A Different Boat

As we strive to help Wesley grow, I still find his feedings to be a huge source of stress.  It seems to be a constant dance of steps forwards and backwards as he improves for short periods but then regresses.  He has gained little to no weight over the past year.  We've made intermittent progress in terms of tolerating textures and even some chewing of soft foods but as his willingness to eat has increased, his weight gain has stalled. Our best theory is eating is so much work for him, he burns a lot of calories in the process.  So, we've switched his overnight feeds to higher caloric density and have tried to push as much as we can during the day without forcing him so much he is uncomfortable and stops eating again.  But despite our best efforts, he's still hovering right at 28 lbs.  So, our newest plan (now that medicaid will finally cover it) is to try a premade, nutritionally complete blend of foods in place of his formula.  After 4 nights on Liq...

Just like any other field, the special needs world has fads/trends that get everyone excited.  About a year ago, the big talk filling my facebook newsfeed was the Upsee .  Essentially, it is a harness used to attach a child who is unable to walk to an adult and provides the child the feeling of walking while the adult walks.  Sounds like a great idea!  Well it is a great idea but one with a $500 price tag (as most all special needs equipment is exorbitantly overpriced).  So although it seemed like something Wes might like, he has fooled us before and hated things we've thought would be big hits.  So, we spent the last year debating whether the chance that he might love it and it might be great for him was worth the $500.  That was until he got on this amazing Medicaid waiver program that covers many of the "extras" not covered by insurance (ie. music therapy, horseback riding therapy, home modifications, etc.).  We discovered that this waiver will...

We received Wesley's MRI and PET scan results last week.  Although we really like his epileptologist, he speaks with a very heavy accent.  After speaking with him, and still feeling confused as to our plan and the results, I was able to get his neurologist we've been seeing since he was 2 months old to decipher for me.  We really love her and are just amazed at how much she cares for Wesley and our whole family.   So here are a few snapshots from his scans (hint, the black areas are fluid where there should be brain matter).  It's disheartening to say the least although it's really nothing we didn't know already.  The PET scan did give us some new information.  The MRI looks at the anatomy of the brain while the PET scan gives some information about the functioning of the brain.  Anatomically, the left side of his brain shows more damage.  Unfortunately, functionally the right side is showing more abnormalities.  My take away... it...