Feb
26
2012
diagnosis.
I’ve sat down to write this post several times…and each time…I’ve come up short being able to put my thoughts into words.
Last week we took our sweet Danny boy to the pediatrician. We found a new doctor once we moved and had already been to see him a few months ago to discuss Danny’s medical background. And Danny has been plugging away at his physical therapy over the last few months as well. But over the course of the past few months (about 6 months or so)…his particular set of symptoms was beginning to nag my mommy brain on a daily basis. I googled…and researched…and read…and prayed. And I knew it was time to finally make the appointment I had been dreading and discuss what I was thinking. I didn’t expect an immediate diagnosis that day, though. And although the diagnosis itself didn’t surprise me…it still hurt.
Danny has cerebral palsy.
If I’m honest with myself, I knew something wasn’t quite right the moment I met him. But due to his circumstance…we were able to categorize most of his symptoms as “developmental delay”. He didn’t get exercise enough. He didn’t have optimal nutrition. He was so sick in Ethiopia…and the list goes on. When we brought him home last January he had fallen even farther behind the curve. But we weren’t overly concerned. We got him working in physical therapy and he started making progress. His muscles started to relax and he gained coordination.
And although he is still making progress EVERY day…he has fallen a complete year behind on his gross motor development. That, combined with a pretty extensive list of other issues…led me to follow my gut and pursue a diagnosis. The issues that we have seen most prevalent in our sweet son are: high tone (when he came home we couldn’t lift his hands above his shoulders), fisted hands, uncoordinated eye movements (we will have surgery to correct this eventually), tip toe walking, choking and gagging, constipation, inward pronation of his feet and hands, difficulty with motor planning, disturbed sleep, and problems swallowing. With several of these issues he has already made great strides! And many of them are on a low level as he was diagnosed as “high functioning”. But the list was just too long for me not to believe that there wasn’t an underlying cause!
Danny will undergo anesthesia for an MRI on March 5th to look at his brain. And then we will see an neurologist at Children’s in Omaha to discuss what they find. This is just an initial diagnosis…we won’t know with complete accuracy what we are dealing with until we can meet with the pediatric specialist.
What I do know is this. God gave us a special gift in this amazing little boy. He has already overcome SO MUCH in his short 21 months. He is a gift that we don’t deserve. God’s plan for Danny has never changed. He created him to be EXACTLY who he wants him to be…and while it hurts my mommy heart to watch him struggle…God is using even this to shape him into the disciple He wants him to be. God makes NO mistakes. God has a plan that is ALWAYS better than my plan…even when it involves pain. And God has given Danny everything he needs to overcome this obstacle!
We are so thankful for all of your love and support during our journey to Daniel. We know he has touched many lives already…and we continue to look forward to seeing what God has in store for our son!
Thank you for sharing…your boy is precious and has captivated me since your brought him home. We will be praying for insight and for healing…whatever that looks like for sweet Danny boy. May God continue to fill you with peace as you navigate these new roads.
in tears… you are an amazing mama and God chose you for Danny for a special reason. Praying for you and for Danny… and so so thankful that he is home with you. love!
I fell in love with Daniel on our first trip. What a beautiful boy and I agree that he is going to bless your family. You have such a wonderful perspective and God is going to be with you through His struggles to overcome obstacles . You will all remain in my prayers. Thank you for sharing your heart.
Our God is a BIG, BIG God. From the moment, Danny was born and even before, God knew Danny would belong to your family. God equips us for each day, each moment.
Love to your family. Thank you for sharing.
There is not much more inspiring to me as a mom than to watch another mother dig and fight for her child. Danny is loved, precious, and so adored! So thankful for him and that he is a treasured son and that God gave him such incredible parents! Blessings to you Jenn, if you can please let us know how we can support you, love you sister and I’ll am praying!!!
i’m glad that you took the courage to share the really hard parts of life. know that danny is much loved as are you, sweet sister friend. praying for God’s blessings in your little man’s life. love you!
Oh Jen. You are so right that Danny is a wonderful gift. Praying for you all as you take these next steps.
