Drake went for his MRI this morning to see if his cerebral nerve was inhibiting him from swallowing. We knew this was just going to be routine, because he was taking his bottles so well. This evening, I asked the nurse to see if the doctor had the official results as it was getting close to shift change. When she said the doctor would be in shortly to discuss them with us, Annie immediately knew something was wrong. If everything was ok, he would have just told the nurse over the phone. When the doctor entered the room bringing a chair with him, I knew I should prepare myself for a drastic swing in our momentum. It seemed like an eternity before he said a word while he pulled up the images on the computer. He said the results of what they went in there for were normal; however, there has been a substantial change in the images they saw at the end of June. Drake has something called encephalomalacia. Unfortunately, it is just as scary as it sounds. This was caused by the massive amounts of swelling and inflamation his entire body endured, when he got so sick from the infection that nearly killed him. He said a large portion of his brain has dilapidated and is irreparable. What does this mean? He said it is too early to tell how disabled Drake will be. They dont even know whether it is progressing or has stopped. He compared this to someone who has had a stroke; when they lose motor skills, they never come back. Only with Drake, we don't know which ones he will ever have.
We don't really know what to do, other than continue to support our children and keep the faith. There is just such an immeasurable amount of weight on our hearts right now.
Please keep this little guy in your hearts and prayers!
God has shown us why we believe in miracles. He will show us again. Prayers have not and WILL NOT stop for these beautiful babies and ur family.
ReplyDeleteI will keep praying for your family.
ReplyDeleteI am so sorry. Words cannot express what you and your family are going thru. I pray that Drake continues to fight as he has been.
ReplyDeletePrayers are continuing for the Gilstrap family! These precious babies have been through so much in their little lives and God will keep them safe. They are fighters!
ReplyDeleteThese two precious babies are miracles! I have faith God can keep them coming! Praying!
ReplyDeleteMy heart breaks for Drake & for you both! I'm so very sorry! We will continue to pray for Drake & Kennedy daily, as you have become a part of our everyday lives, even though you don't know it. We believe in a miraculous God & we believe His plans for Drake are Kennedy are perfect & will be fulfilled. We can't imagine your emotions or your heavy hearts! Praying peace & comfort!
ReplyDeleteScott & Lori
Praying that our heavenly Father will do a might work in this situation. Drake is already such a miracle - I know God has great plans for him!
ReplyDeletePraying,
The Steiner Family
I am just rebuking the notion that his different abilities will be a hinderance upon his life or that of his family. He is a tough boy and an incredible blessing. He has survived so much more than imaginable and I absolutely believe that he will conquer this too. He may not be able to do a few things as he grows, but I believe he will suprise and bless us all with what he can do as he grows. I encourage you to look at the can-do's and not the cannots--God does not see us for all we cannot do, but what we CANcan do to bring glory to Him! Drake has already brought praise to God and Glorified our Lord! I KNOW CAN AND WILL CONTINUE TO DO SO! prayers of comfort and peace to each of you-God WILL use this for good.
ReplyDeleteI have been following your family's story since Drake was critically ill. Your family has been in my prayers since. I'm so sorry that you got such awful news but all is not lost. The brain is amazing and with lots of early intervention therapy, pathways in the brain may be formed to help compensate for the damage. I am a pediatric occupational therapist who has seen kids with brain damage do amazing things. God bless you all as you cope with this unexpected news.
ReplyDeleteI second what everyone else has said.
ReplyDeleteYou've been a part of my family since Day 1, though you don't know it, and I check on your sweet family everyday.
Drake was born to defy odds, and no disrespect, but doctors sometimes forget to mention the unexplainable miracles that happen everyday. Because, well, because they can't explain it. Drake has already conquered so much and baffled so much science, I think he'll just continue to do that.
I know it's hard to hear the Dr. say things, but try to hear the voice of God or whatever is up there watching over us. There is a plan. And it's a good one.
This kid is going to continue to do amazing things, as are you guys as his parents.
Kennedy is in our prayers as well. Hope she stays uneventful for you as I know your hearts are already heavy with this news of Drake's.
You are so loved.
Me again...I just need to tell you what i just told Teresa and I am sure I am just restating what you know/believe already! --#1: nothing is irreparable for God! #2 being differently abled isn't the same as being sick! Drake is well! #3 there are stroke victims that never present with limitations and many more that live normal lives with minor limitations. I know Drake's case is conquerable!!
ReplyDeleteMy prayer: We lift up sweet drake to you. We know you already have a fantastic plan for this little treasure. We know with everything you are ,and in everything you do, it is for our sake and to help us bless others. Please help us to understand your plan, so that we can help drake and his family do your work. I know Lord you are already using this child to bring awareness to our community about so many things. As you do this work in our lives we thank you--even though we do not understand why. Thank you Lord for holding us when we just want to run, taking us back when we do, and loving us no matter what. In your incredible everlasting sons name we pray. AMEN
Praying still! God has a plan for you and your beautiful family!
ReplyDeleteDrake, you and I both know what you have been through, and don't listen to these doctors latest bad news. The same doctors who said you couldn't go another day without using the restroom, but you showed them up going for over a week before going...
