A really good day...

I had almost forgotten what it felt like to have a really good day...until today.

Today was busy, but what day isn't busy around here?  We had an opthamologist appointment scheduled for the morning, as well as an impromptu neurologist appointment - the follow up to yesterday's EEG.  Prior to leaving the house I decided to finally take the bull by the horns and call the director of Babies Can't Wait to discuss our miserable experience with them to date.  Much to my surprise, the director of the program was extremely helpful and is going to get a new service coordinator placed in our house.  She spoke with me for probably 30 minutes and was extraordinarily patient in listening to my concerns and helping to develop ways to address them.  Assuming there is good follow through, I feel like we might be able to get our early intervention services back on track.

Our opthamology appointment was productive.  Alli's vision has improved since our last visit.  We will continue to monitor her vision and see the doctor again in 3 months.  He noted that she had some intermittent nystagmus while we were talking.  Nystagmus can be common in children with Down Syndrome, but it can be difficult to determine its true source.  Given the damage to Alli's brain, time will potentially tell whether the nystagmus is a result of the Down Syndrome or the brain damage.

Now for the news we have all been waiting for!!  Alli's EEG!  We had a great experience at the neurologist yesterday for the EEG.  This test (despite being minimally invasive) has upset Alli in the past, mostly due to the process of attaching the leeds to her head.  Our EEG tech yesterday was amazing.  She had a few tricks for making that process more comfortable for Alli and they worked like a charm.  I was so grateful.  I met with the neurologist today.  Her EEG was much improved since her last scan in February.  He feels that the hypsarrhythmia has resolved, however, her scan still shows intermittent seizure and other abnormal activity.  I feel as though my prayers to Padre Pio have been heard and answered.  I will continue the novena as I find it helps to keep things in perspective right now.  So, for now, it seems the infantile spasms are again at bay.  We will continue to monitor her from a neurological perspective due to the other abnormal activity.  The neurologist feels that there is a possibility that that can improve over time, so we will pray that that is the case and take it one day at a time.

Both girls seem to be battling some chest congestion.  It doesn't seem to be upsetting them too much, so we'll keep tabs on that for the time being.  In the meantime, we are looking forward to the arrival of my mom and dad and Aunt JoAnne this weekend.

Thank you so much for all of your prayers this week.  They really do help!