Walkin' A Tenth of A Mile...

in Ryan's shoes! Whew!! What a week it has been... After the kids got sick, I got sick. I figured it would turn into the croup that kids had, but it appeared it was just the common cold. That is until Sunday came around... Within a matter of minutes, my ear was giving me problems. I mean this was like a night and day thing - one minute I am fine and the next minute my ear is driving me crazy (really crazy)...There was no easing into it, it just happened. So, I go into the clinic and the nurse tells me that my ear is extremely red... Figuring it is an ear infection, I get my antibiotics and go home... By that night, I can not hear anything out of that ear. After five days of not hearing anything out of my ear, I return and am now on another round of stronger antibiotics. I have no idea how to describe the noise that I am hearing in that ear, except to describe it as a "white" noise...It is extremely annoying especially when I am out in public with all of the background noise - I have had a hard time assessing my voice level and thus have been whispering without knowing - Mike was beginning to think he had problems with his hearing. Thankfully, the family is being very patient with me. I have to say that although it is very frustrating and annoying, I could describe it as a gift. Although this is not exactly what Ryan is experiencing, it does give me a little insight and even more empathy for the little fella! One night, I decided to try out his BAHA on the side that I am unable to hear out of and I must say I could hear and it was crystal clear!! The sensory overload is amazing...When taking a shower, I can hear every drop pounding my head - it almost sounds like rain on a tin roof (no snide comments necessary ;o) !). When drinking water, the sound is magnified and sounds like waves swishing...The chewing will drive you up the wall!! At night, I can hear every time my heart beats - that is especially annoying as it is not exactly soothing when you are attempting to sleep. I do not know if that is what Ryan experiences and I will probably never know as he has not known anything different nor does he have the language yet to describe for me what he hears. I can now understand why he is so loud even with his BAHA on and why he is especially loud at meal time. I can now understand why he sometimes has difficulties when out in public. I knew these things, but to actually experience them firsthand gives you a whole different perspective and understanding. As I said, this is probably no where near what life is like for Ryan, but God has granted me a little insight and for that I am so thankful!!

A Year!

Wow! Today it has been a year.... I remember last year at this time sitting by the computer waiting and wondering...What would my little boy's personality be like? Was he healthy? Could he hear anything? What does he like? Would he like Mike and Morgan? So many questions running through my mind. On the other side of the world, Mike and Morgan were meeting this precious gift that God had moved mountains to unite with our family. I can remember Mike saying (via instant messaging) that he was a chunk...It was later that night while he was peeling the layers of clothing that inside was really a much thinner child. Morgan recalls Ryan's screaming and crying as the orphanage officials handed him over to Mike. He also remembers Ryan bolting for the door determined to get away. I can remember hearing him making noises and yearning to be there to hold him! A year later, this child is so much more than we could ever have imagined and still God is moving mountains in his life! He brings a balance and joy that we never would have known was missing in our lives. He is a strong little boy that takes everything in stride. He still loves cars and trucks, but loves his turtle even more! He melts the hearts of those who meet him and is quite the adventurer. He has a gentle spirit and we have great confidence that God is going to use this little boy in mighty ways! How we can't wait to see his story unfold even further...We love you little fella - We wouldn't be the same without you!!

Ryan is loving school. Morgan reports that all of the teachers they pass on the way to Ryan's classroom smile and wave to him. He is singing some songs now and the other day while walking circles around our kitchen table, he said "Monday, Tuesday". Guess he is getting the concept of the calendar at circle time! Last night, in an attempt to get them to follow my directions, I said out of frustration "Oneee, twooo..." and then stopped. He came back into the room and held up three fingers and said "three" as if I had forgotten what number came next. He is a funny little fella! Recently, my days have been spent washing underwear and sheets as he is going through another wetting spell. Not sure what is going on as we went through the same thing about a month ago.

Signed, Sealed, and Final!!

Ahhhh!

