Aidan is in quite the mood lately. And not a good one. He had a checkup yesterday b/c I wanted to get his ears checked before Christmas. His ear infections are gone, thanfully. So that means his moodiness must be teeth. I don't blame him, they hurt. On the hearing front, he is doing pretty good. I don't know what he is hearing, but he definitely hears us. Occasionally he will turn when I say his name. I don't think he knows his name yet, he is just hearing me say it! I have noticed he turns a lot when I say words that start with A, maybe b/c I say his name a lot :) Today he was a bear and kept pulling off his processor. So I took it off and let him have a break. What do you know, he seemed to be even more irritable with it off. I put it on 1 hour later and he calmed down. So I think he is starting to recognize that sound is GOOD.
We had Christy(ST) and Margaret here today working with Aidan. Margaret works with all the deaf kids in the local parishes, so hearing loss is what she knows. She gave Christy and I both some good ideas on what to do with Aidan. We are putting him in the highchair with 1 person in front of him to sign/talk/play with him and the 2nd person sits behind him and introduces sounds(from speech and toys) to see if he will turn to it. He turned to the sound quite a bit so he is hearing. But there were times he didn't turn and that was mainly when he was too engaged with something else. So we need to work on getting him to ackowledge sounds while being occupied.
We do notice him responding to some stimulus in the everyday world, but the environment needs to be pretty quiet and the stimulus needs to be loud. We are of course running into the problem of having 3 children in the house. Alex is always running back and forth, yelling, talking, whatever. Andrew is either being held, fed, rocked to sleep, or crying. So it is a very busy environment for Aidan to learn in, and that is a problem. Don't think it can be remedied, short of sending the kids to live somewhere else, which won't be happening. So, I do think it will take a bit longer for Aidan to learn, but maybe by the time he is 2 he will be old enough to realize that the implant helps him and won't take it off as much. Only time will tell.
Finally He passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one God? She’s so happy.”
“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”
“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect –she has just enough selfishness.” The angel gasps – “selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word”. Nor, will she consider a “step” ordinary. When her child says “Momma” for the first time, she will be present at a miracle, and will know it!”
“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute every day of her life, because she is doing My work as surely as if she is here by My side.”
“And what about her Patron saint?” asks the angle, his pen poised in mid-air.
Aidan's new therapist stated today, she is great. She gave me some great tips to help Aidan localize sounds and we noticed today that he is reacting to sound! He blinks when there is a loud sound, so it is like he is startling, but not like a newborn startles. This is great news!
I went through the kids toyboxes to find the toys that make the most sound, zylophone, piano toy, rattles, hammer, and put them in a special place just for Aidan. We will be working as much as possible every day with him to help him localize sounds.
So I took Aidan with me to do the grocery shopping today. It was his first day to wear his implant in public. It felt so weird for everyone to be staring at him. Would have been much better had they just asked me what the heck that contraption on his ear was instead of walking with their head craned backwards. He did very well keeping it on though, the store is a nice distraction for him.
While checking out at the store I ran into a girl I went to high school with. I can't remember her name, heck not even sure I ever knew it. Anyway, she is also deaf and has a newborn daughter. I talked to her a few minutes-how neat that she can read lips and talk good enough for me to have a conversation with her. It was nice to see that even though she is deaf she still has a life. Something I worried about with Aidan-whether or not he would go on to have a family, go to college, all the typical adult things. Too bad I didn't think to get her email so we could continue talking, but I am sure I will see her again eventually.
Aidan is becoming much more accustomed to his implant processor as the days go by. Still not wearing it for long periods of time but we can get him to wear it for upwards of 20-30 mins before he starts really fighting us on putting it on. We even got an hour out of him yesterday and that was with him only pulling it off 2-3 times. We have come to the conclusion that if we take him outside and carry him around the yard, or pull him in the wagon, that he will leave it alone. We have bumped him up to the 2nd level and are on the 3rd volume of that level. No visible response to sound yet, but I think he does hear some b/c of the look on his face when I turn it on. Not sure how high of volume he may hear, but I think it is some.
