Sunday, January 22, 2012

Head, shoulders, knees and toes...

Well, after a day of appointments there are some highs and lows. Mostly highs...
*orthopedic says he has no concerns about Mason's leg length discrepancy (very minor)

*ENT cleaned out his ears and says no infection (which is great because Mason has had a hard time sleeping/laying down without waking up screaming frequently so because the tube was blocked we wanted to make sure it wasn't an ear infection)

*ENT also did a scope test and learned that his nasal passages are well open (earlier there was concern that one side may be narrowed) and that his vocal cords function beautifully :) Best of all he said there was no sign of velopharyngeal insufficiency (where the flap that closes off his nose is weak, allowing food into his nose when eating) - he had some nasal reflux during his swallow study and gets congested after eating so we had taken a break from oral trials for a while.

*A urine amino acid test showed nothing that would suggest trouble breaking down protein. We were also waiting on these results before more oral trials since thickening his feeds caused him more pain/retching/feeding intolerance. The test was abnormal in that several of his amino acids were too low or absent, but no one seems to know what that might indicate :/ We will discuss this with his GI dr. and dietician. As long as he does not continue getting congested following oral trials we can probably resume them.

The tough news was in neurosurgery. And it might not turn out to be tough news...just the possibility of it. They are concerned that Mason's head is misshapen from a condition called craniosynostosis, specifically scaphocephaly, I think (and/or possibly trigoncephaly?). He will get a CT of his skull on Feb 13 to see if any of the sutures in his skull have fused/hardened too early which could prevent his brain from growing, cause increased intracranial pressure, headaches, head banging, further developmental delay. We are praying this is not the case as this is no easy treatment (brain will have to google all that as I don't have the heart to write about it).

Makes me sick to consider, especially wondering about the pressure problem (Mason often rubs his head when upset but we always thought it meant he was sleepy. Sigh. And as we mentioned earlier, he cries worst in the middle of the night after laying down several hours (when pressure problems are the worst). We are hoping this is teething instead (the crying at night that has gone on several months now, and when we increase his feeds - when he is growing, if his head can't grow but his body is, that could be the source of his pain). Please pray that it will not hurt anything to wait several more weeks on this scan and that we would have clear direction on whether to try to make it for sooner.

Micah actually had a ridge in the middle of his forehead as a toddler which we discussed with his pediatrician but were just told it was "genetic" and he'd grow into his head (looks okay now, we think?) We knew Mason's head was flat in spots from being flat on his back or sides so much in NICU and sleeping, but that doesn't require treatment beyond frequent positioning changes (they think he's too big for a helmet for that). His plagiocephaly may also be part of his torticollis...(he has episodes of wanting to only look to the left). Until this week I did not know that could be a cause.

Here are some pics of why the dr thinks he may have this problem...

Here is a pic of craniosynostosis (sagittal synostosis--where the head becomes very narrow due to early fusion of the sagittal suture of the skull).
Here is what Mason's head looks like from the top - hard to see from all the hair, but it's pretty narrow instead of round... :(

 Here is a pic of metopic synostosis (trigoncephaly)
" Infant with metopic synostosis as seen from above. Note that the forehead has a keel shape. Courtesy S. Schneider, MD" Source:

Here are some pics of Mason's forehead...

metopic prominence
metopic prominence
Needless to say, please pray!! (By the way, as to the title of this post...Mason has been playing that game with us and when we ask him to show us his toes and knees, he lifts them up! When we ask for him to show us his mouth, he makes noise with it! Too cute!)

But you, LORD, are a shield around me, my glory, the One who lifts my head high.
Psalm 3:2-4


  1. I am a friend of your mom's. Just wanted you to know that I have been praying for Mason even before he was born. I look forward to your updates so that I know how to pray. Praying still...

  2. Wow, lots going on for you guys as well! It does seem like a never ending battle. We're praying for Mason! And we think of you all often.
    I can't believe he is standing up with just holding onto something! That is so great!


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