Category Archives: school

The School Journey Begins

Hey Friends! I know it’s been a long while but I felt like it was good to let the summer just kinda come and go without worrying about blogging…looks like it spilled into the fall. Whoops! Sorry about that. Anyhow, it was a good summer and the BIG thing coming up for both Nolan and Grant was…THE START OF KINDERGARTEN!

Nolan did really well finishing up pre-k at one of the local public schools: he had an amazing teacher and assistant and we’re so thankful for their loving patience with him and their ability to get the best out of Nolan. His obsession with the ABC’s has made him an amazingly-good reader, but there’s still a lot of things he needs to work on, mainly writing and cutting. More importantly, we had to meet with his new school (our actual neighborhood school) to review his IEP plan in regards to things like classroom socialization, physical therapy, occupational therapy, etc. The school was very gracious and accommodating and they even had a kindergarten teacher go to his pre-k class to hang out with him and evaluate him in action. She seemed to love Nolan (who wouldn’t?) and hoped she’d be his teacher. They planned to carry on all of the needed therapies there at the school. Nolan and Grant both did their kindergarten assessments in July and then it was just a matter of shopping for school supplies, school clothes, and all that fun stuff.

While Nolan has shown improved eating with his new feeding team, he’s still on the g-tube and we had to go over some feeding stuff with his school, so we requested a meeting to develop a 504 Plan. Again, the school was amazing and scheduled a meeting the Friday before school was supposed to start. His teacher (who was the one who evaluated him, yay!), the Assistant Principal, the School Nurse, and others were present and we were able to tell them why it’s so important for Nolan to remain hydrated AND why it’s important for him to get a good number of calories in his day. We talked about his heart and everything he’s been through and told them they’re a big part in helping him succeed at eating by mouth. We also talked about using the g-tube if he wasn’t drinking well and warned about the g-tube being accidentally pulled out. The plan was if he didn’t drink a certain amount by lunch then the rest in his cup would be given via the g-tube and the school nurse would show the teacher how to use it. I think that stressed out his teacher A LOT, and we did our best to calm her down and give her the confidence that all would be well…not to mention the school is literally across the street from our neighborhood, so my wife is super close if they need her. The plan was in place and then we spent the weekend prepping for the big first day!

I’m sure a lot of you reading this have either been nervous about the start of school with your heart kid or are getting nervous about school coming soon. Trust me, I was there too. I was always wondering whether this was the right school for him, whether he’d be safe, whether he’d behave, whether he’d fit in, etc., etc., etc. But the reality is this: we did everything we could have possibly done up to that point – we discussed all the issues with his school, including the IEP and 504 plan. We talked to his teacher and principal and made ourselves available for whatever. The next logical step was to walk up to the school and hand our little boy off to his teacher…

So the day finally came. Our little Nolan; the one who survived 3 open-heart surgeries, the one who required multiple attempts at chest closure, the one who endured so much therapy just to sit, stand and walk…Nolan had his first day of kindergarten:


I mean look at this kid! I was so proud of him AND Grant. This was their time to shine and to kick off an amazing school year. They had a step-down week for their first week, so they basically only went for one day, but it was an exciting day. We drove to the school, parked, and walked our boys in to their separate (for the sake of their poor teachers lol) classes. I gave Nolan a big hug, told him I was proud of him, and told him to have lots of fun. And then we walked away.

At first I was nervous, worried, excited, anxious, all of that; but it eventually went away. I took the day off from work, and all the kids were at school and everything was quiet…Awesome! We went out for a little bit and just enjoyed some time together…until the school called.

After a brief second of dread, we found out it wasn’t an emergency, it was just that Nolan was being stubborn (imagine that) about drinking his chocolate milk and the teacher didn’t know how to use the g-tube yet and could we help. No problem! So we drove back to the school. Honestly the big worry was that Nolan would see us and wouldn’t want to stay in school. He’s kinda a homebody and we thought for sure that’s what he would do. So we got to the school, got visitor badges, and went to his classroom…and there was Nolan, happily sitting at his spot at the table painting with his favorite color, red. He looked up at us and rather nonchalantly said, “Hi Mom and Dad, look I’m painting.” And we walked up and asked him if he’s ok and all of those thousand questions and he basically acted like we weren’t even there haha that little troll. We tubed him the rest of his milk, and gave him a kiss and he was essentially like “Go away, I’ve got this.” and as we walked out of the class we could hear him singing his phonics song with his class, “The snake is in the grass, the snake is in the grass, ssss ssss, the snake is in the grass.” Everything was ok, and everything was going to be ok.

School years are a marathon, I know it, and there will be easy weeks and difficult ones; but I think Nolan is in the right place for him – his teacher is super sweet and kind and he loves learning his letters and numbers. I know with our heart warriors it’s never as simple as sending them off to school – there’s so much to plan for, so much to worry about, and so much to explain. One that’s all done, though, keep an eye out – your kid will definitely surprise you! Here’s to a great year, kiddo.

The Best Kind of Handoff

Hey friends! It’s been awhile, I know…we closed out the summer having a lot of fun as a family before the fall rolled around.  This fall season, though, brings with it a very exciting time for Nolan: SCHOOL!

Yes, Nolan is finally getting back into school.  After his Fontan surgery last year, preschool was a struggle for Nolan: his recovery was fairly slow-going and it was tough for him and his teachers too – and I’m absolutely not speaking ill of them at all.  I think they wanted to do the best for Nolan and Nolan was trying his best, too, but we often got calls worried about Nolan looking too tired or too lethargic.  So in order to let him have a restful Fontan recovery, we decided to pull him out of preschool and let him do his thing at home.  Sure enough, things started to turn around for our little man and now he’s our jumping, silly little boy once again.

