The ENT and beyond

by Kristi Van Dyk

So, I'm learning, quickly, that medical updates on Joshua just really aren't my thing. I can't get passionate about writing about doctors appointments or unknowns or waiting, etc. It doesn't inspire me. 

BUT ... I know our prayer warriors are interested in updates, and I love how faithfully our followers do commit things to prayer. So, here's the current scoop: 

We last left off after the visit to our neurosurgeon where we learned that Spina bifida was out and that the missing pedicle was a non-issue. We learned that the doctor wanted more information regarding some other "differently shaped" pieces of Joshua's head - and he was hoping to combine that with the ENT's information when we visited THAT doctor the following week. 

Steve was able to get some time away from work and stay at home with Maddie and Benjamin while Kayleigh came along with Joshua and I to GR for the ENT. She was a great help, and she thoroughly enjoyed learning about the doctor's insights on her brother. BUT, before we saw a doctor we saw an audiologist who worked to try and get a baseline hearing test for Joshua. This proved to be an interesting venture. Having been a child with many, many ENT visits in my day, I was all too familiar with the obligatory tympanogram. The audiologist could get NO reading on either ear with this machine. This was concerning to us both. During the hearing test Joshua had very low readings, so low she wasn't sure he was totally understanding the test (I'll be honest it was pretty hard for me to follow and I've taken a bazillion of these babies). The end result was a conclusion that we really need a BAER hearing test (which is given under complete anesthesia). 

** Kudos to the doctors for holding the MRI's and CT scans for the ENT who would definitely did add more procedures on to the day!!!***

The general conclusions were that Joshua would definitely need one, if not eventually two, BAHA devices to help him achieve normal (audible gasp) hearing. When the test BAHA was put on his head (he DID NOT play with it ... he seemed almost instinctively to know this would help him), his test improved DRAMATICALLY ... I was excited by this and really, now, can't wait to get him his soft band BAHA. 

After the hearing test, we were told we had almost an hour to wait, but in typical "we care about families and children" fashion, we were seen right away. No wait necessary. 

The ENT spent a great deal of time examining Joshua, watching his responses, observing his attempts at producing English, watching his communication in Chinese with his sister. "I don't believe the zero tympanogram."  
He went and got the machine again and got a normal reading! He said, "it's tough to get a false positive on these things. This right ear may simply be blocked with fluid and/or covered up by the misshapen cranial structures.  I'm anxious to see about the BAER ... it might be that we can fix the right ear with some procedures and then we are left with the need for only 1 BAHA, to cover the left ear!" WHAT.A.BLESSING. that would be for all of us!!! 

In general, the office staff could not believe a). how well Joshua was communicating and responding with the hearing he had (they all believed he must be a smart kid!) b). that he has been home for less than a year. (Admittedly he was killing it with the behavior that day). 

We could use specific prayer for what lies ahead in the following areas: 

1. Prayers that our children's special health application flies through the state government and we can get Joshua's supplementary insurance ASAP! The audiologist was adamant that we put that all in place first before we get his BAHA. (we aren't in a position to argue, so we are following that process).

2. Prayers that we are able to keep Joshua calm and as comfortable as possible for his "monster" appointment on the 25th of July. Steve has a HUGE day at work that day and can't come, so I'm taking Kayleigh along for back up. She is the best at keeping Joshua calm and informed, so she's my choice :). BUT Joshua will have 3 tests under anesthesia: BAER hearing test, MRI on his head and his ears, a CT scan on his head/ears as well. Upon waking, and eating, we follow up some 2.5 hours later with the neurosurgeon to review the results. This will be a LONG day all taking place at the hospital. 

3. Joshua stinks at being hungry ... this is typical for any kid, but kids from hard places often have really tough relationships to food. Telling him from 6:00 p.m. until almost 11:30 a.m. the next day that he can not eat eggs, or pretzels, or any of his favorite snacks will be difficult. Only giving him the clear liquids + popsicles in the morning will rattle him something fierce ... it's not what we ideally want going in to a big day, but its unavoidable. Pray for him with regard to that. 

4. Pray that our next steps provide us with some clear answers and direction. Language growth is coming at our house with this smart little boy - but, I can't help but wonder how much faster it would progress if we could help him hear things more clearly. 

Thank you for your faithful prayers and love for us in this journey,

Photo credit: Lauren Manting Photography

Photo credit: Lauren Manting Photography