So it's been over a year since I posted! I feel TERRIBLE! So much happens in a single week, with progress that is and the super cute moments that kiddos create! So I plan to catch everyone up on the last year over the next couple of weeks! Today I just wanted everyone to know we are still here and that I continue to "blogstalk" many of you and apologise on slacking off here! All 3 kids are amazing and Evan's progress wows me often. He is a normal 3 year old and here are some of the things he is thankful for...
*trucks
*tractors
*cars
*helicopters
*fire trucks
*Rocky (our Yorkie his BFF)
He obviously loves anything that moves or has wheels! He also like dinosaurs! Such a boy! These, especially trucks and cars, he talks about all of the time. We can be working on language about ANYTHING and somehow he does better if we incorporate a car somehow. The pumpkin goes into the truck for example, we can't simply talk about the pumpkin.
We currently have speech every week with Wendi, his private SLP. He does wonderful for her! Every other week he sees his SLP through our AEA for about 1/2 hr. He is progressing with her. I think he finally feels comfortable and we have slipped into a nice routine with her. He continues to see his TOD every week. She has worked with him since he was only 3months old and she has become part of the family.
This is a super fast update but look for recaps of our last year! WE went to South Dakota, Disney World, the ZOO, Children's museum....there is so much to share I can't wait to finally do it! We are BACK!
Wednesday, November 30, 2011
Monday, August 30, 2010
Genetics!
So after nearly two years, we know why Evan was born Deaf. We had our gentic testing done some time ago, with no findings to our knowledge. After a recent call to our coordinator and a suprise call from Evan's surgeon, we do have results!
Evan's deafness is genetic! It's a recessive form of deafness of the gene GJB2 better known as Connexin 26. This means that Rich and I BOTH carry the same mutaion, so this mutaion has been carried through each of our families undetected for years! It's rare to have two spouses with the exact same GJB2 genetic mutation, but when they do it's the most common cause of nonsystromic hearing loss. Luckily there are no other issues that go along with this! He is simply Deaf and we have done all the right things for him. This has validated all the nights I have cired, worried, researched various syndromes and other causes of Deafness. Wondering if we were missing something with him, fearful that it might be to late when we figured it out. There are a mutitude of health issue that can go along with Deafness in syndromes that can sometimes go undected. I am so thankful that we are blessed wtih this simple uniqueness! He is Deaf, a healthy little boy that simply hears differently than the rest of us. And yes he does hear! He hears wonderfully and speaks, more clearly each day. So thank you Connexin 26 for being no more than you are and thank you to Dr. Hanson for taking the time to call me personally with this information!
So, now we also know that the girls are potential carriers of the mutation. For Rich and I we have a 25% change of having a Deaf child, a 50% chance of having a hearing child that also carries the mutation, and a 25% chance of having a hearing child that is Not a carrier. So as potential carriers they would also have to have their spouse carry the exact gene mutaion to have a Deaf child. So the likelihood that we will see this again in our family is slim, but not unheard of obviously. So I am thankful to know the stats and be educated. So if we do see the mutaion passed on, we know exactly what to do!
Thank you to science for explaining so many things in this world. And thank you to our Lord who created such mind boggling mysteries for us to figure out.
Evan's deafness is genetic! It's a recessive form of deafness of the gene GJB2 better known as Connexin 26. This means that Rich and I BOTH carry the same mutaion, so this mutaion has been carried through each of our families undetected for years! It's rare to have two spouses with the exact same GJB2 genetic mutation, but when they do it's the most common cause of nonsystromic hearing loss. Luckily there are no other issues that go along with this! He is simply Deaf and we have done all the right things for him. This has validated all the nights I have cired, worried, researched various syndromes and other causes of Deafness. Wondering if we were missing something with him, fearful that it might be to late when we figured it out. There are a mutitude of health issue that can go along with Deafness in syndromes that can sometimes go undected. I am so thankful that we are blessed wtih this simple uniqueness! He is Deaf, a healthy little boy that simply hears differently than the rest of us. And yes he does hear! He hears wonderfully and speaks, more clearly each day. So thank you Connexin 26 for being no more than you are and thank you to Dr. Hanson for taking the time to call me personally with this information!
So, now we also know that the girls are potential carriers of the mutation. For Rich and I we have a 25% change of having a Deaf child, a 50% chance of having a hearing child that also carries the mutation, and a 25% chance of having a hearing child that is Not a carrier. So as potential carriers they would also have to have their spouse carry the exact gene mutaion to have a Deaf child. So the likelihood that we will see this again in our family is slim, but not unheard of obviously. So I am thankful to know the stats and be educated. So if we do see the mutaion passed on, we know exactly what to do!
