Saturday, March 23, 2013

Two Months Old!!

Time is going by so quickly and Nolan is growing!!  We had his doctor's appointment and shots on Thursday.  Nolan did great and has not run any fever which is a blessing.  Fever decreases the seizure threshold, so we have been watching him closely.  He is following his growth curve perfectly.  He is staying just under the 50th percentile for weight, he weighed in at 11.9 #.  I don't think there is much hope for his height with the genes in our families!!!  He started in the 15th percentile for height and that is where he is staying at 22.2 inches.  Here is our smiling little boy before the shots were given!


Here is Nolan's one and two month pics. 

 Nolan had a great week this past week!  He went to his first birthday party for his cousins, Carter and Campbell.  He was able to meet his great Granny Grace and Gramps as well.  Nolan is very blessed by all the family who loves him so much.  Here a picture taken in Janer's hospital room with his aunts Robyn and Katie and I. 

Nolan's strength continues to improve.  His neck control is noticeably improved and he is easily able to turn his head side to side during tummy time.  He is starting to track with his eyes as well as grab tightly to things.  He is batting his hands at toys and is so much fun to watch!  We are loving every second with this sweet little boy!

Monday, March 11, 2013

7 weeks old

We have had a wonderful week!  Thankfully we have had no seizures to report and our little guy is doing great! He is seven weeks old today and his personality is really coming out!  His first purposeful smile was two weeks ago, but we are starting to see more and more of them.  Nolan would really prefer to be on his back during tummy time, but his neck strength is improving and he is pulling up and rotating his head.  His favorite activities right now including watching facial expressions and attempting to mimic, watching his baby Einstein music and light machine, and looking up at ceilings and beams.  We are having so much fun with him right now!

Monday, March 4, 2013

We have a praise!

We have been seizure free at the Thompson house since Nolan started his new medication on Friday! We are able to relax a little in the fact that things appear to be improving!  Little Nolan is 6 weeks old today, and it is exactly 2 weeks since we were admitted to OU.  It feels like it was an eternity ago!!  God has been at work and Nolan continues to be lifted up in prayer by so many.  We are so grateful to all of our prayer warriors as Jeff and I have felt embraced and comforted by the power of all the prayers.  I have been reminded in the midst of this storm to slow down and enjoy all of life's precious moments.  Nolan is our special gift from God and we could not imagine life without him.

Saturday, March 2, 2013

Making Progress

Nolan had been seizure free since Monday, but started having them again starting Thursday morning at 6:00 am.  The history of his seizures is that they usually come in clusters, so were expecting more to come.  Luckily at our doctors appointment on Thursday mid-morning Dr. Norman was able to talk us through some expectations.  She told us that the medication that Nolan was on was NOT her "go to" for his particular diagnosis.  She uses a different medication and has had much success on similar cases on stopping the seizures completely.  When Nolan was at OU they started Keppra, so that is what Nolan had been on since.  Dr. Norman has tried increasing the dose of the med as well as the frequency given.  Nolan is now on the upper end of the maximum dosage of Keppra.  If Nolan was to continue to have seizures she wanted to switch him to Trileptal.  In the meantime we would get a Keppra level to see if he might be metabolizing it quicker than expected.  Anticipating the possibility of switching his medication, his Auntie Em ordered the Tripleptal to make sure it was available on short notice if needed.  The brand name seizure medications we have learned are not the easiest to find.  Thank goodness for having a pharmacist in the family! He had another seizure that afternoon and then two more early Friday morning.  Dr. Norman was notified and the new medication was started on Friday.  We are praying and have faith that this medication is the answer to stopping his seizing.

Jeff and I have had lots of questions concerning what the seizures are doing to Nolan's body.  The first questions I asked the pediatric neurologist at OU, as well as the answers received are as follows: Are the seizures hurting Nolan? No, they may scare him but do not hurt him.  Luckily Nolan does not hold his breath during the events (Praise God).  Are the seizure events affecting his cognitive function? No, they only start to affect brain activity in a negative way if they start lasting 30-45 minutes in length (the longest one Nolan has had was about 3 min and 30 sec). Will this affect his IQ? Absolutely not.  Jeff and I are convinced that the reason Nolan is having the seizures is because he is such a genius that his brain is growing faster than normal and the neurons in his brain can't keep up and keep misfiring!

Yesterday was a bad day for Nolan.  He had multiple seizures and was worn out from all the activity.  We napped all afternoon and sweet boy just wanted to be held.  Good news..... with the new medication on board Nolan has not had a seizure since yesterday afternoon!!  We all had a good night last night and we are hoping for a good day!!  Nolan started to smile back this week which is so fun to see.  His Gran also taught him how to mimic sticking out his tongue which is his new favorite thing to do.  He loves to look at faces and see different expressions.  He is such a blessing to us.  Here is a picture we captured this week.