How's Hudsyn??

We saw Dr. Smith, Hudsyn’s surgeon this morning. He said she looks good but definitely has a fistula near the front of her Palate. A fistula is defined as “an abnormal or surgically made passage between a hollow or tubular organ and the the body surface or between two hollow or tubular organs.” We knew she had a “hole” in the front of her mouth right behind her gum line and that they would fix it when they did the bone graft in the future (somewhere between 7 and 9 years old); but, we didn’t know that part of that hole was this fistula that formed after her Palate surgery in September. The hole is about as big around as the tip of my pinky finger. But, as long as it doesn’t begin to cause her any problems eating or anything we will stick to the plan and fix it when she is a little older. If it does happen to begin to cause any issues they will repair it sooner.

We will also watch her speech and likely start her in some sort of speech program as soon as she starts saying a few more words. There is also an additional surgery she could possibly need in the next couple of years to aid in her speech development. But, we are kind of in a “hurry up and wait” phase right now. We will wait to see how her speech progresses and how (or if) the fistula affects her eating and drinking.

Everyone in the doctor’s office thought she was adorable of course, and she cried a little when he looked in her mouth but quit as soon as he was done which was a big plus! She even showed off for him a little :)

As we were leaving the office, Dr. Smith introduced us to a young man (probably 16-18 years old) who was just “finishing up” on his cleft/surgery journey with Dr. Smith. He told the boy and his mother “this little girl is just beginning her cleft journey and you’ve just finished yours!” The boy smiled from ear to ear. We shared the elevator with them on the way down and Hudsyn flirted with him the entire time. It is always comforting to see other kids in his office and know that there are so many people who have been where we are.

Although I still struggle with “why” my Sweet Huddy girl was chosen for this particular journey, I am reminded frequently how blessed we have been by the people we have met along the way. Experienced “cleft-moms” have blessed and helped me in so many ways and I hope I am able to do the same for others in the future.

CONVERSATION

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I’ve been terrible at blogging lately, so I’m going to try to do better this year! :)

Since her surgery in September, Hudsyn has had several ear infections, a perforated ear drum, and just lots of “ear trouble.” She never had a SINGLE ear infection or issue prior to her Palate repair and tube placement surgery and they have been constant since. We have been back to her ENT in Oklahoma City a couple of times trying to figure out the next step. A couple of weeks ago when we were there he advised us to attempt to break up the blockage with a peroxide/water mixture for 7-10 day’s and then come back. He also ordered a hearing test. Although he wasn’t extremely concerned, he did feel that we should look into the reasoning for her lack of speech. She says “mama” and “uh-oh” and has for a couple of months, but has not expanded her vocabulary past that. I know that she hears, I just don’t know what she hears. She responds when I speak to her, and she makes lots of sounds and babbles. She knows her name, and words she hears a lot - like “no.” :) And she’s mastered the art of talking back! At this point, I’m kind of thankful I don’t know what she’s saying when she starts that business...

So, today, we saw an audiologist at the OU Allied Health Services Center for the hearing test which consisted of Hudsyn and I sitting in a sound chamber and the audiologist playing sounds on either side of us to see if she would respond. Afterwards we met with the audiologist who confirmed that she is hearing at a “lower than normal” level - she has mild hearing loss. It is likely “conductive” hearing loss, meaning the sound that enters the ears has trouble passing through the eardrums to the inner ear. There are many causes for this type of hearing loss, including both fluid in the ears and ear infection. Huddy has had lots of both recently so, there is a chance that once these issues are taken care of she will regain some or all of that hearing.

I was expecting a much more invasive “test” - more like the newborn screening with leads on her head. Clearly, I’m not an audiologist, so it doesn’t really matter what I think, but... I was hoping for more definitive answers about her hearing. :) Because we were just in a room wanting to see if she would respond to sounds in general, we don’t know anything about the level of hearing for each ear individually. So basically, what we know is that the best hearing ear is hearing at a lower than normal level at this point. But, who knows which ear that is - or if they are hearing relatively the same!

Then, we saw a PA at the ENT’s office. She did confirm the tube in the left ear was blocked and there was fluid in BOTH ears. She wasn’t concerned with one tube being blocked and originally wanted to just continue to watch the other one to make sure it didn’t become blocked or stop working. According to her, having one “properly” working ear is sufficient for a child to hear well enough to continue to expand their vocabulary, etc. She also said that it was safe (for the health of the ear drum) to watch a situation like this up to 9 months without action. However, when I told her that Hudsyn absolutely is not herself and has been pretty miserable the last couple of weeks, she thought a little differently...

So, after quite a bit of discussion, we agreed to use the prescribed drops and come back January 24th to re-check the ears. At that point, if the tube has not cleared and there is still fluid present, we will proceed with replacing the tubes. Although I’m not excited about her having to possibly undergo another surgical procedure, I so want her to feel better so maybe this will do the trick?

My poor Huddy girl absolutely freaks out when a nurse or doctor of any sort even comes near her. So, it was a really long day for her. She had a couple of MAJOR meltdowns when they needed to look in her ears.

She was happy to get to do some shopping and get in lots of giggles between meltdowns. Honey, Hudsyn, and I had a quick but fun girls trip!