"I can see that McDonalds sign over there!" That was the first thing Ryan said after walking out of the eye doctors last week with his new glasses. That was after we pulled him away from all the mirrors in the place. He was certainly diggin' his new look! I am not sure if his comment was true or just a not so subtle hint that he thought a meal at McDonalds would truly complete his day. There were no burgers in sight that night, but according to him he can see now! They are staying on quite well and we are thrilled that he does not need another band around his head nor some goggle'ish looking eye wear! They are a little cockeyed in this photo because he had been messing with them...

Puzzling!

I am just not sure how this is happening...I have for all tense and purposes 3 hours to myself each day and I am utterly exhausted and have even less time than ever. I am suppose to have more time especially since everyone is on a somewhat normal schedule and children are in the same vicinity. What is happening here?!? All my big plans are just not going as planned. I hate to say how many hours have been spent in doctor's offices in the last week between two well child visits, a new patient visit to an ENT, and an excruciating visit to the eye specialist at the big "University" hospital in our area today. Then, there has been the chauffeuring Mike around as we attempt to get Herbie back on the road with his engine adjustments and wheels. There has also been the frantic sprint to complete the renovations enough so that the building and electrical inspector could come out and do a final inspection. Oh, dear! Good news is that we passed the inspection and the Certificate of Occupancy should be in the mail. Bad news is we still have lots of renovation work ahead and Ryan now needs glasses. Good news is the glasses got ordered today and it appears that he has enough "ear" to rest his glasses on and his BAHA band will secure it enough to hold the glasses in place and I have had an opportunity to have lots of waiting room "one-on-one" time with my boys.
Wish I could fast forward to Thursday and Friday as we have nothing written on the calendar except a trip to see the circus (part of Ryan's birthday gift)... Aaah...Calm mornings ahead, perhaps!?!

Marking the 2011 Calendar!!

God is good! The six figure digit is no longer the figure we are looking at for Ryan's surgeries. It does not appear like we are going to have to move, get a second mortgage on the house, nor will I have to go back to work...All scenarios that have been running through my mind since we started the entire process. Yes, we will need to cut back and be even more mindful of our spending, but we can do it!!
Ryan is scheduled to have his surgeries on February 23, 2011 and June 17, 2011. For each surgery, we will need to be in So. California for 2-3 weeks. At this point, the entire family will go back for the June 17th surgery and we will use that as our summer vacation. Although we need to be there for this length of time, each surgery is outpatient and there are a few days even a week between appointments. Depending upon the doctor's recommendation, we might be able to travel up to my sister's place (San Francisco area) a be there for close to a week. A third surgery will have to be scheduled with a different doctor at a later time in 2011 to implant the BAHA screw. So exciting to have the dates in place and reserved. Ryan is excited although he doesn't seem to grasp the concept that he will still need to wear his BAHA.
That is the update and we are thanking God every chance we get for this blessing!

Drum Roll, Please....

Although we never got the banner flying behind the airplane with our answer, we feel called to move forward with Ryan's surgeries. So, that is what we are doing. We are going to begin walking through those doors, all the while praying that God will shut the doors if this is not how we are suppose to proceed. We are excited and a little apprehensive all at once. We have contacted the dr's. office and are awaiting an answer regarding our insurance. Once we have that information, we will begin making the decisions necessary. Thanks to all that have prayed alongside us!!

