Ryan had his CT scan yesterday - check. He did an awesome job lying still considering he is an active little guy. They did not sedate him and I do not believe that it was even an option for them. I don't know what we would have done if he hadn't been so cooperative. He got a little upset when I told him that we had to take his BAHA for the test. I can't say I blame him. To have to go through a strange situation around huge equipment and not have your hearing to rely on would have probably thrown me over the edge. He knows that we are doing all these tests for his ears and that the doctors are going to give him "big ears". So, I believe that is why he has been so cooperative. We have never gone into the inner ear explanation, which is probably a good thing at this point, as we knew he would not be a concept he would grasp. So, whenever we go to an appointment now he wants to know if it is regarding his eyes or ears! So, the CT scan was yesterday and I picked up and mailed the disc and audiogram to Dr. #2 today. - check Whew!! Now we wait again. We hope to have some answers late next week - Side note: I made up that time and it is probably wishful thinking! It will be a wonderful feeling at least knowing what our options are or are not so that we can begin planning. Please remember another family this week as they travel to CA to begin their surgeries for their son with bilateral microtia and atresia!!
Friday, June 4, 2010
Thursday, May 27, 2010
Do You Hear It?
The angels singing? Believe it or not, I actually SPOKE TO SOMEONE ON THE PHONE!!! Yes, someone answered the phone when I called today! We have the go ahead to get a new CT scan done by the 2nd May 2008 doctor mentioned in our earlier post. So, I will hopefully be able to have our pediatrician begin that process and we will get that scheduled soon. Once again, we don't think there will be much difference as both doctors use the same rating scale. But, I do know that God is God and He has moved mountains when it comes to Ryan. I know. I know. I keep saying that, but it is true and we fully believe it. We are fully prepared that Ryan won't be a candidate now that the shock has worn off, but would not be surprised if there "happened" to be a change in the results.
Friday, May 21, 2010
Speechless...
Hmmm...
May 2008 Our ENT says that Ryan is a good candidate for surgery and even says that we might need to schedule it a month later so that he has a greater opportunity to develop language.
May 2008 A surgeon reads Ryan's CT scan and lists out everything in technical terms about what is present in Ryan's middle/inner ear structure, but requests that we send information once Ryan is closer to 5 or 6 years of age.
May 2010 (yesterday) A different surgeon tells us that Ryan scored a 3 on his right ear and a 5 on his left ear on a 10 point scale. 3 = 30% chance of restoring hearing 5 = 50% chance of restoring hearing. This surgeon does not recommend surgery for scores 0-5. His recommendation is a BAHA. Now, that is our interpretation of the results as we understand them via web information. We have yet to speak to anyone by phone and have just been communicating by email.
Based on all the previous doctor interactions, I never anticipated these results! I am puzzled and just merely shocked!! I was prepared for one ear not being a possible option, but never thought that both ears would be out of the question.
Where do we go from here? We will go back to the other surgeon that was requesting information and have another CT scan just as a second opinion. If he scores the scans differently (which does not appear very promising) then we will take it from there as far as decision making goes. If not, we will continue to look into the outer ear reconstruction and putting the post in for his BAHA. At this point, the combined surgery (outer and inner ear) is not an option for Ryan.
Although we are shocked, we are thankful that God is guiding us and closing the doors for us along the way.
May 2008 Our ENT says that Ryan is a good candidate for surgery and even says that we might need to schedule it a month later so that he has a greater opportunity to develop language.
May 2008 A surgeon reads Ryan's CT scan and lists out everything in technical terms about what is present in Ryan's middle/inner ear structure, but requests that we send information once Ryan is closer to 5 or 6 years of age.
May 2010 (yesterday) A different surgeon tells us that Ryan scored a 3 on his right ear and a 5 on his left ear on a 10 point scale. 3 = 30% chance of restoring hearing 5 = 50% chance of restoring hearing. This surgeon does not recommend surgery for scores 0-5. His recommendation is a BAHA. Now, that is our interpretation of the results as we understand them via web information. We have yet to speak to anyone by phone and have just been communicating by email.
