Let's start with the highs...I was nervously awaiting Kennedy's neuro sonogram and her doctor knew it. As soon as she had the results, she called my room. The words coming through the phone were like music to my ears..."There is nothing out of the ordinary. Everything is perfectly normal." My smile was as big as Texas and I couldn't get to my cell phone fast enough to share the news with Brian. It was the middle of the work day and I knew he was extremely busy, so I sent him a text. His reply was short; "Yeaa, thank you!" Even through a short text I could feel him breathe a sigh of relief.
Ok, one hurdle behind me for today and moving on to the next...I had a meeting with the Neurologist this afternoon. My stomach was in knots as I paced our room waiting for this consultation. I stayed up late last night writing down all of my questions so that I wouldn't forget anything. I kept telling myself that I could hold it together and be strong. I did, and I made it through all of my questions before the flood poured from my eyes. As I suspected, the prognosis was not encouraging. She said based on his perfect brain scan that was done at birth and compared to his current MRI, the diagnosis is severe Encephalomalacia. This was caused by a stroke when he was so very sick. His frontal, medial and postal areas of the brain are all affected; further saying over fifty percent of his brain was damaged. Based on the seriousness of the damage and the parts that were affected, the average life expectancy is 1 to 2 years. This was not only hard to hear but I could physically feel my heart come through my chest. Even knowing this is all statistical data, the pain we are experiencing is real.
Where do we go from here? Well, nothing has changed from my mindset of yesterday. We are going to do everything we possibly can for our little man. He will let us know what he is capable of through time; we will have extreme patience and get him the best therapy. We will continue to pray relentlessly, and hope to witness yet another miracle from our baby boy. Most importantly, we will cherish every second we have with both of our little miracles.
Pictures:
1) Drake
2) Kennedy
3) Kennedy
4) Drake
5) Kennedy
6) Drake
Drs. told my family my cousin would not make it past 2 years of age. She turned 27 in August. No one knows what the future holds but the GREAT man up stairs. He put Drake and Kennedy here for a reason. I have no doubt in my mind we will watch them grow and thrive. Keep the FAITH and He will guide ur way.
ReplyDeleteI don't know exactly how I found your blog, but I have been following for about a month. I have never posted before, but I wanted to let you know that I have been praying for your family, especially your little man! God is the ultimate physician and a miraculous healer! I pray HE would pour out His peace on you.
ReplyDeleteHello,
ReplyDeleteI would like to give you the testimony of my husband's sister who was born with downsyndrome. The doctors didn't give her a year to live, then not two years and so on. She is now over 70 years old (the average life expectancy is about 50 years today). She just recovered from pneumonia and is still going. God is able to do above and beyond!
Drake and Kennedy are two of the luckiest kids on the planet! They are so extremely loved by so many! You and Brian are incredible parents and those babies are more than blessed to have you both. Your strength, courage and unconditional love are a lesson we can all learn from. We continue to pray for your family and love looking at all the beautiful pictures. Team Drake and Kennedy!
ReplyDelete~ the Ogrodniks
Miss Kennedy and Mr. Drake are the cutest, cutest, cutest. Reading about them everyday and seeing their pictures helps me remember that each day is a gift to enjoy and cherish.
ReplyDeleteI cried when I read Friday's post. Saturday, I was thinking of both of you and feeling so very sad. Then, a peaceful feeling came, that Heavenly Father knows and loves Drake. He has a plan for him through all of this. He knows the end from the beginning. I'm glad your dad shared such awesome advice. It must be hard not to wonder and worry, but I pray for peace for both of you, and I'm certainly praying for Drake and Kennedy!
My mind is processing these words you have written ...my heart is breaking for you both--but not because of the news regarding Drake, but because I am wishing there is someway to shield you from hearing things like that. It's more empathy for your experience today then worry for Drake. I am praying for your strength and peace and encouragement as you face each moment-- it cannot be easy to be in your shoes, but if I could just put one on to relieve you I certainly would.
ReplyDeleteMy mind understands the medical statistics you have been presented with and shared w us....BUT My heart will not receive the drs prognosis for Drake. There are too many factors that drs cannot take into account to make accurate calls on these things--especially when determining a future...#1 They never factor in God and His promise (there is something about bringing up God that scares drs--even though many are believers --for some reason miracles and God's work doesn't reflect enough credibilty in the medical world so they leave hope and possibilty of miracles out for the most part...and they all too often site statistical data as if its the only way things can go) #2 they cannot take into account the tremendous support network of the parents and family and friends--that is a huge driving force in successful living for any of us. #3 Kennedy!!!!--plain and simple Drake is here for her, I think he has been so tough this far because he knows he needs her and she needs him!they will be each others driving force--a force, we have seen so far, that is to be reckoned with!!