Discernment

Well, we have had a lot on our minds lately... We have spoken to the doctors and we know what our desire for Ryan is, but we are still seeking confirmation as to God's will. Although our heart and desire is for Ryan to have the reconstructive surgery, we do not know with 100% certainty that it is God's will. So, we are seeking an answer. Is God using this dilemma to teach us something? Of course, He is! For one, He is drawing us closer to Him and closer to one another. Is he teaching me? You betcha - This isn't about a Mommy's heart or a little boy's appearance. I can clearly see all sides of the issue. Although one is much more desirable than another and much more "acceptable", is it the right path? These days I feel like I am on a teeter totter - one minute I am confident that we need to go ____ way and then several hours later I feel like maybe we need to go the complete opposite direction. Many of my "self talk" conversations go a little like this...
Yes, I want him to look like other children and for him not to endure any teasing and taunting. However, I know he will - just as Rylee and Morgan will most likely at some point in their lives for one reason or another. So, is that reason enough? Probably not. There is no reason to do the surgery for hearing purposes since that is no longer a possibility. Basically, it comes down to a "cosmetic issue". Most people don't even notice his ears when they meet him. God chose Ryan for us and us for Ryan - was it possibly for "such a time as this"? One of those purposes being that we could provide him with this opportunity that he would not have been provided with otherwise? I have such a great sense of peace regarding the surgery option and the doctor we have selected. So, is that God telling us to proceed? On the other side of the coin, God made Ryan this way. Does he want to use him as he was created to reach others or as part of his testimony?
That is just one little snippet of what is on my mind these days. Oh...I am so confused!! If you have a spare moment, please say a little prayer for us as we attempt to discern God's will. Stay tuned...

House Call

Today, the doctor called Mike and I. Let me clarify since everyone is officially now confused, this is the doctor that will perform the outer ear surgery/reconstruction. Inner ear surgery at this point is not happening. Although, we are waiting on that doctor in VA to call us as we have questions regarding the option of opening up an ear canal for the purpose of using a conventional hearing aid. The doctor seemed like a very nice man and we are looking forward to working with him. He answered the few questions that we had and got the additional information he was needing regarding Ryan. At this point, we are looking at the first surgery happening in January/February and scheduling the second in June. A six month window between surgeries is what he recommended. We will know more and have more specifics once his assistant is able to muddle through our insurance and once we figure out all the financial aspects. We are not looking at the same expenses as we were when we were considering the combined surgery, but it is still a very large sum that is upfront and out of pocket. It is very comforting feeling a peace about the whole process and the doctor. We are so grateful for those that have walked before us. While it is still months away, we are excited for Ryan and the path ahead!!!

Atresia Repair - Option or Not An Option?!?

Today, we received a phone call from Dr. #2 regarding the atresia repair surgery (inner ear reconstruction). And, the answer was the same as Dr. #1. Atresia repair surgery is not an option for Ryan. He scored a 4-4.5 in his right ear and a 5 in his left ear. Obviously a 40-50% chance of restoring hearing is not enough to justify the procedure or risk. This doctor was so nice and if anyone is looking for a good ENT in the state of Virginia, email me!! We are thankful that God has been so gentle with us along the way and that He has given us such great peace!! We will review this doctor's written report once we receive it and may ask a few questions as he did mention surgery for the purpose of wearing a traditional hearing aid. This door has closed and we will begin to walk down this next path of outer ear reconstruction. We appreciate all the thoughts and prayers that have gone out concerning Ryan and this particular surgery.

Check...Check...Wait

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!!

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.

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.

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!

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...

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!!

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!!

Note to Self...

When attaching another contraption to your child's head, you must warn the teacher!! :o) They were a little confused at school today and were unsure what to do about the FM system that plugs into his BAHA at school. When they asked Morgan about the 2nd BAHA, he threw up his hands and said he had no idea!

Today we went to Cincinnati Children's for Ryan's hearing evaluation. We had not been in 9 months - yikes! It took Ryan a few minutes to get acclimated to the whole stimuli/response process, but once he settled in he was ready to rock and roll!! He was not at all thrilled with the tight fitting earphones and let the audiologist and her assistance know they were not comfortable and that the whole procedure was taking way too long! I had no idea until I came out and looked at the clock that we had been in there for over an hour! Evidently, the audiologist has seen evidence to support that two BAHAs are making some significant differences for some of her patients. upposedly, the extra BAHA is helping some children better localize the sound and is helping them discriminate between some phonological sounds. A few weeks ago, I truly realized that although Ryan can hear my voice, he is unable to distinguish where it is coming from. He was wandering through the house trying to find me while calling my name. I was in Morgan's room hanging something up in his closet and asked Ryan what he needed. He began asking where I was - By the way, he was in his room right next to Morgan's room. So, I decided to play a little game with him and instructed him to follow my voice. Well, he was all over the house, upstairs and downstairs, trying to find me. I was completely shocked at his inability to find my location! So, when the audiologist asked me if we wanted to give it a try, I told her we open to trying it out and seeing what happens. This morning, Ryan wanted no part in wearing two BAHAs, but this afternoon opened up to the idea and actually requested it. It will be interesting to see if there will be a significant difference noticed here at home or at school. Not sure if we will proceed with a second one as we are still unsure as to the time line of the surgeries and exactly what route we are taking regarding surgery. The audiologist did feel fairly confident that even after the surgery that he will need a device for amplification as most children do even after the surgery. However, after the surgery he might be a candidate for a regular hearing aid as he would then have a middle ear and an outer ear to hook it around. Well, that is the update for now... Still more decisions to be made and lots of observing over the course of the next two weeks! So, how do you wear two BAHA's? Just like this... I hope he won't interfere with all the wireless technology out there as this little boy is wired!

