"three times i pleaded with the Lord to take it away from me. but he said to me "My grace is sufficient for you, for my power is made perfect in weakness." Therefore i will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. that is why, for Christ's sake, i delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. for when i am weak, then i am strong." -2 corinthians 12 8-10
this was the "verse of the day" on my google home page yesterday. never has a "verse of the day" hit so close to home as this one. the surgery yesterday was actually pretty successful but the condition of his right eye was much worse than we expected which complicated an already complicated situation. let me start by saying that dr trese is the only person that could have saved his eye, let alone fix all that was wrong and we are SO thankful to be here. now, i will attempt to explain what happened in the surgery.....dr trese was able to remove about 80% of the "debris" which was actually a massive tumor like piece of scar tissue left over from the infection. the scar tissue filled about half of cole's eye ball so it was huge and impossible to see through. this scar tissue also caused a problem that we knew nothing about before yesterday.... we had been noticing that cole's right eye was shrinking and seemed to be moving back into his head. when the dr got in there his eye only had a pressure of about 1 or 2 and had started to cave in..kind of like a deflated balloon. the dr said that his eye could not have survived much longer as it was; so we are fortunate that we got him here when we did. apparently the scar tissue had damaged the ciliary bodies in cole's eye. the ciliary bodies are what produces the fluid which keeps the eye inflated. cole has always had problems with the pressure being too high [glaucoma], but since the infection the pressure in his right eye has been very low. this never made sense to us because he no longer has a functioning bleb to keep the pressures down, so why was it so low? the dr's in kc said it was likely because of the inflammation which is sometimes true but didn't explain why it remained low after the inflammation had cleared. we learned yesterday that it was actually the scar tissue that was causing the pressure to be so low. dr trese described it this way "imagine the ciliary bodies are blades of grass, cole's blades of grass are incased in concrete and i had to try and remove the concrete without damaging the blades of grass."
dr trese was able to remove the scar tissue for the most part and was able to free up the ciliary in a three different spots. we are hopeful that the ciliary bodies will be able to function on their own, but we do not know if they will or not yet. there was some retinal damage where the retina had pulled away from its proper place because it was attached to the scar tissue...to fix this dr trese freed the retina from the scar tissue and put a heavy liquid into cole's eye to hold the retina in place. the liquid also gives his eye the fluid needed to regain it's shape, but the liquid will go away in about a week and if cole's eye does not produce fluid on its own to replace it we will be in trouble, so please pray that his ciliary bodies will work again because there is nothing more they can do to make them work at this point.
so what does all this mean? first of all, cole has to be able to produce fluid and maintain the pressure in his eye....IF this happens then we are still left with figuring out how well his retina functions and how much visual field cole has now with the scar tissue out of the way. his eye needs time to heal so it will take two or three months before we will know everything. also dr trese had to remove most of the iris in cole's right eye so that he could successfully get the scar tissue out which has its own challenging side effects.
as you can tell we are overwhelmed and upset and frustrated and confused all at the same time. we do not know the final outcome but we do know that apart from a miracle from God, we need to lower our expectations. we know we need to move forward with the sight cole currently has. we will go ahead and get cole the help he needs at school and begin to teach him [and us] about how to live with low vision. he is legally blind but still functions pretty well: he can still read as long as the words are magnified and he gets around fine indoors as long as we keep the lights low. however outdoors he functions as though he were totally blind because his extreme light sensitivity makes him keep both eyes closed. he will need orientation and mobility training at least for outside. cole may still regain some sight in his right eye which would be awesome but we know now that apart from God's divine intervention, cole won't ever go back to seeing as well as he did before the infection.
our hearts are broken and heavy as we now have to come to terms with the reality of cole's vision loss and the affect it is going to have on every facet of his life. it feels as though i am mourning the loss of cole's vision..i have not let myself do that fully because i was holding onto hope that things would get better. i am happy that i can now begin to move forward again, i can move forward with what eyesight cole has left and focus on making the most of it. i now feel free to grieve and mourn the sight that has been lost. i can cry and scream and get mad over this and then i can move on. i feel relief in that.
i know this is long and confusing and my thoughts and feelings are certainly rough and unedited but we know that you all have been praying and so we wanted you to know where things stand as best we know them. i will keep you updated on our journey, thank you for walking with us thus far. we love you all.
27 comments:
We love you all. We are praying for you all. If there is anything we can do let me know!
I LOVE YOU ALL SO MUCH!!!
IT BREAKS MY HEART THAT NOT ONLY COLE, BUT YOU AND BRENT ARE HAVING TO GO THRU THIS!!!!
YOU KNOW THAT I WILL DO ANYTHING I CAN TO HELP IN ANY WAY YOU NEED ME.
TELL COLE I LOVE HIM....
Pam
Thanks for keeping us updated! Sam and I have been praying for you all everyday. We love you.
