Well again I apologize for not being able to post the video. No nurse yesterday and again today took away from what time I may have had to get that accomplished. This again will be a brief update as I try to fit this in during a nap Elias graciously offered to take, HaHaHa! We did have another speech therapist over yesterday. She is dual certified as she is also an audiologist which is why she was chosen to fill in for our speech therapist who is out on maternity leave for two months. We discussed the things we have been doing during the trials and even before we had the BAHA. She reviewed what little we had in the way of documentation from the various sources and she of course observed Elias with and without the BAHA device on. While observing him with the BAHA on, she hesitated at first to deny he wasn’t reacting. She was thinking it may be delayed 10-30 seconds because when you have not heard or even as your hearing diminishes when you become aided it is possible not to hear clearly. The brain shuts down pathways that are not used and at times these need to be reawakened or in a case like Elias, developed. This is possibly what the audiologist at CCHMC was referring to, but she was saying it in a much more crass and insensitive way. That point makes complete sense the way the therapist described it. However, she was also noticing how visually enhanced Elias is. As she put it, he is amazingly sensitive to visual stimuli. The tiniest of movements trigger an immediate reaction with him. This is where it can easily get confusing from someone who can not communicate if something is working or not in any fashion. She tested him with sounds out of his visual field and she expressed with what seemed like great confidence that she did not get a response. Not even one she could say gives the illusion like he does if the sound stimuli come within his field of vision. “This is definitely a challenge,” she proclaimed. She is in agreement with us that something is not right, but she does not have enough information to go beyond that at this time. While reviewing the notes and reports we had she brought up another interesting contradiction that we had noticed, but had not played on. Both therapist, Katharine and I are in agreement that Elias is not hearing unaided as the ABR signifies. The CCHMC audiologist states that this is not a concern they are focused on the conduction results. Fine lets go with that point then. The therapist asked me about the ABR done in Maryland. As we discussed it I explained that CCHMC told us that this ABR was essentially garbage and incomplete, citing that the right ear was not tested and the left ear was only tested with partial frequency range. The light bulb went off in my head when the therapist pulled her head back a little, cocked it to the side and frowned as she stared at the audiogram from Maryland. I knew exactly what she was about to say before she even said it. So I spoke, “That doesn’t matter does it?” She shook her head no, but did say it is important because individual hearing level is prone to frequency loss, be it low or high. It is not that we did another ABR senselessly either. In order to get hearing aid settings properly set they needed both ears and the full frequency range. BUT, in Elias case, her opinion looking at the two audiograms a red flag immediately goes up. It seems that CCHMC has literally thrown the Maryland audiogram out of the picture completely because in their opinion it was useless, as they explained it to us. They obviously haven’t compared the two though or they are really missing something. Not having done the ABRs herself it is difficult to know for certain, but logic tells her that comparing the two results paints completely different pictures and create enough reasonable doubt to want to confer further investigation. In a nut shell the Maryland ABR has him with a 45 dB hearing level with conduction, CCHMC has 10-15 dB with conduction. There is also a contradiction of opinion as to the type of hearing loss, Maryland says mixed, CCHMC says conductive. These things alone along with the observations during the BAHA trials clearly demonstrate that we have discrepancy that needs to be sorted. We are getting very frustrated and down right confused about all this. The one thing we really like about this therapist’s approach is if the CCHMC audiologist insists that he is hearing, but has a delay or cognitive related issue then our therapist is going to request the audiologist put in writing what specific responses she is seeing that give her that clear definition so that we may use it as a guide since we are not observing anything. In other words we are going to go to the audiologist a the “expert” and request specific resources since this is obviously a very complex case from her so that we may cultivate those items towards positive gain and progression. Basically, a professional way of saying PROVE IT!
As for Elias and the C-diff, the flagyl is being given and he is improved today. Still a little on the tired side, but compared to yesterday it is a big improvement. So far today Elias has not vomited and his temperature this morning was actually 95.4, normal for him! That is the first normal temp since last Saturday. Despite Elias doing so poorly yesterday it was decided to wait until today to make a decision if he would need to be seen today at FA clinic. Thankfully his improvement keeps us from having to do that. That is all we have time for now. We will try to get the video up this weekend and maybe if Elias is feeling better we can get some new photos too! Have a great weekend.