Blessings

You all know I struggle to post when things are going so well, because I fear that we will hit a downward spiral quickly. However, today is June 16th... 9 years ago my son almost left this earth. In hindsight the fact that we had a room full of nurses and four doctors in his room should have been scarier than it was at the time. When our ID doctor told us to go sleep he wasn't leaving the station outside Bub's door, we should have known. We were lucky, we really never grasp the gravity of it all at the time. I remember sending away the social working who wanted to get Ayden all signed up for his disability paperwork. I remember thinking -  My son? He is so small?(ok, young, lets face it Bubba was never a small baby) He will get better. Fast forward to 5 years ago, after driving ourselves to Cleveland (because neither of us were allowed in chopper that flew Bub there) we spent the whole night at his side only to see him crash in front of us again. Again, we watched and waited to see if he would stay with us. That time was tougher because we did know just how bad it could get.
Fast forward to today, there are still moments that can bring me to tears: holding babies, seeing his preschool mates doing amazing "normal" kid stuff, watching families with 9/10/11 year olds go on fun trips, or hearing the sound of Sam in the air or sirens on the road.
However, despite it all he is thriving, so enough of the sappy stuff!

As summer break has started we are hearing phrases(that we say) coming to life more often. One of my current favorites "Really Ayden?" I cannot count the number of times I utter that phrase. We saw Julia, his PT for 7+ years, yesterday and she said he was doing well. His shoulder is dropping again so perhaps taping again in his future, and for the first time ever she could not move his left foot. He was significantly struggling with his gait about 6-8 weeks ago and I tried to get in to see her then, but schedules didn't work. We scheduled another visit next week to see if his issue is a fluke, I am hoping so. I also now know how to navigate the system to insure she sees him when we need her to. In her words, when we call it is important and she wants to get us answers. We have some 3 days in a row mini intensive sets this summer as well. Her goal is to start working on running...funny thing is Ayden came outside yesterday yelling "I did it!" meaning he learned how to unlock the lock on our backdoor. Great! Just when I started to think I could relax! lol!
One thing I have been meaning to write about for quite sometime, like maybe a year or so is our church. We have been attending Stroh Church of Christ for about 7 years now. We used to be able to drop Bub at the nursery like normal parents and they even let him stay with the younger kids versus the preschool children because he seemed to do well with some toys and space, and he still needed to be near the diaper area. We were able to attend as a family together. Then things changed, Ayden changed in between the surgeries, procedures, medicine changes, and everything else, church just wasn't something he could do. So for many years it was just Nessa and I or if the kids were with gma, Justin and I could go together. About a year ago, our church reached out to us and asked how can we help. We worked together on a few things and now this is what church on Sunday morning looked like for us. We pull in about 9 AM and walk in a few minutes after that, but before we get to the worship center, there are already people pulling chairs from the wall and creating a row just for us in the back closest to the door, with space in front of us. This has been such a blessing! We have been able to attend church as a family again. Are there days that Bub is not up for the challenge, yes. On those days he stays home with daddy. This welcome happens every time we come, even when it was very crowded on Easter Sunday they made a spot for us. Last Sunday, Ayden was swearing before we even got to the sidewalk, he was off, and we questioned whether to go. We did, and he didn't want to settle at first, but then danced with Georgo(his Curious George) and continued to do so even when he should have been sitting down. We tried to get him to sit, and then a tap on my shoulder came. One of the men from the church who had watched Bub for a bit said, "If he wants to stand and have his time with the Lord, let him. He has a connection with God you will never understand, it is beyond you and me." Yep, a tear or two fell, but he was right.
After great visits with Julia in Fort Wayne I question why we live where we do, it is so hard to get Ayden what he needs, it always requires A LOT of driving and time. Sunday, I was reminded why we live where we live, because that church 5 minutes away, doesn't care that we come late, they don't care that he needs his space, they welcome us and they are apart of what makes where we live our home.
One more blessing, June 16th does not have to be a sad day anymore, our Nessa has chosen to be baptized today at camp. That little, not so little anymore, always finds a way to make things better. Now she is taking this ugly day and making it a day of blessings.
 He has a plan, we just need to trust in him.
Thank you for keeping our little family in your prayers and thoughts, we are doing well.
 The Hoffmans

Ayden is Amazing

I struggled with the title for this post, yet had to move on quickly because I am excited to share with EVERYONE our great news. So "Ayden is Amazing" works because quite frankly it is true, unfortunately we have found a few people in this world that never really understood that. Ayden had the chance to love school again, briefly this year. How did we know he loved school? He shared HIS work explaining how HE did it and what he had done. He did not fight with me to get on the bus, and did not seem to need to decompress from his day.  Unfortunately, that time expired and we needed to find a solution no matter what the cost.

 Ayden will be moving out of his current classroom and school and into a class at Meadowview Elementary for the 2017-2018 school year. We are beyond excited to start this new adventure; Ayden has had many good memories at Ryan Park, but needs a change. We met his new teacher today and he is great, I am literally smiling this whole time...you have no idea!! It will still be functional skills (that will not change), but the district wide focus on technology, virtual learning, etc. will not be a problem  as he will be in the Westview School district, and our school calendars more closely align too.
The cost...we will lose "Deb and Vic", his bus driver and monitor since he was 3 years old. These two ladies have been a blessing to our family in so many ways. They truly love and care for my boy, they even have their own jingle we sing almost every day or night.  I am not sure that taking the bus the first few mornings next fall will be easy, but I am hoping what he finds in his classroom will make him want to try again the next day. We were terrified about Camp Riley last summer and the boy that returned was different, older, more independent. Ayden is growing up and changing each day, I can't wait to see what this new adventure holds for him... Ayden is Amazing.
I'll post soon about our summer happenings, he has already been on several bike rides, the pool is ready for swimming(once the weather cooperates), Julia is on the calendar, and then Camp Riley will be upon us before we even know it.

Shunts Fail. It Happens.

So it happens. Shunts fail and that is a pain. Sometimes it scares the daylights out of us, and sometimes it is just another surgery. This time we knew there could be a problem and there was. The element of surprise didn't get the best of us. 

Finally relaxing today

Backing up to November for a moment, we took a trip to Washington. Ayden had never flown before, and flew 6x in a 3 day period. Along with a crazy sleep schedule and time change he did not travel well. As we were landing in Detroit, Ayden had a very long cluster of seizures like he used to have. Fortunately, within about a week he seemed to get better. However, we started to see breakthroughs over Christmas Break, they changed from every few days to daily, and then from once to a handful/day. Meds were adjusted a few weeks ago and it seems to help for about a week, but we came to WI this time knowing he was seizing daily. Our appt. yesterday was just a routine 6 month check, but we had an MRI planned for a good baseline with his new adjustable valve shunt(from Dec. 2015). I have never really been very good at understanding imaging, but even from across the room I could easily see the difference, it was hydrocephalus.

Our Superman

Today he was scheduled for ventricle endoscopy and then shunt replacement. A quick check of the shunt's valve proved that it was not working. With this obvious problem the neurosurgeon did not see a need to be more invasive and explore the ventricles. Less invasive means quicker recovery, but to insure that we have fixed the problem we will have new imaging in the morning to make sure that the shunt is working and the fluid is draining properly. It may or may not clear up by morning, but we should see progress. If he is happy with the images, then we should be discharged to head home tomorrow. We will take our time, past experience with revisions has taught us to be cautious. I cannot actually count the number of times Ayden has puked on I-80/I-90(both directions). We will have lots of clean clothes ready, and we will take lots of breaks. Hopefully, we will bring a happier, healthier Ayden home soon.
As always thank you for the prayers, they are always appreciated.