Tuesday, February 26, 2008

Day 40 - The Phone is fun...

Last night I was on a trip for work. I usually call home in the evening. I often talk to all the kids and last Jack. Jack usually has the phone held up in front of him and he hears me through his BAHA. Well, his BAHA is still broken. For the first time, Jack held the phone up to his ear and had a conversation with me! It was really awesome!

Not much time to write, but here is a picture of Jack's ear. He scratched it a little when he conked his head on the pew at church on Sunday. We put antibiotic ointment on it and it seems to be healing.

More soon...

Monday, February 18, 2008

Day 32 - To hear is to be overstimulated?

Okay, so maybe hearing doesn't always equal happiness when you are not used to hearing. The past several days have been a bit rough. Jack has been hyper, loud, disobedient and a bit sleep deprived. It is hard to sleep when you are used to quiet surroundings when you conveniently turn off your hearing. When your hearing stays on, it is hard to go to sleep. When you can hear, it is also easy to wake up to soft noises in the middle of the night and early in the morning. Sleep deprivation does not wear well on Jack. What a grump. Grumpy Jack often results in grumpy parents. We are trying to keep our sense of humor about it all, but Jack is definitely adjusting to his new sense of hearing. I think it is just a little overstimulation that will wane with time. Interestingly enough, when we turn his BAHA down, he gets angry and turns it back up. That problem was solved today when the BAHA went on the blink. It will probably have to go in for repair. So, that was probably a little blessing from above...

Enough of that. Here is Jack's ear today:

The back is looking like it maybe has some cysts present that Dr. Reinisch may have to remove in the Stage 2 surgery. I am also wondering if the wrinkles will go away. Overall, it is starting to show some more definition and shape and is looking better everyday.

Thanks to everyone who has commented on the blog! We have it set up to send us an e-mail whenever someone comments and we always enjoy seeing those e-mails pop up. We feel very blessed to have such incredible support.

Today we took the kids skiing. Jack hung out with Mom and Dad while Jaden took lessons and Darby and Carter went off on their own for the first time (also the first time we didn't ski and the kids did). We actually enjoyed just a relaxing day in the sun and snow. Jaden did great. Jack was oblivious to everything and just had fun in the snow. I took Jack and Jaden back to the car after lunch to rest while Darby and Carter skied for a while longer. Jaden was so tired after her strenous 1.5 hour lesson that she fell asleep within 5 minutes of sitting in the car. On the way home, I asked her what her favorite part of skiing was and she immediately retorted, "The swings!"

Wednesday, February 13, 2008

Day 27: To hear is to be happy!

Today, we made another journey down to Palo Alto. I may be able to recite the Disney movie, "Cars" by heart before Jack has two ears, but boy does that make the drive easy.

Dr. Colen cleaned Jack's ear a bit, much to his distress. Then Dr. Roberson came in and removed all of the packing. Though Dr. Roberson assured me this was not painful for Jack, he was no less hysterical. Dr. Roberson was granted the gift of amazing patience in the midst of one squirmy, screaming little boy. It was very hard to hold him and not cry with him. Soon enough, it was all out. In a very low and soft voice, I asked Jack, "Do you want your Spiderman snacks now?" and he quickly replied, "Yes." He is most definitely hearing very clearly! Just amazing. He swiftly recovered from all the trauma and was a very HAPPY boy for the remainder of the day. When we went outside, a large truck was driving by the office behind some bushes. Jack located the sound of the truck immediately and tracked it as it passed the office even though it was behind the bushes. Sound localization has been a huge struggle for Jack and that was really just incredible to witness.

Dr. Roberson says that the skin grafts have healed very nicely and that the ear drum is secure all the way around. He says it looks really good.

We will see Dr. Roberson again on March 4 for a hearing test and we will know more then. I can say without a doubt that Jack is hearing MUCH better than before.

