A Lil' Boy's Journey to Live….

Archive for June, 2015

Long Monday @ChildrensPhila .. ♡

Update .. I’m going to try and sum up Riley’s 8 hour day at CHOP on Monday.
We started the day with the heart transplant team. Little Riley is up to 57lbs! Not so little anymore. BP was good and pulse ox was 98%. That in itself is Amazing! This is the little boy who before transplant sat around 69% on 4 liters of oxygen at rest!
We saw Dr Rossano who couldn’t be happier with how Riley’s doing. He said the EKG and echo looked unchanged and that Riley’s heart is squeezing nicely.
Before leaving cardiology Riley got to see his Buddy .. Dr Hanna. We revisited the idea of Riley going to Camp Dragonfly. Next summer it will be! A week away but I know he’s in good hands. Also next summer assures us that Dr Hanna will be there. He retires December 26th 2017 .. at 3:30pm as he will be sure to remind you. (He says he will do camp till 2018.)
After cardiology we headed over to plastic surgery. Once there we learned that they went ahead and also scheduled an appointment with genetics. Works. Genetics has ordered genetic testing and finally a Heterotaxy panel. Insurance has already approved it .. which is great! We’re going to wait till Riley’s next labs around the end of July. They said the final results will be about 12 weeks.
Heading over to plastics. There they confirmed Riley having Velopharyngeal insufficiency. They want to start with increasing his speech therapy. By increase their talking 5 times a week. Sounds great to us .. Not so sure what the school will think or if it’s even possible. The speech therapist in plastics talked about coming to CHOP. Either seeing if Sandy .. who is doing the feeding .. can add more sessions or possibly seeing someone else. We will see. Plastic surgery along with genetics would like to see Riley back in 6 months. Plastic surgery is leaning towards the idea that Riley may need surgery to address his VPI. During this surgery they would take tissue from the back of Riley’s throat and use it to reconstruct his pallet. We will see how things are in 6 months.
Well .. that pretty much sums it up. In the big picture .. It was a Good day! We knew this Journey wouldn’t come without bumps in the road but Riley is here for the ride .. Loving and Living Life and in the end that’s all that really matters .. ♡

Riley and Dr Hanna ..



Riley’s Visit with ENT .. ♡

Update .. Riley had a visit with ENT today. In their voice clinic. The visit went well but there is always something .. right? Well ENT is sending Riley over to plastics. They believe Riley may have Velocardiofacial syndrome .. 22q .. DiGeorge Syndrome. When it was explained it made sense. I’m just not sure why we’re just hearing this now at 7 years old. ENT has reached out to transplant to check Riley’s prenatal records from the fetal heart program. Luckily all of Riley’s care has been at CHOP since before birth so getting this info won’t be a problem. My thought is though that either he doesn’t have it or they haven’t tested for it because if they knew he had it I would know.
So for now we make an appt with yet another team and go from there. The thought is though that Riley has had pretty intense therapies for the last 7 years. It may require surgical intervention .. But we’ll cross that bridge when we get there.

Time to Eat ..

Riley was Super Excited to Share that He Too was having some Rice, Corn and Chicken Tonight 🙂


~ the simple things in life that many take for granted ..

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