The stars of fortune must have aligned, because we had the opportunity to visit Aulani, Disney’s Hawaiian resort, for Clark’s 4th birthday! Technically, we spent his birthday on the Big Island, but for 5 magical days prior, we celebrated in Aulani. This was absolutely perfect for Clark, since swimming is one of his favorite things to do (besides eating chocolate and ice cream). Instead of amusement park rides, the kids swam in the lagoon and played in the sand; they enjoyed the infinity pools and hot tubs, the water slides and lazy river. They even had a giant splash-ground.
Traveling with a medically-fragile child has its challenges. Fortunately for us, Clark was stable and healthy for the vacation.
Before our travels, Clark’s hematologist thought it would be best to check his CBC, in hope that the iron supplement was doing its job. Thankfully, it was! Clark’s hemoglobin had increased to 7.6 (before he started the supplement, this number was 6.6). That’s not a huge jump, but it had only been 6 days since his last CBC. Clark’s platelets were at 68. They were out of the danger zone and seemed to be holding steady. Platelets help blood clots form, so anywhere under 50 is considered too low to play sports or ride a bike. For most people, a transfusion is necessary if the platelets drop below 10, but because Clark has Hemophilia, his doctors recommend a transfusion if he drops below 30-40. (As a reminder, Clark has mild Hemophilia A. This means that he has only ~17% of his Factor VIII (8). Factor VIII is also vital to help blood clot.) As well, his WBC (white blood count) was healthy and in a normal range.
Packing requires a little extra planning for Clark. We bought Clark a wet suit to keep him warm. You’d think the Hawaiian weather would keep him warm, but we’ve learned that Clark gets cold in a heated pool in the California sun. This is possibly due to his low hemoglobin. Despite his healthy blood counts, we must travel with his medication, notes from his doctors, and a medic-alert bracelet. Most of Clark’s medications are for his Hemophilia (intravenous factor treatment, medication for mucous bleeds, and a nasal spray for immediate results). Clark also takes 3 eye drops, 3 times a day for his Glaucoma and pressure in his left eye. And now, Clark’s iron supplement.
Packing requires a little extra planning for Clark. We bought Clark a wet suit to keep him warm. You’d think the Hawaiian weather would keep him warm, but we’ve learned that Clark gets cold in a heated pool in the California sun. This is possibly due to his low hemoglobin. Despite his healthy blood counts, we must travel with his medication, notes from his doctors, and a medic-alert bracelet. Most of Clark’s medications are for his Hemophilia (intravenous factor treatment, medication for mucous bleeds, and a nasal spray for immediate results). Clark also takes 3 eye drops, 3 times a day for his Glaucoma and pressure in his left eye. And now, Clark’s iron supplement.
Watching Clark have the amazing birthday that he deserved was definitely worth all of the extra planning and packing.