Good News, Bad News

Do you want the good news or the bad news first?

 

Good news:

Wesley has graduated from wearing his helmet during the day! He's on nighttime only helmet wearing for the next month and then will hopefully graduate all together. It's so nice to have his sweet little head to rub and kiss again. He seems happy to have his head free and his head control seems much better now that the weight of the helmet is off. I'm glad he won't have to wear it all summer in the heat and get all sweaty and smelly. His head looks wonderful by the way! The front is definitely still pointy (although not as bad) but the back is actually symmetrical. I don't plan on giving him a buzz cut anytime soon because his head is still kinda lumpy, but it doesn't look like a triangle from above anymore! When he officially graduates I'll post sone before and after shots.

 

Bad news:

In the past week, Wesley's physical therapist and his ophthalmologist both, without any prompting on my part, asked if Wesley was having seizures. Needless to say, that struck fear in this mom's heart and resulted in two somewhat panicked calls to neurology. After the second call, they decided he should be monitored for an extended EEG to look for seizure activity. He's had 3 short EEGs in the past (2 in the NICU and one at Children's) which all were "abnormal" but didn't show any seizure activity. He was on seizure medications from birth until 4 months for suspected seizures but I asked he be taken off since they are heavy hitting medications with severe side effects for only a suspicion of seizures. Since his EEGs were abnormal and he has such significant brain damage, he is considered always at risk for developing seizures.

Seizures are incredibly frightening. Up until this point all of Wesley's issues are results of his traumatic birth so there is little potential for things to get worse. Seizures throw a whole new level into the mix because they can, and often do, cause further brain damage. So, here we are, staying overnight in the hospital for the first time since we left the NICU. We feel incredibly blessed that this is our first overnight stay compared to many, many parents who spend countless nights sleeping in crib-side recliners. I am mostly praying that we get definitive answers. Of course I desperately want him to not be having seizures, but the maybes are crazy- making. So I want a no or a yes. They want him hooked up for at least 24 hours so we'll be here most of the day tomorrow too. Prayers are appreciated!

Wesley doesn't seem to mind all the electrodes and gauze on his head (the helmet was probably good training) and I think he likes not having to wear clothes! We've had team after team of doctors come in all day asking all the same questions and examining Wes over and over (the beauty of a teaching hospital). Wes finally fell asleep around 9:30. So far we haven't noticed any seizure like activity but there is a camera and monitors on him all the time so if there is anything to catch they should see it.