Saving Our Pennies & Nickels & Dimes...

"Save your pennies!" Those were the exact words from one of the office staff at the doctor's office in California we have been consulting with regarding Ryan's surgeries to repair the microtia (outer ear). We hadn't had any contact with them since our initial contact a year ago when we sent Ryan's medical records and pictures. Since then, we had done some very preliminary scans of our health insurance policy and felt as if we had found the loophole that addressed "congenital birth defects". Since they have recommended that Ryan be 6 years old when they begin the surgeries, it is really too soon for them to answer our "out of the pocket" costs questions as so much can change with insurance policies - And now, good ole' O**m*'s health care plan might mix it all up further. It appears that it is going to be best for us to begin the surgeries in January of 2012 due to meeting deductibles and such. There will be 5 surgeries in all just for the outer ears and all will be done in CA. Anesthesiologists, medical center, etc are "In Network" while the doctors are "Out of Network"... UGH!! I am so confused and still have no real answers except this is going to be a long road with no real answers until we are ready to dive in. So, I guess we will take their advice and start saving our pennies. We are going to have to get creative!!

What a journey...

Some then and now photos....

Ryan has been a part of our family for 2 years today. It is amazing the journey God has taken us on and we can not imagine life without our lil' fella! I know that we have said this a lot, but we can't say it enough...Ryan has brought that little spark of energy and that contagious laughter to our family! I have been involved in a bible study on Wednesday nights at our church for the last 8 weeks or so. I felt like I was being so redundant when answering the questions in the workbook as many of them brought me back somehow to a response that involved our adoption of Ryan. But, you know what... I can honestly say that God revealed Himself to me in more ways than I could have ever have imagined through the adoption of Ryan. Only one other time can I say that I have learned as much about God as I have through Ryan's adoption. That involved our journey from Texas to Kentucky. What I do need to note is that neither of these journeys were simple or expected. They were not without conflict and struggle. But, I can say that God knows us and will do whatever it takes to get us where He wants us. I am in awe of how God can take one situation or circumstance to teach us so many valuable lessons! We have seen God move mountains to bring our family together and today is another reminder of how blessed we are to have Ryan in our lives. Eleven years ago, we were unsure if we would ever have children and look at us now. God has blessed us threefold!

Hittin' the Highway

Things were finally beginning to calm down around here... Yes, the word "were" is inserted in the previous sentence. As of today, Ryan and I have started hittin' the highway twice a month for additional speech therapy. He continues to make progress in his speech and we are quite pleased with how well he is doing. However, we feel like he could be making even bigger strides given proper intervention. Still being in the prime years for language development, we want to provide all the opportunities available to us to increase his skills and to prepare him for the years ahead. Thankfully, our insurance provides coverage for a number of speech therapy/aural rehabilitiation sessions. Since this is Ryan's last year before kindergarten, we believe that it is important that we be as proactive as we can be - Looking back, we probably should have done this sooner. We are thrilled because I will be involved in the therapy sessions and can carry through with what was taught by the therapist at home. Whether or not he will need this level of therapy in the years to follow, we have no idea. What we do know is thatsometimes it is tough being the parent of a child with "special needs" - These are the times when I come to realize that Ryan is a child with special needs - These moments don't hit often, by the way. We want all the services that are available to him, but have little control of what happens through the school. Yes, we can push for goals and document them in the stack of paperwork. But, knowing how, when, and if they are being taught, implemented, or practiced is a whole other issue. I have never expected the school system to be fully responsible for educating my child. I believe that it is my job as the parent to partner with the school to teach the skills necessary for my child to succeed in school. Ryan is a perfect example. Knowing his classroom learning goals that were set back in May, he and I have worked on those skills alongside the teacher and he has already mastered them and a new IEP is about to written to set new goals. Okay, it is time I get off my soap box - If you happen to see us cruising the highway, be sure to give us a honk and wave!

Round and Round and Round

Yesterday, we headed up to Cincinnati Children's for the aural rehabilitation evaluation. Ryan has been progressing so well in his speech and language and things have been going along very smoothly since he received his BAHA. I really thought everything had been mapped out as to what decisions we needed to make, felt like we knew the timeline we were looking at for surgeries, all of our therapies were in place, etc. Even though we have still yet to make any decisions, we knew and understood the options available and felt as if we were in a holding pattern until decisions were made and he met the age requirements. According to the tests administered yesterday, he is doing well and his language is on target with his "typical" developing peers. However, The therapist did recommend that he receive 6 months to a year of aural rehabilitation. Yesterday, I was also told for the second time (two different audiologists) that he would benefit from a second BAHA - making it one for both sides. I do not know if this something that the main audiologist is going to start pushing for or not. It has just been brought up twice since June. I won't even go into the problems we went through to get BAHA #1 - I will , however, be shocked if insurance will support BAHA #2. Once Ryan returns to school next week, I will begin a new "To Do" list trying to figure out who can provide the aural rehabilitation services (school, private therapist, etc) , calls to the insurance company, yada yada yada. Although he behaves and functions like any other 4 year old, I know that I have a special needs child and that all of this is part of raising a child with a special needs. Like most moms I want to do everything that I can to get his needs met when it comes to getting him the services necessary to help build a strong foundation for learning and life. Because he is doing so well and is such a sharp lil' guy, I must admit that most days I do forget that he is classified as "special needs". I think that this is probably a good thing most of the time as he is treated the same and we have high yet, achievable/reasonable expectations for him just as we do for Morgan and Rylee. Yes, we do make some adaptations when it comes to language and hearing, but all-in-all he rolls right alongside us and has absolutely no problems doing so.
So, back onto the merry-go-round we go... (Insert carousel music here)

Fabulous & Finally Four!