Thank you to science for explaining so many things in this world. And thank you to our Lord who created such mind boggling mysteries for us to figure out.
Monday, August 2, 2010
More speech!
So summer is soon to come to a close and school will be in full swing. Well a couple more weeks, but I am getting plans set up ahead of time. I am working again to push for speech, speech, speech, for Evan! The twice a week that is recommended has never happened :( I was able to get twice a month and the way the summer has gone, unfortunately has ended up only once a month! I am very worried as know I am doing great things with him at home! I am just disappointed that he isn't getting what I think he really needs. So I am seeking out more private speech services. He is currently on a waiting list to get into a regular time slot with an SLP only 30 mins. from us. That will be a weekly service and the SLP seems to be very good with Evan and I think he will do well for her! I have also put his name into the I Hear program in St. Louis! Although we have been playing phone tag, I am excited to visit with the head of the program and get the ball rolling for that! I have heard it is a great program! I really wish there was someone with AV training in our area and bummed that really not many SLP's really get it. We aren't strictly AV, we do use sign as support. Thank goodness or it would have been a real struggle this summer at the pool! So we have a lot to learn, the girls will be back in school learning, and Evan will continue to learn to listen an to speak along with many other wonderful things his sisters will teach him! Those 3 keep me on my toes and I love every minute! I just hope I am doing everything they need me to do!
Saturday, June 26, 2010
Summer Fun!
So, summer is officially here and we are having a blast! Evan has been going EVERYWHERE with his big sisters so far this summer. He has enjoyed watching t-ball 3 times a week, plus practices! He already has the concept down...the ball goes on the t...then you hit it off with the bat...then you to it again and again and again...
The pool is a lot of fun too! He has really been loving the water! Bath time is not always his favorite at home, so I was a little worried about the summer full of pool time. He has surprised me and loves to play, maybe a little too much! He thinks it is funny to walk right off the edge into my arms, put his face in the water, and follow his sisters as much as possible. The zero entry is perfect for his age, but he doesn't always like to stay in the shallow area, not where the girls like to hang out either, so the lazy river seems to be where the fun is, although, I have to say the little frog slide is pretty cool too! It's so hard to have 1 favorite! My only gripe is the great amount of silence the summer brings too. Pool time means silence for him, and I don't like that part as much :( I of course sign when I need to ask him things, or tell him about the toys, what we are doing, etc. I still talk to him like I do when he has his "ears" on, but I hate that he can't hear all the amazing sounds there are to hear at the pool! The dinging of the bell right before the bucket of water dumps, the music, laughing, rushing of water... I tried to leave them on in the little sprinkler area, but of course the face has to go into the spray right away and I can't risk the loss of them! So, we have silence for awhile. I know he is doing amazing and soon there will be upgrades to waterproof processors, or at least that is the plan I have in my dreams. It really can't be that far off with the progress CI processors have made in the very recent past.
Weddings, sun, friends, swimming, adventure, fun! That is our summer! The most recent wedding, just yesterday, brought with it a new sign! HORSE! We talk about animals all the time, but cars or anything with wheels is so much better than animals to Evan. So there were horses at the reception and he signed it! YEA! A new word for the day! He seems to be picking up a few new words, signed and or spoken each week! New sounds all the time! Another cute moment at the reception...it was outdoors on a farm, beautiful. Luckily I packed the rain boots, as it rained...a lot at the beginning of the evening :( MUDDY! Tornado warnings to, but that is another story :) He was marching around in the mud, we visited the horses, talked about the flowers, had to smell them of course, peek-a-boo around the port-a-potties (who wouldn't love to hang around them!), and my favorite were his repeated attempts to blow out the tiki torches like candles. We have had to work hard on the blowing business and there it was! I must need to light more candles around here for him to blow out, or just get some tiki torches!
I can't wait for more summer fun!