Ryan's New Exercise Regimen

After 7 weeks, we were finally able to get back to speech therapy. The snow days all seemed to fall on the days we were scheduled for therapy and then last week Ryan was sick. It was great to get back to work. After talking more with the therapist, we believe that it is crucial that Ryan strengthen his tongue and jaw muscles and gain more control over them. We believe that this might help him with his sounds as so many of them are very lateral and sound so sloshy. When in a conversation, it becomes even worse as the conversation progresses as his muscles might be weakening So, we will be using a crazy straw to drink from, chew gum, eating Tootsie Rolls and Starbursts, encouraging him to eat with his mouth closed more often (he is really bad at smacking his food), and then sticking a raisin or peanut butter in the bottom pockets of his gums and getting him to retrieve it with his tongue. I do not know if this lack of strength and control is due to his diagnosis or due to the fact that he was not really eating table food prior to coming home. I am hopeful that this will help him and that we might begin seeing some progress in the weeks to come!

After 7 weeks, we were finally able to get back to speech therapy. The snow days all seemed to fall on the days we were scheduled for therapy and then last week Ryan was sick. It was great to get back to work. After talking more with the therapist, we believe that it is crucial that Ryan strengthen his tongue and jaw muscles and gain more control over them. We believe that this might help him with his sounds as so many of them are very lateral and sound so sloshy. When in a conversation, it becomes even worse as the conversation progresses as his muscles might be weakening So, we will be using a crazy straw to drink from, chew gum, eating Tootsie Rolls and Starbursts, encouraging him to eat with his mouth closed more often (he is really bad at smacking his food), and then sticking a raisin or peanut butter in the bottom pockets of his gums and getting him to retrieve it with his tongue. I do not know if this lack of strength and control is due to his diagnosis or due to the fact that he was not really eating table food prior to coming home. I am hopeful that this will help him and that we might begin seeing some progress in the weeks to come!

Running in Circles

There is no other word to explain it right now except frustration. Ryan's speech is coming along and he seems to be fairly intelligible the majority of the time. However, his listening skills and command of the language is a very different story. He has been tested recently and in many areas he is ahead of where he should be developmentally (by a year or two). Yet, we keep finding these gaps in his language. For example, he has a hard time using the pronouns he/she and his/her. His auditory memory skills seem to be behind as well. When reading a very simple two-three sentence "story" to him, he is not able to recall the information to answer a question. This leads to another area where he is experiencing a great deal of difficulty - questions. Just this morning while riding in the car, he was not being kind to his sister. So, once we got home I asked him "Are you ready to use kind words and come in and play or do you want to stay here until you are ready to be kind?" Well, what did he hear ... "stay here" That then led to a full on meltdown. Errr!!! A lot of times, it just doesn't connect and I have no clue what to do!! It seems like I am running in circles. We are doing so many things to foster his language and surround him with language. He has great role models, we read constantly to him, have a table with a book on tape at it, educational listening toys (TAG reading system - Leapster - etc), preschool environment, etc. In fact, he is so surrounded that he is beginning to try to read. I have not held him back from trying to do so , but have also done nothing to foster that as I know our main focus needs to be these other areas. I know those are two very different areas of language, but they are dependent upon one another. Thus, the frustration!! At this point, I need to do some online research and most importantly place it in the hands of God!!