Monday, January 19, 2009

Busy day...

Today we took care of Missy (Mema's doggy), had therapy, washed the car, paid bills, made lots of phone calls, did the laundry, took a bath, went to the doctors to get my first Synagis shot, played with Jack, Will and Garrett and picked up Mema from the hospital.  It was a busy day!

Miss you and love you all!

Wednesday, January 14, 2009

Here's what we know...

During ACTH Nicolas started having high blood pressure as a side effect...and began taking a diuretic for that...that medication's side effect caused his potassium to go low so we gave him potassium supplements.  Well...Nicolas's blood pressure was great yesterday so his doctor took him off both medications!  In one week we will go to Parkview North to have lab work and blood pressure checked to make sure he is adjusting without the medications.  

As for the myclonic seizures and infantile spasms.  Both are difficult to treat and because the doctors are concerned about mitochondrial diseases we are limited to what medications we can use to treat the seizures.  So far we are using Topamax to treat his seizures and Valium to treat his seizures and to relax his muscles.  Because we are still seeing some seizure activity and because he has had a tough time relaxing recently his doctor increased the dose of both medications.  Hopefully he will be more comfortable.

As for the MRI...The brain looked fine and what they had seen through use of spectroscopy looked good...However Nicolas has a thinning of the white matter around the brain.  When you compare his MRI's the white matter hasn't changed.  The white matter affects motor activity and the peripheral nervous system.  What does this mean? explains why he has developmental delays.  Can the white matter grow and get better?  Will his motors skills improve even if the white matter doesn't grow?  There continues to be many questions they just don't have answers to.  We find pieces of the puzzle but the puzzle isn't fitting together yet.  What they tell us is that many children develop many different ways.  They cannot predict how Nicolas will develop.  Even if we have a diagnosis at this point it wouldn't mean that they could give us developmental expectations for the future.  So we will continue to live day by day and pray.   Dr. Walsh and Dr. Hainline both agree that the next step is a muscle biopsy.  So at this point we will have to decide when and where that will happen with the assistance of Dr. Walsh and Dr. Hainline.  We met with Dr. Walsh mid March.

Our next scheduled appointment with Neurology isn't until July.  If for any reason we need to see them sooner we can bump up the appointment.  So our future trips to Riley will be one in March (to see 3 doctors), one in June (to see Hainline), and one in July (Neurology).  We assume the biopsy will take place this Spring.  It is nice to have more space between visits!  

Thank you for your continued prayers!

Tuesday, January 13, 2009

Today's Riley Visit...

Nicolas and I will be leaving at 11 for Riley.  That will give us plenty of time due to weather conditions.  I'm sure I will hear about the MRI today.  We will not know the blood test results until the first or second week of February.  I will fill you in soon.  Until then this is what we do know...  We will start giving Nicolas Immunizations again this month...He is currently caught up to two months.  And we were approved recently by insurance for Nicolas to receive Synagis shots.  Synagis is a medication that helps protect high risk babies from severe RSV (Respiratory syncytial virus).  It is based on weight so Nicolas will receive one Synagis shot for the next 4 months.  Pray for a safe trip!