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Gage
Ramsey |
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The Story Of Baby Gage
Rochelle and Marc Ramsey anxiously awaited the birth of their second son Gage Riley. He was welcomed with open arms by his 8 year old brother Austin and loving grandparents, aunts, uncles and cousins. Gage was born on November 29, 1999, at 37 weeks gestation, 3 weeks prior to his actual due date. Rochelle's pregnancy was complicated by pre-term labor at 26 weeks, which led to bed rest and at 33 weeks she started the medication Brethine to stop pre-term contractions. Subsequently, Rochelle was forced to refrain from working as a Registered Nurse.
At 1 month of age, Gage experienced repeated rhythmic motions in his left arm and leg. This began their journey on the rocky path the family now follows. Many tests were done resulting in a diagnosis of reflux. They were told his pain and discomfort from reflux could mimic "seizure like" activity in infants. A gastric specialist treated Gage with medication and at 8 weeks of age, during a hospital procedure, seizure activity was noticed. He was officially diagnosed by a neurologist with a seizure disorder.
Rochelle and Marc along with a team of specialists began to explore the unknown cause of the seizures. Even after extensive testing and procedures, no cause could be found. Many medications were tried with no success at controlling the seizures.
The small milestones Gage fought to achieve since birth began to diminish and have not been regained. The family set forth on an expansive search to find answers that led them to Children's Mercy Hospital in Kansas City, Missouri, where a final diagnosis of Infantile Spasms was discovered. At one point Gage was having over 100 seizures a day. Medications were altered and included one not available in the United States. This past July , they sought help from the Mayo Clinic and started the ketogenic diet with favorable results. Gage continues to suffer almost daily from seizures and developmental regression, secondary to Infantile Spasms. Although his seizures have been reduced, this will be a life long battle for Gage and his family. They continue to pray for a miracle hoping for some normalcy in their son's life.
A second diagnosis now confirms a lack of myelin in the brain due to a probable progressive brain disease, type unspecified.
Updates
in reverse order
-- August 5, 2008 --
His Mom and myself, His Nana , drove to Omaha to spend the day with Gage at Children's hospital where he has been for 2 weeks. He is in respitory failure and required being placed on a vent. He was doing well with the sprinting,( that is taking him off the vent for a period of time and then putting him back on to give his little body a break from the effort it takes for him to breathe.)
He got to take a shower, I put Dad's cologne in his hair to make him smell really good. He got to stroll out side to their outdoor courtyard on 2nd floor to be in the shade and feel the wind blow on his face and also played an imaginary game from his chair by throwing a fast ball with the support of my arm supporting his arm and then just a flick of the wrist on the count of 3.. And He struck the batter out. Hurray!!!!
We then went and bought popcorn and he carried my enclosed bag in his arm across his chest ever so kindly for me till we got back into our room and you could see reflected in his eyes how proud he was to be able to do that . He would move his little arm just a little bit so that everyone who asked or said hi to him would see that he was able to carry the popcorn.
We then went back to his room where he remained reclined in his chair with comforts of beanie bags and eggcrates etc. To just rest a bit before being moved back into his bed. I told his momma if people would only watch very carefully they would see him communicate with slight movements of his hands,fingers, eyes and eyebrows. But you have to watch very closely.
So he had a very good day.
He did go for a cat scan to check his lower left lung for dead tissue or infection. They are not quite sure because it remains collapsed. But he was very brave through the ordeal and Mom made sure that an egg crate supported him comfortably while laying on the table for the scan. They injected die into his veins and I have not heard back on that report as of yet. I will keep you updated as to his diagnosis on the lung issue. And he loved the elevator ride. It tickles your tummy, you know? LOL!! His eyes would get very big when we would go up or down in it to the different floors.
I also would ask that you all would join me in this specific need at this time.
Apria who is the main provider for Gage's medical equipment have declined to provide him with a vent so that he may return home. So he remains in the hospital until a provider is found and nurses are in place to help care for him.
