I had to share this, Dallas crawled a few strides all by himself today!!! It's a start, we are so excited!
http://youtu.be/ajXPNCn8d1U
D-man (aka Dallas Bauer) was born on June 9, 2010 and diagnosed shortly thereafter with CHARGE Syndrome. While this does not define who he is, it does contribute to his extraordinary character and determination. It also explains some of his "adventurous" life!
Wednesday, February 22, 2012
Monday, February 20, 2012
There have been lots of little things keeping us busy with Dallas over the past few weeks. We have been emerging from "baby" stuff, to "big boy" stuff. :) I can't think of a better way to put it, but it feels like our planning has changed from day to day, to looking ahead a little more and deciding what things currently in our schedule are working and which are not.
We are starting PT at Children's 2x/week, beginning this week for 4 weeks total. Dallas has been on the brink of crawling and getting himself sitting/standing for quite some time now and we decided to increase the therapy short-term and see if it will help get him over the hump. Also on the line of PT, Dallas was fitted for ankle orthotics last week. He will get them on in about a week or so to help stabilize his ankles.
From a developmental standpoint we have started to think more about potential play groups or learning environments that might be good for Dallas to start getting used to. I have met with a school, "Northern Voices," located in Roseville. This school only has kids there with a hearing loss. Most of them have cochlear implants and some have hearing aids. This is an expensive school and the focus is oral communication. Dallas could start there as soon as he is walking. They have programs ranging from infant/toddler to Kindergarten. We are starting a 6-week trial this Friday, to get an idea if this is a school we would consider for him. It's all about finding the right fit for Dallas and for us. There are other options that are less focused on oral communication, but also come at no cost and provide special help for Dallas in hearing, playing, communicating, and learning social skills. We aren't making any decisions right now, just getting a feel for the different options.
Dallas is done with feeding therapy for now. He is chewing many things and we continue to work at home on eating/drinking skills, but he does not need to be seen in clinic! We have decided to hold off on the VitalStim Therapy for now. Again, this therapy is aggressive (3x/week) and would possibly help Dallas get a better swallow so that his liquids would not have to be thickened. We have decided that we will let him get his bearings with chewing before we introduce another therapy. This type of therapy doesn't fit into our schedule right now either.
About 3 weeks ago, Dallas had his first successful testing done in the sound booth. Previously, he did not respond well in this environment and had no solid documentation relative to what level his hearing was at. NOW, he is recorded as having only a mild hearing loss in his right ear (the side with the implant). This was an incredibly exciting day and also gave the audiologist what she needed to make a mapping adjustment to his sound levels. We can now consider the implant a "success." These tests do not tell us that Dallas will or won't talk. We only know that he is hearing. What his brain does with the information, is unpredictable and only time will tell.
Cochlear Implant #2 will take place on Monday, March 5th. We met with the surgeon and his outlook on the success rate is 50/50. We do not know if the auditory nerve on the left side is viable. The MRI and CT scan describe it as "severely hypoplastic," which means "not well formed." Why are we doing the surgery then? Because the surgeon believes that an MRI is not something to hang your hat on. He has done surgeries where things have been different "inside" versus on an MRI or CT scan. We are taking a chance and hoping that Dallas can get some hearing on the left side as studies have shown that having bilateral implants makes a significant difference.
Finally, Scott and I have started sign language classes again and we are also having someone come into the home once a week to provide further sign language instruction. We want to learn as much as we can and start incorporating sign into our everyday life. Even if Dallas becomes "oral," knowing sign language will be a wonderful second language and be essential as we interact with other families in the future.
We are starting PT at Children's 2x/week, beginning this week for 4 weeks total. Dallas has been on the brink of crawling and getting himself sitting/standing for quite some time now and we decided to increase the therapy short-term and see if it will help get him over the hump. Also on the line of PT, Dallas was fitted for ankle orthotics last week. He will get them on in about a week or so to help stabilize his ankles.
From a developmental standpoint we have started to think more about potential play groups or learning environments that might be good for Dallas to start getting used to. I have met with a school, "Northern Voices," located in Roseville. This school only has kids there with a hearing loss. Most of them have cochlear implants and some have hearing aids. This is an expensive school and the focus is oral communication. Dallas could start there as soon as he is walking. They have programs ranging from infant/toddler to Kindergarten. We are starting a 6-week trial this Friday, to get an idea if this is a school we would consider for him. It's all about finding the right fit for Dallas and for us. There are other options that are less focused on oral communication, but also come at no cost and provide special help for Dallas in hearing, playing, communicating, and learning social skills. We aren't making any decisions right now, just getting a feel for the different options.
Dallas is done with feeding therapy for now. He is chewing many things and we continue to work at home on eating/drinking skills, but he does not need to be seen in clinic! We have decided to hold off on the VitalStim Therapy for now. Again, this therapy is aggressive (3x/week) and would possibly help Dallas get a better swallow so that his liquids would not have to be thickened. We have decided that we will let him get his bearings with chewing before we introduce another therapy. This type of therapy doesn't fit into our schedule right now either.
About 3 weeks ago, Dallas had his first successful testing done in the sound booth. Previously, he did not respond well in this environment and had no solid documentation relative to what level his hearing was at. NOW, he is recorded as having only a mild hearing loss in his right ear (the side with the implant). This was an incredibly exciting day and also gave the audiologist what she needed to make a mapping adjustment to his sound levels. We can now consider the implant a "success." These tests do not tell us that Dallas will or won't talk. We only know that he is hearing. What his brain does with the information, is unpredictable and only time will tell.
Cochlear Implant #2 will take place on Monday, March 5th. We met with the surgeon and his outlook on the success rate is 50/50. We do not know if the auditory nerve on the left side is viable. The MRI and CT scan describe it as "severely hypoplastic," which means "not well formed." Why are we doing the surgery then? Because the surgeon believes that an MRI is not something to hang your hat on. He has done surgeries where things have been different "inside" versus on an MRI or CT scan. We are taking a chance and hoping that Dallas can get some hearing on the left side as studies have shown that having bilateral implants makes a significant difference.
Finally, Scott and I have started sign language classes again and we are also having someone come into the home once a week to provide further sign language instruction. We want to learn as much as we can and start incorporating sign into our everyday life. Even if Dallas becomes "oral," knowing sign language will be a wonderful second language and be essential as we interact with other families in the future.
This was their idea of sitting together for a picture. |
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