detroit

3.31.2009


we are going to try dr trese in michigan first.  dr trese has been out of the country but cole's info should be in front of him today.  we are hoping to hear something today or tomorrow on when we will be making the trip to detroit.  if there is just no way that dr trese can see cole in the next 3 weeks we will likely go back to the duke eye center to see the retina specialist there but i will keep you posted.  
in the mean time cole is looking forward to his 7th birthday on april 16.  we don't want the surgery to interrupt his birthday plans so we are holding off on his party until we know our travel plans!  cole is doing pretty good but this is hard on him.  he is having the most trouble with the light sensitivity.  any amount of light indoors and outdoors makes it very hard for him function.  he is wearing a hat and sunglasses but says they don't help that much.  i have found a place on line that sells glasses in kid sizes with about 50 different lens options to help with light sensitivity while still allowing him to focus and see color contrast.  they are sending us three different colors for him to try in varying degrees of light blockage so he can have one for indoors and one for outdoors in the color that is most helpful to him.  we are both excited to give these a try and see if they can help him!    
it seems that every time we go to the eye dr i come home feeling down.  i think the longer this goes on it is becoming more difficult for me to hold onto hope that cole's vision will return to his right eye. i know that there is always hope, even when every one else tells you there isn't. i just like to be prepared for the worst because then i think i can some how handle it better, but as dr phil likes to ask "how's that working for ya?" not so well i'm afraid.  being prepared for the worst mostly just makes me sad all the time and that is not helpful to anyone.  so please continue to pray for us that our hope would be restored, that we'd have peace and joy during this time, that the glasses will be helpful to cole, that we'd get to schedule the next surgery soon and with the best dr for the job. thank you thank you thank you :)      

Posted by Posted by summer phillips at 12:39 PM
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the journey continues.....

3.24.2009


cole and i made our weekly trek to children's mercy today to meet with his eye dr.  today was the first time we've seen him since cole's surgery because he was out of town last week for spring break.  dr cassel said that he had been thinking a lot about cole's situation while he was on vacation and he thinks the best thing for us to do now is to go to detroit michigan to the best pediatric retina specialist in the country, named dr trese.  dr cassel said that dr trese gets all the really difficult cases from all over the country and that going to him for the next surgery would give cole the best chance to see again. i'm not sure why this news feels so heavy to me but it does.  we were hopeful that the cataract and debris removal would be an easy fix but now we know that it is not going to be that simple.....nothing with cole's eyes ever is, so i should not be surprised.  we did not expect this news today but the dr said that cole's case is extremely complicated [and i don't think he expected what he got in cole's last surgery....as i said before, dr cassel was visibly frustrated when the surgery was finally over] he said that the procedure that he did last time was not successful and so it probably would not be successful the second time around so he feels that cole's best chance is to have someone else with experience handling difficult cases to do it. we have not done any research on retina specialists yet so we are going to talk to his glaucoma specialist at duke before we make the final decision on who to take him to next.  we may decide to go back to duke if that is what dr freedman recommends. all we know right now is that cole can not be helped [surgically] anymore here in kc so...our journey continues.  we have been blessed by so many of you along the way and we are sooo thankful.  know that God is using you all to help us and that your prayers and gifts have been a huge blessing.  we have received meals, gift cards, and money from so many people...some that we do not even know! if it weren't for those gifts we would not have been able to pay our bills this month so thank you, thank you, thank you....i can't tell you enough how much it means to us.   

Posted by Posted by summer phillips at 4:01 PM
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a little bit better

3.15.2009


i apologize for taking so long to update the blog.  i needed some time to process.  as many of you know, cole had his cataract surgery wednesday march 11.  the surgery was scheduled for 5pm and we arrived at the hospital at 330.  the dr did not end up getting there until 630 and the surgery finally began at 745. it lasted four hours and the dr was visibly frustrated when he finally came to talk to us.  my heart was in my throat as he explained what he'd been doing for the last four hours.  they began by examining both eyes and checking the pressures [5 in right eye, 15 in left] he said infection was completely gone as expected from right eye.  then they removed the cataract and that was easy and fast.  he told us that the debris which they suspected to be there was much bigger and thicker than they expected and that is what they were trying to remove for the remainder of the time.  he said he removed as much as he safely could but that he did not get it all and he did not put the plastic lens in because they would have to go in and remove more debris.  he said he still did not get a good look at his retina but he still believes it is ok because of what the ultrasound was showing.  

so what does all this mean? well...cole will for sure need another surgery to remove the rest of the debris and to put in the plastic lens [that will be scheduled in about three weeks]  he told us he didn't know what cole would be able to see but that it would for sure be blurry because he has no focusing power without a lens.  he said that when cole told us he could only see black out of his right eye, he was right because of the massive debris that was in the way.  the dr said he tried to get all the debris out of the middle of the eye but there may still be some black spots. since the surgery ended so late, cole stayed the night at the hospital and got to go home the next morning.  
since the surgery cole has been doing pretty well.  he didn't open his eyes till late thursday night but when he did he told us that he could see better out of his right eye.  he says that it is blurry and that there are still some black spots but that it isn't all black like it was before so we are all encouraged by that.  cole continues to be a trooper and is excited that things are getting better.  thank you all so much for your prayers in all of this.  i guess we will still need some more...please pray that cole would heal quickly so we can do the next surgery soon. thank you all again for everything.  :) 

Posted by Posted by summer phillips at 9:27 AM
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surgery is scheduled!!

3.03.2009


we got to schedule cole's surgery today!  it will be wednesday march 11 at 5 pm.  he won't have to miss any school at all because he will be out for spring break :)  they will be removing the cataract, putting in a new lens and removing any remaining debris from the infection.  they will also be able to get a clear look at his retina for the first time since the infection.  if everything goes as planned he will be able to go home that day and won't have to spend the night in the hospital.  he'll have a patch on until the following day when we will go into the office.  we are all looking forward to next week, praying for a successful surgery and no damage to his retina so that next thursday his right eye will work again! i will post as soon as we know something next week! thank you all so much for your prayers! 

Posted by Posted by summer phillips at 7:52 PM
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