It has been a long week waiting for the "BIG" day! Ryan has been so excited about his birthday. He absolutely loves birthdays. They can be anyone's birthday, he is one that loves cake and ice cream. It was an exhausting day, but a great one as we spent it together as a family! We started off the morning with a hike to the Pinnacles. We hiked for approximately 2 1/2 hours. Let's say that it was a tough hike on us all and it was quite humid - ugh. While hiking, Rylee was concerned about bears while Ryan was asking if he would see a walrus. I wish that we could say that we saw both, but sadly we did not! We saw lots of other neat things, however. We just took our time to observe the nature around us (what a great excuse to catch our breath and rest our aching bodies). We found a centipede, watched butterflies, found a bright green fly looking bug, and observed a tiny ant carry off a huge dry pea snack that one of the kids dropped. Mike found a nut shell and convinced the kids that it was a pig's nose. He then proceeded to tell them that the pig took it off so that he could go play with his friends just like Ryan takes his BAHA off when he is playing rough. Mike told them that they should leave it where they found it so that the pig would be able to find it. Yes, the Costanzas are gullible. So, on the way down the mountain we were on the lookout for the pig. Umm... We didn't see him either. After our hike, we headed straight to the movie theater to see "UP". From there, Ryan's dinner request was Faz*l*'s. He filled up on his fettuccine alfredo and bread sticks and then was more than ready to head home as he knew there were presents and cake waiting there for him. So, the partying continued. A little turtle cake, ice cream, and presents!! Ryan had no hesitation blowing out the candles and I am sure his wish will come true. Now for a few pictures ....

New Friends

As much as technology can sometimes consume our lives and annoy us, I must say that it has been an awesome way to meet other people that we might not have met otherwise. Last night, we had a wonderful family over from our area for dinner. They adopted a child with the same condition as Ryan approximately 6 months after we adopted Ryan and Silas is a year younger than Ryan. And actually, he was on the agency's waiting child list after Ryan - Morgan and I fell in love with his precious little face. Both our families see the same doctors in Cincinnati and both boys have BAHAs. How great for Ryan to have a buddy that looks like him and wears a BAHA too. It was wonderful to fellowship with another family that is experiencing many of the same issues and dilemmas that we are. Rylee had a blast with their two daughters and is right between their two girls age wise. We had a blast and look forward to getting together again! Thanks for coming G***h family!!

Note: Not sure what happened. My pictures did not come out well at all! My settings must have moved - I really, really hate when that happens!!

Clarification

I had never heard of aural rehabilitation prior to our appointment last December. I think the proper term is "habilitation" as it is teaching the child to use the hearing he/she has rather than reteaching the child to use the hearing he/she has. Aural habilitation teaches the child to maximize and use the residual hearing to it's full capacity. It focuses upon sound detection, descrimination (similarities and differences between speech sounds), auditory comprehension. That is a very brief summary and I look forward to seeing if this additional therapy will be beneficial for Ryan!

Progress Has Been Made!!

Today was Ryan's visit to Cincinnati Children's Hospital for a hearing evaluation and to visit with the otolaryngologist. I dare you to say that 5 times!! The audiologist was floored as he talked up a storm and was telling her these elaborate stories. If you had asked me how he did during the testing, I would tell you that he was not responding very well as he was a bit off task. If you asked the audiologist, she would tell you he did great! I guess by changing around the tasks and the ways to respond she was able to acquire the information necessary to do a thorough evaluation. It is so amazing to think back 15 months ago when he had just gotten his BAHA and how he would not respond at all to the sound or her. His hearing is consistent with the tests in the past and they still believe that the BAHA is providing him without enough hearing to see progress in his speech and language development. So, we will continue on. We are now in a new phase and will have him evaluated for aural rehabilitation/therapy. This will be done at Cincinnati Children's hopefully before school starts and if they decide that he would benefit from therapy then we hope to get a referral for that closer to home. After our audiology screening, we went to see the otolaryngologist - dare you to say it another 5 times!! He was pleased with the progress and we discussed our options again. We have several options at this point and although no surgeries can be performed until he is 5 or older, we feel like we need to begin down that path of researching thoroughly our options (or I should say the options that will be best for Ryan), evaluating the pros and cons of each option, etc. We have no clear direction at this point and initally both Mike and I are on different pages. We will continue to do our homework and begin praying diligently for God's direction. This is such a tough decision, but we know that God will make it clear (in HIS time) what is best for Ryan! Oh, forgot to mention the purpose of the title of this post - Ryan actually let the doctor's assistant (who was wearing the dreaded white coat) look at his ears! You have no idea what a huge step this was and he was so proud of himself!! He doesn't know yet that he is going to see his pediatrician tomorrow for a "well child" visit. I pray that he does just as well. I think if I convince him that no shots are involved, he will be fine with it! Well, that was today's visit in a nutshell...

