders!

Praise the Lord!  We have received orders for over 40 shirts already!

We will be placing the order for shirts on Monday.   All proceeds of Christian's "Hands & Feet" shirts will go directly to the family next week!  Thank you all so much for your support!

If you attend FBC Crosby, you can also place your order with LeeAnn Lee.

If you have not placed your order, and wish to do so, please email Tara at tbeasley@haoneil.com.

Be Blessed, and Be A Blessing!

T-Shirt Fundraiser...now taking pre-orders!

Fundraising Opportunity!

We are now accepting pre-orders for white t-shirts with the above design.  All profits go directly to the Smith family for Christian's Physical & Occupational therapy. 

What an awesome opportunity to represent the hands and feet of Jesus by giving to rehabilitate Christian's hands and feet!

Ordering information:

$10  S-XL

add $2 for each extra X

Youth sizes also available for $10

(Please specify "Y" in your order YS=Youth Small)

Please send an email toTara tbeasley@haoneil.com, include quantity & sizes.

*Crosby FBC - pre-orders can also be accepted in person by LeeAnn Lee*

Thank you for your support! 

Adjusting to life at home and Testimony of the Lord's Favor!

This weekend, Danielle's mom, "Mim", was in town for a much needed visit.  Mim is so very close with her grandchildren, and it was a blessing to have her here for support and for Kyleigh's birthday party!

Adjusting to life at home without the support of medical teams has been rough, but the Smith's are taking it in stride.  Their faith and perseverance is amazing and the Lord is providing for their needs.

Christian is eating well and his bowels are operating with little to no intervention (PRAISE!!!) but has been waking in the middle of the night often, leaving Danielle very exhausted.

Major Praise report!  Christian is now extending one of his fingers! We are standing and believing that this is just a first step of him regaining mobility!

Per the doctors, the next six months will be a crucial window for his recovery.  The plasmaferesis treatments typically take between 2-6 months to begin repairing the damage done to his nerves.  During this window, Christian must have regular and frequent Physical Therapy and Occupational Therapy, and daily rehab at home.  Danielle has expressed that "being a rehab hospital is really hard".  Let's continue to rally around her and encourage the Smith Family!

Testimony of the Lord's Favor.....
To make a really long story short, Danielle and Jack were sent home from Texas Children's with a plan for at home care.  PT & OT were in place, and grants for Christian's therapy was already in the works.  TCH assured them that everything was in line for a very smooth transition.

Once they got home, Danielle & Jack began to make necessary appointments only to find out that PT and OT for Christian are not covered by insurance, and will be $225 (a 50% discount apparently) each time they visit for therapy.  TCH stressed that therapy should be at least 4 times a week to give Christian the BEST chance of a recovery.  So, $900 a week just for therapy - not including gas, parking, food, and childcare for the other kids.  For any family, $3600 a month would be a major burden.

But we know the Lord, Who is the Provider.

Through a friend, Danielle was introduced to a incredible woman of God who is a Physical therapist.  Leah has been following Christian's journey through this blog and through word of mouth, and met with Christian for the first time on Friday.  She has already been a blessing to the family through not only her profession, but also by her spirit of compassion, encouragement, and through her faith and love of Christ.  Not only that, but she has agreed to provide Christian with his PT treatment for a fraction of what the family would be facing.  The Lord is surely using her as a literal angel on earth to be His hands and feet for this family.  To God be the glory!

Here are a few shots of Leah working with Christian! 

Please continue to be in prayer for the family:
- As they make adjustments to life at home
- As the girls begin to see the differences and adjust to more focused time with Christian
- As Danielle becomes Christians "at-home" rehab facility - give her strength, patience, peace, and confidence
- Pray that the Lord continues to open doors for provision for the family
- Pray for favor at Jack's work place and with the hospital staff
- And of course, please continue to pray that Christian's treatments begin to show undeniable progress of healing and restoration to his body. 

Stay tuned for news of fundraisers for the family.  If you happen to have connections with any companies or individuals that would like get involved with sponsorship of a t-shirt fundraiser, or any other, please contact Tara Weber Beasley at tbeasley@haoneil.com

"Super Christian" is Back at Church!

Dressed in his Super Christian shirt and cape, Christian made his appearance back at church.  What a wonderful gift it was to have him back with all his friends.  Adam was super excited to see Christian too!

Christian was also able to join the prayer circle tonight as women gathered to pray for him.  What a beautiful gift to see God's prayers being answered on so many levels.  God is working miracles and allowing us to see His hand. 

Continue to pray.  God listens!

Guess Who is Coming HOME!!!!!!

Christian is going home today!  Tonight, the Smith family will all be under the same roof and it will be THEIR roof!   What a day of celebration this is for all of them.  Ky and Jillian just may be the happiest of all!

