Rainbows

I know I am  way over due to update the blog.  Forgive me? There is so much to share. After returning home from the hospital it was harder getting back into the swing of things than the last time. It was shocking to have to go back into the hospital. C, the girls, and I are a bit burnt out! We have an appointment to see Doc. Lotze and Doc. Shwaube this Wednesday. I have two pages of questions already typed up for them! We are ready for this appointment. C had an episode a few weeks back where he was suddenly unresponsive for over 3 minutes. The girls and I were shaken to our core. This signals that something is occurring in C’s brain. The Bell’s Palsy of the face (drooping of the right side of his face) and pstosis of the eyes (drooping eyelids) have also indicated this. However, the MRI shows a healthy brain. This truly is befuddling. Please be praying that Doc. Lotze will know how to proceed with these contradictions. I am very interested to hear his expertise on C’s new MRI. Currently C has come down with bronchitis. The reason why this is a bit concerning is because he has a weak cough and sneeze; which makes him very susceptible to pneumonia.

OK OK…done with all Debi Downer junk…..

C has made amazing strides since coming home from the hospital! Christian Daniel is ARMY CRAWLING!!!  We are so proud of him, we beam! I wish each and every one of you could see him in action! He truly is inspiring! His perseverance and determination is a blessing to watch. One statement has been repeated over and over by C’s doctors, therapists, and supporters,”I expected worse from what I read (from either C’s medical charts or blog)”. After hearing this so much, I created a theory.  WARNING!! I am putting a disclaimer on this theory though; Christian is my son, so my opinion is SLIGHTY bias! HaHa! C has a way of wearing Transverse Myelitis that makes you believe anything is possible.  Who Christian is to the core out shines his TM, his disabilities. And I believe these things will always play second fiddle to this astonishing little guy! What the fallout is from his TM is written in black and white but C is more than that diagnosis. He keeps getting knocked down but he comes back every time hungry to adapt and overcome, adapt and overcome. C doesn’t just find a way to get what he wants, he MAKES a way. I pray that one day; I too, can rise to life’s challenges with such finesse.

I can see God’s promises ringing true in our daily life. The provisions he has provided, make every step not only possible but hopeful.  God is who is taking every step with C, cheering him on and reminding him all things are possible THRU HIM! God is providing C with his super hero endurance and strength. God is in all of C’s therapists, who treat and most importantly love him like their own child, instead of a client. God is in our church family, Crosby First Baptist, who when we got too tired to walk picked us up and carried us…and still does this very moment. God’s hands and feet are moving through every prayer, hug, donation, meal made, coffee break, phone call taken and made, care package given but mostly ya’lls presence alone have made the greatest impact in our life. With all that we are….Thank-You.

               

TUESDAYS in JULY! Chili's in Humble, TX gets on board!

~ UPDATE from Tara ~

Great News for Christian!

Chili's in Humble, TX has joined the cause to help raise funds for Christian's recovery!

Every Tuesday in July - from open to close - for every person who brings in the flyer (see link below), Chili's will donate 10% of all sales to Christian's benefit !  Praise the Lord!

Who doesn't love Chilis?  Please download the file below, print & email them out, and lets pack out Humble Chili's every Tuesday in July!

http://www.docstoc.com/docs/document-preview.aspx?doc_id=83163300

The participating Chili's is located on the corner of HWY 59 & FM 1960, across from Deerbrook Mall.

Come hungry!

All the King's Horses and All the King's Men would not put Christian back together again...