Callie
Thank you for much for the update in the midst of all you are going through. Please know that many of us are wrapping our arms around each of you, Barb and Denny
I am so sorry friend.
We all send our love and prayers.
Thank you for taking the time and energy to write all this out for us.
thanks so much for the update in the midst of all you are experiencing. Please know that in our hearts we are wrapping our arms around each of you.
Sum, I can hear your feelings so well in this blog. Thanks for sharing. We are praying for a miracle for Cole's eyes. Praying for you guys to continue to find strength in the Lord.
Love you!!
Allison
Thanks, dear friends, for sharing. We stand with you with love and prayers. I value your walk of faith and know something of your pain. God knows it all and is walking with you. Your (former)family here at Riverside Community Church will keep praying with you! We love you.
Walt Barrett, sr. pastor
Summer and Brent...thank you for sharing your heart. I will be praying for you both during this grieving process although I cannot imagine grieving this loss I have grieved other significant losses recently and know the deep pain (the kind you can not articulate with words) associated with that…tears come to my eyes thinking of the overwhelming feelings at the start of this grieving processes you both are experiencing. I will be praying that you both experience God's presence with you both as you grieve.
Lovingly, Claire
Summer,
I am sooo sorry that this is all happening to you. I understand the pain and confusion that you are feeling. My youngest was born with a hole in the base of her skull and from that she contracted bacterial menningitis, because of the malformation of the skull she does have some differance in her appearence. At the time we were concerned that her hearing was affected from the large doses of high powered antibiotics and her very young age. She hears fine now. She has had many surgeries ranging from a craniotomy to cleft lip repair and most recently a shunt for hydrocephelous and has more plastic surgeries in her future. Her craniotomy left her developementaly delayed. After surgery her expression was blank for about a week, her smile was gone, her voice was quiet. My mom would ask me if she was going to smile and jibber jabber at us again. I would get so angery inside because I did not know. You go in to the hospital one way and three hours later that was gone. We prayed and prayed. I was overwhelmed when I found out how many people and states had prayer chains going. A week later she smiled again, and a week after that she was quietly jibber jabbering with her sweet little voice. We have learned to adapt the things Sophia needs. We celebrate our milestones. Though it is hard not to look at the other 2year olds and think about what she should be doing, I thank god for what I have and celebrate every milestone we reach. I there is also the pain,tears and anger of children looking and making comments about her appearence. They are courous and I try and educate them and let them know that she loves kids and wants to play. I went to my daughters class and told them about Sophia and let the kids ask questions. The kids love it when we visit or go for lunch. Sophia is developing slowly and will go to a school for developementaly challanged children through age 6 they have daily PT, OT and other therapy to prepare them for regular school. We do not know what level of functioning she will have but it should be pretty high with some modifications in daily life. I have not lost my hope that there will be the day that she can attend classes at a college level, live on her own, get married and have her own childern. We have to live life day by day and milestone by milestone.
I pray that God heals Cole's eyes. while it may leave him with some new challanges to defeat, it can be done. Have your moments of screaming, crying, and anger, those are healthy emotions to get out,this is your child. But at the end of the day you find the strenght to pull yourself together and cherish your little boy and try and make the experience a good one, or as good as it can get. The unknown is the most frightning.
I am sorry this is so long. I know when I realized I was not alone and other people understood the helplessness I felt and the lack of control of the whole situation I didn't feel so alone.
God bless and I am thinking of you.
Lara Epps-Terry
To one of the sweetest families we know. I can't tell you how many times I have read and reread the blogs to try to understand all that Coles's little eyes are going through........and you all as well. We are praying and praying down here. Do you have an address there? LOVE, The A's
To one of the sweetest families we know. I can't tell you how many times I have read and reread your blog to try to understand all that Cole's little eyes are going through....and you all as well. We are praying and praying. Do you have an address there? LOVE The A's
COLE! we love you buddy, gray misses you a lot. We have prayed at the dinner table and many other times for you little buddy. I am hoping that everything will get better. Keep hanging in there, youll get through this . just trust. HE always comes through that is His promise to us.
Love the Carpenter Family
Summer and Brent, I ache for you when I try to imagine how difficult your medical journey with Cole has been. I am praying for Cole's healing. I'm also praying that the reality of God's sovereignty will continue to fill you with His amazing gift of peace. Love from Jeanette and all of us Millers
Praying for ALL of you!
Sarah and the boys
I first met Cole a few years ago when my niece Margaret Rooney was babysitting him. My entire family was enraptured with this little boy and his magnificent personality. It is obvious that God has given him the special gifts that he may need to cope with lifes difficulties. I will keep Cole and your entire family in my prayers. God Bless you..
we're definitely praying for you guys & sweet cole's little eye! thanks for the update!
jamie
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