Please take time today to praise God and thank Him for making today possible.  So many times God has protected and saved Christian's life over the past several weeks.  We promised to give Him glory and today is a great day to do that.

Pray for a safe transition home.  Pray for peace as Jack and Danielle care for Christian outside of the hospital.  Pray for their wisdom and endurance.  Continue to pray for complete and total healing of Christian.  God is working.  There are amazing stories of how God has intervened and protected Christian's life.  He is able to do abundantly above and beyond all we can think or imagine.

Praise God from Whom ALL blessings flow!

This is the day the Lord has made.  Let us REJOICE and be Glad in it!

Praise

From Danielle.......I asked to keep him, and he lived. I asked for help, and HIS hands and feet came. I asked for wise doctors and nurses, and I got champions. I asked for a bed, and got a room. I asked for protection, and he was saved(story later). I ask for him to be healed....and he will be healed in Jesus' name.

Pray the Boy Home!!!!!

Danielle's facebook status yesterday says it all..... "The Boy might get to go home this week! 26 days in the hospital is way to long! Poor thing spiked a fever and won't eat, so they have him on IV fluids and IV antibiotic. But it looks like he does not need a blood transfusion! Thanks to everyone who made my girls day special!"

Treatments are finished.  Time to focus on getting strong and coming home!  Please pray for Christian to regain his strength and for him to be released to go home.  Having their entire family under the same roof......HOME..... will be awesome for everyone!

Yesterday was Ky's birthday.  She celebrated with her Sunday School class and again with the family at the hospital.

Thank you for continued support and prayer.  Christian is stretching out his fingers more and more.  This is a huge praise!  When Christian comes home he will begin physical therapy and lots of hard work with focus on regaining full use of his hands and legs.  Our God is ABLE.  Our job is to believe He is able and trust Him as we wait.  

Chemo Treatment Saturday Afternoon

Christian will have his chemo treatment this afternoon.  A doctor, a pheresis nurse, a chemo nurse and Nurse Amanda will all be present.  Please pray for Christian to tolerate the treatment well, to have few if any side effects, and most importantly for the treatment to be effective.

Please pray for Danielle.  She is doing great!  She has strength she knows comes from all of your prayers. 

Pray for Jack and the girls.  Daddy is spending the morning with them at a swim meet.  The girls are certainly ready for the family to all return home.

Please continue to pray for The Criswells who have so graciously taken on the partnership with Jack and Danielle in caring  for the girls.  Please "bless" them as you are able.

Thank you for continued prayers for Christian's complete and total healing!

Answered Prayers and Good News!

In what can be explained no other way than a direct answer to prayers.....Christian has begun to tolerate his plasmapheresis treatments and is having his final treatment today.  Thanks to answered prayers, he will also proceed with the next treatment option which is chemo.  This is a level of chemo which brings risks and side effects ..... but he WILL get to keep his blonde curls!

Another awesome praise is 2 of his fingers are stretching out when he reaches!  This is a much longed for sign of progress!

Today, Christian was able to visit with his friend Adam.  This was a special treat for both of them and their moms!

There is also a possibility of going HOME on Monday!!!!!!  Please pray for wisdom on behalf of doctors, Jack and Danielle as they determine when Christian is ready to come home.

Please continue to pray..... God Listens!

Pressing On

Thank you for prayers for wisdom.  After much prayer, Jack and Danielle have decided along with their doctors to move forward with Christian's plasmapheresis treatment.  He will have treatment tomorrow (Wednesday) and again on Friday. 

Today, the doctors put a new treatment back on the table as a possibility. Please continue to pray for wisdom and direction.


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

Prayers for Wisdom

The treatments C has been getting are not producing a change but they are endangering his life.  The doctors are debating amongst themselves to end treatment. They approached me to get my opinion on the matter. I need wisdom, the doctors need wisdom, then peace about whatever the final decision is...please pray... ~ Danielle

Weekend update and Monday, May 9th Prayers

Thank you for your continued prayers and concern for Christian and his family.  Your commitment to pray and check in with his progress is a life giving gift to the Smith family.  The knowledge people are praying is an invaluable gift.  God is their sustainer and a very present help in time of need.  You are the body reaching out and giving tangible life to their faith. 

Over the weekend, Christian had his 3rd plasmapheresis treatment as well as a blood transfusion.   The plasmapheresis treatment is basically like dialysis.  It is the removal, treatment, and return of (components of) blood plasma from blood circulation.  A blood transfusion is when he received the blood of another individual due to his own hemoglobin count being low.  Today he has his 4th of 6th plasmapheresis treatments.

At this point, there has been no change in his use of hands or legs.  Last week, he was fitted for leg splints due to the stiffness in the legs and feet. The splints will keep his feet in proper position so his tendons and muscles will not shrink.  Christian is also struggling with constipation issues.  Because he is not eating well, he is having difficulty getting his full dose of miralax, which is causing more constipation. Bowel and bladder issues are a direct result of the transverse myelitis. 

