So, today we traveled to Monroe to see Jeremiah's Neurologist to follow up from all the tests he did on the 4th. The appointment did not at all go as I had hoped or even as I feared. I feel like I have been kicked in the stomach. The news is dreadful. The doctor said that "His prognosis is none" I was like prognosis for??... and he said "Survival". I am like excuse me! Through more discussion and seeing Jeremiah's cat scan pictures on a computer and him educating us and all Jeremiah basically has no live brain above the ears. Most of his brain is dead from the damage of what happened at his birth and did not grow. He has very little living brain tissue. This is part of the reason why his head circumference is so small for his age and has not grown the entire time we have had him and for months of updates previous to us picking him up. His head is 15 inches (39 cm) and not even on the chart. So he basically said the brain tissue Jeremiah does have will not be capable of keeping him alive long term. Eventually it will stop. I am like so overwhelmed. I asked if there is anything we can do. "NO" he says. The doctor does not know , or is not saying, how long this little living brain he has will keep him alive but was very clear that as he grows it will not sustain his life. I am floored still. I mean I know his Cerebral palsy is severe and I feared him saying he will never see (which he wont as he has no visual center of the brain, it is completely gone), or he wont do this or that but to tell me he is for sure gonna die because of the damage to the brain that caused the cp was NOT expected. I mean we worry because his lungs are so damaged from aspiration his whole life so Pneumonia is a risk and anybody with Pneumonia can die, but to be told it is going to happen at some point as he grows was overwhelming and very very sad. Its like as a mommy you want to feed them and get them healthy and see them grow but to know as he grows and all he gets closer to the time he wont be here :( I call myself a woman of faith and I KNOW my GOD is able and CAN heal his entire brain if HE chooses too. And I so want to beg HIM too and have and am. But I also know God's ways are not my ways and so I dont know what God will do. I also have to TRUST God and be ok either way. Right now I do not feel very ok at all. The sadness I feel is beyond compare. As my little frogie boy smiles and me and coos at me and allows me to work his muscles and improves it is so hard to look in that little face and know that according to medical science his days are very numbered :( I so do not want to accept that this can be real. I am soo praying for a miracle. Jeremiah's Dedication is this coming Sunday the 22nd and I will dedicate Jeremiah up to God just as we have planned but it will have such new meaning to me now. Yes, God I dedicate this child to you, for you to use for your glory. I PRAY and BEG you will perform and even bigger creative miracle and grow live brain tissue where this is none, and that my Jeremiah will live to adulthood and beyond, but I also have to trust you with my baby no matter what you choose to do and I WILL choose to trust you even when my heart is breaking beyond compare. I can't promise I wont be sad, I will try so hard to just have FAITH! I will try to be ok...for now I am not there though and in ways it feels like I will never be ok again.
66 comments:
Oh honey, my thoughts and prayers are with you. God gave you amazing strength but I can not imagine having to endure all of this. I am thinking of you all.
Jennifer
Tears......I don't have words that can comfort you. Only knowing that we are praying for you, and lifting you up to the Father who loves you more. On my knees with you.....
God bless and hold each of you in His hands . . . and get in touch with Scott and Kathy Rosenow from The Shepherd's Crook and ask them about their little Kathryn.
http://theshepherdscrook.org/about/rosenows/
I think they may be of some comfort and encouragement to you.
Hugs,
Hope Anne
Oh Tami, my heart is breaking for you and Jeremiah. I will be praying for you. Your faith and your love for Jeremiah is beautiful. You are such an inspiration to me. God Bless you and know that I will be praying for you and your precious baby boy.
Amy
I'm so sorry and know your hearts are breaking. I am praying for you and your family and beliving with you for a miracle.
Oh Tami, My heart breaks for you and your precious son and family. I will keep you all in my prayers.
Blessings,
Sheri
Ohhhh...I don't even know what to say. I can't fathom how this must feel. God is so much bigger and He planned this little one for your family. No matter what the future holds, God holds it. May God bring you peace tonight sweet friend.
Tami, I am beyond sad and to think it's infinitely more for you and your family is unbearable. I was just looking at J's pictures the other day in absolute amazement at how healthy and happy he looks. Being with his family has done his little heart wonders. What amazing parents you are.
Precious, precious Tami...I am praying for you guys! I can't even begin to imagine your heartache! HUGS!!!
