Hmm…where did I put my cape?

Yes, as in my superhero cape.  Oh, You didn’t know Moms were superheroes? How else do you think we can manage to run the house, keep the children fed and bathed, all the homework done, doctors visits attended, work in OR out of the home, schedules maintained….surely it takes SOME kind of super power to be able to balance all that! I truly believe that all mothers possess an inner superhero, and it’s about time for me to again channel mine. We’ve had a couple quiet months appointment wise, but that is quickly changing!

Look at that big boy waiting for the doctor!

Look at that big boy waiting for the doctor!

First, we had an appointment today with our ENT (Ear, Nose and Throat Doctor) to follow-up on Braxton’s ear tubes and hearing aids.  I wasn’t expecting the news I received.  First, the good news, Braxton’s tubes are still in place and look clean and dry. Woo! The doctor said tubes typically stay in place about a year, which we are coming up on next month, so he just said to keep an eye on them to make sure they don’t fall out.  If they do, we’d have to repeat the procedure.  I again mentioned Braxton’s constant congestion.  It really just continues to get worse for Braxton. He always sounds like he has a cold.  The Doctor said he still thinks this is due to poor oral motor muscle tone and didn’t think it would be successful for Braxton to have his sinuses probed because his sinuses are probably too small to really have benefit.  It will unfortunately just take more time and as he grows his sinuses may also help open up.  He mentioned that since Braxton also has a high arched palate, that takes up some space in the sinuses which could also cause the back up. I did ask what he thought about having his throat scoped to check for damage from all the vomiting or anything else that may help us in deciphering why Braxton refuses to eat.  He said it was probably more a neurological or sensory issue instead.  Then, the not-so-great news. He looked in Braxton’s throat and said Braxton’s tonsils are growing much faster than his mouth and are too large.  He didn’t recommend surgery right away, but he said it’s very important to now monitor Braxton’s sleep due to the enlarged tonsils.  I will have to wait for Braxton to fall asleep for about an hour and then watch him for about 10 minutes to see his breathing rhythm, note any snoring, and also note any pauses in breathing.  Pauses 2-3 seconds are not cause for concern, but pauses 5-10 seconds to where he gasps for air are very problematic. He also mentioned that having large pieces or amounts of food in his mouth would cause him to gag/choke due to the size of his tonsils.  This could very well be why he isn’t eating.  I’ll have to watch him when we feed again to note any gagging/choking.  So far it’s just complete refusal, and the few bites we do get in he does ok with. At least that I can recall.  Ideally, we’d like to avoid having the tonsils removed because not only is the recovery difficult, it could also cause extreme setback when it comes to eating, however, breathing trumps everything.  If he isn’t breathing correctly, we need to remove his tonsils.  Ugh, more surgery. Poor kiddo 😦 After we met with the ENT, we went over to see the Audiologist for an in-office hearing test.  Braxton is still a little young for good results, but he did ok with the booth test and the results were fairly similar to the last ABR we had.  The audiologist said she does think we need to have at least one more ABR to confirm the results of the last test and to make sure his hearing hasn’t gotten any worse.  We’ll try to get that set up this summer.

I’m enjoying the next 2 weeks of quiet because I have my work cut out next month.  We just added a visit to an Occularplastic Surgeon to discuss the possibility of the Jone’s Tubes should his ophthalmologist not be able to probe his tear ducts as we discussed last visit.  We will be scheduling the probing and irrigation this summer, and if that still doesn’t work we will have the plastic surgeon on hand to go ahead and do the reconstructive tear duct surgery. We’ll probably need to do some imaging since there is no way I’m letting this doc break bones without even checking the structure and investigating what else could be the issue.  That means we’ll be tacking on all the imaging everyone else wants done too.  Most likely an MRI of the Brain and Orbits will be done, and I know ENT mentioned a CT of the inner ear which I’m sure we can coordinate.  Will probably try to get that set for early May, because April is too full.  We then have our EEG scheduled the next week per our last neurology visit to check on brain activity and make sure there is still no seizure activity happening.  We will also see our Geneticist next month to go over the results from our Exome Sequencing.  Fingers crossed that we will finally get a diagnosis, or at least some hint about the underlying cause of all our issues.  All that on top of our regularly scheduled therapies.

Annnnnnd, Joseph just received a promotion at work! Yayyyy!! However, that means more training and certifications which will require him to be away from home. Boooo! Thankfully, he was able to make some calls and arrange the initial training around next months appointments so I don’t have to go it completely alone nor completely rearrange everything.  I’m a little uncertain of the schedule after that, but I’m mentally preparing for the time apart.  I’m very excited and proud to see his hard work finally paying off! It’s just like someone came and kicked the dirt up from around us.  Dealing with the initial shock and confusion of the kick is the hard part, but I know when all the dust settles, everything will be just fine.  🙂

Welp, I need to get back to looking for my dang cape!? I definitely need to channel my inner Supermom for the next few months.

Images from: Riveter Mom , Wondermom , and SuperMom

3 Comments

Filed under Family, Kids and Family, Life, Special Needs Child

3 responses to “Hmm…where did I put my cape?

  1. Joanne haggerty

    Hi, I’m the mom of two special needs children, 22 and 13, very different issues but I can relate to all the craziness that comes along with this journey we have been chosen for, support is good, hope you find peace, it sounds like you’re doing an awesome job. you’re boy is lucky to have you!
    Warmly,
    Joanne

  2. Pingback: Appointment Recap and Surgery #4 | Journey Full of Life

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