ARC - IEP

Whew! Luckily, I am somewhat familiar with all of these acronyms. Today, we had our ARC (Admissions and Release Committee) meeting to discuss Ryan's IEP (Individual Education Plan/Program). We are very blessed that Ryan has such a wonderful team of people working with him on his goals. He has made such great strides this year and we can't imagine what he will have mastered by this time next year. He will continue with speech therapy and deaf education services next year. He will also remain in the preschool program with the same teacher and quite a few of his current school friends. In late winter, the school system ordered him an FM system for his BAHA. Basically, it is a little piece that connects onto his BAHA and the teacher wears a little microphone clipped to her shirt and the receiver which is the size of a cell phone attaches to her waist. The sound is then sent directly to his BAHA. This significantly decreases the background noise within the classroom and has been very effective. The teacher is amazed that she can whisper into it and he immediately scans the room for eye contact with her. He will continue to use that as an adaptive device. Our biggest goal this coming year is to work on his speech as well as his ability to respond to questions (both yes/no and the"wh" questions). We discovered recently that he may not always understand what we are asking and that he relies heavily on our cues - the cues that we did not realize we were giving. So, we frequently have to turn off the expressions and ask questions with a "stone" face to assess his understanding of what we are asking or saying. After recognizing this, we have observed him and he is taking in everything before responding...our expressions, tone, body language. Visual phonics will also be integrated across the board to help with his speech. This past winter, his preschool teacher and I went to a workshop that was facilitated by the deaf education teacher and it is amazing how quickly he was drawn to this method. So, next year the speech therapist will be on board and we will be able to use it consistently with him when he is having difficulties with a particular sound, word, or blend. Academically, he is developing in leaps and bounds - the teacher will teach him something once and he takes off with it. Rarely does she need to go back and reteach. He is a very observant, sharp little guy! We are thankful that everyone was very open to hearing us out and taking into consideration our goals and expectations for him. I wasn't quite sure what to expect from the meeting. Although it has been many years, I have always been on the other side of the table - assessing, teaching, and writing goals. It is quite different being on the other side - the one advocating for your child and the one that knows your child and his abilities better than anyone else.

Too funny!

It doesn't take much for this little boy to make me laugh!

I received this picture yesterday from another mom that recently adopted a little girl from Ryan's orphanage in Ch*n*. I think the staff must have taken the picture on her roll of film so that it would be passed along to us as the staff knew that we had connected. The timing of it is pretty funny based upon yesterday's post and the fact that they used our orphanage donation to create/redesign/furnish (not exactly sure what was done) the "Medical, Rehabilitation, and Psychological Consulting Room". As part of the adoption expenses for Ch**a, families are required to donate a large sum of money to the orphanages where the children are adopted. It basically helps with the expenses for raising the children during the time they were there. You typically pay the fee (in crisp, uncirculated cash), but have no idea how it was used. You have to obey and trust and just hope that it is used for it's intended purpose. After we are finished with doing what we have been called to do, it is totally out of our hands and up to the receiver to do what he/she is called to do. Hmm...seeing any parallels there? I am realizing the parallels as I write...When God calls us to do something, we must trust and obey and leave the rest up to Him! Sometimes, we will see the fruits of our obedience and often times we will not. We were so thrilled to see how our gift was used at Ryan's orphanage.

Note: The last name has been blurred for internet purposes.

Ryan's Wishes Quilt

Mom just finished Ryan's 100 Wishes Quilt and gave it to him this past weekend - We came no where close to 100 wishes this time around, but it is wonderful and so very meaningful to us all. I know it doesn't mean a whole lot to Ryan right now, but in time I know he will treasure it! A big thank you to everyone who participated in the project and for all of your wonderful prayers, sayings, and blessings! Thanks again, Mom!!

The Costanzas

Move over...Jon & Kate Plus 8....The "Circus" is coming to a network near you! I am telling you...We only have 2 little ones, but boy can they come up with some doozies...Here are a few pictures of their latest game...















What are they doing you ask? Ummm... Playing doggie - Ryan is Scooter. Oh, and look at the leash..Wait! That's not a leash - That is Ryan's BAHA (hearing device)! Yes, his brand new $4,000+ BAHA that we spent months negotiating with our insurance company over. It fell off and the clip is still attached to his shirt so that it won't break if it falls off. Hmmm...Hey, why not play dog with it! OH MY GOODNESS!! Let's just say, we had a nice little "discussion" this evening!