I am praying for you all as you digest this news. I'm sure it was a shock beyond all shocks to hear that today! But you are so right when you say God is able to heal. God may heal Jeremiah here on earth or may heal him in heaven, but you KNOW he will be healed! All of us christians will be healed when we see Jesus face and are in our Father's arms. I will pray for comfort for you all and for a complete healing for Jeremiah here on earth, but I will praise the Lord for His goodness in bringing Jeremiah home to his forever family that loves him unconditionally and will praise Him for His perfect ways (whether we understand them or not). Just keep on loving your boys and enjoy them. All of our days are numbered and the only one who knows each of our numbers is God, not any doctor or any man, so once you are done grieving for the life you had hoped for Jeremiah, rejoice in the life he has. He is a blessing to all of us who have prayed for him and supported you all on his journey to your family.
Tami
Bless your heart. I cannot imagine receiving this news. It is wonderful to know we have a God who is completely trustworthy and our times are in HIS hands (doctors and tests--as wonderful as they may be--do not have the final say) May God carry you close to his heart during this difficult time. Enjoy your boy and I hope you do contact Shepherd's Crook. Love Joy
Tami, I can't imagine what you are going through. Praying for you all and precious Jeremiah! Thankful that he has and feels the love of family. Praying!
Tami I too am here. I am sorry for this diagnosis. No one is guaranteed tomorrow, not you or me, but God knows our hour and day and minute that He invites us home....earth will never ever get to be our home forever. While the prognosis is grim, it is given to you by a man whose occupation is described with the word "practice". Take what he has told you and let God do the work that man cannot do. Be who you are, that is why God made you this way. No matter what happens God is God and we who choose Him are His. So we can take comfort that we will unite again some day and free of everything that chases us down and devours us. In the mean time the battle is on, and my prayers are said for you and your family. Remember, there is only one Jeremiah who is your son, and he is not in the medical text books but rather a one of a kind unique child in all of time, so the rules of engagement are God's, Prayers for your hear to know peace. Love cathy
Oh Tami... God is a good and caring God. He knows what the future is for your precious Jeremiah. My heart is breaking for you. I will pray with you for your miracle. Love him, and care for him, and watch him grow for as long as God allows you to have him with you... that is all we can do as Mothers. God bless you and keep your heart as you go through this time.
I am so sorry Tami, you are in my prayers.
xoxo,
lynn
Tami - My heart goes out to you and your family. I will pray for strength and endurance and hope for you and Jeremiah. You are an awesome mother! Hold on and know that a whole lot of us are praying for you!
Tami, this is heartbreaking, and I wish there was more I could do for you... but ultimately know that no matter what happens that this little boy is surrounded by love and that is what he needed most, and I know God is watching over you and your family.
Oh Tammy, are hearts are breaking for you and your family. Please know that we are praying for a miracle for all of you, that God would work in his life in an amazing way and that God would give you His perfect peace.
Praying for you Tami!!!! How devastating to hear these words. But we serve a great God and no matter what, Jeremiah deserves a loving family who adores him for every moment they have with him. Praying for MANY years rather than less! Love that baby every second you can! Will constantly keep you all in our prayers!
Lord,
Give this family peace. Heal this baby from the top of his head to the soles of his feet. Do a miracle in his life Lord. Use this child as a testimony to the healing power of you and bring you glory. Heal Jeremiah on earth Lord. Let Your will be done but we ask for a complete healing. Thank you for this family and his life. In Your name we pray. Amen
Be blessed
I am so very sorry. Truly...
Oh Tami, I am so sorry. I just watched the video of Jeremiah cooing and it was so precious! Big hugs.
No matter what I say to you right now it will not touch how your heart is feeling. Your mind is spinning and I completely understand. But know this...Our Lord makes no mistakes! You were made to give Jeremiah all that he had been missing in life. You are Christ's hands here on earth...you are his Momma! Yes, miracles can happen and we will all join you in praying for one. No matter what the outcome I want you to remember you are never alone....you are being surrounded by prayer. The Lord will carry you through these days when all of this is too much. On the days you feel strong you will continue to climb the mountain of this earthly life because you are stronger than you can imagine, and God knows that. Sending so much love to you sweet friend.
Praying and crying for you, Tami, that God will wrap your family in His perfect love.
He is precious! He is beautiful! He has a killer smile, full of joy and light!!!!
It is his time to shine! He has a faith filled, loving family to help him be all he can be!
Faith in things you can see is not faith! Science is there to help, but the ultimate answers of what will be lie with God! I'll be praying with you for jeremiahs miracle!
My heart hurts for you so much my friend, and yet it rejoices that you answered Gid stepping out in great faith to bring this baby home!
