Summer has been really great. Stephen's been at daycare/camp off and on through-ought the Summer. He's had some weeks off to just chill at home with me, spent a week with Mimi & Poppy, spent a week in NC with Nannie & Poppa, and spent the rest of the time with his buddies at "camp." And just because, he's gotten to stay home a day here and there. We've spent a little time at the beach (not nearly enough for Mom), a lot of time at the pool, and did some fun things like the Philadelphia Zoo, a Flying Circus Air Show, explored some new parks, saw Thomas & Percy (at the Strasburg railroad) and went to a polo match with his cousins. All the while our house was under construction. We undertook a major kitchen renovation and replaced all of the flooring on our first floor and updated our powder room. It was a much needed facelift to our house and we finally took the leap after agonizing over the decision for 3 years!
Here's a little photo recap of our Summer highlights:
Annual trip to Sanibel, Florida in May to visit Mimi & Poppy
A rainy May meant a lot of trips to the Air & Space Museum!
Happy Father's Day!
We were at home this year for 4th of July, so Stephen got to decorate his motorcycle and ride in our neighborhood 4th of July parade
Someone was in heaven!!!
Stephen still doesn't like the "big" fireworks, but this year he was really into the sparklers and bottle rockets.
A two day trip to CHOP, meant a fun afternoon at the Philadelphia Zoo with Mom, Mimi & Poppy
First pony ride!
We got to spend some time while down in NC with the Freeman's. Stephen loved playing with the girls and had so much fun!!
Ferry ride to the Fort Fisher Aquarium
Stephen and I took a Sunday afternoon trip to see the Flying Circus Airshow in Bealton, Virginia. It was a super hot day, but so much fun! We can't wait to go back again!
A cool new park we found to enjoy on a hot Summer day
And a friend at the park! :)
Twilight Polo with Norah and Chloe out in VA horse country
Stephen got to climb up in a combine at another local park/farm; he was in heaven!
Not so excited about picking sunflowers with Mom.
But a big helper, none-the-less :-)
We did a lot of fun stuff this Summer, but we did have to deal with some bad stuff in between and that included a 48 hour hospital stay at CHOP in June right in the midst of the construction going on in our house. Right around mid-June, right before the end of school, Stephen got a urinary tract infection. He came home from school one day and felt warm and then started having some accidents. Thankfully, we already had his 5 year checkup scheduled with the pediatrician for the next day, so the timing was pretty good because we could get in to see his main pediatrician (who knows him really well and is awesome with complex kiddos). As I suspected, he had a UTI; his first, shockingly. We had to wait a day or two until the culture came back and they could start him on an antibiotic. By this point, he was having really high fevers and a lot of abdominal pain which really worried me. Once the final culture came back, they switched up the antibiotic and we got sent for a round of bloodwork by his doctors at CHOP.
Of course, the blood work didn't come back good. His creatinine was up and everything was off just a bit. They wanted to admit him right away, but he was feeling better, so I got them to allow us to push fluids really hard for a night and then re-check labs. Re-checking the labs on Sunday morning turned out to be a feat in itself (actually a down right disaster) and didn't end up giving us any better results; so off to CHOP we went for admission. Stephen was admitted Sunday afternoon for IV fluids and antibiotics, and to get his immunosuppressant drugs back to baseline. And of course in the meantime, he missed his Pre-K graduation at school. Seems to always be the way!
In the meantime, his gtube decided to freak out and his stoma site (the hole and around around where the gtube goes) was deteriorating. So during the admission, the gtube nurse came and tried to work on getting his stoma site healed. Of course that meant coming home with a foley-like tube sticking out of his stomach and a whole mess of stuff to deal with.
Thankfully, he was feeling better in a few days, his stoma site started looking better within a week, and I put his gtube button back in. He couldn't go swimming with it at the pool easily or go to camp with this tube hanging down, so it had to go! Since he was feeling better, off we went to Mimi & Poppy's house as planned. But of course, while he was there, the UTI came back and they had to take him to urgent care for a urine culture. It was a crazy couple of weeks to say the least!
Because of all of this, his doctors wanted him to have an ultrasound of his bladder to make sure he wasn't refluxing urine into his kidney, which also added an appointment with urology and we had to have a follow-up with surgical regarding the whole gtube issue. This all lead to a marathon two days of appointments (6 to be exact) at CHOP in July. But all of the test results came back good and surgical was pleased with how the gtube was healing. So as soon as we got back from Philadelphia, we took off for Nannie & Poppa's in NC.
Unfortunately, a few weeks ago, the gtube stoma site started deteriorating again and it was a HOT MESS for about 2 weeks. We were panicking that it would need to be re-sited, and Stephen's just not ready yet to completely get rid of it. He still can't drink all of his fluid requirement (1,300 ml per day) and isn't able to swallow all 8 of his medications yet. We're working on it, but he's not there yet. But everything we were putting into the gtube was just leaking right out. It was such a disaster! And maddening and frustrating, because no one had any solid solutions. Eventually I had enough; changed the button size, and things have dramatically improved. We've moved to only using the tube now for medications twice a day and an overnight tube feed of water only when needed and Stephen has stopped taking his feeding pump to daycare/camp with him, and next year he won't be taking it either.
We met with his new school a few weeks ago and finalized his Individual Health Care Plan (IHCP), and I'm feeling really good about how they're going to handle things with his health and if his needs ever increase, they're ready, willing and able to handle it. Even the Vice Principal was accommodating in talking about his anxiety and troubles with acclimating to new environments. So I'm really hopeful about next year.
But most importantly, Stephen is really healthy right now! Aside from those two UTIs and the gtube issues, he's remained healthy this Summer. His nephrologists at CHOP are keeping a close eye on some donor-specific antibodies (they've increased one of his immunosuppressant drugs to compensate) that creeped up a little, but it's nothing of concern. And we'll just keeping chugging along with lab work every 6 weeks and visits to CHOP every 3 months as long as things remain status quo.
Stayed tuned for first day of school pictures on the 29th!! Say a little prayer that Superman gets on the bus and stays on the bus! :-)