Mason is doing pretty well and I wanted to do a post about where we’re at. It’s going to be a bit of a jumble, consider yourself warned! First I wanted to share a few pictures from this morning. Mason is getting stronger and working hard to get up the stairs. See how he pushes up on both hands? He’s not made it up yet and I really don’t want him to figure this out for a few months. I just can’t see how he can safely climb up and down when he can’t feel half his body! I’m sure when he’s old enough to think it through he’ll find a good method, but for now all I see is him falling and landing on his shunt. Not ideal.
Next: Mason’s urologist decided to go ahead and schedule his kidney/bladder evaluation for April instead of in six months. In one day he’ll have 3 test. First is a renal ultrasound to look at his kidneys and check for any damage. We’ve had this before. Next is a VCUG. Basically they’ll insert a catheter to inject dye into his bladder and take a series of x-rays checking what happens (if there is dye refluxing into the kidneys, etc). He’s never had this test done. This is one I can’t be with Mason during because I’m pregnant, so we’re planning to have someone watch the other kids so Daddy can come along for this. The third test is another we’ve done, a urodynamics study. For this one they place pressure sensors and then start filling his bladder with a catheter. They monitor the pressure and his bladder for spasms, among other things.
What’s the point to all these tests? First, we want to be sure his kidneys stay healthy. We need to see if the catheterization schedule we’re on (3 times per day) is effective still. We also need to see if he needs medicine to handle bladder spasms that could be thickening the wall of his bladder (and shrinking it) or causing reflux into his kidneys. We really don’t want to start the medicine as it comes with it’s own host of side effects, but it’s something we’re probably going to need at some point.
Moving on! We’ve gotten dates for our Wheelchair Evaluation. On a Monday in April we’ll go see what wheelchair we want for Mason by trying a bunch out. Then Friday of that week we head back to Myelo Clinic just for a wheelchair appointment to get Mason measured for a wheelchair. Then we wait for around 6 months for it to arrive. I’m excited for this stage! By the time we actually receive Mason’s wheelchair he’ll be close to age 2 and the independence and freedom it brings will be wonderful for him.
- He teething and it stinks. He’s a crabby bear some part of every day. Then you snuggle him and he tries to bite because it feels better. Well, it feels better for him – not for whoever he’s biting! Unfortunately he doesn’t enjoy chewing on other things, just people.
- He’s eating some real solids. Of all things he’s decided cheerios and pretzels are pretty good. If I cut up food to put on his tray at mealtime he plays with it, occasionally eating a piece, which is progress. But that leads me to the next issue.
- Allergies! We know he’s allergic to milk and soy to some degree (discovered when he was a little baby). Now that we’re trying to offer him some of our table food alongside his purees I’m struggling. I’ve cooked without dairy before (Joseph was seriously allergic as a baby and young child). Soy is EVERWHERE. I’m so annoyed because unless I want to spend a lot of extra time in the kitchen making things from scratch I’m seriously limited in what I can serve him. I’m working on that but extra time is a bit in short supply between doing his therapies, homeschooling his siblings, cleaning, and having fun just enjoying my children. I just need new routines and I’ll get there. Eventually.
- Speaking of dairy, once he’s eating solids well that will be the first food we try him on again to see if he’s outgrown the allergy. His reaction wasn’t major so I feel comfortable trying that. However I also need to get his skin in great shape before hand (get the eczema under control) as that was his main symptom with dairy.
So there you have it, our random update. Nothing major, which is just the way we like it!