Monday, May 20, 2013

11 Months

I can't believe that the twins are 11 months already.  Boy does time fly by!  Joy is crawling everywhere and loves to get into everything.  She is standing and sometimes stands all by herself.  I have no doubt that she will be walking soon.  Joy is a perfect name for her, always smiling and laughing.

Shane is doing great with his physical therapy and is getting stronger every week.  He is rolling over but still hates tummy time.  He can sit by himself for a minute or so before falling over.  I am so proud of his progress.

Last month Shane saw the ENT doctor because of his increased breathing noise.  They took some xrays and found that he had a marked narrowing of his trachea.  The narrowing looked floppy so they believe that he will outgrow it but if he needs to be sedated again we need to let the doctors know so they can use a smaller tube.

When Shane had his MRI done a few months ago, they also found that he has a Chiari malformation of the brain which means which parts of his brain protrudes through the opening in the base of the skull into the spinal column.



http://kidshealth.org/parent/medical/brain/chiari.html# is a good site to learn more


Some signs of Chiari malformation in babies include:

  • irritability when being fed
  • excessive drooling
  • weak cry
  • trouble gaining weight
  • arm weakness
  • developmental delays
  • sleep apnea 
Now since we already know he has a narrow trachea and that he is at risk for having sleep apnea, we are doing a sleep study later this month. At his 10 month check up we found that his head had grown a lot, going from the 65th percentile to the 95th percentile.  Because of this, he is having a repeat MRI done tomorrow to see if he needs a shunt so please keep us in your prayers.  Luckily he is not being sedated for this MRI.  They are doing a "quick scan" so it should only take about 10-15 minutes to do.  The other good thing is that we have an appt with the neurosurgeon later that morning so we know right away what they found in the MRI.  no waiting.  I just want to thank you all for your prayers as we continue on this journey.  It has been a long road and  we continue to see  God's faithfulness in every step!



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