I just do not see that prognosis in his eyes...i fixate on their little eyes...they are so full of life and promise. I just see no limits to what either one of them will do!!
I am so elated over Kennedy's scan. That is good news, she is such a super girl!
Hold steadfast to your hopes for each of them! The enemy wants you to take todays news to heart and give up .Confidently say "no never! My child is a child of God. Given to my care on loan from our masterful Creator!!" Then cast your worries and fears upon the Lord--your burden he wants to take, your load he wants to ease! It is okay to cry out "Jesus"--he wants to come near--just call him, his name alone is powerful. I encourage you to try calling out loud to him if you haven't already...peace follows, when you welcome the Holy Spirit.
I know you have a million things to do...but if you get a chance maybe take a few minutes a day to read a book about a man who was faced with so many challenges and through his faith he was redeemed...its the book of Job. A very hard to swallow, yet truly inspiring book of scripture. His constant attitude of faith through word and deed reminds me of you and Brian. You both are so gracious in your circumstance and so perfectly made for the path God has set you on.
My prayers are steadfast. And my thoughts Are frequently of Amazing Drake and Super Kennedy. I am so thankful for each day you share with us. Reading This blog and seeing the power of prayer has changed my relationship with the Lord--and i have your sweet family to thank. What a blessing each of you are.
Annie and Brian, I'm sure you are physically, mentally and emotionally exhausted at times. I pray every day for the four of you. God has a plan, and it's hard not knowing what it is. Love each other and take every day as a gift. I will pray for continued strength, that you have excellent medical staff and therapists, and that your babies and you are surrounded with lots of love and support.
ReplyDeleteThe prayers are ongoing. You are an incredible testimony to unconditional love. I am sure the journey has been rough at times; I am just as sure that you have no shortage of love for either of your precious babies.
ReplyDeleteOur pastor once shared a sermon regarding living in a state of worry and he said what got him through this to a calm place was that for every "What if..?" he drummed up, God always had the same answer and response; and always restored his sense of peace. I have had some very difficult days and have so found this to be true. When things are particularly difficult,I whisper "Jesus"and I can not even count the times this has restored my equilibrium. I pray for you an encouraging and loving day with your dear babies. Shalom<><
Many prayers headed your way. Kennedy and Drake are on my heart, mind and prayer list every day!
ReplyDeleteOh Annie - I wish there were a way that doctors could give news without it sounding so bad...I am the worlds worst about thinking the worst but praying for the best...this has never let me down. Scotts mom had encephalitis when he was 15. The doctors at one hospital said she wouldn't make it a few weeks. Her mom and dad said they didn't believe that, took her to Houston and within a week she was doing 110 times better...We will all be standing behind you lifting you up in prayer with arms outstretched for ANYTHING you may need. Love you -
ReplyDeleteYou four are in my thoughts and prayers every day. Drake is such a fighter. Stay strong, and know that there are so many people out that that you don't know that are praying daily for your adorable twins. :)
ReplyDeletePrayers are going up every day for you guys - remember "I can do all things through Christ who strengthens me" - Philippians 4:13 May God bless you and your family
ReplyDeleteI have never met you, but have been following your blog for a few months from New Braunfels. My prayers are with you both, your extended family and of course sweet little Drake and Kennedy. They are both such amazing gifts and strong fighters as are you and our God is an amazing and all powerful God! Prayers will continue, may your hearts be encouraged this and every day.
ReplyDeleteAnnie & Brian,
ReplyDeleteYou are already the most amazing parents and have the most amazing babies! My prayers remain with all of you, and I have no doubt God has a special plan for your family. Drake and Kennedy are a blessing and continue to amaze us all. I have no doubt they will amaze all their Doctor's as well! Stay strong and know more people than you will ever know are sending God prayers for your precious babies.
I so admire your strength, which has been tested beyond measure. Your babies are beautiful and they have been given the gift of being blessed with the best parents God could find for them. Know the whole community supports and loves your family, even though we have never met!
ReplyDeleteYou guys are an awesome family and have been great parents to these precious babies and that will continue. I know little Drake has too much Tuttle/Gilstrap in him to give up.....HE WILL WIN THIS BATTLE TOO !!! Drake and Kennedy are in our prayers daily along with mom and dad. Hang in there and let us know if we can do anything. Love ya !!!
