100+ degrees out and he is wearing a winter hat.
It ties under his chin but he can still get the CI off.

This week Nicholas only had speech and OT. His physical therapist is on vacation this week and next. He did well in both. He is responding to 4 of the ling 6. He isn't responding to s or sh sounds. He has a mapping session with the audiologist tomorrow so we will see what she says about that. Maybe she will have some other idea to keep him from pulling the CI off his head too. It is really a challenge to keep it on. I don't think the sound is bothering him it is just that he knows something is on his head so he tries to get it off. On Friday he has appointments with the GI doctor and the pulomologist. Not much to report so I posted extra pictures.

Finally 19 pounds

Allergy testing

He is going to hate us one day for putting a picture of him wearing a durag on here.

Nicholas had his follow up appointment with the pediatrician for his ear today. It looks great! He also gained more weight and finally hit 19 pounds. He is 19lb. 1oz. The doctor is setting up a dentist appointment for him. His teeth went back to brown. It is very weird. They came in brown then looked so much better because they lightened up and we just yellow, but they are back to brown. I don't think there is anything a dentist can do since they are discolored either from medication or from his liver in such bad shape when he was in the NICU. They aren't stained, the tooth buds were effected, so whitening products won't work. We'll see what she says. He did really well in therapy this week. His physical therapist thinks he will be sitting in about three months. Maybe it will be a birthday present to himself. His play time will be so improved when he can sit. In occupational therapy he is doing well transferring toys from hand to hand. He is using his left hand a lot more and it isn't clenched as much. His thumb is a lot looser too. It used to be hard to get his thumb to open away from his first finger. In speech we are supposed to work on six sounds called the Ling 6. They are ah, oo, mmm, ee, sh, and s. We are supposed to have a toy that represents each sound and make the sound six times then show him the toy so he can learn what toy corresponds to each sound. Both his speech therapist and his pediatrician commented on how he is more responsive with the cochlear implant. He is definitely hearing things. He can hear the microwave beep from across the house. We turn it up to level 4 this week and he goes for a mapping session next week already.

Little Stinker

Nicholas has learned how to take everything off his head. It has become a challenge to keep his CI on. We have tried hats, bandannas, a buff, www.buffwear.com, durags, and toupee tape. He pulls all the covers off his head within a few minutes. The toupee tape was holding up for a few hours at a time but he just pulls that off now too. That tape is STRONG! It is hard to pull it off the few times he still has it on at bed time. The only thing that he hasn't pulled off is the durag because it is tight. I tried it on to make sure it isn't too tight, and it isn't, but I don't really like having something that tight over his shunt so we aren't using it. So we are going through a lot of toupee tape right now. Once he is sitting it will be a little better since his rolling doesn't help keep it on his head.

This week he has early intervention, speech, PT, and OT. We are also going to try to get him into the pediatrician for a follow up on his almost ear infection from last week. Thanks to TWC we don't have internet at home for more than two minutes at a time so I can't load any pictures right now.

Milk Allergy

Last week Nicholas had an appointment with the pediatric allergist. This doctor specializes in food allergies. Nicholas had skin testing done to see if we could figure out what caused the EE. They use a cartridge thing with 6 spikes in it. He had 3 of these done on his back and a few single pricks. He hated it! Well, he is allergist to cow's milk and cockroaches. I think it is really strange that they test for cockroaches. The doctor said we can give him a soy formula rather than EleCare. The EleCare is over $30 a can and it smells horrible. So we are trying Enfamil Enfagrow Soy. It is the toddler formula and the only one that doesn't come flavored. The milk based toddler formulas come in vanilla and chocolate. Not fair! This smells horrible too so we are flavoring it with strawberry syrup. The whole time he was on EleCare we were flavoring it with caramel syrup because he liked it better than strawberry. Well there is milk in the caramel syrup so he can't have that anymore. Besides the allergy doctor he had is usual therapy appointments.

On Saturday we thought he had his first cold. He had a runny and stuffy nose. He also had a low grade fever so we took him to the doctor yesterday. It was his first sick appointment. The doctor saw fluid in his ear and said we caught it right before it turned into and ear infection. He gave him some antibiotics and he is supposed to go back for a checkup next week.

Fourth of July

Nicholas and I had a full day on the 4th. We started with a BBQ at a friend's house. Then we went to the Freedom Festival at the outdoor mall. They had the parking area closed off and had tents set up with arts and crafts and other vendors. They also had bands all day long. He heard his first band play. They were called Black Bottom Muffin or Brown Bottom Biscuit- something like that. We stayed there for a couple of hours then went home so he could eat and cool off. Then we went back to the BBQ for dinner and ended the night back at the Freedom Festival for fireworks. I didn't have his CI turned on for the fireworks because I figured it would scare him and if he pulled it off and threw it I would never find it in the dark. He enjoyed the fireworks and smiled at them. He got crabby in the car on the way home. It was way past his bedtime and it took half and hour to get out of the parking lot- I was crabby about that too. Next year we are going to park in a neighborhood across the street and walk. Overall he did really good for being out of his element all day.

More about CI Activation

When we got to the audiologist's office the first thing she did was put the processor on Nicholas and run a test on the computer. He wasn't hearing anything yet but the test was stimulating his brain with different levels of sound and the computer would show where his brain responded. It was kind of the same idea as the ABR test he had last year. This told her the quietest and loudest sound his brain responded to and how to program his processor. Then she turned it on and he responded by crying. She said crying is the best response he could give because it shows there really is a difference when he has the CI on. She then tried different levels of sound to get it to where he still responded when it was turned on but didn't take long to settle down. She said she wanted him to show a response when it was turned on and we will go back in a month for reprogramming. There are four volume levels currently on the processor. We are going up in volume each week. She said that your brain gets used to a volume over time and it needs to be increased. Just like your body gets used to exercise and you have to mix it up to still see results. He also saw the doctor who just checked the incision site and said it healed very nicely. He was happy with Nicholas' response when the CI was turned on. The piece on his head is magnetic but it is still going to be a challenge to keep it on his head. If he brushes his head again something like his stroller or car seat it will fall off. He can also just pull it off his head. Another mom gave me some really good tips on how she keeps her son's on. Here is their blog. http://www.kinnickandcarver.blogspot.com/ Right now we are using toupee tape and one piece is lasting a few hours unless he is really rolling around. He seems to be getting used to it and doesn't cry as long when we turn it on. He also seems to be hearing things because he will pause and look around. He looks at his toys differently now too if they make noise.

CI Activation Video #2

Bon Jovi - Hallelujah

Play the Bon Jovi video then scroll down and start the activation video so you can hear the song in the background when you watch the activation.

Nicholas Matthews CI activation