Long Time No Blog....

It's been forever since my last update. Partially because I'm not sure how to handle the blogging anymore. Since my last post, we had a new addition to our family, Ezra Esprit Johnson was born Jan. 25th 2010. Ezra, like our middle boy, Noah, is hearing. Yes, I know, he is almost a year old already! Time flies! Isaac is in kindergarden, but we have decided to teach him at home. This was not a choice we made because he is Deaf. It is the best decision for our family. It has been challenging, not because of teaching Isaac, but because of incorporating school into our day with an active pre-school aged boy who loves his big brother (aka Noah), and a walking 11 month old who is into everything!
Isaac loves learning and usually is very quick to master new concepts. He continues to amaze me with how well he is doing. If he were to go to traditional kindergarden, he would be mainstreamed with other hearing children and simply have 45 min. of speech therapy a week! Praise God! He loves learning and can read pretty well for a 5 year old. It is so amazing to witness the first sentence that he read! The look on his face will stay with me forever.
Isaac still has the Nucleus Freedom processors. We are entertaining the idea of upgrading him to the N5 processors, but are unsure how much he will benefit and if the out of pocket expense will justify it. He already talks non-stop. Even withouth his processors on, he uses words in his pretend play with his toys. We are going to GBMC on Jan. 7th to discuss this further. Prayers would be appreciated! This past year has been a whirlwind. I would like to combine Isaac and Noah's blogs into one and am unsure how to do this. I don't know if I will just create a new blog and post Johnson family updates or what. We will see. Merry Christmas Everyone!

So much has happened....Isaac on the news...a birthday...

It has been forever since I have been able to post anything online. We have had so much going on, and to top it all off, our computer was out of commission for a month. Isaac turned four!!!! I can't believe my little guy is four years old! We had a super birthday celebration for him at Port Discovery in Baltimore, MD. If you have never been there, it is amazing. It is a huge children's museum. It is three floors of running, jumping, climbing, fun. Plus, the kids can learn so much too. We didn't have a party there, Grandpa, Granny, Auntie Lydia and Uncle Mike, Ian, me and the boys went. It is too much fun to even begin to tell.

In other awesome news...our local news station came to Isaac's pre-school and did a news spot on him and another little boy in his class. I don't know if you can still view the video, but the story is at this link http://www.fox43.com/pages/landing/?blockID=234603&feedID=589#comment_name234603.
It was a "beyond words" experience to get to tell a little about our story and introduce the world to our amazing little guy. We would not have been given this opportunity if we had been patients of another hospital. The whole reason we got this opportunity was because of GBMC. We love them so much! Many of the children in Isaac's pre-school have gone to GBMC for their surgery and mapping, speech therapy etc. We are not just a number there and love the people we work with. They have also given me another opportunity to "share our story" with a room full of speech therapists in our county. GBMC came to conduct a seminar for speech therapists in our area and they asked me to give a parent perspective on cochlear implants! It was so incredible to have these opportunities and I cannot give them enough praise. We are so thankful we chose GBMC!

Although I lost a pregnancy, I have felt so blessed in the past few months. God is doing amazing things in our family and I look forward to the future. I had a complete molar pregnancy and they were able to tell me from the chromosome analysis that it would have been a girl. I knew it in my heart that she was a girl. We gave her the name Abigail which is a Hebrew name and it means, "Joy of the Father." We had been praying for a little girl. Even before we had conceived, she had a name and she still has that name even though she is not living on this earth. She is in heaven right now and I will meet her some day. I look forward to that day. She is complete and whole and will never experience the pain or tears of this world. I look forward to meeting her. As I was driving in my car the other day, I had a thought as I was remembering all the past few months have meant. I was thinking about Abigail and I heard her say, " You weren't ready for me yet mom". I don't know how I thought this, but I realize it is right. God is dealing with my heart in many ways, and I want to be complete and whole in Him before I have a daughter who will look to me for the example of a Godly woman. If I am honest with myself, I know this is true. I believe some day I will have a daughter, if not in this lifetime, I will meet Abigail in heaven and we will embrace knowing that God's will is perfect and that although she was in my life for only a few weeks, she was an answer to prayer.

A sad but necessary update

If you have been following Isaac's blog, right after Christmas I posted that we were expecting a baby in August. Recently, I changed Isaac's blog around and re-posted the Christmas post without that information. I am not going into details because it is too painful right now, but the pregnancy was not viable. I am going in for a D & C on Wednesday. I have not experienced a miscarriage before this, and all I can say is that it is a horrible experience to go through. My heart goes out to anyone who has been in this situation before.