Based on all the previous doctor interactions, I never anticipated these results! I am puzzled and just merely shocked!! I was prepared for one ear not being a possible option, but never thought that both ears would be out of the question.
Where do we go from here? We will go back to the other surgeon that was requesting information and have another CT scan just as a second opinion. If he scores the scans differently (which does not appear very promising) then we will take it from there as far as decision making goes. If not, we will continue to look into the outer ear reconstruction and putting the post in for his BAHA. At this point, the combined surgery (outer and inner ear) is not an option for Ryan.
Although we are shocked, we are thankful that God is guiding us and closing the doors for us along the way.
Tuesday, May 11, 2010
Answers. Today. Hopefully!
Well, I received an email this morning saying that Ryan's records are in the doctor's inbox for review. She indicated that we might hear something later this afternoon!! Hopefully, he will be able to read the scan and that we won't have to go for another one. Hopefully, we will have some answers as to whether he is a candidate for atresia repair. By knowing this information, we can begin to process the whole kaboodle, begin to map out a plan, and begin to research if there will be any insurance coverage or not. It is a step-by-step process at this point for us. Stay tuned - Hope to post some news again tonight!
Sunday, May 2, 2010
Overwhelmed!
That is me... Really trying not to be, but am nonetheless. After a week and a half of waiting, we spoke to the doctor's office in CA regarding Ryan's surgeries. I was half crazy (okay, maybe more than half crazy) waiting for them to return my calls last week and began questioning whether or not we should even be walking down this path. It was merely my lack of patience and anxiousness to get the ball rolling in MY time! Thankfully, God's timing is perfect and the woman called while Mike was home. She was so nice and even though our hearts are heavy over how we are going to make this happen, we know that God already knows the plan. Earlier that day, I was frustrated beyond belief and decided that I was just going to go ahead and send in the CT scan and audiogram to them. I knew the doctor would need these to review in order to assess whether or not Ryan was a candidate for aural repair (canalplasty - creating the ear canal, ear drum, etc) and figured someone would have to call me then. Yep, me trying to gain some sense of control. Well, those should arrive in CA tomorrow and the doctor will be in on Tuesday and Wednesday of this week. Hopefully, he will have time to review them this week and then we will know what our options are for Ryan. I know without a doubt that God is going to teach me some valuable lessons through this whole experience. Whether we are able to go through this entire journey or not he is going to teach me the lessons that He wants me to learn! Just knowing some of our "road blocks" I know that we are going to have to lean and trust Him more than we may ever have before...
Wednesday, April 21, 2010
Decisions Decisions
We just have too much going on around here and we have had to make too many decisions lately... So, I am have decided that I am done making decisions and that is the last decision I am going to make. Okay, that lasted a grand total of 10 seconds. I have absolutely no desire to have a house built. Light fixtures - can, hanging, or ceiling mount? How many outlets on a wall? What kind of carpet? What color carpet? What sort of pile on the carpet? What paint color? Which of the 2400 shades of that color? Paper or plastic? Ooops - Earth Day is tomorrow - That really shouldn't be a question! Back to the point, one decision then leads to five other questions.
Yes, we are in the midst of renovating, but as of now we are in the midst of pursuing surgery for Ryan. As of Sunday, we made the decision to pursue Medpor surgery for Ryan's outer ear reconstruction. I made the initial phone call yesterday and have yet to receive a return phone call. We do not know much at this point except we believe that this is the best option for Ryan. If Ryan is a candidate for the inner ear reconstruction, then we will pursue a combined surgery in which two or three renowned doctors (one of which 'invented' the Medpor surgery) will assemble in one location (northern California) and perform both surgeries (inner and outer ear) in one very long surgery on one ear. We would return several months later for the second ear. Still lots of unknowns especially with regard to insurance coverage (if any), but we are moving forward and will see where this journey takes us. We know without a doubt that God brought this little boy into our lives for a reason and that He will take care of the details. He will guide us along the paths necessary to get Ryan where He wants him to achieve the purpose He has for Ryan's life!! I believe this wholeheartedly! Am I still a little scared and unsure? You betcha!!