Dr. Reinisch sent an e-mail this morning encouraging us to clean Jack's ear and remove the sutures. He is warning us that if we leave them in too long, it will increase scarring and leave suture tract cysts. Dr. Roberson cleared Jack for a bath tonight, so I knew we would be cleaning that ear (and the rest of the grubby little boy that hasn't had a bath really in nearly a month!). In hind sight, I wish we had just rubbed on the ear like Dr. Reinisch suggested last week. I didn't realize how easily some of it would come off.

So, first we used q-tips and hydrogen peroxide and just rubbed on the stitches (while Jack watched a movie). A lot came off with that.

Then, a BATH! I really can't believe he hasn't had a proper bath in nearly 4 weeks. Gross. Anyway, he was thrilled to be taking a bath and could hear me even with the little cotton in his ear.

While he was in the bath, I washed his hair and tried to get some of the scabby dead skin off his skin graft sites. It looks like a really bad case of cradle cap and that stuff is just not coming off. I will just have to keep at it. I also washed his ear a bit more. Here is what it looked like after all that:

It is definitely getting better every day! Today was a great day and it was fun to see Jack so bubbly and happy and conversational.

Many people have asked, so I will share that we have Jack's second surgery scheduled for May 12. I really feel better about that after today!

Sunday, February 10, 2008

Day 22 - Little sprinter boy...

Kind of like the Little Drummer Boy, only different. I don't know what got into Jack, but he was SPRINTING everywhere today. He is just a happy little guy. This morning, we took the cup off his ear and let him just leave it off. He was in my bathroom and was looking at his ear in the mirror. He kind of tilted his head and said, "That's my new ear." Then, he smiled...

So, I said I would post a picture of the sore spot from the cup. This picture is from two days ago, but it still looks the same.

Today, we went to church and had Jack wear the cup with the velcro strap and no adhesive to see how it stayed on. It was okay for church, but it does not stay in place well enough like that for all day use. We don't want to put the sticky tape in his hair, so we went back to the cup with the netting tonight and will try to keep it like that for the rest of the week. We actually left the cup off his ear for most of the day today. He did fine. But this week, he is going to start going back to preschool in the mornings and we would rather be safe than sorry. Since Dr. Roberson modified the cup, it is not bothering his head so much, so I think it will be fine.

Here are some pics of his ear before we put the netting and cup back on:

We will see Dr. Roberson on Wednesday this week and he will take out most of the packing. I think we will see a big difference in Jack's hearing this week!

More soon...

Tuesday, February 05, 2008

Day 18 - Trip to CEI

Today, Jack and I went back down to Palo Alto to see Dr. Roberson and Dr. Colen again. I understand that Dr. Roberson asked us to come down a day early because there was concern over the yellow gauze that we couldn't remove. I was a little worried that he saw something of concern in the pictures that I have been e-mailing. So, I was glad to hear that everything still looks good. He said there was a bit of debris in the canal and that was normal. We agreed to come back down next Wednesday and he said he will take most of the packing out at that time. Then we will be able to tell a lot more about the hearing.

I asked him about pre-school and going back to a normal routine. I think it is safe to say that Jack and I are tired of so much together-ness... I am ready to get back to our normal routine. So, he said that he feels that things are pretty well healed at about 3 weeks. That is this Friday - Yipppee! I already feel guilty for letting him ride his little scooter around the house... His ear still looks very fragile to me, though. I think we will probably try to keep the cup on for an extra week (Dr. Reinisch is saying to leave it off after this week) and let Jack go back to preschool in the mornings only. They don't go outside in the morning and everything is more calm. Then, back to normal the next week.

We took the cup and dressing off again - more hysteria - more bribery. One thing that I have not written about is the sore spot that the top of the cup has created. I will try to post a picture soon. It really looks awful and very sore. Dr. Roberson and I discussed it. He explained that the blood flow to the skin is compromised because of the membrane harvested from under the scalp. We unknowingly had his BAHA softband on the top of the cup the first week and probably exhasperated the trauma to this spot. I have seen this on other blogs, but Jack's spot is really the worst I have seen. Dr. Roberson modified the cup, cutting out a little wedge so that there is nothing touching his head where it is so sore. This will allow it to heal, though I can tell this will take a long time.