Hug that darling boy for me, and know that your prayers are never unanswered or ignored!
He is precious! He is beautiful! He has a killer smile, full of joy and light!!!!
It is his time to shine! He has a faith filled, loving family to help him be all he can be!
Faith in things you can see is not faith! Science is there to help, but the ultimate answers of what will be lie with God! I'll be praying with you for jeremiahs miracle!
My heart hurts for you so much my friend, and yet it rejoices that you answered Gid stepping out in great faith to bring this baby home!
Hug that darling boy for me, and know that your prayers are never unanswered or ignored!
Oh Tam~ my gracious, how difficult that must have been to hear and then to share. I thank you for letting us in....
Please know that mircales can and DO happen all the time and I will be praying that HIS strength continues to cover you all and shine during this incredibly painful and agonizing time.
((((hugs))) over & again.....
Oh Tami, I am so so sorry about this. I'm in tears. Know that our hearts and our prayers are with you. We will be praying God's miracles through this battle. Huge prayers for you and your family. Love you guys!
Hugs,
The Stancil Family
Tami,
I am soooo heart broken for you. What a hard thing to hear. But god keeps telling me that YOU are making Jeremiah so happy and COMFORTABLE and he feels LOVED!Something he has never experienced til 2 months ago. What a difference you have made in his life. Without God placing him with you when he did he would have surely died. God has given Jeremiah the greatest gift, YOU and Bobby! For however long he is with you, you have made him feel a MOTHER'S LOVE! COMFORT! God has allowed you to be a LIFE CHANGER! Hug him, kiss him hold him and focus on the here and now. Don't worry about tomorrow for tomorrow will take care of itself. Who knows, Christ may come and take us all home TOMORROW! Remember, our God is a God of healing and miracles. You saw that first hand. I love you Tami and pray for you and your little ones DAILY!
I am praying for you and your sweet boy! I cannot imagine how you are feeling. I am praying that "the God of all comfort" is very near to you.
Tami,
I have personally known children with less brain live to early teens.
Your way you will parent him with unconditional love will be his testamony. God will uwe him for glory. I am so glad that God brought him into your life as he would never have known God or a mother and fathers love and that would have been horrible.
I would not be feeding him by mouth until you have a swallow study to determine if he is having silent aspiration . Do this to avoid any more cases of asperation
Hugs, prayers and much love,
adoptive mum to three with severe cerebral palsy for very different reasons.
Virginia
Tami,
My heart breaks for you and all you must be feeling right now. I wish I had the right words to comfort you right now. Call me if you need to talk. I'll be lifting you all up in prayer.
Oh Tami- What a devastating doctors appointment you have just endured. My mother and I were just commenting on how well Jeremiah has been doing since he has left the hospital. Your unconditional love for Jeremiah has been witnessed by so many people and who knows what impact that will have on everyone touched by you. Jeremiah and your whole family are in my thoughts and prayers.
Oh Tami.....Hugs, my friend.
Hugs Tami my friend...Praying for you all.
ohhhh Tami.... I ache and cry with you as well as cry out to God with you on Jeremiah and your family's behalf... all my love dear sister. I just don't have words. I love you.
Oh, Tami. My tears are rolling down my face. Please say it isn't so. You have been through so much with this sweet angel. Keep the faith. He is blessed with so much love from your family. He was meant to spend whatever days he has with you. Love Victoria SLC
I'm so sorry that you had to hear this sad news about your beloved son. I will pray for healing and peace and joy for you all. We all rest in His hands and you are the momma he needs now and forever. Know that you and your family and your sweet children are all held up in the prayers of so many who have been blessed by your love for Jeremiah.
Tami, I have so much to say, but don't know where to start. I will e-mail you soon. I am praying for all of you. You are an amazing Mommy and I am honored to know a woman and mother who God has chosen specifically to care for and love such a special child like Jeremiah. You are a precious child to our Lord Tami! I am praying for mighty things to happen.
Huge ((((HUGS))) from TX
Oh Tami, I just read your post on LCC and I am so sorry. The Lord has obviously brought both you and Jeremiah to this place for a reason. May He continue to carry you through it, moment by moment, no matter what the outcome.
Be blessed,
Courtney
Our God has a perfect plan for Jeremiah's life. You are part of it, and God will bless your obedience to His calling. As another poster commented, Jeremiah WILL be healed...maybe here on earth, but definitely in Heaven. Keep the faith, and know that many are praying for you and your family during this time!
Tami, I have no words, only prayers. Hold tight to our awesome God.
