Recent Updates:
- We took his G-button out last month and it closed in less than 4 hours - isn't the human body amazing?! This is a great outcome. Also, he is handling it well psychologically - he doesn't seem to be freaked out that it's gone, he's eating and drinking fine, etc.
- The move to Reno has been great for Joshua's seasonal allergies / asthma, which were getting so bad in Virginia that we weren't able to control them even with a mix of 6 meds, and the next step would have been seeing an allergist. Because Reno is so dry, we've been able to drop about half those meds and manage things much better, which is a positive quality of life improvement for J.
- I was a little worried how the school transfer was going to go, since Nevada is a low tax state (great when you're the tax payer, less great when you need government services). Josh's new school has been great, and I want to give a special shout out to the principal, who seems to approach IEP meetings with the attitude of "what does this kid need to succeed and what can I do to help him get there", rather than starting with the attitude that there are limited resources and only the most dire situations will be reason to loosen the purse strings. I don't know how she manages the money side of things, but i so appreciate that it feels like we're working together.
- Our "new" doctors in Reno are actually a mix of mostly his old providers (who are encouraged at how well he's doing now) and a couple new (so far, so good). The new docs often want to do their own tests for their records (such as hearing tests, VEEG, etc.), so it's taking some extra time and energy to get through this most recent round of doctor visits. There are a few docs we will eventually need to see in either Vegas, Salt Lake City, or northern California, but fortunately those appointments should occur less than one a year.
- Josh has a minor urology surgery coming up next week - it's called an inguinal hernia repair. It's outpatient but under general anesthesia - we would love prayers for no complications and a quick and easy recovery.
Overview Update:
It's got to be a little confusing when I write about how great Josh is doing, or for those of you who see him at church and playdates and family get togethers and in many ways he seems like a "normal" (as in medically and developmentally typical) kid -- but then I also do tons of posts about doctor visits, medical stuff, IEPs, and therapies. One day he's tearing through the maze at the pumpkin patch, and the next day we're having our Katie Beckett home visit.
So which is it - is he doing great or does he still have a lot going on?
The anwer is: it's both, at the same time. (I think many parents of kids with mild to medium affect chromosome disorders would agree with this.) His scariest and most complicated health issues were all caused by birth defects, and those have been surgically repaired. His life largely consists of enjoying regular childhood activities like going to the park, playing with friends, etc. Thanks to the grace of God, really good care from teams of doctors and therapists, and medical interventions like oxygen and the feeding tube and all the surgeries, he's doing really well now. And while we're very grateful that he is where he is, we still depend on regular help from the doctors and therapists to keep him doing as well as he is.
Why does he still go to doctors so often?
- For the known - Medically, he's got a lot of different things going on. They are all pretty mild and well managed, thankfully. We haven't had a hospital admission or ER visit or even so much as a school sick day for several months. But to keep him healthy, we're checking in with 7 doctors, we're administering medicines and supplements throughout the day, and we're keeping a running list of anything going wrong.
- For interactions when multiple systems are affected - There are two things to track when lots of systems are affected:
- Figuring out the problem - We notice a problem and have to consult multiple doctors and therapists to figure out what's going on and whether we can fix it. Often it's more than one thing and nobody's sure exactly what to do, so we try different things until something works or he grows out of it. (Some examples of this: getting off the G-tube; falling / balance problems for years when he was learning to walk; looking sideways out of his eyes; severe monthly nausea attacks.)
- Domino effect - If one problem develops, it can set off a chain of other problems, so doctors are more proactive when Josh gets sick than when medically typical kids get sick. One example of this -- last year I took both Josh and Zoey in for a sick visit because they both had cough and cold. It was one of those borderline sicknesses where it's bad enough that you want to get them checked just in case, but you know the doctor is probably not going to do anything. For Zoey, who was the sicker of the two, that's exactly what happened - they checked her over for 10 seconds and said to call back the next week if she was still sick. For Josh, presenting with the exact same symptoms of cough and cold, they gave him a nebulizer breathing treatment in the office, a steroid, prescribed an anti-nausea med and a high dose antibiotic, and made a change to his G-tube feeds. He doesn't get sick too often these days, and he's not nearly as medically fragile as he used to be, but when he does get sick it's just treated differently.
- For the unknown - With a chromosome disorder, we can expect new health issues to arise more often than for medically typical kids, so we need to do well checks with specialists more often to watch for certain things. (This is the main reason we currently see neurology and ophthalmology.)
And why all the therapies?
Developmentally, he seems to eventually hit every milestone, but it usually takes extra help (from therapists), extra practice (with us), and just extra time. Depending on what the skill is and how long it takes to master as compared to normal, this is sometimes a big deal and sometimes a small deal. (Or, as is often the case, it feels like a big deal when you don't know if / when he's going to master a skill, and then once you see he's going to get it, it instantly turns into a small deal.) Right now, his skill levels are all over the place -- there's some areas where he's very close to age level (academic skills like knowing his letters, gross motor skills), there's others where there's a significant delay (self-care, fine motor), and then others where it's a medium delay and it's somewhat context specific (speech, social skills). (And if you're wondering how I know where he's at with all this stuff - it is unreal how often special needs kids get evaluated. I could probably give you percentiles and paperwork for where he was at in every developmental area for every quarter of his life, starting at birth.)
This part of his care has gotten a lot easier for me now that he's school age and most of his therapies take place at school, but I still spend a chunk of my time communicating with teachers and therapists, trying to figure out if there are toys or activities or therapies or IEP goals that we could add to be helping him more, and figuring out our public and private insurance options to help pay for private therapies. I wrote awhile back about how important therapists are, and I still can't say enough about how valuable the work of PTs, SLPs, and OTs is.
I write all of this out to give you a better picture of where we are and what Josh's life is like. As I said above, I think this is a pretty typical situation for kids with mild to medium affect chromosome disorders - the details would be different for every kid, but this is the idea.
