It has been brought to my attention by several Stellan fans that I haven’t been posting regularly enough, and believe me when I say I’m very aware of it. The fact is, being a parent is tough, a working parent tougher, and a working parent to a special needs kid… well, I honestly feel like I’m running on vapor most of the time. Quentin and I are often like two zombies, only faster-moving. We never get enough sleep, we both have very demanding jobs which we love, and Stellan’s care is more than a full-time job in itself.
Of course there’s the “regular” being a parent thing which is a job in itself, but we are also coordinating several doctors (pediatrician, neurologist, nutritionist, GI, ENT, ophthamologist, orthopedist, and now a surgeon to check on the g-tube) as well as four therapists (two physical therapists, one occupational therapist, and one speech therapist, for a total of 7 sessions per week), the medical supplies provider, and of course, the insurance company. The last of which is fodder enough for another post altogether, if not eighteen, all of them brimming with anger and frustration.
But there’s also Molly, Stellan’s amazing nanny, who started taking care of him months before we knew anything about his condition, and who has taken everything in stride and loved him and cared for him just like any other kid. When I’m sure many nannies would’ve gone running the other direction, she has fully embraced Stellan just as he is, and we are so lucky to have her.
And we have gotten some good news in the past few weeks too. We had Stellan’s 6 month ISFP meeting, which is something that happens every six months as part of the Early Intervention program (something I have another whole post dedicated to, but haven’t had time to finish writing), on April 9. At our first meeting, Stellan was given physical therapy twice a week for 30 minutes each and occupational therapy once a week for thirty minutes (which we fought for, since initially we were granted one session every other week), and later, after he stopped eating in late October, one 60 minute session per week of feeding/speech therapy was added to the mix.
At our meeting on the 9th, we asked to double his physical therapy sessions to 60 minutes each and split his single speech therapy session into two per week. We also requested a monthly meeting with the entire team, and we were granted everything we asked for, since Stellan’s needs are so great. Altogether amazing news, but now I’m in the process of trying to redo what was already a pretty intense weekly schedule. Starting the day after that meeting, Stellan has four PT sessions per week (two through EI and two private), two speech sessions and one occupational therapy session. I still haven’t figured out the new schedule…
Another awesome thing that happened was that Stellan’s “stander” arrived, or his assistive standing device, which also came through the Early Intervention program. Since we learned back in November from the orthopedist that he would soon start to lose bone mass due to the fact that he is not weight-bearing (no sitting, kneeling, crawling, or walking still), we started working with his therapists and our EI coordinator to find the right contraption. Six months later, Stellan’s Leckey Squiggles stander arrived, and he loves it. He’s supposed to spend at least 30-45 minutes per day four times per week in it, working up to 60 minutes per day, and we never have a problem with him spending that much time in it since he seems to love every minute.
And speaking of the orthopedist, we got some more good news (or at least not bad news) yesterday when Stellan had x-rays on his hips. Apparently kids like him have a high percentage of major hip issues, many of which contribute to their trouble walking, due to their limited motor skills. But yesterday our doctor came in, looked at the x-ray, and said “I’m very happy with everything I see on this picture.” We don’t hear that very often when doctors look at his scans, so we breathed a massive sigh of relief. She felt good enough about the x-rays and about his range of motion in his hips (which is still very limited, granted) that he doesn’t need another round of x-rays at his next visit in six months.
She also noticed that his head control is visibly better, something that everyone has commented on in the last few weeks. So all our hard work – and, more importantly, Stellan’s hard work – is starting to pay off.
And not a moment too soon, either. We needed a dose or two of some good news after a few tough weeks where work was overwhelming for both of us, Stellan’s feeding pump broke (on Easter Sunday, no less, when getting a new one wasn’t really an option), and friends’ kids his age and younger all started walking, which was the hardest of all.
Now we are looking forward to spring and summer. To warmer weather, to picnics in the park, visits from friends, and more improvements from our little Superman.