It is very difficult on treatment days in particular.   At this point, we are unsure if most of these symptoms are treatment related.  He feels lousy.  Low blood count.  Treatments. Constipation.  You can imagine!

Pray:
1.  "We want to see some movement in Christian's legs.  We want to see his hands uncurl."  His core muscles are not working either- which affects ability to sit up and hold himself up.  Please continue to pray for God to heal Christian completely.
2.  Please pray for Christian to have relief from his constipation struggle.  It is very painful for him and for his parents who want to relieve his pain and are unable to do so.
3.  The girls - Jillian is really having a tough time with seperation from mom and dad.  Please pray for her to have peace.  Ky appears to be doing well.  She is working  really hard to please everyone and help in any way she can.  Please pray she will not take on any more than is needed.  Please continue to pray for and support Mike and Stacie Criswell who are so kindly caring for the girls and offering them stability during this time.
4.  Jack and Danielle- Exodus 17:8-15 tells of the battle against the Amalekites.  As long as Moses held his hands up to God, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning.  When Moses' hands grew tired, Aaron and Hur made it possible for him to sit and they "held his hands up - one on one side, one on the other - so that his hands remained steady" .  The battle was won.  Jack and Danielle are in a battle.  They are weary, tired, and in need of people to "hold their arms up" in prayer and warfare against the enemy who would seek to weaken them during this time.  It is difficult not to question decisions when you must watch your child suffer.  Pray for God to strengthen their faith and resolve.  Pray for God to give them the spiritual, mental, emotional and physical stamina needed to endure with confidence that God is good, God is able and God is trustworthy.  Ask God to surround them both with a very real sense of His presence and peace. 

Quick update: Third treatment in process

Christian is undergoing his third treatment right now. The doctors are exaining that a blood transfusion may be necessary this round. Danielle is currently with Christian and Jack, Ky, and Jillian are headed up to the hospital to spend the day. Please pray for a sucessful treatment for the baby with limited interventions, for good quality family time for all, and the girls especially, as they are dealing with separation anxiety.

God bless, and thank you for praying.

Urgent Prayer Request from Danielle

Christian started his second treatment at 1:15pm today. 

Message from Danielle at 2:15:

NEED PRAYER REQUEST

One side of the port is partially functioning.  It can be flushed but we cannot draw blood out of it.  The doctor thinks that it may be just a positional issue of the tube.  The other port is working as it should.  They are giving medication to try and disolve any clots that maybe be blocking it.  If this is not resolved, then the port will have to be replaced.  (meaning another surgery)  Please pray that this issue resolves on its own.

Danielle

Update: Rough Night Wednesday, Praying for Sucessful Treatment Today

Last night, Christian began vomiting, spiked a fever of 103.2, and a rash appeared, all of which are potential side effects of the Plasmapheresis treatment.  The nursed monitored him throughout the night.

This morning, the port in Christian's leg - where he receives his treatment - showed minor bleeding and he still has fever, now at 100.7.  The nurses are fitting Christian with leg splints.  At this time, they are still planning to administer the second round of Plasmapheresis sometime today. 

God is in control.  His ways are perfect.  He designs and orders our steps to cross paths with people everyday that can bless us and be there in our very time of need.  From a spectators view, that is happening with the Smith family - and its beautiful. 

Thank you to all the incredibly special people in their lives who have not only stepped in to assist in every way, but have allowed the Lord to use them for divine appointments. 

What a blessing that Danielle has a dear friend with her today that, through personal experiences, knows the ins and outs of Texas Children's Hospital.  She has been able to calm her fears while seeing some of these side effects appear.  Danielle and Jack have been so strong, and it is a tremendous blessing and encouragement to have someone with them that has been there.  How awesome is it that this friend was able to be there at this particular time.  God is in control!

Thank you Lord for every blessing!  We will stand on Your Word and Your Promises!

PRAYER REQUESTS
- Christian to remain healthy enough to receive his second treatment
- While in treatment, for his Blood Pressure and Heart Rate remain at a healthy level
- For health and protection against any sickness for all the family, friends, doctors, and medical personnel coming in contact with Christian.
- For the Ky & Jillian, please pray that they continue to thrive while being loved on by family & friends while out of their normal routine.
- For Jack while he manages work, home, hospital visits, keeping his family closely connected, and for safe traveling throughout it all.
-  For Danielle, as she manages, monitors, and cares for Christian at the hospital.  For her heart, her health, and for her spirits to remain high and focused.

Today, on the National Day of Prayer, please help us spread the word.