Yes, there are many things in life that I have waited anxiously for...The day we got married, Morgan to be born, the day we left for China to meet Rylee, Mike and Morgan's arrival home from China, and for this little, white box to show up in our mailbox. What is it, you ask? The replacement BAHA - Who knew exactly how delicate this little contraption is! While Ryan took his shirt off last weekend, the BAHA fell to the floor from his level (as it had done before). After doing so, I put it back on him and it began making horrible, amplified, crackling sounds. I tried troubleshooting the problem (changing batteries, tapping the processor/black box, etc) and could not get it back into running order. Let me just tell you.... It was the longest week waiting for the problem to be resolved! Ryan had temper tantrums because he could see his soft band and wanted his "BAHA" right then and there! He was constantly screaming, yelling "What?, What?", and was just generally out of sorts. Add on to all of this, his first week of school and not being able to understand everything going on around him. It was very trying and stressful for us all. Seeing that little, white box in the mailbox today brought a sense of peace. After opening it up and reattaching the processor to the band, I took it down to Ryan and announced "BAHA fixed!" - Oh, how I wish I had my camera handy. His face lit up and we all did the "Happy Dance!" All I can say is "Aaaaaahhh!"

Ryan's First Day

Our baby is off to preschool. He is attending Morgan's school for preschool this year. Here, he will receive the services (speech therapy and deaf education support) necessary to increase his language skills. He is going Monday through Thursday for 3 hours each day. Today was his very first day. It is amazing how we continue to learn important lessons about parenting even with child #3. We spent some time debating whether or not we should drop him off in the drop-off circle or walk him into the school for the first couple of days. After much debate, we decided that for him he needs to start off with whatever will be the routine (much like Morgan). So, Mike dropped Ryan and Morgan off in the circle. Although it is imaginable to think that we just dropped him off and did not go in to check on him, I have learned that it is our responsibility as parents to do what is the right thing for our children and not what we have to do for ourselves. I am 100% confident that he was well cared for during the walk to his class as a teacher walked him directly there and that all of his needs were met during his day. So, we have to place our trust in God's hands. When I picked him up from school, he was happy to see the van in the pick-up circle. The teacher reassured him that I was there and even moved him so that he could keep his eye on our van. A sweet little "Hello! Mommy!" could be heard. It is hard to believe that he has only been with us 8 months tomorrow. He is still learning many things one being that Mommy and Daddy will not leave him and that we will be there for him! As I expected, I did not get much out of him as to what happened at school. It doesn't help that his BAHA is not working properly (making horrible, loud crackling noises) and he has not been able to wear it for 3 days. Hopefully, the drop-off process will go smoothly tomorrow!

Look At Me...I'm THREE!!!

Ryan's first birthday with us! He was not quite sure what to think of everything. He watched Daddy make his fire truck cake (a whole other story) two nights in a row and could not understand why he could not have any. Since he kept being told "not today" he has obsessed about the cake every day. During our early morning run to buy a cake at the grocery store this morning, he got upset because we looked at all these cakes but did not leave with one. After store number 2, he insisted on "brown cake"! No use arguing, if that is what he wanted, that was what we were getting - I am thinking he figured he better be adamant about it or he would not be getting one. So, tonight he had "brown cake" and enjoyed every moment of it! He did not question the whole ritual of opening presents and looked so surprised when he found things he recognized (GeoTrax sets). But, he looked at us like we were crazy the entire time we sang "Happy Birthday". About 3/4 of the way through our rendition of "Happy Birthday" he belts out "Whaaa you doin' ?" (see cake picture above). We kept on singing and then proceeded to explain that he needed to blow out the candles. He got one blown out on the first try and eventually he needed some help with the other two. What a joy he is and we can't wait to celebrate many more birthdays with him!!

Oh...the cake saga. Mike was making Ryan a fire truck cake. The first night, he baked it, figured out the logistics/design, and also cut out the shapes needed to make it 3 dimensional. Last night, he began decorating it. He decorated both sides, stuck it in the freezer, and then called me to help put it together. Well, we don't know what happened, but it literally began falling apart as I was holding it in place for him...He was not happy to say the least. Of the 10 or 11 birthday cakes he has made for the kids, this is the first that did not make it to the table. He worked hard and gave it his best...There is always next year...

Aaah...

Ryan had appointments at Cincinnati Children's Hospital today. He saw both the audiologist and Dr. Choo. The audiology screening went incredibly well and they were able to teach Ryan in no time to place a ring on the toy and to drop a toy in the bucket when he heard the tones and sounds. He did great and we got even more information than the last test as they were able to use the headphones to isolate each ear. With the bone conductor on, his results were consistent with the test back in late March. He has a slight loss (with the bone conductor on) in the 2000 level. Other than that, it is within the normal range with his BAHA. Without his BAHA, he has a moderate conductive loss in his right ear and a moderate to severe loss in his left ear. Dr. Choo was great and really we do not have any decisions to make until he is between 5-6 years old. At that time, we will have decide whether or not to move forward with a canalplasty (reconstruction - construction in Ryan's case of the ear canals, ear drums, and bones). We believe the BAHA saga is taken care of with our insurance company which was a huge headache so, we believe we are finally on the way to Ryan having his very own BAHA and are now sure that the BAHA is serving him well! We are now on the 6 month cycle and will not need to take the trek up to Cincinnati as often as we have since Ryan arrived home.