Please agree with me in prayer that this issue will be resolved and he will indeed be able to return home and also that God will send many RN's to help provide 24 hour nursing care so that this precious little boy can return home to his smells and toys and be closer to all who love him. "Thank you Father for the loving care you are providing for Gage at this time and we come boldly to the throne in the name of Jesus to make our requests know to you concerning Gage and all his needs.. In Jesus name we pray. Amen!!"
Gage is very happy at Children's and does get lots of attention from the nurses. But as Dorothy said in the Wizard of Oz. "There's no place like home', as she clicked her heals and believed with all of her heart!!! .
Thank you for your continued Prayers.
-- April 21, 2005 --
Gage went home yesterday at around 4:00pm.
Emergency Surgery for Gage. God mean't it for good!!!!!
They removed half of the rod in his back and put in donor bone to strengthen the area they will need to put the top half in but while they were in there they did his other side too, the one that would not hold during the last surger, which left him with only one rod being able to hold during that surgery, and then in 6 months they will go back in and put in two rods.
So you see it was a good thing. When they go in next time they will put in the rod that he could not get to hold and Gage will then have 2 rods to brace him instead of just the one that he might have had .
Also his surgery was done at 8 at night on Monday night and it went really well .No blood loss. His parents got to be with him in intensive care at midnight. When they saw him and we (His papa and me) were right there in the waiting area, his dad came out and said he was alert and looking around and breathing around the vent ( which was on for only 1/2 hour after we left) and he really did not look anything like the last time. No drain tube either. He was dismissed from the hospital yesterday on tylenol for pain, and left at 4pm but first had to visit a new friend named Khloe who is 8 months old and had a tumor removed in her brain and it is cancer so please pray for God's grace for her mommy and daddy and for healing for this precious little girl. .
Thank you Lord!!! Praise be to God for His tender mercies with Gage. Amen.
So you see what we often times see as a bad thing, God means it for Good!!!!!!!!!
Keep Your FAITH and remember stories like Gage's.
In this world our Faith is very often tested and it is very hard to stay strong in the Lord. And believe me I threw a mighty fit when I knew that Gage had to have emergency surgery. But I learned another lesson and now have another testimony and also another phrase to witness with.
GOD MEAN'T IT FOR GOOD!!!!! And you are right, I did not just make that up I read it while waiting in the waiting room and praying and questioning and boom there it was in print for me to read and then all of the events happened to let me KNOW what it means. Amen?!!!
-- April 11, 2005 --
Thank you to all of you whom held Gage in prayer during his surgery this past Monday.
Gage spent the night in the hospital the night before antcipating his surgery to be at 7 the following morning.
We (My youngest daughter, who flew in from D.C.) my husband and myself and Gage's older brother Austin arrived at the hospital at 6:30 in the morning so we could spend time with him before his scheduled surgery. His surgery was done at Childrens' Mercy in Kansas City. a 2 hour drive for us.
When we arrived, The Dr. came in and said that it might not take place because there was not an available room in the intesive care unit. But that he had not given up hope and was making calls.
We all circled and prayed that if it was to be at this time then God would make it so. All things happen in God's time. Then they came in and said that Dr. Price had managed to make a room for Gage in the intensive care unit and that the surgery was on. It was 12:30 or so when they started on the actual operation.
The Doctor said that The Angels must have been with them to get the room.
The surgery was completed in 6 hours. It was about 8:00 before his mom and dad to get to see him. The Surgeon was only able to get one rod inserted in his back, the other would not hold and kept pulling out because of Gage's soft bones. He hopes that the one rod will hold that is in place now and that he acheived some correction of little Gage's spine.
Now for the miracles. There was a strong possibility that little Gage would be on a ventilator after his surgery for the rest of his life because they just did not know how things would turn out.