We decided to apply for an early-childhood preschool program through our local public school system.  Our oldest – Hudson – was in the same program when he was in pre-k and they did a fantastic job of preparing him for what school would be like when he started kindergarten, and we wanted the same experience for Nolan.  Nolan did get accepted to the program and we were super happy, but this was the easy part…the next part would by trying to work with the school to create the best atmosphere for Nolan: there are a few minor physical things they’d need to be aware of (taking time going up stairs, not going too hard on the playground) and medical things too (his g-tube and any oral feeding we’d like to have done at the school).

I have to admit, I was really nervous at first because I didn’t know whether the school system had the knowledge or capability or willingness to work with a kid like Nolan.  He’s not difficult by any stretch, but as you can imagine you always want your heart warrior looked-after in the best way possible.  This is where my wife showed her absolute awesomeness: she reached out to them and started the process going: they asked for all sorts of records and names of his care providers and sent him for several different evaluations, including PT/OT and neuro.  They were very thorough and held a call with their entire team present where they discussed how they evaluated Nolan, what they felt his needs were, and how they would be meeting those needs in school by developing an Individual Education Plan (IEP) for him.  I was so impressed…no lie…it was like they knew Nolan for his whole life and were completely confident that Nolan was going to get everything he needed in the school setting.  He’d get his PT and OT right there in the school and the staff will work on whatever feeding schedule we wanted him on.  WOW.  The next meeting was with the school nurse to go over his needs and care,  The school basically let us drive the ship, if you will…we could decide how long he could go to school, what he does and doesn’t do, etc.  I was really, really impressed.

So while the school day is something like 6 hours long, we decided to start him at 3 hours per day, Tuesday-Friday, just to see how he does.  All the while we were completely hyping up school to Nolan…he was getting really excited because , after all, his brothers go to school so why not him?  One day my wife took him to the school to go meet his teacher and while I couldn’t be there, it went in normal, hilarious Nolan fashion.  First they stopped in the office and apparently Nolan thought this was supposed to be the super-cool class we were talking about.  He had other thoughts.  He looked around and said to my wife, “Well this is disappointing.” LOL This kid!

His teacher was excited to meet him and was prepared to have him in the class, which consisted of about 13 kids, half of which were on some form of IEP like Nolan.  The teacher would also have an assistant in the classroom.  We took Nolan to open house and he was so happy to explore his room and to discover that the class had a coconut tree toy from Chicka Chicka Boom Boom, which is his favorite book of ALL TIME.  ]

So finally we were all ready to go: we had a feeding schedule down for the staff, the hours he’d be attending school, we already saw everyone there was to see….all we needed next was the first day of school…….UNTIL.  

Yes…in true Nolan fashion, he caught a cold the weekend before the start of school.  I was like:

Bruh really

So since colds last a really long time in Nolan’s world, he naturally missed his first days of school…and second…and third.  And then finally, the Friday of his first week of school….he was feeling way better and the big day arrived!

I took the morning off work so that I could be there for this special day (I always want to take all my kids to their first day of school)…and man it was just awesome:


Look at that happy little Whiz Kid! He was so happy to be going to “big boy school” and it was just such a special moment to pull up and walk him in with that ginormous backpack:


For me it was such a big, moving moment.  I was brought back to that time many years ago, where I’d walk into an ICU room and look at my little baby in the fight for his life.  And I would hope he’d make it….then I’d hope he’d sit up….then I’d hope he would walk…and now…here he was a strong 4 year old walking into pre-k like a big boy.  And I couldn’t be more proud of my superhero.

We walked him to the class and he greeted his teachers with a hug and was immediately enthralled with the goings-on in the room.  There was playing!  And he didn’t want to miss out, so he gave us a kind-of “go away now” wave and then he was off with his teacher to wash hands and go explore.

In this life we live, we’re used to all kinds of handoffs: handing your child over to the surgery team – multiple times – in order to save their lives, sitting awake at 7am as your night nurse hands off to the day nurse and you hope this one’s just as good as all the others.  This handoff, though, was special: handing him off to his teacher is one more accomplishment in his short life that has been marked by all the battles he’s had to fight.  This handoff signified that Nolan is beating the odds!

He’s been doing really well in school: he loves it and comes home singing all sorts of songs he learns there.  He’s also been more of a chatterbox since starting school, which I really like.  And – as always – Nolan is super silly!  We’re looking to lengthen his days there soon and I’m confident he will do an amazing job!

For those of you who are reading this and your kids are getting into school age, I definitely understand how nerve-wracking it can be.  Heck just thinking about kindergarten next year gets me a little nervous and he just started pre-k.  I’m not pretending to have all the answers (I never do), but all I can say is to explore all your options and know that what works best for other heart kids may not work for yours…and that’s ok!  They’re all different in their own awesome ways, so embrace it.  But what I will encourage you to remember is that you are your child’s #1 advocate! When it comes to all things – healthcare, education – you’re it…so do that until you feel completely satisfied.  Ask questions…LOTS of questions.  And then ask them again if you need to.  Get your child’s doctors involved.  Develop a good IEP plan with your child’s school so that you have all possible bases covered.  Finally, be excited for your heart warrior as he or she goes off to school…make it a celebration because it truly is something to celebrate!