I forgot to ask about washing his hair and had to call from the car on my way home. Dr. Roberson asked us to wait until next week. This is just not the same as a Medpor ear reconstruction without the ear canal. I know we would have washed his head and given him a bath by now if not for the ear canal. Good thing its not summer or we would have one stinky, grubby boy on our hands.

Anyway, I know that several people knew we were headed to Palo Alto today and I wanted to post a little update.

All for now...

Monday, February 04, 2008

Day 17 - Yellow gauze be gone

Last night, I emailed some update pics to the Doctors. Dr. Reinisch e-mailed me back and said Jack's ear looks great, but that we need to get the yellow gauze off. The longer we leave it on, the more the hair will grow into it. He also said we should wash Jack's hair and clean his ear up. We are not clear on how to do that and whether we need to take precautions to not get the ear canal wet, so for now, Jack is going on week 3 with no bath. His hair is just growing back, so it doesn't really look dirty and he is not itching his scalp, so I was not so worried about it. But Dr. Reinisch was pretty clear about that gauze...

So, tonight we removed the netting again and to my surprise, the cup had almost completely come loose. So, it was a good thing we took the netting off, or we wouldn't have noticed that. We then soaked the gauze with wet washcloths and I just started gently pulling. After an hour, I finally was making progress working around his BAHA softband.

Jack was very patient (okay, I bribed him again and let him watch a Thomas movie while I did it). He kept turning his head and saying, "Go slower mommy!" I pulled in the direction of the hair with two pieces - top of the head forward and back of the head downward. Luckily, the blue stitch that I thought was left behind was only in the gauze, no skin involved. I was told that stuff would just kind of fall off after a while, but man it was really stuck!

Here is the top of his head at the end:

Finally, it was all off and he had two pieces of chocolate. At this rate, by the end of the year we will have a kid with two ears and no teeth. We sort of cleaned on his ear a little and then put the cup and netting all back on. We are down to our last cup until the supplies from Dr. Reinisch's office arrive tomorrow.

Dr. Roberson's office called and asked to see Jack tomorrow instead of Wednesday, so we will go down tomorrow.

More soon...

Sunday, February 03, 2008

Day 16 - Dressing Change

Pictures of Jack's healing ear below...

Jack continues to do well. This week, he went to his speech pre-school two days. I stayed with him once and he went and stayed by himself on Friday. The teachers have remarked that he is talking a lot more. I notice that he is placing consonents at the end of words spontaneously. Specifically, he is putting "s" on the end of plurals. The "s" sound is very soft and hard for him to hear, so a big thing to get that on the end of a word! He is also a lot more conversational. Instead of just stating what he wants, he is telling me more about things he notices. For instance, he will tell me, "Mommy, look, a big truck!" Then, when I say that I see it, he will say, "I like that big truck!" And then, as we pass it by, he will say, "Bye, big truck!" It is fun to see the shift. I always wonder if it is related to better hearing...

So, today, we changed his "hat." While he was eating a fruit snack, I took off the netting while he sat in Chris' lap. I let him just sit like that for a while. Then, I started pulling off the gauze padding little by little and he mostly didn't notice what I was doing. The yellow gauze protecting his skin graft is supposed to just come loose. Though it does not seem to be painful, it is still very much stuck to his head. So, I just trimmed the edges and we just left it on. Here is a picture of the skin graft site:

Then, I got some finger nail polish (acetone) and dipped a q-tip in it. I slowly started rolling the q-tip down where the cup was adhered to his skin and sure enough, it started coming off. As long as I went really slow, it came off relatively easily. Jack was definitely not happy about it, but he was not hysterical like he was the last time. We put bactiricin on his ear, replaced the cup with a new, clean one and put a new stocking on his head. He definitely prefers to have his ear covered.

So, here are pictures of his ear today:

It seems that the swelling is going down and it looks a little better every time we take the cup off.