Gage was on the vent but after only 12 hours and Gage was off of it and breathing on his own.
He was out of intensive care within 36 hours and was released from the hospital to come home once again to be with all of us who love him on Sat at 5:30 p.m.. Praise God and Halleluyah!!!!!!!
His pain level has not been too bad, except for right after the surgery when we saw him because he had been on his stomach and his face down for 6 hours , His face was extremely swollen and so was his tongue. So much so that he could not put it back in his mouth and his lips looked like they had way tooo much collogen in them . He had swelling around his eyes and his cheeks were puffy. He looked pretty bad.
I believe Rochelle His mom took pictures of everything.
Gage is a link to God's love here on earth and I believe that God does not make mistakes and he has a purpose and a plan for Gage's life so once again He has returned him to us to love and touch those people he is to touch.
I ask you all now to join with me in praying for these specific needs for little Gage.
"Dear Heavenly Father, We just thank you for all of your tender mercies and for the miracles that you have and continue to do for little Gage. We come to you now asking that you Lay Your mighty Hand on Little Gage's spine and are believing that the rod will become strong as iron and that it will be anchored in bone that has become like concrete. We also are believing that His little spine will be corrected even more then the doctors could ever imagine and that His healing will be rapid. We are believing all of things in Jesus precious name and we just Thank you Lord for all that You do and have done for all of Your children here on earth. In Jesus name we pray. Amen!!!!!!"
Gage will go back a week from Wed. for another xray and at that time we will probably see what amount of correction that was achieved. The doctor told Gage's mom and dad that he really did not expect Gage to do as well as he did through this surgery and that he really thought that he would have a "Sunami"(sp) on his hands. I just smiled on the inside at this bit of speculation because after all Gage was committed into the hands of His Father and all of the Angels before His surgery and sent off with all of our love and there were a lot of people there to kiss him and lay hands on him and to pray continually throughout his surgery. Just trust in The Lord our God with all your heart and your mind and know that all things are possible through God who strengthens us. Amen??????
Thank you again for your prayers and continued prayers for Gage and his family and also for all of the children and their families who are going through trials right now that they might find comfort in our Lord and Savior Jesus Christ.
-- April 5, 2005 --
Gage is 5. His surgery lasted about 6 hrs. We arrived at he hospital at 6:30 and left at 9:15. It was a long and tiring day and very exhausting emotionally as well as physically. But he made it through the surgery although they were only able to insert on rod and do not know if they received a 50 per cent correction or not. He tried and tried to get the other rod in but his bones are soft and would not allow the other one to be attached. We just know that All things work for Good for those who Trust and Believe in our precious Lord Jesus Christ. So I am believing that He will get better correction than the doctors believe and another miracle will happen for our precious little guy. Amen.
Thank you for your prayers and he needs them still . He is ICU.
-- April 3, 2005 --
Gage is having surgery in the morning at Children's Hospital in Kansas City(,that is Monday at 7:30 )for his scoliosis. It is a very major surgery so please pray for him and a very dangerous one for him.
Please join in praying with me for our precious little gift from God.
I am praying right now in the name of Jesus that everything will go well with the surgery and Gage will not be in pain and his healing time will be shortened. and that the doctor's hands will be guided by the Angels and they will be able to correct his spinal curve. I also am placing little Gage in the care of His Father and praying for His tender mercies for his mom and dad that they would be granted His Grace to go through yet another surgery with this special little Angel that God has entrusted to us. I am believing right now in the name of Jesus that the surgery will go well and Gage will again come back home to touch the lives of those yet to be touched. In Jesus' precious name I pray. Amen!!!!!!!!
Thank you for your prayers
-- November 2004 --
Happy Birthday Gage!
