No Botox This Time

Yesterday, Hayden has his appointment with his physiatrist in St. Paul, MN. With the roads in northern Iowa as bad as they were, we were lucky to get there at all.  Had we known the roads were going to be that bad, we wouldn't have gone.  Luckily, the roads in Minnesota were fine, so we were only 10 minutes late.  We updated Dr. Desphande on Hayden's progress since the change in food and advised her that Hayden's tone appeared to be increasing in his legs and his left ankle is more turned in.  She agreed.  Unfortunately, this means that he would require more Botox.  The amount he would need now to have any effect would be a toxic dose for him.  She suggested that we try Phenol, which is essentially alcohol, in the large muscle groups (hamstrings and inguenal) and still use Botox in the smaller muscle groups (calves and ankles).  Since Phenol has to be dripped directly onto the nerve, it has to be done in the operating room under anesthesia.  It burns everywhere is touches, so it is essential that he not move durning the proceedure at all.  The good things about Phenol are that it usually lasts longer than Botox and is much cheaper.  It is possible that Hayden may experience some contstant tingling in his legs that may last for weeks.  If that happens, there is medication that he can have to manage the discomfort.  Since OR time is needed, we will have to come back for treatment.  Her earliest OR time is the 3rd Friday of March, so we are expecting to head back up there then.  Hayden had an x-ray taken of his hips to make sure that they still look okay. 

The ride home was a little better.  I don't even remember how many cars we saw in ditches on the way home.  We were just thankful to have had a safe trip.  God is definitely watching over us.