I will pray with hope for Jeremiah, for you. I am so SO sad *with* you.
((Hugs)) I think sometimes doctors give us information based on the typical way things progress. You will be surprised to see Jeremiah grow and change . He is going to continue to progress in your care. We all have our own idea of what progress is. It's not always that measurable progress that medical doctors measure.
I see a Jeremiah who is happy. He loves to sit up and WANTS to sit up. He responds to things in the environment and really seems to enjoy eating in a video you posted of you feeding him. He smiles at appropriate times when your family interacts with him.
I know you see so much more than what others see when we read your blog. Keep in mind that not everyone sees and knows him like you do. Doctors defenitely do not see our children through our eyes.
Every little thing you do for Jeremiah today and every little milestone he makes,no matter how small it seems, is progress. It's progress towards Jeremiah being a happier boy.
God has gifted your family with amazing strength and endurance. Just what Jeremiah needs . Will be praying for your family!
I have no words. I'm still trying to digest what I read. Nothing can compare. Thoughts and prayers are with you. May God give you the strength, encouragement and peace to understand it all during these difficult times.
Stephanie
I just found your blog - your Husband & I are friend on FB. Please, please, please - we are NOT clining this for Jeremiah. Feel free to get in touch with me anytime. My son was also not "supposed to live" He is missing between 40 and 60% of his brain. I know no two cases are alike, but I would go more on how he is acting than by any neuro's diagnosis from scans.
Neuros are constantly shocked at Christopher if they have only looked at his scans. THAT is what we are claiming for your little guy.
Sending hugs & prayers.
Steph and Christopher
www.ourlittlemanhasmoore.blogspot.com
Perhaps the Miracle in his life is that he has a family and is loved. I don't know, we may never know until we get to heaven. You are in my prayers.
Tami, I so understand your feelings. We got our precious Josh aat 3 wks old. His condition was called Hydranencephaly. His life expectancy was 4 mos. at the most. His life was a blessing. I am a RN, so we had pratical nursing students in our home, and Josh "taught" MANY how to suction, tube feed, and basically, how a life can be a blessing, even though he could never be a football star or a rock singer. He lived for almost 17 years. His death was also a blessing. Instead of flowers, remembrances paid for two wells in Africa through Hope Springs International. Josh dressed up for halloween, wore his elf's hat at Christmas, and dressed out for the Titan's ballgame. He had a bed room of his own and a bed in the living room that he occupied every day. Our family enjoyed his so much. We always told him that we wanted him "forever", but when he decided to return to heaven, we would not do anything to stop him. He left us in Feb., but we cant be sad. He is now playing in God's garden. We learned throughout the years to focus on his life, not his prognosis. Hope this can help you. Please feel free to contact me anytime.
I'm so very sorry. I'm praying for you and for Jeremiah. God bless your family!!!
I'm so sorry Tami. My thoughts and prayers are with your family.
Jeremiah was on my ladies bible study prayer list for quite some time while he was in the hospital! I will absolutely gather my women prayer warriors to pray for him and you all!
We love you!
The Farley's
I'm so sorry.
I'm praying for you and your sweet son. I've added your blog to my blog prayer list. I hope that is okay.
Tami,
I am so sorry. As everyone else has said I cannot imagine what you are all going through, but our thoughts and prayers are with you and Jeremiah. Lori
Oh Tami, Jeremiah is such a beautiful baby boy. I am so glad he has you to be his Mommy, that he has his family. I know your little boy is loved and cherished. I am sorry for your pain and sorrow. I hope the dr. is wrong. I hope your sadness can move to a place within you that leaves you freer to continue enjoying each moment with your son. Sending love and prayer and hope to you. Give him a kiss for me please. Hugs.
Tami
We know God has it all figured out, but like you said, sometimes it is hard to accept what His plans are
He will see you all through this
What a blessing your litlest son could have a momma and daddy for however long he has left here on earth.
What pain it is, what grief we all share with you, what faith He will give you to believe Him!!
Prayers to yours
Chris
Tami,
None of knows how long we really have on this earth. For each of us our days are numbered. We just have to make the best of the time we do have. No matter how short the time, Jeremiah will have had a better life for having been a part of your family. It seems that those that are with us the shortest amount of time are here with a special purpose to teach us something.
We are thinking about you and hope that Jeremiah has a happy, peaceful life, no matter how long.
BethAnn, Erich and Sydney
Wow, I don't even know what to say. I'm so very, very sorry that you and your family are facing this.
There are no words...... I am praying with you.
