You may not have time for this one, but...

The Short Version:

Oliver is still having the same kind of seizures as before the surgery. His behavioral issues are most likely neurological and will not respond easily to treatment. A second surgery is not likely right now. His skull is healing nicely.

The Long Version:

Currently, we feel rather unsettled about the state of things with Oliver. The answers we got in Boston weren't what we had hoped for. It appears we have even more to accept and adjust to in regards to life with a special needs child.

We met with Dr. Duhaime (our pediatric neurosurgeon) on Friday morning. Thankfully, Oliver's skull is healing well. This is wonderful news. It appears that another brain surgery will not be considered in the near future, as we are still sorting out the full effects of the original surgery. In Dr. Duhaime's office, we explained all of Oliver's concerning behaviors and his current seizure activity. She was blunt with us, and suggested that by removing the left temporal lobe (in an effort to reduce seizures) we may have inadvertently made Oliver's hyperoral/behavioral issues worse. Sigh. There are known cases of this post surgery affect, particularly when dealing with the temporal lobe. It is extremly rare, but it is documented in the medical literature. Let me just stop here and acknowledge that as I type this I feel sick to my stomach.

We thought the brain surgery might address the seizures, and therefore remedy or help the behaviors. It looks like we did little for the seizures and have likely exacerbated the behaviors. We knew the risks going into it, and we are still thankful that the worst outcomes are not a reality for us. The brain is complicated and so little is understood about it.

We feel conflicted, to say the least. We made the best decision that we could based on the situation (so did the entire team). We aren't going to beat ourselves up about it, but I will be sad for a while. Andrew processes these things so differently...he is a “glass half full” personality. It will take me time to accept this new picture that has been painted for us. Disappointment after disappointment is exhausting.

On the positive side, Dr. Duhaime seemed to have some insight into Oliver's unusual cluster of behaviors. There have been so many diagnoses thrown around: ADHD, PTSD, Autism Spectrum Disorder, Sensory Processing Disorder, Auditory Processing Disorder. I think I have read at least one book on each one. Too bad I can't return them all! Each of these diagnoses has elements of Oliver's issues, but none of them were the “ah-ha” moment where they all came together until now. Sadly, it will be very difficult to treat. Because of how young Oliver is, a full diagnosis isn't usually made until 4-5 years old at the earliest, but we think we are beginning to grasp the depth of his issues.

Dr. Newberry (the psychiatrist) was a straight shooter. He looked to be in his early forties, with a very trendy hair-do. During our meeting, Oliver was about 80% on the wildness/behavior scale. We think he got a decent snapshot of the challenges Oliver faces deach day. Newberry was not touchy feely, and we wouldn't say imparting hope was his strong suit. That being said, we didn't dislike him.

His advice was to get even more help (!) with Oliver. He kept saying “many hands make light work”, and we need to “view this as a marathon”. He didn't have any different ideas from our local psychiatrist as far as medications. Using psychiatric meds for kids this young is very rare, and we do not want to compound his problems by “over-medicating” him. There is still so much unknown about development, and the way little bodies may be affected by these very big drugs. We plan to keep tinkering with the Clonidine, and if we have to do so, introduce Risperdal (which is very potent drug for such a little boy). Dr. Newberry said at least two times that “profound behavioral disturbances” like Oliver's are very difficult to treat. The best thing to do is to create an infrastructure to cope. He recommended ABA (which we know very little about) as a behavioral regimen we could try with Oliver. It was developed for children with autism and is very rigid. We'll tackle looking into that as soon as we can. Dr. Newberry, along with Dr. Thiele and Dr. Duhaime thought Oliver is going to need more individualized attention at preschool. After last Friday's hellatious day there, the preschool teachers and administration are in agreement. We won't bore you with that sob story right now, but suffice it to say that Oliver needs more one-on-one attention.

It is clear that Oliver's hyperoral issues are mostly neurological, meaning they are hard wired into his brain. This means it is unlikely we will find a complete fix (short of a miracle, which we are still praying for). Did you catch the weight of that sentence? That is why we feel a bit beat up emotionally. We suppose when the brightest minds in medical science say these things, it makes sense that we feel like we are staggering mentally and emotionally. It was explained to us this way; he has an overwhleming desire to put things in his mouth and constantly ping-pong between stimuli, and these are very "deep rooted impulses that traditionally do not respond well to treatement”.

All of this comes on the heels of Oliver's IEP tomorrow. This meeting is VERY important. This is when the school system decides how much services Oliver can receive. The level of support we are going to ask for is not often granted (especially with budgets so tight these days), so would you pray that we would find favor and not have to fight for this? Would you pray that the opinions of our doctors, Oliver's teachers, and his occupational therapist will be heard and then acted upon?

Reading this, we are sure you feel a bit down right now too, but there is hope. There are drugs we haven't tried yet, diet options (God help us!) and hormones and steroids. It isn't that we are at the end of our options. It is just that we did something so drastic in having the surgery, and it seems to have made things worse for us.

We couldn't walk this path without you. It really takes a village, or in our case, a small army :) We love you all and hope the final week leading up to Christmas is rich in meaning and points you to a Hope that never fails. That is what we are going to try to set our hearts upon. The disappointment and the conflicted emotions will remain, but it is a season to be reminded that miracles are real and that our God loved us enough to bring Light into the darkness.