Yes, we are in the midst of renovating, but as of now we are in the midst of pursuing surgery for Ryan. As of Sunday, we made the decision to pursue Medpor surgery for Ryan's outer ear reconstruction. I made the initial phone call yesterday and have yet to receive a return phone call. We do not know much at this point except we believe that this is the best option for Ryan. If Ryan is a candidate for the inner ear reconstruction, then we will pursue a combined surgery in which two or three renowned doctors (one of which 'invented' the Medpor surgery) will assemble in one location (northern California) and perform both surgeries (inner and outer ear) in one very long surgery on one ear. We would return several months later for the second ear. Still lots of unknowns especially with regard to insurance coverage (if any), but we are moving forward and will see where this journey takes us. We know without a doubt that God brought this little boy into our lives for a reason and that He will take care of the details. He will guide us along the paths necessary to get Ryan where He wants him to achieve the purpose He has for Ryan's life!! I believe this wholeheartedly! Am I still a little scared and unsure? You betcha!!
Decisions Decisions
We just have too much going on around here and we have had to make too many decisions lately... So, I am have decided that I am done making decisions and that is the last decision I am going to make. Okay, that lasted a grand total of 10 seconds. I have absolutely no desire to have a house built. Light fixtures - can, hanging, or ceiling mount? How many outlets on a wall? What kind of carpet? What color carpet? What sort of pile on the carpet? What paint color? Which of the 2400 shades of that color? Paper or plastic? Ooops - Earth Day is tomorrow - That really shouldn't be a question! Back to the point, one decision then leads to five other questions.
Yes, we are in the midst of renovating, but as of now we are in the midst of pursuing surgery for Ryan. As of Sunday, we made the decision to pursue Medpor surgery for Ryan's outer ear reconstruction. I made the initial phone call yesterday and have yet to receive a return phone call. We do not know much at this point except we believe that this is the best option for Ryan. If Ryan is a candidate for the inner ear reconstruction, then we will pursue a combined surgery in which two or three renowned doctors (one of which 'invented' the Medpor surgery) will assemble in one location (northern California) and perform both surgeries (inner and outer ear) in one very long surgery on one ear. We would return several months later for the second ear. Still lots of unknowns especially with regard to insurance coverage (if any), but we are moving forward and will see where this journey takes us. We know without a doubt that God brought this little boy into our lives for a reason and that He will take care of the details. He will guide us along the paths necessary to get Ryan where He wants him to achieve the purpose He has for Ryan's life!! I believe this wholeheartedly! Am I still a little scared and unsure? You betcha!!
Yes, we are in the midst of renovating, but as of now we are in the midst of pursuing surgery for Ryan. As of Sunday, we made the decision to pursue Medpor surgery for Ryan's outer ear reconstruction. I made the initial phone call yesterday and have yet to receive a return phone call. We do not know much at this point except we believe that this is the best option for Ryan. If Ryan is a candidate for the inner ear reconstruction, then we will pursue a combined surgery in which two or three renowned doctors (one of which 'invented' the Medpor surgery) will assemble in one location (northern California) and perform both surgeries (inner and outer ear) in one very long surgery on one ear. We would return several months later for the second ear. Still lots of unknowns especially with regard to insurance coverage (if any), but we are moving forward and will see where this journey takes us. We know without a doubt that God brought this little boy into our lives for a reason and that He will take care of the details. He will guide us along the paths necessary to get Ryan where He wants him to achieve the purpose He has for Ryan's life!! I believe this wholeheartedly! Am I still a little scared and unsure? You betcha!!
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