Tami, I just have to say AMEN to what so many people have written to you. Our God is able, if He so chooses. We planned/hoped for a long, fulfilling life for our Princess Chrissie, and we fully believed with 100% faith that God would heal her precious heart and lungs, as you know. God had already numbered Chrissie's days, and if He had told us her Heaven Day would be May 19, 2010, I don't think we would have been able to obey God and adopt Chrissie, knowing she'd only be with us a total of 7 months. God only shares with me as much info as I can handle and still be obedient. :-) What I can say is that God has been faithful and while we have so much pain and miss Chrissie so much every single day, He has taught us so many Truths about Heaven that we never knew before. Our lives are sweeter b/c of what He has led us through, even amongst the tears. Chrissie blessed our lives more than we blessed hers, even if it was only for 7 months, it was all worth it. I know that you will find the same to be true for your life with Jeremiah. If it's only a few months or a few years or by a miracle of God, even longer, you will find that the time God blesses you with sweet Jeremiah will be some of the richest times you've ever experienced. You will cherish them forever, and God will faithfully lead you through the time of grieving (whenever it comes) and He will teach you so much about Heaven that you will be blown away. It is truly glorious news (about Heaven) and the ways He will use Jeremiah in Heaven and all that Jeremiah will experience in Heaven will blow you away. It will still be painful, oh so painful, to be left behind on earth while your precious froggie boy spends eternity in Heaven, but our days on earth are so very short (especially when compared to ETERNITY), so we can rejoice that our eternity will be spent together...FOREVER...with no pain, no pneumonia, no brain issues...perfect and whole and complete for all eternity. And that is the life you'll get to rejoice in for all eternity. Read Psalm 139 and cling to its promises. Jeremiah is fearfully and wonderfully made; his days are numbered by God; all his days are already written in God's book, which includes you being his forever mommy, no matter how long or short that time may be. It is an awesome privilege, and what a blessing to have Jeremiah in your eternal family, living in YOUR mansion, being rocked in YOUR arms, eternally, whole and complete. God loves you; He is good; He is faithful; He is sovereign. Love y'all and praying for y'all!
www.AllArePreciousInHisSight.blogspot.com
Tami, I'm so sorry to hear this news. We've been following as Jeremiah struggled and then improved in the hospital, and it was amazing. I am Thanking God that he is home, and that his life, however long, will be filled with the love of a family who never gives up on him.
Prayers from Maine,
Kristy
God has already performed an amazing miracle by leading your family to Jeremiah. I am so thankful he WILL KNOW the love of a family for whatever time God allows.
However, I know today and probably many days ahead you want to be sad and maybe even angry. I've been there. So I am not going to say it is all fine. It is not. It is hard and heartbreaking.
I am so sorry for the news. I really am. praying with you for a miracle.
Came across this today while looking for something else and thought of Jeremiah. Especially when it said, "What I find amazing to this day is how the brain can deal with something which you think should not be compatible with life," commented Dr. Max Muenke, a pediatric brain defect specialist at the National Human Genome Research Institute.
article:
One interesting case involving a person with past hydrocephalus was a 44-year old French man, whose brain had been reduced to little more than a thin sheet of actual brain tissue, due to the buildup of cerebrospinal fluid in his head. The man, who had had a shunt inserted into his head to drain away fluid (which was removed when he was 14), went to a hospital after he had been experiencing mild weakness in his left leg.
DWS: All of the black in the middle is cerebrospinal fluid and the brain matter is the rim of white along the outside of the skull. This is a screen shot from a Fox News report.
In July 2007, Fox News quoted Dr. Lionel Feuillet of Hôpital de la Timone in Marseille as saying: "The images were most unusual... the brain was virtually absent."[11] When doctors learned of the man's medical history, they performed a computed tomography (CT) scan and magnetic resonance imaging (MRI) scan, and were astonished to see "massive enlargement" of the lateral ventricles in the skull. Intelligence tests showed the man had an IQ of 75, below the average score of 100. This would be considered "borderline intellectual functioning"- which is just next to the level of being officially considered mentally challenged.
Remarkably, the man was a married father of two children, and worked as a civil servant, leading an at least superficially normal life, despite having enlarged ventricles with a decreased volume of brain tissue. "What I find amazing to this day is how the brain can deal with something which you think should not be compatible with life," commented Dr. Max Muenke, a pediatric brain defect specialist at the National Human Genome Research Institute. "If something happens very slowly over quite some time, maybe over decades, the different parts of the brain take up functions that would normally be done by the part that is pushed to the side."[12
Tears Tami. I am praying...
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