It's been strange not having to go to the cancer center at all.  Actually, it's been strange not going to Community North Hospital in a few months.  That place became our home away from home, but now that Dave no longer needs treatment and the kids' doctor appointments are mainly at Cincinnati it's been a bit surreal to drive by it and realize we do not need to go there.  It's nice, but surreal.  

Dave continues to do well.  He has gotten settled into his new management type of position at work and is enjoying the change in his career.  Since he doesn't have to go to the cancer center nearly as much he is finally able to devote himself more towards his career and family as he has wanted to do.  

However, the main reason for this update is to update you all in terms of the kids.  I know this blog originally started as a way to keep you updated on Dave's cancer journey but let's be real:  we've been dealing with several journeys all at the same time including the kids and their cerebral palsy diagnosis.  So, cp continues to impact our lives in many interesting ways, some great ways and some not so great ways.  We recently had to take Evan to Cincy to be evaluated for VPI (Velopharyngeal Incompetence) for which he does have mild to moderate VPI.  This means that due to his cerebral palsy his soft pallet is not strong enough to close when he is talking.  Typically we breath through our mouth and speak through our mouth with the exception of m, n, and I think q--those ones are done nasally through our nose.  Well, due to evan's weak muscle tone, his soft pallet is unable to close and block the air from going into his nose which results in nasal sounds and nasal air emissions.  It is partly why he is difficult to understand at times.  We were left with three choices on how to deal with it.  The first is major surgery to correct it--however both us and the medical team feel this is overkill since most people can understand Evan for the most part and we don't want to put him through surgery unless we need to.  The second option is that they can give him an injection in the back of his mouth that would help swell up the back to make it more easier for his soft pallet to close off the airway to the nose.  However, it would only be a temporary fix--it would help earlier in the day but as Evan fatigues as the day goes on it becomes harder for his soft pallet to close and so it would eventually wear off it's effectiveness as the day continues.  The third choice was wait and see.  We could just wait and see if it gets worse or better.  If it gets worse he can decide as a teenager to have the injection done to improve things.  They said they often have teenagers that want it done so they can be understood better and their breathing improves.  They explained that besides the sound of his voice the only negative effect from it is that Evan has to take more breaths to talk since alot of the air escapes through his nose instead of his mouth which is why Evan is always taking breaths in the middle of a sentence.  So, at this time Dave and I have decided we are just going to wait it out.  Hopefully, he will grow out of it and for now it doesn't seem to be impacting him too badly.  It does impact his ability to breath through his mouth some and it does impact his ability to be understood some but not enough for us to put him through an injection or surgery.  So we've decided to wait until he is a teenager where he can make the decision for himself.  

We've also have had issues with Evan and his SMOs (his ankle brace).  It has been amazing to watch how much more energy and how much further he can run with them on.  However, because he is being more active, he is now starting to have leg/knee pain like Abby does.  It is so hard to watch your kids be in pain and feel helpless to do anything to help them.  However, at the same time, it's been great to watch them both continue to grow stronger and be able to keep up with their peers a bit better than before.  We also recently bought Evan a tomato seat which is an adaptive seat he can use at the dining room table to be able to sit up straight and focus on eating his food.  We are excited about the opportunities this will bring and less battles at the table.  Furthermore, it's portable so when we travel to grandparents' home or other relative, friends homes we can bring it with  us where Evan will be able to eat better.  

For Abby, we recently did a neuropsych evaluation again with someone that specifically specializes in autism.  There the psychologist did see alot of the autism features and how Abby masks them.  Thankfully, Abby was um quite apparent in some of  her struggles and it was pretty obvious to the evaluator.  So, she said unless the test results show differently which based on first glance didn't look like they would she would be diagnosing Abby with autism.  Guys-this is a big deal.  Do I want my daughter diagnosed with autism?  Of course not, but at the same time, it puts a name to her experience AND we can finally get her the support she needs.  Abby has been looking for something to explain why she is the way she is (i.e. loves to sniff everyone and chew on everything and roll in the mud and play in the river embracing every bit of nature).  Abby seems to really identify strongly with the idea of being "autistic" and seems almost proud of it which is fine by me.  I want her to be confident in herself and I don't want her to be any other way.  We just need help with her transitioning from those sensory loves to the sensory hates without huge meltdowns that result in lots of hurt words being said and violent actions being taken.  We just need support in knowing how to best support her and raise her to be herself but to find peace in life too when things are not kosher with her sensory system.  

Abby was also finally approved for the state family support waiver and medicaid.  This means we can get accomodations for our home and extra support within our house.  We can also get her the adaptive car seat we've been needing due to her slouching and when she has meltdowns unbuckling her seatbelt.  Abby is a very intelligent girl and while alot of times that comes in handy sometimes it is a problem.  :)  So the idea of getting some extra support for us and Abby is very much welcomed.

Okay I am needing to go.  I get to volunteer today with the field trip at school.  How exciting!  But that is the latest update on us so far.  Love and peace to you all!