December Update

Every time the holidays roll around it feels like a giant sprint to Christmas.  There have been so many things going on around here, it looks a bit like a three ring circus.  Since it’s Christmas Sam’s schedule always ramps up.  That is just part of his job and we expect it every year.  This year our Christmas program is actually done in a variety of “homes” in our church body.  It has been so fun to go to a person’s house and eat Christmas cookies and do a carol sing-a-long.  There are three music groups going to 9 homes total, so each group performs 3 times.  It is so much fun and a great way to fellowship and interact with people from church.  It really makes our big church feel a little bit smaller this way.  There is also our drama team performing 3 different sketches during the Advent  season on Sunday mornings (and if you didn’t know it, we double cast every drama piece now, so that both Sunday locations can have live drama).  And the choir is preparing for Christmas Eve services.  So many wonderful ways to celebrate Christ’s birth.  So that has kept us busy, but it is such a wonderful way to be busy!

Silas overall has been making progress but we’ve had lots of ups and downs. He has had a urinary tract infection, is teething molars, and had the stomach flu over the last number of weeks.  All of these things can cause seizures to increase (sickness in general causes more seizures).  We especially noticed it with the urinary tract infection but did not know what was wrong with him.  So I took him in to see the doctor and they ran labs and a urinalysis and that’s when we found out.  As soon as he started on the antibiotic  his seizures dropped dramatically.  It made me realize how much any infection impacts his seizures.

So is the diet helping?  Yes, we think so, although we have not gained seizure freedom on it.  I do think it has reduced his seizures (when he is healthy) and made them weaker.  He has had some really good days!  We are thankful for that!  Unfortunately it is not uncommon for the diet to mess up a few of the things on his labs and we are now in the process of “tweaking” things for a second time to try to get normal lab results from his blood draw.  Last time they tweaked things (to help a GI issue and his bicarb level on his labs) it fixed one problem but made his seizures worse for  a few days.  Now we are tweaking again (due to another lab that is mildly elevated and needs to come down), I am worried not only will it make his seizures worse but that we will not have as good of seizure control.  They are basically changing his ratio of fats to carbs, which is the whole mechanism for controlling the seizures in the first place.  They are adjusting the ratio so it is not as strict.  I know it needs to be done to get his labs normal again, but I feel like we were finally getting somewhere.    It is really a slow process of trial and error.

The new drug is also going well.  I have had a bit of problem administering it.  It is a liquid drug and the base for the drug is sesame oil.  If you know anything about oil, it coats things.  So when I  put it down his g-tube it coats the tube and hardly any gets to his belly.  After calling around, it was recommended that I skip going through the extension tube and insert the medicine syringe directly in the button in his belly.  This has made it far easier to administer, but now I am having problems with the button leaking when I do that.  Even though I give my son a half dozen other meds and have no problems with those, the experimental drug has been the hardest to administer.  But is it working? Overall, he is moving more and is stronger.  I can tell when I do physical therapy with him that he is doing more of the work.  Only time will tell if that’s the drug.

However, his sleeping patterns have been all over the place, which I largely believe is due to his molars.  Some days he takes an hour nap all day long and then the next day he sleeps for 4 hours straight.  One night he’ll fall asleep at 6:30 pm for bedtime and the next night he’ll be up until 11 pm.  I know that some kids are just like this, but I don’t believe this is Silas’s personality.  I think when he has any issues (teething, getting sick) it affects his sleep.  In the case of molars I think it is making it hard for him to sleep.  Then when he doesn’t get his sleep one day, he is exhausted the next day and makes up for it.  We have been in this pattern the last number of weeks.  So although I’m hopeful the drug is working, I also have a hard time telling what is normal these days.

I also have to say that I am thankful for your prayers and your gifts of concern and love for our family.  I really think that people are not only praying for my son, but also for me.  Although I have many reasons to be discouraged and sometimes am, I have also had a number of really good days where the Lord has reminded me of his promises and I feel hopeful  about that day.  I know the days of discouragement will still come, but it is refreshing to have  days where the burdens of life are not so heavy. The truth is, I cannot explain why.  I just think that Lord is hearing the prayers of many and giving me something extra to help me through my day. For that, I am thankful.

 

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