Losh is now 8 years old and with a new age came a lot of new changes. Aloshua has been doing really well and we are so proud of his progress. His last illness was in January of 2013 (RSV), and though he required the vent and oxygen, he managed to overcome the illness on his own without needing to be hospitalized. Since, then he has been in good health.
Weight: 17.5kg He is the average size of somebody half his age.
ENT: These guys loved how great Losh has been doing. They did a short cap trial in the clinic and decided that he was doing well enough to be “capped”. This means that he now breathes through his nose/mouth instead of his trach. The cap comes off at nighttime, but he is having a sleep study in August with the cap on. Depending on how well he does with the sleep study will determine whether or not the trach can come out! This is HUGE news. In the meantime, Losh is enjoying the new found LOUD voice that the cap gives him. He enjoys hearing him talk, and other people are able to understand him much better.
Neurology: There is no change here. As long as his shunt is working properly and we don’t have any concerns about Tethered Cord or anything like that then we don’t see these guys often. We typically do yearly scans, but with Losh being on radiation risk (meaning they don’t want to scan him more than necessary) they opted to wait another year unless something comes up.
Rehab: Rehab deals with equipment needs (wheelchair, walkers, etc). However, our PT also deals with our equipment needs as we see them more often. We are in the process of growing his chair (making it slightly larger to accommodate some growth). We are also working on getting him an anterior walker. He has been using a posterior walker for many years and has done well with it, but as he advances we are working towards getting him to using arm crutches. The anterior walker mimics this more than the other. It also allows him to walk faster and more smoothly, and he thinks he is a hot-shot
Urology: The only recent testing he had was a renal ultrasound, but we are currently waiting on the results from that. He is getting more aware of his bladder urges and is able to tell me when he needs cath’d, though this isnt always. Due to some prescription hassles he has not been on his medication and there is no difference with or without it. We go soon for a checkup with Urology.
Pulmonary: We saw Pulmonary after we saw ENT and they were also quite impressed with how well he has been doing. Because he hasn’t needed the vent and is now capped, it was decided by insurance amongst other things that he will not be needing the ventilator in the home. Now, Aloshua hasn’t been ill since January, but at the same time, he hasn’t had an illness where the vent/oxygen was not required. This is a scary situation, but I have faith that with the cap things will be better (less trach related illness for one). We haven’t actually departed with the vent yet, but the supply company is already asking to schedule a pick-up date. If he does get sick and need use of a ventilator then we will get one back in the house.
Ophthalmology: We go soon for another visit with these guys. Losh’s vision has been improving with each visit and I expect it to with our next visit. The best thing as of late is that he has been able to recognize many colors (he is color blind in one eye).
Nutrition: We are working on securing a feeding pump to start continuous nighttime feedings. This will aid in him gaining weight, but because he eats by mouth it is a bit of a struggle to get insurance to approve this request. Thankfully, we work with a great nutrition team and they are writing fabulous letters stating why it is medically necessary that this happens.
Overall, there has been a lot of progress for Losh. He is still facing many challenges ahead, but he remains strong and will overcome each obstacle with a smile on his face because that is all he knows.
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I recently did a short interview with a Ghanaian website about being a single mother with children who have special needs. You can read it here
Thank you all for the continued support for Losh. He appreciates all the kind words and prayers from his many fans and supporters.
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