Tuesday, February 23, 2016

Update on Little Man

Wanted to give everyone a quick update on Bennett…we spoke with his nuerologist and she agrees that additional monitoring of his petit mal seizures is in order, so we will be having a 48 our EEG at TCH March 14th-17th….that will be all kinds of fun… :/ his will be hooked up to electrodes the whole time and I will have to sit there with him and press a button everytime he has a seizure. Nice way to spend our Spring Break… L But at least we may get some answers now.

Bennett starts Kindergarten at Peggy Wilson Elementary next Monday…I’m super nervous but excited as well!!! Our next MRI is set for the 31st…I hate having scan anxiety. Big changes for us. Let’s do this! Tata for now… -Mommy Nester

Thursday, February 18, 2016

February 18, 2016

So we’ve had a pretty busy 2 weeks, so here is a quick update for everyone.

We have made the decision, and Bennett will be transitioning over to the CyFair Public School District starting February 29th. He has gone through evaluations there with their Special Education Program Leaders and we will get the status on his approval for that blanket on March 22nd. He is going to be joining Ms. Manton’s Kindergarten Class. Let me just being by saying Mommy is FREAKING out. This is a HUGE change for all of us. Yes, he will be getting all of the support educationally and cognitively that he needs to help with his medical conditions and autism, but he will be moving into new territory. No more naps if he is tired (right now he gets them b/c of how hard the radiation was on his body even now), no potty help, no lunch help, its all big boy stuff…I’m scared he isn’t ready…I’m scared I’M not ready for this…but…here we go regardless. Jumping feet first, eyes closed. Wish us luck.

Bennett had to go to the hospital 2 weeks ago for a virus…he’s feeling much better…we had his allergy evaluation earlier this week, and I mentioned this to her. I also mentioned that he has been having many more of the petit mal seizures (also called absence seizures). He experienced 5 alone in a 2 hour time frame. His allergist wonders if these seizures are triggering something in his brain that regulates his body temperature, and that in turn activates his body’s immune system to kick in and fight, triggering a rash. This literally was one of the most insightful hypothesis’ I’ve heard out of TCH in a while. Well done Dr. Anvari. It could be, so we are watching and will report back on that soon.

I’m sure I’ll be posting next week his “First Day of Kindergarten” pics…so stay tuned. Hugs- Mommy Nester

Starting out in 2016

It's been a while since I posted on here, so I wanted to give everyone an update on how little man is doing. I've been so inundated with work and Bennett's Bears the past few months that my blogging has had to ride on the back of our bus....but I finally have a moment to update everyone.

His past MRI in December revealed that his tumor has shrunk by almost 45% since September, which means that the proton radiation really did the trick and is killing that tumor. We could not be more happy. He is enjoying spending time with friends, being in school and learning to be a normal little kid for once. I know that he will never officially be normal, but for us, this seems normal, so we take what we can get. Bennett met with his neuropsychologist in December and after a lengthy 2 day analysis they have diagnosed him with a mild case of Autism Spectrum Disorder. They recommend that we pull him from his Montessori school (where they focus on independent study) and move him into a public school setting where he can interact with other children and work on his social issues and be able to benefit the resources that the public special education forum has to offer.

To be honest I am terrified for him. I don't want him having a label of being "special ed" at such a young age and have it follow him throughout his educational journey, but I suppose I can't be picky. At least we found out now and are taking action. I will update you all as we get more information on it and where they plan to place him.

Until then he is a happy little boy, he had a wonderful Christmas, Santa brought him lots of goodies, he rode the Polar Express with Papa Dick and Mimi and even got to help Mommy deliver a few bears this season to the sick children at the hospital.

As a family we have had a rough few weeks, but we are moving into 2016 with a new vision. Less drama and the people that come with it, time for us, and have joined Second Baptist Church and are going every Sunday now. We needed a change.

Lots of Love- Brande, Randy & Bennett