ReplyDeleteYou and I both know that God is the only doctor to listen to, and since he was the one who created you in your mother's womb, made from your mother and father, he can heal you and make you however you are meant to be. He created you with strength to get through these battles you have fought so far and won victoriously, and will continue to give you the strength to keep fighting through life, as each day brings you new challenges that you will conquer!
Drake, don't let these words from the doctors mouth trouble you, but let them give you another chance to show everyone what is inside your heart little man, that you are full of strength, love, and determination, and that NONE OF THIS will stop you from being the man you will become. Stand strong knowing that you are a child of God.
I'm praying for you Annie and Brian, to help your hearts be calm, for God to send you his peace and comforting, so you can know that your precious son is being watched over by the one who made him, and that this is all in his great plan. We may not know why he has gone through these many battles in such a short time on this Earth, but he is being prepared for greatness, from all this growing strong that he has been going through.
Kennedy, keep praying for your brother, and letting him know you love him and will always be by his side through life, and together, NOTHING can stop the two of you! Don't let anybody out there tell you two otherwise, as you two are precious and loved by so many, and God has you on this Earth for a major reason, one that we will know one day.
God, please give comfort and peace to all right now, letting them know you have already seen how this is all going to turn out, and thank you for your love and healing power. Thank you for the miracle you are going to show us once again, proving that we are powerless in life, but strong with you with us.
Heavy hearts be comforted, knowing Drake and Kennedy are going to be okay, and that we are going to see these two continue to grow with time, into the great children they are meant to be.
God bless all reading this blog and be comforted.
Thoughts and prayers are with you in a big way. The little man and his family are fighters. You will endure. Stay strong.
ReplyDeleteI believe in miracles. My prayers will be for a miracle for little man Drake. Also for peace of mind for you that surpasses your own understanding.
ReplyDeleteOur family has been praying for your babies for months now, since we learned of your journey through mutual friends on FB. I remember the day my then-infant son's neurologist gave us "the talk," probably relating some of the same things you were told by your doctor. My son battled for his life against meningitis and suffered a stroke as the result of the infection. I know the devastation, fear, uncertainty, loss that you may be experiencing. I was there. My son is now 2 1/2 and I can't begin to tell you what a joy and a light he is to our family. I was unprepared for what an incredible blessing he has been and continues to be. Let me add my testimony to the previous comments: through Jesus Christ, MIRACLES HAPPEN! Daily even. My son is heavily involved in therapies to maximize his recovery, but I believe 100% that my son, and yours, have an infinite potential. Be strong, and have faith! I look forward to following your blog and watching as God uses your son as an instrument to glorify His greatness, bring others to Christ, deepen your understanding of the meaning and purpose of life, and give you greater joy than you could possibly imagine--as I have experienced myself with my son. Love to you and your babies.
ReplyDeleteI have and will continue to pray for your family daily. I am praying for baby Drake and I am also praying that God grants you comfort in this hard time. Sometimes God's hand steps in to baffle the finest medical minds with his handiwork. Oh yes, how we would love to see the Lord show off through precious Drake! Please know prayers will continue.
ReplyDeleteWe are here for you, love you! Our prayers will prevail!
ReplyDeleteCurtis
I have been following your story for quite a while, I have never written, but have shared your stories with my kids, my husband, and my mom. The brain is a remarkable thing, a little of a silver lining is that he has not learned many things, so he will not miss the things he did not know. The brain has the ability to adopt processes in areas that were not responsible for them. I hope all turns out for you and the kids! I am sure whatever comes your way, you will be able to adapt and persevere! You all have overcome so many obstacles... Good Luck Drake... you the kid!!!!
ReplyDeleteI am praying for all of you as you process this news.
ReplyDeleteMy heart breaks for you all at this difficult news. Like so many others around the world, we will continue to pray for Drake and all his wonderful family. May God grant you all the peace and healing you so desire. Drake has defied enormous odds before and we will trust and pray that he does so again.
ReplyDeleteI have been following your story every day, but have never posted. Although I have never met either of you, I know who you are, my son went to Caldwell. Many thoughts and prayers have been said for your family. As I read the update this morning, I felt I should tell you there is hope. First of all you already know, and have witnessed with God ALL things are possible. He created Drake and Kennedy with a specific purpose and plan for their lives , they are both miracles. As a mom who has a special needs child, I can tell you I know what it feels like to get "bad news". I was told the day after my 2nd son was born that he could not hear, and that statement was confirmed at 2 weeks old. Devastating? Yes my whole world crumbled, but I knew as he grew he would be fine because he had loving parents. But at 1 yr old when he could not sit up, hold his head up, crawl or do anything other than lay around I knew something else was wrong. Long story short i had a Dr. pull "a chair" in to talk to me. I was told after MRI's and tons of testing that he had splotches in his brain, basically parts that never and will never develop. His deafness sure didn't matter at that time. The hope Im telling you about is that with God, prayers, and constant support and love from family, BIG miracles happen! It was a long road, but happy to say my son is almost 14, and can do EVERYTHING that Drs told me he would never do. Drs are amazing and much needed, but they aren't always right, we know a Physician who is never wrong. My prayer is that you both keep Faith and Hope its all any of us have.
