Caleb Update #1,245,873

For his entire life we have noticed that Caleb has no muscle tone or shows no resistance under his arms when you pick him up.  His arms flopped straight up in the air when you picked him up and it felt like he would slip right through you.

When he should have supported some of his weight when you held him on your hip…he didn’t.  It felt like you were carrying dead weight.  He was considered a “floppy baby”.

Since the last 2 months Caleb has been asymptomatic and his labs were, for the first time ever, within normal range we decided to hold off on any testing and just keep our eye on him.

Shortly after beginning to crawl his arms started giving out on him. It took us awhile to figure out what was happening but once we did we realized how often it was happening and mentioned it to the doctor. During the same time we also noticed that when he would be on his back and you would lift him up he stopped supporting his head.

headlag

We had him checked out by a PT and there was concern.  In short…babies aren’t supposed to gain skills and lose them.  The doctor wanted him seen by neurology. One that specialized in muscle disease.  So we made an appointment in Phoenix to see a neuromuscular doctor.

The Saturday before the appointment I went in to get Caleb out of his crib and for the first time ever…his arms resisted.  His overall tone was different. He has supported his head every time since then.  His arms have only given out once since then.  We went back to the doc for his Well Baby Check and (before I said anything) the doc asked, “What happened?”

I said, “I know, right?!”

“He was a totally floppy baby! Now he’s not!” He said, “You are an enigma child!  You’re making me look like a liar!”

Ha! Tell ME about it!!!!

But he said it would be wise to go to Phoenix even though we were all certain it wasn’t neurological (that would only progress not be intermittent).  He thought it would be good to speak with such a specialist.

We did and I’m glad we did.  He said in about 1 min. that he was certain that Caleb didn’t have a neuromuscular disease.  In fact, he was super impressed with Caleb who was TOTALLY showing off for the doc and even implementing brand new skills!!

However, Caleb’s lab work was telling to this doctor and he said what we’ve heard before: Metabolic disorder. He knew more than we’ve heard before; was so confused as to why we were in his office and yet haven’t sat in the office of a metabolic doctor. He told us why the labs they have run in the past didn’t tell us what we needed to know.  He told us why an upcoming procedure was unnecessary and he ordered appropriate labs that will hopefully hone in on the specific metabolic disorder he has (if any).  He said he wouldn’t be surprised if the labs showed nothing since he is totally asymptomatic at this point but put in standing orders so that when/if Caleb becomes symptomatic again…we can have this test done immediately.

I will let you know what the new lab work says as soon as we hear…but based on Caleb alone…I’d say they’re going to look great!!

Image

xo

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One Comment on “Caleb Update #1,245,873”

  1. Heidi Hollenbach says:

    I am SO glad that you found a doc that is knowledgeable and is advocating for you!!!! And, it is absolutely amazing and wonderful that Caleb is using his muscles so well; here’s praying that he is as active as your other two :). I hope you can enjoy your family vacay; rest, relax, have fun!!!! :)Heidi


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