ReplyDeleteMy heart and prayers are with you all. Through God all things are possible. He is a fighter and amazing things will happen for him!! He is a rock star and will shine.
ReplyDeleteHolly and Chris
A friend's married daughter is in her 30's, a Mother of 3, works as a dental tech and recently had a brain scan because she does have MS. They told my friend her daughter should not be alive because there was something major missing in her brain. They also told her had they known this years ago during pregnancy they would have recommended abortion because this amazing woman would not have been able to survive. But no one told them so she was born, went through all those years not knowing that she had any limitations!!! and excelled in life. No one knows what the future holds for Kennedy and Drake but I believe anything is possible and GOD IS IN CONTROL.
ReplyDeleteI will continue to watch for all the amazing events in these two little lives.
Still here and praying for you all! God has a plan, way bigger than we can think or imagine. The hardest time of my life have been such blessing. You and Brian are wonderful parents and those to babies are such an amazing blessing to this world. Keep the faith.....God is wonderful!
ReplyDeleteAlso Annie....Is there ANYTHING and I mean ANYTHING we/I can do to help you in anyway? I live in Carrollton and am close by and would be willing to do anything at all to help you guys. I don't know you (I am friends with Bonnie Smith).....but I would love to be able to help out in anyway. I know this must be hard with Brian working during the week. Please let me know if there is something I can do to help you guys! My email address is amyrshifflett@gmail.com if you would like to send me a message.
ReplyDeleteI want you to know that even though I haven't ever posted, I have been following the twins progress and praying for them since their Aunt Teresa asked for prayer for them. I have believed and prayed from the beginning that they will grow and thrive. God has been with them and you from the beginning, He is bigger than any challenge you will ever face and He alone is in control. I claim health and victory over this new challenge for Drake and continued health for Kennedy in Jesus' precious name. I look forward to more posts about Drake and Kennedy's amazing and miraculous journey. Praying His perfect peace be upon you and love and blessings be ever abundant.
ReplyDeleteOh Annie...he's going to defy those odds, I just know it! My favorite Bible verse during trying times is Jeremiah 29:11 "For I know the plans I have for you...plans to prosper you and not harm you, plans to give you hope and a future.". The Lord has such an amazing plan for your family and God made you Drake's momma for a reason. Be strong my friend...
ReplyDeleteContinuing to follow your blog and pray for your 2 miracles from New Braunfels. As a Mom, I can only imagine what you are going through right now. Just know that Drake and Kennedy and your whole family are in the thoughts and prayers of many, many people and through God all things are possible.
ReplyDeleteHi I live here in Kyle and had my triplets at the same gestation as you 3 years ago. They were in te nicu 100+ days as well and it was definitely a roller coaster. While its not the same, our ella was diagnosed with a grade 3 brain bleed that they said would probably mean she'd have cerebral palsy and other disabilities. We were fortunate that she exceeded all expectation and was our first to walk and has had no issues to date. The drs were amazed as we're we. I hope that your sweet drake exceeds your expectations too. Your doing such a
ReplyDeleteGreat job and I'll continue to pray for you all. Please email me of you need anything or have any questions! Lindsaymmilligan@gmail.com
Annie & Brian,
ReplyDeleteI read you blog every day and am praying with all of my might for your beautiful babies. I have a one year old and another one on the way, so all I can think is what a gift every day is with our children!! I will continue to keep your family close to my heart and pray for Drake to defy all the odds!!!!!!
All my love,
Kristen (Brown) Horabin
I'm so humbled by your faith and unwavering trust in the Lord. I cannot imagine what you are feeling right now. We are continuing to vigilantly pray over Drake and your entire family, and praying for an amazing miracle. I know God is holding all four of you in His mighty hands right now.
ReplyDeleteContinued prayers for strength for you and your family. "With God all things are possible" Matt 19:26
ReplyDeletestephanie boozer
Annie, he will over come this!!! You have met my little proof of God's mercy and grace. Proof that He can and does perform miracles! Of course my little one should not have survived delivery, but he did. We were told he would be retarded and have others issues with cerebral palsy. You've seen him... so far from those diagnosis!!! It's not the diagnosis that molds the child, it's his care givers. As he grows, push him to do things, set his goals, continue to show him your love. We have a common phrase around our house.... it's "Wesley time". He does things and develops on his own schedule. Just be prepared for "Drake time". It won't be easy, but it will be so amazing to watch him defy the odds. Utilize your resources always! Know that the prayers surrounding you continue without ceasing.
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