Long Overdue Update

I know it has been ages since I have updated this blog. I have thought about it often and I know many have requested and update and current pictures. I will add other pictures perhaps tomorrow. I won't go into great detail about why I haven't updated, but suffice it to say that I have been a little occupied elsewhere...

So, to give an update on little Jack...

He has started school this year with the older kids (thus his school picture). He is in a mainstream transitional kindergarten program (TK) that is designed for kids that turn 5 in the fall to give them something a little more than preschool when they are not old enough for Kindergarten. I love Jack's teacher and she has been absolutely awesome. Really, the whole school has embraced Jack. The only "complaint" I would have is that many people (especially kids) give Jack a little too much attention and tolerance for his mischief and orneriness!

As far as his speech... Jack attended a great communication preschool program through the school district along with his traditional montessori preschool program last year. He also received one-on-one pull out speech therapy about 3 times per week. All of this made a big difference in his speech. Most people can understand him just fine now. He does have some lingering issues, such as leaving off ending consonents and some specific consonents (like l at the beginning of words) and consonent blends (like th) that are still difficult for him to use correctly on a regular basis. He is very "coachable" and watches so carefully to see how to make the sound and can almost always get it right when giving it the proper attention. Getting it right all the time when he talks is not quite there yet. So, in addition to his TK program this year, he also attends speech therapy through the school district once a week. His current speech therapist (who is really great) showed me the response difference when she asked him questions while allowing him to see her lips and when sheilding them - wow. He has become quite a proficient lip-reader and is definitely lip-reading to supplement his hearing!

On to hearing... We struggled this year to get what I felt was an accurate hearing test. Jack is a challenge to test right now (as I am sure many kids are at this age) and it takes two good audiologists to get an accurate result. He just starts messing around too much and they have to be pretty inventive to keep him on his toes and interested. Once we got an accurate result, we knew that his hearing has declined slightly. He is in the 35-40dB range pretty much across the board. This is okay, but not great. As a result, Jack has been wearing his BAHA to supplement his hearing while at school. It took him a while to be amenable to wearing it again, but once he got used to it again, I think he likes being able to hear better. He will also be fitted with an FM system in the classroom after the first of the year.

Very funny though - one day I was talking to him and he wasn't answering my question. He was wearing his BAHA and I asked if he had the volume turned up. He replied very flatly, "no." I asked why and he simply told me, "because I wanted it quiet." Now, I have to say it would be nice to have that luxury once in a while!

Once we knew that his hearing was down a little, Dr. Roberson recommended doing a CT scan to see if there was something else going on. With that information and further examining his ears, we know that the ear drum on Jack's right ear has pulled away from the middle ear bones slightly and the left ear drum has some thickening due to a sort of chronic infection. It is believed that the infection in the left ear is related to the skin graft shrinkage behind the ear which has pulled the ear in to Jack's head and pinches off the canal somewhat. This causes fluid to get trapped inhis canal, which then gets infected. Once we had all that information, it became clear that it would benefit Jack to have surgery to correct these issues, improve his hearing and reduce the infections.

So that all brings me to where I am now... waiting for Jack to come out of surgery. Dr. Roberson and Dr. Reinisch are here in Palo Alto operating on another little boy and are doing Jack's revision surgery today also. This is great for us because we don't have to have two separate surgeries. Both Dr. Reinisch and Dr. Roberson have been very felxible and caring as we continue on our journey.

I will post an update after the surgery - maybe tomorrow.