The pool is a lot of fun too! He has really been loving the water! Bath time is not always his favorite at home, so I was a little worried about the summer full of pool time. He has surprised me and loves to play, maybe a little too much! He thinks it is funny to walk right off the edge into my arms, put his face in the water, and follow his sisters as much as possible. The zero entry is perfect for his age, but he doesn't always like to stay in the shallow area, not where the girls like to hang out either, so the lazy river seems to be where the fun is, although, I have to say the little frog slide is pretty cool too! It's so hard to have 1 favorite! My only gripe is the great amount of silence the summer brings too. Pool time means silence for him, and I don't like that part as much :( I of course sign when I need to ask him things, or tell him about the toys, what we are doing, etc. I still talk to him like I do when he has his "ears" on, but I hate that he can't hear all the amazing sounds there are to hear at the pool! The dinging of the bell right before the bucket of water dumps, the music, laughing, rushing of water... I tried to leave them on in the little sprinkler area, but of course the face has to go into the spray right away and I can't risk the loss of them! So, we have silence for awhile. I know he is doing amazing and soon there will be upgrades to waterproof processors, or at least that is the plan I have in my dreams. It really can't be that far off with the progress CI processors have made in the very recent past.
Weddings, sun, friends, swimming, adventure, fun! That is our summer! The most recent wedding, just yesterday, brought with it a new sign! HORSE! We talk about animals all the time, but cars or anything with wheels is so much better than animals to Evan. So there were horses at the reception and he signed it! YEA! A new word for the day! He seems to be picking up a few new words, signed and or spoken each week! New sounds all the time! Another cute moment at the reception...it was outdoors on a farm, beautiful. Luckily I packed the rain boots, as it rained...a lot at the beginning of the evening :( MUDDY! Tornado warnings to, but that is another story :) He was marching around in the mud, we visited the horses, talked about the flowers, had to smell them of course, peek-a-boo around the port-a-potties (who wouldn't love to hang around them!), and my favorite were his repeated attempts to blow out the tiki torches like candles. We have had to work hard on the blowing business and there it was! I must need to light more candles around here for him to blow out, or just get some tiki torches!
I can't wait for more summer fun!
Sunday, April 18, 2010
Dance Fever!
We went to a wedding last night and had a really good time. All the cousins were there so the kids really enjoyed being together! We stayed at a local hotel that the reception was held at so the kids could swim and play together and also so mommy and daddy didn't have to worry about driving home :) So like all other wedding dances the music was super loud and I watched Evan really close to be sure it wasn't too much. He actually really loved the music! I took him on the dance floor for awhile and watched in awe as my deaf son danced to the music! It was just another moment of clarity for me that we have made the right choice for him and that he won't miss out on anything! He actually couldn't get enough, because when his sisters were crying, yes crying to go to bed, he wanted back out on the dance floor! We also had the opportunity to answer many questions people had about him and his "ears." I welcome any chance to share the amazing technology of CI's! Alanya also had a very exciting moment...a man from our community was there who also has a CI. I have not had the chance to meet him personally, but knew of him. Alayna seriously drug me over to show me his super ear. She was so happy and thrilled to find someone else with super ears like Evan. So we introduced ourselves and I'm glad Alayna was as excited about his super ears I was! So Evan did have a case of dance fever and I can't wait to see what moves he comes up with as his hearing progresses!
Monday, April 12, 2010
Language explosion!
So I am obviously not very good about updating Evan's blog, but I am however very good at following many other blogs! So for those of you who like to follow us, I am working on improving! Over the last couple of weeks Evan has really begun to makes a variety of new sounds! His Bye Bye is perfect and Mama is sounding really great! Occasionally it comes out more like Mamba and we are focusing on it, but I think Mamba is rather cute! I answer to it, so it works! He vocalizes very well and other words are emerging I just know it! His Uh-oh has finally started to take on a very adorable "O" face, this has been like pulling teeth, but WOW it's finally here! So o-o-o-o is a great sound to finally hear! Not only his verbal communication, but sign as well. Receptively it amazes me how much he understands, but finally he is signing more too. Last Thurs. alone he has 3 new expressive signs...Daddy, Bug, and ball! He also signs more, milk, all done, and dog pretty consistently. I don't sign as much and I know I could, but am ok knowing he is taking in EVERYTHING! He is always listening and watching! Eventually we will be primarily verbal with him, but I want him to have some basics signs for the pool and silent moments. I am just so thankful that he is able to listen and to speak, how amazing is that!
Thursday, February 25, 2010
I love to blog hop and have learned so much from other CI mommas out there without them ever knowing it! There are so many great parent advocates and wonderful ideas on the web that take guess work out of activities for CI kiddos. I know I have learned a lot in Evan's 18 months of life and have a lot to learn yet! Here is my most recent find and can't wait to really spend some time digging through it. I hope you all enjoy it as much as I have already!
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