Christmas 2008

After seeing my sister and brother-in-law on Christmas, I was kindly reminded that I haven't updated our blogs in a long time. It is time for an update. We had a wonderful Christmas this year. We spent the morning at our house opening presents from Santa and Papaw and Dee in Kentucky. Isaac even went to the Dollar Store and picked out presents for our whole family with Granny. Isaac got me a back scratcher, Ian a scarf and Noah a toy gun (I think it was more for him than Noah). Both of the boys got so many presents that we need to go through the old ones and get ready for a yard sale this summer!

In the afternoon, we went to Granny and Grandpa's house where we spent the day with Granny, Grandpa, Aunt Lydia and Uncle Mike. We opened presents, played with toys, ate a Christmas meal, sang "Happy Birthday" to Jesus and ate some birthday cake. On Saturday, Great Grandpa Dick and Great Grandma Dory came to visit us from New York. We had a wonderful time with them. They haven't seen the boys since the summertime.

In other news, Isaac is doing well with his 2nd implant. He still does not like to have his "old ear" off and listen with just his "new ear." He doesn't have a lot of word recognition with his new side yet, but I know it will come in time. He is a super smart kid and is doing so well in pre-school. He has a fun loving personality and makes his teachers laugh every day.

Noah is doing well and is talking so much. It is amazing how easily a hearing child picks up the language that we had to work so hard with Isaac to attain. Isaac and Noah really love each other, but they love to pick on each other too. Isaac will set up a train track and Noah will want to play with it and Isaac will get angry because Noah is "messing up the track!"

Isaac has TWO Ears!

Isaac did great yesterday! My friend Lynn watched Noah so Isaac and I could focus better on the experience. I think it would have been sheer torture to have him there with us. Lynn has two boys of her own who are the same age as ours, so I know that Noah had fun. Thank you Lynn!

The "hook-up" the second time around seemed easy for us. Having experienced it before, we didn't have the explanation of the equipment and Isaac seemed so at ease. He didn't even flinch when the audiologist turned the sound on. Isaac has four programs on his new processor that progressively give him more stimulation. The best I can understand this is, when you move from program 1 through 4, more of the nuances of sound are present. I don't think it gets louder, (that's what the volume controls are for)there is just a greater presence of sound. If anyone can explain this better, please let me know!

By the end of the day yesterday we had Isaac using program 4 and volume 6. We were so impressed. I forgot to check the programs this morning and Isaac cried when I put his new processor on. He told me it was too loud. I quickly took the processor off and switched to program 1. Of course, I felt so guilty and sat with Isaac for a while instead of doing my morning chores. Isaac told me he loves me, so it must not have been that bad.

Thank you everyone for your prayers, encouragement and kind words throughout this journey of giving Isaac bi-lateral implants. As a family, we are so blessed to have such a network of love and support from all over the world. I love reading about experiences that others have with cochlear implants. It has meant so much to me. Thank you family and friends!

Left Ear Activation

Isaac's activation is on October 7th. It is not that far away and we are excited. Granny made Isaac a picture of an ear with a blue processor to put on our refrigerator. She then used "post-it" notes and wrote numbers counting down to Isaac's receiving his "new ear". Every day Isaac pulls a "post-it" off the ear and throws it into the garbage can. He is so excited to get his new ear.

A few months ago, a man came into the gym where I work who had a cochlear implant. He looked like he was in his 30's and he had lost his hearing later in life. He had really short hair and a black cochlear implant. I haven't seen him since, but Isaac did get to meet him one time. I don't remember the man's name, but Isaac told me last week that when he gets bigger, he can get a "black ear" just like Jeff. This was after I told him that he was going to get two tan speech processors. Everyday he can decide if wants to wear his blue ears or tan ears. I am amazed that he remembered the man's name and the 5 minute meeting several months ago from someone we have not seen since. This is proof that it is really important for children with CI's to meet adults who are just like them. That being said, Isaac's pre-school teacher and speech therapist told me that there is a CI support group being formed for our area. Young and old CI users and their families will finally be able to get together and share experiences in our little town! This is so exciting for us!

Isaac had his IEP meeting at school last Friday and it went really well! I was brought to tears many times when the professionals working with Isaac told us how wonderfully he is doing. They told me that the concepts he understands and is able to express are above that of his hearing peers! This totally blew me away. Our family tries to teach him everything we possibly can, but I always feel like we are playing "catch up". Amazingly this is not true! Isaac didn't hear for the first 19 months of his life, so he should be 19 months behind his hearing peers. In reality, he is closer to 19 months ahead of them. We need to work on articulation of his words, but his actual vocabluary is closer to that of a 5 year old! I am amazed. I give all credit to God. We as parents are doing the best we can to teach this amazing little guy with the abilities God gave us. God created Isaac and knew that we would be the best family for him.