We had Aidan's activation today. Went pretty well. He does not like his equipment that goes on his head and pulls it over every minute or so. The audiologist put in 4 different levels for now. There are a total of 50 levels she will program into it over time. Each level has 9 levels of volume in it. So right now he is own the first level with volume at 6. Over the next few days we gradually go up to 9 and when we have been there for a while we go to the 2nd level and go through the 9 degrees of volume, then to the 3rd level, eventually getting to the 4th level with a volume of 9. After we reach that(within 3 weeks) we go back to the audiologist and she adds 4 more levels for us to work through. Eventually we will get through all 50 levels---each level gives him more and more hearing--I believe it is set at diffrent decibles and increases as we go up, but I am not 100% sure.
So right now he is hearing at the lowest frequency, meaning he really can't hear us right now. Mostly he is getting used to wearing the processer on his ear and stimulating his brain/ear to accept the new sounds. He is hearing something though as he cried as soon as the audiologist turned it on. He pouts/whines everytime I put it back on his head and turn it on. Hopefully he will stop pulling it off and get used to it soon. All in all, very encouraging.
Aidan playing on his new firetruck from Mimi:
What his implant actually looks like-a rare moment with him keeping it on:
I finally was able to get the audiologist from Oschners Hospital on the phone today. We are now set up for an appointment on September 15th, so 10 days away. I am really looking forward to this day but I am also dreading it. This is the day we will find out if this is going to be successful for him-so it will either be a really happy day or a really really sad day. Overall, it will be an emotional day for all of us.
I did get his Dr's bill in today. In total, he has run up a bill of $55,000. That doesn't include the next several months of adjusting the implant to get it working right, the several years of therapy he will have, or the several years of Dr's appts that are sure to follow. Thank God for Medicaid or we would be screwed and he probably would never of had this opportunity at gaining some hearing abilities.
SO it looks like Gustav will be hitting Monday and Tuesday and it is headed towards New Orleans. We were supposed to be headed down to New Orleans on Tuesday to get Aidan's implant activated. It doesn't look like we will be going, but we will find out for sure Monday night/Tuesday morning. It really sucks, I was really looking forward to this day and don't want to postpone it. I am hoping if we do have to cancel it that we can get in later that week or early the next week. Our luck we won't be able to get in for another several weeks, then I'll be really pissed.
Aidan has finally started signing some. He signs eat, ball, cold(though I don't think he understands this one), and baby(not sure if he gets this one of not). It is great to see him finally connecting things together.
Aidan is now also getting tooth number 2 and 3 in. Although he is also grinding them together which I hate the sound of. Hopefully he stops doing that very soon.
Aidan is finally walking while holding onto my hand, but when I let go he will not go any more. He is still very unsure of it but I expect him to be walking by 15 mths. That gives him a month and a half to get a little more confidence.
He is also stacking blocks(and putting them back in the bucket). I love seeing him connect everything together and try to copy me. He also will pick up toys occasionally and throw them in the toy bucket, although he usually prefers to throw them out of the bucket :)
We welcomed our 3rd baby boy into the family on August 18, 2008. Andrew John David was born at 8:09am weighing 8lbs 9oz and 21" long. He has a head full of brown hair and looks like his mama :) Not at all like the other 2 boys. Alex does ok with him, he could really care less lol. Aidan is a bit jealous and not quite sure what to make of him. I think it will get better in about a year when Andrew is mobile and can play.
We have scheduled Aidan's implant activation day for September 3, 2008. I cannot wait for it. Originally we didn't think I was going to be able to go with Edward, since I will be having a csection on August 18, but I think I will be healed enough to go. Even if I am not, I think I will push myself anyway. I may be in a lot of pain, but I don't want to miss that moment for anything. We haven't told family yet when the day is and might not if we don't have to. I can see everyone calling us all day that day to find out the news and if it doesn't work, it will be pretty hard on us. Some of our family don't seem to understand that this isn't 100% foolproof, it may not work at all. So everyone please pray that it works for him and he can finally hear on that day.
