Hearing - "Good Enough"

So today was our six month follow up with the ENT on Thomas' tubes and his current hearing.  We first discuss where we have been and where we are.  I mentioned the new diagnosis and he looked right up at me.  He admitted he had one other patient who also has Townes-Brocks Syndrome.  Then we both discussed how the diagnosis can help the medical professions but not necessarily change your child.  Did I mention how much I like him?  I do.  Anyway, he said the diagnosis just helps them to narrow down possible causes for the issues.

He then checked his ears.  As before the right one looks fine and the left one looks like its working its way out.  Its been like that for over six months and the tubes have lasted two years now.  So grateful he put in the long term ones so that we aren't having surgery every year.  Thomas does scream when water happens to get in his left ear during bath and will put his fingers in his ears a lot.  We don't have an explanation for this except that his ears just may be sensitive.  It is always interesting to note that his ear tag was in front of his left ear. 

Based on his findings we went to audiology.  Here is where its gets grey, yep, medical is not black or white, it is grey and fuzzy and. . . well, you get the point.  So, both ears showed no fluid so the tubes are preventing any fluid build up.  Yay!  In the sound booth Thomas performed at an acceptable level.  It was explained that at least one of his ears are hearing at a speaking level, which means he can hear and understand sounds that are at the level that most people talk in.  At this time, based on his age, it is 'good enough'.  This means there is a possibility that there are tones he cannot hear in either one or both ears, but for all intents in purposes it is most important for him to hear those talking around him and he can do that.  In fact, they were all very impressed with his speech and vocabulary. 

So, we go back in three months to check that left ear again and discuss if we need to do anything.  I am good with that.  A celebration in my opinion is that as we were walking out of the office the doctor told me that he really doesn't see any reason to suspect a long term hearing issue in Thomas' case.  He was born without hearing and got his first tubes at 5months old.  He then got his second set of tubes 12 months later which are the same ones that are in now.  He did not suffer from ear infections like normal children, but in each surgery fluid was removed.  The doctor mentioned that we could do a MRI to examine the interior of his ear for any malformations or such but that would mean sedation again for him and he doesn't want to do excessive, unnecessary testing.  Did I mention how much I like him?  Oh yeah, I did.  If as time goes on we continue to have issues it is always an option, but overall he feels this is more of a temporary issue and as his ears mature this will resolve itself.  We aren't out of the woods with another set of tubes, but I am over the moon with his words.  He said in his professional opinion he is going to be all good.  He would be presently surprised if something did show or develop.

I will take 'Good Enough'.  I am extremely grateful for 'Good Enough'.  At one time in my life that would have been something that I wouldn't have like to hear, but in Thomas' case I'll take it and smile!!  Next up is our three year check up and our consult with the Endocronoligists. 

I love this verse:

Jeremiah 29:11 For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.

Quick Update - March 5, 2013

I wanted to make sure to thank everyone who helped support Rare Disease Day on February 28th!!  It was amazing to see all the pictures and stories shared on Facebook.  It was also nice to get questions and smiles from others when they saw my ribbon.  I am hoping that in years to come more people will know what it means and what it stands for.  Awareness is definitely key!!

Thomas is doing good.  We are trucking right along towards his 3rd Birthday.  Hard to believe how much time has passed.  He doesn't seem to be showing a lot of problems right now which is wonderful!!  There are some things that make Thomas stand out from his small stature to his wide vocabulary, but medically I think we are okay.  We get his ears checked the end of this month, three year check up next month and then our six month check up on his eyes the beginning of May.  So, we are a little spread out right now with specialists.  I do need to call and get him re evaluated for PT and OT to see where we are and where we should be.  I am always concerned about his back and neck and he does show some signs of discomfort, but nothing too bad.  I am also always trying to get the right nutrition in him which I may seek a nutritionist since this is an area I am not as familiar with.  We also still have the possible referral to an endocrinologists in the coming months. 

As for me, I am good.  I have come to realize that through these past two years many things have hit me hard and I have not learned a good way of coping.  As a result, this mom is in the worst shape of her life and is quite disgusted with herself.  Don't worry, I am quite healthy besides being overweight.  I have a complete physical in October.  I am now taking action beyond anything I have ever done before.  Finances are always a concern for me especially if its for me and not Thomas, but I truly felt God calling me to do this for me and everything fell into place as I could not have planned.  I have a strange peace about it.  So, now I have to put forth my time and effort and do the work.  I feel like I have to, for me, for Thomas and for God who has made this all possible.  I know he wants so much for me in this life and for my sweet boy.  Anyway, I know that is a bit personal but hey it's my blog!!

My ultimate goal: 1 Corinthians 6:19-20

¹⁹ Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; ²⁰ you were bought at a price. Therefore honor God with your bodies.

Thank you again for always supporting, praying and thinking of us.  It is always appreciated and felt!

My silly Thomas!!  Love him!