Saturday, March 19, 2011

Counting Blessings

By the time we got home from the hospital last weekend, Will was pretty sick and had lost almost 3 pounds...which, when you consider he only weighs about 23 pounds to begin with, that is a lot!  Of course, soon after we got home, he was smiling and acting significantly better.  We aren't sure if he had a virus, or if he was just extremely stressed by life in a hospital.  Either way, he is back to normal, and we are going to be admitted again on Monday for approximately 3 days.  Let's hope our third try will be the charm for starting ACTH.  There is a large part of us that wonders why we want to do this, as the side effects and extreme risks of ACTH are terrifying.  Don't Google it.

We have had a lot of ups and downs this week, although that is starting to become par for the course around here.  Will continues to have an average of 5-6 clusters of seizures per day.  Some days are better than others.  This morning he had one in the bathtub, and although obviously we would never leave a 20 month old unattended in the tub with or without IS, it was pretty scary to watch his head plunge forward into the water.

As expected, the Keppra has done nothing to lessen Will's seizures, and Will's doctors aren't very optimistic that the ACTH will work either.  We find ourselves already trying to evaluate the next steps, even though we haven't even started this round of treatment yet.  We met with a pediatric opthalmologist on Tuesday, who explained to us the very real risks to Will's vision from Vigabatrin (the next drug option if ACTH fails) as well as from brain surgery because of the location of the optical nerve.  There are no easy solutions here, and the options we are given are forcing us to make choices between the lesser of 2 evils.  We simply don't have an option that isn't without significant risk, although when given the choice between potential damage to Will's vision (or possible brain atrophy from ACTH) compared to the strong likelihood of severe mental retardation if we can't get the seizures under control, the answer becomes pretty clear.  We have no choice but to do everything possible to stop the seizures. When we first read about so many of the treatment options for IS, especially ACTH, our initial reaction was "no, way, not our child", but as we come to grips with the seriousness of Will's condition, seemingly impossible choices become easier to make than you might think.

We can honestly say that we are hanging on by an absolute thread, but somehow we are still holding it together despite it all.  Life keeps going whether you feel like you want to continue on the ride or not...our children need us to maintain a normal, happy life for them, we have jobs that demand our attention and bills to pay.  Sometimes we amaze ourselves by talking to someone about Will's condition all matter-of-factly as if we are completely in control. Other days, it is hard to even put one foot in front of the other. We met with a specialist in pediatric neurodevelopmental disabilities this week who is going to help coordinate Will's therapies, and she said "This is your personal tsunami" - she clearly understood what we are going through.

Will wanted to type this blog update himself
Of course, we know things could be so much worse.  Spending a few days in a pediatric hospital makes you intensely aware of this.  We are blessed in so many ways.  We know we have said this before, but since the beginning of all of this, we have been absolutely blown away by the amazing generosity of our family and friends.  We have the most amazing friends and family!  Our list of thank you notes to be written has gotten overwhelming, and we are not sure that we are going to get to all of them in light of everything.  To everyone who has dropped off a meal for us, or even just offered to make one, helped take care of Jack during Will's many appointments, helped get Jack to and from school, neighbors who have plowed our driveway, friends who treated me to a spa day, those who have given special treats and presents for the boys, the ladies prayer group who knitted blankets for Jack and Will, co-workers who chipped in and got us gift cards for parking and meals at the Clinic, friends who sent us a note or card or even just a text, those who called to say they care, friends and strangers who have said a prayer for Will, or even those who just followed along on our blog...we are so grateful.  We are truly blessed to have such an amazing support network with us on this journey.

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