Wednesday, June 11, 2014

Little Luke Update

School is almost out for the summer, which means lots of appointments for Lukey.  We've tried to schedule all of them in the next three weeks before we head up to Canada.

This week week we had a follow-up EEG and appt with his neurologist.  She wanted to see if there were any changes since he has been on his new seizure meds.  Nothing changed! Our doctor said that is okay news.  Best scenario would have been if the EEG drastically improved, but she said worse case scenario would have been if the twitching had gotten worse.  So... We will take no change.  She increased his med dose and he has another appointment in 2 weeks.

He has also had a follow-up with his eye doctor.  He said everything still looks good, just delayed.  He still has ptosis (droopy eyelid) so has to start wearing an eye patch 1-2 hours per day.  James is pretty excited for his little brother to be a pirate!  He will need to wear this for 3 months and then have another follow-up.

Today we went over to St. Paul to see his genetics doctor.  He now weighs 10 lbs. 3 oz., so he's growing!!  She said there are usually 3 possible reasons for microcephaly (small head).  First, could be due to an invetro infection, didn't find.  Second, could be a chromosome abnormality, didn't find.  So lastly, they are looking at his genes and trying to find a possible syndrome.  They successfully drew blood today (yeah Children's) and are testing for 2 things: different microcephaly studies and a breakage study.  She showed me the cost being billed to our insurance, $5000!!!  So thankful for health insurance.  We will find out results probably sometime in August.

I still find myself on the edge of doing okay and having tears.  I think the grieving process will take longer than I envisioned.  90% of the time, I'm okay. It's the other 10% that gets to me.  I experience it when I am stressed or visiting the doctor.  Or when I explain our experience to someone new.  It is at these times that emotions come flooding back and the tears start.  I have come to terms that this OKAY and that I don't have to feel guilty about being emotional.  It shows that I am only human, and this is normal.  It also allows me to draw my strength from Him and realize that I cannot do it on my own.  I am also constantly reminded at how incredibly blessed I am.  My children, all three of them are perfect and such gifts from Him.  In this world, we are surrounded by many people that are not able to have children.  It puts everything into perspective and I realize that this roller coaster it have been on, will allow me to have more humility, more compassion, and more understanding to people and their circumstances.

Thank you again for all your prayers!! As of today, I am officially on summer break!! Yeah for mommy days!

Love, the MN Juliens