Oh as soon as I saw those words, I knew I needed to leave a comment. I’m sure you’ll hear lots of stories, but I am married to the most wonderful man who also happens to have CP. As a young boy, his right hand was clenched and his arm was curled at the wrist and clutched tightly to his chest. He worked through a great deal of therapy to learn to walk and coordinate his right side (his right is predominantly affected). While I am SURE his parents would have done anything to spare him the struggles he endured–especially any CP related ones–as a man of incredible integrity and faith in God, he would tell you today how God used CP to mold him into the compassionate and determined person he is today. A man who has been able to do everything God has called him to do, and who has been able to try most everything he wanted to–including playing in the marching band in high school and college, earning bachelor’s and master’s degrees in engineering, and caring lovingly for his wife and young children. We will be praying for you as you continue to nurture Danny and as God grows him into the person he has made him to be.
Blessings to you and your family!
Becca (a friend of Kim Jewett)
Love you. Love Danny. It is well.
Jenn, my heart is just breaking for you. I love your Godly perspective. I am prying God’s peace and comfort and grace to help you keep that perspective daily. God gave you Daniel because he knew you would be the perfect mom/family to triumph over this. May He be the author of your new dreams for Daniel as you navigate this difficult road.
Your sweet, beautiful boy will be in my thoughts and prayers. He is definitely a blessing! You are one great mommy – I know you will get him whatever help he needs, and he will thrive. Many hugs.
Jenn, thanks so much for sharing this. I can’t imagine how difficult the news was for you guys to hear. Your positive attitude & your focus on Gods love & faithfulness will get you through. We will keep you in our prayers!
Oh, Jenn, I’m sorry. But I think of what a story, how GOD KNEW. God had a plan for him to be in your family where you could give him the best care and hope for a future possible. He moved you back to Lincoln so you would have a bigger support group in being closer to family. God knew it all. “Great is Thy faithfulness, oh God my father, morning by morning new mercies I see.” How thankful I am for a God who is in all those details.
oh friend….God gives us those mommy instincts for a reason. Thankful that although it means difficult roads ahead, you have a starting point. You have a next step and you will be able to help your precious little man even more fully with the love and compassion you have always had for him. God’s fingerprints seem to show up the most clearly on those that the world seems to see as imperfect. Thrilled that Danny has an amazing Mom and Dad that will do whatever is best throughout this process. Thinking of you and praying for you <3
((HUGS))
First of all those pictures of Danny are INCREDIBLE!!! He is such a beautiful boy!!! Secondly… again your strength amazes me. It is so hard to actually hear the words even though your heart already knew. I will continue to pray for your family and for the doctors/therapists surrounding Danny. Hugs and Love!
The love and support that your family has for another leaves me no doubts that Danny boy will become everything and anything that he wants to be. The Mann’s will say a special prayer from OP, KS every night for all of you.
HUGS!
Jenn – thinking of you and the entire Cooper family. Your positive attitude is an inspiration to all of us. Hugs!
Oh friend…. praying for you and your sweet boy. I would love to share with you one day Collin’s story and how God is truly a Healer. I will pray the same for Danny. Praising God that he was given to you to get the very very best care possible. {hugs!!}
Wow this must be hard. I work with children with special needs and so often I long for these amazing children to have wonderful parents like you guys – there is so much hope for your little boy and I look forward with anticipation to seeing all the things he will learn – CP can make each and every milestone so much sweeter and more celebrated!!
So many people have said exactly what I want to say…Danny was put in your family for a reason. Your outlook on life in general is beautiful and Danny will have that same outlook on life because of you…THAT is such a gift! We will continue to pray for your family that you can wake up each day with the same outlook on life as you do now and that with God’s grace, Danny continues to grow, develop, and be who He designed him to be!
Thank you for sharing this, Jenn. Danny is such a special boy and I know God has big plans for his life! Prayers for you and your sweet family!