-- October 4, 2004 --
Gage Made it through the surgery and actually is doing very well. Thanks to all of your prayers on his behalf. He was off the vent and breathing on his own by 5 or so that same day of surgery, and now will just have to stay in PICU for 6 days until the stoma heals and they switch out the trach and then a couple days we hope in the hospital section. And of course his mom and dad will never leave his side for long except for when I am there or his Aunt or His papa or his other Grandmother. But papa and his other grandma are not comfortable being in there by themselves so it falls to my oldest daughter and myself to give them a break.
Gage is breathing so much better now and will now be able to do more. His O2 rate had dropped to a real low 49 one night and most of the time it ran in the 80's. No wonder He would be sooooo wiped out all the time. We did not know this until they put an O2 monitor on him and monitored him at home. We knew he was having difficulty breathing but never thought of this and no doctors suggested this to us. The trach actually is going to get him stronger and built up for scoli surgery in May.
Sunday I talked with his mother Rochelle and she said he had a wonderful night, slept from 10 till 6 and his O2 ran 95 percent all night. We are thrilled. He is coughing the stuff out of his trach now so that is good and then they are only suctioning him once every 4 hours or so.
Gage is such a beautiful little boy and is such a joy to be around. He is very expressive with his eyes and they are very big right now because I believe he is on an oxygen high LOL.
I am headed that way today to stay there from noon until 7 so that his mom and dad may have some breaks. And also it is hard for me to stay away too.
Thank you all for your wonderful prayers and words of encouragement.
They have even been able to sleep in the Ronald McDonald room at the hospital, and that is an answer to prayer too. God is Good!!!!!
God Bless all of you with his wonderful Mercy and Joy!!!
Love In Christ
-- October 1, 2004 --
God Bless You!!!
Gage was in his hospital gown waiting for the surgery and the doctor never came. They forgot to schedule the doctor. Thank you for your prayers because I know something was not right and God interveined to stop it. It is sceduled for this morning at 9 am.
So please this morning, pray that all the doctors and surgeons will be guided by the Angels and that The Precious Healing Spirit of our Lord Jesus be with Gage and that Our Lord would bless us all with his tender mercies and His wonderful Grace to Just Trust that He is holding Gage in His hands this morning.Amen.
Rochelle, Gage's mom was very upset when this happened and was crying and unsure because she had said that if they had a flat or anything then she knew they should not do the surgery. She is very afraid for Gage's safety during this surgery. So she did not know what to do!!!!!! We prayed that God would give her and Marc the wisdom that they needed in making this decision. But there really is not alternative. Little Gage continually ,has to be moved and suctioned in order to breathe.
Again, Thank you for remembering Gage in prayer today and also his mom and dad and brother and also His Family which is us too.
Gage was happy when we left the hospital, We all went to Chile's and ate and had a party. Added a little bit of levity to the situation:)
I will keep you informed.
Plus you all should know that God placed a 5 month old baby in my path yesterday who had a feeding tube like Gage and a trach that Gage will soon have. And he was a very happy little baby.
I believe Gage will be much stronger this morning than he would have been yesterday towards the end of the day. So that is why God's hand was in the postponing of the surgery.
-- May 2004 --
Gage is now 4 years old and celebrated his birthday on November 29,2003.
He received his new seating system and his first wheel chair and is now much more comfortable.
His scoliosis is progressing rapidly and is now in the 60 % bracket for the curviture.. The seating system is hoped to help hault the progression. Surgery is necessary to correct the curve should it reach 75%. Usually this is seen in much older children around the age of 12. The Hope is "to buy Gage some time" before surgery is the only answer to stop collapsed lungs, and Gage is not a very good candidate for surgery. He does not react the same as other children when it comes to anesthesia or pain thus he simply quits breathing, probably choosing not to breathe anymore.
He is still being tube fed but introduced to different tastes. His swallowing is not the norm thus the threat of aspiration exist with taking food or drink by mouth. His favorite stimulus is gummy worms in which we place them in the side of his cheek or mouth and then try to encourage him to use his tongue to push it out of mouth, and or encourage him to bit down on them for a chewing motion and then of course swallow the sweetness.