Oh my goodness...I had no idea!

A woman from church who has been waiting for her grandchild for a long time now came up this past Sunday to show me the referral pictures that they had received last Monday. The little girl was precious and I am so excited that another family is finally bringing home their baby girl. After looking at the photo, I had to wonder where we would be right now if God had not led us to Ryan. I was shocked to see the results of an online calculator that is watching the statistics of China's adoption referrals. Now mind you, paperwork was logged into China on November 21, 2006. Based upon this calculator, we would not be receiving a referral until April 28, 2010 and another site said October 29, 2012. This was a total shock and I am just dumbfounded - For Rylee, we waited 8-9 months. In a year's time, the wait has changed to 3 years and 5 months (in the very least, if these calculators are in any way accurate). Now, I do realize that it could turn around the other direction in that same amount of time...doubtful, but entirely possible. I am thankful that we did not have to totally endure this long wait and hope the long wait time will not deter families from considering adopting from China as there are so many in the orphanages needing a family!!

Family Learning Vacation

This weekend, we went on a learning vacation. The Kentucky School for the Deaf in Danville, KY sponsors a Family Learning Vacation for families with children who are deaf or hard of hearing. We signed up many months ago before knowing Ryan's full diagnosis. Although we did not learn a lot of "hands on" things, we were able to take away a few things...It was a great idea as they have workshops during the day and the children are provided with a variety of age appropriate activities while the parents are in the workshops. Then, at night family activities are provided. One of the best parts of the weekend was the fact that they did a sibling workshop - they separated the hearing students from their groups and talked with them about their feelings and experiences having deaf/hard of hearing siblings. Morgan was a little uncomfortable going into the room with deaf/hard of hearing and hearing children that he did not know, but seems to have enjoyed the experience. Rylee went in with Ryan with no problem and had no problems communicating and playing with the other children and workers. Mike felt like a fish out of water - both with the special education acronyms/terms, etc. and the fact that he did not always know what people were saying/signing. I felt like the clock had been reversed 18 years and that I was back in some workshop at Fresno State. Most of the families there were much like ours, hearing parents with a young child with a hearing impairment. The majority of the children had cochlear implants or wore standard hearing aids. Ryan was the only one with a BAHA (or "HA HA" as Ryan says) - some had heard of a BAHA, but had never seen one and others had never even heard of the BAHA. Although we are not sure we will return next year, it was a good learning experience!!

Twists and Turns...

yet moving forward!! This whole process has been one wild ride. Although it has been a winding journey, every step of the way we have felt peace and have felt that we are making some progress (no matter how small). We made another trip to Cincinnati Children's today as the doctor wanted to meet with us face-to-face. As we suspected, he has recommended that we postpone Ryan's surgery until he is older. We are thankful for his recommendation as we were prepared to tell him that we were going to opt to wait on the surgery, if he had given us the choice. His last test results have shocked everyone involved - not sure why this surprises us after all that we have witnessed since we first saw Ryan on the agency's website... We will continue to monitor Ryan's speech and language closely to insure that he continues to progress and he will continue to wear his BAHA. Within the next 6 months, if the BAHA continues to serve him well, we will consider taking it off the soft band and having the titanium rod implanted so that he can wear it that way. We will then postpone the surgery until he is 5-6+ years old. We are so blessed to have such wonderful resources in our area and it has been an awesome experience to witness Ryan hear the sounds that we take for granted each and every day!!