Aidan has been learning a lot of new things lately. He finally figured out how to drop the balls into his ball toy, he also picks up toys and puts them back in the toy bucket :) Of course he still enjoys throwing them out more. He has finally gotten his first tooth at 12.5 mths old, YAY! Now if only he would get some more. Edward is taking him down to New Orleans tommorow for a checkup. Kind of sucks b/c he will have to drive there tommorow night after working 6 hours, it is a 6 hr drive, so they won't get there until 11pm at the earliest. The appt is at 1:15pm and will most likely only take 20 mins tops--I believe they just want to make sure the incision is healing like it is supposed to, which it looks great to me, I'll try to get a picture when he wakes up.
Alex and I made cookies today, thay boy is loving to cook. He doesn't like to eat though, weird little boy. Aidan ate his cookie and enjoyed every minute of it. A few pictures to document his first chocolate chip cookie.
Aidan finally managed to pull the steristrips off of his incision today. So I got my first real look at what it looks like under there. Not as bad as I expected, but it does go up a little higher than I thought it would. Still a little swollen and it is bruised around the area. I think it is itching him just a bit as he keeps scratching at it.
Here are a few pictures of what it currently looks like:
Aidan did pretty good for his surgery. He didn't come out of anesthesia happy at all, in fact, he cried for the first 5-6 hours off and on while trying to sleep. He is happy now and doesn't seem in too much pain. The incision isn't as big as I expected but it is a lot more swollen than I thought it would be. We have to go back for a checkup in 2 weeks I guess to make sure his body doesn't reject the implant. Then we will go back sometime in August, maybe beginning of September. I am going to add some pictures from the surgery so feel free to skip the last few that show the incision if you don't think you can handle a little blood.
In his hospital gown
Edward and Aidan sleeping after the surgery
Aidan is finally in a happy mood, but hates the bandage
Picture of the incision site, still covered with steristrips and will be until the fall off
You can kind of see how swollen that side of his head is
I finally got around to making Aidan's video of his first year. It seems like it was just yesterday when I took these pictures. Time with a baby goes by way too fast, we all need to remember to slow down and enjoy this time, we will never get it back.
The time for Aidan's surgery is fast approaching(6 more days)and I am getting so nervous. It is so hard to watch them take your baby while you have to sit in a waiting room and pray that everything goes okay. And then to see them lying helpless in the hospital crib is even worse. I was so sick to my stomach last time and that was just for a cat scan. We will be going down on Sunday after Edward gets off work at 2pm and will hopefully be on our way back home by Tuesday afternoon. I will try and update everyone as I can but that all depends on if we have internet service there. Otherwise I will get my sister to update everyone.
I can't believe he is one already, time has gone by so fast. 12 mth stats:20 lbs 2 oz29.5" He can sign eat, understands milk, mommy, daddy, and sleep. He can clap, wave bye bye, cruises the furniture, but is still afraid to let go and walk-maybe in a few months. No teeth for him yet-but I can see the 4 top ones under the gums. He will be having his surgery on the 21st, so 9 more days.
Hi, I am Cassie. I am the mom of 2 boys with a 3rd boy on the way. Our soon to be middle child is Aidan, he will be one on July 12, 2008(tommorow!) Aidan was born with Auditory Neuropathy--a type of hearing loss that affects the nerves in the ears. After many tests he was diagnosed as having severe to profound hearing loss in both ears. He has never heard sound.
Aidan will be having surgery on July 21, 2008 to get a cochlear implant. Insurance only covers him getting one implant, so if it is fully successful, then we have a chance of him having 100% hearing in one ear--so an overal 50% hearing. But, it isn't likely to be 100% in one ear, probably more like 80%, could be worse, could be better, let's hope for better. We are hoping to get his other ear implanted within the next 2 years. Only downside? It is a 30, 000$ surgery, one in which we have no hopes of being able to pay for. But something that we would really like to have done so that he can gain more overall hearing and have a bigger chance at success--success in school, success in life.