Thursday, November 13, 2014

Long Time No See

It has been a while since I've written, because I haven't felt like writing about what has been going on.  Here is a brief update about the last few months to catch you up on things. 

Last I wrote was in August before Lex's hospital stay.  He was a complete champ through everything, of course.  But a long hospital stay is very physically and emotionally draining for me and I just didn't have it in me to update the blog.  I apologize to those who care about Lex and were waiting for updates.  His sinus surgery went well and his bronchoscopy looked good and the culture didn't grow anything!  Which was kind of shocking and amazing!  Elmo came for his birthday and the hospital staff also made it pretty special, as did the friends and family who came to visit.



Since then I have been pretty preoccupied with other issues going on with Lex.  Even though it is not CF related, I decided I will talk about it here because I know that people who read this blog care about Lex and want to know what is going on with him.  And because it is just another part of who he is that we can understand better now.  Lex is being diagnosed with Autism.  He will not have his official diagnosis until his next appointment, Dec. 16, but the psychologist has told us what the diagnosis will be.  Lex has always had some quirks and strange ways of communicating and things that make him the wonderful, amazing kid that he is.  Now we have a name for and explanation of why some of his behaviors occur, it's because Lex has Autism.  Specifically "High Functioning Autism Without Cognitive Delays and Without Language Delays" if I remember it all correctly.  Quite a handle.  They don't use the name Asperger's Syndrome anymore,  but that is basically what it is.  So I have been dealing with that both mentally, emotionally, and also physically as I fill out questionnaire after questionnaire, take him to appointments, make phone call after phone call, etc.  I'm getting to be in a pretty good place with it, but it's been a journey.

So this brings me to today's appointment and the reason I was re-inspired to start writing again.  Lex had a super awesome appointment at CF clinic today.  It started out great right from the beginning in the little room where they weigh and measure him etc.  He has always been deathly afraid of being measured.  Whether laying on the baby table measure thingy (which he outgrew several appointments ago) or standing against the wall measure thingy, being measured has always been something that caused a complete melt down for Lex (we now know this is due to his Autism).  Therefore, getting an accurate height, which is vital to getting an accurate BMI, has always been a challenge.  Today he stood straight and still, holding my hands and looking at with fear in his eyes and a brave face as he let the nurse get his measurement not just once, but the three times they like to do to ensure accuracy.  I was so proud of him I almost cried!  He gained 2 pounds in the last 4 weeks, putting his BMI at 47%ile.  This is the closest he has been to the 50% goal since he was 10 months old!  He had a minor freak out for the finger thingy, but did ok, and his oxygen was 100%!!

The new fellow we saw today was named Dr. Smiley!  I kid you not, DR. SMILEY!!  I actually asked him if he was serious and told him that was the best name for any pediatric doctor there could be.  And he lived up to it.  He was adorable, friendly, amazing with Lex, and thorough.  I'm just sad that he is a military doctor so will most likely leave us when he finishes his fellowship.  We discussed stopping one of his medications, Flovent (a daily inhaler that is used for asthma and is not proven to help cf patients that don't have asthma).  This is something I have been wanting to do for almost a year and for one reason or another the timing hasn't been right for the doctors to agree to it.  Today they all wholeheartedly agreed that he doesn't show any signs of asthma, and has had no incidents of wheezing, trouble breathing since he had paraflu, so discontinuing the Flovent is the right thing to do.  We have to watch for any new symptoms to occur to be sure, but we are all pretty confident this is one medication Lex does not need.  So 1 medication of the list is a good thing in my book!

He also got a pop in visit from one of his favorite nurses, Amy.  She was on the pulmonary unit during his admission in August and left him this sweet present on the door of his room after he had had a particularly rough day.

 

He was due for his annual labs, so we had to go get lots of blood drawn, which is never fun, but he is such a trooper and gets over it all pretty quickly.

All in all, his health looks great right now and we don't have to go back to clinic for 8 weeks.  That is the longest he has ever gone between appointments!  So I am taking this one as a major win.  I've been needing one of those lately.

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