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well
Psalm 139:14

Even when I was in the deep sadness of mourning the loss of a "perfect child," I knew that somehow Ian and I would be able to handle it. After all, everyone says that God doesn't give us more than we can handle right? I told people that, but secretly doubted it. I no longer mourn the loss of a perfect child because, I have Isaac-my perfect little boy. He is a precious gift from God and he doesn't hear like most people, but he is perfect.

Surgery is Over!!!!!!

First I want to thank everyone for your prayers. Everything yesterday went really well. We all woke up really early. Grandpa, Granny and Auntie Lydia arrived at our house at 5:30 in the morning. Thank you Auntie Lydia for watching Noah! It was a huge relief to know that he was well taken care of. After we went over some last minute details, we left the house for GBMC just before 6:00 AM.

I wasn't sure how traffic would be during "rush hour", but we arrived at the hospital just after 7:00 AM. Grandpa and Granny kept Isaac entertained while Ian and I took care of the admissions paperwork. Granny and Grandpa were pretending they had a bag full of tools and Isaac really enjoyed their make believe game. He was pretending to use a hammer and wrench and saw. He had so much energy it was hard to believe that he would be mellow at all that day. We got our hospital arm bands and took some pictures before Isaac's name was called to prep for surgery.

During the preparations, Isaac put on his hospital gown and socks and thought it was funny when mommy put on her gown, hat and hospital booties. He then found the perfect book, a "Magic School bus" book about plants. He LOVES the Magic School bus series on TV now. It is hard to believe that a three year old would be so interested in the intricate details of how plants work, and the detailed topics that the Magic School bus tackles, but Isaac surprises us every day with what he understands and wants to learn. Daddy read the book to Isaac while Mommy answered some of the questions from the doctors. Finally, it was time to go back to the operating room. This is when Isaac's mood changed a little bit. He hugged and kissed daddy and left to go into the room with me. He didn't want to walk there, so I carried him. Even though they had shown him the air mask and let him try it out he did not like it one bit. I had to hold his head to my chest and make him breathe in the air. He was fighting and whimpering until he fell asleep in my arms. I then placed him on the operating table, said a silent prayer and kissed him as I left the room at 8:20 AM. That was a difficult event to go through as a parent.

Isaac's surgery was done around 12:30 and the audiologist came out and told us everything went really well. She tested the electrodes and said that she got a good response from Isaac's brain. She answered some of our questions and then our doctor came out. He told us that he got full insertion of the electrodes and there was no resistance while putting them in, which was such good news for us. This means that Isaac should get full use of the implant when it is activated.

Ian and I went to get something for lunch and just as we sat down, Grandpa called me and said that Isaac was awake and very upset. He was asking where his mommy was. I took a few quick bites and went down to see him. Granny was holding him, but he was very agitated as he came out of anesthesia. I don't think he was ready to wake up yet, so they gave him more pain medication and he slept for another hour. I held him for a long time and then gave him to Granny while I left to make some phone calls. When I came back, he was awake and drinking some juice in a much happier mood than before. He was alert but not quite himself when we started to leave. Just as we left the recovery room door, Isaac threw up on daddy. He was so upset about this, but we got him cleaned up and changed. Grandpa gave daddy a shirt to change into and we left the hospital. We asked Isaac if he wanted to take a ride in the wheelchair to the car and he became very upset. He told us, "I don't want to ride in wheelchair because my legs not broken!" We ended up carrying him to the car. As we were driving out, Isaac said," I barfed on daddy. I still love you daddy." It was so cute. For the whole ride home, Isaac was sleeping. Occasionally, he would wake up and start talking like he was part of the conversation all along and then fall back asleep.

When we got home, Isaac just wanted to lay around because he couldn't walk very well. His balance was off. We ordered a pizza and he ate a little bit before falling asleep around 8:30 PM. I slept in his bed with him and he wanted his right "ear" turned on all night long. He slept pretty well and woke up around 3:30 AM saying he was hungry and wanted to finish his pizza and drink some juice. Today, we are doing pretty well. I can tell Isaac doesn't feel the best, but he is in amazing spirits considering what he experienced yesterday. He told me he wanted to go to Tumbletown and McDonalds today. I think Tumbletown will have to wait, but if his stomach gets better, McDonalds is an option for later.