Amazed

Once again, we stand in amazement at the progress we have seen in Ryan....This past Wednesday, we went up to Cincinnati Children's for another audiology evaluation...Oh my goodness...It was like night and day. Ryan was ON FIRE!!! I could hear the audiologist squealing on the other side of the booth...This whole process of trying to figure out the extent of his hearing loss has been quite the emotional roller coaster. We knew with 100% certainty that this was the child God had chosen for our family and were 95% prepared to parent a child that was deaf if that be the case. We have never doubted the fact that there was some hearing, but from one appointment to the next we never really knew the extent. I constantly had various questions rolling around in my brain - "Is he going to be part of the deaf community or lean more to the hearing community?", "Will he need more services than the local school district can provide or will he need a school for the deaf (there are no interpreters in our school system at this time)?" - Factors that other people may not otherwise consider right way were constantly surfacing due to my background (communicative disorders/deaf ed. degree - I am discovering that many people did not know I had that, did you?? Well, that is an entirely different post that I will save for later).... At one point, the audiologist had reason to believe there was permanent hearing loss as he was not responding in the ways typical of children with this same condition. After 5 weeks with his BAHA (bone anchored hearing aid), I can tell you that on Wednesday his audiogram came out in the normal to slight hearing loss range...Yes, with his BAHA and 5 weeks of adjustment to it, he is hearing within normal ranges!!! We are now waiting for the doctor to contact us to see if he still wants to proceed with the surgery. We are 100% fine accepting his recommendation because our ultimate goal has always been to get Ryan's hearing to the highest of his potential. Ideally, the doctor wanted to wait until he was older, but because he was not hearing certain sounds in speech and the need for early intervention, he felt that was the only option. Now that we have some awesome test results, we will have to see where it all goes from here.

One Cool Lil' Fella!

Well, another trip to Cincinnati Children's Hospital down and finally some questions answered! As you can see from the picture, Ryan has a new "hat" as he would call it! It is the BAHA (bone anchored hearing aid) with a soft band (an older child would have it attached to the actual bone behind the ear). When the audiologist put it on him, his eyes got really big and he sat so still for the longest time. It was like he was hearing sound for the first time. We went through the hearing evaluation with the BAHA on, but he did not respond as much as other children with this same condition do. Ryan does not hear the high frequency sounds and the BAHA will help him, but not enough to make a significant difference. We are trying it for a month and will then go for another evaluation. He is beginning to grasp the concept of what he is suppose to do in the audiology booth and was asking for the dog that lights up. Lots of progress made since our first trip there where he had no idea what was going on. After our hearing evaluation, we met with our doctor to review the CT scan...He went over the CT scan with us which pretty much blew us away. Basically, Ryan has no outer or middle ear structures. Where the opening of an ear canal would be, it is bone and beyond that is no ear canal, ear drum, and only 1 of the 3 bones (malleus, incus, stapes) are present. His inner ear is fine. Amazing that this little boy can hear at all. The stapes appears to be present on the right side and all 3 may be present in the left ear (still a little sketchy on this). Due to this fact, the dr. said that "my hand has been forced"...Ryan will not be able to hear the high frequency sounds unless his ear canal is opened as the BAHA will not do it and there is no way to use a regular hearing aid at this point (lack of ear to attach a hearing aid and lack of opening). So, based on this fact and the importance of his age in the development of speech, they are going to open up his right ear by making an ear canal, ear drum, and the additional bones (taking a skin graft -sp?- from his hip)...We will pursue the other ear in the future. So, Ryan will have his surgery on June 13th...The procedure will take 4 1/2 hours and will be "outpatient"/staying 23 hours in the hospital. While we were talking, I said to the doctor something about the in the ear hearing aid that he mentioned we would be able to use after the surgery and he said that there may not even be a need for a hearing aid afterwards...I was blown away...Who ever thought that no aid might ever be an option!!! How awesome!!! It has been so amazing to see God's hand in this whole process...

Update

A quick update: Ryan had his second hearing test and the CT scan at Cincinnati's Children's Hospital on Wednesday...Although he responded better this time, the audiologist was not satisfied with the results so, we go back again in 3 weeks - They wanted to wait another month, but we are anxious to get this moving along as we feel that every week that he has to go without any aid with his hearing is another week that he is losing language. On Friday we received a phone call from the hospital about the CT scan. Unfortunately, all the nurse could say was what the dr. had written in his notes (which did not answer our immediate questions). Basically, all we discovered is that his CT scan showed results that were consistent with other children with this same condition (whatever that means) and that he would be a candidate for reconstructive surgery if we/he chose to go that route. Our immediate questions involve knowing what actual structures he does have and whether or not each is working. Mike will be making a call to the doctor this week to get some of those answers. Ryan began receiving services this week...He has a speech therapist and a deaf education teacher from our district coming once a week. We are using both speech and sign with him and it has been so amazing to watch him grow! He is picking up new words every day!! We are finally beginning to understand one another! YIPPEEE!!!