Praises and Prayers for the first day of new treatment

Christian began his plasmapheresis treatment today.  It began with a surgical procedure to add a Port in his leg, rather than his chest.  Danielle, Jack and Christian spent most of the day in a Dialysis facility receiving Christian's treatment.  He was blood levels were checked frequently to insure that he was tolerating the procedure.  He was able to complete the entire treatment, but his Blood Pressure dropped and Heart Rate increased.  The medical team found that his calcium level also dropped, so they scheduled another infusion of calcium to regain the appropriate levels.  Right now, he is being monitored, and will be tested soon to see if yet another infusion will be necessary following today's plasmapheresis. 

After all is stabilized from today's treatments. they will wait 48 hours to begin the second of five treatments. 

Praise Report!!! 
After packing up their hospital room and preparing for another week in the PICU, the doctor allowed them to return to a private room after each treatment.  This is HUGE for Danielle and the family because it means that the sisters can still visit, showers and restroom facilities are close by, and best of all, Danielle can stay the night in the room with Christian. 

We are thankful for every blessing!

Prayer Requests:
- For Christian to maintain healthily blood pressure and heart rates during and following his treatments
- For any infusions necessary be tolerated perfectly
- For rest, peace, and health for the entire Smith Family

Plasmapheresis Prayer Please

It is a little after 5:00 pm and Christian is undergoing his first Plasmapheresis treatment.  He is having some difficulty tolerating the treatment.  His blood pressure is dropping.   The doctors are monitoring him throughout.  Jack and Danielle have asked that we pray for Christian now and over the next several hours.  Will update again when the treatment is over.

PRAISE REPORT...... YIPPEE!

Tuesday, May 3rd has held some stressful moments but is turning out to be a day of God's blessings!  CHRISTIAN IS DOING WELL after his MRI and surgical procedure.  Mom and dad survived as well. 

Then, moments ago, the doctors said there was NO REASON FOR CHRISTIAN TO HAVE TO BE IN THE PICU for the treatment.  So, Jack and Danielle are now unpacking and setting up camp back in the same room!  This was a welcome "surprise" gift from God today.

Jack and Danielle send this message:

"It has certainly been difficult to endure all of this.  However, Jesus has been right here with us supplying us with dear friends and limitless support.   God has placed a nurse with us whose sister has transverse myelitis and she has great knowledge and contacts she has shared.  Dr. Lotze has pulled strings to get us back to the 10th floor...... Jesus is HERE. We can see Him and feel Him."

Ephesians 3:20-21 says,

"God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.

   Glory to God in the church!
   Glory to God in the Messiah, in Jesus!
   Glory down all the generations!
   Glory through all millennia! Oh, yes! "

Trusting that God is able and waiting with anticipation to see what He chooses to do next!

Christian is in MRI and then Surgery

Please pray for Christian as he is in for his MRI and then he will have the surgical procedure to put in the port for treatment.  This process will take quite a while.   Pray for Jack and Danielle as they wait.  The plan is for the treatment to begin today as well.  Will update later today.

A Fight to the Finish - Ephesians 6
God is strong, and he wants you strong. So take everything the Master has set out for you, well-made weapons of the best materials. And put them to use so you will be able to stand up to everything the Devil throws your way. This is no afternoon athletic contest that we'll walk away from and forget about in a coup...le of hours. This is for keeps, a life-or-death fight to the finish against the Devil and all his angels. Be prepared. You're up against far more than you can handle on your own. Take all the help you can get, every weapon God has issued, so that when it's all over but the shouting you'll still be on your feet. Truth, righteousness, peace, faith, and salvation are more than words. Learn how to apply them. You'll need them throughout your life. God's Word is an indispensable weapon. In the same way, prayer is essential in this ongoing warfare. Pray hard and long.

Heading back to PICU

From Danielle, "Heading back to the PICU for the next two weeks....please pray this is a hard place to be....no bathroom.showers.food or drinks.visitors are limited and our girls are not allowed.....no beds just two small hard chairs for parents...agh...this is too much sometimes...feeling overwhelmed..."

Christian's surgery for the port was moved to tomorrow morning.  After the surgery he will be back in PICU for the duration of the treatment.  They were not aware or expecting to move back to PICU.  Please pray for endurance, encouragement and for the girls.  As always, protection and healing for Christian.

Plasmapheresis, Port, and Prayer

This morning doctors explained Christian will need a surgical procedure to put in a port in order to receive the plasmapheresis treatment.  This was a bit of a surprise to Danielle.  He will not be able to eat/drink for several hours and this presents some challenges.  She anticipates him to be in surgery sometime late afternoon or early evening.

Please pray for Christian's comfort and protection.  The plasmapheresis treatment will most likely begin tomorrow.  Please pray for success with this treatment.  There have not been any changes in Christian over the past several days.  The hope is this treatment will bring the much prayed for improvements.

Thank you for your continued support and encouragement of the Smith Family.  

"Those who wait on the Lord....shall walk and not faint."  Isaiah 40:31