ReplyDeleteAs I read this, tears filled my eyes, and my heart dropped. I have twin grandchildren, who were born at 1 lb 2 oz, and 1 lb 8 oz, at 24 weeks, also a boy and a girl. My daughter in law, Michelle has posted several times, and though I have kept up with you miracle babies since the beginning, I have never posted. There were many times the doctors came in and told them devastating news of things that one or the other of them had or would never be able to do. The twins are now 2 1/2 years old and are in wonderful health except for a paralized vocal cord Cade sustained as a result of PDA surgery. That is a little problem compared to some they could have ended up with. I have told countless people who helped us all through those times that the power of prayer and wonderful doctors, nurses, and medical support made their struggle to survive and grow possible. There are many, many people praying for your babies, you, your family, and your medical team. We pray that God be with you through this current challenge, and whatever you may face in the future. May He continue to bless your babies. Amen. Kathy
ReplyDeleteOur thoughts and good wishes are with all four of you. This is hard news. All I can say is that Drake is a lucky little boy to have such loving and strong parents. And, from all appearances, his parents are lucky to have so many people out there pulling for their babies, and offering support in a tough times.
ReplyDeleteMy heart is heavy for you all. We've had doctors pull up a chair to talk with us several times during our children's NICU stay. They aren't trying to relinquish all hope; they are only doing their job. I agree with so many others that God is the only one who knows what is in store for Drake. I discount the notion that this or their early birth was in God's plan. I think that bad things just happen sometimes. The hope is that Drake's brain will be able to create new pathways around the damaged areas through early intervention services. When you are discharged from the NICU, I encourage you to find the best therapists and not just go with the state-run ECI program. Some people get great therapists through ECI; however, I think they don't have the funds to provide families with the amount of therapy required. You may get lucky with them, but I encourage you to check out private therapy in addition to ECI. If you want to contact me about this down the road, I have some tips for getting the services you need (bailey_mg@yahoo.com). As the OT who commented above stated, the brain is amazing, and while the damage may be irreparable, his brain may create new pathways around the damaged area. I will continue to pray for you all. Our pediatrician once told me that our babies (former 24 weekers) chose my husband and I as their parents for a reason. I had never thought of it that way, but I believe it to be true. I have been my children's biggest advocates in getting them the care they need, and I know you two will be great advocates for your babies. Drake and Kennedy chose you two! My thoughts and prayers are with you.
ReplyDeleteStaying strong and supportive for your children is a HUGE blessing for them both. God has a plan. We will all continue to pray for all of you. We have all already been blessed by following the progress of both of your children. Prayers will continue and will not cease.
ReplyDeleteEphesians 3:20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,
ReplyDeleteThe thing I am sure of is that God is not surprised by this. The other thing that I know is that you can never out guess God or premature infants! Having worked with infants and toddlers for 15 years that qualified for ECI, I have seen babies do things that everyone said they would never do. You just keep being the great parents you have been to this point, keep loving him and treating him just like you do his sister. If he starts exhibiting delays, you can address them then but always treat him just like you would any other baby. I have seen babies that had great potential limited by the expectations of those around them. Keep reaching for the Him and He will carry you through!
ReplyDeleteI am so burdened by this news; but I know this....Drake is a fighter who, up until now, has defied all predictions and all odds. He will continue to do so. God chose you and Annie for this journey and to be his parents because He knew you are the ones to do it. Prayers will continue for all of you, especially little Drake, as day by day you continue to walk this journey of faith.
ReplyDeleteHolly Chilek
I believe in miracles and I know that both of these babies were miracles from the start. God has special plans for both of these angels and I am praying and trusting that Drake will pull right on thru this additional bump in the road. Stay strong and know that God is there for all of you. Our prayers continue... Shelley & Mark Cauthen (neighbors on Lake Palestine)
ReplyDeleteLike so many others I have never posted here........... and I debated on it today. But I want you to know that every single weekenda morning I turn on my computer, grab a cup of coffee and browse straight to this blog. I cannot wait to see how Drake and Kennedy are doing........ Mondays are usually my favorite day because I see three days worth of pictures! Today my heart is full of sadness and the tears in my eyes are real. Not because of your news because I am sure that Drake will overcome this - he's such a trooper) I am burdened for the both of you and what you must be feeling right now. I want you both to know that you have become a part of so many of our lives, total strangers, but we are all rooting for you each and every day. Hang in there and know that God is in control........... while we don't understand everything we go through each day, God does. We are all praying behind the scenes -- you have a huge army of prayer warriors and we have your back when things get tough! Hugs and Blessings to you all.......
ReplyDelete~Debbie
call on me in the day of trouble;
I will deliver you, and you will honor me Psalm 50:15
I would highly recommend reading "The Brain That Changes Itself" by Norman Doidge. It's filled with stories about people who have overcome the odds when doctors said they would never recover from injuries and never regain lost function. I think that it's encouraging and will help to show that all things really are possible, even in situations similar to Drake's. Good luck and God bless your family.
ReplyDelete