The Adventures of Jadon and Kalina: Appointments

I have to admit, I love when the school calendar is published. Why? I can start making appointments for Jadon and Kalina. I do all I can to schedule appointments that do not conflict with school. That means I need to call early – very early in many cases.

Some people look at Jadon and Kalina and assume we “live” at Children’s. They are actually very healthy kiddos. They see many clinics at Children’s but they only need to see their doctors every six-months or every year (unless they are sick or something changes with them).

So, we had lots of appointments the past few months.

We started with ENT at the end of May. Jadon and Kalina see two ENT doctors – one specializes in airways. We saw him at this appointment. Based on their visit to pulmonary earlier this year and this visit, we decided it was time for both kiddos to have bronchoscopies (scopes of their airways in the OR). I schedule them for the same day in July.

Kalina saw audiology at the end of May, too. Her hearing has not changed significantly. We are working on getting her to wear her hearing aids most than just at school. She is doing better but would probably benefit from wearing them more.

Jadon saw audiology at the end of June. His hearing is stable, too. He, unlike Kalina, benefits from one ear having pretty good hearing (just mild hearing loss). He can also hear most sounds, just not all sounds in both ears. This means he has always been good at compensating. He wears his hearing aids all day at school and not much at home.

Next on the agenda was pre-anesthesia clinic (or PASS clinic). They needed to go in preparation for the bronchoscopies that were scheduled later. Usually this is not a very “exciting” appointment. We did learn that Jadon and Kalina have two new surgery restrictions. The both have neck movement restrictions and their surgeries are limited to 45 minutes without spinal cord monitoring. We understand why the restrictions were placed. The only really bad news is that the anesthesia used for the spinal cord monitoring makes Jadon very sick. He wakes from surgery nauseous even though he has nothing in his stomach. Kalina has never had it so we are not sure how she will react.

Next Jadon went to see our eye doctor, Dr. Peck. We really like Dr. Peck. Andy and I always joke that we are some of his youngest patients. Jadon was probably 50 years younger than anyone else there the day of his appointment. Jadon, as we suspected, inherited our less than perfect eyes. He is nearsighted, like us, and his vision is about 20/80. So, off to Costco we went to order glasses. We got them about 2 weeks later. Jadon wore them around Costco commenting on all he could now see. He even sang A Whole New World as we shopped. So, they were definitely needed.

Next on the schedule was a power mobility evaluation for Kalina. This appointment would tell us if Kalina was ready for a power scooter, like Jadon’s. I was a little nervous about her driving skills so we had Kalina practice driving Jadon’s scooter. There was no need to worry. She is obviously a visual learner and did a great job her first time. When she drives, she has the same mannerisms as Jadon. It is cute to see. Jadon did give her some pointers to help her. He is a great teacher. By the end of our first “lesson” Kalina was doing doughnuts in the driveway. Here appointment went well. The evaluation report said she was, “an excellent driver.” Now we are just waiting for Kalina to get her own wheels.

Craniofacial clinic was next. The craniofacial clinic here is great. When you go to clinic you have the opportunity to see a variety of providers. Jadon and Kalina saw their main craniofacial doctor, their other ENT doctor (she specializes more in ears), their nutritionist, and a speech therapist. Jadon also saw his orthodontist and has dental molds, x-rays and imprints made in the dental tech department. Wow! Highlights from those appointments include learning that Jadon and Kalina may be candidates for surgery to improve their hearing loss (to be evaluated in a year), learning that Jadon has to have 8 teeth removed (4 baby and 4 permanent), and deciding to try some additional experimental speech therapy with Jadon and Kalina.

A few days later Jadon and Kalina both had bronchoscopies of their airways in the OR. We have never had both kiddos have surgery the same day. Kalina went first. Her airway is still pretty small and floppy. Not a surprise. Jadon airway has shown some improvement. It was the first “positive” news we have received on his airway. We now need to work on capping his trach and a few other things. Jadon will have to have another sleep study before we get too far along the path of thinking about decanulation (trach removal). Most important, Jadon will have to be mentally prepared to handle and accept decanulation. He has always been afraid of this prospect and for good reason; he only knows himself with a trach – a trach he needs to breath (he has had it since he was 19 days old). He understands that so thinking he might not need it is very hard for him. So, we will work on that, too.

Orthopedics and skeletal dysplasia came in early August. Jadon looked at me the morning of the appointments and asked me if I was scared. I told him that I think I will always be nervous before ortho appointments. Given our history of broken rods, you just never know what you are going to see on the x-rays. Our anxiety was heightened since Jadon had some recent back pain that left him doing very little for a day. Our first thought – a broken rod. Luckily, everything looks good in both kiddos. Jadon’s fusion is healing. There was no evidence of cracks in his fusion but it is still not completely healed (normal). We continue to ask for prayers for a fusion and rods that last forever.

We returned to the dental clinic just before school started. Jadon’s surgery is scheduled for November 30. His surgery will be over the 45 minute limit so he’ll have the spinal cord monitoring. We are hoping he will not need to stay the night but a room will be held for him just in case he needs to stay.

I think that about sums up our appointments. We are ever thankful for how healthy Jadon and Kalina are and for the great team of doctors, nurses, etc. that care for them at Children’s.