Welcome

Originally posted January 4th, 2021 -

With Covid restrictions everywhere on top of our family relocating to a new area, it has been a lonely and overwhelming year.  I thought this would be a good way to keep those of you who care about Jacob informed about his progress.  It doubles as a place for me to journal about our experiences in raising a profoundly disabled child.  Jacob is about to turn three and we are working to transition him to school-based services.  I am certainly learning a lot in that process!

Jacob's contractures in his legs have become quite painful for him and caused issues with his feet so that he cannot bear weight on them at all.  This happened quickly over the course of a few months, and unfortunately it took several more months to get him set up with custom AFOs for his feet and lower legs.  I have agreed to go ahead with botox injections into several of the muscles in his legs and we will do that as soon as insurance approves the procedure.  He will need those injections every three to six months from now on.  If they work well in his legs, we will probably do more in his arms.  They can also be used in his salivary glands to help control his secretions, but right now I am content to manage that with medication.

In November we were finally able to connect with the neurologist that I have been attempting to get for Jacob since the spring.  She impressed me immediately when she spent over an hour via video with me going in-depth into his case.  She also ordered new tests and extensive lab work that probably should have been done long ago.  Unfortunately the lab work did confirm that his tissues lack proper oxygen and that his kidneys are not filtering perfectly.  All to be expected with his brain trauma and also the medications he must take, but it's still tough to see. 

I have agreed to try a strict medical ketogenic diet with Jacob to see if it might make a difference in his seizure control.  He will be admitted for five days, they will do blood work and monitor his seizures daily while they tweak the diet.  When he goes home he will have a special formula with added ingredients that will have to be weighed and measured, and all of his medications will have to switch from liquids (which have added sugar) to pills that we crush and put through his tube.  While ketogenic diets have shown promise in epilepsy treatment, there really isn't much research with seizures caused by trauma, and I will admit that I am not hopeful that this diet will make any changes for him.  We have tried other things that have shown success with metabolic disorders that don't have any effect on him since his symptoms are caused by trauma.  But, I am willing to try anything that would give him even the slightest chance of improvement.

We are looking forward to starting up his home therapies again this week.  It is good for Jacob to have some structure in his days and one 45 minute therapy session will wear him out pretty good.  He likes feeding therapy and OT, but is usually unhappy with the work he is asked to do in PT, like lay on his tummy and try to lift up his head.