Reilly remains in good spirts. Most days he’s his normal happy, spunky, feisty self. But let’s be real for a second and point out that like other six year olds, he definitely has melodrama moments...lol.
Reilly wrapped up kindergarten with flying colors and excelled in reading and math. Although virtual learning was a God send this year, we’ve discovered that given his condition and attention span, the best place for him to excel will be back in the classroom. We met with the school and picked a classroom that will suite Reilly’s needs. His IEP seemed promising and we are looking forward to working with the support team. In the meantime, we are still trying to navigate through many other obstacles before he can go back at the end of August.
With this pressure sore from last year, the area remains tender and very susceptible to re-injury. Unfortunately, we’ve had to learn this the hard way a couple times in the last 6 months. We’ve been working with an orthotics company customizing a trunk support vest to help provide proper posturing. This is currently getting a few minor adjustments and should be here soon.
While his power chair will provide him a great deal of independence and mobility, we’ve discovered that he will need an additional seating option for resting. The power chair should be about 50-60% of his day, but not 100%. We purchased a recliner and a special overlay seating system for him, but now that we have it in person, it will not work without modifications. The overlay has a firm backing which none of us knew about. Since his pressure sore is located on his tailbone, the backing is too rigid and we are brainstorming ideas to provide pressure relief so that the area isn’t aggravated again. Egg form and medical sheep skins seems to be in our future. We have his physical therapist stopping by to review the set up and make recommendations.
Speaking of seating, he’s outgrown his manual stroller chair and a prescription has been placed for a new manual wheelchair. Since our insurance doesn’t cover wheelchairs, but CCS does, we have to wait for the denial letters before they will give the final approval. We’ve received a couple in the mail which means this should be coming soon.
We’ve finally overcome a major hurdle!!! Reilly’s always had challenges being on his travel vent. The humidification isn’t really enough for him and his secretions become a major factor in his discomfort. Weather plays a major role in how long he can be off his normal ventilator. Some days he can go for 4 hours, but other days it’s a struggle for 2 hours. Preschool was an eye-opener and we’ve been trying to figure out a solution from about a year. Without a proper solution or virtual learning as a fall back, medical schooling or shortened school days would have been his only options. We want to acknowledge Reilly’s challenges, but not shed a negative light on him with his peers, so neither of these options seemed to be a right fit for him. Through many failing trials and with the help of his pulmonologist we’ve finally received authorization from insurance for another ventilator and humidifier which will stay in the classroom. This alone is a huge weight off our chests.
We are anxious to get Reilly’s forever home started. Due to COVID restrictions, we’ve been waiting since January for the approval and the permit. We had a slight hold up with one of the departments at the County, but it sounds like we will finally have the permit in hand in the next couple days. In the meantime, the septic and additional retaining wall have been installed. Reilly has expressed his excitement to have a space to play video games with Kyle, garden with me, and have a tree fort. He thinks we will have enough room for a zoo and keeps asking to get animals of all kinds. Love that he wants to share his life and love with animals.
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