Gage can sign a few words with his right arm, and loves to be played with and encouraged to do things with that arm.
At times he looks at you but we do not believe he can see, but we do know that he can hear. He communicates with the raise of his eyebrows or his right arm.
The helping Angels in his life right now are his respite care givers, Lisa and Shirley as well as family members; Great Grandma, Mimi, Nana and of course Mom and Dad and Big brother Austin. Gage is surrounded by people whom love him immensely.
Gage still makes twice a month trips to Childrens' Mercy Hospital in Kansas City where he receives therapy. He especially loves Jennifer and the pool. And of course the routine Doctors visits are must too.These doctors include, His neurologist, etc.
His favorite audio book is Horton Hears the Who narrated by Dustin Hoffman. He listens to it while in his chair holding his soft stuffed puppy dog and receiving his tube feeding.
He loves to have his teeth brushed with his spinning tooth brush and spits out the toothpaste really good!!
Post script: July 25,2004
The Orthopedic surgeon says now is the time that a decision has to be made regarding surgery. Please pray for help and guidance.
-- September 2002 --
Gage will be three years old on Nov. 29th, 2002
Gage's case appears to be "unique." In all of his travels to hospitals and in investigations with doctors and parents over the Internet, we have encountered no child with exactly the same history of afflictions as Gage. Doctors have found no evidence of brain damage, but believe his body may not be manufacturing a specific chemical or enzyme which prevents the formation of myelin in his brain.
The hope is that the enzyme or chemical that is missing would be identified and somehow provided; that Gage could move from a degenerative condition to a regenerative one.
The following is a summary of Gage's medical history, that has occurred since the release of "Hope For A Miracle" CD:
Gage lost his ability to eat and suck a bottle when he was just under one year of age. Before a permanent feeding tube could be surgically placed, he had a feeding tube inserted through his nose and into his stomach off and on for several months. In February 2001 at Children's Mercy Hospital in Kansas City, Kansas, Gage underwent a Total Fundoplication and Gastrostomy. This surgery involved wrapping his stomach to decrease the opening size to reduce reflux and adding a permanent feeding tube to the stomach, called a Mickey Button. Gage is unable to eat or drink by mouth.
On X-mas eve 2001, Gage underwent emergency surgery at Children's Mercy Hospital in Kansas City. This was a Diaphragmatic Hernia repair. His colon moved through an opening in his diaphragm into his chest cavity collapsing his left lung and was adhered to his esophagus. The doctors informed us that it was a very difficult surgery and Gage was not a good candidate. Santa did not forget to visit Gage. He left him many nice things at home and visited him in the ICU and presented him with lots of toys. Gage returned home on New year's Day, but only for a short time and 5 days later he was admitted to St. Elizabeth's Hospital in Lincoln, Ne. with pneumonia secondary to RSV virus. He had contracted this while in the hospital for his surgery.
On July 29, 2002 another surgery was performed at Children's in Kansas City due to the continued seizures which medication has failed to control. A VNS implant was inserted. This stands for Vagus Nerve Stimulator that operates like a pacemaker for the brain. It was implanted in his left chest and a wire is attached to the Vagus Nerve in the neck. It releases an electrical stimulation to the vagas nerve every 3 min. for 30 sec. The VNS has proven to be effective with seizure control in some children, to various degrees.
Gage will finally get a seating system which will enable him to be in a seated position and will also help to support him while he sleeps. He will be traveling to Denver, Colorado, on October 6th, 2002, where they will mold a seating orthosis and a recumbent orthosis for proper body alignment to aid in treating his scoliosis that he has now developed because of his disease. And upon his return home he will begin Botox treatments to both of his lower extremities to help reduce his muscle tone, increase his sitting ability, and prevent further muscle contractures.
Also on its way is Gage's first wheelchair. The new seating device will fit in that chair.
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