The Big Scheme of Things

I know it has been a long time since my last post, but it has been crazy at our house. We are taking it day by day and getting through it all. We have had a sick child in our house for 14 days now...It all began with Morgan and was passed along to Rylee and now Ryan has it...He ran a high fever for 6 days straight. Scared me to death since we are still learning what is his "normal" and "not normal". Yesterday, we made our trek up to Cincinnati's Children Hospital for his initial visit with a pediatric otolaryngologist. Oh my gosh, the hospital was amazing...So huge (like an airport) and child friendly! We were very impressed with everyone's helpfulness and friendliness. Unfortunately, it takes trips like this sometimes to see how blessed you truly are. Seeing some of the children, we know how minor Ryan's medical issues are in the big scheme of things - Though we are going through some major transitions and still face some obstacles, they are so minor in the big scheme of things. While at the hospital, we talked with a resident briefly and he used a metal tuning fork type instrument to see how Ryan would respond. Ryan is much more apprehensive with males so, that was not a very productive little evaluation. We were then escorted to the audiology waiting room where we met another mom with her little boy that was adopted from China and had the same condition (microtia in just one ear). From there, we went to see the audiologist who gave him a screening. Our little guy responded a couple of times, but was more interested in the toys the audiologist was using to distract him than he was in being attentive to the sounds. They then tried the test with a bone conductor aid and he did about the same. There was not a significant enough difference between the test with and without the bone conductor so, she spoke to us about the BAHA (bone anchored hearing aid) - which is what he will probably end up using except in the soft band form. (The aid can not be anchored to the bone until the child is a bit older.) She requested that we return in 3 weeks to retest him. They will try testing him 3 times before they will resort to the brain stem response test as they do not want to have him under anesthesia unless absolutely necessary. After the test and consult with the audiologist, we spoke with the main doctor himself who has many patients with this same condition. He gave us the big picture and the options that could possibly be available to us. Thankfully, we see eye-to-eye on everything: Establishing as much hearing as possible and as soon as possible is our main priority. Cosmetically, they can not do anything until a child is 5 years old and we have plenty of time to consider those options - if we chose to do anything. He ordered a CT scan and will use that to determine the temporal structure of both ears and that will answer more questions for us. Ryan is scheduled to return on Feb. 27th for another hearing evaluation and his CT scan. He will go to the University of Kentucky on Feb. 12th for an echo cardiogram and ultrasound of his kidneys. Due to the fact that the ears, heart, and kidney develop around the same time our pediatrician wants to be sure that everything is functioning properly.

New Hat!

Well, it is official...I wear a new hat these days. Maybe I should rephrase that - I have a new wardrobe; Black and white striped shirt(No,they've not sent me to prison), black pants, whistle around my neck and a penalty flag in my back pocket. Whew! It has been crazy around here, but I believe it is slowly beginning to smooth out a little. Rylee is beginning to adjust to the changes, but is a STRONG willed 3 year old little girl...Enough said! The 3's were not easy with Morgan, nor have they been with Rylee - only 9 more months to go (I'm thinking of making a ticker counting down to her 4th birthday for the blog)...Then, I will have another 3 year old on my hands. HA! Overall, it does seem to be improving and she is quickly learning relearning the boundaries and rules of our home (Some days, I'm convinced that the introduction of Ryan into our home erased her entire memory!). Ryan is doing well. He had his initial visit at the International Adoption Clinic at the University of Kentucky. We do not have the blood work nor the other labs back yet, but overall he is a healthy little and the 15th percentile for weight. An occupational therapy assessment was done while we were there and there were some concerns about his gross motor skills. Personally, Mike and I are not concerned as we have observed the skills that he was asked to do here at home. Ryan was just not into what she was asking him to do as he wanted to be in the room playing with her toys and that paired with the language barrier, he just wasn't very cooperative. We have been referred to the Cincinnati Children's Hospital for his audiological assessment, etc. That is scheduled for January 30th. We are very anxious for that appointment! Ryan is adapting well. He is hugging and bends his forehead forward for kisses. He is picking up a few English words and is signing - night-night (sleep), I love you, potty, finish, help, thank you, eat. I am not using 100% signs with him, just a few key words here and there along with saying the word. He absolutely loves his Matchbox/Hot Wheel cars and is not uncommon to see him playing with them while wearing Rylee's tiara. He has the most expressive little face and is not afraid to tell you off in Chinese - we aren't sure what he is saying or if he is really saying anything at all - but there is no doubt that he is not happy with you! He is the funniest and sweetest little guy and it doesn't take long for him to make you laugh!!

Morgan is still Morgan... Going with the flow, initiating some of the chaos, stepping up to help without being asked, and loving every minute of being the "big brother"!