 Christian is home from the hospital after a flare up of the original TM assault. He responded well to the treatment and didn’t need any cathing after 12 hours of the first steroid IV infusion. They had a MRI study done of both the brain and spinal cord. It confirmed that no new lesions were present. However, it did show atrophy of the spinal cord; which means the spinal cord did not regenerate from the damage done. While in the hospital the FIRST time, Doctor Lotze, explained it to me like this….C’s spinal cord was hit hard by a storm, damaging it.  But the body has electricians and they would go rewire the system. Electricians are over worked and underpaid; so often times they show up late and work slow. He told me to be patient and not give up hope. That is why he gave C the six month window of opportunity to improve…he was expecting the cavalry to come through in the end.  Fast forward to THIS hospital stay and his most recent MRI. The attending neurological doctor told me that C’s condition would not improve because his body did not fix the damage done by TM, that his spinal cord tissue had now died. As I type these words, vomit came into my throat and tears welled in my eyes. I refuse to hear that. I need to hear those words from Doctor Lotze, unfortunately he is out of town for the next two weeks. So I am impatiently waiting but I have already decided how I will respond if he tells me the same thing.  I know there is always HOPE in Jesus, our Healer but there comes a time to deal with what is right in front of you and pray for something better. This will be my response. I hope everyone can respect that. C will still benefit from Physical and Occupational therapy. That will re-strengthen what was weakened, and  re-teach what was forgotten, and GOD WILLING re-gain what was lost. This will also be his time to learn how to accomplish tasks as a boy who is paralyzed and had limited use of his fingers. We will also set goals; so C can plow right through them. He is determined.  And if by GOD’s grace his legs move, his therapists and I will make sure they are ready! Thank-You so much for your prayers, and continued support. We (Jack and I) are in this for the long haul. We will exhaust every possibility and not stop until C’s potential is maxed out; giving him every chance, every opportunity of a life uninterrupted by Transverse Myelitis. Please keep praying for Christian. We believe in miracles.

Difficult Days

Yesterday, Christian was re-admitted to Texas Children's Hospital.  He began a 5 day course of IV Steroids and thankfully is responding to the steroid therapy.  He is expected to go home within the 5 day time period.  This is the good news!

Christian is experiencing an inflamation flare up on his spinal cord. This is uncommon, but the fact it is happening is an indication he will likely continue to have similiar flare ups in the future.  This is extremely rare and very disappointing.  X-rays indicate his spine has begun to twist due to muscle spasms in his trunk.  Today, Jack and Danielle were also informed Christian has a condition called Chiari 1 malformation.  This is a condition in which brain tissue protrudes into the spinal canal. 

As you can imagine, this is alot to absorb.  Please pray for Jack and Danielle to experience God's peace and that God will grant them strength and endurance for each day.  Continue to pray for God's miraculous healing hands to touch Christian's body and restore his health. 

Heading to Hospital

Christian is still having trouble with urination issues.  He is not voiding on his own at all.  He was able to do so when he left the hospital.  Dr. Lotze has asked Danielle to bring Christian to the hospital.  Please be in prayer for parents and doctors to have wisdom.  Please pray for Christian's body to respond and for him to be healed.

Update on Christian - Every cloud has a silver lining!

Christian continues to battle an intermittent fever, which has been one of his symptoms since the onset of the TM.  Most recently, he has contracted a rash on his chest that is turning into sores in some places.  The Doctors are perplexed by the fever & rash.  His blood work was analyzed last week, and concluded that his hemoglobin, hemadocrit, and his white blood count are all low.  They will be re-working his blood this coming week to see if another blood transfusion is needed.  While he is eating table food well, his suction is weak, which has lead to Danielle syringe feeding him his milk instead of being able to nurse him.

As of yesterday, Christian is struggling with voiding his urine, which is requiring cathetarition  This is a mountain that Christian had already conquered since being home, so this regression is both concerning and disheartening to the family - especially with the other symptoms occurring.  Please be in prayer for Christian, his family, and his team of doctors as they monitor his course and symptoms.  Danielle is waiting on a phone call from the lead doctor that treated C at Texas Children's to order a plan of action if necessary.


The Silver Lining!
By the Grace of God and with the help of the loving hands of Christians's PT angel Leah, Christian's left pointer finger & thumb are almost at 100% full function!  His left pinky finger is "firing" intermittently, but movement is a blessing and a sign of good things to come!  His left thigh also seems to be showing slight intermittent firing, or movement signaled from the brain.  This is the first sign of reaction in his lower region - Praise the Lord for He has began a good work in this baby boy!  There is still no change in his right hand, but we are counting our blessings for the signs on the left side. 

Also a blessing!  The Smith's were blessed with a kid cart, a standing machine, and some body bracing

On Memorial Day, Christian & his big sisters spent some time at a local pool.

Hands & Feet Shirts are In!

Thank you to everyone who pre-purchased a Hands & Feet t-shirt!  They will be mailed out or delivered to you this week.  Ms. Seale at FBC is your contact person for Crosby FBC.

The pre-sale was a huge success, and 75 shirts were sold!  Praise the Lord!  That is 4 weeks of therapy for Christian! 

If you haven't already ordered your shirt, and are interested, please send an email to Tara at tbeasley@haoneil.com.  We will continue taking orders, and will send to the printing company in 50 shirt intervals.