Ah lovely girl– we will pray for Danny and his mama!! Your attitude is so amazing, and that strong little man won’t let anything get in his way- look what he has done already! Much love to all the Coopers!
Oh Jenn…I don’t even know you but as a Momma my eyes are tearing. You wrote this so beautifully and how wonderful for you to be so open even to those of us who do not “know” you…I will pray for you. And Danny, and your family…God sure knew what He was doing when he plucked this sweet baby boy out of Africa and placed him in your loving arms. I can’t imagine how his life would be without you loving him. God is good, all the time.
Wow, I am stunned. I was reading along on your post, and while I knew that “bad” news was coming, I was shocked to read that he has cerebral palsy. What I can say is that he is one very lucky little boy to be living in such a loving family who will be there to love and support him 100% of the way. God was surely looking out for him when he placed him in your hearts and in your family.
Many prayers to you, your family, and little Danny!!!!!!!!!!
Thank you so much for sharing. I heart goes out to you and your family. My sister and I have been reading your blog for sometime now and really enjoy all the things you have to share. You are such an inspiration!!!! We will continue to pray for your family.
I am sorry to hear about your baby boys diagnosis. I was diagnosed with CP at 15 months when I stopped walking. I have had lots of surgeries and therapy over the years and although I have difficulty with gross motor skills, I have lived a normal life. I am married and currently teach 7th grade science. I just wanted to give you hope! Your little boy will do amazing things and he will have determination like no other!!!!
Jenn, you have my prayers. It seems so obvious why God put your family and Danny together. Can you even imagine what his health would look like at this point in his development if he were in another country? You are going to be a blessing to him as he is no doubt going to be to your family. Love you guys!
Jen, my heart goes out to you and your family. I know you already know this, but Danny is exactly where he needs to be, with you and your loving family. I can’t imagine what his life would be back in Ethiopia without the assistance & therapy that you are able to give him here. God placed him with you and that means the world of difference in his life (((hugs)))
I’m so sorry you have received this hard, hard news! Praying for *His* peace to stand guard over your heart and mind as you go forward in doing what is best for your sweet boy! The Lord has certainly blessed Danny with a family to love him through this and may it be used for *HIS* glory!
What courage it took you to write this post. Keep blogging, keep sharing. It is important and valuable for all of us out here, out there. Best to you, your family, and Danny – what an adorable boy!
Jenn, thank you for sharing & for the testimony of God’s faithfulness in the difficult news. Those last couple paragraphs bring me to tears. What a comfort to know that God is on the throne & has a perfect plan. Lots of love to your adorable Danny boy! Sending you a hug & am praying for continued peace that only He can give. Isaiah 26:3
I am so sorry.
As mom’s we never want to see our children hurt, suffer, or struggle.
Glad that you know THE truth and can cling to the Lord!!
Swwet boy! So glad that he has you as his advocate , prayers for your journey! Interestingly, we have 2 families in our church adoption group that just received similar news, one little girl from Russia, and one little boy from the US foster system.
Also, I just had to point out that the catch lights in his close up are in the shape of Africa!! Did you see that?!
What a precious little boy. I have been following your blog for quite awhile and just love hearing about Danny’s progress. He is such a special person and I am so glad God allowed you to find each other. I will be praying for him and know that he will do great things.
i so much love your danny. and you. praying you all up as you head off for the testing and probing. you’re so right: God’s all over this.
Oh, Jenn, I’m just now catching up on blogs. The first thing that captured me – as always – is your sweet Danny boy’s smile. That little boy is destined for great things, I just know it. I’m sorry for this new challenge and the adjustments that come with it. It’s so hard as a mama not to want to just envelope them in our arms and just run. But I know God will continue to guide you in every way. Little Danny, you have a sweet, sweet mama and many fans all around the world. We’re in your corner. ((Hugs))
dear friend…just now reading and wish i could give you a big HUG! praying for you and sweet Danny. you are such an amazing family and God has been on this journey with you all and will continue to be- you are soooo right. your attitude and faith are both so strong. keep the faith. God is with you each step of the way. you are all in our prayers and thoughts daily.